“But he doesn’t look Autistic.”  The phrase that stings the most.

This phrase bothers me so much. I’ve heard it a lot since my son was diagnosed. These five words could have several meanings so I’ve decided to explore each one in hopes to break my emotional ties.

This meaning often insinuates skepticism. It’s as if my concerns and the legitimacy of our doctors were being challenged. We received the diagnosis by a developmental pediatrician while the deliverer of this statement is usually the least knowledgeable person of Autism Spectrum disorders. This would be a great educational opportunity, but I feel immediately defensive. I have to remind myself that I trust myself as a mother and I trust our doctors, and we know our son best.

Even when I provide examples, I receive rebuttals like “Well so-and-so did that and he turned out fine.” It’s so hard to have a conversation after statements like this because I feel like I’m being treated as an over-reactive parent. I don’t bring my son over for family visits or out in public when he’s having a challenging day. They don’t see what I see. All day long in therapy we are working on eye contact and language and eating and self-regulation. They don’t really understand. I have to keep in mind that when other people see him it’s on his good days, which is intentional, and therefore they see a regular little boy.

Maybe nothing is wrong. Every child learns in their own time after all. It’s wonderful to be hopeful and it’s a sweet sentiment to wish the best. Once we received the diagnosis, however, this phrase confirms the impact, the reality of that diagnosis. I wish my son was typical and didn’t have to struggle so much, but that’s not our reality. When I hear this phrase, I’m reminded of the time before we knew for sure, when we had hope that everything would be fine. Moments like these still sting.

This statement could also be taken as a compliment. Based on physical appearances and behavior, he seems like a typical boy his age. This meaning evokes more complicated emotions for me. It’s a blessing that he “looks normal” because he may not be judged by children and strangers upon first glance, and no parent ever wants their children to be judged. I want people to see my son, and not the Autism. He is not Autism.

On the other hand, when he starts stimming or behaving in a non-typical manner, the judgements are so much worse for us because he does look typical. It’s almost as if he would get a pass or immediate acceptance for acting a certain way if Autism had some physical identifying feature. Sometimes I consider putting him in a tee shirt that declares his Autism just so we can get through the day without anyone bothering us.

This phrase also invalidates everything about our lives. When no one is getting any sleep, when my son is having meltdowns, when we constantly cancel plans because he’s already had a challenging day, when we have tons of doctor appointments and therapies, when we’ve spent the day on the floor crying because he didn’t feel good and didn’t have any language to tell me so, when all I can think about is how I wish he could just say “mama”, when I’m scared to death that he’s losing weight because he just can’t eat anything other than a bottle, and when I’m emotionally wrecked all the time, it’s because we are a special needs family.

I hope in time, I become less sensitive and just ignore this phrase. I’ll try to remember the person reciting it, regardless of intention, doesn’t truly understand what ASD is and what it means to our family. But I secretly hope that posts like this become more prevalent to help spread awareness and encourage compassion.

Previously posted at Hudson Valley Parent Magazine.

*If you have any concerns about your child, please discuss with their pediatrician or contact your local school district or Early Intervention center for an evaluation.*