The Evolution of NeuroDiagnostics
I just turned forty. For the duration of my childhood, especially having grown up in a rural area years behind the diagnostic awareness of major metropolitan areas, what it meant to be autistic was likely not even autism at all.
Autism was a diagnostic label given to people with what, in reflection, were genetic disorders characterized by severe intellectual disability, motor impairment, and facial or body abnormalities.
I only interacted with one person in my childhood who was diagnosed with autism. She was in a wheelchair, could not speak, had very small arms and hands that were drawn up into her body, and had very atypical facial features that prevented her from being able to even close her mouth.
While she could have been autistic, it was likely that her very pronounced disability was something else. At least in my area, autism was mostly an umbrella term to be a euphemism of profound disability.
At the same time, there were members of my family who would have met criteria for “level 3” (high support needs) autism had they been evaluated today, but were nowhere near the threshold of “disabled” needed to be given an autism diagnosis in the early 80s. Rarely, someone may have been diagnosed with ADHD, selective mutism, learning disorder (unspecified), or dyslexia.
Author’s note: this article was originally published on PsychCentral, which was sold to another corporation. It has been unpublished there to be published here.
40 Years in the Desert
It’s only now, in 2021, that understanding and awareness of autism is starting to become more widespread. Wellness checks at early childhood doctor appointments look for differences in developmental milestones as they correlate with age, so young children are rarely missed.
However, the older an autistic person becomes, the more unique the constellation of traits becomes. A person’s experiences, upbringing, and circumstances will bear heavily on the presentation of criteria.
Adults, though they may have struggled tremendously in school, have often adapted to their neurological ability profile, having the freedom to troubleshoot self-accommodations for weaknesses and playing to their innate strengths– a luxury not afforded to autistics in neuronormative academic institutions.
Autism carries a heavy stigma. It will still take time for the general population to catch up to what it truly means to be autistic and to stop seeing autism as a diagnostic death sentence, but there is no excuse for the mental health field to be so behind that most practitioners have no idea what autism means, that an autistic community exists, or even what neurodiversity means.
All the applicable ethics codes require that diagnosticians will practice within the bounds of competence, but unless they have an understanding of how autism presents in adults, they are not meeting their ethical duty to clients.
The prevalence of autism, at around 1.7% of the population, is about the same as the percentage of people with red hair, the percentage of people with green eyes, and slightly higher than the percentage of people with borderline personality disorder (BPD). Autism is more prevalent than bipolar disorder.
So why do so many diagnosticians have no idea what autism means for adults– and especially in women and nonbinary people?
Neurophobia is defined as the “inability to apply […] basic science knowledge to clinical practice leading to paralysis of thinking or action” (Jozfowicz, 1994).
Regardless of their area(s) of clinical expertise, I have never met a psychiatrist or psychologist who didn’t have the confidence to be able to identify bipolar disorder or personality disorders and diagnose them in adults, yet there are very few who have ever identified or diagnosed a single adult with autism.
It is possible to look at behaviors in a vacuum and not consider the neurodevelopmental cause for those behaviors, as if all brains are created equal, but that contributes to life-threatening negligence when diagnosticians assume that there is a social motivation (often manipulation or attention-seeking) or selfish motives for what is neurological in origin.
Research has demonstrated that thin-slice judgements after just seconds of interaction with an autistic person were enough to garner negative impressions from non-autistic peers. Sasson, Faso, Nugent, Lovell, Kennedy, and Grossman (2017) looked at three different studies where impressions about autistic people were that non-autistic people wouldn’t want to converse with autistics, sit next to them in a public place, or even live in the same neighborhoods.
From the study:
These patterns are remarkably robust, occur within seconds, do not change with increased exposure, and persist across both child and adult age groups. However, these biases disappear when impressions are based on conversational content lacking audio-visual cues, suggesting that style, not substance, drives negative impressions of ASD.
Non-autistic people immediately react to autistic body language and communication style with distrust– to the extent that they don’t want to live in their neighborhoods. This distrust, then, likely contributes to negative biases from diagnosticians.
