{"id":2266,"date":"2021-05-18T12:00:00","date_gmt":"2021-05-18T17:00:00","guid":{"rendered":"https:\/\/www.tameri.com\/wordpress\/autisticme\/?p=2266"},"modified":"2023-11-26T16:27:28","modified_gmt":"2023-11-26T22:27:28","slug":"podcast-episode-064-theres-always-another-assessment","status":"publish","type":"post","link":"https:\/\/www.tameri.com\/autisticme\/2021\/05\/18\/podcast-episode-064-theres-always-another-assessment\/","title":{"rendered":"Podcast Episode 064 – There’s Always Another Assessment"},"content":{"rendered":"

Podcast Episode\u00a00064; Season 04, Episode 28; May 18, 2021<\/em><\/p>\n

Our daughters and I have had a fair number of\u00a0neuropsych assessments. The girls both have a list of official diagnostic labels.\u00a0The three of us have ADHD in common. On her ninth birthday, we began yet another\u00a0neuro-psychological assessment for Leigh, our eldest daughter. There\u2019s always\u00a0another assessment, it seems.<\/p>\n[iframe\u00a0style=”border: none\u201d\u00a0src=”\/\/html5-player.libsyn.com\/embed\/episode\/id\/19185581\/height\/90\/theme\/custom\/thumbnail\/yes\/direction\/backward\/render-playlist\/no\/custom-color\/336699\/\u201c\u00a0height=”90″ width=”100%” scrolling=”no”\u00a0 allowfullscreen webkitallowfullscreen mozallowfullscreen oallowfullscreen msallowfullscreen]\n

Transcript<\/h3>\n

Hello, and\u00a0welcome to The Autistic Me Podcast<\/strong><\/em>. I am Christopher Scott Wyatt, speaking as\u00a0The Autistic Me<\/strong>.<\/p>\n

On her\u00a0ninth birthday, we began yet another neuro-psychological assessment for Leigh, our\u00a0eldest daughter. We had a video call with the psychiatrist overseeing the\u00a0process in the morning. I spent most of that evening and the next two days\u00a0completing the assessment questionnaires.<\/p>\n

The packets\u00a0included the ASRS, the BASC-3, the Brown ADD Scales, and various others. It\u2019s a\u00a0hodge-podge of acronyms brought to you by companies with ominous names like\u00a0PsychCorp and Multi-Health. Any Babylon 5 fans might recognize the Psi Corp\u00a0similarities.<\/p>\n

The\u00a0behavior inventories offer statements, such as \u201cI get bored easily\u201d or \u201cI plan\u00a0well.\u201d The patient or guardian then selects the best answer.<\/p>\n

Some\u00a0instruments use yes\/no statements, while others are presented as Likert-scale\u00a0inventories with 0 for never and 5 for always. Then, Leigh had to complete\u00a0self-evaluations and open-ended questions\u2026 which means I marked her answers and\u00a0wrote her responses in 15-minute chunks of time.<\/p>\n

One booklet\u00a0had 175 statements. Another had more than 180. This was not an easy process.\u00a0And then we reached the open-ended responses.<\/p>\n

In response\u00a0to many of the statements, Leigh rightfully asked, \u201cWhat does that mean?\u201d She\u00a0would finally offer \u201cI don\u2019t know.\u201d Because we\u2019ve been at home for more than a\u00a0year she replied to several statements with \u201cI don\u2019t have any friends. How do I\u00a0know what other kids are doing?\u201d<\/p>\n

Any\u00a0assessment for social and academic skills runs right into the coronavirus\u00a0pandemic. The best I could do for the parent forms is think back more than a\u00a0year and mark what I could.<\/p>\n

Leigh has\u00a0had mental health assessments every two to three years. Her sister, Anne, had\u00a0assessments in the past, too.<\/p>\n

There will\u00a0always be another assessment. There will be changes in medical science and in\u00a0mental health. The psychiatrists likely will revise the Diagnostic and\u00a0Statistical Manual of Mental Disorders<\/strong><\/em>\u00a0(DSM)<\/strong> at least once as the girls become young\u00a0women. Labels will change and treatments will change.<\/p>\n

Assessment.\u00a0What does it even mean to assess the neurodiverse?<\/p>\n

I only vaguely\u00a0remember the assessments of my childhood, including the assessments for the\u00a0gifted and talented program in elementary school. Gifted. That\u2019s a complicated\u00a0label.<\/p>\n

Schools\u00a0perform basic assessments, and often grudgingly. Gifted? Those students are\u00a0worth a test or two. Autistic? Learning disabilities? Schools might not want to\u00a0identify those children. Labels come with a price.<\/p>\n

