Autism: Awareness Helps, But What We Really Need Is Knowledge

The author's 15-year-old son, Sam, after an orchestra concert.

The author’s 15-year-old son, Sam, after an orchestra concert. (Courtesy)

By Ilyse Levine-Kanji
Guest contributor 

April is autism awareness month. Awareness is great. But what really frustrates me and other parents of children with autism isn’t a lack of awareness but rather how little is actually known about the disorder.

For instance, there is no explanation about why the number of autistic children is exploding. Less than a month ago, the Centers for Disease Control released updated data about the public health epidemic of autism. The CDC found that for children born in 2002, the prevalence of autism is 1 in 68, and 1 in 42 boys. This new prevalence finding is roughly 30% higher than just six years ago and roughly 120% higher than the CDC’s findings in 2002 (1 in 150).

I’m incredulous that people still argue that the increase in the prevalence of autism is only due to better diagnosis.  Do we really believe that doctors and teachers 20 years ago simply didn’t notice the devastating symptoms presented by children affected by autism?

Equally frustrating is the lack of knowledge about the capabilities and inner lives of people with autism. When my son Sam was diagnosed at 26 months in 2000, we were told that a primary hallmark of autism is social disinterest and the desire to be alone. Now that Sam is 15, we realize that couldn’t be further from the truth.

Within the first minute of meeting Sam, you know that he is different. He likes to walk up to people he doesn’t know and rapidly blurt out: “What-is-your-name-and-when-is-your-birthday?” He can say this in an unexpectedly loud voice, with his eyes averted and his back or side facing the person he’s addressing, and maybe standing too close to — or too far away from — his intended “conversation partner.” Once the person answers, Sam often simply moves away, without acknowledging the response or following up in any way, leaving the person confused about the unusual interaction.

Connection

While Sam’s social interactions are often quirky and unexpected, Sam has a deep desire to connect with others. He is always willing to go to the grocery store or run errands with me, primarily because he’s excited to see who we will run into. People joke that Sam acts like “the mayor,” greeting everyone he sees by name and with an extremely enthusiastic fist bump. (Again, we were told that people with autism have trouble recognizing others, which also hasn’t been true for Sam.)

What is accurate is that Sam has tremendous difficulty communicating. He speaks in full sentences, but it is often a struggle for him to communicate his thoughts. One way that Sam compensates for this difficulty is that he painstakingly plans out what he is going to say to someone before he sees him or her.

Sam has many rehearsed scripts in his head that he pulls out depending on the person. One of his favorites is telling jokes that might be specific to a certain profession or situation. For instance, I think each of our town’s police officers now knows the answer to Sam’s joke “Why did the police officer go to the baseball game?” (Because someone was stealing second base.) Sam’s astounding memory helps him remember who has already heard each specific joke or story so that he doesn’t repeat himself.

I know that Sam isn’t alone in craving social opportunities despite his autism diagnosis. One of his friends likes to arrive early at school and hold the front door open, even during the freezing winter – just to be able to greet his fellow classmates and teachers. Sam’s high school has an active chapter of Best Buddies, where students with and without special needs “hang out” during structured activities twice a month. Sam is thrilled to be invited to his peers’ houses, and it’s heartwarming to see how the typically developing teenagers accept Sam for the sweet, happy, idiosyncratic person that he is.

Inner life

Not only were the experts mistaken about whether autistic people are interested in building social connections, none of the doctors we saw over the years ever suggested that Sam might have a rich inner life. However, now that Sam is older, my husband and I realize that Sam engages in a level of critical thinking and empathy that he’s previously been unable to express.

Sam’s special education English class read “The Glory Field” by Walter Dean Myers this year. Sam was devastated to learn about our country’s history of slavery. He sought reassurance that our family would never be separated and sold to the highest bidder. I struggled to answer his questions about how slavery and discrimination could happen to other human beings just because of the color of their skin.

As painful as these conversations were, they were also thrilling because I never imagined we could have them when Sam was younger —  when he needed an adult at his side at all times to ensure he didn’t run into the street or turn on the stove or rip things off the walls, and required intense hours of individualized therapy to teach him to put words together and learn the basic play, self-care and social skills most children simply “know” without being taught.

