This is a speech Patty wrote for the 2003 MAAP conference in Indianapolis about Sensory Issues. Both Patty and I (Jared) thought it was her greatest talk. She had great difficulty writing the speech, as her health was suffering, and it was determined she needed a heart stent, a week before she was scheduled to give the speech, so Jared gave it for her. This collaberation is one example of the great relationship between them - The speech was written by Patty, Jared helped Patty with organizing her ideas and a little editing, but all of the words come from Patty.
PATTY’S sensory story is about way too much input, with little or none of it making any sense to her. She spends most of her time rerunning in her mind whatever she just heard, saw or felt. She tries to figure out what it means, unable to fend off the sensory bombardment that continues to attack. It feels like sand avalanching into a ditch, with her trapped at the bottom.

In school, she seldom understood the teacher’s spoken instructions. She felt lucky discovering in first grade that she could ask most any other child what they were supposed to be currently doing. The other children knew, of course. With a little help from classmates, she managed to look mostly "normal" most of the way through school. She was also gaining skill in covering up so that her secret massive confusion wasn’t obvious to the teachers. Of course, this kept her "general confusion" problem from ever being diagnosed. She covered up her disability so well that she was often criticized for "not living up to her potential." She learned to believe this herself that she wasn’t trying "hard enough" to be her true excelling self.

At some point in childhood she began bashing her head against walls. It was the only thing she knew to do that overrode the wretchedness of being a constant disappointment and failure to teachers, parents and herself. The contradiction between her intelligence and inefficiencies never occurred to her. Kids who were not keeping up in the classroom used to disappear into Special Ed and never be seen or heard from again. That felt very ominous, and she struggled to avoid having that happen to her.

Her parents ignored her head banging as "attention seeking," and also encouraged her to not communicate her needs. Her needs and demands were considered irrelevant and extravagant. As a result, she didn’t learn self-advocacy. She was bashing her head so badly at the age of 45 that she couldn’t stand to have anyone touch it, and couldn’t lay it down at night to sleep. However, the endorphins released by the pain kept her from feeling suicidal. No one realized that the head banging was a sign of sensory overload.

Many sensory nightmares take place while shopping at WalMart, driving in rush hour traffic, dinner table conversation for an hour, being in any noisy room, and most any other place you can think. Some of these sensory problems are:

The first step in dealing with TOO MUCH sensory input is to be able to control at least part of the input. Effective control keeps incoming sensory channels from being used up. High quality hearing protectors do a good job of keeping out all sounds that are not in the range of human speech. Polarized lenses keep glare down. Patty wears a wide-brimmed hat to keep the glare from overhead lights from hitting her glasses.

Patty has worked for brilliant people who easily correlate their sensory input into total sense. She feels stunned admiration when she watches these people at work. It feels a bit like visiting a fine art exhibit -- watching a mental giant working effortlessly to keep track of all details inside the framework of the whole.

When the sensory input is overwhelming OVERLOAD strikes. The extreme case of overload is shutdown, a mental blankness and inability to react to the situation at all. During a conversation or hearing instructions she may become unable to understand language. She may feel physical sensations that are similar to pain, such as buzzing muscles, dizziness, nausea, and panic.

Her habit of hiding her neurological problems means that she is always working at full speed in a desperate race to keep people from noticing that she is actually slow. Her intelligence and phenomenal memory give her the ability to run and rerun scenes and conversations in her head. This allows her to fill in the missing information and get some idea of what they "mean". It can take Patty hours or even days to catch up with the processing in her brain and feel OK again.

After thinking deeply about this recently, she thought she had made a great discovery. It seemed to her that her cluelessness with sensory input and processing added up to a kind of "Global Dyslexia." She defined that as her inability to recognize the pattern of the whole from looking at the pattern of the parts. When she tried to discuss this online, someone "kindly" let her know that she had not discovered a new thing after all. This problem is called "central coherence deficit," and is one of the characteristics of Autism Spectrum Disorders.

To conclude she thinks the most difficult part of being a "high functioning autistic" is knowing how difficult and elusive success is in spite of her "high IQ". In her case, the coping strategies she learned as a child, and still retains as an adult, turned out to be poor techniques for coping with adult life. This is why it’s so important to identify the specific disabilities in young people. They can then receive appropriate help, rather than covering up their disabilities.

Copyright © 2003 Patty Clark and Jared Radin