top of page

Jackie Schuld Art Therapy Blog

Struggling with a Lifetime of Burnout: Late-Identified Autism Interview

This is the 33rd interview in my series Interviewing Late-Identified Autistics. Natalie is a late-identified autistic. My questions are in bold and Natalie's responses follow in regular typeface.

 

What name and pronouns do you use?


Natalie (she/her)


How old were you when you learned you were autistic?


45


How did you learn you are autistic?

I first took an interest in autism during my final year of university studies. I was studying Linguistics and decided to write my thesis on autism and how it affects communication. At the time, all the material available to me was written by neurotypical doctors and ‘experts’. And much of what I learned in those early years of research, I have since had to unlearn.


A warm tinted black and white photo of a mom carrying her son on her back in front of a brick wall.
A warm tinted black and white photo of Natalie carrying her son on her back when he was younger.

20 years later, I met my husband, who disclosed fairly early on that he was autistic. We went on to have an autistic son, which is when the real research started, and I shifted to learning only from the autistic community. At this time, I firmly believed myself to be neurotypical, but identified so strongly with the experiences of autistic people, but, as most of the autistic people in my life - personally and professionally - were men, I wasn’t aware of how differently it can present in women.

I have struggled with a number of things throughout my life - most prominently a lifetime of burnout. I spent my teens and early adulthood back and forth to doctor’s appointments to try to get to the root cause of the tiredness. Over that period, I was diagnosed with glandular fever, chronic fatigue syndrome, ME, food allergies and a host of other misdiagnoses - none of which really made sense.

Last summer, at the age of 45, I attended a neurodiversity event. During that event, I met a number of autistic women. Not long into the event, I had a light bulb moment. For the first time, it dawned on me that I might also be autistic.

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

Having talked openly about neurodivergence, and, specifically, autism, at a number of previous work places - believing I was doing so as an ally and advocate - much of what I had talked about was the presentation of autism in men. I knew I didn’t fit the stereotypes, and I honestly didn’t think anyone would believe I was autistic. I’m not what most people would expect an autistic woman to ‘look’ and behave like. For this reason, and to satisfy my own self-doubt, I felt it was critical for me to get formally diagnosed, which I went on to do just a couple of months after first believing myself to be autistic.

How did you feel when you learned you were autistic?

When I realised I was autistic, I went through a roller coaster of emotions. At first, I felt an enormous sense of relief, and even euphoria. Everything I had struggled with, and things I could do particularly well that others couldn’t, finally made sense. I had a sense that for the first time in my life, there was a light at the end of the tunnel in relation to the constant and extreme burnout I had experienced for 40+ years.

As many late diagnosed autistic people do, I spent a significant amount of time reflecting and replaying my life through this new lens, which was extremely draining at times. And then the grief and confusion set in.

Grief for the person I thought I was, and the person I thought I would become. And confusion because it also dawned on me that the many neurotypical people in my life, both personally and professionally, probably didn’t understand me as well as I thought they might - nor did I probably understand them.

It made me question everything, past and present, and I started to experience some feelings of self-doubt - something I am still working through.

I also became hyper aware of situations I find challenging. There were many things I had simply pushed aside or psychologically buried for years because I was aware that other people didn’t find them challenging - so I pushed on through.


The other thing that happened, having been totally unaware I had been masking for most of my life, was that the mask immediately fell off. I became unable to mask any longer, and this has had both good and bad consequences (particularly the latter in the workplace as I experimented with how open to be about being autistic and the accommodations I needed to feel comfortable in the workplace and allow me to do my best work).

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

As an autistic woman, I have discovered a new community of women who were so often diagnosed later in life and have spent a large portion of their lives misunderstood and tired. There is an increasing amount of autistic-led information about the autistic experience from all walks of life, but not enough of it makes it into mainstream media and resources.

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


When I first learned I was autistic, it was life changing. I felt the need to tell everyone I knew and met. This was met with a variety of responses, right from “No shit, Sherlock”, to, “Oh, but you don’t look autistic”, to, “I’m so sorry." My close family and friends were mostly not surprised. Some had even suspected but been unsure whether they should broach the subject with me. The jury is still out on whether I wish I had known earlier.

