Heard this one before? It’s a variation on the same war cry of baby boomers railing against the over-medicating and over-diagnosing of kids today. Ever talk to a baby boomer? “Back in my day, blah blah blah, blah.” Because I’m autistic with severe attention deficits, I generally only hear “back in my day.” The rest is usually a blur as I immediately turn my attention to more important things, like what I want to eat for lunch.
But it would be unfair to suggest that all baby boomers are this naive and shallow. Because, ironically, many of them have these “chronic illnesses,” most undiagnosed. Because the science was still in its infancy in “their day” doesn’t mean researchers and clinicians have invented “illnesses” that didn’t previously exist. This means nothing to those who believe that Big Pharma and Monsanto are colluding to create an army of chronic behaviorally disordered, asthmatic, oppositional defiant, dyslexic, epileptic, hyperactive bots.
But getting back to the original issue: are autism diagnoses really being given out to just about any nerd with a quirky personality? Ask any “autism mom” of a “low-functioning,” severely disabled child who thinks autism is way over-diagnosed because it doesn’t look like the “tragedy” they ended up with, and you’ll hear that autism diagnoses are somehow being given out based on superficial personality traits.
Ever seen the part of the diagnostic criteria where it says “[s]ymptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning”?
I’m aware that using myself as an example is anecdotal evidence only, but allow me to provide the two people who will read this blog an example of what “clinically significant impairment in social, occupational, or other important areas of current functioning” means.
I’m an Emergency Medical Technician. I have no set workplace: it varies from one emergency scene to the next, and includes a lot of time spent in the back of a moving box that makes loud noises and has a lot of bright, flashy lights. It is often a highly stressful job. It would be a sensory nightmare for some, but only moderately impacts me. I absolutely abhor being on scene with large crowds and lots of eyes on me which makes my skin crawl if I don’t refocus my energy on the person for whom I’ve been called. My brain cannot adequately process the noise and information overload that I encounter on some scenes, like the double opioid overdose in which I was accompanied in a small room by two unconscious bodies and several EMS and fire department personnel, as well as screaming bystanders held back by police. My anxiety, which I exhibit internally for the most part, increases in any group of people that continues to grow beyond three people.
But here’s a concrete example of what “symptoms cause clinically significant impairment” means in an occupational setting:
This patient (no information will be given due to HIPPA) recently had a tracheotomy. Patient had mucus building that was partially occluding her airway. On our arrival, patient was worsening quickly. After patient was loaded into ambulance for transport, patient’s condition deteriorated as oxygen saturation dropped below 80%. Patient’s tracheostomy tube had to be suctioned with assisted ventilation via stoma, as this patient could not breathe via mouth or nose. With two paramedics in the back of our ambulance trying to prevent respiratory arrest, they were unable to provide a report over the radio to the emergency department and asked me to give it while driving.
I am a single-tasker. It is not that I can’t multitask when necessary, as in this case, but it is much more difficult for me to do. While driving as carefully as possible with two unbuckled people and a patient in the back with lights flashing and sirens blaring, there was a lot requiring my constant attention. Sensory input: sirens, though significantly muted being in the cabin, are still loud enough to be overwhelming after several minutes. Attention to the road–driving with lights and sirens is very dangerous because other drivers on the road are highly unpredictable and often do not know what to do when an emergency vehicle comes up behind them or emerges into an intersection–while also simultaneously processing the noise from the sirens becomes overwhelming after a few minutes. Then I’m asked to give a detailed radio report to the hospital we are delivering the patient to while trying to pay attention to driving safely and processing constant noise from the siren.
This radio report is usually given by the EMT or paramedic in the back currently attending to the patient and involves notifying a nurse at the hospital’s emergency department about the present condition of the patient, why 911 was initially called, what we were presented with on our arrival, all medical interventions done or in progress, and a list of pertinent vital signs or downward trending vital signs. Because I was driving and giving a report simultaneously, I had to dramatically shorten the information relayed to the hospital as coherently as possible, and quickly, which is very hard for me to do owing to the extra time I need to process a lot of information before speaking. Thus, my being autistic places roadblocks in the way of being able to spontaneously relay a set of information that was itself relayed to me by word of mouth from the back of my ambulance instead of being right in front of me, allowing time to process the information and mentally prepare the report in advance of calling the hospital like I normally would were I in the back with a patient. I had to mentally prepare a shortened version of the information that would normally be relayed while also trying to drive with lights flashing and sirens blaring.
I managed to give off an acceptable but very quick and short report (I forgot to include some of the most pertinent information because given the circumstances, my processing abilities failed me as I could not retain all the information I had in my head long enough for it to reach my mouth.) While giving the short and marginally adequate report to the hospital, I began veering out of my lane in the middle of a narrow downtown strip, causing me to stop speaking momentarily and get back in my lane, then continue with the report, though the flow of the information I had mentally prepared in a matter of seconds beforehand was lost, resulting in a disjointed flow of spoken communication because I could not simultaneously focus on safe driving with loud sirens hitting my ears constantly in the background and speak into my radio to relay information that I did not have in front of me.
I stopped a bit too quickly on approaching an intersection, causing the paramedics in the back to yell up at me to see what the problem was. The problem was that my brain experienced sensory and information overload, though I blamed it on a fictitious car that failed to see us approaching the intersection. Because I’ve been doing this for over four years now, I’ve developed coping mechanisms to help me through these situations, which admittedly do not occur that frequently, thankfully, like having to drive and give a radio report at the same time. Autistic people need more time to process information, and that means when I need to communicate with others, I cannot spontaneously engage in multiple tasks requiring my strict attention and still adequately communicate what needs to be spoken. For similar reasons, autistic people rely on scripts developed for various social situations owing to the fact that spontaneous communication is nearly impossible for us. In that particular situation, when my brain becomes overloaded, I will exhibit spontaneous twitch-like shaking of my head. It is something I need to do, and it looks odd, which is why I try my best to hide it. Because a lot of effort is expended trying to look as “normal” as possible.
Do I have a “quirky” personality? I’m not sure. I like space and round objects. That sounds weird I guess. But the fact that I have a minor obsession with the solar system and star categorization is not what will land me an autism diagnosis. Sheldon Cooper from The Big Bang Theory is an autistic stereotype, and he does not help us. When we talk about “invisible disability,” it means you cannot see it just by looking at us. Sheldon’s quirky personality is only one side of the story for some autistic people. You cannot immediately see the other side. No, autism diagnoses are not given out like candy on Halloween. I trust that the clinicians doing the diagnosing understand the diagnostic criteria better than non-autistic parents, leaving the problems with the criteria itself aside for now. When someone is diagnosed, there is likely a lot going on that you cannot and will not ever see with your eyes.