Sunday, August 30, 2009

Severe Autism Videos from CDFoakley: Do Not Watch If You Can't Handle Reality

The following videos show some of the hard realities, some of the challenges facing those who are most severely affected by autism and the family members who love and care for them.

The autism reality of the young man in the first video is not the autism reality of someone who will excel in a difficult and complex post office work environment or go on to work as a researcher alongside a team of high functioning autism experts. This young man is unlikely to appear before a high appellate court, august political committees, or on national and international television as a self appointed spokesman for all "autistics". and opposing evidence based interventions for other people's autistic children.

This young man's voice will not be heard by public decision makers deciding whether research, therapies and treatments should be funded to help address the autism realities shown in this video. This young man is unlikely to attend at any college, let alone an esteemed college for gifted youths or appear in scripted, orchestrated videos promoting a nonsensical theory of stimming as language. This young man's autism realities are unlikely to be gushed over enthusiastically by bloggers celebrating the joy of autism or promoting autism as anything except what it is ... a neurological disorder with profound negative consequences for so many affected by its reach.

This first video, cal fire family and less glamorous side of autism, is posted on YouTube by CDFoakley with the following comment:

Rare educational footage of autistic person with a complex mix of seizure disorder and self injurious behaviors. Point: to show how to help children suffering from such a brutal and complex behavioral disorder. Not for people who can't handle REALITY. Or who don't understand this situation.

The second video Brother and sister help protect autistic brother from head punches shows the realities of self injurious behavior and some of the impact on families trying to help their autistic family members. The video is also posted on YouTube by CDFoakely; this time with the following comment:

Siblings helping protect autistic brother during self injurious meltdown. Disturbing side of autism you won't see in public broadcasts or charity events about autism. Nor will you hear people who think autism is "wonderful" or a "gift" talk about this level of autism....

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Anonymous said...

What really gets me are parents like this one whose son is barely on the spectrum (if at all) and all she can do is complain about how bad they have had it. Give me a break. This Mom (literally the name of her blog) also praises individuals such as John Elder Robinson and others and truly thinks autism is simply a beautiful variation that can be worked through. Give me a damn break. I am so very tired of these types speaking for children with severe autism who, as you convey, will never really have a voice of their own.

farmwifetwo said...

Still waiting for the day that autism becomes autism once more on the DSM and Asperger's, NLD and the other HFA's dx'd as adults to join the "club" have their own separate dx's.

They are not "autistic" although they keep claiming they are. If they were, than like my youngest (re-dx'd 3 wks ago from severe PDD)and yours they would be dx'd with Autistic Disorder.

Granted I'm not above using the "autism-ish"-ness of the HFA/NLD dx of my eldest to get services... never claimed sainthood :).. but I'd part with them if it would help his younger bro and stop those like my eldest who claim to talk for the youngest.

Stephanie Lynn Keil said...

I would gladly sacrifice my "autistic talents" so that the profoundly autistic (and I have one in my family) could have the opportunity to lead normal lives.

I just find it rather selfish to not want to cure autism so the higher functioning ones can revel in their "specialness" while the profoundly autistic, such as this and my cousin, have to live such a harsh reality.

Roger Kulp said...

OK,I am able to talk,but the second video,is a lot like what I experience in one of my "moderately severe" episodes,they do get worse.I also make a lot of loud noses.and use an item,like big heavy book to hit my head with.Not having anyone to stop me,this can go on for most of a day.The more severe episodes take over a day to wear off.Yes you can wake up a second day and continue to self-injure/head bang.I have about one really bad episode every 4-6 weeks,and "milder" behavior in between.

In case anybody has any doubts,this sort of behavior is not related to degree of intelligence of the autistic person,but the severity of the autism itself.

I used to chew on my lip and tongue a lot.It is a lot less frequent than it used to be.I only learned the other day,that this was a form of self injury.

The young man in the second video seems to have a "milder" autism than the one in the first video.

See the comment I posted last light,when I saw this posted at "The Autism Retort".

Anonymous said...

I notice Autism Speaks never advertises the severely autistic, such as these kids, when they are promoting their ridiculous walks looking for more and more money for their overpaid staff. How come all I have ever seen are the smiling children of the annoying Autism Stepford Parents recruited by Autism Speaks?

A Family said...

Thanks for posting these videos. These families are doing a wonderful job with their children, and people haven't a clue.

Thanks for being a voice.

My son would have much more severe autism if he wasn't caught so young and given intensive ABA and biomed so young, but even then, he wouldn't be the voice for severe autism. And I hope I am not painting a rosier picture of autism than I should.

Autism is not beautiful. It's harder than hard.

payman2dib said...

I wish I had some sort of gift to cure these kids.

I want to let these siblings know that they are not alone. Since I do not know you or see you does not mean that I do not think about you every hour. My heart goes to you.

Nancy said...

I thank you for posting these videos if only for a wake up call to those that have never even seen such adversity in the ASD world.

These children most likely do not attend public schools and are seldom seen by the general public so they need a forum in whatever format possible, even YouTube.

I will not diminish the suffering of anyone because I do not walk in their shoes but I will not deny the existance of those that suffer far greater trouble than I have ever seen.

navywifeandmom said...

How the hell the ND crowd can see such horror (and there is no other word to describe it) and say that autism should not be cured is beyond me. I saw the first one on another blog that I read routinely and it made me so sad. It also made me count my blessings that my daughter does not self-injure and is potty-trained, even if she cannot speak yet. There is always someone out there who has it worse than you and your own kid do, that's for sure.

K said...

It is quite remarkable that my son shares the same diagnosis as this child who needs immediate help and yes, a cure.

ND should not ignore a child like this nor what his family lives through on a daily basis.

Let's not also say that all autistic disorder is like this, it isn't. It isn't like this in my son. Though he occassionally has self injurious behavior, it serves a different purpose than this child's.

I also find it amazing that the parents can say anything positive in the video, which they do in the annotations. The love is clearly there and I hope to god they find some relief and a cure for their son.