© Unsplash/A. Spratt “Children with autism grow into adults with autism, and adults with autism grow older.” From childhood to adulthood: how the needs of people with autism change Healthcare
When researcher and activist Dina Gassner went in for cataract surgery, she warned doctors in advance that she wanted dim lighting, less noise, and a private space to recover from the procedure. During the first visit, the clinic took into account all the requests – they prepared a quiet room for her, reduced the brightness of the light, and the staff adapted the treatment process. But a week later, during the second visit, everything turned out differently.
Gassner said the provider refused to accommodate her needs and questioned the need for accommodations. For her, it was yet another example of how draining and traumatic it can be for someone with autism spectrum disorder (ASD) to interact with the health care system.
“We are dealing with the trauma of excessive administrative workload, the trauma of constantly being devalued and mistrusted by patients, and the consequences of poor medical management,” Gassner said at the event at headquarters. UN.
For her, this case was no exception – rather a reminder that the system still poorly understands the needs of adults with autism. For a long time, autism was considered a form of childhood schizophrenia or a type of mental retardation. Autism was only included in the official classification of mental disorders (DSM) in 1980 – as a separate condition not related to schizophrenia. Today, children who were diagnosed at an early age enter adulthood and gradually reach middle and old age. This is where the new challenge lies: the world has never seen such a scale before, and health care, social support and care systems were created without taking this reality into account.
A side event at the Conference of States Parties to the Convention on the Rights of Persons with Disabilities at the UN headquarters was devoted to this topic. Experts have warned that millions of people with autism are entering an age when access to health care, support for independence, and long-term care solutions are especially important. and adults with autism are aging,” he emphasized.An expert at the Disability Rights Commission of Malta, Christopher Palmer, presented the results of an expert meeting on autism and aging, held at the UN last fall.
“Today, the first generation of people who were diagnosed with autism in childhood is entering adulthood. This is a scale we have never seen before, and our health and social support systems were not designed to accommodate this reality,” Palmer said.
About 90 percent of people with autism over 40 have never received a formal diagnosis, he said. This means that many spend decades trying to figure out their differences without explanation, support or access to tailored services.
Experts paid special attention to health. According to the data presented, older people with autism are more likely to have cardiovascular diseases, sleep disorders, metabolic problems and mental disorders. Of particular concern is the link between autism and dementia.
According to Palmer, the prevalence of dementia among people with autism over 64 years of age may be as high as 35 percent, compared with about 10 percent among peers without autism.
Health care reforms systems
Neurologist Margaret Bauman believes one of the main problems is the unpreparedness of the medical system itself.
“Finding a general practitioner who really understands autism is like looking for a needle in a haystack,” she said.
Po According to Bauman, medical universities provide virtually no training in working with adults with autism. As a result, patients experience misinterpretation of symptoms, difficulties in testing, and difficulties even during routine health care visits.
Psychologist Kimberly Armstrong drew attention to another dimension of the problem: mental health. According to her, many adults with autism spend years trying to adapt to a world that was created without taking into account the peculiarities of their perception. This leads to anxiety, emotional exhaustion and a deterioration in the quality of life.
Armstrong believes that the focus should shift from trying to change the person himself to adapting the environment – taking into account sensory differences, reducing overload and creating conditions for full participation in society.
Experts emphasized that solutions already exist. Among the proposals are the training of medical workers, the introduction of individual care plans, the adaptation of medical facilities, the creation of a calmer and more predictable environment for patients, the use of special medical passports and the development of supported decision-making mechanisms.
But the main thing, according to the meeting participants, is to stop talking about people with autism without their participation. Policies, research, and services must be developed in collaboration with those who know these issues not from textbooks, but from experience.
Aging in people with autism can no longer be considered a niche topic for specialists. It’s about human rights, access to health care and the willingness of societies to address the needs of people at all stages of life.