Autism Reality

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

ABA Most Effective In Educating Autistic Children

In New Brunswick an interdepartmental committee was struck (Health, Education and Family Services) to study services available for autistic persons in New Brunswick and make recommendations. It sat from 1999 to 2001 and issued its report in November 2001. Its report then went unread by the lead Minister of the day, Health Minister Elvy Robichaud, for a further year. The committee studiously avoided making any recommendations about the effectiveness of any particular intervention.

The criteria for “Community” Autism Centres seeking funding from the government has required that these centres not promote any specific intervention and instead provide information on various interventions. Meanwhile our good neighbors in the State of Maine took a different approach. There the stakeholders group involved in education of autistic children examined the professional literature concerning efficacy of autism interventions and concluded in the MADSEC Autism Task Force Report 1999, revised Feb. 2000, that ONLY Applied Behavior Analysis (ABA) could be said to be evidence based effective intervention for educating autistic children. Since then specific studies have confirmed the superiority of ABA in educating autistic children. The Lovaas site has an excellent summary of the most significant of the hundreds of studies which substantiate ABA as the intervention of choice in educating autistic children:

Research Articles

Between 1985 and 2005, there were over 500 articles published concerning Applied Behavior Analysis and autism. Here is some of the key information from those sources.

1987 study by Dr. Lovaas

Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.

Original research in peer-reviewed journals indicating that 90% of children substantially improved when utilizing the Lovaas Model of Applied Behavior Analysis, compared to the control group. Close to half attained a normal IQ and tested within the normal range on adaptive and social skills.

1993 follow up study

McEachin, J. J., Smith, T., & Lovaas, O. I. (1993
). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 97 (4), 359-372.

Follow-up research in early adolescence showed that children in the 1987 study maintained their skills and could succeed in life without costly special education and residential services.

1998 cost-benefit analysis of intensive, early behavioral intervention.

Jacobson, John W., Mulick, James A., & Green, Gina. (1998
). “Cost-Benefit Estimates for Early Intensive Behavioral Intervention for Young Children with AutismÑGeneral Model and Single State Case.” Behavioral Interventions, 13, 201-226.

Demonstrates that providing behavioral treatment to all children with autism for three years, delivered between the ages of 2 to 6 years, would save approximately $200,000 per child for ages 3-22 years and up to $1,000,000 per child for ages 3-55 years. The savings per child even takes into account that some children will not benefit at all from behavioral treatment and some will only make modest gains.

1999 report from the New York State health department
Recommends a minimum of 20 hours per week of individualized behavioral interventions using ABA techniques, based on strong evidence in the research

2000 report from the Surgeon General
Acknowledges the efficacy of applied behavioral methods in the treatment of children with autism and cites the “well-designed study carried out by Lovaas and colleagues”

2002 study by Dr. Eikeseth directly comparing two treatments

Eikeseth, Svein, Smith, Tristram, & Eldevik, Erik Jahr Sigmund. (2002). Intensive Behavioral Treatment at School for 4- to 7-Year-Old Children with Autism. Behavior Modification, 26, 49-68.

Demonstrates that a focused behavioral treatment program is far superior than an eclectic special education approach that uses a variety of treatments. (Children in both groups received the same number of hours of treatment by qualified personnel.)

2005 replication study by Dr. Jane Howard directly comparing two treatments

Howard, Jane S. , Sparkman, Coleen R., Cohen, Howard G., Green, Gina, & Stanislaw, Harold. (2005). A Comparison of Intensive Behavior Analytic and Eclectic Treatments for Young Children with Autism. Research in Developmental Disabilities, 26 (4), 359-383.

Again demonstrates that a focused behavioral treatment program is far superior than an eclectic special education approach that uses a variety of treatments. (Children in both groups received the same number of hours of treatment by qualified personnel.)

2005 study by Dr. Sallows, replicating the 1987 Lovaas study results

Sallows, Glen O. & Graupner, Tamlynn D. (2005). Intensive Behavioral Treatment for Children with Autism: Four-Year Outcome and Predictors. American Journal on Mental Retardation, 110 (6), 417-438.

Replication study of the Lovaas Model of Applied Behavior Analysis by an independent author. Dr. Sallows states, “We found that 48% of all children showed rapid learning, achieved average posttreatment scores, and at age 7, were succeeding in regular education classrooms. These results are consistent with those reported by Lovaas and colleagues (Lovaas, 1987; McEachin, Smith, & Lovaas, 1993).”

