The recent debates on social media about Asperger’s/autism diagnosis weren’t exactly pleasant.
They caused pain for more than a few.
I know that I played a major role in sparking those debates. In a way, I inadvertently opened up old wounds for some and created new ones for others.
I’m so sorry. 😦
I think that I should take some responsibility, then, in helping turn things around.
Let’s transcend that. Let’s show that pain and discomfort who’s boss.
Let’s re-channel that energy toward a constructive goal, or at least a blueprint, a vision.
Maybe something positive will come out of the ashes – a Phoenix rising, if you will.
Pain is one of our greatest motivators, pushing us into action, forcing us to bring about monumental change. We usually end up better off than we were before.
Sewn into the conversation threads were several fine points about the imperfections of the diagnostic process and the difficulties many face when attempting to seek or obtain an official Asperger’s/autism diagnosis, and trying to meld within the autism spectrum community before and after seeking this diagnosis, if diagnosis is sought at all. I gathered up these issues and thought about how we could fix them.
Problem: Asperger’s/autism is still considered a pathology, not an innocent neurological variant. All research done on Asperger’s/autism approaches the condition from the standpoint of pathology; i.e., it’s something “wrong” that needs to be “treated” and “fixed”. All literature (whether research papers or diagnostic criteria) are written by those of a different neurotype, who don’t care to understand us from a neurodiversity point of view, and that literature is written with a sole focus on deficits and impairments. (This is one reason why even the self-diagnosis process can be difficult for many, myself included; in an attempt to seek credible/official sources of information, we’re brow-beat with all of the negativity.)
Solution: More neurodivergent people must enter the science and research fields, and we must speak up and promote the concept of neurodiversity. This is indeed a “must”. We’ll only begin to make serious headway if our own are in positions of power and influence. It is possible that careers may be lost along the way; I’m not ignoring that, nor am I ignoring the fact that it’s easy for me to sit here and say, “yeah–y’all go do that.” Believe me, if I had it to do over again, I would enter either the psychiatry specialty or research arm of healthcare.
Another possible solution is that more neurodivergent people climb their way to positions of power within universities or their boards of directors, and thus, exert incredible influence over how funds are spent. Once there, we can begin to advocate for a shift in the research environment, away from all of the genomics witch-hunt (read: precursor to modern-day eugenics), and toward constructive research that may uncover actual ways to provide actual support systems that we need. This is done by allocating (or reallocating) funding away from some project aims and spearheaded toward others.
Yet another possible solution for more of us to become doctors (medical doctors or PhDs), and thus be able to teach classes. Aspie/autistic people can downright excel as professors; it can be a fantastic career choice for us. Once in the classroom at medical schools (or even other parts of a university), we can make impressions upon impressionable students (not meant to be manipulative) and begin to plant seeds toward a new culture of acceptance of both the autism spectrum itself as well as neurodiversity at large.
A “bonus” to becoming a professor is, you can–and often should–participate in research conduct and publication, so you’d have double-influence: both in teaching and in research. That’s two separate avenues in which to make a difference.
Problem: The medical field itself, like practically any other field except perhaps technology, does not include enough people on the spectrum in provider positions. This translates to a shortage of people who truly understand the autistic and neurodivergent mind, in “gatekeeper” positions that determine our fate. These are people on whom we rely for our official diagnoses and yet, many of them have absolutely no clue.
Solution: We become those doctors, PhDs, and counselors (anyone who can make an autism spectrum diagnosis in your area), and we specialize in autism spectrum assessment/evaluation/diagnosis. Again, if I could go back and choose again, this is probably the direction I would take. It’s only fair that we have a chance of being assessed by someone who might truly understand us on a different level. As mental health professionals, we would likely be much more astute at noticing someone who’s truly on the spectrum. Think about it–a neurotypical mental health professional sees all different types of people and are themselves part of the majority.
