“Citing examples of new additions like ‘mild anxiety depression, ‘psychosis risk syndrome,’ and ‘temper dysregulation disorder’…many people previously seen as perfectly healthy could in future be told they are ill….’It’s leaking into normality. It is shrinking the pool of what is normal to a puddle…

Dr. Wykes and colleagues, Felicity Callard, also of Kings Institute of Psychiatry, and Nick Craddock of Cardiff University’s department of psychological medicine and neurology said many in the psychiatric community are worried that the further guidelines are expanded, the more likely it will become that nobody be classed as normal anymore.”

Well, it’s about time. Perhaps ironically, I’m not one for self-help aisles and a belief that we all suffer from some made-up ailment that can be remedied with expensive quackery. At the same time, I also understand that there is a widespread concern that if we simply dilute human differences and challenges we do not address serious  medical and practical needs. In other words, some people fear that a complete distillation of humankind will take away much needed work towards attaining the services, medical attention, and accommodations that we continue to need in order to replace the treacherous world of asylums. This article in The New York Times, cites some of the other concerns specific to the autism diagnostics proposed for the new manual.

What the Globe and Mail article assumes quite simply, however, is that there are only two kinds of people: normal and abnormal. We know that in history that it is this whitewash, this binary, that is the most dangerous because it has  subjugated individuals with differing needs, thinking ability and functioning levels to not only the margins of society, but to maltreatment and exclusion of all kinds.

Until  recently, disabled people have had no rights. Still today, seen as non-persons despite legislation and the ADA, disabled and autistic individuals continue to struggle for their right to have a voice at policy-making tables, and to be accepted and accommodated for their needs while contributing as autistic and disabled people. Not a day goes by that the notion of cures and getting “better” (that is “more normal”), underlies the purpose of teaching autistic people at all, as opposed to teaching them to their strengths and abilities as well as with a regard to the value of autistic contribution.

As a committe works to redefine the characteristics of autism, the questions that the committee ask in the panels are well worth reading.  I cannot help but wonder how getting an autism diagnosis may change for parents and autistic people, and consider that the future could be brighter. In my view, we seem to be asking some of the right questions with regard to the spectrum of autism and the fallacy of the association between intelligence and functioning levels. So I guess I’m saying that as I read the Globe article this morning, I was sort of nodding my head. Yes, there is no normal….that’s right. Why fear that? What is it that we must do and how must we think differently in order to finally obliterate that binary?

It is here that  I have to refer to Wendy Lawson’s book Concepts of Normality: The Autistic And Typical Spectrum (Jessica Kingsley Publishers, 2008). In it she states,

“Currently the debate about ‘what is normal’ is causing some heated exchange; this is not new. In particular the debate concerning autism, disability, neuro-diversity and typicality poses some ongoing challenges. Disability presents itself in a variety of ways, and for most of us living with disability, who we are is normal for us. For many people on the autism spectrum, which is certainly very disability in a world that does not accept, value or accomodate ‘difference,’ being handicapped is an everyday reality…Having a respectful understanding of one another should include accessibility to appropriate resources, support, safe places and sincere appreciation of difference. Anything less is not acceptable.” (Introduction)

Recently, Thomas Armstrong released his book, Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia and Other Brain Differences, (De Capo Press, Cambridge, 2010). In his first chapter “Neurodiversity: A Concept Whose Time Has Come,” he has cleverly quoted Margaret Mead:

“If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities, and so eave a less arbitrary social fabric, one in which each human gift will fall into place.” (from Sex and Temperment in Three Primitive Societies).

Thomas goes on: “In 1952 the first edition of the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association listed one hundred categories of psychiatric illness. By 2000 this number has tripled. We’ve become accustomed as a culture to the idea that significant segments of the population are afflicted with neurologically based disorders such as ‘learning disabilities,’ ‘attention deficit hyperactivity disorder,’ and ‘Aspergers syndrome,’ conditions that were unheard of sixty years ago. Now, even newer disabilities are being considered for the next DSM in 2010, including relational disorder, sexual behaviour disorders, and video game addiction.”

“How did we get here?” Thomas asks. He cites things like a greater knowledge of the human brain and research into the area, a growth of advocacy movements that push for “awareness,” (alas, is it no wonder why most of us shudder at “Autism Awareness Month?). Mostly, the need for the advocacy marketing plan is the way to raise money for things like remedies and therapies. No family wishes to envision their children in asylums and mental hospitals (another topic because they were set up with all of the good intentions we have today for many of our “centres,” but ended up so overpopulated that the patients within them were neglected and abused). While there has been a valid reason for advocacy movements, perhaps an acknowledgement that all humans are interdependent and need different supports (no matter the severity of their handicaps), may be a very welcome change.

While we keep tripping over the question of what is normal, I wonder if we need a supplementary manual that cites abilities, suggestions for inclusion, education, and the like.  Perhpas we need not define handicaps as disorders, but very real challenges and acknowledge them against the social stigma of having any kind of disability. I have to question that if the stigma didn’t exist, would we also be a society that tends towards over-medicalization? For I do acknowledge that heading into a doctor’s office these days one wonders why so many meds are offered so readily for what I feel to be the way in which we respond to life — anti-depressants and meds like Ritalin come to mind.

To me, this need not be a question of what is the right or the wrong way to be human, but how to support all ways in which to be human. A DSM can only do so much. It is up to us to ensure that we cultivate the society that treats and regards each person individually, for although we are united in our lack of normality, we are also unique. It’s a complicated matter indeed, but in the end, all we wish is to be seen and loved…blemishes and all.

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“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:

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.

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