Notes for an Autism Researcher on why researchers can not afford to exclude psychological trauma and more.

April 2nd, 2018.

Greetings.

This is partly a response to a conversation I had with a researcher last year.  While I will be addressing this individual directly at certain points (you’ll know who you are if you’re reading),  I have chosen not to address the individual by name as I also want to address a wider audience and it applies to many researchers.  There are insights that almost anyone could learn from.  To some it may be obvious who I am addressing.

Content Warnings: Discussion of Suicide, Trauma, Filicide, etc.   Also Long Winded.  Due to the blog account, Ads are appearing at the bottom of each page before the links to other pages, scroll all the way down to find the next page or click the highlighted text.

This started when the question was asked of Autistic people, what do you want to fix about yourself? I believe you were looking for “actionable targets” for researchers to focus on.

I remarked that while it sounds well intentioned, that without knowledge of psychology or accounting for internalization, such a pursuit could not be fully ethical no matter how good the intentions are.

You responded with the statement, “Identifying challenges and figuring out how to address them is always ethical”.  During the course of the conversation you later conceded that there are “limits” and that you could not be a “one on one counselor”.

Since twitter is a terrible place for communicating anything that requires articulation,  I decided to write this up instead, which has grown well beyond it’s original purpose.  I’m going to assume the “limits” you mentioned were not just relating to your own expertise, but to limitations within the research arena itself. If so, I’m well aware of those limits. For example, that some knowledge isn’t considered necessary in order to conduct ethical research.

While I don’t believe it’s necessary for any researcher to become a one on one counselor, I will say that not having any knowledge in that area has very dire unintended consequences. Unless suicide isn’t viewed as a bad thing.

Before I say anything else, I feel I have no choice but to share where my insights on this come from.

I was born in the early 1980s. Due to having delayed speech and being behind in several ways, I was diagnosed with Autism when I was a child. I wandered into very dangerous areas, including vertically. I had what they considered “repetitive behaviors”, in my opinion that is just a label for something researchers still fail to comprehend. I was a toe walker at first, I couldn’t be potty trained and I would usually refuse to wear clothes because I couldn’t tolerate the textures. When I was forced to be in certain environments for too long, I became self-injurious in the forms of head-banging, hair-ripping and some minor skin-picking. Even when I could speak, I could not communicate my needs or what was happening to me because the only frame of reference I had were Neurotypicals. I was recommended for institutionalization at age 21 because I wasn’t exactly thriving.

For the first few years of life I managed to avoid harmful sensory environments, then my family had to move to a big city and I came to the wrong school. There I was interpreted by the school as “low” functioning and treated according to those low expectations. This meant being treated by school officials as “disposable” and unworthy of educating. Meaning the IDEA act was ignored, IEP was not followed and I was “warehoused” in an empty room for the school day.

Thanks to that experience, which had gradually gotten worse over 4 years; I’ve had PTSD since around age 12 and also had daily thoughts of suicide from that age up until age 31. That experience taught me to think of myself as a burden to my parents, especially my father who is a former NASA scientist. I developed a deep self hatred and a hatred of Autism. Because I viewed school as a place of enlightenment and educators as wise “authorities” on the subject, I believed they had to be right to treat me that way. For years I would wake up kicking or punching from nightmares.

Yes, it sounds bad, that’s not what’s important though. Bad experiences are extremely common. What is important is all the external factors that reinforced what I thought of myself for such a long time.

When Autism Speaks came along, it was like having confirmation of every negative thing I thought of myself. At the time I was oblivious to the fact there were previous generations of Autistic people fighting for their rights. Autism Speaks didn’t acknowledge previous generations and they were the only group I really knew of because of their tremendous marketing power. I viewed them as the ultimate authority because they had bi-partisan political support, Hollywood celebrities and many corporations promoting them. In online spaces I could previously go to, to avoid being Autistic; I now found people talking about Autism, usually in a very negative light.

However, Autism Speaks didn’t just reinforce what I already believed about myself, they caused it to worsen. No longer did I just see myself as a burden to my parents, I saw all Autistic people as a burden costing society. I was beyond Pro-Cure. I would have fully supported Eugenic Mass Abortions as a solution to the Autism “Epidemic”. My suicidal ideations turned into suicide attempts, because now I was a burden to the whole of society and I felt it was my moral duty to society to die. I took comfort in the fact there was a group like that working to get rid of us and would have gladly joined them if I had been asked.

I’m rather thankful that I didn’t try to get involved in advocacy during those years because I could have been the worst nightmare of Self-Advocates, I hated the idea that there could be anything positive about Autism. To me Autism was to blame for everything.

Then again, I rarely communicated beyond my basic needs during those years, I stopped engaging my own mind because I believed mine was inferior. Before I had PTSD I was highly analytical and easily mentally excited about exploring ideas. That simply stopped for nearly 2 decades. In other words, the toxic self-beliefs I acquired from negative experiences had a direct impact on my “functioning” and perceived IQ. IQ tests don’t account for psychological trauma. I certainly wasn’t capable of the level of articulation I am now, nor was I able to communicate my internal state. I was not capable of advocating for myself.

