{ it was really hard for me to write this post. It’s the result of four days of deep thinking, a lot of crying, studying, and fortunately I had three friends who all took me out. Which was a blessing.
But I got this one on paper and never looked back. May contain more mistakes than usual. Feel free to not read it. }
This is not going to be an easy read.
If you re one of those people who believe autism was, is, or ever has been, an objectively identifiable disorder, where the people with whom you felt disconnected in conversations were the only “real” autistic people?
Do yourself a favor and stop reading.
If you re one of those people who thinks it is inappropriate that I study autism in order to understand and heal myself, in the months I have to wait for help?
And would rather see me waiting patiently until “a doctor” comes and determines if I “have autism” or not?
Don’t ever say that to me in person.
And also stop reading.
I wouldn’t want to be the one who makes you lose your faith in the Holy Church of Mental Health.
And I do believe everybody is entitled to their opinion about autism. Although it is exactly this widespread incomplete view of what autism is, where public opinion is that autism in an individual problem, to be solved by the autistic, that is resulting in my high levels of stress.
But like I said:
You’re entitled to your opinion.
Just stop reading.
But to me the “But you’re not sure it is autism, right?” makes it impossible to have an open conversation about why I believe the answer to the problems I have been experiencing the last few years lies in neurodiversity.
Neurodiversity is a neutral label that sees all autistic, ADHD, ADD brains as healthy, and natural variations. And it puts into perspective the “special needs” and limitations of autistics, by stating that all humans have needs.
It’s just that society is directed to the needs of the majority.
And also all people have limitations AND are dependent on other people.
It’s just that for autistics we blame their limitations and dependency on their “condition” and for non-autistics we call it:
Being human.
Needless to say, this entire discussion also goes for physical disabilities as well:
Your level of disability is not related to what you can or cannot do. But to what you can or cannot do, compared to those around you.
In the same way being poor is not related to what the average income worldwide is, but to what your neighbor is spending.
All problems and conditions are contextual.
If all children were born disabled, then from a social perspective, none of them would be disabled. There would be plenty of ways and practical solutions to make everybody participate in society.
It is important to acknowledge the social perspective is much stronger in the way we see mental or physical disability; than the medical perspective.
In my opinion the reason we keep changing the DSM is not because we know more about the disease in the pathological sense, but because society changes and therefor what we see as unwanted behavior changes.
That the definition of autism has broadened since the DSM, causing many more people to be diagnosed, is therefor in my opinion, valid:
It is valid not because there is something medically wrong with all these new “patients”; But because society has become increasingly intolerant towards atypical social behavior.
The neurotypical demands in order to be successful in society have increased. Meaning that even for a normal job and running an average household in the way nobody gets hurt and everybody is taken care of, a skill set and also an interest and a motivation is needed, that greatly exceeds what most of us are capable of.
Us means everybody.
These are the “normal” limitations I was talking about.
But what happens from an autistic perspective is even worse.
Because the higher demands cause a higher need for social interaction. There is a constant need for staying in touch, in tune, with each other, in order to let things go smoothly.
And this is exactly where the autistic, I woudl say “struggles” but that’s not the right word. Among autistics the accuracy of communication equals those among normal, or neurotypical people.
Both groups understand each other perfectly, within the same group.
It’s when the autistics and normal people have to communicate with each other, that communication suffers. With the normal people being the majority everywhere but the IT department?
And with society meanwhile moving forward at dazzling pace?
Autistics are thrown off the wagon left right and center. Except from the IT department.
I have been a yogateacher for 15 years, and part of the reason I am sick, is because that profession, in particular in a crowded market place which yoga has become, requires an exceptional set of neurotypical skills.
Your people skills need to be impeccable in order for your yoga studio to thrive.
Mine weren’t. I have no intrinsic interest in small talk.
Yesterday I went to see Maleficent 2, in which Maleficent practices small talk. Without showing her fangs, also.
She has to go to a dinner with the king and queen, her future son-in-law, but despite the preparation things get awkward right off the bat, because she really can’t do small talk.
“I take it you had no trouble finding the castle?” the King asks.
She stares at him: “Why would I have any trouble finding the castle?”
To me the social demands of teaching yoga felt like constantly finding creative ways to ask (not even answer) the question:
“I take it you had no trouble finding the castle?”
I was so good at it, I think if an autistic tried to take my classes he might not have recognized me as one of them (which they do now!).
But it wasn’t just the social conversation that made me ultimately unsuccessful and unsatisfied teaching it.
