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Dystopia: A story of “Autism Research”

Since autism first entered the zeitgeist, and probably before, research into it has focused largely on what causes it. The reason for this is clear to pretty much the entire autistic community.

Rather than embrace the existence of a neurominority, and validating our right to exist, science largely wants to eradicate us.

Now with the looming spectre of Spectrum 10k (S10k), never has it been more obvious that our wellbeing and our needs as Autistics do not matter to the Autism Research “Industrial Complex”.

Looking at our genetics is what attracts the big money, and (as in the case of S10k) they won’t guarantee what will be done with that data.

The general population worships the genetic research being done, believing only that they are helping us. While we, the neurominority, beg them to help us improve our quality of life, our wellbeing.

While we beg for scraps of validation and recognition of our needs, groups like the ARC in Cambridge ignore us.

Certainly, their is a premise for a dystopian fiction novel in this scenario, that would require little more than an accurate glance into the future. One need not embellish the truth to tell this tale in a truly terrifying fashion.

Perhaps, then, you can understand why the Autistic community is suffering so greatly right now. I am watching my fellow autistic advocates burnout and shutdown in the wake of yet more research that cares not about the lives of our neurokin.

I will not stand idle while this community is decimated. This community saved my life, I am certain it saved countless others. Now is the time to unite, and shift the scientific paradigm to one that listens to the minorities it claims to act for.

I will not be erased, and I will not allow my fellow Autistics to be erased either.

I believe a future without Autistic people is a bleak one. A world without diversity is a world without a soul.

Diversity is at the heart of any healthy society, civilisations that fear diversity are known to crumble. S10k goes beyond the very valid concerns of the Autistic community, it is a symptom of a world that fears it’s own diversity.

We must root out the ableism endemic to our communities, and the world at large.

The time to stand up and be heard is now.

Recovery as an Autistic addict: Forging your own path

As an Autistic person, I prefer things to be black and white, yes or no, good or bad. This made life all-the-more complicated when I was embarking on my journey into addiction recovery.

Recovery from addiction is a world of grey areas. This monochromatic world however, is dominated by people who insist that it IS black and white.

“Come to us! We have the only thing that will save you!” They cry.

“If you don’t work this program, you will die or be institutionalised”.

The twelve-steppers insist that they have the answer, while others will tell you that the twelve-step program is a cult. Some will tell you that only abstinence from everything can save you, while others will tell you that moderation is key.

The truth is, you have to find your own way through recovery. Experiment, try different things, see what works for you.

Having the support of your peers is a good start, but ultimately recovery is a solitary journey. By our solipsistic nature, no other human will fully understand your journey.

And thus is the comundrum of being an autistic addict in recovery. Yet another way that recovery systems are not designed for us.

Autistic people and suicide: A troubling tale.

It has been known for some time that Autistic people experience suicidal thoughts, ideation, and attempts at a much higher rate than the general population, but one recent piece of commentary paints a stark image of Autistic suffering.

South et al (2021) discuss the field of Autistic suicide prevalence. One of the most uncomfortable truths in their writing comes from Kõlves et al (2021). This study found the incidence rate of auicide attempts and deaths amongst Autistics to be over 3 times higher than the general population. This figure was higher still for Autistic women and Autistics with co-occuring psychiatric conditions.

Why is this?

In general, Autistics have to cope everyday with a system that by its very nature traumatises the Autistic mind. We are forced to mask who we are just to survive.

Just 22% of Autistics are in any kind of employment (Office for National Statistics, 2021), a disturbing figure when you consider that for many, having a job dictates your access to physical and mental health care.

This feeds neatly into the idea of minority stress. Dr Monique Botha-Kite has done some great work in this field and I recommend checking out the live session that Dr Botha-Kite did with Aucademy on the topic.

Botha and Frost (2018) found that as an identity-based minority, Autistic people experience increased social stress throughout their lives. This has a range of impacts that I won’t get into here, but I highly recommend checking out the study here.

We also can not ignore the intersections with the BIPOC and LGBTQIA+ communities, which represent a huge quantity of the community. Both of these communities experience their own minority stress, and we need to familiarise ourselves with how these different stressor interact with and potentiate each other.

The world is not designed for Autistics. It is a harsh environment that is actively killing our people. But what can be done about it?

We need to improve the diagnostic process and post-diagnostic support. Currently many Autistic people wait too long for a diagnosis that comes with exactly zero help.

We need to improve access to mental health and substance use treatment. Clinicians working within these services need to be not only aware of the neurodiversity movement, but actively engaging with and supporting it.

In fact, all professionals working with Autistic people need to be engaging with and supporting the neurodiversity movement.

Everyone needs to familiarise themselves with the unique intersection of BIPOC and Autistic experiences.

Autistic people need improved access to support for LGBTQIA+ issues such as gender dysphoria.

These are a few suggestions that I believe could help improve the suicide rate for Autistic people by improving their quality of life.

It is clear that the neurodiversity movement still has quite a distance to go, but I firmly believe that slowly but surely, we will get to where we are going.

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