Autism Reality

Conor’s St. Patrick’s Day Snow Fun




St. Patrick’s Day often brings a snow storm in our parts. This year was no exception with snow turning into freezing rain this morning. Conor wasn’t a bit fazed by the weather though and didn’t hesitate to head outdoors for some more snow fun.

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March 17, 2007 Posted by | autism, Conor, funding, Saint Patrick's Day, snow | Leave a comment

Inclusion Dogma Seductive but Harmful for Some Autistic Students


UK MP Lee Scott has criticized the UK government for placing politically correct inclusion dogma ahead of the needs of autistic school children. While inclusion sounds good it hasn’t always helped some autistic school children or their classmates.

“Autism needs debated at Westminster

By Sam Adams

A REDBRIDGE MP has criticised the Government for putting political correctness’ before the needs of autistic children.

Lee Scott, MP for Ilford North, secured a special parliamentary debate at Westminster last week, calling for the creation of more special schools, three of which currently exist in Redbridge.

The MP believes the Government’s focus on educational inclusiveness’ has left many youngsters with the condition struggling in mainstream schools when they would develop more effectively in special schools.

He said: “The dogmatic approach of placing all pupils with special needs in mainstream schools has frequently benefited neither them or the children whom they are educated alongside.

“Many of us have at some time been seduced by the theory of inclusion which seems so nice and reasonable and politically correct, but there is clear evidence that it does not work for every autistic child.“

The MP criticised the Government for closing down some special schools, and claimed many mainstream schools are unable to provide the learning support needed by autistic youngsters.

He said: “We have seen seven per cent of special schools closed down since 1997 and in a recent report 44 per cent of teachers in local comprehensives admitted they weren’t confident in teaching kids with autism.”

The MP praised the work of the borough’s current special schools, Hatton School in Clayhall, Newbridge School in Ilford and New Rush Hall School, Hainault, but said provision needed to be expanded further.

Replying for the Government, the Minister for Higher Education and Lifelong Learning Bill Rammell said: “I genuinely welcome this debate and the efforts that the hon. Member for Ilford North has made to bring these important issues to the public’s attention.”

http://tinyurl.com/2zpyse

March 16, 2007 Posted by | autism, autism education, autistic, inclusion, learning, Lee Scott, political correctness, schools, special needs | 1 Comment

Autism Speaks Is At It Again

Autism Speaks is at it again. Autism Speaks has been talking the talk, raising awareness for autism, with a variety of projects, including the reality based video Autism Every Day, which examines some of the realities of severe autism, and raising funds for autism research. But Autism Speaks is also walking the walk to raise autism awareness and funds for autism research at walks across the US including March 31 walks in West Texas and Oklahoma City, April walks in LA, Broward County, Nebraska and Allentown and the annual Long Island Autism Walk in October, purportedly the largest autism walk in the world, with 20,000 participants in 2006, raising $2,000,000 for quality, peer-reviewed autism research. The complete schedule of Autism Speaks Walk Now for Autism walks can be found at:

http://www.walknowforautism.org/site/c.grKPI2PCImE/b.2485123/k.BD69/Home.htm

March 15, 2007 Posted by | autism, autism awareness, autism every day, autism research, autism speaks, walk now for autism | 2 Comments

New Brunswick Budget Supports Students with Autism

Students with autism in New Brunswick are being backed by the Shawn Graham Liberal government which has put money in the budget to provide autism specific training to teacher assistants and resource teachers. There was some confusion generated by an earlier newspaper story on the subject but Education Minister Lamrock subsequently confirmed the Graham government’s election campaign promise to provide autism specific training to 100 teacher assistants and resource teachers each year for the next 4 years at the UNB-CEL Autism Intervention Training program. And now the money to start that process has been set aside in Premier Graham’s first budget as announced by Finance Minister Boudreau.

A total of $1.2 million will go to provide training to teaching assistants and methods-and-resource teachers in applied behavioural analysis in support of students with autism, said Boudreau.

http://www.canadaeast.com/ce2/docroot/article.php?articleID=113390

New Brunswick is a small province and not the richest in Canada. Today though, Premier Shawn Graham and his government have put New Brunswick in the forefront in Canada as a leader in educating autistic students; they have shown they are serious about providing New Brunswick’s students with autism with a real education.

Now THAT is inclusion.

