Recognizing and Empowering Autistic Adults

Autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by differences in communication, social interaction, sensory processing, and patterns of thinking and behavior (American Psychiatric Association, 2022). The word “spectrum” highlights the diversity of presentations in that each individual’s experience of autism is unique. This aligns with the words of Dr. Stephen Shore, a clinical associate professor and autism advocate, who stated, "If you've met one person with autism, you've met one person with autism."

While the characteristics, symptomatology, and severity of autism is wide ranging– it is often the case that when a person thinks of autism, the face of a child comes to mind. To date, the predominance of services, research, and funding is devoted to younger populations with autism. However, what is known about adults with autism?

Although autism begins in childhood and presents during the developmental years, it continues throughout the lifespan. In adulthood, those with autism (often alongside their families and loved ones) continue to navigate the demands of everyday life, challenges, and barriers across the lifespan. This is often done in the context of a fragmented and often inaccessible service network (Ishler et al., 2023; Marsack-Topolewski & Weisz, 2020). At times, some adults (e.g., women, those from marginalized communities) remain undiagnosed or misdiagnosed (Friedman et al., 2024; Isaac et al., 2022; Lupindo et al., 2023).

Recent numbers from the Centers for Disease Control and Prevention (2025) estimated that 1 in 31 children are diagnosed with ASD in the United States. In adults, approximately 2.22% of the population or roughly 1 in 45 adults are estimated to be on the spectrum (Dietz et al., 2020). Despite both advances in knowledge and services, both research and services for autistic adults lag significantly behind those devoted to or focused on children and adolescents (Mason et al., 2022). To further complicate matters, for individuals who receive a formal diagnosis or come to recognize their own autistic characteristics in adulthood, the service landscape is often limited and difficult to navigate (Huang et al., 2024).

While autism impacts multiple domains (e.g., work, relationships, health, parenting, finances) of life, it is important to recognize that for many– their neurodivergence presents unique realities and strengths. Universal support, environment, as well as awareness and acceptance can be influential in enabling strengths to present and be fostered in various settings. In communities, networks, and systems that understand neurodiversity and provide support that are neuro-affirming– this can often take root. For adults with autism, the following areas are often impacted by their unique characteristics that result from ASD:

• Education,
• Employment,
• Social relationships (e.g., friendships, romantic relationships, relationships with family members),
• Parenting responsibilities, and
• Daily living skills (e.g., managing finances, meal preparation) and independence.

For practitioners supporting adults with autism, offering an accessible, sensory friendly environment is key. This often varies from person to person, but may include the following:

• Minimizing bright lights, reducing background noise, and supporting a fragrance free environment (to the extent possible). It may also include modeling and providing different opportunities for communication by allowing written language and using visual supports.
• Supporting a neuro-affirming setting and community.
• Offering opportunities to be client-centered by asking about an individual’s sensory preferences, social needs, and communication styles and needs.
• Recognize that each person is more than their autism. While this may impact adults with autism daily, being cognizant of other realities and identities is critical to understanding a person’s experience.

Each of these may be helpful in fostering respect, creating comfort, and reducing anxiety.

As awareness and diagnosis of autism continue to expand, we will see more autistic adults in our work as social workers, psychologists, counselors, and other health professionals. This will also extend to other settings (e.g., offices, classrooms, grocery stores, places of worship, other community settings). In many ways, this calls for a societal shift for more awareness centering on adults with autism and the deepening of neuro-affirming supports and practices in all sectors of life. There continues to be a deep need to build services centered on autistic adults as they age across the lifespan and provide service navigation support designed for the autism community and their loved ones. Of critical importance, our services, supports, and approaches should focus on centering the voices of the autistic communities and families– ensuring their lived experiences, priorities, and goals directly shape the policies, programs, and policies intended to serve them.

A note about language and phraseology: Differences exist as it pertains to language preferences within the autism community. Some individuals prefer identity-first language (e.g., autistic person), emphasizing that autism is a central part of who they are. Others prefer person-first language (e.g., person with autism), recognizing autism as one aspect of their identity. Providers and loved ones can be supportive through using the language preferred by each individual. This can communicate a level of respect, build trust, and demonstrate a commitment to person-centered care. Given the variance in preferences, I have used the terms interchangeably in this blog.

Register for Dr. Christina Marsack-Topolewski's upcoming live event "Autism Spectrum Disorders, Co-Occurring Conditions, and Substance Misuse" HERE.

Reference List

American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). American Psychiatric Association. https://doi.org/10.1176/appi.books.9780890425787

Centers for Disease Control and Prevention. (2025, May 27). Data and statistics on autism spectrum disorder. https://www.cdc.gov/autism/data-research/index.html

Dietz, P. M., Rose, C. E., McArthur, D., & Maenner, M. (2020). National and state estimates of adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 50(12), 4258-4266. https://doi.org/10.1007/s10803-020-04494-4

Friedman, A., Paltoglou, A., & Sorte, R. (2024). A qualitative exploration of the experiences of self-diagnosed autistic women and gender-diverse individuals who are not pursuing an autism diagnosis. Neurodiversity, 2, 1-13. https://doi.org/10.1177/27546330241307828

Huang, Y., Arnold, S. R., Foley, K. R., & Trollor, J. N. (2024). Experiences of support following autism diagnosis in adulthood. Journal of Autism and Developmental Disorders, 54(2), 518-531. https://doi.org/10.1007/s10803-022-05811-9

Isaac, J., Jeremias, D., Almeida, C. R., & Albuquerque, R. (2022). Beyond what clinicians see: missed diagnosis and misdiagnosis of a woman with autism spectrum disorder. BMJ Case Reports CP, 15(4), e246320. https://doi.org/10.1136/bcr-2021-246320

Ishler, K. J., Berg, K. A., Olgac, T., Obeid, R., & Biegel, D. E. (2023). Barriers to service and unmet need among autistic adolescents and young adults. Autism, 27(7), 1997-2010. https://doi.org/10.1177/13623613221150569

Lupindo, B. M., Maw, A., & Shabalala, N. (2023). Late diagnosis of autism: Exploring experiences of males diagnosed with autism in adulthood. Current Psychology, 42(28), 24181-24197. https://doi.org/10.1002/aur.3278

Marsack-Topolewski, C. N., & Weisz, A. N. (2020). Parents’ perceptions of access to services for their adult children diagnosed with autism spectrum disorder. Families in Society, 101(2), 190-204. https://doi.org/10.1177/1044389419881273

Mason, D., Stewart, G. R., Capp, S. J., & Happé, F. (2022). Older age autism research: A rapidly growing field, but still a long way to go. Autism in Adulthood, 4(2), 164-172. https://doi.org/10.1089/aut.2021.0041

Resource List

1. Autism Research Institute - Website: https://autism.org/
2. Autism Society - Website: https://autismsociety.org/
3. Autism Speaks (Resources for Autistic Adults) - Website: https://www.autismspeaks.org/resources-autistic-adults
4. Autistic Self Advocacy Network - Website: https://autisticadvocacy.org/
5. Centers for Disease Control and Prevention (“Autism Spectrum Disorder in Teenagers and Adults”) - Website: https://www.cdc.gov/autism/about/asd-in-teenagers-adults.html
6. Organization for Autism Research - Website: https://researchautism.org/families/
7. The Arc of the United States - Website: https://thearc.org