This post carries a Trigger Warning for mention of neglect and abuse of a disabled person.
This is an interview by Ally Grace, asking questions of her partner, Bart. They are (neurodivergent) parents to four autistic children.
Can you remember the first time you heard of autism? What were your thoughts on it?
No, I don’t remember the first time, but I remember my first impressions. Mainly it was confusion, and trying to understand it I guess. I remember the early times was about the kids. I was mostly trying to work out how it would change things, what it meant for us and our family. And about you (directed at Ally), wondering if it would change anything, and if it would – in what way that would be.
Do you recall early worries/concerns/fears, about autism and its place in your life?
I remember (before I understood it a bit better) having a fear, thinking that my life was going to become similar to my experiences as a teenager, when I was responsible for a lot of the care of my brother who has various support needs. But there were discriminatory thoughts still tied to my thinking about disability then.
So, you think you had a skewed attitude toward disability? Did this come from your family as a young person, with having grown up with a disabled family member?
Can you describe some of those attitudes that you were around whilst growing up?
The attitude was that it was a really hard life, like that it takes over your life.
Do you mean that family problems were blamed on him?
Yes, it was framed as being because of him. It was the way things were worded when I was growing up.
My mum’s comments and ideas that he would be better off dead, increased more and more the closer he got to adolescence. The attitude was because he was moving toward adulthood and was not living independently, and wouldn’t be. My mum tried to explain his life as being for a wider purpose for the rest of us, to “bring us closer together”. Not because he just deserved to be alive and have a life.
From the time I was about 12, I was taking care of my brother because my parents weren’t around to do that. They had lots of problems.
How did your thinking on disability develop beyond that?
Well, at first I couldn’t understand how he could enjoy anything. Not because he was disabled on its own, but because he had needs that my parents weren’t meeting. He didn’t seem like he enjoyed things. I didn’t understand how his life could become enjoyable, it seemed like nothing good or fun ever happened for him. He was in a home with parents who didn’t care for him properly.
I know now, that this environment for him was what was the problem. He wasn’t being given opportunities for things like the rest of us kids got. I don’t know at what time I realised that, but I came to understand that it wasn’t because he was disabled that his life was difficult – but because he was disabled and then not given the opportunities to enjoy life. The other kids in the family were looked after better and given better opportunities.
You have said before that there was an attitude that he would be ‘better off dead’? How do you feel about that attitude now?
I don’t think that it’s a good view to have. I can’t put it into words well. It shits me, really. And in specific terms about my brother, I feel like it was cop-out from my mum. She couldn’t be bothered meeting his needs and so touted this solution of death to make it seem like this was the only solution.
That seems like a lot of background to bring to parenthood! Especially knowing that your children are disabled.
Yes. You don’t know even half of it!
So, your reactions to autism…
I was scared. I had fear.
How did those feelings change over time?
Well, I still don’t understand everything.
I’m also still not politically correct and up-to-date with everything I should or shouldn’t say, but I don’t mean to be derogatory or rude. I just have things to learn still, autistic stuff. That intersects with thoughts I have inside about parenting, like thinking ‘harden up’ because that’s how I was parented. I still have instinctual negative reactions to things the kids do, and I often want to butt in and control like the annoying bullshit that was done to me as a kid. It’s hard to stop myself and do it differently. But I don’t have any feelings of wanting to hit my kids, as was done to me. That’s an easy one.
How do feel about people thinking something has gone wrong for kids like yours/ours? Like, the view that being disabled is inherently wrong?
It used to be offensive to me. Now I know it’s just ignorance, I guess. I try to just shrug it off, and then explain my views. It’s just a different way to parent, we need to do life differently.
You recently had a new baby born into the family. What are your thoughts on her potential neurodivergence?
I’m not fussed really. She’ll probably be autistic.
Do you have any advice for other parents of autistic children?
This is just who your kids are.
I know that it’s me, not them (my kids), who need work. When I get aggravated, it’s something for me to work on. If I get annoyed and see a problem as something that is their doing, or they make me angry – in hindsight, I know it’s me to blame. So my advice is, sort out your own issues as soon as you can.
Thank you for your time.