Autistic community: we need to talk about the ways we approach parents of autistic kids.
This is a touchy subject for basically everyone, so I’m going to try my best to articulate myself.
Know that I’m speaking as an autistic person whose parents were not always accepting.
This is a touchy subject for basically everyone, so I’m going to try my best to articulate myself.
Know that I’m speaking as an autistic person whose parents were not always accepting.
To do this, I’ll describe a common scenario. We have two fictional main characters:
-Jane (a newly diagnosed autistic girl)
-Liza (Jane’s mom)
When Jane was diagnosed last year, the doctors made it sound scary. They said she needed intensive treatment and intervention.
-Jane (a newly diagnosed autistic girl)
-Liza (Jane’s mom)
When Jane was diagnosed last year, the doctors made it sound scary. They said she needed intensive treatment and intervention.
Liza didn’t know anything about autism before Jane was diagnosed.
All she had heard about autism were sad things that came from an organization called Autism Speaks.
She thought they must be a good organization, if they have so much funding and support among other parents.
All she had heard about autism were sad things that came from an organization called Autism Speaks.
She thought they must be a good organization, if they have so much funding and support among other parents.
Jane’s doctor told Liza that her daughter would likely never speak, but he never discussed alternatives like AAC.
Then he gave her a flyer for a support group for parents of newly diagnosed autistic kids.
These things scared Liza. She started to feel very upset about autism.
Then he gave her a flyer for a support group for parents of newly diagnosed autistic kids.
These things scared Liza. She started to feel very upset about autism.
Liza was suddenly given lots of recommendations by parents in the support group.
They told her to put Jane in ABA therapy immediately, because “early intervention is key.”
She listened to them, because they seemed to know more than she did. They were more experienced.
They told her to put Jane in ABA therapy immediately, because “early intervention is key.”
She listened to them, because they seemed to know more than she did. They were more experienced.
Liza did what the doctors and fellow parents told her to do.
She enrolled Jane in ABA therapy for 25 hours a week, and listened to the therapists when they told her what was best for Jane.
After all, she thought, these people are the experts. But she still felt uneasy.
She enrolled Jane in ABA therapy for 25 hours a week, and listened to the therapists when they told her what was best for Jane.
After all, she thought, these people are the experts. But she still felt uneasy.
One day, Liza found the hashtag #ActuallyAutistic. She didn’t know what it meant, so she clicked on it.
She saw a lot of autistic people talking about identity-first language, how ABA is unethical, and how parents should not grieve their autistic kids.
She was stunned.
She saw a lot of autistic people talking about identity-first language, how ABA is unethical, and how parents should not grieve their autistic kids.
She was stunned.
Liza started asking autistic people questions. They were challenging a lot of things she had been taught by experts, and she wanted to know why.
Some of the things she said when asking those questions or making statements about her beliefs, offended autistic people.
Some of the things she said when asking those questions or making statements about her beliefs, offended autistic people.
This story could go one of two ways:
Either the autistic community could recognize that she needs our guidance, or we could shun her for supporting things we don’t agree with.
Liza is not a bad person because she was misled by “experts” and people in power.
Either the autistic community could recognize that she needs our guidance, or we could shun her for supporting things we don’t agree with.
Liza is not a bad person because she was misled by “experts” and people in power.
Liza doesn’t want to hurt us.
I repeat: Liza doesn’t want to hurt autistic people.
She is confused, and she needs help. Attacking her for being misinformed helps nobody.
Direct that energy at those in power, like Autism Speaks, who create a negative image of autism.
I repeat: Liza doesn’t want to hurt autistic people.
She is confused, and she needs help. Attacking her for being misinformed helps nobody.
Direct that energy at those in power, like Autism Speaks, who create a negative image of autism.
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