Being Autistic

I’ve always been a bit weird. Over the years some people have called it “eccentric”, “unique”, or in the words of my parents: “you’re a strange girl!” The weirdness was there in my earliest memories and took various forms.

I had a balance issue when I was a pre-schooler and would fall over and knock myself unconscious. I had a brain scan which showed some “abnormality” but it was never specified and I eventually grew out of it.

I was very active. Always running around, cartwheels for hours in the backyard, playing every sport that was available to me. My mother would exclaim “stand still!” when she was talking to me. I was unable to participate in the “sit down” hobbies that my sisters did, like knitting and latch-hooking. I just needed to move ALL the time.

In primary school I was identified as very intelligent, and I was placed in the “Gifted Program”. The only thing I remember about that was doing unusual math problems and playing Dungeons and Dragons. Later on in Primary School, I began to develop constant headaches. I was taken to a paediatrician and told I was a “worrier” (in other words: anxious). All the while, I continued to excel academically but was socially awkward.

You might say that all young adults are socially awkward, but for me it was more confusing. I remember turning up for the beginning of the year in high school and it seemed that everyone had changed. Girls were acting differently, hanging out in groups, enjoying activities that I wasn’t interested in. I tried to fit in the best I could by mimicking their hair, their conversations, and their interests but I always felt out of place and confused.

My social group consisted of my sisters and my cousins. I was constantly teased about being “gullible” and they would play tricks on me to get me to believe things and then laugh about it. My parents were always telling me I had no “tact” and I learned that I should not say what I think in order to be liked socially. Don’t get me wrong, I had a loving and happy childhood. My parents and siblings were not cruel to me, but I think they just didn’t know what to make of me sometimes.  I was just weird.

I grew up sharing a room with one of my older sisters. We got on well and neither of us ever thought that the other had strange behaviours because we BOTH acted in strange ways. . It turns out that she is also Autistic (but more about that later).

 

After a lifetime of feeling different and being confused by the world in general, I reached a pivotal moment just before I turned 50.

I always had a particular perception of what an Autistic person looks like. Even though I’d majored in Psychology at University, my stereotype had been informed by the media and popular culture (think Rain Man, Mercury Rising, and What’s eating Gilbert Grape). I couldn’t relate to the male characters being portrayed, so I never considered myself in that category. That was until I watched “You can’t ask that”, an ABC documentary series that covers various minority group experiences.

The episode I watched (made in 2020)  was about people on the Autism Spectrum. If you haven’t seen the show before, participants are presented with a series of questions from the general public. They are written on cards, they read them aloud, and then answer them. The point of the show is to ask questions that you would never ask to a person’s face because it would be rude and offensive. Coincidentally, asking inappropriate questions is one of my Autistic traits, but I digress. There were a wide variety of Autistic people on the show: men and women, young and old. From the first answers, I was immediately struck by how similar my own responses would be to those same questions. I found myself nodding and thinking “yes! That’s me!”. It was the first time I had considered that I might be Autistic.

Around the same time, I had been struggling more than usual with my anxiety. I’d been diagnosed some years before with Generalised Anxiety Disorder but not really given any strategies (besides medication) to cope when things got bad. During this particularly anxious time, I had pretty much shut down from life. I found it difficult to be around people and even talking was an effort. I just wanted to be on my own. I decided that I needed more help, so I began seeing a new local psychologist.

Not long into our first session, he commented that my experiences and challenges sounded like those of an “Aspie” (short for Asperger’s Syndrome). I talked about how I had recently been considering that might be at the root of my issues, so he began a series of tests on me. The results pointed overwhelmingly to an Autism diagnosis. I was stunned.

My first response was a bit of disbelief. Surely I could not be Autistic? Wouldn’t someone have picked this up before now? My next feelings were of relief. Finally! I understand why I am the way I am. Everything in my life started to make sense. It was a revelation.

Side note:

Shortly after, I emailed my sister with news of my preliminary diagnosis. We share many of the same personality traits, but she had suffered with depression for years and I wondered if she should ask her psychologist about ASD too. We talked on the phone about it and I explained how I had arrived at this point and there were many similarities with her. She did end up pursuing this, and was eventually diagnosed with ASD too. It’s a good example of recognising ASD in others once you know you have it yourself, plus Autism can be genetic so it never hurts to check!

 

I decided to pursue a formal diagnosis. I felt like it was important to my sense of identity, and could provide me with the tools I needed to better cope with life.

I did some research with some assistance from Autism Connect and Autism Tasmania. I found a wonderful Psychology practice in my former home town of Adelaide. They were specialists in ASD, and had a few clinicians on staff with a particular interest in adult women with ASD. I got an appointment for an assessment and began the journey to a diagnosis.

