ABA Effectiveness and Autism's On Off Switches

The latest explosion in the Autism Knowledge Revolution is the much ballyhoo'd (Scientific American, Washington Post, Times Online, TIME etc.) study in the current issue of Science. The fuss and the hoopla is well deserved. The results suggest possible cures, appear to explain the effectiveness of ABA as an early learning intervention, and demonstrate that both genes and environment are probably involved in causing autism disorders. And as stated in the abstract the study appears to have identified a mechanism common to seemingly diverse autism mutations:

"The largest deletions implicated genes, including PCDH10 (protocadherin 10) and DIA1 (deleted in autism1, or c3orf58), whose level of expression changes in response to neuronal activity, a marker of genes involved in synaptic changes that underlie learning. A subset of genes, including NHE9 (Na⁺/H⁺ exchanger 9), showed additional potential mutations in patients with unrelated parents. Our findings highlight the utility of "homozygosity mapping" in heterogeneous disorders like autism but also suggest that defective regulation of gene expression after neural activity may be a mechanism common to seemingly diverse autism mutations."

The study of 88 families in which one or more children had been diagnosed with autism, and the parents of each autistic child were cousins in the Middle East found that some genes involved in early learning are turned off but may be capable of being turned back on, Scientific American reports that:

"We're showing, on the one hand, that autism seems to have a large genetic component," says study co-author Christopher Walsh, chief of genetics at Children's Hospital. "But, the genes that are involved are actually those that are involved in responding to the environment and learning."

The findings, Walsh says, reinforces the importance of early diagnosis of autism and intervention, particularly behavioral therapy and learning in enriched environments through repeated activities. Performing these sorts of tasks may help strengthen cellular connections, compensating for the malfunctioning genes."

This is very bad news for anti-ABA advocates like Michelle Dawson and Dr. Laurent Mottron and the Neurodiversity ideologues at the "Autism" Hub. This study clearly supports the effectiveness of ABA as an early learning intervention as stated in Scientific American by study co-author Christopher Walsh, chief of genetics at Children's Hospital Boston:

"Our work reinforces the importance of early intervention and behavioral therapy," he says. "The more we understand about genetics the more we understand how important the environment is."

autism

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Early Early Screening Urged for Autism by US Pediatricians

The American Academy of Pediatrics will be recommending that all children be screened twice for autism by age 2 to allow maximum benefit from early intervention. The AAP points out early indicators of autism such as 4-month-olds not smiling at the sound of Mom or Dad's voice, babies who don't babble at 9 months, 1-year-olds who don't point to toys, or the loss of language or social skills at any age.

Conor was diagnosed 9 1/2 years ago at age 2. At that time, in New Brunswick, age 2 was an early diagnosis age for autism and we had no idea what autism was until Conor was diagnosed, initially with PDD-NOS, and as the severity of his autism became more obvious, with Autism Disorder. The early indicators for us were his failure to smile or show any response to peek a boo and other playful interaction. He had persistent fascination with sand, sifting it for lengthy periods of time but we did not find that alarming. His failure to develop any language skills by 12-14 months (other than saying the word "circle" on one occasion) was our most serious concern and we took him to our family doctor.

Our family doctor responded with the "boys develop language later" answer but we were not convinced. Our family doctor was one of those sometimes rare professionals who actually listened to our concerns though and he referred us to a pediatrician with some background in developmental disorders and after a series of tests Conor was diagnosed.

Unfortunately for Conor ABA intervention was not readily available in New Brunswick at that time. Most of the local Autism Society efforts were half day workshops on an eclectic mix of autism related topics. An activist group of parents emerged in response to the void in autism services in New Brunswick and we fought hard to get early intervention funded by the province, too late for our own children. But the benefit of those efforts will be felt by newly diagnosed autistic children in New Brunswick and that is a good thing - a very good thing.

The earlier an autism diagnosis is received, the better. And in New Brunswick today, although things are far from perfect, evidence based intervention is available for those parents who choose it for their child - if they get an early diagnosis.

