No-one declares a lockdown; there’s not a spike protein in sight. You will not hear it mentioned in conversation, governments take no action, and those who fall ill test negative...until it’s too late.

Why haven’t we heard about it? The reason is simple, and devastating: diagnosis. Or lack thereof.

Autistic Spectrum disorder (ASD) is a lifelong condition that affects brain development. Autistic people are as diverse as the general population, but the national autistic society lists behavior patterns that many people with ASD share, like “social communication and interaction challenges, repetitive behavior...over and/or under sensitivity...[and] extreme anxiety.”¹

Perhaps you picture Dr. Sheldon Cooper in The The Big Bang Theory or Christopher in The Curious Incident of the Dog in the Nighttime. Many people with ASD do not present this way; they develop what some would call “normally” with apparent ability to “normally” interact with others and discern emotion. But in secret, they struggle with sensory overload; maybe crowds, noises or unexpected changes cause them profound anxiety. They struggle to fit in and appear just like everyone else.

These people persevere through a world that is not built for them, but they ‘mask’ their true selves well enough to appear neurotypical (at least for a while). As a result, their autism flies under the radar, and they remain undiagnosed. Worse yet, recent research published in October’s JAMA Pediatrics² suggests that they learn so well that they can fall out of the typical diagnostic metrics.

It's these undiagnosed autistic adults who are at the center of this epidemic - and they are dying.

According to the widely circulated numbers, 1 in every 100 children worldwide are on the autism spectrum. However, recent CDC reports indicate that the number is closer to 1 in every 36.³

In 2022, the University of Cambridge conducted a study into the “unacceptably high” autistic suicide rate.⁴ The research included data in cases where victims showed “elevated autistic traits...indicating undiagnosed autism.”⁵ This made up 10% of cases studied. Further research involving victims’ families suggested that this figure was closer to “41%.”⁶ To put this in perspective, that figure is 19 times higher than the rate of (diagnosed) Autism in the U.K.

Faced with such terrifying figures, shouldn’t we ask ourselves why undiagnosed autistic people are at such a high risk of suicide? What is it about that formal diagnosis that makes so much difference to autistic lives?

A missed diagnosis represents a missed opportunity to provide support. Undiagnosed autistic people face many challenges but cannot access specialist support that’s available to those with a formal diagnosis. Their families, friends and colleagues remain unaware of their differences and expect them to function (and operate) in a neurotypical way, which puts them under immense pressure.

When they fail to adhere to neurotypical ‘rules,’ a diagnosis might explain autistic challenges and highlight neurodiverse strengths. Without one, autists view their difference as a personal failing. This could lead many to develop low self-esteem, anxiety and depression; illnesses which greatly increase an individual’s suicide risk.

Where Socrates would posit that an “unexamined life is a life not worth living,” some might argue that lack of understanding of what truly makes one tick would cause true examination to be impossible. When you add in the trauma experienced by this incongruence, the dangers are clear.

Research suggests that Autistic brains experience more trauma compared to Allistic brains. In their 2020 study, M.K Pelton et al found autistic people reported “more lifetime trauma” overall and that their chances of attempting suicide were “increased” if their trauma- particularly emotional abuse and neglect- occurred during childhood.⁷

Autistic brains change more after a traumatic experience. They also experience trauma responses where allistic brains might not, due to different ways they respond to emotional and sensory stimuli.⁸

Pelton et al also found that autistic people “reported stronger feelings of perceived burden [and] thwarted belonging.”⁹ Many people who suffer from suicidal ideation feel this guilt and cite ‘being a burden’ to their loved ones as a reason to take their life. With so many neurodiverse people describing such feelings, we should all be concerned.

Where can we go from here? Without a diagnosis, autistic people cannot ask their schools and employers for accommodations. Accommodations in this context refer to “adjustments to a job or work environment that make it possible for a disabled person to perform their duties.”¹⁰ However, disability protections laws often do not go far enough to actually protect against wanton neglect of the statues and provide justice for the disabled community.

