Sunday, September 05, 2010

Autism Every Day: Take 7 minutes and watch this video! Update- read the comments about the controversy this video generated...



UPDATED COMMENT:

The "Autism Every Day" video came to my attention from a parent of a young adult with severe autism who also works as an advocate. The video was also shared by a director of an advocacy/support agency who previously worked with students with severe autism and cognitive delays as a special educator.

After I posted this video, I received a comment from Liz Ditz about the controversy that this video generated within the autism community. Part of the problem is that the video did not depict any positive scenes. For example, if the purpose of the video's creators was to generate awareness of the needs of families raising children with autism, it might have been useful to devote some time showing families who experienced positive outcomes and specific examples of the supports have been put into place.

My deep concern is that in my state (and others),  funding was significantly cut for community support services for young people with severe autism, as well as for young people with severe psychiatric disorders, as well as their families. Special education funds were cut, and we have been prepared to expect a "funding cliff" at the end of the 2010-11 school year.  Related services providers in the schools, such as speech/language therapists and occupational therapists have larger caseloads than in the past, and in some cases, are not replaced if they move.

Below are my original comments, written in an attempt to bring awareness that our schools, community support agencies, and health care systems need to provide more supports for the growing number of children, teens, and young adults with autism spectrum disorders and their families.

ORIGINAL COMMENT
The children with autism in this video are young, and in no time will reach their teen and young adult years. I work with teens and young adults with severe autism in my job as a school psychologist. We need to prepare our middle and high schools for the increased numbers of young people coming through the doors.

If you know of a similar video that targets the needs of teens and young adults with autism, please let me know, and I will share it on this blog and my on-line social networks. I would be willing to help produce a similar video locally, with the cooperation of parents, if one has not yet been produced.

Note: This video will include positive vignettes!

4 comments:

Liz Ditz said...

Dear Lynn V. Marentette,

The video "Autism Every Day" was made in 2006 as a awareness and fundraising video for the autism charity, "Autism Speaks".

You may not be aware of the criticism that the video gained from others in the autism community, both parents of children with autism and adults with autism. The gist of the criticism is that the video was deliberately made to raise parents' fears about autism and to demonize those with autism.

One of the most nuanced was written by Mike Stanton, in which he gives examples of how the video is dishonest, manipulative, insensitive, and selfish.

As Amanda Baggs wrote, This was, as expected, not really a “slice of everyday life” from these parents’ lives, but a deliberately engineered take on the worst they could make things look. Why aren’t more people complaining?

Another adult with autism wrote:

one problem I see with the mainstream autism organizations like Autism Speaks (hate that name) is that they encourage parents to get stuck in grief rather than moving on. They portray it as unending misery, and a battle, and all sorts of viewpoints that form a barrier to dealing with grief, and in fact may induce grief in parents who otherwise wouldn't grieve.

Kevin Leitch, the parent of a child with autism, roundly criticizes the director, Lauren Thierry: "This is not accuracy. This is a calculated agenda. Of course kids not sleeping through the night or banging their heads against walls, or running into traffic are realities. No one disputes that. But Autism Every Day (and Thierry) in the above quote are explicitly excluding images of kids setting basketball records or playing the violin. Those are also realities. I showed another reality at the end of my original post – that of my beautiful daughter grinning from ear to ear as she bounced on her trampoline.

You are not ‘showing the world what the reality truly is’ Mr/Ms Thierry. You are, by your own admission, deliberately excluding anything not capable of inducing pity."

Kristina Chew, the mother of a now-teen with severe autism, pointed out that one mother in the Autism Speaks film talked about killer her children, and four days later, a mother in fact did kill her four-year-old daughter.

Allison Tepper Singer was the mother in the film who spoke about thoughts of killing her daughter. She was then associated with Autism Speaks, and since has moved to the Autism Science Foundation. In Speaking Out About "Autism Every Day", written in 2009, Ms. Singer explains why she allowed herself to be filmed expressing those sentiments, and how her thoughts have evolved.

As far as more accurate and balanced videos showing both the needs and accomplishments of children, teens and adults with autism:

You might want to look at Autism Reality, by Alex Plank, and some of the other videos from the YouTube channel The Wrong Planet

You might also want to look at the giant array of resources at The Autism Hangout. There is a big library of videos.

Liz Ditz said...

For a professional overview, Yale University has made their undergraduate Autism seminar available on YouTube

Lynn V. Marentette said...

Liz,

Thanks for sharing the background info on this video. I wasn't aware of the depth of the controversy.

I learned of this video from two people I know. One is a former special educator with experience working with students with severe autism, a former colleague. She is a director of a local advocacy agency. The other is parent of a young adult who has severe autism. This parent works as an advocate. She felt that the video was true to the reality that many parents experience.

What I now understand to be "staged vignettes" were consistent with what I've observed over the years in the schools and also during home visits - I've observed lots of positives as well, especially when appropriate supports are in place for young people and their families - at home, school, the health care system, and in the community.

I use positive video self-modeling as one of my intervention strategies at work, so I have quite a collection of video clips that show that wonderful things CAN happen. (I also have two close relatives who are "on the spectrum", so I am aware that the paths to positive outcomes can be winding and bumpy at times.)

The concern that I have is that in my region, state and community agency funds were severely cut for young people (and their families) with autism with the most complex needs. This also was the case for young people with serious emotional disabilities/psychiatric disorders, even those who have a history of violent behaviors.

Our state's budget for special education and related services has also been cut, and we are preparing for a "funding cliff" at the end of the 2010-11 school year. These services took parents, advocates, teachers, and service providers years to put in place. Related service providers such as speech and language and occupational therapists are stretched thin.

I am sure that this is the case in other states.

Lynn

Liz Ditz said...

Dear Lynn,

I live in California and yes, we too are facing a "funding cliff".

It's a frustrating situation all around. Schools don't have adequate funding, so cut back programs like specialed, leading to poorer outcomes for students, and thus increased social-services spending down the road. (And yes, for now I am ignoring completely the social-justice aspect of adequate supports for individuals with disabilities and their families.)

Now on to another issue: is autism a calamity or is autism a challenge? The best essay I've read to date on that was written by my friend and colleague*, Shannon Rosa:

Autism, Parenting, and the Importance of Attitude. Shannon's son Leo has significant challenges, with limited expressive language skills.

From a teacher's point of view, Kate Ahern's Living the Least Dangerous Assumption (first published on her blog, Teaching Learners with Multiple Special Needs and republished at TPGA.

Some other resources I can recommend for parents and teachers: Autism Hangout, with resources for parents, teachers, and adults with autism.

Autcom -- "dedicated to "Social Justice for All Citizens with Autism" through a shared vision and a commitment to positive approaches."

Vocational Rehabilitation Service Models for Individuals with Autism Spectrum Disorders "focusing on issues and strategies for improving employment outcomes for individuals with autism spectrum disorders."

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*disclosure: I am an editor on the Thinking Person's Guide to Autism