Who Gets Overlooked on the Autism Spectrum?
I recently watched an interview with Temple Grandin. She’s an amazing advocate for people with autism, and I have always been a fan of her work. That hasn’t changed. However, while watching the interview, I realized we may view different parts of the autism spectrum through different lenses.
She expressed concern about the autism spectrum expanding and that those with higher support needs may not receive the attention and support they need. While it’s important that everyone gets the support they need, I don’t know if I completely agree with her perspective.
People with higher support needs often have more visibility because it can be physically obvious that they need assistance. It’s those who come across as able-bodied who are often left in the dark. I am one of those people.
She mentions that people who are considered higher functioning are sometimes coddled. Maybe that’s true for some people, and we aren’t in those households to judge. I agree that anyone on the spectrum should be encouraged to grow because the world is not designed for us. Nonetheless, we need to learn basic skills to function, and anyone with a support system should be taught those skills to the best of their ability.
As someone who struggles with my diagnosis every day, I am currently in a phase of learning to embrace who I am. Ms. Temple states that many people make their diagnosis their identity in a sense. My response to that is that people who are diagnosed later in life may talk about their diagnosis frequently for a while. This is where my experience differs from Ms. Temple’s. She was diagnosed early and had a wonderful support system, especially in her mother. Not all of us are that lucky.
Now, I acknowledge what she is saying, and I know she is still advocating for the autism community. She isn’t completely wrong. She is simply supporting a different part of the community. I stand firm in my advocacy because I was completely shielded from my original diagnosis and forced to work harder under circumstances where I needed support. It altered me as a person.
I brought a child into this world unaware of my own diagnosis. While I am grateful for my children, that was information that should never have been kept from me. I fought like hell to get through this world. Can you imagine spending your entire life feeling like something is wrong with you and not being able to put your finger on it? Can you imagine the mental toll that takes?
Finding out as an adult at 33 years old was shocking, scary, and a relief all at the same time. It has only been a few years since then, and I am still chipping away at self-discovery.
Because I was essentially forced to fit into society, I am labeled as capable, even by my own family, despite the fact that they struggle to understand the process of unmasking. That’s the key word here: unmasking. Becoming the person I was always supposed to be.
Due to my parents' decisions, and yes, I will go as far as calling it negligence, I became someone the world needed me to be or expected me to be. That kind of damage requires support too.
I am not saying that people with higher support needs should not receive the resources they need. They absolutely should. But I do not believe that people with lower support needs should receive any less support simply because their struggles are less visible.
As a matter of fact, why is this a contest about who needs more support?
Support is support, and anyone who needs it should have access to it regardless of where they fall on the spectrum.
I battle every single day with tasks that I cannot seem to overcome no matter how aware I am of my challenges. I still struggle every day, yet I come across as capable.
Just because I come off as capable doesn’t automatically mean that I am.
That’s something that needs adjustment in this community.
I'd be interested to hear other perspectives on this. Do you feel certain groups within the autism community are overlooked? Has your experience been similar or different from mine?