Share Magazine Summer 2016
How can we support black and minority ethnic parents of children with autism?
Shubhanna Hussain-Ahmed, Parent Carer
When our youngest child was diagnosed with Autism Spectrum Disorder at the age of 3, one of the greatest difficulties my husband and I faced was not around accepting his diagnosis, nor was it about the uncertainty of a future that lay ahead of us. Instead, our biggest difficulty was finding a way to explain what our child was going through to members of our family, many of whom did not speak or understand English.
I would like to think that I am a fairly fluent Urdu and Punjabi speaker, but even I found it hard to articulate what autism, delayed development, sensory overload and learning disability was to my non-English speaking parents and extended family. Even Google, my oracle for all of life’s big questions, had no answers for me this time.
There were no resources or experts who could advise us on how best to explain the needs of a child with autism to non-English speaking families. We needed our families and members of our community to understand that our child was not suffering from an illness, that there wasn’t a cure for his “condition”, that a home remedy was most probably not going to help, and that sacrificing a goat was definitely not an option. It was then that we came to a realisation that what was needed was not an Urdu translation of the medical model of autism. Instead, we needed our families to understand that our child’s view of the world was a little different, that he would learn at his own pace, that certain noises and textures were too overwhelming for him, that his quirky routines made him feel safe and, that there was a possibility that he may never be able to hold a conversation in Punjabi, Urdu, or English.
It has not been easy, but almost 4 years on now, and our son has made some amazing progress since he was first diagnosed. Our immediate family are now much more aware of our child’s needs through watching how we interact with our son and advocate for his needs. We feel blessed that we are surrounded by family and friends that provide a supportive non-judgemental environment which has enabled our little boy to grow and develop without any fear of being different.
Outside of our immediate family however, I feel that there is still a lack of understanding about autism. This is quite apparent, particularly when I look around the South Asian community in this country, where disability is still viewed as a stigma. There are families out there who will overlook the missed developmental milestones, ignore the advice from concerned health professionals, and insist that their child be educated in a mainstream school, despite the fact that they are obviously struggling in a busy classroom environment and would benefit from some additional support. As a community, we need to stop seeing disabilities as less than. Getting a diagnosis for your child will not make him or her any less able. In fact, a diagnosis will probably open up opportunities for your child to be supported and for them to reach their full potential. If we as parents are not prepared to put the needs of our child first and advocate for them, then it is highly unlikely that we will see the change in attitudes towards disabilities, which is so desperately needed in our society.