I am exhausted, which is a good reason not to write a post. But I have so many ideas and thoughts floating around in my head tonight, I can feel them slowly coming together, and it helps to organise my thoughts by writing them down, and especially by hearing the opinions and responses of others to those thoughts. So please excuse me if this post is a bit disorganised, and do feel free to help me make sense of this stream-of-consciousness.
I no longer know how to categorise my autistic son. His autism was once so severe that the speech therapist couldn’t say whether he’d ever be able to speak a sentence (and we doubted it too). He self-harmed, other-harmed, destroyed property, screamed, cried, never wanted to try anything new and would have long-lasting anxiety attacks at any effort to do so. He was astoundingly hard to care for, it was like being trapped in a nightmare that had no end. I don’t think I could ever forget the true horror, I don’t think describing it could ever do it justice.
But now. He behaves beautifully much of the time, with a bit of a naughty streak that you might expect of a child anyway. He struggles with language but he uses sentences and can make himself understood most of the time. He likes trying new things, though he does get caught up in requiring routine and predictability. He is becoming the child I thought I’d never see in him. And I’m really not sure how to think of these changes.
I do think he will always be autistic; that the way he perceives and understands the world is via a mind very different from “the norm” specifically because of his autism. And that perhaps the impact of autism on how he sees the world will always be quite strong because he was once so severely affected by all its symptoms from such a very young age. I don’t think of him as a high functioning autistic now, though compared to how he once was, he might be considered that. And I suppose that is the correct focus for me; comparing how he was to how he is now. Figuring out if someone else’s child is more or less autistic than my own increasingly feels like a fool’s game, with no real benefit. All I need to know as his mother, is that my own son is improving.
I dare not call him “mildly autistic” even though that’s closer to the truth now than severely autistic. It has been a while since I did call him severely autistic; I tend to leave off any descriptor other than “classic” autism, which remains accurate. I’m trying to understand that fear over using a gentler describing word, like “mild.” I think it’s partly a worry that people will not treat him with the extra consideration and support he needs otherwise, but that’s probably the old me speaking; the me who had to fight to get him the help he needed and now has. I also think it’s partly because I took so long to understand and come to terms with what it meant to be a mother of a severely autistic child. I know a part of me is also worried that if I get too hopeful or complacent, that I risk utter despair all over again as reality comes crashing down; no point dreaming of rainbows when you’re still facing the storm.
I know his autism affects him in waves; some weeks are good, with challenges everyday but ones I and he can handle. Other weeks, the challenges are so intense that the old hopelessness and worry for his life, pulls me under again. But there is that overall strong trend of improvement that keeps me going through the worst times.
I often wonder and worry about his life ten years, twenty years from now. Will he be able to have a job, a girlfriend, have children? Will he be able to buy his own food, wash his own clothes, drive a car? But I remind myself; he is five. Only five. If he has come this far in the space of two / three years, who knows where he’ll be in even one more year. I don’t know how severe an impact his autism will have on his future, and worrying about it distracts from the here and now, which is where my mind and efforts need to be. The more I focus on helping him right now, at his current level of development, the brighter I can help make his future too.
So yes, I think he will always be autistic as such, but I think the import of that statement will lessen over time for him. He is getting close to the point where I think he will notice and ask about his differences from “normal” children, and I suspect the way I explain his differences to him will be very important to how he views himself and his potential. (I think about the conversation a lot, if anyone has any helpful links about how to explain these things realistically and kindly to their child, I would be grateful for the guidance.)
Which is to say, it will come to matter less whether I see him as lower or higher functioning, and it will matter more how he views himself. I love the idea of that shift; that he will be able to comprehend and consider what autism means, and the most important battle will be his to have. Not because I think my opinion of autism won’t matter or affect him, of course it does. And not because I look forward to his potential struggles to make sense of his differences, of course I don’t. But because he will be capable of having that conversation with me, and his own opinion of himself will take the rightful place as fore-front in my views of autism. What an amazing thought; to know what he thinks of autism someday.
The very idea just leaves me breathless.