Since learning of her son Matthew's diagnosis of autism in June 2001, Evelyn Ain of Oyster Bay has become a relentless advocate for autism awareness. Finding the right services for Matthew, who was diagnosed specifically with PDD-NOS, was just the beginning. In a short time she has lent herself to several hospitals, schools and organizations around New York and in April 2004, published her first issue of LI Spectrum magazine. Based in Hicksville, it is the first-ever publication for parents of children with autism and developmental disabilities.
In less than a year, what began as a Long Island-based magazine has doubled from a circulation of 30,000 to 60,000 and earlier this month, Spectrum was launched nationwide. Spectrum, which is run out of an office on North Broadway, is currently published bi-monthly and focuses on all facets of the autism community and includes news, lifestyle stories, community resources and book reviews, among other topics.
"It's a lifestyle magazine," said Ain. "We don't talk about anything other than the best way to advocate for your child, available resources, networking and all of the things you would do with regular child that you now need to do with your autistic child." She added that the magazine's name, Spectrum, is prevalent in the autistic world. "In the autistic world, when we say that we have a child with autism, spectrum is the huge array of where a child falls into. It is the spectrum of it."
According to Ain, the magazine is important because "Autism is the fastest growing epidemic - period. It's faster than research can come back with information. Faster than teachers, doctors and researchers know how to deal with." She added, "On Long Island, autism cases have doubled in the past six years while more than one million people in the United States have some form of the disorder. At this rate, no family will be left untouched by autism with statistical estimates reaching 1 in 7 children diagnosed with autism by the year 2012. That's a serious number."
Ain utilizes her parent advocacy and networking experience to bridge the gap between the growing special needs population and the latest news, education and lifestyle issues surrounding autism and developmental disabilities that educate and inform. In addition to serving as publisher, Ain is also a frequent contributor with a hands on approach when it comes to editorial content.
Aside from the print world, Ain also shares her knowledge by co-hosting a weekly radio show. Special Talk USA, with radio veteran Adriane Berg, airs live every Saturday at 4 p.m. on WLIE 540 AM and focuses on individuals with all types of disabilities and where they can go for help. Ain has also been featured on various television segments and has been written about in many articles.
The first ever "A Cruise for Autism," a five-day Carnival cruise, will take place in June and there are plans for a trip to the Bahamas in November. Both trips are geared for families who have children with autism and other developmental disabilities. Through these trips, children participate in fun-filled daily activities that will include arts and crafts, games, sports and music while their parents will have a rare chance to share quality time together in a worry-free environment as they engage in a wide array of daily and nightly entertainment.
"Parents of children with developmental disabilities are always faced with the risk of being judged because of their children's misunderstood actions and behaviors," said Ain. "[These trips] provide a venue in which those families can meet and bond with one another - offering them a support system in an environment in which they can feel comfortable and understood. It also provides them with the rare opportunity to spend quality time together with peace of mind in knowing that their children are receiving the proper and necessary care."
Ain's advocacy initiatives also include spearheading fund raising efforts to raise money for the DiRoma family of Westchester to accompany their son, Greg, to Japan as he competes in the 2005 Special Olympics World Winter Games and taking Tammy Maier and her autistic savant 15-year-old daughter Brittany of South Carolina under her wing. Doing so resulted in Ain cultivating a chain of generosity and community support that enabled Tammy to move to New York so Brittany can receive specialized and individualized programs and services that will not only foster her exceptional talent in music, but more importantly, life functioning skills.
While the magazine provides vital information to families with special needs and shedding light on the challenges they are faced with everyday, Ain is also fighting in the trenches for more education and programs to be offered to children with developmental disabilities. Her one voice is breaking the sound barrier on behalf of all families with developmentally disabled children - lobbying the travel industry for more accommodations to be available for people with developmental disabilities.
For her tireless charitable work she has received citations from State Assemblyman Harvey Weisenberg (D-Long Beach) and Oyster Bay Town Clerk Steve Labriola and was recently declared this year's honoree for Project Residential Experience in Adult Living's (REAL) 25th Anniversary Inspiration Ball. Ain will receive the Inspiration Award from Project REAL at its Inspiration Ball on Thursday, April 14 at the Garden City Hotel.
"As a tireless advocate for patient and family rights, Evelyn recognizes the connection between education, awareness and the critical support that is needed for individuals who are psychiatrically challenged," said Ira Krause, chair of the Inspiration Ball Committee and a Project REAL board member. "It is her passion, reach, and incredible resources that make her this year's Project REAL honoree."
Moreover, Ain is actively involved with raising awareness among elected officials on the local and national level to obtain better programs and support for autistic and developmentally disabled children. She currently serves as a co-chairperson for the North Shore/Long Island Jewish Health System Autism Committee, creating campaigns and planning events to raise community awareness about autism. In addition, she serves as a co-chairperson for Association for the Help of Retarded Children's (AHRC's) Reach for the Galaxy Campaign, which provides funding for essential education tools not covered by the state budget, and is a member of Developmental Disabilities Institute's Business Advisory Board. Most recently, she was appointed by the Commissioner of the Nassau County Health Department to serve on the Early Intervention Coordinating Council for a term that ends on Dec. 31, 2006.
The cover price of Spectrum is $5.99 per issue or $29.95 for a year subscription (published bi-monthly.) For more information on Spectrum Publications and its magazines call 933-4050 or visit www.spectrumpublications.com.
(Editor's Note: The following information is courtesy of the Cure Autism Now Foundation [www.cureautismnow.org], The National Alliance for Autism Research (www.naar.org) and the Autism Society of America [www.autism-society.org] websites.)
Autism is a complex brain disorder that often severely inhibits a person's ability to communicate, respond to surroundings and form relationships with others. As a result, children and adults with autism typically have difficulties in verbal and non-verbal communication, social interactions and leisure or play activities.
In some cases, symptoms of autism are present for some children from infancy while other children seem to develop normally for their first year or so and then begin to slip away into a private world where social norms do not exist.
First identified more than 50 years ago, autism is typically diagnosed by the age of two or three and is four times more prevalent in males than females.
Autism affects people of all racial, ethnic and socioeconomic backgrounds. Few disorders are as devastating to a child and his or her family. While some people with autism are mildly affected, most people with the condition will require lifelong supervision and care and have significant language impairments. Many children with autism will never be able to tell their parents they love them. To make matters worse, although more and more individuals are being diagnosed with one form of autism or another, the cause of this disorder is still unknown.
Today, autism is believed to affect 1 in every 166 people and there is currently no known cure.