What Matters: August 2003
Understanding Our Gifted and Complex Minds: Intelligence, Asperger's Syndrome, and Learning Disabilities at MIT
By Brian G. R. Hughes '77
My wife, Lissa Martinez '76, SM '80, and I first learned about Asperger's syndrome the hard way: In 1999, our then 13-year-old son was diagnosed with it. His diagnosis ended a search that had begun in the fall of 1992 when our son's principal informed us that we had a "peculiar child."
Our son's recollections are telling. He recently wrote about this period in his life:
"I thought I was stupid, because I was always getting bad grades, doing dumb stuff, or freaking out in a panic attack. I wasn't stupid, though...I've never been stupid. I could read "big kid books" when I was still in 1st grade, stuff for 5th and 6th graders. I'd taken an IQ test and scored as high as could be measured. For some reason, though, I, and others, still found myself a fool. "Wake up!" "Put down that book!" "Look at me when I'm talking to you!" "Are you listening to me?" "PAY ATTENTION!" These were the fences that divided me from my peers, the lines that defined the territory of my conversations with my teachers. I shrank further in to myself, an impressive feat of shame."
This was a very tough time for our family.
Asperger's syndrome is a neurological condition that is on the high functioning end of the autistic spectrum. It is characterized by problems with social skills, eccentric or repetitive behavior, communication difficulties, and limited (but nearly obsessive) interests. Asperger's sufferers also have high intelligence, exceptional focus, and extraordinary talents in one or more areas. (Read the WebMD description). To put it more simply, our son learns social skills with the same difficulty most people learn math, and he learns math with the ease that most people learn social skills. Our seven-year search for an answer was frustrating. The reason that Asperger's was not diagnosed immediately is stunningly simple—it wasn't added to the Diagnostic and Statistical Manual of Mental Disorders until 1994 when version IV was released.
More recently, the media has begun to cover the disorder and the challenging issues associated with it. The New York Times Magazine did a story in June 2000 calling it "The Little Professor Syndrome." A year later, Wired magazine called it "The Geek Syndrome."
Aside from anecdotal evidence that the son of two MIT graduates has Asperger's syndrome, why should this story be of interest to the MIT community? My hypothesis is that the "abnormal" condition known as Asperger's syndrome is remarkably similar to the "normal" functioning of an engineer's mind.
The moment that this became apparent to us is crystal clear. We traveled with our son to hear a lecture by Dr. Tony Attwood, author of Asperger's Syndrome: A Guide for Parents and Professionals. He made the following remarkable statement: "When I lecture at a university, I play a little game which I call 'Spot the Asperger's Professor,' unless of course it's an engineering school, in which case I play, 'Find the One Who's Not.'" Lissa turned to our table of parents and asked who had engineers in the family. We all did.
Last summer, during my 25th reunion, I chaired a panel in which a number of my classmates were to talk about our careers. I was not looking forward to this—I expected a somewhat egocentric discussion of great successes—visions of dot-com hubris danced in my mind. What happened was nothing like what I expected.
The first speaker, currently a leading figure in the MIT community, talked about how he could never hold a job. He was always getting into arguments about how things should be done. After a number of jobs, he found a solution that worked for him—he started his own company.
The second speaker, a classmate, began by telling us he had recently been diagnosed with Asperger's syndrome. He then proceeded to tell a painfully honest story of the trials and tribulations of his life. The next speaker talked about his successful career as a design engineer. He attributed his success to the fact that he thought in pictures: "When you say carrot, I can see it right here in front of me." I was reminded that Temple Grandin, the poster child for high functioning autism, titled her autobiography Thinking in Pictures.
When I was president of the Alumni Association from 1999 to 2000, I spoke with alumni around the world. After discussing my son with one alumna, she realized I was also describing her daughter. I then took the opportunity, in one-on-one conversations, to broach the subject of Asperger's. My very unscientific recollection is that about a third of the time the response would be, "That sounds like my nephew, niece, son, daughter, granddaughter, grandson, uncle, aunt..." This stood in stark contrast to the "normal" rate of Asperger's of about 1 in 250.
