Autism Reality

Autism Every Day – The Realities of Raising Severely Autistic Children

The film Autism Every Day will soon show – January 22 and 27 – at the Sundance Film Festival. Like many efforts to treat or educate autistic children or to speak about the realities of some autistic persons this film has generated criticism amongst some autistic persons, caregivers and professionals who do not believe that Autism is a disorder. From that perspective autism is simply a variation of human existence neither inherently better or worse than any other variation.

Personally, as the parent of a severely autistic 11 year old boy who I love with all my being, I appreciate the courage of the parents in the film who have told the stories of their children, and their families, for the world to hear. The world should understand that, while there are many very intelligent, articulate and talented persons with autism, there are also many autistic persons with severe intellectual, communication, sensory and behavioral challenges. These challenges pose serious risks to the health, safety and lives of the autistic children themselves and to family members. The reality is raisng and genuinely caring for severely autistic children takes an enormous toll on families, even with the great joy which the same children can bring to our lives.

I have not seen the entire 44 minute version of Autism Every Day. I have viewed the shorter version, which is on line at the Autism Speaks web site, and can be found at this link:

http://www.autismspeaks.org/sponsoredevents/autism_every_day.php

I thank the makers of Autism Every Day the parents who appear in the film, their autistic children and other family members for describing their realities, their challenges.

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January 20, 2007 Posted by | autism, autism disorder, autism every day, autism speaks, sundance film festival | 6 Comments

Goody Bledsoe Signing By Heather Doherty






Conor’s mom, Heather Doherty, signing and reading from Goody Bledsoe at Westminster Books in Fredericton January 18 2007.

January 18, 2007 Posted by | bledsoe, book, Conor, doherty, literature, oberon press | 4 Comments

Breaking the Autism Taboo (2) – The Harris Family of North Texas

In a recent post I commented on the fact that those speaking truths about the difficulties faced by many autistic persons and the families and other caregivers who love and care for them are often set upon by internet posters who criticize, mock and ridicule them. But such pressure is not forcing parents of severely autistic children into silence. The Harris’s of North Texas have told their story and that of their 16 year old son Colton. It is a haunting tale but one which many parents of severely autistic children are familiar with. Parents of children like Colton Harris do not give up on their children. They continue to love and care for them at great expense to their own health, finances and emotional well being.

I applaud the Harris’s for speaking out and telling their story.

http://www.sanluisobispo.com/mld/sanluisobispo/news/nation/16479635.htm

FORT WORTH, Texas – As a little boy, Colton Harris punched his fist through living room walls and bedroom windows.

Sometimes he would twist his pale thin legs like a contortionist. Twice he bent his ankle until it broke.

Now 16, Colton is the size of a man, but with three times the testosterone. Instead of shoving his fist through a wall, he slams his body into it. Just after Thanksgiving, he knocked out the only windowpane in the family’s north Fort Worth home that had not been replaced with Plexiglas.

Colton’s parents worry as their autistic son grows older, stronger and more aggressive. In five years, Colton will no longer be eligible for special-education services.

The Combating Autism Act signed by President Bush last month authorized $920 million in federal funds over five years to pay for research, education, screening and intervention. Advocates praised leaders for acknowledging autism as a healthcare crisis. Others say there’s too much focus on research when services require more immediate attention.

“We also have got to do something for the here and now,” said Anna Hundley, executive director of the Autism Treatment Centers, which have offices in Dallas and San Antonio. “It’s like cancer; you have to find out the cause, but you have to treat the disease, too.”

“Most people’s idea of autism comes from the movie `Rain Man,'” said Anne Dachel, a member of the National Autism Association.

But the disorder affects children in different ways. Some can grow up to be fully functioning adults. For example, some children with Asperger syndrome, sometimes dubbed “autism light,” can graduate from college, hold jobs and live independently. Others will always be dependant on caregivers.

Nearly bankrupted by the cost of caring for their son, Colton’s parents aren’t sure what kind of future he faces.

“My greatest fear is that one day we’re not going to be here for him,” Harris said. “It haunts me day and night.” Raising Colton has meant no family vacations, dinners out or even a moment of relaxation.

He is among the 40 percent of autistic children who are nonverbal. He cannot use the toilet by himself.

As a child, Colton typically became aggressive when he was in pain caused by a gastrointestinal disorder common among autistic children. The outbursts became more frequent and aggressive with adolescence.

“It would get so bad that he would dig his teeth into anything or just bang them into stuff,” Harris said. “You’re thinking, please, God, don’t let him break his teeth.”

Aggression, aimed at themselves and others, is not uncommon among people with autism, Karni said. But it’s often because they become extremely anxious. As they age and get bigger, it becomes more of any issue, she said.

Colton was 14 before doctors diagnosed him with autism.

