Autism Reality

Autism Research Ethics – Is It Ethical to Deny ABA to Autistic Infants for Research Purposes?

The AP is reporting several new autism research projects aimed at studying early clues of autism and other disorders. One such study mentioned is by Dr. Stanley Greenspan which, according to the AP report, will involve two groups of infants – One group will receive intensive behavior training, the other will not; both will be compared through age 5. But is it ethical to deny ABA intervention to infants who are diagnosed or suspected to have an Autism Spectrum Disorder for research purposes?

An opinion peace in the Medical Journal of Australia Children with autism deserve evidence-based intervention The evidence for behavioural therapy MJA Vol 178 5 May 2003 424, Jennifer J Couper Head, Endocrinology and Diabetes Centre, Women’s and Children’s Hospital, North Adelaide, and University of Adelaide, SA and Amanda J Sampson Ultrasonologist Royal Women’s Hospital, Carlton, VIC reviewed the impressive body of research that existed in 2003 in support of the effectiveness of ABA as an autism treatment. The authors noted “that while ineffective therapies may be harmless, they waste parents’ money and the child’s valuable therapy time. Furthermore, the delay in implementing effective treatment may compromise the child’s outcome.“.

Since the MJA editorial piece there have been more studies confirming the efficacy of ABA as an autism intervention or treatment. How can a study which denies ABA treatment to autistic infants during the critical 2-5 year age period meet ethical standards in light of ABA’s demonstrated evidence based effectiveness in treating autism? As Couper and Sampson noted ineffective therapies waste parents’ money and valuable therapy time. Hopefully, at the very least the parents of infants in the control group, the infants not receiving ABA, have been informed that there are literally hundreds of studies demonstrating the effectiveness of ABA as an autism intervention. Hopefully they will have been told before agreeing to deny ABA treatment to their children that state, academic and professional bodies around the world have consistently concluded that ABA stands alone as the most solidly supported, evidence based treatment for autism to this day.


RESEARCH ON AUTISM IN INFANTS

Associated Press
Article Launched: 05/21/2007 01:31:53 AM PDT

AUTISM AND INFANTS

Research on identifying early clues of autism and other disorders and testing treatments is booming. Here are some of the doctors and researchers involved:

Dr. Fred Volkmar at Yale University is studying potential ways to diagnose autism in the first months of life, including whether looking at objects rather than people is a sign. “I think we’re on the verge of being able to do a much better job” of diagnosing autism in infancy, Volkmar said.

Researcher Stephen Porges at the University of Illinois at Chicago is starting a five-year study of whether excessive crying past 6 months of age might be an early sign of autism, attention deficit or other behavioral problems.

Dr. Stanley Greenspan, a psychiatry professor at George Washington University, is launching a multimillion-dollar study involving parents and babies at risk for autism or attention deficit disorder. One group will receive intensive behavior training, the other will not; both will be compared through age 5.

http://www.mercurynews.com/news/ci_5946767

May 21, 2007 Posted by | Amanda J Sampson, Applied Behavior Analysis, autism disorder, autism ethics, autism research, Dr. Stanley Greenspan, evidence based interventions, Jennifer J Couper | 3 Comments

New Study Confirms EIBI Results in IQ Gains for Autistic Children


Yet another study has demonstrated the effectiveness of intensive early behavioural internvetion as both an educational AND a healh care intervention for autistic children, with signficant IQ gains for young autistic children who received intensive behavioural intervention. This study will make no difference to the mindsets of the anti-ABA crowd which is as vehement in their opposition to ABA as the mercury-vaccine causes autism crowd are in their opposition to “Big Pharma”. For parents of newly diagnosed autistic children though it will be important information for them to be aware of as they decide how to respond to their children’s autism.

Date: May 6, 2007

Science Daily — Intensive intervention given to toddlers with autism as young as three years old can significantly raise IQ levels, potentially allowing them to benefit from mainstream education, new research has revealed.

Researchers at the University of Southampton, led by Professor Bob Remington of the School of Psychology and Professor Richard Hastings (now at Bangor University), undertook a study into the impact of two years of Early Intensive Behavioural Intervention (EIBI).

The results of the Southampton Childhood Autism programme (SCAmP) show that a group of children who received two years of intensive tutoring – or early intervention – had higher IQs, more advanced language and better daily living skills than similar children receiving standard educational provision.

IQ increased for two thirds of the children receiving the early intervention and ‘very substantially’ for more than a quarter of them. For example one child moved from an IQ of 30 up to 70; another from an IQ of 72 to 115. Most of the population of the UK has an IQ of between 85 and 115.

In what was a ‘tough test’ into whether EIBI could prove beneficial, specially trained staff and parents taught children with autism a wide range of skills in their own homes for 25 hours a week. Teaching was individualised to take full advantage of each child’s abilities and focus on areas of need; each lesson was carefully broken down into easy steps and children received constant praise and other rewards for their successes.

‘This form of teaching can, in many cases, lead to major change and enhance the life chances of children with autism,’ said Professor Remington. ‘In practice, the positive changes we see in IQ, language and daily living skills can make a real difference to the future lives of children with autism.

‘But those embarking on EIBI should prepare for some hard work. Twenty five hours of home therapy a week is a big commitment for children and parents alike. Before the research began we wondered if such intensive work would increase the emotional and psychological demands of childrearing, as teaching basic skills needs a lot of dedication and patience and family organisation has to adapt to the ever-present home tutors.

‘In fact most parents took this in their stride. The reasons are clear. It’s harder to be helpless than it is to get involved in teaching, and in most cases our parents saw rapid improvements in their children’s skills and behaviour.’

