Yes, dear reader, this post is about poo (bowel movements in adult speak), or more accurately, the absence of same. And please note that the ‘No Sarcasm’ sign has been turned off for the duration of this post.
Fortunately, it has been revealed by some in the neurodiversity camp that there are no proven links between any comorbidities and the causes of autism (other than - potentially - seizures). As such, I can therefore hold my head high and treat the Bear’s medical issues without any fear that I could be accused of trying to ameliorate her autism. Her biggest set of remaining medical issues - yes, there are others that now appear to have been ameliorated - are GI related, including alternating and sometimes concurrent chronic constipation and diarrhea, and absorption problems (e.g. low levels of many essential trace minerals and iron – as confirmed by Ontario government medical lab tests, for those whose thoughts veer off in rebuttal in the direction of quack labs - despite supplementation).
The latest bout (note that 'latest' is not synonymous with 'first') started on Friday at around 2:00 PM. The Bear, who had not had a bowel movement in three days, had what we affectionately call a 'shart', i.e. a small leak of gas and liquid stool. Momma Bear cleaned her up and waited for ‘the big one’ which usually follows. Instead, the Bear had another shart. Same cleanup, same wait. And another. Same cleanup, same wait. The Bear usually has a bath after a bowel movement (like night usually follows day - to us it is not a BM but a BM&B) and is fine. This time she did not, and the combination of wipes, rubbing, and irritation from the sharts left her rectum sore and red. Now comes the really fun part.
The Bear began to try harder and harder to have a bowel movement. It obviously hurt, and she started to cry. She strained harder, and cried more. And then she relaxed, calmed down, and looked just plain uncomfortable. A half hour later, the same thing, but with louder crying, screaming, and more tears. Crying is unfortunately ‘normal’ on these occasions, but this time it was worse, and the crying and straining continued on and off with increasing frequency for a few hours. Eventually she passed a small brick (yes, it was about that hard), with much crying, obvious pain, and discomfort. Momma Bear had a very hard time cleaning her up, because by this point the Bear was quite sore and resisting any and all efforts. She then had her bath, I came home from post-work grocery shopping, and we thought this was over for the evening.
But it wasn’t. Within a half an hour, she started sharting again. And pushing, and straining, and crying, and yelling. We kept checking, and trying to clean and wipe her and load on the protective barrier. Because she was so sore she kept resisting. Obviously more was coming, and the frequency of sharts was too much to put her in the bath. Faced with the choice of leaving her and allowing her to become more inflamed, or wrestling with her to clean her, we chose the second option. For some reason, the fact that we kept explaining what we were doing and saying that we were trying to help her didn’t seem to matter to her very much. And Wow! - residual hypotonia notwithstanding, is she ever strong! The frequency of attempts increased to about every ten minutes and went on for hours. We talked about taking her to the ER to see if we could get an enema (my choice), but figured that she would probably sit in the waiting room for a few hours with the same issue and no easy way for us to keep her clean, which would lead to further irritation (Momma Bear’s thoughts).
By about 3:00 AM she fell asleep, exhausted. For about ten minutes. Then she woke up, crying and whimpering as she strained, and fell back asleep. This continued all night. By about 8:00 AM, when the Bear woke up for good, Momma Bear and I were at wits end. When we checked her diaper, sure enough she had had more sharts during the night. More cleanup, more wrestling. Of course, we were handling this like the mature (and well rested) adults that we are (if you believe this…), which was helping the situation immensely. We compromised on phoning the provincial Telehealth service, where we could speak to an RN.
The RN walked us through the emergency list (still breathing - from constipation??? - and no fever, which was good), and ensured the Bear was properly hydrated (she was). She asked about her diet, which contained all the right foods, etc., and we mentioned that a) the diet was worked out by a PhD in Nutrition and b) that the Bear was in the process of coming under the care of a GI specialist at a local children’s hospital (thankfully, as a corollary of free medical care everything works at lighting speed). She suggested monitoring the situation (our first choice too for a distressed child who is regularly screaming out in pain) and bringing her to the Doctor if it didn’t clear up by the next day. She gave us a list of preferred foods (pretty much all of which the Bear already eats). She also asked if we had tried a suppository. "Er, no?" Given my experience with such things, she explained how to use one – “You want me to do what?” – and off I went to the Pharmacist to buy some.
Back home, we went through another cycle of pushing, and then we cleaned the Bear up and tried the suppository. (Of note, this is the first ‘supplement’ that I’ve tried on her that I haven’t tried on myself first). Of course, the Bear graciously cooperated through this. We put a diaper on and waited. Within five minutes she gave a mighty strain, complete with screaming and tears, and there it was – ‘Brick, the Sequel’, complete with an embedded and undissolved suppository. We were overjoyed. By early afternoon the Bear was cleaned up again, bathed, fed, and she was happy. Much happier than anyone with no real sleep the night before had any right to be. She ran around giggling, wanted to play, wrestle, was in great spirits, and still actually liked us (I’m still expecting PTSD to kick in within a few days). Now all we had to worry about was the two jars of prunes and the spoonfuls of Lansoyl. We didn’t want any more action for at least 24 hours so that the cream and time could have their healing effect.
Sunday morning, and all was still quiet. Then the strains and crying started again. And the pushing. And the sharts. She also started toe-walking, something that she had stopped doing nearly a year ago. Here we go again. This time though, we had the suppositories. We waited about half an hour to see if the Bear could resolve the problem. Momma Bear wanted to wait a few minutes more, but not this time. In went the suppository (again, with the Bear’s complete and total cooperation), and within five minutes, out came Brick #3. After the cleanup and bath, peace and order was restored. For now.
So far, everything is okay. The GI specialist has moved much higher up our priority list, and we’re trying to figure out just how many prunes one little girl can eat. But thankfully I can rest assured that – despite a lack of research (only now is the UC at Davis starting to look seriously and systematically at the issue of comorbidities) – like all of the Bear’s many medical conditions that we have cleared up (commensurate – totally coincidentally - with some of her most significant gains), this has nothing whatsoever to do with her autism. What a relief!
The ‘No Sarcasm’ sign has now been turned back on.
---
Update – Yesterday the prunes and Lansoyl caught up. The Bear had three 'normal' (for her) mushy wet BM&Bs, without a lot of upset. We’re now back to the other end of the BM spectrum, until the pendulum swings back to constipation. Note also that I promise to do my best not to write about this issue again.
Tuesday, August 29, 2006
Friday, August 18, 2006
A Couple of Bear Updates
Sometimes you lose, and sometimes you win.
On Wednesday the Bear had another PECS session. She was doing so well at home, demonstrating that she understood which card to use to request ‘milk’, or her soother, or the swing, and she was also showing signs that she was starting to understand other cards as well (for various videos and games we play with her).
So at the PECS session, I set up her binder with three cards on it (nose, spoon, and ‘milk’). She selected the milk card and handed it to me. I held it up to show her, said ‘milk’, and then handed her the cup with a couple of ounces of milk in it. While she drank the 'milk' I put the binder out again with the soother card. When she finished, she handed me the cup, looked over, grabbed the soother card, and handed it to me. I again showed her the card, said ‘soother’ and gave it to her. So far so good.
The therapist then said, what would happen if you gave her a choice of milk or soother, and then had her choose the right item after giving me the card? I was confident that she would get this right. We put both cards on the binder, and she pulled the milk card. I then showed her the card and identified it, and put both options in front of her. She scooped up the soother and walked away.
We repeated this three times, and each time she selected the milk card and then took the soother. Apparently ‘milk’ is the first card to choose in any situation, followed by soother, and then by something else.
We’ll keep working on this one. At least she can distinguish between the cards. Now we just have to link them to the correct object/action.
---
When the Bear goes to IBI we always pack her a snack. Today was sliced organic strawberries and kiwi. The goal is to get her to use a pincer grasp to pick up the fruit and eat it. If they put the food in her hand she will put it in her mouth, but getting her to pick it up herself is not easy, and a pincer grasp is harder still. Most of the time she will grab the tutor’s hand and guide it to the bowl to signal that she wants them to pick up the food for her and put it in her hand. We and they also put food on her spoon and try to get her (guided) to put it in her mouth. She has never attempted to do this by herself.
Today, totally unprompted, she reached over by herself and picked up the spoon, which had a piece of fruit on it, and put it in her mouth, as if she had been doing it for years. Her school is closed for vacation for the next two weeks. In the meantime, you can bet that she will have lots of access to a bowl of sliced fruit and a spoon.
Sometimes you get a win, and sometimes you don’t. I’ll put this week in the win column. Tonight we’re off to Canada’s Wonderland to celebrate.
On Wednesday the Bear had another PECS session. She was doing so well at home, demonstrating that she understood which card to use to request ‘milk’, or her soother, or the swing, and she was also showing signs that she was starting to understand other cards as well (for various videos and games we play with her).
So at the PECS session, I set up her binder with three cards on it (nose, spoon, and ‘milk’). She selected the milk card and handed it to me. I held it up to show her, said ‘milk’, and then handed her the cup with a couple of ounces of milk in it. While she drank the 'milk' I put the binder out again with the soother card. When she finished, she handed me the cup, looked over, grabbed the soother card, and handed it to me. I again showed her the card, said ‘soother’ and gave it to her. So far so good.
The therapist then said, what would happen if you gave her a choice of milk or soother, and then had her choose the right item after giving me the card? I was confident that she would get this right. We put both cards on the binder, and she pulled the milk card. I then showed her the card and identified it, and put both options in front of her. She scooped up the soother and walked away.
We repeated this three times, and each time she selected the milk card and then took the soother. Apparently ‘milk’ is the first card to choose in any situation, followed by soother, and then by something else.
We’ll keep working on this one. At least she can distinguish between the cards. Now we just have to link them to the correct object/action.
---
When the Bear goes to IBI we always pack her a snack. Today was sliced organic strawberries and kiwi. The goal is to get her to use a pincer grasp to pick up the fruit and eat it. If they put the food in her hand she will put it in her mouth, but getting her to pick it up herself is not easy, and a pincer grasp is harder still. Most of the time she will grab the tutor’s hand and guide it to the bowl to signal that she wants them to pick up the food for her and put it in her hand. We and they also put food on her spoon and try to get her (guided) to put it in her mouth. She has never attempted to do this by herself.
Today, totally unprompted, she reached over by herself and picked up the spoon, which had a piece of fruit on it, and put it in her mouth, as if she had been doing it for years. Her school is closed for vacation for the next two weeks. In the meantime, you can bet that she will have lots of access to a bowl of sliced fruit and a spoon.
Sometimes you get a win, and sometimes you don’t. I’ll put this week in the win column. Tonight we’re off to Canada’s Wonderland to celebrate.
Saturday, August 12, 2006
Five Weird Things
As part of the meme going around the bloggosphere, Wade ‘tagged’ me to identify five weird things about myself. Narrowing down the list was hard – e.g. do the giant one-eyed white cat (now deceased), and the constant presence of Lithuanians in my life count? Where is Lithuania, anyway? (Don’t worry, I know exactly where it is!) But here goes:
1. I can’t swim. Yes, I know Canada is cold at least one month of the year, but it does have a lot of lakes, ocean shoreline, swimming pools, etc., plus the colony of Florida, so the opportunity is there. Despite repeated attempts to learn, I cannot master the breathing technique involved. I love the water, I love to canoe (and am quite fast), I’ve done more than a little portaging and whitewater, and can finally make my way across the length of a small backyard pool. But that is my limit. Fortunately, Momma Bear has every lifeguard designation imaginable. The Bear loves the water, so we’ll see who’s genes she has inherited.
2. I like to travel on my own. While I also enjoy vacations with others, and have gone away with family, large groups, small groups, girlfriends, and now Momma Bear (not yet with the Bear, but soon), I’m quite comfortable going on my own. I went to Israel by myself and worked on a kibbutz for four months (not a southern kibbutz where one hangs out with other non-Israelis, but a smaller northern kibbutz where I was at times the only volunteer). I’ve also backpacked and EurRailed around Europe by myself, from Norway and Finland to Greece and Italy, including through what was once East Germany and Yugoslavia. I also studied abroad with a girlfriend, and when we broke up I again went off traveling by myself for a bit. Whenever I wanted company it was never an issue to meet people and temporarily travel with them, but when it was time to move on, so be it. I would feel quite comfortable doing the same today, but confess that I would much rather go with the Bear and Momma Bear.
3. I love cartoons. I’ll date myself by mentioning The Flintstones, The Jetsons, Tom & Jerry, Bugs Bunny (for which I will drop almost anything), Tweety & Sylvester, Yosemite Sam, the Roadrunner & Wile E Coyote, etc. I’m not so big on the more up-to-date stuff, but I will confess to having to be dragged out of Entertainment departments in stores when 'Ice Age' or 'Monsters, Inc' have been playing.
4. I designed our house. I don’t mean rough sketches, but a proper blueprint-ready design. When we were ready to trade up, my wife and I hunted on weekends for a house that we liked. She also went looking during the week. For two years she scoured our region (we had the gas bills and mileage to prove it). When we couldn’t find anything, she switched to looking for land so that we could build to our own design. Once we found land, we went looking for a design, but again couldn’t find anything that was ‘just right’, so I got a couple of good books on design, figured out how to do it (including sizing – e.g. size rooms to match construction material sizing to keep costs in line), and drew up my own design (obviously with input and approval from Momma Bear). When done, we found a contractor to build it, and he turned it into final blueprints first. He didn’t have to change a thing.
My only regret is that the master bedroom is downstairs, while the rest of the bedrooms are upstairs. The theory was that the kids would be five and under for five years and teenagers for seven. I’m paying for that now.
5. I won a weight loss contest, losing 46 lbs in 77 days. We had a contest at work to see who could lose the largest percentage of their starting body weight. The contest ran from early January to end of March. Everyone put in $100 each, and the person who won took the pot, with second and third place getting their money back. There were twelve of us. I weighed in at 197 lbs (I’m 6 feet tall). It was during the time that we were building the house, and I wanted to use the money to pay for a Jaccuzi. I’m also way too cheap to give away $100. So I dieted (proper nutrition in small quantities and vitamins), exercised (at one point I was walking up 100 floors per day – yes, 100 floors), and the weight melted away. I had no idea how the others were doing except during the two early weigh-ins (in which a couple of others were close), so I just kept going. By the end of the contest I was down to 151 lbs, which in perspective is four pounds less than I weighed in undergrad. No one else was even close. Yes, I can be a bit competitive.
I used the money to buy a two person Jaccuzi (well, the contest paid for most of it). We’ve used the Jacuzzi three times in five years (all in the first two months). Today it holds the Bear’s bath tub, where my wife baths her. I now weigh around 180 lbs, having put most of the weight back on within three months.
So, now it’s my turn to tag three people. I tag:
María Luján (I’ll guest host if you want, but I see no reason that you should escape this)
Kristina
Shawn
Sorry all.
And Wade, starting a new meme tradition, in retaliation I just signed you up for the Lithuanian Wine of the Month club. ;-)
1. I can’t swim. Yes, I know Canada is cold at least one month of the year, but it does have a lot of lakes, ocean shoreline, swimming pools, etc., plus the colony of Florida, so the opportunity is there. Despite repeated attempts to learn, I cannot master the breathing technique involved. I love the water, I love to canoe (and am quite fast), I’ve done more than a little portaging and whitewater, and can finally make my way across the length of a small backyard pool. But that is my limit. Fortunately, Momma Bear has every lifeguard designation imaginable. The Bear loves the water, so we’ll see who’s genes she has inherited.
2. I like to travel on my own. While I also enjoy vacations with others, and have gone away with family, large groups, small groups, girlfriends, and now Momma Bear (not yet with the Bear, but soon), I’m quite comfortable going on my own. I went to Israel by myself and worked on a kibbutz for four months (not a southern kibbutz where one hangs out with other non-Israelis, but a smaller northern kibbutz where I was at times the only volunteer). I’ve also backpacked and EurRailed around Europe by myself, from Norway and Finland to Greece and Italy, including through what was once East Germany and Yugoslavia. I also studied abroad with a girlfriend, and when we broke up I again went off traveling by myself for a bit. Whenever I wanted company it was never an issue to meet people and temporarily travel with them, but when it was time to move on, so be it. I would feel quite comfortable doing the same today, but confess that I would much rather go with the Bear and Momma Bear.