I recently saw a Neuroscience article that seemed to verify that childhood trauma does affect Neural Pathways directly, which isn’t really surprising. It is however significant in that it shows that childhood trauma can affect the brain in a way that could be misinterpreted as “functioning” based on external observation; when in reality there may be underlying psyche issues that can not be observed.
It would also help explain why a lot of treatments for depression are ineffective on some people. Being able to make distinctions like that are going to be vital to the future.

Doctors, Psychiatrists and Counselors were also reinforcers of my negative conditioning, Including doctors I liked.

Why? Because all they had to go on were research journals, including the latest fad diets and treatments to try. They certainly weren’t getting any information from Autistic people. For some reason even in the psyche industry the best way to help was to try to treat Autism. It’s as if all their psyche knowledge only applied to “Normal” people and in order for them to treat you as they would treat anyone else, they first had to try to make you normal so they would know what to do. A lot of bad theories poisoned the Psyche industry IMHO.

I even had a particularly religious doctor recommend an exorcism at one point. Never saw that doctor again.

Since you mentioned you’re not a one on one counselor, I’m going to assume it’s safe to speculate that you think there’s plenty of qualified help out there for issues like this in the form of counseling. Not in my experience, which includes moving a lot and finding new doctors over the years. I was given coping strategies for being Autistic that really amounted to blaming myself for the negative reactions and attitudes of others. In other words, more reinforcement of self-hatred.

Somehow I became consciously aware of all the negative conditioning and how I internalized all the the bad experiences. In a very short amount of time I went from having daily suicidal thoughts to none. I went from barely communicating or being able to articulate much of anything to articulating in great detail. I went from having no self worth and needing validation from others to having complete self worth, needing no one’s validation. I went from having extreme social anxiety to manageable anxiety that doesn’t get in the way of functioning. I went from believing I couldn’t begin to have a life or be considered human until I was cured to knowing better.

It was a very radical change in a very short amount of time and it was not thanks to any treatment or any of my doctors. Years of trying different anti-depressants and other treatments had no effect. My sudden change completely baffled and surprised my doctors, they had no explanation. It’s not as if there was any shortage of PTSD triggers or negative reinforcements either. I was able to map out my own mind and essentially get to know myself where as before I could not. I found there were things I was capable of learning that previously I did not believe I could. I do not consider myself any less Autistic than I was before PTSD.

I will say my best doctor stopped pushing to “fix Autism” after years of slowly realizing there was no positive benefit from such attempts.

I could go into detail about how I managed to change like that, but that isn’t the point of writing this.

I do not believe there is anything a counselor could read that would tell them how to help, the only ways they could even have insight is to either have gone through it themselves and survived or they would have had to spend years around those with psyche issues slowly gaining insights.

The same is generally true of PTSD, the suicide rate among soldiers is very high and wouldn’t be if counseling was all that was needed.

Even if they do posses those rare insights, that’s not really enough. Hypothetically, If I could time travel and try convince my younger self of what I know now, I would fail because it’s something that has to come from within and be experienced internally.

I want to make it clear I am not trying to single you out exclusively, as this is something I encounter with lots of researchers.

Previously I had believed that because you are late diagnosed, have spent time meeting other Autistic people and were wise enough to resign from Autism Speaks; you must already possess a great deal of these insights.

I tried to caution you about reinforcing, which you simply responded with “I’m not reinforcing”.

To be blunt, if a researcher had asked me your question 10 years ago, they would most definitely be reinforcing all of it, including suicidal ideations.

Why? Because the question itself provides validation to feelings of self-hatred by confirming that Autism is to blame. 10 years ago I would have responded with a long list of “actionable targets” that had more to do with the psychological trauma from how I was treated on a regular basis than Autism itself. In other words the actionable targets I would have provided would have been unreliable. I realize that makes things very tricky, considering people tend to doubt us simply because we’re Autistic; that could easily be used against us as well.

In a lot of writing I see coming from researchers, it’s blatantly obvious that there isn’t any consideration for how their work could be psychologically harmful or potentially misused. Even though some researchers have backgrounds in psychology. I would hope that they are simply oblivious to psychology and not operating on bad assumptions. I have to consider that perhaps they don’t think psychology applies to Autistic people or that seeking to make someone like them can’t possibly be harmful in any way. It’s a little too close to being like reading about lab rats.

After all many parents subjected their gay children to conversion therapy out of love, believing conformity was the ultimate way to help when in reality it was a rejection of their humanity and who they are; leading many to suicide. Somehow some researchers and those in the mental health industry learned that lesson.

On the other hand there are modern eugenicists that are troubled by the fact there are multiple generations of genetically deaf people who choose to have deaf children. Those eugenicists clearly could care less about whether people believe they have the right to exist as they are or not.

