Wednesday, August 27, 2014

Learning about Autism

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 (, at various occupational therapy clinics, at ACEing Autism (, at Foothill Autism Alliance (, at Exceptional Minds Studio (, at Center for Developing Kids ( and at Danny’s Farm (named after Danny Gott himself - All of the people who work with those who have ASD for a living gave me a much broader perspective of the disorder than I would have gained just reading books or articles on my own. From these talks and my own research, I think that the best thing I could say about the disorder actually comes from other people’s mouths. Here are some notes from the Q&A’s I did:

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

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. 

Monday, August 18, 2014

Synesthesia Suit, making of

This suit is one that I wanted to make to represent the neurological phenomenon of synesthesia, or a mixing of the senses.

Common forms of this include seeing letters and numbers in color (color-grapheme), seeing numbers or days of the week taking up allotted physical space, or hearing colored shapes/geometric figures. No two forms of synesthesia are exactly alike, and it seems that almost any combination of the senses could occur. This sounds very exotic, but many with synesthesia do not realize - sometimes for their whole life - that they can see/taste/hear/feel things differently than anyone else. The neuroscience behind it is a little complicated, but research has pointed to the limbic system being involved (the limbic system is also the seat of emotions, behavior, motivation, long-term memory, olfaction and often unconscious brain processes). If you’d like to read more about the subject, a good, non-scientific read is The Man Who Tasted Shapes by Richard Cytowic. Another interesting text is The Mind of a Mnemonist: A Little Book About A Vast Memory by A. R. Luria. Although this text is better known for its documentation of the subject's seemingly endless memory, the subject also had very, very complete synesthesia. If you prefer videos, this TED talk by Daniel Tammet also covers some details of living with synesthesia:

After reading The Man Who Tasted Shapes I was intrigued by a case listed in the book of body posture synesthesia - a very rare case where a boy would have a specific body posture for each word. This combined with documented cases of dancers and others with kinesthetic synesthesia (usually some motion to some sort of visual effect) inspired me to make a body suit that represented synesthesia. 

One synesthesia bodysuit.

The body suit is nude, so that more attention is called to the decorations. I wanted to use only primary colors, because synesthetes often see in very basic colors, or only in a certain range (red to white, or yellow to blue for example). 

Detail of red fuzzy spots on my leg.

I also wanted a variety of textures to show the wide range that can be felt (the man who tasted shapes, in Cytowic’s book, could detect pointy, earthy, smooth (like glass), among other very specific, detailed sensations). I stuck to basic shapes and geometric figures in the suit (lines, circles, rings, lighting bolts) because visual stimuli are often limited to such simple figures. 

Lightning armpit!

Lastly, I added the blue sleeve because I wanted fabric that would change shape as the body moved, thus connecting body motions to the silhouette of the bodysuit. 

I don't really have a good picture of this - I might upload one later.

Looking at the bodysuit, I’m not quite sure if someone who has synesthesia would ever see the body like this. But as a visual/physical representation of the phenomenon, I don’t think it is too far off target. 

Saturday, August 16, 2014

Autism Dress, making of (UPDATED - 8/29/14)

Based on talks with people who have autism, parents of kids with autism, therapists, and by reading various books by people with autism and their relatives, I've developed a decent idea of how I wanted to represent Autism Spectrum Disorder (ASD) in dress form. (For more details on these talks and how I came to my dress design see here: I chose to represent two contrasting aspects of the disorder, with a dress whose top half is overstimulating, and whose bottom half is understimulating for the senses.

Finished product!

Roughly, the current scientific theory is that autism is caused by broad-tuning of neurons in the brain. This means that neurons are firing for a wider range of stimuli than normal - one comparison would be someone having a hard time distinguishing between a b and a d on paper.

This could be due to an oversensitivity to inputs in the brain, which manifests itself as hyper-sensitivity of the senses. So normal lights may seem piercing, mildly annoying wool becomes too scratchy to wear, and high pitched noises seem to burrow to the depths of the brain, instead of being easy to ignore.

To represent the overstimulation in my dress I had a couple different approaches. In the bodice of the dress I chose to use fabrics that look 'dizzying' and a liner that is made of scratchy sequins. I also installed an obnoxiously large and uncomfortable tag in the back, since tags can be particularly annoying to autistic kids.

Pinning the two layers to check for size.

That's me!

Cowbells are attached to the bottom half of the dress to generate an obnoxious amount of noise when the wearer moves.

