This is a separate post from my ‘Autism Dress, making of’ post because otherwise the posts would be too long. I have a lot to write because I learned a lot this summer. When I started out, I knew very little about Autism Spectrum Disorder (ASD). I had read several articles in the spring that described ASD as a disorder caused by broad tuning in the brain where neurons fire for a broader array of stimuli. An easy metaphor for broad tuning is when someone might read the letter b and d as the same letter (I have no idea if this is what occurs with dyslexia, to be clear). What’s interesting is that previously, people had believed the opposite - that those with ASD were people whose neurons didn’t fire as often as someone without the disorder. This meant the perception did a 180 - from thinking of someone with ASD as a ‘slow’ thinker, to thinking of them as someone overwhelmed by stimuli most people would find unremarkable.
ASD is a disorder that is hard to classify, since once you know one person with autism, you know only one person with autism. This ruled out representing autism by any one complete instance; I would need to find more general characteristics of the disorder to portray in my dress. To do so, I tried to develop a better understanding of the disorder by reading personal narratives by Temple Grandin, Donna Williams, and parents of autistic children. I also tried contacting people in the area and looking for people who worked with people who have ASD. I got lucky and was able to meet with Cathy Gott, the mother of a man named Danny Gott who has autism. They were nice enough to allow me to meet with them, and talk about my ideas for the dress. By this time, I had come to the conclusion that the best way to represent the disorder would be to stick to the sensory impressions, the overstimulation, and as I would later learn, understimulation that those with ASD live with.
From there I was connected with people at Autism Speaks (http://www.autismspeaks.org/)
Danny Gott - edited from memory*
-Sensorily, what is it like to have ASD?
I’m usually one-sided - so my right side is dominant, stronger, with better vision and hearing. Rough material like linen, wool (itchy sweaters) and sometimes buttons, zippers and tags in shirts used to be bothersome when I was little, but I’ve grown out of it. I have a harder time temperature regulating, and in general with body awareness. I can hear from several rooms over (it’s hard for anyone to keep a secret from me - especially 500 feet away), and I can smell from very far away. It’s not hard for me to filter sounds though, I can still talk if there’s ten people in hearing range. Any more and it becomes hard to hold a conversation. Fireworks used to be scary, but not anymore. Offensive words bother me, like curse words, and loud instruments are a sensory overload.
-What are some things that bother you?
I have anxiety about lots of things: graduation, big crowds, lightning, sudden blackouts, sharp objects (because they’re dangerous), loud horns, the dark. I try to hide my anxiety a lot because I don’t want to upset other people. Loud noises hurt like bee stings for me, and lightning storms are like a swarm of bees. I also don’t like when I’m not in the loop, when people talk as if I’m not there, and I feel ignored or unaddressed.
-What are some things you like?
Ok good things: video games, talking, writing stories, acting, animals (dogs), garnet (the color), and Italian food (pasta).
Cathy Gott
-What do you think are the most unrelatable parts of ASD? What aspects of working with kids who have ASD are more difficult than working with kids who don't have ASD?
Most unrelatable: Difficulty reading social cues, easily over-stimulated, difficulty expressing wants and needs.
-Are there any aspects of the disorder that you wouldn't have understood except by knowing someone who has ASD?
How sensitive they are, how much they do understand but just can't communicate it.
-What do you think is the most important thing to do for someone who has ASD?
To have loving, patient people around them who support and accept them.
-And just a personal question, because I've read various opinions about it - do you think that it is better for someone with ASD to change their behavior to adapt to society, or do you think that maybe society can learn how to adapt its attitude to those with ASD?
Great question - it's a balancing act. There are certain behaviors that need to be taught in order for them to function, but not being ashamed of who they are is very key - allowing them to express themselves & finding the beauty and joy that they bring to our world is so important - but I do think that they need to understand boundaries and rules so that they can be the very best they can be.
Harvey Rubin (from ACEing Autism) - edited from memory*
-Do you think that ASD is truly a disorder, in that it impairs those who have it?
Oh yes, the biggest problem with autism is the lack of human connectivity - be it eye contact, inability to converse, to be touched, etc.
-In working with so many kids over the years, how would you say autism affects someone?
Hard to say because it affects each individual differently, but the underlying personality is always intact. So autism shapes itself around the personality.
Dr. Estie Hess - edited from memory*
-Would you say that those with autism are sensorily hypersensitive? What would you say are some typical behaviors in autism (particularly clothes-wise)?
Well no, because there are kids who are hypersensitive sometimes, but hyposensitive in other situations. Lots of repetition in kids, they like to wear clothing in layers.
-What are the most unrelatable parts of ASD?
For someone with ASD the specifics of what feels good or bad cannot easily be named, and so becomes a way of life. Also those with ASD can be both hypo- and hypersensitive.
-What are some things that may be sensorily uncomfortable for someone with autism?
If clothes are too tight (like with latex) or too loose (like with cotton). Visual stimulation and excessive coloration as well as auditory stimulation like very loud bells are not good.