The family tries to keep the furniture clean and the floors swept, but Colton is tearing apart the house a piece at a time. His parents have learned to set their routines around Colton and to ignore the incoherent sounds coming from his bedroom.

“You try to do your best, but what can you do with a child that is just not there?” Harris said. “This is a 24-hour-a-day, in-your-face-with-no-breaks life.”

Yet they refuse to give up.

“He’s still your kid, and you love him,” said Harris, who will not consider institutionalizing Colton. “My fear is that since he can’t speak people will take advantage of him.

January 17, 2007 Posted by | autism, family, treatment | 1 Comment

Early treatment of autism hinges on genetic discoveries

Much attention has been paid to purported environmental causes of autism. Controversy has raged over both the MMR vaccine itself and the use of thimerosal, a mercury based preservative used in vaccines as a potential cause of autism.

As prominent a figue as Robert Kennedy Jr has pushed the thimerosal theory before the US Congress and the world. There is however precious little scientific support to date for the vaccine/thimerosal theories. Recent environmental theories include Lyme Disease and television as possible causes of autism.

Notwithstanding the focus on potential environmental causes of autism it is heartening to read that research continues on genetic factors. Genetic research is an important element to the early identification and treatment of autism including development of specific treatments for individual autistic persons as discussed in a very readable article by Dr. John Bernard, president of the Children’s Research Institute, published in the Columbus Dispatch:

Identical twins have identical genes, while fraternal twins are genetically similar, but not identical. When identical twins have autism, both are affected about 60 percent of the time, whereas fraternal twins are both affected only about 5 percent of the time.

These findings strongly suggest a genetic basis for many cases of autism.

But current thinking is that autism spectrum disorders do not result from genetic factors alone. It is likely that unknown environmental factors also are involved, perhaps as a result of genetic susceptibility.

It is probable that each of the autism spectrum disorders is associated with a specific genetic abnormality. However, scientists involved in the search for specific genetic abnormalities in autism are challenged by the complex variability of individual cases.

Unless individual children can be accurately and specifically classified within the autism spectrum, the search for underlying genes is clouded. Fortunately, specific genetic abnormalities are now being discovered for some of the rare and distinctive types of autism spectrum disorders.

Discovering specific genetic abnormalities associated with autism spectrum disorders might help detect them earlier in life than currently is possible.

Children then could receive customized treatment programs at the earliest possible age, when the prospect for success is best. It is also possible that drug treatments can be designed by researchers to specifically modify the genetic abnormality involved.

http://www.dispatch.com/science/science.php?story=dispatch/2007/01/16/20070116-D5-04.html

January 17, 2007 Posted by | autism, Bernard, causes, environment, genetics, health, Kennedy, Lyme Disease, research, thimerosal, treatment, vaccines | Leave a comment

School Inclusion Can Be Abuse

School inclusion ‘can be abuse’. That is the title of a BBC on line story which includes a report on a recent study of the British inclusive education system prepared for that country’s National Union of Teachers “The Costs of Inclusion” by John MacBeath, Maurice Galton, Susan Steward, Andrea MacBeath and Charlotte Page, published by University of Cambridge Faculty of Education. Professor John MacBeath of Cambridge was interviewed and stated that placing some students in a mainstream classroom could be seen as a form of abuse:

Physically sitting in a classroom is not inclusion. Children can be excluded by sitting in a classroom that’s not meeting their needs.” The typical secondary school timetable – rushing from physics, to history then French, say – was for some children as bewildering as being “on another planet”. “You might call it a form of abuse, in a sense, that those children are in a situation that’s totally inappropriate for them.” Professor MacBeath also indicated that the report is not “anti-inclusion” , just that mainstream classroom inclusion is not appropriate for all students, particularly those with complex needs.

The BBC story and the “Costs of Inclusion” report can be found at:

http://news.bbc.co.uk/2/hi/uk_news/education/4774407.stm

http://www.teachers.org.uk/resources/pdf/CostsofInclusion.pdf

I have personally argued against placement of all autistic children in mainstream classrooms as has the Autism Society New Brunswick which asks that the school system look at what works for each individual child. If a child does not learn in, and is overwhelmed by, a mainstream classroom then he or she should not be placed in that environment. A quieter environment is necessary for some autistic children who also require more individualized instruction. Flexibility in choice of learning environment is needed. Some autistic children are capable of learning in a mainstream classroom. Some are not. It is critically necessary to examine the evidence and see what works for the individual child. Failure to place an autistic child in the right learning environment because of a rigid adherence to the philosophy of mainstream classroom inclusion for all may constitute abuse.

http://news.bbc.co.uk/2/hi/uk_news/education/4774407.stm

January 16, 2007 Posted by | autism, autism education, education, evidence based, inclusion, philosophy | 3 Comments

Please Honor Premier Graham’s Autism Training Commitment

January 14 2007

Hon. Victor Boudreau
Minister of Finance

Dear Hon. Minister Boudreau:

I am writing to ask that you honor the commitment made by now Premier Shawn Graham during the recent election campaign during which time he promised to provide training for 100 Teachers’ Aides and Resource Teachers per year for the next four years at the UNB-CEL Autism Intervention Training program. The fulfillment of this promise is of vital importance to the education of autistic children. These children are not receiving the “cadillac treatment” in New Brunswick schools right now. Far from it.

