Dear Friend: The following article, Autism at the Crossroads — about the International Coalition for Autism and all Abilities and the work they are doing — was at one time available as a PDF file through the Scribd hosting service. It has since been replaced by a text version. My apologies for any confusion. As the article's author, I would like to extend my personal thanks to Emily and Matt Malabey, and the other ICAA board members, for their due diligence, kindness and willingness to share with me their vision of making the world a better place for people with ASD. The time is ripe. — Steve Rensberry (9/8/2010)
By Steve Rensberry
Imagine a world in which people are transparent, not physically but in terms of their purest emotions and needs, and in a way that lays bare the phenomenal array of cognitive complexities that make each individual human being so remarkably distinct and unique.
Assuming that privacy was somehow still respected, ask yourself, would it make the world a better place? Would it lessen or increase the societal barriers preventing those with challenges from realizing their full potential? Would it raise the level of empathy and understanding in our society toward those who are different or have special needs, or would it—as befits the less redeeming side of human nature—lead to even more discrimination and abuse than already exists?
You make the call, but the uncertainty of how people would react in such a scenario points to the ongoing challenge society faces in relating to those perceived to be outside the ordinary, and to the subject of this story—which is about the estimated 1 percent of Americans referred to in clinical terms as having an Autism Spectrum Disorder (ASD), and about one non-profit group's determination and vision to change things for the better. That group is the International Coalition for Autism and all Abilities (ICAA).
No, people along the spectrum are not transparent. But they are, advocates say, stereotyped, gravely misunderstood and frequently discriminated against.
For the ICAA, based in Arnold, Missouri, it's a situation that sorely needs to be addressed.
The autism spectrum itself takes in a wide swath of non-orthodox behaviors and characteristics and is divided into three main forms: Autism, Asperger's Syndrome and Pervasive Development Disorder Not Otherwise Specified (PDD-NOS).(1)
Estimates put the number of people in the United States living with some type of ASD at between 1 and 1.5 million, for which neither a cause nor a cure is known. It is no respecter of race, age, culture or creed and is manifested in varying degrees in limitations in speech, social development and in some motor skills and sensory processing.
Launched this year, the ICAA maintains a website at www.internationalautismcoalition.org/ where it offers practical assistance, posts action alerts and conducts weekly blog talk radio broadcasts. Its founders—Emily Malabey and her husband, Matthew—were active as was the group in rallying for the Missouri Autism Insurance Bill, have dared to carve a different path than the more established and heavily-funded research-focused groups, and have received encouragement and support from a growing number of advocates and supporters. Among them are:
- Estee Klar — Founder and executive director of "The Autism Acceptance Project" (TAAP). Klar is a writer, freelance curator of art, and graduate student of Critical Disability Studies at York University. (2)
- Melissa Barton — A Florida mother who made national headlines in 2008 after a discrimination case at her son's school. Barton was one of the first guests on the BTR ICAA Radio program.
- Senator Eric Schmitt — A Missouri legislator who fought along with other lawmakers and the ICAA for passage of the Missouri Autism Insurance Bill, which requires insurers in the state to cover treatments and related therapies for persons with autism.(3)
- Massachusetts Senator Brian Joyce — An ICAA blog talk radio guest who spoke about controversial treatments for autism at the Judge Rotenberg Center.
- Erik Estabrook — An advocate and author with Asperger's syndrome who has collaborated with the ICAA in a number of areas.
- Kimberly Salls, BCBA, MA — Founder of Behavior Intervention Services in St. Louis, Mo., which provides help to persons with autism and their family members, along with other forms of behavior intervention.(4)
- Tonya and Rickie Lee Tanner — Rickie Lee Tanner is a popular country music artist and songwriter with a growing list of fans. The couple has an autistic child and have been very supportive of the ICAA. (5)
- Areva Martin — An award-winning author, attorney, speaker and TV personality. Martin has been a guest on the ICAA Radio program and is well known for her advocacy on autism. (6)
- Carol Warner — A sociology professor and city councilwoman in Fairview Heights, Illinois, and the mother of an adult son with Asperger's syndrome. She serves on the ICAA's Advisory Board.
