I just met a dad and his autistic son. Behaviors which had puzzled the dad for years I was able to instantly translate. It reinforced my frustration with the foundational things routinely missed by the autism industry - and why every autism entity NEEDS to hire autistic staff.
He told his son to say hi to me and the son whispered “Nooo!” and walked passed me. “I don’t know why he does that,” the dad said.
Me: “Often, placing sudden attention on us and putting us on the spot to do something can feel hugely uncomfortable. It’s a normal response.”
Me: “Often, placing sudden attention on us and putting us on the spot to do something can feel hugely uncomfortable. It’s a normal response.”
The Dad: “This is great advice. I wish he has listening to this.”
Me: “Oh, he’s listening. You’re listening to this, right?”
Voice of a kid hidden around the corner: “Yes!”
Me: “Oh, he’s listening. You’re listening to this, right?”
Voice of a kid hidden around the corner: “Yes!”
*was listening (not has).
The three of us were having a conversation about executive functioning. So, I spoke to the dad in his language and the autistic son in his language.
All autism organizations should focus on understanding autistic people first, then empowering us to navigate the world.
All autism organizations should focus on understanding autistic people first, then empowering us to navigate the world.
When we demand conversations about autism be centered around #ActuallyAutistic people, it isn’t just about focusing on autistic adults or a certain slice of autistic people. It’s about ALL of us - the verbal and non-verbal, those with all types of support needs, kids and adults.
The autism industry continues to misunderstand autistic people - ESPECIALLY those who are non-verbal or who have high support needs. This is because they rely on observation as filtered through unconscious bias. They then build approaches built on misconceptions.
I’m empathetic to this. They think they are being objective when in reality their perception is skewed. That approach has wasted the potential, and squandered the possible outcomes, of an entire generation of autistic people - wasting hundreds of millions of dollars along w/ it.
#ActuallyAutistic people must be significantly included in every autism organization and program to correct for this. We must be centered in conversations about us. We must be empowered (not dismissed or tokenized). We are the key to understanding and accommodating ourselves.
When a parent says “You’re not like my child” I don’t hate them. I want to hug them (ironic for an autistic person). That saying is an expression of the same frustration I have with the failures of the autism industry, albeit on the flip side of the coin. It’s failed us both.
Centering the conversation on autism around #ActuallyAutistic adults doesn’t just serve us. It serves parents, employers, educators, therapists, medical professionals, and the autism industry as a whole. #NothingAboutUsWithoutUs isn’t just about us. It helps them too.
**That was a long way of saying “I met a dad and his pretty amazing autistic kid today”.
