Autism is not an illness: The problem with how we diagnose Autism

Every day I see people sharing the story of their child’s Autism diagnosis. And every day I see this phrase, “From very early on I could see there was something wrong.” One word in that sentence makes me really uncomfortable. “Wrong”. And it brings to mind some questions.

Why does society see anything other than “normal” as wrong?

Why is Autism seen as a defect? As undesirable? As inherently bad?

Why is Autism talked about as something separate from a person, like if you removed it there would be some kind of a better version of the person left behind?

Why is Autism compared to AIDS and cancer? Why is Autism talked about as if it were an illness?

All these things could be partly attributed to the way Autism is diagnosed. By that I mean two things.

The first is that the way we identify who is Autistic is to have them diagnosed by a medical professional. Medical professionals are the gate keepers to all sorts of things. If I want to (in Australia) get some support from a psychologist, for example, because I am struggling with some emotional issues, and I want to be able to access some financial assistance to pay for it, I have to get a referral from a General Practitioner. The GP doesn’t need to know I need emotional support, and there is not really anything the GP can do about it either. It is not a medical problem with a medical solution, but I still need to see a medical professional to access support. It is similar with an Autism diagnosis. For the most part, there really isn’t much a medical professional can do to help an Autistic person with their Autism (they might be able to help with things like anxiety, but that is not Autism), but to get a diagnosis they must be consulted.

The second thing I am referring to when I say Autism is thought of as a disorder/defect/illness is the actual diagnostic procedure and criteria. To understand what I mean here, some history is required.

As I interpret things, the history books say that there were two men working on recording a particular set of symptoms/behaviours around about the same time (1940s). Hans Asperger, an Austrian paediatrician, and Leo Kanner, a doctor working in The United States of America, who both used the word “autism” in describing what they were observing (maybe because Bleuler used it a generation earlier in recording the withdrawal and stimming behaviours he observed in adult schizophrenics). Even though they were essentially recording the same sorts of things, the fact that they weren’t working together (an ocean and a World War separated them) meant that two different labels were born. This lead to the common belief there is a kind of “less bad” Autism (Aspergers Syndrome- named by Lorna Wing in honour of Hans Apserger) and a “more bad” Autism (Autistic Spectrum Disorder)- which has evolved into a graded spectrum with some people being considered more Autistic than others.

Initially a diagnosis of Autism was followed by treatment which could include use of LSD, electric shocks, and behavioural manipulation therapy. Sadly, there are people who still think some of these style of treatments are appropriate. Fortunately there are many now who do not agree, and the use of these treatments is declining somewhat. However, the mid 1900’s is when the first Diagnostic and Statistical Manual of Mental Disorders was being put together by the American Psychiatric Association. By 1968, the word Autistic is in the DSM II, though not as a diagnosis in itself. The 1980 DSM III included diagnostic criteria for Infantile Autism, and the 1987 DSM II-R included Autistic Disorder. DSM IV, IV-TR and 5 all contain diagnostic criteria based on observation of a group of behaviours.

It’s not surprising, given it was medical professionals who were in a position to notice the trends of behaviours and challenges, that it was medical professionals who were the people to put together a diagnostic criteria for Autism. I’m not going to argue diagnosis is a bad thing. There is a lot of value in knowing who you are, having insight into your strengths and weaknesses and being able to identify with your tribe. Diagnosis can be a good thing. But it is a shame that because it was medical professionals who identified Autism, the discourse surrounding it continues to be one of medicalisation and pathologising. However, time- as it does- has shown us that Autism is not something that can be “treated” and “cured”, and there is now much research* to show that Autism is a result of genetically influenced neurological changes. That is, as Nick Walker says, “Autism is a genetically-based human neurological variant.”

So, if we accept that Autism is a genetic variance that is simply an expected part of the wider human experience, we have to recognise that this is in stark contrast with the way Autism is viewed by most now. The problems with the way we diagnose Autism, are that official (ie credible) diagnosis:

a/ is only accessible through medical professionals,

b/ categorises Autism as a “Mental Disorder”, and

c/ is seen as something that needs to be treated.

Acknowledging this discrepancy, we must look at the damage approaching Autism as a series of undesirable behaviours, and as something *wrong*, does to Autistic people.

We can start by imagining what it would be like to exist in a world in which you can easily find evidence that shows people think you are not good enough the way you are. Of course some may argue that we all feel that way from time to time, but for Autistic people the confirmation exists in the form of specific therapies design to fix them (or at least make them seem less Autistic), and media campaigns designed to make everyone scared of having a child like you. This is damaging to a persons confidence and sense of worth.

