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Disability versus Difference

September 2, 2013

When is a child disabled? When is what we – the adults in a child’s life – call a “disability” simply a difference, something that we may find it hard to accommodate, but which does not constitute something wrong with the child?

Few questions cause more tension within families than this. One parent may have one perspective, the other parent the opposite. Or, parents may be united in their sense that a child is “different but not disabled”, yet the school may look at it differently. Conversely, parents may feel strongly that a child must accept and cope with a disability while the child him or herself rejects this identity.

A glance at the literature for parents finds widely divergent viewpoints. One perspective, often offered by clinical professionals, counsels parents to understand, accept, and cope with their child’s condition in a tone not much different from the one that we might adopt to speak with parents of children with diabetes or epilepsy. Another, frequently voiced by parents, argues that society wrongly pathologizes children who think or behave differently – sometimes for benign reasons (such as trying to harness the resources of the special education system to help a child who is struggling in school), sometimes for reasons that are less benign and are rooted in prejudice against those who are different.

As a clinician I find it hard to reject the former model in its entirety. Having worked with patients with severe autism, with paranoid schizophrenia, or with multiple suicide attempts associated with a mood disorder I find it impossible to deny that these individuals live with a disease in just the same way that someone with diabetes lives with a disease – with the twist that the psychiatric disease expresses itself through abnormal cognitive, emotional, and behavioral patterns rather than through abnormal metabolic processes. It is wrong to deny that these patients – who, along with their families, suffer terribly – are struggling with illness.

At the same time, I have met many people who has been told that there was something wrong with them – sometimes in sophisticated clinical terminology, sometimes in the crude language of “lazy” and “stupid” – when in truth the “wrongness” lay not within them but in the poor fit between their learning style and personality and the expectations and demands of their environment. And just as it is wrong to deny the reality of an illness that has a patient in its grip, it is also wrong to tell a capable, motivated young person that their struggles are due to a neurological defect rather than to the rigidity of the systems – familial, educational and otherwise – that they are caught in.

How do we tell the difference between a difference and a disability? We cannot simply make a list of diagnoses falling into one bin and another list for the other, as the distinction frequently cuts across diagnostic lines. I have met many children diagnosed with Asperger’s Syndrome, for instance, who seem to carry that diagnosis because of their families and school’s expectations rather than because of an intrinsic disorder, and other children diagnosed with Asperger’s who seem more clearly disabled. Nor is it simply a matter of severity. Some neuropsychological disorders can readily be incorporated into a healthy life with proper management, while cases of individual-environment mismatch can be devastating if unrecognized.

For families struggling with this issue, I suggest a thought experiment. Ask yourself this set of questions: knowing everything that you do about your child, can you imagine an environment – a world – in which their profile would be adaptive? A world in which their way of thinking, learning, and relating to other people would be an asset rather than a liability? Is such a world feasible? Would it be desirable?

Consider two examples:

Kate is a girl diagnosed with ADHD. She loves sports and works hard to be a good soccer player and she has a good group of close friends, but she hates school and struggles to get C’s. She is frequently in trouble for talking in class, failing to turn in assignments, etc. Ask yourself, what would a world that worked for Kate look like? Perhaps it would be a world in which people spent much of the day outdoors engaged in vigorous physical activity. A world in which the environment was variable and unpredictable, requiring one to do things differently one day than they had the day before. An environment in which advanced literacy skills are optional save for a small group of professionals, but tight social relationships are critical.

Does this world sound feasible? Sure, this is probably what the world was like for much of human history! Small farming communities or groups of hunter/gatherers probably lived in settings which basically met these criteria. Does it sound desirable? For many people it probably sounds idyllic.

Now consider Paul. He has been diagnosed with High Functioning Autism. He has no close social relationships, even with family members. He is versatile with computers and other forms of technology but has trouble navigating even routine social interactions, such as making a purchase in a store or ordering in a restaurant. He adheres to a very consistent routine but any departure from expectations is met with great anxiety and upset and derails the entire day. Ask yourself, what would a world designed for Paul look like? Perhaps it would be a world in which human interaction was negligible, or heavily mediated by computers. A world in which our needs were met not by engaging and forming relationships with other people, but through inanimate technological systems. A world in which there was almost total consistency day-to-day and week-to-week, with no unexpected deviation.

