Perspective

“Not until we are lost, do we begin to understand ourselves” – Henry David Thoreau

When I moved to my first college to major in pre-veterinary studies, I had lots of hopes for the future. Less than one semester later, I was at rock bottom, in the middle of a thyroid- and trauma-induced major depressive episode. After three days in the intensive care unit, of which I recall nothing, I was moved to an inpatient psychiatric unit for 10 days. If rock bottom was where I was previously, then this was hell. Alone, heavily medicated, and asked to participate in group sessions where other people either joined or left the group daily, I felt very scared. I was finally discharged back home. After months of treatment and support, I returned to a different college, and this time majored in psychology, mainly because I needed to understand the complexities of how our physical and mental health interacted.

Now, as a Ph.D.-trained health services researcher and an occupational therapist, I continue to carry those experiences with me in everything I do. Even though my experiences have never been a part of my public professional story, this past year has highlighted the importance of being true to the things that shape us. I believe that acknowledging how our mental health shapes our ability to respond and engage authentically in both our professional public-facing and our personal lives is critical to authentic relationships in research and practice.

In the stakeholder-engaged work that I do in collaboration with Dr. Stephen Shore and the Community Council for Autistic Adults and other Stakeholders Engage Together (AASET) project, we asked about priorities that people had for research and practice. We found that mental health was one of three top priority areas that the autistic community felt was in need of greater attention (the other two were access to care and gender and sexual health). Within the mental health priority area, we identified five specific research and practice priorities for mental health:

• Understanding and addressing trauma throughout the lifespan
• Reducing the impact of stigma, discrimination, and marginalization of autistic people
• Evaluating the effect of self-managed and community-available approaches that people can more easily access on their own
• Thoroughly assessing adverse outcomes or side effects of currently used interventions and approaches
• Promoting the development of better outcome measures of autistic quality of life, well-being, sleep, and other outcomes

These are similar to and align with other priority-setting research activities. Autistica in the UK also found that mental health was its top research priority, and Dr. Sarah Cassidy recently shared Autistica’s research priorities for suicide research in autism. Clearly, mental health is a topic that we need to address from a research and practice perspective in autism. However, I’m often asked, “What can we do NOW? We can’t wait for research to catch up.”

I believe that fundamentally we all need to feel a sense of belonging and worth, and we feel most healthy when engaged in “human occupations”—those mundane and important things that fill our time. How can providers, parents, caregivers, and autistic people build a life filled with meaning and joy?

Here are my perspectives, based both in my research, practice, and personal expertise:

• For providers and professionals working with autistic people: Recognize your role as a mental health provider—whether you have specific training or not, your interactions and beliefs can either create a positive sense of self-worth or can tear down a person’s identity and leave them feeling less than. Collaborate on goals. Focus on strengths. Build up someone’s perspective of what they can achieve.

• For parents and caregivers of autistic children, youth, or adults: You matter. Your advocacy matters. Promote your family member’s self-determined ability to make choices, even if you disagree with their decisions. Autistic children and youth are often not given the opportunity to make their own decisions, and this limits a person’s feelings of autonomy and self-worth. A parent of an autistic young man once said to me, “I think my child spends too much time playing video games online. He needs to go out more.” I replied: “Your child has an online community with a shared interest and focus. If the interest and focus is not leading to self-harm or harm of others, why do you wish to change that?”

• For autistic people managing their own mental health, learn about yourself. What helps you feel grounded and centered? Where do you feel most at peace? What things do you enjoy doing to the point where you lose track of time? Build opportunities to engage in those meaningful things. In what ways can you share your gifts with the world? Do you seek out help when you need it, and do you give help to others? What mental-health wins can you recognize in your own life experiences, and can you frame them as a positive thing learned? Someone once said that mental health is not a destination, it is a journey.

Here’s what I’ve found about myself: I get overwhelmed easily, but have learned to ask for help or forgiveness when I drop the ball or miss a deadline. I need to start my day in a quiet place with a book and cup of coffee, preferably outside so I can hear the birds and wind. I can’t do social media because my anxiety is too great. I sometimes need medication, and I rely on my husband to help me know when I might need more help. I am no longer ashamed that I need these things or that I am the way I am. I’ve also learned that helping others makes me feel a part of something bigger and hopeful for the future. I am grateful for working with autistic colleagues to define and address mental health, in collaboration with other like-minded researchers, caregivers, and clinicians. Our collective journey to address these mental health needs will rely on our shared vision and collaboration to learn and grow. These are my mental health wins…what are yours?

Teal Benevides, PhD, MS, OTR/L is an occupational therapist, researcher, wife, and mother. She is an associate professor in the Department of Occupational Therapy at Augusta University, and maintains a joint appointment in the Institute of Public and Preventive Health. Dr. Benevides, who is a member of OAR’s Scientific Council, is committed to fostering access to services and supports for individuals on the autism spectrum, and working to achieve better health outcomes and participation in meaningful life activities in alignment with priorities identified by autistic people. She aims to address the most pressing medical and mental health priorities faced by the autism community in collaboration with autistic partners.