This post was originally published on Autistic Family Collective; a now defunct website for an advocacy group I used to work with.
Our life is different to many families, but that there is nothing bad about that difference. When my son was first identified as autistic, I heard a lot of negative words like ‘deficit’ and ‘limited’. Following that, I sought out support from other parents of autistic children, and I was confronted with more negativity. That negativity became overwhelming so I removed myself from those support groups.
But, removing myself from toxic ‘support’ environments didn’t completely solve the problem because it’s bigger than that: It’s everywhere! Articles in mass media rarely reflect my perspective that parenting an autistic child can be fulfilling and enjoyable because they are usually filled with negative commentary about parenting autistic children.
I think that parenting an autistic child can be hard, but I don’t believe it is any harder than parenting any other child. All children are undergoing a process of developing their skills. They’re all still figuring out things and trying to make sense of their world, and that process can cause frustration for them. At times, their frustration makes life hard – for any parent, regardless of their child’s neurology.
It would be easy to blame all of life’s problems on my child’s neurology. Sadly, no one would even question that since he is autistic, and everything that people hear about autism makes them believe that my life must be awful.
My life is not awful though, and because I don’t see it as awful, people question whether I’m truly in touch with reality. I’ve had counselors tell me that I should mourn my child. Why? My son is still very much alive, and he’s exactly the same person he was before he was identified as autistic. I’ve had other parents tell me that I don’t know what they’re going through because I don’t know what it’s like to have a “difficult child”. That may be true – it may be that I can’t relate to them because I don’t see my son as a difficult child. I see him as a young person who is trying to figure out life, and trying to find ways of dealing with a world that shows very little acceptance towards him and us.
I don’t need nor want the pity of others because we’re doing just fine. We’re happy. We’re enjoying life, and we’re enjoying learning how to approach the world together. My life is not harder than anyone else’s. We might do things differently, but we still do things. We might not go out as often as other families, but we’re not isolated. We might not have as much money as other families, but we’re comfortable enough.
I have finally found other parents who share my perspective. Unfortunately, our perspective doesn’t get heard often because the voices that say that living with an autistic child is an unmanageable burden are far, far louder than any ours. They’re louder because they can be monetised. Charities can, and do, present these stories of overwhelming hardship as a way of fundraising. The sad thing about that is that parents of newly identified autistic children hear those stories, and they buy into those stories. Then, they start looking for all the ways that their autistic child has changed their life, and they add to the loudness of the negative voices.
So, parenting an autistic child is hard. It’s hard because of all the negative rhetoric. It’s hard because people want to pity me. It’s hard because most people will only listen to my story if it’s full of woe. But, parenting an autistic child is not hard because my child is autistic.