- Chief Gene Sanders — Founder of Project Lifesaver International and a presidential award nominee. PLI is a volunteer, non-profit program whose primary mission is to aid in the rescue of persons who wander due to Alzheimer's, autism and similar disorders.(7)
"Discrimination based on race. Discrimination based on disability. Loved ones being locked up and locked away. This is reality for many people, even in America—in the year 2010. In the autism community in particular, our loved ones and friends are particularly vulnerable to these abuses, " says an episode note about the radio show with Alexander.
"Lisa's son Neli has faced serious brutality, abuse and discrimination based on his disability and race," Malabey says in reference to the show.
Meeting recently at a Bread Co. restaurant with the Malabey's children—Matthew, 8, who has autism, and Erica, 6—along with Advisory Board Member Rev. Ann Bukalski and ICAA Vice President Julian Bukalski, Emily and Matt look the perfect couple and their kids as beautiful, loveable and happy as can be.
Matthew, though he did not speak, radiated charm and gave the impression that he is smart and "in the know."
To this observer, Matthew’s autism was neither obvious nor inhibiting. Both children were excited and energetic—and surprisingly well behaved and patient for being in a public place among a group of serious-talking adults. Emily's auburn hair is long and striking. Matt is tall and fit. Both are articulate, engaging and passionate about what they do.
Emily is studying law at Webster University, in addition to her work as a professional lay advocate and mediation specialist. Matt is a consultant for a specialties apparel company and an independent consultant at MM(2).
"My husband and I knew from very early on, as many parents do, that our child was different, and that he was not reaching various developmental milestones," Emily Malabey said. "The Denver Screening, First Steps program, Parents as Teachers program, and perusing several libraries worth of reading material on child development and the Autism spectrum, we were pretty much expecting the diagnosis from the neurologist."
But with the diagnosis came the eventual realization of just how far behind the curve American culture is in reaching out with understanding and with immediate and practical assistance to this particular segment of society.
"As time went on, I realized that step by step the various community, educational, social and medical systems in place were so very bureaucratic, confusing and just overwhelming. I knew that if this was overwhelming for me, a pretty resourceful person who does not mind research, and loves keeping myself busy all the time, most other parents without those traits must be going insane," Malabey said.
What separates the ICAA from other autism groups is primarily a matter of the here and now, of practicalities and immediate realities.
There are existing organizations spending millions trying to remove, prevent or find the cause of autism spectrum disorders. But the fruit of their labors could be years down the road. Some of that time and money is, unfortunately, even spent fighting among themselves.
How much focus is put on their physical welfare, on the human and civil rights of persons with autism and other such disabilities? Very little to none, according to the ICAA.
Its two-pronged mission:
1. Ensuring that people with disabilities get the help and support they need to access therapy, therapeutic equipment, products, services and other necessities so that they can live as independently as possible and reach their fullest potential.
2. Ensuring that modern society progresses enough to meet these people a little more than half way.
"ICAA believes ignorance, lack of supports and services are the true tragedy in society," Malabey said.
According to the group, about 1 in 91 children in Missouri alone are diagnosed with autism. Autism Spectrum Disorders also are widely considered to be the fastest-growing developmental disability in the country. The estimated $60-90 billion that is spent each year in care and treatment is projected to reach $200 to $400 billion in another decade.(9)
But despite its prevalence, fundraising by major awareness groups for autism amounts (on the high end), to less than $45 million a year, compared to more than $300 million for Leukemia, $175,000 for Muscular Dystrophy, $130 million for Juvenile Diabetes and about $400 million for AIDS. Published estimates of the amount of money directed toward autism in the National Institute of Health's annual budget were about 0.3 percent in 2005, or about $100 million of the agency's total $29 billion budget for that year.(10)
The agency's FY2010 budget report estimates expenditures of $136.77 million on what it terms "Developmental Transitional Research," aimed at preventing and curing any number of disorders that begin in childhood and adolescence.(11)
"High priority will be given to studies that identify early signs of risk and develop novel and targeted preventive and treatment interventions, such as projects involving innovative approaches for treating children who have attention deficit hyperactivity disorder (ADHD).
