For Severely Autistic Children – "Nothing is going to change if people don’t know what’s going on"

“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”.

http://www.nytimes.com/2007/01/21/nyregion/nyregionspecial2/21lifilm.html?ref=movies

Autism Every Day – The Realities of Raising Severely Autistic Children

The film Autism Every Day will soon show – January 22 and 27 – at the Sundance Film Festival. Like many efforts to treat or educate autistic children or to speak about the realities of some autistic persons this film has generated criticism amongst some autistic persons, caregivers and professionals who do not believe that Autism is a disorder. From that perspective autism is simply a variation of human existence neither inherently better or worse than any other variation.

Personally, as the parent of a severely autistic 11 year old boy who I love with all my being, I appreciate the courage of the parents in the film who have told the stories of their children, and their families, for the world to hear. The world should understand that, while there are many very intelligent, articulate and talented persons with autism, there are also many autistic persons with severe intellectual, communication, sensory and behavioral challenges. These challenges pose serious risks to the health, safety and lives of the autistic children themselves and to family members. The reality is raisng and genuinely caring for severely autistic children takes an enormous toll on families, even with the great joy which the same children can bring to our lives.

I have not seen the entire 44 minute version of Autism Every Day. I have viewed the shorter version, which is on line at the Autism Speaks web site, and can be found at this link:

http://www.autismspeaks.org/sponsoredevents/autism_every_day.php

I thank the makers of Autism Every Day the parents who appear in the film, their autistic children and other family members for describing their realities, their challenges.