AUTISM CHILD BEHAVIOR

Here in New Brunswick, Canada,  we have made little progress in providing decent residential care and treatment for severely autistic adults.  The recent case of the Nova Scotia autistic man locked in his room for 15 days and left to urinate in a corner reminds us all of how desperate life can be for autistic adults particularly those who are too severely affected by their autism disorders to be able to tell their stories when abused by those who are supposed to provide them with care. 

Few stories have been as revolting  and disheartening though as that of the two staffers at the Plus Group Home facility in Long Island arrested in 2007 for repeatedly beating a 50 year old autistic woman with a coat hanger and a shoe. Another employee witnessed the assaults and torture and informed police.  A recovered video camera recorded the assaults  as reported by the New York Daily News:

In order for the New Autism Spectrum Disorder to be diagnosed pursuant to the DSM-5, Criteria A, B, C, and D must all be met.  That is what the DSM-5 says according to the dsm5.org web site.  But will Criteria D, Symptoms together limit and impair everyday functioning actually be present in practice?  Or will psychiatrists and psychologists diagnose Level 1 Autism Spectrum Disorder without any real limit or impairment in everyday functioning?

I had previously asked if any of the well known, apparently very high functioning persons with autism or Asperger's Disorder would lose their diagnoses under the new criteria.  The other side of the coin, of course, is the possibility that Criteria D will not be required in practice.  

I have met persons with Aspergers who clearly have limitations in everyday functioning and I am not suggesting that anyone with Aspergers could not really meet a limited and impaired everyday functioning test.  There are, however, some very successful persons with a high functioning autism or Aspergers disorder who do not have any obvious limit or impairment including some who can function in high level government, legal and media settings. Presumably everyday functioning is an everyday, common sense, criterion. But how some of these people were diagnosed with an ASD even under the current DSM-IV criteria is beyond my understanding as a layperson. Given the careers that some have built as spokespersons for the autism community, will public pressure  be exerted for professionals to go easy on Criteria D in diagnosing the New Autism Spectrum Disorder?

Will Critieria D actually be required in practice in diagnosing the New Autism Spectrum Disorder under the DSM-5?  I guess the answer will be found in future prevalence studies and debates. 

In all honesty I wouldn't have paid too much attention to an announcement about a new mobile application, connected to autism or not if it weren't for the involvement of Spurwink an evidence based treatment and care facility for persons with autism and other disorders.  Spurwink has featured prominently here in New Brunswick, Canada as the facility to which some autistic New Brunswickers have been sent for treatment because we lack a facility that can provide high quality evidence based residential care and treatment for the most severely challenged autistic youth and adults. 

I have no opinion or knowledge to share on iPhone apps generally, or on this one specifically, other than to say that Spurwink's participation in development of the application will certainly attract attention and possibly add credibility to the application. 

As the parent of a soon to be 15 year old boy with severe Autistic Disorder I have never attributed his autism disorder to vaccines. I have always accepted the view of public health authorities that there is little or no evidence linking autism to vaccines. With that mindset I never endorsed Jenny McCarthy's views of autism and vaccines although I admired her courage in fighting for her son.

At the other end of the vaccine autism battlefield I support vaccine programs generally as vitally important public health tools but I have become increasingly concerned by the campaign to discredit those who question vaccine safety and the certainty with which Vaccine Generals like Dr. Paul Offit and Dr. David H. Gorski aka Orac have declared that all vaccines and vaccine ingredients can never cause any autism disorder in any child.  Given the lack of certainty about what autism is biologically, given the shifting autism definitions used to attack what appears to be an obvious and astounding increase in autism disorders,  I don't see how the epidemiological studies can be that definitive. A particular question for me is whether the studies have actually ruled out the possibility that vaccines given to pregnant women might cause or trigger autism in the children they are carrying. Another major question arises from the failure to conduct studies comparing autism rates in existing vaccinated and unvaccinated populations. 

Dr. Offit is the gentle, sweater wearing uncle type who poses for an adoring media and declares parents to be timid fearful sorts who can not understand science and the big picture.  Dr. David H. Gorski, aka Orac, is the snarling pitbull who delivers incessant attacks on vaccine questioners AND actual anti-vaxxers with scientific terminology like WOO, QUACK, IDIOT  and so on.  Both may soon be called on to lead their minions into battle again with news of a study out of Finland, as reported by AFP, which found that children injected with the Pandemrix swine flu vaccine were nine times more likely to contract narcolepsy than those who were not vaccinated  :

AOL, in March 2010, posted an autism interview under the misleading title Autism Experts on Causes, Cures and Controversies. While the title referred to multiple autism experts the interview actually included one autism expert Dr. Geri Dawson of Autism Speaks.  It also included Dr. Paul Offit.

The Offit Offensive has been underway for a couple of years with heavy mainstream media, eg. the New York Times,  coverage of his books and with opportunities galore for interviews and serious discussion of vaccine issues eg. the Colbert Report. The icon of the "do not ask questions about vaccine safety " army which currently prevents media coverage of autism issues UNLESS they relate to vaccines was exposed in an AOL interview  (Geri Dawson of Autism Speaks was also interviewed) as someone with relatively  limited knowledge of autism who was prepared to grasp at anything that exonerated vaccines as a potential cause of some cases of autism.  To that end Dr. Offit warmly embraced the Neurodiversity ideology |(which does not view autism as a disorder,) sympathizes with very high functioning autism advocates and shows no awareness of the effects on everyday functioning of those with severe Autistic Disorder.