Is such a world even theoretically possible? Has it ever existed? More importantly, even if we could create it would we want to? Or does it sounds like some dystopia out of a science fiction novel?

Thoughtful people will disagree on these points. The process of thinking this through inevitably involves value judgments, as the above examples make clear. Moreover, parents and teachers who are up to their elbows in the day-to-day struggle of helping a child such as Kate through middle school are likely to be inclined to remark: “it’s great that she would have been a happy and healthy kid in a 19th century farming community, but this is 2013 and we have 8th grade math to worry about!”

This is a fair point, but there is still value in clarifying our thinking in this area. It will help us to understand and empathize with our children. It will also help to frame our goals and expectations for their future. Kate’s parents might reasonably say to themselves that they have a hard road to get her through middle school, but that ultimately she will find an environment better suited to her profile and will be positioned to thrive. Paul’s parents, on the other hand, may be concerned that, regardless of his technical competencies, it will be difficult for him to find an environment that allows him to succeed, and will concentrate on intensive interventions to build his social skills and flexibility while he is young.

While not an easy one, the “disability vs. difference” conversation is one which will often families to better understand their children and to plan for their future and in many cases it is one worth having.

DSM-5…it’s not the bible

May 3, 2013

 

“Just because your doctor has a name for your condition doesn’t mean he knows what it is”

                                                                                                                                                                                          -Arthur Bloch

As many of you know, this month we will see the publication of the 5th edition of the Diagnostic and Statistical Manual of Mental Disorder (DSM-5) by the American Psychiatric Association. Often referred to as the “bible” of mental health, DSM provides symptom criteria for hundreds of behavioral health conditions, from schizophrenia to autism to depression.

This most recent iteration of the DSM has been deeply contentious for many reasons. People are upset about what is left out (Asperger’s Disorder), concerned that this may lead to a de-legitimization of a real condition, to loss of eligibility for special education and social services, and to reductions in research funding. People are also upset about what is being added (Disruptive Mood Dysregulation Disorder), fearing that it will over-pathologize normal behaviors and lead to excessive diagnosis and treatment.

Lost in the noise is a realistic sense of what DSM really is. The original problem that DSM was intended to address was the lack of consistency in terminology among mental health professionals. Years ago, the term “depression” might be used in many different ways. A Freudian psychiatrist might mean one thing by the term, a behavioral psychologist another. Lack of terminological consistency makes it impossible to move science forward; I might publish a study on “anxiety”, but how can you replicate it or apply it to your work if we have different understandings of what that word means?

DSM provides concrete, clear, black-and-white definitions of these terms so that there is consistency in their use. That is its purpose. It does not tell us what CAUSES depression or anxiety; what the proper TREATMENTS for schizophrenia are; or what the PROGNOSIS might be for a child with autism. In a recent talk that I gave to the Federation for Children with Special Needs I described it as simply a “dictionary”, a metaphor echoed in a recent online post by Dr. Thomas Insel, the director of the National Institute of Mental Health (click here for his piece). Dr. Insel provides an excellent critique of the DSM-based system of classification and outlines a plan on the part of his agency for developing a more comprehensive approach. Achieving consistency in language is an important step, but we need to move beyond it. We can’t continue to define and classify these terms on the basis of surface symptoms.

The furor over DSM-5 also raises another issue. In many aspects of life we feel that by naming something we make it “real”, and mental health is no different. Conversely, removing a name may make it seem as if something is no longer real or legitimate. Certainly, inclusion of a diagnosis in the DSM has “real world” implications in terms of insurance coverage and service eligibility. We have to remember, however, that simply by developing a label and listing symptom criteria we have not understood the individual to whom the label is applied. That understanding, which is the goal targeted by Dr. Insel and NIMH, will require that we push beyond surface symptoms to understand the “bones” of a disorder – and to do that we need to remember what DSM is, and more importantly what it is not.