My involvement in yoga was never rooted in the same needs or interest as my fellow teachers had. Nor was it similar to the desire of people who are looking for a yoga class.
Right now, I still teach to friends. And even the final years of my studio things had settled and classes were pleasant for everybody.
But especially the first ten years, I practically erased who I was, so I could teach. I was playing I was a yoga teacher. When I was not a yoga teacher.
I was an autistic.
I know this word autistic and the blunt way I say this will bring shivers down the spines of many, but that’s the whole problem here. That’s why the diagnoses is making me sick.
Because the word autism is so triggering, loaded, political even.
Not to the people who are now fighting for our human rights as autistics, for the depathologization of what we have, and who are offering the neutral term NeuroDiversity instead.
But to the people who think of their autistic sibling, which will be dependent on their help for the rest of their life.
To the people who have worked in health care in the 70s and 80s, or who have simply grown up in this era where there were no people with autism that didn’t diagnose as odd or strange, from the outside.
The earliest diagnosis of what has been called Asperger Syndrome, a high-functioning for of autism, were late 80s, but it was based on research Hans Asperger had done in the 30s.
Asperger syndrome went on to become a household diagnosis for about a quarter century.
In 2011 Asperger’s was dropped from the DSM in favor of Autism Spectrum Disorder (ASS); A disorder with a set of characteristics on which the patient could each have an independent score.
“If you know one autistic, you know one autistic.”
Is a phrase often used to describe how varied the spectrum is.
An autistic could be funny and therefor in connection with the world around them, yet communicating through a voice computer because he or she can’t speak.
Lots of autistics are social, and when they’re not mute, they can easily become unrecognizable as being autistic. This has lead to a counter movement that wants to work with a more strict diagnostic tool, and not the loose settings it has now. It is against pathologizing these sometimes called “high-functioning” autistics, and basically advocates going back to the stricter pre-80s definition.
The time between Hans Asperger’s research, and the 80s when it was brushed off and the new group of children was brought in, and labeled Asperger’s.
So there is a “medical model movement” who thinks it’s time to go back to the 70s.
There is the neurodiversity movement, who wants to drop stigma of all neurological conditions and promotes acceptance within society of what we now call autism (in all its forms), ADHD or ADD.
There are The People Formerly Known As Aspergers, who have been “brought up” with the idea that their condition is something completely different, and that they can have a place in society. As opposed to people with autism.
This is why Aspergers have been called Super Autistics: they used to have sort of an elite status. The good news is that it has worked, in the sense that you can see that these people have become the most successful of the bunch.
They are proof that if you tell people:
“What you have could work out great if you play your cards right,” it just might.
The price of this was that those with Asperger Syndrom who have not been able to become financially independent (usually because their interest was not building their own computers) could suffer from feeling they underachieved.
But even in everyday language, an Asperger’s diagnoses almost equals “nothing wrong”. If I had said to people:
“I think I might have Asperger’s”
No one would have drawn back in shock and have asked:
“Noooo! But really? I mean, you re not sure right?”
Asperger’s was no biggie, was the word on the street.
But now that the diagnosis Asperger’s no longer exists, and the “high-functioning” autistics formerly known as Asperger’s are closing the ranks with their fellow autistics, including the non-speakers?
The tables have turned.
“We”, the “high-functioning” autistics who refuse to give themselves the more likable, less political label “Asperger’s” in order to be accepted and successful-
we are now in the line of fire.
The normal people want us (the autistics they like hanging out with) to stop calling ourselves autistics, because it makes them freak out.
The psychologists want to stop diagnosing us as autistics, because they feel the latest version of the DSM contains a watered down definition.
The therapists and lineages within psychology who are convinced we are ill and disturbed and that the neurodiversity people are delusional and that we, modern day mutants, need to be cured?
They don’t want us smart sassy badass autistics “in there” (the pool of autistics) either, because we are not going down without a fight and we are the ones defying their paradigm and ultimately… ultimately….
Suffice to say I understand why 50% of the X-Men can no longer be bothered defending hostile humanity who has done them nothing but harm, and chose to be villains instead.
If I had the energy for this, I would become a neurodiversity fighter!
But I am absolutely exhausted, from doing all my autism research. I tried to find the truth, and the key take-aways for autistic people.
And I found those too.
A lovely community where we understand each other.
But just like The Moren where Maleficent lives, it is under threat. Which makes everyone who wants to live there under threat.
The thought of being under siege just because I have a medical diagnosis that is so political, is what is wearing me out. I just can’t go on.
Not because I think I m not autistic.