3. I love cartoons. I’ll date myself by mentioning The Flintstones, The Jetsons, Tom & Jerry, Bugs Bunny (for which I will drop almost anything), Tweety & Sylvester, Yosemite Sam, the Roadrunner & Wile E Coyote, etc. I’m not so big on the more up-to-date stuff, but I will confess to having to be dragged out of Entertainment departments in stores when 'Ice Age' or 'Monsters, Inc' have been playing.
4. I designed our house. I don’t mean rough sketches, but a proper blueprint-ready design. When we were ready to trade up, my wife and I hunted on weekends for a house that we liked. She also went looking during the week. For two years she scoured our region (we had the gas bills and mileage to prove it). When we couldn’t find anything, she switched to looking for land so that we could build to our own design. Once we found land, we went looking for a design, but again couldn’t find anything that was ‘just right’, so I got a couple of good books on design, figured out how to do it (including sizing – e.g. size rooms to match construction material sizing to keep costs in line), and drew up my own design (obviously with input and approval from Momma Bear). When done, we found a contractor to build it, and he turned it into final blueprints first. He didn’t have to change a thing.
My only regret is that the master bedroom is downstairs, while the rest of the bedrooms are upstairs. The theory was that the kids would be five and under for five years and teenagers for seven. I’m paying for that now.
5. I won a weight loss contest, losing 46 lbs in 77 days. We had a contest at work to see who could lose the largest percentage of their starting body weight. The contest ran from early January to end of March. Everyone put in $100 each, and the person who won took the pot, with second and third place getting their money back. There were twelve of us. I weighed in at 197 lbs (I’m 6 feet tall). It was during the time that we were building the house, and I wanted to use the money to pay for a Jaccuzi. I’m also way too cheap to give away $100. So I dieted (proper nutrition in small quantities and vitamins), exercised (at one point I was walking up 100 floors per day – yes, 100 floors), and the weight melted away. I had no idea how the others were doing except during the two early weigh-ins (in which a couple of others were close), so I just kept going. By the end of the contest I was down to 151 lbs, which in perspective is four pounds less than I weighed in undergrad. No one else was even close. Yes, I can be a bit competitive.
I used the money to buy a two person Jaccuzi (well, the contest paid for most of it). We’ve used the Jacuzzi three times in five years (all in the first two months). Today it holds the Bear’s bath tub, where my wife baths her. I now weigh around 180 lbs, having put most of the weight back on within three months.
So, now it’s my turn to tag three people. I tag:
María Luján (I’ll guest host if you want, but I see no reason that you should escape this)
Kristina
Shawn
Sorry all.
And Wade, starting a new meme tradition, in retaliation I just signed you up for the Lithuanian Wine of the Month club. ;-)
Tuesday, July 25, 2006
Thoughts on Prenatal Genetic Testing
One of the latest controversies within the community of those touched by autism is that of prenatal genetic testing. Some fear that this testing will lead to the termination of pregnancies of ASD fetuses, with the result being in effect the elimination of future generations of potentially ASD children. As such, they oppose the development of such tests, and are campaigning to oppose their use. I am not opposed to such tests, or any prenatal genetic testing, for a number of reasons.
When ‘we’ were pregnant, as part of the routine ultrasound process we had a nuchal translucency test, plus the fetal nose scan. The results were negative. We also had the AFP/Triple Screen test. The results came back positive. We received the call to come in for counseling.
During the counseling process we were informed that the results of the AFP/Triple Screen indicated that our baby had an elevated risk of having Down Syndrome. The risk was not ‘through the roof’, but it was definitely there. The next step would be to conduct an amniocentesis, i.e. the definitive test. We were informed that the reported risk of this test was fetal death in up to 1% of cases. How did we want to proceed?
Over the next week, we did some research on Down Syndrome and discussed the risks and issues, and came to the conclusion that we did not want any further testing. The Bear was originally a twin, and we had already lost the other baby at around 11 weeks. We did not want to risk losing her too. We had learned enough about Down Syndrome – on our own, not from counseling - to know that we would also be happy with a Down Syndrome child, and that was the end of the matter. Admittedly, there was a bit of nervousness around delivery time (‘acceptance’ does not necessarily equate to ‘preference’), but my wife delivered a healthy baby who was perfect in every way.
For what it is worth, I am not comfortable with abortion. I can’t say that I would never opt for this choice, but I can say that whenever the possibility of having to make the choice has been anticipated the answer has always been ‘no’. And when the potential existed for having a Down Syndrome child, we rejected the choice, and would do the same for the possibility of having an autistic child.
But, the fact that I am not comfortable with such a choice does not mean that I would deny it to others. I do believe that reproductive choice is a right (at least in the first trimester and possibly early in the second, cases of 'moral hazard', and in cases where the mother’s life is at risk), even if it is a right that I would not choose to exercise. Thank you, but I do not need comments on my lack of morality for feeling this way, if you hold a more anti-abortion viewpoint. From what I can gather, my views are solidly within the majority, regarding the rights of others to choose (although that is not why I hold them), and the purpose of this post is not to debate my views on abortion per se, but rather, to discuss prenatal genetic testing and its consequences.
If ‘choice’ is a right, then it is a right that exists regardless of how comfortable I am with how others choose to use it. The rights of others (e.g. reproductive choice, freedom of speech, freedom of assembly, freedom of worship, democratic rights) are not conditional upon my approval of how they are exercised, but only on the condition that they are exercised within the bounds of the law. I do not have to like how others exercise their rights, any more than others have to like how I choose to do so. But I am required to tolerate them.
Beyond reproductive choice, most prenatal testing has potential benefits that are often overlooked. Testing can lead to increased medical intervention during the prenatal period, better preparedness (e.g. learning) on the part of parents and caregivers, plus time to come to terms with one’s feelings and learn acceptance. As one mother wrote in an Epinion that I highly recommend reading,
"I would ask you to at least consider the benefits of prenatal testing. Knowledge is indeed power. By knowing about potential problems, you give your child the best chance at a safe and healthy delivery and start in life."
In the case of autism there may or may not be any interventions that one can take – depending on beliefs - to lessen the risks or severity, but preparedness and adjustment are both valuable in their own right, as is the knowledge to plan early intervention, increased stimuli and interaction, etc.
Some would argue that this early ‘knowing’ can be postponed until the post-natal period (specifically to rule out eugenic abortion), but if genetic testing is available at all then it will be available on a prenatal basis. Arguing that it should only be available on a post-natal basis is an unrealistic and unrealizable limitation. And the delay pushes acceptance and preparedness into this same period, delaying what for many will be a necessary period of adjustment (even if we don’t always want to admit that adjustment is often required).
Another reason I do not oppose prenatal genetic testing is that I think that testing is inseparable from genetic research. Once science understands the genetic basis for an outcome, I don’t believe that there is any way to prevent the development of a genetic test, even if such a test was not the primary goal of research. And an understanding of the genetics of autism is valuable in its own right, leading to greater understanding, better and earlier diagnosis and intervention, and amelioration of the negative consequences of autism (e.g. communications issues). Some have argued that autism may be a social construct, but some of its disabilities are very real, as may be some medical consequences (i.e. the suggested co-morbidities). To the extent that they are not a required part of autistic thought (and since not all with ASD have them, presumably they are not ‘required’) then they are legitimate targets for intervention and amelioration.
Finally, I’m not sure that a definitive genetic test for autism will ever exist. As I discussed in an earlier post, in MZ twins, if one is ASD then the chance of the other also being ASD is 60% (92% for the broader autism phenotype). The fact that the concordance rate is not 100% suggests that some other factor or factors may also be involved. Thus, even a positive result on a genetic test does not mean that autism is a foregone conclusion. This is another reason to continue genetic research, to discover the limits of genetic (and epigenetic) predictability.
Instead of attempting to ban prenatal genetic testing, I would recommend that it should instead be regulated - not in terms of availability, but rather in terms of requiring the availability of counseling and support. As I mentioned above, when we had to choose, we researched the issue ourselves. Our counseling was along the lines of ‘you have x number of days to decide’, rather than ‘here’s what the future may hold’. I would recommend that genetic testing should include the option of counseling as a matter of course, not just on prenatal options, but also on the joys, trials and tribulations of raising special needs children, letting people know that a) life goes on and b) can be very rewarding. We would have found this information helpful. Probably one of the biggest issues parents encounter is fear of the unknown. Good counseling can help mitigate some of that fear.
One of the arguments used against testing is that after the development of a Down Syndrome test, 90% of detected Down Syndrome fetuses are aborted. The fear is that the same would happen with an autism test. To me this is a defeatist argument. Through education of society, counseling of parents, progress in terms of interventions to mitigate the negative consequences of autism, improved teaching methods and methodologies to help autistic children learn, and proof of better outcomes, we should be able to change that number. Rather than attempting to deny parents a test that is coming anyway, or deny them their legal right to choose because we don’t like how they may exercise it, a more worthy goal is to provide them with hope and the likelihood of a better outcome.
But this is just one person’s opinion.
When ‘we’ were pregnant, as part of the routine ultrasound process we had a nuchal translucency test, plus the fetal nose scan. The results were negative. We also had the AFP/Triple Screen test. The results came back positive. We received the call to come in for counseling.
During the counseling process we were informed that the results of the AFP/Triple Screen indicated that our baby had an elevated risk of having Down Syndrome. The risk was not ‘through the roof’, but it was definitely there. The next step would be to conduct an amniocentesis, i.e. the definitive test. We were informed that the reported risk of this test was fetal death in up to 1% of cases. How did we want to proceed?
Over the next week, we did some research on Down Syndrome and discussed the risks and issues, and came to the conclusion that we did not want any further testing. The Bear was originally a twin, and we had already lost the other baby at around 11 weeks. We did not want to risk losing her too. We had learned enough about Down Syndrome – on our own, not from counseling - to know that we would also be happy with a Down Syndrome child, and that was the end of the matter. Admittedly, there was a bit of nervousness around delivery time (‘acceptance’ does not necessarily equate to ‘preference’), but my wife delivered a healthy baby who was perfect in every way.
For what it is worth, I am not comfortable with abortion. I can’t say that I would never opt for this choice, but I can say that whenever the possibility of having to make the choice has been anticipated the answer has always been ‘no’. And when the potential existed for having a Down Syndrome child, we rejected the choice, and would do the same for the possibility of having an autistic child.
But, the fact that I am not comfortable with such a choice does not mean that I would deny it to others. I do believe that reproductive choice is a right (at least in the first trimester and possibly early in the second, cases of 'moral hazard', and in cases where the mother’s life is at risk), even if it is a right that I would not choose to exercise. Thank you, but I do not need comments on my lack of morality for feeling this way, if you hold a more anti-abortion viewpoint. From what I can gather, my views are solidly within the majority, regarding the rights of others to choose (although that is not why I hold them), and the purpose of this post is not to debate my views on abortion per se, but rather, to discuss prenatal genetic testing and its consequences.
If ‘choice’ is a right, then it is a right that exists regardless of how comfortable I am with how others choose to use it. The rights of others (e.g. reproductive choice, freedom of speech, freedom of assembly, freedom of worship, democratic rights) are not conditional upon my approval of how they are exercised, but only on the condition that they are exercised within the bounds of the law. I do not have to like how others exercise their rights, any more than others have to like how I choose to do so. But I am required to tolerate them.
Beyond reproductive choice, most prenatal testing has potential benefits that are often overlooked. Testing can lead to increased medical intervention during the prenatal period, better preparedness (e.g. learning) on the part of parents and caregivers, plus time to come to terms with one’s feelings and learn acceptance. As one mother wrote in an Epinion that I highly recommend reading,
"I would ask you to at least consider the benefits of prenatal testing. Knowledge is indeed power. By knowing about potential problems, you give your child the best chance at a safe and healthy delivery and start in life."
In the case of autism there may or may not be any interventions that one can take – depending on beliefs - to lessen the risks or severity, but preparedness and adjustment are both valuable in their own right, as is the knowledge to plan early intervention, increased stimuli and interaction, etc.
Some would argue that this early ‘knowing’ can be postponed until the post-natal period (specifically to rule out eugenic abortion), but if genetic testing is available at all then it will be available on a prenatal basis. Arguing that it should only be available on a post-natal basis is an unrealistic and unrealizable limitation. And the delay pushes acceptance and preparedness into this same period, delaying what for many will be a necessary period of adjustment (even if we don’t always want to admit that adjustment is often required).
Another reason I do not oppose prenatal genetic testing is that I think that testing is inseparable from genetic research. Once science understands the genetic basis for an outcome, I don’t believe that there is any way to prevent the development of a genetic test, even if such a test was not the primary goal of research. And an understanding of the genetics of autism is valuable in its own right, leading to greater understanding, better and earlier diagnosis and intervention, and amelioration of the negative consequences of autism (e.g. communications issues). Some have argued that autism may be a social construct, but some of its disabilities are very real, as may be some medical consequences (i.e. the suggested co-morbidities). To the extent that they are not a required part of autistic thought (and since not all with ASD have them, presumably they are not ‘required’) then they are legitimate targets for intervention and amelioration.
Finally, I’m not sure that a definitive genetic test for autism will ever exist. As I discussed in an earlier post, in MZ twins, if one is ASD then the chance of the other also being ASD is 60% (92% for the broader autism phenotype). The fact that the concordance rate is not 100% suggests that some other factor or factors may also be involved. Thus, even a positive result on a genetic test does not mean that autism is a foregone conclusion. This is another reason to continue genetic research, to discover the limits of genetic (and epigenetic) predictability.
Instead of attempting to ban prenatal genetic testing, I would recommend that it should instead be regulated - not in terms of availability, but rather in terms of requiring the availability of counseling and support. As I mentioned above, when we had to choose, we researched the issue ourselves. Our counseling was along the lines of ‘you have x number of days to decide’, rather than ‘here’s what the future may hold’. I would recommend that genetic testing should include the option of counseling as a matter of course, not just on prenatal options, but also on the joys, trials and tribulations of raising special needs children, letting people know that a) life goes on and b) can be very rewarding. We would have found this information helpful. Probably one of the biggest issues parents encounter is fear of the unknown. Good counseling can help mitigate some of that fear.
One of the arguments used against testing is that after the development of a Down Syndrome test, 90% of detected Down Syndrome fetuses are aborted. The fear is that the same would happen with an autism test. To me this is a defeatist argument. Through education of society, counseling of parents, progress in terms of interventions to mitigate the negative consequences of autism, improved teaching methods and methodologies to help autistic children learn, and proof of better outcomes, we should be able to change that number. Rather than attempting to deny parents a test that is coming anyway, or deny them their legal right to choose because we don’t like how they may exercise it, a more worthy goal is to provide them with hope and the likelihood of a better outcome.
But this is just one person’s opinion.
Friday, June 30, 2006
Is The Bear Exhibiting 'Theory of Mind'?
The other day, the Bear, Momma Bear and I were watching a video together – Baby Einstein’s Baby da Vinci™. In one scene there is an owl, located in front of some trees, who hoots a couple of times. A second owl comes up within the trees, unseen by the first owl. The second owl hoots, and then ducks and hides, while the first owl turns towards the sound, looking for its source. The second owl appears in a different location - again unseen by the first owl - watches the first owl for a couple of seconds, and hoot and hides again. This occurs a third time, and then while the first owl is looking in the last place he heard the hoot, the second owl 'walks' up behind him, taps him on the shoulder, and they both giggle. Fade to black.
The Bear thinks this is absolutely hysterical. She giggles away, gets excited, flaps, climbs up on the table we put in front of the TV to keep her from sitting too close to the screen (sigh), giggles and flaps again, and then climbs down and walks over to Momma Bear or myself to either pull our hand or even hand us the remote to rewind the scene so that she can see the whole thing again. This is repeated over and over until she tires of it.
A subsequent scene involves two hippos. The first hippo yawns. The second hippo begins a yawn, and appears to produce a noise like an elephant’s trumpeting. Both hippos are startled. Again the first hippo yawns. The second hippo yawns, with the same elephant sound as a result, and the same sense of surprise. Then the second hippo yawns first, and yawns normally. The first hippo yawns and produces the same elephant sound. Both hippos look at each other, shake their heads, and walk away. Once they are gone, up pops an elephant, giggling and trumpeting away, pleased with its joke. Fade to black.
In this example too the Bear cracks up, and while she is not as insistent on getting us to rewind this segment to watch it again, we end up repeating the scene a few times.
I’ve also described in a previous post an example of playing peek-a-boo with the Bear, in which she clearly outsmarted me (not that you have to get up too early in the morning to accomplish this) by turning the tables and sneaking up on me.