More than anything I’ve come to view Sam’s autism diagnosis as an inability to communicate. I know there is so much more going on inside his head than his outward appearance belies and I can’t wait for my beloved son to teach me more about himself as his communication abilities (hopefully) continue to increase. I look forward to a time when we are not only “aware” of autism, but actually understand it.

Ilyse Levine-Kanji lives in Westborough, Mass. with her husband and two sons and serves on the Westborough School Committee. Her Website is here.  

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  • ANB2013

    “I’m incredulous that people still argue that the increase in the prevalence of autism is only due to better diagnosis.”

    Ilyse, nobody seriously argues that the increase is due solely to better diagnosis, and the link you provide to another one of your opinion pieces contains no such claim. It does quote a CDC press release which cites “the way children are identified, diagnosed, and served in their communities.” That’s three main reasons. There are more.

    You also write “Do we really believe that doctors and teachers 20 years ago simply
    didn’t notice the devastating symptoms presented by children affected by
    autism?” And yet the lastest ADDM survey, which you either didn’t read or failed to understand, found that one in five children it determined has an ASD had no known autism diagnosis prior to the survey. Think about that – 20 percent of autistic children are either undiagnosed or misdiagnosed. So yes, it is entirely likely that, 20 years ago, a large undiagnosed / misdiagnosed population of autistic children existed in the US, because a similar population exists today.

    Incredulous you say? Methinks credulous is closer to the truth.

  • alaincouvier

    Medical research has been making enormous strides over the last couple of years in Autism research but it does not make the headlines or is often fragmented by other stories.

    We now know that Autism is “Autisms” thanks to the incredible work of Harvard researcher Issac Kohane. He identified four type or phenotypes of autism in children.

    The first driven by epilepsy / seizures subgroup prevalence 77.5% , a second by multisystem disorders including gastrointestinal disorders (prevalence 24.3%) and auditory disorders and infections (prevalence 87.8%),a third by psychiatric disorders (n = 212, prevalence 33.0%) and a fourth group could not be ‘resolved’.

    We also now know that as well as epilepsy/ seizures and GI disease driving autism there is an intricate relationship with the immune system , allergies and the gut microbes that live within us. Further research has begun to make us more aware of our man made environment, for instance pollutants effect the development and severity of ASD along the child’s lifespan.

    We therefore need to move on from simple descriptions and interventions in autism and recognize that it is a multisystem disorder in many many cases that needs a comprehensive approach by teams of medical professionals. This requires a sophisticated understanding of genes x environment and how the rise of autoimmune diseases, allergies and pediatric inflammatory bowel diseases which have also risen substantially within the same time frame as ASD are interlaced in neuropsychiatric outcome.

    Understanding these concepts and interactions listed above will lead to better quality of life for a large number of ASD children and adults as well as children suffering from related diseases / disorders.

  • adriant.esq@btinternet.com

    I suspect that when someone studies the historical prevalence of autism and aspergers in communities they will find that royally-bred savantism and arranged marriages for that purpose certainly since the Battle of Hastings and the rule of William the Conqueror, contained the incidence of autism and aspergers to such selective bloodlines that diagnosis and treatment became shamanic relying on traditional herbs, medicines, and treatments including hypnotic regression via Christian and neo-pagan trances, much like witchcraft is still practiced in the Cameroon to this very day as an adjunct of autism and aspergers
    Arranged marriages nowadays offend some people’s ideas about human rights, consequently they are dying out and the conditions are no longer confined in bloodlines as they were but the autism and aspergers genes are being splattered around as if there’s no tomorrow – so no wonder the incidence is spreading
    During the First and Second World Wars an additional factor began affecting the incidence, as National Service became a duty and a lot of auties and aspies found the prospect of killing other people did not fit their paradigms and they became conscientious objectors and attracted active eugenic ‘white-feather’ campaigns to cull their numbers as horrific as the Nazi attempt to cull Jews, Romanis, gays and mental patients. I went through hell at school in the UK due to this in the period 1949 – 1960, which is why I know about it
    But then a further additional kicked in with an unexpected vengeance that is yet being experienced – pregnant women started taking anti-depressives, side effects of which were underplayed by the big pharma that made fortunes from them and some of those side effects included increased numbers of users contemplating, attempting, and committing, suicide – I should know, my mother was one of them – so governments required these drugs to carry warnings – black label warnings I think they are known as in the USA but who takes notice of warnings if they only say they may affect you, not your baby – with the result that (a) there has been an epidemic in the rise of autism and aspergers births that matches the rise in use of anti-depressants; and (b) there has been an equally epidemic rise in the incidence in suicide ideation and attempts in children with autism and aspergers
    Get real people! You are giving your own children autism and aspergers and making them vulnerable to killing themselves but the medical profession, their insurers, and the big pharma, won’t let any reputable scientific source tell you that because you will nail them to the wall with manslaughter charges and claims for compensation

