She Is Not a Duck, Part 8

A Mother’s Journey into the world of Mental Health and Spectrum Disorder Challenges

She walks like a duck, talks like a duck, but she is not a duck.

Chapter 7 Meet Autism Spectrum Disorders

Our psychiatric appointments were vital to Sarah’s progress. The psychiatrist saw her every 3 to 4 weeks to address any prescription needs, as well as to continue to unravel the causes of Sarah’s behaviors.

The information would get updated for her counselor to use as a guide in the behavioral modifications and talk therapy offered. Some approaches were more successful than others. This was the normal course of business as the psychiatric detective, I supposed.

The first order of business was for me to update her team that her school’s new plan was to provide a half-day education for Sarah. Teachers were not able to effectively teach the kids that were there for education, with Sarah’s continued unpredictability. The second half of her day had become a pseudo learning environment at our dining room table.

Further, something interesting had started happening. I knew that it was worthy of relaying to her doctors, but I had no idea the true significance.

Sarah’s preferred ‘playmates’ list was getting younger.

As her peer group of girls was starting to mature in their socialization, their activities, and pre-teen girl mannerisms, Sarah was not. It wasn’t a conscious decision on her part, she simply gravitated to the girls that enjoyed the same things.

Dolls, coloring, puppies, candy, and all normal little girl things were still in her scope of pleasure.

She was rigid and staunch, with no care that others were moving on in their age-appropriate desires. Her eruptions, when the play was disrupted, were still present.

She was showing no signs of leaving Peter Pan Land. Quite the opposite.

I mentioned to her psych team that her 12th birthday party invite list was composed of all younger girls, mostly 10 years old. She was pulling away from her own group of friends she had grown up with, or maybe they were pulling away from her.

They had grown emotionally, but she seemed to be stagnating.

I wanted to know if this was part of her ADHD or Depression/Anxiety.

For me, I was conversing as a curious and concerned Mom.

To the doctors, the red flags they suspected had started waving with vigor.

More forms and more testing with questionnaires to everyone involved in Sarah’s life were dispatched. Head and brain trauma had been ruled out with negative results from recent examinations, such as CT scan, EEG, and MRI testing.

After much ado, the results were in. Of course, it wasn’t clear cut because nothing ever had been to date anyway.

High functioning Asperger’s was discussed at great length. The diagnosis evolved to PDD NOS (Pervasive Developmental Delay). I learned that NOS means a lot. Right then, it just meant “Not otherwise specified” indicating that ALL the criteria for a diagnosis of Asperger's were not met. When a patient exhibits a portion, but not all, of Asperger’s Syndrome characteristics, the diagnosis may be PDD NOS.

This would come to mean a lot more down the road. A lot more.

This was exhausting, but relieving, to have been given a new focus.

Answers are good, right? Sort of.

Sarah was done with being poked, prodded, and grilled with questions. Unfortunately, she overheard me plead with the doctor to give her a break because I felt she was feeling like a lab rat. My words.

Sarah latched onto that expression and used it for years to come as her way to discourage testing. “I am NOT a lab rat. I won’t do it.”

I was better equipped to start tackling and addressing what needed to be done once I knew what we were dealing with in defining her challenges.

“Let’s do this now. We have some sense of a direction and some more answers.”

I felt re-energized and ready.

I was not.

Asperger’s syndrome

According to healthline.com:

Asperger’s syndrome (AS) is one of a group of neurological disorders known as autism spectrum disorders (ASDs). AS is considered to be on the mild end of the spectrum. People with AS exhibit three primary symptoms:

having difficulty with social interaction

engaging in repetitive behavior

standing firm on what they think

focusing on rules and routines

Some people with ASDs are classified as high-functioning. High-functioning autism means that these individuals don’t have delayed language skills and cognitive development that is typical of many people with ASDs.

PDD-NOS

According to Autism Speaks:

PDD NOS is characterized by delays in the development of socialization and communication skills.

“This category should be used when there is severe and pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal or nonverbal communication skills or with the presence of stereotyped behavior, interests, and activities, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder.

For example, this category includes “atypical autism” — presentations that do not meet the criteria for Autistic Disorder because of late age at onset, atypical symptomatology, or subthreshold symptomatology, or all of these.”

More helpful, perhaps, are studies suggesting that persons with PDD-NOS can be placed in one of three very different subgroups:

A high-functioning group (around 25 percent) whose symptoms largely overlap with that of Asperger syndrome, but who differ in terms of having a lag in language development and mild cognitive impairment. (Asperger syndrome does not generally involve speech delay or cognitive impairment).

A second group (around 25 percent) whose symptoms more closely resemble those of autistic disorder, but do not fully meet all its diagnostic signs and symptoms.

A third group (around 50 percent) who meet all the diagnostic criteria for autistic disorder, but whose stereotypical and repetitive behaviors are noticeably mild.

The therapist immediately set up a plan of weekly intensive cognitive-behavioral therapy. Our step forward is answered with a step back and return to weekly appointments.

Defined by Webmd.com:

Cognitive-behavioral therapy (CBT). It helps your child change their way of thinking, so they can better control their emotions and repetitive behaviors. They’ll be able to get a handle on things like outbursts, meltdowns, and obsessions.

We were all geared up and ready to fully embrace the new plan.

Our hope was palpable. It showed in Sarah as well.

As I drove her to school in the morning, I felt peaceful. She had a pleasant morning. I noticed the outfit she had chosen was pretty, non-thug-like, which meant she was feeling good.

I told her to have a great morning and she was all smiles when she said she was sure she would.

“Bye, Mom!”

I was only ½ mile away from the school when my phone rang.

“Please come and pick up Sarah. She walked through the front doors and drop-kicked a boy who was simply sitting against the lockers. She is suspended effective immediately.”

• Thank you for joining me in the 8th installment of my series. We will travel through the hallways of the psychiatric world, the school system, and our family dynamics. I look forward to sharing more and hope you will see that none of us are alone.

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