Jackie Schuld Art Therapy Blog

Late-Identified Autism Interview: Not Knowing I was Autistic Made Everything Very Hard

This is my 12th interview in my series Interviewing Late-Identified Autistics. The individual who completed this interview would like to remain anonymous. My questions are in bold and the individual's responses follow in regular typeface.

 

How old were you when you learned you were autistic?

I was 32 years old when I was diagnosed in 2019.


How did you learn you are autistic?

I learned I was autistic after being evaluated and tested by a neuropsychologist who specializes in developmental disorders.


How did you decide whether to self-identify or diagnose?

I chose to pursue formal testing after experiencing challenges at work and my personal life. I had been two years into my first long-term relationship (with my now husband) and was experiencing relationship challenges that I didn’t understand.


Image selected by the interviewee

How did you feel when you learned you were autistic?

Accepting that I was autistic was very challenging. I didn’t feel good about myself. I (like most people) thought autism was mainly about being nonverbal along with other behavior issues. After talking with my therapist, reaching out to support groups, and researching, I began to understand more about it.


What is your gender? How do you feel this impacted your journey as an autistic individual?

I identify as a gay male. I can’t think of how this affected my journey.


How did any other of your identities (ex. race, religion, sexuality, etc.) impact your late identification as autistic?

I always knew I was different growing up. I was in special education classes most of my K-12 life. My father and siblings always felt they had to protect me. I was very sheltered and didn’t have many friends. I came out as gay when I was 21. This coming out was very dramatic and my family (going into protector mode) thought my friend turned me gay.


How did your friends and family respond when you told them you are autistic?

My family and friends barely reacted. It was almost like they ignored me. At least there was drama with being gay, but being autistic, they just ignored it and still do. My husband (we met in 2017 and married in 2021) is still getting used to it and at least acknowledges it, but my family doesn’t. It’s as if they don’t want me to have a “label” but still treat me like I am disabled.


Did you seek out therapy, coaching, or other forms of structured support for autism?

Yes, I did seek out therapy/support for autism. The psychologist who diagnosed me has been super supportive but is extremely busy, so it’s hard to receive ongoing support. I will also add that it’s EXTREMELY hard to find support for “high-functioning” autistics. I prefer not to label one as high or low function, but for the purpose of this interview, I will use these terms. I remember going to Voc Rehab, and the counselor told me that I “made more money than him” and that I didn’t need voc rehab. This was very insulting. Late-diagnosed / higher-functioning autistics like myself have become so phenomenal at masking that nobody believes us.


How has learning you are autistic impacted your life?

Learning that I am autistic has made me more of how I am different from others and has helped me identify my challenges. For example, I logically know that people take advantage of others (myself included) as an autistic person; we forget that people do this in the moment and are easily tricked. I ended up filing Chapter 7 Bankruptcy last year because of financial issues I ran into with credit cards and student loans. I didn’t understand how any of these worked and let it go on for years until last year. I am way better at finances today, but I was at a point where I needed to do something.


Being gay and autistic is also very challenging. Before I knew I was autistic, I never knew why nobody wanted to date me long-term or be a friend to me. Other gays would go out to the club with me or hook up with me, but nobody wanted to date me long-term. I would be ghosted after a couple of dates. After learning I was autistic, I now know why. Behaviors/mannerisms that were “normal” to me weren’t normal to others. I learned more about this when I found the man who would be up to the challenge and marry me.


Your Current Life


How have you modified or adapted your life since learning you’re autistic?

Yes, I have worked on trying to adapt better to my environment and learn about resources to help.


In what ways does being autistic enhance your life?

Being autistic really doesn’t enhance my life. I am an overthinker/analyzer, but I wouldn’t call this an enhancement. Autistics are stereotyped as geniuses, but this isn’t true for all of us.


What are some topics or activities you’re passionate about?

I don’t have a single “special interest” like the stereotypical autistic person. My interests vary. I do like documentaries on WWII, astrology, mental health, politics, and business, but I don’t have a single “special interest.”

If you work, what do you do for work?

I work in higher education. My roles have included administrative support. I currently work as a fiscal/business analyst helping faculty with their budgets.


Is there anyone else in your family who is autistic?

I suspect 2 of my brothers might be, but nothing official.


What are some of the challenges you face in being autistic?

Being autistic, I am easily fooled, taken advantage of, and discriminated and or made fun of at work and in interview processes, struggle with interpersonal relationships, difficulty with driving and multitasking, etc.


What helps you prevent or cope with moments of overwhelm?

I will listen to music to cope, rewatch favorite shows or movies, sleep, or talk to someone. I am very sensitive to sounds and I love TV / movie scores. I will listen to my favorite ones depending on what emotions I am feeling.


What is your experience with medical systems? Are there ways you feel they can be improved for autistic individuals?

Medical systems (and all systems) should have staff trained to work with autistic patients/customers. I find that staff/representatives are desensitized and don’t care about us unless we disclose we are autistic. In short, better training.


Your Past


How did being an undiagnosed autistic child impact your childhood?

It impacted my life tremendously. Not knowing I was autistic made everything very hard. If I was diagnosed earlier, maybe my parents would’ve made better decisions for me and got better resources to help me. I knew I was a “special kid,” but this did little to help me. Maybe I wouldn’t have made the poor decisions I made with finances and others if I knew I was autistic before.


What ways did you camouflage or mask?

This is very hard to describe in words. All I will say is you do what you are told and behave based on what is considered appropriate or not. In a way, this behavior is forced and unnatural as ABA is to autistic kids.


How has your identification as autistic changed how you view your childhood or earlier periods of adulthood?

It makes me feel crappy about my childhood, and wish my parents would’ve done more for me instead of ignoring my challenges. I also wished my parents would taken more of an interest in my life so I wouldn’t have made bad mistakes.


Talking to Others About Autism


How do you describe autism to people who are not familiar with it?

Autism is very complicated to explain to people who don’t know or won’t do any research. Since it is a spectrum, how it affects me might affect someone else differently.


What is your advice for someone who thinks they might be autistic?

I would suggest they do research and try an online assessment. This was very helpful to me. I’d also suggest joining a support group.


Are there any resources (books, articles, videos, etc.) you would recommend for people who just learned they’re autistic?

I would suggest they look up the Autistic Self Advocacy Network or anything by Temple Grandin.


Are there any autistic characters in books, tv, or movies that accurately reflect autism? Which ones?

Most of the characters in entertainment or over-exaggerated and stereotypical. The show that I have enjoyed recently is the Korean language Netflix show “Extraordinary Attorney Woo”. Although she like others has stereotypical traits, I feel very connected with her character. The show does a great job portraying her experience as an autistic lawyer/ adult.


Connecting with You


If someone would like to connect with you, how can they reach you?

They can message send an email to RNbudd86@gmail.com and mention where they found my email.

 

Thank you for reading. If you are a late-identified autistic, I would love to have you participate in this series. Please email me at jackieschuldart@gmail.com if you are interested.


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