A couple of weeks ago I received an offer on my blog email (which I must confess I don't check very regularly) inviting me to join the Wellsphere Health Bloggers Network. I thought about it and decided to join up. You're thinking "So?"
The reason I decided to accept was that this offers a potential opportunity to discuss autism with a wider group of readers outside of the autism community. When I first started this blog, I expected that most readers would be from the community of those touched by autism. While there is a wide spectrum of opinions within this community, there is - to really stretch a point - at least some common basis of knowledge and understanding about ASD. Outside of this community, this probably does not exist.
Unfortunately for the Bear, she lives in a society that not only does not understand her, but one that is often exposed to extremely negative perceptions about ASD and therefore - by implication - her. What society often sees is snippets of information - often inaccurate or incomplete - that suggests ideas such as 'autism is worse than cancer' or that autistics lack some of the features that make us human (um, then what does that make them?), or - my personal favourite - that "Without treatment, kids like this are usually institutionalized by the time they're adolescents. They're living in restraints, living in diapers. They have to have their teeth removed because they bite." That last one was actually written in a major Canadian newspaper by a respected columnist, quoting someone from F.E.A.T of BC, and accepted without question or critical comment.
Even within those who work with autistics and would hopefully know better, misunderstandings and misperceptions are not exactly uncommon. As an example, in the case of Carly Fleischman, I was disappointed by the amount of surprise, and especialy the amount of initial skepticism and/or disbelief of some who worked with her. I'm also disapointed by the unwillingness of some who should know better to consider that if Carly is an isolated case, then this may be due to lack of opportunity rather than lack of potential. I'm a believer that expectations influence results, and low expectations will often be met.
To be clear, I'm not suggesting that society should be sheltered from the trials and tribulations of ASD. I also understand - although I strongly disagree with - some of the excesses spoken by 'autism advocates' to paint a bleak picture to gain support for autism services. But how does this negative advocacy help society to accept my bubbly, smiling, happy little girl for whom she really is and is in the process of becoming?
As I wrote elsewhere,
"I believe that one of the things we need to work towards is ensuring that autistics are ‘just another group’ towards whom tolerance and acceptance is extended, accepting autistics for who they are now and for whom they will become. Regardless of whether one takes a neurodiversity perspective, a ‘cure’ perspective, or is within the great swath of opinion in between, we all have an interest in having society accept autistics, and accept and endorse the right of accommodation where required."
To my mind, the way that we will get there is through a greater understanding of ASD and autistics. As such, I decided to take the opportunity to potentially reach a wider audience, and to offer a more balanced point of view. I know that many within our community do not share all (or any?) of my views, and I am no more than one voice among many. I will be clear that I am not a spokesperson for autism, but instead am offering an opinion. But I will take this opportunity, for the sake of my daughter and others like her. And if you disagree with my posts, well, that's what comments are for.
Friday, July 04, 2008
Tuesday, June 10, 2008
Normal Female
As part of the process and follow-up we went through to secure the Bear’s ASD diagnosis, we were eventually offered access to genetic testing. My first post was about autism and genetics, in which I suggested that while ASD has clear genetic links, there is evidence from MZ twin studies that more than just genetics or epigenetics is required to explain a significant proportion of ASD cases. As such, I was interested in what such testing might find.
I’ve also previously written some thoughts here on pre-natal genetic testing, if anyone is interested. But at this point, genetic testing of the Bear was presumably past most of the potential moral hazard issues. As such, I figured, why not? If any issues were to be detected then at least we would know and could plan for them.
So, last summer the Bear and I met with a Doctor who specializes in genetics and apparently ASD too, and went through all of the family history. The Doctor explained what they were looking for - in some cases particular alleles, in other cases duplications or omissions of genetic material – and how the testing would be done, and we agreed to go ahead. Some of the testing was to be done in the U.S., so we also had to fill out a form to get OHIP to cover this out of country work. It was approved, and we could proceed.
We waited until September to get the blood work done, as we wanted to combine it with a couple of other tests (regular stuff – nothing fancy). Let’s just leave it at saying that pinning the Bear down to draw blood is not an easy feat (she is quite strong! And feisty!), so we prefer to do this as infrequently as possible. We managed to get the blood with most limbs still intact (ours, not hers – she was fine), and off went the samples to various locations in Canada and the US for the genetic testing.
Four months after the blood draw the Hospital for Sick Children in Toronto (AKA Sick Kids) had announced another one of those
‘breakthrough autism tests’. We thought that we had probably missed this one, but this test too was performed.
It took several months for all of the results to come back, and last month I went in for a meeting with the Doctor to discuss the results. The test interpretation read:
"Microarray analysis of 622 loci using 1887 BAC clones for the subtelomeres, pericentromeric regions and known genetic syndromes (see attached list) detected no abnormalities in the DNA of this specimen. Thus, this is a normal microarray result showing no alterations of the loci tested."
All tests were negative. The Doctor told us that further research was being conducted, and that we should come back in about five years to try again. I wasn’t surprised at the results, but I was a bit relieved. Future tests may ultimately detect a genetic variation that caused the Bear’s autism, but I would not be surprised if the result instead is the identification of a genetic vulnerability rather than a genetic cause. Personally, I lean to immune/auto-immune causation in her case, but we’ll see.
The relief came from the fact that – at least so far – genetics has not proven to equate to destiny. Some may seize upon that statement as indicating that I’m a ‘curebie’. While I don’t disagree with those who are seeking a cure, this is not what I mean. FWIW, the Bear has been autistic for such a formulative period in her life that it has shaped her development, and I believe it will always be a part of her. But autistic thought and outlook to my mind is not the same thing as some of the difficulties associated with autism, and to the extent that these difficulties are not genetically based, they may be open to amelioration.
For those who need an example, the Bear constantly touches objects as she passes them, not in an investigative manner, but in what appears to be an attempt to generate location-related sensory input to be able to understand herself in relation to her surroundings. If so, then this suggests that she has sensory integration issues related to physical self-awareness within her environment, which - if anyone has read my 'ASD as a Developmental Disorder - A Suggested Neurological Underpinning' post – may ultimately result in significant further consequences related to her interoceptive capabilities. If so, then ‘fixing’ this particular SI issue could ultimately lead to the potential enhancement of other neurological capabilities (sorry, but you have to read that post to understand this – it is far too involved to fully explain here). It wouldn’t change who she is, but it could potentially add to her capabilities. And if I’m wrong on this, ‘fixing’ this issue would still enable the Bear to more capably and comfortably understand and maneuver within her environment, which presumably is a goal to which no one would object.
Anyway, I went away with a copy of the tests, and sat down that night to read them in detail. On the cover of the results was an explanation page, and in the space next to ‘Result:’ were the words ‘Normal Female’. This pretty much sums it up for me. The Bear is not neurotypical, and for a while we had some issues accepting this. I'd say that today we are much further along that path. We work hard to help the Bear become the best and most capable Bear that she can be. But along with this is an acceptance of who she is - our adorable and happy little girl. She is our everyday normal daughter.
I’ve also previously written some thoughts here on pre-natal genetic testing, if anyone is interested. But at this point, genetic testing of the Bear was presumably past most of the potential moral hazard issues. As such, I figured, why not? If any issues were to be detected then at least we would know and could plan for them.
So, last summer the Bear and I met with a Doctor who specializes in genetics and apparently ASD too, and went through all of the family history. The Doctor explained what they were looking for - in some cases particular alleles, in other cases duplications or omissions of genetic material – and how the testing would be done, and we agreed to go ahead. Some of the testing was to be done in the U.S., so we also had to fill out a form to get OHIP to cover this out of country work. It was approved, and we could proceed.
We waited until September to get the blood work done, as we wanted to combine it with a couple of other tests (regular stuff – nothing fancy). Let’s just leave it at saying that pinning the Bear down to draw blood is not an easy feat (she is quite strong! And feisty!), so we prefer to do this as infrequently as possible. We managed to get the blood with most limbs still intact (ours, not hers – she was fine), and off went the samples to various locations in Canada and the US for the genetic testing.
Four months after the blood draw the Hospital for Sick Children in Toronto (AKA Sick Kids) had announced another one of those
‘breakthrough autism tests’. We thought that we had probably missed this one, but this test too was performed.
It took several months for all of the results to come back, and last month I went in for a meeting with the Doctor to discuss the results. The test interpretation read:
"Microarray analysis of 622 loci using 1887 BAC clones for the subtelomeres, pericentromeric regions and known genetic syndromes (see attached list) detected no abnormalities in the DNA of this specimen. Thus, this is a normal microarray result showing no alterations of the loci tested."