The number of undergraduate women at MIT has increased from less than 10 percent of the entering class in 1972 to 41 percent in the academic year 2002-03. The number of MIT couples has been increasing as well—just look at the class notes! These marriages lead to children, and apparently more often than would be expected we are having "extraordinary children." Some are "just" extremely gifted—a serious challenge for all concerned. Others combine their extreme intelligence with learning disorders (LDs). (This is an apparent oxymoron, but dyslexia and other LDs have nothing to do with IQ or attention deficit disorder). Still other children are like our son, extremely gifted, but with Asperger's. Sound familiar?
When I started working on this column, I wanted to introduce the data to back up my case. I visited the head of developmental medicine at Children's Hospital in Boston. He brought in two of his colleagues, and they very politely told me that there were no such data. The data had not been collected—yet. I asked if I was out of bounds thinking that Asperger's and engineering were some how correlated. Not at all they replied—they talk about it in the hallways all the time.
There is data; Steve Silberman reported in Wired that autism—and its milder cousin Asperger's syndrome—was surging among the children of Silicon Valley. Silberman wondered if math-and-tech genes were to blame. He noted, "The one thing that almost all researchers in the field agree on is that genetic predisposition plays a crucial role in laying the neurological foundations of autism in most cases. Studies have shown that if one identical twin is autistic, there's a 90 percent chance that the other twin will also have the disorder. If parents have had one autistic child, the risk of their second child being autistic rises from 1 in 500 to 1 in 20."
The stereotype of the socially underdeveloped nerd will not be unfamiliar to MIT alumni or anyone in the engineering profession. Kathryn Stewart, director of the Orion Academy, a high school for kids with neurocognitive disabilities in Moraga, California calls Asperger's the "engineer's disorder."
Silberman says, "It's a familiar joke in the industry that many of the hardcore programmers in IT strongholds like Intel, Adobe, and Silicon Graphics—coming to work early, leaving late, sucking down Big Gulps in their cubicles while they code for hours—are residing somewhere in Asperger's domain." It is worth pointing out here that the highest concentration of MIT alumni outside of the Boston area is in Northern California.
This raises some interesting questions that we as MIT alumni, and MIT as an Institution, need to think about. Asperger's syndrome, attention deficit disorder, learning disorders, and just plain giftedness affect members of the MIT community – alumni, faculty, staff and students. One alumna, Meredith Warshaw '79, has rearranged her life around this. She created Uniquely Gifted, a Web site of resources about gifted children with special needs, and made a mid-life career switch to start advising families with these twice-exceptional kids. She and fellow alumna Janis Bestul Ossmann '76 also started the GT-Special email list for families with gifted/special needs children when they found themselves in need of support and advice from other parents dealing with this perplexing combination.
Understanding what is going on here is a challenge worthy of our collective time and attention. We have a problem that is apparently a function of who and what we are—who better to tackle it? Some first steps are being taken by MIT's Department of Brain and Cognitive Sciences, which is collaborating with Children's Hospital's Developmental Medicine Center.
A late night conversation with Lissa cut to the heart of what really matters. The good news is that none of these conditions are fatal. However, raising our children is hard, so hard that it will change your life, and your career path. We have learned that asynchronous development does not mean no development. Keep on it and progress will be made.
Our challenge as parents is to raise our children right, to nurture their strengths (which are many) while supporting their special needs, and to enable them to be the best they can be. The lows may be a little lower, but the successes are all the sweeter. The adventure continues for our family and if the lessons we've learned can make your journey a little easier, so much the better.
So let's bring this discussion out into the open. I've taken the first step, now it's up to you. You can email me directly by looking me up in the Online Alumni Directory, write me in care of whatmatters@mit.edu, or you can visit the message board I've set up. It's time to talk.
Additional resources
Web sites
Asperger's syndrome
Attention deficit hyperactivity disorder (ADHD)
- Attention Deficit Disorder Association
- CHAAD Children and Adults with Attention-Deficit/Hyperactivity Disorder
- NIH Attention Deficit Hyperactivity Disorder
Gifted children
- The Hollingworth Center for Highly Gifted Children (Although this organization is now defunct, the information is still useful.)
