This article was originally posted by Professional Audie on Medium.
Do people consider you (or a loved one) to be a “quirky” person? Do you consider yourself a highly sensitive person? Do you have anxiety and are on SSRIs, or may be considering going on them?
PLEASE READ ON. THIS IS IMPORTANT.
Since I started talking publicly about being autistic, I’ve had a surprising number of people tell me they relate to what I’m saying, who have gone and done an online test, who I’ve had some chats with about shared symptoms, and who now think they are autistic. This doesn’t surprise me because birds of a feather flock together and I’m not surprised to learn that I’ve accidentally been preferencing neurodivergent friends without realising.
But one thing that has come up quite a few times are friends who are really struggling with the medication they’ve been put on by their doctors, and having seizure-like symptoms. I’ve been doing quite a bit of research and it seems there is a link between autism, epilepsy, and SSRIs.
I’ve recently discovered that more than 25% of autistic people have higher levels of serotonin than neurotypical people.
Also, many autistic people also have ADHD – 50 to 70% of individuals with autism spectrum disorder (ASD) also present with comorbid attention deficit hyperactivity disorder (ADHD) – there’s a lot of debate in the autistic community at the moment about whether ADHD is a separate disorder or a different presentation of the same spectrum. People with ADHD also don’t have a serotonin problem — they have a dopamine problem.
People on the spectrum are also generally very sensitive and in tune with their bodies (whether they are fully aware of it or not), and are likely to be highly sensitive to medication.
- Agitation or restlessness
- Dilated pupils
- Changes in blood pressure and/or temperature
- Rapid heart rate
- Loss of muscle control or twitching muscles
- Shivering and goosebumps
- Heavy sweating
And in severe cases it can be life threatening and these symptoms may occur:
- High fever
- Uneven heartbeat
- Passing out
Do drugs help?
I also found this medical article which talks about how drugs may not even actually help autistic people:
Although 70% of children with ASD receive medications, only limited evidence exists that the beneficial effects outweigh the adverse effects.
Selective serotonin reuptake inhibitors (SSRIs) are widely prescribed for children with ASD and related conditions. Beneficial effects on children and adolescents with ASD have been reported with fluoxetine, escitalopram, and citalopram. On the other hand, a multicenter, randomized, controlled trial by King and colleagues in 149 children with ASD found no difference between citalopram and placebo among children rated as much improved or very much improved.
Children with ASD are at risk of developing a serotonin syndrome when treated with serotonergic agents. Therefore, children who are treated with serotonergic agents should be evaluated at baseline before beginning treatment and then regularly evaluated for symptoms of a serotonin syndrome using the serotonin syndrome checklist.
My story with medication
For me personally, the first drug I was put on was Quetiapine/Seroquel. I felt like an absolute zombie on it, and when I did more research into it I found it was an antipsychotic for mood disorders like schizophrenia and bipolar and I had no idea why my doctor put me on it, because I hadn’t had a formal diagnosis of any of those disorders. A few years ago when I burned out my doctor (a different one) put me on Sertraline/Zoloft for anxiety, and again I felt like a zombie. I felt like it was actually making me worse. Both times I told my doctor I didn’t want to be on them and I managed to convince them that I should come off them, but I really had to strongly advocate for this as they wanted me to stay on them.
Now, I am in no way suggesting that you should come off SSRIs if you’re on them or not consider going on them at all. There are risks of coming off SSRIs (such as increased depression or anxiety returning, brain fog, brain zaps etc) and this should always be discussed with your doctor beforehand. It’s a whole process.
Doctors not knowing much about autism is risky business
These are just my own personal experiences and I want to state that I am in no way anti-medication. There are times, places, and reasons for medication and I hear many success stories of people going on SSRIs or other drugs.
However, I consider myself to be a very smart person, who has had some of the best medical professionals over the years, but neither they nor I knew that I was autistic. The reason I’m writing this is that so many people do not know they are autistic.
Therefore, they do not know that they are at risk of serotonin syndrome, or that they should have their blood levels tested before and while going onto SSRIs.
I am concerned how many people are now starting to self-identify with neurodivergence but are probably unaware of how all these bits of information could be related, or that they could be at risk of experiencing serotonin syndrome, or may even be experiencing it right now now without knowing.
Please do an autism screener before going on SSRIs
So to go back to my questions at the start of this post — do people consider you to be “quirky” and are you a highly sensitive person (aka, autistic traits)? The stats I’ve seen for the prevalence of autism is 1 in 70, but based on what I now know and all the discussions I’m having with people, I honestly think this number is actually significantly higher.
If this could possibly be you, I strongly recommend that you do a short online test to just rule out whether or not you might be autistic, because in my experience your doctors and psychologists probably aren’t going to pick this up for you.
There are free online versions of the RAADS-R test that you can take to see how many traits you present with.
This information could change your life.
There is no shame in being autistic. The only shame is how the medical profession is failing us.