On the other hand, someone on the spectrum may have an unusual type of intuition–a “sixth sense” if you will (I’m not the first one to mention it; many seem to have it)–and thus, we might be able to spot someone else with genuine autistic traits much faster and more efficiently. Of course, that wouldn’t substitute for regular standardized assessments; however, it might reduce the numbers of false-positives and false-negatives.
As a medical doctor or PhD, it now becomes possible to attend conferences, leave comments/feedback, and perhaps work your way into one of the continuing education entities as a speaker–a true expert on the subject. Yes, this is a long road, and it takes a hell of a lot work. I won’t sugar-coat that. But it just might wield an amazing amount of power. Just consider the potential impact of one person, and all the worldwide good that one person can do.
Short of that, ActuallyAutistic-led PR campaigns aimed at healthcare providers in, perhaps, the form of short PSA messages or brief printed materials, etc, could gain the neurodiversity movement some ground. Existing self-advocacy associations could be instrumental in this.
Problem: We don’t have nearly enough clinics or practitioners who specialize in–or are familiar with–Asperger’s/autism in adults, in females, or–the double-whammy–adult females.
Solution: Same as above. Also, we need to start talking about it–openly. We start being vocal about it. (This is one reason why those of us self-diagnosed Aspie/autistic people SHOULD blog – as more mental health professionals and neurologists begin to search for autism or do behind-the-scenes research for an incoming or current patient, they may likely stumble upon our blogs and begin to read and become more enlightened. However misguided and inaccurate the recent autism-related TV attention has been, it’s still a start. It plants the word in the minds of the public. And maybe if they visit Mr. Google for answers, our blogs and news articles and books will come up again. And again.
How will this influence the number of clinics available for female/adult diagnostic purposes? Because of supply and demand, the predominant economic model in many areas of the Western world (exclusively-state-run healthcare systems notwithstanding). In many areas, as investors and providers “get wind” that there’s a bubbling interest/demand in a specific field with a current shortage of suppliers, they will race to meet that demand, with a newly-created supply.
Problem: In some areas (especially throughout the US), autism spectrum official assessment and “diagnosis” (in quotes because I’m of the mindset that it’s not a “disorder” that needs “treatment” or “fixing”) is entirely too cumbersome and expensive. The assessment tools are blunt and outdated, and the criteria are often applied too literally (i.e., if we don’t flap our hands or repeat words over and over again while under observation, or we’ve learned to force ourselves to make eye contact, we get missed and denied). It’s a sad state that, from what I’ve read, there isn’t one single test for Asperger’s/autism that is used in conventional settings, but rather, the “diagnosis” is arrived at based on the piecing together of results from several batteries and examinations.
Solution: Professionals need to update their knowledge base, especially those who claim to specialize in autism assessment. Current assessment tools must be updated for current research and gender-neutralized. Professionals’ minds must be opened to consider different Asperger’s/autism “phenotypes”.
New, more efficient and relevant tools must be created. The Minnesota Multi-phasic Personality Inventory (MMPI, a standard comprehensive mental health screening that is widely accepted and commonly used in the psychology and psychiatry fields) was developed by asking people with various mental disorders/illnesses a wide variety of questions, and then listening to–and recording–their answers. Why do we not have anything similar for Asperger’s/autism yet? Why has no one asked us? If a mentally ill patient, who is (by conventional measures) not deemed to be mentally competent (such that what they say is often failed to be taken seriously or believed), and can exert a major influence over the test created to screen for those disorders, then why can’t people on the spectrum (who are generally considered to be of sound mind) also have a similarly significant influence on our own screening tests?
Costs of assessment absolutely must come down, too, and sharply. The “conventional wisdom” believes that autism spectrum conditions are reaching “epidemic” levels (in quotes, because I’m generally skeptical of that claim), and thus, American health insurance policies are not (I think) required to cover/contribute to autism spectrum screening/evaluation. Under the Affordable Care Act, I’m required by law to purchase a health insurance policy that specifically covers at least five or six services that I will never need in my lifetime, due to the fact that I can never become pregnant or have any children (and at nearly age 40, I’m never going to adopt children). Yet, I can’t opt out of that without paying a penalty. And yet, autism screening is rarely–if ever–covered? This has to change, especially with the previously-silent wave of adults realizing that they may be on the spectrum, but often lacking the (usually excessive) funds to pursue an official diagnosis.
