The Mighty Logo

Autism and Me

The most helpful emails in health
Browse our free newsletters

My past articles on my autism were all written during the waiting period between my referral and my official diagnosis. On June 17, 2018, I was diagnosed. A month later, an in-depth 12-page diagnosis report arrived at my house. This is my first post-diagnosis article.

In the period between then and now, I’ve graduated Sixth Form College with two solid Bs, and been accepted for the university of my choice, which I have deferred until 2019. I’ve also finally had the time to sit down and think about my diagnosis, and the contents of the report that followed.

For a while, I switched off from it all. The day of my diagnosis, though so positive, was probably one of the most exhausting experiences of my life. It was at a clinic over an hour away, and I had to build a timeline of myself and talk it through with a complete stranger. It was a challenge I was not completely ready for, as my appointment became available after a cancellation.

I haven’t spoken about my diagnosis in any detail to anyone. My counselor and autism support person at college aren’t around like they have been for the past year, since the diagnosis happened after I finished the term and did my final exams. I didn’t know how to describe it to anybody else without it seeming like I’m trying to make the universe revolve around me. Then finally, I decided to type it up as a private monologue in a Word document, which is how this article came to be.

The truth is that I feel entirely conflicted. When I decided the diagnosis of autism would best suit me, given all the problems I’ve faced in my life, I never considered for a moment that acknowledgement of the fact might affect me. But reading my 12-page report, I see so many things summed up.

It started with my childhood:

“Jacob always showed signs of social difficulties.”

“Jacob would have fitted the little professor stereotype of an autistic child (confident with in-depth technical conversations, but unable to do child-like chit chat).”

And on to later life / the present:

“Jacob is rigid in his routines… resistant to change.”

“Jacob has had a series of intense special interests.” 

And then fully into socialization:

“Jacob described himself as not being very good at facial expressions or eye contact.” 

“Jacob’s tone of voice was quite flat and gentle through this assessment.”

“He recognizes a difficulty in receptive nonverbal communication such as reading a mood or facial expression.”

 “This is indicative of someone who has an impairment in natural nonverbal communication, and [who] has to compensate cognitively.” 

Other points included:

My use of a sensory toy in my assessment (a Tangle, which I would highly recommend to anyone who stims or fidgets generally), my stims throughout life and in the room, my meltdowns, my struggles and how I might continue to struggle, my hardship with emotions, and my overarching poor social skills.

Then there were the results for the paperwork tests I did during my assessment — a Sensory Profile test, an Autism Spectrum Quotient test, the Cambridge Behavior Scale, and finally, a Social Communication Questionnaire.

For the sensory profile I had a score of 89 which indicates a “Definite Difference” followed by an evaluation of my sensory profile via comments I made in addition to the test during the assessment.

I scored 48 on the AS Quotient test, which is highlighted with the comment “80 percent of people with an ASD scored 32 or more in testing (2001 figure).”

Similarly, I scored 8 on the Cambridge Scale, with “80 percent of people with ASD scoring 30 or less (2004 figure)” and on the Social questionnaire 24, with a “score of 15 or more suggestive of ASD.”

My diagnosis is post DSM-5, and therefore I’m “Autism: Level One” but this has been confirmed to me within my recommendations summary as being equivalent with the previous label of Asperger’s. The leveling system disregards controversial functioning labels, and considered needs at the time of diagnosis (e.g. my report concludes with the fact I could need as much support as a level two diagnosis as I progress in life).

My report took a long time to read, and I have to admit I get a headache just thinking about it, but it is all followed by the conclusion of my assessor, and recommendations to myself and my GP (and whomever else the report is passed onto in the future).

The conclusion repeats all my difficulties of course (most of which I covered in my own words in my article before this: “Exploring My Autism”) — but there is one paragraph in my report that sticks with me as particularly poignant:

“It is also important to note that being autistic has strengths. The autistic approach to social interaction often has increased honesty, consistency, as well as fairness and freedom from personal agenda.  The need for correctness can also combine with the intensity of interest and different sensory experiences to produce significant achievements. The desire for correctness and eye for detail can also combine with the intensity of interest, ability to persevere, and different sensory experiences to produces significant achievements also. The contribution of autistic people to the development of society has been immense. Success in life and well-being for autistic people is most often achieved by them and other around them accepting and reconsigning the positive attributes of the condition as much as analyzing and making allowances for [the] difficulties.”

When I consider this inspiring analysis, I suddenly realize my greatest mistake. I have been so automatically thinking about my autism as a part of me, that I have missed the correct conclusion. Autism is me — not just a part of me, it is all of me.

There is no separating myself and autism. Nor do I want there to be. It shapes my world, my understanding of all the things in it, and that will never change. The past 18, now nearly 19 years, and indeed the next 18 years will all coexist with that fact. I have nothing to be ashamed of. Despite what others might think of autism, I wouldn’t give up my eye for detail, my intense passion for subjects others might never have heard of, or my imagination for all the money in the world.

Sensory overload is tough, social difficulties too. But I can be even tougher. Above all else that I’ve learned about myself through my diagnosis is that all the struggles that come with autism are survivable, and that I can do whatever I want to if I try hard enough, even if I need some support and understanding along the way.

My main goal now is to understand the life ahead of me, with the knowledge of autism I have and the new knowledge I gain in the near future. I’m glad The Mighty is around to help me with this, be it my place to vent, or one of the places I can find comfort and gain insight from the words of others.

I always like to end these articles on a positive, and as such, I’d like to recall the fact I recently learned my first Mighty article on adult autism diagnoses was recently referenced to on an ABC news network article.

Though I’m not American, meaning it took a while to reach me, it was great to have my experience quoted to encourage others to seek an adult autism diagnosis if they think they might match the criteria. I love to hear feedback on how my words, be it my creative or non-fiction writing, have affected people. It reminds me that not only am I not alone in my experiences, but I might be making some small difference in the world.

Image via Blue Diamond Gallery.

Originally published: October 3, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home