OARacle Newsletter

“Mom, I’m autistic.”

It was 1992. My eight-year-old first-born child, assigned female at birth, was holding a magazine article about an autistic girl. As a special education teacher, I knew a little about autism, but only a little.

What was I supposed to say?

I might have asked, “Why do you think you’re autistic?” and then listened.

I might have said, “Let’s look at that article together and talk about it.”

Either one of these responses would have opened up a dialogue, and I might have learned something. Sadly, I did not go that route.

What I actually said was, “Oh, honey, you’re not autistic! You’re just smart, so the other kids don’t understand your interests. But you can’t be autistic, there’s nothing wrong with you!”

I still cringe when I remember that all-too-brief conversation.

It would be over a decade before I learned how wrong I had been. Back then, we’d never heard of “late-diagnosed autism.” When we heard “autism,” we pictured nonspeaking little boys who flapped their hands and loved toy trains.

Maya Angelou wrote, “Do the best you can until you know better. Then, when you know better, do better.” Now, I know better. I understand that when I said, “There’s nothing wrong with you,” what I was saying was that there is something wrong with being autistic.

And that’s just not true.

Masked, Missed, and Misunderstood

It still hurts my heart when I meet autistic women who have been treated the way I treated my own child so many years ago. When they finally open up to their family, friends, doctors, or therapists, they are met with disbelief, disdain, dismissal, and even laughter at their expense. They have masked so well, their autism is missed and misunderstood.

So, What Should We Say?

First, before anything else, pause. This was not easy for her to disclose to you, and she deserves a thoughtful response. Thank her for her trust. Listen and show that you care without judging. Then, your response depends on who you are. What is your relationship to the woman who found the courage to tell you, “I think I’m autistic”?

Friends and Family

If you’re the parent, partner, or friend of a woman who says, “I’m autistic,” your job is to believe her, love her, and support her.

Don’t say:

• “You don’t look autistic!” What is autism supposed to look like?
• “There’s nothing wrong with you!” There’s nothing wrong with autism.
• “We’re all a little bit autistic, aren’t we?” Being shy or sensitive is not the same as being autistic, and this minimizes the very real challenges that autistic women face.

Do:

• Invite her to tell you about her autism and what it means to her, if she wants to.
• Listen without judgment when she shares her lived experience.
• Ask her what she needs, rather than offering the kind of help you think she needs.
• Thank her again for trusting you enough to disclose this about herself. She may have been masking her whole life, trying to act “normal,” and it’s been exhausting. If you see a new side of her, don’t assume she’s “putting on” stims or suddenly “acting” autistic. She may finally feel able to unmask around you. Be worthy of that trust.

Professionals

If your patient or client tells you she thinks she’s autistic, don’t rush to judgment.

Don’t:

• Refuse to test her because you “don’t see autism.” She may be masking her autistic characteristics out of long habit or anxiety.
• Let the fact that she has a relationship or a job convince you that she can’t be autistic. Autistic people get married and have friends, families, and jobs.
• Use eye contact as a reason to deny her autism. Did you ask how eye contact feels to her or if she taught herself to look at people’s eyes because it didn’t come naturally? People in the neuro-majority aren’t taught to make eye contact and never even think about it. Does your client have a plan for looking at a person’s eyebrows to give the appearance of eye contact, or does she silently count seconds for a routine of looking at the eyes, looking away, and then back again?

Do:

• Ask follow-up questions about why she believes she’s autistic. Be a detective, dig deeper, and give her the respect of taking her seriously. Sometimes we ask, “Do you have problems with social conversations?” The short answer might be “No.” It might not be a problem because she avoids social conversations, or because she taught herself a system for “performing social conversation.” People in the neuro-majority don’t tend to have systems for conversing, we just wing it.
• Refer her for assessment if you are unable to evaluate her for autism. Just because you don’t see it doesn’t mean it’s not there. Refer her to someone who is experienced in diagnosing masked, late-diagnosed autistic women.

If You Are an Autistic Woman

If you have discovered that you’re autistic, I invite you to love your autistic self. You’ll find other late-diagnosed autistic women who have a lot in common with you once you start looking.

Don’t:

• Let self-doubt or imposter syndrome keep you from connecting with people who will believe and accept you. Many have walked this same path of self-discovery.
• Assume that if you can’t afford an assessment or you can’t find anyone experienced in testing women, that you can’t call yourself autistic. You know yourself better than anyone else. Own self-diagnosis with pride.
• Be stopped by a professional who doesn’t hear you, tries to dismiss you, or gives you another label that doesn’t feel right for you. Being autistic is not being broken, flawed, or disordered. It is a brain difference, not a deficit.

Do:

• Read, research, and learn all you can about autism. Not all autistic people are alike, any more than any group of people is, but you will probably notice many similarities.
• Find people who find your differences delightful and places where you can drop your mask and stim if you want. You deserve to live your life as your true self, not your mask.
• Remember that you are worthy, your contributions are valuable, and the world is a better place because you are in it.

Today…

As I write this, my first-born is in the next room. It’s been 30 years since I heard the words, “Mom, I’m autistic.” We’ve come a long way. Although it was hard at first to accept the diagnosis, today we wouldn’t change a thing.

My hope is that when a woman in your life finds the courage to say, “I’m autistic,” you’ll be better prepared. She’ll thank you for it.

And if you’re the one who’s autistic, congratulations! You’re in good company.

Wendela Whitcomb Marsh, MA, RSD (religious studies doctorate) (she/her) is an award-winning author, sought-after speaker, and autism expert specializing in late-diagnosed autism. She is the founder and CEO of Adult Autism Assessment & Services, a neurodiversity-affirming group practice hiring autistic clinicians. Her books include Recognizing Autism in Women and Girls, and the book series, Adulting While Autistic. Her late husband and two of their three children were diagnosed as autistic later in life