Yes, I\u2019m\u00a0cynical when it comes to school-provided assessments. In 2019, California\u2019s\u00a0Legislative Analyst Office estimated that special education students cost three\u00a0times the \u201caverage\u201d student<\/a> to educate. Between 12 and 15 percent of public\u00a0education students receive some special education supports nationally.<\/p>\n

Parents who\u00a0have the financial means often obtain independent assessments to force schools\u00a0into compliance with state and federal regulations. Every child is guaranteed a\u00a0free and appropriate public education under federal law. That doesn\u2019t always\u00a0happen.<\/p>\n

My parents\u00a0could never have afforded assessments of any kind. I\u2019m not sure anything would\u00a0have been available or appropriate, regardless.<\/p>\n

Susan and I, fortunately, have good insurance, which is covering the costs for Leigh\u2019s\u00a0assessment. We\u2019ll have the results when we meet with her IEP\/504 Plan team at\u00a0the elementary school.<\/p>\n

A\u00a0comprehensive assessment can cost $3000 or more today.<\/strong><\/p>\n

Susan and I\u00a0are seeking this assessment for Leigh because she needs it. This isn\u2019t about\u00a0chasing a label \u2014 I don\u2019t care what labels are used. Leigh is struggling and\u00a0she needs our help to thrive.<\/p>\n

Screening\u00a0for attention deficit, learning disabilities, or autism takes hours, even days.\u00a0The test instruments are expensive, with publishers charging significant fees\u00a0for the booklets. Scoring and interpreting results takes time, too.<\/p>\n

I hate\u00a0assessments. They take time, cause stress, and change how teachers and\u00a0administrators treat a student. I know firsthand how radically things changed\u00a0once I was \u201cgifted\u201d and not merely a disruptive troublemaker.<\/p>\n

Labels from\u00a0the ancient past are meaningless. I\u2019m not confident about the labels our\u00a0daughters have or will receive.<\/p>\n

My labels\u00a0changed. They \u201cevolved\u201d is supposedly the polite word for it.<\/p>\n

The DSM-II,\u00a0even the 1974 revision, might as well have been written by monks during the\u00a0Dark Ages. The DSM-III appeared in 1980 and that edition was revised in 1987.\u00a0The DSM-IV lingered around from 1994 until 2013, with a \u201crevised edition\u201d in\u00a02000.<\/p>\n

I was\u00a0assessed for ADHD in the late 90s, autism in 2007, and there were a few\u00a0neurological screenings between those assessments. There was an additional\u00a0neurological screening after the autism assessment.<\/p>\n

Susan\u00a0endured my journey through various diagnoses, mistaken medications, and bad\u00a0therapists. At least the autism diagnosis clarified why little else worked to\u00a0change me or to improve my life.<\/p>\n

We need to\u00a0better know what our daughters\u2019 needs are \u2014 especially now before they are\u00a0preteens and teenagers. Whatever doubts I have about mental health labels and\u00a0treatments, information helps.<\/p>\n

After every\u00a0assessment, theirs and mine, weeks pass before the results are presented. We\u00a0won\u2019t have the results of Leigh\u2019s new assessment until mid to late June.<\/p>\n

Leigh\u2019s\u00a0current labels include Post-Traumatic Stress Disorder; Reactive Attachment\u00a0Disorder; RAD with Disinhibited Social Engagement Disorder, child neglect and\u00a0abuse; and Attention-Deficit\/Hyperactivity Disorder.<\/p>\n

Anne has\u00a0similar diagnoses, with the additions of Childhood Adjustment Disorder and\u00a0Childhood Depression. I\u2019m not sure how \u201cchildhood\u201d changes the diagnoses. One\u00a0therapist suggested these might be outgrown someday, but that seems strange to\u00a0me. At best, we learn to cope with our childhood traumas.<\/p>\n

Leigh and\u00a0Anne were our foster children from late 2015 until mid-2019. Despite their\u00a0young ages when they arrived at our home, their early experiences and being\u00a0foster children led to early trauma.<\/p>\n

People assume\u00a0that everything must have been great since the girls were with us, and only us,\u00a0after being placed.<\/p>\n

Imagine\u00a0being uncertain, week after week. Your birth parents probably tell you everyone\u00a0will be together again. Your foster parents are the ones caring for you and\u00a0meeting your needs.<\/p>\n

Now, how do\u00a0we separate the trauma and anxiety from their experiences from ADHD or autism?\u00a0The observable behaviors of various conditions overlap in the DSM. There\u2019s no\u00a0brain scan that gives a perfect diagnosis. Parents like Susan and I turn to\u00a0experts and hope the labels applied to our children lead to the best\u00a0treatments.<\/p>\n

