US President Obama's disability nominee Ari Ne'eman does not believe that autism should be cured. To Mr. Ne'eman, and his supporters, curing autism is morally reprehensible. Mr. Ne'eman, a very high functioning university student with Aspergers Disorder, has every right to refuse treatment or cure for his Aspergers which he does not consider to be a disability. But does he have the right to insist that other people's children should not be cured of autism disorders, that no research be conducted to develop treatment and cures?
Some children with autism suffer much more than teasing from fellow students, as Mr. Ne'eman apparently once did, as a result of their disorders. Some do not understand the dangers of daily life, or even understand language beyond a very simple level. Some engage in serious self injury and some ... like 3 year old Daniel will not eat because of their autism disorder. To all of these real people, real children, other people's children, with autism disorders, Obama nominee Ari Ne'eman says thou shalt not be cured for to do so is morally reprehensible. And with his nomination, and eventual appointment, to a high profile US disability council Mr. Ne'eman's commandment will inevitably grow in influence.
Daniel's story, and it is not unique, is told at nottingham.co.uk:
The three-year-old from Carlton was diagnosed with autism two years ago after his parents noticed he was not developing as normal.
One of the side effects of his condition is a severe form of acid reflux, when acid from the stomach leaks up into the gullet.
It means Daniel went "up the wall" whenever he ate anything because of he associated eating with the pain of being sick.
He can now only take in food through a tube inserted into his stomach – and his parents say he may never eat normally again."
Movies, major media organizations and now the President of the United States, like to represent people with autism as high functioning success stories like university student Ari Ne'eman. President Obama apparently agrees with Mr. Ne'eman's opposition to curing autism disorders, with his view that autism is not a real disability, or he would not have nominated him to an influential disability council.
The US President is embracing a young man who does not believe that Daniel and others who suffer from the serious, life restricting, and often times dangerous, effects of autism disorders should be cured. President Obama is joining Ari Ne'eman in saying to Daniel, his parents and others affected by the severe consequences of autism disorders ... thou shalt not be cured.
Harold Doherty,
ReplyDelete"The three-year-old from Carlton was diagnosed with autism two years ago after his parents noticed he was not developing as normal."
The above sentence is not specific regarding diagnosis. "Autism" is NOT a diagnosis; "autism" is a SPECTRUM DISORDER.
I was also diagnosed with "autism" when I was in elementary school. Both Daniel and I have "autism," but we are VERY different due to age. The article does not specify what type of "autism" he has - Asperger's, PDD-NOS, Autistic Disorder and to what degree - high or low functioning and mild, moderate, or severe.
"One of the side effects of his condition is a severe form of acid reflux, when acid from the stomach leaks up into the gullet."
As many people know, I support treatments (not all) and someday possibly a cure for autism disorders. Recently, I have been commenting on Oliver M. Canby's blog. He is an autistic adult who wants to be cured of his autism disorder.
I don't glorify autism disorders. Autism is BRAIN DISORDER; however, Acid Reflux is gastrointestinal DISEASE. I know autism ITSELF causes many DEFICITS with communication (verbal and non-verbal), abstract material and concepts, impaired judgment, understanding language (including figurative), social skills, and other CHALLENGES.
Autistic people can and DO have CO-MORBID conditions such as gastrointestinal diseases like Acid Reflux (and others mentioned on "Age of Autism"). NONE of these are autism. They can EFFECT and EXCABERATE autistic symptoms. I support alternative/biomedical (except chelation and HBOT) treatments and mainstream medical treatments for autistic DEFICITS.
Regards,
Katie K.
Katie K
ReplyDeleteActually the article does indicate symptoms associated with low functioning autism including lack of speech development, inability to communicate and Daniel's refusal to eat because he associates eating with the pain of being sick:
"Daniel went "up the wall" whenever he ate anything because of he associated eating with the pain of being sick."
Daniel is not the only autistic child who has self starvation issues. I have mentioned it on other posts. I first learned of this aspect of autism when advocating for reversal of a decision to close an autism tertiary care pediatric team here in Fredericton, New Brunswick. The team had dealt with such issues previously.
As for you or me questioning Daniel's description as having "autism" I would point out to you that the article references his involvement with the Great Ormond Street Children's Hospital in London. I assume the article would not have mentioned autism if he did not have one of the Pervasive Developmental Disorders commonly referred to today as Autism Spectrum Disorders. Given the severity of his symptoms and the speech delay it is a pretty good bet he has an actual Autistic Disorder diagnosis rather than Aspergers.
With respect to the eating issues I also point you to the words of the UK National Autistic Society rep:
"Caroline Hattersley of the National Autistic Society said: "Autism is a lifelong and disabling condition that affects people's ability to communicate and interact with the world around them.
"Some children with autism can have problems relating to feeding and difficulties surrounding their diet.
"Whilst not all children with autism have these types of difficulties, it can be deeply distressing for those who do, as well as their families."
HLD
I'm going to agree with differentlywired_10 that autism doesn't automatically mean all cases have gastrointestinal diseases, it is in fact a condition that CAN be common among these children and I stress CAN.
ReplyDeleteI am a father of a 8 year old non-verbal autistic boy, who has no problems whatsoever eating everything in sight. We love our DAN doctor, but even he agrees not all children are affected by yeast, bacteria, mercury/lead, etc, some are never sick, for example like my son. My son has apraxia to the mouth, and cannot bathe/dress/feed himself because of his motor skills. He is no way affected as this little boy Daniel but in the same sense he is still severe.
That goes for a lot of children. Autism is a developmental disorder that affects social and communication impairments, does not automatically include all all of the following such as said above.
Anonymous 9:07
ReplyDeleteI never said that autism affects every autistic child in the way Daniel was affected. My son is severely autistic also and he eats very well. The problem is that when some of them have an eating issue it becomes very much more dangerous and more difficult to solve because of some of the sensory and communication issues that can be present with autism. If you read the article carefully I believe it is saying the same thing.
As I stated to Katie K (differently wired 10) I have been involved in autism advocacy here for over a decade and was actively involved in keeping a tertiary care pediatric team for autism from being shut down by government. In the discussions involving that issue many of the problems the team had provided services for were discussed including the need to help some autistic children who because of sensory aversion to specific foods, and because of communication difficulties, refused to eat to the point of self starvation.
That is the issue described in the Daniel Harrison case. It is a very real issue complicated to a dangerous level by the autism disorder.
The issue here is whether serious challenges caused by autism, and they can be different from one autistic child to the next but still arise from their autism, should be dealt with by curing the autism.
Ari Ne'enman says that it is morally reprehensible to cure autism, and thus to cure problems such as self starvation, serious self injury etc which arise from autism disorders.
He has no right to tell parents whether they should seek treatment or cures for their own children.