Category Archives: Autism

The Autism and Multisport Project (AMP)

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I recently published an essay about my son’s experiences with his first multisport race.  He is autistic and the experience, for him and my family, was transformative.  This essay has gotten a warm response.  Zachary’s experience with multisport is, of course, not unique.  In fact, I would argue that triathlon and related endurance sports, such as running, are uniquely well-suited to inclusion.

Our own dignity and humanity are reflected in how we treat those who are disadvantaged.  I have personally witnessed beautiful acts of kindness and generosity at countless triathlons and marathons.  Sometimes, this brings me to weep even as I struggle with my own, rendered meaningless, discomfort, as I race.

I am interested in putting together a collection of essays about autism and triathlon and other endurance sports.  Perhaps this could be made into a book, with the proceeds going toward promoting inclusion.  For example, these proceeds could fund volunteers or adaptive bicycles.

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Please share your thoughts and experiences.  If you can, please share in this blog, drbriansmart.com, so that it is easier to organize.  Also, if you have friends or family who may be interested in such a project, please spread the word.

Autism And Multisport: My Family’s Experience With The Grand Rapids Triathlon Splash And Dash For Kids

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On June 13, 2015, my five kids participated in the Grand Rapids Triathlon’s kids’ event: the Splash and Dash.  I have four 11 year old daughters (that is another long story) and they did great.  They participated in a kids triathlon a couple years ago, on a cold and rainy day, and had, amazingly, a good experience.  However, for my son, who is autistic, this was his first race.

As the parent of an autistic child, I have been through countless episodes with Zachary in which he has a sudden, unexpected, unchangeable aversion to something that he normally enjoys. This can lead to screaming, flopping on the floor, or other challenging behaviors which can seem, to me, so contrary to logic. Well, my son has his own logic, and I have come a long way in learning about it.  Sometimes, it is best to just not push when he decides he cannot do something, but this was an experience I really wanted to go well.

Zachary is 7 years old and has been taking swimming lessons for several years.  Nonetheless, I was concerned that he would be unable to swim the required 50 meters for the race.  So, before registering him, I contacted the race officials with my concerns.  Their response was very helpful: “don’t worry, we’ll get him across the finish line.”

A few days later, I was contacted by another organizer of the race.  He gave me his personal cell phone number and asked me about specific accommodations that Zachary would need to have a good experience.  Aside from wanting Zachary to feel good about himself, I was also concerned that he would create a distraction that would take away from the enjoyment of other kids in the race.  So, we discussed, in detail, how Zachary could swim a shorter distance, start in a different lane, and start before the other kids.  After the swim I was hoping he could get some help finding the transition, putting on his socks and shoes, and starting the run.  We expected that other kids would overtake him by the time he started the run and it would then be easy for him to follow along.

On the morning of the race, the kids were all excited, but especially Zachary.  It was about a 45 minute drive to the race start and Zachary was singing the entire way.  His sisters played on their phones…

Here is the crew before the race:

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And the kids with me:

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After the National Anthem (sung beautifully by a race participant), we all headed to the pool. Zachary was just stoked!

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But…then it was time to get in the water.  He panicked.  My heart dropped.  There were only about 20 kids participating, including mine, so we were not imposing upon a large group of people, and the race was not timed, so there was some flexibility.  But I so wanted Zachary to have this experience.  Triathlon has changed my life.  I cannot say if any of my kids will become regular participants in triathlons, but I want them to understand and value the experience.  A splash-and-dash, which is only a swim and run, is the simplest way for a child to experience a multisport event for the first time.

One of the lifeguards then got into the pool, and encouraged Zachary to get in with her. Everybody was cheering.  He got in!!!  Look at the smile on his face!

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After the swim, Zachary was directed (escorted) to transition.  Another volunteer helped him put on his socks and shoes.  It didn’t appear that he would be able to navigate on his own, so a volunteer ran the entire route with him.  Such nice people.