March 15, 2007 Posted by | aba, autism, autism education, budget, resource teachers, teacher assistants, UNB-CEL | Leave a comment

A Mother Describes Some Unpleasant Autism Realities

CAUTION: The attached article from the Daily Record in the UK describes in graphic detail some of the realities of living with, loving, caring for and actually raising a severely autistic child. The realities described in the article are not the sweetness and light version of autism popular on many internet blog sites. They are realities similar to those described by the parents of the Autism Every Day video who were vilified because they described them publicly. I love my son with all my heart but I can confirm as the father of a severely autistic child that I have experienced and seen much of what is described in this article. For those who are offended by unpleasant truths about autism, skip this article.

http://tinyurl.com/25xz6p

13 March 2007

DAILY HELL OF LOVING A LITTLE BOY WITH AUTISM

He bites, kicks and punches. He has torn down the curtains, broken a tumble dryer, flooded the house, binned all his clothes and wrecked doors and a bed. He slashed a sofa and ate the foam. Ian is just SIX
By Natalie Walker

DESPERATE mum Linda McIntyre told yesterday how she feels she has been abandoned with her acutely autistic son.

Single mum Linda, 42, is near breaking point trying to cope with six-year-old Ian, who suffers almost constant violent mood swings because of his condition.

She says the lack of support – coupled with cruel comments from strangers who do not know about Ian’s condition – has left her at the end of her tether.

Ian was diagnosed as autistic at 18 months but Linda says social workers and education chiefs have turned their backs on him.

Since he started school last August, she has been asked to take him home 25 times and is now caring for him round the clock.

Linda, from Balornock, Glasgow, said: “It’s one thing after another and I don’t know how much more I can take. I keep thinking of that mum who killed herself and her autistic son by jumping off a bridge. I know why she did it.”

Mum-of-five Alison Davies, 40, of Stockport, Cheshire, leapt to her death with her son Ryan, 12, from the Humber Bridge last year.

Her friends said she had been let down by social services.

Linda said last night: “I just don’t want to get to that stage. But without some more help and support I only fear the worst.

“And it would help if people who see mums and dads with kids who are playing up would think twice before judging.

“It is likely that child has a disability like autism, so they should think before they say anything.”

Mum-of-two Linda says she has no social life and it is more than a year since she had a night out. She added: “I am at breaking point and I feel like I have nowhere to turn.

“I just wish the people who are so quick to judge me and Ian would spend a day in our shoes.

“They’d never cope. But it would let them realise that Ian is not a bad boy, he is ill.

“That is why he kicks and bites and screams. He can’t help it.

“If I could wave a magic wand and make it all go away, I would. But I can’t.

“I love my son to bits and will fight to defend and protect him like any mother would.”

In recent weeks, life has become even worse for Linda, whose daughter Melanie, 20, lives in Preston, Lancashire, with her boyfriend.

She was called to Ian’s special needs school to be told he had been playing with a guillotine.

Since then, she has refused to let Ian go back to Glasgow’s Gadburn Primary School as she fears for his safety.

She said: “Every day, there are new challenges to face and every day is like climbing a huge mountain.

“Ian has no sense of fear and you have to keep an eye on him all the time. He’d jump out of a window or cut himself or throw himself off something for fun. He has no idea it could kill him.”

Ian has also started copying behaviour he has seen at school, biting, kicking and punching people, including Linda and her disabled uncle.

He has torn down two sets of curtains, broken the door of the tumble-dryer, flooded the kitchen and bathroom floors and thrown almost all his clothes in the bin.

The six-year-old has also broken a bed, bashed in the living room door, slashed open a sofa and tried to eat the foam from it and covered sheets and carpets with make-up.

His mum has had to tie ropes to all the doors and windows of their three-bedroomed home to stop him hurting himself.

On top of this, she has to change his clothes up to nine times a day because he is incontinent. Sometimes, he goes to the toilet on the floor.

And Linda can’t remember the last time she had a proper night’s rest as she can spend up to five hours trying to get Ian to go to sleep.

She said: “Things are now so bad that there are days when I do think the worst. I used to be able to go out with Ian but not since he started school and picked up bad habits.

“I don’t drive, so we have to get the bus. But the last time we were on one, Ian started pulling people’s hair.

“I can’t even go out shopping with him because he hits total strangers.

“The other day, he punched an older lady in the stomach. Her husband went absolutely crazy at me.

“And when we were in the supermarket the other day, Ian started banging his head off the floor and started this high-pitched scream.

“Within seconds, there was a huge crowd around us. Someone chirped out that I was a terrible mum and should not let my son do this.