All tests were negative. The Doctor told us that further research was being conducted, and that we should come back in about five years to try again. I wasn’t surprised at the results, but I was a bit relieved. Future tests may ultimately detect a genetic variation that caused the Bear’s autism, but I would not be surprised if the result instead is the identification of a genetic vulnerability rather than a genetic cause. Personally, I lean to immune/auto-immune causation in her case, but we’ll see.
The relief came from the fact that – at least so far – genetics has not proven to equate to destiny. Some may seize upon that statement as indicating that I’m a ‘curebie’. While I don’t disagree with those who are seeking a cure, this is not what I mean. FWIW, the Bear has been autistic for such a formulative period in her life that it has shaped her development, and I believe it will always be a part of her. But autistic thought and outlook to my mind is not the same thing as some of the difficulties associated with autism, and to the extent that these difficulties are not genetically based, they may be open to amelioration.
For those who need an example, the Bear constantly touches objects as she passes them, not in an investigative manner, but in what appears to be an attempt to generate location-related sensory input to be able to understand herself in relation to her surroundings. If so, then this suggests that she has sensory integration issues related to physical self-awareness within her environment, which - if anyone has read my 'ASD as a Developmental Disorder - A Suggested Neurological Underpinning' post – may ultimately result in significant further consequences related to her interoceptive capabilities. If so, then ‘fixing’ this particular SI issue could ultimately lead to the potential enhancement of other neurological capabilities (sorry, but you have to read that post to understand this – it is far too involved to fully explain here). It wouldn’t change who she is, but it could potentially add to her capabilities. And if I’m wrong on this, ‘fixing’ this issue would still enable the Bear to more capably and comfortably understand and maneuver within her environment, which presumably is a goal to which no one would object.
Anyway, I went away with a copy of the tests, and sat down that night to read them in detail. On the cover of the results was an explanation page, and in the space next to ‘Result:’ were the words ‘Normal Female’. This pretty much sums it up for me. The Bear is not neurotypical, and for a while we had some issues accepting this. I'd say that today we are much further along that path. We work hard to help the Bear become the best and most capable Bear that she can be. But along with this is an acceptance of who she is - our adorable and happy little girl. She is our everyday normal daughter.
Thursday, May 01, 2008
Feeling A Little Optimistic
From my last post, one might conclude that I’m feeling a bit pessimistic these days. Instead, I’m actually feeling a little optimistic. The reason is related to the Bear’s education.
Just to get the point out of the way, if anyone has an issue with IBI, my thoughts on the Bear’s program are here. Read this before you raise points about all the negative IBI practices that I’ve previously stated that our IBI provider does not follow.
Longer term, I’m still more than a little worried about the Bear’s education. The powers that be will probably try to boot her out of her IBI program when she reaches Grade One. IBI support does not automatically expire at this point, but rumour has it that the criteria become more stringent, as the intent is to hand over responsibility to the school boards. I’m also more than a little concerned with the possible direction that the School Board may want to take. They may want to move her to an ASD program in a different school. Our preference is to keep her local and part of the community, but that also depends on the local resources that are available (will there be an EA for the full day? One-on-one or shared?) and whether the educational opportunities will be better at another location. As well, what happens in the summer? Does the school have a program? If not, is funding available for other programs, or do we have to pay?
But for the short term, things are actually looking okay. I just had the regular IEP meeting with the IBI provider, and the Bear is making some progress. This year she rated on ABBLLS-R in nearly half the categories, vs. last year’s assessment, when she did not show up on the grid. She is also showing improvement in self-help skills, responding, some imitation, requesting, gross and fine motor skills, and social interaction. She can also match on identical and non-identical objects, pictures, and colours when she chooses to. So far so good. But the real optimism comes from the progress to date and the goals for the Bear’s communication abilities.
The Bear is non-verbal. She does make a variety of sounds, a couple of which have meaning, but they appear to be more mood related than specific words that are used to communicate with us. Despite the absence of speech, she does a reasonable job of letting us know what she wants, often by taking our hand and walking us to whatever she wants. including walking us over to sit down and play with her. She is also able to make choices when we present her with two or more options, e.g. juice vs. ‘(rice) milk’, or different DVDs to watch.
The Bear had also demonstrated an ability to use PECS to communicate. We used to use this at home, with a few different pictures. We stopped when the Bear destroyed the pictures through twisting, folding, and chewing them. Both JK and IBI were also using a small range of pictures, but with no formal program in place.
I started pressing earlier this year for the Bear to start learning the alphabet and numbers, so that we could start to teach her to read. I also expressed a desire to move towards acquiring a Communications device, so that we could begin to teach her how to communicate vocally/electronically. Unfortunately, you can’t just buy a device and put it in front of her (well you can, but….), or we would have done that long ago. She also needs to know how to use it, which requires some specialized teaching. Our issue was that we no longer had access to an SLP, having slipped between the gap between the 0 – pre-JK years (under the auspices of the local ASD support agency) and Grade One and up (the school board). We discussed it with our IBI provider, but they appeared interested but non-committal at the time, given the issues the Bear appeared to be having with matching (capable but no consistency). For obvious reasons, matching could be considered a pre-requisite for PECS Stage 3 (discriminating between pictures) and above. I knew that the Bear could match, having seen this skill demonstrated regularly, but she also needed to be consistent.
What a difference a couple of months have made. The IBI program altered their teaching slightly, and it turned out that the Bear’s ‘errors’ were in fact non-attempts and getting side-tracked in manipulating the pictures or objects rather than applying them. When motivated, she is quite capable of matching at will. IBI also increased their use of PECS after a bit of a hiatus, and the Bear showed that she was quite capable of communicating this way.
The other difference was Carly Fleischman. For those who have not heard of her, Carly is a 13 year old non-verbal girl with autism who has learned to communicate by typing words into a laptop that the machine then ‘speaks’. Just as importantly, Carly has demonstrated that you can’t judge the potential of autistics only by the capabilities and behaviours that can be readily seen. To my mind her major contribution has been to change perceptions – at least among those who are open minded - of what autistics are potentially capable of, given the right support, environment, and assistance. I have long thought of the Bear as another ‘Carly’ in the making, even before I knew that Carly existed. But Carly’s very public demonstration of the ability of autistics to think, understand, show emotion, and communicate (all of which should have been apparent - or at least not easily dismissed – by those who were paying attention) reinforced both my desire to push harder for a communications strategy for the Bear, and made it much easier to make the case to others – if they weren’t already starting to move in this direction in response to Carly’s example.
The net result is that a major part of the Bear’s learning is now focusing on communications. The IBI school has bought a Talk Board (pictures that ‘speak’ when pressed) to enable them to teach her how to use this. They are also working on strengthening the Bear’s PECS skills, and she is doing quite well. On Tuesday, in over 600 communications with multiple cards requiring discrimination she required only two prompts – both were related to the Bear wanting to turn on a video without first using the PECS card to request this. Given that she never had to use the card in the past, this was understandable, and once she knew the card was required, she adapted to that as well. Since then she has been progressing very quickly, traveling to communicate and communicating with the correct person in changing situations. The next step is to make a PECS binder that she will keep with her in JK and home, as well as at IBI. As this is mastered the Bear will be taught to use the Talk Board, and when she is ready we can transition to other technologies and a keyboard. In the meantime there will also be more emphasis on teaching her the alphabet and other skills to get her ready for this.
JK is also very much in alignment with using PECS. The Bear’s EA has had PECS training in the past, and has asked to visit the IBI school to see how they are using PECS with the Bear, in order to use the same techniques in JK. She is now enthusiastically waiting for the binder to start using it, as are we to use it at home.
Finally, another cause for optimism is how well the Bear is fitting in at school. For a while she was off on her own with the EAs for significant periods of time, duplicating a lot of the work that the IBI program was doing in the morning, and reducing her interaction with the other children in her class. The IBI program head did a site visit to the school, and recommended that the Bear be more fully integrated with the rest of the class, and the teacher and EAs agreed. The Bear is now more involved, and even has a couple of girls who are friendly and interact with her. When she is at the computer many of the other children apparently gravitate over to watch and take an interest in what she is doing. She has been well received by the school as a whole, and when the IBI head did her site visit she was very impressed with how much the rest of the school knew and regarded her – “They just love [the Bear]”. At different times she interacts with children from other grades in various activities, and everyone apparently knows and likes her. This to me is more good news, as one of the goals of having the Bear enrolled in JK was that she would fit in early and be accepted, rather than join the school later and potentially be perceived as an outsider.