Now, to be clear, I am not suggesting that the whole system be immediately upended and changed. To start with, I don’t have a clue what it would even look like to try to define Autistic culture without a set of diagnostic criteria, and that is not, in any way shape or form, my place. There are much wiser minds than mine who would be willing and able to discuss this. I am merely recording my thoughts on the topic, as I process what I hear others saying about the impact pathologising of Autism has on Autistic people. I am trying to bring this conversation to the people I am in contact with, in order to support those who have been talking about it for a while now. I am saying that I believe it is time that people in a position to make change in the way Autism is diagnosed need to begin to reassess the way it is done. They need to consult with Autistic people and listen to what they say about how the current system serves them, and how it could be improved.

As with each of the articles in this series, your thoughts and comments are both encouraged and welcomed. What do you think? Do you agree that the diagnostic process contributes to the stigma around Autism and the negative attitudes toward it? I’m looking forward to continuing the conversation with you.

 

 

 

*{If you would like to look at some of the studies go to Google Scholar, and search ‘Autism genetic’ and you will get pages of research reports and journal articles. Some of the studies were done 20 years ago, and clearly show Autism to be a genetic variation. Be aware, though that reading the studies will be incredibly triggering for many, as they are full of pathologising language.}

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One thought on “Autism is not an illness: The problem with how we diagnose Autism

  1. Karie Gilliland del Solar says:

    Thank you Michelle for writing this. I really feel this is insightful. My son is autistic, he is 4 years old and he was diagnosed when he was 18 months. It’s been a very difficult road for me as a mother, I think that you hit it spot on. I did not know anything about autism at all, but I did know it was “wrong”. When I found out my son was autistic, I was so upset. When I reflect on it now, I realize that I was so upset because I had the impression it was a bad thing, and reading a long evaluation of my son’s “condition” and all of his “deficits” and “delays” it was overwhelming. It felt as if my son was destine to struggle forever and I was so worried for him. I wanted to help him no matter what. I researched and tried so many interventions. Looking back, I was only doing what professionals and “experts” told me was right. I was holding my breath, hoping my child would get “better”. Then one day, I came to realize, I missed my son so much. He was in so much therapy, and I never got to spend time with him. I started to get really resentful about the therapy. Luckily I have found some really great “experts” that have helped guide me towards a much more supportive therapy that helps my son with things that make sense, like communication and playing. I realized that the only thing that changed when my son was diagnosed was me, not him, he was still my sweet loving little boy. It was a hard and long process for me. I am so thankful I have this new mindset. It could have followed my son his entire life. I have decided to work with the clinic that helped me come to this realization, I’m getting my MSW and hope to be with families as their child is diagnosed. I want to help them realize that it is not “wrong” or “bad”. I want to help them understand how it affects their child and to help them create the correct supports for their child. To encourage them to take their kids out and engage in everyday child activities. That when your child gets dysregulated, they are communicating to you, not being disobedient. I want to change the experience of the diagnosis for the family, and to try and keep the same bond between the family and their child and to empower them.

    We took our family to a new restaurant the other day and right when we walked in, my son started crying. I tried to put him in the booth, and he refused. I calmly asked the server if they could turn down the music (it was super loud) to see if it helped him at all. I took him out of the restaurant as they turned down the music, gave him a few moments to settle down, then took him back inside. He had the same response. So I told my husband to get our food to go. I told my son, “we don’t have to eat here, I can tell it makes you very uncomfortable, is it ok if we go to the mall playground to eat” (he likes the mall playground and it was close). He used his iPad to tell me yes, and smiled. We left and had a great takeout dinner at the mall playground, where he felt so much more comfortable, and he also got to play in the playground with his brother after. My new insight on my son has changed our whole family dynamic. I feel so much better supporting him and advocating for him, and listening to him when he is trying to tell me something, whether it is on the iPad or with his body language. I have my son back, and we share such a strong loving bond. He doesn’t have to change at all. I want to help the world around him change so that he can feel more comfortable. I rely heavily on your point-of-view because I feel adult autistics have a very valuable insight to me. I take your advice and apply it towards my son, he is nonverbal, so I have to really read through the lines with him to see what he needs. I just want him to feel comfortable in his own skin, to know he is loved and supported and for him to strive to be the best person he can be. That is what I wish for both of my kids, typical and autistic. Anyway – thank you for sharing.

    Like

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