the history of autism

My first toe dip into the training course, the Inside of Autism, by the Autistic Advocate, Kieran Rose. Explaining a brief history of Autism from its beginnings in the 1930s, all the way to the present day. He reframes it. His directness is great. I love his energy.

Without giving the game away (you need to do this course if you haven’t already), Kieran explains that everything about the way Autism is framed professionally is one of deficit, of Autistic people not being able to fit into a normal mould, and its all mostly been theorised by people based on very little evidence. The theory of Asperger’s being mis-translated as a Spectrum that everyone is upon, when really he meant that every Autistic person has a spectrum, is incredibly insane. I think he was onto something. I can go from mild to severe depending on whats happening to me. But, he’s mixed up with the Nazis, which puts a dirty spin on it.

It is a distressing reality that the very institutions and organisations intended to support Autistic people often end up causing more harm than good. The use of behavioural treatments and shock therapies, rather than fostering understanding and acceptance, leads to further marginalisation, distress and trauma. These approaches are often aimed at enforcing conformity rather than embracing neurodiversity. Moreover, the misconception that Autistic people lack empathy perpetuates damaging stereotypes and prevents genuine progress towards inclusivity and support. It is crucial to reevaluate the methods and attitudes prevalent in these support systems to ensure that they truly serve our needs and well-being of Autistic individuals, rather than dehumanising us.

"Autistics lack one of the quintessential abilities that makes us human." - Simon Baron-Cohen 1997

He is referring to empathy. Simon Baron-Cohen is a British clinical psychologist and professor of developmental psychopathology at the University of Cambridge. He is the director of the university's Autism Research Centre and a Fellow of Trinity College. The fact that someone with such influence is saying these things is a terrible state of affairs. I most certainly CAN empathise, as I’m sure most other Autistic people can. I struggle to communicate that empathy in a way that makes the other person feel better, and I often get it wrong. I have a logical mind, so I come up with logical solutions, when my partner just wants me to listen and say “Its ok. I understand.” This is all the double empath problem. Which is one of the biggest issues in my relationship with my partner.

Most Neurotypical people can’t empathise with Autistic people because it requires them to adapt their behaviour in order to enable us to be the best version of ourselves. I may be generalising there, but I think it’s true. This is maybe why the theorists got it so very wrong. In the current narrative, I’m expected to change everything about myself to make my life work and adapt to Neurotypical people. No. I need to discover exactly who I am in order to figure out which parts of my life make me feel good, so that I can make life work for me, then I can figure out how I can adapt to make others around me feel better. It's more about my awareness of others, and the awareness of my feelings and how I project myself. My journey has properly begun, and I’m excited for the next video.

first steps

In the days after my diagnosis I felt a very strong need to connect with anybody I knew who had Autism. The list was short. Very Short. There were two people I knew that weren’t children, who were Autistic.

I reached out to both. It has been incredible being able to talk to people who understand. I would urge anyone to do that too. I received some great advice, which I’ll share in this blog as I go through it.

I did reach out to a Facebook Group, but this didn’t go very well. Being new, I didn’t really understand the negative connotations of the language surrounding Autism. I used the phrase “High Functioning”, and was quickly told off. I left the group immediately feeling un-supported and pretty bad about myself. (Not sure what the lesson is there.)

I don’t really know what my partner was going through. She didn’t know what to do next I suppose. The feelings were negative. I remember that. I think my Autistic brain has already repressed it. I’ve realised I do this with small negative events. I forget them pretty quickly and re-create the narrative to make myself feel better. (theres probably a name for that.)

I felt an intense amount of relief and validation from my diagnosis. I am not a horrible person. I am Autistic. I am mis-understood by the world. I'm Autistic. The bad relationships that I have with some people are not my fault. I'm Autistic.

I’ve always struggled to keep friends, I’ve blamed life for the most part; moving on and the other person not keeping in touch. I suppose what happened was that I didn’t show enough interest in that person for them to keep in touch.

One thing that most men have in common is Football. People bond over it intensely. I don’t care for it, so I’ve never maintained friendships via it. I’ve noticed people do maintain friendships based on shared interests. I dont fit the stereotypical Autictic mould of having obsessive interests. I have a select few interested. Film. I’m not obsessed with it, but I’ve always loved the escape of watching a film. I suppose I'm escaping from my own life when I watch them. Although I’ve always been a very good reader, to the point where I was the best reader in the class at school, I never kept up with reading Fiction. I’ve only read a handful of books in my life. But films allowed me to digest the story, in a heightened sensory way.

I do however read an insane amount of News. Skimming mostly, but reading none-the-less. It's become a habit.

I’m aware that I’m digressing. This is going to happen. I’m not really editing these posts. The stream of consciousness thing is probably going to be a theme. I want an honest account of my experience to help others. Nothing is contrived.

One of the Autistic people I know told me about the Autistic Advocate - Kieran Rose. He’s an academic, researcher and is Autistic. He did a series of training videos about Autism, designed for recently diagnosed adults, professionals, parents of autistic children; pretty much anyone to be honest. These videos are specifically about reframing the narratives around Autism and helping people to understand Autism from an Autistic perspective. This blog is the result of me watching these videos. It blew my mind wide open. I think I'll write about these learnings next.