Diagnosis, Determinism and the DSM V

Filed Under (Autism and Learning, Autism Spectrum and Diagnosis) by Estee on 09-11-2009

I was sitting in a waiting room recently when I picked up this from the April 2009 issue of Today’s Parent magazine’s article, Is It A Learning Disability by Marcia Kaye. I turned the pages reading about “conceptual and motor problems,” and in the middle of the page was a photo of a drawing.

“They don’t draw, they scribble,” said the caption.

Who are they? I thought. Does she really know who she is referring to?

The they, is the Adam who when he made is first intentional scribble on the page, I jumped happily. Whose “motor problems,” and indeed they are challenges, in holding a pencil or a crayon seemed to be surpassed. At least the first step had been made. You see, I’ve kept every one of Adam’s “scribbles,” his effort rewarding by his marking that later turned to a happy face, a letter, a sun and a tree and one day, a happy face with long hair which he named “mommy,” at the age of six. The theyare people. They are Adam. They are individuals who are challenged but not unintelligent, who continue to progress at their own rate on the exterior, while on the inside, have many ideas and things to share.

And then there is the category of Non-Verbal Learning Disabilities, which I read with great interest. For the Today’s Parent article stated that “this category encompasses non-verbal learning disabilities (NLD’s), which is a controversial area, with possible overlap into Asperger’s syndrome and mental health issues. But the LDAC [Learning Disabilities Association of Canada] considers NLD to be a bona fide learning disability. A child with an NLD may have a great vocabulary, a good memory and an excellent grasp of detail, but miss the bigger picture. He may be a good reader, but a poor comprehender…if you say ‘Oh great, I have to get a root canal!’ they may take you seriously.” It goes on to describe the social awkwardness and anxiety issues that we so often talk about with regards to autism.”

And to to muddy the waters even a little bit more, we have the discussions over DSM V [Diagnostic Statistical Manual] and removing Aspergers or what differentiates individuals along the autism spectrum:

The Neurodevelopmental Disorders (ND) work group’s discussions have focused on three areas:

1) Possible modification of ADHD criteria to allow for co-morbidity of autism and ADHD (currently excluded). The ADHD & Disruptive Behavior Disorders Work Group has agreed to consider this possibility.

2) Discussion of the validity of Rett’s disorder as a separate disorder and inclusion of a new modifier within the Autism Spectrum Disorders (ASD), which might include genetic and medical disorders and other biologically-definable conditions.

3) How to address Pervasive Developmental Disorders – Not Otherwise Specified (PDD-NOS). The individuals currently diagnosed with PDD-NOS may still be described in DSM-V, but the work group will discuss whether they can redefine ASD in such a way that the PDD-NOS diagnosis isn’t necessary, as this diagnosis currently captures a very heterogeneous group of individuals.

The ND Work Group will be seeking additional feedback from advisors and other experts prior to “finalizing” any recommendations.

Questions still under active discussion for ASD include:

1) How to describe the “spectrum” of disorders now known as ASD (e.g., how many domains will define the disorder);

2) What is the specificity of repetitive behaviors in ASD and how might they be better defined;

3) Whether Childhood Disintegrative Disorder (CDD) is a unique and separate disorder, and if so, what are its defining characteristics;

4) Whether autism is a life-long diagnosis or whether it is possible to recover/remit to the point where the diagnosis is no longer applicable;

5) Whether Asperger’s disorder is the same as “high-functioning autism”;

6) How the DSM-V can alert clinicians to common medical comorbidities (including genetic disorders, epilepsy/EEG abnormalities and sleep, or GI problems) and potential biomarkers;

7) How to include consideration of severity and impairment in diagnosis (currently defined as “qualitative impairments”) and how to integrate these with the overall structure of DSM-V; and

8) How/where to discuss cultural influences on diagnosis (e.g., Korean use of reactive attachment disorder rather than ASD to avoid family stigmatization).

What is most poignant to me is the purpose of both the differentiation and the suggestion that the atypicalities are abnormal rather than a way of being in the world. If Adam’s way of obtaining and processing information about his environment and the people around him are respected (as they are in his household and school), then he continues to grow, mature and learn. And while there continues to be little research that truly helps us understand how “severity” has often to do more with outward “functioning” rather than intelligence, I struggle with articles that fail to discuss how society tends to want to categorize and differentiate individuals based on the severity of their learning disability rather than discussing how people with different or atypical learning needs learn and how we can better support them.

