Learning Disability Today
Supporting professionals working in learning disability and autism services

Loneliness and learning disability: is it a silent killer?

Trigger warning: suicide

Last May, research showed people under 30 years with autism and a learning disability had been choosing euthanasia in the Netherlands.

In most cases, those who chose to end their lives were older with illnesses like cancer, Parkinson’s, and the neurological disorder amyotrophic lateral sclerosis. But some were much younger and gave only their autism or learning disability as the reason they wanted to die.

Researchers in the Netherlands and the UK examined the records of more than 900 people who have ended their lives. They found that between 2012 and 2021, 60,000 people chose to die in the Netherlands. Dutch authorities released case files on 927 to show how their euthanasia policy works.

The researchers found 39 patients among the 927 who had autism and or a learning disability. Factors linked to their autism or learning disability were the sole cause given in 21% of cases. Five people aged between 18 and 29 were among those who chose to end their lives.

In 30 or 77% of the cases, loneliness and social isolation were listed as factors that led to the person’s “unbearable suffering” and plea for euthanasia.

Their whole lives lay before them and yet death was a more appealing prospect than anything the future might bring.

Wrong message about autism and mental health problems

Palliative care specialist at London’s Kingston University, professor Irene Tuffrey-Wijne, led the research. She said she had “no doubt” that those who ended their lives were suffering. But she questioned whether society was happy to send the message that “there’s no other way to help them and it’s just better to be dead”.

Tim Nicholls is the head of influencing and research at the National Autistic Society (NAS). He said “too many” autistic people can end up developing mental health problems like anxiety or depression because of loneliness.

Nicholls added: “We won’t accept a world where this is the case and that’s why we campaign so hard for autistic people to get the day-to-day support they need to live happy and fulfilled lives.”

The NAS say data from 2019 showed that 76% of autistic adults had asked for mental health support in the previous five years, but only 14% believed there were enough services to meet their needs.

Struggling with loneliness

Eleanor Bennett, 27, who runs marketing consultancy Competitive Insight, grew up amid domestic abuse and faced homelessness while she was still in her teens. She was diagnosed with autism at 21 and insists many with the condition want friendships, but struggle with social cues, communication and sensory issues.

At their worst, her feelings of loneliness resulted in a “direct loss of income and a decline in physical health”.

Bennett says she also has a tendency to question power structures and this has an impact on her ability to form relationships with people who are more accepting of them.

Eleanor Bennett says loneliness has impacted both her health and her finances.
Eleanor Bennett says loneliness has impacted both her health and her finances.

In an email she wrote, “If you are someone whose life has not followed a perfectly linear life script it can be very isolating to be someone who deconstructs societal ‘givens’ when others see no problem with accepting the world for what it is.”

Alongside her autism, Bennett also struggles with polycystic ovary syndrome (PCOS), which causes irregular periods and high levels of the male hormone androgen in your body. She said the condition caused the end of a relationship when she was not ready to meet the demands of starting a family.

Bennett says comedy and reading are two key elements of how she copes with loneliness. Immersing herself in non-fiction, psychology, psychiatry, sociology, biographies and stories of those who have “always felt different” has helped her deal with rejection.

In addition, making connections through a “found family” and “discovering others that relate to you who don’t lead with judgment and harshness”, has helped her cope, said Bennett.

She added, “Over the course of a lifetime, you will eventually find others who speak your language, understand your sense of humor and communication style. It won’t always be hard and you won’t always find you are running on empty to be understood.”

Feelings of powerlessness and autism

Last year Dr Kana Umagami, who has autism and describes herself as multiply neurodivergent, led a team at University College London (UCL) that reviewed the research on loneliness and autism.

Autism researcher Umagami found factors linked to increased loneliness include autistic traits themselves, anxiety, depression, suicidal thoughts, negative experiences, feelings of powerlessness, a lack of autism understanding and acceptance, sensory avoidance, camouflaging and unemployment.

On the other hand, having relationships, experiencing fewer problems socially, positive views and acceptance of oneself, being a woman and online gaming were all factors linked to combating loneliness.

Umagami’s review found autistic adults wanted social connections with others even though they found them challenging. It also found that autistic adults reported higher scores on measures of loneliness than neurotypical peers.

She said the finding should be treated with caution as most of the research she reviewed had not developed measures of loneliness specifically designed for or validated by autistic people.

The work also showed the value of autistic adults having social relationships to alleviate loneliness. Factors like shared interests, recognition and acceptance and a sense of safety made it easier for them to interact with others.

Umagami’s research, published in the journal Autism, also pointed up how autistic people often found value in relationships with other autistic people. These relationships are often seen as easier and more comfortable and provide a sense of belonging.

Umagami herself provides peer support and mentoring for other autistic people and believes her review supports growing calls for autistic peer support.

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