- National Association for Gifted Children
- SENG is an organization set up to help support the emotional needs of the gifted
Gifted with learning disabilities
- ERIC Clearinghouse on Disabilities and Gifted Education
- GT-Special email list for families with gifted/special needs children. Moderated by Meredith Warshaw '79 and Janis Bestul Ossmann '76
- Uniquely Gifted is a website of resources about gifted children with special needs, including information on autism spectrum disorders, ADHD, learning disabilities, and special education law/advocacy. Created by Meredith Warshaw '79.
Books From Our Bookshelf
This is really just what is on our bookshelf and is by no means complete. You can see where we have focused our attention, and yes, we spent too long chasing ADHD as a diagnosis. Books are listed alphabetically by author.
Asperger's syndrome
Asperger’s Syndrome by Tony Attwood
The OASIS Guide to Asperger Syndrome by Patricia Romanowski Bashe & Barbara L. Kirby
Freaks, Geeks & Asperger Syndrome: A User Guide to Adolescence by Luke Jackson
Asperger Syndrome edited by Ami Klin, Fred Volkmar, Sara Sparrow
Autism
More Laughing and Loving with Autism by R. Wayne Gilpin
Thinking In Pictures by Temple Grandin
Without Reason: A Family Copes with Two Generations of Autism by Charles Hart
Son-Rise: The Miracle Continues by Barry Neil Kaufman
Autism–Asperger’s & Sexuality: Puberty & Beyond by Jerry & Mary Newport
Aquamarine Blue 5: Personal Stories of College Students with Autism edited by Dawn Prince-Hughes
An Anthropologist on Mars by Oliver Sacks
ADD/ADHD
A Parents Guide to Attention Deficit Disorders by Lisa J. Bain
Attention Deficit Hyperactivity Disorder by Russell A. Barkley
Taking Charge of ADHD by Russell A. Barkley
Help for the Hyperactive Child by William G. Crook
Driven to Distraction by Edward M. Hallowell & John J. Ratey
Answers to Distraction by Edward M. Hallowell & John J. Ratey
Gifted children
Multilevelness of Emotional and Instinctive Functions by Kazimierz Dabrowski
Raising Your Spirited Child: A Guide for Parents Whose Child is More Intense, Sensitive, Perceptive, Persistent, Energetic by Mary Sheedy Kurcinka
Annamarie Roeper: Selected Writings & Speeches by Annamarie Roeper
Keys to Parenting the Gifted Child by Sylvia B. Rimm
Learning disabilities
The Misunderstood Child: A Guide for Parents of Learning Disabled Children by Larry B. Silver
Other topics
The Man Who Tasted Shapes by Richard E. Cytowic
Smart Moves: Why Learning Is Not All In Your Head by Carla Hannaford
The Dominance Factor: How Knowing Your Dominate Eye, Ear, Brain, Hand & Foot Can Improve Your Learning by Carla Hannaford
The Island of the Color Blind by Oliver Sacks
About the Author
Brian G. R. Hughes received a Bachelor of Science degree in mechanical engineering from MIT in 1977. The highlight of his academic career was winning the 2.70 design contest in 1975. He serves as a member of the MIT Corporation and on the visiting committees for the Department of Aeronautics and Astronautics (chair 1996-98 and 2003-present), the Division of Biological Engineering, and the Departments of Nuclear Engineering (chair 2003-present) and Ocean Engineering. He was President of the MIT Alumni Association for 1999-2000.
In 1979, Hughes received an MBA degree from the Harvard Business School where he specialized in the management of technological innovation. After Harvard, he spent five years insuring spacecraft. Then, in 1984, he co-founded PTAT System Inc., which built the first privately funded transatlantic fiber linking New York and London; it was sold to Sprint in August 1989. Brian then switched back to the space business and ended up as CEO of the American Rocket Company, which vanished into bankruptcy in 1995.
In 1996, he moved to San Antonio with his wife, Lissa Martinez '76, SM '80 and began investing in early stage companies. Today he is chairman of HBN Shoe, which is licensing the Insolia Comfort System to high-heeled shoe manufacturers worldwide. He is also Chairman of Parivid, LLC, a bioinformatics startup.
What Matters is a guest opinion column written by a different MIT alumnus or alumna. The views expressed are entirely those of the author and do not necessarily represent the views of the Alumni Association or MIT. Interested in writing a column? Email whatmatters@mit.edu.