So, there appears to be progress, we have a clear direction to follow and alignment among all concerned, and the Bear is already adapting well to the new focus. As such, I am feeling a bit more optimistic these days.
Just to get the point out of the way, if anyone has an issue with IBI, my thoughts on the Bear’s program are here. Read this before you raise points about all the negative IBI practices that I’ve previously stated that our IBI provider does not follow.
Longer term, I’m still more than a little worried about the Bear’s education. The powers that be will probably try to boot her out of her IBI program when she reaches Grade One. IBI support does not automatically expire at this point, but rumour has it that the criteria become more stringent, as the intent is to hand over responsibility to the school boards. I’m also more than a little concerned with the possible direction that the School Board may want to take. They may want to move her to an ASD program in a different school. Our preference is to keep her local and part of the community, but that also depends on the local resources that are available (will there be an EA for the full day? One-on-one or shared?) and whether the educational opportunities will be better at another location. As well, what happens in the summer? Does the school have a program? If not, is funding available for other programs, or do we have to pay?
But for the short term, things are actually looking okay. I just had the regular IEP meeting with the IBI provider, and the Bear is making some progress. This year she rated on ABBLLS-R in nearly half the categories, vs. last year’s assessment, when she did not show up on the grid. She is also showing improvement in self-help skills, responding, some imitation, requesting, gross and fine motor skills, and social interaction. She can also match on identical and non-identical objects, pictures, and colours when she chooses to. So far so good. But the real optimism comes from the progress to date and the goals for the Bear’s communication abilities.
The Bear is non-verbal. She does make a variety of sounds, a couple of which have meaning, but they appear to be more mood related than specific words that are used to communicate with us. Despite the absence of speech, she does a reasonable job of letting us know what she wants, often by taking our hand and walking us to whatever she wants. including walking us over to sit down and play with her. She is also able to make choices when we present her with two or more options, e.g. juice vs. ‘(rice) milk’, or different DVDs to watch.
The Bear had also demonstrated an ability to use PECS to communicate. We used to use this at home, with a few different pictures. We stopped when the Bear destroyed the pictures through twisting, folding, and chewing them. Both JK and IBI were also using a small range of pictures, but with no formal program in place.
I started pressing earlier this year for the Bear to start learning the alphabet and numbers, so that we could start to teach her to read. I also expressed a desire to move towards acquiring a Communications device, so that we could begin to teach her how to communicate vocally/electronically. Unfortunately, you can’t just buy a device and put it in front of her (well you can, but….), or we would have done that long ago. She also needs to know how to use it, which requires some specialized teaching. Our issue was that we no longer had access to an SLP, having slipped between the gap between the 0 – pre-JK years (under the auspices of the local ASD support agency) and Grade One and up (the school board). We discussed it with our IBI provider, but they appeared interested but non-committal at the time, given the issues the Bear appeared to be having with matching (capable but no consistency). For obvious reasons, matching could be considered a pre-requisite for PECS Stage 3 (discriminating between pictures) and above. I knew that the Bear could match, having seen this skill demonstrated regularly, but she also needed to be consistent.
What a difference a couple of months have made. The IBI program altered their teaching slightly, and it turned out that the Bear’s ‘errors’ were in fact non-attempts and getting side-tracked in manipulating the pictures or objects rather than applying them. When motivated, she is quite capable of matching at will. IBI also increased their use of PECS after a bit of a hiatus, and the Bear showed that she was quite capable of communicating this way.
The other difference was Carly Fleischman. For those who have not heard of her, Carly is a 13 year old non-verbal girl with autism who has learned to communicate by typing words into a laptop that the machine then ‘speaks’. Just as importantly, Carly has demonstrated that you can’t judge the potential of autistics only by the capabilities and behaviours that can be readily seen. To my mind her major contribution has been to change perceptions – at least among those who are open minded - of what autistics are potentially capable of, given the right support, environment, and assistance. I have long thought of the Bear as another ‘Carly’ in the making, even before I knew that Carly existed. But Carly’s very public demonstration of the ability of autistics to think, understand, show emotion, and communicate (all of which should have been apparent - or at least not easily dismissed – by those who were paying attention) reinforced both my desire to push harder for a communications strategy for the Bear, and made it much easier to make the case to others – if they weren’t already starting to move in this direction in response to Carly’s example.
The net result is that a major part of the Bear’s learning is now focusing on communications. The IBI school has bought a Talk Board (pictures that ‘speak’ when pressed) to enable them to teach her how to use this. They are also working on strengthening the Bear’s PECS skills, and she is doing quite well. On Tuesday, in over 600 communications with multiple cards requiring discrimination she required only two prompts – both were related to the Bear wanting to turn on a video without first using the PECS card to request this. Given that she never had to use the card in the past, this was understandable, and once she knew the card was required, she adapted to that as well. Since then she has been progressing very quickly, traveling to communicate and communicating with the correct person in changing situations. The next step is to make a PECS binder that she will keep with her in JK and home, as well as at IBI. As this is mastered the Bear will be taught to use the Talk Board, and when she is ready we can transition to other technologies and a keyboard. In the meantime there will also be more emphasis on teaching her the alphabet and other skills to get her ready for this.
JK is also very much in alignment with using PECS. The Bear’s EA has had PECS training in the past, and has asked to visit the IBI school to see how they are using PECS with the Bear, in order to use the same techniques in JK. She is now enthusiastically waiting for the binder to start using it, as are we to use it at home.
Finally, another cause for optimism is how well the Bear is fitting in at school. For a while she was off on her own with the EAs for significant periods of time, duplicating a lot of the work that the IBI program was doing in the morning, and reducing her interaction with the other children in her class. The IBI program head did a site visit to the school, and recommended that the Bear be more fully integrated with the rest of the class, and the teacher and EAs agreed. The Bear is now more involved, and even has a couple of girls who are friendly and interact with her. When she is at the computer many of the other children apparently gravitate over to watch and take an interest in what she is doing. She has been well received by the school as a whole, and when the IBI head did her site visit she was very impressed with how much the rest of the school knew and regarded her – “They just love [the Bear]”. At different times she interacts with children from other grades in various activities, and everyone apparently knows and likes her. This to me is more good news, as one of the goals of having the Bear enrolled in JK was that she would fit in early and be accepted, rather than join the school later and potentially be perceived as an outsider.
So, there appears to be progress, we have a clear direction to follow and alignment among all concerned, and the Bear is already adapting well to the new focus. As such, I am feeling a bit more optimistic these days.
Tuesday, April 08, 2008
So Where Did That Parker Clown Go?
Yes, it has been a while since I last posted: 131 days, to be precise. Unfortunately I’ve been busy, and haven’t been able to find any time to post, although I have a few in my head that I want to write. FWIW, I still consider this blog an ongoing concern, and I miss writing it. I miss the idea of crafting a good post, and while I’ve been waiting for my first one I’ve also enjoyed writing the stuff I’ve posted so far.
The following isn’t about autism, but it does explain my absence.
First, someone at my work decided that I should take on a new project - the same project that I haven’t had time to take on in the past couple of years. That person just happened to convince the company President and COO that this was a good idea, and that was that. Of course, new projects require project charters, which include details like business requirements (why are we doing this?) – too bad no one had any, so I had to make them up. The ironic thing was that there was an ongoing effort to get me out of my day job (which was the result of a past project that I was supposed to hand off – but the people I handed it off to screwed up and it landed back on my plate) to do something that the business really needed. But while no one could find a way to get me out of that role, they could somehow manage to find time for me to do a project for which no one could really answer ‘why are we doing this’?.
Timelines are also important. The part I liked best was when one Department said we need it by Date X. Isn’t it amazing how the amount of work required magically fit the required timelines – oops, not possible. My boss (on the org chart I reported to the Chief Marketing Officer, or CMO, but in reality I reported to the CFO – for the record I’m in neither Marketing nor Finance) kept telling me that the project timelines could reflect the amount of work involved and that he would convince the COO of this. But he seemed to give a slightly different message to the COO. So I wrote up the charter, with the full timelines, and it sat before the Management Board while they took months to approve it. Meanwhile, time was slipping away and the deadline wasn't and I was trying to move the project forward AND do my day job.
Then the owning company fired the COO, CMO, and CFO (surprise!), and their chief representative became the new President and COO. Everyone who reported to the CFO now reported to the COO – except me. That little detail about me reporting in theory to the CMO ensured that I now reported to his replacement, who held the position of head of a combined Marketing and Sales department. Did I mention that this was the person who said we needed the project completed by Date X?
