Autism from the inside

January 8, 2008

—Nina Pierpont, MD, PhD

Temple Grandin, PhD, professor and author of Thinking in Pictures, was born autistic.  Dr. Grandin didn’t talk until 3½, and as a young child screamed, threw tantrums, and got stuck doing simple movements over and over.  Today, however, a third of the livestock in the US are handled in equipment and facilities she designed.

Autism is a “spectrum” problem, meaning that some children are more severe than others.  From the outside, we see difficulties with social interactions and communication, and patterns of interest that are unusual and fixed.  The problems are present from a young age.  Intelligence varies.  Autism may accompany mental retardation or giftedness.

Temple’s books, however, tell a different story.  They tell us what it’s like from the inside.  Temple describes what it felt like to have a disordered sensory system.  Noises irritated her.  Birthday parties were “torture.”  She reacted to the shock of noisemakers by hitting or throwing things.  She was “scared to death” of balloons popping, since loud noises hurt her ears “like a dentist’s drill hitting a nerve.”  When she was in college, her roommate’s hair dryer sounded “like a jet plane taking off.”

Touch also bothered her.  She started pulling away from her mother at the age of six months.  Later, she found hugs to be suffocating and distressing and would react “like a wild animal.”  Shampooing her hair or changing her clothes hurt.

On the other hand, smells and feeling things in her hands absorbed her, as did twirling on her swing or watching spinning objects.  She could do these things for hours, lost in her own world, even blocking out the irritating sounds.

At 2½ Temple started speech therapy.  Looking back, she sees that her experience with sound was mild compared to other autistics.  Others experience so much sensory scrambling that they can’t make sense of the speech around them.  Temple understood language before she could produce it, and remembers the frustration of “one long stutter” when she wanted to say something.  Her speech therapist and teacher deftly managed the amount of stimulation she could handle, taking her chin and making her look at them and repeat words, but not overloading her.  Once she learned to talk, Temple was less frustrated and her tantrums diminished.

Besides speech therapy, she was blessed by a governess who played actively with Temple and her sister.  She was not allowed to vanish into her own world.

In her teens, Temple suffered from crippling anxiety.  And then a miracle happened.  At her aunt’s ranch she saw how cows became calm when gently squeezed in a holding chute, while they got their shots or were branded.  She decided to try it for herself.  The experience changed her life.  First she panicked, then felt a flood of relaxation, a physical comfort she had never felt before from her over-wound sensory system.  Looking back, she writes that she would not have learned kindness and love without this experience of physical comfort.

Over the years, Temple invented many “squeeze machines” which she could get into to relax, and from there she became consumed by cattle chutes and the feelings and psychology of livestock.  She was blessed by teachers in high school (at a special school for gifted but unusual teens) who, instead of trying to change her interests, gave her the tools to pursue them.

Today, Temple still doesn’t understand people.  She misses social cues and doesn’t grasp complex emotions.  To relate to people, she uses rules she has figured out.  Life remains a challenge for her.  Growing older, her actions and voice have become less awkward and intrusive, while her empathy with animals, and her success in keeping them calm and uninjured, remain enormously satisfying to her.

Temple’s life embodied principles of good autism care before they were generally known.  She was intruded upon in pleasant, bearable, and challenging ways, day in and day out, and not left to her own devices.  This is like the well-known Applied Behavioral Analysis (ABA) techniques used by Early Intervention and BOCES for preschool autistic children.  Children with sensory over-sensitivity or scrambling are now routinely treated by occupational therapists to calm them and help them sort out the signals.  Medication, which Temple discovered well into adulthood, may be given earlier for the anxiety and fear that often accompany the sensory problems.

Temple Grandin was a pioneer, a courageous and determined individual who broke new ground in understanding this strange condition of neurological processing.  Lately, neuroscientists have been focusing their attention on an interesting class of nerves called mirror neurons, a newly discovered brain system critical to imitation and empathy.  Next time, I’ll take a look at malfunctioning mirror neurons and their role in understanding the mysterious world we call autism.