Autism Interview #200: Jaime A. Heidel on Late Diagnosis and Autism Inclusivity

Jaime A. Heidel is a late-diagnosed autistic woman who writes, advocates, and translates communication between the neurotypes so that autistic and non-autistic people better understand each other and communicate more effectively. You can find her on her Instagram page asking questions, sparking lively discussions, and gathering detailed information about the autistic experience to increase understanding and decrease the lifelong inter-neurotype miscommunication that leads to complex PTSD. This week she shared her experience growing up undiagnosed and how society can make strides to improve autism inclusivity.

What led you to pursue a diagnosis at age 35?

In 2008, when I was 28 years old, a co-worker said something to me that I guess was supposed to be a joke, but I took him literally, and he had to explain he was kidding. Out of frustration, I googled, “Why do I take everything so literally?” and the term Asperger’s syndrome popped up, and suddenly, my entire life made sense.

After researching everything I could get my hands on for a few months, I finally told everyone I knew why I was so different from others. For some reason, I also went on a mini “apology tour”, writing letters to people trying to unravel and explain misunderstandings that had taken place years prior.

The problem with telling people was, my family didn’t believe me. A few years later, when I was 34, I ended up having a complete mental health breakdown, and I was hospitalized. I was deep in autistic burnout, but I didn’t know it at the time.

About six months later, my therapist officially diagnosed me with Asperger’s syndrome (a now-defunct term the autistic community no longer uses), and I feel like it’s the day my life as an authentic autistic began.

In what ways were the schools you attended inclusive of autistic students? Where did they lack?

I went to public school in the 1980s, so there was no such thing as inclusivity for autistic students. Granted, if a student had high support needs, they would be in a modified classroom, but for those of us who were on the lower support needs end of the spectrum, we weren’t even noticed let alone accommodated. If anything, we were just seen as “weird”, “rude”, “disruptive”, or “dumb”. I know, personally, my autistic/ADHD traits were seen as purposefully disruptive and manipulative cries for attention.

Someone younger than me might have a different story, though. Public schools have become more inclusive as awareness has increased.

You’ve written articles about behavior confrontation and considering autism as an entirely different language. This is tricky when this isn’t the public perception and the expectation to conform permeates cultures. Do you have any advice for NT or ND people who are struggling with differences and misunderstandings around tone of voice?

It is tricky, and I think that the best thing to do to reduce misunderstandings around social differences is to learn. If a neurotypical person has an autistic person in their life, I highly recommend reading books about the autistic experience written by autistic authors.

To use your example of tone of voice. Many autistic people have been traumatized simply because of this one difference in inter-neurotype communication. I, like many autistic people, have a naturally flat, monotone voice. It’s only because I purposefully modulate it (a process called ‘masking’) that I have the type of inflection neurotypical people expect to hear when I speak.

When I was younger, however, I had no idea why someone would suddenly yell at me from what I thought was “out of nowhere”. I didn’t realize they were responding to my tone of voice (which I could not detect), and they never told me specifically what the cause of their reaction was, so I was just left to wonder in stunned silence why what I thought was a perfectly pleasant conversation abruptly ended with someone calling me “rude”.

Tell me about your website the Articulate Autistic. Why did you create it? Who is your audience?

I started a video series on YouTube back in 2019 called “Why Autistic People Do That”, and it evolved from there. I had been writing about chronic illness at the time, but I noticed myself spending more and more time making videos to explain autistic behavior, and, in 2020, I officially switched over and started making content about the autistic experience exclusively.

I created my website because I realized that so many of an autistic person’s natural traits are misconstrued by neurotypical society, and when neurotypical people react to us, we autistic people often cannot connect their response to our behavior, which often results in the development of complex trauma.

My goal with The Articulate Autistic is to prevent more children, teens, and young adults from being traumatized by being perpetually misunderstood, so my audience is primarily neurotypical parents of autistic children, as well as neurotypical spouses, co-workers, friends, and family who have autistic loved ones.

Explaining why autistic people do what we do is the most rewarding thing I’ve ever done. Those “aha” moments that neurotypical people have are beautiful to behold!

Rate the society/culture/community you live in on autism/neurodiversity acceptance. What is going well and where can it improve?

As a society, I believe that we are slowly moving from awareness to acceptance when it comes to autistic people, and I think it’s a promising beginning. With more autistic creators emerging on social media to share their stories and experiences, knowledge is spreading fast, and that’s helping to fuel diversity and inclusion initiatives such as neurodivergent-inclusive employment opportunities and sensory-friendly shopping experiences.

However, I think we have a long way to go as a society. In many ways, I still think we are at the ‘trending’ stage of neurodiversity inclusion, meaning many people are ‘jumping on the bandwagon,’ so to speak, but they don’t yet fully understand the learning curve or the work it takes to be truly inclusive to neurodivergent people.

I also believe we can greatly improve neurodiversity inclusion by adding more autistic people to management and leadership positions, as well as having actually autistic actors play autistic characters in TV and film.

As it stands, our media showcases a very narrow and biased slice of the neurodivergent experience, so I think showing broader, more diverse examples of the autistic experience would help with more realistic and sustainable inclusion practices in the real world.

What are some of your current hobbies, work interests or things you are most passionate about?

When I’m not writing, I like to read, play The Sims, make beaded necklaces, listen to podcasts, and watch scary movies.

Connect with Jaime

Instagram: @thearticulateautistic 

Website: The Articulate Autistic

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