Welcome to my blog, which speaks to parents, professionals who work with children, and policy makers. Through stories from my behavioral pediatrics practice (with details changed to protect privacy) I will show how contemporary research in child development can be applied to support parents in their efforts to facilitate their children’s healthy emotional development. I will address factors that converge to obstruct such support. These include limited access to quality mental health care, influences of a powerful health insurance industry and intensive marketing efforts by the pharmaceutical industry.

Sunday, January 22, 2012

The Autism Label Controversy: A Child's View

Child's voice. " I am very smart and tuned in to everything happening around me. I get overwhelmed when there are a lot of people. I love music, but I hear every sound so intensely that I need to cover my ears. Sometimes I run around in circles to help myself calm down. When grown-ups make me go somewhere that is too loud or confusing, I lie down on the floor and scream. When people get too close I cant' stand it. Sometimes I hit the other kids when this happens and now I can't go to preschool. My parents fight all the time about what to do about my difficult behavior. My little sister is very quiet because she knows to get out of the way when I am having trouble"

Adult's voice. "He has Autism"

Certainly this child and his family need help. An occupational therapist consulting in the school setting would be able to help this child give words to his experience. She could support both the teachers' efforts to understand what environments are challenging and how to manage these challenges. She might even recommend a different school setting that is more compatible. A therapist working with parents and child together would similarly help them as a family to manage this child's unique biological vulnerabilities.

If the proposed changes to the diagnostic criteria for autism in DSM V, the newest version of Diagnostic and Statistical Manual of Mental Disorders, result in children like this not getting the help they need, as a recent article in the New York Times suggests, it will be a terrible loss for these families. It will result in increased costs to society when these unaddressed problems grow into bigger problems in later childhood and adulthood, as they inevitably will.

This fear was expressed by Lori Shery, president of the Asperger Syndrome Education Network, when she was quoted in the article saying “If clinicians say, ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure."

But the real question is this: Why have we created a health care system where the insurance industry, a for-profit business, is allowed to dictate our children's experience in this way?

The need for a diagnosis is primarily driven by the health insurance industry. Clinicians need to have something to bill for, so that services are "covered.". " As I state in my book Keeping Your Child in Mind," [This] is a dangerous example of the tail wagging the dog."

From the young child's perspective, there is a significant downside to receiving such a label. As my book states:
Parents who receive a label of a major psychiatric diagnosis for their child inevitably go through a period of mourning. The child they had is gone and has been replaced by a child with a “disorder.” As D. W. Winnicott so wisely observed, a child develops a healthy sense of self when the people who care for him recognize the meaning of his behavior, rather than substituting their own adult meaning. Parents often begin to regard behaviors as “symptoms” of the “disorder.” For a very young child whose development is unfolding, his “true self” might be lost in the face of such a frightening label. It is my hope that we can move from an emphasis on diagnosis and labeling to an emphasis on prevention. We need to ask not “what is the disorder?” but rather, “what is the experience of this particular child and family?” and “what can we do to move things in a better direction?”
From a young child's perspective, the diagnosis with a psychiatric disorder reduces the complexity of his experience to a label that by its very nature indicates that there is something "wrong with him."

I had a similar discussion with a child psychiatrist who is advocating for the diagnosis of "preschool depression." Certainly young children can struggle with disturbances of mood, and, as is the case with the above child, these families need help, and early intervention is essential to prevent more significant and deeply entrenched difficulties.

But as is the case with the diagnosis of autism, the diagnosis of depression in a young child reduces the complexity of his experience to a disorder, and clearly locates the problem within the child. Often there is a complex interaction between the child's unique biological vulnerabilities and his environment. Qualities that are problems in early childhood may, with the right help, be transformed into adaptive assets as he grows up.

In a previous post I wrote about a new book, Childism, that calls attention to a kind of prejudice against children that exists in our culture. In a sense this kind of labeling can be seen as a manifestation of that prejudice.

Many parents of children with the diagnosis of autism object to my perspective, describing relief that the things they were struggling with had a name. But what if teachers, friends, grandparents, and clinicians were respectful of their struggles and provided help without having to burden their child with a "disorder?" I suspect that these same parents would prefer the latter scenario.