Autistic self-reports are potentially regarded as unreliable. Their social difficulties are regarded as a lack of perspective-taking or taking responsibility. Their inability to respond (in socially expected ways) to non-verbal or implied body language, tone, and figurative language is regarded as antagonism; conversely, non-autistic people believe that autistic communication is loaded with implied meaning that autistic people do not intend.
Clinicians also don’t realize that many autistic adults self-harm. From interactions with the autistic community, it’s clear that many autistic adults– myself include– were initially misdiagnosed with a combination of borderline personality disorder, bipolar disorder, PTSD, major depressive disorder, general anxiety disorder, social anxiety disorder, obsessive compulsive disorder, or other personality and mood disorders because they had self-harmed.
Really, anything and everything except for autism.
If clinicians only look at behaviors, and they feel negatively about a client, their biases are likely to be reinforced and confirmed by misdiagnosing autistics with conditions that are characterized by deviant or anti-social (purposefully going against social norms for the sake of causing problems) behaviors.
Diagnosticians have to consider the impact of a diagnosis on a client. Will the knowledge of the diagnosis cause harm to the client? Will a diagnosis harm someone’s career? Will negative stigma cause more problems than being undiagnosed or diagnosed with something else that also “fits”– at least from a surface-understanding of behaviors?
Many clinicians have the same negative perceptions about autism as the rest of society– they envisage adult autism as someone wearing a suit jacket and lime green sweatpants, rocking back and forth spouting out mathematical equations, only breaking their hollow gaze to bark at a passing train.
Or, they think of Sheldon from the show, Big Bang Theory. Indeed, I have friends who were actually told by clinicians that they weren’t enough like Sheldon to be diagnosed. Other things clinicians have told my friends or written in reports about why they can’t be autistic:
I could tell by the way you walked in here that you weren’t autistic.
You’re not autistic. You bathe.
You’re not autistic. You smiled at me and laughed at my jokes.
You can’t be autistic. You’re very likeable and relatable.
Client is well-dressed and made eye contact.
Patient’s voice had a tonal quality.
Patient reciprocated socially normative greetings.
Diagnosticians have work to do to unpack their ableist assumptions and dehumanizing stereotypes. If they believe that someone has to be unlikable, a mathematical savant, unkempt, monotone, and humorless, of course they are going to miss autistic diagnoses.
A Human Rights Crisis
Remember that thin-slice judgement research referenced earlier? The one wherein people found autistics so unlikable on first impression that they didn’t even want to be in the same neighborhood with them? Well, that translates to a lifetime of invisible gaslighting and abuse for autistics.
In fact, research is clear that more than half of autistic adults have or have experienced PTSD, and that the symptoms of PTSD and autism overlap (Hauruvi-Lamdan, Horesh, & Golan, 2018; Rumball, Happé, & Grey, 2020).
Cassidy, et al., 2010, published a study in which 367 recently-diagnosed adult autistics were interviewed. A staggering 66%– two-thirds– had engaged in frequent suicidal ideation and 35% had made plans or attempts to end their lives.
And, of course they had. I’m surprised that number isn’t higher.
Within the last 2 years, I’ve lost five friends to suicide or possible-suicide by overdose. I have scars from my own attempts.
Being so at-odds with society is difficult to survive, and especially so when it’s done in the dark about your own neurotype. It’s traumatic to not have those differences acknowledged and validated. It’s hard to get a clinician to believe that people — teachers, parents, co-workers, etc.– all dislike you for no apparent reason.
It’s hard to get clinicians to believe that you are not manipulative when they won’t take your words at face value. It’s hard for clinicians, employers, partners, parents, etc. to understand why you can’t multi-task at simple jobs when you are otherwise so capable.
It’s hard, period.
It’s time for clinicians to update their skill sets and knowledge base before more lives are lost as a result of neurophobic negligence.