Because I live remotely, the assessment was all done online via video conference. It ran over several hours in two sessions and consisted of interviews, questionnaires, video scenarios, and a lot of recounting of my childhood. There were two Psychologists present, with one of them with a PhD in ASD in older women. She was very knowledgeable on the subject and helped me to not feel so embarrassed when I was giving my very honest answers to their questions. After 50 years of “masking”, it was difficult to really just be me, but I knew it was important for an accurate assessment.

Some weeks later, the report was issued and the result was in: I am Autistic.

So what now?

 

 

I often think about what difference it would have made in my life if I had been diagnosed as a child. Back in the 70s and 80s (when I was growing up), Autism was thought of as an exclusively male condition. It was not commonly diagnosed in girls. In my case, I was deemed to be highly intelligent, but diagnosed with anxiety. How would my life be different if I had the correct diagnosis in my formative years?

I’m in two minds about it. On the one hand, I feel like my years of struggle and needless energy expenditure were a great shame. I feel ripped off that I wasn’t given the understanding, the tools, and the allowances to be myself. I wouldn’t have felt that something was wrong with me, instead I would have accepted that I’m just in a world that isn’t really designed for me. I’m sure I’ve missed out on opportunities because of my disability.

On the other hand, would I have been labelled and discriminated against? Would there be a misconception that I’m not capable? Would I have grown the way I have, striving to fit in by necessity and pushing myself to survive? I’ll never know.

Moving forward, I’ve become more accepting and comfortable about who I really am. There was and still is  a period of “coming out”. Most people in my life (including me at one point!) were unaware that I was clinically different. If I have one superpower, I’d say that it’s next-level, expert “masking”. I’ve been practicing for 50 years to appear normal. I’ve perfected eye contact, scripted conversation, mannerisms, even facial expressions. There are very few people I drop the mask with and of course those were the same people who reacted with “well of course you are!” when I told them about my diagnosis.

For other people in my life, my diagnosis has come as a surprise. I’ve had responses like: “You’re not Autistic!”, “You look normal to me”, and even “are you sure?”  I take this as proof of my highly skilled masking, but those responses can still annoy me at times. I didn’t just catch Autism, I was born this way. I’ve always been Autistic. After years of struggle and an extensive assessment process, you can be sure I’m sure! When people respond in those ways it feels dismissive, like I don’t deserve consideration or, even worse, I’m inventing it. Sometimes people say “oh, you can’t be Autistic because you’re so successful”. I don’t believe that those two things are mutually exclusive.

They say if you’ve met one Autistic person, then you’ve met one Autistic person. We’re all different, with different levels of language, communication, and different co morbidities. My sister and I are a great example. She would describe herself as shy, she is sensitive to noise, she’s not hyperactive, but she suffers from depression. Me? I’m not shy, sound doesn’t bother me but light does, I have never had depression but anxiety has plagued me my whole life. Yet, we are BOTH Autistic. As we like to call it: “Autistic AF”.

 

 

Recognising my ASD has allowed me to be the architect of my life. One of my weaknesses is in social interactions. I’ve had jobs in the past where I’ve had to deal with people face-to-face on a daily basis. I can do it, I can even do it well, but it takes a toll on my mental and physical health. Emails are OK, but face-to-face and phone conversations are difficult for me. Acknowledging this has led me to seek occupations where I don’t come into direct contact with people. I’ve created a business that really plays to all of my Autistic strengths.

These days I formulate and produce perfumes from home and sell them online.  It’s perfect for me and brings to the fore my skills in: science, organisation, and strategic thinking. It also takes advantage of my heightened sense of smell while enabling me to control my environment, especially the lighting, and be physically active too.

 

 

I think there is a misconception that Autistic people are not as capable as neurotypical people. This is just not true. We’re just different and it’s not a bad thing. I believe that if we can create a situation that plays to our unique strengths and eliminates conditions that cause us problems, then we can thrive and succeed. I’m proof of this!

If you’re struggling with life, don’t be afraid to ask for professional help. Maybe you recognise yourself in some of my experiences, but bear in mind that it doesn’t mean that you are Autistic. There is a lot more to my diagnosis that I haven’t detailed here. In other words: social anxiety alone is not Autism, but there is help available for that too if you need it.

If you’ve made it this far, thank you! It is my hope that by having an open discussion about Autism and sharing our personal experiences, we can help to eliminate the stigma associated with it. I hope that it has also given you a greater understanding of Autistic people and has encouraged you to explore and educate yourself on this topic.

Now go forth and celebrate weirdness, because it’s OK to be different. Wouldn’t life be boring if we were all the same?

 

(If you’re interested in discovering more about Autism, particularly in women, I recommend having a read of Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age )