“It is only when I screamed out that he had autism that they stopped staring and walked off, feeling guilty. This happens all the time we are out.”

In the last four years, Linda has only had two days of respite care offered to her, when a couple took Ian to their home to give her a break.

She has been begging for meetings with social work and education officers since last December to try to get more help. And she is furious his school keeps sending him home.

Social workers have also refused to give her cash to repair broken locks and her tumble-dryer.

Linda said: “They say they are not essentials. But they should try living with an incontinent child.”

The mum noticed Ian’s behaviour changing since his MMR jab, she says.

She added: “Until then, I had a loving wee boy. And then it was like one day he went into his own world. He wouldn’t hug me or speak or even look at me. It was heart-breaking.

“To this date, I have never been able to prove it was the MMR but I am convinced it is to blame.”

The National Autistic Society say they get thousands of calls a year from carers suffering from depression and feeling the strain of looking after someone with autism.

A study by the charity discovered only 15 per cent of parents received any support from social services.

And it highlighted how a third of families waited more than a year before their children received support at school.

There are about 45,000 autistic children living in Scotland and experts believe the condition is becoming more common, affecting 50 in every 10,000 children compared with five in 10,000 some 20 years ago.

A spokeswoman for Glasgow City Council said: “Ian’s school has been working closely with Mrs McIntyre over the past few months to address Ian’s additional support needs.

“A multi-agency meeting has been arranged for next Tuesday which will give further consideration to the supports required in both the school and home setting.”

The National Autistic Society helpline is on 0845 070 4004.

March 14, 2007 Posted by | autism, autism disorder, autism every day | 3 Comments

Conor Adds It All Up – On the Walls


Conor loves his numbers and loves to add. In the pictures above he decided to exercise his adding pleasure on the walls of his room and the upstairs bathroom! His Mom, Heather, says that we will be getting a white board for his room today!

March 11, 2007 Posted by | autism, autism education, Conor, math, recreation | Leave a comment

Evidence Based Autism Interventions

The expression “evidence based” is often encountered in discussion of autism treatments or interventions. Parents, government officials, professionals and researchers will use the expression when discussing the effectiveness of various interventions in treating or curing autism. A well known article in the Journal of the Australian Medical Association, linked on the sidebar of this blog site, is entitled “Autistic Children Deserve Evidence Based Intervention“. But what does the expression “evidence based” mean and which autism interventions, if any, meet the evidence based standard?

It is important for parents and political decision makers trying to determine what interventions to provide autistic persons to understand the concept of “evidence based” interventions. There have been many quack autism interventions offered both by self promoters and wishful thinkers. Such interventions waste valuable development time of autistic children, waste family and government funds, and in some cases, actually cause direct harm. Unfortunately there have also been those who are opposed to curing or treating autistic persons, those who wish to promote alternative interventions, or who wish to avoid expending public resources to provide treatment, who attack Applied Behavior Analysis (ABA) despite the quality and quantity of research supporting the efficacy of ABA as a health and education intervention for autistic children.

CAIRN, the Canadian Autism Intervention Network, defines “evidence based”:

By evidence-based, we mean the best available information based on scientifically rigorous research that produces consistent findings no matter how many times the study is repeated.

CAIRN also notes that there are substantial differences in the quality of evidence. It lists on its web site the characteristics of studies that provide high quality evidence.

Systematic reviews
A systematic review uses a clear and systematic method of finding and appraising relevant, high quality research studies whose combined results are used to answer a pre-determined question about treatment.

The strength of the systematic review is in its ability to combine data from studies of different populations in different settings to show if a treatment is widely applicable. By pooling data from patients in a number of studies, thus increasing the sample size, a systematic review can increase the reliability of the findings, showing whether a treatment actually works or may be useless or even harmful.

Randomized controlled trials (RCTs)
In RCTs, research subjects are randomly placed in one of two groups. One group receives the intervention that the study has been designed to measure; the other group (known as the control group) does not. The control group may receive a placebo, no treatment, or another therapy. Study participants (and ideally, the researchers) do not know to which group they have been assigned.

RCTs are considered the second strongest level of evidence for the effectiveness of a treatment. The strength of the RCT is that it helps ensure that the two groups under study do not have any important differences between them that could influence whether or not the treatment they receive works.

Controlled clinical trials (CCTs)
In a controlled clinical trial, one group receives a therapy and the other (control group) does not. As in RCTs, the control group may receive a placebo, no treatment, or another therapy. Unlike RCTs, however, the participants are not randomly assigned to each group.