But because it opens such a can of social injustice, it would be a life’s work straightening that out.
I myself am developing anxiety around the word autism, when I was entirely neutral a few months ago. I was even very happy that, together with a few specialists who helped me figuring out a starting point, autism had surfaced as most likely explanation.
I was convinced it would be helping me so very much to investigate this further.
Instead it sucked me into a warzone.
Just a few months ago, I though I was suffering from burnout and a midlife crisis, and now I realize I have the choice between getting proper diagnosis, and with that the chances of the best treatment;
Or refusing diagnosis and stay out of the battle and limit my access to services.
The word autism is so triggering to everybody. I m already losing friends not because I have autism, but because I write about my process.
I lose about one friend a month.
And I m already decreasing my chances on the workplace because I openly share undiscovered autism as part of my explanation why I have stopped my studio.
This is important:
To me – an undiagnosed autistic- telling the truth is extremely important.
The neurotypical or normal desire that I please stop writing about my mental health and “not wake the dogs” “until it is certain”, is so incredibly sad to me.
I understand it.
They want protect me from the bad in this world.
From the people who would judge me for my autism.
But they are like people who are telling you you shouldn’t wear short skirts because there are bad people in the world.
That’s why I lose so many friends. Among other reasons.
But because I can ONLY be open and honest? This leaves me no choice but to erase the entire option of getting an autism diagnosis altogether. The only way to ignore I m autistic, is by reprogramming my own mind. Forget I have it, and honestly say, share, admit:
“Yes, I toyed with the thought of getting my diagnoses during a difficult period of my life. But I didn’t.”
That’s all I can afford.
Popular opinion will remain, at least for a few more decades, that “real” autism is something you can notice and that should be prevented. When in reality, autism could not be seen it at least 50% of the cases.
Right from the start.
Hans Asperger studied two groups of children. Two types.
The second group (in the article I read they were called group B) were notably different. What they said didn’t make sense (to Hans) and they were not particularly intelligent or gifted (to Hans).
They were in their own little world and it was unclear what they were doing there (to Hans).
But the first group were boys, in the research they were called group A, were highly intelligent. They constantly got into trouble at school and with their parents, because they were simply a lot smarter than everybody else.
Their disconnection from the world around them was so they could stay in their own little world and come up with bright and original ideas.
And occasionally they would come out, just to gaslight Hans.
“Why do you do that?!” he would yell.
And the Group B boy, the little professors as Hans called them, would smile and say:
“I do it, because you re so funny when you freak out over it.”
Both Group A and Group B had what we now call autism. And what Hans called autism right then, from the start. The capacity from half of all people with autism to gaslight the people who study them, because they are a lot smarter, has been there in the 30s.
And it still is there today.
Because ultimately disorders are not a medical; They are social.
Both the ones living in their own world without us knowing why, as well as the ones encountering severe problems in the real world, but occasionally coming out to tease them:
We are all autistic people.
And we are allowed to present ourselves as such.
But the past few months have been absolutely horrific to me, from a personal perspective. Like I said, every time I write about my mental health and autism, I lose friends, and relationships become tensed because I refuse help in the form of pity. Just like those little professors I don’t want any help. I want to talk about common interests and have fun.
Just like those little boys, I am fighting for my independence.
And the moment I go into testing and put my faith in psychology to help me, I will get That Label Everybody Dreads.
And if I don’t want the label, but do want to appear if I comply. I would probably be able to come out clean and unautistic. It would feel like a fun challenge, to come out as unautistic.
Just like those little boys who had fun in ruining Hans Asperger’s testing results.
Some say the reason the definition of autism has become watered down, is because high intelligence has the same traits as autism/ Asperger. And there has not been done any research that can separate the two.
In that sense the neurodiversity movement should really go all in, and include highly intelligent from the start, as a neurological variation just like all the others.
But it will be without me.
I will stay with the few friends I have left, and rebuild my life without ever knowing want went wrong. And playing with them, in the way we always have.
By creating fantasy worlds.
Creating our own language.
And using film quotes in casual conversation.
And I will propose a new greeting to them. And I encourage you to try out how this would feel for you. It’s the one I took from Maleficent.
How about every time you meet a good friend, one of you says:
“I take it you didn’t have any problem finding the castle?”
And the other raises his or her eyebrows, and offers a puzzled smile:
“Why would I have any trouble finding the castle?”
That would be a world worth living in.
~Lauren
An unexamined life is not worth living
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This is a letter to my creativity coach Sara
LS Harteveld 