I’ve been making my way through a book which is a compilation of the life stories of successful autistic adults, written by themselves. The compilation is brought together by Temple Grandin, and is called “Different… Not Less.” Once I complete the book I’ll do a full review, but at this stage I want to write about a particular recurring aspect in the stories, which is already impacting on how I view autism and my son.
These successful adults were typically diagnosed late in life, even though their autism (and associated conditions) were impacting on their lives from childhood. Late diagnosis of these adults is no mystery, considering the huge rise over the past two decades in awareness and recognition of autism, and the changes in autism criteria during that time. I wouldn’t simply say their autism was too mild to allow diagnosis from a younger age; that doesn’t accurately reflect what I’m reading about their childhood experiences, and it does a disservice to the enormous amount of effort they put into making their lives what they have become.
The stories of the impact diagnosis had on them, is interesting in a number of ways. Typically it was that the diagnosis allowed them to better understand themselves and their behaviours. As a “tool” you might say; something of explanatory value both of the past and their present. But it did not (at least in the stories I have read so far) become an identity per se (in the way that I have read many people refer to autism online).
Autism is a useful truth about them, but it doesn’t give them excuses or reason for personal restriction. These adults have been successful because they expected much of themselves and others expected much of them too. They didn’t have preconceived ideas as youths about what jobs they might be suited to because of autism, instead they tried many different jobs – doing well at some, poorly at others – but always learning something new about themselves and the world from even the failures. They didn’t all end up in predictable autism occupations (such as working with computers); they sought out and took opportunities as they arose, and ultimately followed their passions to success.
Something Temple is clearly keen on herself, is the idea that autistic youths not get too caught up in their autism; that they don’t make autism itself their passion. There are, after all, only so many jobs available for autism advocates, and few people who write about their own autism are guaranteed a living from it. Indeed, she has expressed that her own ability to be an advocate and speaker on autism issues, came around secondarily to her passion and success with cattle.
I think there are some important considerations in there, and its slowly changing how I view autism too. I wonder how healthy it is to identify very closely and essentially with a term that is at the mercy of the DSM and ICD scientists; to identify intimately with a word that is still under redefinition. I wonder too about how identifying too closely with “autism” may encourage some to think autism pre-determines what they can do successfully with their lives. That taking it on as an identity would limit a person’s view of who they are and what they might one day be capable of.
I think it might be best then to think of autism as a “tool,” as I mentioned above seen in these adults stories. As a way to better understand themselves and a helpful guide to how to make your way in the world, for example by careful planning and being aware of issues with reading others’ body language. In this way “autism” is a helpful rather than limiting concept. It is a piece of information rather than an identity.
These thoughts are also impacting on how I’d like to talk to my own son about autism, going forward. In the past I have talked to him about autism as a part of who he is, as something that affects his mind – in both good and bad ways. I’m tending now instead to think I shall work towards him seeing autism as a word that helps him to be aware of how best to approach new situations (for instance), and how to encourage success more generally. Instead of – for example – perhaps one day telling him that autism makes it harder to read others’ body language (which it does), and thereby avoid situations where this might be expected of him; I would focus instead on telling him that because autism can make it harder to read others’ body language, he needs to be more aware of others’ body langauge and work harder to understand it. Again, that autism is a helpful piece of information, but is not definitive of who he is or who he could be. It’s an important difference. It’s also making me less inclined to personally refer to someone as “autistic,” preferring instead the phrase “has autism” (but I still wouldn’t go around telling anyone else what term to use for others or themselves in this regard).
Of course accepting autism as an identity doesn’t doom or necessarily limit someone’s self-image; for many it is indeed empowering. I just think there needs to be real caution about how we particularly encourage our children to view autism as an intimate and essential part of themselves, especially at a time when the definition of autism lies in strangers’ hands. The constant of my son – his identity – is more than autism. Autism makes his life harder in a multitude of ways, and easier in some, but who he is and what he will become is ultimately up to him; autism is just along for the ride.
My views on this topic are still evolving. Even though I’ve had my son’s diagnosis for almost four years, I am still – and will probably forever be – learning what this means for him and for me as his mother. I know writing about “autism as identity” tends to invite passionate and sometimes aggressive responses. I only ask that if you respond to this post, you keep in mind that I am still learning and am ever willing to learn; teach me instead of attacking me, if you’d like to make me see things differently.