What frustrates me most about the disability letter is the fact that they say in essence say “Don’t spend money on research.” Would you tell the American Cancer Society to spend all their money on current treatments and no money on research. Behavioral interventions and education will only go so far. Until the underlying mechanisms or disease are discovered, we cannot discover therapeutic options that can make a positive impact on quality of life.

My biggest fear for Tristan was for him to be stuck in a label and the first part of the video definitely puts a label and stigma to autism. I don’t want anyone to look at my son through those eyes. I want them to see the wonderful kid he is first and foremost and to understand the differences in him and why he does things that might not make sense to us at first (like lining up his trucks everywhere).

Nicole above is very right when she said that the shame a parent may feel isn’t for the child’s behaviour but for others reactions and lack of empathy towards their child. There really should be a PSA explaining the meaning behind some of the behaviours, like sensory issues and problems transitioning. But as I discussed with my husband people are more likely to donate money if they see the severe side of things and the need. But it didn’t need to be done in this way at the expense of our kids.

But you’re right that this statistic is difficult to find although it is quoted everywhere. Conversely, what I did find was the Easter Seals’ Living With Autism Study conducted in 2008. It was a US survey of over 2500 parents of children with autism. What they found about the divorce rate was actually lower in families with ASD. I was somewhat surprised to read this and I can only assume given such discrepancies in numbers that a more in depth statistical analysis and survey be taken.

I agree that the reason quality of life for both people and families affected by autism can be poor is lack of education and assistance and empathy. And you’re right the focus should be on educating the public on autism and acceptance and understanding. A video that struck this tone would probably have been better accepted by the autism community.

Do you have an original source of this claim? I don’t believe it exists.

I understand that autism is on a spectrum, and at the profoundly disabled end of the spectrum quality of life can be very poor for the autistic person, and families can endure great hardships in order to find their children an education and assistance. But I also understand that for the vast majority of people on the autism spectrum that if society accommodates them, provides services and education, and most importantly offers compassion and empathy, they can have fantastic lives. The shame parents feel when a child melts down in Temple isn’t about autism to me, it’s about how people react to the autism.

I wish Autism Speaks would focus more on acceptance and understanding, less on fear based fundraising. Especially for the sake of C, a 4 year old who doesn’t know his diagnosis yet, and who deserves to have society embrace his differences and assist him when he struggles.

And as Kelly mentioned I think no matter how the video was done someone was going to feel upset, autism unfortunately has always been shrouded in controversy.

I think its the comfort of not being alone in this whole world of autism that I connected with in the video. Sometimes you feel so helpless and isolated as a parent and I thought the second part of the video did a lot to dispel that feeling.