However, for the rest of the bottom half I tried to convey the understimulation that occurs. Sometimes when sitting on smooth surfaces, or trying to stay still for long amounts of time, kids with ASD will have a hard time focusing due to how little stimulation they are receiving tactilely or otherwise. One trick to help stay focused is to hold a bumpy ball, which provides enough tactile stimulation to avoid feeling restless. Thus the bottom of the dress is smooth, undecorated and loose, to mimic this lack of stimulation.

I have a series of buttons up the back that are shiny, but nonfunctional, as well as a string around the waist that is solely decorative. This is because a volunteer who works at Danny's Farm mentioned to me that excessive attachments that have no function on clothes (pockets that are the wrong size for their function, broken zippers, etc.) are particularly annoying for many of those with ASD.

Useless buttons.

Useless string.

I also added details like optical illusion buttons and a shoulder patch on one side. This is to both add to the overstimulating look of the top, as well as represent how in ASD one side of the body can be dominant (better hearing, stronger, faster, better hand grip, etc). The skirt is asymmetric for this reason as well.

Asymmetric sleeves.

 Choosing optical illusion buttons to mess with your eyes.

Sewing this dress required a lot of planning in advance to figure out how I could include all the details I wanted but still have a dress that looked like, well, a dress. Once I finished planning, I started with an old pattern I had for a corset bodice, and cut out the front halves and sewed those together.

The shoulder was made by draping on my body form.

I also cut out the sequins panels and sewed those sequins side in, so that the liner was uncomfortable as could be (I actually had to wear an undershirt when I was testing the dress because taking it on and off was scratching me too much).

I measured, cut, ironed and sewed the bodice, and then got to work on the skirt.

This was pretty simple, I just took measurements for my hip to knee length and my hip to floor length and cut the skirt to fit. I had to shorten it a bit so I wouldn't have to bunch it to fit the circumference of the bodice.

After I sewed the skirt I cut a slit in the back and ran through about 30012938 different tests of zipper location on the back. After about 5 modifications The zipper was sewn on.

From there I just quickly added the string around the waist, the buttons and pins to front left side, and the cowbells to the bottom (with an extra panel of fabric so that the skirt won't rip under all the weight). Wa-la! One autism dress, made to order.

I haven't yet tested the dress on anyone but I plan on doing that sometime next week, if I can find someone my body size. Although it took a long time, I'm glad I went through the trouble of planning this dress, so that putting it together was relatively easy.

Monday, August 4, 2014

To Dos...

So I made some lists of the things I have to finish by the end of this month (apologies for the note-taking slang):

Neuron Shirt To Do
-Finish part of neuron printed image - make sure thick/dark (go over with black marker)
-Cut out/into pieces of neuron that will fit on screen for screen printing
-Find a glass/acrylic pane
-Do first screen print/exposure
-Text run on shirts from CVS or old tank tops
-If good then try on the dress shirts
-Repeat the above three steps as many times as there are neuron pieces
-Wash shirts?
-Get reed/hall/IR sensors for cuffs
-Sew on circuits with Protosnap LilyPad Development kit
-Repeat on second shirt (printing/circuit sewing)
-Write blog post on making of

Autism Dress To Do
-Go to ACEing Autism ( to talk to kids with varying degrees of ASD
-Look up fabric amounts for pattern/wait for dress to arrive (~10 days --> August 14)
-Get noisemakers for skirt
-Once dress is here, dissemble it (if it fits --> if not make alterations)
-Design fabrics for bodice/skirt
-Cut out fabric
-Sew together - make sure half of top is asymmetrical
-Attach pins to front
-Make curse words belt?
-Test on various people --> survey?
-Send to various organizers of Autism conferences/ask to be displayed in class at MIT
-Write blog post on making of

Depression Suit To Do
-Wait for Lise to get back
-Test placement of weights on back/height of sleeve cuffs/straps placement
-Make face cone
-Test outfit on other people - survey?
-Update blog post

Synesthesia Bodysuit To Do
-Order plastic blue bowl from Amazon/other site
-Figure out how to combine all the various fabrics --> design outfit
-Sew pieces on/glue on
-Fit on model (while doing gluing?)
-Try on others --> record responses (survey?)
-Write blog post on making of

General To Do
-Write up overall design process in blog post
-Get (enough) survey responses from outfits to write up report/summary for Eloranta judges
-Organize 'fashion show' at Course 9 department event - email administrator

I've cut my project down to four outfits in the interest of time, but I still have so much to do! Agh, wish me luck.

Sunday, August 3, 2014

Depression Suit, making of (UPDATED - 8/14/14)

This was definitely my most work intensive outfit (naturally, as my first) and I’m so close to being done it hurts!

