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Why Being Labeled 'High-Functioning' Hurts Me as a Person With Autism

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“I have to say, you’re the most high-functioning autistic I’ve ever met,” my neuropsychologist said with a smile. “I’ve treated hundreds of people with autism and you really took me by surprise.  You must have learned to adapt very well at a young age.”

I was 37 years old and finally, after a lifetime of questions about why I struggled with things other people seemed to take for granted, here was an answer. Autism. The reason why I struggled to keep the “flow” in conversations.  The reason why eye contact felt forced, almost painful at times.  The constant sensory overload, the barrage of smells, sounds, and light. The prosopagnosia which caused me great embarrassment in my professional life as I struggled to remember colleagues’ faces. The stimming I cleverly learned to hide by the time I got to high school, aware that my teachers and other kids thought it was odd. Autism. Finally, it all made sense.

“There’s not really much I can do for you,” my neuropsychologist continued. “You know, your autism may have been a problem for you when you were a kid and if we’d caught it then, we’d have some more options to help you. But as I see it, you’ve learned to cope very well. You’re holding down a job, a relationship, and you’re highly educated. If you want to continue seeing me to talk about your depression, you can. But I think you’re doing a great job. You are extremely intelligent and high-functioning.”

I sat there, stunned. I had finally received the answer I’d been searching for most of my life and at the same time I was being told there was no help available at my age. I had no idea what to do next.

I started by reading every blog and book on autism and Asperger’s syndrome I could find. I found it especially helpful to read about the experiences of women on the autism spectrum, as currently autism is still seen as a “boys’ club” with the disorder being 4.5 times more common in boys than in girls.  I learned that many people, like myself, had been misdiagnosed with social anxiety and ADHD before receiving the correct diagnosis.

Despite having this newfound knowledge about myself, I still struggled with the same issues as before. Talking to people was hard. I fumbled through conversations, never sure of how social interactions were supposed to work. I could fake it pretty well, but it took a lot out of me. I still felt as though everyone else had been given a copy of some secret Social Rulebook and I was left constantly guessing at the rules. My significant other continued to complain about my flat affect, never knowing how to tell what I was feeling. I tried to explain that oftentimes I struggled to label my own feelings and I couldn’t seem to force my face to reflect what I felt.

Even with a diagnosis, I still felt like an outsider in my own world.

I contacted my county’s board of disabilities and was told I was over the age limit to receive autism services unless I was “low-functioning” enough to receive disability. I contacted a private autism services agency in my area and was told they had no services available for someone my age. I called my insurance company to ask about available services and was informed that they do not cover any autism-related services for adults. More dead ends.

Yes, I am “high-functioning” enough to call agencies and my insurance company. Yes, I can hold down a job and a relationship. That doesn’t mean I don’t need help with certain things.

I don’t wear my “high-functioning” label as a badge of honor or take it as a compliment. Being “high-functioning” means I’ve learned to cope with my challenges on my own when help should have been available. Being a “high-functioning” autistic person has contributed to my “high-functioning” depression because I can  easily pass as “normal” in society. My challenges are, for the most part, hidden.

And ironically, being able to “pass” is just what society wants us to do.

Originally published: October 3, 2016
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