An additional solution to the challenge of adult spectrum recognition is to co-screen parents and/or siblings of Aspie/autistic kids. Although this probably won’t help those of us who are adults without kids much, but may help many others with children.
Problem: We have a challenge when it comes to discerning between “pseudo” self-diagnosed Aspie/autistic people and those who are more research-arrived, “genuine” self-diagnosed. Specifically, we lack a lexicon, especially one that conveys ideas/terms/messages completely and efficiently.
Solution: We could consider developing one; “pseudo” is the term I’ve been using, but we don’t necessarily have to settle on that. It would be a good idea, however, to begin to differentiate between the two (extremely divergent) groups, since we’re not the “pseudos” and they’re not us, and we come from completely different angles. One group deserves (in my opinion) acceptance by formally-diagnosed Aspie/autistic people, while the other doesn’t belong in the community (I don’t mean that to sound as snobby as it might come across).
Another (additional, not “instead of”) strategy is that those self-diagnosed Aspie/autistic people who are “genuine” may want to complete a certain amount of research (if they haven’t already) and gather evidence; that way, nobody who is “for real” is going to be accused of being a “pseudo” or bandwagon-hopper. This minimizes the potential hurt feelings and undeserved ostracism that often occurs when all self-diagnosed Aspie/autistic people are lumped together based on the beholder’s own (possibly–and often–biased) previous experiences.
Problem: School employees such as teachers, school counselors, and the like are barely-if-at-all adequately trained in working with Aspie/autistic people. Schools have also cut Gifted & Talented programs across the country in recent decades. Schools have also become overrun with excessively large class sizes, and a higher percentage of children have been diagnosed with behavioral issues, such as hyperactivity and rage. Bullying is almost unprecedented in its levels of frequency and intensity. Taken together, this milieu of crap creates an environment that is extremely hostile and completely incompatible with the ideal learning atmosphere, especially for Aspie/autistic people.
Solution: We definitely need better training for teachers, counselors, and other school-related professionals. These professionals must be licensed to work in their fields (even teachers, at least in the US), and I’m fairly certain that a certain amount of continuing education is required each year in order to be eligible for license renewal. The governing bodies of licensure could easily require a specific number of hours of continuing education for Asperger’s/autism alone. The amount of yearly spectrum-related continuing education may only need to be miniscule–perhaps an hour or two. But it would arm these school employees with the latest relevant information and maybe a more progressive mindset.
I envision a world of Asperger’s/autism acceptance. This would be a world in which screenings are available, reliable, relevant and up-to-date, located close to most population clusters, and reasonably priced. This would be a world in which males and females would receive equal applicable consideration and be equally likely to leave with an accurate diagnosis. This would be a world in which assessment tools are crafted for us, preferably because we had a hand in creating them. This would be a world in which healthcare and educational professionals could be relied upon and trusted to be astute and open-minded.
This would be a world in which we are not dismissed. Not dismissed by healthcare professionals. Not dismissed by our educational institutions. Not dismissed by our fellow Asperger’s/autism spectrum community (given that we’re of the well-researched, carefully-concluded “genuine” type). Not allowed to fall through the cracks of lazy family doctors or mental health specialists. Not allowed to fall through the cracks at school. Not passed up because we’re the wrong gender or age. Not ignored because we don’t fit a stereotype. Not shunned because we lack a piece of paper. Not unfairly lumped in with others with whom we share nothing in common. Not accused of doing/being something we’re not even doing/being. Not left out of scientific fields. Not left out of positions of power, change, influence, transformation, or evolution. Not left without a voice. Not left without our dignity. Not left without our rightful power.