A KIRTON couple have criticized the lack of support for families of children with autism in the Boston area. Their action does not end with criticism. Sharon and Neil Walters set up a local support group Special Friends for Special Needs a year ago to fill the void and give help and advice to concerned parents. “It’s outrageous just how little help there is for parents of children with autism,” said Sharon. “For a parent with an autistic child, it seems like there’s no help around here. Local pediatricians are good with diagnoses but I think the lack of after-care for dealing with the condition is an issue.” When a child has autism it affects the whole family.
Autism is characterized by impaired social interaction, problems with verbal and non-verbal communication and unusual repetitive or severely limited activities and interests. Autistic disorder is the most commonly known type of ASD, but there are others including pervasive development disorder – not otherwise specified as Asperger’s syndrome. These three conditions along with Rett syndrome and childhood disintegrative disorder make up the broad diagnosis category of pervasive developmental disorders. One in 88 children is diagnosed with an autism spectrum disorder, or ASD, by age 8, according to a study released by the U.S. Centers for Disease Control and Prevention — a rate that has risen far above the 2006 estimate of 1 in 110.
Shema Kolainu – Hear Our Voices (SKHOV) shares information and news, links and the latest research with families through many different venues such as workshops, conferences and individual parent training. SKHOV holds workshops for parents and families on daily livings skills topics and other topics to help the whole family with their child with autism. See our list of workshops here. Additionally SKHOV, along with ICare4Autism is sponsoring an international autism conference in August 2012. See the conference site for more details.
The CEO and Founder Dr. Joshua Weinstein of both SKHOV and ICare4Autism is set to complete a 50 million dollar Global Autism Center to be located on Mt. Scopus in Jerusalem in 2015. The goal is create opportunities for powerful collaborations that will bring better methods of detection and treatment to patients and their families all over the world. The Global Autism Center has 4 core elements: ICare4Autism INSTITUTE, a global research center, ICare4Autism MODEL SCHOOL, applying the latest research to meet the educational needs of students with autism, ICare4Autism ACADEMY, the world’s first advanced professional school of autism studies and ICare4Autism FOUNDATION, engaging a global community of autism scientists, educators and advocates.
Why is one central agency imperative? To assist parents dealing with the same issues as the Walters’ worldwide. Soon the Walters will be able to connect Special Friends for Special Needs to parents in India, Canada, Israel, Brazil, China, The United Kingdom and more. The Walters situation is a confirmation and personal example of the research we have found at ICare4Autism.
The couple said some of their members were upset that when their children were diagnosed with autism, all they received was a letter from the pediatrician confirming the diagnosis and some leaflets. Sharon said: “As a parent, it’s devastating to be told your child is diagnosed with a life-long condition and you go through a lot of guilt, asking if there was something you did wrong.” The couple said they feel more should be done following a diagnosis, to offer referrals and advice on where families can get support.
Special Friends for Special Needs now offers support for families of children with autism, attention deficit hyperactivity disorder (ADHD), Asperger’s Syndrome and other development disorders. It currently has about 30 members in Boston and the surrounding areas. Neil said: “Through our group we can offer one-to-one help and advice and are always on the end of the phone. Our aim is to get people on the right track to make their lives a little easier.”
The group holds a monthly get together for their members where children and their families affected with the conditions are invited to a special bowling night at Boston Bowl. This is held on the first Thursday of the month. “As a group we can help people answer questions they might have,” said Sharon. “We are not experts but our seven-year-old daughter Demi-Lee, who diagnosed aged two with autism, Asperger’s and AHDH, has given us five years’ experience in dealing with those disorders.” Neil added: “We want to pass on what we have learnt to parents in the area and let people know we are here to offer support – we are a non-profit group and just keen to help others in a similar situation.”
If you are in the Boston area, or to contact the family directly, you can email them at firstname.lastname@example.org.