Max (from Dannys Farm) - edited from memory*
-What are some things in clothes that are bothersome for someone with ASD?
Broken zippers and useless pockets are bothersome - basically items that should have a function but don’t. Or if there’s a size mismatch to the function - for instance a small pocket for a big object. Shoes that are too tight are annoying, but in some cases pressure can be good. For example, bumpy seats are much better than smooth seats because the lack of sensory input makes kids with ASD restless. One solution is to give the kid a bumpy ball that they can hold and touch, or to provide them with an exercise band for them to kick. Kids don’t like feeling still, they need movement.
Yudi Bennett (from Exceptional Minds Studio) - edited from memory*
-What do you think are the most unrelatable parts of ASD? What aspects of working with adults who have ASD are difficult?
Adults who have autism often have this rigidity that you have to work around. They have particular patterns that they don’t really change.
-What is the difference between kids and adults with ASD?
Of course the disorder affects each individual differently, but one difference that I have seen from my son is that he became much more flexible as he got older. He used to only eat three different foods that we would rotate, but now he eats more different foods than I do. Also there is less tolerance of transitions as a kid, especially with new subjects or ideas.
-Do the adults you work with ever show signs of being sensorily overwhelmed?
Yes, even as they get older it affects them (most kids seem to grow out of the worst of their sensory difficulties). For instance, my son went out with some friends of his to see a movie, and one of them who is 20 years old had to leave in the middle of the movie because the noise was too much. In our classes some of the kids have to take breaks from the noise - a lot of them wear headphones when they work.
-What do you think is the most important thing to do for someone who has ASD?
We try to look at someone’s strengths - to see their abilities, not their disabilities. There are kids who can’t hold a conversation very well but are brilliant artists. The phrase don’t judge a book by its cover is really true here.
-And just a personal question, because I've read various opinions about it - do you think that it is better for someone with ASD to change their behavior to adapt to society, or do you think that maybe society can learn how to adapt its attitude to those with ASD?
Its a little of both. We teach work readiness classes because there is a society expectation of a certain type of behavior to be accepted in the workplace. Although our kids are honest, you can’t just tell your boss that you don’t like his haircut. So we try to help them adapt to societal norms. However society needs to be more enlightened about disabilities, the same way that we try to be about cultural and racial differences.
The students at Exceptional Minds are hugely successful in their pursuits in the VFX industry, working on movies such as American Hustle and Dawn of the Planet of the Apes: http://www.
Sue Trautman (from Center for Developing Kids)
-What do you think are the most unrelatable parts of ASD?
People assume because someone can’t speak they can’t understand. It is hard for someone with ASD to convey this, and it is hard for someone without ASD to understand. Often people don’t realize that relationships can be strong without words.
-Are there any aspects of the disorder that you wouldn't have understood except by knowing someone who has ASD?
What I’ve mentioned above holds true, and also people often assume that because someone is autistic, or different they must be unhappy. The kids are fine usually happy, it seems like 80-90% are generally happy, and often it’s the parents who are worried and scared. Many of the kids don’t really consider themselves that different.
-Do the kids you work with ever show signs of being sensorily overwhelmed?
Oh yes, all the time. There is an insatiable need for movement in many of the kids I see, and the need for lots of input to the muscles and joints. So those are underesponsive systems. The overresponsive systems are usually the auditory and olfactory, and sometimes tactile. All of the kids may have fluctuating responses though. The kids usually have an amazing visual sense - they can do puzzles in a minute, or have great visual memory, and I think this also helps them more broadly to have a great memory as well.
-What are the hardest parts of the sensory difficulties?
It looks like the hardest sensory experience to live with for many is sound, because its so overwhelming. Smell and taste are also difficult too, because we all have to eat, taste and smell and these senses are primal and protective and linked. Touch can be difficult in the same way.
-What do you think is the most important thing to do for someone who has ASD?
Assume they understand you, talk to them as such, and treat them with dignity. There is no loss to doing otherwise, even if they don’t understand. We should respect their differences and desires, if they can or can’t communicate or if they have a desire to move, and not freak out. If you treat someone with respect in that way, then you can form a relationship - and for me, that’s what’s most important. So respecting their needs is key for relationships.
-And just a personal question, because I've read various opinions about it - do you think that it is better for someone with ASD to change their behavior to adapt to society, or do you think that maybe society can learn how to adapt its attitude to those with ASD?
A little of both, but I would say its more necessary for someone with ASD to adapt, only because of the misunderstandings that are out there. But awareness of autism has skyrocketed, so society is naturally changing. If I had a grandchild with autism they would be in such better shape acceptance wise than they would have been 10 years ago. Helping children adapt or adapting the environment is my job as an occupational therapist; to help kids participate in their daily occupation comfortably, mostly related to school and family activities.
*Remember that these are notes that are run through my faulty memory filter, and they may be inaccurate.