As with any good project, I started this suit by researching. I wanted to find books that would be good personal accounts of depression, so I could get a good idea of what it was like to have the disorder and how it affected a person’s daily experiences. I didn’t want clinical accounts as I’ve heard them in neuroscience textbooks and lectures and as I’m trying to read a wider audience than the scientific community with my outfit.
My research began with the UCLA library resource department (so sorely underused at universities everywhere). I got super lucky because the person who helped me find my resources also became my model. Lise has had depression, so when I ran the ideas of the outfit by her, she had some interesting suggestions. 

Lise, my fantastic headless model. 

She also pointed me to several good books and counseling transcripts on depression.

Through talking with Lise, reading the transcripts and books on depression, and other conversations with friends of mine who’ve had depression I decided to choose three traits to focus on in the outfit. For each trait I had a corresponding design element. I wanted to depict the low energy and tiredness experienced by those with depression through weights sewn into the jacket and pants, numbness through cold packs on the wrists and ankles, and the isolated and lost feeling through a facial mask that would somewhat resemble a dog cone of shame.

Once I had the overall idea to guide my outfit design, I was ready to start. I bought several pattern making books and worked out the designs for a jacket and pants for Lise. 

Measure twice, cut once.

I'm like, 90% of the way to Project Runway.

Arms, so much easier said than done.

Forever refitting the shoulder.

Finally made some darts that look good.

Hurray, darts (and fitted pants)!

This took three long, arduous several reworkings but eventually I got the patterns properly fitted and was able to start on making the actual jacket. I used canvas since I wanted the overall look to be reminiscent of a straitjacket.

Then it was mostly just cut, sew and cross my fingers that it would fit.

My 3 step routine - iron....


Pin some more.

Iron some more.



Be impressed at how I can sew things.

I added a whole zipper! 

Iron forever.

Cut some more.

Pin more.

I really hate ironing.

Before and...



Do it again because ironing is a relentless, merciless, ravenous beast that can never be satisfied.


I could weep. The ironing is finally over!

(As you can see, 90% of sewing is pain and ironing. And getting stabbed over and over with pins.)

Right now the jacket is almost finished, but I need to wait for Lise to get back from vacation before I can make the final touches of adding straps to the back of the jacket, fitting weights on the jacket, ice packs in the cuffs and the dog cone of shame on her head. After that I’ll be done and I can test the outfit out on others. Woohoo final stretch!

I have finished my first outfit!
The weights have been added, cold packs fitted in the wrists, back straps and belt loops have been sewn on, and two masks have been made.

 The full outfit!

  Here it is on Cathy, another volunteer

 The face mask, closer up. I've since cut holes in the front for breathing.

Details of the pockets where weights will be placed in the jacket (2.5 lbs on each side, and 5 lbs at the bottom of the pants).

 Straps getting sewn on.

Details of belt loops.

I'll be bringing this suit around with me in the next few weeks to test on volunteers, although I've already gotten really good feedback from Lise and Cathy when they tried it on yesterday. As they walked around, their friends stared, either shocked, amused or a little scared to try on the suit themselves. Many commented on how it looked like a prisoner suit, and many more asked what it was for. I also asked Lise if this suit came close to capturing some aspects of depression. She said that when wearing the suit people can look at you and make a judgement, that you are creepy, scary, or weird, and they might want to stay away. The mask in particular made the wearer feel anxious, hot and claustrophobic. Due to the weights it was hard for Lise and Cathy to walk very well - as Cathy said "you're not going anywhere fast." In addition, Cathy said that she felt confined and imprisoned in the suit, particularly since it was so big on her.

In terms of the project, all of these comments and reactions were a success. What I wanted to capture in the outfit did not precisely match my initial goals, but I think it is still a good representation of what many people find themselves struggling with. The weighing down, the discomfort, the imprisonment, the feeling that you are ostracized from others, all these are factors in why depression is such a debilitating disorder. Even this week, the death of Robin Williams shows how depression can affect someone so deeply, but still be almost undetectable on the surface. This might be a bit silly, but I'd like to dedicate this suit to Robin Williams, and those like him suffering from depression. I don't know if something like this will make it easier to get help, but it definitely is a good way of provoking a discussion, as I saw yesterday when so many wanted to know why Lise and Cathy were walking around in a strange straightjacket. I believe that people do care about each other and will do what they can to help each other - I think that often times what's missing is our ability to spot trouble without asking the right questions. I hope this suit helps people ask the right questions.