Introduction:
Hello, I will go by John Doe. I used to post comments on this blog (often as a soundboard) and formerly used the name Hans. I don’t want to use that name anymore for obvious reasons. (I chose it at random at first though.)
It all began when I took my first job, that my spiral into depression and anxiety began after struggling so much. I researched, lists of symptoms, and could find a limitation or discomfort caused by each one, I became obsessed with my ASD and kept discovering more and more, one thing after another explaining why I struggled with this, why I acted this way, why it was like this growing up, why for this, why for that.
I’ve been learning many lessons, and they’ve come as a big punch each time. This condition has left me needing to learn more, what comes so naturally for others didn’t for me. And I continue to modify myself. I still obsess, not a day goes by where I am not painfully reminded. I wake up and the feeling is there “I have autism, it won’t go away, and help isn’t on the way when it could be.”.
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My first will be short, but the theme is that with ASD, too much has been decided already, so to quote a song “if you are already there, there is nowhere to go”.
There are many claims about what people on the spectrum believe, feel, or experience. In the professional world I have been told “this is what you really feel”. I have seen psychologists, all but one have never given validation or even acknowledged the very existence of my views. The methods were biased, and all have a theme of adhering to some narrative that has spread so far I can’t begin to give it a name or say who is responsible.
An example of being told “what I really think” is the accusation of self hatred if I share I want to not be autistic. It’s been judged (by who anyway?) that since a person’s autism is who they are, that any wish to not be on the spectrum is equal to self hatred. They’ve assumed a person must be their illness before deciding to hate it. (Do they ever ask a person’s own reasons?)
A reasoning like:
Autism is who the person is; not just part of them, but who they are->
If a person says he/she doesn’t want autism, they hate themselves.
I reason they, seeing it not as a disorder, unaware of the real challenges caused directly by it (which they like to blame on society or “comorbidites”, or can be comically oblivious to), cannot accept the simple train of thought for my reason:
These symptoms cause me problems and pain->
autism is the disorder responsible->
I do not wish to be autistic.
Quite a double standard, if a person is in a wheelchair, they are listened to.
The bigger picture is it is already written for you. This is just one example. I am sure even those here who are not autistic, who do scientific work, have to deal with prewritten so called truths which are merely claims. And what they have in common is it must fit with the “narrative” that has been established. Going something like:
Autism cannot be seen as a disorder or a bad thing->
Nothing bad could possibly be involved like birth complications or environment->
Your findings or any articles about them will be tucked away. Be lucky if even a dozen people ever read it, it won’t make it to any front page!
Quite another double standard, I see articles on bodily changes, maternal infection, and exposure to toxins for other disorders whether schizophrenia, Parkinson’s, or Alzheimers, and they are accepted.
Can any of you share what has already been decided for you?
Cortical Chauvinism 
I’m self-identified, so no one has made any assumptions or decisions about me. Considering that I’ve spent over a decade trying to fully understand autism and its impact (or lack of it) on my life, it’s impossible to accept that any outsider could accurately pin me down with only one or a few interviews, or even with tests. Maybe what’s needed much more than trying to educate professionals, is to educate people on the spectrum. Self-awareness, and the ability to discriminate between what is or isn’t part of autism needs to be encouraged. I’m afraid I see very little of that, with most autists making serious errors in comprehension, logic, and views of autism that are filtered through personal biases based almost entirely on emotion.
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Indeed, to add, someone once suggested to me this filtering, or choosing to believe things keeps bad feelings away. I’ve decided not to blame society for not accommodating me and not to inflate my ego with autism pride/supremacism, but that has led to worsening mental health, the anxiety and depression.
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Maybe I’m lucky to have had a strong sense of self, from very early in my life. It wasn’t much of a shelter when I was young and ignorant, but it’s at the core of how I deal with the world. Maybe you’re in a transitional period now, where you’ve given up one thing, but don’t have anything to replace it yet. If so, then self-knowledge is what you need to pursue, consciously and persistently. I imagine it can be very difficult, at the beginning, to depend on your own self-knowledge and insights about the world at large.
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I am very young, I won’t reveal my age. I have a lot of lessons ahead of me, and boy, they will hurt. How old will I be when I can look back and say «why was I so worried?».
I didn’t have the upbringing that built you into your strong self. I need to figure out what to do and where to begin so I can develop it.
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You seem to be in a double bind, as it used to be called, that makes impossible for you to develop more freely. Autism is a continuum of conditions varying enormously in severity from that of my son who cannot speak to yours which is miles away from his and in some ways much nearer a «normal» person that my son.
Resistance to change, lack of insight anosognosia, are all attitudes described not just in autism but in many conditions which for various reasons amount to a denial of the limitations and disturbances even idealization of the disorder. That is usually rather unpleasant to relatives and mates, people with the condition seem to say that they are like blacks: discriminated against. You do not seem to have much of it. On the other hand you say that you are ONLY autistic and you hence deny your own freedom, your own possiblities.
Some people I know amongst families of autistic are unable to enter into reciprocal relations, do not understand jokes or analogies, yet they have kids , make money (one of them a lot, of it) and like going to watch sports and concerts. Besides the genes that make people autistic are not the only ones they have, and there are experiences and environments that can modify what you feel. So do not make yourself or your autism excessively responsable from what happens to you.
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«Resistance to change, lack of insight anosognosia, are all attitudes described not just in autism but in many conditions which for various reasons amount to a denial of the limitations and disturbances even idealization of the disorder. That is usually rather unpleasant to relatives and mates, people with the condition seem to say that they are like blacks: discriminated against. »
Indeed, and there is the special privilege given to Autism to accept this frustrating behavior and celebrate it, just one condition of many. That is the narrative, or conspiracy (as in people conspiring, not like Mole people ) that has been decided, among many things.
«On the other hand you say that you are ONLY autistic and you hence deny your own freedom, your own possiblities.»
True, my profile of symptoms though is very heavy on executive dysfunction and horrible memory, making it hard to sustain myself or be independent. But I am aware enough to be pained by this knowledge, And hey that is another limitation I think of! I just did it again!
It is being not as severe as your son but just having enough capability that I can be somewhat aware of my actions. And I fear how my actions affect others. I am the kind of person who doesn’t do something unless I get the full package. To have kids, I don’t want to be a father unless I can be a good father. That’s an example. I want to be recipricol, I want to laugh at jokes (though when others laugh, such as in a cinema at a funny scene, I do enjoy it) I want to not cause frustration to others unknowingly. And I’ve fallen into inaction and apathy, if I do nothing, nothing can happen to anyone or anything I’ve reason.
«So do not make yourself or your autism excessively responsable from what happens to you.»
I shouldn’t. Yet, the problem is more I am not content the way I am. It’s also what happens to others and what happens to me both. Some people seem content to be those frustrating people, stuck with their gundam collections or obsession with astronomy, too ignorant to know there is better.
Not only actions but perceiving or experiencing things. Two people can taste a dish and find it different. I ponder if I have tasted the dish fully, and some I cannot taste no matter how much I wish I could.
I know there is more to life besides petty things and I’ve been denied it by being unable to experience it even if I perform the actions. I want to want many things (does that sentence make sense?) and be able to engage it in with the full ability to perceive it as a normal person would. Like as simple as laughing at a joke.
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There is also the fear of what will happen when my parents pass, I tell myself, who knows, 1 year, 2 years, 5, 10, 20, maybe something will change. The very functional take for granted this question, and I have enough function to ask it but not enough to never need ask it.
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