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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. 

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.

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?

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.

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.

This morning I was trying to read the paper with a two-year-old clinging to my leg, begging for juice. It made me think about how hard reading can be and how many things can go wrong with it. The squiggly lines on the page come in through the eyes and travel to the visual centers in the brain, where they are recognized as letters and words. The info is then sent to the brain’s language centers where we make sense of the material based on all of the background knowledge stored in our memory systems. And for the whole thing to work, there needs to be an undercurrent of focused attention and energy.

It’s like a neurological chain reaction that turns a series of lines on the page into meaning. We need to figure out how to set this chain reaction off in our kid’s brains, because if we don’t they are going to be in a lot of trouble at school (and in life).

The problem is that a pretty large group of kids don’t experience this chain reaction as they start school. These struggling readers are at high risk not only for academic problems, but also for emotional and behavioral problems if they don’t get help on time.

The good news is that we know a lot about helping these kids. The bad news is that there are a lot of obstacles in our way, which brings me to two interesting studies.

The first is a paper put out by the American Academy of Pediatrics, the American Academy of Opthamology, and the American Association of Certified Orthoptists called “Learning Disabilities, Dyslexia, and Vision”. This addresses the question of which link in the chain tends to be broken when a child isn’t reading. It is a review of the research which concludes that the evidence supports the view of dyslexia as a language problem, not a vision problem…and that vision therapies for dyslexia are not scientifically supported. This is critical…the problem for kids with dyslexia is that they are not processing oral language in a way that allows them to make the leap to written language. The treatments that work for them are language based treatments.

There is a long history of claims that dyslexia is a visual problem. At one point, people thought that it had to do with letter and word reversals (and many parents of kindergarteners still worry about dyslexia when their kids write a letter backwards). Today, there is a large industry around vision therapy. Sometimes called “behavioral optometry”, these treatments focus on skills such as eye tracking. They compete with the research-based language therapies, confusing parents and teachers and making it difficult to decide which path to follow in helping a struggling reader. This can have the effect of delaying the start of good intervention, which brings me to the second study.

Published in the Journal of Special Education by Rolanda O’Connor and colleagues, this study was called “Responsiveness of Students with Language Difficulties to Early Intervention in Reading”. It looked at kindergarten students with language vulnerabilities and randomly separated them into two different groups. Both groups received good language-based treatment, but one group started in September and the other waited until February. Both groups benefited…but the students in the September group were twice as likely as the other students to turn into average readers in time for the 1st grade.

So what’s the take home here? Reading problems are language problems, and it’s incredibly important to treat these problems early! To do that, we need to do two things. First, we need to be really clear about what works and what does not, just like the AAP and their collaborators. Second, we can’t wait for these kids to fall behind in reading before we help them (which is exactly the way that the special education system too often works). We need to look for the early language deficits that predict reading disability and treat early. After all, knowing that 5 months can make such a big difference for kindergarteners helps us to understand why most readers who come into the 3rd grade lagging behind, stay behind.