"My son will never hear that he has autism from me. I would never tell his teachers, either, as they would treat him differently."If someone said this to me directly, I think my response would be something along the lines of, "I'd sure as fuck hope they would!"
This is one aspect of the "I don't want him labeled" parental impulse, which is pretty seriously problematic. I've written elsewhere about why a diagnosis is helpful, but I just don't understand parents who have a diagnosis for their kids, but won't seek any accommodations as a result.
Now, to be fair, I was completely in this camp immediately after Flynn's diagnosis, without really understanding why. At that point, I couldn't imagine disclosing his ASD to his teachers: would they still challenge him? Would they try to shunt him off to a different classroom? What if his peers found out? And what would he think when he learned of his own diagnosis? Would he hate himself and his differences?
It was all new and unfamiliar, and I had no idea how to navigate these issues.
I had also completely missed the point of getting an autism diagnosis in the first place: to understand the source of your child's non-typical behaviors and to get them any accommodations they need.
Here's what I wish someone would have explained to me:
- His teachers already know. Unless this is literally their first year teaching (and sometimes even then), they realize that your kid is different, and they've probably handled his or her particular flavor of difference on multiple occasions. As an example, the director of special ed at Flynn's first public school worked with him precisely twice before recommending a neuro-psych evaluation. She never said autism to us, but she read the tea leaves pretty quickly and accurately.
- Your kid will never be challenged if they can't focus. If the classroom is too loud, the lights are too bright, they need to move but are constantly being told to sit still, or if unexpected transitions are triggering meltdowns, they aren't learning. Without accommodations, typical classrooms can be nightmares for our kids. Use the diagnosis to get them what they need, so they can learn. If they are already mainstreamed, you have a say in any change of placement the school might propose. But if that is honestly your primary fear, ask yourself why a special ed classroom is so frightening to you. Would you consider the change if you knew he or she would learn the most there? For some kids it will be the best placement, and that's okay.
- Your child's peers already know (or are starting to understand) that your kid is different. Denying that fact won't help her make friends, and if you don't get your kid the social skills help she deserves, she'll be floundering on her own. I don't think she'll thank you for that.
- Finally, you should tell your kids they have autism. Acceptance starts at home, and if you're so scared of their diagnosis that you can't even share it with them, you haven't really come to terms with it yourself. If you don't confront and conquer your own shame and fear, you can't help but transfer it to your kids.
- There are plenty of recently-diagnosed adults who are excited to learn the reason why they felt as though they never fit in. In the article above, Lydia (who I know a tiny, tiny bit through the interwebs - before she was famous!), makes a really great point about the power of a diagnosis. "I never had cause to think I was any different than anyone else, and so with every new failure, I had to conclude I was at fault. . . . When I got my diagnosis, I started to let go of my need to ‘just be NORMAL!’”
One of the great things I've seen developing over the past 10 or 15 years in this country, is the idea that everyone should just be able to be themselves. The progress we have seen in the gay rights movement has so many positive corollaries, and the parallels with the neurodiversity movement are obvious. We owe it to our kids to be accepting of their diagnosis and to push society towards accepting their differences. Every kid on the spectrum has value, and advocating for them means helping them own their diagnosis and their needs.