To celebrate March's Developmental Disabilities Awareness Month, I conducted an interview with a few people on the Autism Spectrum.
Late-diagnosed women have often been overlooked because they have been able to "mask" their autism traits. In Hannah L. Belcher etal's article, "Shining a Light on a Hidden Population: Social Functioning and Mental Health in Women Reporting Autistic Traits But Lacking Diagnosis," is the following observation:
"First, Autism Spectrum Condition should not be ruled out during psychiatric assessments because of seemingly typical interpersonal skills and social functioning, and full developmental histories should be taken that consider the patient’s experiences of masking autistic traits. Second, women presenting multiple times to clinicians with psychiatric difficulties should routinely be screened for autism, particularly those presenting with symptoms of Bi-Polar Disorder."
Late-diagnosed women with Autism Spectrum Disorder (ASD) may outwardly behave or seem like neurotypical women. Internally, women with ASD are suffering internal struggles that are deeply detrimental to their mental health.
This time, I will share some of their observations about the meaning of friendship. In the future, I will share other observations that they have. It was truly enlightening to hear their stories.
Thank you to my anonymous interviewees, who allowed me to enter their world! To protect their identities, they remain safely A, B, and C.
Our Conversation...
Much of the characteristics that we associate with ASD have come from studies that center on male subjects. Do you think your childhoods reflect this incongruity?
A: "Yes, in particular, I think I was not diagnosed with ASD as a child because I never showed the outward behaviors that are typically associated with autism: stimming, perseverating, repetitive movements, etc. Instead, my ASD exhibited itself in my thoughts. I would perseverate in my head by repeating negative ideas about myself over and over or using repetitive remarks rather than movements. Now, I understand that I was masking, or covering up my autistic traits. Covering my autistic traits has been detrimental to my mental well-being. I do wish I had been able to receive ASD behavioral treatment when I was young, so that I wouldn't feel so much pain right now."
B: "I was only diagnosed with Attention Deficit Disorder during my childhood. This was at a time when only the most severe cases of ASD were treated."
C: "Yes, I remembered that while I was growing up, I attended mostly classes with boys. It was only when I mainstreamed that I realized that girls go to school, too."
Were you aware that you were masking? When did you realize that it was hurting you?
A: "When I learned I was on the Spectrum, it was a relief. A lot of what I thought was wrong about myself was, in fact, not wrong. I now realize that ASD is a gift.
I didn't know about masking in the beginning of my journey. I have only recently learned all about it. As a girl, I was taught at an early age to follow certain social rules, or you would be a misfit. Though I was still a misfit, I was rudely informed about my lack of social skills by other kids. I wasn't sure why I was so different! However, I needed to conform to a certain set of behaviors and I eventually recognized that ASD behaviors are not acceptable in most situations. As such, I learned how to hide or mask those behaviors that made me uniquely myself. I guess it was kind of like a form of self-hatred. I think that is why masking is so damaging to the psyche."
Do you recall any experiences that were particularly damaging?
A: "I recall that I had a "friend" I'll call Remelna. This person acted like she was my friend when we attended elementary school. We also attended church on Sundays together. Much to my surprise, this "friend" pretended that she didn't know me on Sundays, as she desperately tried to impress an older cousin. Because I have ASD, I didn't realize that Remelna was not a friend and that I should have tried to find other people who genuinely liked me.
However, I stuck to Remelna for the entire year, which continues to have effects to this day. I am sure Remelna doesn't realize that what she did was so damaging.
To this day, I have a strong mistrust of people because of this year-long incongruity of having someone behave like a friend for five days, only to reverse themselves on Sundays."
Did anyone else have this kind of experience, also?
C: "I had "friends" who would only call when they needed someone to drive them somewhere. Otherwise, they do not include me in any of their activities."
B: "Sorry to hear that, A. I also had a similar experience to C in high school. When I went on a school trip with my "friends," I became the sober buddy and had to take care of my "friends" when they over-indulged in drinking. I also never saw these "friends" unless they needed something. Thankfully, I made a great friend after college who shares the same interests that I have!"
Would you say that making friends is challenging?
A: "Yes, because I cannot read social cues, it is difficult to tell when people are being sarcastic. I can't tell you how many times co-workers would tell me, "relax, I was just kidding." There have been times that people have become angry with me because I didn't understand that they were joking. They would become offended that I didn't understand the joke. For me, it was just another example of my inability to read social situations. I haven't made an effort to make a friend in years, as it is too difficult for me to navigate at work."
How were you successful in making a great friend, B?
B: "My friend contacted me and made a tremendous effort to become my friend. They kept calling and calling, asking me to join them in activities that I also liked doing. I am not sure how they learned about my hobbies. After all of the calls, I finally started to join my friend in our shared interests. We both like to travel, so we have gone on some trips together. It is nice to have a friend who enjoys the same things that I do!"
How have friendships changed after school?
C: "I am at college now, so things are a little different. There are more people at college and I rarely see the same people in class from semester to semester. It's huge here! I still try to keep in touch with a few friends from high school."
A: "I don't feel a particular need to make friends at work. Unlike school, it is often difficult to find friends who share the same interests that I have. I am also very private and shy and don't like discussing my personal life too much. I had a supervisor who understood this and told me, "So and so is very private, don't you think? That is okay, because not everyone at work wants to make friends. Some people are there to work, and that is perfectly fine!"
B: "Wow, it's been a long time since I was in school. I really don't miss it, to be honest!"
What would you say helped you to fit in to the neurotypical world?
B: "I just love to laugh. I am fairly easy going, so I don't take too many things too seriously. This has helped me very much."
C: "I was lucky to be identified as a young child. My parents were informed about my disorder and they quickly found the right resources."
A: "Still trying to fit in! (laughs) But I have a wonderful family and a few friends who get me. That's enough for me."
I'll address other concerns at another time. Let me know if you have any questions in the comments below!
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