Anyway, on to reason two (I’ll come back to reason one again). During this time, over Chrismas, my FIL died – theoretically of cancer, but in actual fact of starvation. He originally had felt uncomfortable after coming back from vacation nearly two years ago, and went to the doctor. The diagnosis – hepatitis. So he, my MIL and my BIL got their hepatitis shots, and wouldn’t you know it, but the diagnosis changed. Instead, there was a mass on his pancreatic duct (so how the #$%^ did they come up with hepatitis?).
He went in to the hospital to get a stent put in to allow him to eat while they figured out what to do next, and delayed things for a couple of weeks – all the while he couldn’t keep any significant amount of food down. Net result – he lost some weight. Then they decided to open him up and take out the mass. A three hour operation turned into six hours for a ‘whipple procedure’, in which they pretty much rebuilt his upper GI tract. But they thought they had got all of what turned out to be cancer. And guess what – he lost more weight. All through the winter and following summer he continued to slowly lose and gain weight (more loss than gain), and one of the biggest (he was a farm boy growing up – "strong like bull") and most vital people I knew was slowly wasting away. It wasn’t the chemo – he tolerated that very well – but he just couldn’t eat that much (no room and little stomach acid to digest what he could eat). But by the fall he was stable. He went off to Montreal for a big social event, and while there they got the phone call.
The cancer was back, and he was brought in for more chemo. And again he had trouble eating. It turned out that there was a constricting pressure on his ‘new’ GI tract that made it difficult for food to pass through (again). Since he wasn’t able to eat he began to lose weight more quickly.
He was brought into the hospital, supposedly to get a stent put in. He went in on Wednesday night for a Thursday procedure that was delayed. So he had to stay overnight again. And that was when they overdosed him on morphine.
His chart (we found out later) had him down for palliative care, rather than for the stent. And while he was in no pain, and told the nurse not to give him morphine (witnesses in the room clearly heard this) the nurse gave it to him anyway, saying that this way she would not have to come back later that night and give it to him then. She overdosed him, and he almost died. It took the weekend for him to (barely) recover, but he was not in any condition for the surgery for the first couple of days afterward. Meanwhile, he still wasn’t eating, and the most they would give him was a ‘fat pack’ on an IV.
It took over two weeks for the hospital to get round to putting in a stent. They kept dithering, not sure whether to do it or not, waiting for a cat scan, then more dithering. Should we put in a feeding tube? Well, that might enable cancer cells to spread into his stomach. Should we put him on chemo to kill the cancer cells? Well, no, because he wasn’t eating. Should we put in the stent? Well, it might not work and he needed the chemo. Meanwhile, he still wasn’t eating, and they weren’t giving him anything. He was literally starving.
My MIL and I ended up going to the hospital ombudsperson to get things moving, but apparently even that wasn’t enough. He was delayed again by the need for another cat scan (held up by that Chalk River incident), and when they got him in it didn't work because he was still full of barium from the last test (meanwhile the scarce isotopes that could have helped someone else were also wasted). Eventually they put in the stent, but by then he was really weak (remember, he had already been losing weight over the last year), and it didn’t work. He was still starving, and we had to keep insisting that he at least get a ‘fat pack’ IV. When he had this he was perfectly lucid and in no pain (other than from hunger). When they took him off of it he was barely there (probably without enough energy to power his brain).
The hospital called for a family meeting with his 'team' (sic). My SIL flew in from abroad with her 15 yo daughter (my niece), so she was there. My BIL, who was at school out of town, was also there, and I went in place of Momma Bear (she thought I’d have a better idea of what to do, and someone had to be available to look after the Bear). In the meeting they let us know he was at stage four. So why weren’t we told this earlier? My MIL would have taken him down to the Mayo Clinic had she have known, but by then it was too late. Did he want to go home? He murmured yes, but then the staff talked him and my MIL out of it, instead trying to push him into the palliative care wing of the hospital (where there was no space - he never made it), but in the meantime suggesting that they would give him better care than he could get at home. The doctor also told my MIL that if she didn’t like his care then she should get another doctor. This wasn’t the first time he told them this, but this time he told them in front of several hospital staff, as well as the family.
We also argued for IV feeding, to which the hospital grudgingly agreed – for five days! Apparently one’s veins cannot support a large IV for more than about five days (so they couldn’t find another vein?? Does he only have one?). This wasn’t “The Protocol” – and starvation was? – but they reluctantly did this. That night he was on an IV feed. The next day he became fully lucid again, and but didn’t remember the previous day’s meeting (for which he had no 'food').
Meanwhile, conditions got worse at the hospital. No one on the staff looked after him, and my MIL, SIL and BIL ended up doing shifts to make sure there was always someone with him, since the nurses rarely responded to the call button or offered any care. Momma Bear did overnight weekend shifts, as I was working and someone had to be home to meet the Bear out of school. If Momma Bear went down to the hospital she could only be there for a couple of hours at most, otherwise she might not be home in time for the school bus (and missing the bus was VERBOTEN). And we have no one where we live who could look after her as backup.
I won’t go into too much detail about the rest, but conditions were horrible at the hospital. Example – he had a fluid buildup that had to be drained every couple of days. My MIL noticed that one of the doctor’s was doing it differently and called him on it. Too bad. The end result was that he leaked fluid for the next couple of hours and soaked the bed. No one came to change the bed, so the family had to get him up and do it with the clean sheets that weren't provided. Another time they nearly overdosed him again. A nurse came in to give him his morphine and didn’t write it down. Ten minutes later another nurse came in and tried to give it to him again, but my BIL stopped her. The family had to bathe him, as the nurses didn’t. And then there’s the IV line. They finally agreed to put in a PIC (sp)?, which is a line into a major artery (or vein?) so they could give him a proper feeding tube. So they gave him the surgery to put in the PIC (painful and then uncomfortable), and then only rarely gave him a feeding bag. All the while he was still starving.
By mid December my work schedule was relaxing a bit (no boss and no organization to speak of as everyone tried to figure out what was going on with the new organization), so I could give more help looking after the Bear. So I worked at home until noon, then went into the office and came home around 7 PM. Momma Bear would head off to the hospital, come home around 4 AM, and would sleep until noon when the cycle began again. We did this until close to Christmas, when I was home and things relaxed a bit – although Momma Bear still had the same shift, and I took the Bear and pitched in with maintenance and shoveling at my MILs house. I took the Bear over to my mother’s for a very quiet Christmas (we normally spent it with my monther, FIL and MIL, and family), as Momma Bear’s family were in no mood to do anything (and they were all still doing shifts at the hospital). A few days later my FIL died. Did I mention that one of the last acts was for the doctor to prescribe him a suppository for his pain? But no one was there to administer it, so my SIL’s friend (a nurse) had to do it. What kind of place expects you to self-administer your own suppository in your last few hours on your deathbed?
And then there was the family BS that went along with all of this. A friend of mine said “What’s the definition of a dysfunctional family? One with two or more members.” My BIL and SIL both went after Momma Bear for not doing what they considered to be her share. Neither of them had any responsibilities other than for themselves (oh, and for a fifteen year old who could get her own food and hung out with my SIL’s nurse friend’s daughter). Meanwhile, I was still working and we had to tag team to look after the Bear, who requires significantly more care than a toilet trained 15 yo who knows how to get her own food and wipe her own bum (sorry, but I’m a bit peeved). A few minutes after my FIL died, my wife went over to the bed to be with him. My SIL came over and said “He’s dead now. Why are you still here?” My SIL’s nurse friend very quickly dragged my SIL away before Momma Bear could react (good thing, too).
BTW, did I mention that in the past Momma Bear quit her job and looked after my MIL’s mother (her Grandmother) for TEN years, while the rest of the family did close to nothing? The grandmother was a lot of work and had attitude (that's an understatement), and my wife did everything for her (bills, doctors, shopping, cleaning, outings, everything). No one else would help as the grandmother was more than just a bit of a handful. In the last year and a half of her life after we moved out of town my MIL and BIL finally pitched in. But Momma Bear didn’t do her share? Momma Bear also has some health issues of her own and is now quite worn out.
Anyway, back to the office. By the new year the new President and COO started to find out what I could do and what my experience was in my past life (meant not in a Shirley MacLean sense, but in former jobs at other companies), and assigned me to head his pet project. So now I was reporting half of the time to him - unofficially - and the other half to the CM&SO, with two big projects. And wouldn’t it figure that my role on the COO’s project led me into the opposite side of a series of major decisions with the CM&SO. Fun times for all! Eventually (two weeks ago), my reporting relationship landed in one place (the COO). The first project was put on hold (no, it hasn’t vanished - that's what summers are for), and now I only have one big project, plus a new role, plus the CM&SO indicating that things aren’t moving fast enough on work he wants from me, and I’m still responsible for my old role as I’m trying to train up two other people to take it over.
