The Child Behind the Diagnosis
Later in life than is usual, I’m a college student studying psychology. In some ways I feel like I missed the boat by not doing this 20 years ago, but mostly I feel like I waited for a more seaworthy vessel to come along. Life has given me experiences that enhance my learning and I believe it will make me a better therapist.
That said, sometimes reading all this psychology stuff rubs against my softer side and I can’t take it. I complained to a friend who is a Psychology professor and her response was, “Oh! Isn’t Abnormal Psych great? It’s my favorite class!”
I think the very thing that led me to psychology is the very thing that makes it so difficult. I care.
It was time to study and I didn’t feel like it, so I went to the library where I’d be deprived of distractions. Entering the quiet chill of the library, I sat at a warm oak table next to the window and laid down my Ab Psych textbook.
Today’s chapter: Developmental Disorders. ADHD. Autism. Asperger’s. Down’s Syndrome.
That would be Devin, Rozzie, Ryan, and Reagan. My nephew, my niece, my nephew, my friend’s daughter.
I couldn’t see the cold clinical facts on the page, instead I saw each child as I read.
“Inattention, hyperactivity, and impulsivity often cause other problems that appear secondary to ADHD. Academic performance tends to suffer… Children with ADHD are likely to be unpopular and rejected by their peers… Problems with peers combined with frequent negative feedback from parents and teachers often result in low self-esteem among these children.”*
In this I could see my nephew, Devin, with dark blond hair hanging low to his eyes, impish face and eager eyes; at 15 years old struggling to find a way through life. I imagine the teasing and taunting he’s endured, the loneliness and confusion. How would it feel over the years, no matter how hard you try friends don’t gather and teachers don’t praise.
“Poor parenting is not responsible for autism. Deficits in such skills as socialization and communication appear to be biological in origin… Three of every four people with autism also have some level of mental retardation… it has been estimated that between 30% and 75% of these people display some neurological abnormality such as clumsiness and abnormal posture or gait.”*
In this I did not see my niece Rozzie, but the label is hung around her neck. She is either too cute at 4 years old to carry this heavy diagnosis, or my eyes refuse to see it. Shy yet determined, her sweet smile is inconsistent with a disorder characterized by impairment in social interactions. My understanding (something my textbook did not mention) is that children with autism, my niece included, may attain a normal level of development and then regress. I imagine my sister straining to find a diagnosis, a doctor, a preschool, and therapy for her daughter as those milestones that every parent celebrates slipped away like moonbeams.
“[People with Asperger's disorder] can often be quite verbal. This tendency to be obsessed with arcane facts over people, along with their often very formal and academic style of speech, has led some to refer to the disorder as the ‘little professor syndrome’… They often exhibit clumsiness and poor coordination… It is generally believed that many individuals go undiagnosed.”*
Smiling to myself, I think, “This is Ryan.” He was diagnosed fairly early in his school career, but learning what it meant for him specifically has only come over time. I am amazed at how my sister is able to deal with her son’s issues without preconceived expectations. His parents definitely have expectations for him, but to my view they are based on what they know he is capable of, not what any other boy his age is capable of. He is wonderful at playing piano, recently announced on Facebook that he’s writing a book, and is so intelligent that he is just now, in middle school, learning the discipline required for homework. Although my textbook points out that IQ scores for people with Asperger’s are in the normal range, Ryan’s is above that. I am excited to see what he can accomplish with his great intellect and being somewhat unbound by social conventions.
In thinking about this “abnormal” mixture of great intellect and an inability to catch onto social/cultural cues it makes me wonder if it is a glimpse into the next life. Heaven (whichever kingdom you choose) will be a place where all of the peoples of all the earth, from different dispensations, with different customs, will associate. Will an eye roll there mean what an eye roll means to me now? Aspergers helps me to see the ways in which I am stuck in the world, and even though I can’t really change that, I can be aware of those things which are purely social constructions, not what determines the value of a soul.
“Mental retardation is a disorder evident in childhood as significantly below average intellectual and adaptive functioning… Perhaps more than any other group we have studied, people with mental retardation have throughout history received treatment that can best be described as shameful… People with Down’s Syndrome have characteristic facial features, including folds in the corners of their upwardly slanting eyes, a flat nose, and a small mouth… they tend to have congenital heart malformations.”*
It is such a big phrase, “congenital heart malformation,” meaning a baby’s heart can give out before they can even begin the lifelong fight against Down’s Syndrome. A heart defect is what my friend, Caren, worried about most when her daughter, Reagan, was born. After a few days in the hospital her parents were told all was well, and comforted by this, they went home to rest. When they returned they were told her body was inexplicably shutting down.
Later, while painting Reagan’s picture for my friend, I didn’t think about “folds in the corners of upwardly slanting eyes, a flat nose, and small mouth,” I looked at Reagan as a beautiful baby taken too quickly.
Now, Caren reminds those around her that “retarded” is as inappropriate as any other slur. I was surprised to find it in my textbook. I know, it’s a technical term referring to delayed development. But we all know the way it is used most often, in taunts and jeers.
Pushing myself to continue reading, I took hope because the next section addressed treatment. Then, at the bottom of the page I read and re-read, “No completely effective treatment exists.”
I closed the textbook and left the library.
*Barlow, David H. & Durand, V. Mark. 2005. Abnormal Psychology, an integrative approach.
Does the lack of effective cures for these disorders take away our hope in Christ?
In LDS culture do we do our brothers and sisters with Down’s Syndrome a disservice by assuming that they’ve already made it into heaven? On the other hand do we not allow enough patience and mercy for those with difficult behaviors such as ADHD or Autism?
Do we do enough to include people with these disorders in our wards and LDS culture, or are they the difficult ones that we avoid?