By Eve Reiland
What would Autistic healthcare look like today if parent-centered autism organizations didn’t push their agendas with autism interventions and research for a cure, and instead focused on supporting Autistics throughout their lifespans?
This is a question I’ve repeatedly asked myself the past couple of months after finding out I had been misdiagnosed with Rheumatoid Arthritis (RA). I was originally diagnosed with the condition in my late teens, and then again in my early 30s. In 2010, after the birth of my daughter and weaning her, I started treatment that included a biologic called Enbrel. What a mistake, and one I’ll be affected by for the rest of my life.
In the mid 2000s my oldest son and I were diagnosed as Autistic. At that time, I really didn’t understand what autism meant to me personally. I was solely focused on my son and getting him out of the school system and into adulthood alive. His suicide ideation, depression, and anxiety were apparent at age six and each year in public school only intensified those symptoms.
As far as my diagnosis of autism, I was in my 30s and really, what could anyone do for me? I’d been different from others my entire life, and having a word for it didn’t change anything. Being Autistic then didn’t affect my career. As an online developer and content creator for newspaper sites at that time, my brain was perfectly fit for it. Many of my work peers were finding out about their Autistic status as well.
After my son was diagnosed, I had the tools needed to get him support and help in the public school system. It never occurred to me that being Autistic was something that would affect my healthcare, or my son’s, in the future. It never occurred to me that being Autistic meant I had to be aware of common co-morbidities beyond the mental health affects of living different in a society that eschews and rejects those who are different.
How different would my life be today if real Autistic healthcare actually existed in 2010? Would I be considered as ‘severely disabled’ as I am now? The answer is I don’t know.
What I do know now, because I’m connected with the Autistic community, is that many of us also have a condition called Ehlers Danlos Syndrome (EDS). EDS is a common co-morbidity for Autistics, but rare in the neurotypical population. This is why many Autistics are extra-bendy and are able to sit in a W-shape position when young. This is why many of us don’t reflect age like our NT peers when we grow old. It’s also the reason why many of us need mobility support as we age, and experience other medical conditions that aren’t common with NTs.
What I also know now, because I’m connected to the Autistic community, is that I’m not the only one that has been misdiagnosed with RA, and later found out they actually had EDS. There are many of us.
For me, the harm from the misdiagnosis is irrevocable. In 2010, the pain from my RA (or so I thought) was in a flare-up I couldn’t manage and my mobility was being affected. I’d started treatment for the condition in 2008 but halted when I learned I was pregnant with my youngest child. She was 18-months when I started treatment again. This time, my rheumatologist put me on a biologic called Enbrel in addition to the chemo pills and steroids.
Oddly, the improvements my doctor expected me to have didn’t happen. In fact, I got worse. My pain was increasing and getting through each work day became more difficult. Simple things became a struggle and I couldn’t understand why, but pushed through the best I could. My doctor was going to give the Enbrel some more time to work, but if I didn’t improve she’d switch me to gold injections. Only, we never got that far. Before any of this could be sorted out, all hell broke loose.
On December 16, 2010 my life as I knew it was over. I didn’t feel quite right that morning but again, couldn’t place what was wrong. I pushed through and went to work. By lunch time, the heaviness I was feeling couldn’t be ignored. Something was very wrong. Vastly wrong. It scared me and I left work to go home. About halfway there I knew I wasn’t going to make it, and instead went to my mom’s house. I parked the car, walked into the house and then down I went with tics, tremors, and seizures.
That day I lost my ability to talk and be understood. I lost the ability to control my limbs and body movements in expected ways. I experienced amnesia, lost a lot of hair and went into a coma-like state for a couple of years. The chronic pain was excruciating. Just a soft touch of indirect light felt like fire on my skin. It felt like literal fire and I’d respond to it as such. Every vibration burned through me. Every sensory experience brought incredible pain. A soft touch would trigger a seizure. At this point, I needed help with the basics of life and no longer had the ability to care for myself.
After a lot of tests, doctors, neurologists and more – I was diagnosed with Psychogenic Non-Epileptic Seizures (PNES). The name of it has changed and it’s now called Functional Neurological Disorder (FND). This condition was explained to me as being related to my PTSD and childhood trauma. One neurologist told me if I just believed in my diagnosis it would go away. The stigma in regards to FND in the medical field is ugly. How some people treated me when I was unable to communicate, and they thought I couldn’t understand them, was even uglier. During this time I lost a house, a career, my ability to parent hands-on, my retirement, and my self-worth. Poverty and stigma were the welcome mat to this new life.
For many years, I communicated that I believed it was the Enbrel medication that triggered all of this. I tried both verbally and in writing that I didn’t disbelieve my diagnosis but wanted help in obtaining a better quality of life. I was easily having a 100 seizures a day. I believed the Enbrel was the trigger for my FND. It took me sometime to realize it didn’t matter what I said anymore. Once I was given a mental illness diagnosis I was considered crazy and nothing else I said mattered. I never went back on medication for RA. I absolutely refused.
Today I’m grateful for that decision. I didn’t know about EDS until reconnecting with the Autistic community in 2016. I didn’t know it applied to me for another few years. Now my doctor wants me to see a specialist not in my community to get some real help and information on it. Before that I have a few medical procedures that need to happen but due to having EDS and my health history, I needed extra-clearances from my cardiologist and others. It took a lot of hoop jumping and sign offs this past year to get them scheduled.
For some time, I mistakenly thought I had EDS and RA. It’s been recently that I found out I was wrong. Actually, it’s taken three confirmations for me to actually believe it. I don’t have RA. I never did. Thinking about what I’d be like now if I never took Enbrel is painful. Regardless, I can’t go back and change it. There’s nothing going forward to make it better either. This is what it is. I accept that.
For a moment though, imagine with me if real Autistic healthcare for our lifespans existed and wasn’t focused on research for a cure, vaccines or conversion therapy? What if my doctors and I knew EDS was a common comorbidity for Autistics then? I imagine my life would be different today if one of us had known to rule out EDS first before starting aggressive treatment for RA. How different I’ll never know because I was already experiencing symptoms of EDS which is what lead to the misdiagnosis. At some point, I know I would have to adapt to becoming disabled, but I imagine if I’d been properly diagnosed then that progression wouldn’t have been so sudden and traumatic.
This past couple of months, I’ve learned that I’m not alone in this. There are other Autistics who’ve had a very similar journey having EDS misdiagnosed. How far this harm reaches in our community, I don’t know. I do know there’s no amount of ABA that will ever fix what got broke in my brain due to that lack of knowledge. There’s no time machine to go back and change my path. All I can do now is share my story, attempt to bring attention to the situation, and hope it helps other Autistics to avoid this mistake.
My story is just one example of the fallout Autistics experience due to the advocacy of parent-led autism organizations that have refused to connect with the Autistic community in a meaningful manner. While they deny the harm caused, it’s Autistics that suffer their mistakes. It’s Autistics that are harmed for it. We’re the ones that have to bear their burden, not them.
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