Sondra Williams is no stranger to medical diagnoses and treatments. As a teenager and young adult, she spent a decade in and out of mental-health facilities, medicated for conditions including schizophrenia and social anxiety.
‘I am not a broken version of normal’ — autistic people argue for a stronger voice in research
It wasn’t until she was in her late 30s that she finally received a diagnosis that made sense.
By then, she had married and had four children. After two of her kids were diagnosed with autism spectrum disorder (ASD), doctors reviewed her medical history. Williams, too, met the criteria for the neurodevelopmental condition.
“When I finally got the diagnosis, it felt like being in labour as a mom, being in labour for most of my life and finally delivering that baby, that relief,” says Williams, who lives in Dublin, Ohio. “It was a relief to me knowing that my differences had a meaning to it. And it wasn’t me being crazy or mentally ill. It had a rhyme and reason to it.”
The diagnosis answered some questions — but raised others. Williams, now 63, has recently been diagnosed with type 2 diabetes and high blood pressure, conditions that some studies have suggested are more common among autistic people than in the general population. “I’m terrified of my future because I’m plagued with so many health issues,” says Williams.
The number of older autistic people is surging. A study analysing data from more than 200 countries, published online last year1, reported that the number of autistic people aged 70 or older rose from 894,700 in 1990 to nearly 2.5 million in 2021. This figure is estimated to double to 5.1 million people by 2040, according to the study.
Some of the increase is simply because the world’s population is growing. But awareness of and screening for autism have also improved. Another important factor is a change in the diagnostic criteria that was made about a decade ago: before this, autism was predominantly diagnosed in early childhood; the revision meant that adults could be given the diagnosis.
And yet, researchers know almost nothing about how autism might affect people as they age. Only 0.4% of studies of autism since 2012 included autistic people in midlife or old age2.
The fact that Williams and other autistic adults live with such uncertainty concerning their health stems from two blind spots in scientific research. Firstly, the study of autism has historically focused on children and adolescents. Secondly, studies on ageing, which have ramped up in recent years, often exclude autistic people.
... continue reading