Early ID of Autism Critical

October 30, 2012

Recent work from the American Psychological Association (APA) highlights the critical need for early identification of autism spectrum disorders. Read the full piece here…basically, the growing emphasis on intensive intervention before age five further erodes the validity of the “wait and see” approach and lends urgency to specialized assessment as early as possible – for some high risk children, in the first year of life. 

The other critical piece here is the intriguing suggestion that with intensive early intervention it may, in some cases, be possible to move some children “off of the spectrum”. This idea is mixed with a lot of pseudo-science around “autism cures”, but for a sense of what a really good, credible researcher has to say about “optimal outcome” in autism check out this link to an interview with Dr. Deborah Fein at UConn, who is doing some REALLY fascinating work in this regard. 

New Autism Study

May 13, 2011

There’s a new study out in the American Journal of Psychiatry (“Prevalence of Autism Spectrum Disorders in a Total Population Sample”, by Young Shin Kim and colleagues) looking at exactly how common autism and autism spectrum disorders (ASD’s) are in the general population. The statistics that have most commonly been used has been 1 in 100 or 1 in 110 kids, but this project came to a very different conclusion.

Many past studies on the prevalence of autism have gone into communities and looked at medical and educational records in order to count how many kids have the diagnosis. The problem with this is that it obviously fails to count kids who are not identified by their doctors or schools. This study took a community with slightly more than 50,000 kids between the ages of 7 and 12, and tried to actually screen each one for an ASD (autism spectrum disorder). Over the course of five years they had parents fill out questionnaires, and when there were “red flags” they had those kids in for assessment.

The result was that they found A LOT of kids who had not been identified. These were mostly higher functioning kids with IQ scores that were at least in the average range, diagnosed with Aspergers, High Functioning Autism, or PDD-NOS. These were kids who were not receiving specialized services and had not been identified by their doctors.

When the kids who were identified by the researchers were added to the kids who had already been diagnosed, the actual prevalence of ASD in the community was not 1 in 110 or 1 in 100…it was 1 in 38!

Not only is this a surprisingly high number, it is also very interesting in telling us about which kids are most likely to be “flying below the radar” in our communities. The kids who were most likely to be undiagnosed seemed to be not only kids who were higher functioning intellectually, but also girls.

It’s a great study, and a real wake-up call to how often we must be missing kids who are struggling with communication, socialization, and learning right under our noses.

Cocktail

April 23, 2011

Imagine that, every day, you make yourself a cocktail to have with dinner. Not the usual kind, but a “mystery cocktail”. You mix together a variety of chemicals from unmarked bottles…a little of this, a little of that, more or less at random, until you have a glass full of perhaps a dozen different compounds. Now imagine that you get sick. Could it be the cocktail? Possibly…but which chemical is it? Your neighbor drinks the same thing each night and has no problems at all…is it something about your metabolism? One of the ingredients? The way a few of them interact with each other?

A study is just out in the journal Environmental Health Perspectives titled “Prenatal Exposure to Organophosphate Pesticides and IQ in Seven Year Old Children” (by Maryese Bouchard and colleagues). It makes a convincing case that children exposed to pesticides prior to birth are prone to later developmental problems and that they test significantly lower on IQ testing by the time they enter school. The more pesticide exposure, the worse the effect. How much of an effect is it? It’s a complicated question that will be different for each child, but one way of looking at it is that, for an average child, the effect could knock their level of intellectual functioning down from the 50th percentile (better than half of their peers) to around the 30th percentile (better than less than one-third of their peers).

This is not the first time that pesticide exposure has been linked with developmental problems, but the design and length of this study are particularly impressive. It comes at a time when we’re increasingly reminded of the chemical cocktail that we are raising our children in. Recent publicity has focused on the FDA’s consideration of the possible role of food dye in the development of ADHD. In a close vote the board decided not to place warning labels on foods with those dyes. This may or may not be a good decision, but it comes at a time when a new study, published in the British medical journal The Lancet, provides the most compelling evidence yet that food intake substantially influences ADHD symptoms, at least for some children. In the study (“Effects of a Restricted Elimination Diet on the Behavior of Children with Attention Deficit Hyperactivity Disorder – a Randomized Controlled Trial”; Lidy Pelsser and colleagues), many children with ADHD showed a positive response to a restricted elimination diet. Subsequently, these responders were challenged with foods for which prior testing had suggested that they had an atypical immune response. Most experienced a symptom relapse.

