Welcome
Hello, and welcome to The Autistic Writer. With this website, it is my hope to explain what autism is, what the real lived autistic experience is, and to dispel the many harmful myths about autism. But why should you even care?
my story
At 50 years old, my life from the outside probably looked like a success story. Married, a son from a previous relationship with whom I was (and still am) very close, a mortgage, a car, a career in management with a big company, and making inroads into a writing career. But inside, I was in absolute despair and had fallen into a deep depression.
Two years later, having already left my management job for a band 2 admin position, and struggling to even pretend to hold myself together, I sat in a room with an occupational health GP, trying to explain how I was feeling, and how I felt my life was imploding. By sheer coincidence, this doctor had a professional background in autism. He spotted it straight away. I’ll never forget the moment he said, “I can’t give you an autism diagnosis, that’s not why I’m here today. But as far as I’m concerned, you are 100% on the spectrum.”
Nineteen months later, I sat in another office as an autism specialist confirmed my diagnosis: Autism Spectrum Disorder (formerly Asperger Syndrome). I fell apart in tears. The specialist thought I was upset about being autistic. Far from it. I wept from relief at finally getting an answer as to why I had always felt so alienated from almost everything and everyone else in the world.
what is autism?
When anyone tries to explain anything about autism, it’s customary to start with the question, What is autism? But I’m not going to do that in this article. Instead, we are going to start with, Why should you even care about autism?
Why even care?
If you’re not autistic yourself, and you don’t have much to do with autistic people, it’s understandable that you might not see a reason to care about autism or autistic people. It simply might not seem relevant to you. But I’m going to tell you something that will change your mind.
fair warning
I won’t lie, this is not going to be a pleasant read, and some of the information here is upsetting. It’s the kind of information that cannot be sugar-coated or made pretty. But it’s information everyone needs to know.
two simple ideas
To understand why autism is relevant to everyone, you need to link up two really simple ideas. I’m going to tell you these ideas, and then I’ll go on to explain each of them in detail:
Idea 1: You might not know it, but I guarantee someone you care about is autistic.
Idea 2: Autistic people tend to die at a younger age than everyone else, and the reasons are horrifying.
Idea 1: Someone you care about is autistic.
How can I possibly guarantee that someone you care about is autistic? That can’t be true for everyone, can it?
If you go to Google or your other preferred search engine, and ask how many people are autistic, you’re almost certain to find various sources quoting a figure of 1 in 100 (1%). It has now entered the public consciousness that 1 in 100 people are autistic, and the figure gets cited again and again, from reputable outlets such as news agencies, with seemingly no one checking if that figure has been updated recently. It has.
The 1% figure comes from epidemiological research from 2011 (Traolach S. Brugha et al. Archives of General Psychiatry, 2011). Two things have changed since then. Firstly, the diagnostic criteria for autism widened, as understanding of autism improved (and continues to evolve). Secondly, greater awareness of autism and the plight of autistic people meant that increasing numbers of autistic individuals were being identified who might have previously been missed. These two changes have combined to show a sharp increase in the number of people receiving formal diagnoses of autism.
The lancet
A 2023 study published in The Lancet Regional Health Europe concluded that the true incidence of autism in the population is around double what had previously been thought. So, instead of 1 in 100 people being autistic, it started to look more like 1 in 50 (2%). However, that’s not the end of the matter…
identification of autistic children
Schools are currently more vigilant in looking for autism in children than in previous decades. This is really important, as an autistic child can find educational settings very difficult for a host of reasons. Difficulties arising at school can damage the educational prospects and life outcomes of autistic children if they are not fairly accommodated.
Over the last few years, the number of autistic children being identified as autistic (meeting the criteria for autism diagnosis) increased, according to the CDC (Centers for Disease Control) in the US, to 1 in 44, then 1 in 36, and more recently 1 in 31 (3.22%).
The UK does not provide figures for autism prevalence in the same way as we see from the CDC. While the most widely cited UK epidemiological studies have estimated autism prevalence at around 1% of the population, more recent administrative and service-use data indicate that rates of autism identification and diagnosis among children and young people are substantially higher than 1%.
There is no reason to think that the number of people who are autistic is increasing; it is simply that more autistic people are being identified and diagnosed as such. If the 1 in 31 figure is an accurate representation of the number of autistic people in society, then it will apply across all age groups and demographics; not just schoolchildren.
The true prevalence of autism in the population will almost certainly be higher than this, however. This is partly because there is still a reluctance or inability in some quarters to recognise autism in certain demographics. The myth that autism affects only white males persists, even among the medical professionals we rely on to refer people for autism assessments.
autistic women and girls
It is accepted that autism presents differently in females than in males. The reasons for this are complex, but undoubtedly have a lot to do with the different gender-based social pressures we all live under.
The differences in the ways autistic females present have compounded the myth that only (white) males can be autistic. This has led to a situation in which many autistic females have been unable to access autism assessments that are necessary for diagnosis. Worse, many autistic females are misdiagnosed with bipolar disorder or borderline personality disorder before eventually being given a correct diagnosis of autism.
