Coach Mike Frandsen Autism Resources

Autism Websites with a Sports Connection

Coach Mike's Resource Links

Athletes Against Autism is a group of athletes, personally touched by autism, who are harnessing their efforts into one voice in order to raise awareness and funds for autism research, treatment and education programs. This is an initiative of Autism Speaks. Founding members are NHL hockey players Olaf Kolzig, Byron DaFoe and Scott Mellanby, who are fathers of children with autism. Kolzig played for the Washington Capitals from 1993 to 2008, led the Caps to the Stanley Cup Finals in 1998, and won the Vezina Trophy in 2000 as the league's best goaltender. Kolzig currently plays for the Tampa Bay Lightning.

Former Pro Football Quarterback Doug Flutie founded the Doug Flutie, Jr. Foundation for Autism. Flutie's son, Doug Jr. has autism. The foundation promotes awareness and support for families affected by autism spectrum disorders. They provide funding for services for financially disadvantaged families who need assistance in caring for their autistic children. Flutie, who won the Heisman Trophy as the nation's best collegiate player in 1984, played professional football for 21 years.

The Dan Marino Foundation opens doors for children and young adults with autism and other special needs. The foundation supports integrated treatment programs, provides outreach, advances research, and fosters independence through transition programs. NFL Hall of Fame quarterback Dan Marino created the foundation after his son was diagnosed with autism. Marino's son, who didn't speak or communicate until he was nearly 4, is now in college and works as a DJ at local parties, having made amazing progress through various therapies.

Surfers Healing provides free surfing experiences to children with autism every summer on the west coast and east coast. It was founded by Israel "Izzy" Paskowitz and his wife Danielle. Their son, Isaiah, has autism. Izzy is a former competitive surfer and the kids are all teamed with experienced surfers. Watch videos of the camps. Izzy grew up as part of the "first family of surfing," and a documentary, "Surfwise" was made about the Paskowitz family.

Best Day Foundation provides surfing, bodyboarding, and kayaking to children with autism and special needs. Watch a video. Best Day is based in Monmouth, New Jersey and is an offshoot of the Ride a Wave program which provides surfing to kids with special needs in California.

There are many other autism websites with a sports connection. Feel free to email me at mike@coachmike.net if you think I should list any of them. Thanks.

Books

Here are some of my favorite books on autism. I’m sure there are a lot of great ones that I’ve missed. Feel free to let me know if you have other recommendations.

Engaging Autism: Helping Children Relate, Communicate and Think with the DIR Floortime Approach by Stanley I. Greenspan.

Sample quotes: "Many programs that focus predominantly on symptoms or behaviors rely on the troubling assumption that many children with ASD cannot ever acquire skills for truly intimate relating, empathy and creative problem solving. In contrast, the developmental model focuses on the underlying deficits that lead to autistic symptoms, rather than only on the symptoms themselves." (p. xiii)

"Some children with both severe oral-motor problems and general motor problems may appear to have cognitive disabilities and to lack social skills when in fact they are limited in expressing their abilities and skills by their motor impairments." (p. 5)

"Many programs select themes for the class that may or may not be relevant or meaningful to the child. It is far more useful to follow the child’s lead in selecting a theme that will engage him." (p. 284)

Facing Autism: Giving Parents Reasons for Hope and Guidance for Help by Lynn M. Hamilton

Sample Quotes: "Although we were overwhelmed with grief, a part of me was relieved that at least we knew what was going on. He wasn’t acting this way because I was a bad mother. Ryan couldn’t help it; he had autism. We finally had our answer." (p. 26)

"I often urge parents to stop seeing the doctor as the ultimate authority and to start viewing him or her as a member of their board of advisors…Ultimately, we are the ones who make the final decisions on what is best for our children." (p. 196)

"It’s like a football game. Before the quarterback throws the ball, he takes a few steps backward so his pass can make even greater gains." (p. 308)

