Late Identified Autism Interview: I Don't Think I Masked
This is the 29th interview in my series Interviewing Late-Identified Autistics. Laura is a late-identified autistic. My questions are in bold and Laura's responses follow in regular typeface.
What name and pronouns do you use?
Laura Johnson, She/Her
How old were you when you learned you were autistic?
How did you learn you are autistic?
About 4.5 years ago, my younger grandson was diagnosed with ASD. I decided to read a lot about the subject. From that reading, I recognized many of my own traits. I decided I would like to be diagnosed. The first woman that I saw was local. She was not an autism specialist. She diagnosed me as having many symptoms, but not enough to say I was on the spectrum.
I had learned about AANE (Asperger/Autism Network) and searched for a therapist recommended by them. I came across the name of Bonita Fisher in Bethlehem, PA. I contacted her. She agreed to have some phone sessions with me. After about three such sessions, she did diagnose me with moderate autism in January of 2022.
How did you decide whether to self-identify or diagnose?
I decided I wanted a professional diagnosis because I wanted to be more knowledgeable about myself and autism in light of my grandson’s diagnoses. (Several years after my grandson was diagnosed, his older sibling was also diagnosed.)
How did you feel when you learned you were autistic?
I was not terribly surprised. But it was like a light bulb being turned on in my head. So many experiences in my life then made sense.
How do any of your identities (ex. gender, race, religion, sexuality, etc.) impact your late identification as autistic?
Only my introversion, extreme sensitivity, and social anxiety were impacted. I now had a reason for these traits.
How did your friends and family respond when you told them you are autistic?
My parents were already deceased. My daughter had suspected it for some time. (We had suspected her father was on the spectrum after my grandson’s diagnosis and we started to research ASD.) My sisters were not surprised. When I told a few close friends, they did not have strong reactions.
Did you seek out therapy, coaching, or other forms of structured support for autism?
I have. But there is very little help for adults on the spectrum. And what is to be found is usually not reimbursed by insurance so is very expensive. So, I have not found appropriate care. The only thing I have now is the writings of Jackie Schuld, mostly through Medium. Her writings are very helpful.
How has learning you are autistic impacted your life?
As I believe Jackie wrote in one of her essays, things seem to get worse at first. This is because you see for the first time what is really going on! After a few months though, things improve because you begin to understand yourself and make accommodations. You also begin to understand others better.
Your Current Life
How have you modified or adapted your life since learning you’re autistic?
I consciously pace myself to lessen fatigue and being overwhelmed. I give myself permission to have rest, quiet time and downtime.
In what ways does being autistic enhance your life?
I realize now that I am special in my abilities to perceive the feelings of others and to focus on tasks that interest me. Also, I am very good at being alone.
What are some of the challenges you face in being autistic?
I still have a lot of social anxiety. I have difficulty conversing with others except when it involves topics of interest to me. I tire easily when socializing is involved. I worry a lot about how I will say things to people. Due to what I feel have been negative responses to my efforts at verbal communication, I fear that I will be rejected.
In what ways have you noticed you’re different from neurotypical people (behavior, preferences, communication styles, etc.)?
I am more introverted. I am much more sensitive to sounds than most others. Often, I will “jump” when someone approaches me and I have not seen them. They always say, “Oh, I’m sorry I surprised you!” I often put my hands over my ears when no one else is. I almost always rock when standing in line. I don’t see others doing that.
Do you experience any other mental or physical differences (including disabilities, other neurodiversities, etc.) that impact you? How have these influenced your autistic journey?
I have been a nail biter all my life and am always trying to stop.
If you work, what do you do for work? How does your autistic identity impact your work?
I was a music major, but worked for thirty years in an insurance office. I liked the work itself. But being in an office with so many others, many of whom did not share my personality, interests and culture, was extremely difficult. If I had had my own office, I would have been very happy! Also, I was quite creative at my job. I made up an independent unit, eventually of four employees. I saw a need, identified a resolution and gave it birth (with initial resistance from Management). The unit lasted for 25 years with my replacement chosen when I retired.
Is there anyone else in your family who is neurodiverse, autistic, or otherwise?
My paternal grandmother had schizophrenia and was lobotomized. I believe my father suffered with generalized anxiety.
What helps you prevent or cope with moments of overwhelm?
I try to remove myself from the situation by going off and sitting by myself. I try to stop listening and instead try to be as quiet as I can.
What accessibility/support have you sought since learning you’re autistic? What support do you wish was easier to access?
I wish I could find an affordable therapist who knew a lot about autism.
How have you self-advocated for your needs?
I have told some people (for instance my choir director) so that he can understand why I do not participate in social occasions.