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Autism Speaks, Autism Leadership and Board of Education of City of New York v. Tom F., 06-637

The autism communities in the US and Canada have suffered from a common problem - a lack of strong leadership, focused on the important priorities of raising awareness, generating funds for research and advocating for effective health and education treatments for autistic persons. That scenario began to change for the better though with the emergence of Autism Speaks under the leadership of Bob and Suzanne Wright.

The Wrights' media savvy, contacts and organizational skills have worked wonders at raising autism awareness, real awareness of autism as what it is a debilitating neurological disorder. From the very best stand up comics and TV stars to NASCAR racers the Autism Speaks team have put autism into the public consciousness in a very big way. They have generated funds for important autism research. And they have participated in a significant United States Supreme Court decision Board of Education of City of New York v. Tom F., 06-637.

As set out in the Autism Speaks Press Release the New York City Department of Education had argued that even if the child's IEP is demonstrably inappropriate, a parent should not have standing to challenge their child's IEP unless the parent has first "tried out" the school district's IEP.

Autism Speaks filed an amicus brief in the case focusing on the critical nature of early intervention for children with autism which explained why parents of children with autism should not be forced to "try out" demonstrably inappropriate and ineffective IEP programs during what may well be a relatively narrow window of opportunity. The Autism Speaks press release indicates that Justice Ruth Bader Ginsburg quoted from that brief during oral argument.

Here in Canada our education system operates under different legal and constitutional considerations then in the United States. And American decisions have no binding effect in Canadian courts. They can still be influential, however, directly in the court systems as non binding precedents, or indirectly, by influencing educators who take American developments under consideration. Hopefully this ruling by the US Supreme Court will have some positive influence on Canadian educators and will dissuade them from pursuing the NY City Board of Education approach.

In any event, a big Thank You to Autism Speaks for its excellent leadership in addressing the real needs of autistic children.

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Autism Health Insurance - Texas Governor Perry Signs Autism Insurance BIll

"Great things can be achieved, with early intervention, like with this one, He's making miraculous progress,"

- Suvi Aika, Mother of 5 year old diagnosed with autism at age 2

It is very enouraging to see the progress toward health insurance coverage for autism being made in the United States. Maybe if enough US states provide coverage Canadian Prime Minister Stephen Harper will be persuaded to do more than provide a lack lustre one page web site to help the cause of autistic children in Canada.

Autism insurance bill gets Governor's approval

06:29 PM CDT on Friday, June 22, 2007

By ELISE HU
KVUE News

Texas will soon require health insurance companies to provide coverage for children with Autism, under a bill signed by the governor last week.

http://www.kvue.com/news/local/stories/062207kvuechildautism-jj.34b9fb0.html

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Autism Spectrum Disorder and ABA - Living With Autism

Lexi Cota's tutor, Sara English, coaxes her to repeat an "mmm" sound for a spoon of frosting.
(Journal Photo by Lauren Carroll)


The Winston-Salem Journal has done some excellent work on autism with this article and video Living With Autism. The article, interactive graphic and video do an excellent job of presenting the realities of life for an autitsic child and her family. It is done with a positive, but realistic, presentation of the challenges facing autistic children. And it cuts to the chase in telling parents of autistic children what they need to know. ABA based early intervention is critically important for your child's future. These pieces also present very well the challenges faced by parents in trying to educate their children including the inadequacies of the formal education system in helping educate autistic children.

"The Gordons suspected that Ross had autism when he was 6 months old, said Kristi Gordon, his mother. He never responded to people or toys, and could spend hours spinning things.

The diagnosis was confirmed a year later.

“No matter how much we thought it, it still kind of crushed us,” she said.

Others, like the Cotas, watch their seemingly typical child change into someone they don’t recognize. When she was a year old, Lexi was a charming, typical toddler, one who loved to pop out from behind doorways and say “hi!” Then, when she was about 16 months old, she began to change. She became at turns silent and withdrawn or unruly, running around and flapping her arms wildly. She was diagnosed with autism a few weeks before her third birthday.

No matter when they get the diagnosis, the message that goes with it is the same: Get help now.

Many experts say that children who are placed into therapy as soon as possible have the best chance of eventually living a relatively independent life in which they will be able to have a job, even if their social mannerisms are unconventional.

