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Don't Make Assumptions About My Asperger's

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I recently faced something a lot of adults with autism face, especially those of us who were refused a diagnosis early on or were diagnosed once we were already adults. The other day my Autism lecturer said the wrong word in a lecture. She called a meltdown a tantrum — they are completely different. I went to meet her during the break and asked if she could be more careful, because she was teaching people who would go on to work with autistic individuals. I explained I myself have Asperger’s syndrome. She was kind and said I was right and she hadn’t considered that; she just meant to simplify the language. But she went on to say something unnecessary which struck me in a way I never expected.

“Sorry, I am not used to having autistics in the class. You get so much more help nowadays.” With that sentence, she destroyed the years of work it took to get me to university and put it all down to “getting help” — which was something I never had. To act as though I was only at the university due to some imagined assistance hurt me, because she didn’t realize how much I went through to get to that university.

When I started primary school no one would diagnose me as dyslexic, so I didn’t get much help. One teacher took me aside and tried to help me and a few other kids with spelling, but that was it for my early school years. She was able to help with my spelling and honestly my reading wasn’t too bad. She was my saving grace and Miss Chivers, if you ever read this, I will never be able to thank you enough. I didn’t get any help for my Asperger’s syndrome; I had been refused a diagnosis because I was a girl, so the only support I got there was from my parents. Still I worked hard and got good enough grades to get into the top tier of all of my classes once I got to secondary school (high school).

There I got a little more dyslexia help, again only with my spelling. I was allowed to type but everything I did, and I did it by myself with a little extra help. The help I got didn’t give me an advantage, it aimed to level the playing field and still none of it related to my Asperger’s. I worked hard and took extra classes while helping to care for my severely autistic younger brother. I was bullied and talked down to by more than one of my teachers on a regular basis, but I tried not to let it faze me. I was never popular, but I kept my head down and did my work and got on with everything. I was dedicated and studied for hours a day.

I would up achieving 15 GCSE grades of C-A* grades. I pushed on at the same school to sixth form where I developed panic disorder, forcing me to drop one of my A level classes, but I refused to drop out completely. I don’t believe in quitting when things get tough, otherwise I would have never gotten anywhere. I went to some counseling and took up work experience volunteering at a special needs school, helping others to achieve their best in a harsh system I knew all too well. My dedication was rewarded; I got grades AAB and got into one of the top universities in the country, a university in the top 1 percent in the whole world.

When I got to university, things changed. I became popular, students liked me and appreciated my unique experiences, and I theirs. I received full support for my dyslexia and continued counseling for my panic disorder. I also was able to manage my other mental health struggles. My Asperger’s and my difficult relationship with food were finally at a place where I was comfortable and able to study. I was studying psychology, something I cared very deeply about and suddenly things were finally going my way in life. It was at this point in my life I got sick. I resorted to using a walking stick and pushed on for my entire first year, missing only three lectures over the entire year. At the end of this year I learned I had endometriosis and had surgery to resolve it, which showed I had had one of my ovaries fused to my bowel. Through this I continued the way I always had.

The pain got better for some months, but then got even worse. A specialist said I must have something else, that there was something else along side the endo. I underwent investigation of this, but the pain got worse and worse. I have been admitted to hospital three times with this pain, and stayed between 2 weeks and 2 days. The pain gets worse every day. I used a stick until I couldn’t walk more than 10 feet without breaking down and getting dizzy and nauseous. It got to the point the pain shot through the entire right side of my body every time I moved, so to get to lectures I went in a wheelchair. I pushed every day to get to where I needed to go and do the work. But even that got to be too much; it hurt so much I could barely stand it. I went into shock multiple times from the pain, vomited, cried and screamed.

And then after all that work, my accomplishment was put down to extra help. I was told that I must only have gotten to that university due to the new help available, help I never got. It was as though she had only seen my diagnosis. Her mind thought of autism and thought I was less than in some capacity, that I automatically must require assistance because of it. The truth is, a lot of us on the spectrum don’t need help; sure it’s great to be supported, but we don’t need it for every aspect of our lives. I didn’t need help for it in school or to get to university, though I sure could have used it socially because that is how my Asperger’s impacts me. Previous individuals on the spectrum may have required it, but that was them and this is me. We have neural pathways that differ from yours, but ours also differ from each other.

Although what the lecturer said upset me and angered me, it made me realize how far I have come, and how far I could still go. Although her words enraged and confused me at first, they encouraged me to look back at everything I have fought before this. I still struggle with mobility, I am still being investigated for my pain, and studying is hard, but I made it. My Asperger’s hasn’t stopped me. It’s a part of me and I fully embrace it. I love my Asperger’s. I haven’t accomplished anything despite my Asperger’s or because of any help. I have accomplished all that I have with my Asperger’s. Having different neuron pathways makes me different — not better, not worse. We are different in our own unique ways, so don’t assume anything. When you have met one person with autism, you have met one person with autism.

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Photo by contributor.

Originally published: December 17, 2017
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