2006 study by Dr. Cohen Howard, again replicating the 1987 Lovaas study results

Cohen, Howard, Amerine-Dickens, Mila, Smith, Tristram. (2006). Early Intensive Behavioral Treatment: Replication of the UCLA Model in a Community Setting. Journal of Developmental & Behavioral Pediatrics, 27 (2), 145-155.

Another replication study of the Lovaas Model of Applied Behavior Analysis by an independent author. Children in behavioral treatment scored significantly higher in IQ and adaptive behavior scores than the comparison group. Further, 29% (6 of 21) children were fully included in regular education without assistance and another 52% (11 of 21) were included with support. This compares to only 5% (1 of 21) children in the control group who were placed in regular education.

Despite this wealth of literature supporting the efficacy of ABA as an educational intervention for autistic children there remains opposition to its use for that purpose. There are many ulterior motives some cost based others emotion based. Arguments are also advanced on the basis that studies generally are not based on a random assignment to control groups. What these criticisms ignore are that as the trial judge in the Auton case concluded after reviewing the expert evidence in that case, whether done by design or not the assignments did not indicate any bias in group assignment – the assignments were not substantially different than they would have been under pure random assignment. Such criticisms also gloss over the ethical problems posed by random assignment to groups in which children would receive educational interventions which are generally believed not to be effective in educating autistic children.

The criticisms also ignore the reality that children have to be educated now. Parents will not accept waiting another generation for academics and anti-ABA die-hards to be convinced. Our children need to be educated now. Hundreds of studies support the efficacy of ABA in educating autistic children. It is long past time to give our children the opportunity of a real education and development to the best of their potential.

January 6, 2007 Posted by | Uncategorized | 8 Comments

Autism Every Day at the Sundance Film Festival

Autism Every Day will be featured at the Sundance Film Festival on beginning on January 21, 2007 with further screenings on January 22 and 27. The film presents the struggles of families raising autistic children. The special screening at the Sundance Film Festival should help raise autism awareness from the perspective of family life and family members who are both blessed – and challenged – by their autistic child or sibling. Recently an article appeared in the Richmond Times-Dispatch which focussed on the pressures and stresses on families resulting from raising a severely autistic child. Very recently Kim Stagliano posted a commentary on the Huffington Post about the challenges of raising three autistic children. Her attempts to prevent the very real, and serious challenges of feces smearing of three autistic children, in a humorous light met a firestorm of criticism from high functioning autistic persons on the internet who felt offended by Ms. Stagliano’s comments not about them but about her own children.

Hopefully the efforts of the producers of Autism Every Day, the Richmond family, Ms. Stagliano and others like them will continue. People should know the truth. Autism is not just about savants or those capable of posting complex sophisticated monologues on the internet. It also includes those with severe communication, intellectual and behavioral challenges. The realities of these autistic persons – and those who actually care for them in their daily lives – should also be known to the world. Autism Every Day and its highlighting at the Sundance Film Festival should help ensure that those realities are not hidden out of public view.

Details of “Autism Every Day” and the Sundance Film Festival can be found atthe Autism Speaks web site:

January 5, 2007 Posted by | Uncategorized | 3 Comments

Please Stop Police TASER Use

LETTERS TO THE EDITOR – Telegraph Journal, New Brunswick

Published Saturday December 30th, 2006
Appeared on page A5

Please, cabinet, stop police TASER use

Dear Honourable Premier and Honourable Ministers:

As the father of a 10-year-old autistic boy with severe communication challenges I have long been aware that persons with autism and other disorders which impair communication skills have on occasion been TASERED by police forces in North America; in some part because police will use TASERS when dealing with “unruly” persons who do not respond to commands, just as they sometimes use forceful takedowns in effecting arrests of such persons. I am concerned about the use of such dangerous weapons on New Brunswick citizens by our police forces.

The announcement by New Brunswick’s Chief Coroner, Dianne Kelly, that she has set a date for an inquest into the death of Kevin Geldart, 34, who had been reported missing from a Moncton hospital ward on May 5, 2005 and who died after Moncton police used a TASER gun on him later that day, increases my concern, as does news that the Fredericton City Council has voted to authorize the purchase of TASERS for use by Fredericton City police officers.

TASER use has raised concerns around the world and its use has preceded the deaths of approximately 50 people in North America since 2001. A TASER is a weapon which discharges a high voltage shock, causing immediate and total loss of muscle control.

Amnesty International has called for cessation of TASER use by police forces pending further study of their safety and has stated that the use by police forces of TASER weapons contravenes international standards prohibiting torture or other cruel, inhuman or degrading treatment as well as standards set out under the United Nations (UN) Code of Conduct for Law Enforcement Officials and the Basic Principles on the Use of Force and Firearms by Law Enforcement Officials.

