Here’s another little tidbit that corresponds with World Autism Awareness Week. It has to do with the woefully inadequate understandings the mainstream of autism, which are both caused by and correlate with missed and denied diagnoses.
The diagnostic criteria for Autism keep changing, over time. In fact, they can vary from country to country (USA uses DSM-V, but there are a number of other tools in use). And from clinician to clinician, depending on their familiarity and how current they are on the research, the likelihood / possibility of being diagnosed can vary in the extreme. You just never know, really, especially in the US, whether you’re going to be really seen and understood for the autistic person you are.
It can be a veritable crap-shoot, and if you end up talking with a clinician who’s more practiced in other areas (as I have been, a number of times), you can end up having your autistic issues conflated with other mental health issues. Borderline personality disorder. Bipolar. Depression. Panic-anxiety. PTSD. ADHD. Trauma residue. Oppositional defiance. You name it, it’s probably been diagnosed (and treated) before autism, any number of times.
Now, this is not to say that none of these ever occur with autism, or that they aren’t actually accurate diagnoses. Perhaps they are. But too often they can be used to screen out autism and discredit the patient / client’s point of view.
One of the elements of the DSM-V Autism diagnostic criteria is that
E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
Although this directive is fairly constrained, still there’s the idea that “disturbances [are] better explained by [another] disability”. And the fact of the matter is, a whole lot of other conditions can — on the surface — present similar to autism… unless the clinician is very familiar with “spectrum-y” symptoms and can tease them out from the haze of conflicting messages and indicators.
Autism is easy to miss, if people don’t know what to look for. Mental health issues and organic/structural conditions such as brain injury (including concussion/ stroke/TIA) or a developmental disorder can “disqualify” someone from an autism diagnosis, offering a more obvious explanation for why someone is behaving the way they are.
Co-occurring conditions may be heightened and the symptoms made all the more intolerable, thanks to the “intense world” of autism, and unless the issues that come with our distinct autistic neurotype are recognized, understood, and addressed, our other conditions will necessarily be further complicated, made more intense, and confront clinicians with a puzzling array of symptoms that just don’t make any sense — or seem made-up (to get attention, obtain drugs, etc.)
Autism-related fatigue can exacerbate all sorts of attentional and post-concussion-related behavioral issues (a tired brain is a cranky brain), possibly resulting in increased medication to offset the symptoms, while the underlying causes continue un-addressed. Sensory issues can repeatedly traumatize a person, spiking their PTSD, and resulting in more (and more) talk therapy designed to uncover supposedly deeply buried memories or emotions that are causing the stress… which in the case of autistic folks can actually exacerbate their stress, no matter how hard they try to comply and “get it right”. On the surface, it may look pretty cut-and-dried to the clinician, but they’re missing a critical substrate that sets the stage for ongoing issues, which may appear intractable.
This can end up confounding treatment and sending an autistic person down an extended medical/clinical “boondoggle”, filled with confusion and ill-chosen pharmaceutical and psychotherapeutic tactics. Ultimately, the autistic patient can end up zombied-out by their meds, or the clinician may give up, considering them a borderline Munchausen case, just looking for attention.
Now, if we consider that autism is a distinct neurotype, rather than a disorder, we can literally get the best of both worlds (so to speak). By understanding the context of autism, the experiential / physiological substrate of our overall condition, we can all factor in co-occurring conditions and gain a deeper understanding of not only how autism affects us, but the other condition(s) we’re dealing with.
Take my migraines, for example. I had daily sickening headaches, some of which had me doubled over in pain, for years and years. And yet, I didn’t fully realize how much they were affecting me until a few years ago. My PCP/GP and other healthcare providers thought it very strange that I would go for years saying, “I never get headaches,” and then suddenly announce that I always had a headache, and I had for years. It was literally not the sort of thing I wanted to think about, so I didn’t. I figured it was just how I was, just how my life was supposed to be. Not until I started talking to other people about it, did I realize that other people didn’t actually have headaches that intense on a daily, moment-by-moment basis.
Now, if you know a thing or two about pain perception and how variable it can be with autism, that may not seem so strange to you. And if you’re familiar with how we can block everything out of our attention when we’re locked onto an attentional target, it makes a lot more sense that I’d be in that situation. Additionally, knowing how … haywire … our sensory detection systems can be, as well as how overwhelming and wide-ranging our sensations can be, it would make sense that the sickening pain of a constant migraine would just blend in with the never-ending stream of unpleasant experiences that make up the background noise of my life.
But if you don’t know about wonky pain-perception, the autistic ability to block out unwanted stimuli, and the cacophony of sensory input a lot of us live with, I’d probably look like an attention-seeking exaggerator who’s just shown up for the drugs.
Of course, when I documented my headaches and presented my providers with the evidence of day after day of ever-present, continually morphing pain, there wasn’t much they could argue with. They could, however, give me strange looks and jump to the conclusion that there was something seriously wrong with me, if I went for years with this level of pain without telling anyone about it. Maybe some long-buried trauma from a horrific childhood… maybe a form of multiple-personality disorder… a recurring dissociative fugue state… better addressed through counseling than medical treatment.
Ultimately, I did get help for my headaches, and it’s been about a year since I last had a constant migraine. Last weekend, I had one for a few days, but it went away, as they now tend to do. But I can’t help but wonder — if my doctors had realized I was autistic and my spectrum-y issues blocked my ability to detect and interpret pain, would they possibly have asked me different questions, and might they possibly have taken a more pro-active approach in helping me identify and treat the conditions that were making my life a lot more complicated than it needed to be?
Personally, I think a working knowledge of autism and its “confounding” factors should be taught to clinicians, and that would clear up a ton of confusion. Also, by taking an inclusive, co-occurring approach that factors in the “substrate” of autism in the overall picture, we can truly appreciate the complexity and richness of the autism neurotype, and even gain greater insight into the intricacies of our co-occurring conditions (even the organic ones). Autism exaggerates a whole lot of sh*t, and we could learn a lot about any number of conditions if we studied the interplay of autism with co-occurring conditions.
- Stroke/concussion/other kinds of brain injury
- A wide range of mental illnesses
- Injury recovery
- [ Insert condition here ]
Rather than using these other conditions to deliberately rule out autism (or simply obscure it), let’s consider that autism might sometimes actually co-occur naturally and form the context for the experience. Diagnosis of autism needn’t be a damning prognosis. It can be a starting point to better understand.
But of course, first you have to be aware that it even exists, in all the forms it does.
And that’s not happening. Yet.