I am a Complete Person

Hello folks. Originally this post was about a different topic and was supposed to be uploaded next week. However, something came to light and I decided it was too important to wait. There is no point me beating around the hedge, so please look at the following pictures:

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These photos are taken of some of the slides used in the lecture on autism, taught in the Psychology department at my university (The University of Exeter). When these were sent into the group chat I am in with 3 of my autistic friends, it was rather unsurprisingly met with frustration and, dare I say, rage. My personal reaction was so strong that I was actually shaking. I should note that I am not particularly quick to anger, and yet I found myself needing to consult my feelings wheel to find a word strong enough to convey my emotions. The word I landed on was ‘Abhorrent’. This was as close as I could get to encapsulating how I felt in a single word, but I felt like it wasn’t enough. The way they spoke about autistic people -about people like me- was a hard hit to take. It felt personal, it felt hateful and the worst part is: it felt familiar.

The ideas shown in these slides are not all that uncommon. I have heard similar things both online and, a couple of times, to my face. However, this incident is particularly significant because this is what is being taught in the Psychology department of a leading UK university. These are the attitudes that are not only held, but also chosen to be passed on by the lecturers here. This is the content they are teaching to the next generation of Psychologists, therapists etc. These are the views that students will have to align their ideas to in order to get marks in any related essays and tests.

There is so much to unpack here, but I want to quickly go through some of the key points and talk about why they are so wrong and so hurtful.

• “Autism is defined by an absence” – Right off the bat, these slides talk about how they view autistic people as being less than what they consider a complete human – they have absences in their personality. Starting this topic on the assumption that autism makes a person in some way less complete is dangerous: it taints everything that follows with the idea that they are deficient or devoid of part of what makes us all people.
• “comparison with normal, non-disabled development” – I think anyone with any type of disability will reject this statement. Being disabled does not make you and your development abnormal, nor should it ever be stated as such. Imagine someone walking up to me or any autistic or otherwise disabled person and saying that we aren’t “normal”. If it’s not okay to do in real life, it is not okay in an academic setting.
• “Seem to not have the ability to “attend” to others to begin the development of social and communicative skills” – So they include the quoted word “attend” in this extract, and neglect to give any source for where this comes from. If I have learnt anything about respectable academic writing, it is that referencing is key. If we ignore this oversight, the whole sentence is still not factually correct. For a start it is very vague, but my main issue with it is that it is simply not true. Autism varies in its impact on people, but I and the vast majority of autistic people I know are perfectly capable of socializing with others. It is often more difficult, sure. However, I have a group of friends, all of whom are autistic, and we have lovely social interactions with each other. We went for a coffee together not too long ago and ended up having to leave because we’d been there so long chatting that they were closing. We have all talked about how we learnt the social skills we have today and while we all had to put independent effort into learning them, I love spending time with them and find them much less tiring to communicate with than the majority of neurotypical people.
• “both components of empathy may be impaired in Autism and Asperger Syndrome” – Alrighty, this is a misconception that keeps coming up. Certainly not all of us, but many of us have a normal amount or possibly more empathy than the average neurotypical person, we just don’t necessarily express it in the expected way. Varying levels of empathy is a human trait, not just an autistic one. I have talked about this before in a previous post (please click here to read it), but to really hammer this home, I asked my best friend -who I live with and who knows me better than almost anyone else- “Do you think I have empathy”. The response was “Yes”. (See below for screenshot confirmation.) The author of this comment was Simon Baron Cohen who is one of the most well-known, influential autism researchers of the time. He is quite controversial and really deserves a whole post, so I won’t comment too much on this for the time being.
• “A person with autism” – I have posted about the person first vs identity first language and how “autistic person” is vastly preferred by the community. This seems small but my friend (who is autistic herself), put it in a way that I think makes it more understandable if you are struggling with why it is important. We were talking about this and she joked that she wouldn’t say “A person with Portugal-ism” because that would be completely insane. There were then jokes shared about saying things like “but you don’t look Portuguese” or “ah, it must be so difficult to have Portugal-ism. How did your parents react when they found out?” I thought that was a really funny and relatable way to think about it!
• The whole quote given – This quote is taken from 1980, so 40 years ago, and is very possibly completely fabricated. If this was indeed said by a Donald Cohen then that is wonderful that they actually have a quote, but so incredibly problematic that it is the only quote they have used from an autistic person. Autism is a spectrum condition and meeting one autistic person does not really give you any insight into the condition as a whole.
• “the very things you hope to change” – there are no end to the number of teen films centered around why you shouldn’t change for anyone and should instead be true to yourself. Why should this be different for autistic people? There isn’t anything wrong with being autistic and I am a firm believer that the help offered to autistic people should be based around helping them make the world work for them, rather than trying to reshape who they are in order to make them work for the world. If you are working with autistic people and are currently reading this: stop trying to change us! There is the saying “if it ain’t broke, don’t fix it.” Well autistic people “ain’t broke”, and so there’s nothing you can “fix”.
• “the search for rewards is difficult” – this is again misleading, as it is only difficult to find rewards if you have invested no time getting to know the person. Special interests are often a huge part of an autistic person’s life and so even letting them talk to you about whatever it is they are interested in will bring loads of joy. I know this because I love to talk about dinosaurs and maths to people. I know that they won’t remember any of it and they can’t always say much back to me, but just doing a stream of consciousness at them is really nice! If the autistic person is non-verbal or has additional communication impairments then what makes them happy? Is there a particular action they like doing or a texture they like to feel? Do they have a favourite food? There are multiple aspects to people’s lives so all you have to do is work out what sparks joy.

