As my son’s developmental delays and behavioural issues became more obvious, I moved through changes in the way I would typically interact with other parents in public settings.
Prior to the diagnosis I’d deal with his problems in public by keeping a low profile. I’d try to stay out of the way of other mothers and children, so they wouldn’t stare at my son’s unusual behaviours, or try to talk to me. Normally I’m quite happy to have a good chat-chit, but when I had my son with me I had to keep my attention and eyes on him the entire time to try to stop, or deal with, the frequent meltdowns. When he did have a meltdown I’d always take him back home instead of continuing to disturb others. People would never offer to help, they would just stare at my son, and stare at me in a critical way.
When we received the diagnosis I was so relieved for having a way to explain his unusual behaviours, and was so preoccupied with getting my head around what it meant, that I’d openly start conversations with people I’d only just met, about him having Autism. His Autism was my life at the time, what else did I have to talk about? That was when I really started to encounter the prejudices and ignorances that the public has about the condition. Back then though I wasn’t informed or experienced enough to deal with it. People would make comments such as “he doesn’t look like he has Autism” or “that’s caused by vaccinations isn’t it”. More often though people would just say something like “oh” or nod, and move on.
These days I don’t try to hide myself and my son away, nor do I openly tell people my son has Autism. I do my best to let my son be himself, enjoy himself, and not to apologise for or explain his existence to others. When I have a rapport with someone I may eventually mention it, especially if my son’s and my behaviour seems odd. I still come up against unusual comments, such as today at a local playground, where their reply was “but he talks”. Her understanding of Autism was that the Autistic child can’t talk, because she had a relation who had a son with Autism, who didn’t talk. I’m not sure what she expected my reaction to be “oh fancy that, he’s cured!” Or “yeah, I was just making it up”. But I’m used to this now, and I just took the opportunity to inform her.
I told her Autism was a spectrum disorder – from severe to mild. I told her sometimes Autism comes with other conditions too (such as Downs Syndrome) which make it less likely they’ll ever talk because of the combined effect. I could have also explained to her that Autism comes with a wide range of intelligence levels, and the lower the intelligence, the poorer the prognosis, and that my son had often shown hints at a high level of intelligence, but I didn’t want to make her get defensive about her relation’s intellect.
Instead I expanded by saying that two years of speech therapy had advanced his communication skills, that he used to only speak in single words when he was three. Of course that challenges the common conception that Autism is a static condition – the idea that someone can shift up the spectrum with the use of therapies is not widely known, let alone understood, and by some will be seen as evidence that the child was never Autistic to begin with.
I don’t expect everyone to know everything about Autism, and I’m happy to educate those who want to better understand. But there do seem to be an awful lot of misconceptions out there. Autism continues to be a hot topic of public debate, especially because of its link to the anti-vaccination movement, and the growing numbers of diagnoses. It continues to be popular to dismiss it as a fake condition, or at the very least as over-diagnosed – which I shall discuss in a future post. It is part of what you have to adjust to as a parent of these children – you have to become confident and proud and grow a strong back-bone, because the alternative is hiding yourself and your child in the shadows.
I intend to stand in the sun.