When I read the suggestions for broadening autism to emcompass Aspergers and other characteristics in the DSM V, the issue as I see it is not the damaging effects that calling Asperger’s or PDD-NOS or NLD to autism is to the person or family. For I view it as the families’ discomfort in perhaps being associated with autism. I see the issue is a continued determinism about autism and herein lies the problem. Until autism and many issues are no longer viewed as problems to be solved, but rather atypicalities that require our understanding and providing for, we will forever find ourselves spinning on the hamster’s wheel.

H1N1 Vaccine Day

Filed Under (Autism and Vaccines) by Estee on 08-11-2009

Nope. No qualms about it here. When it comes to life or death, or the risk thereof, it’s a no-brainer. Today we line up at our local clinic. Pack the backpack with food, toys, books, lollipops (wasn’t my last post about the dentist…oh boy….)….here we go….

Blind, Autistic Woman Rakes Leaves To Pay For Dental Work.

Filed Under (Uncategorized) by Estee on 06-11-2009

71790316-c984-11de-8940-001cc4c03286.image Heather Stone collects leaves earlier this week at a home where she and some volunteers raked leaves to help Stone raise money to have dental work done. Stone has raised $41 so far toward a $12,000 visit.

When I read this story I thought of Adam. How a month ago we spent another day in the hospital pulling and repairing his teeth, for indeed he, like many autistic folk, need to be sedated during this stressful experience. I am there helping hospital staff deal with Adam and in turn Adam is managing better and better every year as he matures brilliantly. I am becoming an old hat with hospital staff and they in turn seem to appreciate the calmness and information about Adam I can share. That came with time and experience.

Living in Canada, we do not pay for such visits if we have dental insurance. We do not pay for the hospital visits at all, as we are covered in Ontario under OHIP. We parents have to advocate and teach others how to help our autistic children through stressful periods like this. I hope that Heather will be able to raise the amount she needs.

My typewriter

Filed Under (Writing) by Estee on 06-11-2009

A year-and-a-half ago, I had an obsession with typewriters. I bought them first for Adam, thinking that he would find the one with the right feel and sound as he was learning his keyboard. For Adam, he enjoys sound and experiments by tapping onto different objects and surfaces. He studies sound as much as he is in love with letters. Adam’s father purchased a wonderful old Remington for me years ago that Adam enjoyed playing with. So, as I was healing from two surgeries for ovarian cancer in 2008 (I am fine, in case you were wondering), I entertained myself on EBay and bought some old electrics. When I was back on my feet, I began stashing them in various locations where I had planned to write.

Tomorrow, I’m going to write on one. Pretty much everyone understands how writing by pen, on the computer or on a typewriter can lead to different kinds of writing. I write my journals in ink. They feel sensuous and intimate when I write that way. The computer is great for blogging and writing articles, and yes, I’ve written a few chapters on the computer and I tend to type very fast. Yet there are just too many distractions here on my computer — Facebook, Twitter — man, I’m a pro. Yet other than the social aspect of this media, who really cares what song I’m listening to? To use the media wisely is to get out the word about the work we wish to promote.

So tomorrow I will see how writing like writers used to write feels like. The only bug may be that the tape might be out of ink and I’ll have to go hunting for some down on Queen Street.

And, if you are into distractions and procrastinations, here’s another site to distract you NaNoWriMo writers that I found today (while I should have been writing, of course — thanks Vicki Forman). I’ll keep you posted when I figure out how to download it.

Writing Notes No. 1

Filed Under (Writing) by Estee on 06-11-2009

I have a list of writing topics. There they are, line by line, one stacked upon the other awaiting more words in my little red writing book. The book is full enough to make me feel somewhat accomplished. The weight of the paper from its corresponding blue ink feels thick and full and crinkles differently than a crisp, empty page. I love flipping through written pages or read pages as in a book that I’ve broken well into.