Please be safe not sorry. You have great and necessary responsibilities to weigh on your consciences. The unnecessary death of New Brunswick citizens should not be among them.

I ask that your government prohibit the police use of TASERS or at least suspend such use until your government has studied their safety and you personally feel comfortable with their use on New Brunswickers.


January 5, 2007 Posted by | Uncategorized | Leave a comment

More Conor Holiday Fun

The holiday period was a lot of fun this year. We traveled to Nova Scotia and visited family. Conor loves to go on drives in the “silver car”, especially long drives. Here is Conor enjoying the trip in the car, wrestling with Dad in the hotel room and back home munching some Doritos (Conor’s favorite treat) at one of his favorite treat spots.

January 3, 2007 Posted by | Uncategorized | 4 Comments

Breaking Autism Taboo – Speaking Truths About Raising Severely Autistic Children

Michael Burke of Henrico County Virginia has broken the autism taboo about speaking openly and publicly about the challenges, stresses and pressures of raising severely autistic children. He has spoken about the pressures and stresses placed on family members and the injuries and risks his family were exposed to. Mr. Burke’s public disclosure of these realities will meet with sympathy from some but will also likely result in public criticism, even ridicule and condemnation from some self appointed experts who do not believe that autism is a disability just a variation on human nature that should be appreciated.

As the father of a severely autistic 10 year old boy I understand first hand some of the realities Mr. Burke describes. My son Conor brings me great joy and strength but his severe autism also poses great challenges. I thank Mr. Burke for speaking openly and honestly and for providing other parents an outline of some of the realities that may confront us as our severely autistic children grown older. The Richmond Times Dispatch also deserves credit for covering this aspect of the story. Attached are links to the Richmond Times-Dispatch story and Mr. Burke’s letter. I have also posted an excerpt from the article and the edited version of Mr. Burke’s letter.

Richmond Times-Dispatch

“Autism leads to hard decision
Terrible heartbreak, major relief

Mike Burke used to tell people he hadn’t had a decent night’s sleep in 10 years.

They thought he was kidding.

He didn’t tell them about his failing health, his falling income or his wife’s nervous breakdown. He didn’t talk about being choked by his young son as he drove down the highway or cleaning up after the boy following yet another out-of-control outburst at 2 o’clock in the morning — or simply trying to comfort a child who couldn’t be comforted.

He didn’t say much about the living hell his home had become as he and his wife, Pam, tried to raise a child with severe autism.

“It was horrible,” said Burke, who works as an investment adviser. “We just tried to stick it out.”

However, the sleepless nights and unending days finally wore them down. Eventually, the Burkes, who live in Henrico County, did what years before would have seemed unthinkable to them: They placed their only child, Ryan, in a youth group home shortly after his 16th birthday in 2003. It was a terrible heartbreak and a major relief.

“As much as we love him,” said Pam Burke, “I couldn’t do it anymore.”

Letter from Michael L Burke

“Editor’s note: This is an edited essay written by Michael L. Burke of Henrico County. He invited The Times-Dispatch to publish his letter in hopes of letting other families know they are not alone.

Hello, my name is Michael Burke, and my son’s name is Ryan and this is our story.

The past 19 years have been the most difficult and painful time in my life, and I would like to share it with you. I write this story as part of my therapy in my efforts to deal with these past years of heartache and pain.

Everything you read in this article is true although some parts of it may be difficult to believe.

March 3, 1987:

I remember the weather was mild back in March of 1987, as winter was easing and signs of spring were in sight. On March 3, 1987, our son, Ryan, was born . . . and it was a great day.

My wife, Pam, and I had been married for 11 years then, and Ryan was our first child. When we brought Ryan home from the hospital, our neighbors had placed a banner across our front yard saying, “It’s a Boy!”

Later that day, both our families came over to meet Ryan and congratulate us on our new addition to the family. Ryan was the first new baby on either side of our families and everyone was anxious to see him.

My first thoughts during that first week were that of excitement. I was going to be a great dad and teach Ryan how to play football and baseball and all the sports. I was also focused on giving Ryan the best education that I could afford.

The first several years of Ryan’s life went somewhat normal, but he was having trouble sleeping and staying asleep. He often had ear problems and cried a lot during the night and sometimes during the day. We figured that these problems would pass and things would become more normal as he got older.

Between the ages of 3 and 4, we noticed that Ryan was not socializing with other kids and his vocabulary was lacking. His overall condition was worsening and on the advice of his pediatrician we took him to see several different doctors who specialized in childhood problems. I had taped Ryan crying and screaming all night long and played it for the doctors so they could actually hear what a typical night was like. After examining him and testing him, the diagnosis was autism.

