North Bay Needs A National Autism Strategy

In Autistic kids waiting for help Local agency can’t operate at its maximum capacity..... and families are suffering Brandi Cramer reports on North Bay's autism desperation. Early intervention, particularly in the 2 to 5 period, is acknowledged by all save the most rabid anti-cure ideologues as a critically important window of opportunity in treating autism. In North Bay Ontario Shannon Berger's three year old son was diagnosed with severe autism in September and has been on a waiting list for intense behavioral intervention treatment since. The local agency is running a deficit and has been unable to take on new clients. The Province of Ontario has increased funding in the region by100% in the last five years but the agency is still over strapped and the Province says agencies have to manage their budgets.

The truth is that North Bay needs a National Autism Strategy that would see federal dollars flow to the provinces to provide autism treatment. Medicare for Autism is needed NOW to ensure that ALL autistic children receive timely effective treatment regardless of where in Canada their parents live. The autistic son of Alberta Conservative MP Mike Lake deserves access to autism treatment. So too does Ryan Berger, the autistic son of Shannon Berger of North Bay, Ontario.

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Missing Autistic Teen Found Safe In Minnesota

A 17 year old autistic girl who went missing in St. Paul Minnesota has been found safe in Eagan Thursday morning about 24 hours after she left her home early Wednesday. The police do not know where the young woman stayed over night. Kim Stagliano at Age of Autism blogged this story under the appropriately sarcastic title More Joy of Autism: Another Lost Child.

I too find it difficult, OK impossible, to refrain from sarcasm, and other negative forms of expression, when mentioning the "Joy of Autism" nonsense promoted by Estee Klar-Wolfond and other bloggers who argue that autism, a neurological disorder, should be celebrated. That a parent can celebrate the fact that their child has a neurological disorder that will impair and restrict his or her life is beyond my comprehension. I have written on this subject several times including in Joy of Conor, Why I Find No Joy In Autism - Biting and Other Self Injurious Behavior, and Autism Reality On The Road . Conor has gone missing in the past and when it happened it terrified me and each story of a missing autistic person hits me hard in the gut. He has injured himself with biting and on occasion his mother with hair pulling. These are not events to celebrate.

I find great joy in Conor, my buddy forever, but not in the autistic disorder which limits his life experiences so drastically. I will never surrender to the muddled thinking that would have me confuse joy in my son with joy in the autistic disorder which marks his life so seriously.

I am happy that the 17 year old in Minnesota was found safe.

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Autism and the Media - CNN's Shameful Non-Coverage of Severely Autistic People

CNN is continuing its shameful treatment of persons with severe Autism Disorder. If your only knowledge of autism was garnered from viewing CNN broadcasts or blogs you might think that autism is not a disorder, that every autistic person finds a way to communicate and that all autistic persons live happily ever after. You would not know that many persons with severe Autism Disorder, not Aspergers, not PDD-NOS, but Autism Disorder with profound developmental delays, require constant care and supervision. Some live their lives in residential and institutional care facilities. Some are assaulted in their residential facilities and lack the communication ability to express themselves to others. You would not know these things because CNN does not cover the "feel bad" autism stories, only the "feel good" autism stories.

CNN is a news organization and one would think that between interviews with Amanda Baggs they would find time to MENTION the fact that there are many seriously autistic persons who live desperate lives. They might, for example, cover the story of the middle aged autistic woman in a New York residential care facility who was physically abused and assaulted by attendants but lacked any means of telling anyone because she could not speak, write or type to tell what was happening to her. The situation came to light only after another attendant brought it to light and it was confirmed by video cameras in the facility. CNN might also tell the stories of autistic people who hurt themselves seriously by biting and head banging or those who simply wander off sometimes found safe and sound .... sometimes not.

CNN could tell you these stories but it won't because they are not "feel good" stories. Such stories are not as good for the ratings as the feel good stories. CNN would prefer to tell you, several times in fact, the story of Amanada Baggs an autistic persons diagnosed as an adult who types as a means of communication. CNN does not mention that Ms Baggs, before her autism diagnosis, and by her own voluminous internet writings, spoke to others, used speech to communicate, had friends, and attended Simon's Rock College for gifted young people. CNN does not give that full picture because it wouldn't make such a great feel good story. It makes for a much better story line to go along with the pretense that this person is non-verbal and communicates via technology.

At least CNN has started to feature autism stories other than Amanda Baggs of late. But once again it goes for the ratings oriented feel good stories. In Autistic poet gives rare glimpse into mystery illness CNN tells the tale of Tito Mukhopadhyay a non verbal Texas man previously thought to be retarded who can type and even write poetry. It is a genuinely heart warming story and I am happy for Mr. Mukhopadhyay and his family. And I do acknowledge that CNN does pay lip service to other more severe autism realities in this story ... with one line:

Whatever autism is, its symptoms range from a mild form to rendering individuals dependent on others for life.