Marginalised people
Autistic people from marginalised demographics, including racial minorities, and the LGBTQI+ communities also find it harder to get assessments and diagnoses.
cultural differences
There are other reasons why some autistic people are not identified as autistic, such as cultural pressures. For example, the behaviours that are expected of children in certain cultures (such as not making eye contact with adults) might obscure their autistic traits.
deflation
The barriers to identification and diagnosis of autism in some demographics have artificially deflated the reported figures for the prevalence of autism in the population. But for our purposes in this discussion, we will go with what appears to be a conservative estimate of 1 in 31 people (3.22%) being autistic.
Now, how many people in life do you care about?
your loved ones
Think about your family. Your children, parents, grandparents, aunts and uncles, siblings, and cousins. Think about your spouse or long-term partner, and romantic attachments from the past. Think about your friends. Think about old friends you no longer see, perhaps from school or otherwise in your childhood. Think about your fellow students from further or higher education. Or your work colleagues. Or people you played sports or other pastimes with. Take it even one step further; think about your favourite or most inspirational famous people; actors, athletes, writers, artists, etc.
Start totting up the numbers of the people you care about. It is likely to be more than you might first have thought. Much more than 31. Therefore, you can guarantee someone in the circle of people you care about is autistic. You might look at those people and think none of them behave in a way you consider autistic, but the fact is that many autistic people who were not diagnosed in childhood have learned to hide their autistic traits using autistic masking – a subject that will be covered here at a later date. Furthermore, some of the people you care about might have a formal diagnosis of autism, but have chosen not to reveal it.
There is no reason to think that the prevalence of autism in the population does not apply to your particular circle of people.
Now let’s talk about the life expectancy of autistic people, and the horrible suffering and deaths we endure…
Idea 2: Autistic people tend to die at a younger age than everyone else, and the reasons for that are horrifying.
If you go back to your search engine, and try to find out about mortality figures for autistic people, you’re going to be met with conflicting figures. Different research has thrown up different results. This happens for several reasons.
Reported figures can vary depending on which country the research was carried out in, when the research was conducted, which criteria for autism were recognised, and who was included. Some of the work has separated figures for autistic people who also have learning disabilities, for example. However, all research carried out on this issue agrees on one main point:
Autistic people tend to die at a younger age than the general population.
mortality rates in autistic people
There has been much misinterpreted data reported on this subject, and a lot of confusion has followed. So before we go any further, it’s worthwhile trying to understand that data correctly. Here is a summary of some research into mortality rates in the autistic population:
| Study / Review | Country | Main Finding | What It Actually Means |
|---|---|---|---|
| Tatja Hirvikoski(2016) | Sweden | Mortality risk about 2.5× higher than controls | Autistic people were more likely to die during the study period. Not a life expectancy estimate. |
| Christopher J. McDermott(2017) | USA | Mean age at death among autistic decedents was 36 years | Often misquoted as “life expectancy 36”. It was actually the average age of those autistic people who died during the study period. |
| Ferrán Catalá-López | International | Overall mortality risk about 2.4× higher | Combined results from multiple studies; found elevated risk from both natural and unnatural causes. |
| Laurence Forsyth | International | Every included study found increased mortality | Concluded mortality risk is elevated, but magnitude varies considerably. |
| Damian Santomauro | International | Suicide mortality nearly 3× higher | Particularly elevated among autistic people without intellectual disability. |
Some of the figures above could be, and have been, misinterpreted and sensationalised. The work by McDermott (2017) has been widely misinterpreted as saying the average life expectancy of autistic people is 36 years, but that is not what the research is saying. The figure was the mean (a type of average) age of autistic people who died during the study. This is not the same as life expectancy.
Mortality rate describes how likely people in a group are to die within a specific period (for example, per year or over a study follow-up), whereas life expectancy is an estimate of the average number of years a person in that group is expected to live based on age-specific mortality rates across their lifetime.
The fact that most studies in this area tell us that mortality rates in autistic people are around 2.5 to 3 times higher than the general population is alarming and distressing. But there has also been work done on autistic life expectancy.
autistic life expectancy
The National Autistic Society in the UK reports supporting University College London in research in this area. Here is a summary of their findings:
Life expectancy comparison (UK study – NAS summary)
Autistic people vs non-autistic comparison groups
| Group | Life expectancy | Difference vs non-autistic peers |
|---|---|---|
| Autistic men (no learning disability) | 74.6 years | ⬇ ~6 years |
| Autistic women (no learning disability) | 76.8 years | ⬇ ~6 years |
| Autistic men (with learning disability) | 71.7 years | ⬇ ~7 years |
| Autistic women (with learning disability) | 69.6 years | ⬇ ~15 years |
Compared to the general population:
Autistic people without a learning disability have a 6 years lower life expectancy.
Autistic men with a learning disability have a 7 years lower life expectancy.
Autistic women with a learning disability have a 15 years lower life expectancy.
note:
These are estimated averages, not fixed outcomes for individuals. The autistic group is based on diagnosed cases, which probably over-represents people with higher support needs. The larger gap in autistic women with a learning disability may reflect diagnostic under-identification of other autistic women, not necessarily a true biological difference.
