“The word incurable is quite devastating-sounding, but you can also look at it as being that autism is durable. Looking at this jewel through different facets does not trivialize the challenges of people who have tremendous obstacles. I’m trying to look at the whole picture, including the beautiful part of it. Autism is as much a part of our humanity as the capacity to dream.”
—Kathleen Seidel
Waste not, Want not
Erika C –
My son was diagnosed with Autism at the age of 1yr, 10mos. I was in denial from that day. We sought more opinions and though I am lucky to live right outside of Boston, the mecca of medicine, having access to the best, most cutting-edge of treatment, I still had a very difficult time accepting that my son wasn’t “normal”. To me, he had up to that point seemed normal because he was and is my only child, so I knew no different. Once the diagnosis was confirmed it was a whirlwind of evaluations and appointments that followed. He was soon after, diagnosed as being Non-verbal as well, and still is at almost 6 yrs old.
It was dizzying to me, as until now, I have always had a pretty average, fulfilling life which knew little hardship. My husband had an even harder time, so I had no choice but to “pretend” to be the rock of the family, while I myself had little support from my own family who seemed to say and do all the wrong things which made my life more difficult to bear.
However, as time went on, I changed.
In the beginning, I was so concerned from what I read online and heard from EI and my son’s School, about his therapy and what he needed, medical interventions and behavioral treatments, that I was a walking body of complete anxiety and worry about my son’s future.
After about a year & 1/2 of living in self-imposed agony, I learned my most valuable lesson that has made my life with Autism playing the most central role, remarkably less stressful, and ironically, enjoyable. What I consider to be my best lesson from my son’s Non-verbal Autism, is my conscious choice to STOP placing every waking moment’s focus on my son’s future, and instead, focusing on TODAY; Each day’s special moments and each day’s obstacles. I decided to allow the future to come as it would no doubt do anyway.
I am not consumed with my son’s life when he reaches age 10, because right now he is only 6 and I am focused on providing him with a happy, loving, fulfilling and enriched life each and every day, and in turn, I have found peace and joy again in my own life. I adapted. Peace and joy is once again in my household, and for all our uniqueness as being not your average family, we are just as “normal” as I will EVER know “normal” to be. This is the only child I have, the only family I have, and the only CHANCE I have at making it great.
From Far from the tree – WASTE NOT, WANT NOT
One step forward, many steps back
Dennise O’Grady –
When the Newtown shooting happened and Adam Lanza’s brother said something like, “My brother has Asperger’s or a personality disorder,” my heart sank. My own son with Asperger Syndrome/HFA has just gotten a job at 14, wore button-down shirts everyday, and didn’t have a single friend (but was not anti-social). I work as a
teacher in a school and, by Monday, an informal parent task force was forming that sought to “take those kids out of regular classes in the name of keeping our kids safe.” I wrote this at that time.
These things will happen this week.
1. I will say that autism is not mental illness.
2. I will explain that you can have no friends and not be lonely.
3. I will talk about the difference between being a loner and being alone.
4. I will tell my son that, for now at least, he will need to unfasten the very top button of his button-down shirt.
5. I will say that Asperger Syndrome is not always associated with high, measurable IQ.
6. I will watch a 7th grader with mental illness get a bad grade in science, yell out that he has shit for brains and that everyone’s out to get him before taking a walk together to cool down.
7. I will say that while many autists have aggressive, on-the-spot meltdowns, they do not engage in premeditated violence, carried out over months.
8. I will say that it is a trend in the suburbs to mask mental illness and high IQ as Asperger Syndrome.
9. I will tell my teenage son to stop calling me mommy.
10. I will say there is no research to support homeschooling with poor socialization.
11. I will say that graphic violent gaming is not good for any developing brain.
12. I will say that graphic violent gaming in a person with impaired empathy is a recipe for disaster.
13. I will watch as middle-schoolers begin to identify and target peers they believe are threats.
14. I will call the police in my town and identify my son as having an autism spectrum disorder. He and I will go and introduce ourselves.