It struck me that the common thread between these three occasions was that the Bear was able to understand the difference in perception between the various characters (in the latter case the characters being the Bear and me), i.e. that each saw the world differently, and drew humour from the differences in perception. Then it occurred to me, are these not demonstrations of Theory of Mind?
From Wikipedia, Theory of Mind is generally described as:
“a specific cognitive capacity: the ability to understand that others have beliefs, desires and intentions that are different from one's own.”
Further:
“This theory of mind covers two separate concepts:
1. Gaining the understanding that others also have minds, with different and separate beliefs, desires, mental states, and intentions
2. Being able to form operational hypotheses (theories), or mental models, with a degree of accuracy, as to what those beliefs, desires, mental states, and intentions are.“
The Bear has very recently turned three (Happy Birthday Bear!), so I should not be surprised if she did not yet demonstrate Theory of Mind.
A common ToM test is the Sally-Ann test:
"The experimenter uses two dolls, "Sally" and "Anne." Sally has a basket; Anne has a box. Experimenters show their subjects (usually children) a simple skit, in which Sally puts a marble in her basket and then leaves the scene. While Sally is away, Anne takes the marble out of Sally's basket and puts it into her box. Sally then returns and the children are asked where they think she will look for her marble. A child is said to "pass" the test if he realizes that Sally will first look inside her basket before realizing that her marble isn't there. This is based upon their developing the notion that she "cannot watch..."
"Normal children under the age of four (emphasis added), and most autistic children (of all ages), will cheerfully and confidently answer "Anne's box"-- they do not conclude that Sally cannot know that her marble has been moved."
"Children who pass the test (presumably) understand that there are two different sets of beliefs:
• their own beliefs, based on what they have personally seen, heard, remembered, imagined, reasoned, etc., and
• the beliefs of others, based on what they have seen, heard, etc.."
Those who fail the test are said by some psychologists to lack a ‘theory of other people’s minds’, although there are problems with the test (discussed in the link) that may call this interpretation into question.
In the three examples above, does the Bear exhibit an understanding that the various characters see the world differently?
In the owl example, while she has a clear sense of excitement and anticipation, she does not react when the first owl hoots. She also does not react when the second owl repeatedly appears. It is only when the second owl hoots and hides that she really starts to laugh, suggesting – to me at least - that she clearly understands that the joke is the deception of the first owl by the second owl. She is also amused when the joke is revealed, but not as much as when the prank is being executed. To understand this scene, I’d suggest that she has to understand that the first owl has a different perception of the world than either the second owl or the viewer.
In the second example, she gets excited when the hippos appear to produce the elephant sound, and when the elephant appears, but she does not appear to have a particularly strong reaction when the elephant trumpets triumphantly (i.e. I don't think it is the elephant trumpet itself that she is reacting to). This example is a more open to question, in that she may be reacting to the incongruity of the elephant sound emanating from the hippo, but I really think she is getting the joke, that the elephant is deceiving the hippos (to whom the joke is never ultimately revealed) and that therefore the two sets of protagonists see the world quite differently.
In the third example, I’d suggest that the Bear understands that I am visibly ‘sneaking up’ on her, and by surreptitiously sneaking up on me she understands that she and I do not perceive the world in the same way. Otherwise, there would be no point in sneaking up on me because I would know that this is occurring.
So, am I overanalyzing, or is the Bear demonstrating Theory of Mind, based on the notion of ‘cannot watch’ mentioned above? If she is, then this demonstrates that a child diagnostically labeled as ‘autism, at the severe end of the spectrum’ is capable of Theory of Mind, and at a young age. Given that 'normal' children don’t usually pass the Sally-Anne test until four (which may be an issue with the test as much as with their cognitive abilities), this would be an interesting result.
If she is not yet demonstrating Theory of Mind in these examples, I would not interpret this as meaning that she is not capable of this ability and/or would not be capable of demonstrating it in the future. Any issues she, and other autistics, demonstrate in this area could presumably be related to sensory integration issues as much or more than due to cognitive weaknesses. If one has difficulty processing incoming stimuli, especially input from other peoples’ faces, then it stands to reason that the ability to analyze the expressions of others - as cues to their state of mind - may be impacted long before this ability fails at a cognitive hurdle.
Those are my thoughts. I’m interested in hearing yours.
Tuesday, June 13, 2006
Moderate Does Not Mean Neutral
There have been occasional comments on and off from the neurodiversity side that refer negatively to some bloggers and/or commenters as being moderate or neutral. This is the latest one to catch my attention:
Some people don’t believe in “rocking the boat,” they want to give themselves the superficial sheen of “neutrality” and portray themselves as being on the moral high-ground by staking out their imaginary “middle ground.” I think they are part of the problem, myself.
I’m guessing that they are not aimed at me personally – I recognize that my profile is not high enough to gain enough notice (that’s not a lament, just a statement) – but regardless, I thought I’d reply on behalf of at least this one moderate bio-med parent.
So, let’s start with a couple of definitions.
First – Neutral:
1. Not aligned with, supporting, or favoring either side in a war, dispute, or contest.
2. Belonging to neither side in a controversy: on neutral ground.
3. Belonging to neither kind; not one thing or the other.
Second - Moderate:
As an adjective:
1. Being within reasonable limits; not excessive or extreme: a moderate price.
2. Not violent or subject to extremes; mild or calm; temperate: a moderate climate.
3. Opposed to radical or extreme views or measures, especially in politics or religion.
As a noun:
One who holds or champions moderate views or opinions, especially in politics or religion.
So, let’s note the difference: neutral means not aligned with, belonging to neither side in a controversy. Moderate means being within reasonable limits, not subject to extremes. To be clear, moderate does not mean neutral, and I am definitely not neutral.
For the record, I consider myself a moderate bio-med. I draw a distinction between autistic thought and autistic disabilities or ‘issues’. I do not believe that there is anything wrong with autistic thought per se, and I am not seeking to cure my daughter of this type of thought. In this I believe I am in broad agreement with those holding a neurodiversity point of view. For the record, I myself am probably part of the broader autism phenotype (BAP), and share more than a few characteristics with my daughter. These traits, including an ability to see the world a little differently than most, have served me well. The difference between us is that I do not seem to have incurred any significant disability (aside from an occasional social cluelessness) to go along with these traits. But my daughter has, and I am seeking to ‘cure’ her of her communications and sensory integration difficulties, believing that they drive her autistic disabilities. In this I am much closer to the mainstream and ‘cure’ side of the autism debate.
As to etiology, I believe that there is more than one cause for autism, and that autism is probably more than one ‘disorder’. My previous posts demonstrate that I clearly believe that there is an underlying genetic vulnerability, but I also believe that there is evidence that ‘something more’ is often required. In the Bear’s case I believe that the ‘something more’ is likely immune/auto-immune related (these issues are in the family), but I am also open to the possibility that it is environmental (defined broadly). I strongly support research efforts to find the causes of autism, and consider myself in opposition to those who do not support this search.
Having said that, I also oppose poorly conducted science, which I believe does not serve anyone well. Exploring a reasonable hypothesis that does not have mainstream support is not poor science. Exploring hypotheses without using the scientific method and without having the goal of arriving at replicable results that can withstand peer review is poor science. Some on the treatment side have conducted poor science, and I believe that the result has been an overstatement of results and a damaging loss of credibility that may slow the ultimate search for answers. I also think that the ‘all autism = mercury’ approach has hampered other research that may find other causes, and I disagree with those that take this one-size-fits-all approach to autism research.
As for treatment, I am definitely on the bio-med side of the debate. We have tested our daughter, using Ontario government health system labs and the Kennedy Krieger Institute, and have found clear medical and nutritional issues that are obvious to mainstream medicine (and for which our very mainstream pediatrician has referred us to specialists). One of the things I am grateful to Kev for is a statement he wrote in 2005 (and I’m paraphrasing) that if an issue is real then it should be detectable by a reputable mainstream lab. We have followed this approach, and mainstream testing has identified – among other things - serious nutritional issues related in part to absorption deficiencies in my daughter. We have worked to correct these issues, using diet and supplements (under the care of a PhD in nutrition) in dosages that take into account RDA limits, and have been successful in controlling and even eliminating some medical issues. We have also seen increased development in our daughter during this time, but I cannot guarantee that the bio-med treatments are the sole source of this improvement.
We do not chelate our child, and to be honest, the process scares me. For the record, my daughter has some potential heavy metal issues (not mercury) that showed up on a mainstream test (discovered by accident – we were testing for essential minerals and ticked the toxic panel as an afterthought). Our approach has been to monitor this and try to naturally rebuild the Bear's detox system rather than use chelation. But I do not oppose others using chelation as long as they have clearly dealt with other bio-medical issues first, have tested their child and found the presence of heavy metals, and are careful to conduct chelation under qualified and experienced supervision and with regular testing/monitoring performed by reputable labs to ensure that no harm is being done.
I am also on the interventionist side in terms of education. My daughter is in an IBI program five mornings per week. As I posted previously, “The goal of her program is not to get her to ‘pass as NT’ - before she was enrolled, the program head very clearly told us that the IBI program would not make her ‘normal’. Instead, it is to teach her skills that will enable her to better and more independently function in the world. Absolutely no effort is expended to get her to act ‘normal’. Instead, she is developing her gross and fine motor skills (e.g. learning how to walk up and down stairs or turn a doorknob), looking at books, learning to communicate through PECS, etc.”
Further, we don’t use IBI to stop her from stimming, since ” we view her stims as a method of communication, self-orientation, and comfort. Her IBI program feels the same way. Instead of trying to make my daughter look NT, they’re trying to teach her the skills that will help her as a human being, regardless of her neuro-orientation.” And as part of the program, ”IBI taught my daughter the first two stages of PECS, as well as helping her to understand the purpose and value of gesturing to communicate. When she gestures, they follow her lead, and they believe that it is important to encourage this. She can now take someone by the hand and lead them a considerable distance to the object of her desire and then communicate to them what she wants, despite being unable to form a single word. As she learns to discriminate between the PECS cards her communications abilities will improve further. Note that none of this is making her any less autistic, but all of it is enabling her to better interact with those around her, make her needs known, and get them met – including her need to socialize and have fun.”
We also have access to a speech and language program, that we’re currently using to teach the Bear stage three of PECS (discrimination), which she is picking up very quickly. Since she cannot talk, we figure that we need to find her another way to communicate, and through both PECS and gesturing she can usually make herself quite well understood. We also had access to OT services, but this access is petering out now that she is nearly three years old. We do have a couple of follow-up sessions due to the generosity of our OT provider, but would welcome more OT support if we can access it.
As for some of the public issues regarding autism, e.g. demonizing autism, the Autism Speaks video or the murder of Katie McCarron, again I am clearly not neutral. My daughter has every right to the same degree of respect and security of person as anyone else, and I oppose any effort to demean, belittle, disrespect, or threaten her because she is autistic. While I do not condone the use of tragedy to falsely label others or to support ideological goals (sorry, but supporting an interventionist or even cure approach to autism does not equate with condoning or justifying murder, and it is insulting to attempt to make or insinuate this link), I will stand with those who respect my daughter and support her rights, and speak out against those who do not.
So, overall we are firmly on the interventionist side of the autism debate, although moderate in application, and - we believe - respectful of our daughter. We are not intervening to ‘cure’ autism, but to treat and hopefully ameliorate the issues that some believe are co-morbidities and some (including us) suspect are the drivers of autistic disabilities. We firmly believe that if we can achieve this our daughter will still be autistic in thought, part of the BAP, and we have absolutely no issue with this – again, our issue is with autistic disabilities, not autistic thought. If our daughter retains her ‘severe autism’ diagnosis then we will accept that too. Our joy is not the Joy of Autism, but the Joy of the Bear, and she will continue to be our joy regardless of her outcome.
What I find interesting is that moderation (not necessarily my moderation, but moderation in general) seems to be threatening to some. My guess is that moderation is probably a greater threat to the ideological poles than their polar opponents. There is a history of extremes targeting moderates to turn situations into a clear black vs. white, ‘us’ vs. ’them’ issues, eliminating any room for diversity of viewpoints or compromise. It is easy to caricature or ridicule an extremist opponent (e.g. ‘all autism = mercury’ is downright silly), but it is harder to ridicule a moderate interventionist approach backed by replicable medical tests and following a moderate educational approach based on what many would consider common sense. In this, moderates could therefore be considered the greater threat.
I’m not saying that my approach is necessarily correct, or that others should follow it. What I am saying though is that it is a reasonable attempt, backed by mainstream derived evidence, to follow a common sense path to help my daughter grow into the person that she is in the process of becoming, and we have a right to follow it. I’m not saying that everyone has to agree, but I have the right to hold my opinions, they are no threat to anyone else, and they do not make people like me ‘part of the problem’.
I’m not neutral. I’m on the side of the Bear.
Some people don’t believe in “rocking the boat,” they want to give themselves the superficial sheen of “neutrality” and portray themselves as being on the moral high-ground by staking out their imaginary “middle ground.” I think they are part of the problem, myself.
I’m guessing that they are not aimed at me personally – I recognize that my profile is not high enough to gain enough notice (that’s not a lament, just a statement) – but regardless, I thought I’d reply on behalf of at least this one moderate bio-med parent.
So, let’s start with a couple of definitions.
First – Neutral:
1. Not aligned with, supporting, or favoring either side in a war, dispute, or contest.
2. Belonging to neither side in a controversy: on neutral ground.
3. Belonging to neither kind; not one thing or the other.
Second - Moderate:
As an adjective:
1. Being within reasonable limits; not excessive or extreme: a moderate price.
2. Not violent or subject to extremes; mild or calm; temperate: a moderate climate.
3. Opposed to radical or extreme views or measures, especially in politics or religion.
As a noun:
One who holds or champions moderate views or opinions, especially in politics or religion.
So, let’s note the difference: neutral means not aligned with, belonging to neither side in a controversy. Moderate means being within reasonable limits, not subject to extremes. To be clear, moderate does not mean neutral, and I am definitely not neutral.
For the record, I consider myself a moderate bio-med. I draw a distinction between autistic thought and autistic disabilities or ‘issues’. I do not believe that there is anything wrong with autistic thought per se, and I am not seeking to cure my daughter of this type of thought. In this I believe I am in broad agreement with those holding a neurodiversity point of view. For the record, I myself am probably part of the broader autism phenotype (BAP), and share more than a few characteristics with my daughter. These traits, including an ability to see the world a little differently than most, have served me well. The difference between us is that I do not seem to have incurred any significant disability (aside from an occasional social cluelessness) to go along with these traits. But my daughter has, and I am seeking to ‘cure’ her of her communications and sensory integration difficulties, believing that they drive her autistic disabilities. In this I am much closer to the mainstream and ‘cure’ side of the autism debate.
As to etiology, I believe that there is more than one cause for autism, and that autism is probably more than one ‘disorder’. My previous posts demonstrate that I clearly believe that there is an underlying genetic vulnerability, but I also believe that there is evidence that ‘something more’ is often required. In the Bear’s case I believe that the ‘something more’ is likely immune/auto-immune related (these issues are in the family), but I am also open to the possibility that it is environmental (defined broadly). I strongly support research efforts to find the causes of autism, and consider myself in opposition to those who do not support this search.
Having said that, I also oppose poorly conducted science, which I believe does not serve anyone well. Exploring a reasonable hypothesis that does not have mainstream support is not poor science. Exploring hypotheses without using the scientific method and without having the goal of arriving at replicable results that can withstand peer review is poor science. Some on the treatment side have conducted poor science, and I believe that the result has been an overstatement of results and a damaging loss of credibility that may slow the ultimate search for answers. I also think that the ‘all autism = mercury’ approach has hampered other research that may find other causes, and I disagree with those that take this one-size-fits-all approach to autism research.
As for treatment, I am definitely on the bio-med side of the debate. We have tested our daughter, using Ontario government health system labs and the Kennedy Krieger Institute, and have found clear medical and nutritional issues that are obvious to mainstream medicine (and for which our very mainstream pediatrician has referred us to specialists). One of the things I am grateful to Kev for is a statement he wrote in 2005 (and I’m paraphrasing) that if an issue is real then it should be detectable by a reputable mainstream lab. We have followed this approach, and mainstream testing has identified – among other things - serious nutritional issues related in part to absorption deficiencies in my daughter. We have worked to correct these issues, using diet and supplements (under the care of a PhD in nutrition) in dosages that take into account RDA limits, and have been successful in controlling and even eliminating some medical issues. We have also seen increased development in our daughter during this time, but I cannot guarantee that the bio-med treatments are the sole source of this improvement.