Some examples of Dr. Offit's autism awareness from the AOL interview Autism Experts on Causes, Cures and Controversies:

"AOL Health: Reports say that one in 110 American children is affected and that we are in the midst of an autism epidemic. Is this really an epidemic? Why now?


Offit: It's not an actual epidemic. In the mid-1990s, the definition of autism was broadened to what is now called autism spectrum disorder. Much milder parts of the spectrum -- problems with speech, social interaction -- were brought into the spectrum. We also have more awareness, so we see it more often. And there is a financial impetus to include children in the wider definition so that their treatment will be covered by insurance. People say if you took the current criteria and went back 50 years, you'd see about as many children with autism then.


Dawson: We know that the broadening of the diagnosis, as well as more awareness and access to services, accounts for some of this increase, but these variables don't account for all of the increase. Over the last two decades, the prevalence of autism has increased by over 600 percent. Between 2004 and 2006 we saw a 57 percent increase. A large percentage is unexplained, and that's why there is a focus on identifying environmental factors.

Alleged Autism Expert Offit relies on unidentified  people who say there were about as many children with autism 50 years ago?  Apparently autism expert Dr. Offit doesn't read information by people at the CDC and IACC who say based on research that approximately 50% of the increase in autism diagnoses is unexplained by diagnostic definition change, increased awareness or access to autism services.

From the CDC web site which states that autism is actually increasing:

"Does thimerosal cause autism?

Obviously the CDC would not have cited increased autism rates as support for the view that thimerosal does not cause autism if the increase were not real. AOL asked about causes of autism:


AOL Health: What causes autism?

Offit: It has, at least, a genetic basis. A number of studies have shown a complicated genetic mutation. It's not like sickle-cell anemia, where a single gene has a single mutation, or cystic fibrosis, where a single gene has many mutations. With autism spectrum disorder, it appears that at least several genes have varying mutations.

Dawson: Genetics play a significant role. If we compare identical twins who have all the same genes versus fraternal twins who only share half their genes, the concordance rate is about 90 percent in identical twins and only 5 percent in the fraternal twins. But there's evidence that suggests that environmental factors can also play a role. Most likely individuals with autism have a genetic susceptibility that interacts with environmental factors. Research is focused on factors such as the prenatal environment, prematurity and exposure to toxins such as pesticides

Alleged autism expert Dr. Paul Offit makes no mention of possible environmental causes or triggers of autism disorders preferring to mention only genetic bases for autism.  Dr. Geri Dawson's reference to evidence of environmental factor involvement in causing autism is in fact consistent with modern scientific consensus as expressed by the the Interagency Autism Coordinating Committee:

"As with many complex disorders, [autism] causation is generally thought to involve some forms of genetic risk interacting with some forms of non-genetic environmental exposure. ... In addition, a number of other environmental factors are being explored through research because they are known or suspected to influence early development of the brain and nervous system. Recent studies suggest factors such as parental age, exposure to infections, toxins, and other biological agents may confer environmental risk. ... Progress in identifying environmental factors which increase autism risk has been made recently (Eskenazi et al., 2007; Palmer et al., 2006; Palmer, Blanchard,; Wood, 2009; Rauh et al., 2006; Roberts et al., 2007; Windham et al., 2006), although this area of research has received less scientific attention and far fewer research dollars than genetic risk factors"[Underlining added - HLD]      - United States IACC (Interagency Autism Coordinating Committee)

Once again, alleged autism expert Offit seems to be out of touch with mainstream scientific consensus on the role of non genetic factors in causing or triggering autism disorders.  Of course the use of the term disorder may be touchy for autism expert Offit who accepts the Neurodiversity views that autism is not a medical disorder and that autistic children will, if left without treatment, will improve over time:

NOTE: Alleged autism expert Offit focuses on attacking biomedical treatments but makes no mention of behavioral intervention as possible explanation for autistic children's improvement.  Instead he embraces the Neurodiversity ideology which says let them be, just let them be ... there will be an answer ... they will get better on their own, let them be, let them be.

"AOL Health: What do you think of the theory promoted by many autistic rights organizations run by individuals with autism that society needs to accept neurodiversity and treat autistic individuals as people who think and understand the world differently?

Offit: It makes abundant sense. They are arguing that it's a way of being. It's a variance of normal. It should be looked at as such, not stigmatized. I've spoken to many of them, and they don't want to be seen as damaged.

Dawson: One of the things that is so challenging about autism is the fact that there's so much variation in the way autism is expressed in people. Some individuals can have a productive and creative life, and they aren't looking for a cure. They're interested in being accepted and getting access to services to help them adapt to the world with their special skills. At the other end, there are children severely affected who have significant medical conditions, such as seizures, and have never spoken. For those individuals, the prospect of a cure for autism is really important. That results in a lot of different perspectives of where our priorities should be."

Alleged Autism expert Offit makes no mention of the children severely affected by autism disorder for whom the prospect of a cure is really important as noted by Dr. Dawson.  Of course Dr. Offit would not actually be able to speak to many of those who are non verbal with intellectual disabilities.  And he would not actually talk to their parents either since he would be too busy talking down to them about how vaccines have never caused or triggered the autism disorders about which he knows ... so much.