Dear Ms. Geranpayeh,
On behalf of the Association for Science in Autism Treatment (ASAT), we would like to commend you for your article, “Reality of living with autism in UAE.” By responding to your article, we hope to further disseminate the information you shared and to promote awareness of autism-related issues across the globe.
Your article depicts how, although autism is becoming more prevalent on a global scale, there remains a lack of compassion and insight into the struggles of individuals with autism and their families. This point is illustrated by your description of four individuals with autism, whose mothers were interviewed. Two individuals were described as being nonverbal or minimally verbal, and two other individuals were described as being “high functioning.” Unfortunately, as you mentioned, each of these individuals and their families are often treated poorly by people who don’t understand the nature of autism. This lack of understanding and respect then exacerbates the mental, physical, spiritual, and financial stressors these families may already be experiencing due to having a child with autism in the family.
We appreciate your effective portrayals of some of the reactions that family members of the four individuals have had to endure. One parent reported being blamed for her child having a disability, and was told that it was because of her sins that she “…had a child like this,” and that poor parenting was to blame for her child’s behavior. You explained how family members, including parents and siblings of the child with autism, lost friends and other social contacts due to perceptions about the child with autism. You shared common concerns for families, including the ending of services in UAE when an individual with autism reaches the age of 18 and the high expense associated with obtaining services from specialists in the field of autism. ASAT shares those same concerns. Parents, as well as individuals with autism who were interviewed for this article, asked that they not be judged or criticized by others, but rather be treated with respect. By allowing parents to express these concerns through your article, we hope that the broader community will consider providing increased support to families in these areas.
Several of the issues that you touched upon which affect families of children with autism in UAE, also affect many families in other parts of the world. For example, a 2012 study in Pediatrics reported that, compared with youth with other disabilities, youth with autism spectrum disorder (ASD) were reported to have the lowest rates of employment and the highest rates of “no participation” in either education or employment (Shattuck et al., 2012). In another study in Autism, it was found that 92% of scientists and 95% of parents reported a high level of perceived stigma (Fischbach et al., 2016). In fact, the results showed a significant amount of isolation and rejection reported by these parents. Avoidance by other children of the child with autism, and being left out of activities by other children, were also reported by a majority of the parents in the study.
The mission of ASAT is to promote safe, effective, and science-based treatments for individuals with autism worldwide; we care deeply about the well-being of individuals with autism and their families. Not only is it crucial they receive access to treatments backed by scientific evidence, which can facilitate an increase in skills that may be socially significant for them, but it is equally essential that every individual with autism and his/her family receive the support and respect they deserve. We are grateful for your eye-opening accounts of some of the views on individuals with ASD in UAE, and the concerns many families face around the globe. The rise in autism prevalence worldwide, combined with an often limited understanding of autism by the general public, underscore the need for increased opportunities to advance universal autism awareness. Thank you for the opportunity to share and respond to your article. This is just one way we hope to encourage understanding.
Sincerely,
Christopher E. Smith, PhD, BCBA-D and Renee Wozniak, PhD, BCBA-D
Association for Science in Autism Treatment
References
Fischbach, R. L., Harris, M. J., Ballan, M. S., Fischbach, G. D., & Link, B. G. (2016). Is there concordance in attitudes and beliefs between parents and scientists about autism spectrum disorder? Autism, 20(3), 353 – 363.
Shattuck, P. T., Narendorf, S.C., Cooper, B., Sterzing, P. R., Wagner, M., Tayor, J. L. (2012). Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics, 129(6), 1042 – 1049.
