The Child Behind the Diagnosis

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by jendoop

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?

About jendoop

Jen writes, reads, paints, walks, prays, eats and sleeps. Paul is her co-conspirator in teaching these skills to 4 children.

4 Responses to The Child Behind the Diagnosis

  1. I think there is always a completely effective treatment. The problem with effective treatments is that they don’t always seem to be working at first. For example, chemotherapy, often an effective treatment for cancer, seems to make your health worse at first, rather than better. Hair loss, nausea, weakness, the side effects go on and on and on. But eventually, your cancer goes into remission, and the treatment is considered effective.

    Like the effective treatment for cancer, the most effective treatment for any ailment of this life is the atonement of Jesus Christ. But the benefits of the treatment may not be completely visible at this stage of our lives. We may not ever even experience the benefits in this life – not completely. But through the atonement of Jesus Christ and the resurrection, all these ailments will be cured in the next life. And the glory of the atonement is that it can give us strength to endure the nausea, hair loss, and weakness as we wait for the glorious day when all our “cancers” go into remission, and we are made perfect and whole.

    As a thought to your other questions – we can always show more love and mercy to those with difficulties, whether they be ADHD and Autism, or addictions and poor choices. Whether the pain and struggles come to a person because of this imperfect world (Down’s syndrome, ADHD, depression, etc) or because of their own choices, we can always learn to show more love and mercy toward the weak and downtrodden. Indeed, those who have been baptized made a promise to do so – to bear one another’s burdens and to share in each other’s sorrows.

  2. Paul says:

    jendoop, this post speaks to me on so many levels. As I was growing up in the church, I had a classmate all through my years who suffered from severe autism. He was nearly non-verbal. As a result of sitting with him side-by-side for so many years, I learned incredible empathy, and I count it a great blessing to have known him. I acknowledge that not all my classmates had the same experience I did; some exploited his ability to disrupt a lesson pretty regularly.

    I have children with a range of disorders from depression to Asbergers (then re-diagnosed to PDD-NOS) to ADHD. I have to say I’m exceptionally pleased with patient and loving teachers and leaders who are happy to have my input as a parent as they seek to form relationships with and guide my kids.

    I know in my own interactions with my ADHD daughter, the key for real communication is for me to pay attention to her in the moment. I imagine that’s how the Savior would communicate with her, too.

  3. Tiffany W. says:

    Thank you for this excellent post. I do not think that saying that something that cannot be cured reduces our hope in Christ. I have lupus, which cannot be cured. When diagnosed with this disease, a blessing told me that I wouldn’t be healed in this life, but that the Lord will bless me to be able to cope with the disease and have enough strength to do what is important. In the 8 years I have lived with this disease, I know that this promise has been fulfilled over and over again. I think that knowing that this affliction is a temporal one, but something I have to endure in this life, has given me greater hope in Christ. I feel like I have to rely on the Savior much more because my body is weak.

    Two of my sons have ADHD and I believe that another son will be diagnosed soon. I look at their challenges in the same way. Perhaps the Savior will see fit to heal them in this life. But if He doesn’t, I believe that they can look to the Savior for strength, support, and succor.

    I think we could all use more compassion and kindness in dealing with others. Many of us carry hidden disorders, chronic illnesses, etc. that impact our behaviors, decisions, and attitudes. I’m not saying that we should be excused for acting poorly, but rather that we ought to extend more mercy and compassion and love to one another.

  4. jendoop says:

    Becca, I appreciate your sentiment, and I believe that Christ will eventually make all things right. But to say that chemo heals cancer is a misinterpretation. It literally kills, sometimes the patient survives. The stats bear that out. I do not think of chemo as healing but more of a scorching of the earth in hope that something survives last ditch effort. The medical world needs to stop seeing it as effective and find a true cure! But no analogy is perfect, excuse my disdain for the ugliness of cancer and chemo.

    We have to be careful when we get enthusiastic about our faith in Christ. It can come off as patronizing to those who suffer with real issues day in and day out, which cause pain, heartache, and soul crushing fatigue. I think Tiffany’s comment illustrates my point, and you said it too Becca. Christ doesn’t fix everything, but he is there every step of the way.

    Paul, It sounds as though we are both in a good position to learn and grow. Thank you for sharing your story, and for understanding my heartache in behalf of those I love.

    For the most part I have seen teachers and leaders act with compassion, but other times in the church we get very focused on what SHOULD happen. Children SHOULD always behave. And when they don’t their parents SHOULD be called. They SHOULD get some help. They SHOULD have known he wouldn’t be able to interact with the other kids… and on and on.

    Parents need a break, they are doing everything in their power to help their children. Even children with these issues need opportunities to grow, and sometimes that means putting them in your primary class, or putting them next to your child, or sitting behind you in sacrament meeting. As President Monson has metioned, we can’t make the details matter more than a person to be loved.

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