Autism...a parent's journey to embracing diversity

I have been thinking a lot about how my views on autism have evolved and changed over the years. In the early stages of diagnosis for our boys, my view of autism was definitely influenced by the lengthy and extremely stressful diagnostic process. My stance on autism was shaped by diagnostic criteria which focused on impairments and difficulties. Every single appointment (of which there were many), and each report that I received focused on the things our boys found difficult. At no point was I steered in the direction of autistic adults (via books or online), who extol the many positives as a result of being autistic. In that context, I felt a great deal of sadness for my children, sinking into a deep depression. This was made worse by constantly having to focus on difficulties, recounting all the things my boys struggled with, in order to get the help and support we needed. I often think now whilst supporting parents, that how the diagnosis is presented to parents or late diagnosed adults, impacts on how they view autism. Paediatricians and consultants are gatekeepers to support and services, but also can influence the way we approach autism. I know now that my perception was influenced by the medical model of disability, the tendency to see autism as a pathology instead of a different but equally valid way of viewing the world.

So how did my approach change? After reading (anyone who knows me, knows I read a lot!) and seeking the views of autistic adults, I started to realise that many of my children's struggles were caused by society not making the adjustments they needed. For anyone who doesn't know, the social model of disability sees disability as arising from barriers in society, rather than the individual. I studied hard and armed myself with the knowledge I needed to advocate for what adjustments they were entitled to. I started to take a more positive approach to aspects of my children's autism, that I had previously seen from a negative perspective. So, instead of seeing them as having "obsessions or special interests", I now view them as passionate about what they believe in! I talk about the joy my youngest gets when he twirls his blue tac in front of his eyes, rather than describe it as a "repetitive and stereotypical mannerism". Rather than see our oldest as not being able to look at the bigger picture, I am so proud of his focus and attention to detail when learning about politics and history. I feel horrified when I remember that I once believed the myth that autistic individuals struggled with empathy. I now know that neuro-typical people frequently fail to see the autistic point of view. So, who has the problem with empathy then? Our daughter has grown up in a house that encourages flexibility and tolerance of differences. I have lost count of how many people have told me that she is an amazing human!

I am realistic though. As much as I embrace the neuro-diversity movement, there will always be aspects of my boys lives that will be difficult, yes even disabling. Yet again, perceptions here are so important. How we frame disability, is crucial! I don't see disability as a negative, or anything less. I don't believe that we should have to choose between identifying with disability and embracing difference. What is definite though, is that by making the adjustments our boys need, viewing the world from an autistic perspective and an openness to seeing the world differently not only are our boys happier, but guess what so am I. Our whole family is. A family embracing diversity, what can be better than that?