Neurodiversity Fatigue: Autism as a Worn Identity

Most readers of this blog know that I am not afraid of expressing my opinions in public.  The subject of Neurodiversity has been no exception.  I have written a good number of blogs on the subject as well as given a large number of lectures. With the passage of time; however, I have noticed a distinct change in the reaction of the audience.  Mention Neurodiversity and they will frown their foreheads and roll up their eyes.  It is as if people are sick and tired of listening about the subject.  This is “Neurodiversity fatigue”.  People are frustrated by talks that bear no impactful results and are overwhelmed by the number of issues that seemingly change from one proponent to another.

A good number of years ago I had the opportunity to write an article for a medical journal based in England.  My article was the result of a study comparing two different populations: autistics and control subjects.  In terms of science, the article was readily accepted.  Unfortunately, I had to spend a large amount of time and effort in a to-and-fro tussle with the reviewers.  They objected to my use of the term “autistic individuals” and wanted me to rephrase my sentences to “individuals with autism”.  According to the reviewers, I was not being sensitive to the values of our patients who could, after all, have many facets to their personality. They could be excellent chefs or chess players. Why limit them as persons by defining them as a medical condition? Indeed, this position lead several national organizations to rename themselves.  Scroll forwards a couple of decades later and the same publishing company will complain if you submit an article using their original terminology.  Now “autistic individual” is the preferred nomenclature.  Autism is now seen as a valuable part of a person’s individuality; a personality trait that should be accepted and praised.

In science, like in society, we seem to move forwards by filling out check boxes.  “Whatever” works if it keeps us free from criticism. Autism Speaks changed its mission/vision statement as a way of acquiescing to Neurodiversity proponents. In their new credo, they would no longer seek a “cure”.  I have little faith in an organization whose mission changes like a weathervane, depending on the direction the strongest wind blows. Autism Speaks never realized that things only get done when you gather momentum; that open debate is the way we grow and move forwards. By cowering away, they only revealed their lack of values. (Note: Those interested in knowing more about my disappointment with Autism Speaks, please click on the link provided)

Personally, I do not discuss Neurodiversity as a way of making the subject palatable to the listener. I do not believe that I will ever change the biases of my listeners. We all look at the word through pink colored glasses. There are 7.4 billion people in the world and there are 7.4 billion different lenses; each person having his or her own unique perspective. I gained my baggage by going through medical school, doing research into autism, and having my first grandchild diagnosed at the severe end of the spectrum. He is syndromic (NGLY1 mutation), nonverbal, and lives in a wheel chair. There is nothing I can do to prevent the bias offered by my personal experiences.  Still, this doesn’t mean that I fail to appreciate the counterpoints offered by Neurodiversity proponents.

A notable quote by David Burns says, “When two people respect each other, the ability to be vulnerable and to reveal hurt feelings can create a powerful emotional connection that is the source of real intimacy and friendship”.  Nowadays, I do not lecture on Neurodiversity to change anybody’s mind, but to create a connection. For the same reason, I do not believe in mandatory Neurodiversity training.  Structured talks run the risk of alienating people, even threatening some of them. Maybe we should learn from Starbuck’s failure at anti-bias training programs.  Such programs help prevent lawsuits but do not lead to lasting changes in the culture of an organization.

So, I will continue moving forwards trying to connect at an emotional level with those that care to listen to me.  I need to do so.  My grandchild, like many other severely affected autistic individuals, wears his identity.  He can’t take himself out of the debate any more than he can stop being autistic. A highly functioning autistic individual can probably go back home and withdraw from his worn identity.  They have comfort zones that offer emotional support and reassurance.  They can wear colored lenses and avoid hyperstimulation in an effort to feel better.  They get reassurance from working with a computer or watching TV.  Although these may be viewed as simple endeavors, my grandson can’t do any of these. He can not dress himself, brush his teeth or comb his hair. There is a certain power in belonging to to a group of higher function autistic individuals and I am happy for them.  By way of contrast, a severely affected autistic individual has no inclusion; he or she never seems to fit into the environment.  They wear autism as a badge, all of the time. With severe autism, it is all about taking baby steps. Their smallest achievement is our greatest success.

Mahatma Ghandi once said that, “The true measure of any society can be found in how it treats its most vulnerable members”.  Right now, severely affected autistic individuals are shun by Neurodiversity proponents who claim autism is the result of a normal variability ingrained in how the brain is wired or in the mixing of the gene pool.  Scientifically, this is an untenable argument; morally, it is a corrupt one.

If we define autism by medical criteria, all people with the diagnosis should be offered the same consideration.  All autistic individuals should be equally respected.  Each autistic individual faces unique struggles.  Being higher or lower functioning autistic does not take the diagnosis away.  I once heard a speaker say “that everybody is selfish, the reality is to what degree, and that is OK”.  In order to move forwards and grow we need to accept things outside of our comfort zone.  Autism runs in a spectrum. Some autistic individuals maintain a high quality of life and need little support while others require frequent and intensive therapy.  It is a simple truth.

Reference

Casanova MF. Autism Updated: Symptoms, Treatments and Controversies. Amazon Publishing, 2019.

Casanova MF. Neurodiversity: Conflict Resolution. Corticalchauvinism.org

Casanova MF. Neurodiversity and Comorbidities. Corticalchauvinism.org

Casanova MF. The Neurodiversity Movement: Lack of Trust. Corticalchauvinism.org

Casanova MF. The historical underpinnings of Neurodiversity: Part 1. Cortical Chauvinism.org

Casanova MF. The historical underpinnings of Neurodiversity: Part 2. Cortical Chauvinism.org

Casanova MF. Steve Silberman and his tribe of Nazi sympathizers. Corticalchauvinism.org

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6 responses to “Neurodiversity Fatigue: Autism as a Worn Identity

  1. Should be very frustrating been a doctor and are unable to resolved issues with their own family. I feel your pain when reading your explanation about this issue. You said your grand kid has severe autism. I have to assume that you catch it in a fly as soon he born or the development of your grand kid was ok the first 16 to 24 month of live. The APGAR was lower than 9?

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  2. Gregorio, I have written many times about my grandson. He was never at ease after being born. Complained and cried, but could not find comfort when picked up and hugged (it made it worse). He seemed to never sleep. Unfortunately, his pediatricians never saw an urgency to our complaints. It was only after he developed seizures that they started paying attention. At the NIH, it was thought that he was a male Rett syndrome. It was only at Duke where a whole genome analysis revealed a mutation that could explain his symptoms. He became the first person described with the mutation. What is frustrating is that nothing that we have come up with has done any difference. He spends most of his time in a wheel chair and in and out of hospitals. My main hope is that research will some day be able to find a treatment, if not for him, for others with the condition. Thank you for your comment.

    Liked by 1 person

  3. autism speaks in their for the record statement claims they abandoned the use of the word cure, because there are many different forms of autism, so no universal cure, but I suspect this was a mistruthful equivocation and it’s likely they changed their mission statement to placate neurodiversity proponents.

    Liked by 1 person

    • I am not sure what is worse for Autism Speaks, being cowards and not standing up for those severely affected, or coming up with pathetic excuses. Not sure that the readers will buy into anything they say or do.

      Like

  4. Pingback: Iluminemos de Azul » El autismo como identidad, desgasta.·

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