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

I found, and continue to find, most of my support from online autistic communities. There are some wonderful ones on social media platforms and there are a couple in particular where I feel like I have found my kindred spirits. Even just having the opportunity to share our experiences with people who understand and feeling validated by the experiences of others has been an enormous source of strength and encouragement.

How has learning you are autistic impacted your life?

Learning I am autistic has been good and bad. I finally feel like I have some answers, and I’m also able to appreciate more fully some of my autistic ‘super powers’. It has also led to a lot of soul searching and, at times, confusion, and certainly led to some experimentation with how I talk about how my brain works and what allows me to do my best work in a professional setting.


Your Current Life

In what ways does being autistic enhance your life?

There are many things I can do because I am autistic - some of which might seem surprising given the false myths and stereotypes about and associated with autistic people.

For example, one of the biggest myths about autistic people is that we lack empathy. In actual fact, most autistic people are highly empathetic, so much so that some autistic people find it overwhelming to express. This can be both good and bad. Bad, because I feel the pain and struggles of others so deeply that it can physically hurt. There are certain things in my life that I can’t allow my mind to wander towards - such as the death of my father. And there are certain things I can’t watch or read about in the news because they are too painful. Good, because my ability to be hyper empathetic means that I can put myself in the position of a large and diverse set of people when managing teams, organising events etc. and leave no experience unconsidered. This makes me an excellent organiser of events and a great people manager. I’m also a pretty excellent present buyer!


In addition, autistic people tend to learn differently to neurotypical people - this is sometimes referred to as forest learning vs tree learning. Autistic people will tend to need to understand all of the details that make up the whole, and validate any assumptions that have arisen due to single points of data. This means we tend to draw more accurate conclusions. This is something I pride myself on particularly in a professional setting.


I also have the ability to consume vast amounts of information, let it noodle around in my head for a few hours and spit out something concise and easily consumable that tends to appeal to the masses. I hadn’t realised until recently that not everyone can do this!

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

Part of my autistic experience is an overwhelming need for truth (and justice). What can be a throwaway false comment or narrative, can literally sit with me for days, weeks, and sometimes until I completely remove myself from the situation. At times, I have struggled, particularly in a professional environment, with false statements that have been made (not necessarily about me - it isn’t about being personally affected by the lie, it is about the deviation from the truth). I have found it particularly hard to let certain things go at times and don’t do well in settings which are highly political and conversations not based on truths.

Equally, whilst my ability to hyper focus comes with many positive aspects, for example, being able to get a large amount done in a short amount of time, it also means I am extremely susceptible to burn out.

I also suffer from an extreme over-sensitivity to sound. I find it close to impossible to focus on my thoughts and work effectively when there is any sound around me at all - even sounds that most people won’t notice, such as someone’s watch ticking, a pipe clinking on the floor above, the tapping of a colleague’s keyboard. I have found many coping mechanisms over the years, such as noise-cancelling headphones, but being physically in an office is challenging for me and feels like an 8 hour assault on my senses - not to mention the overwhelming audio and visual stimulus I encounter on the commute to and from the office.

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

I think one of the most obvious differences from most (but not all) neurotypical people is my directness. I will always say it as it is, and whilst I will always try to be constructive and avoid offending anyone, I am aware that I can come across as incredibly blunt. There are a couple of reasons I am, and am able to be so direct. One is back to that overwhelming need for truth and facts. The other is that most autistic people do not feel the need to conform. What I mean by that is that we tend not to adjust our communication to what might be perceived as popular opinion. It matters more to me that what I say is correct than whether what I say will lead to me being popular.

I also have a heavy preference for receiving information ahead of time so that I can consume and process it before drawing conclusions, making decisions and presenting back any findings.

I stim, in fairly subtle ways, but I have a number of behaviours I had always believed to be ‘quirks’ or ‘weird habits’ that I have now learned are stims - such as crossing my fingers and toes.

