Autism, ageing, and premature death / by Erich Kofmel

7 April is World Health Day. In 2017, the World Health Organization (WHO) decided to dedicate that day to "Depression". To commemorate both the United Nations' World Autism Awareness Day (2 April) as well as World Health Day, Autistic Minority International organized a public side event/thematic briefing for the members of the UN Committee on the Rights of Persons with Disabilities on Monday, 3 April 2017, 1.45-2.45 pm, at Palais des Nations, the European headquarters of the UN, in Geneva, Switzerland.

Theme: "Ageing and Premature Death on the Autism Spectrum"

Speakers: Wenn Lawson, psychologist, researcher, lecturer (Australia), Cos Michael, autistic autism consultant (United Kingdom), Alanna Rose Whitney, Autistic Acceptance Activism Alliance (Canada). Chair: Erich Kofmel, President, Autistic Minority International.

This was our fourth annual side event held during the spring session of the Committee mandated to monitor the implementation of the UN Convention on the Rights of Persons with Disabilities (CRPD) in all 177 countries that have ratified it. To the best of our knowledge our event was once more the only commemoration of World Autism Awareness Day at the United Nations in Geneva. All other related UN-based activities were concentrated in New York, even though major decisions with regard to autistic children and adults are made in Geneva, both in the human rights mechanisms and at the WHO. We therefore believe that it is important that actually autistic persons show presence here as well, on this our day.

According to the WHO, depression is the leading cause of disability worldwide. More than 300 million people are living with depression, and even in high-income countries 50% of people with depression do not get treatment. Depression is an important risk factor for suicide, which claims over eight hundred thousand lives each year, 75% of them in low- and middle-income countries. Every 40 seconds someone dies by suicide. It is the second leading cause of death among 15-29-year-olds. There are more deaths from suicide than from war and homicide together.

Many autistic persons never reach old age, falling victim to depression and suicide much earlier in their lives. We believe that depression and suicide in our community are the direct result of unmet needs and a lack of acceptance of autism. Suicide should be seen as a response to a society that is not accepting of autistic persons at all. As autistic self-advocates we believe that autism is not a disorder that needs to be cured or should be stigmatized, but a lifelong neurological difference that is equally valid.

Our previous side events were concerned with moving from autism awareness to autism acceptance (2014), the worldwide pain and sorrow caused by medical experimentation on autistic children (2015), and the devaluing of autistic behaviours and the use of physical and mechanical restraint and seclusion in schools (2016). These themes echoed throughout 2017's presentations. All the experiences we previously laid out before the Committee contribute to a sense of doom and futility that causes depression and suicidal ideation in autistic individuals.

Even though the speakers last year hailed from western countries, autistic persons are one percent of the population in any given country, albeit many of us remain undiagnosed or misdiagnosed due to a shortage of medical professionals qualified to diagnose autism in less developed countries. Many of us are counted for in suicide statistics the world over, without our deaths ever being linked to autism or the societal attitudes and barriers we faced and weren't able to overcome. Ours is an often hidden disability, and our deaths are hidden also.

No other age group illustrates the pressures exercised on us to hide and pretend to be "normal" as much as that of older persons on the autism spectrum, who are nearly invisible. With Asperger syndrome in particular not being diagnosed before the mid-1990s, most autistic adults, who in their majority are not intellectually disabled, never received a diagnosis as a child. Many previously undiagnosed or misdiagnosed adults now finally get an autism diagnosis, often subsequent to a child or grandchild being diagnosed as being on the autism spectrum. Regardless, little attention is paid to autistic adults and even less to elderly autistic persons. When talking about autism, most people still only think of children.

In many countries, support and services for autistic persons end when they reach adulthood. Families are growing increasingly concerned about what will happen to their children and dependent autistic adults when they are not able to take care of them anymore. Autistic adults may age prematurely, and research found that on average we die decades earlier than non-autistic persons, whether from suicide, frequent co-morbid health conditions and a lack of access to autism-appropriate health care, filicide (by relatives) or homicide (by caregivers).

Our side event and thematic briefing therefore sought to address health risks, premature mortality, ageing, and the rights of older persons on the autism spectrum from the perspective of the CRPD. All the examples presented from any one country were equally applicable to all other countries, in their respective context. The geographic origins of our speakers were not meant as a show of disrespect for other cultures and socio-economic situations, but owed to the uneven distribution of awareness of and knowledge about autistic adults and ageing on the autism spectrum.

It may seem frivolous also to talk about premature mortality in the autistic population when viewed from the perspective of countries with a much lower life expectancy in general, for persons with or without disabilities alike, but ultimately the right to life guaranteed by the CRPD applies to all, in all contexts, and any circumstances unduly shortening the life of persons with disabilities anywhere equally demand our urgent attention.

Autism in adulthood and old age may be hidden in most parts of the world, and our deaths may only be counted in suicide statistics, but those children everywhere diagnosed as part of the so-called autism "epidemic" will soon grow up and grow old and join us in demanding autism acceptance and an end to stigma and prejudice against autistic people. Many of us will be consumed by the fight for equality and succumb to depression, but others will take our place and fight on. We may die as individuals, but the worldwide autistic community will only grow stronger with age.

(Speakers' presentations are available upon request.)