There is a video on You Tube, made by some parents of autistic children, that starts by showing autistic adults talking at a congressional hearing.
The tone sounds friendly but the intention is dismissive. The video says that the autistics shown are not “real autistics” because they can speak and they are successful.
I already wrote about these disrespectful assumptions. But the rest of the video is even worse.
It shows children screaming, in pain, having meltdowns and seizures, refusing to eat. A woman’s voice claims that parents “live with autism everyday” and “This is Autism”.
Then, this:
“We have dreams for our children”
“to live free from pain”
“no seizures”
“for them to be able to feed themselves, use the toilet, control their outbursts, think coherently”
“to speak”
I ask:
Which parent does not have dreams for their children? This is not autism privilege, this is parenting.
Pain comes in different ways, to all people. This is not autism, this is life.
Seizures are bad, but they are not autism.
Motor coordination is not autism either.
Many people are, or will be, incontinent. This is not autism. This could be anything.
Some autistics have meltdowns and there is always a reason. Outburst is not autism. Anyone can have one.
How can a parent say that a child cannot have a coherent thought if the parent can’t understand the difference between communication and speech?
Some people can experience the parts of autism that can be sometimes painful and uncomfortable but this is not all autism is. Finding better services and solutions for the discomfort is a good goal that we all support.
Finding a cure for epilepsy is dream and a goal I support.
I am Autistic. I cannot eat by myself a lot of the time. I self-advocate and I am happy.
I am Autistic. I have seizures almost every day. I self-advocate and I am happy.
I am Autistic and I used to have loud meltdowns. Sometimes I bite my hands. Sometimes I hit my legs. I self-advocate and I am happy.
I am Autistic. Some nights I have very little sleep or no sleep at all. I self-advocate and I am happy.
I am Autistic. I need a lot of support but I found my independence. I self-advocate and I am happy.
I am Autistic. I have dreams for myself.
I think.
I communicate, without speech. I self-advocate and I am happy.
I am Autistic. Sometimes I am complicated. I self-advocate and I am happy.
The video shows deficits and that is not autism.
Autism is good, bad, complicated, delightful.
We autistics grow, we change, we learn, we get stuck.
We are happy, sad, angry, lovely.
That video is not autism.
Autism is life.
I know. I live it every day.
And I am happy.
I’m also a parent of a child who “isn’t very autistic” and therefore often not acknowledged as autistic. Thank you for writing this. My goal as a parent is to advocate on my son’s behalf and I hope in time he can advocate as you are doing!
Powerful!
Thanks Amy. I parent one of those “not autistic because they can talk” children. She does not have epilepsy – but I did at her age. I understand the negative value of stigma. Of stereotyping. I explain the speaking (or not) by saying it’s a sliding scale – the ability of an autistic person to push words out via speech. You can be anywhere on the scale. Sometimes, different places multiple times a week! My child happens to be on the ‘sportscaster shouting every thought that flits through her head” end. At least, today she is. We discovered that she communicates much better via text. Unsurprising, since that uses a different part of the brain.
I feel that…..well, that I will have a hard time putting this into words, for one….but that the communication deficit is, many times, a deficit of the rest of society. Parents, teachers, whoever. Society hasn’t wanted to bother to learn how to communicate with these minds that have some trouble vocalizing their thoughts. “My child doesn’t talk” Pfft. He doesn’t SPEAK. Your dog doesn’t talk either, but he lets you know when he wants something and you get it for him – because you have learned how to COMMUNICATE with him. People are the same. More complicated sometimes, but the same. You have to LEARN how to communicate.
We all do.
PS – my daughter has begun self advocating, and also explaining the behaviors of the more severely autistic children at school. “He screams because he can’t stand the feeling of you touching him – just like I can’t stand loud things. It’s part of his autism. Have some respect.”
Many autistics prefer not to speak, at least sometimes. Other have periods when they cannot speak.
Thanks for the comment
You are awesome, Amy! Thank you for your advocacy!
“How can a parent say that a child cannot have a coherent thought if the parent can’t understand the difference between communication and speech?” YES!!!!!
I have Autistic Spectrum Disorder and I find this posting of your very awesome :D you are right! You have got it spot on! I despise parents (and anyone else who thinks like them) who think people like us, who have our own mind and stuff, are “not real Autistics”; I have only one thing to say to those parents: Define real! :D
You deserve all the good and happy things in life Amy! :D
Keep it up! :D
P.S. I also write quite a lot of things! xD
This is wonderful, Amy Sequenzia. (Ok, I know this comment gets posted to my timeline. Everyone go read it, thanks.) Because Autism does have hard parts, and life has hard parts, and Autism has good parts, and life has good parts, and parents like to make a whole lot of false equivalencies, but those are not Autism.
You summarized it very well. Thanks!