In Chautauqua County, a number of organizations assist people with autism spectrum disorder and their families, but they haven’t really worked collaboratively.

Determined to reverse that trend and provide a more coordinated approach to addressing autism in the local community, several organizations have come together to hold the area’s first Informational Summit on Autism April 9 and 10.

“We decided to put something together that would be relevant for everybody,” said Mary Rockey, The Resource Center’s director of educational services and staff training, “something that pulls the different directions that we’re going in under one umbrella.”


The workshop’s first day will be held at the Chautauqua Suites in Mayville and will feature three concurrent sessions. Day two will be held in the Lenna Center at Chautauqua Institution and will consist of a daylong presentation by William Stillman, who is the founder of the Pennsylvania Autism Self-Advocacy Coalition and a person who experiences life through the autistic spectrum.


William Stillman

The concurrent sessions to be held April 9 include “Dance of the Broken Brain,” in which psychologist Robert Ellis will discuss how processes such as attention, memory, self-talk, emotional control and problem solving should be taught to people with cognitive limitations; “Autism Everyday!” a parent panel discussion facilitated by Toni Gage, a local representative with the national organization Autism Speaks!; and “Teaching the Way We Learn,” in which Dr. Rockey, a board-certified behavior analyst, will discuss strategies and techniques for parents and classroom teachers on how to teach children with spectrum disorder.

Participating in the parent panel will be Michael and Lisa Carey, who used the death of their 13-year-old son as the impetus to help drive passage last year of Jonathan’s Law, a New York State statute requiring residential care facilities to provide parents and guardians greater access to records involving residents. Jonathan Carey, who had autism, died while being restrained by employees of a state-run residential facility, and in their quest to discover what had happened, his parents were unable to gain full access to records of incidents involving their son and allegations of his mistreatment at a privately run facility where Jonathan previously lived.

The three concurrent sessions will be held from 1:00 to 2:45 p.m. and will be repeated from 3:00 to 4:45.
Stillman’s April 10 presentation is titled “Demystifying Autism from the Inside Out.” Attendees will gain a greater understanding of those who live in the autism spectrum and will learn best-practice approaches through an overview of the differences and similarities among people with regard to communication, social interaction, sensory, learning and movement.



The Resource Center’s Mary Rockey and Robert Ellis employ applied behavior analysis in teaching a boy with autism spectrum disorder. Drs. Ellis and Rockey will be two of the presenters at Chautauqua County’s inaugural Informational Summit on Aut ism.



Dr. Rockey explained that “autism spectrum disorder” is an all-encompassing term for people who have problems in the areas of communication, social skills and “passions for specific things – we call it ritualistic behaviors.” She cited as examples someone who repeats the same hand movements, or a person who can tell you every statistic involving the Buffalo Bills.

Given such a broad definition, it perhaps shouldn’t be surprising that the incidence of autism is relatively high – one in 64 males are diagnosed with autism, as are one in 150 females, Dr. Rockey said.

She became interested in the topic a number of years ago when, as a foster parent, she opended her home to a boy with autism.

“He was an enigma, and I really wanted to learn to understand how he processed the world,” Dr. Rockey said. She ended up doing her doctoral dissertation on autism spectrum disorder. “It’s actually now a lifelong passion.”

Autism also is a lifetime commitment for Mrs. Gage, who has two sons with the disorder.

“With autism spectrum disorders, there are no two the same,” she said. “Everyone falls into the spectrum differently. And even having two boys that are on the spectrum, they both have a lot of similarities, but they also are worlds apart from each other.”

Mrs. Gage said dealing every day with a family member with autism can be challenging.

“As a parent, living with children that are on the autism spectrum for me is like being on a never-ending rollercoaster ride. There are moments of normalcy that are shattered with disappointment and despair at any given moment. I have learned as a parent that to survive, I will have to take action. I will have to reach out, speak out; I will have to never give up, never stop looking, never discount an idea, and never stop listening.”

And yet despite the challenges, Mrs. Gage sees positives in having children with autism.

“It is also a gift. I have been given two beautiful children that are on the autism spectrum. My 8-year-old son was born with brown hair and blue eyes; I would no sooner change that than I would change his autism. I no longer look to cure it, I just want to accept him the way he is, and I want the world to accept him the way he is.”

She credits Stillman with changing her attitude toward autism.

“Autism is not my enemy; it used to be,” Mrs. Gage said, explaining that her viewpoint changed after attending one of Stillman’s workshops. “One of the greatest things that he did for me as a parent is taught me how to respect my children. My job is to help guide them and teach them in life, but to accept them for who they are, not to try to change them. And through his eyes I just was able to see that I no longer want to cure my sons’ autism. They’re going to live with it their whole life. I want to help them to overcome any challenges they may have while allowing them to be the people they are.”

She related an example in which Stillman imagined a scenario of a couple and their child traveling to Children’s Hospital in Buffalo and receiving the diagnosis that the child has autism. The parents may be devastated and feeling overwhelmed on the drive back home. But Stillman pointed out that the child in the back seat is exactly the same as he or she was on the drive to Buffalo; the only change is the parents’ perception of the child after receiving the autism diagnosis.

Mrs. Gage emphasized the need for the community at large to change its perception of people with autism. As an example, she said that her youngest son has difficulty dealing with noises (some of which most of us take for granted, such as the hum of fluorescent lights), and that his way of coping is to flap his hands. This behavior can attract a lot of attention.

“The stares and looks that you get from people can sometimes be very intimidating,” she said.

Mrs. Gage added that, as with other types of disabilities, there is a tendency for members of the public to assume that her children have cognitive disabilities. She urged people to “presume intellect” when they first encounter people with disabilities, and she credited Stillman’s successful career with allowing her to believe that her two sons will also enjoy rich, productive lives.


“He gives parents like myself a lot of hope for the future,” said Mrs. Gage. She explained that with her three other children, it’s easy for her to envision what lies before them – formal dances, graduations, weddings. “With a fair amount of certainty, I can say that those things are probably going to happen. My vision gets very cloudy when I look at my two sons because I don’t know what the future holds for them. Mr. Stillman, I think, gives me hope that my two boys can grow up to lead a very successful life.”


Dan and Toni Gage and their son Daniel.

The Informational Summit on Autism is geared toward a wide audience – family members, educators, students, health care professionals, and those working in the field of autism. Registration for the workshop is $50 until March 15 and $60 after that; the price for senior citizens and students is $30. The cost includes continental breakfast and lunch on the day of Stillman’s presentation. Chautauqua Suites is offering special lodging rates for conference attendees; for information, phone 269-7829.

Sponsors of the Informational Summit on Autism include The Resource Center, TRC Foundation and The International Order of the King’s Sons and Daughters. For more information or to obtain a workshop brochure and registration form, phone 485-7231.

Comment

Does your child seem different from other children? Are you concerned that he or she may be lagging behind other children developmentally? The Resource Center conducts free autism and developmental screenings to assess whether children are developing as the should. For information, contact Carol Peterson, TRC’s Central Intake Counselor, at 661-1058.