Now if only CNN will actually do a feature on the lives of those autistic persons who CAN NOT communicate by keyboard or otherwise and who live their lives dependent on others. Maybe some day CNN will have an Anderson Cooper Katrina moment, cease with the "great job, Brownie" coverage of autism and show the world the harsh realities of life for those with serious Autism Disorder. Mr. Cooper has been part of the Amanda Baggs autism feel good spin so it probably won't come from him this time but maybe some younger journalist, a real journalist at CNN, will feel it is time to stop misleading the world about autism and show the whole range of autism realities. Real autism acceptance means accepting the harsher autism realities faced by many persons with Autism Disorder and their families.

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Vancouver Sun - The Many Faces of Autism

One fundamental point which is repeatedly ignored in discussions, debates and arguments over autism is that "autism" as discussed in the media is a spectrum of disorders which includes autism disorder and other related disorders eg. PDD-NOS, Aspergers. There are many faces of autism, many different characteristics. The Vancouver Sun has published a balanced and understandable overview of autism disorders and promises to present a series of stories portraying different aspects of the spectrum of autism realities.

http://tinyurl.com/2jxw2l

"To understand the many faces of autism, first consider what it is not

Pete McMartin, Vancouver Sun

Published: Saturday, April 21, 2007

........

Simply put, there is no one profile that fits those diagnosed with autism. So, to define what autism is, it might be best by pointing out what it is not.

IT IS NOT A MENTAL ILLNESS OR A DISEASE.

It is a neurological and, ultimately, a biological disorder that affects the normal development of the brain in areas of social interaction, communication and sometimes cognitive skills. Usually, that disorder manifests itself before the child reaches three. (More on those symptoms and their diagnosis in a later instalment.)

THE CAUSES OF AUTISM ARE STILL UNKNOWN.

.....

AUTISM IS NOT A SINGULARITY.

It is a spectrum of disorders. On that spectrum are five related disorders, the three most common of these being classic autistic disorder (AD), pervasive developmental disorder not otherwise specified (PDD-NOS) and Asperger's syndrome. They share some behaviours but not others. Those with AD, for example, are often withdrawn and can be completely non-verbal, while those diagnosed with Asperger's syndrome can have normal verbal and academic skills but have extreme difficulty interacting socially with others.

THERE IS NO MENTAL STANDARD OR MEDIAN FOR THOSE ON THE AUTISM SPECTRUM.

Some have below-average intelligence, some are average and some are above average.

Additionally, mental abilities can be uneven. A person on the autism spectrum might be able to do complex math but be unable to tie his or her own shoes.

Some are capable of holding jobs and of living independently or semi-independently; some have the intellectual capacity to work but not the social skills to make their way in the work environment; some must receive 24-hour care their entire lives.

AUTISM IS NOT CURABLE.

It is a life-long condition. As one parent of a 12-year-old girl diagnosed with severe autism said:

"Parents have to understand:

"This isn't a sprint. It's a marathon."

The initial symptoms, however, can be ameliorated through a combination of intensive early childhood therapy and, it has to be said, the fierce and protective love of parents and family.

See www.VancouverSun.com for more from the six-day special feature

TODAY:

The story of a severe case, and life at home with an autistic child.

MONDAY:

Two mothers, their tears, and the sacrifices they must make living with autism.

TUESDAY:

How the health care system discriminates against those on low income.

WEDNESDAY:

Immigrants and the special challenges they face in dealing with autism.

THURSDAY:

The high cost of therapy, and a mother's determination.

FRIDAY:

Two autistic teens and their families face an uncertain future."

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Combating Autism Act Spurs Autism Research

The following article from the Psychiatric Times gives a good, digestible, overview of some of the autism studies currently being conducted even as the Combating Autism Act spurs more research.


New Act by Congress Gives Boost to Autism Research
By Arline Kaplan

February 2007, Vol. XXIV, No. 2

The passage and signing in December of the Combating Autism Act (S. 843), which authorizes $945 million over 5 years for research, screening, intervention, and education on autism spectrum disorders (ASD) and developmental disabilities, has been hailed by the advocacy group Cure Autism Now (CAN) as a “federal declaration of war on the epidemic of autism,” a disorder that affects 1 in 166 children. 1 Yet, some battles are already under way at NIMH's Intramural Research Program, with patient recruitment proceeding for 3 major autism studies.

In a press statement, Jonathan Shestack, father of an autistic child and cofounder of CAN, a large private funding organization for autism research, said S. 843 (now Public Law 109-416) “creates a congressionally mandated road map for a federal assault on autism, including requirements for strategic planning, budget transparency, congressional oversight, and a substantial role for parents of children with autism in the federal decision-making process.”