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The pair made it around the course.  I could see that he needed a lot of encouragement and redirection to reach the finish line.  But look at the joy on his face as he finished!

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As it turned out, Zachary finished before his sisters.  It became his job to hold their “gold medals” to give to them as they crossed the finish:

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Here are the girls as they finished.  They all swam and ran pretty hard and complained (a lot) of being tired and, even, nauseated, at the end.

Audrey:

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Madison:

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Ella:

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Isabelle:

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This was a nice, friendly, well-organized race.  It was unfortunate that more kids did not participate.  It was a cool morning (60 degrees) and had been raining, so the weather had something to do with participation.

This race was a nice experience for all my kids.  I am particularly happy that my son was able to participate in a way that preserved his dignity as a human being and allowed him to experience the joy of athletic achievement.

Savant Syndrome And Autism: A Parent’s Perspective

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My son, Zachary, is autistic, but does not appear to have any special “savant” abilities.  This is fine with me.  He is a great kid and doesn’t have to have special abilities to be a good person who loves and helps others.  But the issue of “savant” raises interesting questions.  What are savant abilities, how often do they occur, why do they happen, and, perhaps most importantly, how should we as parents of autistic children respond to the presence or absence of these abilities?

What are savant abilities?

Savant abilities are special talents.  They are often imagined as astonishing abilities in counting objects in jars, calculating dates on calendars, perfect pitch, etc. in the setting of an individual who may otherwise be quite intellectually or socially disabled. A good definition, by Darold Treffert in 2009 is as follows:

“Savant syndrome is a rare, but extraordinary, condition in which persons with serious mental disabilities, including autistic disorder, have some ‘island of genius’ which stands in marked, incongruous contrast to overall handicap.”

One of the first accounts of an autistic savant was of Thomas Fuller, in 1789.  This individual, who was ”an African slave living in Virginia,” “could comprehend scarcely anything, either theoretical or practical, more complex than counting,” but had amazing powers of calculation. For example, when asked how many seconds a man had lived who was 70 years, 17 days, and 12 hours old, he gave the correct answer of 2,210,500,800 in 90 seconds and even corrected for the 17 leap years the hypothetical man had lived.

The most famous autistic savant is the fictional character, Raymond Babbitt, from the 1988 movie Rain Man.  However, as is so often the case, truth is more interesting than fiction.  The individual who inspired the Raymond Babbitt character is a man who, as of 2008, had memorized over 6000 books and has encyclopedic knowledge of numerous areas of expertise, including geography, music, literature, history, and sports.

Savant skills usually occur in a narrow range of special talents.  These skills are in five general categories:

  1. Music: usually performance, most often piano, accompanied by perfect pitch.
  2. Art: usually drawing, painting, or sculpting.
  3. Calendar calculations.
  4. Mathematics: this includes lightning-fast calculations or the ability to compute prime numbers.
  5. Mechanical or Spatial Skills: this includes the ability to measure distances precisely without the benefit of instruments, the ability to construct complex models or structures with amazing accuracy, and the mastery of map making and direction finding.

These special skills are always accompanied by a prodigious memory that is characteristically very deep but also very narrow, within the confines of the individual’s special skill.

There is also a spectrum of levels of savant ability. The most common presentation of savant abilities are people who present with so-called “splinter skills.”  These skills include obsessive preoccupation with, and memorization of, subjects such as music and sports trivia, license plate numbers, maps, historical facts, or more obscure things like unusual sounds.  “Talented savants” have such special abilities that would be very conspicuous when viewed in contrast to their overall disability.  Finally, “prodigious savants,” who are very rare, have special abilities that would be viewed as outstanding even in a non-impaired person.

It has become a kind of intellectual game for some people to try to guess which famous individuals from the past, such as Sir Isaac Newton, or the present, such as Bill Gates, may have autism as the explanation for their exceptional talents.  Recently, the comedian Jerry Seinfeld briefly stated, then retracted, that he was autistic.  Perhaps the attraction of savant abilities is the possibility of having some aspect of ourselves that is super-human.  Perhaps the attraction is akin to the public’s fascination with magic.  Whatever the explanation, savant abilities are an intriguing aspect of autism.

