What Caregivers Need to Know About Working with Someone with Autism
You’re a skillful, compassionate caregiver. Maybe you have experience with children or seniors, paraplegics, or other populations. You spot an ad from a family seeking a caregiver for an individual with autism. You have never worked with anyone on the spectrum before and you wonder, “Am I qualified?” The answer is a qualified “yes.”
Why Your Caregiving Skills Apply to Autism Support
Twenty years ago, Janet Barbieri, MSW, LICSW Deputy Director, Association for Autism and Neurodiversity (AANE) was a direct support professional without any such experience. Her takeaway?
“If folks are bringing certain competencies like humility, flexibility, curiosity, a willingness to learn, an approach that affirms how the individual goes about how they live their life, they want to empower their decision-making and autonomy, I think those are really good starting competencies.”
Barbieri believes that autism specific training, regardless of your level of experience, is critical if you’re working with individuals across the spectrum. That training doesn’t have to be a degree or even a certificate. There is a tremendous wealth of free resources online from reputable sources. AANE has a library with hundreds of articles written by professionals, self-advocates, and family members. They also offer free workshops, professional associations for ongoing training and consultation and a wealth of professional training opportunities.
But while she says that “autism-specific training, regardless of your level of experience, is critical,” Barbieri adds that humility, flexibility, curiosity, a willingness to learn, an approach that affirms how the individual goes about how they live their life, and a desire to empower decision-making and autonomy are “really good starting competencies.”
As an autism self-advocate who serves on boards, commissions, and committees of several autism and disability organizations, Gyasi Burks-Abbott has a unique perspective on caregiver qualifications. Burks-Abbott, who is on the faculty of the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Program at Boston Children’s Hospital and UMass Boston’s Institute for Community Inclusion, says simply, “If you are a seasoned caregiver, then you are qualified.”
LEND is an interdisciplinary program that provides treatment for children with disabilities and training for healthcare professionals. Burks-Abbott says, “Autism is a spectrum, but so is disability, and regardless of where people fall on either spectrum, many share similar support needs. Just be open to learning new things and listening to families. But don’t be too focused on the diagnosis.”
He recalls having been denied admittance to a therapy group because of his Autism Spectrum Disorder (ASD). The clinician who interviewed him thought he would be a good fit but their boss, whom he never met, took one look at his diagnosis and said “no way.”
During his last year of college 30 years ago, Burks-Abbott worked with clients he suspected would be categorized as profoundly autistic today. He saw his own autism reflected in their mannerisms but he also saw “what you might call some human universals. Even my clients’ most unusual behaviors were often responses to things that would elicit a reaction in anyone, whether they were autistic or not…So, when working with this population, consider being willing and able to look beneath the surface strangeness and recognize the underlying sameness.”
Are You a Good Fit as a Caregiver for an Individual with Autism? Ask Yourself These Questions:
- Am I willing to be supportive and reset the conversation when communication breaks down?
- Am I patient with repetitive behaviors?
- Can I stay calm around loud vocalizations or meltdowns?
- Am I comfortable assisting with hygiene or personal care, if necessary?
- Am I comfortable with ambiguity and slow progress?
- Will I be offended by blunt communication?
CONSIDER:
- Your tolerance for unpredictability and sensory stress
- Your communication style
- Whether you are better suited to verbal vs. minimally speaking individuals
- Your comfort level with behavioral dysregulation or aggression
- Your ability to interpret nontraditional communication
To learn more about free services provided by the Association for Autism and Neurodiversity (AANE), visit: https://aane.org/services-programs/grants-free-programs/free-services-and-programs/
Rewarding Work is the online directory connecting people with disabilities including individuals on the autism spectrum with qualified caregivers. To complete the free online application, visit: www.rewardingwork.org/job-seeker/how-it-works-job-seekers