Autistic: Part 1 – A *very* brief overview of society and autism

To explain why this has come about; I work with a mental health care professional in a personal capacity. I conveyed to this person that as an autistic person I often feel misunderstood by healthcare professionals. This person has asked me to teach them about what it's like being autistic. I’ve been trying to think of a way of giving the important information without writing a novel. Autism and being autistic is a complex thing, its not easy to narrow it down. So, what I have decided to do is write a short piece on one part of being autistic for each appointment. I'm sharing these short pieces on one topic relating to being autistic with you too. The first being an overview of society and autism to understand the larger picture before I go into my personal smaller picture.

Basic facts and figures

- 1 in 100 are autistic. (1)

- 3 in 10 autistic adults also have ADHD. (1)

- 40% of autistic people have a learning disability. (1)

- 3 in 10 autistic adults have epilepsy. (1)

- Autistic people die and average of 16 years younger than non-autistic people. (2) (3)

- Autistic people with learning disabilities die more than 30 years prematurely. (2) (3)

- Autistic adults without learning disability are 9x more likely to die from suicide comparable to the average population. (1)

- Autistic children are 28x more likely to consider suicide comparable to non-autistic peers

- 79% have cooccurring mental illness. (1)

- More than 2 in 10 women with anorexia are autistic. (1)

- More than 5 in 10 autistic adults have depression. (1)

- 2 in 5 autistic people are diagnosed with an anxiety disorder. (1)

- 42% of autistic children have diagnosed anxiety disorders. (1)

- Only 32% of autistic adult are in full time or part time paid work, meaning 68% are unemployed. (4)

- Of those whom are unemployed, 77% say they want work. (4)

Autism affects everything. I was born autistic; I will die autistic. It is not a separate entity to me, but a fundamental part of me. My brain is an autistic brain, neurobiological research proves that autism is indeed a different type of brain comparable to Neurotypicals (NTs). My whole life is about autism because I am autistic, in the same way an NTs life is the individual. I cannot choose to be anything different, even if I wanted to. I cannot be ‘less autistic’; I can hide it, sure, but I cannot change my brain. To be ‘less autistic’ is to be less me.

Autism spectrum disorder (ASD) was once thought to be a weak brain. People thought that we autistic people couldn’t process and understand the social world because our brains simply weren’t as good. That we had less well-connected brains, and this often insinuated that we were somehow less human because of it. This idea held true until technological advances allowed us to start to see the inner workings of the brain. When methods such as fMRI started to be used to analyse the brains of autistic people, the idea that autistic people had weak brains lost is legs. It was far more complicated than that. Some research showed that the long-range neural connections were weaker, to compensate the short-range neural connections were of much higher quantity and far more active compared to controls (5). Further research showed that for NTs you could overlay the brain scans and they’d all match up, but the same could not be done with autistic brain scans (6). Meaning that not only do autistic brains have more connectivity overall, hyper-connectivity, they are also completely unique in to each individual.

However, society still hasn’t shaken off the effects of the weak brain theory. The idea that autism is an animalistic disease still hangs in the air. Societal attitudes still align with the idea that being autistic is wrong, being autistic means being less human. Case and point being that many still think a ‘cure’ is needed. Only a few months ago, when working in Paris, a big Pharma rep came up to me and was delighted to tell me that they are working on a drug to ‘cure’ autism. What that actually translates to me is, “we are looking to profit from eradicating people like you.”. A cure is not about getting rid of autism, it is about getting rid of autistic people. Living in a society that wants you gone is not conducive to health, wellbeing or happiness.

This way of thinking about autism means that environments, communities and systems are not accessible to autistic people. That includes education, healthcare, employment, housing, social care, public transport, and so on. Afterall, if we are less human, we shouldn’t be accessing those things anyway, right? *sarcasm* And being less human means its open game for bullying, harassment, gas lighting, stereotyping, ignoring, stigmatising, discriminating, doesn’t it? *sarcasm* Although it’s only occasionally this viewpoint is said out loud, it is constantly implied in the way society acts and reacts to autistic people. This message is a constant drone in the ears of autistic people. It’s no wonder most of us want to die by suicide at some point when we are told we are not welcome, and we can’t access basic services and freedoms. It’s no wonder we die decades younger that NTs on average.