We do not chelate our child, and to be honest, the process scares me. For the record, my daughter has some potential heavy metal issues (not mercury) that showed up on a mainstream test (discovered by accident – we were testing for essential minerals and ticked the toxic panel as an afterthought). Our approach has been to monitor this and try to naturally rebuild the Bear's detox system rather than use chelation. But I do not oppose others using chelation as long as they have clearly dealt with other bio-medical issues first, have tested their child and found the presence of heavy metals, and are careful to conduct chelation under qualified and experienced supervision and with regular testing/monitoring performed by reputable labs to ensure that no harm is being done.
I am also on the interventionist side in terms of education. My daughter is in an IBI program five mornings per week. As I posted previously, “The goal of her program is not to get her to ‘pass as NT’ - before she was enrolled, the program head very clearly told us that the IBI program would not make her ‘normal’. Instead, it is to teach her skills that will enable her to better and more independently function in the world. Absolutely no effort is expended to get her to act ‘normal’. Instead, she is developing her gross and fine motor skills (e.g. learning how to walk up and down stairs or turn a doorknob), looking at books, learning to communicate through PECS, etc.”
Further, we don’t use IBI to stop her from stimming, since ” we view her stims as a method of communication, self-orientation, and comfort. Her IBI program feels the same way. Instead of trying to make my daughter look NT, they’re trying to teach her the skills that will help her as a human being, regardless of her neuro-orientation.” And as part of the program, ”IBI taught my daughter the first two stages of PECS, as well as helping her to understand the purpose and value of gesturing to communicate. When she gestures, they follow her lead, and they believe that it is important to encourage this. She can now take someone by the hand and lead them a considerable distance to the object of her desire and then communicate to them what she wants, despite being unable to form a single word. As she learns to discriminate between the PECS cards her communications abilities will improve further. Note that none of this is making her any less autistic, but all of it is enabling her to better interact with those around her, make her needs known, and get them met – including her need to socialize and have fun.”
We also have access to a speech and language program, that we’re currently using to teach the Bear stage three of PECS (discrimination), which she is picking up very quickly. Since she cannot talk, we figure that we need to find her another way to communicate, and through both PECS and gesturing she can usually make herself quite well understood. We also had access to OT services, but this access is petering out now that she is nearly three years old. We do have a couple of follow-up sessions due to the generosity of our OT provider, but would welcome more OT support if we can access it.
As for some of the public issues regarding autism, e.g. demonizing autism, the Autism Speaks video or the murder of Katie McCarron, again I am clearly not neutral. My daughter has every right to the same degree of respect and security of person as anyone else, and I oppose any effort to demean, belittle, disrespect, or threaten her because she is autistic. While I do not condone the use of tragedy to falsely label others or to support ideological goals (sorry, but supporting an interventionist or even cure approach to autism does not equate with condoning or justifying murder, and it is insulting to attempt to make or insinuate this link), I will stand with those who respect my daughter and support her rights, and speak out against those who do not.
So, overall we are firmly on the interventionist side of the autism debate, although moderate in application, and - we believe - respectful of our daughter. We are not intervening to ‘cure’ autism, but to treat and hopefully ameliorate the issues that some believe are co-morbidities and some (including us) suspect are the drivers of autistic disabilities. We firmly believe that if we can achieve this our daughter will still be autistic in thought, part of the BAP, and we have absolutely no issue with this – again, our issue is with autistic disabilities, not autistic thought. If our daughter retains her ‘severe autism’ diagnosis then we will accept that too. Our joy is not the Joy of Autism, but the Joy of the Bear, and she will continue to be our joy regardless of her outcome.
What I find interesting is that moderation (not necessarily my moderation, but moderation in general) seems to be threatening to some. My guess is that moderation is probably a greater threat to the ideological poles than their polar opponents. There is a history of extremes targeting moderates to turn situations into a clear black vs. white, ‘us’ vs. ’them’ issues, eliminating any room for diversity of viewpoints or compromise. It is easy to caricature or ridicule an extremist opponent (e.g. ‘all autism = mercury’ is downright silly), but it is harder to ridicule a moderate interventionist approach backed by replicable medical tests and following a moderate educational approach based on what many would consider common sense. In this, moderates could therefore be considered the greater threat.
I’m not saying that my approach is necessarily correct, or that others should follow it. What I am saying though is that it is a reasonable attempt, backed by mainstream derived evidence, to follow a common sense path to help my daughter grow into the person that she is in the process of becoming, and we have a right to follow it. I’m not saying that everyone has to agree, but I have the right to hold my opinions, they are no threat to anyone else, and they do not make people like me ‘part of the problem’.
I’m not neutral. I’m on the side of the Bear.
Tuesday, May 30, 2006
Contrasting Two Presentations of Autism
My wife and I and my outlaws (they’re great, but this is still my handle for them – my only ‘in-laws’ joke) took the Bear to Black Creek Pioneer Village on Sunday for an outing. We all had a good time, and the Bear, true to form, wandered everywhere to see everything, but didn’t seem to be focusing much on anything in particular. We stopped in a yard outside one of the houses and hung out under the shade of the trees, and the outlaws played with the Bear.
“She might not look like she’s paying attention, but she’s taking everything in.” said my father-in-law. “She understands a lot more than we know.” My jaw dropped. Then I clued in, and that reminded me to mention to my mother-in-law that we now had a copy of the Time magazine with the cover story on Autism (May 15th, 2006 issue, written by Claudia Wallis). “Oh, we forgot to bring it”, she said, but it didn’t matter. We had all missed that edition on the newstand. Relatives in Michigan had a copy and sent it to my outlaws for them and then us to read. “Did you read it?” I asked. Both answered yes and that they had found it very interesting, and helpful in understanding autism. They’ve always been good with the Bear, but their comments on Sunday showed that they ‘got it’, at least as much as one could from the Time write-up. They knew that what they could see was not indicative of what the Bear was thinking or understanding or capable of. It was one thing for us to say it, but now it was in print too, so it must be true.
The outlaws then proved that they didn’t ‘get’ everything when they asked about the Bear’s school. They forgot that she goes to IBI five mornings a week, and were still under the impression that the government must be paying for her IBI since the government had ‘approved’ her for funding. We obviously must be doing something wrong (because there surely couldn’t be a waiting list for something so important?). Why didn’t we just demand that they pay? But that’s another story.
---
I found the Time write-up to be surprisingly good. Among other points, it talked about previously unrecognized (by non-ASD people) capabilities of those with ASD, autistic brain structure (raising the surprisingly sophisticated question of how much is the cause vs. the result of autism), autism subtypes, the view that ASD may be a combination of genetic vulnerabilities and environmental triggers, and the potential of the immune system to play a role. It also included an article on ABA and Floortime/DIR (developmental, individual-difference, relationship based) teaching, showing that teaching is not just possible, but very achievable. The write-up also mentioned some of the negatives, but did not dwell on them to the exclusion of the positives or of progress and hope. It was surprisingly balanced in its overall approach.
My favorite part was the following bullet-point under “Among the surprises:”
”Many classic symptoms of autism – spinning, head banging, endlessly repeating phrases – appear to be coping mechanisms rather than hard-wired behavior. Other classic symptoms – a lack of emotion, an inability to love – can now largely be dismissed as artifacts of impaired communication. The same may be true of the supposedly high incidence of mental retardation.”
This one quote highlights the most important take-away from the Time articles that I want everyone who meets the Bear to know. If they remember nothing else, I want them to remember this. For this alone I am grateful to Time and the author.
Contrast this with “Autism Every Day”.
I was quite taken aback by the video itself. I feel sympathy for the families involved, but I also have some major issues. To me this was a ‘train wreck’ video, and while autism is obviously difficult, I don’t feel that families touched by autism are well served by disaster movies. A more honest video would have showed the difficulties, but also the good times, and that it is possible to cope, learn, and improve the quality of life of our children, and for that matter for ourselves as parents, siblings, etc. The video asked for understanding, but it appeared to me to be understanding for the parents in having to deal with their children, rather than understanding for both children and parents.
I quite like the idea of a video to explain our lives to others. But I'd prefer that it didn't make my child (by association) look like a ‘nightmare’ inflicted on us (and potentially on others when they come in contact with her). As a parent, autism is hard and painful at times to deal with, but there is also a joy that we can feel from our children, and one that our children can feel, even if we cannot always see it - and I think that much of the time I can see it, written on my daughter’s face. I don't want people to shy away from the Bear, to be afraid of the disruption that they fear she may cause, or to pity her, but rather, I want them to understand her and accept her.
Asking for acceptance does not mean that I'm not going to work like hell to fix her SI, immune, GI, etc. issues. I have no problem with autistic thought per se, but with autistic 'issues' - it is these that I'm working to help her overcome, and I believe there is a link between her medical symptoms and these ‘issues’. Asking for acceptance also does not mean that I won’t try through IBI or other teaching methods to teach or enable her to learn the skills she needs to make her way in the world. Instead, acceptance means recognizing her as a human being worthy of the same respect and rights as anyone else. Implying that she is a nightmare to deal with is not only untrue, but does nothing to further this goal.
I'm also angry at some of the comments of the parents. I believe that my daughter is capable of understanding far more than I can see (and I often get confirmation of this, at the most surprising times). I would never say in front of my child (or behind her back, for that matter) that I was contemplating driving off a bridge with her in the car, or that she will never get married, or that hopefully medical science will find a cure before her sister has children, the implication being so that the sister does not have to deal with a child like her. What about medical science ameliorating her autistic daughter's difficulties, or enabling her to lead a rich life through learning and inclusion too? More than one of the parents sounded like they viewed their kids as 'write-offs', and did so right in front of them. That made me cringe.
A major point left out of both the Time write-up and the video is that learning and assistance for parents is definitely needed and in short supply. This is needed so that parents can better understand autism (not that I do yet, either), how to help their children, and what their children are - and can become capable of - achieving. The lack of understanding of the powers that be (especially including front line and even some 'expert' medical people, but also government and some in the various support services) is short-changing everyone involved. Both missed this point.
The words and actions of the parents may be related in part to this lack of knowledge. Given that my daughter is not yet three, I'm also very conscious of 'there but for the grace of God go I', so I don't want to judge too harshly, or publicly condemn them (although I guess I just did). My daughter is 'severe' (or was last summer), but I have no idea what she will be like when she is five, 10, 15, 20, etc. I think she is becoming significantly more capable and will surprise us all. But even if she doesn't lose the 'severe' diagnosis, I hope that I will never look at her as I perceived that the parents in the video looked at their children. To me, that would be a tragedy.
Overall, the Time article is one that I wish that everyone coming in contact with the Bear could read. I hope that it helps them gain a better understanding of what autism is, accept the Bear’s strengths and challenges for what they are, and see her as filled with potential.
In contrast, I hope that no one who meets the Bear has seen ‘Autism Every Day’. I hope that any who have can recognize that the video is not a true reflection of life with the Bear, and I definitely do not want them to judge her based on what they’ve seen. Getting people to understand and accept the Bear will be hard enough, without her having to deal with the ‘own-goal’ called Autism Every Day. The Bear is not a nightmare to be endured. She is my daughter, she is a great kid, recognized as such by all who meet her, and she deserves better than the video. The Time article is a good place to start.
---
On a bright note, the Bear ate with her hands for the first time today. Previously, all food came from a spoon or a sippy-cup. We recently got her to allow us to put banana from our hands into her mouth. But today, for the first time, she ate strawberries with her own hands. Small steps, but a big leap in independence. Go Bear!
“She might not look like she’s paying attention, but she’s taking everything in.” said my father-in-law. “She understands a lot more than we know.” My jaw dropped. Then I clued in, and that reminded me to mention to my mother-in-law that we now had a copy of the Time magazine with the cover story on Autism (May 15th, 2006 issue, written by Claudia Wallis). “Oh, we forgot to bring it”, she said, but it didn’t matter. We had all missed that edition on the newstand. Relatives in Michigan had a copy and sent it to my outlaws for them and then us to read. “Did you read it?” I asked. Both answered yes and that they had found it very interesting, and helpful in understanding autism. They’ve always been good with the Bear, but their comments on Sunday showed that they ‘got it’, at least as much as one could from the Time write-up. They knew that what they could see was not indicative of what the Bear was thinking or understanding or capable of. It was one thing for us to say it, but now it was in print too, so it must be true.
The outlaws then proved that they didn’t ‘get’ everything when they asked about the Bear’s school. They forgot that she goes to IBI five mornings a week, and were still under the impression that the government must be paying for her IBI since the government had ‘approved’ her for funding. We obviously must be doing something wrong (because there surely couldn’t be a waiting list for something so important?). Why didn’t we just demand that they pay? But that’s another story.
---
I found the Time write-up to be surprisingly good. Among other points, it talked about previously unrecognized (by non-ASD people) capabilities of those with ASD, autistic brain structure (raising the surprisingly sophisticated question of how much is the cause vs. the result of autism), autism subtypes, the view that ASD may be a combination of genetic vulnerabilities and environmental triggers, and the potential of the immune system to play a role. It also included an article on ABA and Floortime/DIR (developmental, individual-difference, relationship based) teaching, showing that teaching is not just possible, but very achievable. The write-up also mentioned some of the negatives, but did not dwell on them to the exclusion of the positives or of progress and hope. It was surprisingly balanced in its overall approach.
My favorite part was the following bullet-point under “Among the surprises:”
”Many classic symptoms of autism – spinning, head banging, endlessly repeating phrases – appear to be coping mechanisms rather than hard-wired behavior. Other classic symptoms – a lack of emotion, an inability to love – can now largely be dismissed as artifacts of impaired communication. The same may be true of the supposedly high incidence of mental retardation.”
This one quote highlights the most important take-away from the Time articles that I want everyone who meets the Bear to know. If they remember nothing else, I want them to remember this. For this alone I am grateful to Time and the author.
Contrast this with “Autism Every Day”.
I was quite taken aback by the video itself. I feel sympathy for the families involved, but I also have some major issues. To me this was a ‘train wreck’ video, and while autism is obviously difficult, I don’t feel that families touched by autism are well served by disaster movies. A more honest video would have showed the difficulties, but also the good times, and that it is possible to cope, learn, and improve the quality of life of our children, and for that matter for ourselves as parents, siblings, etc. The video asked for understanding, but it appeared to me to be understanding for the parents in having to deal with their children, rather than understanding for both children and parents.
I quite like the idea of a video to explain our lives to others. But I'd prefer that it didn't make my child (by association) look like a ‘nightmare’ inflicted on us (and potentially on others when they come in contact with her). As a parent, autism is hard and painful at times to deal with, but there is also a joy that we can feel from our children, and one that our children can feel, even if we cannot always see it - and I think that much of the time I can see it, written on my daughter’s face. I don't want people to shy away from the Bear, to be afraid of the disruption that they fear she may cause, or to pity her, but rather, I want them to understand her and accept her.
Asking for acceptance does not mean that I'm not going to work like hell to fix her SI, immune, GI, etc. issues. I have no problem with autistic thought per se, but with autistic 'issues' - it is these that I'm working to help her overcome, and I believe there is a link between her medical symptoms and these ‘issues’. Asking for acceptance also does not mean that I won’t try through IBI or other teaching methods to teach or enable her to learn the skills she needs to make her way in the world. Instead, acceptance means recognizing her as a human being worthy of the same respect and rights as anyone else. Implying that she is a nightmare to deal with is not only untrue, but does nothing to further this goal.
I'm also angry at some of the comments of the parents. I believe that my daughter is capable of understanding far more than I can see (and I often get confirmation of this, at the most surprising times). I would never say in front of my child (or behind her back, for that matter) that I was contemplating driving off a bridge with her in the car, or that she will never get married, or that hopefully medical science will find a cure before her sister has children, the implication being so that the sister does not have to deal with a child like her. What about medical science ameliorating her autistic daughter's difficulties, or enabling her to lead a rich life through learning and inclusion too? More than one of the parents sounded like they viewed their kids as 'write-offs', and did so right in front of them. That made me cringe.
A major point left out of both the Time write-up and the video is that learning and assistance for parents is definitely needed and in short supply. This is needed so that parents can better understand autism (not that I do yet, either), how to help their children, and what their children are - and can become capable of - achieving. The lack of understanding of the powers that be (especially including front line and even some 'expert' medical people, but also government and some in the various support services) is short-changing everyone involved. Both missed this point.