With some populations, or in some situations, it is not possible to randomly assign participants to one group or another. CCTs still use a comparison group and efforts are made to ensure that the two groups do not have serious differences between them that could influence the results of the study.

Multiple and single case studies
In multiple and single case studies, subjects are tested to establish a baseline. They are then given an intervention, after which they are re-tested to determine what change, if any, has occurred.

Sometimes, especially when there is great variability in a condition, or small numbers of people with a condition, it is not possible to conduct research with two groups. In multiple and single case studies, the participants are used as their own comparison when they are given alternating treatments, or a treatment and then no treatment. Although not providing the same strength of evidence as an RCT or CCT, when done rigorously, these studies can yield valuable information about treatments.

In its February 2000 (Rev.) Autism Task Force Report the Maine Administrators of Services for Children with Disabilities (MADSEC) reported the results of its thorough review of the professional literature on educational interventions for autism. The MADSEC Task Force also interviewed leading practicioners of various autism interventions. It concluded that only one intervention met the standard of being an evidence based effective autism intervention – ABA.

• Substantiated as effective based upon the scope and quality of research:
Applied behavior analysis. In addition, applied behavior analysis’ evaluative procedures are effective not only with behaviorally-based interventions, but also for the systematic evaluation of the efficacy of any intervention intended to affect individual learning and behavior. ABA’s emphasis on functional assessment and positive behavioral support will help meet heightened standards of IDEA ‘97. Its emphasis on measurable goals and reliable data collection will substantiate the child’s progress in the event of due process.

……

Conclusions
There is a wealth of validated and peer-reviewed studies supporting the efficacy of ABA methods to improve and sustain socially significant behaviors in every domain, in individuals with autism. Importantly, results reported include “meaningful” outcomes such as increased social skills, communication skills academic performance, and overall cognitive functioning. These reflect clinically-significant quality of life improvements. While studies varied as to the magnitude of gains, all have demonstrated long term retention of gains made. Other major contributions of ABA to the education and treatment of individuals with autism include:

• a large number of empirically-based systematic instruction methods that lead to the
acquisition of skills, and to the decrease/elimination of aberrant behaviors;
• a technology for systematically evaluating the efficacy of interventions intended to affect individual learning and behavior; and
• substantial cost/benefit.
Over 30 years of rigorous research and peer review of applied behavior analysis’ effectiveness for individuals with autism demonstrate ABA has been objectively substantiated as effective based upon the scope and quality of science.

Since the publication of the MADSEC Autism Task Force Report there have been more studies confirming ABA as the most effective autism intervention. In “A comparison of intensive behavior analytic and eclectic treatments for young children with autism” published in Research in Developmental Disabilities, 26, (2005), pp. 359-383, the authors, Jane S. Howard, Coleen R. Sparkman, Howard G. Cohen, Gina Green, Harold Stanislaw reported the results of a non randomized comparison trial with three intervention groups of children with autism spectrum disorders. 29 children received one-on-one intensive behavioral therapy for 25 to 40 hours per week (IBT group); 16 received eclectic therapy (multiple treatment methods) with a teacher to student ratio of 1:1 or 1:2 for 30 hours per week (AP group); and 16 received a non-intensive, eclectic, small group, public early intervention program for 15 hours per week (GP group.) The study’s authors reported that 14 months after initiation of the interventions, the intensive behavioral therapy group scored significantly higher on all measures, with the exception of motor skills, where there was no difference among groups.

Alan Harchik, senior Vice President with the May Institute, has written an excellent article on the topic of evidence based interventions. Mr. Harchik describes evidence based standards and cautions against the use of the many treatments and interventions for autism that do not meet that standard including sensory integration, facilitated communication, auditory integration, chelation and hyperbaric oxygen treatments.

The term evidence-based practice is frequently used in the fields of science and medicine. It refers to procedures that have been tested using scientific research methods and shown to be most likely to produce positive results. This means that objective studies have been conducted using reliable data collection methods, consistent implementation of the treatments and the careful control of the research conditions.

The research findings are then published in professional journals after review by a panel of experts in the field.

Mr. Harchik, like the MADSEC Autism Task Force Report, concludes that ABA is the intervention with the most evidence supporting its effectiveness.

For children with autism, the procedures that have the most evidence supporting their effectiveness are those that use applied behavior analysis. …. applied behavior analysis methods include an assessment of the factors that are impeding learning or maintaining behavior problems, using positive rewards, teaching in small steps, using prompts and guidance, and collecting data to monitor progress.