The relationship between chemicals in the environment and problems in child development is likely to be very complicated and to involve many different factors. Another recent study in Environmental Health Perspectives (“Prenatal Exposure to Organophosphates, Paraoxanase 1, and Cognitive Development in Childhood” by Stephanie Engel and colleagues) also showed that prenatal pesticide exposure harms future cognitive development, but also showed that this impact was literally “filtered” by the mother’s genetics. Specifically, moms with a gene that predisposed them to slower metabolism of the pesticide had kids who were more severely impacted by the early exposure. Their bodies seemed to let the pesticides float around longer, allowing more time for the fetus to be damaged.

Sometimes I think of our children’s developing brains as the “canary in the mine”, warning us of the impact of an increasingly poisonous environment. Yet it’s incredibly difficult to tease out which chemicals are the culprits, and how they are doing their damage. In this context, it’s worth taking a moment to recognize the profoundly harmful impact of scientists who offer up misleading theories about environmental contaminants. The New York Times ran an article this week reviewing the case of Dr. Andrew Wakefield, the physician who originally made a connection between the MMR vaccine and autism (“The Crash and Burn of an Autism Guru” by Susan Dominus: http://www.nytimes.com/2011/04/24/magazine/mag-24Autism-t.html?_r=1). Setting aside the illnesses and deaths associated with vaccine refusal, and also setting aside the needless guilt endured by parents of autistic children who blame themselves for letting their kids get vaccinated, the relentless propounding of this sort of (completely) discredited theory saps the legitimacy of valid research into environmental causes of developmental disorders and clouds our ability to see the connections that we need to understand.

So, returning to the cocktail, let’s change the story a little bit. Imagine now that it’s not you, but your child who has to drink the cocktail and who gets sick. And imagine that the cocktail isn’t optional; it’s literally part of the air they breath, the food they eat, the water they drink. How urgent would you feel it was to isolate the offending ingredients and to get rid of them?

The human cost

April 22, 2011

Disconnection. That was the only way to describe “Lewis” (not his actual name) as he and his mother settled into the waiting room. A healthy, enthusiastic six year old, Lewis had been brought to my office at the recommendation of his kindergarten teacher. By secret recommendation, I should add, since an explicit “on the record” statement of concern to Lewis’ mother would have endangered the young teacher’s job. She had noticed that Lewis wasn’t playing with the other children in the way that she would expect of a bright child of his age (the school psychologist had examined Lewis and determined that he was, in fact, “bright” – at least in the way that IQ tests measure). She had also noticed some odd behaviors, some unusual use of language, observations that had resonated with the training she had received in identifying students with special needs.

The neuropsychological evaluation conclusively revealed that Lewis was a student with high functioning autism. Although a sweet, intelligent, deeply well-meaning child (who invited me to his home for game night), Lewis was profoundly unable to understand other people in an age-appropriate manner; to sustain attention and effort for any period of time; or to use language effectively to learn and to communicate.

Fortunately, decades of research have given us a clear prescription for Lewis. While there is no medical treatment to cure his condition, intensive behavioral and educational intervention can make an immense difference in building his skill base and connecting him to the world around him. We also know that it is critical that these interventions be delivered now, and that they will yield diminishing returns as he grows older.

Our state and federal government has put laws into place mandating that Lewis’ school provide these interventions. What they have not done is adequately fund these laws, leaving Lewis’ town (an attractive suburb outside of Boston), his school, and his family in an untenable situation. His teacher is reduced to giving “deniable” feedback to his parents in the parking lot, because if her concern was voiced on the record in the classroom it could trigger requirements for assessment and intervention by the school. Because these are non-negotiable legal mandates the school itself cannot plead poverty on the issue and refuse to provide services on financial grounds. Therefore, administrators are forced to construct a Kafkaesque web of red tape to limit the access of families such as Lewis’ to special education services. And finally, Lewis’ parents are watching their son’s developmental pathway increasingly diverge from that of his peers; they are watching him drift away from them during the period of time in his life when his brain will be the most receptive to intensive intervention.

