Autism ADHD and so much more.

Martijn Dekker created Independent ‘Living on the Autistic Spectrum ‘in 1996, with the hope and intention of inclusivity and open debate and discussion and understanding. In the 2019 book ‘Autism: A New Introduction to Psychological Theory and Current Debate’ Happé and Watson report that he reluctantly concluded that when hoping to meet and belong to a group of seemingly similar neurodivergent people it is often the case that they “find themselves being told precisely what to believe, how to identify and how to communicate, with any perceived transgression resulting in a swift ban”.

Even within what perhaps might be expected to be a homogenous group with an accepted narrative, there is much division. There are different theories, different models and a myriad of perspectives that create and perpetuate these narratives. To be inclusive we really need to start with open and honest debate and with truth, or might we risk becoming as polarised and prejudice as the communities we criticise?

Do we need to accept that we might be wrong in order to ever be right?

‘Factfullness’ by Hans Rosling (2018) is all about the facts and so, for my autistic brain, is just perfect. It is amazing and describes our fabulous potential to be wrong. If you have not encountered Hans, who sadly is no longer alive, his work and words and ideas, which his family have continued, are a breath of fresh air and challenge us all to rethink how we think and to revaluate what we think we know. Hans says

 “I want people, when they realise they have been wrong about the world, to feel not embarrassment, but that childlike sense of wonder, inspiration, and curiosity that I remember from the circus, and that I still get every time I discover I have been wrong: wow, how is that even possible”.

 In his book he sets out to explain how and why most of us don’t see the world as it actually is. If being right and living in a bubble are all that matters then just carry on regardless, he says, but if we are ready for critical thinking and are prepared to be “humble, curious and ready to be amazed” then he has lots to share.

So, I love Hans Rosling and I love facts. I worry that there is a propensity now for fact and opinion to be confused. I would love to create a sort of board game that goes like this – we first establish the fact, the real fact, a checkable, reliable, established fact. It might be that 20% of migrants are illegal. It might be that crime is committed by a certain group over another. It might be that certain groups succeed in education or have more children. Whatever it might be, it would be a fact. And then, we would write down the fact on a piece of paper, or card, and put it in the middle of the table. Once the fact is there, and we have all agreed that it is indeed a fact, then, and only then, can we all express our opinions about it. Thus, we have distinguished between the fact and our opinion. To me, facts are for us all and opinion is personal. That should be the name of my new board game. Is it a fact or is it just my opinion? Or maybe my thesis? Discuss!

The Polarisation of the Narrative.

Narrative is the way that we tell the story; the way that we describe who we are and how we see the world. When language is over complicated or prescriptive it inadvertently creates division and exclusion, interestingly discussed by Clayton (2015) when she criticises the polysyllabic vernacular of research papers. In my work and research, I hear narratives of suffering, of struggle and of hope and therefore I try not to align anywhere in particular because I don’t want to be guilty of marginalising another person’s needs. I live the perfect dichotomy that seems to be a secret truth surrounding autism. I advocate for a social model of understanding and accommodation in a society that adapts and changes and respects differing needs. But in truth and in practice I often find life difficult and overwhelming, and I know that it is because I am autistic. To deny the negatives and deny others the right to medical intervention, if they desire it, seems counter-productive to me because I certainly don’t know what is best or right and I’m not sure that anyone else should say that they do.

The Neurodiversity Movement and Inclusion.

In 2004 Kathleen Seidel registered ‘neurodiversity’ aiming to address the negative narratives filled with metaphors of battle and disease and to move away from the language of disability and dysfunction yet, at the same time calling individuals “disabled” (Kapp, 2020 P.99). Within academic texts and neurodiversity literature positive terminology is now more often the norm, but across much of the media this is not reflected.

