This post was inspired by an article written by Rachel Cohen-Rottenberg and published on The Commons. More of Rachel’s writing can be found on her blog, Asperger Journeys.
Rachel’s website includes a list of 100 Myths about Autism, and her article focuses on ten of those. After finishing the article, I found my thoughts lingering on myths #2 and #10.
Myth #2: Autism is a mental illness.
Autism is not a psychological disorder. It is a neurological condition in which the brain and nervous system are highly sensitive to sensory stimuli.
When the average person takes in sensory information from the environment, he or she intuitively filters it, prioritizes it, and responds in a purposeful way. For autistic people, sensory processing works very differently. The information comes in full force, without a great deal of filtering.
For example, I have almost no ability to filter auditory information. Anywhere I go, I hear a cacophony of sounds and voices, all at the same high volume. It is difficult for me to have a conversation with a lot of sound in the background, because for me, there is very little background. Any loud, crowded, unstructured situation causes me nearly immediate sensory overload.
I also experience the visual world very intensely. I am constantly scanning my environment, looking at numerous details, and attempting to order them into some sort of pattern. Because the visual world constantly changes, my ordering process never stops. It’s only recently that I’ve realized that most people do not experience the visual world with the same intensity that I do.
– Rachel Cohen-Rottenberg
I have been misdiagnosed throughout my life. All or most of these diagnoses were mental illnesses (i.e. shizophrenia, depression, anxiety, etc.). No idea if these were also correct to some degree or other, but finding out what is really going on has been a pretty big thing for me.
Treatment is the same for most of these things, so there were no major changes as far as meds go, but finding other people like me has been a major event in my life. I feel much less alone, have been exposed to massive amounts of information and resources, and finally have a name for “what is wrong with me”. Very helpful when telling other people. Much better than what I used to tell them: “My brain doesn’t work right”, “I hear screaming in my head”, “I don’t think right”, “I am crazy”.
I am not really sure how much it matters to other people whether it is psychological or neurological. Not even sure it matters to me, except that I am a stickler for accuracy. Honestly, I don’t really know what the difference is between psychological and neurological conditions affecting the brain. My guess is that for psychological things, it is an outside factor affecting the way the brain works, and for neurological things, it is the brain itself causing the ‘problem’. Any of you docs or social workers out there know the answer?
Rachel’s description of sensory processing is exactly the same as the way I experience it. I have personally never found the words to describe it so well, but she and many other people have, allowing me to share this description with others in a way that I could not before.
I think all of these first-hand descriptions and corroborations are very important in this time where autism awareness is growing by leaps and bounds, thanks to the internet and other media. The autistic spectrum is large and the range of people’s experiences varies greatly, but the amount of similarities in thought processes, perception, and experience is definitely worth documenting!
Myth #10: Autism is a disease in need of a cure.
This statement is the focus of passionate debate.
Like many others, I do not consider autism a disease. As researchers at the Swiss Brain-Mind Institute wrote in a 2007 article, “The autistic person is an individual with remarkable and far above average capabilities due to greatly enhanced perception, attention, and memory. In fact, it is this hyper-functionality which could render the individual debilitated.”
At present, there is no cure for autism. I understand why some people on the spectrum might want a cure. Being autistic, even at a high-functioning level, is very difficult. For people on the severe end of the spectrum, the condition can be truly disabling.
Personally, I do not want to be cured. Autism makes me who I am, and it has given me many gifts. I am sensitive, empathetic, and artistic. I see great beauty in the world, and I feel its injustices very deeply. I am very direct in my speech, and for that reason, people intuitively trust me.
I would not want to be different. I am proud of who I am. It has taken me 50 years to discover the truth about my life. In the time remaining to me, I plan to mine that truth for all its worth.
– Rachel Cohen-Rottenberg
This is probably the most controversial myth of all. I am not even sure how I feel about it myself. As a generalization, I do not agree with it at all. Politically, I think it is a very dangerous statement. Personally, I wonder about it.
