Dear These Types of Doctors…
I am one of you. If I were sitting beside you at a conference, you probably wouldn’t notice me (which suits me just fine), nor would you be likely to remember me afterward, other than that I’m the one who usually fidgets a little too much and has to escape from the crowd between every conference session. I’m also dressed casually for comfort and almost endlessly scribbling notes. Some of my former less-dedicated patients may come to you, complaining that my approach was too much for them, too overwhelming.
Other than that, you’d probably never pick me out of a crowd.
I am one of you. And I need to talk with you for a minute…
…Because I’m also on the Asperger’s/autism spectrum.
I’ve known for about a year now.
I need you to know that those of you wanting and/or claiming to “help”, “support”, or even “treat” Asperger’s/autism have it all wrong.
I understand that your intentions are (usually) genuine. You may have attended seminars on autism and believe you’ve obtained the latest, most progressive, most updated information about the autism spectrum…
…but if you’re still trying to “treat”, “support”, “help”, or otherwise diminish or lessen the effects of autism and make the person more “normal”, then you actually don’t know what you may think you know.
Asperger’s/autism is a permanent human neurological variant. It’s also not a pathology. Just because a behavior or personality trait isn’t well-understood, that doesn’t mean it’s wrong or in need of being fixed.
Aspergian/autistic people don’t need improvement of our neurotype. It may be different, but that does not make it less.
Gluten-free casein-free diets, supplements, lab tests, mitochondrial support, exercises, and heavy metal chelation won’t make an autistic person less autistic. It will make them healthier people (if done correctly), but it won’t separate them from their autism.
The Asperger’s/autism is here to stay.
And that’s not a bad thing! Like I said, Asperger’s/autism is different, not less. It’s not wrong. It’s not a defect. It doesn’t make a person dysfunctional.
What causes dysfunction in Aspergian/autistic people are the same health issues that cause dysfunction in non-autistic people.
We, the people on the Asperger’s/autism spectrum, also have another major hurdle to clear that can cause issues.
It’s not Asperger’s/autism itself. (I can’t say that enough.)
It’s the attitudes and prejudices and lack of compatibility we face from–and living in a world built by and for–non-autistic people every time we step outside our homes or turn on the TV or the computer or pick up our mobile phones to surf news sites and/or social media.
Most of us feel a pang of hopelessness or powerlessness or despair every time we see an Autism Speaks commercial.
It happens every time we see a story on The Mighty written about us but without including our own voices.
It happens every time we come across some story meant to be “inspirational” but is actually a mere reinforcement of the bias against us.
It happens every time we read the headline of yet one more study that boasts the “promise” of a cure that will likely be used indiscriminately on people too young to choose for themselves.
It happens every time a movie like “Vaxxed” or “The Accountant” is produced and released, only reinforcing stereotypes, myths, and misconceptions.
It happens every time we come across the website of some healthcare practitioner who promises the next new Asperger’s/autism “treatment” or “support”, as if we’re diseased.
It happens every time we’re reminded that our neurotype has been pathologized and (wrongly) included in a diagnostic manual for mental disorders.
It happens every time a person responds by saying, “I’m so sorry” when we disclose our Asperger’s/autism status. Or when they slink away and vanish, never to be seen again. Or when someone praises us for living in greater accordance with non-autistic standards (“wow, you’re making much better eye contact today!” Is that supposed to be a compliment? Because I experience extreme discomfort the entire time, which makes me become surprisingly fatigued surprisingly quickly, after which I’m judged for being “antisocial” when I have to politely-but-suddenly excuse myself.)
It happens every time we sit in a conference and hear of one (false) “miracle” story after another about how autism can be “helped”. (Simply calling the reduction of Asperger’s/autism traits a “miracle” is in itself quite devastating.)
It happens every time we stumble across some blog post written by some non-autistic parent who goes on a “poor me” tirade about how hard it is to parent an autistic child. I have news for those people and their supporters: it’s only that tough if the parents themselves lack understanding. This relationship thing goes both ways; the deficits lie on both sides.)
