The women and girls of autism
During the week we celebrated World Autism Day and this year’s celebration was focused on “Women and Girls”. It is an interesting theme, and one that seeks to focus the attention of the world and all those concerned with autism on the special circumstances of women and girls on the autism spectrum and the role of women and girls in supporting other individuals on the autism spectrum. As a parent of a female child on the autism spectrum and having worked closely with my wife over the last twelve years in raising our daughter and in the last six years in supporting other children and families, I am no doubt a credible witness to the important role that women play in supporting autism, and also the deep impact that autism has on our women and young girls and will like to share some experiences and perspectives on same.
Firstly, due to the typical confusion that ensues when a two or three-year old child seems “different” from others and a diagnosis of autism is made, many families with a child on the spectrum are unable to cope with the disturbing and life-transforming news. There are countless episodes of marriages being broken on account of an autism diagnosis, especially as the couple trade blames on “who” and “what” must have caused this to happen. In most of these cases of family break-ups, the father (man) leaves the autistic child alongside other children with the mother, leaving a woman with the huge burden of raising the child. In some cases, too, we even find that when the marriages do survive, some men react by continuously blaming and saddling their wives with all the responsibilities regarding raising their child, distancing themselves away from the challenge. There is clearly a preponderance of women fighting the battle of autism alone in our society especially against the backdrop of some of our archaic social and cultural dispositions. Even for those of us daddies who are trying to be involved and committed as we should be, we cannot but recognize the very important role that our wives play in taking care of our children. This of course does not mean that there are no families where the men shoulder these responsibilities alone, or where indeed the mother is guilty of walking away or abandonment. Surely there are, but most of the time, the heavier burden and impact is on the Women (mothers).
For a girl child on the autism spectrum and their families, being a girl can be especially difficult. Firstly, there are much fewer boys than there are girls on the autism spectrum, so that difference clearly stands out. As the young girls become teenagers, parents and care givers must be concerned in an even more important way on the challenges of adolescence – puberty with all its physiological changes, interactions with members of the opposite gender and all its associated fears, and more importantly because most people on the autism spectrum are non-verbal and have limited communication and social skills. Parents and care-givers have to be more vigilant in caring for and protecting the girls on the autism spectrum especially with all of the social ills that are prevalent in our society.
As the young girls grow up and start to work and live independently, the realities of autism will no doubt continue to have an impact on them. We are still struggling as a society to rise up to the challenges of truly integrating women into work and professional life, and in this case, we need to be even more concerned and deliberate considering the developmental challenges that women on the autism spectrum have.
While the theme for this year’s celebrations focus on Women and Girls, there is no doubt that autism spectrum disorders have far-reaching consequences for all – including the men and boys. One focal point for us and the work we do has always been about developing and providing resources that will help families and those around the autistic individual to better cope with these challenges. Such resources are designed to ensure that people around are educated and informed so that they can provide appropriate support to the individuals and their families. It is quite gladdening to be outside with your child and rather than receive long stares, get real support from people around who can immediately identify with your child’s challenge and engage with you and your child appropriately. I often encourage family and friends to learn not just about autism, but more importantly about how best to engage with, interact and support individuals on the autism spectrum. With the increasing prevalence of Autism Spectrum Disorders, we need to know doubt do more in raising awareness and building capacity to support the children, individuals and families coping with Autism, so that #TheyToo will live a fulfilled life.
Barrow is the producer of “Chubu and Chibi’s Autism Adventures” Drama Series, and Director of Thoughtful House Autism Center, Abuja