There are times in my life when I would rather have been dead than autistic. Of course at the time, I did not think of it in those terms, but I did think of it in terms of that bad things happened to me because I was different from everyone else and could not figure out how to ‘do things right’. The only way to make things better was to not exist at all. Luckily, my young black and white brain was more concerned with not making my family sad than with feeling better.
As an adult who is no longer in such constant pain, I now also realize that my best skills and attributes are most likely also due to being autistic. Of course there are many things that shape a person, but on a very basic level, I believe that being autistic has been a huge factor in becoming the person I am, not only due to genetic or physiological differences, but also due to the way people have treated me over the years as a direct result of my differences, and by my reactions to that treatment.
As a result of my own experiences, I am not always sure that I don’t want to be cured. For the most part, after several years of learning and trying to accept this, I am usually happy to be how I am. If I were ‘cured’, I would lose the best parts of myself along with the worst. My life would be easier for sure, but the price of losing myself is too high of a cost to pay.
My “choice” of not wanting to be cured has much to do with the fact that I have a loving supportive partner and family, and that I am able to gradually build my business and work for myself. As much as I feel that it is wrong to say that autism is a disease that needs to be cured, I also think that a cure might benefit many autistic people, regardless of how “functional” they are. I know those are fighting words in some circles, but I really wish they weren’t.
8 thoughts on “Autism Myths #2 and #10”
Love this post sweetie! I think the “psychological” definition is not so clear cut – for example genetics can also predispose people to things like depression, anxiety, psychosis – which are also talked about and seen as changes in the brain and body chemistry. I think there is no easy answer – as I understand it, people can also be genetically predisposed to being autistic. I don’t think you can really separate it out.
It is all very confusing and like you say, there are so many viewpoints and experiences out there about that and about whether or not efforts should be made to find a “cure.” That is a very personal thing. All I know is that there needs to be even more support for and awareness about people on the spectrum and that it’s so important for their (and your) voices to lead the way with what is needed for service provision as well as politically and socially.
Trouble is the real myth is the myth that there is such a thing as mental illness at all, it is all neurodiversity and when autists set themselves above there cousins in oppression then it starts getting rather murky and stomach churning for me.
You see when you look at things from the perspective of the social model of disability you see, that we are indeed part of this same continuum of labelled and stigmatised people.
Now the real mental illness that I see, is delusion, that is to say the ignorant and prejudicial state of those who consider themselves so mentally and physically perfect that they can create the categories of difference and essentially piss on us all from a great height, and it smells no less for there hauteur.
I think both of these items address the same thing. A mental illness is a condition in which a healthy person has broken down under stress and is no longer functioning properly. The way in which you break down under stress is at least partly genetic (some people are more vulnerable to particular conditions than other), but the stressor is necessary for the condition to occur. Not everyone recovers from mental illness, and once it starts, it may continue on and off through the lifespan, but some do recover completely (and more than was previously thought for schizophrenia). (I agree with you that “neurological” versus “psychological” is not clear.)
Autism, on the other hand, is continuous from birth and is not going to go away with treatment, though certainly finding ways to improve coping would be a good idea, in order for us to contribute to society rather than acquire mental illness on top of the neurological difference.
I think this is something that people feel on an instinctive level, so it’s rather hard to argue effectively with people who feel differently.
I’m going to go check out the rest of what she wrote.
I actually have a physical brain abnormality (septo optic dysplasia), mental illness (bipolar), AND autism. So…I get to fit into all groups!
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Enjoyed reading what Rachel has written, gave me a lot of insight. About the “neourological” vs “psychological” bit, “neurological” refers to neurons & neuronal tissue usually implying the brain & its neurotransmitters (messengers); whereas “psychological” refers to more of a problem of perception of stimuli rather than an actual physical problem with the brain or its neurotransmitters. I hope that clears up the confusion! I am a Dr by the way.
Thanks for the explanations everyone!
Very interesting perspective Laurentius Rex. I agree that it is all neurodiversity, but some people need aid, meds, or services that are only available to people with a certain label. Too bad the labels usually come with a stigma attached.
thanks for shining a light on these things, i think that society needs to know these things so we can move forward and continue to help people with autism.