Am I Autistic without a Formal Diagnosis?

Leanne and her mom after Leanne's graduation from high school

By Leanne Libas

Names have been changed in order to protect their identities.

Hello fellow readers! I’ve received so much positive feedback after releasing my autism story through the Art of Autism. My story has been shared hundreds of times and one those who shared was none other than Amy Poehler’s Smart Girls Facebook page (a popular site that has over 1 million fans).  I was very surprised as I never thought I would gain acclaim with the article. I’ll always enjoy and reminisce about this moment whenever I need a positive pick-me-up yet my work is still not done. After receiving such positive feedback, Debra and I did some talking. She offered me something I couldn’t pass up: writing monthly blogs for the Art of Autism! I can officially say I’m a writer and I’m honored I was able to be given this opportunity. I knew that one day I would be able to share my stories and opinions but I didn’t think it would happen so fast.

In honor of being a new blogger for the Art of Autism, I came up with a list of ideas for blogs that I shared with Debra. It was a difficult decision to choose a topic to write about because I tend to be indecisive. I’m glad that I’m able to write monthly since I’m starting my first semester in college soon. I know my schedule will probably be chaotic. I’ve decided to write about something that has been going on this summer.

Being diagnosed with autism at a young age is not only emotionally crucial but it can also determine the supports a child receives in educational settings. I was fortunate enough to be diagnosed early. At the time of my diagnosis I was already attending special day classes. Unfortunately, some children are not diagnosed around the age of 3 or 4 like I was. For example, John Elder Robison, author of Look Me in The Eye, wasn’t diagnosed with Asperger’s Syndrome until his adulthood. Asperger’s was not been a ‘well-received’ diagnosis when he was a child.

Receiving a diagnosis can be expensive. Depending on your health insurance, you may be referred to an experienced neurologist yet you have to pay a certain amount of money or your insurance may not cover it at all. That’s why there are people out in the world that self-diagnose. They simply may not be able to afford a formal diagnosis. Sometimes stigma gets in the way. There’s a debate in the autism community on self-diagnosing. Some state that it’s not verifiable since they were not properly diagnosed. Those people question the veracity of the diagnosis. Others feel it doesn’t matter as long as the person is true to oneself. My philosophy: Give everyone a chance to prove what they’re capable of.

During my final IEP meeting my former speech therapist, Mrs. Marquez, advised me to make sure I keep a record of my diagnosis with the college’s disability services office.

“Leanne I want you to have disability services. Even though you feel you don’t need any more accommodations you still have to be careful. You never know what can happen,” she said.

Hearing those words made me realize I’m going to be on my own when it comes to disability services. My search for my original diagnosis began.

In my experience of discovering my diagnosis, I never saw an official form explicitly stating  I was autistic. The only way I found out was through reading my own IEP forms. Apparently, the IEP is not sufficient when attempting to receive disability services in college.

Mom requested my paperwork in the Spring before college began from Dr. T. at Children’s Hospital of Orange County (CHOC). By summer, I was getting anxious when the paperwork had not arrived.

A week or two after graduating from high school, I discovered I was one of the finalists for the Organization for Autism Research scholarship (an autistic-specific scholarship). In order to move on through the process I needed proof of my formal diagnosis. I assumed the paperwork from my pediatrician would be adequate. Unfortunately, it wasn’t considered an “official” diagnosis. Instead I received a letter stating that I need to have testing (i.e. metabolic screen, MRI) from Dr. T from CHOC and additional paperwork from the local SELPA.

As the summer progressed and I hadn’t received the paperwork, I became more and more apprehensive. It took four requests to CHOC to get the paperwork. Finally, the day before the deadline for the scholarship, I received an email stating that I can access my paperwork through a verified sharing network. As I got access to my paperwork online, I was excited and nervous to see how I was diagnosed. After reading the paperwork, I was dismayed to discover it was the same paperwork I already had from my pediatrician except there were more referrals for testing.  I felt deflated.

I emailed the paperwork to the scholarship coordinator knowing I wouldn’t qualify. I was angry because I worked so hard for this scholarship. I had to turn my efforts to scholarships tailored to my specific needs and interests rather than applying for national scholarships.

Even though this was heartbreaking, I knew I had to move on.  Obtaining a diagnosis again would make life so much easier. I could receive accommodations at school and have a chance at receiving scholarships.

Leanne and her mom after Leanne's graduation from high school
Leanne and her mom after Leanne’s graduation from high school

After the whole ordeal, I contacted my pediatrician, Dr. Dennis, and received some referrals. Mom and I ending choosing a neurologist named Dr. Chen, whose office was conveniently close to home.  On the day of my appointment, I was nervous because I didn’t know what to expect. I knew I needed to look not only on the bright side but also on the negative side.

Throughout the appointment, I felt at ease as Dr. Chen talked to Mom and me. She explained to us that I’m doing well and told us that Dr. T died 6 years ago. I was deeply saddened by this because after the scholarship disaster I was kind of upset at Dr. T. I didn’t know any better. Because of the fact that I was intervened immediately after my diagnosis, Dr Chen was not able to provide me with a DSM-V diagnosis. Fortunately, I’m still able to have IQ and skills testing and educational goal planning. Also, they will put an EEG monitor while I sleep in order to determine whether I’m prone to seizures in the nighttime.

From my perspective, the appointment went well. The only concern I have is the referrals. Since we changed our health insurance provider awhile ago, some of the referrals may not be able to provide my services.

Going through this process is so much work but I feel that it will be worth it in the end. It feels as if my mom is going through the same process of me being diagnosed 14 years ago. I believe that a higher power is making me go through this situation in the essence of learning a lesson. Looking back at what I’m currently going through, I shouldn’t blame anyone. Things happen for a reason and you have the power to either solve it or let it get to you.

This is something that I have to do for myself. I’m not trying to please people but rather I’m trying to satisfy myself. I don’t want to go through the same situation I went through this summer. Honestly, I’m still a little fearful and I have every right to be so. What happens if everything doesn’t work out? Am I still autistic without a formal diagnosis?  Will this change who I am as a person? I don’t know. All I can do is stay positive throughout this situation even though I want to be negative.

To end this blog, here’s a question: is being properly diagnosed really worth all the trouble? My answer: Yes. Going through the struggle of receiving a diagnosis makes you more appreciative and you will be able to receive accommodations.

My advice for those who are having some issues getting a diagnosis and are facing stigma from doctors: Fight on!

Editor’s note: Leanne Libas wrote the most popular blog for The Art of Autism a couple months ago about accepting her autism diagnosis. The Organization for Autism Research scholarships attracted 511 total applicants. The 35 awards they gave out this year totaled $105,000.




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