15. I will tell my students that our school is safe while wearing the ID badge that would be used to identify my body.
16. I will write about my friend who hanged himself a few Thanksgivings ago in the woods behind his mother’s house. They found cotton wedged far down inside his ear canals that he used to drown out the voices.
17. I will cringe at what feels like such overt disrespect: the advice to go home and hug your own kids a little harder tonight.
18. I will tell my son he needs to change the sound of his laugh and we will practice alternatives.
19. I will say please stop dancing, walking or running for autism awareness. Save your money. Think about investing some time with a family over a year.
20. I will be required to take part in meetings about installing bulletproof glass windows and arming administrators.
21. I will reflect on the allure of denial.
22. I will watch as 8th-grade girls use Sharpies to draw interconnected circles on the inside of their wrists: in one circle they’ll write RIP; in the other, NT.
23. I will sleep next to my youngest child, age 6, and wake often during the night to touch the top of his head. It will feel like dread.
24. I will sing Leonard Cohen’s “Hallelujah” next to my son while he plays piano.
25. I will remember a secretary I hired once who said, “Disability is a minority you can join at any time.”
26. I will stay away from church.
From Far from the tree – ONE STEP FORWARD, MANY STEPS BACK
Wouldn’t change anything
Rob Boileau –
My daughter is autistic. I admit it took a long time of coming to acceptance of this reality in our life. I have been asked many times if I could change anything and truthfully I wouldn’t. This disability being present in our family has taught me so much about life. After spending countless hours studying autism, I do know I can face anything that comes our way. Yes, there were times when she was younger I was doubting she was ever gonna walk or talk. People kept telling me to slow myself down when thinking about this. My belief changed when she did start to walk at 3 1/2 years old. It’s been daunting as a single parent to shoulder the load. Once I clearly understood what I was dealing with I decided to dig down deep and help my daughter with everything. As I did this I found I was getting to the stage of acceptance of my child. I wouldn’t change a thing about her because she is unique and I like that. The connection we share is stronger than ever. I am now helping other families going through the same thing by sharing my experiences and trying to make them feel better and telling them that It does get better and it just takes patience.
From Far from the tree – WOULDNT CHANGE ANYTHING
Story of artist Stephen Wiltshire ‘offers much hope and joy’
Stephen was born in London, United Kingdom to West Indian parents on 24th April, 1974. As a child he was mute, and did not relate to other people. Aged three, he was diagnosed as autistic. He had no language and lived entirely in his own world.
At the age of five, Stephen was sent to Queensmill School in London, where it was noticed that the only pastime he enjoyed was drawing. It soon became apparent he communicated with the world through the language of drawing; first animals, then London buses, and finally buildings. These drawings show a masterful perspective, a whimsical line, and reveal a natural innate artistry.
Stephen Wiltshire is an artist who draws and paints detailed cityscapes. He has a particular talent for drawing lifelike, accurate representations of cities, sometimes after having only observed them briefly. He was awarded an MBE for services to the art world in 2006. He studied Fine Art at City & Guilds Art College. His work is popular all over the world, and is held in a number of important collections.
The Pink Ghost by Périphériques Architect
Péripheriques Archtiectes agency was invited to intervent on the Furstemberg square within the second edition of the Exposition of contemoirary art in Saint-Germain-des-Près/ Parcours/ Paris-Soho which took place from the 28th of May to the 18th of June 2002 and was organised by the Saint-Germain-des-Près committee.
It is about a “plastic” intervention in order to “transform” the square in an attitude of “preservation”. PINK GHOST was implemented in a rose-coloured resin wraped around four trees and a street lamp up to 2m50 covering also the square’s total surface.
While making the installation, we have cleverly slided under the resin twenty or so chairs and five coffee tables. This exterior urban place (the square) have then become an (interior) exterior lounge and was suddenly questioning the status of the public space in the city.
Once uninstalled in Paris, Pink Ghost was rebuilt in the french pavilion at the architectural biennale in Venise, as the memory of a square and it’s new use.