In FY 2010, NIMH will also support studies on psychosocial and behavioral treatments for autism spectrum disorders, as well as innovative services research, including the development of instruments to evaluate the impact of interventions on core features of autism spectrum disorders and co-occurring symptoms," the report says.
It estimates spending another $10.36 million on a program called Autistic Centers for Excellence, begun in 2007, to "maximize coordination and cohesion of NIH-sponsored autism research efforts."
But as promising and helpful to researchers as the ACE program may, its focus appears to be clearly on research rather than the immediate help that advocates arguefamilies and those with ASD need.
Thus, the concerns about care—and the accompanying controversies—continue to be a source of debate.
In the case of Barton and her son, who has Asperger's, the highly-publicized incident involved a teacher who had instructed Alex’s classmates to vote on whether Alex should stay or leave the classroom—which they proceeded to do on a vote of 14-2. The case provoked outrage around the country.
In correspondence by e-mail, Barton was upbeat and full of praise for what the ICAA is doing.
"I have learned tha there are some truly wonderful people out there like Emily, president of ICAA willing to step in and get their hands dirty," she said.
While Barton's son is able to utilize the McKay Scholarship to attend school, litigation remains pending followed a suit filed by Barton in the fall of 2009.(12)
"My son has Asperger's Syndrome. He is not a 'brat' and children with Autism/Asperger's need to be disciplined differently than other children," Barton said. "If we cure this ignorance, we win a battle of epic proportions and everlasting change."
ICAA Advisory Board member Carol Warner, whose son Michael, now 40, also has Asperger's, said he was in his early 20s at a time when Asperger's was far less known and was therefore beyond any treatment-related avenues.
"I agreed to serve on the ICAA board because general public awareness is crucial to acceptance of those individuals who suffer from this social disorder," Warner said. "Additionally, it is my private hope that through activities publicized by ICAA, social outlets for my son will be discovered."
As for the challenges of being a parent with a child who has Asperger's, they were precisely what anyone would image, she said.
"I want a worthwhile, happy life for my son, and his chances for that have been compromised throughout his life—first in school, later in social interaction/making
friends/dating, and today in the work environment, where promotions are elusive despite being a good, punctual, sometimes innovative and always dependable employee," Warner said.
Erik Estabrook, who joins the list of those with Asperger's Syndrome, is a regional committee member of the ICAA and an example of the importance of self-determination and establishing a network of support.
"I share a bond with the autistic community, because I've worked with so many people like me. I was a very late diagnosis at 21 years old, and didn't know what autism was at all at that age, Estabrook said." I began to find a support group around me, and learned more about autism by research. I set out to help autistic people like me when I was 24 years old, and still enjoy doing that now."
Growing up in a military family, Estabrook has worked as a volunteer with Army Community Service (ACS) for six years and for the past two years with an adaptive aquatics program. Nature, the parks, wildlife—all bring him a great deal of satisfaction. "Writing is great therapy for me," he said.
"ICCA is one of the more active groups that are about ending abuse of the disabled, and providing comfort and support to the abused," Estabrook said. "There still needs to be a lotmore faculties for treatment, therapy, and just places for autistics to go. I think the need in the autistic community is with the children. They have and always will be in need of behavioral support, treatments, therapies, and places where they can learn to get their words out and not feel alone."
For Emily Malabey, the battle Barton was drawn to engage in over her son's treatment at school was a pivotal moment in her decision to launch the ICAA. Malabey's son is the same age as Barton's.
Another pivotal moment came during a rally over the Missouri Autism Insurance Bill when someone called out her name at a booth staffed by the group Autism Speaks. When she
approached the booth, Malabey was handed a donor card asking if she would like to donate her son's brain matter at the time of death, to be used, Malabey recalls, "in the prevention and research for a cause and a cure and for preventative prenatal tests in the future."
"Regardless of where one stands on abortion, this handout at a rally for autism insurance legislation really bothered me," she said, one reason being that they (the ICAA) are not opposed to research but are simply trying to respond to the tremendous need for practical help and for "boots on the ground."