So I’ve been busy, Momma Bear is worn out and needs more support, and I’m only now beginning to find some time to post to my blog. As I said above, I have a few posts in my head that I want to write, and hopefully I can find the time to do so soon. But I’ve been a little busy.
The following isn’t about autism, but it does explain my absence.
First, someone at my work decided that I should take on a new project - the same project that I haven’t had time to take on in the past couple of years. That person just happened to convince the company President and COO that this was a good idea, and that was that. Of course, new projects require project charters, which include details like business requirements (why are we doing this?) – too bad no one had any, so I had to make them up. The ironic thing was that there was an ongoing effort to get me out of my day job (which was the result of a past project that I was supposed to hand off – but the people I handed it off to screwed up and it landed back on my plate) to do something that the business really needed. But while no one could find a way to get me out of that role, they could somehow manage to find time for me to do a project for which no one could really answer ‘why are we doing this’?.
Timelines are also important. The part I liked best was when one Department said we need it by Date X. Isn’t it amazing how the amount of work required magically fit the required timelines – oops, not possible. My boss (on the org chart I reported to the Chief Marketing Officer, or CMO, but in reality I reported to the CFO – for the record I’m in neither Marketing nor Finance) kept telling me that the project timelines could reflect the amount of work involved and that he would convince the COO of this. But he seemed to give a slightly different message to the COO. So I wrote up the charter, with the full timelines, and it sat before the Management Board while they took months to approve it. Meanwhile, time was slipping away and the deadline wasn't and I was trying to move the project forward AND do my day job.
Then the owning company fired the COO, CMO, and CFO (surprise!), and their chief representative became the new President and COO. Everyone who reported to the CFO now reported to the COO – except me. That little detail about me reporting in theory to the CMO ensured that I now reported to his replacement, who held the position of head of a combined Marketing and Sales department. Did I mention that this was the person who said we needed the project completed by Date X?
Anyway, on to reason two (I’ll come back to reason one again). During this time, over Chrismas, my FIL died – theoretically of cancer, but in actual fact of starvation. He originally had felt uncomfortable after coming back from vacation nearly two years ago, and went to the doctor. The diagnosis – hepatitis. So he, my MIL and my BIL got their hepatitis shots, and wouldn’t you know it, but the diagnosis changed. Instead, there was a mass on his pancreatic duct (so how the #$%^ did they come up with hepatitis?).
He went in to the hospital to get a stent put in to allow him to eat while they figured out what to do next, and delayed things for a couple of weeks – all the while he couldn’t keep any significant amount of food down. Net result – he lost some weight. Then they decided to open him up and take out the mass. A three hour operation turned into six hours for a ‘whipple procedure’, in which they pretty much rebuilt his upper GI tract. But they thought they had got all of what turned out to be cancer. And guess what – he lost more weight. All through the winter and following summer he continued to slowly lose and gain weight (more loss than gain), and one of the biggest (he was a farm boy growing up – "strong like bull") and most vital people I knew was slowly wasting away. It wasn’t the chemo – he tolerated that very well – but he just couldn’t eat that much (no room and little stomach acid to digest what he could eat). But by the fall he was stable. He went off to Montreal for a big social event, and while there they got the phone call.
The cancer was back, and he was brought in for more chemo. And again he had trouble eating. It turned out that there was a constricting pressure on his ‘new’ GI tract that made it difficult for food to pass through (again). Since he wasn’t able to eat he began to lose weight more quickly.
He was brought into the hospital, supposedly to get a stent put in. He went in on Wednesday night for a Thursday procedure that was delayed. So he had to stay overnight again. And that was when they overdosed him on morphine.
His chart (we found out later) had him down for palliative care, rather than for the stent. And while he was in no pain, and told the nurse not to give him morphine (witnesses in the room clearly heard this) the nurse gave it to him anyway, saying that this way she would not have to come back later that night and give it to him then. She overdosed him, and he almost died. It took the weekend for him to (barely) recover, but he was not in any condition for the surgery for the first couple of days afterward. Meanwhile, he still wasn’t eating, and the most they would give him was a ‘fat pack’ on an IV.
It took over two weeks for the hospital to get round to putting in a stent. They kept dithering, not sure whether to do it or not, waiting for a cat scan, then more dithering. Should we put in a feeding tube? Well, that might enable cancer cells to spread into his stomach. Should we put him on chemo to kill the cancer cells? Well, no, because he wasn’t eating. Should we put in the stent? Well, it might not work and he needed the chemo. Meanwhile, he still wasn’t eating, and they weren’t giving him anything. He was literally starving.
My MIL and I ended up going to the hospital ombudsperson to get things moving, but apparently even that wasn’t enough. He was delayed again by the need for another cat scan (held up by that Chalk River incident), and when they got him in it didn't work because he was still full of barium from the last test (meanwhile the scarce isotopes that could have helped someone else were also wasted). Eventually they put in the stent, but by then he was really weak (remember, he had already been losing weight over the last year), and it didn’t work. He was still starving, and we had to keep insisting that he at least get a ‘fat pack’ IV. When he had this he was perfectly lucid and in no pain (other than from hunger). When they took him off of it he was barely there (probably without enough energy to power his brain).
The hospital called for a family meeting with his 'team' (sic). My SIL flew in from abroad with her 15 yo daughter (my niece), so she was there. My BIL, who was at school out of town, was also there, and I went in place of Momma Bear (she thought I’d have a better idea of what to do, and someone had to be available to look after the Bear). In the meeting they let us know he was at stage four. So why weren’t we told this earlier? My MIL would have taken him down to the Mayo Clinic had she have known, but by then it was too late. Did he want to go home? He murmured yes, but then the staff talked him and my MIL out of it, instead trying to push him into the palliative care wing of the hospital (where there was no space - he never made it), but in the meantime suggesting that they would give him better care than he could get at home. The doctor also told my MIL that if she didn’t like his care then she should get another doctor. This wasn’t the first time he told them this, but this time he told them in front of several hospital staff, as well as the family.
We also argued for IV feeding, to which the hospital grudgingly agreed – for five days! Apparently one’s veins cannot support a large IV for more than about five days (so they couldn’t find another vein?? Does he only have one?). This wasn’t “The Protocol” – and starvation was? – but they reluctantly did this. That night he was on an IV feed. The next day he became fully lucid again, and but didn’t remember the previous day’s meeting (for which he had no 'food').
Meanwhile, conditions got worse at the hospital. No one on the staff looked after him, and my MIL, SIL and BIL ended up doing shifts to make sure there was always someone with him, since the nurses rarely responded to the call button or offered any care. Momma Bear did overnight weekend shifts, as I was working and someone had to be home to meet the Bear out of school. If Momma Bear went down to the hospital she could only be there for a couple of hours at most, otherwise she might not be home in time for the school bus (and missing the bus was VERBOTEN). And we have no one where we live who could look after her as backup.
I won’t go into too much detail about the rest, but conditions were horrible at the hospital. Example – he had a fluid buildup that had to be drained every couple of days. My MIL noticed that one of the doctor’s was doing it differently and called him on it. Too bad. The end result was that he leaked fluid for the next couple of hours and soaked the bed. No one came to change the bed, so the family had to get him up and do it with the clean sheets that weren't provided. Another time they nearly overdosed him again. A nurse came in to give him his morphine and didn’t write it down. Ten minutes later another nurse came in and tried to give it to him again, but my BIL stopped her. The family had to bathe him, as the nurses didn’t. And then there’s the IV line. They finally agreed to put in a PIC (sp)?, which is a line into a major artery (or vein?) so they could give him a proper feeding tube. So they gave him the surgery to put in the PIC (painful and then uncomfortable), and then only rarely gave him a feeding bag. All the while he was still starving.
By mid December my work schedule was relaxing a bit (no boss and no organization to speak of as everyone tried to figure out what was going on with the new organization), so I could give more help looking after the Bear. So I worked at home until noon, then went into the office and came home around 7 PM. Momma Bear would head off to the hospital, come home around 4 AM, and would sleep until noon when the cycle began again. We did this until close to Christmas, when I was home and things relaxed a bit – although Momma Bear still had the same shift, and I took the Bear and pitched in with maintenance and shoveling at my MILs house. I took the Bear over to my mother’s for a very quiet Christmas (we normally spent it with my monther, FIL and MIL, and family), as Momma Bear’s family were in no mood to do anything (and they were all still doing shifts at the hospital). A few days later my FIL died. Did I mention that one of the last acts was for the doctor to prescribe him a suppository for his pain? But no one was there to administer it, so my SIL’s friend (a nurse) had to do it. What kind of place expects you to self-administer your own suppository in your last few hours on your deathbed?
