• Brooke Simtob

My Journey to an Autism Diagnosis

How It All Began

Wow! So much has changed

My journey to getting diagnosed with autism, and now writing a blog about my experience on the spectrum, was definitely a long one. I struggled for years to find this diagnosis that has ultimately helped me get the understanding and support that I need to succeed.

This story begins in early fall of 2010 when I was 11 years old. I was first introduced to what autism is while at a volunteer training for a program working with young kids who have special needs. At this point in the training, we were learning about autism spectrum disorders and how to best connect with the kids who were autistic. I vividly remember the slideshow presentation, a list of symptoms and diagnostic criteria for what autism meant. I was reading through each point, checking them off in my head as each one was applicable to me.

Struggles with making friends, check!

Not understanding non-verbals and tone of voice, check!

Sensory sensitivities, check!

Obsessive interests, check! And the list could go on.

I was beyond anxious and confused at the prospect of having autism. I went straight home after the training and convinced my mom to take me into my psychiatrist to get his opinion on this. I was already on psych meds at this point, but my diagnosis at the time was vague and unclear. Autism seemed like the perfect way to sum up my struggles.

When I met with my psychiatrist, he completely shut down the idea of autism. He said that I was “too talkative” and “I made eye contact”, so I couldn't POSSIBLY have autism. The discussion of autism was then dismissed for another 2 years.

When I was 13 years old, my struggles became much more visible in comparison to the rest of my neurotypical classmates in middle school. I had high anxiety constantly, I was asking lots of questions during classes when it went too fast, I had no friends, and was constantly being bullied. I couldn't understand all of the subtle ways that I was being bullied, but I knew that how I was being treated didn't feel very good.

I was sent to have an official neuropsych evaluation to hopefully help identify and address my struggles in school. That test resulted in an unclear diagnosis of slow processing speed and sensory issues, along with Generalized Anxiety and unspecified depression. With these unclear diagnosis’, and STILL no autism diagnosis, I kept trudging through the fear-driven thing called my life.

I fell into a deep depression after years of being bullied in middle school, but I hid most of it by being rude and snapping at anyone who tried to come close or help me. I acted out at home, after holding it together to be “perfect” while at school. Even still, I had no friends at school because I didn’t know how to make friends; almost every kid in my grade would bully me. I was an anxious, depressed mess.

My life went on like that for another few years. There really seemed like there was no hope for me or my future. I started making plans to kill myself, but I was also so full of anxiety that I never went through with anything.

When I was 17 years old, my life changed forever. I made the scary decision to tell someone about my suicidal thoughts. The person I told thankfully reported me to the social worker, and I ended up leaving camp that night with my parents, who drove me to the closest emergency room. After being there for what seemed like forever but was just 24 hours, I ended up at the nearest mental hospital for stabilization. They put me on so many different medications, to the point that most of that week in the psych hospital is a blur.

Once my parents saw how terrible the psych hospital was for me, they hired an educational consultant. In 48 hours flat, she found me a residential treatment center that would help balance out my meds again. They would also test me for autism, which was what my ed consultant believed I had.

During my 3 month stay at the residential/adventure treatment center, I ended up being diagnosed with Generalized Anxiety Disorder, Persistent Depressive Disorder, and finally, Autism Spectrum Disorder.

This was the beginning of the best, longest, and the most worthwhile journey that I have ever experienced. With my hinted suspicion of being autistic finally validated, I felt so free, like a weight was lifted off my shoulders. Then, my anxiety came crashing in, worrying about what this would mean for me and my future. I made the hard decision with my family to go to a long term therapeutic boarding school. I had no idea what I was getting myself into, but I needed answers to my ever-growing list of questions about my new diagnosis of autism.

There is much more to the story, such as my almost-2-year stay at therapeutic boarding school, but those stories are for another time.

Looking Towards the Future

I used to sometimes wish that I had known about being autistic years ago; it would have helped me get the accommodations I need, and most importantly, helped my loved ones understand me better. I went through a lot of struggles in my pre-treatment years.

Today, I am at the point where I wouldn't go back and change my past. I am proud of the things that I have persevered through; those hard times have made me a stronger, more empathetic person. This is just the beginning of my story; with my new diagnosis, I now have the skills and answers to truly take my life into my own hands.

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