Over the past few months I have been receiving the richest education in parenting my autistic son. Where? Twitter. How? By talking to autistic adults. The people who are living and breathing autism. The people who have been brought up and raised by neurotypical parents like me. The people who face the consequences of, what I have now learnt to be, an even more ignorant society than I originally believed existed. And what I have learnt has genuinely upset me.
I’ve always longed to be the absolute best parent to my son. I longed to communicate with him, to see the world from his point of view, to engage with him via his interests. It’s what any parent would want right? When kiddo reached around 18 months old there was no more denying that I wasn’t achieving any of those things. And it was utterly heartbreaking. So I did what again any parent would do. I sought advice. Advice from the “experts”. I went and spoke to someone exactly me, with my view point on life, on how to help a child so far from this “expert’s” experience of everyday existence, that all it did was inform me on how to instruct kiddo to live life as I would expect him to live it. In my immature naivety at this point I obviously followed their instructions and guess what. I got absolutely no where. In fact, my mothering self esteem plummeted to such a low at this point that I had no idea how to even engage my son in a cuddle. I was utterly lost. What was I doing wrong? So again I started looking for people to help me. Only this time I was extremely lucky.
It was indeed another neurotypical person that I found, but this was so so different. This was a lady that had left the NHS, who had stopped delivering national training because she felt the content just wasn’t right. Once again, it was simply instructing parents on how to bring their autistic child into our neurotypical world. There was no half way, there was no teaching parents how to embrace and enjoy their child’s unique view on life. It was another giant neurotypical instruction manual. And this lady fundamentally changed my life as a mother.
The lady in question, Mrs H, had set up independently and was working with families taking them through a course called the Hannen More Than Words course. It’s main aim, to help parents understand how to meaningfully engage with their child on the terms of their beloved son or daughter. Not direct parenting where you as the parent pick up a book and say “ok kiddo, it’s reading time”. But parenting where you watch with adoration as your child picks up an object or toy. You put aside any predetermined ideas of how you “should” play with it (after all I don’t see why Toys R Us should determine how I parent my son) and instead you enter their world, copy their play, play alongside them until they are ready to welcome you into their game. And when they are ready, oh my. If angels could sing and a rainbow land with a pot of gold in my lap, well, that may just about begin to describe the feeling I had the very first time. The very first time my son chose to make a connection with me through play. The very first time I realised my neurotypical parenting manual needed to be thrown at the window. I’m not going to talk anymore about Hannen now, but I throughly recommend any struggling parents to look it up. My beliefs that this program was superior were confirmed only this week when our esteemed sensory therapist presented me with a copy of the text book and said “this is excellent, you can’t just grab your child by the hand and expect him to engage”. Children should be empowered to act upon their own drive, you will get so much more from any activity if you do that.
But my point is here that I was incredibly lucky. For I have come to learn in recent months that neurotypical people who truly understand the world of autism are extremely rare. And more often than not they are simply translators (very good translators at that) who merely explain to us neurotypical tribe why the autistic community act a certain way. But do you know what they can’t tell us? How the autistic community feel. That is a whole new level of understanding that can only come from the horses mouth. And so towards the end of last year I set out on a journey to talk, listen and learn from the autistic community themselves. Because to try and learn about autism any other way is surely a little arrogant is it not? Hands up here, I am throughly guilty of this. I used to think that reading books from neurotypical authors made me an expert. And then the autistic community on twitter hit me like an atomic bomb.
The first thing that struck me was how upset they were as a community. Why? I had no clue but it scared me. If the autistic community were upset now there was a good chance that kiddo may grow up to be upset in the future… I had to find out more, I didn’t want this for my son. Here’s what I have learnt so far:
1. People are autistic. They do not have autism. I was taught by neurotypical people to label the “condition” and not the person. Turns out autistic people hate this. They are autistic. End of. And that’s how I have described it ever since (you may have noticed the change in my blog writing if you read regularly).
2. Many autistic people suffered abuse as children. And I don’t think half of parents are even aware they’re doing it. The forcing of eye contact, the pressure to not stim in public. These are scars that people carry into adulthood. People have been forced to act neurotypical in order to “fit in”.
3. I have been an “ableist” for most of my life. Growing up and for most of my adult life so far I have just assumed that everyone experiences the world the same way I do. Why wouldn’t they? After all, I’m a member of the human race with no disability, I’m white and I’m middle class. How dismally ignorant I have been. Why should everyone be like me? Why should everyone experience the world like me? I’ve always considered myself left wing with no racist, homophonic or sexist views. Yet my ableist approach was so ingrained that it was almost an unconscious belief. I didn’t even know I was doing. And that scares me.
4. A large number of autistic people despise the term “autism warrior mum”. It would seem that I have a very different definition for this term than autistic people do. Many autistic people have experienced the motivation of a “warrior mum” as someone who is determined to “save” them from autism. Personally I thought it was describing mums who never stopped fighting for acceptance. Who never stopped in their bid to gain as much support as they could for their child. Be mindful when using this term people, it doesn’t mean the same to everyone.
These are the most potent lessons I have learned so far. I have been so greatly humbled by reading stories and listening to accounts from autistic people. And most of all I want to say thank you for trusting me with your tales of struggle. For I do not want this for my son. I want to learn from those of you who are now able to verbalise your experiences. And I hope some day kiddo is able to verbalise his and help parents like me.
You want to learn how to parent your autistic child? Talk to autistic people. For they are the true experts.
Thanks for reading,
To the autistic community. I hope I have done justice with this blog. I hope I have correctly represented your views. Thank you for helping me build a better life for my son where he can truly flourish and just be him.