What’s wrong with me?’ The trouble with pathologising Autism 

I’ll start by saying that this is not the Grand Theory of Jeanette or anything but is something I would like to put in the world for consideration and discussion.

I am going to write this from an Autism perspective than than a Disability one but I expect some of what I say here will resonate more broadly.

I just came back from Sydney, where my autistic co-author Dr Emma Goodall and I launched what was both of our fourth published books. The audience asks lots of questions and were keen to know our expertise and thoughts on issues around autism. I talked about something I have never said publicly before but which was been nibbling the edges of my consciousness and autistic identity for a while. Yesterday Emma and I were autistic experts: People who share our knowledge with the world to help people support, respect, understand and relate to other autistics. Looking at myself, my life is quite accomplished for any human being.  I had to overcome all sorts of bigotry, violence and self-hatred and from that I made the life I have now where I win awards and find a spot for almost every piece of writing I want to be published and also where I am fulfilled and mostly quite happy. My question around this is how is that possible if autism is just deficits and problems? If there is something ‘wrong’ with me, how come I’m doing so well? How then are so many other autistics doing great things and living fulfilled lives? Why does a mentoring program like the I CAN Network achieve such amazing results through empowering autistic kids and teens? If we were disordered and broken and wrong how is any of this possible?

Autism does tend to come with some big challenges, and while many of these relate to bigotry and bullying by others, some of them are more from within ourselves, like sensory processing issues and overload and ‘shutdowns’.

What if the difficulties we have due to autism are not in fact related to us being broken, disordered or disabling? What if they are like a different version of what non-autistic people experience as difficulties and stresses such as the angst of teenage crushes or being unable to focus on an idea or topic?

I say this because I see so many autistic people who can manage their challenges and embrace and utilise their great strengths. We often have amazing insights and skills. I spend a lot of my time talking to autistic teens and kids and they have so much going on in terms of sensitivity and thinking that I find it extremely hard to see things the way the DSM 5 diagnostic manual does.  I look at my own life and I hardly see any autistic ‘deficits’. Rather I see my way of experiencing the world and how I have found very effective strategies to manage the challenges I face.

What if the DSM 5 is actually pathologising things which could be seen differently. Do we have a manual for neurotypical disorder which talks about excessive gossiping and taking risks when they are young? I wonder if in the future autism will be a descriptor rather than a diagnosis? What if the world was neuro-inclusive and we are just part of wider human experience with our individual skills and difficulties? Maybe this would take the pathology away from autism. People have being talking for a long time about the great strengths autistic people possess. I actually think the pathology element is probably limiting people’s potential. When you are told from a  young age that you are different, have ‘social issues’ (whatever those are supposed to be. I socialise just fine with autistics and other neurodivergent people). Even in a deficits-based world autistics are achieving and reaching their potential and changing the world in various positive ways. I just wonder if the world switched its view and saw us as a genuinely divergent ‘culture’ of our own that things would be so different for autistic people and those who love, care for, work with and learn from us.

I do not mean to ignore issues that autistic people have, but instead suggest that maybe clinicians and other ‘helpers’ could have a genuine understanding of the needs and experience of autistic people – kids and adults – and help the person address those issues for what they were and not add a big, unnecessary whack of negativity about every other element of that person’s experience.

A couple of years ago I wrote a blog post which was supposed to be light-hearted about changing the  DSM 5 autism diagnostic criteria from deficits to strengths. It remains by far the most viewed and shared of all my blog posts. But maybe it’s time to move beyond tongue-in-cheek and satire to a real vision that a pathology isn’t the best lens through which to view autism. Imagine if instead of taking yourself or your child for a ‘diagnosis’ you enthusiastically worked through the descriptors and when you knew you belonged to the Autistic ‘team’ you celebrated with those you care about? This is definitely me thinking out loud (or out word!) but I think I prefer that world to being told everything you can’t do.

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