“When you see them young, and 11/2, 2 and 3, you have no way of knowing which child will respond well to intervention and which won’t. The idea is you provide intervention and treatment when they’re young,” said Dr. Kurt Klinepeter, an associate professor of pediatrics at Wake Forest University Baptist Medical Center and the medical director of Amos Cottage. Amos Cottage is affiliated with Wake Forest and offers services for children with developmental problems.

It’s difficult to tell how many children have other conditions that co-exist with the autism. About 30 percent of autistic children will have IQ scores in the normal range. Those children will have the best chance at eventually living independently, with jobs and typical lives - not just because they score well, but also because they have to be on the higher-functioning end of the autism spectrum to be able to take an IQ test at all, Klinepeter said.

The other 70 percent aren’t necessarily mentally retarded, he said. They could be more affected by the communication and social aspects of the disorder, which would make it nearly impossible to correctly administer an IQ test.

Children who are suspected of having autism usually end up at the county’s early-intervention program, either through a referral from a doctor or day-care worker, or because the parent is concerned enough to want an evaluation.

If the child is autistic, the county is in charge of providing therapy until the child turns 3, through the Children’s Development Service Agencies. Children can receive a combination of speech, occupational and physical therapies. Some also receive therapy through the ABC of NC center. It is paid for by Children’s Development Service Agencies.

Many parents want their children to receive Applied Behavior Analysis. The National Institute of Mental Health, the leading federal agency for research on mental and behavioral disorders, said that ABA has “become widely accepted as an effective treatment” in its booklet about autism. ABA is the only treatment specifically mentioned in the booklet.

http://tinyurl.com/2h5uqz

http://extras.journalnow.com/multimedia/2007/autism/autism2.wmv

http://extras.journalnow.com/multimedia/2007/autism/autism.html

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Real Autism Awareness - Early Intervention is Vital

As my son ages, he is now 11, I continue to fight for improved health, education and residential care for him and autistic persons on all points of the spectrum. In doing so I have not lost sight of the critical importance of early intervention for improving the life prospects of autistic children. I am not, and never will be, one of those who believes that in order to accept, love and find joy in my son I must accept and find joy in his autism.

To parents of newly diagnosed autistic children I say over and over again - do NOT listen to the sometimes irrational voices that tell you to accept and embrace your child's autism. Autism is by definition a disorder, a condition which brings with it many deficits in thought, communication, and behavior. True there are some savants and there are many high functioning autistic persons who have social deficits and some communication limitations. But there are also many lower functioning autistic persons for whom the reality IS life in residential or institutional care. It can be a life threatening and dangerous condition.

Love your child as he or she is, complete with his or her autism. But do not mistake your child for his or her autism. Fight to improve your child's lot in life no matter how many hand wringing, joy of autism advocates tell you that you are suppressing and rejecting your child. They will not be there to help your child when he bites himself repeatedly, when she wanders out the front door only to be found hours later, or when you are sick, elderly, infirm or deceased. They are interested in their agenda not in your child.

The most important way to help improve your child's abilities is to get as much behavioral intervention as intensively and as early as you can. ABA based intensive intervention meets the evidence based standards of federal, state, provincial, professional and academic autism organizations across Canada and the United States. To date it is the ONLY intervention that meets those high standards.

I am not alone in counseling new parents to seek as much early intervention for their autistic child as possible. There are many others. The following letter from the Journal-Standard really struck me because it was from the mother and father of an 18 year old young autistic man who also urge parents to seek early intervention for their autistic children.


J-S LETTER: Early intervention vital in autism awareness

Published: Saturday, April 14, 2007 9:44 PM CDT
E-mail this story | Print this page

April is Autism Awareness Month. As parents of an 18-year-old son with autism, we are pleased that unlike 15 years ago, when our son was first diagnosed, the term “autism” brings thoughts other than from the movie “Rainman.” But there's still a long way to go! Today, one in 150 individuals is diagnosed with autism. That is more common than pediatric cancer, diabetes and AIDS, combined! This epidemic needs to be addressed by all areas of society. We have a whole generation of children that have become “lost in autism.”