Considering the fact that autism is not a disease, not an illness, the reduced life expectancy of autistic people is a troubling social and healthcare failing.
Now we will consider two further points: Firstly, the main causes of death for autistic people, and secondly, how autistic people are treated in medical settings.
Causes Of Death
The three leading causes of death for autistic people are:
1. Epilepsy.
2. Suicide.
3. Heart disease.
Suicide
Autistic people are faced with a constant barrage of sensory overload that keeps us in a state of almost constant anxiety. We struggle with many social elements of life that non-autistic people find ordinary and even thrive in. This leads to many autistic people being out-grouped, shunned, and left lonely and isolated.
Educational settings are often highly problematic for us, which often means we don’t get the education we need, which damages our life prospects.
In work settings, our different outlook and interaction style often means we get overlooked for promotion or development. In fact, autistic people are far more likely than the general population to be unemployed or in low-paid work. This inevitably leads to the statistics that show autistic people are more likely than everyone else to experience financial problems. The National Autistic Society reported findings relevant to this in the 2024 Buckland Review of Autism Employment:
- Just 3 in 10 autistic adults are in work, compared to 5 in 10 for all disabled people and 8 in 10 for non-disabled people.
- Autistic people face the largest pay gap of all disability groups.
- Autistic graduates are twice as likely to be unemployed after 15 months as non-disabled graduates. Only 36% finding work in this period.
- Autistic graduates are most likely to be overqualified for the job they have.
- They are most likely to be on zero-hour contracts and least likely to be in a permanent role.
Furthermore, autistic people are more likely than the general population to have various health problems, too.
Large-scale physical health comorbidity study (UK), Ward et al., Molecular Autism (2023)
This study (there have been others reporting similar data) showed autistic people have significantly higher rates of physical health conditions across many body systems. This includes: liver, kidney, and autoimmune conditions, gastrointestinal conditions, neurological conditions, and endocrine disorders.
In addition, we face constant prejudice and discrimination, both online and in the real world.
This combination of problems ensures that most if not all autistic people end up clinically depressed and acutely anxious. We are constantly on high alert, something known as hyper-vigilance. Our baseline stress level is far higher than that of most non-autistic people, and it is debilitating. Depression and anxiety are leading contributory factors in suicide. .
Think about this in terms of those people you care about who, whether you know it or not, will be autistic. Is this the life you want for them – a life of mental, physical, and social struggle, and a shorter life? This is a particularly important point in relation to children in your circle who might only just be starting the process of diagnosis.
Epilepsy
Epilepsy is an umbrella term for a group of neurological disorders, typically resulting in epileptic seizures.
Epilepsy can be genetic or can be acquired, for example, as a result of a stroke. Epilepsy is more common in autistic people than in the general population, but not all autistic people have epilepsy, and not all people with epilepsy are autistic.
Epileptic seizures can result in death. Although there is no cure for epilepsy, it is treatable with drugs, surgery, implants, and diet, to some extent. In light of these treatment options, the fact that epilepsy remains a major cause of death for autistic people is deeply problematic.
Many people with epilepsy find that increased stress and anxiety makes them more prone to seizures. As already mentioned, autistic people experience a constant high level of stress and anxiety.
Heart Disease
Heart disease is a major cause of death for all people, of course, not just autistic people. But the relevant point here is that the chronic stress and anxiety experienced by autistic people are important contributory factors to heart disease.
Medical Treatment
In an ideal world, all people would be treated equally in medical settings. But we do not live in an ideal world. Different demographics experience different levels of success in medical treatment, and different levels of mortality.
Put simply, if you are from a minority racial or ethnic background, or have a disability, or if you are autistic, you’re more likely than other people to die when being treated for a medical crisis.
A profound example of this type of discrimination is the case of Oliver McGowan, a young autistic man who died in hospital after inappropriate treatment which happened directly against his wishes and his parents’ wishes.
Oliver’s proud and brave mother, Paula, has fought long and hard to bring about change so that this cannot carry on happening to autistic people and people with learning disabilities. This has led to the mandatory Oliver McGowan training in the UK.
During the second wave of the covid pandemic, there was the scandal of “do not resuscitate” orders being applied to autistic people (and other disabled people) without their consent.
This is part of a broader context of prejudice towards autistic people, where autistic lives and experiences are at times afforded less value and consideration than those of the non-autistic majority. Apply that to the knowledge that someone you care about is autistic.
The Assumption Of Incompetence
The prejudice and unconscious bias faced by autistic people often mean we are assumed to be incompetent when it comes to making decisions about our own wellbeing. It is often assumed we lack the capacity to make decisions about our own health and welfare.
This can lead to inadequate or even harmful care and treatment (or lack thereof), as seen in the case of Oliver McGowan. But there is a further effect. Often, autistic people can become reluctant to seek treatment for health problems, due to the unconscious biases and lack of understanding from health professionals. This can be catastrophic in instances of serious illness.
Someone you care about is autistic. And that means they’re going to suffer; not because of their autism, but because of how the world will treat them.
It is relevant to you. The only way to improve the lives of the autistic people you care about is to embrace them, to understand their autism, and to work to ensure autistic people are treated fairly.
That’s all for this time. Take care.
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