[Blog] In the context of the World Autism Awareness Day: Cri de Coeur of a Mother

In 2007 the UN General Assembly declared April 2 as World Autism Awareness Day. Since that time the day has been marked by events and activities aimed at promoting an understanding of autism and making the world a more inclusive place for those living with this disability. The focus for this year is the alignment of autism awareness with the SDGs (Sustainability Development Goals) by highlighting stories of empowerment, challenges faced and victories achieved. The theme is: #Awareness #Acceptance #Appreciation- Moving from Surviving to Thriving

Though the concept of autism was invented by the German psychiatrist Eugene Bleuer in 1911, it is only in the late eighties that the general public became aware of it through the mythical film Rain Man. In this eye-popping movie that has become a Hollywood classic, Dustin Hoffman plays the role of an autistic person endowed with an exceptional ability to master arithmetic and recollect dates and events with stupendous ease. While there are a few autistic persons graced with special abilities and talents like the towering actor, Sir Anthony Hopkins or the mythical film director, Woody Allen or the world chess champion, Bobby Fischer or simply the iconic Swedish environment activist, Greta Thunderbird, the reality remains that the vast majority of them are people with serious developmental disabilities who are widely misunderstood and face an uphill struggle to integrate society. 

Autism has been defined by the American Psychiatric Association as difficulty relating to and communicate with other people, indulgence in repetitive behaviours and repetition of phrases and having trouble functioning in different spheres of life. Now it is the term Autism Syndrome Disorder (ASD) that is more commonly used as it encompasses a slew of conditions and varying degrees of severity. It is more common in boys than in girls and, according to a study, the ratio is 4 : 1 (Autismspeaks.org).

Parents are the first to face the daunting challenges of raising an autistic child and bear the brunt of coping with the multitudinous barriers that strew the lives of such children. Who can more poignantly express the trials and tribulations of a parent than a mother who has lived such difficult experiences? Below are a few excerpts from an article written by late Geraldine Aliphon, mother of an autistic child and founder of Autisme Maurice, the first organization in Mauritius to raise awareness of autism and offer specialized services to children with such conditions: "When the diagnosis was pronounced, I felt alone in the world. I kept asking myself...why me, why us, why my child? First, we had to explain to the family. Everybody tried to come up with their own interpretations. Some tried to look for antecedents in the family. Others tried to give false hope by suggesting that with time the child would improve, would talk and would be fine (though it is known that it cannot be cured as autism is not a disease but a disability with which one has to cope throughout life by learning techniques). Others started giving me so-called lessons on how to raise him, 'correct ' him while another supposedly well-meaning lady advised me pityingly to bring him to a witch doctor (longaniste) as the child has caught an evil eye and she cannot bear to see him like this.... The moral and physical exhaustion of having a hyperactive and autistic child is the cause of numerous conflicts at home and in the family. Some avoid us in order not to invite us to social gatherings and functions....we have faced a lot of negative remarks - like ' zenfan la pa normal sa ' - and disapproving looks from the public. Difficulties faced to find a school for my son were nerve-wracking and bring painful memories..."

"As a parent, my dream is to see my son being accepted as a full-fledged human being ('a part entiere'), despite his differences. This will alleviate the burden of parents like me who suffer from the negative attitudes of society and hurtful looks of the public in the street and other places. I have hope..." 

Azize Bankur 

(Excerpts reproduced with courtesy  and translated from French,  from an article in NCRD Newsletter 2012)