For many autistic students fulfillment of Premier Graham’s promise will mean the difference between staying in school and not being sent home because teachers, aides, and other professionals did not understand their behavior and the conditions in the schools which can seriously disrupt environmentally sensitive and communication challenged children. For a great many others it will mean the difference between receiving a real education and simply being babysat as a false testament to New Brunswick’s inclusive education system. Teachers can not commit the time and attention needed to educate autistic children properly and instruct the rest of the class. Most autistic students need TA’s for safety reasons. It makes no sense whatsoever not to provide autism trained TA’s to assist them in learning. The UNB-CEL program is top notch and offers training in autism and the methods that work in educating autistic children.

My profoundly autistic son is almost eleven years of age. The previous government dragged out the Interdepartmental Committee Report on autism services for two years before issuing a report in 2001. The report went unread for another year by the lead minister charged with the autism portfolio. Most of its recommendations remain unfulfilled. My son is growing older. He has had properly trained TA’s for two of his six school years but even now with an excellent well trained TA she is not permitted to spend the full day with him and there is no one to replace her when she is absent for personal reasons. Many autistic students have TA’s with no autism specific training or no TA at all.

Do not underestimate the importance of the Premier’s commitment to train TA’s and Resource teachers to work with our autistic children Mr. Boudreau. They have lost out too long. They need autism trained personnel to help them learn and they need them now. Delay is not an option. Understand their needs, respect the Premier’s commitment and authorize the necessary funding.

Respectfully,

Harold L. Doherty
Fredericton NB

cc. Education Minister Lamrock
Justice Minister & Fredericton-Nashwaaksis MLA Burke
Autism Society New Brunswick

January 14, 2007 Posted by | aba, autism, commitment, education, funding, honor, TA's, teachers, training | 1 Comment

David Celiberti Workshops at UNB Wu Centre Jan 25-26 and Feb 22-24 2007

The UNB-CEL Autism Intervention Training Program is sponsoring two excellent workshops by Dr. David Celiberti, President of the Association for Science in Autism Treatment, (ASAT), and ABA Parent Professional Partnership SIG.

http://extend.unb.ca/prof_dev/programs/ait.php

Core Workshop: Behaviour Management
January 25-26, 2007

This 2-day core workshop will examine how behaviour analysis is a humane but also a practical and effective way to eliminate challenging behaviours. It will examine the functions motivating challenging behaviour, the phases involved in setting up effective interventions through to the development of a written plan. It will also take the participant through specific intervention techniques such as DRO, shaping, escape extinction, response cost, etc.

Instructor: Dr. David Celiberti, BCBA

In 1993 David completed his Ph.D. in Clinical Psychology from Rutgers University. David is the Past President of the Autism Special Interest Group (SIG) ABA and now is the President of the ABA Parent Professional Partnership SIG. He is also the President of the Association for Science and Autism Treatment (ASAT). David has authored research articles and consults to programs.

Cost: $347.50 (plus HST) AITP past graduates (open to CS and ASW)
$695 (plus HST) Professionals in the field of Autism

Location: Wu Conference Centre, UNB’s College of Extended Learning

Registration Deadline: January 11, 2007

Behaviour Management Registration Form
The registration form is in .pdf format.

For More Information
Kelly Pickard 506 447-3469 or kpickard@unb.ca

Advanced Workshop: Generalization and Program Writing
February 22-24, 2007

This 3-day advanced workshop will look at the various forms of generalization (stimulus, response, and temporal) along with specific methods that will increase the success at generalization (such as individualized programs tailored to the target behaviour). The two days on program writing will look at what makes a good program, what an overall program might look like, and will look at specific examples of programs identifying gaps that need to be filled. These sessions will be interactive.

Instructor: Dr. David Celiberti, BCBA

January 13, 2007 Posted by | aba, autism, behavior, education, learning, psychology | Leave a comment

Autism DNA Databank

The creation of a DNA databank by researchers from 11 universities should spur the growth of knowledge about the genetic basis of autism. Hopefully the 3 year project will shed much needed light on a subject often characterized by heated emotion and entrenched positions.

11 research universities creating DNA databank for autism research with $10 million grant

The Associated Press
Published: January 10, 2007

ANN ARBOR, Michigan: Researchers at 11 universities will create a databank of DNA samples from 3,000 autism patients in an effort to identify different kinds of autism and develop treatments.