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How often do savant abilities occur?

It is generally accepted that approximately 10% of autistic individuals have savant abilities. However, there is a recent study that places that figure at almost 30%.  Males with savant syndrome outnumber females by about a 6:1 ratio, which is even higher than the roughly 4:1 ratio by which males outnumber females in the diagnosis of autism.  Down (famous for Down’s syndrome) in 1887 coined the (now highly offensive) term “idiot savant,” to signify that individuals with savant abilities also had IQs below 25.  It has been since learned that almost all cases of savant syndrome occur in people with an IQ higher than 40.  In fact, some autistic people with savant syndrome have high IQs.  Hence the more appropriate and dignified term that has arisen: “autistic savant.”  However, savant abilities are not unique to people with autism.  In fact, it appears that about 50% of people with savant abilities have autism while the other 50% have other disabilities.  For example, approximately 1.4 per 1000 people with IQ below 70 have savant abilities.  There are also reports of previously healthy elderly people with fronto-temporal dementia who develop savant abilities. Since half of people with savant abilities are not autistic, the most accepted term now for people with these abilities is “people with savant syndrome.”

Why do people with autism develop savant abilities?

There has been a great deal of scholarly discussion about why savant abilities occur.  The most accepted theoretical explanation at the current time is the concept of veridical mapping (VM). This is defined in a recent paper by Bouvet et al:

“VM is a capacity to detect regularities within and across isomorphic structure (i.e., structures sharing perceptual or structural similarity), at multiple scales. The materials involved in savant abilities are often structured human codes (e.g., written arithmetical, and musical structures) which are also multi-level and redundant (i.e., sentences composed of words composed of letters, songs composed of melodies composed of notes, years composed of months, composed of days).  These materials exist across multiple scales, from very low-level or simple to very high-level or complex, and can be seen as highly isomorphic.”

An example of this is the account of a child with autism who could make amazing estimations of weight, height, and distance.  He reported that he estimated weights, for instance, by using the known weight of a cereal bar and extrapolating.

But veridical mapping has a context.  People with autism and savant abilities have to cultivate these abilities with practice.  Personality features, like detail-focused attention and memory, predispose to the development of savant abilities.  Some authors have suggested that “superior sensory acuity across modalities” underlies this focus on details.  This superior sensory acuity, in turn, leads to the tendency to be interested in, and to master, closed systems like the calendar.

Another theory to help explain savant skills is the “enhanced perceptual functioning theory.” This theory suggests that “locally oriented processing and, specifically, detection of patterns in the environment, underlies the high incidence of savant skills in autism.”  An individual with a bias toward locally oriented processing would excel at focusing on, and perceiving, minute details of an object or a situation (e.g. picking a face out of a crowd), but would be less adept at global processing (putting together piecemeal information to make sense of something).

What does savant syndrome mean to parents of autistic children?

Please let me begin this discussion by stating the obvious: I am one parent of one autistic child. My opinions may not be appropriate for other children on the spectrum, for other parenting styles, or for other cultural contexts.  Please share your comments!

In reading through the discussion, above, of savant syndrome, some parents of children on the autism spectrum may wonder “does my child have an unknown talent?  Have I failed my child by not helping to identify such a talent?”  Or maybe “wouldn’t it be cool for my child to have a savant talent?”

My impression is that people with savant talents have ample opportunity, just as any other children, to identify subjects they enjoy. I don’t think parents of children on the spectrum have to put advanced-for-age books in front of their kids, followed by complex mathematical questions, then maps, then musical instruments, and so on.  Let kids be kids.  When an autistic individual has a special talent, with the focused personality that is so typical of autistic individuals, everyone will soon know that this talent exists.

