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Children with autism grow up, adults with autism grow old

Lena Nylander's latest blog entry

[Posted on 15 May, 2018 by Lena Nylander]

There is still much more research being done on autism in children, and on children with autism, than on adults with autism. The research we have available today indicates that autism, in the (overwhelming) majority of cases, persists as a diagnosable disorder into adulthood. Logically this would mean that the number of adults with autism should be greater than the number of children and adolescents with autism. Adulthood lasts much longer than childhood – 75% of an average life expectancy is spent as an adult. We often say that autism is a lifelong disorder, even though no studies have actually followed up people with autism throughout their entire lives.

It is quite self-evident that there are elderly people – by elderly I mean people older than 55-60 years of age – who have autism, but we know next to nothing about them. There was a case study of a few older people with autism in 2006 (1), and since then we have seen some more research on this subject, particularly from the Netherlands. There is so little research into this area that some have argued ageing in autism to be a virtually unknown area (2). The (British) National Autistic Society has recognised this shortcoming and tried to alleviate it, for example by providing affected individuals with relevant knowledge through an e-book downloadable via the organisation’s website. The (Swedish) Autism and Asperger Association also has a document on elderly individuals with autism (3), directed at staff and friends/family.

Many of us have become aware of the existence of older people with autism across different contexts. Virtually every time I give lectures to municipality and county staff I get questions about elderly people – about things like growing dementia, disease panorama and the needs of elderly people with autism. It is not uncommon for the autistic disorder to be undiagnosed in these age groups. In my work with adults with intellectual disability and challenging behaviours, I come into contact with a number of middle-aged and elderly people who more or less always have autism, albeit undiagnosed and undocumented. Getting a proper autism diagnosis can have a major impact on environmental treatment and demands and thus bring about positive changes regardless of age!

A recently published registry study (4) produced certain data about elderly people with autism spectrum disorders/ASD in Sweden. The study was based on the LSS (the Swedish Act concerning Support and Service for Persons with Certain Functional Impairments) registry, while information on diagnoses, healthcare contacts and medical prescriptions was collected from other registries. We found that in all of Sweden there were 601 people over the age of 55, i.e. born in 1957 or earlier who had received LSS support and who had an ASD diagnosis registered between 2002 and 2012. The oldest person was 96 years old. A bit over half of these people had no registered diagnosis of intellectual disability. Half of them had received some psychiatric diagnosis, the most common ones being affective disorders (depression or bipolar disorder), which occurred in 20% of all cases. Psychotic disorders had been diagnosed in 12% of all cases, but no less than 72% were being treated with antipsychotic medicine, and 90% with some kind of psychopharmaceuticals. People with Asperger’s syndrome especially were often in contact with specialised psychiatric services.

This registry study shows that there are indeed elderly people with autism, and that they are often treated by psychiatric services and given psychopharmaceuticals. As usual, and perhaps in particular with regard to this age group, it is fair to say that more research is needed – we still know very little about how many they actually are, how they live and what kind of needs they have. In addition, autism is likely underdiagnosed among older age groups.

1. James et al (2006). Diagnosing Asperger’s syndrome in the elderly: A series of case presentations. Int J Geriatric Psychiatry, 21, 951-960.

2. Perkins & Berkman (2012). Into the Unknown: Aging with Autism Spectrum Disorders. Am J Intellectual and Developmental Disabilities, 117, 478 – 496.

3. Mats Jansson och Lena Nylander. Äldre med autism, Autism- och Aspergerförbundet 2015.

4. Nylander et al (2018). Older Adults with Autism Spectrum Disorders in Sweden: A Register Study of Diagnoses, Psychiatric Care Utilization and Psychotropic Medication of 601 Individuals. J Autism Developmental Disorders.

This is a blog. The purpose of the blog is to provide information and raise awareness concerning important issues. All views and opinions expressed are those of the writer and not necessarily shared by the GNC.