Why Adult Autistics Aren’t Being Diagnosed: A human rights crisis
Humanizing the DSM Diagnosis for Autism
Downloadable E-book: A Guide to Understanding the Autistic Mind
Cassidy, S., Bradley, P., Robinson, J., Allison, C., Mchugh, M., & Baron-Cohen, S. (2014). Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: A clinical cohort study. The Lancet Psychiatry, 1(2), 142–147. doi:10.1016/s2215-0366(14)70248–2
Haruvi-Lamdan, N., Horesh, D., & Golan, O. (2018). PTSD and autism spectrum disorder: Co-morbidity, gaps in research, and potential shared mechanisms. Psychological Trauma: Theory, Research, Practice, and Policy, 10(3), 290–299.
Jozefowicz, R.F. (1994) Neurophobia: The Fear of Neurology Among Medical Students. Archives of Neurology. 51(4):328–329.
Rumball F, Happé F, Grey N. (2020) Experience of Trauma and PTSD Symptoms in Autistic Adults: Risk of PTSD Development Following DSM-5 and Non-DSM-5 Traumatic Life Events. Autism Research. 2020;10.1002/aur.2306. doi:10.1002/aur.2306
Sasson, N. J., Faso, D. J., Nugent, J., Lovell, S., Kennedy, D. P., & Grossman, R. B. (2017). Neurotypical Peers are Less Willing to Interact with Those with Autism based on Thin Slice Judgments. Scientific Reports, (7)40700.
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Terra, thanks so much for writing this and publishing it here. I recently retired from a full-time job, and since retiring, I noticed that I know longer feel this panicky falling feeling that had been haunting me for the past decade of “I don’t know who I am.” Since I’ve been retired, I know who I am. Unpacking this, I realized that I’d spent much of the past decade in a state of dissociation, caused mostly by the social exclusion and rejection combined with the stress of executive functioning, sensory processing, and social communication processing. While trying to soldier on, I fear I came close to experiencing lasting harm. I’m grateful that the pandemic pushed me to retire early. Now I have a chance to heal. Your posts have been an important part of honoring and recognizing my experience. I wish for healing for all of us who have struggled through the gaslighting and a lifetime of social rejection.
so well stated. thank you!
I was literally told that I could not be an Asperger’s/Autism patient by a psychiatrist BECAUSE MY TODDLER CHILD WAS FUSSING IN THEIR STROLLER AFTER JUST WAKING UP AND I RESPONDED TO THEM. It took me almost six years to try to get an evaluation.
I absolutely LOVE this article, thank you so much for sharing. I feel doubly validated and outraged at the gap in understanding us autistic folk. Have shared far and wide.
“From interactions with the autistic community, it’s clear that many autistic adults– myself include– were initially misdiagnosed with a combination of borderline personality disorder, bipolar disorder, PTSD, major depressive disorder, general anxiety disorder, social anxiety disorder, obsessive compulsive disorder, or other personality and mood disorders because they had self-harmed.” This. This happened to me except the person who mis-diagnosed me was my LCSW former-fiance. I have a late life autism diagnosis and there’s no doubt about that. Yet my former fiancé decided it wasn’t autism and instead personality disorder and unresolved trauma caused by god knows what. I was a happy and wet-adjusted autistic adult. I wasn’t even diagnosed autistic due to a crisis or anything. I was diagnosed simply because of curiosity and to settle an argument with my former fiancé. I have much to unpack and haven’t clue how to recover from what certainly feels like PTSD now.
If can, attach yourself to an autistic community first before going for diagnosis. So that you go with validation and any doctor who is against it is more accountable to defend their reasoning.
I was diagnosed with bipolar1 but had thought I was on spectrum for awhile beforehand. I have basically hated being alive ever since I left for college simply because of societys harsh expectations of me and adult life’s troubles. It has burnt me out, destroyed me, because I am autistic, and instead just come across as a sloppy, clumsy, fidgety, irritable and emotional girl. Considering sui*ide since I will probably never get a diagnosis. Maybe when I’m 30. Or 40. How many more decades of being told I’m broken. It’s already a 20s completely wasted trying to know what has been ‘wrong’ with me. Nope….just broken. Bipolar broken for all my mental anguish trying to communicate.