By focusing the discussion on the question: "what are the diagnostic criteria for autism,", we are failing to see the forest for the trees. The real question is "Why are we as a society willing to give the insurance industry so much control over our children's lives?"

5 comments:

  1. I like your comment, "Qualities that are problems in early childhood may, with the right help, be transformed into adaptive assets when the child grows up." This is the mindset of the teachers and administrators at a new school I'm volunteering at for kids with Aspergers and Autism Spectrum in Boulder, Colorado called the Temple Grandin School.

    When I asked parents of students at the school what I should read to help me better understand Aspergers and Autism spectrum disorders, they recommended Tony Attwood's book The Complete Guide to Asperger's Syndrome.

    I'm not completely through it yet, but this book includes many descriptions from people with Aspergers describing what it feels like from the inside. It's been quite helpful for me and has reminded me that given help early on, people with Autism spectrum disorders have a lot they can offer to our society.

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  2. Hi Dr. Gold,

    I just posted a link to this article at The Thinking Person's Guide to Autism's Facebook page. Often the TPGA commenters don't come back to the original post to comment, so here's the link

    http://www.facebook.com/thinkingpersonsguidetoautism/posts/176917535746248

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  3. I really like your blog, Dr. Gold, I'm surprised I only found it now.

    But as a parent of a child with sensory processing disorder, I couldn't help thinking that the description in the first paragraph sounded more like SPD than autism. Perhaps high-functioning autism. Actually the description sounds pretty close to my son's personality and behavior, and for a very long few months I debated if I was looking at SPD or high-functioning autism. Any professional I consulted with insisted it was just SPD, nothing more.

    You wrote about parents seeing the child more as the disorder than as the child. And also about seeing the inappropriate behavior as symptoms of the disorder instead of bad behavior. I have to respectfully disagree with the first point as that has not been my experience nor of the other parents I know of special needs children. I am the admin of the blog http://www.sensoryandmore.com so I get to meet quite a few. On the second point, recognizing that the inappropriate behavior is a symptom of the disorder is a necessity in order to deal with the behavior properly. Otherwise the parents have zero or ineffective tools to work with in dealing with their children. Especially as typical discipline measures do nothing for these children.
    While I would love to see a more supportive world of parents struggling with their children, I think it's a fantasy. Just about everyone is caught up in their own lives without much time to spare.
    On my blog I make sure to emphasize that there is certainly a very positive, wonderfully unique side to having a child with special-needs, but that doesn't take away the fact that raising a special-needs child is hard and stressful. Even with support.

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  4. I really like your blog, Dr. Gold, I'm surprised I only found it now.

    But as a parent of a child with sensory processing disorder, I couldn't help thinking that the description in the first paragraph sounded more like SPD than autism. Perhaps high-functioning autism. Actually the description sounds pretty close to my son's personality and behavior, and for a very long few months I debated if I was looking at SPD or high-functioning autism. Any professional I consulted with insisted it was just SPD, nothing more.

    You wrote about parents seeing the child more as the disorder than as the child. And also about seeing the inappropriate behavior as symptoms of the disorder instead of bad behavior. I have to respectfully disagree with the first point as that has not been my experience nor of the other parents I know of special needs children. I am the admin of the blog http://www.sensoryandmore.com so I get to meet quite a few. On the second point, recognizing that the inappropriate behavior is a symptom of the disorder is a necessity in order to deal with the behavior properly. Otherwise the parents have zero or ineffective tools to work with in dealing with their children. Especially as typical discipline measures do nothing for these children.
    While I would love to see a more supportive world of parents struggling with their children, I think it's a fantasy. Just about everyone is caught up in their own lives without much time to spare.
    On my blog I make sure to emphasize that there is certainly a very positive, wonderfully unique side to having a child with special-needs, but that doesn't take away the fact that raising a special-needs child is hard and stressful. Even with support.

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  5. Thank you for your comment, Meyer, and I do appreciate your perspective. I would hope that an empathic approach to both parent and child is possible. Much of what I write comes from my experience practicing pediatrics, where I often see kids who have been diagnosed with autism when sensory processing problems are the major component of their difficulties. it is not so much that the behavior is seen as "bad,' as that the meaning of the behavior is not recognized. Other important issues including family history, family dynamics and other stresses on the child may be neglected when there is an exclusive focus on symptoms.

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