Raising An Emotionally Intelligent Child by John Gottman

Sample quote: "Just because people are not overt in their expressions of affection, anger, or sadness does not mean that they do not experience such feelings internally." (p. 76)

I Can't Accept Not Trying: Michael Jordan on the Pursuit of Excellence by Michael Jordan

Sample quote: "Step by step. I can’t see any other way of accomplishing anything." (p. 2)

Unraveling the Mystery of Autism and PDD: A Mother's Story of Research and Recovery by Karyn Seroussi

Sample quote: "You have a right to use a doctor who shows you respect and listens to your observations. You should feel comfortable teaching her what you know and learning from her…You should have confidence in her judgment not because she has a medical degree, but because you know her to be fair as well as responsible. You should be able to trust her not to ridicule your ideas and to give you all of the information you need to make intelligent decisions. If you cannot, then it is your responsibility to find another doctor."

Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm

Sample quote: "Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. Cognitive and social learning cannot break through to a child whose world is intrusively loud, blindingly bright, unbearably malodorous and physically difficult to navigate. His brain cannot filter multiple inputs and he frequently feels overloaded, disoriented and unsettled in his own skin." (p. 7)

Autism and the Myth of the Person Alone by Douglas Biklen with Richard Attfield, Larry Bissonnette, Lucy Blackman, Jamie Burke, Alberto Frugone, Tito Rajarshi Mukhopadhyay, and Sue Rubin.

Note: The interesting thing about this book is not just that it is written about people with autism, but that other than the introductory chapters, questions posed, and the conclusion written by Douglas Biklen, the book is written by seven people with autism. There have been many books about how people with autism perceive the world – the difference is that this book describes it in detail by the people who actually have autism. It turns out that these people are extremely intelligent, cognitively aware and perceptive, yet at one time most of them were considered mentally retarded by their doctors.

Many of the writers in this book first learned to communicate through typing or Facilitated Communication (FC). FC is defined by the FC Institute at Syracuse University as:

"one form of augmentative and alternative communication (AAC) that has been an effective means of expression for some individuals with labels of autism and other developmental disabilities. It entails learning to communicate by typing on a keyboard or pointing at letters, images, or other symbols to represent messages. Facilitated communication involves a combination of physical and emotional support to an individual who has difficulties with speech and with intentional pointing (i.e., unassisted typing)."

Facilitated Communication is controversial because there have been some studies done that have not replicated the technique. However, other studies have successfully demonstrated authorship.

Sample quotes:

Douglas Biklen writes, "In light of the controversy, this book includes individuals who can type without physical support or who can speak the words they type, before and as they type them and after they have typed them." (p. 9)

Sue Rubin:

"I am the silent fly on the wall that listens and watches everything. I may not initiate conversation, but I am fascinated by the conversations going on around me." (p. 85)

"People stare and marvel at my irregular behaviors which lead to poor assumptions that I am simply mentally disabled with little or no intellectual functioning. My appearance is very deceptive, and day after day I am working, as an advocate for all autistic individuals, to let the world know that we are intelligent and witty, should not be judged for our quirky behaviors because they are only a minute reflection of our true abilities." (p. 95)

"Being looked upon as feebleminded is something I have been forced to endure my entire life. What an extremely difficult hole to have to climb out of, to fight for your own intelligence and capabilities." (p. 107)

Tito Rajarshi Mukhopadhyay:

“It was a terrible thing to hear from a doctor in Calcutta that I was mentally retarded. And thank God that mother did not believe it.” (p. 128)

"Yes, some areas remain less developed because of lack of associating the mind with body and environment. That does not prove that the mind is incapable of thinking…The proof of my retardation was that I could not follow basic commands. I was not able to apply my knowledge although I could understand perfectly well what was being asked." (p. 136)

Alberto Frugone:

"Other times I hesitated on doing things because, not knowing their purpose, clumsy as I am, my actions ended up in the wrong way and I was afraid of being considered stupid…Today I would say I experience the same fear if I’m insecure when I type to communicate and I feel a lack of tolerance from the others who might mistake me for stupid." (p. 190)