The following is an excerpt from www.autismspeaks.org. Please familiarize yourself with autism and its characteristics:

“Autism is a complex neurobiological disorder that typically lasts throughout a person's lifetime. It is part of a group of disorders known as Autism Spectrum Disorders (ASD). It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person's ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe.

Autism Spectrum Disorders can usually be reliably diagnosed by age 3. Parents are usually the first to notice unusual behaviors in their child or their child's failure to reach appropriate developmental milestones. Some parents describe a child that seemed different from birth, while others describe a child who was developing normally and then lost skills. Pediatricians may initially dismiss signs of autism, thinking a child will “catch up,” and may advise parents to “wait and see.” New research shows that when parents suspect something is wrong with their child, they are usually correct. If you have concerns about your child's development, don't wait: speak to your pediatrician about getting your child screened for autism.

If your child is diagnosed with autism, early intervention is critical to gain maximum benefit from existing therapies. Although parents may have concerns about labeling a toddler as “autistic,” the earlier the diagnosis is made, the earlier interventions can begin. Currently, there are no effective means to prevent autism, no fully effective treatments, and no cure. Research indicates, however, that early intervention in an appropriate educational setting for at least two years during the preschool years can result in significant improvements for many young children with Autism Spectrum Disorders. As soon as autism is diagnosed, early intervention instruction should begin. Effective programs focus on developing communication, social, and cognitive skills.”

For further information about autism, please go to www.autismspeaks.org. Also, on their Website is a very informative 13-minute segment entitled, “Autism Every Day.” It gives an accurate portrayal of what life is like for an individual with autism, as well as how it affects the family.

Steve and Marie Bernhard

Freeport


http://www.journalstandard.com/articles/2007/04/15/opinion/opinion95.txt

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Aubrey's Journey: Emerging from autism

If you do a google blog search on autism you will find many blog sites hosted by high functioning autistic persons who view autism in a positive light and characterize efforts by parents and advocates for autism cures and treatments as oppression, breaches of their human rights. There are other autistic persons, such as some who appeared before the Canadian Senate, who are supportive of efforts to assist autistic children and adults in overcoming some of the deficits associated with their autism. The Albany Democrat-Herald reports the story of Aubrey, a young lady with Aspergers' Syndrome who benefited from early intervention and left many of her autism deficits behind. Aubrey's mother, D.L. Clarke, has written a book about her daughter's story and hosts a web site where parents and other interested persons can learn more:

http://www.aubreysjourney.com/


Emerging from autism

When Aubrey was born in 1992, she looked and acted like all other babies.

But as she grew older, she began walking on her tiptoes, she pitched tantrums and she screamed when her hands got dirty. She did not want to play with other children, and she was terrified of swings and teeter-totters.

Yet, Aubrey was intelligent and often appeared normal in unfamiliar situations.

Physicians assured Clarke that her daughter was normal. Clarke knew differently in her gut, but she did not want to accept the fact that her daughter might not be “perfect.”

In a book released Jan. 15 targeted to parents of children with behavior problems, Clarke discusses ways to seek a diagnosis for various disorders in children, and she explains how to keep hope alive and not to give up in dealing with situations no one seems to understand.

It was not until Aubrey was 3 years old that an early intervention team from the Linn-Benton-Lincoln ESD used the word autism to describe Aubrey’s behavior.

“That diagnosis opened a door of support that we didn’t have before,” Clarke said. “Gradually we found out she had Asperger’s Syndrome and not full-blown autism.”

Since then, through counseling, therapy and family encouragement, Aubrey has left many of her symptoms behind.

“She’s not cured, but she’s learned to cope and adapt,” she said. “Part of what helped is I encouraged her to get involved in activities. I treated her the same way as my other two children, and told her I expected her to learn and be independent.”

Aubrey is now 14 and a freshman in high school. She has entered talent shows, been part of a singing group and a dance team. She tutors elementary students at a Boys & Girls Club, and she wants to go to college and eventually have a family.

“I can’t imagine the consequences if I hadn’t kept on pushing,” Clarke said.

Signed copies can be ordered through her Web site: aubreysjourney.com.


http://www.dhonline.com/articles/2007/02/02/news/local/3loc08_autism.txt

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