Autism: Not Broken?

I’ve been trying to write this post for 2 years now and I’m still not sure this is going to come out how I want. But here goes… When I started this blog in 2015, I agreed that we are “not broken” because we are on the autism spectrum. And to be clear, to paraphrase the definition of “broken,” it means “damaged and no longer in working order.” I never thought of myself as “broken,” though I knew I did have some deficits but also clearly…some strengths.

Whether one is “broken,” however, does depend on ones definition of “in working order.” If the definition of “in working order” is can “hold a full-time job,” various surveys of those with autism spectrum disorder have shown that number is only around 14 to 16%.   Additionally, major criteria for determining disability are having trouble with “activities of daily living” (ADLs) which include bathing and feeding.  Now, I’m not talking just about people who physically have difficulty bathing and feeding themselves. If you cannot bring yourself to bathe for weeks at a time or forget to eat on a regular basis, you have some issues with ADL’s.

My point is…perpetuating the belief that those on the autism spectrum are “just different” like a pear is different from an apple, glosses over the very real difficulties that those on the autism spectrum have due to a neurological basis not just some personality quirks….including those like myself considered “high functioning.” But do we have a broken brain? Thus, we are “broken?” I’ll let you decide after you continue reading below; but, MY definition did change in February 2016, when “high functioning” became more like “broken” for me.

“High functioning” for me used to mean getting a bachelor’s then graduate degree followed by working full-time in a professional position in a hospital laboratory. Yes, I had significant social difficulties so there were “corrective action” talks and in later years, several firings usually with the reason given of “not a good fit.”  It was never “for cause.” Because those of us who are autistic are usually highly reliable, methodical and border on, if not actually, perfectionists. And I was no different.

Then one day in February of 2016, I pushed my brain for several hours on a new set of tasks at a job I had started about 6 weeks prior; and work and life was never the same. Now there had been a few warning signs over the last few years…such as decreasing ability to multi-task and some memory issues. Some would call it “normal aging” as I was in my early 50’s. And that’s all I thought it was until that day. When I got home from work (and I’m not sure how exactly I did that) I could no longer do simple tasks like make a meal; and my short term memory was practically gone. Confusion and fatigue became constant companions. Months of tests determined that my brain had slowed down like I was now in my 80’s instead of my early 50’s. I used my father for comparison as he has just turned 90. It wasn’t just all thinking that had drastically slowed down, my balance was off too. I could no longer walk and turn my head to talk or look at something without getting off balance. I couldn’t change the position of my head without getting dizzy. It sure looked like I had a broken brain. Doctors were no help. I did find some brain research that recommended supplements to help my brain to keep functioning and I started taking 20 pills a day. I took 2-3 naps a day. I became a person who had driven from New Hampshire to Alaska in 2015 and now could not drive more than a couple of miles without being overwhelmed.

Flash forward 2 years later and I can read more in one sitting than I could then and drive a bit further … although rush hour driving and highway driving are now things of the past. I now take usually just one nap a day. Otherwise, things are quite the same. I have trouble retrieving words, organizing my thoughts and speaking or writing without meandering. (My apologies if this article is somewhat unclear). I still cannot do a task such as volunteer work of helping hand out food from a food pantry or straighten up donated clothing … for more than 2 hours. Work is out of the question. I have to be very careful not to do too much or do anything too fast.  I still take the 20 pills a day as without them, the confusion and fatigue return in about a day.

So now my definition of autism and whether that means “broken” is quite different than before. I clearly have a broken brain.  Is this a cautionary tale of not working a high stress job for 30 years–if one is on the autism spectrum? And I say “on the autism spectrum” because lots of neurotypicals work high stress jobs such as physicians, nurses and police officers for 30 years or more and don’t have significant neurological problems. Is my case an extreme? So I posted my story on a couple of chatrooms for autistic adults to find out.

It turns out, my case, apparently, is not so isolated. One woman described it as “a door that silently closed in her mind.” A 59 year old man said his mind “blew out” in the mid-2000’s when he was a lawyer, though he is still able to work…doing research. Another woman, who is now 70, said after a life-time of stress she is now “too tired and confused to do anything.” All are on the autism spectrum.

You see in the mainstream media commonly all about the autistic children…but what you don’t see is what happens to those children who become adults and age over the decades.