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Why I Didn't Feel the Relief I Expected After My Autism Diagnosis as an Adult

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I’m not sure when I first started to think that I may have autism. It was something I pieced together over time, little things jumping out at me as I recognized myself in others. I’m an early childhood educator, so I spent a lot of time learning about autism, Down syndrome, ADHD, etc. And over the years I’ve worked with many children on the spectrum in various positions such as support staff and teacher. I started seeing myself in the case studies for school projects, I could relate to the children in my care. There was a little voice inside my head telling me to look into this further, but there was a bigger voice in my head that told me that I was being overdramatic and it was silly for me to even consider the idea. I don’t match the stereotypes.

When I first mentioned this to my therapist, she first asked me why I wanted to know. Did I want to know so I could maybe understand myself better? Or did I want to know so that I could get disability money from the government? Once I confirmed that the reason, I wanted to know was so that I could learn and grow as a person, she told me that she didn’t think it would actually be helpful to know at this point in my life. However, she humored me anyway and consulted with a colleague who confirmed that it would actually be helpful to know, and forwarded a test for her to go over with me. I scored highly on this test and she then sent me for a referral to a specialist for confirmation. In September of 2020 at the age of 29, that specialist confirmed that I did indeed have autism.

I thought I would feel relieved. I thought surely this was going to be the missing piece of the puzzle that would solve all of my problems and fix whatever was “broken” inside me. However here we are well over a year later and I can tell you that it did not. There was no missing piece of the puzzle — who I am is exactly who I always was. Being diagnosed didn’t change that. There was nothing to fix, there is nothing wrong with me. I still have to remind myself of that on a regular basis, but it’s less about the autism and more to do with other things. But I still didn’t feel relieved. If anything, I feel like a fraud.

I spent 29 years thinking that all of my little “flaws” were things that made me a difficult person, a weird person, an antisocial person, and a selfish person. For example, I get easily overwhelmed and overstimulated. Sound can sometimes physically hurt, especially in the morning the cause of many arguments over the years with family and friends who like the tv on or the radio – or worse, the TV and the radio together for background noise. Who wake up and are ready to carry on a conversation immediately. That makes me a cranky and difficult person.

I like to have a routine and a schedule and to be able to know what is happening as much as possible. I don’t like change. That makes me difficult to work with and a bad employee. I can’t sleep unless my hair is up and away from my neck and ears, not tied back but pushed out of the way. My pajamas need to be in exactly the right position, not riding up my legs or twisted around my side. My blankets must be perfectly placed over my body to cover every inch up to my ears, not a single toe or elbow out of place. That makes me weird.

I need time alone. I crave the quiet solitude of my room where I can turn off the entire world. I put on mindless television or read a book or blast my music and sing along. I don’t like to be interrupted during these times and can be cranky, especially if I am in the middle of singing along to a song. I don’t like to go out to bars and clubs or crowded places where there are too many things happening all at once. Unless it’s a concert; music is the exception.

I don’t like to meet new people and generally will not go anywhere alone if I don’t know people that are already there. There are times when I do not like to talk at all, not in person, not through messaging online or texting. That makes me antisocial.  Although I do love to talk about the things that I like: Harry Potter, Doctor Who, music, etc. And I can talk a lot about those things and really anything if I am comfortable with you. I can talk loudly, fast, and for a long time. That makes me feel like I must be selfish. I constantly find myself asking, “Sorry, am I talking too much?” and saying, “You know, you can tell me to shut up if I’m talking too much.” I also don’t like physical touch in most circumstances, although the pressure of a well-needed hug can come in handy when things are rough.

After 29 years of being told all of those things and more make me an antisocial uncooperative jerk, I find it hard to accept that there may be a reason behind all of this. That knowing that I have autism can help me to understand more about myself and help me manage and cope in a world that “wasn’t made for me.” I can’t see past the fact that I am just a difficult person, so I can’t accept when my therapist says something like “that may have something to do with the autism — let’s talk more about it.” So instead, I feel like a fraud. I can’t talk about strategies and ways to make things easier for myself because I can’t accept that there is any explanation for my behavior, other than I am a difficult adult and I am completely responsible for my own behavior, no ifs, and, or buts.

If you pair me with a child who has disabilities, I will do battle for that child. I will move mountains to help that child thrive and grow into the beautiful soul that they are. But I can’t do that for myself. I understand the children I work with, and I can relate to the children I work with but I cannot treat myself with that same love, respect, and care. There is a tiny part of me that cries for the girl that I was growing up. I know how much easier things could have been if I had been diagnosed as a young child.

Someday I hope that I will be able to see past my first 29 years of life and move past this last year and a half where I have felt like an outsider in both worlds. I hope I will see myself grow and thrive as the person I am — the person that I have always been.

Getty image by useng.

Originally published: February 22, 2022
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