How does your autistic identity impact your friendships?
It has limited them. I had two sisters, so never felt a need for friends growing up. (I also took piano lessons from the age of six and spent a lot of time on that.) Now, my friendships usually revolve around my musical activities. I started on-line dating after a brief romantic affair last summer. I don’t know that I will end up with any friends from that – only if I find a long-term romantic partner who would also be a friend.
How does your autistic identity impact your romantic relationships?
In many ways, I believe. First, I have always been naive and too trusting. Then, there is the verbal communication problem. Finally, Jackie has described the “freezing” that happens to women when they experience sexual activities that they really do not want but don’t know how to stop. I experienced this multiple times. I am now better at expressing myself as soon as such an activity is begun. On the other hand, I have always craved a man’s romantic, emotional, and physical attention. But being shy and socially anxious has made contacts difficult. I am having experiences with on-line dating that I am hoping will help with that. I am seeing a man now, and that experience is going fairly well.
What is your experience with medical systems? Are there ways you feel they can be improved for autistic individuals?
This is a big one! I have been diagnosed throughout my life with depression/anxiety. Many meds have been prescribed for me, and most have not been successful. I currently work with a Psychiatry Physicians’ Assistant who is part of my PCP’s office. She seems to be very understanding and helpful. She is young. I recently told her I feel my problem is anxiety more that depression. She added BuSpar to my meds, and that seems to be helping. But generally the medical establishment does not seem to recognize autistic traits and does not have the training to address the particular needs of autistics.
How did being an undiagnosed autistic child impact your childhood?
I was always absorbed in my family and practicing the piano. Once I discovered an old report card from elementary school in which a teacher noted, “Laura does not play with the other children.” I did basically keep to myself except to have some boyfriends that I had some romantic feelings for.
What ways did you camouflage or mask?
I don’t think I did. In the ‘50’s, I don’t think it was so necessary to be an extrovert. Life was quieter, slower and much less stimulating that it is now. With limited TV, no computers of cell phones, no 24 hour news coverage, etc., it was an easier time for very sensitive people. I remember my first year in college (an all girls’ school), the furnishings in my room were a bed, night stand, bureau and desk. That was it! The only phone was a pay phone in the hallway of each floor! The only TV was in the first floor common room. I seldom saw it turned on.
How has your identification as autistic changed how you view your childhood or earlier periods of adulthood?
It has just very much illuminated to me why I was the way I was.
How did being an undiagnosed autistic impact romantic relationships?
I did marry when I was 26, and it was to my high school sweetheart. It turns out that he was also on the spectrum. (He died about five years ago.) Those symptoms showed up in him after college when he entered the “real world.” The marriage lasted only a few years. I was not able to find a successful partnership after that although I had several relationships. Maybe one of the men I am finding on on-line dating will work out. But, I don’t have high hopes for that. This is partly because I have been alone for so long and fear being with someone all the time. Maybe my mask will be removed! I think probably deep down, I am afraid of being found out and rejected.
Talking to Others About Autism
How do you describe autism to people who are not familiar with it?
I describe the main symptoms of hyper-sensitivity and anxiety. I also explain that the spectrum is very, very large.
What do you wish others knew about autism?
That people on the spectrum are not insensitive to others. Instead, they are very sensitive to the feelings of others. They just may not express it the way neurotypicals do. Also, that they can be very productive if given the right environment – that their sensitivity and anxieties are not choices, but instead are deeply ingrained physical traits.
What is your advice for someone who thinks they might be autistic?
I think they should get a professional assessment. If you are diagnosed as autistic, it really helps you understand yourself and takes steps to make your life easier.
Are there any resources (books, articles, videos, etc.) you would recommend for people who just learned they’re autistic?
I recommend Jackie Schuld’s writings. I also recommend AANE which I described above.
Are there any resources (books, articles, videos, etc.) you would recommend for people who are exploring if they might be autistic?
Same as the question above. For younger people, there are many more resources in terms of doctors who will do assessments.
Are there any autistic characters in books, tv, or movies that accurately reflect autism? Which ones?
I have seen a commercial on TV for Autism Speaks I believe. It shows a little girl standing off on the side of a playground during school recess. Another child kindly comes and invites the little girl to come and play with the others. She does, even as she remains gentle and quiet. This reminds me of myself when I was a little girl.
Are you involved in any forms of autistic activism?
Just helping my grandchildren privately.
Connecting with You
If someone would like to connect with you, how can they reach you?
Via e-mail: jjohnson1123@comcast.
Thank you for reading. I’m looking for more late identified autistics to complete written interviews just like this one. I’ll send you the questions and you can complete them on your own time. Please email me at email@example.com if you are interested.