The words and actions of the parents may be related in part to this lack of knowledge. Given that my daughter is not yet three, I'm also very conscious of 'there but for the grace of God go I', so I don't want to judge too harshly, or publicly condemn them (although I guess I just did). My daughter is 'severe' (or was last summer), but I have no idea what she will be like when she is five, 10, 15, 20, etc. I think she is becoming significantly more capable and will surprise us all. But even if she doesn't lose the 'severe' diagnosis, I hope that I will never look at her as I perceived that the parents in the video looked at their children. To me, that would be a tragedy.
Overall, the Time article is one that I wish that everyone coming in contact with the Bear could read. I hope that it helps them gain a better understanding of what autism is, accept the Bear’s strengths and challenges for what they are, and see her as filled with potential.
In contrast, I hope that no one who meets the Bear has seen ‘Autism Every Day’. I hope that any who have can recognize that the video is not a true reflection of life with the Bear, and I definitely do not want them to judge her based on what they’ve seen. Getting people to understand and accept the Bear will be hard enough, without her having to deal with the ‘own-goal’ called Autism Every Day. The Bear is not a nightmare to be endured. She is my daughter, she is a great kid, recognized as such by all who meet her, and she deserves better than the video. The Time article is a good place to start.
---
On a bright note, the Bear ate with her hands for the first time today. Previously, all food came from a spoon or a sippy-cup. We recently got her to allow us to put banana from our hands into her mouth. But today, for the first time, she ate strawberries with her own hands. Small steps, but a big leap in independence. Go Bear!
Thursday, May 25, 2006
The Murder of Katherine McCarron
Like many in the community of people linked by autism, I am deeply saddened and troubled by the murder of Katherine ‘Katie’ McCarron. Some have suggested as a mitigating factor the view that autism can be difficult to deal with (using the “Autism Every Day” video as an example of the difficulties of being an autistic parent), some have blamed the video for its one-sided portrayal of autism as a 'nightmare' to be endured, some have blamed bio-meds, etc. Personally, I’m just going to stick to the basics.
Children are not objects, possessions, or property. They are fellow human beings, temporarily entrusted to us for care, nurturing, protection, support, and growth, and especially for love.
Their life was ours to give, but it is not ours to take away. No parent has the right to murder their child. Period.
I’m not going to say that this murder was worse because Katie was autistic. The murder of any child, especially by a parent, is equally horrific. And to be clear, we do not yet even know the mother’s motives, but are only surmising that autism may be part of this, because Katie was autistic and her parents may have been following an 'amelioration' approach. But what does makes this case worse is that some – possibly including the mother - may believe that the fact that Katie was autistic somehow partially justifies the act, lessens the severity of the crime, or is somehow a mitigating or explanatory factor.
There are no gradations of humanity, no ‘part’ humans, no ‘people, but’. Autistics may face communications and other issues, but these issues in no way render someone any less human and deserving of life, security, and respect. Whatever autism ‘is’ to anyone – a diversity to be celebrated, something to be cured, something to be understood, something to be lived with, something to ‘be’ – it is not is an excuse or justification for murder.
Children are not objects, possessions, or property. They are fellow human beings, temporarily entrusted to us for care, nurturing, protection, support, and growth, and especially for love.
Their life was ours to give, but it is not ours to take away. No parent has the right to murder their child. Period.
I’m not going to say that this murder was worse because Katie was autistic. The murder of any child, especially by a parent, is equally horrific. And to be clear, we do not yet even know the mother’s motives, but are only surmising that autism may be part of this, because Katie was autistic and her parents may have been following an 'amelioration' approach. But what does makes this case worse is that some – possibly including the mother - may believe that the fact that Katie was autistic somehow partially justifies the act, lessens the severity of the crime, or is somehow a mitigating or explanatory factor.
There are no gradations of humanity, no ‘part’ humans, no ‘people, but’. Autistics may face communications and other issues, but these issues in no way render someone any less human and deserving of life, security, and respect. Whatever autism ‘is’ to anyone – a diversity to be celebrated, something to be cured, something to be understood, something to be lived with, something to ‘be’ – it is not is an excuse or justification for murder.
Saturday, May 13, 2006
Some Thoughts Regarding IBI
ABA/IBI has been subject to some negative posts recently, most notably by Prometheus and Autism Diva. I would suggest that their criticism is both simplistic and off the mark in at least some cases, especially in my daughter's case.
In Prometheus’s case, he starts from the perspective that the goal of ABA is to rid the child of ‘autistic behaviors’:
"So, the ABA therapist uses a slight modification of classic conditioning to get an autistic person (usually a child) to either stop doing behaviors that are considered "autistic" or get them to do behaviors that are considered "normal". If ABA manages to get an autistic person to make eye contact, respond to their name or stop flapping, their scores on the various autism rating scales will move toward less autistic (i.e. "improve").
The big question is this - does ABA actually "treat" autism - or just treat the "symptoms"? Does reducing the behaviors unique to autism equate to reducing autism? Or is it just putting on a different coat of paint?”
At least in the case of the Bear’s IBI program, the premise above is incorrect. The goal of her program is not to get her to ‘pass as NT’ - before she was enrolled, the program head very clearly told us that the IBI program would not make her ‘normal’. Instead, it is to teach her skills that will enable her to better and more independently function in the world. Absolutely no effort is expended to get her to act ‘normal’. Instead, she is developing her gross and fine motor skills (e.g. learning how to walk up and down stairs or turn a doorknob), looking at books, learning to communicate through PECS, etc. When she first started ‘school’ at 1 yr 11 months a great deal of effort was expended to help her learn to walk (which she was not doing at that point). Rather than viewing this as ridding her of autistic behavior, we interpreted it as helping her to gain mobility to explore her world. Given her enthusiasm for walking (which she clearly enjoys – she’ll lead the way over quite impressive distances), I’d guess that she would agree.
I know more than a few parents who have not been able to afford private IBI and are stuck on the government-funded waiting list (more below). It might be easy to say that we are unique in not looking to IBI to ‘recover’ our child, but the parents I know also do not have this expectation. Like us, they want their children to learn and develop. Lovaas may have expectations of ‘recovering’ autistic children, but the parents I talk to have more modest goals (which is not to say they would or would not support ‘recovery’ or a ‘cure’, but rather that they don’t see ABA/IBI as delivering this possibility). This is anecdotal, but I’ve noticed that ‘anecdote’ is a label that generally gets attached to only those observations with which one disagrees.
Prometheus again:
"So, what exactly are parents accomplishing by "treating" their children with ABA? Undoubtedly, some of the behavioral manifestations of autism that they (the parents, not the child) find most bothersome may be eliminated. This is good for the parents, I suppose, but is there a corresponding benefit to the child?
Not sure about that.
Again, the child may be considered to benefit because the behaviors that mark them as "different" are reduced. However, since these behaviors don't appear to be bothering the child, the "benefits" would seem to be reaped by the other members of the community who are not "disturbed". And, since many autistic children (and adults) report that their "autistic" behaviors (e.g. flapping, avoiding eye contact, etc.) are comforting, the community's "benefit" is realized at a cost to the child.
Bummer."
Again, Prometheus is both assuming and evaluating against a goal that is not universally held. No effort is made to stop the Bear from stimming. We’re not looking for IBI to do this, since we view her stims as a method of communication, self-orientation, and comfort. Her IBI program feels the same way. Instead of trying to make my daughter look NT, they’re trying to teach her the skills that will help her as a human being, regardless of her neuro-orientation. In our views regarding stimming I freely admit that we may be a minority among parents of autistics.
Prometheus:
"But, at least ABA improves something about the autistic person's ability to interact with the outside world - right?
Not sure about that.
Let's say I train my goldfish to maintain eye contact with me by only feeding him when he is looking right at me. Has this made him more able to "relate" to people? I doubt it. The same thing applies to ABA and autism. It may alter the behaviors that other people find objectionable, but it is unlikely to change anything fundamental about the autistic person, any more than training me to drool when I hear a bell ring will turn me into a dog.
Woof. Woof, woof!"
IBI taught my daughter the first two stages of PECS, as well as helping her to understand the purpose and value of gesturing to communicate. When she gestures, they follow her lead, and they believe that it is important to encourage this. She can now take someone by the hand and lead them a considerable distance to the object of her desire and then communicate to them what she wants, despite being unable to form a single word. As she learns to discriminate between the PECS cards her communications abilities will improve further. Note that none of this is making her any less autistic, but all of it is enabling her to better interact with those around her, make her needs known, and get them met – including her need to socialize and have fun.
Prometheus wrote:
"I suppose that some people will argue that ABA "therapy" (I prefer to call it "training" - that seems more honest) allows autistic people to "get beyond" the obstacles that keep them "locked in" to their autistic world. That's an interesting idea, but completely without any data to support it."
See above re: walking, gross and fine motor skills, PECS. Yes, I’m sure that the Bear would have learned to walk without IBI (and we were doing a lot with her outside of IBI too). But the issue is one of timing, in that the sooner she could walk, the sooner she could further explore and learn from her world. I go by the assumption that learning is exponential, not incremental. The same applies to gross and fine motor skills. There are some autistics who state that they have an inability to perform tasks such as tieing shoe laces, making toast, or blowing their nose (links available on request). IBI has been able to teach my daughter tasks that she has not independently mastered, and unless someone can guarantee that she will learn these types of skills independently (and the fact that others have not learned them gives me some pause) then I see nothing wrong with devoting some time to attempting to teach them to her. Obviously we recognize that she may not be ready yet to learn some tasks, but there are plenty of tasks that she is ready and currently learning to complete. As for non-anecdotal support data, Regan gave a couple of links on Prometheus’s blog that may demonstrate ABA’s effectiveness. Jonathan Semetko estimated that there are 500-1000 peer reviewed and published studies in autism/ABA, so I’m sure that he could come up with a few more links if asked.
Prometheus wrote:
”ABA is no different - at its core - from all of the other behavioral modification techniques used on humans and other animals. The desired behaviors are rewarded and the undesired behaviors are punished. Now, I'm sure that ABA's supporters will argue that punishment ("negative reinforcement") is no longer a part of ABA. However, the continuous repetition of the command or "physical prompting" (especially to people who are averse to physical contact) has to be considered a punishment.”
First, no negative reinforcement or aversives are used on my daughter. Period. Second, she does not get any food reward. The only exception to this is her ‘milk’, which she requests with a PECS card as little or as often as she wants, with no limit. Neither her ‘milk’ nor her snack is used as a reinforcer. She does not do endless repetitions of anything - she is 2 years and 10 months old, so attempting to force a lot of repetition would be pointless. Instead, she does a few repetitions of tasks that are designed to be fun, stretching her capabilities but also allowing her to succeed with effort. Much of her ‘reward’ is the thrill of accomplishment, which I know is a strong motivator for her. (At home I often see her try something over and over, not as perseveration, but to learn the task - e.g. navigating a step up and down – and she is clearly and visibly quite proud of herself when she masters it). If she becomes bored with a task there is no point in going on with it, at which point they transition into something else, but normally she does not do the task long enough for boredom to set in. And instead of being averse to physical contact, my daughter is very physical and will initiate and sustain physical contact. If she doesn’t like contact she will very clearly communicate it.
Camille’s post was also to a large degree about aversives, as well as her perception of the personality failings of Ivar Lovaas.
Camille writes: "Of course, not all ABA is like what is described in the 1965 (my emphasis) article about Lovaas and his lab. Some is worse. Some is less overtly abusive. Some teaching of autistic children and adults might just be teaching and called ABA wrongly. Parents who have tried it with their kids are not evil. It's frequently offered as the only thing that can possibly make an autistic kid pass for normal, and it's hard to pass by an opportunity to make your autistic child normal...for most parents... given the climate of shock and despair that seems to surround an official diagnosis of just about any serious disability in a child."
My understanding of ABA is that it involves the breaking down of more complex behaviors into smaller incremental steps and then teaching these steps through repetition until they are mastered, with reinforcers to reward compliance and/or success. Obviously there’s more to it than this, but the ‘more’ does not include physically abusing the child. While it is fair game to point out historical issues with ABA, to try to link historical use of aversives to current practice may be just a touch misleading. As well, implying that the only goal of ABA is to make a child ‘normal’ is misleading in many cases. The goals of the programs that I have come across have always been to teach the child skills, not to allow them to ‘pass for normal’. Perhaps I travel in different circles than most others, but I’ve yet to come across an ABA program or an ABA parent who has ‘normal’ as an ABA goal. Skills and accomplishments? Yes. Normal? No
As for Ivor Lovaas, I’d suggest that criticism of him, if accurate, does not necessarily invalidate his methodology, any more than any potential failings of Prometheus invalidate the theory of evolution that he teaches or Camille’s potential lapses invalidate the concept of neurodiversity. Ad hominems can be used by both sides, but some only believe they count as such if they are the victim.
Another criticism leveled at ABA is the cost of the program and the requirement for 40 hours per week, with the comment about how that looks to be a convenient workweek for the ABA therapist. In my daughter’s case, she goes to school five mornings per week, or fifteen hours in total. No one has suggested that she spend more time than this at her age. The 40 hour work week comment doesn’t make a lot of sense given that as well as the therapy, a considerable amount of time is supposed to be spent capturing and documenting the daily results and planning for the upcoming sessions - implying that the therapist really wants to work a 45 hour week? Or perhaps this is just a cheap shot.
As for the cost, I’m paying for my daughter’s program out of pocket, although with a minimal amount of support from my employer’s health plan (less than 10%). I would suggest that the government should be paying for the program. We’re on the waiting list - after a full screening assessment - suggesting that the government agrees with us. But because of a recent ruling that no child can be ‘kicked out’ of the funding program at six years old (which I also agree with), combined with the provincial government’s unwillingness to increase funding, the result is that we will be paying for IBI for a while yet (this is being challenged by others in court).
Do I begrudge the amount that I have to pay? No. My daughter has 1 to 1 instruction. Given that her therapists are not independently wealthy and doing this as a hobby, I think it is reasonable that they get to earn a decent living - to eat, pay for shelter and to have access to the rewards that many of us expect to result from employment - and to be content enough in their job that they’re not constantly looking for something better paying to survive. I also expect them to be competently supervised, for the program to have a knowledgeable head, and for the school to be able to both pay their rent and heat (and cool) the building in which the instruction is given. So do I begrudge paying enough to ensure that this happens, so that the Bear learns in a safe and secure environment? No.
There is a case to be made that ABA is not the best teaching method for all autistic children. It is definitely not the only method. We are open to other options, and the Bear has lots of time for implicit learning. Even within the IBI program, time is allotted to ‘follow her lead’. But we also feel that there are some skills that she needs to learn, including self-care skills, and as long as she is capable of learning them then we would like to see this happen. If someone can point out a better teaching method then we will definitely listen. Our interest in IBI is practical, not ideological. But until then, we intend to devote some of the Bear’s time to IBI, which we can see has clearly benefited her. We don’t expect it to make her non-autistic. But we do expect her to learn and to be able to demonstrate her learning outside of the classroom.
So far she has shown that this is working, so we will continue with the program. When Prometheus asks, who gains from ABA, our answer is that our daughter does. Is all of her development related to IBI? No. Some is the result of her own development timetable, and some is the result of our interventions. But IBI has definitely helped, and we have concrete examples (e.g. her PECS proficiency) that she could not have picked up elsewhere. Attacking ABA over its ability to allow autistics to ‘recover’ may be easy, but it is also an incomplete analysis that misses the point. For many of its practitioners who operate outside of autism’s ideological wars, ABA is intended to teach. And measured by this yardstick I would suggest that for some children – including mine - it is successful when used for this purpose.
In Prometheus’s case, he starts from the perspective that the goal of ABA is to rid the child of ‘autistic behaviors’:
"So, the ABA therapist uses a slight modification of classic conditioning to get an autistic person (usually a child) to either stop doing behaviors that are considered "autistic" or get them to do behaviors that are considered "normal". If ABA manages to get an autistic person to make eye contact, respond to their name or stop flapping, their scores on the various autism rating scales will move toward less autistic (i.e. "improve").
The big question is this - does ABA actually "treat" autism - or just treat the "symptoms"? Does reducing the behaviors unique to autism equate to reducing autism? Or is it just putting on a different coat of paint?”
At least in the case of the Bear’s IBI program, the premise above is incorrect. The goal of her program is not to get her to ‘pass as NT’ - before she was enrolled, the program head very clearly told us that the IBI program would not make her ‘normal’. Instead, it is to teach her skills that will enable her to better and more independently function in the world. Absolutely no effort is expended to get her to act ‘normal’. Instead, she is developing her gross and fine motor skills (e.g. learning how to walk up and down stairs or turn a doorknob), looking at books, learning to communicate through PECS, etc. When she first started ‘school’ at 1 yr 11 months a great deal of effort was expended to help her learn to walk (which she was not doing at that point). Rather than viewing this as ridding her of autistic behavior, we interpreted it as helping her to gain mobility to explore her world. Given her enthusiasm for walking (which she clearly enjoys – she’ll lead the way over quite impressive distances), I’d guess that she would agree.
