Autistic and Seeking a Place in an Adult World

This is an article from the NY Times about a 22 year-old autistic artist.
"As few as one in 10 [persons with autism] hold even part-time jobs. Some live in state-supported group homes; even those who attend college often end up unemployed and isolated, living with parents.

But Justin is among the first generation of autistic youths who have benefited throughout childhood from more effective therapies and hard-won educational opportunities. The program [described in this article] is based on the somewhat radical premise that with intensive coaching in the workplace and community — and some stretching by others to include them — students like Justin can achieve a level of lifelong independence that has eluded their predecessors."

The full article, Autistic and Seeking a Place in an Adult World, is inspiring and has illustrative multimedia features as well.

The Horse Boy (2009)

A Father's Quest to Heal His Son
by Rupert Isaacson (The Film will be released late 2009)
Review by Temple Grandin: "This is a fascinating book. It is the tale of a family's journey to Mongolia with their five-year-old son who has autism. The family travels to the northern remote areas and lives with the nomads and herders away from the cities. I loved the descriptions of the nomad way of life, and that they were so accepting of a child with autism. Rowan loved baby animals and the people did not mind when he grabbed a baby goat and climbed into one of their beds with it. During the trip, Rowan developed improved language and behavior. He also had a magical connection with horses. There are many wonderful passages about Rowan’s exploits with a Mongolian horse named Blackie.

Rupert Isaacson was surprised at how accommodating the Mongolian people were. They tolerated Rowan's pushing, yelping, and joyful rushing about. At the end of the book the family get a rude awakening when a German tourist who was a psychologist disapproved of bringing a child with autism to a national park to view wild horses. I was interviewed by Rupert Isaacson before he wrote his book and we discussed perhaps the shamans and the healers in some traditional cultures had autistic traits. Their rituals with rhythmic chanting and repetitive movements have similarities to autistic "stims." When I was little, I went into a calm trance-like state when I rocked and dribbled sand through my hands.

Children with autism need to be exposed to lots of interesting things and new experiences in order to develop. One of the reasons the trip to Mongolia was so beneficial was that Rowan could explore lots of fascinating things such as horses, streams, plants, and animals in an environment that was QUIET. The Mongolian pastureland was a quiet environment free of the things that overload the sensory system of a child with autism. There were no florescent lights or constant noise and echoes. Some individuals with autism see the flicker of florescent lights which is like being in a disco with strobe lights. When I was a child, loud sounds hurt my ears.

Parents and teachers can duplicate the benefits of this trip without having to travel. Horseback riding is a great activity. Many parents have told me that their child spoke his/her first words on a horse. Activities that combine both rhythm and balancing such as horseback riding, sitting on a ball, or swinging help stabilize a disordered sensory system. There are lots of places you can take a child to explore nature such as parks, brooks or a field with tall grass. Children with autism need to be shown interesting things and encouraged to do new things. Everywhere Rowan went he was asked questions and encouraged to talk about the things he was looking at. You need to find QUIET, interesting places away from crowds of people, florescent lights, traffic, and noise, where you can engage the child and keep him tuned in. This is a great book and everyone who is interested in autism, animals or different cultures should read it. --Temple Grandin

This may be an important book for parents of an autistic child.

Parallel Play (2009)

Growing Up with Undiagnosed Asperger's
by Tim Page

When he was 45, Mr. Page learned that he had the autistic disorder called Asperger's syndrome. He was relieved to know that his condition was quantifiable and that others share the same general symptoms. But he was also much too smart and self-aware to feel true kinship with other Aspies, as he calls them.

Excerpt.

Spelling Love with an X:

A Mother, a Son, and the Gene That Binds Them
By Clare Dunsford

Reviewed by Deborah Alecson
Spelling Love with an X is a first person narrative by a mother, who learns that her child, who had not been developing normally, tested positive for fragile X in 1992 at the age of seven. It is a beautifully written story of her journey with her son, the break up of her marriage, and her personal transformations that resulted from having a child with special needs. She also writes about what she feels being a carrier of fragile X and the one who passed the defective gene on to her son, J.P. Dunsford is a writer with a Ph.D. in English and her command of the language and her ability to relay her story are clearly evident. She intersperses poetry and analogies that correlate the nature of genetics and its particular language of DNA, repeats, replications, etc. to her reality of raising her challenging son whom she loves unconditionally. The book ends with an appendix of resources for fragile X syndrome
This is one of the few books written about fragile X syndrome, one of a family of genetic conditions that are the result of a mutation on the FMR1 gene. Fragile X is still highly under-diagnosed, but the known statistics indicate that Fragile X affects one in 3600 males and one in 5000 females. It is the most common known cause of inherited mental impairment. Fragile X is also the most common known single gene cause of autism (2% and 6% of all children) and approximately one-third of children diagnosed with fragile X syndrome also have some degree of autism. The blood test for fragile X was first available around 1990. Since that time, a more sophisticated blood test has been developed that can detect individuals who are carriers or have the premutation (one in 130 women and a smaller number of men), and those have the full mutation. It was recently discovered that individuals with the permutation often develop neurological and cognitive problems later in life, known as Fragile X- associated tremor/ataxia syndrome. Women with the permutation can also develop fragile X-associated primary ovarian insufficiency.

The Siege & Exiting Nirvana

From Google Books: At the age of two, in 1960, Jessy Park was remote, withdrawn, unable to walk or talk, yet oddly content within the invisible walls that surrounded her. Doctors were baffled. The study of autism was still in its infancy. Jessy's family stepped in. This book records the challenges and rewards of the first eight years of Jessy's life.

Reprising her own now classic work The Siege, Clara Claiborne Park gives us a moving, eloquent portrait of Jessy as an autistic adult -- still struggling with language, with hypersensitivities and obsessions, and with the social interactions that most of us take for granted, but at the same time achieving more than her parents could have hoped for, becoming an accomplished artist, and growing into an active member of her family and community.

For more on Jessica Park and her art.

Oliver Sacks called The Siege: A Family's Journey into the World of an Autistic Child "one of the first personal accounts of autism, and still the best -- beautiful and intelligent." Now, in Exiting Nirvana, Clara Claiborne Park continues the story of her daughter Jessy. In this moving, eloquent memoir, we see Jessy's progressive journey out of her isolated "Nirvana" into the world we all share. It is an honest and captivating story of emergence, perservance, and love.