Lack of information around autism
Even though there’s a lot of support out there, there are still things that make us, autism parents, cringe. At least, it makes me cringe. Let me preface this by saying that I don’t get upset at these comments. Most of the time, people don’t have bad intentions. Mostly it just shows a lack of information about autism for in the general population. This is why I started this blog, and this is why I’m writing this post now. People are ignorant on the subject and that’s ok. I bet that I would have been the one making those comments four years ago, before I started learning about autism.
What not to say to the parent of an autistic child
1 – He doesn’t look autistic
This is the one comment that comes to my mind first, and it’s the phrase I hear the most. Maybe people think it’s a compliment? It doesn’t feel like one. When people say that, I feel like they’re discounting our struggle with autism. What does autism look like anyway? They must think autism has specific physical characteristics like Down syndrome has but nope, people with autism look just like everybody else. He doesn’t look autistic, yet he can’t talk, he’s in therapy 40 hours a week, and we don’t know if he’ll ever be able to live an independent life. But I agree, he’s gorgeous!
2 – Did you vaccinate him
…Of course. Why? You’re not one of those people who think vaccines cause autism? It’s been proven time and time again, and Andrew Wakefield, the doctor who spread that false information, had his licence revoked as a consequence.
Studies have shown that there is no link between receiving vaccines and developing ASD. Case closed. Some parents of autistic kids do believe that vaccines caused their child to become autistic. I personally choose to believe science and doctors.
3 – He’ll be fine. He’ll grow out of it.
Oh yeah? Do you have a crystal ball? Right now, he’s almost 5, nonverbal, and has the cognitive skills like of a 2 year old. This is one of the hardest thing for me, as the mother of an autistic child: not knowing if Charlie will ever be able to live an independent life. Charlie has severe autism. Kids with high-functioning autism will most likely all be able to live independent lives, but what about a child like Charlie? There’s no way to know. We’re still hoping for a miracle. You don’t outgrow autism and there’s no cure.
4 – He can’t be autistic, my kid does that too
Just because your child does something my autistic child does, it doesn’t mean my kid isn’t autistic. It doesn’t mean that your child is autistic either. An ASD diagnosis is given only if someone meets the criteria in several categories. You can read about it more here. These are all the signs and symptoms of autism Charlie was showing before his second birthday. If your child is doing all of that, it doesn’t mean Charlie isn’t autistic – it probably means your child has autism!
5 – I’ve read that Autism is caused by this or that
This goes hand in hand with #2. I don’t want to hear about another anecdote about what some mom did that caused her child’s autism. (It’s always the mom’s fault, isn’t it??) There’s already so much guilt. I wonder everyday if Charlie is autistic because of me. The day, a legitimate study comes out and tells us 100% that this or that is what cause autism, then yes, I’d be happy to hear it. But there are so many speculative articles out there, and so little comprehensive answers from scientific research. I think it’s even harder for me, having autism myself. I know for a fact that it’s at least partially my fault that Charlie is autistic. No need to add salt to the wound.
6 – I heard this special diet cures autism
Okay, this specific remark makes me a little mad. First of all, we jump for joy when Charlie eats anything remotely healthy. He goes through phases of not eating at all. Not even chicken nuggets, pizza, or fries. Needless to say, you can’t just starve an autistic child in the hope that he’ll be so hungry that he’ll eat your special vegetables or sprouts. Charlie would sooner go hungry than eat anything he doesn’t like. Most importantly, in 2017 there’s absolutely NO CURE for autism. Autism is a lifelong condition that can’t be cured. Sure, symptoms can improve, and that’s why Charlie receives ABA therapy for 40 hours a week. Curing autism? No. Not possible. If you know of someone who has cured autism, chances are they were not autistic in the first place.
Silence is the worse treatment
While all of these comments can be hurtful, what’s hurt me the most over the years are the people who just stopped talking to me. Silence can be so much worse than any of the above statements. I hope you won’t be afraid to talk to the parents of autistic children. If you’re not sure what to say just say that, say that you don’t know what to say but you’re here if they need you and you’d like to learn. Honestly, all I wanted after Charlie was diagnosed was someone to listen to me. Now, I love answering questions and helping other people out. Let me know what you think about this!
Liesbeth2017-12-16 at 5:12 PM
Thank you for writing this. At least someone understands.
Eileen2017-12-20 at 5:26 PM
Thank you for taking the time to read and comment.
Stephanie R2017-12-20 at 2:24 PM
Wow. This is so heartfelt and informative at the same time. I appreciate you writing this.
Lois2017-12-31 at 3:26 PM
My children were born with other difficulties, and comments (eg: “Come to my church, and we’ll pray together for her”) from strangers mostly didn’t help, and often left me speechless, hearing them for the first time. If you say such things in front of them, they will give you a look you know is hurt.
m2018-02-27 at 3:54 PM
I have a little boy with autism prior to having him i didn’t know much about the topic so I’ve had to learn as much as i can while raising him, lots of people said to me that he’ll grow out of it or that he doesn’t look autistic and that all kids do that but when you know that they are wrong it is hurtful and it has made me angry the sad thing is that they believe they are being helpful.
André2019-03-16 at 3:36 AM
40 hours a week??? An 5 year old??? How can you say you are not abusive. This isn’t something you should demand out of an adult much less an child.
Eileen2019-03-20 at 4:44 PM
Wanna give CPS a call? I’m sure they’d love to hear how I’m abusing my child by having him go to therapy everyday.
Markus Alexej Persson2019-05-24 at 6:37 PM
Does your child play Minecraft? heard that’s what causes it
Andrew Nelson2019-05-28 at 12:18 AM
Markus. That is supremely hurtful. I would like you to think about why you posted that. I hope you are doung better. A
Autistic Gurl2022-07-22 at 1:53 AM
Thank u so much for informing me of this! As an autistic person myself, those things are not what I want my parent to hear.