I know more than a few parents who have not been able to afford private IBI and are stuck on the government-funded waiting list (more below). It might be easy to say that we are unique in not looking to IBI to ‘recover’ our child, but the parents I know also do not have this expectation. Like us, they want their children to learn and develop. Lovaas may have expectations of ‘recovering’ autistic children, but the parents I talk to have more modest goals (which is not to say they would or would not support ‘recovery’ or a ‘cure’, but rather that they don’t see ABA/IBI as delivering this possibility). This is anecdotal, but I’ve noticed that ‘anecdote’ is a label that generally gets attached to only those observations with which one disagrees.
Prometheus again:
"So, what exactly are parents accomplishing by "treating" their children with ABA? Undoubtedly, some of the behavioral manifestations of autism that they (the parents, not the child) find most bothersome may be eliminated. This is good for the parents, I suppose, but is there a corresponding benefit to the child?
Not sure about that.
Again, the child may be considered to benefit because the behaviors that mark them as "different" are reduced. However, since these behaviors don't appear to be bothering the child, the "benefits" would seem to be reaped by the other members of the community who are not "disturbed". And, since many autistic children (and adults) report that their "autistic" behaviors (e.g. flapping, avoiding eye contact, etc.) are comforting, the community's "benefit" is realized at a cost to the child.
Bummer."
Again, Prometheus is both assuming and evaluating against a goal that is not universally held. No effort is made to stop the Bear from stimming. We’re not looking for IBI to do this, since we view her stims as a method of communication, self-orientation, and comfort. Her IBI program feels the same way. Instead of trying to make my daughter look NT, they’re trying to teach her the skills that will help her as a human being, regardless of her neuro-orientation. In our views regarding stimming I freely admit that we may be a minority among parents of autistics.
Prometheus:
"But, at least ABA improves something about the autistic person's ability to interact with the outside world - right?
Not sure about that.
Let's say I train my goldfish to maintain eye contact with me by only feeding him when he is looking right at me. Has this made him more able to "relate" to people? I doubt it. The same thing applies to ABA and autism. It may alter the behaviors that other people find objectionable, but it is unlikely to change anything fundamental about the autistic person, any more than training me to drool when I hear a bell ring will turn me into a dog.
Woof. Woof, woof!"
IBI taught my daughter the first two stages of PECS, as well as helping her to understand the purpose and value of gesturing to communicate. When she gestures, they follow her lead, and they believe that it is important to encourage this. She can now take someone by the hand and lead them a considerable distance to the object of her desire and then communicate to them what she wants, despite being unable to form a single word. As she learns to discriminate between the PECS cards her communications abilities will improve further. Note that none of this is making her any less autistic, but all of it is enabling her to better interact with those around her, make her needs known, and get them met – including her need to socialize and have fun.
Prometheus wrote:
"I suppose that some people will argue that ABA "therapy" (I prefer to call it "training" - that seems more honest) allows autistic people to "get beyond" the obstacles that keep them "locked in" to their autistic world. That's an interesting idea, but completely without any data to support it."
See above re: walking, gross and fine motor skills, PECS. Yes, I’m sure that the Bear would have learned to walk without IBI (and we were doing a lot with her outside of IBI too). But the issue is one of timing, in that the sooner she could walk, the sooner she could further explore and learn from her world. I go by the assumption that learning is exponential, not incremental. The same applies to gross and fine motor skills. There are some autistics who state that they have an inability to perform tasks such as tieing shoe laces, making toast, or blowing their nose (links available on request). IBI has been able to teach my daughter tasks that she has not independently mastered, and unless someone can guarantee that she will learn these types of skills independently (and the fact that others have not learned them gives me some pause) then I see nothing wrong with devoting some time to attempting to teach them to her. Obviously we recognize that she may not be ready yet to learn some tasks, but there are plenty of tasks that she is ready and currently learning to complete. As for non-anecdotal support data, Regan gave a couple of links on Prometheus’s blog that may demonstrate ABA’s effectiveness. Jonathan Semetko estimated that there are 500-1000 peer reviewed and published studies in autism/ABA, so I’m sure that he could come up with a few more links if asked.
Prometheus wrote:
”ABA is no different - at its core - from all of the other behavioral modification techniques used on humans and other animals. The desired behaviors are rewarded and the undesired behaviors are punished. Now, I'm sure that ABA's supporters will argue that punishment ("negative reinforcement") is no longer a part of ABA. However, the continuous repetition of the command or "physical prompting" (especially to people who are averse to physical contact) has to be considered a punishment.”
First, no negative reinforcement or aversives are used on my daughter. Period. Second, she does not get any food reward. The only exception to this is her ‘milk’, which she requests with a PECS card as little or as often as she wants, with no limit. Neither her ‘milk’ nor her snack is used as a reinforcer. She does not do endless repetitions of anything - she is 2 years and 10 months old, so attempting to force a lot of repetition would be pointless. Instead, she does a few repetitions of tasks that are designed to be fun, stretching her capabilities but also allowing her to succeed with effort. Much of her ‘reward’ is the thrill of accomplishment, which I know is a strong motivator for her. (At home I often see her try something over and over, not as perseveration, but to learn the task - e.g. navigating a step up and down – and she is clearly and visibly quite proud of herself when she masters it). If she becomes bored with a task there is no point in going on with it, at which point they transition into something else, but normally she does not do the task long enough for boredom to set in. And instead of being averse to physical contact, my daughter is very physical and will initiate and sustain physical contact. If she doesn’t like contact she will very clearly communicate it.
Camille’s post was also to a large degree about aversives, as well as her perception of the personality failings of Ivar Lovaas.
Camille writes: "Of course, not all ABA is like what is described in the 1965 (my emphasis) article about Lovaas and his lab. Some is worse. Some is less overtly abusive. Some teaching of autistic children and adults might just be teaching and called ABA wrongly. Parents who have tried it with their kids are not evil. It's frequently offered as the only thing that can possibly make an autistic kid pass for normal, and it's hard to pass by an opportunity to make your autistic child normal...for most parents... given the climate of shock and despair that seems to surround an official diagnosis of just about any serious disability in a child."
My understanding of ABA is that it involves the breaking down of more complex behaviors into smaller incremental steps and then teaching these steps through repetition until they are mastered, with reinforcers to reward compliance and/or success. Obviously there’s more to it than this, but the ‘more’ does not include physically abusing the child. While it is fair game to point out historical issues with ABA, to try to link historical use of aversives to current practice may be just a touch misleading. As well, implying that the only goal of ABA is to make a child ‘normal’ is misleading in many cases. The goals of the programs that I have come across have always been to teach the child skills, not to allow them to ‘pass for normal’. Perhaps I travel in different circles than most others, but I’ve yet to come across an ABA program or an ABA parent who has ‘normal’ as an ABA goal. Skills and accomplishments? Yes. Normal? No
As for Ivor Lovaas, I’d suggest that criticism of him, if accurate, does not necessarily invalidate his methodology, any more than any potential failings of Prometheus invalidate the theory of evolution that he teaches or Camille’s potential lapses invalidate the concept of neurodiversity. Ad hominems can be used by both sides, but some only believe they count as such if they are the victim.
Another criticism leveled at ABA is the cost of the program and the requirement for 40 hours per week, with the comment about how that looks to be a convenient workweek for the ABA therapist. In my daughter’s case, she goes to school five mornings per week, or fifteen hours in total. No one has suggested that she spend more time than this at her age. The 40 hour work week comment doesn’t make a lot of sense given that as well as the therapy, a considerable amount of time is supposed to be spent capturing and documenting the daily results and planning for the upcoming sessions - implying that the therapist really wants to work a 45 hour week? Or perhaps this is just a cheap shot.
As for the cost, I’m paying for my daughter’s program out of pocket, although with a minimal amount of support from my employer’s health plan (less than 10%). I would suggest that the government should be paying for the program. We’re on the waiting list - after a full screening assessment - suggesting that the government agrees with us. But because of a recent ruling that no child can be ‘kicked out’ of the funding program at six years old (which I also agree with), combined with the provincial government’s unwillingness to increase funding, the result is that we will be paying for IBI for a while yet (this is being challenged by others in court).
Do I begrudge the amount that I have to pay? No. My daughter has 1 to 1 instruction. Given that her therapists are not independently wealthy and doing this as a hobby, I think it is reasonable that they get to earn a decent living - to eat, pay for shelter and to have access to the rewards that many of us expect to result from employment - and to be content enough in their job that they’re not constantly looking for something better paying to survive. I also expect them to be competently supervised, for the program to have a knowledgeable head, and for the school to be able to both pay their rent and heat (and cool) the building in which the instruction is given. So do I begrudge paying enough to ensure that this happens, so that the Bear learns in a safe and secure environment? No.
There is a case to be made that ABA is not the best teaching method for all autistic children. It is definitely not the only method. We are open to other options, and the Bear has lots of time for implicit learning. Even within the IBI program, time is allotted to ‘follow her lead’. But we also feel that there are some skills that she needs to learn, including self-care skills, and as long as she is capable of learning them then we would like to see this happen. If someone can point out a better teaching method then we will definitely listen. Our interest in IBI is practical, not ideological. But until then, we intend to devote some of the Bear’s time to IBI, which we can see has clearly benefited her. We don’t expect it to make her non-autistic. But we do expect her to learn and to be able to demonstrate her learning outside of the classroom.
So far she has shown that this is working, so we will continue with the program. When Prometheus asks, who gains from ABA, our answer is that our daughter does. Is all of her development related to IBI? No. Some is the result of her own development timetable, and some is the result of our interventions. But IBI has definitely helped, and we have concrete examples (e.g. her PECS proficiency) that she could not have picked up elsewhere. Attacking ABA over its ability to allow autistics to ‘recover’ may be easy, but it is also an incomplete analysis that misses the point. For many of its practitioners who operate outside of autism’s ideological wars, ABA is intended to teach. And measured by this yardstick I would suggest that for some children – including mine - it is successful when used for this purpose.
Friday, May 05, 2006
In Praise of PECS
From our (parental) perspective, one of the greatest challenges posed by the Bear’s autism is the resulting communications difficulties, specifically, our inability to always understand what she wants us to know and understand. The Bear (again, our daughter’s nom de net) is a very happy and good natured child (boy did we luck out – my parents want to know how this trait skipped a generation), and we have yet to experience a tantrum or meltdown of any sort (obviously we do get tears on occasion, but we’d be worried if we didn’t). I recognize that meltdowns can result from sensory overload, which doesn’t seem to be an issue at this point (touch wood – hand to head), but rumor has it that they can also result from the sheer frustration at the inability to make oneself understood. One of our goals as parents is to enable the Bear to communicate to the point that this level of frustration never arises.
Given that she does not speak (although she produces a host of sounds, some of them incredibly cute), and currently does not read (to the best of our knowledge, anyway) or write, this is a challenge. She is getting quite good at gesturing, and is quite capable of taking my hand and leading me to where she wants me to go, directing my hand to the object she seeks, or asking to be picked up, etc. But gesturing is not always an option, and something more is required.
We – or more accurately, our IBI providers - first introduced PECS, or Picture Exchange Communication System, to help fill the gap. PECS is quite literally what the name suggests. The student can exchange one or more pictures with another person to communicate a request, a thought, or anything that can reasonably be displayed or symbolized on a picture card. The IBI providers said that “we know that she has preferences, so we started using pictures as a way to get her to tell us what they are.” She caught on quickly, and we all decided to adopt this as a means of communications everywhere.
The PECS methodology has seven phases:
1 – teaching the student to initiate communications by exchanging a single picture for a highly desired item
2 – teaching the student to be a persistent communicator, to actively seek out their picture and travel to someone to make a request
3 – learning to discriminate between pictures and selecting the picture that represents the item they want
4 – learning the use of sentence structure to make a request in the form of “I want ____”
5 –responding to the question “What do you want?”
6 – learning to comment about things in their environment, both spontaneously and in response to questions
7 – vocabulary expansion, using attributes such as size, shape, and color in requests.
We’re not rigidly following the methodology, but are using it as a guide. The Bear is currently finishing phase 2. We’ve started PECS at home, with assistance from our SLP and a PECS specialist from the regional Special Needs organization, and have been very successful so far. We were quite surprised at how good the Bear already was at using it.
To assess her level, the SLP, PECS specialist and I sat her in front of a Teletubbies DVD (the Bear obviously gets her taste in videos from her mother), and then stopped the show. She looked around, and then gestured to me, and we started the video again. Then we put a card beside her and stopped the show. When she reached to gesture to me, the PECS specialist guided her to pick up the picture and hand it to me. No issues. Very quickly though, she showed what she could do. Working with the PECS specialist, within a few more trials the Bear showed that without any hesitation she could retrieve a binder out of arms reach (she had never used a binder before), tear the PECS card off of the velcro, walk across the room to the PECS specialist - who was deliberately ignoring her – and get her attention, grab the specialist’s hand and flip it over, and put the PECS card in her palm to request the show. She could do this consistently. We were quite surprised at her ability and her persistence, as we were deliberately being as uncommunicative as possible see how she would react. As the specialist said, you can’t teach persistence. The child has to want top do it. And the Bear clearly wanted to communicate.
To finish phase 2 we need the Bear to demonstrate that she can hand the card to the correct person, i.e. the one to whom she should be making the request at that time. This seems to be no issue, so it is on to phase 3. At this point we need to teach her to select the right picture to represent what she wants to communicate. Techniques include selecting from a choice of the correct card versus a blank card, and then choosing between two (and then more) non-blank cards. Given that she is currently scrutinizing the cards we think that she will grasp this reasonably quickly.
One of the things I like about PECS is that it follows the Bear’s lead. It is up to her to initiate the interaction on an ongoing basis. It is her way of communicating with us. At IBI they currently use it for her to request her ‘milk’, snack, books, access to the play room, etc. At home we will be using it pretty much for everything she might want to communicate with us. The beauty of it is once she has grasped the concept of discriminating between pictures, we can use pictures of pretty much anything. By putting words underneath the pictures there is evidence that PECS can help children learn how to read. By fading from photographs to symbols (we currently use a mix of both) we can introduce more symbolic concepts rather than just tangible items. And there is some evidence that the use of PECS helps children to learn to talk. While this last point is a goal, regardless of whether she learns to speak we see PECS as giving her a ‘voice’ sooner, rather than later, until she can learn to read and write.
So far, our experience has been entirely positive. One day in the not too distant future the Bear will be able to use PECS to give us her thoughts, but given the speed at which she has taken to it, I’m guessing that she will endorse PECS too.
Given that she does not speak (although she produces a host of sounds, some of them incredibly cute), and currently does not read (to the best of our knowledge, anyway) or write, this is a challenge. She is getting quite good at gesturing, and is quite capable of taking my hand and leading me to where she wants me to go, directing my hand to the object she seeks, or asking to be picked up, etc. But gesturing is not always an option, and something more is required.
We – or more accurately, our IBI providers - first introduced PECS, or Picture Exchange Communication System, to help fill the gap. PECS is quite literally what the name suggests. The student can exchange one or more pictures with another person to communicate a request, a thought, or anything that can reasonably be displayed or symbolized on a picture card. The IBI providers said that “we know that she has preferences, so we started using pictures as a way to get her to tell us what they are.” She caught on quickly, and we all decided to adopt this as a means of communications everywhere.
The PECS methodology has seven phases:
1 – teaching the student to initiate communications by exchanging a single picture for a highly desired item
2 – teaching the student to be a persistent communicator, to actively seek out their picture and travel to someone to make a request
3 – learning to discriminate between pictures and selecting the picture that represents the item they want
4 – learning the use of sentence structure to make a request in the form of “I want ____”
5 –responding to the question “What do you want?”
6 – learning to comment about things in their environment, both spontaneously and in response to questions
7 – vocabulary expansion, using attributes such as size, shape, and color in requests.
We’re not rigidly following the methodology, but are using it as a guide. The Bear is currently finishing phase 2. We’ve started PECS at home, with assistance from our SLP and a PECS specialist from the regional Special Needs organization, and have been very successful so far. We were quite surprised at how good the Bear already was at using it.