Key provisions of the law, subject to the availability of appropriations, call for the following:

* Expanded research on ASD, including basic and clinical research in such fields as pathology, developmental neurobiology, genetics, pharmacology, nutrition, immunology, neurobehavioral development, and toxicology.
* The CDC to increase and update its efforts to monitor autism incidence and prevalence around the country and to support the establishment of regional Centers of Excellence in the epidemiology of ASDs and other developmental disabilities.
* Development of a curriculum for continuing education to assist in recognizing the need for valid and reliable screening tools and in using those tools.
* Early screening of individuals at higher risk for ASD and other developmental disabilities.
* Congressional oversight of the Autism Centers of Excellence.
* Expansion and reauthorization of the Interagency Autism Coordinating Committee, composed of relevant government officials, experts, families of those with ASD, and at least one individual who has ASD.

Autism trials

The NIMH studies on the NIH campus in Bethesda, Md, are the first products of a new, integrated focus on autism. One study, “Clinical and Immunological Investigations of Sub-types of Autism,” seeks to learn more about autism and its subtypes. “It is actually two studies in one,” said Susan Swedo, MD, chief of NIMH's Pediatrics and Developmental Neuropsychiatry Branch.

The first is a study of regressive versus nonregressive autism to determine whether there is an immune or other systemic trigger of children's neurologic regression, she said. It involves 50 children with idiopathic autism and regression, 50 children with idiopathic autism and no history of regression, 25 children with Rett syndrome, and 50 healthy children. The age range of all 4 groups is between 12 months and 48 months at first visit.

The second component to the study, Swedo said, is part of the Autism Phenome Project, a pilot investigation being conducted in collaboration with David Amaral, PhD, Beneto Foundation Professor and director of research at the M.I.N.D. Institute at the University of California, Davis. Between the 2 sites, the pilot phase of the phenome study involves 50 to 100 children with autism, 50 children with developmental delays, and 50 to 100 children without disorders. The purpose is to identify clinically meaningful subtypes of autism, which could lead to better understanding of the etiology and pathophysiology of the disorder.

Increasingly, researchers are considering that autism may be multiple disorders. The regressive subtype is well characterized, Swedo said, although there is some debate about how common it is. The reports vary from indicating that as few as 10% to as many as 40% of children with autism have a pattern of regression.

With regressive autism, Swedo explained, you have a history of the child developing typically until age 12 to 18 months with appropriate development of language and social skills and then the child loses words and social skills and begins to look indistinguishable from children who have had autistic symptoms from birth or early on.“Some investigators have found that the regressive subtype actually has a worse prognosis,” she said.

To explain the regression, Swedo said that the research team's working hypothesis is that there are environmental triggers or perhaps genetic aberrations that are expressed at this particular point in the child's development. One possibility based on Swedo's work with obsessive-compulsive disorder and the pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections subgroup is that regressive autism develops following a viral or bacterial infection that triggers an autoimmune response and neuropsychiatric symptoms.

The phenome study includes questions related to a child's exposure to environmental toxins and household products; neuroimaging (structural MRI); and biomarkers; as well as very careful behavioral, neurologic (eg, via electroencephalograms administered while the child sleeps in the hospital overnight), and physical assessments. “The children will be monitored every 6 months to a year until they are age 5, and then intermittently after that time” to examine the validity of their diagnosis and how their symptom course evolves over time, Swedo added.

Minocycline study

In another small-scale intramural study, Treatment of Childhood Regressive Autism With Minocycline: An Anti-Inflammatory Agent Active Within the CNS, NIMH researchers are examining the use of the antibiotic minocycline (Dynacin, Minocin, Myrac) in children aged 3 to 12 years with regressive autism.

“We are using minocycline, a tetracycline derivative, not for its effectiveness as an antibiotic but rather for its ability to modulate the immune system,” Swedo said. “It has fairly specific effects on NF-kappa B and therefore inhibits the initiation of the cascade that leads to inflammation. Published data from the Johns Hopkins group [2,3] demonstrate that brains of individuals with autism have evidence of chronic neuroinflammation. We hope that by stopping that process, the children will be able to recover some of their skills. We are conducting an open-label trial in 10 children and are accepting referrals. If the results are encouraging, we will do a placebo-controlled trial in a larger cohort of subjects.”

Asked about other pharmacologic approaches being investigated at NIMH, Swedo responded, “We have a few in [the] pipeline, but it is premature to talk about them. Eric Hollander, MD, has been doing some work with oxytocin, reported at the American College of Neuropsychopharmacology's annual meeting.”

