Autism and the challenge ahead
There are many things about being Autistic that we can celebrate. However, we have to be careful that in doing so we don’t inadvertently engage in the erasure of our struggles. Campaigns like #ItsNotOkToNotBeOk will only succeed if we commit to improving the things that cause our suffering. That requires some difficult conversations with ourselves. Autism is a site of pain alongside joy, and by having those difficult conversations, we may just be able to prop up that joy.
What are the challenges facing Autistic people?
Broadly speaking, we can identify the collective issues that occur within the abstract concept of autism as minority stress. That is the collective impact of the stressors faced by a minority group (Botha et al, 2020). The research goes on to demonstrate that increased minority stress is correlated with worse mental health outcomes.
Lund (2021) goes further to suggest that in the context of disability, minority stress may be applicable in understanding suicidality. This suggests that stressors both within and beyond one’s social horizon could be causally linked to increased suicidality for Autistic people.
Autism and suicide
According to the Royal College of Psychiatrists, Autistic people are 9x more likely to die by suicide than the general population. Autism, it would seem, represents a significant suicide risk. In fact, they go on to highlight that Autistic children are 28x more likely to think about or attempt suicide.
Attempting to reduce the dramatically increased rates of suicidality among Autistic people requires us to pick apart the different stressors that come together to form the aforementioned minority stress. Rather than fishing people out of the water, we need to find out why they keep falling in.
Autistic people and employment inequality
The Office for National Statistics in the UK suggests that Autistic people are one of the groups most likely to struggle with employment, with only 22% in any kind of employment. While these statistics will pnly have accounted for diagnosed Autistic people, it suggests that autism is not well accommodated in the work environment.
In my opinion, this is a result of hostile work environments and ableism among professionals. Between offensive sensory experiences and ableist colleagues, it is unsurprising that Autistic people struggle to maintain their place in the world of work. This is made more complicated when you consider the high rates of co-occuring ADHD in the Autistic community. ADHD presents a 60% greater chance of being fired (according to adhdcentre.co.uk).
Autism and healthcare inequality
Autistic people often report difficulty with regard to the accessibility of healthcare systems the world over. One of the primary issues discussed about this in literature is the lack of skill and communication breakdown between professional and non-professional (Malik-Soni et al, 2022). It would seem that autism alone is not the only variable in healthcare inequality.
As I have mentioned in previous articles, some academics have used extensions of the double empathy problem to explain empathy and communication barriers between patients and professionals (Shaw et al, 2023). While such divides are significant in reducing accessibility to services, we should also remember that the practicalities of attending appointments and the physical environment also pose significant challenges for Autistic people.
Autism and poverty
Autistic people are more likely to experience poverty than the general population. One of the biggest barriers to financial stability is the inhumane policies around disability benefits in the UK (Grant & Williams on The Conversation, 2023). In particular is the issue with autism classing as a psychiatric disorder. Such groups are among the least likely to be awarded disability benefits.
This, of course, is compounded by the employment inequality mentioned previously. If one can not secure employment or disability benefits, poverty is an inevitability. In my opinion, this correlates with an increased likelihood for criminality and criminal exploitation.
Autistic people and criminal exploitation
The website for Preventing Criminal Exploitation Toolkit suggests that Autistic people may have certain vulnerabilities for criminal exploitation. Autism is often a diagnosis resulting in infantilisation. This means that Autistic adults may not have been taught the necessary skills to remain safe when accessing the community.
It is of no surprise then that Autistic people can often be found involved in county lines gangs and cases of mate crime and cuckooing. Autistic people represent promising targets for people with malicious intent.
Autism, mental health, and substance use
Mental health problems can be observed in the Autistic community at significantly higher rates than in the general population. No matter what type of mental health problem you measure, you will find increased rates in Autistic demographics (Lai et al, 2019). Besides the factors mentioned in this article, I have also co-authored an article with Tanya Adkin about the increased rates of trauma in Autistic populations.
Substance use is also another notable area where Autistic people are likely to be found. Weir et al (2021) found that Autistic adolescents and adults were more likely to report self-medicating with recreational drugs. This, of course, feeds back into increased rates of suicidality and early mortality.
Conclusion
The issues discussed in this article are not a conclusive list of the challenges facing Autistic people. Within the scope of autism is a need for total systemic change from the foundations up. Rather than focus on surface level accommodations to make current systems accessible, it is necessary to work towards a new society wherein sustainability and neurocosmopolitanism are key tenets.
We are living in the masters house, and no amount of repainting the walls and laying new carpet is going to change that. If we want a world where people have equal access, we have to dismantle the masters house and replace it with something of our own design. There is a better world available to us, but it will take a lot of hard work to get there.
#ItsNotOkToNotBeOk
References
Botha, M., & Frost, D. M. (2020). Extending the minority stress model to understand mental health problems experienced by the autistic population. Society and mental health, 10(1), 20-34.
Lai, M. C., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., … & Ameis, S. H. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis. The Lancet Psychiatry, 6(10), 819-829.
Lund, E. M. (2021). Examining the potential applicability of the minority stress model for explaining suicidality in individuals with disabilities. Rehabilitation psychology, 66(2), 183.
Malik-Soni, N., Shaker, A., Luck, H., Mullin, A. E., Wiley, R. E., Lewis, M. S., … & Frazier, T. W. (2022). Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood. Pediatric Research, 91(5), 1028-1035.
Shaw, S. C., Carravallah, L., Johnson, M., O’Sullivan, J., Chown, N., Neilson, S., & Doherty, M. (2023). Barriers to healthcare and a ‘triple empathy problem’may lead to adverse outcomes for autistic adults: A qualitative study. Autism, 13623613231205629.
Weir, E., Allison, C., & Baron-Cohen, S. (2021). Understanding the substance use of autistic adolescents and adults: a mixed-methods approach. The Lancet Psychiatry, 8(8), 673-685.