To assess her level, the SLP, PECS specialist and I sat her in front of a Teletubbies DVD (the Bear obviously gets her taste in videos from her mother), and then stopped the show. She looked around, and then gestured to me, and we started the video again. Then we put a card beside her and stopped the show. When she reached to gesture to me, the PECS specialist guided her to pick up the picture and hand it to me. No issues. Very quickly though, she showed what she could do. Working with the PECS specialist, within a few more trials the Bear showed that without any hesitation she could retrieve a binder out of arms reach (she had never used a binder before), tear the PECS card off of the velcro, walk across the room to the PECS specialist - who was deliberately ignoring her – and get her attention, grab the specialist’s hand and flip it over, and put the PECS card in her palm to request the show. She could do this consistently. We were quite surprised at her ability and her persistence, as we were deliberately being as uncommunicative as possible see how she would react. As the specialist said, you can’t teach persistence. The child has to want top do it. And the Bear clearly wanted to communicate.
To finish phase 2 we need the Bear to demonstrate that she can hand the card to the correct person, i.e. the one to whom she should be making the request at that time. This seems to be no issue, so it is on to phase 3. At this point we need to teach her to select the right picture to represent what she wants to communicate. Techniques include selecting from a choice of the correct card versus a blank card, and then choosing between two (and then more) non-blank cards. Given that she is currently scrutinizing the cards we think that she will grasp this reasonably quickly.
One of the things I like about PECS is that it follows the Bear’s lead. It is up to her to initiate the interaction on an ongoing basis. It is her way of communicating with us. At IBI they currently use it for her to request her ‘milk’, snack, books, access to the play room, etc. At home we will be using it pretty much for everything she might want to communicate with us. The beauty of it is once she has grasped the concept of discriminating between pictures, we can use pictures of pretty much anything. By putting words underneath the pictures there is evidence that PECS can help children learn how to read. By fading from photographs to symbols (we currently use a mix of both) we can introduce more symbolic concepts rather than just tangible items. And there is some evidence that the use of PECS helps children to learn to talk. While this last point is a goal, regardless of whether she learns to speak we see PECS as giving her a ‘voice’ sooner, rather than later, until she can learn to read and write.
So far, our experience has been entirely positive. One day in the not too distant future the Bear will be able to use PECS to give us her thoughts, but given the speed at which she has taken to it, I’m guessing that she will endorse PECS too.
Monday, May 01, 2006
Peek-A-Boo With The Bear
Just a quick story about The Bear (my 2 year old daughter's nom de net).
Our house is open concept, with the kitchen beside the living room, separated by four big posts. Two couches face one another across the living room and are perpendicular to the kitchen. I was in the kitchen and the Bear was sitting on one of the couches, minding her own business, when I thought I'd try and engage her in a game of peek-a-boo.
"Peek-a-boo!" She looks round, and when she sees me I duck behind the kitchen island.
"Peek-a-boo!" She looks at me and smiles. I hide and pause, trying to generate a sense of anticipation.
"Peek-a-boo!" She smiles and begins to bounce up and down on the couch. I duck again, and sneak over behind the end post separating the two rooms.
"Peek-a-boo!" She's now fully engaged in the game, bouncing up and down and clearly enjoying herself. I sneak over and crouch beside the other couch, which doesn't line up with her couch, so I can hide at the side.
"Peek-a-boo!" She sees me at the side of the couch. I hide and pause again.
"Peek-a-... what?" Where'd she go? I look up, and the Bear had crept quietly over and is standing on my couch, hands on the arm rest, leaning over, looking down on me and giggling.
Dad was outsmarted by the Bear.
Our house is open concept, with the kitchen beside the living room, separated by four big posts. Two couches face one another across the living room and are perpendicular to the kitchen. I was in the kitchen and the Bear was sitting on one of the couches, minding her own business, when I thought I'd try and engage her in a game of peek-a-boo.
"Peek-a-boo!" She looks round, and when she sees me I duck behind the kitchen island.
"Peek-a-boo!" She looks at me and smiles. I hide and pause, trying to generate a sense of anticipation.
"Peek-a-boo!" She smiles and begins to bounce up and down on the couch. I duck again, and sneak over behind the end post separating the two rooms.
"Peek-a-boo!" She's now fully engaged in the game, bouncing up and down and clearly enjoying herself. I sneak over and crouch beside the other couch, which doesn't line up with her couch, so I can hide at the side.
"Peek-a-boo!" She sees me at the side of the couch. I hide and pause again.
"Peek-a-... what?" Where'd she go? I look up, and the Bear had crept quietly over and is standing on my couch, hands on the arm rest, leaning over, looking down on me and giggling.
Dad was outsmarted by the Bear.
Wednesday, April 19, 2006
Autism, Genetics, and Evolution
This is a post that I was hoping someone else would write. I'm not an expert in any of the three subjects, but believe that there may be some interesting links between them. If anyone knows more, feel free to comment and/or rebut. This is a learning exercise and I will appreciate any feedback. Most people, including me, believe that autism has a major genetic/epigenetic component. While I suggested in my first post that in some (and maybe even many) cases there may be something more than just genetics or inherited epigenetics required to cause autism, the evidence of - at a minimum - a genetic/epigenetic link is undeniable.
Genes encode the information required to make proteins, which are the basic building blocks in organisms (including us), and the creation of proteins determines the structural, biochemical, physiological, and behavioral characteristics of an organism. An allele is any one of a number of viable DNA codings of a gene occupying a given locus (position) on a chromosome, i.e. one option within the set of potential expressions for that gene. An individual’s genotype for a gene is the set of alleles that the gene possesses. In humans there are normally two copies of each chromosome, thus two alleles make up the individual’s genotype. The phenotype of an individual (i.e. the appearance or specific traits) is the result of the expression of the genotype, as modified by environmental factors and potentially some amount of random variation.
Genetics is the science of genes, heredity (the transfer of characteristics from parent to child), and the variation of organisms. Genetics is linked to evolution through population genetics, which is the study of the distribution and changes in allele frequencies (the measure of the relative frequency of an allele occurring) of genes within a population under the influence of the four factors of evolution: natural selection, genetic drift, mutation, and migration. Thus genes, as well being the blueprint for the ‘construction’ of the individual and of populations, are a link to our ancestors, back to the beginnings of humanity.
Mutations are the drivers of evolution, and are changes to the genetic material. They can be caused by copying errors during cell division, exposure to environmental factors (e.g. radiation, chemicals, viruses), or occur naturally during meiosis (the process of dividing a diploid cell, i.e. with two sets of chromosomes, into four haploid cells – e.g. sperm or ovum – each with one half of the chromosomes of the original cell that have been resorted to mix the original maternal and paternal genetic information). Most mutations have no significant effect, and the changes are reverted via DNA repair before they become permanent. Those that affect the organism become subject to the rules of natural variation (for beneficial and deleterious mutations) or genetic drift (neutral variations).
For genes to get into the next generation, the gene’s owner has to reproduce and pass them on to the next generation. Without reproduction, a genetic expression, no matter how beneficial to the individual, dies with that individual. A flippant example: a person can have a variation that enables them to unfailingly predict the rise and fall of stock prices (which could potentially be a huge advantage in life). But if that person does not reproduce then that allele or genetic variation dies with them. Natural selection is the process by which favorable alleles – those that benefit the individual’s fitness (in genetic terms the ability to survive and reproduce) - tend to accumulate over time. Deleterious genetic variations tend to reduce the chance of the host to reproduce, and therefore these alleles tend to be removed from the gene pool over time.
Genetic drift is the process by which neutral variations – those that do not influence the capability to reproduce of either the individual or the species - become either an increasing or decreasing percentage of the population. Statistical theory suggests that neutral genes will reproduce with a normal distribution, but each generation of genetic distribution is unique, and builds upon the former. So if a genetic variation is present in 50% of the population, statistical theory says that the variation will be passed on through a normal distribution of probabilities. Let’s say that the genes through random variation get passed on to 51% of the population in the next generation. The new starting point is therefore not 50% but 51%. Over time neutral variations will either become ‘fixed’, i.e. universal within a population, or extinct. The smaller and more isolated a population is, the faster that genetic drift will drive an allele up or out.
Migration occurs when organisms move from one location to another, and is one of the ways in which genetic variations move into new locations and new populations. The genetic host begins or joins a new population and successfully reproduces, so that their genes become part of the new population’s genetic base. Again, depending on the number of hosts involved in the migration and the success of the new variation in the new environment, the processes of natural selection and/or genetic drift will apply.
Human migration can be traced genetically via two different streams: mitochondrial DNA and Y chromosomes. Mitochondrial DNA (mtDNA) is passed only from mother to offspring and varies little over time, changing through mutations. Analysis of these mutations enables us to track matrilineage, right back to a common ancestor, dating perhaps 150,000 years ago. Y chromosomes are passed only from fathers to sons, and the same type of analysis yields a common ancestor between 60,000 and 90,000 years ago. By tracking variations in mtDNA and Y chromosomes it is possible to track the movement of humanity over time, out of Africa. Two schools of thought exist on this – the Oxford school, which suggests a migration out of Africa 85,000 years ago populated the rest of the world, and the Cambridge school, which suggests a migration 60,000 years ago, followed by at least one subsequent migration.
Regardless of which school is correct (which should be answered by the Genographic Project), the net result is that while all of current humanity has two common ancestors, the paths of humanity diverged tens of thousands of years ago. While there have been subsequent migrations and intermixing of various populations within some geographies, one can also see where the paths of humanity have diverged. For example, the ancestors of the European and Asian branches of humanity diverged perhaps 40,000 years ago. The Mongol empire, spanning from Eastern Europe to China and Korea, was able to unite many of the eastern and western descendents of this migration during parts of the 13th and 14th centuries, and certain elements within the Mongol empire were very prolific (nearly 8% of men living in the former Mongol empire or 0.5% of the male population of the world appear to be descendents of one man), but even this empire did not include Japan, which successfully fought off Mongol invasions, and there have been no major migrations out of Central Asia or Eastern Europe of a scale to link the Asian and Western European haplogroups in any significant way in the post-Mongol empire period. The net result is that any genetic variation (allele frequency) shared in to any significant degree between people of Japanese, central Asian, and Western European descent has to have existed for tens of thousands of years.
The net effect of all of the four evolutionary forces is that there is no stasis. Mutations introduce new alleles (i.e. genetic variation) into a population. An allele will either increase or decrease in frequency within a population. Natural selection and genetic drift ensure that any variation is either on the way up or out, although over the course of many generations. Migration enables alleles to move from one population or location to another, at which point they become subject to the other forces of evolution. And to be clear, the process is amoral. Genetic variations increase or decrease in frequency depending on their ability to influence the owning organisms’ fitness, i.e. ability to successfully reproduce, regardless of the relative merits of the variation from a moral perspective.
What does this have to do with autism?
Autism clearly has a genetic component, thought to include perhaps four or five, or perhaps ten or more genes. The alleles linked to autism must adhere to the same rules as every other genetic variation. In other words, natural selection, genetic drift, mutations, and migration all apply. So, for the genes that cause autism to continue to exist, they must either confer a benefit to the host’s fitness, be neutral in implication, or must be the result of a regularly occurring set of mutations.
Autism may be in part the result of regularly occurring genetic mutation. But, if this mutation were to occur spontaneously, with no causative genetic variation, then if one person in a family had autism, the odds of a sibling also having autism would be no different than those of the population as a whole, i.e. 1 in 166. Obviously this is not the case. Since autism is more likely to occur within families, then if it is a mutation, the potential for mutation must be part of the family’s genetic heritage, and subject to the normal rules of population genetics and evolution.
As part of natural selection, an allele must reproduce at the same or higher rate than the population as a whole. If it does not then it will become increasingly rare over time. To be controversial, there is evidence that autism in its current manifestation is not a positive or neutral variation from a fitness perspective (Billstedt, Gillberg and Gillberg, “Autism after Adolescence: Population-based 13-to 22-year Follow-up Study of 120 Individuals with Autism Diagnosed in Childhood” in J Autism Dev Discord, 2005 Jun;35(3):351-60) (Howlin, Goode, Hutton, Rutter, “Adult outcome for children with autism”, in J Child Psychol Psychiatry, 2004 Feb;45(2):212-29) (Howlin, “Outcome in high-functioning adults with autism with and without early language delays: implications for the differentiation between autism and Asperger syndrome” in J Autism Dev Discord 2003 Feb;33(1):3-13) and others . Some autistics obviously procreate. The issue is whether this rate of procreation occurs at a level sufficient to maintain the existing prevalence rate of autism over time, and the evidence from above is that it does not. Given that rates of inheritance can range from 2% to 8% or even 10% (Constantino JN et al, 2006), any reduced rate of reproduction for the allele combinations that cause autism would relatively quickly have a sizeable negative impact on the prevalence or frequency of the individual alleles. And reduced reproduction combined with genetic drift would presumably cause frequency to quickly spiral downwards.
On this basis, the alleles that cause autism should have been eliminated long ago. There is no clear evidence of when these alleles first entered the human gene pool, but it is possible to make some assumptions. The theory of a common human ancestor and migration out of Africa suggests that for autism to be a world-wide phenomenon, it would have had to have been the result of either a) similar mutations (in effect, if not type) occurring within geographically separate populations, b) migration between populations on a scale great enough to ensure relatively common prevalence rates, or c) the alleles that cause autism existed prior to humanity diverging on different paths. The first option is a stretch from a probability perspective. There is no known historical migration to support the second option. That leaves option c.
If option c is correct, then in the example of Japan compared to Western Europe, the divergence in populations due to migration occurred probably 40,000 years ago. Assuming 30 to 35 years per generation (which is conservative), there have been 1100 to 1300 generations since the two populations diverged. This presumably should have been enough time to eliminate the various alleles that cause autism from the gene pool, if they are in fact deleterious.
Obviously this has not occurred. This means that the individual alleles that in combination cause autism must individually or in lesser combinations have had a beneficial effect to compensate for the reduced reproductive rates of autistics. There may be some evidence for this in the finding that parents of autistics are more likely to be systemizers (e.g. physicists, engineers, mathematicians), which may confer an advantage in some environments. One can speculate how much of an advantage systemizing might have been in historical agrarian societies, as distinct from today’s much more urban environment, but this advantage may have existed over time, and may be increasing with the adoption of universal public education, the move from agricultural and artisan to more systems oriented employment, and more opportunities for upward social mobility. There may also be other benefits resulting from the individual alleles or combinations of alleles that would also provide a natural advantage. But for autism to be entirely genetic, a separate natural advantage would have to exist for each of the alleles that contribute to the condition (since each allele can exist independently of the others), to compensate for autism’s overall reduction in ‘fitness’.
There is also another possibility. Given the potential for exogenous factors to play a causative role in at least some cases, it is also possible that at least some of the combinations of alleles that currently cause autism may not have always had a negative effect. Since allele combinations can affect more than one trait, it is possible that the autistic genes have both a positive and potentially a negative impact on fitness, but that the negative impact could require additional causative factors to pull the trigger –factors that historically might have been less prevalent. As an example, there is some evidence of autoimmune issues within the families of autistics. Perhaps without the additional stress of an autoimmune ‘hit’, the negative impact of the alleles may not have been triggered, rendering their impact on the host as neutral or mildly advantageous. Other suggested factors could include other immune issues, enhanced vulnerability to viral infections or environmental toxins.
In any of these cases, these alleles that in combination cause autism may not historically have had as significant a negative impact on autistic reproductive fitness – the vulnerability may have existed but not have been triggered - allowing the benefits of the alleles to further their reproduction over time. Hypothetically, perhaps these genes benefited autistic intelligence but without a corresponding negative sensory integration impact. In this case the “hidden hordes” might have existed, but without enough of the negative implications of autism to affect their fitness over time. More recent changes in the environment (not necessarily over the last ten years, but accumulating over decades or the last couple of centuries) may be now having more of an effect on vulnerable individuals. If this is the case then this effect may also be increasing over time.
Just one of a range of possibilities to think about...
---
Update - Related posts:
Autism and Minicolumns (Sept 5, 2006)
Autism and the Evolution of the Brain (Oct 13, 2006)
Genes encode the information required to make proteins, which are the basic building blocks in organisms (including us), and the creation of proteins determines the structural, biochemical, physiological, and behavioral characteristics of an organism. An allele is any one of a number of viable DNA codings of a gene occupying a given locus (position) on a chromosome, i.e. one option within the set of potential expressions for that gene. An individual’s genotype for a gene is the set of alleles that the gene possesses. In humans there are normally two copies of each chromosome, thus two alleles make up the individual’s genotype. The phenotype of an individual (i.e. the appearance or specific traits) is the result of the expression of the genotype, as modified by environmental factors and potentially some amount of random variation.