Hollander, chairman of psychiatry at the Mt Sinai School of Medicine in New York and director of the Seaver and New York Autism Center of Exellence, and Jennifer Bartz, PhD, found that pitocin (synthetic oxytocin), administered intravenously or nasally, may have significant positive effects in adults with autism. Oxytocin, a hormone that is best known for activity during birth and lactation, is also a brain neurotransmitter involved in social recognition and bonding.

Chelation therapy

The third NIMH study, “Mercury Chelation to Treat Autism,” seeks to address whether chelation therapy can be helpful for autism. The chelation study is a placebo-controlled trial that involves use of meso-2,3-dimercaptosuccinic acid (DMSA, succimer), an orally adminstered chelating agent that binds to all metals including mercury and lead but also to some beneficial metals, such as zinc and iron, according to Swedo. DMSA is commonly used to treat autism, with some surveys estimating that 1 in 12 children with autism has undergone chelation, although it has never been tested in a controlled study and there is no proof that it helps children with the disorder. Support for its use is based on single-case reports of benefits of chelation with DMSA.

Children aged 4 to 10 years in whom autism, Asperger disorder, or pervasive child developmental disorders have been diagnosed; who weigh at least 33 lb; who have detectable, but not toxic, levels of mercury or lead in the blood; and who have not previously received chelation therapy may be eligible for this study.

“The chelation study is based on the hypothesis that mercury toxicity is responsible for at least some cases of autism,” Swedo said. She explained that extensive controversy surrounds the issue of mercury toxicity in autism. The Institute of Medicine (IOM) conducted a comprehensive study of the question of whether thimerosal, an ethylmercury-based compound used previously in the United States as a vaccine preservative for routine childhood immunizations, contributed to the apparent increase in the prevalence of ASDs. 4 The IOM panel concluded that there was no evidence for an association, but the report has been dismissed by some parents who report “toxic mercury levels” among their affected children and who have observed benefits of open-label DMSA administration.

To answer the question in a controlled fashion, the NIMH will enroll about 120 children in the chelation study, with half randomized to placebo and half to DMSA. The trial will last for 6 months, and researchers are enrolling participants now. “We would love to receive referrals,” Swedo said, adding that psychiatrists can find out more by going to www.clinicaltrials.gov or by contacting Lorraine Lougee, LCSW, research coordinator. Lougee's e-mail address is LougeeL@intra.nimh.nih.gov.

Incidence and prevalence

Because of recurrent questions about whether autism is increasing, Swedo was asked about incidence and prevalence. “We have absolutely no data on incidence,” she said. “We can say the disorder appears to be more prevalent now than it has been reported in the past. However, there was a major change in diagnostic criteria and case-finding methods, so it is unclear [whether] it represents a true change in rates of affected individuals. . . . The CDC is conducting several studies currently to address that question.”

There is increasing agreement on what true autism is, using the Autism Diagnostic Observational Schedule, a semistructured observational scale developed to assess social interaction, communication, and play in persons suspected of having autism, and the Autism Diagnostic Interview, Swedo said.

“Those 2 give you nice, reliable cutoffs where you can say a child has autism, is on the autism spectrum, or is developing typically. Including children on the autism spectrum will increase apparent prevalence rates,” Swedo said. “The figure of 1 in 166 children having autism was recently confirmed in a CDC study that reviewed school records and confirmed the diagnosis from medical records. But the study included all children with an ASD as having ‘autism'—this included not only severely affected individuals with full-blown autism but also those with a pervasive developmental disorder not otherwise specified and those with Asperger disorder, a condition [that] is not as impairing.”

“In order to determine the true prevalence of autism and to know whether there is an ‘epidemic' as some have asserted,” Swedo continued, “we need to have better data about the current prevalence of autism and related disorders and then compare those data with comparable data from previous studies. The CDC is conducting surveillance studies at a number of US sites, and the NIH is sponsoring longitudinal investigations here and abroad to address those questions.”

References

1. Centers for Disease Control and Prevention. How common are autism spectrum disorders (ASD)? Available at: http://www.cdc.gov/ncbddd/autism/asd_common.htm. Accessed January 5, 2007.
2. Pardo CA, Vargas DL, Zimmerman AW. Immunity, neuroglia and neuroinflammation in autism. Int Rev Psychiatry. 2005;17:485-495.
3. Vargas DL, Nascimbene C, Krishnan C, et al. Neuroglial activation and neuroinflammation in the brain of patients with autism [published correction appears in Ann Neurol. 2005;57:304]. Ann Neurol. 2005;57:67-81.
4. Board on Health Promotion and Disease Prevention, Institute of Medicine. Immunization Safety Review: Vaccines and Autism (2004). Available at: http://www.nap.edu/books/030909237X/html/1.html. Accessed January 5, 2007.

http://www.psychiatrictimes.com/showArticle.jhtml?articleId=197002523&pgno=1

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