Oh the funny things parents of autistic kids or even Autistics themselves hear from people. People, lovingly guided by their stereotypes or Rain-Man-only knowledge of autism feel as though autism is autism…it looks, acts, feels the same in different people. You see this a lot with people with Down syndrome as well (anyone else notice the non-use/ use of person-first language in these sentences? Given the preferences laid out by the respective communities, both sentences are written correctly. How bout that, huh?).
For autism, a lot of time it centers around the person NOT having autism. That the diagnosis is wrong because they know more than the specialists, the therapists and even the parent. OR they’re just trying to be nice and totally miss the mark.
Here are a few of our favorites. He/She can’t be autistic because…
“She can talk”
“He seems so ‘normal’ ”
“She can do grade level school work”
“He makes eye contact”
“He isn’t like the other autistic kid I met”
“He likes other kids!”
“He doesn’t look autistic”
“He makes jokes. Autistic people don’t know how to joke.”
“She’s not a savant.”
“He doesn’t stim” (Use repetitive movements to self soothe)
“She’s so smart!”
“He loves to cuddle.”
“She understands sarcasm”
“He’s not like the Rain Man at all!”
“He’s empathetic”
“He has friends”
“He plays team sports”
“ALL kids do that!”
“Because he reminds me too much of myself, and there’s no way that I have Autistic proclivities. All my friends hate parties, crowds and clothes, too.”
“She count stack of things by just looking at them”
“She’s married, holds a full time job and is a mother.”
I fully understand that people don’t know what to say when they learn that your child has autism. I can’t imagine what it’s like for autistic adults to explain that they themselves have autism. People want to downplay the symptoms in an effort to offer hope, I’m sure. But what it really does is downplay the experience we’re going through. All people with autism are as different from each other as people without. When a person tells you about their or their child’s diagnosis the best thing you can do is simply to listen and ask questions. If you don’t know a lot about autism, that’s fine. Tell them that. “I’m not very familiar with autism, can I ask you some questions?” Is a welcomed sentence. But even if you’ve said the sentences above before, or even if you’ve said something that made you cringe later, it’s better than the WORST thing you could say: nothing at all.
We parents want to talk about our kids, autistic or not. We’re proud of our kids and what they’ve accomplished- again, autistic or not. Most autistic adults will tell you what their autism does to benefit them. They see it as an important piece of who they are and what makes them unique and wonderful. Autism isn’t a dirty word and it isn’t something we don’t want to talk about.
This is Casey. He’s autistic. It makes for rough times, but it makes for the sweetest times, too. He’s not the Rain Man. He’s not a savant- that we know of- he’s his own person with his own abilities, interests, and feelings. He’s my most empathetic child. I could not love him more.
I got these comments most as we were waiting for our diagnosis and shortly after. Everyone wants so badly to tell you that everything’s okay. I understand the impulse, but it made it harder having to argue with them about it.
I think we heard all of those. Great post!!
I was in the process of writing something similar tonight. I had a friend – another special needs mom, but her child isn’t on the spectrum – tell me that my son seems too HAPPY to be autistic, and that she just wants to hug him when she sees him. Those were her exact words. As though autistic people can’t be happy and cute? The fact that my kid is adorable and smiles does not mean he’s not autistic. There are plenty of beautiful, happy autistic people out there.
And I want to hug my kid all the time. Autistic people are huggable-looking, too.
“ALL kids do that!” I hear this all the time….This is a great post, Lexi. Hits the nail on the head.
Thank you so much for writing this. Glad to know I am not alone with this experience!
I have Aspergers (now called high functioning autism) and ADHD, but ever since I was diagnosed, I’ve been told by other people that I don’t have either one! I’ve heard that I just have low self esteem due to being bullied as a kid (WHY did I get bullied? Probably because of my autism/ADHD behaviors!), that I just have anxiety, that I am just seeking attention, that I am just lazy, that doctors are just telling me I have autism/ADHD in order to trick me into buying medicine, etc. It’s kind of strange that all these people know my brain better than I do!
Thank you. I hate when people make assumptions…especially ignorant ones. I have heard some of what’s on this list and I am sure many parents of children with autism can relate.
hi lexi….yep have had all of these and more….the very best one was from my sister in law who when I told her of our boys diagnosis said “noooo, but hes so good looking!?”…….I silently flipped her the bird and walked away.
Allison x
Beautifully written!
YES YES YES.
Thank you for this! I always love it when my parents continually ask “Will he grow out of it?”…..
Ahh, the “no comment” is the hardest. Never has silence from the people who were supposed to care been so, so loud. I’ve heard a lot of these things but mostly I’ve gotten no response at all and that hurts.
The one I hear all the time is, “But, he’s soooo smart or he doesn’t look like he has Autism” I just want to say….WTH who made you an expert on my Kid?????
Your son is adorable.
And may I ask what some appreciated comments or questions have been?
This is our life right now. We are in the process of having my son dx. He has PDD-NOS. I started telling family and close friends and these are the reactions i am getting.
I recently discovered your blog and read “I’m Jealous of you” over at Scary Mommy.
Broke my heart and made me smile at the same time. It’s crazy because we know and understand that what makes our kids so special is also what makes them stand out and not be included. So wish we could have the former without the latter.
You are an amazing MOM. So glad i found you!!
I just came here via Pinterest (I’m Jealous of You post). I’m always hoping to increase my level of understanding and empathy when it comes to others’ experiences that are unfamiliar to me, so I’m glad to have read a few of your posts now. I know I’ve never said any of the things you’ve listed here (nor would I dream of doing so), but it’s always good to be extra aware and informed. I can relate a tiny bit to the “I’m jealous” post because my kids have multiple food allergies, and it’s sometimes hard to watch other parents who are able to mindlessly hand food to their kids without scrupulous label reading. So I can relate to the feeling of jealousy, but not (I’m guessing) to the extent, or to the specific reasons.
Anyway, thank you for what you’ve shared.
“People want to downplay the symptoms in an effort to offer hope, I’m sure. But what it really does is downplay the experience we’re going through.”
I’m so glad to know another parent feels this way. Sometimes I feel like I’m just being too sensitive, but after hearing nearly ALL of these comments in the 4 years since my son has been diagnosed, sometimes I just want someone to go, “Oh really, so what does that mean for him?” Instead of, “Oh but he’s so high functioning, he doesn’t look autistic, But he can speak!” Or some other lame attempt at trying to make me feel better. Ugh. Thank you for your honesty and for saying what I think so many of us feel. You are freaking awesome and FYI, when I’m having a rough day with it all (like today) I peruse your blog… it makes me feel somewhat like a good person and a good parent again because it helps me to realize that everything I am thinking and feeling, I am not alone in.