Genetics is the science of genes, heredity (the transfer of characteristics from parent to child), and the variation of organisms. Genetics is linked to evolution through population genetics, which is the study of the distribution and changes in allele frequencies (the measure of the relative frequency of an allele occurring) of genes within a population under the influence of the four factors of evolution: natural selection, genetic drift, mutation, and migration. Thus genes, as well being the blueprint for the ‘construction’ of the individual and of populations, are a link to our ancestors, back to the beginnings of humanity.
Mutations are the drivers of evolution, and are changes to the genetic material. They can be caused by copying errors during cell division, exposure to environmental factors (e.g. radiation, chemicals, viruses), or occur naturally during meiosis (the process of dividing a diploid cell, i.e. with two sets of chromosomes, into four haploid cells – e.g. sperm or ovum – each with one half of the chromosomes of the original cell that have been resorted to mix the original maternal and paternal genetic information). Most mutations have no significant effect, and the changes are reverted via DNA repair before they become permanent. Those that affect the organism become subject to the rules of natural variation (for beneficial and deleterious mutations) or genetic drift (neutral variations).
For genes to get into the next generation, the gene’s owner has to reproduce and pass them on to the next generation. Without reproduction, a genetic expression, no matter how beneficial to the individual, dies with that individual. A flippant example: a person can have a variation that enables them to unfailingly predict the rise and fall of stock prices (which could potentially be a huge advantage in life). But if that person does not reproduce then that allele or genetic variation dies with them. Natural selection is the process by which favorable alleles – those that benefit the individual’s fitness (in genetic terms the ability to survive and reproduce) - tend to accumulate over time. Deleterious genetic variations tend to reduce the chance of the host to reproduce, and therefore these alleles tend to be removed from the gene pool over time.
Genetic drift is the process by which neutral variations – those that do not influence the capability to reproduce of either the individual or the species - become either an increasing or decreasing percentage of the population. Statistical theory suggests that neutral genes will reproduce with a normal distribution, but each generation of genetic distribution is unique, and builds upon the former. So if a genetic variation is present in 50% of the population, statistical theory says that the variation will be passed on through a normal distribution of probabilities. Let’s say that the genes through random variation get passed on to 51% of the population in the next generation. The new starting point is therefore not 50% but 51%. Over time neutral variations will either become ‘fixed’, i.e. universal within a population, or extinct. The smaller and more isolated a population is, the faster that genetic drift will drive an allele up or out.
Migration occurs when organisms move from one location to another, and is one of the ways in which genetic variations move into new locations and new populations. The genetic host begins or joins a new population and successfully reproduces, so that their genes become part of the new population’s genetic base. Again, depending on the number of hosts involved in the migration and the success of the new variation in the new environment, the processes of natural selection and/or genetic drift will apply.
Human migration can be traced genetically via two different streams: mitochondrial DNA and Y chromosomes. Mitochondrial DNA (mtDNA) is passed only from mother to offspring and varies little over time, changing through mutations. Analysis of these mutations enables us to track matrilineage, right back to a common ancestor, dating perhaps 150,000 years ago. Y chromosomes are passed only from fathers to sons, and the same type of analysis yields a common ancestor between 60,000 and 90,000 years ago. By tracking variations in mtDNA and Y chromosomes it is possible to track the movement of humanity over time, out of Africa. Two schools of thought exist on this – the Oxford school, which suggests a migration out of Africa 85,000 years ago populated the rest of the world, and the Cambridge school, which suggests a migration 60,000 years ago, followed by at least one subsequent migration.
Regardless of which school is correct (which should be answered by the Genographic Project), the net result is that while all of current humanity has two common ancestors, the paths of humanity diverged tens of thousands of years ago. While there have been subsequent migrations and intermixing of various populations within some geographies, one can also see where the paths of humanity have diverged. For example, the ancestors of the European and Asian branches of humanity diverged perhaps 40,000 years ago. The Mongol empire, spanning from Eastern Europe to China and Korea, was able to unite many of the eastern and western descendents of this migration during parts of the 13th and 14th centuries, and certain elements within the Mongol empire were very prolific (nearly 8% of men living in the former Mongol empire or 0.5% of the male population of the world appear to be descendents of one man), but even this empire did not include Japan, which successfully fought off Mongol invasions, and there have been no major migrations out of Central Asia or Eastern Europe of a scale to link the Asian and Western European haplogroups in any significant way in the post-Mongol empire period. The net result is that any genetic variation (allele frequency) shared in to any significant degree between people of Japanese, central Asian, and Western European descent has to have existed for tens of thousands of years.
The net effect of all of the four evolutionary forces is that there is no stasis. Mutations introduce new alleles (i.e. genetic variation) into a population. An allele will either increase or decrease in frequency within a population. Natural selection and genetic drift ensure that any variation is either on the way up or out, although over the course of many generations. Migration enables alleles to move from one population or location to another, at which point they become subject to the other forces of evolution. And to be clear, the process is amoral. Genetic variations increase or decrease in frequency depending on their ability to influence the owning organisms’ fitness, i.e. ability to successfully reproduce, regardless of the relative merits of the variation from a moral perspective.
What does this have to do with autism?
Autism clearly has a genetic component, thought to include perhaps four or five, or perhaps ten or more genes. The alleles linked to autism must adhere to the same rules as every other genetic variation. In other words, natural selection, genetic drift, mutations, and migration all apply. So, for the genes that cause autism to continue to exist, they must either confer a benefit to the host’s fitness, be neutral in implication, or must be the result of a regularly occurring set of mutations.
Autism may be in part the result of regularly occurring genetic mutation. But, if this mutation were to occur spontaneously, with no causative genetic variation, then if one person in a family had autism, the odds of a sibling also having autism would be no different than those of the population as a whole, i.e. 1 in 166. Obviously this is not the case. Since autism is more likely to occur within families, then if it is a mutation, the potential for mutation must be part of the family’s genetic heritage, and subject to the normal rules of population genetics and evolution.
As part of natural selection, an allele must reproduce at the same or higher rate than the population as a whole. If it does not then it will become increasingly rare over time. To be controversial, there is evidence that autism in its current manifestation is not a positive or neutral variation from a fitness perspective (Billstedt, Gillberg and Gillberg, “Autism after Adolescence: Population-based 13-to 22-year Follow-up Study of 120 Individuals with Autism Diagnosed in Childhood” in J Autism Dev Discord, 2005 Jun;35(3):351-60) (Howlin, Goode, Hutton, Rutter, “Adult outcome for children with autism”, in J Child Psychol Psychiatry, 2004 Feb;45(2):212-29) (Howlin, “Outcome in high-functioning adults with autism with and without early language delays: implications for the differentiation between autism and Asperger syndrome” in J Autism Dev Discord 2003 Feb;33(1):3-13) and others . Some autistics obviously procreate. The issue is whether this rate of procreation occurs at a level sufficient to maintain the existing prevalence rate of autism over time, and the evidence from above is that it does not. Given that rates of inheritance can range from 2% to 8% or even 10% (Constantino JN et al, 2006), any reduced rate of reproduction for the allele combinations that cause autism would relatively quickly have a sizeable negative impact on the prevalence or frequency of the individual alleles. And reduced reproduction combined with genetic drift would presumably cause frequency to quickly spiral downwards.
On this basis, the alleles that cause autism should have been eliminated long ago. There is no clear evidence of when these alleles first entered the human gene pool, but it is possible to make some assumptions. The theory of a common human ancestor and migration out of Africa suggests that for autism to be a world-wide phenomenon, it would have had to have been the result of either a) similar mutations (in effect, if not type) occurring within geographically separate populations, b) migration between populations on a scale great enough to ensure relatively common prevalence rates, or c) the alleles that cause autism existed prior to humanity diverging on different paths. The first option is a stretch from a probability perspective. There is no known historical migration to support the second option. That leaves option c.
If option c is correct, then in the example of Japan compared to Western Europe, the divergence in populations due to migration occurred probably 40,000 years ago. Assuming 30 to 35 years per generation (which is conservative), there have been 1100 to 1300 generations since the two populations diverged. This presumably should have been enough time to eliminate the various alleles that cause autism from the gene pool, if they are in fact deleterious.
Obviously this has not occurred. This means that the individual alleles that in combination cause autism must individually or in lesser combinations have had a beneficial effect to compensate for the reduced reproductive rates of autistics. There may be some evidence for this in the finding that parents of autistics are more likely to be systemizers (e.g. physicists, engineers, mathematicians), which may confer an advantage in some environments. One can speculate how much of an advantage systemizing might have been in historical agrarian societies, as distinct from today’s much more urban environment, but this advantage may have existed over time, and may be increasing with the adoption of universal public education, the move from agricultural and artisan to more systems oriented employment, and more opportunities for upward social mobility. There may also be other benefits resulting from the individual alleles or combinations of alleles that would also provide a natural advantage. But for autism to be entirely genetic, a separate natural advantage would have to exist for each of the alleles that contribute to the condition (since each allele can exist independently of the others), to compensate for autism’s overall reduction in ‘fitness’.
There is also another possibility. Given the potential for exogenous factors to play a causative role in at least some cases, it is also possible that at least some of the combinations of alleles that currently cause autism may not have always had a negative effect. Since allele combinations can affect more than one trait, it is possible that the autistic genes have both a positive and potentially a negative impact on fitness, but that the negative impact could require additional causative factors to pull the trigger –factors that historically might have been less prevalent. As an example, there is some evidence of autoimmune issues within the families of autistics. Perhaps without the additional stress of an autoimmune ‘hit’, the negative impact of the alleles may not have been triggered, rendering their impact on the host as neutral or mildly advantageous. Other suggested factors could include other immune issues, enhanced vulnerability to viral infections or environmental toxins.
In any of these cases, these alleles that in combination cause autism may not historically have had as significant a negative impact on autistic reproductive fitness – the vulnerability may have existed but not have been triggered - allowing the benefits of the alleles to further their reproduction over time. Hypothetically, perhaps these genes benefited autistic intelligence but without a corresponding negative sensory integration impact. In this case the “hidden hordes” might have existed, but without enough of the negative implications of autism to affect their fitness over time. More recent changes in the environment (not necessarily over the last ten years, but accumulating over decades or the last couple of centuries) may be now having more of an effect on vulnerable individuals. If this is the case then this effect may also be increasing over time.
Just one of a range of possibilities to think about...
---
Update - Related posts:
Autism and Minicolumns (Sept 5, 2006)
Autism and the Evolution of the Brain (Oct 13, 2006)
Monday, April 10, 2006
Demeaning Words
My second post (now to be my third) was heading off in a substantially different direction, when I came across JB Handley's response to the March 1 RFK article in Ginger's blog. JB Handley's response included the following:
"First off, we're parents. And you [the CDC], in covering your ass, have kidnapped our children's souls. In the wild, the consequence for what you've done is obvious, but being civilized, we will get you with the violence of truth. You see, unlike other body-snatchers, you've made a number of mistakes and left some very clear calling cards... You didn't take our children's souls, you just buried them. They're still there, waiting to come out".
Personally, I find this quite disturbing.
Let's be clear about a couple of things up front. First, this post is not aimed at Ginger. I have the greatest of respect for Ginger's energy, enthusiasm, and efforts, and have some sympathy for some (although not necessarily all) of her views. Her blog serves as a resource of autism information and events, especially those of interest to bio-meds, and this letter was posted as written. To omit or edit JB Handley's words would be doing a disservice to her readers.
Second, it is not intended as a personal attack on JB Handley or his objectives. One may agree or disagree with his views (I personally do not agree with his view - if I perceive it correctly - that all autism is the result of mercury poisoning), but that is not the subject of this post. And on a personal level, I do not know enough about Mr. Handley as a person to comment. To be clear, I am not intending to host a personal attack on JB Handley.
What I do strongly object to is his choice of words and metaphors. I strongly object to the description of autistic children as having their souls 'kidnapped' or 'buried', or that they are victims of 'body-snatchers'. I find the wording demeaning and offensive to my daughter, and think that it is uncalled for, unnecessary to get his point across, and totally unproductive.
I know that autism is not an easy diagnosis for a parent to accept. I also understand the motivation to 'do something', and to mobilize support for one's view, and to do what one considers right in the face of disagreement from others, regardless of whether one approaches autism from the perspective of societal 'acceptance', or 'cure', or any point in between. I understand efforts to motivate others to take action, and the use of rhetorical flourish to do so. But this does not excuse language or descriptions of autistic children (or autistics of any age) as being without a 'soul', or as victims of 'body-snatchers', the implication being that they are less than fully human.
My 33 month old daughter - after a rigorous assessment process - has a diagnosis of severe autism. She has considerable communications, sensory integration, and motor planning difficulties, plus a few significant medical issues that one may or may not consider co-morbidities, depending on one's point of view. Some may consider her diagnosis a 'disorder', others a 'natural variation'. But neither viewpoint relieves her of any of her humanity, or her dignity. Calling her soul-less deprives her of both.
One can make the point that autism is a medical issue (which, admittedly, will still be contentious in some quarters) without demeaning the humanity of those who have the diagnosis. But suggesting that autistics are anything less than human diminishes their worth in the eyes of the larger population that one is ultimately trying to influence. There is enough that divides the community of those who are linked through autism without resorting to language that labels autistics as anything less than fully human.
Personally, I know exactly where my daughter's soul is. It is firmly embedded in the little girl who smiles at me and raises her arms to be picked up and hugged. It is there, it has never left, and it is priceless. Those who cannot see it are looking in the wrong place.
"First off, we're parents. And you [the CDC], in covering your ass, have kidnapped our children's souls. In the wild, the consequence for what you've done is obvious, but being civilized, we will get you with the violence of truth. You see, unlike other body-snatchers, you've made a number of mistakes and left some very clear calling cards... You didn't take our children's souls, you just buried them. They're still there, waiting to come out".
Personally, I find this quite disturbing.
Let's be clear about a couple of things up front. First, this post is not aimed at Ginger. I have the greatest of respect for Ginger's energy, enthusiasm, and efforts, and have some sympathy for some (although not necessarily all) of her views. Her blog serves as a resource of autism information and events, especially those of interest to bio-meds, and this letter was posted as written. To omit or edit JB Handley's words would be doing a disservice to her readers.
Second, it is not intended as a personal attack on JB Handley or his objectives. One may agree or disagree with his views (I personally do not agree with his view - if I perceive it correctly - that all autism is the result of mercury poisoning), but that is not the subject of this post. And on a personal level, I do not know enough about Mr. Handley as a person to comment. To be clear, I am not intending to host a personal attack on JB Handley.
What I do strongly object to is his choice of words and metaphors. I strongly object to the description of autistic children as having their souls 'kidnapped' or 'buried', or that they are victims of 'body-snatchers'. I find the wording demeaning and offensive to my daughter, and think that it is uncalled for, unnecessary to get his point across, and totally unproductive.
I know that autism is not an easy diagnosis for a parent to accept. I also understand the motivation to 'do something', and to mobilize support for one's view, and to do what one considers right in the face of disagreement from others, regardless of whether one approaches autism from the perspective of societal 'acceptance', or 'cure', or any point in between. I understand efforts to motivate others to take action, and the use of rhetorical flourish to do so. But this does not excuse language or descriptions of autistic children (or autistics of any age) as being without a 'soul', or as victims of 'body-snatchers', the implication being that they are less than fully human.
My 33 month old daughter - after a rigorous assessment process - has a diagnosis of severe autism. She has considerable communications, sensory integration, and motor planning difficulties, plus a few significant medical issues that one may or may not consider co-morbidities, depending on one's point of view. Some may consider her diagnosis a 'disorder', others a 'natural variation'. But neither viewpoint relieves her of any of her humanity, or her dignity. Calling her soul-less deprives her of both.
One can make the point that autism is a medical issue (which, admittedly, will still be contentious in some quarters) without demeaning the humanity of those who have the diagnosis. But suggesting that autistics are anything less than human diminishes their worth in the eyes of the larger population that one is ultimately trying to influence. There is enough that divides the community of those who are linked through autism without resorting to language that labels autistics as anything less than fully human.
Personally, I know exactly where my daughter's soul is. It is firmly embedded in the little girl who smiles at me and raises her arms to be picked up and hugged. It is there, it has never left, and it is priceless. Those who cannot see it are looking in the wrong place.
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