There sure are a lot of ideas and words in that book. Like NaNoWriMo, I can claim my 50,000 words and then some. But as lovely as the weight of words feels in my hands, they are not woven together.

Weaving together is the art of writing. I can draw the perfect picture in my mind, and even watch my hand create it, but when it comes down to getting down to it, one just has to keep practicing. It’s never as easy as we believe in our minds, for what’s being created in our minds cannot be expressed as easily when we have to coordinate our bodies. There may be the will to create, even an idea, but the act of doing is much more difficult.

imagesAs a curator of art I was always mortified when some bloke would try to get under my skin and proclaim of a Barnett Newman painting that “I could do that at home.” I suppose some people believe that artists are sometimes pulling “a fast one” on us, but I think it’s a lot more complicated than that. There are a lot of “notes,” run-on sentences, thoughts and other bodies of work before the final product is complete.

If I could sift my writing (as in a Barnett Newman painting) and get it as tight as a few poignant lines on an otherwise empty canvas, that, for me, would be an accomplishment.

November is Novel Writing Month!

Filed Under (Writing) by Estee on 04-11-2009

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It is a pleasant coincidence that November happens to be Novel Writing Month at Nanowrimo and I decided to join (partly to become part of the community again). Nanowrimo requires 50,000 words by November 30th, but it’s the end product I want by next year.

Let the writing begin.

Change

Filed Under (Acceptance, The Joy Of Autism, To Get To The Other Side) by Estee on 04-11-2009

LongestBrigde-hangzhou2I’m changing the name of this blog and bidding farewell to The Joy of Autism. I ran that blog since 2005 and when things changed last year, I felt that my blog had to change with me. As I’ve written above, I’ve got good reason “To Get To The Other Side.” In a minute, a spouse can leave, a child can disappear from their school, another innocent can be robbed of their life too soon. Sadly, there are many tragic stories out there, and it’s important to keep on going.

I don’t believe that all change is for the better, but I believe in inevitable change. I know that we cannot control the child who is born to us, we cannot pick the day we are going to die, and we do not hope for love to leave us. Yet we can control how we deal with our own circumstances and ourselves. We can make our lives better by how we choose to respond to change.

Since before the beginning of The Joy of Autism blog in 2005, I chose to accept autism, not fight it. I chose to accept Adam, not necessarily all the views and therapists who said that he had to change in order to be better — who called his “stims” abnormal and bad and used what I consider difficult, judgmental language and behaviour towards him. Everyday, even though many other voices and opinions are out there, and I hear them, I make a daily choice. And I believe the choice is a healthy one for myself, Adam and the rest of his family.

No, it’s not easy now that I am a single mom for all kinds of reasons. One main reason is that I am human and I fall into that well of fret every now and again that cannot be put at quick ease with the help of a partner — will Adam be able to advocate for himself regularly by device, by speech? Will he be able to tell me if someone bullies him at school, or God forbid, something worse? If I stay strong, can he? Will that be enough? It may become somewhat gratifying in knowing that I have stood up to my fears all on my own, and maybe even a self-delusion that I have not even while in partnership. All I can say is that Nietsche’s “Was mich nicht bringt, macht mich starker, [sorry, no umlaut in this blogger]” famous line better be right. What I know for sure is that Adam keeps me strong enough.

In the spirit of the Eagles song In A New York Minute (see below), I am appreciative for what I have today and know that change will inevitably come again tomorrow. I’m so appreciative to the life that The Joy of Autism took on, the people it brought to Adam and I, and what I learned by doing it which is why it was hard to let it go. If you remember, it reached a wide readership when it was on Blogger, and for unfortunate reasons, it was suddenly taken down and I rebuilt the blog on this site. It has never been the same since.

I will continue to write about autism as we live it, and hopefully will do so more skillfully as a writer who wishes to improve her punch at the craft. Also important, I hope, I’ll be writing about writing as I work on my book, which may be the most exciting part (and probably the most insane) for me. I started it when Adam was two years old and I have not yet finished it. “The events in our lives have no inherent meaning,” says Debbie Ford. “We are the narrators and the ones who give them meaning.” I figure I have a compulsion to write (since grade five) and to give everything in my life meaning (since grade five).