Our dreams, our world, everything was crushed as we listened to the doctors tell us about what we could expect in the future. We did not want to accept this diagnosis and tried in vain to help our son. We did brain scans and MRIs and took Ryan to New York and Cleveland [to see specialists]. But nothing worked.

As the years passed, his condition continued to decline and more problems began to surface. In addition to the crying and not sleeping, Ryan started experiencing severe ear problems causing him extreme pain. The doctors simply said that these episodes were a part of autism and there was nothing they could do.

During these episodes, Ryan would lash out at us, punching us and breaking furniture and household items and anything he could get his hands on. I remember driving down I-64 with Ryan in the back seat experiencing an ear attack and him reaching up and choking me as I was driving. These events were constantly happening to both of us and to any courageous caregiver willing to watch Ryan for any length of time.

By the time Ryan was 7, my wife had broken down and was suffering with anxiety, depression and fatigue. The years of no sleep and frustration had taken its toll on both of us as the stress would not let up. In addition, my income was dropping along with my job performance and now we were living in a small rental house that I had purchased years before . . .

As Ryan entered his teen years, things became more difficult, as his physical size and strength were that of a young man. We have now lost most of our help as our families and our caregivers can’t handle his size anymore. Because of his size, we were now pleading with his social worker for more help and for a possible placement for him . . .

At this point in time it was not about Ryan anymore, it was about us — on a scale of one to 10, our quality of life was a 5. I had lost all hope now and I wondered what Ryan’s purpose on this earth was, because it didn’t make any sense.

By the time Ryan reached 15, the situation had gotten even worse as all of Ryan’s problems were in full force. At this point in time, Ryan was on a list for placement into a children’s group home scheduled to open in the spring of 2003. We needed to make it one more year and this was the hardest year of all.

It was difficult because my health was failing and we had no help at night in dealing with the stress. I was having chest pains and extreme high blood pressure and spending many daytime hours at the doctors’ office. I would have to get up at night and change my socks because they were soaked in sweat from the elevated blood pressure.

As Ryan arose at 2 a.m. or 3 a.m. on those nights, I was on my own, the last man standing — I was like a dying soldier trying to make my last stand as I fought off my physical problems to deal with his. My wife attempted to assist me during those midnight episodes, but the years of wear and tear on her made this task almost impossible.

How we made it through, I’ll never know.

Finally, on March 12, 2003, the group home opened, and Ryan was the first one enrolled. That first night was difficult on Ryan as he did not want to accept his new living arrangement. He kept telling me, ‘Daddy, I want to go home.’ I looked him in the eyes and said, ‘Son, I can’t do that. This is your new home now,’ and we all cried.

Today, Ryan is 19, and has accepted his new living arrangement and is doing somewhat better. His ear problems have ceased, he is using the bathroom more and is participating in school better. We see Ryan on Sundays now for pizza and ice cream, and we all enjoy the visits very much.

I would like to thank the following people for helping us during these trying times.

Thank God for St. Joseph’s Villa and their respite program, as they were the main source of respite for us. In addition, Pam’s mother, Bertha, and her sister, Linda, and her husband, Waverly, were also there and helped us on my occasions. Also thanks go to the LUV group at the West End Assembly of God and to the many caretakers who came into our home to assist us over the years.

If you know someone raising an autistic child, please offer them some assistance.”

January 2, 2007 Posted by | Uncategorized | 5 Comments

No Autism Puzzle Just Conor’s Puzzle Fun

The jigsaw puzzle is the recognized symbol for autism in the US and Canada. Speaking as a parent I have always felt that it is an appropriate symbol. During the holidays though there was no need to talk about autism as a puzzle. Our family enjoyed the holiday period together and none more than Conor shown here putting some jigsaw puzzles together, a diversion he totally enjoys!!!

January 1, 2007 Posted by | Uncategorized | 1 Comment

Vaccines & Autism – Some Sound Advice

There is very little support in the scientific community for the “vaccines cause autism” fears that have grabbed the hearts and minds of many parents. But still the fears are such that many people forgo vaccinating their children. The Lafayette Journal & Courier has offered some sound editorial advice which is well worth reading:

Vaccination: Safer than the alternative

It takes less than a minute to vaccinate your child against the measles, a virus that has infected and killed thousands of children worldwide.

But some parents are unwilling to do so.

Not everyone believes the ample body of validated evidence that supports this Centers for Disease Control and Prevention’s assertion: Vaccinating children against measles, mumps and rubella is the safe and responsible thing to do.

