Lillian is an expert on the topic of neurotypicality because of her experience raising a child who is high functioning autistic. If you hear the acronym ASD, it refers to Autism Spectrum Disorder. The word "neurotypical" was coined by the neurodiversity movement to create a label for people who are not on the spectrum - a useful thing to do since the only other word would have been "normal," which has a number of inappropriate implications. The opposite of neurotypical is neuro-atypical.
Lillian jokes, "There is no normal, only undiagnosed."
Autism spectrum disorder is an umbrella term that helps people to obtain special services and accommodations. It covers a number of different named syndromes including Asperger's Syndrome, Angelman's Syndrome, and Rhett's Syndrome.
Fundamentally, it has to do with how a person responds to sensory input. She recommends a book called The Out-of-Sync Child. Lillian describes how her son used to touch things in order to confirm their existence. Some people on the autism spectrum are high-contact, in that they want to touch things a lot, some are medium-contact, which is "normal," and some are low-contact, where they can't stand sensory input. People on the spectrum are not necessarily antisocial, just overloaded.
Some people find that adaptive playthings help them cope with sensory differences.
What can be hard is getting information out about what a person on the spectrum is feeling. Lillian's son John is visual; he is not good at verbalizing what he needs but will draw the things that he is thinking about.
An adaptive skills trainer can give people strategies for interaction. Often of use are social stories, where you construct a story to create a map of expectation for a particular type of experience. This story functions as a map to certain kinds of social cues. Sometimes she would rehearse these stories with cue cards. Role-playing with adults provides an opportunity for practice in a safe environment.
Lillian gave us a list of stories featuring characters on the autism spectrum:
The Curious Incident of the Dog in the Nighttime by Mark Haddon
The Speed of Dark by Elizabeth Moon
The Girl with the Dragon Tattoo (and its sequels) by Stieg Larsson
Rain Man (yes, it's a book) by Leonore Fleischer
Beggars in Spain (and the Sleepless books) by Nancy Kress
With the Light (a manga) by Keiko Tobe
I added This Alien Shore by C.S. Friedman
Life as the parent of a child on the spectrum is very hard.
Che mentioned The Bridge as having an autistic female detective. Morgan mentioned that some believe the Twelfth Doctor to have autistic characteristics.
The "popularity" of ASD diagnosis has grown, and so we notice more people with these traits. Lillian explains that "there's a starter kit" of core symptoms, including delay in speech development and possible problems with receptive language skills.
Autistic people often know how to fake it because of the desperate importance of social success. The question can become "how far can this person (or character) go before someone spots a symptom"?
Sherlock is described (on the TV show, as played by Benedict Cumberbatch) as a high-functioning sociopath. Some of us wondered whether business and politics were especially well suited for people with lack of empathy. Lillian noted that people working in the ICU often have OCD or similar conditions that actually help them function successfully in that environment. She said "surgeons need to be able to cut into humans."
We spoke briefly about Temple Grandin. Her biography and nonfiction are great resources on the autism spectrum. She showed us you can live with this condition.
Mercury Rising apparently does a good job of portraying an autistic child. It is based on Simple Simon by Ryne Douglas Pearson. Simon carries an icon schedule in a ring binder.
It is important to note that the simplicity of communication often necessary with ASD masks complexity of thought.
In portrayals of autistic characters, people often pick out the glamorous, useful things but leave out the downsides. Fixations, for example, can last 2-3 months. Lillian mentioned that her son went through a phase of fascination with pagers, and would walk up to people and grab the pagers without warning.
Transitions are often difficult for ASD kids. This can be anything, including stuff we might notice, like a change of room color. Lillian makes sure all the clocks in the house are synchronized because if a particular time is set for a change of activity, John will pick the clock that gives him the greatest advantage.
Heavy-input people need stimulation, and so often they will provide it for themselves. Sometimes this helps with proprioception (defining the boundaries of one's own body). Lillian says John has trouble keeping apart the real and imaginary. She will have to remind him that cartoon characters are not real. He also struggles with diffuse awareness, such as the attention required to cross a street safely. He can also be literal-minded, which is a source of concern for her because literal-mindedness can be used against you.
Glenda mentioned that some scientists hypothesize that there is a timing component in the perceptual differences involved in ASD.
Lillian says that John perceives temperature differently. He respects the concept of "hot" but doesn't understand cold.
Kids with ASD are often given substitutes for self-stimulation, such as favorite objects like a security blanket. Repetitive motions such as hand-flapping, pencil or foot tapping can provide grounding for nervous tension. Looking someone in the eye can be overwhelming for some people with ASD, especially high-visual people. John used to have a compulsion to knock things off the table. Lillian describes self-stimulation as a compulsion. Angelman Syndrome, which involves a fixation on water, can be very dangerous for a child's health.
Constant attention must be paid to the management of sensory input. Some foods are not tolerated due to texture, or possibly taste.
Thank you to Lillian for joining us with your knowledge and for sharing so much about your life.
Here's the video:
#SFWApro
No comments:
Post a Comment