Universal Design (UD) is one way to achieve the equity deserved amongst this marginalized community. But UD falls into the “cost restrictive” loopholes of most accommodation laws. There are other ways to achieve the type of inclusion that the world desires; that way is the micro-accommodation.

Micro-accommodations are (as the name suggests) small-scale accommodations that, when implemented, make our public services autism-friendly.¹¹ The University of Washington recommends schools and workplaces offer “clearly established and ordered routines” and provide “noise-canceling headsets...a quiet area... visual schedules’ to all students as a matter of course.¹²

These changes might make life easier for adults with autism by providing them with equipment and resources to navigate the world around them. What’s more, it could begin the process of normalizing neurodiverse needs in public and in private.

Such resources must be available to everyone, rather than exclusive to those people with an ASD diagnosis, so that undiagnosed folks can benefit too. But there might be even simpler ways to make a difference.

It’s important to remember that national healthcare, in countries that have it, is stretched beyond breaking point, and private healthcare is a luxury many simply cannot afford. If someone suspects they are autistic, it can be years before local services can get them into a neuropsychologist’s office for an assessment.

What’s more, many neurodiverse people feel they do not need (or perhaps want) a diagnosis. These people are as deserving of our consideration (and support) as those actively seeking a diagnosis.

Let’s normalize clarifying questions, so that we *ahem* literally-minded people can complete assigned tasks without doubt. Rather than scolding all “inattentive” students and workers, provide visual or written instructions as well as verbal ones so that everyone in the team can process the information and fully understand the set task. Limit your use of inference in favor of clear, concise language; those of us with ASD will spend less time decrypting your irony, and you will spend less time correcting our mistakes.

Be aware that some autistic people may not recognize their own feelings of distress. Give them a non-judgemental space, where they can unmask and express themselves in whatever way they need to without fearing repercussions.

Every mind works differently and no two brains, neurotypical or neurodiverse, are ever the same. Micro-accommodations could benefit allistic brains too, as well as those of other neurodiverse people, people with mental health issues, people living with Dementia and more.

Freeing ourselves from strict adherence to social rules and etiquette might just change the world for the better. The difference is that, for undiagnosed autistic adults, it could be a matter of life or death.

¹ The National Autistic Society What is Autism? https://www.autism.org.uk/advice-and-guidance/what-is-autism Accessed 11/10/2023 at 10:42am GMT.

² Harstad, Elizabeth, MD, MPH, et. al. "Persistence of Autism Spectrum Disorder From Early Childhood Through School Age” JAMA Pediatr.
doi:10.1001/jamapediatrics.2023.4003 Published online October 2, 2023.

³ National Institute of Mental Health. Autism Spectrum Disorder (ASD) https://www.nimh.nih.gov/health/statistics/autism-spectrum-disorder-asd#part_2547 Accessed 18/11/2023 at 1:05pm GMT

⁴ Cassidy, S., Au-Yeung, S., Robertson, A., Cogger-Ward, H., Richards, G., Allison, C., . . . Baron-Cohen, S. (2022). Autism and autistic traits in those who died by suicide in England. The British Journal of Psychiatry, 221(5), 683-691. doi:10.1192/bjp.2022.21

⁵ Cassidy, S. et al. Ibid.

⁶ Cassidy, S. et al. Ibid.

⁷ Pelton, M.K., Crawford, H., Robertson, A.E. et al. Understanding Suicide Risk in Autistic Adults: Comparing the Interpersonal Theory of Suicide in Autistic and Non-autistic Samples. J Autism Dev Disord 50, 3620–3637 (2020). https://doi.org/10.1007/s10803-020-04393-8

⁸ Pelton, M.K., et al. Ibid.

⁹ Pelton, M.K., et al. Ibid.

¹⁰ The U.S Department of Labour, ‘Job Accommodations’ https://www.dol.gov/general/topic/disability/jobaccommodations accessed 16/10/2023, 08:24am GMT.

¹¹ https://www.humanities101.org/resources

¹² University of Washington 992-2023 DO-IT, (UW). https://www.washington.edu/doit/what-are-typical-challenges-and-accommodations-students-autism-s pectrum-disorder accessed 16/10/2023 at 08:36am GMT.