Discovering Autism & Community Later in Life

Brenda Dater, MSW, MPH

Brenda Dater, MSW, MPH

About the Author

Brenda Dater, MSW, MPH, is the executive director at AANE and the author of Parenting Without Panic. Brenda is a mom of three, and her eldest is an Autistic transgender woman. Brenda has facilitated parent support groups for over 20 years and thoroughly enjoys creating an environment where parents can find the support, information, and the community they need.

Many older adults in AANE’s community were children in the 1950s, 60s and 70s when the diagnosis of autism as we understand it today didn’t exist. Some were misdiagnosed with conditions like childhood schizophrenia, but many were just harmfully labeled as odd or having behavior problems. Because of the lack of awareness and understanding about autism, many have come to their diagnosis, or self-understanding, in their fifties, sixties, seventies and beyond, often after many years of being misunderstood or not fitting in at school, work, or socially. The stories they tell about feeling relief to have an explanation for their experience and finally…finally feeling like they belong warms my heart.

I’d like to share one example of the hundreds of stories I hear from older adults. A 72 year-old who had recently learned she was Autistic contacted me. She shared how she was re-evaluating her whole life through the lens of autism. Now, her social struggles when trying to make and keep friends made sense. She told me that she used to immediately share intimate personal information and expect the same from potential friends. She’d always felt like something was wrong with her. But the recent diagnosis helped her see that the deep connection she wanted right away wasn’t wrong. She finally felt like she could talk about this in her AANE group, and the other Autistic members understood what she had been going through.

As a parent, I’ve learned an incredible amount from older Autistic adults. My 26 year-old Autistic daughter, Rachel, was diagnosed at three years-old. When I talk with older Autistic adults, they tell me how they wish that their parents could have known about their autism when they were young. It would’ve meant that they could have been better understood and might have gotten the help they needed in school. Instead, they said that their parents often found their behavior confusing and that teachers often remarked that they weren’t trying hard enough.

I am thankful that Rachel has had access to therapy she has found helpful. Still, she often comes to me expressing her wish for more social connections. Many of the friends she has had through the years are working or in relationships and have less time for her. Her social anxiety can keep her from meeting new people. Rachel encourages me to share her stories with our community to help others who experience the same thing. Although I can’t make friends for her, I want to help her learn how to broaden her social circle as an adult – no easy task when you aren’t meeting people through work or school.

When I meet and get to know many older Autistic adults, I feel a huge sense of hope and relief. They share stories similar to Rachel’s of being misunderstood by peers, feeling confused about who their real friends were, or multiple starts and stops with work. But I also see their deep connection that they found with each other – whether through our Artist Collaborative, over 50 groups, or ongoing support and interest groups – so many Autistic adults over 50 are finding their people and feeling a sense of connection and community.

And yet, the struggles many older Autistic adults go through cut deep. Many have not received the supports or services in school that could have helped them manage the day. Years of not understanding why you were different from others can create negative narratives that become ingrained. Many adults tell me they felt like a failure most of their lives, and the long-term effects are difficult to reverse. They also share that the wrongs others have committed against them feel fresh even if they occurred over 30 years ago. That is a heavy burden to carry. And I hope older Autistic adults can find some peace of mind and relief as they find others who understand their past experiences and offer validation and empathy.

Finding a community of people that take you in for who you are, right now, is life-changing. Many older adults discover that for the first time in their lives after they realize they are Autistic. If you are searching for that type of community or connection, please reach out to AANE. You are not alone.

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