“Nothing is going to change if people don’t know what’s going on,”
- Michele Iallonardi of Hauppauge, a mother of three boys with autism
The above quote from the New York Times review of the Autism Speaks film "Autism Every Day" which will be featured, starting today, at the Sundance Film Festival, explains exactly why it was necessary for the parents of severely autistic children who appear in the film to describe some of the unpleasant realities of their childrens' severe autism and life for family members who care and love those children. As a father of a severely autistic 11 year old boy who, like his non-autistic brother, brings me joy and lifts my spirits every day for the past decade and more, I applaud their efforts. And will do so again.
As expected the film has drawn criticism from those who wish to pretend that autism, even for those with severe cases of autism, is beautiful. There are those who want everyone to think that autism is NOT a disability or a disorder, that it is just another variation in the human condition with no negative aspects to it. The more extreme amongst the Autism is Beautiful crowd have attacked anyone who advocates for health and educational interventions to improve the lives of their own children. To the extremists attempts to cure or educate autistic children, to give them the skills to function alongside other members of society is akin to a form of abuse; an attempt to steal from autistic children their true nature.
"For Sundance, the piece was expanded to 44 minutes, still focusing on more impaired children. They are the ones, as Ms. Singer characterizes them, “who don’t make enough progress to be mainstreamed, who continue to struggle, who still have such challenging behaviors.” “That’s why we made this film, to tell their stories,” she said.
It is a story that must be told and retold. There are indeed Autistic persons of high intelligence, some of whom write fine essays of their appearances before courts and parliamentary tribunals. But they have little in common with severely autistic children. It is the parents of such children who must tell THEIR stories openly and honestly so that people will know. It is the parents of severely autistic children who love and care for them, 24 hours a day, seven days a week, and know the true stories of their childrens lives who must speak up. We must tell their stories. Otherwise, as Ms. Iallonardi has said "nothing is going to change".