As many of my readers know I was diagnosed with Aspergers/High Functioning Autism as a teen.
What you may not know is that I recently began working as a private tutor (volunteer to negligible pay) specializing in working with my fellow autistic beings. In doing so I fell into a dark and gluey world of labels, procedures, and obscure acronyms.
There are IEPs – that’s plans to “help disadvantaged students acquire needed classroom resources”, IEE‘s – independent evaluations from medically qualified, i.e. people with diplomas in the medical field, experts, PDD-NOS (Pervasive Developmental Disorders – Not Otherwise Specified) – which means Aspies, autists, and people with Rett disorder as specifically specified by the DSM (Diagnostic and Statistical Manual of Mental Disorders), and so on ad infinitum and ad nauseum.
And then there are the parents’ terms “special needs”, “special student” and so on.
And I am getting really rather profoundly sick of it. These labels are dangerous on so many levels.
The first issue is that it makes people things – we have this word “autistic” and we then plug it into all kinds of demonstrably false syllogisms that foster all sorts of weird misconceptions,
- Rain Man was autistic. Dave is autistic. Therefore Dave should behave like Rain Man.
- Autism is rare in females. Elaine is female. Therefore Elaine probably was misdiagnosed.
- Autism is more prevalent in children. Children need help. We must help autistic children. / Autism is rare in adults. Adults do not need help. Adult autists need less help.
And so on…and it really is built right into the language.
I recently ran afoul of this one myself. Twice.
I have been asked as a volunteer to speak to the relevant people at a local elementary school about autism and how to identify autistic students. I was more than willing on the first bit and marginally willing on the second in that basic identification is helpful in that the student then at least has a fair shot at life and the parents a shot at coping.
That’s when the school’s autism expert – a young woman with a master’s degree, I have no idea in what save it was not medicine or neuromedicine or neurology – stepped in and offered, and I quote,
“To help Elaine with the emotional stress of the meeting and to offer help and advice if she has difficulties. It will probably be too scary and overwhelming for her.”
The first syllogistic assumption ran like this.
Autistics are afraid of other people/react badly to them. Elaine is autistic. She is going to react badly to other people.
I don’t actually have fear issues with nor react badly to other people. I sometimes miss social nuances, I occasionally – under high stress become nervous, but I am both aware of these facts and have been learning (formally and informally) how to deal with this as an autistic for my entire adult life. The assumption that I would behave a certain way without knowing me or even meeting me was frankly insulting. I wrote a very professional letter to that effect and I offered an olive branch in the same letter stating that although I had a diagnosis, I was not myself that diagnosis. I am an adult human being who just happens to have Aspergers/HFA.
I also pointed out that all humans – neurotypical (“normal” or NT) or otherwise – were different in various ways. It is impossible that we would not be. We are all of different physiological backgrounds, genetic make ups, creeds, religions and environments. We are not cookie cutter shapes.
So imagine my consternation when this “expert” then informed me that a) she had a degree and thus knew more than me about autism – really, now, I mean do surgeons who amputate limbs then claim to know more about being without a leg than the amputee? – and b) she felt that if I were capable of making such a fine distinction than I must not be autistic.
The syllogism here was, frighteningly, Elaine reacted as an equal. Autistics are not equals. Therefore Elaine is not autistic.
And this from a trained expert! Suddenly, I was something alien to this woman’s training and so I must fall outside of it.
To make it worse, she then having classed me as “normal” – despite four independent diagnoses from two doctors – a neurologist and a DAN doctor, one psychologist specializing in PDD-NOS, and one collegiate research group – she also decided that I was “faking” and thus a liar.
To this minimally trained “expert”, I was now a threat and someone who had to be discredited!
And this is not the first time that I, or other of my adult high functioning friends have had to deal with this issue. I can think of instances where we were viewed as threats, liars, manipulators or something more nebulous but still worse by parents, teachers, and in one instance the group behind a fundraising rally.
Imagine that one, four of us, all HFA or Aspie, went to a rally to show our support to our fellows and the “normals” there asked us to leave all because we –
- were in a public place
- in a crowd
- did not behave exactly like THEIR child or student
- did not conform to a book definition
- or in one case – had friends.
These are the same people who want a cure. They want their children and students to act like us – or ideally like them, but then when we do behave in a socially acceptable way we are suddenly somehow wrong to them and in a scarily fundamental or basic sense.
Those of us who do heal, who do cope, are suddenly outsiders to the very people who claim that we are what they want their children to become.
There are exceptions, of course, like the famous Temple Grandin, but if you read Temple’s books -actually read them – you will find that even she still deals with this on many levels and on a daily basis, at least until she says her rather famous name.
And before you decide I’m bashing her – I’m not, I think she is utterly awesome – you might want to note that she herself has commented at length on this too her – to us – very strange phenomenon.
We all do. It’s ubiquitous and pervasive, maybe as much or more so than the disorder.
It is also worrisome.
I am not sure which holds autists back more, the outright haters who use “autistic” as an insult (but are at least honest about their prejudices – or the “caregivers” and “educators” who have gotten into the field of ABA or autistic training in order to bolster themselves up and who thus do more harm than good by insisting that they – and only -they are allowed to define us or to decide how we should be schooled and raised.
Personally, I hold no ego stake in this. I KNOW that there are people who know more than I do about the actual mechanics and neurology and genetics.genomics of the disease. I know that there are other autists and other NTs who have new ideas, new skills, and new aid to bring to the table. I truly believe everyone can help…so I am infinitely puzzled by those who seem to choose not to, especially in the name (and name only) of doing precisely those things.
It is to me a rather insidious form of evil to do evil in good’s name. And I wish more people were aware of this trend and that something could be done about it.
Then maybe all of us – as equals – not as things, not as labels, not as normal or autist or LD, or NT could actually hold a meaningful conversation and make some rational decisions about autism and what it means for ALL of our futures.