It’s apparent that no one, Malabey included, believes that changing public attitudes and policies will be easy, but neither are they about to give up—especially in light of the cases of abuse and discrimination which regularly surface. Some of these:
* On April 5, 2010, an 28-year-old autistic man by the name of Stephen Puckett was refused treatment at Oklahoma University Medical Center after an outburst in the hospital’s emergency room. Subsequently, the police were called and Puckett was arrested. He was kept on suicide watch and forced to wear a straight jacket for the three days that he was in jail. He was finally released without charges after it became obvious that it was medical treatment he needed rather than jail time.(13)
* In Tybee Island, Georgia, an 18-year-old autistic man, Clifford Grevemberg, was charged with disorderly conduct on May 21, 2010, after sitting down on the curb and placing his head in his arms. Police officers, thinking that Grevemberg was drunk, allegedly Tasered him twice and threw him to the ground before his brother intervened, explaining that Grevemberg was a special needs child and had never had a drink of alcohol in his life, in addition to having a heart condition that required regular monitoring. (14)
* Reginald Latson, 18, who has Asperger's Syndrome, was arrested on May 24, 2010, in Virginia and held for 11 days. Latson had been sitting by a tree waiting for a local library to open near a school when a call was placed about a "suspicious black male" who possibly had a gun. After getting into a scuffle with a school resource officer who was also a Sheriff's deputy, Latson arrested without bail and placed in isolation. A trial is pending. (15)
* On March, 20, 2010, 27-year-old Steven Eugene Washington, who has autism, was shot in the head and killed by police officers who said they thought that he was reaching for a gun. Washington turned out to be unarmed and was not committing any crime. (16)
* The use of restraints and exclusion rooms to control autistic children has been a major concern of parents and autism advocates around the country. Most recently these concerns lead to the creation of the “Preventing Harmful Restraint and Seclusion in Schools Act” (H.R. 4247, S. 2860). A bill passed the U.S. House of Representatives in March. It has not progressed in the Senate past a referral to the Senate Committee on Health, Education, Labor, and Pensions in December of 2009. (17)
* The institutionalization of autistic children has and continues to be a major concern, advocates say. The practice has met with an increasing level of criticism from parents and organizations concerned about abuses and the potential long-term harm of forcefully isolating and separating an autistic individual from their loved ones. (18)
* Aversion therapy is one of the more controversial practices used in the treatment of autism and consists of pairing any number of discomforts simultaneously with the subject's unwanted behavior. One of the foremost practitioners has been the Judge Rotenberg Education Center in Canton, Massachusetts, which has received intense criticism over its use of electric skin shocks. The center and the controversial techniques that it employs were the subject of a special ICAA radio broadcast on July 28. The group also released an extensive public statement about the center's practices. The United Nations, as well, added fuel to the fire this year by declaring the use of shock therapy on autistic children "torture." (19)
* The neglect and isolation experienced by many adults with ASD, due to the pervasive lack of understanding, is another long-standing problem and challenge that has yet to see any significant progress. (20)
The ICAA's Executive Board consists of Founder/President Emily Malabey, Vice President Julian Bukalski, Secretary Jacqueline Ward, Vice President/Treasurer Matthew Malabey, and Director of Public Relations Nathan Moore. Its Advisory Board consists of Noelle Collins, Carol Warner, Rev. Anne Bukalski and honorary Board Member Rep. John Scibak of Massachusetts.
What lies ahead? For the Malabeys and those on the ICAA Board, it's simply a matter of continued organization, hard work and hope. Right now they are engaged in a number of projects: Mind the Gap, focusing on educational advocacy services; Project Hope, focusing on donations, support, access to services, therapies and free to low-cost advocacy, and future monthly support groups; Project Safety, focusing on community accessibility changes, safety and risk management, property assessments and the work of groups such as Project Lifesaver International; ICAA Radio, focusing on outreach and public service information; and spreading the word through social networking sites such as Facebook, Twitter, MySpace and LinkedIn.