ADHD is a\u00a0medical condition<\/strong>, not a behavioral problem. It\u2019s a neurological difference\u00a0that sometimes can be treated with medications. Some autistic self-advocates\u00a0tell me that we\u2019re wrong to use medication for ADHD. These advocates argue ADHD\u00a0represents diversity, not disability.<\/p>\n

The brain\u00a0is a physical organ of the body.<\/strong> The divide between mental health and physical\u00a0health is an artificial one that contributes to debates and misunderstandings.<\/p>\n

It\u2019s no\u00a0accident that once a condition has an identifiable physically testable cause\u00a0that the powers-that-be remove the condition from the DSM. When the genetic\u00a0cause of Rett Syndrome was identified, the APA removed Rett from within the\u00a0autism spectrum. Rett is now considered a \u201cmedical\u201d diagnosis, not a set of\u00a0autistic behaviors.<\/p>\n

The DSM\u2019s\u00a0absurdity is that a medical condition might cause behaviors, but then it is no\u00a0longer a mental health condition.<\/p>\n

To be a\u00a0mental health condition, the etiology (the cause) must remain unknown. This\u00a0gives the mental health diagnosticians a mystical power to read their holy\u00a0scripture and decree that an individual has a mental disorder.<\/p>\n

My dark and\u00a0cynical view aside, there\u2019s no question that some mental health conditions can\u00a0be successfully treated with medical interventions. That\u2019s why psychiatrists\u00a0are medical doctors and I wish more were neurologists as well.<\/p>\n

I\u2019m not\u00a0eager to medicate a child. Susan knows I\u2019d rather not use any medications for\u00a0myself, either. But, Leigh wants to do things and cannot focus. She does not\u00a0sleep well. She\u2019s anxious. She is unhappy with herself.<\/p>\n

The brain,\u00a0as an organ, has physical differences that become disabilities in some\u00a0situations. In those circumstances, a physical or chemical treatment might\u00a0offer relief of the symptoms.<\/p>\n

I treat my\u00a0diabetes, anemia, and cholesterol with medications. I have used medications to\u00a0reduce migraines, seizures, and ADHD.<\/p>\n

If the\u00a0assessment determines it is most likely ADHD causing focus challenges, then we\u00a0will continue to try medications and relaxation techniques. If the assessment\u00a0suggests other causes for Leigh\u2019s struggles, then we\u2019ll evaluate what might\u00a0best meet her needs.<\/p>\n

An autistic\u00a0colleague asked if I\u2019ll be relieved to have an autism diagnosis for Leigh.<\/p>\n

No. I won\u2019t\u00a0be relieved… I\u2019ll be better informed. We will discuss whatever we learn with\u00a0Leigh in language we hope she understands, too. She has a right to any\u00a0information that might help her with self-care.<\/p>\n

Over time,\u00a0I learned strategies that have eliminated the need for ADHD medications. I\u00a0actively make choices that avoid migraine triggers. I exercise to reduce the\u00a0symptoms of diabetes. Information about my body and my mind helps me take care\u00a0of myself.<\/p>\n

Ideally,\u00a0Leigh will use what she learns to meet her physical and emotional needs in\u00a0healthy and positive ways.<\/p>\n

As Anne\u00a0gets older we will want more information about her needs, too.<\/p>\n

The labels\u00a0are whatever they are.<\/p>\n

We need to\u00a0know why occupational and physical therapy haven\u2019t helped Leigh with proprioception.\u00a0Why does she trip over herself? Why does she walk into walls and doors? Her\u00a0poor body is covered in bruises just from walking inside our house. Why does\u00a0she struggle with utensils when eating? Why does she get confused by new words\u00a0or phrases?<\/p>\n

Yes, I see\u00a0what might be autistic traits. But what if the traits are from neglect? What if\u00a0they are part of ADHD, PTSD, or something else?<\/p>\n

With the\u00a0pandemic, we\u2019ve had to wait a year before moving forward with an assessment.\u00a0During this year, we\u2019ve observed the girls every waking hour of the day. Being\u00a0at home together, we better understand how difficult some tasks and activities\u00a0are for Leigh and Anne.<\/p>\n

We love the\u00a0girls. Watching them struggle and be unhappy upsets me.<\/p>\n

Hopefully,\u00a0we\u2019ll have some answers in June. Until then, I\u2019ll do what I do best and worry\u00a0about how to help the girls be their best selves.<\/p>\n

I am\u00a0Christopher Scott Wyatt, speaking as The Autistic Me<\/strong>, a label assigned by\u00a0neuropsychologists who were using the DSM-IV-TR.<\/p>\n

Follow The\u00a0Autistic Me on Facebook and Twitter. Consider reviewing and recommending The\u00a0Autistic Me Podcast<\/strong><\/em> to help expand our audience.<\/p>\n

Thank you\u00a0for listening.<\/p>\n

The\u00a0Autistic Me<\/h3>\n