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.

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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.

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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!

6 comments:

Craig Westover said...

What a marvelous insight!

Ian Parker said...

Thanks Craig, I appreciate that.

Vidya Ganesh said...

So true!!!! Thanks for sharing that thought.

And congratulations!!!! on bear eating with her hands for the first time. :). Must have been a proud moment for you. Wasn't it? :)

Ian Parker said...

Hi Vidya,

Thanks for the comment. Yes, we were thrilled when she started eating with her hands. She's since moved on to picking up banana and kiwi slices too (although I don't think she's totally thrilled with the banana texture).

Next steps, mastering spoons and straws!

Anonymous said...

I am sorry you feel the way you do. As parents of children with autism go you are a baby parent...so new to autism that you can't possibly know where these other parents of 8 year olds have been. It takes time to grow into this. Autism is a spectrum in which you may not have yet to experience every issue (and I hope you never have to) such as your child running away. These are life and death issues as the movie portrays and it is important for the outside world to realize how serious this is and how every aspect of a families life is affected. The financial burden alone can be staggering. The Time article actually had several inaccurate statements. (I personally know a staff member from Alpine) There is NOT one child in that entire school working for a packet of katchup! The article appeared intentionally misleading slanting away from ABA and into a "cheaper" version of treatment. The comparision of the 2 schools appeared as though the floortime school did a better job for less money. In truth there is still no clear scientfic evidence that this approach works for our children and although the article pointed that out it also craftly painted a picture of one school as open and friendly and the other as severe. Alpine Learning Group does have pictures all over the walls in the classrooms, just not in the hallways. In reference to the floortime school, the discussion about students standing in a line to jump into the water made me laugh as I pictured my son laughing at them, then throwing himself on the floor with a "yeah, make me" attitude. Our children thrive on structure. ABA is the only scientfically validated approach. That is not to say that parents (and I always tell parents with 3 year olds who ask me that I can understand trying everything that won't do any harm to their child so that no stone is left unturned, however for the most part this is more for the parent then the child and I again caution to look for the evidence of efficacy in any treatment you are trying) In the meantime, please look at the movie from a different perspective. Try to realize that after years of dealing with this disorder you may become a bit worn out too. You are new to this and probably have no yet had any big battles with your school district yet either. I wish you the very best in overcoming this disorder, however, don't judge those parents who have gone to the mat, mortgaged their homes and everything they have to help their children. The movie wanted people to know that. That is takes everything we have to help our kids. That it changes our entire lives and the lives of the siblings. My oldest son asked me once about something I had to do with my son with autism. I answered him that it wasn't anything to worry about. He said, "but mom, I need to know for when I have an autistic child." Now if that isn't a burden to carry around at 10 I don't know what is. We have to acknowledge that this changes our families and impacts us in momumental ways or the public at large won't realize what is needed. IDEA is still not fully funded!!!! I know a mom with twins with autism. She had to fight her school district for an appropriate education. 11 days in court, 2000 dollars a day, lost her home, and finally had to move out of town. We need to get the message out. This is truely a crisis of epic porportions. There are not enough service providers, not enough funding and every day can be a struggle. Of course there is hope. The movie didn't say there wasn't but it did give a VERY honest portrayal of life with this disorder especially when you have lived with it for awhile or have had to fight a few battles. Good luck with your daughter. I again wish you the very best for a maximized outcome. However, should you end up dealing with some of these very real struggles I also wish you find the support and understanding you will need.
Ann

Ian Parker said...

Hi Ann,

Thanks for dropping by and for the comment, although I think you may be over-interpreting some things.

I agree that we not have experienced every issue, and that some issues – such as running away – can be as serious as life or death. No dispute, and I have no issues with the video showing issues such as these. I also have no issue with the video showing the financial burden that families with autistic children may endure.

As for the Time article (which I don’t have in front of me now, but I have copies of at home), I personally found it to be surprisingly good, and the points I talked up (positively) were ”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.”

At no time did I weigh in on the merits of ABA vs Floortime/DIR, and to be honest, I was more pleased that the ABA/Floortime article showed that ”teaching is not just possible, but very achievable” than worried about a potential bias against ABA. Did I notice the bias? Yes, but to me it wasn’t as important as the demonstration that autistic children can learn and be taught – something that I know but that not every layperson knows. FWIW, my daughter is in IBI, not Floortime, so that should give some indication as to my thoughts.

Having said that, I do think that other methods also have merit, and believe that the best practices for autistic children include a variety of methods, depending on what one is attempting to teach/encouraging the child to learn. As an example, from what I know about RDI and from the experience of others I know (personally – including the head of the Bear’s IBI program - and through the internet) RDI has merit in teaching some skills, especially social skills. From what I can tell of IBI/ABA, it is not the best method of teaching these skills, as opposed to teaching scripts that one can apply as required (which is definitely not the same thing).

