I still remember the moment I realised my son was Autistic. We were walking down a leafy, tree-lined street and my son asked me,
“Mummy, how can you tell what people are feeling?”
As I explained how I knew based on how people’s faces and bodies moved, I watched my son’s expression – it was shocked surprise. The idea that most people could just tell by looking at each other came as utterly mind-bending. It was like Valentine Michael Smith from ‘Stranger in a Strange Land‘ learning about the alien customs of Earthlings that he resembled, but did not grok.
That conversation changed everything.
You see, when looking from the outside, it was hard to tell what behaviours of my son’s were Autistic, what were part of being profoundly gifted, and what were due to his other disabilities. He does things that clinicians said was not possible with Autism. But they and I were very wrong.
This was one of those, “You know nothing Jon Snow” moments. Yeah, we’ve had a few of those over the years.
Medical Evaluation Takes Time and Energy
So we did what so many other families have done – we did the full evaluation with half-a-dozen specialists. It was not pleasant – particularly for my son. It was hard for him to be faced with people who looked at him and didn’t see a person. Who just saw ‘less’. Though that didn’t become clear to my hubbie and I until we held the report in our hands.
Hearing their response, and reading that report made me cry. Part of that, I know now was shock; our son’s labels doubled over-night and those additions to Autism? They were a complete surprise. But a large part of it was the concerted attempt (or so it felt at the time), to undermine every decision we had ever made for our children.
Is Fitting In More Important?
Over time, the one that stood out – and still makes me occasionally very cross – was the idea that what my son loved was not important. That letting him follow his heart, and not putting him in situations where his spirit would be crushed, was less important than learning how to ‘fit in’.
The other thing that puzzled me (and still does) was the expectation of failure – my son would ‘never do things like attend university’ (even if he wanted to do so). It was not that it would be difficult, and that he would need adaptations, a different path and a set of supports. It was, from the sad looks on the therapists’ faces, impossible.
The fact that they said this, not just to me, but to my, (as he had told them), self-identified Autistic hubbie – who has two degrees and a Masters – was deeply bizarre. The therapist talked about how working on social deficits was more important than following his interests, but my poor brain went, “But aren’t the two linked?”
Find Autistics That Get You
Finding people that ‘get’ you was important for not just my kids – but for me and my hubbie too. So with the therapists advice ringing in our ears, we did what seemed completely natural for us – we talked to our Autistic friends.
Disability is Not Wrong – Talk About It
When we talk to both our children now (my daughter has a number of disabilities too – but while far from neurotypical, she’s not Autistic), we are able to not just talk about their challenges but about how other people also have the same challenges, and how they managed to find ways to do what they wanted or needed to do. Even if it was not exactly the common way.
The idea that people would feel sorry for him for being Autistic is something (thankfully) my son thinks is deeply bizarre, and a little amusing. The idea that he or children like him are not in control of their own life, and that children could be forced to do things they find traumatic stirs the social justice warrior in him. My son is one of the most compassionate people I know, and he wants to help – even if it means giving me permission to tell his story.
I have no idea whether what I am doing is the ‘right’ thing to do. I probably never will. But I have had to work through my fears and realise that they do not help. As my wonderfully logical son would put it, “Making a decision that way is just silly”.
Therapists Only See The Start of the Autism Journey
It has taken me a long time to understand why the therapists framed things the way they did. Part of the reason is so obvious, it’s kind of heartbreaking. These are the therapists and specialists that see only the start of the journey. They see the challenges. They never see the adults these children become – or sadly, from my hubbies experience – nor listen to the Autistic adults they meet.
I know, now, that they were coming from a place of compassion. They saw my optimism as denying challenges, and denying the serious obstacles ahead for a child whose differences are not supported in a world that expects everyone to act and think in a particular way.
Optimism Is Not About Denying Challenges
But there is a difference between an optimism based on a lack of understanding, and the optimism of knowing there are always options and there are many ways to reach a goal.
It’s like learning to tie shoes: some kids just figure it out; others need a bit of help; others need a lot of help; some kids will never tie their shoes. Now, I could say that this is a real problem and force my kids to endlessly practice tying their shoes ad infinitum. (And trust me, I have gone down this path). Or I can acknowledge that not tying laces doesn’t really stop people wearing shoes – and invest in Velcro’d shoes, or magnetic or elastic laces.
Maybe it’s the DIYer in me, maybe it’s the can-do attitude my mum instilled in me growing up, but I have found that if a basic thing is seen as a fundamental skill or idea, it is often worthwhile to look at the bigger picture and the longer-term goal. Because sometimes, it’s not actually fundamental – just usual.
Why do we insist on kids tying their laces? So that they can put on their own shoes.
Why do we need children to read? So that they can find their own knowledge.
Why do people go to university? To learn ideas that are difficult and specialised.
Why force Autistic kids to mimic NT people? So that they can learn how to make friends and fit in.
Decouple Skills From Traditional Ways
Decoupling the skills needed from the usual way things are done is something that I now do almost instinctively. It’s not optimism; it is not delusion based on a lack of understanding.
It’s practical – it’s not glossy, happy or <fill in slightly dismissive phrase here>. Some things are hard. Some things are fecking hard. Some things are fecking hard and not immediately necessary. Some things need to be done, but not always in the usual expected way. Despair, fear, or dismissing things as impossible because they are not usual doesn’t really help much. The fear isn’t helpful when we push through, problem solve and succeed. The fear isn’t helpful when we push through, problem solve and fail.
Surround Yourself With People Who Think Differently
Being surrounded by people who see things from a different perspective opens up my world. And what seems impossible from one point of view, becomes an irresistible challenge from another; these days, I expect to see the gleam in my hubbies eyes if anyone declares a thing impossible or undo-able.
My life is enriched by understanding that I can’t know everything. Every day I embark on a journey with these amazing ‘Strangers in a Strange Land’, as they do with me. All of us bumbling and fumbling to understand each other; all of us having to learn how these Aliens we love understand the world.
Don’t Hold On To Unhelpful Emotions
I don’t need to hold on to my guilt at not recognising all the differences in my son’s thinking. Or hold on to the anger at therapists who were doing the best that they knew how – even if their advice was deeply unhelpful. I don’t need to hold on to the fear that I’m about to get it all wrong and everything will end in disaster.
After all, as my Aliens would comment, that’s not going to help anyone. Instead we will do what we always do. We will seek to learn, we will consult, and then we’ll DIY a way to where we need to be. One fecking hard step at a time. Because we have seen the possible and the impossible, and discerning which is which is often just a matter of perspective.