Dora Raymaker knows from personal experience how hard it is to be autistic in the skilled labor market, and she wants to make it better.
Raymaker, an autistic researcher at Portland State University, says she was surprised and excited to recently receive not one but two federal grants for a proposal to study the needs, barriers and successes of autistic people in professional employment.
The project earned a $417,285 grant from the National Institutes of Mental Health and a $50,000 grant from a PSU program aimed at increasing diversity in science.
"Improving workplace diversity is a win-win for everyone," Raymaker says. She argues that employers could be missing out on skilled and specialized talent by not accommodating autistic people.
It also could be a growing societal need.
The number of children diagnosed with autism spectrum disorder has risen dramatically in recent years. According to the Centers for Disease Control, in 2000, about 1 in 150 children were diagnosed as being on the spectrum. These days, it's more like one in 68.
Zoe Gross, director of operations at the Autism Self-Advocacy Network, says she thinks more people are being diagnosed with autism rather than misdiagnosed with something else, like intellectual disability.
"There are probably not more autistic people than there were before," she says.
Gross says having more people with autism in the work force is not a bad thing — much worse would be keeping them out of the work force.
"It's very difficult for people to meet their life goals in many cases if they are not employed," she says, listing dependency, depression and isolation among the ill effects. "Our society is really shaped around the assumption that people work."
Autism Self-Advocacy Network is a community partner in the research project and Gross has helped shape the scope as an adviser. She says there needs to be more research like this, which she says is part of a tiny body of work to improve outcomes for autistic people rather than trying to eliminate their autism.
"(Autistic people) won't be helped by making mice act autistic, but they could be helped by the findings of this research," she says.
Gross is on an advisory committee for the Academic Autism Spectrum Partnership in Research and Education, the research collaborative that will do the work.
In 2006, Raymaker and Christina Nicolaidis — a social work professor at PSU —a physician at Oregon Health & Science University and the parent of an autistic child — joined forces to form the partnership. It has a core goal of working with the community to make sure they are investigating issues that are meaningful to them.
The pair started the partnership, Raymaker says, because they were so angry at how autistic people were held at arm's length. "Substitute 'autism' for 'race,' and you ended up with the same issues in research."
Interviews hard, even if job isn't
Raymaker says a lot of autistic people are unemployed or underemployed and research has been focused getting them into low-skill jobs.
"There are people with a master's degree in psychology who are working as a stock person in a back room," she says. "There hasn't been a whole lot of focus on getting people into careers instead of into jobs."
The team's research hopes to look more into why this is and what can be done about it. But Raymaker already has a few guesses based on anecdotes and personal experience.
A big problem is that American employment practices still rely heavily on interview skills. Autism can make it difficult to make eye contact or present well in those situations, even when a person can perform actual job functions well, she says.
"We might not look or act in a typical way but we might be very competent," Raymaker says.
Since autistic people's brains are different, they can have skill gaps that don't quite match a job description. For example, she has a job that requires maintaining a budget, but her brain finds arithmetic very challenging. So, Raymaker arranges her job to give that particular task to an assistant.
It can require creative thinking and conversations with an employee to figure out how to accommodate them.
"If you've met one autistic person, you met one autistic person," Raymaker says, explaining that different people will require different accommodations. "Sometimes, they just need someone not to assume that they can't do something."
The first year of the grant project will entail interviewing 85 employees, employers, job-seekers and employment system specialists. Researchers are especially looking forward to hearing success stories.
"We are interested particularly in what has made that success," Raymaker says.
During the second year of the grant project, the team will try to come up with effective and workable solutions, and then run those past the targeted population.
"I am a very strong believer in the value of diversity," Raymaker says. "When you have different kinds of minds being applied to tasks — particularly, creative tasks and high-end tasks — you're going to get different solutions."
The project currently is recruiting autistic skilled workers, autistic job-seekers and employers willing to take part in the study. Learn more at http://aaspire.org/employment.
The debate over person-first language still rages in the disabled community ... or should we say community of people with disabilities?
A disability can mean lots of different ways of life and may or may not be considered an impairment by the person experiencing it. Generally, those who consider their disability to be a core function of their identity still prefer adjective modifiers. Blind, deaf and autistic people tend to want to be referred to that way. People with other disabilities, such as genetic or developmental disorders, tend to prefer speakers to assert their personhood before adding that they have a disability. Others feel that makes for awkward sentence structures and calls more attention to the disability or makes it feel "less than."
Still other people accept descriptive nouns, such as dwarves.
It's best to ask how a person likes to be referred to.