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.

Monday, June 23, 2014

ADHD at 4, Violent at 15: Are Lessons Learned?

When I write about lessons I have learned from my patients, I go to great lengths to protect their privacy by altering details and identifying information. However, as the Serpico family has so generously and bravely offered their story to the public in the New York Times, the details are available for all to see. And the story offers a very important lesson.

The focus of the article, Seeing Son's Violent Potential, But Finding Little Help or Hope is on the current situation- on how a well-insured, well-educated family is struggling to get help for their deeply troubled teenage son.

But the lesson comes early on, and is contained in this paragraph:
Lena and Robert Serpico knew something was not right before their son was in kindergarten. They had taken him and his younger brother in as foster children from a mother who used drugs, and they later adopted both. The older boy, whose name is not being published at the Serpicos’ request, was restless and impulsive from the beginning and got his first diagnosis at age 4: attention deficit hyperactivity disorder.
While the amount of time this boy lived with his biological mother is not stated, if he was the older of two brothers and they were placed in foster care together, it was at least nine months. The human infant is uniquely helpless in the early weeks and months of life. His brain develops the capacity for self-regulation when the people who care for him can be present and attuned. The brain undergoes its most rapid development in the first year. A caregiver who is using drugs will be impaired in her ability to offer this attunment, significantly impacting on that child's self-regulation capacity. Separation from a primary caregiver, no matter how impaired, is itself traumatic even for a very young child.

The good news is that the brain continues to grow and change rapidly in the first 5 years. There is ample opportunity to set things on a better path even in the face of early adversity. Several evidence based interventions, such as Child-Parent Psychotherapy, can help parents make sense of a child's behavior and so set development, at the level of brain structure and function, on a better path. When early childhood educators recognize the impact of early experience, as in the Head Start-Trauma Smart program, there is opportunity to support healthy development in the classroom.

But for this child, there is no indication of any significant intervention before age 4, despite the fact that he was "restless and impulsive from the beginning." There seems to be no link made between his early developmental experience and his difficulty with self-regulation. Though the article does not address this question, I wonder how much information his adoptive parents were given about the developmental effects of his early life experience. I wonder how much support they were given in the early years of foster care and then adoption.  Was there space and time to listen to them? By labeling his constellation of behaviors at age 4 as "ADHD" and prescribing medication, the path to finding meaning in his behavior was closed off.

Because stimulant medication is so effective at controlling behavior, his impulsively subsided in the elementary school years. But given his history, it is almost inevitable that without addressing the underlying cause for the behavioral and emotional dysregulation, with the onset of adolescence symptoms would resurface. While the short term goal of sitting still and paying attention in school was achieved, valuable time was lost.  His opportunity to communicate his need for help with self-regulation was silenced by medication.

He showed an affinity for guitar during those years of relative peace. Music,  martial arts, theater athletics, and a range of other activities, both through the activities themselves as well as the relationships formed, are other ways in which children can develop emotional, attentional and behavioral regulation.  With a diagnosis made and his symptoms effectively eliminated, motivation to pursue more creative, long lasting interventions, either in addition to or instead of medication, was likely not there.

What instead followed was a string of different diagnoses and medications, with what his parents describe as a terrifying downward spiral in mental health,  in parallel with a dramatic upward spiral of health care costs.

Virtually all of the comments on the article, over 800 as I write this, focus on the Serpico's struggles to get, and pay for, appropriate care for their teenage son. Certainly that is an important issue. Early intervention will be of no use to the Serpico family now. In fact, it might be quite painful to think of missed opportunities.

But the real value of this story lies in its cautionary nature. If it can be used to advocate for recognition of the impact of early development, and for investment in preventive intervention in the early years, their story could potentially help to save a lot of grief, suffering, and money.

2 comments:

  1. Dr. Gold,
    Thank you for your work on behalf of children’s mental health needs. I am the mother in the NYT article, and I too hope it can be used to advocate for intervention in early years.
    As far as my specific situation, we did have early intervention, at the age of 3. He had an IEP with the State of Illinois and went to a special education preschool, which included therapy. The medication didn't start at age 4 - it was prescribed in the fifth grade when he couldn't sit still for even 10 seconds to concentrate at school. Medication was a last resort - I don't believe in medicating children except in extreme case. Believe me when I tell you that this was an extreme case.
    Also, there was space and time to listen to him. I spent his early years by his side, at home. He and his brother had all of my attention and all of my love - all day, every day.
    He came to live with us when he was 2 1/2, We were aware of the biological mother's drug use while pregnant and in these early years of his life. Were we given information about developmental effects those traumatic years would have on him by the agency we adopted from? No we were not. Would it have made any difference? Again, no. As far as I am aware, no one has a technique for determining which children that have had early childhood trauma will later be diagnosed with mental illness. If we did know, would we have adopted him anyway? Of course we would. He needed parents to love him; we were able to do that. It turns out that he needed parents and advocates, as well as a community of professionals
    The reason for my husband and I sharing our story was only this - we have spent years trying to get help for him - begging, pleading, screaming for help - but most of the time no one is listening. And let me ask you this – if it was an article on trying to get children treatment for cancer, instead of mental illness, would anyone have questioned why we were talking about it? I want people to think about that, because mental illness may be the last stigma in our society. The only way to reduce stigma is to talk about it.
    Finding care for a child in the bureaucracy of the health and insurance world is a hellish maze to get lost in. Fighting for health care for their child is something that no parent should have to deal with, especially in the most traumatic, unbearably stressful time of both their child's life and their own.

    Lena Serpico

    ReplyDelete
  2. Hi Lena

    Thank you for your response. I apologize for the misrepresentation of the age at which medication was started. I absolutely agree with you about the stigma of mental illness and the need to call attention to this abysmal situation. i would take that one step further to say that our culture does not sufficiently value children and parents. I wrote, "Was there space and time to listen to them?" Not questioning your listening to your son, but rather our society's listening to you. Resources supporting of parents, particularly in the setting of raising an emotionally troubled child, are lacking. As you say, you were screaming and no one was listening.

    And I certainly did not mean to imply that if you had had a better understanding of the developmental implications of his early life experience you would not have adopted him. My aim was to point to the fact that making sense of behavior in the context of early development can help point in the direction of meaningful intervention, as in the CPP that I mention in the article. I have seen many parents in a similar situation (and often the child has been medicated well before age 10) who struggle terribly to make sense of difficult behavior that persists even when they provide a generous and loving home. Sometimes giving it the label of ADHD can obscure the developmental underpinnings of the problem that can lead to an understanding of why the problematic pehavior persists.
    Psychiatrist Bruce Perry has developed the neurosequential model of therapeutics that incorporates understanding of the developmental context in to treatment.Are you familiar with his work? http://childtrauma.org/ And last, I do recognize that medication may be necessary in this kind of situation.
    I'm happy to continue the conversation either here or via email if you like. Thank you for sharing your story and I wish you all the best.

    ReplyDelete