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Writer's pictureAutumn Kay

Our Autism Journey

My daughter was officially diagnosed with Autism Spectrum Disorder in October of 2021. However, I knew she was autistic when she was around 2 years old.


My daughter started doing things I found odd for children her age, just subtly. She was a little too hyper, a little too intelligent in weird ways, a little too emotional. All children are emotional. All children are hyper. All children learn in different ways. But, I knew from working with many other children, that my daughter was just a little different. Not to mention, my degree in Psychology... I just knew.


So, Why didn't I get her diagnosed sooner? For a few reasons. I knew that being formally diagnosed with autism would change my daughter's life. I was worried that she just wasn't autistic "enough", and that a diagnoses would harm her more than help her. I also know from my Psychology education background that most studies were done on boys and not girls. Girls actually have a slightly different set of symptoms than boys do.


Girls, as we know, are told by society that they are to be more mature and more calm than boys. This affects all girls at all ages, but especially girls with autism or other disorders, like ADHD/ADD or bipolar disorder. Autistic girls do what's called "masking". It is a well known thing in the autism community all around, but much stronger in girls. As you can imagine by the name, masking is when you put on a mask for others around you. You pay attention to how others are acting, and you force yourself to act that way. Being this is common in autistic girls, they tend to force themselves to hide their symptoms.


So, I was worried that, 1. She wold not be properly diagnosed, and 2. She may be negatively affected by the diagnoses. But I was wrong. It's been very helpful. I was right about one thing, though. She was wrongfully diagnosed by two separate doctors. It took a third doctor, who specifically studied girls with autism, to get the formal diagnoses.


My daughter was diagnosed with ADHD/ADD combined type, and put on multiple trials of medications when she was only 4 years old. Until I fought for her. I knew she wasn't just ADHD/ADD. I knew from my own studies and from working with children. I also knew some of the medications were hurting her. She was only 4 years old when she was first put on an ADHD medication. It made her sick, and she was exhausted all the time. Her doctor at the time refused to listen to me, so I stopped seeing him and sent her somewhere else. This new doctor listened. However, they don't diagnose autism disorders there. So, we had to try someone else. We stayed at the second doctor for a few years, until I was ready to get my daughter diagnosed. When her autism started affecting her at school, that's when I knew we needed to get the formal diagnoses.


We went to see a psychiatrist, who was elderly and old fashioned. She saw my daughter over zoom, not in person. She asked me a few questions. She then told me, that although my daughter checked all autism disorder symptoms except one, she would not diagnose her. This woman said, "She is just extremely ADHD". I laughed in frustration, said, "Okay, thank you", and hung up. So, we went to the third doctor. This one was also a psychiatrist.


We went to the new psychiatrist. She was around my age, just a few years older. So, she had studied and learned the new research showing girls with autism. I had to drive an hour away from my home. I have found over the past few years that there are very minimal mental health resources for children (and, frankly, in general) in the central Texas area. We live about 45 minutes north of Austin. When we saw this psychiatrist, she saw us in person. She asked me questions, observed my daughter, etc. Within about ten minutes into the session, she said, "Absolutely, 100%, without a doubt, she is autistic". I looked at her, and I said, "Thank you, I know she is". Then we went over her medications, changed one, added another, and things have been so much better since. (But not perfect, that's not possible).


Once we got her formally diagnosed, we were able to get more accommodations for her at school. She was already in the 504 program, but we were able to add full Sp.-Ed. accommodations; like extra testing time, breaks during class time, etc.


Before she was diagnosed, we already had her in occupational therapy, mental health therapy, seeing a psychiatrist, and seeing a neurologist. But getting her diagnosed has helped them all figure out her specific needs, as well as understand why she does certain things that she does. It has also helped her health providers decipher specific medications. There are some medications that ADHD and Autism patients share. However, there are some that are specific to autism.


It took us 4 years, switching multiple doctors, arguing with people around us (including family), and me fighting for my daughter to finally get her what she needed. I still have lots to learn. I still need to figure out more resources for her. The journey has just begun, but, we're past the big start.


For those who are struggling with their children or with healthcare providers, please continue to fight for your children. Don't feel bad about switching doctors. You have that right! Don't feel bad about switching your child(ren)s school or daycare. Again, you have that right! Do what is best for your child and your family.



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