More Research
I keep a Word document open on my desktop and paste interesting articles that I think I'm going to write about sometime. But I haven't written anything for a while so I thought I'd just post the articles for anyone else who enjoys doing a deep dive on autism.
Mindshift in autism: a call to professionals in research, clinical, and educational settings
https://www.frontiersin.org/articles/10.3389/fpsyt.2023.1251058/full
The whole thing is interesting but here are some excerpts:
"Autistic adults are a marginalized group of people that experiences discrimination and stigma. Like other marginalized populations, these factors lead to poor outcomes in health, education, employment, quality of life, and community inclusion. However, researchers, clinicians, and educators—as well as the general public—usually frame autism itself as the poor outcome rather than Autistic people as a disparity group...Viewing autism as an illness can additionally communicate that Autistic people are inferior to allistic [i.e., non-Autistic neurodivergent and neurotypical people, which may result in internalized ableism in Autistic people."
"This perspective allows for the needs of all Autistic adults (i.e., across all levels of support need and intellectual ability) to be viewed without discrimination or judgment and highlights that all Autistic adults have a right to accommodations, supports, equitable access to society, and a high quality of life. This does not mean that autism is not a disability—Autistic self-advocates commonly identify autism as a disability; this mindshift merely changes the way we view the needs of Autistic people from a medical model (where the individual is flawed and must be fixed) to a social one [where the setup of the environment determines whether a person struggles or succeeds."
"It is in this spirit that we encourage you to think about the potential for a neurodiversity mindshift. What happens when the goal is not normalization or even inclusion but celebration of Autistic bodyminds? What happens when our worldview inherently values neurodivergence? What happens when we have dismantled ableist systems of oppression to the point where Autistic people are no longer discriminated against at all?"
“Understanding that Autistic adults are a marginalized group of people that experiences discrimination and harmful outcomes drives us to shift our frame of mind from one based on a deficit model to one focused on centering the voices of Autistic people and providing appropriate supports and accommodations to help them thrive.”
This is another article about older autistic people https://www.independent.ie/irish-news/health/hospital-consultant-tells-of-life-changing-relief-at-being-diagnosed-with-autism-in-adulthood-42373942.html
It talks about our much shorter life expectancies among other things.
“Leading causes of death were heart disease, suicide, cancer, and epilepsy."
"Suicide rates overall are 7 times the general population rate, and up to 13 times for autistic women without intellectual disability. “
"She added that while shocking, even more surprising is the fact that mortality from cancer is doubled."
Besides difficulty using the telephone "Over half reported avoiding or delaying a needed appointment because they did not feel understood by medical practitioners.“
“Most worryingly, one third reported an inability to access care for potentially serious or life-threatening conditions.
“It is not difficult to see how this might contribute to excess mortality for autistic people. “
“Research shows the prevalence of autism is stable across the lifespan, but where are our elderly autistic people? How many are struggling in residential care not adapted to their needs?"
“Research shows that up to one in 10 inpatients in mental health settings are likely to be autistic, and one in five attending outpatient mental health clinics. Yet we are only at the stage of piloting an adult autism assessment pathway in our public health system. “
"She pointed out that education and training is the primary need, and appropriate education on autism must be embedded into the curriculum at undergraduate and post graduate levels for all medical professionals as well as allied professions."