Autistic People Want Work as Caregivers, But Face Systemic Hurdles

Many autistic people enter the developmental services professions as personal care attendants and educational assistants for developmentally disabled people. They bring unique skills such as flexibility, patience, empathy and creativity. But these very characteristics—which are valued by their clients—may be devalued by managers who prefer a one-size-fits-all, ABA-based model of “care.” Too often, these autistic workers either burn out or are forced out because they don’t comply to that ABA model. This is a loss for the clients, who lose an autistic mentor—and for the autistic support worker, who can be both traumatized and unemployed.

I spoke with several autistic support workers in schools, day programs, and group homes, as well as a manager of a support organization. Each talked about their experiences and the need to encourage schools and residential settings to be open to autistics’ ideas and energy. They believe there needs to be a shift, away from the ABA model—where residents/students are supposed to be compliant and quietly go along with what the authorities want—towards an autonomy-based model, where residents/students get to make their own choices, having autonomy.

The Autistic Advantage

Keenan Wellar, who runs LiveWorkPlay, an organization that provides direct supports and services to developmentally disabled people in Canada, told me that the organization has autistic staff and sees the value of it. Within the LiveWorkPlay model, clients have apartments of their own, real work for real pay, and are socially integrated. By including autistic staff, LiveWorkPlay is stronger, because an autistic staffer might see problems and solutions differently (and more similarly to the clients) than non-autistic staffers.

Keenan, who notes that LiveWorkPlay pairs workers and clients based on compatibility and connection, told me, “The fact that autistic persons are a significant population of the people we serve means that having the perspective of one or more autistic staff persons is especially meaningful.”

Like the LiveWorkPlay model, several autistic support workers I connected with focus on autonomy and co-regulation to meet the needs of clients. Gerard, who has worked as a paraprofessional in the US as well as teaching de-escalation, described how being autistic has been helpful for the job:

“I wanted to find neuro-affirmative ways of reducing the likelihood of crisis behavior. Much of it…has come pretty naturally. Once you start looking for logical contributing factors to stress levels preceding a violent meltdown it becomes pretty easy. I’ve met many clients who exhibit behavior or express thoughts similar to what I’ve felt/done in the past.”

Unfortunately, organizations that focus on neuro-affirmative approaches are still the exception, not the norm. Keenan points out his organization remains among just a few dozen across Canada that are truly delivering “individualized supports with community-based outcomes.” Many autistic support workers are still working in settings that use ABA, an approach that focuses on normalization and conformity, not autonomy.

Pressured By Behaviourist Managers

In a previous job as a support worker, Gerard says, some managers wrongly believed clients’ meltdowns and shutdowns were done on purpose, just to upset staff. Gerard’s respectful approach to clients in crisis was even seen by his superiors as “indulgence.” This experience reflects a common complaint from people I talked to: That some developmental services managers prefer an atmosphere of total control, even when this control has traumatic results for clients.

In an interview on my podcast, Raya, who worked as an educational assistant, described to me the ways that a school had failed to meet the basic needs of a student.

“I was working with a grade three student, super-cool kid,” she told me. “Lots of potential, utterly failed by the school system. There was no attempt to modify the classroom or the school environment in a way that would make learning and socializing accessible to him. When there were difficulties either he was seen as a problem, or I was cast as not being strict enough. There was so much pressure to implement reward charts and token economies which I’m philosophically opposed to in every way,” she added.

Autistic disability advocate Cal Montgomery told me the unique needs of autistics in group care settings are often not even addressed. Describing group homes as “still largely institutional and based on a mindset that these are people need to be controlled,” Cal observed that the concept of freedom too often seems threatening to non-autistic people in charge, who sometimes discourage them even from talking about their special interests with others.

“This fear that if we don’t rope people in tightly, it’s going to be a problem. But roping people in is harmful. Not giving people a chance to meet people and give them a chance to talk about what they’re interested in is harmful. And yeah, sometimes you don’t want to talk to somebody about whatever they’re interested in. But sometimes you find somebody who does want to talk about it, or is happy about it because they’re interested in you.”

Autistic support workers’ ability to think outside the ABA box is helpful to clients, but is too often discouraged or even penalized when they try to make change. Raya described to me that she herself was called to the principal’s office when she advocated for simple classroom accommodations for the student, as if she were making trouble rather than trying to solve a problem. After she burned out and left her position, the student and his family were left without neuro-affirmative options for a classroom aide.

Enthusiasm, Greeted With Ableism

It isn’t just developmental services clients who lose out when freedom and autonomy are stifled; it also negatively affects the support workers themselves. Janice, who is autistic and has worked in the developmental services sector, believes it is important for employers to hire autistics “because of the knowledge and connection they can bring to this work.” She told me about her desire to help the community and work in what she hoped would be a disability-friendly environment:

“I thought it would allow me to have supervisors and managers that were understanding and accommodating,” she said. “I loved working with disabled individuals [and] to be able to see progress using methods that were less behavioral-oriented and connection-focused kept me in the field, despite its many issues.”

Unfortunately, Janice faced barriers to her style of compassion and encouraging autonomy because the organization she worked at used ABA-style methods. “The right kind of support for the clients and staff was not there,” she told me, “In the past I have burned out quickly. The deficit-based attitudes of many places also means [you’re] fighting ableism, which becomes very exhausting and dehumanizing quickly.”

Janice believes that pressures from the ABA-based leadership has prevented other colleagues from honoring self-determination in clients. She would like to see all policies requiring ABA certification to be removed.

After a decade, Gerard recently quit direct support work. He had developed two ulcers during his work in an ABA-driven program. At one job, a supervisor called his non-punitive based approach “toxic” and he was fired, in his words “for not lowering my [ethical] standards to meet their convenience”. He is currently in a job where he helps families sign up for Medicaid waiver support services—a win for his employers at Medicaid, but a loss for his former developmental services clients.

We Need Change Now

Autistic support workers who connect with clients can be the rare gift that many parents long for. Yet, too often, the systems that hire and fire them have rejected new approaches—then they burn out, and families lose out on good support.

“I don’t know how to fix this,” Gerard said, “and I don’t know if there’s any motivation to see the problems for what they are.”

All of this relates to the famous Burrito Test. Using the burrito test, you can often determine whether someone has choices and autonomy by asking: “Can they make themself a burrito in the microwave at 3 AM—or is the fridge locked and they have to ask permission to do something most others take for granted?” The neurodiversity movement has made a clear stand—burritos at 3 AM for anyone who wants them! But until developmental services catches up, autistic support workers will have to keep advocating, while also trying to take care of their own emotional health in the workplace.

A monkey parent cuddles a monkey baby while a forest burns in the background.
Image by Ria Sopala from Pixabay