Last updated on November 26, 2023
Podcast Episode 0064; Season 04, Episode 28; May 18, 2021
Our daughters and I have had a fair number of neuropsych assessments. The girls both have a list of official diagnostic labels. The three of us have ADHD in common. On her ninth birthday, we began yet another neuro-psychological assessment for Leigh, our eldest daughter. There’s always another assessment, it seems.
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Hello, and welcome to The Autistic Me Podcast. I am Christopher Scott Wyatt, speaking as The Autistic Me.
On her ninth birthday, we began yet another neuro-psychological assessment for Leigh, our eldest daughter. We had a video call with the psychiatrist overseeing the process in the morning. I spent most of that evening and the next two days completing the assessment questionnaires.
The packets included the ASRS, the BASC-3, the Brown ADD Scales, and various others. It’s a hodge-podge of acronyms brought to you by companies with ominous names like PsychCorp and Multi-Health. Any Babylon 5 fans might recognize the Psi Corp similarities.
The behavior inventories offer statements, such as “I get bored easily” or “I plan well.” The patient or guardian then selects the best answer.
Some instruments use yes/no statements, while others are presented as Likert-scale inventories with 0 for never and 5 for always. Then, Leigh had to complete self-evaluations and open-ended questions… which means I marked her answers and wrote her responses in 15-minute chunks of time.
One booklet had 175 statements. Another had more than 180. This was not an easy process. And then we reached the open-ended responses.
In response to many of the statements, Leigh rightfully asked, “What does that mean?” She would finally offer “I don’t know.” Because we’ve been at home for more than a year she replied to several statements with “I don’t have any friends. How do I know what other kids are doing?”
Any assessment for social and academic skills runs right into the coronavirus pandemic. The best I could do for the parent forms is think back more than a year and mark what I could.
Leigh has had mental health assessments every two to three years. Her sister, Anne, had assessments in the past, too.
There will always be another assessment. There will be changes in medical science and in mental health. The psychiatrists likely will revise the Diagnostic and Statistical Manual of Mental Disorders (DSM) at least once as the girls become young women. Labels will change and treatments will change.
Assessment. What does it even mean to assess the neurodiverse?
I only vaguely remember the assessments of my childhood, including the assessments for the gifted and talented program in elementary school. Gifted. That’s a complicated label.
Schools perform basic assessments, and often grudgingly. Gifted? Those students are worth a test or two. Autistic? Learning disabilities? Schools might not want to identify those children. Labels come with a price.
Yes, I’m cynical when it comes to school-provided assessments. In 2019, California’s Legislative Analyst Office estimated that special education students cost three times the “average” student to educate. Between 12 and 15 percent of public education students receive some special education supports nationally.
Parents who have the financial means often obtain independent assessments to force schools into compliance with state and federal regulations. Every child is guaranteed a free and appropriate public education under federal law. That doesn’t always happen.
My parents could never have afforded assessments of any kind. I’m not sure anything would have been available or appropriate, regardless.
Susan and I, fortunately, have good insurance, which is covering the costs for Leigh’s assessment. We’ll have the results when we meet with her IEP/504 Plan team at the elementary school.
A comprehensive assessment can cost $3000 or more today.
Susan and I are seeking this assessment for Leigh because she needs it. This isn’t about chasing a label — I don’t care what labels are used. Leigh is struggling and she needs our help to thrive.
Screening for attention deficit, learning disabilities, or autism takes hours, even days. The test instruments are expensive, with publishers charging significant fees for the booklets. Scoring and interpreting results takes time, too.
I hate assessments. They take time, cause stress, and change how teachers and administrators treat a student. I know firsthand how radically things changed once I was “gifted” and not merely a disruptive troublemaker.
Labels from the ancient past are meaningless. I’m not confident about the labels our daughters have or will receive.
My labels changed. They “evolved” is supposedly the polite word for it.
The DSM-II, even the 1974 revision, might as well have been written by monks during the Dark Ages. The DSM-III appeared in 1980 and that edition was revised in 1987. The DSM-IV lingered around from 1994 until 2013, with a “revised edition” in 2000.
I was assessed for ADHD in the late 90s, autism in 2007, and there were a few neurological screenings between those assessments. There was an additional neurological screening after the autism assessment.
Susan endured my journey through various diagnoses, mistaken medications, and bad therapists. At least the autism diagnosis clarified why little else worked to change me or to improve my life.
We need to better know what our daughters’ needs are — especially now before they are preteens and teenagers. Whatever doubts I have about mental health labels and treatments, information helps.