Opponents of medical model terminology connoting disease, object to attributing the verb to have with autism and yet a current Mccain TV advert introduces brothers who directly say that they “have autism”. Similarly, when Sesame Street introduce Julia it is with the online link “Julia has autism”. In the blog Musingsofanaspie (2015) the author refers to herself as an aspie and feels that “Asperger’s diagnosis” changed her life. An article on Thinking Autism.org (2021) questions the consequences of polarised debate. The author questions the effectiveness of social model accommodations for her son because she is seeking treatment or cure. In The Telegraph Georgina Fuller (2022) describes her child as high functioning with Asperger’s. To me it seems that autism narrative is as varied and passionate as the communities it describes.

Neurodiversity refers to us all and neurodivergent to the less predominant types of brain, often called neurotypical (NT). A more neutral term proposed by Dr Beardon (2019) is Predominant Neuro Type (PNT). His rational for this is that neurotypical brings focus on what is considered typical and what is not, which could insinuate a lack of typical or normal in the autistic person.

In 2004 The United Nations used ‘Nothing About Us Without Us’ for their International Day of Disabled Persons. This seems to be an oxymoron to me. On one hand quoting the motto of inclusion but then using a medical model term of impairment.

And my point is what? If you dare ask.

My point? Have you met me? It takes a long time to get to the point because my amazing brain sees the end and then the middle and then starts. But it might start at the end or the middle or the start. Who knows? Strap in and enjoy the ride!

Oh, I didn’t get to the point – of course. This is the beauty of ADHD meeting an autistic brain and of course you can’t see that the dyspraxia just knocked over my wine and my Complex Post Traumatic Stress Disorder is already making me worry about the rejection that posting this might create. Never a sob story. Only ever just the facts and the truth. They are different. Like facts and opinions.

I told my son that I was volunteering with a wonderful charity called ‘Neurodiverisity in Business’ who want to include neurodivergent minds whilst being cognisant that we are all neurodiverse. He pointed out, as he likes to do, that as we are all neurodiverse the company goal would be achieved very easily. Set up a company to include lots of people and then congratulate oneself on doing so?

Ooh good point I thought. I then did a quick survey. Very quick because with my autistic brain, I have a very limited number of friends. Too scary otherwise. They might ask me to lie or to talk about a non-fiction TV programme that doesn’t include scenery, philosophy, or a train. I asked what the difference was between neurodiverse and neurodivergent and everyone said nothing. I then asked about the term neurodiverse, and everyone said that it applied to the ‘neurodiverse’ meaning neurodivergent. To everyone they were interchangeable. We may preach one sermon, but it is possible that is not being heard and received and we may need to reflect and know this.

How can we refer to ourselves and who decides?

I worked with a London charity and was invited to present talks on neurodiversity within schools. They were well received, and many parents were surprised to realise that autism could ‘look and sound’ like me. The very reason that I want to expand my presentations and discussions. If three parents in one small school felt that their view of autism had been changed, imagine the difference we could make if more people like me get together to defy the stereotypes and refute the stigma.

The only area of concern for me was that I wanted to say that since we are all neurodiverse then we are all different ,and therefore we have that in common. The charity didn’t like this and insisted that I make sure autism was seen as different. I respected their wishes but worry about what happens if we set ourselves aside whilst campaigning for inclusion.

The parents that I met whilst presenting my talks were all keen that their children be labelled as Asperger’s. I explained that the term has disappeared and that many dislike it, but I respected their choice and understood it. They, like me in the past, believed the stereotypes of autism. They believed that autism was a learning difficulty, and they did not want their academically achieving children seen as autistic. The issue here is not the parents, it is the fact that despite all of our efforts we seem, all too frequently to be preaching to the converted. I don’t have the answer, but I do have enough passion to try and speak out across communities. We need to reach deeper into the reluctant neurotypical communities in order to challenge the myths, the misunderstanding and the misconceptions that engulf the terms neurodiverse and neurodivergent.

At a lecture for my MA in Autism studies I relayed this experience. The other students were mainly academics and practitioners in the field. They told me that the word Asperger’s couldn’t be used. I assured them that it was being. Sure, it’s a fine sentiment, but if that is not what is happening in real life, we are not going to change anything by denying its existence and if we tell people what they are allowed to say and think then we deny them their real lived experiences and challenges. In my opinion.