The studies and expertise which provide evidence of the efficacy of ABA in autism intervention have not persuaded some who oppose the use of ABA interventions with autistic persons. Some will continue to insist on an unattainable standard being met before they will acknowledge the efficacy of ABA. For others though, for parents, professionals and government decision makers seeking to help autistic children now ABA, their only agenda is to find out what works, what really works, based on the best available evidence. To date, ABA is the only intervention for which claims of efficacy meet the high quality evidence based standard. That is why parents and sincere autism advocates try to obtain passage of legislation in Canada and the United States to ensure the availability of ABA treatment for autistic children.

March 10, 2007 Posted by | applied behavioral analysis, autism, autism interventions, evidence based, Harchik, MADSEC, May Institute | 6 Comments

Conor Relaxes at the Second Cup



Sunday morning for Conor often means hanging out with Dad and relaxing at the Second Cup in Kings Place, Fredericton. They have always been very kind to Conor – even when he has a melt down or tantrum moment. We usually grab a window table where Conor can watch the cars and buses when he is not examining the many sights inside the Second Cup with its colorful mugs, plants, wall hangings and other decorations. The music is usually very relaxing and Dad gets to have a coffee “fix” while hanging out with my buddy.

March 4, 2007 Posted by | autism, coffee, Conor, Fredericton, Kings Place, Second Cup | 1 Comment

The Cat in the Hat is 50 Today



The Cat in the Hat is 50 today and its brilliant creator Theodor Geisel, Dr. Seuss, would be 103 tomorrow, were he still with us. Conor, like so many other children, loves his Dr. Seuss books. Happy Birthday Cat! Thank you Dr. Seuss.

March 1, 2007 Posted by | autism, Conor, Dr. Seuss, learning, reading, The Cat in the Hat | 2 Comments

Canadian Breakthrough Offers Hope on Autism

The Globe and Mail headline says it all. Hope.

………………………………………………………………………………………………………………………………………………

Canadian breakthrough offers hope on autism

Project makes possible DNA test to identify children most likely at risk to condition

From Monday’s Globe and Mail

A massive international effort led by Canadian scientists has homed in on the genes behind autism – a breakthrough that could revolutionize how the mysterious and surprisingly common condition is both detected and treated.

Touting it as the most significant advance in the field in 30 years, researchers say the landmark project has put within reach a DNA test to identify children with autism early enough to counter the condition’s worst effects.

“I don’t think it’s inconceivable that we’re going to be able to prevent autism down the road,” said study leader Peter Szatmari, director of the Offord Centre for Child Studies at McMaster Children’s Hospital in Hamilton. “The clinical implications of this discovery are unprecedented.”

Doctors currently rely on psychological tests to diagnose autism spectrum disorders in children at age 2 or 3. But a DNA test could identify those affected as babies, or perhaps even before they are born.

The findings, based on the largest autism DNA collection ever assembled, could also allow parents who have children with autism to learn through genetic screening their chances of having another affected child.

“If you know ahead [of time] of your predisposition to autism, you can make an informed decision,” said Marie Jolicoeur, a Burlington, Ont., mother who has two sons with autism disorders and whose family contributed DNA to the project.

Using new genome scanning tools, researchers have found that several different autism-related genes can play a role in different families. This helps to explain why no two children – not even identical twins – have identical symptoms.

The researchers have pinpointed at least five areas of the genome that harbour genes linked to autism susceptibility, including those crucial for brain function. They have also found a genetic mutation tied to the disorder in girls – who are four times less likely than boys to develop autism disorders.

The work has also highlighted how autism can spring from genetic quirks not seen in either parent – suggesting that a genetic glitch has randomly emerged in the sperm or egg cells of the father or mother prior to conception.

Co-author Steve Scherer, senior scientist of genetics and genomic biology at Toronto’s Hospital for Sick Children, said, “It may be that 5 to 10 per cent of autism cases are arising from these de novo [new] mutations.”

The research, released yesterday in an advance online publication of the journal Nature Genetics, is the first part of a two-phase study run by the Autism Genome Project. It involves more than 137 researchers from 50 academic institutions in eight countries and the study of nearly 8,000 people from 1,600 families who have at least two members diagnosed with an ASD. ………

http://tinyurl.com/3cjfmy

February 19, 2007 Posted by | autism, autism genome, autism spectrum disorder, research | 3 Comments