After every assessment, theirs and mine, weeks pass before the results are presented. We won’t have the results of Leigh’s new assessment until mid to late June.
Leigh’s current labels include Post-Traumatic Stress Disorder; Reactive Attachment Disorder; RAD with Disinhibited Social Engagement Disorder, child neglect and abuse; and Attention-Deficit/Hyperactivity Disorder.
Anne has similar diagnoses, with the additions of Childhood Adjustment Disorder and Childhood Depression. I’m not sure how “childhood” changes the diagnoses. One therapist suggested these might be outgrown someday, but that seems strange to me. At best, we learn to cope with our childhood traumas.
Leigh and Anne were our foster children from late 2015 until mid-2019. Despite their young ages when they arrived at our home, their early experiences and being foster children led to early trauma.
People assume that everything must have been great since the girls were with us, and only us, after being placed.
Imagine being uncertain, week after week. Your birth parents probably tell you everyone will be together again. Your foster parents are the ones caring for you and meeting your needs.
Now, how do we separate the trauma and anxiety from their experiences from ADHD or autism? The observable behaviors of various conditions overlap in the DSM. There’s no brain scan that gives a perfect diagnosis. Parents like Susan and I turn to experts and hope the labels applied to our children lead to the best treatments.
ADHD is a medical condition, not a behavioral problem. It’s a neurological difference that sometimes can be treated with medications. Some autistic self-advocates tell me that we’re wrong to use medication for ADHD. These advocates argue ADHD represents diversity, not disability.
The brain is a physical organ of the body. The divide between mental health and physical health is an artificial one that contributes to debates and misunderstandings.
It’s no accident that once a condition has an identifiable physically testable cause that the powers-that-be remove the condition from the DSM. When the genetic cause of Rett Syndrome was identified, the APA removed Rett from within the autism spectrum. Rett is now considered a “medical” diagnosis, not a set of autistic behaviors.
The DSM’s absurdity is that a medical condition might cause behaviors, but then it is no longer a mental health condition.
To be a mental health condition, the etiology (the cause) must remain unknown. This gives the mental health diagnosticians a mystical power to read their holy scripture and decree that an individual has a mental disorder.
My dark and cynical view aside, there’s no question that some mental health conditions can be successfully treated with medical interventions. That’s why psychiatrists are medical doctors and I wish more were neurologists as well.
I’m not eager to medicate a child. Susan knows I’d rather not use any medications for myself, either. But, Leigh wants to do things and cannot focus. She does not sleep well. She’s anxious. She is unhappy with herself.
The brain, as an organ, has physical differences that become disabilities in some situations. In those circumstances, a physical or chemical treatment might offer relief of the symptoms.
I treat my diabetes, anemia, and cholesterol with medications. I have used medications to reduce migraines, seizures, and ADHD.
If the assessment determines it is most likely ADHD causing focus challenges, then we will continue to try medications and relaxation techniques. If the assessment suggests other causes for Leigh’s struggles, then we’ll evaluate what might best meet her needs.
An autistic colleague asked if I’ll be relieved to have an autism diagnosis for Leigh.
No. I won’t be relieved… I’ll be better informed. We will discuss whatever we learn with Leigh in language we hope she understands, too. She has a right to any information that might help her with self-care.
Over time, I learned strategies that have eliminated the need for ADHD medications. I actively make choices that avoid migraine triggers. I exercise to reduce the symptoms of diabetes. Information about my body and my mind helps me take care of myself.
Ideally, Leigh will use what she learns to meet her physical and emotional needs in healthy and positive ways.
As Anne gets older we will want more information about her needs, too.
The labels are whatever they are.
We need to know why occupational and physical therapy haven’t helped Leigh with proprioception. Why does she trip over herself? Why does she walk into walls and doors? Her poor body is covered in bruises just from walking inside our house. Why does she struggle with utensils when eating? Why does she get confused by new words or phrases?
Yes, I see what might be autistic traits. But what if the traits are from neglect? What if they are part of ADHD, PTSD, or something else?
With the pandemic, we’ve had to wait a year before moving forward with an assessment. During this year, we’ve observed the girls every waking hour of the day. Being at home together, we better understand how difficult some tasks and activities are for Leigh and Anne.
We love the girls. Watching them struggle and be unhappy upsets me.
Hopefully, we’ll have some answers in June. Until then, I’ll do what I do best and worry about how to help the girls be their best selves.
I am Christopher Scott Wyatt, speaking as The Autistic Me, a label assigned by neuropsychologists who were using the DSM-IV-TR.
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