And then there was the family BS that went along with all of this. A friend of mine said “What’s the definition of a dysfunctional family? One with two or more members.” My BIL and SIL both went after Momma Bear for not doing what they considered to be her share. Neither of them had any responsibilities other than for themselves (oh, and for a fifteen year old who could get her own food and hung out with my SIL’s nurse friend’s daughter). Meanwhile, I was still working and we had to tag team to look after the Bear, who requires significantly more care than a toilet trained 15 yo who knows how to get her own food and wipe her own bum (sorry, but I’m a bit peeved). A few minutes after my FIL died, my wife went over to the bed to be with him. My SIL came over and said “He’s dead now. Why are you still here?” My SIL’s nurse friend very quickly dragged my SIL away before Momma Bear could react (good thing, too).
BTW, did I mention that in the past Momma Bear quit her job and looked after my MIL’s mother (her Grandmother) for TEN years, while the rest of the family did close to nothing? The grandmother was a lot of work and had attitude (that's an understatement), and my wife did everything for her (bills, doctors, shopping, cleaning, outings, everything). No one else would help as the grandmother was more than just a bit of a handful. In the last year and a half of her life after we moved out of town my MIL and BIL finally pitched in. But Momma Bear didn’t do her share? Momma Bear also has some health issues of her own and is now quite worn out.
Anyway, back to the office. By the new year the new President and COO started to find out what I could do and what my experience was in my past life (meant not in a Shirley MacLean sense, but in former jobs at other companies), and assigned me to head his pet project. So now I was reporting half of the time to him - unofficially - and the other half to the CM&SO, with two big projects. And wouldn’t it figure that my role on the COO’s project led me into the opposite side of a series of major decisions with the CM&SO. Fun times for all! Eventually (two weeks ago), my reporting relationship landed in one place (the COO). The first project was put on hold (no, it hasn’t vanished - that's what summers are for), and now I only have one big project, plus a new role, plus the CM&SO indicating that things aren’t moving fast enough on work he wants from me, and I’m still responsible for my old role as I’m trying to train up two other people to take it over.
So I’ve been busy, Momma Bear is worn out and needs more support, and I’m only now beginning to find some time to post to my blog. As I said above, I have a few posts in my head that I want to write, and hopefully I can find the time to do so soon. But I’ve been a little busy.
Thursday, November 29, 2007
Just A Small First (But a Big One for Me)
We used to have a big white cat. Every day when I got home from work he would come to the door to greet me and 'stripe' me (as big, white, shedding cats are prone to do as they rub past your leg). Eventually he got old and difficult to care for, and a few months after the Bear was born, Momma Bear said it was time for him to go. I protested, and amongst other things used this daily greeting as an example (one among many) of something that I would really miss. Momma Bear promised that soon enough the Bear would be greeting me at the door, and that this would also make my day. So off went the cat - to the outlaws, where he lived quite happily for another year or so - and I waited for the day when the Bear would start coming to the door to greet me.
But the Bear, despite being very affectionate with me at other times, never came. She will often give a big smile, and sometimes get up to greet me after IBI, where she's waiting on the couch by the door when I come in. This alone is special - the couch there is a big comfy magnet for her, and she doesn't willingly jump off of it for just anyone - but she never did this at home.
Yesterday I got home from work as usual. Normally I go in, and after getting stuff put away and settled I go and find the Bear and spend some time with her. Not yesterday though.
After bringing in the groceries I started taking my boots off, and Momma Bear called out, as she sometimes does, "[Bear], Daddy's home! Daddy's at the front door." I heard the Bear bouncing on the mini-trampoline (she loves to bounce on it on her butt) in the living room (yes, living room - where do you keep your mini-trampoline?), but then the noise stopped, and I heard the pitter patter of tiny footsteps down the hall. The Bear peeked round the corner, looked at me, gave me a big smile and quickly came over to greet me. I went down on one knee, and she came over and sat on my lap and leaned into me (a 'Bear' hug). This was the first time that she had ever come to greet me at the front door.
I told her how nice it was that she came to see me, thanked her, told her I loved her and missed her all afternoon (I do the shuttle between IBI and Junior Kindergarten, so I see her at lunch), and picked her up for a big hug and a spin. Daddy is a big amusement park full of assorted rides and spins, and the Bear loves all of them.
Hopefully she will come to the door to greet me again soon. But regardless, this first was special, and easily the best greeting I've ever had. I still sometimes miss the cat, but I now have the prospect of other special welcomes to look forward to.
But the Bear, despite being very affectionate with me at other times, never came. She will often give a big smile, and sometimes get up to greet me after IBI, where she's waiting on the couch by the door when I come in. This alone is special - the couch there is a big comfy magnet for her, and she doesn't willingly jump off of it for just anyone - but she never did this at home.
Yesterday I got home from work as usual. Normally I go in, and after getting stuff put away and settled I go and find the Bear and spend some time with her. Not yesterday though.
After bringing in the groceries I started taking my boots off, and Momma Bear called out, as she sometimes does, "[Bear], Daddy's home! Daddy's at the front door." I heard the Bear bouncing on the mini-trampoline (she loves to bounce on it on her butt) in the living room (yes, living room - where do you keep your mini-trampoline?), but then the noise stopped, and I heard the pitter patter of tiny footsteps down the hall. The Bear peeked round the corner, looked at me, gave me a big smile and quickly came over to greet me. I went down on one knee, and she came over and sat on my lap and leaned into me (a 'Bear' hug). This was the first time that she had ever come to greet me at the front door.
I told her how nice it was that she came to see me, thanked her, told her I loved her and missed her all afternoon (I do the shuttle between IBI and Junior Kindergarten, so I see her at lunch), and picked her up for a big hug and a spin. Daddy is a big amusement park full of assorted rides and spins, and the Bear loves all of them.
Hopefully she will come to the door to greet me again soon. But regardless, this first was special, and easily the best greeting I've ever had. I still sometimes miss the cat, but I now have the prospect of other special welcomes to look forward to.
Thursday, November 22, 2007
‘Autistic’ vs. ‘Has Autism’
One of the many points of contention in the world of those touched by autism is the way in which one who has a diagnosis is labeled: ‘autistic’ or ‘has autism’. While I don’t think about this too much, I was watching a movie on Sunday in which someone referred to a child as ‘autistic’, and the parent deliberately corrected the person with the statement ‘has autism’. That started me thinking about the divide.
I tend to use the term ‘autistic’, in part because it is a term that appears to be favoured by those with the diagnosis who have an opinion on the subject – e.g. see Jim Sinclair here. But I’m not particularly fussed by the use of ‘has autism’, and (if anyone cares) I find this description to be not offensive (unless one wants to be offended), but merely incomplete in its descriptiveness.
Not everyone feels this way. A researcher who replied by e-mail to my ‘ASD as a Developmental Disorder - A Suggested Neurological Underpinning’ post (no, I will not say who it was, and I quote this strictly to show another POV, not to challenge the researcher) wrote the following:
"A minor point, but I have always been told that it is impolite to use the word 'autistics' as a noun. I tend to write 'people with autism' or 'autistic children' instead. I realize opinions differ widely on this type of 'political correctness', but many journals now ban the term 'autistics' and I find it grates when I read it."
While I don’t agree (and I wrote back to explain my use of the term and to forward a link to Jim Sinclair’s above-mentioned post), I think I do understand why people might feel this way. Not to link the person above to Jenny McCarthy, but I also recall hearing the other parent who did the road show with her clearly make the distinction between the two terms, favouring ‘has’.
The dividing line between the two terms of reference – the difference between ‘is’ and ‘has’ - seems to be in related in part to one’s view of ‘cause’ and ‘cure’. If one believes that autism is a disorder/disease, and therefore as a negative, then it is presumably something that happens to a person rather than being part of them. As such, it would not define the person (i.e. ‘is’), but is instead an affliction that someone ‘has’, and which may therefore be potentially subject to elimination (i.e. the person ‘does not have’ autism after being cured). After autism has been removed, the person presumably still ‘is’, even though they ‘no longer have’.