Stories like Lewis’ are playing out in every school system across the state, and across the country. They are the direct result of the financial strangulation of the public education system. Officials will deny that funding cuts impact special education services because they have to maintain that fiction in order to comply with disability law, but behind a wall of Orwellian doublespeak about failing students making “effective progress” the reality of inadequate support for students like Lewis is plain.

“Disconnection” is also a word that would describe legislators who pass budget measures that have the ultimate effect of slashing funding to cities and towns. They are disconnected from the human cost of their decisions and from the message that is embedded in their votes: that we know how to help our most vulnerable children, but that we are just not willing to pay to do so.

Odd Man Out

April 11, 2011

I first saw “Walter” (not his real name) sitting in the clinic waiting room, slumped to the side, with his head resting on the arm of the couch. He was completely motionless but his eyes were open wide. For some reason he struck me as nothing so much as an alien who had found himself in an odd and incomprehensible world and despaired of ever finding his way home. Walter was depressed, and the reason for it was clear. He had a life-long developmental disorder that made it very difficult for him to understand and engage in social interactions. As a result, he had become increasingly isolated over the years until he was entirely without friends in high school.

This is not an unusual experience. A study last year (“Bullying and Ostracism Experiences in Children with Special Health Care Needs”; Journal of Developmental and Behavioral Pediatrics; Kimberly Twyman and colleagues) found that students with a range of learning and developmental challenges were significantly more vulnerable to social isolation and to being bullied than were other children. The vulnerable group encompassed kids with learning disabilities, ADHD, mental health disorders, and autism spectrum disorders.

These kids often fly under our radar. To a large extent, peer social problems often seem like something that “just happen”. Most of us remember feelings of loneliness and fear of bullies from our own childhoods, and these experiences come to seem like normal rites of passage. It’s an issue addressed in a recent study called “Empathy Gaps for Social Pain: Why People Underestimate the Pain of Social Suffering” (Loran Nordgren and colleagues, Journal of Personality and Social Psychology). In a series of studies the authors found that we tend to underestimate the emotional pain experienced by someone being excluded in our presence, and that we also tend to remember our own experiences of exclusion as being less painful than they actually were at the time. They also found that middle school teachers who underestimated the pain of ostracism tended to intervene less intensively in instances of bullying among students.

There was a time in the history of psychology when we underestimated what it meant for a child to lose the supportive environment of their family. Parents were seen primarily as sources of physical needs – food, warmth, etc – not in terms of emotional connection. It was partly through observing children who had been separated from or neglected by their parents that psychologists came to appreciate the true nature of the desire that children have for parental attachment as a basic, primary, “real” need in itself, more vital even than the material needs of existence.

In some ways, I think that our current perception of the need that older children and teenagers have for peer acceptance and belonging mirrors the attitude that earlier generations had towards the need that babies and young children have for parental acceptance and love. We view it with a certain degree of condescension – if it is there, great…but if not, no big deal. It’s an attitude highlighted by the “empathy gap” in the Nordgren study. The reality, though, is that the peer group serves a function very similar to that served by the family earlier in life. In early childhood the family (at a minimum, the relationship with a consistent caregiver) provides the solid ground for a child to stand on. It’s a petri dish where a child’s confidence in themselves and in the world as a reliable, basically positive place can grow.

The same thing needs to happen later, on a larger scale, within the peer social environment. Children and adolescents need to see themselves reflected back in their peer’s eyes as interesting, and attractive, and fun…just as they needed to see themselves in their parents eyes as both lovable and capable. When that doesn’t happen, they often wind up like Walter…sinking into depression, withering like a plant not potted in nurturing soil.

There’s no single answer for kids like Walter. In his case, he transitioned to a private school for students with diagnoses similar to his where he met kindred spirits and began to thrive. Many cases, however, have less happy endings. The lesson from the research, however, is that we need to be vigilant for two things. First, we need to watch for the ostracism and bullying that so often plays out right under our noses. Second, we need to be aware of our own blind spots around this issue, our own tendency to underestimate the pain that these kids feel and to minimize the emotional impact that it has on kids as they develop.