Autism and Late Diagnosis

This is a particularly difficult post to write.  Many children exhibit obvious behavioral patterns that point to a diagnosis of Autism.  Some of these behaviors include stimming, hyperfocus on objects or subjects, and severe language delays including nonverbal problems.  Other children, like our daughter, do not display these behaviors and still face huge challenges in social interaction and learning. Sometimes a diagnosis comes late, and certain behaviors have become rigid structures by which a child has learned to survive challenging situations

In our case, we did not receive the Autism Spectrum Diagnosis until our daughter was 10 years old and in the 5th grade, despite the fact that my husband, Greg, a licensed professional counselor, had been saying for at least 2 years that something wasn’t right and that ADHD didn’t quite fit her.  The benefits of prescribed ADHD medication never lasted more than 90 days without requiring a change (usually an increase in dosage), and some behaviors were actually magnified because of the medication.

When we first requested that Curly be assessed for ADHD, our pediatrician’s office at the time told us that he did not believe in ADHD because it was a discipline/behavioral issue.  This did NOT sit well with my husband, who was clinically trained to diagnose and counsel for ADHD issues, and it did not sit well with me either!

We changed pediatricians.

We had Curly assessed at school, because as her mom, I began to see patterns emerging with every subsequent school year.  She would start out on a high note – all A’s, loving school, making friends, etc., – and then around the 12 week mark, we would see a dramatic drop in her grades, in her motivation, in her ability to stay organized with her assignments, and with her ability to transition from school to home.

She would have screaming  meltdowns when she would come home from school – which at first appeared to have no reason to me – and which shot my stress level right up there around my-head-is-going-to-explode.  She began being more aggressive with her sister and brother, began destroying small items that belonged to other people, and became argumentative over ev.ery.thing.  All. The. Time.  She could scream and throw a fit for a good hour without stopping, and then it would shut off and she would be tired and sometimes could not even remember what she was so upset about.

If you knew our girl when she was young – 3 or 4 or 5 – you probably cannot imagine her being like this.

I was afraid that her ADHD meds were making her worse.  There were some meds that caused serious side effects that were scary, and we would have to stop that med and try to find another.  We purposed to avoid all of the amphetamine-based ADHD medications due to family history of addiction and because we just didn’t want to go there.  I always felt that I was screwing her up because I couldn’t show more Grace and less anxiety.  That maybe I was not disciplining her effectively, and that was the cause of these problems.

But finally, during the 5th grade, after Curly had seen her own counselor for a few months – we got a referral to a psychologist.  Rather than her behaviors improving with counseling and medication, they were growing worse.  And she was getting bigger and harder to manage.  The psychologist interviewed us and Curly several times.  He performed a QEEG which reviews brain wave activity.  We even had a medical EEG done because there was a concern about possible Absence Seizure (more like a “space out” than a convulsive seizure).  She could NOT tolerate the EEG in the hospital and we had to leave before it was completed because she didn’t like the sensors, the flashing lights, or the sounds of the  machine.

When the psychologist reviewed the QEEG, he showed us that Curly’s brain waves looked NOTHING like an ADHD child.  WHAT!?!  She showed NO typical patterns for ADHD, and other than disorganization and trouble staying on task, he began to tell us that he felt like ADHD was NOT the culprit.  That’s when my husband suggested we consider Autism Spectrum Disorder.

This opened a whole new conversation and realm of questionnaires, assessments, and feedback from teachers.  We reviewed her developmental history and things started to stand out that ALSO fit into the ASD diagnosis (one primary one being constipation…)  While teachers at school could not believe we were even looking at ASD (she is SO WELL BEHAVED at school), the more we worked with the psychologist, the more the pieces began to fit together.  She came off her ADHD meds, which caused some interesting situations, but the more he worked with her and began using biofeedback, the more I saw some of that sunshine come back in our girl.

A puzzle piece is the sort of symbol for Autism Awareness, and I felt like we had dumped out a box of puzzle pieces and were trying to put it together – only there were no corners – it was a round puzzle.  And she was my daughter.

Getting the Autism diagnosis was only the first step.  We have had a long way to come and we are still working on putting support in place for her – and for our family – and for awhile I have felt like we were “behind the 8 ball” so to speak.

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