Bloggy Moms

Saturday, October 3, 2015

An Additional Diagnosis: Our Journey to Autism

Yesterday my daughter had an appointment that really took us five years to get. At first I was a little bit angry that it took so long to get her diagnosed with autism, but then I took a look back and saw all of the pieces of the puzzle. Everything fit into place perfectly.
When Princess was four, she started having a lot of problems in preschool. At that time my husband and I saw a family counselor who said that our daughter probably had ADHD, but it was too early to tell. Then in kindergarten when my child was suspended twice in less than a month, a  different family therapist encouraged us to see our pediatrician to get an ADHD diagnosis so that we could get her on a 504 plan to stop the suspensions. We also used it to put some supports in place. A few months later, we saw a clinical psychologist who took a family history and performed a battery of tests. His conclusion was that my child had severe ADHD with possible bipolar disorder. He ruled out asperger's because she could read emotions. Over time we added the diagnoses of Oppositional Defiant Disorder, Sensory Processing Disorder and OCD to the mix. Then when Princess turned nine her current psychiatrist said that she saw some traits of autism so she added PDD-NOS.  Finally in May of this year this same doctor said that she thought that all of my daughter's diagnoses could fall under the umbrellas of bipolar and autism.
That really struck me because for a very long time I was wishing that we could just say that my daughter had XYZ which explained everything. I just wanted one diagnosis to cover it all. This new co diagnosis was a step in the right direction.
All of this time, we were limited to what resources my daughter received, We were blessed to have her in a therapeutic day school, with a private therapist and with a fantastic psychiatrist. I still felt that she needed more. At one time our school district encouraged me to call our local regional center for more services. In not so many words, I was told they only worked with developmental delays. Since my daughter was not diagnosed with autism at the time, they refused to talk to me.
I eventually started to connect with the autism community because so many of my daughter's behaviors sounded so similar to their children's.
In January of this year, our long time family therapist moved her practice out of the area. Since my daughter seemed to be doing well with the supports at school, we did not get a new private therapist right away. In July and August of this year, we saw some new behaviors that warranted us finding that new therapist. She's been amazing! During the interview process I mentioned that we wanted to seek out a more formal autism diagnosis for our daughter so we could get her more services. The problem that I had was that I had no idea who was a good neurologist. We also needed one who would accept our insurance. I can't help but believe that divine intervention was at play when she gave us the names of several who she knew of.
The following Monday I called all of them. One of them seemed like they might work until I found out that we would have to pay out of pocket and get reimbursed by our insurance. I emailed the therapist who encouraged me to try calling again. It turned out that two of the numbers that I had were mixed up. I was finally able to contact a pediatric neurologist who took my insurance and who had an opening less than a month away. I was beside myself with joy as we were getting closer to real answers.
The receptionist aka Johnny on the Spot, sent me links to the paperwork that I would need to fill out. It was quite lengthy, but I was happy that it was so thorough. I filled it out and sent it back with other reports that I had. I will say this doctor had a lot of reading material.
After waiting for time to crawl by, the day of our appointment finally arrived. I was nervous and giddy at the same time.
When we arrived there, the receptionist recognized us right away. I was surprised that she knew who my daughter was because I hadn't sent in any pictures of her. Then it struck me, she was the only girl in the office. Getting her a diagnosis had been a concern of mine because she is a girl. It is harder to diagnose girls. I was ready though. In my arsenal, I mean tote bag, I had some articles about girls on the spectrum at the ready just in case.
A few minutes after we checked in, the sweetest lady introduced herself to me as the doctor. She was not wearing a lab coat and did not look scary. A tactic that works to her advantage. She informed me that I could go back to her office to talk while my daughter stayed and played in the lobby. I was a bit concerned at first because my daughter doesn't usually play well with others. I quickly realized that her office door would be open and the receptionists would be keeping an eye on things.
Right away this doctor put me at ease. She assured me that she had read over everything that I had sent. Then she asked me what I was hoping to achieve and how she could help me. She had a check list that she was using as a guide to inquire more about my child. She would ask a question then I would answer mostly in the affirmative and with an anecdote when I could.
At the end of this friendly banter, she told me that she had been looking on the DSM-V to see if  my daughter met the criteria for an autism diagnosis. She felt that she did indeed meet the criteria. She also told me that with the DSM-IV it was harder for a person to get the autism diagnosis. I breathed a sigh of relief.
We chatted a bit more about services and where to get them. She included on her prescription OT, feeding therapy (as my daughter has a lot of food challenges) and ABA therapy. She told me that she wouldn't touch my daughter's medications "with a ten foot pole" because she respects psychiatrists. She also knows how hard we have worked to get my daughter to a place of stability.
Then she brought my daughter back to evaluate her and confirm what she already knew. She told me that she definitely saw the sensory issues during the exam.
One of the things that she told me was that for my child she saw her bipolar and autism as the main diagnoses. All of the rest of her diagnoses fell under those umbrellas. Wow! She felt the same way that the psychiatrist did. I didn't even need to show her the articles in my tote bag.
We go back to see her in a few months to see how my daughter is progressing.
It's been quite the journey to get to where we are, but I can see now that it was perfect timing.

You can follow our journey here on  Facebook as well.


  1. YAY! YAY! YAY! YAY! YAY! from your Face Book friend, Darlene Debty Kimsey. Lefty is my daughter's nickname.

    1. Thanks for your support! It means a lot to me. ~Cate

  2. Replies
    1. Thanks. I'm doing well. It is more of a relief than anything. :)