Why Autism Doesn’t End at 18

I rack my brain as I try to fit pieces of a jigsaw puzzle together in the correct order. I have always hated puzzles. I cannot see how shapes fit together. Visualizing space is something I have never been able to do.

 

I am being tested. For the first time since my initial assessment for autism diagnosis when I was five years old. Now, at 24 years old here I am again, for updated paperwork so that I can get accommodations for a standardized test.

 

The test administrator doesn’t trust me. When he first encounters me I am met with judgment. I am sure he is thinking, “here is another privileged kid trying to take the easy way out.” How could I have autism? After all, I looked him in the eyes and my demeanor is exactly like a nuerotypical to any observer.

 

Lately, I’ve been wondering too. I know I am autistic, but now I can control my meltdowns and blend in with society. I am having doubts of who I really am. Perhaps I will no longer test into the diagnosis of autism. Perhaps, after all these years and all this therapy I no longer meet the criteria. After all, I feel more in control. So many people doubt me when I reveal this part of myself. Eventually, you begin to doubt yourself too. Yet here I am, frantically attempting to drown out the hum of the lights that I’m certain only I can hear while assembling this timed puzzle.

 

“Even if I do qualify for accommodations, who am I to take them when there are others who need services so much more than I do?” I think.

 

I am able to go through life without much special help from society and be independent. My life would still be significantly easier if options for help were available. I think back to the times when I didn’t have the words to express what I was experiencing to anyone around me. All I could do was meltdown out of anger, anxiety, and desperation to be heard. Now I have the words and capability to identify and regulate my emotions as well as the sensory overload around me. Maybe learning that skill was enough.

 

Exhausted, the timer runs out for the last time. I have completed the final portion. I await my results, certain they have changed as much as I have.

 

My test administrator, finished with the results, I imagine has a look of shock slowly come across his face. I am not able to give a facial description of the expression because I am face-blind.

 

“This is incredible,” he says quietly, almost apologetically.

 

He looks at me. I brace myself, ready for the impact of the news that I am no longer who I thought I was.

 

“I’ll admit, I was skeptical about this,” he says.

 

He begins to show the results to me and explain them. I myself feel a wave of shock coming over me.

 

I have tested exactly the same as when I was five years old. Not one number has changed.

 

Additionally, my IQ discrepancies have not moved at all. What could this mean?

 

I slowly begin to realize the greatest lesson I have learned about myself. My brain is exactly the same. And no matter how well I learn to mask, accommodate myself, or regulate my emotions or sensory overload, it does not change who I am. I may be a functioning adult now with a wonderful quality of life, but autism is still a part of me. Just because a lot of the work I do to compensate has now become second nature and even sometimes subconscious, does not mean I do not work hard every single day to be in this world.

 

I have not become less autistic. I will never be “less autistic,” rather, I have learned how to follow my strengths. My weaknesses such as spatial relations, face blindness, and sensory overload have not gotten stronger, but I have learned strategies to accommodate myself in everyday life for these things which has made it feel easier.

 

“The results are undeniable, no medical professional could deny this for accommodations,” he tells me.

 

I leave the testing. I feel a sense of being whole. My doubts about my identity, who I am, washing away. Autism does not end at 18. It can’t. Autism is a part of me just as having brown eyes or hair may be a part of you.

 

Walking away with these realizations I begin to wonder, “then why am I still having to battle every step of the way for the accommodations I deserve? Why did it take a piece of paper to make a medical professional understand? More importantly, why did I need to be validated by this piece of paper too?” I have seen the same pre judgment and need for validation amongst neurotypicals too. Perhaps if we all spent less time assuming each other’s needs based on mere appearance, we would be a happier people.

 

Autism doesn’t end. But services seem to.

3 thoughts on “Why Autism Doesn’t End at 18

  1. I did not get diagnosed until I was 17. I feel confident in my diagnosis. But when I hear neurotypical introverts talk about some of the problems they face with socializing and sometimes sensory issues, I cannot help but wonder if I am actually autistic or just an introvert.

    Liked by 1 person

  2. This is part of a bigger problem a lot of autistic people have… the fact that a lot of neurotypical people expect that we autistics will have a specific “look” to us, and this isn’t helped by stereotypical media portrayals. The truth is, we could be “very autistic” and not show it, and need lots of supports and have disabilities that aren’t always obvious.

    I liked reading a lot! Thanks for writing this!

    Liked by 1 person

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