"I hear the words and I can decipher their meaning, but I don’t use my visual perception simultaneously, otherwise my attention would go." (p. 196)

Richard Attfield:

"An Educational Psychologist arrived at our home. He was a huge, insensitive man…he courageously announced I was severely mentally retarded…Angry with him, I took every book in the room and threw them in his direction. I do not think he took the hint that they were my books and I understood the words in them. Despite the efforts of my parents, I was denied entry into mainstream education on the grounds of my disability…As I see it, I was not given a fair chance." (p. 203)

"When I failed at set tasks or refused to do them I was then damned as not having the ability. Some of the staff did not seem to comprehend that being unable to vocalize one’s thoughts is not the same as not having any." (p. 210)

"That first day I typed it was a new beginning. No words can describe what it felt like to be able to converse with my mother." (p. 218)

"Not incorporated into the discussion, I became "talked about" instead of "included." (p. 240)

Jamie Burke:

"I understand why kids scream. It’s frustrating not being able to speak and feeling as a mostly invisible being." (p. 251)

I also include a letter I wrote printed in The Washington Post March 1, 2005 following the CNN documentary, "Autism is a World," featuring Sue Rubin using FC.

"FC proponents do not claim that it will improve the problems of ALL people with autism. Because it may not work for all such individuals does not render it completely ineffective. Even if one assumes that FC only works in a minority of individuals with autism, or that for some autistic people, the technique only works marginally, does that mean that the technique is completely invalid and that nonverbal autistic people should not be given the opportunity to communicate? Clearly, there exists an extremely wide variety of capabilities of people with impaired communication skills and within autism itself. If the standard to be used in determining whether a technique has efficacy means that it must be effective for all people with disabilities, there will never be a "proven" successful technique. People with autism range widely in their skills and deficiencies. FC has enabled many people to communicate, and some have learned to type independently or speak, by first learning through FC."

Articles

Special Olympics Montgomery Winter 2007-2008 Newsletter

Time Magazine: Inside the Autistic Mind, by Claudia Wallis, May 7, 2006

Time Magazine: Helping Autistic People to Speak, by Claudia Wallis, May 7, 2006

Potomac Gazette: Mike Likes, by Monica Wraga, June 5, 2002

Autism Links

www.playproject.org - helping parents become their child's play partners

EASE: Educate, Advocate, Support, Empower

My friend Chammi Rajapatirana and his parents moved to Sri Lanka to start the EASE: Educate, Advocate, Support, Empower (EASE) Foundation devoted to providing facilitated communication and alternative and augmentative communication training for people with speech impairments. The Rajapatiranas started a small learning center that students with disabilities attend for free. Students are first taught to point to objects with the goal of eventually typing without physical support.

Mason Allen Medlam Foundation for Autism Safety

Wandering and drowning are leading causes of death for children with autism, who often have limited communication abilities, impulsive behaviors, and a lack of a sense of danger. On July 27, 2010, Mason Allen Medlam, a 5-year old non-verbal boy with autism, wandered away from his home and drowned in a pond. His family has set up the Mason Allen Medlam Foundation for Autism Safety to prevent future deaths due to wandering, which is a major problem among children with autism. The family is advocating for a Mason Alert that would provide authorities with a registry about children who are at risk for wandering so they can be found more easily. You can sign their petition here.

Wretches & Jabberers: And Stories from the Road

Facilitated communication users Larry Bissonnette and Tracy Thresher star in the documentary Wretches & Jabberers: And Stories from the Road, directed by Oscar winner and twice Academy Award-nominated filmmaker Gerardine Wurzburg, who also directed Autism is a World. Both Bisonnette and Thresher can speak the words that they type.

During their globetrotting tour Bissonnette and Thresher visited Chammi Rajapatirana in Sri Lanka, Naoki Higashida in Japan, and Antti Lappalainen and Henna Laulainen in Finland, who all also communicate through supported typing (watch the movie trailer here).

See a video of Chammi typing independently here.