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.
One of my most challenging moments as a parent was the day my Autistic daughter told me she was sorry she was such a burden to our family. I held her as I told her that I was so grateful to be her mom and have her in my life. I wanted to offer reassurance to my daughter so that she understood and believed that no one in our family thought of her as a burden. Rachel, who asked me to share her story, had been dealing with major health issues. She had relied on us heavily to help her navigate numerous medical appointments, manage medication, and deal with insurance, which at times was overwhelming for all of us.
Even though this was the toughest thing we’d been through as a family, we didn’t see Rachel as a burden and we wanted to make sure she didn’t see herself as a burden either. We repeatedly told her that this ordeal was not her fault and that she would get through this. We loved her unconditionally and were amazed by her ability to advocate for herself, find joy when talking about her interests, and join game nights as a distraction from her daily worries about her future.
When Rachel and I were able to talk through why she saw herself as a burden, she shared the long history of feeling like she couldn’t live up to her own and others’ expectations. She often felt like a failure trying to be like a neurotypical person – not able to sustain the social and communication norms that non-Autistic people seem to manage easily. She reminded me of all the times she’d been penalized for showing her Autistic self. One example was the time she was on a class trip in Europe and had a moment where she couldn’t regulate her emotions with her group. She was ostracized after that incident and no other student would include her when they split into small groups. Through these types of experiences, Rachel learned that showing her Autistic traits might not end well. So she, like many other Autistic individuals, tried to hide parts of her true nature to avoid negative consequences.
But the roots of her feelings extend further back. Rachel talked with me about how attending social skills groups as a child and teen actually led to feeling more socially anxious. She said that she felt like she was always being told what she was doing wrong. Among other things, she was constantly informed she was “too loud,” she “interrupted,” she “didn’t ask other kids questions about themselves,” and she was “too blunt.”
That was the start of her masking – the conscious or unconscious effort to hide Autistic traits in order to align with the social norms of the majority culture. Rachel learned early and often that her style of communication needed to be changed in order to blend in and not make others uncomfortable. And she continued to receive these messages throughout high school and college: tamping down her excitement so as not to overtake conversations or sitting still during class instead of pacing at the back of the room so she wouldn’t disturb other students. These and countless other examples made her feel like she needed to hide her true self because it wasn’t acceptable to be authentically Autistic in these places.
One of the most harmful aspects of masking that I see is the damage it does to a person’s sense of self. Being told over and over again that you need to be different in order to be accepted is detrimental to developing a healthy and positive understanding of oneself. All of us, regardless of our neurotype, can have goals and want to improve in different aspects of our lives. And there are times where any of us can need to repair situations where we’ve unintentionally hurt others. But there is a difference between having goals for yourself based on your strengths, challenges and interests and feeling the need to inhibit core aspects of yourself to fit in and be accepted.
At the time Rachel attended social skills group as a child, we thought Autistic children simply needed to be explicitly taught the social conventions that neurotypical kids learned intuitively. But we often failed to affirm and celebrate Autistic individuals for who they were. We also didn’t teach neurotypical kids the value of differences and how important it is to accept and include other ways of communicating and being. Programs that provide social support for Autistic children should help them develop self-understanding and confidence rather than making them feel like they have to transform into someone they are not.
I don’t want Rachel or any Autistic person to feel like they are a burden or need to mask in order to feel accepted. Rachel deserves to be appreciated and cared for without having to pretend to be someone she isn’t. One of the greatest gifts any of us can receive is to experience validation and belonging for who we are. In the last couple of years, I’ve seen a shift in Rachel’s sense of self. She has found more people and places where she can be her authentic, Autistic self. She has found activities she enjoys with people who enjoy her. She is genuinely interested in being part of these communities and feels energized and happy to participate. What a difference it makes to set down the mask she has carried for so many years. It’s crucial that there are places and people with whom Rachel and other Autistic individuals can be their true selves and find others who accept and appreciate them just as they are.
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