I hope to have some new kind of fun and make some new discoveries along my journey of getting to that “other side,” where-ever that may be on December 31st, 2010. I also like to think that perhaps you, dear and generous reader, may find some of what I have to share a little useful (and entertaining) as I attempt to broaden the view and, gulp, do what I have always wanted to do.

So, farewell to The Joy of Autism blog. No matter “the best of times and the worst of times,” for that’s the given. The joy can remain in the journey.

A Halloween Episode

Filed Under (Joy) by Estee on 01-11-2009

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You must have known this was coming. My post-Halloween cooing over the love of my life. Every year is just a great big new point at which we can re-evaluate with awe how far we’ve come. We are all so interested in measurements of all sorts and I suppose we all take some comfort in it while we can. At the same time many of us despise measures that lead to exclusion and prejudiced acts by others towards us or those we love. But if my photo albums of Adam since birth aren’t some kind of measure, I don’t know what they are. They are the delightful kind.

Holidays like Halloween, New Year’s, birthdays and Xmas are all markation points. When it comes to our kids, we remember Halloweens-gone-past, and we all keep photos of each year’s costumes. Adam is still young enough that I remember his first hand-made bunny costume sewn meticulously by his grandmother. I remember the successful “Alphabet Boy” costume I made him two years ago. I had not-so-meticulously sewn Adam’s favorite letters onto old clothes. Last year, Adam had requested that he be a Cowboy. This year, I was an impatient mother and chose Adam’s costume for him as he likes the word Jack ‘o Latern, so I assumed that my rushed act of choosing his costume would be okay.

At 5:45 p.m. the dressing started. I called Adam into the kitchen and held a mirror so he could see the eyeliner pencil I hurriedly used on his face which he tolerated, but didn’t love — he squeezed his eyes and curled his lips as the pencil ran around them. Yet, he seemed intrigued enough to let me finish by watching his face transform in the mirror. Then, I found an orange pair of track pants, asked him to put them on and then proceeded to squeeze him into the plump orange sphere. He received an orange hat to match with a cute little green stem to top it all off. I took him to the closet mirror where he studied himself a little grumpily. He cinched his face a few times, watching the makeup move with his face and then suddenly turned to me:

“I want to be a cowboy,” he said.

One full-out clear sentence. Remember, my little guy is not fully verbal. He really struggles with communication. Not only was this sentence perfectly articulated, he was also a little pissed off. He clearly did not like his pumpkin costume that I had arrogantly chose for him. And yet, in Adam’s own seven-year-old gracious way, he accepted it. Mama was in a hurry and he was not about to argue much more than shoot towards me a few angry Adam-style eyes (which means even Adam’s anger is sweet). IMG00063

“Let’s go, let’s go Adam,” I said with a dressed-up enthusiasm. It was exactly six o’clock and the sun had just set. Did I say I had to leave in order go to the Giller Prize finalist readings by 7:15?? You see, I wasn’t expecting what was to come. I thought that our trick and treating would last about two homes based on past Halloweens. When Adam was first out a few years ago, he assumed that he could enter every home we approached. And when he could not, he became upset. By his second “active” Halloween as “Alphabet Boy” he really enjoyed staying home and handing out the candies to the other kids. In the Year of the Cowboy he was not so enthused and didn’t want to go to any homes save for an entertaining one up the street — that ONE home in every neighbourhood that’s totally over-the-top awesome.

This year was a different matter. We went out. I taught him how to ring the bell on his own as I slowly stepped a little further and further back each time because Adam didn’t show any resistance at all to approaching the homes in our neighbourhood. I showed him how to hold out his Jack-O-Lantern bucket and say “trick or treat” and “thank you.” I told him to pick the homes with only the pumpkins and decorations at the front. And then he didn’t want to stop. From house to house we went and while I was ecstatic (which begs the question why we parents are so bloody obsessed with our kids enjoying this silly holiday) that he was enjoying himself (ah, that’s why), I kept looking at my watch! Why oh why did I have to go to some event on Halloween!?? Not this Halloween!

But that’s how it always works, doesn’t it? It usually happens when we are simply not expecting it to happen. And thankfully, Adam’s bucket was full by 7:15. Mine, as always because of him, was overflowing.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.