A related point is that some use ‘has’ because they want to convey that the autistic person is more than just autistic, such that autism alone does not define them, but is only part of the story. Also, if autism is seen as a negative, then that is a further reason to distance the person from the disorder. ‘Has’ suggests that this negative is not a core part of the person but an add-on that does not define them as much as modify them. It enables the speaker to distance the person from the negative, in that the negative does not define them but instead moves them off course from the person that they truly are (or would be if they were not autistic). I would suggest that many who do not believe in the current possibility of a cure still see autism as such and use the ‘has’ descriptor.
If, conversely, one believes that autism is an inseparable part of a person, it is therefore an ‘is’, and part of their ‘being’, rather than a ‘has’. Many who hold this view are anti-cure, suggesting that a cure would change who the autistic person ‘is’, to the point that the original person would no longer exist. Further, I’d suggest that while those who see autism as an ‘is’ would agree that it brings definite challenges, they would not see it as a negative as much as an ‘other’, a natural variation that has its positives and negatives. As such, one of the fault lines in autism runs along the ‘is’/’has’ divide, not just between cure vs. anti-cure, but also between natural variation and a disorder/disease model.
From my perspective, I’m probably on the wrong side of line. I see autism as a disorder with potentially many causes, but one that occurs in those who have a pre-existing and underlying natural variation that makes them vulnerable to autistic disabilities. My issue as such is not with autism per se, but with autistic disabilities. The distinction is too complex an argument to present here (it is embedded in a fairly complex forty-plus page post here), but in a highly summarized form I would suggest that autism is the result of a different developmental path that is strongly impacted by underlying neurological issues manifested in the anterior cingulate cortex and especially in the anterior insula (AI). There is considerable evidence about the role of the anterior insula in general, and it is in this area of the brain that I would suggest the major autistic sensory integration issues are derived. If this hypothesis is correct, then ‘curing’ autistic AI issues would significantly increase the SI capabilities of autistics and open additional developmental pathways, but this would not immediately change who they are. Instead, it would open other potential future paths that would be equally as authentic and true to the person as their existing developmental pathways, but without compromising existing development. As such, the resulting new capabilities would be additive rather than displacing or superseding the existing set.
Despite the above, I still feel that the ‘is’ term is appropriate. To my mind autism really is both profound and pervasive in its role in the lives of those who qualify for a diagnosis, regardless of whether one ultimately believes in the possibility of a cure. I see the term as being explanatory rather than negative or pejorative, and as such it is nothing to distance my daughter from. If a ‘cure’ is found (from the above, my definition of ‘cure’ – ‘the addition of neurologically-based capabilities’, rather than ‘becoming NT’ - is probably different than that of most people), I would then say that my daughter ‘was autistic’ if as a result the diagnosis no longer applied.
Having said that, I do not feel that using ‘autistic’ indicates or suggests that autism is the sum total of the person. The Bear, for example, has a ‘severe’ diagnosis, and yet does not share several of the characteristics that many expect of autistics (as an example, she has no issues with spontaneity or changes in routine – except perhaps when there is not enough of either). Other autistic children I know also each have characteristics that don’t conform to stereotypical expectations. They each differ widely enough that one of my current expressions is "If you’ve met one autistic, you’ve met one autistic." (as opposed to “you’ve met them all”). In the Bear’s case, autism no more totally defines her or sums up her existence than ‘Canadian’ or ‘female’ do, yet she ‘is’ both of these too.
I find it interesting that people who insist on ‘has autism’ would probably use the terms ‘paraplegic’ and ’quadriplegic’ without a second thought, rather than using ‘has paraplegia’ or ‘has quadriplegia’. To be clear, I am not comparing autism with either of those conditions in any way other than their potentially profound and pervasive impact on those so identified, and I am not suggesting that any of the three terms limits or completely defines the people so identified. Instead, the comparison is intended to highlight the discrepancy in the terminology used in each case. Why would one term be unacceptable while the others are not?
I am comfortable with the term ‘autistic’. If others are not, I believe that I understand why, but I will politely disagree. They are free to do the same.
I tend to use the term ‘autistic’, in part because it is a term that appears to be favoured by those with the diagnosis who have an opinion on the subject – e.g. see Jim Sinclair here. But I’m not particularly fussed by the use of ‘has autism’, and (if anyone cares) I find this description to be not offensive (unless one wants to be offended), but merely incomplete in its descriptiveness.
Not everyone feels this way. A researcher who replied by e-mail to my ‘ASD as a Developmental Disorder - A Suggested Neurological Underpinning’ post (no, I will not say who it was, and I quote this strictly to show another POV, not to challenge the researcher) wrote the following:
"A minor point, but I have always been told that it is impolite to use the word 'autistics' as a noun. I tend to write 'people with autism' or 'autistic children' instead. I realize opinions differ widely on this type of 'political correctness', but many journals now ban the term 'autistics' and I find it grates when I read it."
While I don’t agree (and I wrote back to explain my use of the term and to forward a link to Jim Sinclair’s above-mentioned post), I think I do understand why people might feel this way. Not to link the person above to Jenny McCarthy, but I also recall hearing the other parent who did the road show with her clearly make the distinction between the two terms, favouring ‘has’.
The dividing line between the two terms of reference – the difference between ‘is’ and ‘has’ - seems to be in related in part to one’s view of ‘cause’ and ‘cure’. If one believes that autism is a disorder/disease, and therefore as a negative, then it is presumably something that happens to a person rather than being part of them. As such, it would not define the person (i.e. ‘is’), but is instead an affliction that someone ‘has’, and which may therefore be potentially subject to elimination (i.e. the person ‘does not have’ autism after being cured). After autism has been removed, the person presumably still ‘is’, even though they ‘no longer have’.
A related point is that some use ‘has’ because they want to convey that the autistic person is more than just autistic, such that autism alone does not define them, but is only part of the story. Also, if autism is seen as a negative, then that is a further reason to distance the person from the disorder. ‘Has’ suggests that this negative is not a core part of the person but an add-on that does not define them as much as modify them. It enables the speaker to distance the person from the negative, in that the negative does not define them but instead moves them off course from the person that they truly are (or would be if they were not autistic). I would suggest that many who do not believe in the current possibility of a cure still see autism as such and use the ‘has’ descriptor.
If, conversely, one believes that autism is an inseparable part of a person, it is therefore an ‘is’, and part of their ‘being’, rather than a ‘has’. Many who hold this view are anti-cure, suggesting that a cure would change who the autistic person ‘is’, to the point that the original person would no longer exist. Further, I’d suggest that while those who see autism as an ‘is’ would agree that it brings definite challenges, they would not see it as a negative as much as an ‘other’, a natural variation that has its positives and negatives. As such, one of the fault lines in autism runs along the ‘is’/’has’ divide, not just between cure vs. anti-cure, but also between natural variation and a disorder/disease model.
From my perspective, I’m probably on the wrong side of line. I see autism as a disorder with potentially many causes, but one that occurs in those who have a pre-existing and underlying natural variation that makes them vulnerable to autistic disabilities. My issue as such is not with autism per se, but with autistic disabilities. The distinction is too complex an argument to present here (it is embedded in a fairly complex forty-plus page post here), but in a highly summarized form I would suggest that autism is the result of a different developmental path that is strongly impacted by underlying neurological issues manifested in the anterior cingulate cortex and especially in the anterior insula (AI). There is considerable evidence about the role of the anterior insula in general, and it is in this area of the brain that I would suggest the major autistic sensory integration issues are derived. If this hypothesis is correct, then ‘curing’ autistic AI issues would significantly increase the SI capabilities of autistics and open additional developmental pathways, but this would not immediately change who they are. Instead, it would open other potential future paths that would be equally as authentic and true to the person as their existing developmental pathways, but without compromising existing development. As such, the resulting new capabilities would be additive rather than displacing or superseding the existing set.
Despite the above, I still feel that the ‘is’ term is appropriate. To my mind autism really is both profound and pervasive in its role in the lives of those who qualify for a diagnosis, regardless of whether one ultimately believes in the possibility of a cure. I see the term as being explanatory rather than negative or pejorative, and as such it is nothing to distance my daughter from. If a ‘cure’ is found (from the above, my definition of ‘cure’ – ‘the addition of neurologically-based capabilities’, rather than ‘becoming NT’ - is probably different than that of most people), I would then say that my daughter ‘was autistic’ if as a result the diagnosis no longer applied.
Having said that, I do not feel that using ‘autistic’ indicates or suggests that autism is the sum total of the person. The Bear, for example, has a ‘severe’ diagnosis, and yet does not share several of the characteristics that many expect of autistics (as an example, she has no issues with spontaneity or changes in routine – except perhaps when there is not enough of either). Other autistic children I know also each have characteristics that don’t conform to stereotypical expectations. They each differ widely enough that one of my current expressions is "If you’ve met one autistic, you’ve met one autistic." (as opposed to “you’ve met them all”). In the Bear’s case, autism no more totally defines her or sums up her existence than ‘Canadian’ or ‘female’ do, yet she ‘is’ both of these too.