For that reason I greatly appreciated what Simon Baron-Cohen said to the United Nations last year, acknowledging that researchers have failed Autistic people, that basic human rights have not been met and acknowledging the high suicide rates. Unfortunately I think many researchers refuse to acknowledge that or dismiss Autistic suicide as a trait of Autism without considering any other reason for suicide. I don’t think any have begun to acknowledge the role researchers have played in those suicide numbers. Acknowledging failure is still a remarkable first step.

Those involved with false-equivalent mouse and monkey Autism models don’t seem to think about the possible impact they have. That they’re basically sending the message that your existence is so undesirable that they are willing to experiment on animals to get rid of you. That the amount of money it takes to create those animals is better spent there than on anything that would include you in this world.

Then there’s the devastating effect of the theory of mind had, suggesting we had no empathy; which I don’t think Simon has fully realized yet. In a logical world a theory shouldn’t be harmful. However, when people treat that theory as if it were a proven fact; that opens doors to all kinds of harm.

One bad theory can provide fuel to eugenicists looking to fund their agendas. It can provide credibility to dehumanization and reinforce negative societal attitudes that are already informed by stigma. Worst of all, when professionals act on it, they treat their Autistic patients as if they are unfeeling monsters which leads to deep psychological harm.

I see a lot of Autistic people who were diagnosed later in life remark that they wish they could have been diagnosed earlier so they could have received help. I would say, you might want to think twice about that because you might not be alive now if you had been diagnosed earlier.

Early Diagnosis is a double edged blade. In theory it should mean early access to helpful knowledge and a community of adults that have lived through all the struggles already. Instead, it can mean early abuse you’ll never fully recover from.

Where things tend to go horribly wrong is when an “Expert” not only hands out a diagnosis but doomsday predictions as well. “Your child will likely never do this or that” which immediately becomes a source of fear and despair for parents. That opens opportunities for many forms of abuse. Worse yet is when those “Experts” tell parents that there’s a certain “intensive” therapy that may help. They certainly don’t mention there’s multiple generations of Autistic adults around.

The problem is these “experts” have no business handing out doomsday predictions because they are generally not neuroscientists, nor experts on the human brain, nor experts on trauma and their claims don’t come from looking at the actual brain. These doomsday predictions sometimes cause parents to mourn their children as if they’re dead already; which will most certainly have an impact on quality of life if that mentality is internalized by the child. Children generally don’t know there’s anything wrong or different until people start treating them like it.

The problem with the most promoted “therapy” is that it’s foundation is built on the idea that what goes on in the mind should be treated as a “black box” that is too complex to deal with and to only focus on what they can observe externally. Their claim is that they may be able to make the child indistinguishable from their peers. They focus only on getting the desired reaction to their “stimuli”. Modern neuroscience that could tell them part of the reason their methods are harmful tends to be ignored because that falls into the “black box”. They are not trained to understand Autism nor are they trained to make the distinction between PTSD and Autism. It certainly sounds wonderful when their stated purpose is to help with skills. Skills that could be learned without a traumatic approach.

One of the worst case scenarios is when the parents are trained to administer this therapy and inadvertently become a PTSD trigger to their own child as well as a motivating factor in suicidal ideation. They are essentially trained to ignore their natural parenting instincts and dismiss everything as behavior to be corrected, meaning attempts to communicate will not be noticed. This goes a long ways toward stifling development. If that treatment is internalized by the child, that is deep psychological harm that may take a lifetime to recover from if it isn’t being constantly reinforced by external factors.

So early diagnosis can easily mean being traumatized or indoctrinated at a very early age, not that there aren’t plenty of opportunities for negative experiences without a diagnosis. I find having people judge you as they encounter you preferable to having people pre-judge you based on your label. Even then, if they learn of your label at a later time they still tend to alter their perception in harmful ways; making it more beneficial not to ask for help or consideration in some cases.

A common experience was having people decide I had no credibility once they learned I was Autistic, including after I regained my self-worth. This is why I won’t disclose my status to neighbors or get very close with them, as I’ve had enough bad experiences in the past in different places.

There was one particular incident that took me completely by surprise however. After I learned of the Judge Rotenberg Center I took inspiration from the NOH8 Campaign and spent a few years reaching out to Hollywood celebrities (in person) looking for “human rights allies” that would help expose the facility. There was one actress that seemed to be preaching all the right values, championing the issues of marginalized groups and is also a major supporter of the NOH8 Campaign. At first she seemed very supportive and concerned, then I made the mistake of letting my guard down and disclosing my status. She remarked she knows someone that has Autistic kids and then told me that she thought I had a “delusion of friendship with celebrities”. As if simply knowing my label made her qualified to diagnose me with some other “issue”. Apparently there was no rational reason for an Autistic person to look to celebrities that champion so many other human rights issues for help. I don’t dislike her, but when presuming incompetence is the default reaction; that is quite harmful. It tends to result in exclusion and further marginalization.

That should not be a common experience, but it is. Back to the bigger issues on the next page.

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