The National Vaccination Information Center is a parent-led organization that aims to prevent vaccine injuries and deaths. Its Web site warns that vaccines can cause their own problems, such as autism, and details cases of children who, the NVIC claims, became violently ill or died after receiving regularly scheduled vaccinations.

Much of its evidence is anecdotal.

But repeated studies confirm the vaccinations are safe for the overwhelming majority of children.

Last week the CDC announced that the largest U.S. measles outbreak in a decade had been traced to a Clinton County girl.

The girl had not received the typical round of childhood immunizations before she traveled to Romania in 2005, federal health officials said. She returned carrying the measles virus, prompting an outbreak that infected 32 people in Indiana and one from Illinois.

Most were children. Only two had been vaccinated against the disease. Three were hospitalized. And one spent time in the intensive care unit before recovering, the CDC said.

The CDC has determined there is no convincing evidence that vaccines, such as the one that prevents measles, cause autism or other related health disorders.

What’s clear is that before vaccines were available, thousands of children became sick — and some died — from the measles virus before the vaccine became available in 1963.

At that time, U.S. health officials documented about 450,000 measles cases and about 450 measles deaths annually. Now, as more and more children routinely receive vaccinations, the number has dramatically dropped.

Science, not fear, should be the deciding factor in how we protect our children.

Refusing to vaccinate them is a dangerous practice that could endanger their lives.

December 27, 2006 Posted by | Uncategorized | Leave a comment

Autism Heroes 2006

2006 has been a momentous year for autism advocacy in North America. The US enacted the Combating Autism Act and in Canada the Scott-Stoffer private member motion calling for a National Autism Strategy passed in the House of Commons with only the Bloc Quebecois putting partisan politics ahead of compassion and refusing to endorse the motion. In no particular order I offer my personal list of Autism Heroes for 2006.

1. Teacher Greg Peters and the students in his political science classes at Leo Hayes High School in Fredericton for the past two years who worked tirelessly and effectively to garner support for a National Autism Strategy in Canada.

2. Andy Scott MP Fredericton NB – Andy Scott has worked for several years on a National Autism Strategy and “wheeled and dealed”, lobbied and persuaded to get it under way in 2006 with private member motion M-172.

3. Peter Stoffer MP Sackville-Eastern Shore NS – Peter Stoffer has also laboured long in support of a National Autism Strategy, seconded M-172 and spoke eloquently in support of the need for a National Autism Strategy for Canada.

4. Shawn Murphy MP – Charlottetown PEI – Shawn Murphy brought his own motion calling for amendments to the Canada Health Act to specify autism and autism treatment. His efforts continued to highlight in Canada the need for a NAS.

5. Autism Society New Brunswick – the struggle for a National Autism Strategy has been long underway. The ASNB has been actively fighting and lobbying for a NAS for several years. Lila Barry, Nancy Blanchette, Jason Oldford, Luigi Rocca, Dawn Bowie, Brian Rimpilainen and many others at ASNB have fought long and hard to advance the cause of autism on the national level.

6. Andrew Kavchak, Sam Yassine, Mike Lewis, Jean Lewis, Shirley Hewko and the families in the Auton and Wynberg cases all of whom have lobbied, sued, advocated and fought for better conditions in the lives of their children and other persons with autism.

7. US Senator Chris Dodd (D) and former Senator Rick Santorum (R) for introducing and championing the Combating Autism Act. Also US President George W. Bush for signing the CAA into law.

8. New Brunswick Premier Shawn Graham for his commitment to provide autism specific training to Teachers’ Aides and Resource Teachers working with autistic students in New Brunswick schools.

9. Former New Brunswick Health Minister Brad Green who reversed a decision to discontinue pediatric tertiary care services for autistic children at the Stan Cassidy Centre for Rehabilitation in Fredericton and committed to the funding of a new team dedicated specifically to the provision of autism services at the Centre. Director Ron Harris at the Stan Cassidy who provided well informed leadership to those who fought for the commitment to the new autism team and who is overseeing the development of the team.

10. Clinical Psychologist and Professor Emeritus (Psychology) Paul McDonnell who received special recognition from the Autism Society New Brunswick this year for his outstanding contributions to the cause of autism in New Brunswick. Paul works with autistic children in his practice and has been a primary source of knowledge, confidence and inspiration for parents advocating for better lives for their children with autism.

11. Autistic children and adults who have made our lives better in 2006 and all years and provide joy and strength to parents in our daily lives, including my son, Conor .

December 27, 2006 Posted by | Uncategorized | 1 Comment

Conor’s Christmas Card

Conor’s Christmas Card

Merry Christmas!!

December 24, 2006 Posted by | Uncategorized | 1 Comment