Some parents may be motivated to hunt for savant abilities in their autistic children for the novelty of such abilities. My strong opinion is that this approach is more about the parents’ interests than the child’s.  It leads to situations in which the autistic child is brought before an audience of family or friends to demonstrate his or her talent.  This robs this child of his or her dignity; children are not dancing ponies.

On the other hand, there may be real benefits to fostering special skills.  Learning to play music, for example, has benefits toward social integration and personal growth for many people with autism. Furthermore, some savant talents, especially artistic ones, can develop over time from being descriptive or repetitious to becoming truly creative.

Another author’s view about fostering special talents is that training them becomes “a conduit toward normalization, using the unique savant skills to achieve better socialization, language acquisition, and independence.”  The special skills can be used to engage the attention of the individual with autism with the goal of channelling these skills more usefully.

Savant syndrome remains intriguing and incompletely understood.  It also creates interesting, complex questions for parents of children on the autism spectrum.  Once again, I invite you to share your comments and experiences.

References:

Bouvet L, Donnadieu S, Valdois S, et al. Veridical mapping in savant abilities, absolute pitch, and synesthesia: an autism case study. Front. Psychol. 2014 Feb;5(106):1-10.

Happe F and Frith U. The beautiful otherness of the autistic mind. Phil. Trans. R. Soc. B. 2009;364:1345-1350.

Howlin P, Goode S, Hutton J, et al. Savant skills in autism: psychometric approaches and parental reports. Phil. Trans. R. Soc. B. 2009;364:1359-1367.

Salovitta T, Ruusila L, Ruusila U. Incidence of savant syndrome in Finland. Percept Mot Skills. 2000 Aug;91(1):120-122.

Treffert DA. The savant syndrome: an extraordinary condition.  A synopsis: past, present, future.  Phil. Trans. R. Soc. B. 2009;364:1351-1357.

Photo Credit: N00/2116859844/”>rkimpeljr via Compfight cc

Autism Genes And Higher Intelligence

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A study was published on March 10, 2015 about the relationship between genetic risk factors for autism spectrum disorder (ASD) and intelligence.  This reflects the impression that some people with ASD may have areas of superior intelligence (the so-called “Silicon Valley Syndrome”).

In this study, polygenic risk for ASD (and also for attention-deficit hyperactivity disorder – but this is not being summarized in this article) was calculated from genome-wide association studies of ASD that were conducted by the Psychiatric Genetics Consortium.  In a cohort of 9863 people, the polygenic risk for ASD was positively correlated with general cognitive ability (i.e. intellectual ability was higher).  The specific areas in which individuals with polygenic risk for ASD were superior were logical memory, vocabulary, and verbal fluency.  This was replicated by these researchers in another cohort of 1522 people, in whom individuals with polygenic risk for ASD had higher full-range intelligent quotient (IQ).

These results, however, do not show that the genes for ASD create geniuses.  The differences in cognitive scores between the individuals at polygenic risk for ASD and those who did not have this risk was small.  The genetic risk scores explained less than one half of a percentage (0.5%) of the variation in the scores on cognitive tests.

This study also does not address the question of intellectual ability of people with ASD.  Instead, it shows that the same genetic milieu that is associated with ASD is also associated with higher cognitive scores.

This study can easily be over-interpreted.  But it may be taken to show that ASD, for some individuals and their families, can be a gift as well as a challenge.

Reference:

Clarke T-K, Lupton MK, Fernandez-Pujals AM, et al.  Common polygenic risk for autism spectrum disorder (ASD) is associated with cognitive ability in the general population.  Molec Psychiatry 2015 March 10;epub ahead of print.

 

My Autistic Son And The Kindle-Swallowing Elevator

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Today, my article is unrelated to science or endurance sports.  Instead, the subject is family. Specifically, my son, who is “high functioning” autistic.  Zachary is cute, sweet, loving, and funny 98% of the time.  The other 2% of the time he is a stubborn, frustrating boy.  This 2% is sometimes predictable.  An example of this 2% is his day a couple weeks ago when his usual teacher was not at school.  That day culminated in him lying in the middle of the hallway at school screaming for 15 minutes.  Sometimes, however, Zachary has completely unpredictable moments.  Such a moment was last weekend.

