Published on: 2026-06-15
Source: United Nations – United Nations –
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When researcher and activist Dina Gassner came for cataract removal surgery, she warned the doctors in advance: she needed dimmed lighting, less noise, and a separate space for recovery after the procedure. During the first visit, the clinic fulfilled all requests – a quiet room was prepared for her, the light brightness was lowered, and the staff adapted the treatment process. But just a week later, during the second visit, everything turned out differently.
According to Gassner, the healthcare worker refused to take her needs into account and doubted the feasibility of adapting the conditions. For her, this became yet another example of how exhausting and traumatic contact with the healthcare system can be for a person with an autism spectrum disorder (ASD).
“We are dealing with an injury caused by excessive administrative burden, an injury from constant devaluation and distrust of patients’ words, as well as the consequences of inadequate medical management,” Gassner said at the UN headquarters event.
For her, this case was not an exception – rather a reminder that the system still understands the needs of adults with autism.
“Children with autism grow up into adults with autism”
And in many ways this is related to the history of the diagnosis itself. For a long time, autism was considered a form of childhood schizophrenia or a variety of intellectual disability. In the official Diagnostic and Statistical Manual of Mental Disorders (DSM), autism was included only in 1980 – as a separate condition, not related to schizophrenia.
Today, children who were diagnosed at an early age enter mature life and gradually reach middle and old age. This is precisely where the new challenge lies: the world has never seen such a scale before, and healthcare, social support, and educational systems have been created without taking this reality into account.
A parallel event within the framework was dedicated to this topic.Conference of the States Parties to the Convention on the Rights of Persons with DisabilitiesAt the UN headquarters. Experts warned: millions of people with autism are already adults, when particularly important access to medical care, support for independence, and long-term solutions in the field of education.
The chief scientific officer of the Autism Research Institute, Steven Edelson, reminded that for decades the main focus has been on early diagnosis, education, and support of children.
“Children with autism grow up to be adults with autism, and adults with autism grow old,” he emphasized.
According to Edelson, the support systems were not ready for this.
Connection with physical and mental health
Malta’s Disability Rights Commissioner Christopher Palmer presented the results of the expert meeting on autism and aging, which took place at the UN last autumn.
“Today, the first generation of people diagnosed with autism in childhood is entering adulthood. We have never seen such a scale before, and our healthcare and social support systems were not created with this reality in mind,” Palmer noted.
According to him, about 90 percent of people with autism over the age of 40 have never received an official diagnosis. This means that for decades many have been trying to understand themselves without explanations, support, or access to adapted services.
Experts paid special attention to health. According to the presented data, elderly people with autism more often suffer from cardiovascular diseases, sleep disorders, metabolic problems, and psychological disorders. A particular concern is the connection between autism and dementia.
According to data voiced by Palmer, among people with autism over 64 years old, the prevalence of dementia can reach 35 percent compared to approximately 10 percent among peers without autism.
Medical system reforms
Neurologist Margaret Bauman believes that one of the main problems lies in the unpreparedness of the medical system itself.
“Finding a general practice doctor who really understands autism is like looking for a needle in a haystack,” she said.
According to Bauman, medical universities practically do not teach how to work with autistic adults. As a result, patients face misinterpretation of symptoms, difficulties during examination, and challenges even during a regular visit to medical institutions.
Psychologist Kimberly Armstrong drew attention to another dimension of the problem – mental health. According to her, many adults with autism have been trying for years to adapt to a world created without taking into account the features of their perception. This leads to anxiety, emotional exhaustion, and a deterioration in quality of life.
Armstrong believes that the focus should shift from attempts to change the person themselves to adapting the surrounding environment – taking into account sensory characteristics, reducing overload, and creating conditions for full participation in social life.
Experts emphasized that solutions already exist. Among the proposals are training medical workers, implementing individual care plans, adapting medical institutions, creating a calmer and more predictable environment for patients, using special medical passports, and developing mechanisms for supported decision-making.
But the main thing, according to the participants of the meeting, is to stop talking about people with autism without their involvement. Policies, research, and services should be developed jointly with those who know these problems not from textbooks, but from their own experience.
Aging of people with autism can no longer be considered a narrow topic for specialists. It is about human rights, access to medical care, and the willingness of society to take into account the needs of people at all stages of life.
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