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Jackie Schuld Art Therapy Blog

It’s Not Something That Can or Needs to Be ‘Fixed’: Late-Identified Autism Interview

This is the 36th interview in my series Interviewing Late-Identified Autistics. Bell is a late-identified autistic. My questions are in bold and Bell’s responses follow in regular typeface.

 

Bell amongst the plants and flowers (photo by Western Rose Photography)

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


Bell (they/them)


How old were you when you learned you were autistic?


27


How did you learn you are autistic?


After a string of challenging romantic relationships and hospitalizations in my early 20s, I sought professional help. I was continuously having meltdowns and didn’t understand what they were or why they were happening.


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


Despite great medical care in Canada, private autism assessments are not covered by public healthcare. So, I am still awaiting a formal diagnosis, which could take more than 5 years. Until then, I have been diagnosed with BPD and bipolar II disorder. Both of these could also be accurate, though when I care for my autism, neither applies.


"Rest" by Bell (a depiction of burnout recovery)

How did you feel when you learned you were autistic?


When I learned I was autistic I felt a great sense of relief. I then entered a few years of denial because I didn’t really understand how to work with my brain rather than constantly attempting to change it. I got stuck in a productive mentality, which only led to more meltdowns and more burnouts.


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


I have a female body, which lent to my late diagnosis. I identify as queer and gender fluid, meaning I am somewhat marginalized already and a little sensitive when in public.


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


My friends and family were mostly supportive when I told them about my autism.


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


I didn’t specifically seek out therapy for autism, though my therapist seemed to know what she was dealing with from the time we met.


How has learning you are autistic impacted your life?


Learning that I am autistic has allowed me to accept parts of myself that I formerly attempted to change or hide. Recognition allows me to acknowledge and respect my own boundaries and share myself with others in a way that I know and is comfortable for me.


Your Current Life


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


Bell sitting in nature with a smile (photo by Western Rose Photography)

I only work part-time. I adopted and trained a service dog. I spend much of my time doing what I like to do rather than attempting to be someone that I am not. I spend a lot of time resting and sitting quietly, reading, or making art. I allow my mind space to be calming and comforting, not seeking stimulation. I get plenty of that indirectly.


In what ways does being autistic enhance your life?


Being autistic has allowed me to be authentic in a way that I didn’t think possible. It allows me to explore my special interests deeply and to find others with similar interests and understandings.


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


A few of my challenges are sensory sensitivities (low tolerance), exhaustion from masking, and social anxiety. This can make leaving the house in a large city quite challenging. We go out daily.


In what ways have you noticed you’re different from neurotypical people (behavior, preferences, communication styles, etc.)?


I like to be alone. I have trouble with time pressure. Being somewhere at a certain time or for a certain amount of time can stress me beyond measure. I don’t use eye contact to connect with others. I dissociate, a lot.


If you work, what do you do for work? How does your autistic identity impact your work?


I work part-time at a sensory deprivation studio. I am also a trained mental health practitioner. My autistic identity impacts my work mostly because it limits the number of hours I can work per week. In the past, I have worked as a freelancer to allow myself the freedom to work when and how I needed to. I may return to that, though I am enjoying exploring other modes of being at the moment.


What helps you prevent or cope with moments of overwhelm?


If I’m out in public, there is almost nothing that I can do to prevent overwhelm. However, my service dog in training, io (ee-oh) is much help. He usually puts his head on me or lays quietly with his head down which helps me to ground despite being overwhelmed. He helps me beyond measure, and we go everywhere together.


Bell enjoying the beauty of nature (photo by Western Rose Photography)

What skills or strategies have helped you to work with your autistic mind?


Helpful strategies include employing acceptance and patience with myself and treating myself as a small child even though I am not that on the outside. I have found learning more about autism endlessly helpful as well. I like to read the stories of other autists and listen to their experiences.


What accessibility/support have you sought since learning you’re autistic? What support do you wish was easier to access?


Since learning I was autistic, I have trained my service dog, io. I do wish that trained service dogs were easier to come by, or more financially available because the support he offers is unmatched.


How have you self-advocated for your needs?


To self-advocate, I have quit jobs that weren’t serving me. I have also asked for special consideration at jobs to suit my needs, such as bringing io along with me.


How does your autistic identity impact your friendships?


Mostly, if they cannot meet me where I am, our friendship will not last. Ableism is quite a deeply internalized mechanism, and I am quite sensitive to it. That said, I’m open to talking to anyone, no matter where they come from or what they believe.


How does your autistic identity impact your romantic relationships?


In many ways, I have been treated as if my autism makes me ‘hard to love’ because I fixate quite strongly; however, working with a therapist has helped me to understand this mechanism and to use it to my advantage with special interests rather than fixating on a person.


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


I have had a pretty tumultuous experience with the medical system. My autism was pathologized as a personality disorder and because of this, I was treated quite roughly by a few different psychiatric wards here in Canada. I believe that awareness around autism and what a meltdown can look like would really help the medical system show up in a compassionate way for autists.


Your Past


How did being an undiagnosed autistic child impact your childhood?


I learned to mask very young and often ignored my own feelings. Though I got by in childhood, by the time I was a teenager I was greatly alienated from myself.


In what ways did you camouflage or mask?

"Poise" by Bell (a depiction of the mask)

The biggest way that I masked was by creating a musician persona. I walked around in it and lived in it until even I forgot that it wasn’t actually me. But then in my early 20s, the persona started to crack and exhaust my resources. I met people that could see through it, and they challenged me to do the same, to let it go. I fought it for a long time, but eventually the pain of continuing to ‘put on’ was much greater than the pain of letting go.


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


In a way, I feel quite sad that I didn’t realize it earlier because I was quite hard on myself (and I still can be). I missed opportunities to deepen my relationship with myself and to grow as a person, into and through my autism. Throughout my journey, I have gone through stages of grief and shame for the person that I became, because it was so far removed from the person that I am.


How did being an undiagnosed autistic impact romantic relationships?


Because I was alienated from myself, I tried to fill this gap with other people. I fixated on them, making them my ‘everything,’ which led me to lose myself further. Now that I know that I am autistic, I am more careful with where I place my fixation. I see my hyper-focus as a strength that can be used productively. This is not to say that loving and being romantic is not productive, but a fixation can be overwhelming for any relationship. Love grows naturally, as we do.


Talking to Others About Autism


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


I try not to describe autism to people, rather, I let them do their own research. I can describe my experience, but it’s severely limited in that it’s only my experience of autism. So, if someone is interested in getting to know me and my autism, I will explain. If they are interested in getting to know autism in general, I will direct them toward a pursuit of knowledge.


What do you wish others knew about autism?


It’s not something that needs to be (or can be) ‘fixed.’


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


Rest. Research. Take it slow.


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


At the moment, I would recommend anything by Devon Price (especially if you also identify as queer). Medium is also a great resource for diagnosed or questioning autists.


Connecting with You


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


I can be reached via email, bellwatt@icloud.com


Do you have any works, websites, or other creative ventures you would like to share with others?


I am beginning to build my presence on Medium: bellwatt.medium.com and I am also hosting a monthly neurodivergent reading group. Email me for more information.

 

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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