I can talk for even longer about the content of those slides, but it isn’t necessary, and I covered the biggest issues there. I want to switch focus a bit and talk about autism research as a whole. Most of the research is old and outdated. The majority was also only conducted with young boys and so is not applicable to anyone outside that demographic. Possibly the most worrying part is a lot of it is based of the research of Hans Asperger, the man who “Asperger Syndrome” was later named after. I think this man provides a wonderful example of why checking the history of research is so needed.

Hans was an Austrian Pediatrician and has long been hailed as some sort of autism champion. The parts that are often left out are that he originally deemed the condition “autistic psychopathy” and was heavily into Nazi eugenics. He is said to have “saved” autistic kids from being killed during these times, but he actually referred several children to a clinic called ‘Am Spiegelgrund’ in Vienna. This clinic was active in World War II and murdered 789 children under the Nazi eugenics program. There are records of referrals written in Hans’ handwriting referring autistic kids there, with reasons such as “must be an unbearable burden to the mother” quoted on them. He publicly stated his approval of “race hygiene” and there is no argument for him possibly being unaware of what they were doing. With every referral he effectively and knowingly signed the death warrant of a disabled child.

Hans only died in 1980 and his original study was on 4 boys. I am still young and don’t have the academic experience of many of the people I am surrounded by at university, but I cannot in any way find a justification for us continuing to perform research based on what he did. The man studied autistic people to work out whether or not they should be deemed “genetically inferior”. I cannot express strongly enough my disgust at not only his work, but the fact that this has not been completely thrown out of the window. I will not explain this any further as if you do not understand and agree then there is nothing I can say to change your mind. The sources I used for this section can be found here and here, with more information about the clinic here.

The slides presented in this post are only a small part of the issues surrounding autism research. The vast majority is written by non-autistic people with little to no actual interaction with us outside their highly rigid studies. The labels they use such as high/low functioning are not only vague and meaningless but actively harmful to the autistic population. To illustrate this point, please consider the following conversation:

Autistic Person: So, are you autistic?

Neurotypical: No.

Autistic Person: But what type of non-autistic person are you? High functioning or low functioning?

Neurotypical: That doesn’t make any sense.

