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AutismBC Connects: Growing up without a Diagnosis

Mar 9th, 2020

AutismBC Connects with Rebekah Kintzinger, Board of Director, CASDA

I didn’t always know I was autistic. I lived in a particularly small town in a decade when autism was not as forefront a topic as it is today. My parents weren’t exposed to a knowledge of Asperger’s Syndrome, which is what I would later be diagnosed with. No professionals during my school years ever suggested autism as a cause of some of my strengths and challenges in class. Looking back, however, is a lot different, because now I have been exposed to a more inclusive understanding of autism. There is no scenario in which I don’t recognize my younger self as autistic—the traits and signs of autism were there the whole time, and all over the place.

I lined up toys and organized them a lot when playing, and I read only books from specific authors or series. I played a single video game from its inception in 1991 to its current version in 2019, and no other computer game I have played to that extent. I immediately couldn’t stand the sound of specific things, like the sound a vacuum makes or my sister eating her food. The smells of bacon and perfumes agitated me so much that my frustration often confused or upset my family members. I wore the same clothes over and over because it was agonizingly uncomfortable if I didn’t.

I often experienced echolalia as a child, which is repeating words or phrases. It often annoyed my mom because I would repeat something that she said in the car over and over on our way to school in elementary. My mom didn’t understand how pleasing it was for me to repeat the phrases she was saying. My other repetitive behaviours were often redirected because they didn’t fit the function or social situation. I had select topics I was interested in and liked to talk about for a long time. Still, when it came down to other people’s interests, I was not so talkative and eager. I did not look at people in the face all the time, certainly not enough for them—it was regularly mentioned.

 

 

So how did I grow up without a diagnosis? In 1987, when I was taking kindergarten for the second time—because I “wasn’t ready” the first time. There were likely no early intervention programs and little to no screening tools for autism in my community of less than 4,000 pop. My teachers had only a little understanding of the spectrum, and most of what they knew would have fallen under ‘classic autism.’ There is no doubt that my teachers and family members considered me unique, I remember hearing that a lot. I have kept a lot of report cards dating back to elementary school, remarking on behaviours and characteristics that stood out. Still, no one knew enough about the autistic spectrum to connect my traits to it.

Growing up without a proper diagnosis put a lot of stress on me as a child to accomplish alone. I was navigating a domestic, educational, and social life without many skills that came naturally to people around me. It felt like a race to catch up on something else everyone had already learned, I was consistently erroring in. I was continually trying to correct my wrong timing of speech and monitor my awkward body language. I made sure I didn’t continue to use poor word choices. I became aware of all of these things, including my slow processing of jokes, or I didn’t get them at all. These made fitting into a peer group tough. So to cope, very quickly in life as a female on the spectrum (but not knowing), I learned to mimic others, camouflage myself, and fly under other people’s radars. My style of dress seemed to separate me from my peers, so I was often trying to adapt it while staying inside my comfort zone. I just want to say about style, I was not successful in this endeavour, until much later in my twenties, haha.

The challenge of navigating social relationships caused me a lot of anxiety. I started experiencing headaches early in school, and even now when a situation requires too much processing. I also had stomach aches, which I might have been able to attribute to anxiety, looking back. It is a tricky emotion because it manifests in different ways.

 

“I now know that not being able to express and articulate emotions can sometimes be called Alexithymia. It is a subclinical phenomenon that substantially overlaps the autistic spectrum…”

 

My first panic attack happened in my grade 12 English class. I was beginning a presentation that I had over-prepared for. That’s right, I had over-prepared for a ten-minute book presentation on Alice in Wonderland. I had prepared overhead sheets, an intro song, and many pages on what I considered levels of symbolism in the book. The fact that I had done all of this, and not thought twice about it had immediately set me apart from my peers again, but it was nothing new.

Sometime during the song, I started to feel light-headed, and the room felt really bright. I could hear myself talking, but I did not feel like I was in control of my voice. I was disoriented and freaked out so I ran right out of school and hid inside the public library until the day was over. I was terrified and couldn’t speak for hours!

I probably should have told my parents but I did not. It was hard to talk about things that I didn’t understand. I now know that not being able to express and articulate emotions can sometimes be called Alexithymia. It is a subclinical phenomenon that substantially overlaps the autistic spectrum, and around fifty percent of autistic people experience it. My anxiety was real, but it still felt so out of the blue because I had been masking for years and not addressing it. This attack caught me off guard and shook my confidence in public speaking for over two decades later.

 

 

If I had a diagnosis of autism back in my developmental years, I could have been more prepared for an event like this. The fallout from it would have been a lot less impactful on my life and health. This, and reasons like this, are a strong motivator for my advocating today. I advocate for women and girls to get the proper diagnosis they need to access the information and resources that will help them succeed and experience health in their lives.

There are a lot of females on the autistic spectrum who do not have a proper diagnosis. Commonly they are misdiagnosed with a mental illness and being treated with pharmaceuticals they do not need. This is common because the mental health industry is not usually assessing for neurological developmental abilities, and the impacts of being pharmaceutically treated for something you do not have can be tremendous on the health and happiness of a person.

 

“Given more time to get to know who the real me was as a young person, I would have been accepted more than I am now.”

We should address this problem by including more females in studies about autism. Clinicians and Diagnosticians need to become increasingly aware of the differences in the presentation of autism between females and males, so that women and girls aren’t going most of their lives without a diagnosis of autism and missing out on the value of what it could mean to them and the families taking care of them.

Getting a diagnosis so late is hard for my family members to look at me as autistic. My whole life, they have just thought of me as something else. They decided I was different, quirky, easily frustrated, and very rigid. Even though my autism can be plain as day, my family members understand only a pamphlet amount about autism. Given more time to get to know who the real me was as a young person, I would have been accepted more than I am now.

 

 

Advocating for autistic people and their families across Canada is something I can do pretty endlessly at this point in my life. It gives me real happiness and a sense of purpose. I am working with a future-forward organization that focuses on a National Autism Strategy. I want to make sure the future for autism is recognized on a national level, and that the current barriers between the provinces and territories don’t continue to inhibit the successes of the autistic community. Another critical component is that we acknowledge and share all that we know about the autism spectrum with others in our country. There are a lot of people out there who do not know enough about autism, and they want to. If they have access to accurate and timely information, they can then relate to, employ, and engage with the autistic people in their lives. A National Autism Strategy will improve the communication of the autistic community’s needs throughout the country. We need as many voices from the autistic community as we can to build a healthy strategy, because as we say: Nothing About Us, Without Us.

I didn’t always know I was autistic. When I found out I was autistic, my life changed. I needed help from some people to change my life and tell me about autism. I eventually found my actual diagnosis, and I am a much healthier person for it. On my life’s journey, you could say a fork in the road formed, and I took it. I am not someone who doesn’t look back, I look back on my life often, reflecting down that old road. But when I turn around again and keep moving forward, I know I am in the right shoes on the right path in the right direction. There are a lot of people out there who are still trying to find their way, and I want to help them if I can.

 

“We need as many voices from the autistic community as we can to build a healthy strategy, because as we say: Nothing About Us, Without Us.”

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