Zachary goes to gymnastics every week.  This is in part for the physical therapy-like benefits of gymnastics, in part for the socialization benefits, and, in large part, just for fun for him.  He had just had a nice morning in gymnastics.  One of his sisters’ gymnastics class goes for 45 minutes longer than Zachary’s, so he typically sits on a couch upstairs in the building playing with his Kindle for Kids (officially a Kindle Fire HD Kids Edition).  When it was time to get his sister, Zachary insisted on riding the elevator down from the second to the first floor. Anyone with a child on the autism spectrum will identify with the intense need in their children for repeated, almost ritualized, activities.  The elevator, after gymnastics, is such an activity for Zachary.

On this day, Zachary made up his mind he did not want to leave the elevator.  Finally, after a great deal of arguing, he finally did get out of the elevator.  Somehow, in the process, the Kindle fell out of Zachary’s hand.  Wouldn’t you know it?  The Kindle did not just fall out of Zachary’s hand but through the narrow space between the elevator car and the floor of the building.  That’s right, Zachary’s Kindle ended up at the bottom of the elevator shaft!

My son has a history of sudden, unexplained moments of pique.  Example of this include throwing his great-aunt’s remote control off a balcony (it broke and I had to find the one online supplier in the country, in Texas, from which to buy a replacement), knocking bowls off counters into garbage cans, and pushing his sisters (who are amazingly kind and patient kids).  But this episode was different.  He adores his Kindle and I can’t imagine him intentionally damaging it for any reason.  Furthermore, what kind of aim would be required for Zachary to purposefully throw his device between the elevator car and the floor of the building?  The space is only slightly wider than the Kindle, itself.

As his parent, I was filled with a range of emotions.  Anger that he should throw a fit over something so silly, which, in turn, led to the loss of his Kindle (no matter how unlikely it would be that it would disappear down the elevator shaft).  Amazement and disbelief that the Kindle really went down that space.  Shame that my son could throw such a public fit, which, in turn, would require involving a number of people to try to save or replace the Kindle.  Frustration that, in spite of years of therapy and in spite of being the best parent I can, he still has these unexplainable and uncontrollable fits.  Sadness that Zachary will not have access to this device, which has been a nice source of education and entertainment for him.

A couple days later I communicated with the manager of the gymnastics center.  I was told that the Kindle for Kids would be very difficult to retrieve.  In fact, I was told that the elevator company would charge me much more than the value of the Kindle just to come out and look at the problem, let alone the cost of attempting to rescuing the device.

So, I called customer service at Amazon, the company that makes and sells Kindles.

“Um, I have a story for you that you may not believe.  You see, my son loves his Kindle.  He is autistic and it has been great for him.  But…somehow he dropped it down an elevator shaft a couple days ago and I just learned from the facility manager that it would be very difficult to retrieve.  Help.”

The customer service person was amazingly nice and surprisingly patient with my bizarre story. She then had me speak to her supervisor, to whom I relayed the same story.  Finally, Amazon, very kindly, helped me to replace Zachary’s Kindle.  This was just wonderful customer service.

I waited until today to surprise Zachary with his replacement Kindle.  I have been able to spend the entire day with him and I wanted to connect the return of this device to good behavior. Finally, I wanted him to understand that people, including me, Amazon customer service, and the staff at the gymnastics facility, all worked on his behalf to help him.  Zachary just wrote a thank you letter to Amazon.

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“Dear Amazon,

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I love my Kindle!  Thank you.  You helped me.

Yours truly,

Zachary”

I hope this experience has taught my son some important lessons about behavior, consequences, and thankfulness for the things he has and the people who help him.

Uh oh!  I just heard Zachary behind me saying “look Daddy, I’m an elevator shaft!”  Here he is pretending to be the Kindle-swallowing elevator shaft.  I guess my work is not done…

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Published Valentine’s Day, 2015