The main reason for the early death of autistic people has been quoted as the inability to access appropriate healthcare. The top causes of death in autistic people are suicide, epilepsy and heart disease. 2 of those 3 are preventable, 1 of the 3 can be managed to reduce the risk of death. So, early death isn’t a part of being autistic; it is a symptom of a system that discriminates against autistic people. Social factors which are known to be risk factors in early death are also incredibly high in the autistic population. Such as lack of education, lack of employment, poverty, isolation and bullying. If autistic people can’t access education, the chances of employment drops. If autistic people can’t access employment, they are at a much higher risk of living in poverty. Societal attitudes mean many have or are being bullied and so fear engaging with their local communities.

None of this is a choice we make. Looking at the figures for employment, 68% aren’t in any kind of employment, out of that population of people 77% said they wanted a paid job but couldn’t access it. So, it is not a lack of desire or motivation that means we are unemployed, it is the systems for employment that are inaccessible to autistic people. The same goes for education.

Many of us try and fit ourselves into society’s idea of an acceptable human, known as masking and camouflaging. However, recent research has shown a very strong link between masking and camouflaging and suicide (7). To use a common metaphor, trying to force a square peg into a round hole isn’t going to work, in this case the square peg ends up excessively damaged. Often autistic people are confronted with the notion that it is our fault that we cannot cope with the way current systems are set up.

Taking mental health services as an example, with 79% of autistic people having cooccurring mental illness (see more stats above) and a drastically increased risk of suicide, you’d think that mental health services should be set up to support this population of people. But they are not. There are basic things which prevent autistic people accessing mental health care such as sensory inaccessible environments. But actually, the most inaccessible thing is that treatments are not adapted for autistic people. Treatments and medications are tested on and developed for NTs, so the evidence shows that they work for NTs. Given autistic brains are different to NT brains then, obviously, those treatments and medications don’t have evidence to show they will work for autistic people. However, healthcare professionals with no autism training will apply those NT treatments and medications to autistic people. When they don’t work it is assumed that it is the autistic person’s fault. Autistic people often feel unheard, misunderstood, blamed and even traumatised by this attitude. Many autistic people are gas lighted by health professionals because those health professionals simply don’t have any understanding of autism, but their relative power means they can gate keep services. Many autistic people can’t access appropriate care for their mental illness. Many try to access care but end up worse off because if it. People die because of this. But you won’t see or hear healthcare professionals owning up to that. Autistic people are less human after all; therefore, it can’t be the professional’s fault, right? *sarcasm*

To cut a long and complex story short, autistic people live in a society that sees them as less human. This creates societal systems that prevent autistic people from being able to access basic freedoms, such as education, healthcare and freedom from bullying and abuse. The early death statistics evidence the discrimination faced by autistic people. However, societal attitudes mean autistic people get blamed for the discrimination they face. Telling me, as an autistic person, to ‘try harder’, ‘learn to fit in’, ‘change the way I think’, that I’m ‘projecting my internal hate on society’, that ‘it can’t be that bad’, that my struggles are invalid or my fault, and that my subconscious has anything to do with an inaccessible society, is a way of blaming me and gas lighting. I am not the cause or reason for not being able to cope in a world that wants to eradicate me because I’m autistic. I don’t need to stop being autistic; society, its attitudes and systems, needs to change.

References

(1) Autistica (2019) https://www.autistica.org.uk/

(2) Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autism spectrum disorder. British Journal of Psychiatry, 208(3), 232-238. doi:10.1192/bjp.bp.114.160192

(3) Autistica () Personal tragedies, public crisis. Accessible: https://www.autistica.org.uk/downloads/files/Personal-tragedies-public-crisis-ONLINE.pdf#asset:1499

(4) National Autistic Society (2016) The autism employment gap. Accessible: file:///C:/Users/maire/Downloads/TMI%20Employment%20Report%2024pp%20WEB.pdf

(5) Rane, P., Cochran, D., Hodge, S. M., Haselgrove, C., Kennedy, D. N., & Frazier, J. A. (2015). Connectivity in Autism: A Review of MRI Connectivity Studies. Harvard review of psychiatry, 23(4), 223–244.

(6) Avital Hahamy, Marlene Behrmann & Rafael Malach (2015) The idiosyncratic brain: distortion of spontaneous connectivity patterns in autism spectrum disorder. Nature Neuroscience. volume 18, pages 302–309

(7) Sarah Cassidy, Louise Bradley, Rebecca Shaw & Simon Baron-Cohen (2018) Risk markers for suicidality in autistic adults. Molecular Autism, volume 9, Article number: 42