It happens every time we read a story about an autistic person whose voice was never included. Who was never given the chance to express their perspective.
It happens every time we read the description of Asperger’s/autism on a website or in a book and all it can talk about is how “impaired” we are, counting off our deficits and inabilities like roadside mile markers, without so much as a thought given to our potential advantages and greater abilities (did any of you know that we actually had any?)
I’m not saying that people on the Asperger’s/autism spectrum don’t need support of any kind. I’m not saying that we couldn’t be healthier. I’m not saying that we don’t need any help.
I am saying that the majority of us would agree that we generally don’t need help for the Asperger’s/autism itself. We simply need the same personalized medicine approach with which you would take with any other patient.
When facing us, try not to focus on the Asperger’s/autism itself as a problem to be dealt with, because it’s not. I’ve taken the same classes you have. I’ve sat beside you at the same conferences. I’ve read the same studies, and probably more. And I can tell you that it’s not the Asperger’s/autism that’s the boogeyman here. It’s not the culprit.
What it does is create an invisible division between us and the “rest” of the world. But that’s not solely the fault of the Asperger’s/autism, for if we lived in a world in which our neurotype made up the majority of the population, we wouldn’t face the challenges and struggles we do. It was observed–and documented–early on that when allowed to play/be by ourselves, our social “impairments” evaporated.
So it’s not entirely our “fault”; the problems arise when we must go out and about, and interact with a world that doesn’t understand us and makes all kinds of (inaccurate) assumptions about us. That’s when the situation gets dicey.
Because of this, those of us on the Asperger’s/autism spectrum do indeed face unique and additional challenges. The world is too loud, too bright, too intense. Non-autistic people have a different set of social rules and customs that we don’t share, and thus must process through a different part of the brain, a part not inherently designed to fulfill that task.
What most of us generally need is for our Aspergian/autistic neurotype to be taken into consideration but not dwelled upon or targeted.
Speaking for myself as an example of needs, I need stress management. I could use some anxiety supplements. Sure, many of us do react badly to gluten and casein (which is true across the general population as well), so I must remain gluten-free (and I’m mostly casein-free as well). I do have heavy metal burden, so when my body has been properly prepped, I will have those metals removed. I need coaching for time management and dopamine support for my tendency toward irritability. I need a peaceful and quiet place to live. I could benefit from yoga or Qigong or martial arts. I need to be sure to schedule plenty of alone time.
Being Aspergian/autistic gives me a list of certain parameters and focal points. But my Asperger’s/autism itself is not one of those focal points. I’m not looking to lessen my neurotype, even if it were possible. I’m looking to increase my own levels of health and function within my neurotype, just like a non-autistic person would. I’m not seeking to negate my status; I’m seeking to work with it. If I do this successfully, I might even be able to use my neurotype to my advantage.
Whatever you do, please don’t go the “quack” route. Please don’t make claims or promises you can’t deliver. Please don’t claim to “help” or “support” conditions you may not know that much about (and if the above information about the Asperger’s/autism spectrum and the people on it is new information for you, I gently recommend doing some research into the Asperger’s/autistic community).
Also, when forming study groups, roundtable groups, focus groups, or other associations regarding the subject of Asperger’s/autism, and a doctor approaches you and discloses their Aspergian/autistic status and volunteers to be on that group, don’t fail to include them and ignore their follow-up messages.
Yes, this happened to me. And yes, I’m speaking to the particular group made up mostly of “chiropractic neurologists”, although I’m sure there are other medical/healthcare disciplines included in this group.
That smacks of an “About Us, Without Us” vibe, and I’m currently advocating that my own patients (and the public in general) stay away from the doctors involved in groups like this.
If they’re forming a commission on Asperger’s/autism and failing to include a willing doctor who can offer a unique autistic perspective, and who wants to participate and share…then that speaks volumes for the true aims and perception of autism by the doctors in that group.
Thank you for hearing me,
~The Closeted Aspergian/Autistic Doctor Among You
I Cried Today (And It’s a Good Thing) 🙂 ~ August 1, 2016