I find it interesting that people who insist on ‘has autism’ would probably use the terms ‘paraplegic’ and ’quadriplegic’ without a second thought, rather than using ‘has paraplegia’ or ‘has quadriplegia’. To be clear, I am not comparing autism with either of those conditions in any way other than their potentially profound and pervasive impact on those so identified, and I am not suggesting that any of the three terms limits or completely defines the people so identified. Instead, the comparison is intended to highlight the discrepancy in the terminology used in each case. Why would one term be unacceptable while the others are not?
I am comfortable with the term ‘autistic’. If others are not, I believe that I understand why, but I will politely disagree. They are free to do the same.
Call off the Search Parties
Just a quick post to let anyone know who is wondering what happened to Ian that he and his family have been found safe and sound, somewhere in Ontario. Unfortunately Ian has been quite busy with various activities, preoccupations, duties, chores, perseverations, etc. over the past ten weeks (has it really been that long?), but promises to do his best to continue to maintain this blog as a going concern. This is not an abandoned blog (Honestly!). Several posts are currently percolating, but finding the time to complete them is an ongoing issue. Ian may even try at some point to post a picture of the Bear dressed as a giraffe for Halloween (it is much cuter than it sounds) if it is not too late to do so.
For those who were not wondering about Ian’s extended absence, why are you still here reading this?
For those who were not wondering about Ian’s extended absence, why are you still here reading this?
Friday, September 14, 2007
Encouraging Tolerance and Acceptance in Public Schools
(No, this is not the ‘Acceptance’ post that I keep saying I’m going to write. But I have started it…)
I’ve been thinking about tolerance and acceptance for a while now, and with the Bear’s entry into Kindergarten the subject is very top of mind. Recently (at least in ‘Ian time’) Kristina posted What is your dream autism school? over at AutismVox. One of the comments particularly struck me:
"The public school’s sole responsibility is to educate children. It is not the public school’s responsibility to dictate sociological norms, ethical norms, and religious norms. The public schools have repeatedly displayed time and time again that they will never be able to adequately parent a child. The society that expects a public school to parent to the children they teach is always weakened by that expectation."
To which I responded:
"Other than on the last one (religious norms) and softening the word ‘dictate’ (I would suggest something between disseminate and encourage) I would disagree. Part of educating children is teaching them about the rights and responsibilities that come with being part of society. Building ‘good citizens’ has been an implicit - where not explicit - part of the public school agenda since the beginning of universal public education, in the U.S. and much of the world. In the Western world the rise of the nation-state and the introduction of universal public education went hand in hand. This is not the same thing as ‘parenting’.
Teaching tolerance and acceptance of diversity is a legitimate social goal, especially as societies themselves become increasingly diverse. At least in my daughter’s school this is stated as one of the benefits - for the entire student population - of inclusion."
What amazed me in the back and forth that followed was that there should even be any debate about this. (What didn’t surprise me was the typical practice of responding to ‘what I want to say you wrote’ rather than what I actually did write.) Regardless of whether public schools ARE teaching tolerance and acceptance – which is a different, although related issue - do people not feel that teaching tolerance and acceptance of others is one of the school system’s responsibilities?
To those who argue that the school’s responsibility is to educate, do they not feel that social education is also part of this? Children do not sit isolated in cubicles but are part of a classroom and a school, and ultimately of a community and a society. Are schools not responsible – along with parents - for teaching students how to behave, interact, and treat others in that classroom, school, community and society?
To be clear, I'm not arguing against educating autistic children in separate classrooms or separate schools (or private schools), where appropriate, required, or desired by the family. Instead, I am stating what I believe is the responsibility of the public education system to all students and to society.
In the Bear’s first ‘Friday file’ (the school batches up a lot of communication into a folder that is sent home every Friday, to be read and initialed by parents for return on Monday morning) was a pamphlet entitled “Safe and caring schools”. In this the School Board stressed the importance of school safety, and that this is a shared responsibility between the school, the student, and parents. The Board indicated that:
"We work with parents and the community to help children and teens develop social skills and appropriate behaviours as they learn and grow. We teach all children about safety, healthy choices and positive values and behaviour."
Further, the pamphlet indicated that it is the school's responsibility to (among other items):
”- teach positive behaviour and good citizenship"
" - teach acceptance of and respect for others”
and that it is the student’s responsibility to (among other items):
" - be courteous to fellow students and staff"
" - show respect for the rights and feelings of others"
Parents also have the responsibility to look for ways to reinforce the same messages at home.
The School Board further indicated that "We do not tolerate violence, harassment, racism, verbal and physical abuse, bullying, fighting… intimidation… or any other dangerous, detrimental or inappropriate behaviour" and also that "there are clear consequences for inappropriate behaviour". At a minimum, the School Board has at least accepted and taken ownership of this responsibility.
Some might say that this is just a pamphlet, paying lip service to concepts that are quickly forgotten. But at least in the Bear’s school, this appears not to be the case. In various ongoing talks with the principal and the ASD coordinator, they both have specifically indicated that the school takes a very inclusive approach, where possible, and that one of the benefits of this was that of teaching tolerance and acceptance to all of the children. They also indicated that they ‘buddy-up’ special needs children with peers and older children to help them fit in and find support within the wider school environment. The policy is not one of forced inclusion (there are other options available besides mainstreaming, where appropriate), but of accommodation and support within the school and community environment.
My neighbour’s children previously attended the same school (the youngest finished her last year there in June, before moving on to the next school level this September). I had earlier asked them about whether there were any autistic children at the school, how they were treated, etc., and specifically asked about bullying. The younger child was a ‘buddy’ to one of the autistic children, and indicated that the child was an accepted part of the group and was fun to play with. She considered him a friend. She and the rest of her family also indicated that bullying was not tolerated, and that it was not an issue at the school or in the community.
Since the Bear is new to the school, I can’t say how well the school system will ultimately live up to these ideals in her case. But what I can say is that these principles are an accepted part of school policy and appear to be part of the school and community culture. Today when I dropped the Bear off I talked to the EA about how she was doing, and how well she was interacting with the other children. One of my questions was ‘How well are the other children accepting her?’ So far so good. I indicated that I thought it was just as important that the other children learn to accept the Bear as it was for her to interact with them, and the EA strongly indicated her agreement.
In Ontario, we’re now in the middle of a provincial election campaign. One of the big issues is public school funding, and whether it should be extended to religious schools. I’m not going to dive into the issue, but what I would say is that all three major parties are committed to the idea of Ontario schools being a place of social integration. The party supporting the extension of funding to religious schools is discussing the issue at least in part in terms of bringing them into the public system, teaching the standard curriculum and adhering to provincial guidelines. The parties opposed to this reject the move in part as being counter to the objective of integrating various cultures and religions within the public school system. What is interesting is that all parties appear to see schools as a method of integrating various cultures within a multicultural society, not via conformity but through tolerance and acceptance of differences and diversity.
This is not to say that we don’t have problems, or that everything works here. There are major issues connected with public education in this province (including funding), as well as social issues that need to be addressed. But I would suggest that the idea of the school system being an agent of societal integration, with a mandate to encourage tolerance and acceptance, is a very mainstream idea in this province.
I believe that one of the things we need to work towards is ensuring that autistics are ‘just another group’ towards whom tolerance and acceptance is extended, accepting autistics for who they are now and for whom they will become. Regardless of whether one takes a neurodiversity perspective, a ‘cure’ perspective, or is within the great swath of opinion in between, we all have an interest in having society accept autistics, and accept and endorse the right of accommodation where required. This is one of the areas in which presumably the whole community of those touched by autism could agree? For those who take a neurodiversity perspective I’d suggest that this is probably obvious, but even for those pursuing a cure, presumably the rights of autistic children to acceptance and accommodation as autistics should be accepted and respected until their cure is achieved?
Social change can sometimes happen quickly, but some changes take time to permeate through society. The public school system is probably the most universal of all social programs (the Ministry of Transportation / DMV probably comes close, but it would be difficult to teach acceptance of diversity as part of a driving test). If we do not expect – and where necessary, demand – that the school systems take ownership of their responsibility to teach tolerance and acceptance to the next generation, and ingrain this within society - and hold them accountable for doing so - then who instead do we expect to do this?
Maybe Oprah?
Again, I fail to see why this is controversial.
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