From Périphériques Architect – Pink Ghost
Linger a Little Longer by Jay Watson
Remember when you were scolded for not using a coaster? Worry no more…. The ‘Linger a Little Longer’ Table and Bench by Jay Watson is a deceptively understated design with a dynamic twist. Making dining a bit more fun, the thermochromic finish of the table and benches responds to the heat of any plate, mug or serving dish – or body part – placed on it, to leave an ephemeral ‘watermark’. Reacting once contact with the lacquered surface of the 6-8 seater table reaches 27 degrees, the heat can create all kinds of familiar and fascinating patterns, that retain their interest. Working beautifully with the grain of the solid, locally sourced chestnut timber, these rings, smudges, fingerprints and patterns make this design a talking point.
From Jay Watson Design
Ne Dérangez Pas Mes Cercles by Julie Biron
Julie Biron, an independent architect practicing in Berlin, created “Ne Dérangez Pas Mes Cercles” (Do Not Disturb My Circles) for the 2012 Lively Architecture Festival in Montpellier, France.
DO NOT DISTURB MY CIRCLES! is an incitement to disobedience.
The disk surface is dense and rigid, the court is still and silent. The visitor approaches, hesitates and looks. In places the passage seems possible, try!
Upon entering the area, it suddenly comes to life. The rods and disks wobble and sway. The other visitors have understood and have followed suit, each on their own adventure through the area. It is then that what seems fixed and rigid and turns into a living, moving object, activated by the passage of visitors having become actors.
Shifting the perception of the place created a surprise. Visual and audible vibrations of the surface suggest a reading of the courtyard as “basin”. The installation recalls that at first glance the ordering dense and complex relies on a delicate balance that it is easy to disturb.
From Contemporist
Cité Surprise, Cité Surprenante by Tri-Oh! ateliers
City surprise, surprising city is one that changes the look Montpellier installation. Boxes invade the courtyard and we await their surprises. We walk around, we introduced and hides inside. The visitor also protagonist of the facility, the city discovers hidden, forgotten spaces, empty boxes … are transformed into kaleidoscope, with amazing views of the courtyard, toward the sky and the rest of the visitors … Open eyes!
Since 2008, Tri-Oh! Develop workshops and the Variety claims by leaning on the roads of personal Javier Pena Ibanez and Cristina Sanchez Algarra: urbanism, landscape painting, video art, photographs and architecture. This group Motions from Their meeting at the National School of Architecture of Madrid; Convinced of the interest Huadu To Be in the crossing of several disciplines, Their output is nevertheless marked by the Will to Develop a strong Theoretical approach based on the architectural and sociological analysis. It is a matter of changing the glance on the city, in the deepening of democracy and the participation of the citoyens, the renovation and the rehabilitation, the urban criticism on several roads. This rich approach always leaves the precise examination of the building, the district, the city of the territoire and arrived to detail of smaller elements.
From festival des architectures vives
Wunderbugs by OFL Architecture
Wunderbugs is an interactive architecture fully dedicated to the human-insect relationship, curated and designed by Francesco Lipari and Vanessa Todaro from OFL Architecture (co-authors of Sainthorto).
The entire pavilion was realised in wood combining traditional techniques and computer-numerical control machines. Inspired by the typical shapes of the Roman Baroque, hybridized with geometries that the insects are capable of producing, the pavilion was seen as an aggregation of repetitive and simple elements. Wunderbugs can assume infinite configurations thanks to its modularity realised through the careful combination of 1104 arc modules, 92 rhombuses which allow to alternate and adjust the pavilion’s fullness or emptiness, and 198 knobs in wood that regulate the circular or curvilinear progress.
Wunderbugs’ indisputed protagonist is the world of insects. Within Wunderbugs six spherical interactive ecosystems are equipped with Arduino and sensors for motion, humidity, temperature and intensity of sunlight. This data, combined with the information collected by a network of ultrasonic sensors able to detect the position of the visitors, is used to modulate in real time the Wunderbugs musical composition implementing a complete integration between architecture and environment. By playing with technology, the architecture and pavilion’s geometry create an outdoor room equipped with an audio installation in which the music makes through combining nature and human an inseparable (and abstract) relationship with the world’s harmony.
INTO THE MIND 
