Today was World Autism Awareness Day and the autism charity, Spectrum Possibilities, continued its initiatives to support families coping with this disorder.
One such initiative was the establishment of an advocacy arm within the charity, to facilitate pro bono legal representation on human rights issues for families coping with autism spectrum disorders.
The directors of the charity, Deborah Thompson-Smith and her husband Larry Smith, are of the view that although there is increasing awareness about the disorder in general, there is a significant lack of awareness about the real needs of the families coping with it and the absence of a meaningful policy response to meet those needs.
For too long, they pointed out, the issues facing families coping with the disorder have remained invisible and this could no longer be considered acceptable. They explained that many human rights concerns had gone unaddressed and the time had come for this to change.
These concerns include, inadequate allocation of resources for early screening and diagnosis of the disorder; lack of priority for the earliest possible intervention; inadequate access to therapies and education for all persons with Autism Spectrum Disorders across the lifespan; failure to manage the health and education systems towards immediate support for families; discrimination within the education system against those who may not be potty-trained due to medical or physiological reasons.
With the recently reported increase in the rate of the disorder in the United States by the Centres for Disease Control and Prevention to one in 50 children (a 72 per cent increase across four years), and with a dearth of information on the incidence of the disorder in Barbados, the directors said they believed there was “a real and increasing need to comprehensively address the inadequacies in our health, education and social care systems, which sustain the invisibility of persons with Autism Spectrum Disorders and their lack of access to much needed resources”.
“Many individuals with autism are unable to verbally articulate their needs and therefore parents and caregivers have to be advocates for them,” they said in a statement for in recognition of the day.
“Cultural practices, prejudice, stigma and maintaining low expectations for persons with disabilities like autism, rather than facilitating their best life-outcomes, have contributed to the lack of development of a meaningful and responsive legislative framework for protecting the rights of persons with autism to access the best education, therapy, treatment and human resource capacity and career development.
“The directors of this charity are therefore seeking to facilitate a collaboration of civic-minded people, including attorneys-at-law, parents and caregivers and professionals in the field of autism treatment and intervention to address the human rights issues of families coping with autism in Barbados.”