Depathologizing Asperger’s / autism ~ Out-voicing the autism ‘experts’

Ever since the advent of the internet and the proliferation of websites of information on just about any topic imaginable, it seems as though Everyone’s An Expert.

This seems to apply especially to the Asperger’s/autism spectrum.

These self-proclaimed “experts” generally fall into one (or more) of four camps:

• The majority of (hint: not all) scientific researchers and medical/mental health professionals who study or work with people on the autism spectrum, and/or
• The subset of (hint: not all) parents, caregivers, and educators of autistic people (the specific warrior/martyr-like subset being referred to from here on as the Autism Moms/Dads/Parents(TM) as described here (link to “The ‘BS’ Fairy’ blog; Rated R for language)
• The subset of (hint: not all) advocacy organizations whose “advocacy” is mostly unproductive and undesired by Asperger’s/autistic people ourselves
• The media outlets (be they internet portals of “inspiration p*rn”, Hollywood movies, headline news, etc) reporting on stories involving Asperger’s/autistic people and/or making cultural references to Asperger’s/autism itself

Most of the informational websites about Asperger’s/autism are built and written by those people; our voices are rarely heard.  Our stories are rarely told by us.

Regardless of the lack of true insight, many of these people claim to be Asperger’s/autism “experts”, while ignoring the attempts made by autistic people to tell their own stories.

Fewer people attempt to seek out the source of the information they find on those websites.  Sometimes the source is obvious; it’s either quoted from a respected source, or perhaps it’s a personal experience with an interaction with an autistic person.

Either of these is perfectly fine…

…as long as the source author themselves know what they’re looking at.

Frequently, in the case of Asperger’s/autism, they don’t.

This is because that person, the (sometimes self-appointed) “expert” writing the story is rarely autistic themselves.

I’m not making the hard statement that a non-autistic person can’t be an expert on the subject of autism.

I am saying that many of those who claim to be such experts rarely actually are.  They may believe they know what they’re seeing, and thus, they may believe they know what they’re talking about, but they may not–and in fact, they often don’t–have the first fluorescent blue clue.

One needs to have that first clue in order to think of calling themselves an expert.  Getting that first clue doesn’t come from earning a fancy degree, putting on a white coat, and sitting behind a clipboard, merely writing down what they think they see.  Nor does it come from simply giving birth to–or spending time around–an autistic child/person.

It comes from either experiencing Asperger’s/autism firsthand (and probably interacting with other autistic people as well) or interacting with many of us a lot, and taking seriously what we say.  Above all, it comes from entering the encounter with a open mind, a kind and judgment-free heart, a neutral hypothesis (if any at all), open eyes and ears, and a willingness to step outside of the box.

It’s absolutely necessary to leave all preconceived notions, labels, and assumptions (especially those regarding pathology) at the door.

It’s absolutely necessary to discard premature conclusions.

It’s absolutely necessary to consider the unique individual in front of you, and to remember that they’re a whole person, just as they are.

It’s absolutely necessary to put away the guessing games, take the long view, and ask more questions than you make statements.

It’s absolutely necessary to withhold judgment and maintain a flexible lens.

I would like to make a request…

That all “experts” who are themselves non-autistic, who have not fulfilled the above prerequisites, stop claiming to be authorities on the subject of Asperger’s/autism.  If they haven’t actually sought out our perspectives and listened to what we’ve said, then they’re not an expert.

However, we are.  Please, step down from the mic and let us step up to the podium and take it.  Many of us have plenty to say, write, or draw; many of us are hopping up and down with the desire to express ourselves in our various forms, in a time, place, and method in which we can be heard.

We often find it difficult to shout over the people shouting over us.  We often find it hard to be heard over the chaotic and doomsday din of the “official” sources of “information” out there.  We don’t have billions of dollars for advertising/promotional campaigns or search engine optimization (SEO) for our own blogs and websites.

So I’m asking for a voluntary effort.  I could be asking too much, but I hope not, because the request is a logical and reasonable one.

I can immediately think of a few entities in which this request would/will be too tall.  The puzzle piece organizations would stand to lose way too much by going silent or handing over their microphone to us and giving us the floor, even temporarily.

The martyr-like Autism Mom/Dad(TM) segment of parents of autistic children (not to be confused with the majority of parents of autistic children who are pretty cool) would lose the grip they maintain on attention focused on them and the sympathy and back-patting that comes with it.

The scientific researchers and medical and mental health professionals (again, referring to the ones who remain narrow-minded) would have to admit that they don’t know everything after all.  They would be faced with public knowledge that they had been wrong all these years.  It takes a lassoing of the ego to admit one’s mistakes; the ego of those to whom this post applies is far too inflated and far too fragile.  They don’t dare Go There.

The medical/mental health professionals would also have to admit that many of us would be just fine without being subjected to their intensive treatments.  And those who aren’t exactly “people” people would have to learn and adopt a whole new paradigm, one in which practitioner and patron create a more egalitarian partnership.

It’s not in the best interest of any of those groups to fall silent and give us the floor, either; what many of us have to say would generally defeat their purpose and detract from their spotlight.  They would no longer be the conventionally-respected gatekeepers of information, authority, and thus, power.

The first rule of obtaining and maintaining power is to discredit your opponent.  And unfortunately, the current setup pits people against each other, who might–and should–otherwise be allies.

Classifying Asperger’s/autism as a disorder, especially a mental one (by continuing to include it in the Diagnostic Manual of Mental Disorders), accomplishes that discreditation.

The gatekeepers involved would have to adopt and adapt to a complete shift in thought and belief.  They would have to alter perception pretty much entirely.

They would have to admit that traits they currently deem to be pathological “symptoms” are simply differences they don’t understand.

That might be too much for some to stomach.  (And just who is dependent upon doing the same things over and over again, with great distress in response to change, I’d like to know?  Oh, that’s supposed to be us?  I wouldn’t have known.  Seems a little projectionist to me.)

But what these groups would “lose” really wasn’t theirs to gain in the first place; it was taken (stolen?) from its rightful owners: us–the people on the Asperger’s/autism spectrum ourselves.

These folks began talking over us long before we had even been born.  And their descendants and disciples now carry that original torch.

I’m glad to see that we’re taking that torch back, whether they want to give it up or not.

I’m encouraged to see us form grassroots movements of our own in opposition to the rhetoric.

I’m happy that many of us are increasingly content with ourselves and our neurotype.

I’m overjoyed to be able to find positive, firsthand accounts of Asperger’s/autism, written by people on the spectrum ourselves.

I’m comforted by the increasing instance of people coming out as Aspergian/autistic, being met with increasingly benign, no-big-deal responses.

These are all steps in an awesome direction, toward a much brighter collective future and a generally much-improved life.

It’s time to take on the world.

I hope the martyr-like Autism Parents(TM), the research scientists, the medical and mental health professionals, and the puzzle piece organizations can keep up!

(Well, maybe not the last one.) 😉

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