Regarding ABA being scientifically validated, I’d say yes and no. I found the following presentations to the (Canadian) Standing Senate Committee on Social Affairs, Science and Technology interesting, in that probably the one point of agreement between Michelle Dawson (an adult autistic and researcher with Dr Mottron’s group at the University of Montreal and Dr Gernsbacher’s lab in Wisconsin) on one side, and Dr. Peter Szatmari (Faculty of Health Science, McMaster University, Canadian Autism Intervention Research Network), and Dr. Eric Fombonne (Director of Child Psychiatry, McGill University Health Centre) on the other is that there is not yet enough research on ABA, what works, what doesn’t and why, even though the two sides differed significantly in terms of the how to interpret this gap and how to proceed in light of it. And evaluation of other techniques is underway, including one two year DIR/Floortime study at York University in Toronto that I know of. But again, I’ve so far put most of my money on IBI, while also pursuing other interventions.

Regarding ASD children thriving on structure, I’m not so sure that this is universally true. My daughter LOVES both novelty and spontaneity. Of course we have a routine that we follow (who doesn’t, NT or ASD?), but some of her best moments occur when that routine is broken. I interpret some of her gestures as a deliberate request to violate routine in order to introduce more novelty. In this she may be atypical, but she does demonstrate that the need for structure is neither universal nor absolute.

Regarding school, no we have not yet started along that path. I did exchange e-mails, phone conversations, and meet in May/June 2006 with the principal and the autism consultant of the (public school) kindergarten that the Bear will be attending in Sept 2007, to begin the familiarization process, and while I hope that all will go well, I’ve heard too many parents’ stories to believe that a successful first outcome is guaranteed.

So, let’s get to my objections to the video. Again, I have no issues with an honest portrayal. As I said in the post, “ I quite like the idea of a video to explain our lives to others.“ But this video made life out to be an unending disaster, while deliberately omitting the good parts (as was later admitted). Yes, these families, and many others, face severe financial difficulties, and yes it is legitimate to show this. Yes, these families face coping issues, and yes it is legitimate to show this too. But by deliberately manipulating events to provoke negative reactions (later admitted) and by deliberately leaving out any real positive moments, the video was not an honest portrayal. In addition, the parents themselves in this video had some issues. Aside from the easy one of the parent talking about a murder-suicide with her daughter (which is a matter for Child Services, IMO), and talking about this in front of her (compounding the issue), it seemed pretty clear to me that these parents did not understand their children. Yes, I’m new to this, in that we now have two years of post-autistic realization under our belts rather than six or eight, but even I could see that the children were very clearly trying to communicate with their parents, and that their attempts were being missed or ignored.

You wrote, “don't judge those parents who have gone to the mat, mortgaged their homes and everything they have to help their children. The movie wanted people to know that. That is takes everything we have to help our kids.” Assuming you mean not just the parents in the video, then I don’t judge these parents, other than positively, for their willingness to help their children. And I have never stated anywhere that I don’t want people to show the financial difficulties that are potentially involved in raising an ASD child. But the fact that a parent spends a lot of time and money does not automatically mean that they understand their child or have learned the skills necessary to communicate with them.

As I wrote above,

“A major point left out of both the Time write-up and the video is that learning and assistance for parents (emphasis added) 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.”

It struck me when watching the video how much the parents could gain from training - and how much parental training is probably in short supply in most areas. My child is non-verbal, and while we are using PECS, we also watch her for any communications attempts that she initiates outside of ‘normal’ communications techniques. This didn’t come totally naturally (at least to me) – we learned how to do this, and I wouldn’t suggest that we are doing it particularly well. But we did learn and are still learning, and it is paying off for both parents and child. Most of the efforts of programs such as ABA seem (at least from my perspective) to concentrate on teaching the child. But by learning to understand the child the parent can also increase communications and reach them when they are most receptive, i.e. when the child is initiating and therefore motivated. Who is teaching this skill to parents?

Regarding your statements that it (autism) ”changes our entire lives and the lives of the siblings” and “We have to acknowledge that this changes our families and impacts us in momumental ways or the public at large won't realize what is needed. IDEA is still not fully funded!!!!, and ”We need to get the message out. This is truely a crisis of epic porportions. There are not enough service providers, not enough funding and every day can be a struggle.”, I would agree. Nowhere have I stated that I disagree with getting the message out that we as families need help and that we are being shortchanged in this.

What I disagree with is a one-sided portrayal that inaccurately portrays children with ASD - and by implication my child – as a ‘nightmare’ inflicted on us and potentially on others. While parenting her definitely has its challenges, including specific challenges related to ASD, she is not a ‘nightmare’ by any stretch of the imagination. And others who see this video but do not understand autism may not see her as she is, but expect her to be like the portrayals they have seen. This does absolutely nothing in terms of their willingness to accept her and accommodate her. Instead, I would expect them to ‘run like hell’ when they see her coming. At a minimum I would expect them to be wary of her, and on their guard. And how does this help her? After her IBI my daughter sometimes wants to go to the drug store down the street and look around, and I oblige her. While a couple of the staff are a bit wary, most quite genuinely welcome her. I would suggest that the reception would be different had they have seen the video before meeting her.

An honest and accurate portrayal would show both the good and the bad: the abilities to communicate, interact, and learn and the often great difficulties encountered in doing so. It would show that our children have difficulties to be endured, mastered and overcome, and would make the case that with assistance – deserved assistance – that great things can be accomplished. But it would also make the case that they are human beings, worthy of consideration and respect. Whatever effort I put into helping my daughter, the efforts required of her will greatly surpass mine. In making those efforts, she deserves respect. I think that the Time articles did a reasonable job in conveying this. The video, on the other hand, IMO did not.