  • autismepi

    We now have two well done, prospective cohort studies linking prenatal acetaminophen (Tylenol, paracetamol) use to adverse neurodevelopment. Acetaminophen is the most common pharmaceutical used by pregnant women and given to infants. The first study, by Brandlistuen et al. 2013, found that children exposed to long-term use of acetaminophen during pregnancy had substantially adverse developmental outcomes at 3 years old. These included a 70% increased risk of behavioral problems and motor delays, as well as, double the risk of communication problems. The second study, by Liew et al. 2014, found that 7 year old children whose mothers used acetaminophen during pregnancy were at higher risk of ADHD like behavioral problems and hyperkinetic disorder.

  • Anne Dachel

    A once rare disorder is now so common that everyone knows someone with an affected child and no one in charge of health care can tell us why. There’s nothing a mainstream doctor can tell a new mother whose baby was born healthy and is developing normally so that her child doesn’t also end up on the autism spectrum by age two.
    The autism rate comes from studies of eight year olds, not eighty year olds. No one has ever found a comparable rate among adults–especially adults with severe autism whose symptoms are easily recognized. That simple fact should be scaring us all.
    WHERE ARE THE AUTISTIC ADULTS?
    Anne Dachel, Media editor: Age of Autism

    • bpatient

      Of course you know that doctors CAN explain this, but you reject the explanation because it doesn’t suit you since it doesn’t involve vaccines.

      Autism clearly begins in the womb, many months before the vaccinations that you blame for ASD. Children don’t learn to walk because you buy them new shoes, and kids don’t enter puberty because they move to middle school. Your naive belief in proximal causes for ASD has been refuted by the great weight of the evidence.

      Think about it. You’ve blamed thimerosal for an “epidemic of autism,” but removal of thimerosal from the pediatric vaccine schedule (legally mandated in California for children under three and for pregnant women) has been followed, not by a decrease in ASD, but by continued increases–and not only in California but in all the countries where it has been studied. You’ve long supported Andrew Wakefield’s hypothesis (“the widespread use of MMR immunization is a major determinant of the apparent (now substantiated) increase in rates of autism”) despite its complete and utter failure. You routinely post that children who developed seizure disorders in early life and progressed to autistic symptoms were injured by vaccines (the Holland EBCALA nonsense) although it has been clear for years that such syndromes are genetic and have nothing to do with vaccines.

      So what’s left? Too many-too soon has been similarly repudiated. What else you got?

    • bpatient

      “WHERE ARE THE AUTISTIC ADULTS?”

      As you certainly know (since you’ve discussed this work on your web site,) about one per cent of adults living in the community (rather than in institutions, hospitals, or other care facilities) in the UK have ASD. The authors concluded: “The lack of an association with age is consistent with there having been no increase in prevalence [of ASD] and with its causes being temporally constant. Adults with ASD living in the community are socially disadvantaged and tend to be unrecognized.” [Brugha TS et al. Epidemiology of mautism spectrum disorders in adults in the community in England. Arch Gen Psychiatry. 2011 May;68(5):459-65.]

      Why do you deny the existence of adults with ASD? Is it because their existence undermines your failed idea that vaccines caused an “epidemic” of autism?

