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Jackie Schuld Art Therapy Blog

Finding Ways to Shine on My Own Terms: Late-Identified Autism Interview

This is the 34th interview in my series Interviewing Late-Identified Autistics. Tanja is a late-identified autistic. My questions are in bold and Tanja’s responses follow in regular typeface.

 

What name do you use and, if you want to share it, what pronouns do you use?


Just call me Tanja.


How old were you when you learned you were autistic?


43


How did you learn you are autistic?


My friend who works with disabled children once told me casually, “You are also autistic.” I didn’t understand what that meant and went home to read up on it. It immediately made sense to me. I had no clue and up to this point. I always thought most people were also like me and needed a lot of quiet and time alone.


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


I wanted a diagnosis from a doctor and tried to get it shortly after reading up on autism. Luckily, it didn’t take much time for them to diagnose me. I wanted to know quickly so I could apply for help but little did I know then that there would be no real support after the diagnosis.


How did you feel when you learned you were autistic?


I already knew it was true once I had read up on autism. It all just made sense to me. At first, I didn’t really put too much of my attention into it, but as I reflected, I slowly started to understand myself better. Eventually, I finally understood why I would do certain things in certain ways, why I would freak out in certain situations and why I needed to be alone so much, etc.


Throughout the following years, I learned how to set up routines for myself, how to keep my stress levels low, and how to organise myself better. I sought out places with less noise, started carrying earplugs and headphones all the time, and finally found a place to live and thrive in a quiet apartment in the countryside.


Tanja enjoying herself at the water's edge.

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


At first, I only told a few of the people who had closer contact with me and only if the situation required me to disclose it. To this day, most friends and family members don't understand what the word "autism" means. They either think I am joking or just immediately dismiss it. They cannot fathom that I might be weak sometimes too or that I might need help. A lot of autistics don't look like they need help because we are overachievers, smart, and/or good at school. We probably exude the energy that we don't need any help because of those factors.


I ventured out this year to interview other women on the spectrum to ask if they have similar experiences and found out that they do. I publish those interviews on my YouTube channel Amazing Autistic Women Worldwide. This is work that has set me up to deeply transform myself. I love interviewing these women and am very grateful for being able to do such transformative work.

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


Yes, I sought support for autism right after my diagnosis. Unfortunately, there was and is almost no specific support for autistic adults where I live in Switzerland. The support efforts there are mainly just for kids. The only systems available for adults are unemployment or disability supports which take several years to get approved. Once approved, you might get a coach or, at best, financial support. I've found that smaller, privately run associations are more helpful, but they are not free.


With all this in mind, I chose to support myself because there is literally no adult autism-specific help where I live other than privately paid coaching. I chose to improve my speaking and conversational skills by doing interviews on YouTube and talking to alternative therapists of all kinds. I did this steadily for 2 years and feel that it helped me a lot. I worked very intensively on healing my own trauma through these alternative methods, through personal development courses, coaching, and from public speakers and books.


Your Current Life


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


I am no longer the same person that I was back then. Learning that I am autistic helped me to connect more deeply to myself and listen to myself, my body, and my intuition. It helped me to re-structure my days and honestly, my entire life. I finally understood why I had certain difficulties in the areas of relationships and jobs and started looking for solutions and ways to improve.


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


  1. I absolutely need to live alone. Therefore, I spend most of my year in a country that is cheaper to live in than my own. This methodology is called geo-arbitrage. It allows me to afford to live alone. I wouldn't be able to do this in the country of my origin. I would have to take a full-time job again and probably have to share an apartment to afford living expenses. I know from experience that just leads to burnout and seizures and that's not even mentioning the psychological impact it would have on me. On top of having to change jobs all the time in my past, I also had to move nearly every year because cohabitation just doesn’t work for this autistic. My main requirement is a quiet home and an international community where one can come and go whenever one wants. I am lucky to have found this here in Bansko, Bulgaria. It offers me all that I require and I can remain very stable in this way.

  2. Getting help is a major challenge. I am often refused help. I am not only autistic, but I also have back problems and have had back surgery, another invisible handicap. When I ask somebody to help me lift or carry things, I often get denied. These are very painful moments. Through the interviews I conduct with other autistic women, I have learned that many of us have that in common. It is of course very painful for anyone to be ignored, dismissed, and rejected but we seem to face it every day. It is hard to stay positive with the challenges that autism presents and on top of it all, to be dismissed or told that “there is nothing wrong with you."

