Dear Well-Meaning Acquaintance,
Please stop trying to convince me that my daughter does not have autism. I know that you are trying to give me hope that she is “normal” or “will grow out of it.” But I know that she isn’t, and she won’t, and I’m tired of having to run through all of her symptoms to convince you of her diagnosis.
“But she’s so smart!”
Yes, in some ways she is very smart. Autistic doesn’t mean stupid. At barely 2 years old she can count to 20. She knows the alphabet and can identify letters on command. She can read a few simple words such as “mama.” She knows shapes and colors and animals and is very good at memorization tasks.
She also can’t tell us when she’s hungry. She struggles to say 2 syllable words and can’t form multiple word ideas. She doesn’t understand waiving “hi” or “bye.” She doesn’t understand the words “happy” and “sad.” When you exclaim that she can’t be autistic because she’s smart, you force me to explain all of this to you, and to remind myself of her deficits instead of celebrating her strengths.
“She’s so young, how could you possibly know that at this age?”
Yes, she’s young. She was diagnosed at age 22 months, by a team of 4 professionals who specialize in developmental assessment. Since that time we have gotten opinions from three speech/language pathologists, two pediatricians, one board certified behavior analyst, and one developmental psychologist. Every single one of them agrees: she has autism. We, her parents, also agree with the diagnosis. Recognition of autism at this age is increasingly common, and yes, we’re sure. Your doubt doesn’t give us hope, it gives us fear that people won’t take her needs and diagnosis seriously because she’s “too young.”
“I saw her make eye contact! She engaged with me! She can’t be autistic.”
Yes, she can be. Autism usually comes with significant impairments in social interaction, including eye contact, and our daughter is no exception. Yes, she makes eye contact with adults fairly often, but it’s still significantly less than typical children her age. It’s also a skill we’ve been actively working on. She initiates play interactions with adults. Again, this is a major skill we have built with her and we are very proud that she does this. She does not, however, initiate social interaction or make eye contact with other children. She does not respond to her peers when they speak to her or try to play with her. It’s heartbreaking to watch. Again, in trying to give me hope, this objection instead forces us to explain these deficits rather than rejoice in her progress.
“She seems fine/happy/normal to me.”
She is fine, in her own way. But she does have autism. She seems happy now, in her own world playing. But when we go to change her clothes, or remove her shoes, or if her food touches other food, she’ll melt down. If we touch her food after it’s served, she’ll melt down. If we move a toy from it’s “correct” location, she’ll melt down. If we place her on her chair, she’ll melt down. If we put mittens on her, or a hat, she’ll melt down. I don’t want to have to explain to you all the ways in which she is not fine or normal, I’d rather be able to enjoy the fact that right now, she’s happy.
So what should you say when I tell you that my daughter has autism? You could start with “It’s so great that you got the diagnosis early! You must be a great parent.” We also love to hear “I can tell you’ve been working on her skills, she’s doing great!” You can ask us what kind of treatment she’s getting and what progress we’ve seen. You can ask how we cope with the condition. You can offer support if you want to. Or you can just say “Oh, she has autism? OK.” and leave it at that. Just please do not question the diagnosis, because we’re sure and I shouldn’t have to justify it to you.
The Parents of a Child With Autism
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- Stop Trying to Convince Me My Daughter Doesn’t have Autism - June 23, 2016