Autistic Person: But I’ve studied neurotypicals, so I know all about it.

Neurotypical: There aren’t just two types of person?

Autistic Person: No, you’re wrong. I took a module in people like you, so you obviously don’t understand

Can you see why this makes no sense? You cannot categorise people based on two options like these. Autism affects people differently. It varies depending on a multitude of factors, including things like how tired you are in that particular moment. There are some moments where I am able to mask well and no one would realise that I am autistic, and there are also moments where I am struggling and cannot speak or even get myself out of the situation and I need outside help. I have frequented the same supermarket for months, and sometimes I am fine and don’t have any issues, and sometimes I have had to put my grocery basket on the floor and actually run out before I become completely immobile and shutdown. If you reread the slides and replace “autism” with the word “person” then it is obvious why it is so offensive and how wrong it is to talk about people like that.

If you still don’t understand my anger, let me try one other way to explain this: think of people like a sandwich. People are all made with different breads, different fillings, and different spreads. Let’s say the diagnostic criteria for a sandwich to be autistic is that they are simply sandwiches with no lettuce in them. They can have any number of other fillings, but they just don’t have a layer of lettuce. Some of these lettuce-free sandwiches have similar fillings to each other whereas some do not. Some lettuce-free sandwiches are really similar to sandwiches with lettuce, except that they just don’t have any lettuce. Having lettuce or not having lettuce does not make them any less of a valid sandwich. Any sandwiches who think so are being silly because being a sandwich does not depend on lettuce content. I have eaten many sandwiches with wilted, sub-par lettuce as well as many sandwiches without any lettuce at all. They were all still sandwiches.

Reading things like these slides also has another impact that I haven’t covered yet, and that is how it affects the mental health of autistic people. I am finally beginning to move on from the period of my life where I despised being autistic and being different. When this is all the readily available material on your condition, you begin to internalize what they are saying. If you don’t know other autistic people and those around you believe in what they are being fed then it is even harder to retain any semblance of positive self-worth. I hated the fact that it was harder for me and I whole-heartedly believed until very recently that because I was the minority, I was the one that should make all the adjustments and conform. After talking to other people both in social settings and in therapy, I am able to understand how wrong that belief was. There is nothing lesser about me. I am different in some respects to the majority of the population, but that doesn’t make me less deserving of respect and dignity. When I voiced my thoughts before I was often met with “oh, you’re not that kind of autistic.” I reject that statement. I am autistic. I am proud of being autistic and I am sick of people getting away with treating me and all my autistic peers in ways that are not acceptable.

In the latest version of the DSM, there is only 1 autism diagnosis: ASD. Everyone on the spectrum has ASD. It is one unifying condition and so when people talk about me or others being “not that kind of autistic,” they are wrong. Many of us cannot speak out because the condition is literally ruled by communication difficulties and impairments. This has meant many academics, charities and organisations have been able to get away with treating us as second-rate and it is not appropriate and cannot be tolerated. This is what is being promoted in this Psychology course, despite there actually being a social group for people with ASD at the university. They have access to an entire group of people with the condition, most of whom are more than happy to talk about it, and all of whom have gone through similar experiences for being autistic. I met my circle of autistic friends (or I suppose square because there are 4 of us?) through that social group and we have had conversations about everything I have covered above. Not one of them felt that what they are saying should in any way be allowed. I understand that if you haven’t gone through your entire life having this said about you and people with the same condition, then it might be hard to grasp how deeply this hurts. I am not criticizing those who were unaware or who have been told these without reason to question it. The blame for this is on the institutions and people actively propagating these ideas. No one deserves to be spoken about in this manner and it has been going on for far too long. Frankly, I don’t care about the people who will read this and decide I am wrong or overreacting. I have worked damned hard to get my communication skills to a point where I can write this, and I have worked even harder to get my self-esteem to a point where I will publish it. I am not any less of a person because I am autistic. I am autistic and I am proud.

Sarah