Critical autism supportWednesday, April 01, 2015
By SARA FRANCIS
April is World Autism Month. According to Dr Andrea Garbutt, developmental paediatrician, autism is a developmental disability and can be described as a condition where an individual experiences difficulties with communication and social interaction coupled with the presence of unusual behaviours. Persons may demonstrate varied manifestations but a diagnosis is given only when these challenges are sufficient to cause functional problems.
The Jamaica Autism Support Association (JASA) is primarily a support group for parents of children diagnosed with autism. There are monthly meetings where families share stories and provide support. In addition to offering a support system for autism-impacted families, JASA aims to raise awareness in Jamaica about the condition. It also acts a resource base where families can get information about programmes that their children can benefit from.
No two persons with autism are the same. Persons with autism may be at different levels and range, from very mild to severe. Around one in 68 children have an autism spectrum disorder. Because this condition is four to five times more common in boys, one in 42 boys, and one in 189 girls born will have autism spectrum disorder. This means many families will continue to be impacted, and awareness is therefore critical. This makes groups such as JASA very necessary.
Some parents and grandparents have been with JASA for years. They will tell you that JASA has been a lifesaver, and group meetings provide a space to vent, laugh and cry.
My son has not been diagnosed with autism, and although he has characteristics that run contrary to autism, there are few traits that are similar. As such, I could relate to some of what was shared as we gathered recently in a loving space at the YMCA, where parents from all walks of life came to share and give support regarding autism's impact on their lives.
There is shared excitement when there is a testimony of another milestone achieved. It is a space where parents can freely relate challenges that they may be having, for example potty training, and all other parents will jump in with tips.
Hope fills the air when a parent shares that what another may be going through is only temporary. I personally benefited from discussions about schools and the important role of the shadow. All in all, participation in this group says, 'I am not alone', and this lends tremendously to how well each family copes in their daily lives.
"We aren't even on the burner, much less on the back burner," says JASA co-founder Kathy Chang of government support.
She said the continued effort to fund intervention strategies out of pocket is strenuous even for those who can afford it. There is a consensus that Government funding or even insurance coverage would make a big difference in assisting parents to afford speech and developmental therapy, the absence of which may mean a child not achieving his full potential.
The camaraderie shared in this group proved to me how important a support group is. JASA is really a forerunner and I wish that more special needs groups would be as organised.
My appeal is, if you suspect that your child may have autism, have them assessed and do not be in denial. This is important as early intervention strategies can make a very big difference in how your child will fare as an adult.
Find out more about JASA at www.jamaicaautism.org. I also encourage you to view testimonials on YouTube by searching for Jamaica Autism Support Association.
Sara, mom to five-year-old Amari, is an advocate for children with developmental delays. Amari was born three months early at one pound, and was hospitalised for three-and-a-half months after birth. E-mail her at firstname.lastname@example.org.