  3. Smells and loud, sharp unexpected noises can be a huge trigger for me, as well as unexpected changes in events.

  4. Making a living can be a struggle for some autistic people. Regular work in a noisy office with a radio on in the background is just too overwhelming for me. I can try to concentrate for some time, but it doesn't work in the long term. In the past, I wasn't able to keep a full-time job for more than 2 years. Now, I opt for recurrent temporary jobs doing quiet, concentrated work or part-time freelance work. Sadly, it feels like my career never really became well developed, even though I feel I might have great leadership and other special skills.

  5. Autistics are very empathic. Our antennas are so fine that we take in a lot of emotions, noise, and information from outside sources. It can be really hard to reconnect back to our own core being, our own essences. For me, stripping away other people's emotions and checking back into myself is a daily task. My heightened sense of empathy brings a lot of identity confusion and further complicates my life, who I am, who I want to be, and how I want to express my gifts. I am now building my own business which may take a lot more time for an autistic to do than it would for neurotypicals. Self-employed work or even just working part-time or seasonally is a good solution for me. I used to work seasonally for a few months, then would return to my own 4 walls for the rest of the year to do my own thing and organize my own schedule. I think there is a lot of potential in the area of self-employment for autistics. If we can find ways to shine on our own terms, then I believe we can become very successful.

Tanja overlooking the water in solitude.

What helps you prevent or cope with moments of overwhelm?


Meditation, downtime alone, walking and grounding in nature, strict morning routines, and of course, immediate removal from a triggering situation can all help me prevent or cope with moments of overwhelm. Proper scheduling, lots of quiet time, and living alone all help, too. I also micro-dose social engagements. For example, I can go dancing for a few hours but would never go on a full day or an overnight trip. I love to travel and explore new places, but I just need to travel alone, in the quiet, and for small periods of time.


How does your autistic identity impact your friendships?


I have always found it difficult to make lasting connections, but over time, I have found a few rare and deep connections. We might not live in the same countries, but we are happy to keep in long-distance contact until we see each other again. It doesn’t feel like those friendships mean any less just because we don't see each other all the time.

Generally, friendships have been something of a mystery to me. I have always struggled to keep friends. I don't seem to know any of the invisible social agreements and because of this, I seem to break social rules. I am lucky to say that I have friends where I live. Not all my friendships are very close but it helps that I give something to the community where I myself can be included. I built a women's group here in Bansko and organise regular meet-ups so women have a support network in town. I have found a way to include myself by including others.


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


I gave up on traditional medical systems a long time ago. There have only been a few very rare occasions in which I felt I was taken seriously by medical professionals. Most of the time, I got sent away when I went to see a doctor. They could not see anything “wrong” with me and told me I have “nothing” when lab results or x-ray pictures were present. This has happened to me repeatedly and I almost lost my life to medical negligence.


In my opinion, regarding autism or otherwise, the medical system definitely needs to change. I think the future of medical systems will be very different from what we see today. I have found that I can get much better help from YouTubers who first educate me about diseases and then offer consultations than I can from a traditional doctor. Each of the comments on the feed of a YouTuber acts as a testimonial, so I can read and find out if they are a good fit for me. However, if I go to see the doctor down the road or check in at our public hospital, I don't know what I will get or if we even share similar worldviews.


We autistics need educated staff, maybe even those who are autistic themselves, so they can understand us better and know what kind of limitations we struggle with. How are therapists who don't even know what autism is supposed to help us? In my experience, I think that we feel more understood amongst ourselves.


Lastly, I believe we also need to help ourselves by taking responsibility for our own health. I know this can be a hard pill to swallow. I went through a self-pity stage when I was mistreated by the medical system, but when I started advocating for my own health, I become empowered and felt reborn. There was a point when I realized that no one was going to come to rescue me and so I needed to rescue myself. I know now that I can use any tools along this journey, whenever and wherever I find them, to aid me.


Talking to Others About Autism


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


You are not alone. There are many other autistics out there. Find them and connect! Be kind to yourself in this lifetime. I strongly believe that we autistics are here to bring something truly amazing to the world. Let's find out what it is!


Connecting with You


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


You can connect with me on LinkedIn, watch my autism interviews with Amazing Autistic Women Worldwide on YouTube, follow my channel for Women on the Spectrum on YouTube, and/or support my fundraiser But You Don't Look Autistic at GoFundMe.

 

Thank you for reading. I’m looking for more late-identified autistics to complete interviews just like this one. I’ll send you the questions and you can complete them on your own time. Please email me at jackieschuldart@gmail.com if you are interested.

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