An estimated 535,000 people in the UK are living with a condition on the autism spectrum.

The SCAmP team is embarking on a follow-up study with those children who took part in the research to establish how long-lasting the effects of the treatment are and how benefits can be extended.

Note: This story has been adapted from a news release issued by University Of Southampton.

http://www.sciencedaily.com/releases/2007/05/070506163608.htm

May 6, 2007 Posted by | aba, autism disorder, autism research, behavioural intervention, eibi, IQ | 4 Comments

Athletes Against Autism


“With the diagnosis of autism comes shock, but then comes the nightmare of trying to figure where to turn. … You can just give up and quit, but then quitting will only get easier,”

– Olie Kolzig

The Montreal Gazette is carrying an informative article on Olie Kolzig, goaltender with the NHL Washington Capitals, and founder of Athletes Against Autism. Mr. Kolzig was sporting the blue puzzle piece pin of Autism Speaks which is a world leader in creating autism awareness and generating funds for research and treatment.

“A developmental disorder of the central nervous system, autism for Kolzig is more than a unique lapel pin. It is the life mission for the Capitals goaltender, its reminders as near as his own 6-year-old son, Carson.

The boy’s affliction has changed the life of Kolzig and his wife, Christin, also parents to Kendall, 4, and Ashlyn, 3. But the NHL all-star has chosen to look beyond his own home to also make a difference for thousands of children and adults he’ll never know.

The autistic are affected, often severely, in their ability to communicate or interact socially with others. Children are ridiculed or cruelly excluded by their peers, making adolescence a horribly difficult time.

Kolzig is putting his fame to excellent use, having co-founded Athletes Against Autism (AAA), under the umbrella of Cure Autism Now (CAN). He is joined by friends and fellow NHLers Byron Dafoe and Scott Mellanby, also fathers of autistic children.

The group’s goal, leaning on the celebrity of its three leaders and the support of many others, is to raise awareness and money for autism research, treatment and education programs.

With a strong body of famous athletes and plenty of resolve, AAA continues to grow, speaking with a clear, passionate voice that’s increasingly being heard by decision-makers.”

The Athletes Against Autism website can be found at:

http://www.athletesagainstautism.org/site/c.muL1J9MMKpH/b.925197/k.CC4E/Home.htm

March 26, 2007 Posted by | Athletes Against Autism, autism awareness, autism disorder, autism research, Olie Kolzig | Leave a comment

The Autism Knowledge Revolution

We are living in a revolutionary era. The hardware era is giving away to the software age, and as a result, the economic and social landscape of the world is undergoing seismic changes. The Knowledge Revolution, Noel M. Tichy, Ph.D., 2002

The world is awakening now to another knowledge based revolution – the revolutionary explosion in our knowledge of autism disorders. Like other revolutions the Autism Knowledge Revolution also promises to be seismic in its impact. Recent autism reports have brought news of the Autism Genome Project with studies providing new information about the genetic bases of autism disorders. Gene mutations are being identified as the cause of some instances of autism. A new study suggests that the amygdala, a part of the brain associated with emotional learning and fear, shrinks in people with autism, as a result of chronic stress caused by social fear in childhood.

Like other revolutions there are those who fear the onset of the Autism Knowledge Revolution and its impact. They stand on principle and cloak their fears in the mantle of human rights. Fear mongering is already spreading in relation to genetic research in autism with wild speculation about what the purveyors of such fear describe as a eugenics program similar to some of history’s worst atrocities. Others express a more practical fear; that our rapidly increasing knowledge in the genetics of autism will be of no value to older autistic children and adults. As the father of a severely autistic 11 year old boy I understand that particular fear but I do not believe that genetic research will yield only clues to prevention of autism occurrence or education of the very young. It is quite possible that our knowledge of autism disorders will assist in understanding how autism works in all individuals with an autism disorder and that may lead to new ways of understanding autistic persons and how to enhance their lives.

Hopefully one result of the Autism Knowledge Revolution will be the end of some of the needless hostility surrounding the vaccine/mercury autism debate. The believers in the Mercury Theory have clung to their theory with almost no scientific support and have resorted in desperation to belief in a world wide conspiracy involving “big pharma”, big government and a “bought and paid for” world science community doing the bidding of Big Pharma. Some opponents of the Mercury Theory have been just as virulent and would censor any reference to autism as a disorder, disease or medical condition by any term. More research, more knowledge, may well show some environmental factors in the onset of autism, mercury based or otherwise. Or it may disprove conclusively any such connections.

The future holds promise but never provides promises or guarantees. Some of the research currently under way may lead to dead ends; part of the scientific process of elimination. But the increase in knowledge of autism will undoubtedly increase our uderstanding of autism. Surely a good thing in and of itself.

The autism knowledge revolution does provide hope, hope of a cure for those who seek it for themselves or their loved ones. It is a hope based not on resignation or “acceptance of autism”. It is a hope based on solid scientific research as most of our advances of the last 300 years have been. There are no limits at this time on where this knowledge might lead. While concern that it will not assist older autistic persons is understandable it does not automatically follow that such research will be of no benefit to them and all autistic persons, regardless of age.

Those of us who are not ourselves scientists, and do not imagine ourselves to be scientists, can still assist by involvement in organizations, such as Autism Speaks, and CAIRN (Canadian Association Intervention Research Network), which have been such powerful positive forces in the advancement of autism research.

We can all lobby, create public awareness and raise funds.

We can all join the Autism Knowledge Revolution.

March 18, 2007 Posted by | autism, Autism Genome Project, Autism Knowledge Revolution, autism research, autism speaks, CAIRN, mercury | Leave a 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