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

A black and white profile photo of an engineer at work.
A black and white head profile picture of Natalie in a work setting.

I have spent most of my career in the technology sector and am currently an Engineering leader. Despite not being a deeply technical individual, I gravitated towards software engineering roles from the beginning and developed a love of my fellow engineers and how they tend to work and communicate. I have always felt relatively at home in this industry and realised early on that my strengths and passions lay in managing individuals and teams and creating work environments that bring out the best in everyone.

What helps you prevent or cope with moments of overwhelm?

Honestly, very little. I have always suffered from burnout (partly due to how I hyper focus on activities). I have to be very mindful about how much I take on, and tend to leave at least one day at the weekend clear if possible to allow me to rest and recover from the week.


If I am feeling particularly overwhelmed, the only thing that really helps me is to sit or lie alone in a dark and quiet room. I need quiet time to myself to avoid burnout. This can be hard to get as a Mum of an only child.


How have you self-advocated for your needs?


For years, I have advocated for autistic people, but only more recently as a self-advocate. I have learned that this is much harder! When I first realised I was autistic, I experimented with how to communicate that I was to others. I think I probably over-shared (another common autistic trait) initially. I now focus on asking specifically for what I need, or stating what would be most helpful, without necessarily mentioning that it is because I am autistic. This has been more successful.

How does your autistic identity impact your friendships?


Since an early age, I have always gravitated towards other neurodivergent people. The types of people that others would typically find ‘odd’. I tended to find them more authentic and interesting. What I have to be mindful of, particularly at large social gatherings, is that I have time away from people to recharge. This can be difficult in certain settings and I’m conscious that some people may find my need for time away offensive or confusing. Your Past

How did being an undiagnosed autistic child impact your childhood?


Being undiagnosed meant I had to find and figure out coping mechanisms from an early age on my own. In many ways, I think over the years this made me stronger. For example, my sensitivity to noise meant I couldn’t focus or concentrate for tests and exams at school. I remember buying my first pair of ear plugs at about age 11 and religiously wore them during tests and exams and to help me sleep at night from that point on. As a consequence, I consider myself somewhat of an expert in all things ear plug related!

What ways did you camouflage or mask?


I learned to participate in small talk, even though I never really enjoyed it. That doesn’t mean I don’t enjoy talking to people, but I tend to prefer to get into quite meaty topics or topics of interest quite quickly.


Predominantly, the ways in which I masked were simply to bury the feelings of discomfort I was experiencing - the overarching consequence of which was constant burnout.

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

It has made me incredibly proud of what I have been able to achieve because of and in spite of being autistic. To this day, I am not convinced I would have been as successful in my career had I learned I was autistic earlier. I believe I may have allowed it to hold me back.


Talking to Others About Autism

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

I have a set of slides I put together, which are a culmination of over ten years of deep research, my own personal experiences and listening to the experiences of other autistic people. It covers the basics, what people can expect and how they can help.

What do you wish others knew about autism?

I wish more people knew about the autistic experience as shared by autistic people and that most of the stereotypes and myths in mainstream media and resources are misleading at best and incorrect at worst.

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

Read about autism from autistic people. Read articles and books written by autistic people and lurk in social media groups led by and for actually autistic people. This is where I have found the most support and learned about other people’s authentic autistic experiences.

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

One of the most validating books for me when I first learned I was autistic was ‘Unmasking Autism’ by Devon Price. I also particularly enjoyed ‘The Reason I Jump’ by Naoki Higashida when trying to understand my son better.

Are there any resources (books, articles, videos, etc.) you would recommend for people who are exploring if they might be autistic?

There are a number of great autistic advocates on social media platforms. Some of my favourites are ‘Neuroclastic’, ‘Neurodivergent Rebel’ and ‘Autisticality’.

 

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.

コメント


Want to read more on topics that interest you?  
Subscribe to my FUNletter.

What topics interest you

Thanks for submitting!

bottom of page