The University of Michigan will lead the three-year, $10 million (€7.7 million) effort funded by the Simons Foundation, the school announced this week.

The New York-based philanthropic group aims to spend $100 million (€77 million) long-term to find a cure for the developmental disorder that affects one in 200 children.

Adults and children with autism lack normal brain development in areas linked to social interaction and communication, but scientists do not know how many subtypes may exist. The gene data could help identify those types and treat newborns, said Catherine Lord, director of the Ann Arbor university’s Autism and Communication Disorders Center.

http://www.iht.com/articles/ap/2007/01/10/healthscience/NA-SCI-US-Autism-Research.php

January 10, 2007 Posted by | Uncategorized | 1 Comment

Lyme Disease Induced Autism????


Lyme Disease Induced Autism??? Good grief Charlie Brown, what next? Turn the page on the calendar and it seems that a new cause has been found to explain what causes autism. MMR vaccines, thimerosal, Television, older dads (that one struck a chord with me as an older dad) now Lyme Disease is being touted as a primary cause of autism (purportedly 90% of children with autism are infected with Lyme Disease). I am amazed by this one because I did not know that Lyme Disease was that widespread and did not know that data had been kept correlating LD in some way with Autism. Meanhwile there is actually a Lyme Induced Autism Foundation which has been formed by parents and they are hosting a physician’s think tank session January 26-28 in San Diego. Lyme Induced Autism? I will try to keep an open mind as the research continues but after all the thimerosal controversy I say show me the proof.

Why are doctors saying that up to 90% of children with autism are infected with Lyme disease? The Lyme Induced Autism Foundation is holding a physicians’ Think Tank on January 26-28th in San Diego, CA to discuss this recent finding.

Corona, CA (PRWEB) January 9, 2007 — New reports indicate up to 90% of children with autism are infected with Lyme disease. With autism at a staggering 1 out of 166 children, parents are questioning this new finding.

Doctors and parents alike have been examining the potential causes of autism for years, some of which include thimerosol filled injections, environmental factors and most recently Lyme disease. With more doctors supporting the link between Lyme disease and autism, parents have joined forces to create the Lyme Induced Autism Foundation.

The foundation is holding a physicians’ Think Tank on January 26-28th in San Diego, CA to discuss this recent finding. Co-founder Tami Duncan states, “The Think Tank is an opportunity to bring the Lyme disease specialists and the autism specialists together to create testing and treatment options for our kids.” This is a groundbreaking effort which hopefully will analyze this even further to provide some answers to families.

Duncan says, “We are not saying that Lyme disease is the exact cause of autism for every single child. Let me clarify; what we are saying is that Lyme Disease could be an inciting factor that is suppressing the child’s immune system, which would make them more susceptible to heavy metal toxicity, environmental factors, etc. There are a large subset of autistic children in which this is happening. However, most children with Lyme Induced Autism cannot begin to heal until this infection is under control. Parents want their children healed of autism.”

Where is the proof that Lyme disease is a factor in autism? Currently, several doctors have stepped forward talking about this. Dr. Warren Levin of Vienna, VA recently appeared on the online radio show on http://www.autismone.com hosted by Duncan called “The Lyme-Autism Connection”. He stated that of the 10 children with autism he tested for Lyme disease, 100% of them also came back positive for Lyme disease.

But more proof is needed to convince parents and the medical community to take action. The Lyme Induced Autism Foundation has announced its first fundraiser called “Laughter for Healing” at the Improv comedy club in Irvine, CA on February 24th, 2007.“

http://www.prweb.com/releases/Lyme_disease/Autism/prweb495433.htm

The Lyme Induced Autism Foundation site can be found at:

http://www.lymeinducedautism.com/

January 10, 2007 Posted by | Uncategorized | 1 Comment

Goody Bledsoe by Heather Doherty

I am breaking with the autism theme of this site briefly to introduce my wife Heather’s first published novel – Goody Bledsoe. Attached is a brief description from the publisher’s (Oberon)’s web site.

Heather Doherty

Goody Bledsoe

Goody Bledsoe is the story of a young girl who is sent as an orphan to live with her aunt and uncle on a farm in rural New Brunswick . Heather Doherty says of it: “This is a story of survival, of choosing to survive in spite of the darkness, in order to find the light that lies beyond.” In another mood she says: “Goody Bledsoe is a novel of daring, daring to see what lies within, even when that knowledge hurts like hell.”

This is what David Adams Richards has to say about the book: “ Heather Doherty has written an exceptionally moving and brilliant first novel, a startlingly permanent novel that must be read.” Heather Doherty was born in 1964 and grew up in New Brunswick , where she still lives with her husband and two sons. As this is written she’s working in the local library and writing her second novel.

January 8, 2007 Posted by | Uncategorized | 2 Comments