Monday, January 22, 2007

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".


Ian Parker said...

Hi Harold,

I don't consider myself one of "those who wish to pretend that autism, even for those with severe cases of autism, is beautiful." Having said that, I have issues with the film, as I wrote here if you're interested.

As I wrote there:

"I feel sympathy for the families involved, but I also have some major issues. To me this was a ‘train wreck’ video, and while autism is obviously difficult, I don’t feel that families touched by autism are well served by disaster movies. A more honest video would have showed the difficulties, but also the good times, and that it is possible to cope, learn, and improve the quality of life of our children, and for that matter for ourselves as parents, siblings, etc. The video asked for understanding, but it appeared to me to be understanding for the parents in having to deal with their children, rather than understanding for both children and parents.

"I quite like the idea of a video to explain our lives to others. But I'd prefer that it didn't make my child (by association) look like a ‘nightmare’ inflicted on us (and potentially on others when they come in contact with her). As a parent, autism is hard and painful at times to deal with, but there is also a joy that we can feel from our children, and one that our children can feel, even if we cannot always see it - and I think that much of the time I can see it, written on my daughter’s face. I don't want people to shy away from the Bear [my daughter's nom-de-net], to be afraid of the disruption that they fear she may cause, or to pity her, but rather, I want them to understand her and accept her."

'Accept' doesn't mean do nothing. My daughter's diagnosis is 'autism, at the severe end of the spectrum'. We're probably more 'interventionist' than you in terms of working to ameliorate my daughter's issues. But we do so to improve her quality of life. And part of that quality is and will continue to be derived from how well she is accepted for what she is and what she can become. If people see her as a nightmare to be avoided - which she definitely is not - then how does this help her?

I probably agree with many of the same goals that you do, including increased funding for IBI (which we currently pay for out of our own pockets). But I do not want others to incorrectly (I'll go as far as to say falsely) depict my daughter as a nightmare to achieve them.

Unknown said...

Thank you for your comments Ian. There is much in what you say with which I agree.

I think every parent though has the right to portray the reality of life with their autistic child as they, and family members, experience it. And I think that is what the parents in the Autism Every Day film have done. When I saw the short version I saw caring parents fighting for their children by telling the world the truth about their children and the realities of their severe autism.

Like you I have a son who is severely autistic. His name is Conor and he brings me great joy. I have posted numerous pictures of my son and talked about the joy he brings me on this site. I have also fought hard for improvements here in New Brunswick Canada in pre-school treatment, education and residential care of autistic persons. But no change will come anywhere unless people know the realities, the challenges of severe autism.