In Malabey’s words:
"All of us have gifts within us. Autistic people are no different. Some will excel and some will not. However, if we as a society wish to see more productivity, creativity, health, safety, wellness, happiness and peace, we should all be doing something to ensure the abuse ends. Let's ensure people who need extra help and support have access to those things. Let's ensure things like wheelchair ramps, fences around public playgrounds and parks, and project lifesaver programs are in place so all people can participate in our communities. Society will have to grow and learn how to communicate with people with differences.
"For people who look at this as a fiscal issue, look at the cost it will be to society if we have millions of dependents and possible homeless citizens, as compared to what it will be if we take actual measures right now to include, accommodate and support all of our citizens. Even if this is a vaccine induced pandemic, what are we doing to ensure the people who are here, who are on the autism spectrum, are helped, included and supported in this world when all us parents are gone?"
The fact that people on the spectrum can be successful—phenomenally so in some cases—is apparent in the acknowledgment by a number of famous people that they have, throughout their lives, lived with some type of Autism Spectrum Disorder. Among these are Oscar-winning filmmaker Steven Spielberg, actress Daryl Hannah, and comedian/actor Dan Aykroyd. (21)
Regardless of the amount of government funds going toward research, people along the spectrum need advocacy, services for education, accommodations, and therapies that are available at all stages, Malabey explained.
The bottom line: "Help people now."
References:
(1) www.autism-help.org/
(2) www.esteeklar.com, www.taaproject.com/
(3) The bill was signed on May 10, 2010 and goes into effect on Jan. 1, 2011
http://insurance.mo.gov/consumer/autismFAQ/
(4) www.behaviorinterventionservices.com/
(5) www.rickieleetanner.com/
(6) http://www.arevamartin.com/
(7) http://projectlifesaver.org/Lifesaver/about/what-we-do/
(8) www.blogtalkradio.com/icaa/page/1; www.internationalautismcoalition.org/
(9) www.tessera.org/autism.html
(10) www.autismspeaks.org/naar_history.php
www.autismspeaks.org/inthenews/high_cost_of_autism.php
www.autismspeaks.org/whatisit/facts.php
www.autism-society.org/
www.hsph.harvard.edu/news/press-releases/2006-releases/press04252006.html
(11) www.nimh.nih.gov/about/budget/cj2010.shtml
www.talkaboutcuringautism.org/autism/latest_autism_statistics.htm
(12) http://blogs.palmbeachpost.com/opinionzone/tag/melissa-barton/
(13) http://newsok.com/autistic-oklahoma-city-man-jailed-on-hospital-assault- complaints-wont-be-charged/article/3453296
(14) http://savannahnow.com/crime/2010-05-23/autistic-man-tazed-tybee-family-says
(15) www.essence.com/news/hot_topics_4/autistic_african-american_teen_held_by_police.php
(16) www.huffingtonpost.com/2010/03/23/steven-eugene-washington_n_509392.html
(17) “Preventing Harmful Restraint and Seclusion in Schools Act” (H.R. 4247, S. 2860) www.crisisprevention.com/Resources/Webinars/Keeping-All-Students-Safe-H-R-4247-and-S2860/Questions (sorry: link is broken)
http://aprais.tash.org/CallToAction.htm
www.thomas.gov/cgi-bin/query/z?c111:S.2860:
www.thomas.gov/cgi-bin/query/z?c111:H.R.4247:
www.medhelp.org/posts/Autism/Stories-of-Seclusion-and-Restraint/show/720618
(18) www.caica.org/
www.nytimes.com/2004/10/22/health/22autism.html
(19) http://en.wikipedia.org/wiki/Judge_Rotenberg_Educational_Center
www.minddisorders.com/A-Br/Aversion-therapy.html
See: ICAA Public Statement on the JRC at www.internationalautismcoalition.org/
www.disabilityscoop.com/2010/08/03/restraint-senate-iep/9615/
(20) http://autism.emedtv.com/autism/autism-in-adults.html
(21) www.child-autism-parent-cafe.com/famous-people-with-autism.html
