Those of us on the spectrum often have additional diagnoses, with ADHD being one of the most common co-occurring conditions. When I underwent a neuropsychiatric assessment in 2003, I initially thought I would only be evaluated for ADHD (or rather ADD, as the diagnosis was called at the time, but which now falls under the umbrella term ADHD). The reason I didn’t believe I had autism was because I had fallen for myths about autism. I seriously believed that you couldn’t be well-liked or empathetic if you had autism, that you couldn’t be the person everyone confided in if you had autism, and so on. So, I was surprised when I also received an autism diagnosis!
I Have Very Little Energy
My neurodevelopmental diagnoses have sometimes caused me problems. I’ve always struggled to tackle household chores because they take a lot of energy. When I compared myself to my peers, it was strikingly obvious how much they were able to do and how little I could. Before my diagnosis, I thought it might just be my imagination that others had more energy than me, but the assessment team confirmed that wasn’t the case and that my perceptions of my abilites had been accurate. I wanted to do something about it which is why I agreed to try ADHD medication.
I Had Severe Side Effects
Unfortunately, I felt very bad on all three ADHD medications I tried – I experienced terrible side effects, but I tried to persevere. I became nervous, hyperactive, restless, and aggressive, and I’m normally very calm – I’ve never been hyperactive, restless or aggressive before. Changing the dosage didn’t help either. And these weren’t minor side effects, but side effects that severely lowered my quality of life! Eventually, my then-husband and a friend told me directly that I had become unbearable to be around and that they couldn’t stand me anymore. They suggested I stop taking the ADHD medication, which I eventually did.
Everyone Thought It Was Nocebo
For several years, I almost doubted my own experiences because hardly anyone believed me when I told them I had experienced very severe side effects from the ADHD medication. People told me that ADHD medication couldn’t cause restlessness and hyperactivity. I was told that my perceived symptoms may have been due to the nocebo effect, which is the opposite of placebo: specifically, nocebo means that a person imagines that a drug or treatment causes negative effects, even though the truth is the opposite. A person experiencing a nocebo effect genuinely feels that their perceived symptoms are severe and real. Both nocebo and placebo are proven phenomena!
I Received Confirmation
The idea of a nocebo effect seemed strange to me because the symptoms and side effects I experienced were very strong, and as I said, I had never been restless or hyperactive before! But sometimes I thought I might have imagined it all. Therefore, I was very happy when I recently read about new research on ADHD medication, where the author stated that people without ADHD actually tend to become restless and hyperactive from the medication. “Wow! So it’s actually possible to become restless and hyperactive from ADHD medication, and researchers know about it,” I thought. I don’t belong to the group of “people without ADHD” because I have an ADHD diagnosis, but if people without ADHD experience these negative effects from ADHD medication, why wouldn’t some with ADHD also experience them? Or what if I don’t have ADHD at all and received the wrong diagnosis?
The Form of ADHD Doesn’t Matter
Some believe that people with ADHD who also have autism may not be helped by ADHD medication, and others believe the same applies to people who, like me, have the inattentive form of ADHD (previously called ADD). However, there is no research to support these claims! On the contrary, research has shown that it’s impossible to predict who will benefit from ADHD medication, and it doesn’t matter what type of ADHD the person has or whether they also have autism. So, the fact that I have autism and the inattentive form of ADHD can’t be the reason I had a bad reaction to the ADHD medication – I’m one of the 30% who aren’t helped by it.
Many Are Helped By ADHD Medication
Please note that many are helped by ADHD medication, and just because I experienced side effects doesn’t mean everyone does! It’s important to remember that two-thirds of people with ADHD benefit from ADHD medication, so my experiences are by no means a universal truth. But I was relieved to have confirmation that it’s possible to become hyperactive and restless from ADHD medication, and that it wasn’t just my imagination!
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