    • lilady R.N.

      The autistic adults are all around you Anne Dachel, yet you refuse to acknowledge them, because it spoils your anti-vaccine narrative that vaccines are implicated in the onset of autism

      Your narrative is hobbled together junk science. Vaccines, the ingredients in vaccines, the timing and spacing of vaccines are not implicated in the onset of autism…or any other disorder.

    • jdonahoe

      Many of the Autistic Adults are out there in Residences. One thing that I have learned is that we were/are unprepared for individuals with autism to become senior citizens.

  • Anne Dachel

    This is how the new rate of one in 68 was announced—
    The Washington Post:
    “In a telephone news conference, Coleen Boyle director of the CDC’s National Center on Birth Defects and Developmental Disabilities, said the growing numbers could reflect both better identification of children with autism spectrum disorders and a growing number of intelligent children with autism.
    “‘It could be that doctors are getting better at identifying these children, there could be a growing number of children with high intelligence [who are autistic], or it could be both,’ she said.”
    A telephone news conference?
    Why wasn’t this critical news announced at a public news conference where reporters could ask questions and the American people could hear the answers?
    Where is the alarm? Where is any explanation from the people who get billions of dollars to be in charge of health care? Dr. Boyle can’t tell us why it’s happening. She can’t show us the adults at this same rate. Regardless, Boyle STILL says NO REAL INCREASE.
    Dr. Thomas Frieden, the head of the Centers for Disease Control and Prevention, was nowhere to be seen when the new numbers were released. Why didn’t he come out with this announcement? At least Dr. Julie Gerberding, the former head, would face the cameras when one of these leaps in the autism rate was released.
    Frieden’s lack of interest in what autism is doing to our children is mirrored by every other health official out there and all of mainstream medicine along with the major media outlets.
    Anne Dachel, Media editor: Age of Autism

    • bpatient

      Yes, in fact the experts continue to maintain that the apparent increase in the diagnosed prevalence of ASD is due to better case ascertainment. Do you really believe that the difference between the diagnosed prevalence of black children in Alabama and white kids in Utah is not related to issues of case ascertainment?

      Perhaps one reason that you disagree with expert opinion is that you trained to teach social studies to adolescents, while the people with whom you disagree devoted their adult lives to subjects related to determining whether or not there is a true increase in the prevalence of ASD.

  • Anne Dachel

    No matter how bad the numbers get, no official can explain it and no one is ever worried. The disorder with no known cause, prevention or cure is left as a mystery.
    The media allows them to do this. No one is ever held accountable.
    I recently finished writing the book, The Big Autism Cover-Up: How and Why the Media Is Lying to the American People, which will be released this fall from Skyhorse Publishing.
    http://www.amazon.com/The-Big-Autism-Cover-Up-American/dp/1629144460
    Anne Dachel, Media editor: Age of Autism

    • bpatient

      The disorder does have a known cause. It’s mostly genetic, with some apparent contribution from environmental effects long before birth.

      The increase in the apparent, diagnosed prevalence of ASD is explained by changes in case ascertainment related to changing diagnostic criteria, increased awareness, and diagnostic substitution and diagnostic accretion.

      Autism begins in the womb, long before the administration of the vaccines that you have long blamed for the condition. Naively attributing results to contemporaneous events isn’t useful: kids don’t enter puberty because they enroll in middle school; similarly, blaming vaccination for the development of ASD ignores the overwhelming weight of the biological evidence that suggests that autism begins in the womb.

      Recent research, according to the author of an important new study, “changes the direction of [ASD] research from postnatal to prenatal”: Dr. Eric Courchesne’s ground-breaking study showed that the brains of children with autism show defects that arise in the middle stages of fetal development. Other recent work demonstrates that the brains of individuals with ASD have undergone abnormal proliferation of neurons during fetal development, leading to a 2/3 excess of neurons in prefrontal cortex, and that gene expression during fetal development differs both qualitatively and quantitatively from postnatal gene expression—and prominently features ASD related gene networks. ASD is even associated with abnormal formations on the placentas associated with pregnancies that produced children with ASD. Environmental factors identified as drivers of ASD risk include maternal infection, maternal diabetes, preterm birth, short inter-pregnancy interval, prenatal exposure to air pollution, phthalates and pesticides, and inadequate intake of folate just before and just after conception. According to the authors of a recent ASD-related study of all of the 1.5 million children born in Denmark 1980-2004, “The difference in the recurrence risk between full- and half-siblings supports the role of genetics in ASDs, while the significant recurrence risk in maternal half-siblings may support the role of factors associated with pregnancy and the maternal intrauterine environment in ASDs.”

      These results add to the already-considerable evidence that autism starts in the womb; according to Professor Stanley Nelson of UCLA’s David Geffen School of Medicine, “The overwhelming set of data is that the problems are existing during [very early] brain development, probably as an embryo or fetus.” Professor Daniele Fallin of the Johns Hopkins Bloomberg School of Public Health stated the prevailing view of ASD: “If there is environmental risk or interaction with genes, it’s likely to either [occur around the time of conception] or very early in development in utero.”

      Meanwhile, anti-vaccine activists blame postnatal vaccines for events that took place before birth—that’s like blaming the physical and behavioral changes of adolescence on algebra.

      –Stoner R et al. Patches of disorganization in the neocortex of children with autism. N Engl J Med. 2014 Mar 27;370(13):1209-19
      –Willsey AJ et al. Coexpression networks implicate human midfetal deep cortical projection neurons in the pathogenesis of autism. Cell. 2013 Nov 21;155(5):997-1007.
      –Parikshak NN et al. Integrative functional genomic analyses implicate specific molecular pathways and circuits in autism. Cell. 2013 Nov 21;155(5):1008-21
      –Carpentier PA et al. Stereotypical alterations in cortical patterning are associated with maternal illness-induced placental dysfunction. J Neurosci. 2013 Oct 23;33(43):16874-88
      –Walker CK et al. Trophoblast inclusions are significantly increased in the placentas of children in families at risk for autism. Biol Psychiatry. 2013 Aug 1;74(3):204-11
      –Courchesne E et al. Neuron number and size in prefrontal cortex of children with autism. JAMA. 2011 Nov 9;306(18):2001-10

  • Anne Dachel

    It’s becoming overwhelmingly clear that officials don’t really want to address what autism is doing to our children. No one at the Centers for Disease Control and Prevention has ever called autism a crisis. “Serious public health concern” is the strongest language anyone there has ever used regarding autism.
    This is what has happened to the autism rate in this country.
    1980: 1 in 10,000
    In 1994 the definition of autism was broaden and the numbers increased dramatically.
    1995: 1 in 500
    2001: 1 in 250
    2004: 1 in 166
    2007: 1 in 150
    2009: 1 in 110
    2012: 1 in 88
    2014: 1 in 68
    Each time the rate was updated health officials automatically announced that it was no real increase–just better diagnosing/a broader definition. The definition was changed 20 years ago. Why does the rate continue to increase?
    Anne Dachel, Media editor: Age of Autism

    • ANB2013

      Anne, try as I might I cannot find a study from 1980 which shows a 1:10,000 prevalence for autism in the US. Which study are you citing? Keep in mind there was no such thing as an autism spectrum in 1980.

  • http://batman-news.com momofboywithautism

    I am very pleased to see this post on WBUR. I am a listener and big fan of WBUR.
    WBUR hardly acknowleded the new CDC announcement about the new autism rates. That to me is very, very disapointing. I expected outcry, discussion on every show, people calling, asking questions, mostly about the caouse. Instead, let’s go out tonight and watch the lunar eclipse.
    I guess I am expecting too much.

    • ANB2013

      One of the advantages of public radio is that more air time is given to stories like this, meaning the opportunity exists for listeners to learn, for instance, the difference between prevalence and incidence, or the meaning of case ascertainment. This story would benefit greatly by such a discussion.

  • Marie

    People like you, noticing the details that you do, help all of us in understanding and also embracing the talents and skills that we each bring to the world, whether we see each other as autistic or not.