Autism/PDD – The News You Need This Week (4/16/12)

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It’s Autism Awareness Month, in case you didn’t know. :) Much is being said about it and about the new numbers from the CDC.  I’ve gone through everything I can find and here are links to some views and interpretations that I think best showcase the conversation…

What constitutes an emergency?

What I would like to suggest is that if you love someone with autism or care about the enormous increase let’s ask IACC to count the true number. Once we know the actual number of those living with autism, the true number in a timely fashion, we can then ask for answers to questions such as Why? And what are we going to do about it? Hundreds of thousands of families need answers.

The Autism Wars

According to the C.D.C., what critics condemn as over-diagnosis is most likely the opposite. Twenty percent of the 8-year-olds the agency’s reviewers identified as having the traits of autism by reviewing their school and medical records had not received an actual diagnosis. The sharpest increases appeared among Hispanic and black children, who historically have been less likely to receive an autism diagnosis. In South Korea, a recent study found a prevalence rate of one in 38 children, and a study in England found autism at roughly the same rate — 1 percent — in adults as in children, implying that the condition had gone unidentified previously, rather than an actual increase in its incidence.

Autism Prevalence: More Affected or More Detected?

Science can resolve this dilemma, but the methods to examine this question as well as the answers will be complex. While it is never possible to go back in time, longitudinal population based studies and even careful retrospective studies can determine if more children are affected and if the nature of the disorder is changing over time. The changes in prevalence of other developmental disorders, measured with biomarkers (Type 1 diabetes) or emergency room visits (food allergies), appear to be true increases in the number of children affected. As diagnostic changes and ascertainment fail to explain the majority of the increase in autism prevalence, it seems prudent to assume that there are indeed more children affected and continue an aggressive search for causes while striving to improve detection, treatments, and services. Our working assumption is that there are both more children affected and more detected.

Autism Spectrum Disorders on the Rise: Inside the CDC Report

The CDC report concludes that although multiple factors influence the identification of children with ASD and differences in prevalence estimates across sites, the data provided in this report indicate the need for further exploration of possible associations between overall ASD prevalence and improved identification among children without intellectual disability, children in all racial/ethnic populations, and both males and females, including potential interactions between these factors.

Thoughts on World Autism Day

So I say “thank you” for autism day! Thank you for a day that brings awareness to so many people across the globe. Thank you for a day I don’t have to break my own back to give out that awareness. Thank you for a day that may mean less stigma and more understanding for a growing issue. Thank you for showing me how much you are trying to understand.

And then there’s reality…

The Meaning of Time.

I was scared and frustrated. I knew he was trying. And I looked at him, looking at me. And despite it all, we laughed. In that moment, there was no fear, or judgment, no frustration, or anger. Just laughter. I saw the glint in my son’s eyes, relaxation, and a desire to please me. And love. And I just loved back.

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Autism/PDD – The News You Need This Week

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Matthew Pearson - One Face of Autims

This is Matthew - This is One Face of Autism

Today is Autism Awareness Day and marks the start of Autism Awareness Month. Please share this information with others and help spread the word. We need to start with Awareness so we can move through Acceptance to true Inclusion.

 

 

From Autism Speaks – Autism in the News – 04.02.12

Today, April 2nd, is World Autism Awareness Day. The United Nations recognizes today to spread awareness on the developmental disability that affects tens of millions of people worldwide and according to the Secretary-General, to put an end to the discrimination many people with an autism spectrum disorder face daily.

Autism: UCSF zeroes in on rare chromosome defect

For now, few standard treatments exist for autism beyond behavioral therapy. Some drugs work, but not for everyone, and often not very well. Even the behavioral therapy could be better tailored to the individual patient if doctors better understood what was causing the problem, said Dr. Linda Lotspeich, a psychiatrist with the Autism and Developmental Disorders Clinic at Lucile Packard Children’s Hospital at Stanford.

CDC: 1 In 88 Kids Have Autism

One thing the data tells us with certainty — there are many children and families who need help,” said CDC Director Thomas Frieden. “We must continue to track autism spectrum disorders because this is the information communities need to guide improvements in services to help children.

Autism Costs Soar To $137 Billion

We are paying for the costs of inaction and the costs of ‘inappropriate action,’” said David Mandell of the University of Pennsylvania, who is behind the research. “Social exclusion of individuals with autism and intellectual disability, and exclusion of higher-functioning individuals from employment opportunities are increasing the burden not only on these individuals and their families, but on society as a whole.

 DSM Committee Standing Firm On Autism Changes

We remain open to any concerns the academic and advocacy communities might have, but we strongly support the decisions that these leading researchers and clinicians have made,” said David Kupfer, chair of the DSM-5 Task Force, in a statement this week. “The proposed ASD criteria are backed by the scientific evidence.

And last but by no means least – agree or disagree, this article certainly gives everyone a lot to think about:

World Autism “Awareness” Day 2012 and We Are Not Buying It Any More

Did you hear the crashing thud last week when the CDC announced that 1 out of every 88 children has Autism? That was the sound of the medical establishment losing its moral authority in the Autism conversation. Despite Tom Insel, head of the IACC, spinning the message again as “better diagnosing”, the sharp reality of the rise of the Autism numbers cut through his assurances.

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Autism/PDD – The News You Need This Week (3/26/12)

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Auditory Processing and Autism

We long suspected that Matthew had auditory processing issues in addition to his Autism. We couldn’t really put our finger on exactly what was happening for a long time. We kept telling his IEP team that we thought he had hearing problems, but we knew that he could hear and he passed hearing tests with flying colors. Then at an IEP meeting when Matthew was in High School, someone was finally able to connect the dots. I don’t remember who said it but it was a blinding flash of the obvious: it’s not that he can’t hear it’s that he’s not processing what he hears correctly.

And suddenly it all made so much sense.

Now I understood why, after hearing the SpongeBob song a gazillion times a day, he still had the words wrong. We had him tested and it was clear that he had auditory processing problems. What we couldn’t discern was, were these problems stemming from his Autism or were his autistic behaviors coming from the auditory processing challenges. We still don’t know the answer but we do know that the services he is receiving and how we all work with him really doesn’t change.

I tend to believe that he has problems shutting out distractions. I think part of his Autism is not being able to discern where his focus should be. So even though he’s trying to learn the SpongeBob song he is still listening to all the other noises he’s hearing and watching everything around him. But we can help them with that to some degree. The challenge for me as his mother is to recognize when I’ve given him all the help he wants, which means he truly has all the help he can effectively use. I have to recognize that eventually the Law of Diminishing Returns sets in. Usually this is the point where he starts to get frustrated.

Some children may not only be diagnosed with Autism but also have other issues and diagnoses as well. A common secondary diagnosis for some children with Autism is Auditory Processing disorder or Central Auditory Processing Disorder (CAPD.) CAPD or auditory processing issues does not mean a child cannot hear. In brief, the child most likely has hearing issues. Hearing issues in CAPD or auditory processing issues could be some of the following:

They may not hearing all pitches of sounds (e.g., high sounds or low sounds.)

They may have significant issues with background noise

They may have auditory processing issues (for example: confusing the questions “How are you?” and “How old are you?”

Autism Online – Connecting Community and Resources

I discovered this great resource on Facebook and thought you might find it helpful. I am also posting it to the resources page.

Since 2002, Danya has developed and evaluated a number of educational products for individuals with autism spectrum disorders (ASD) and the caregivers, professionals, and advocates who work with them. As we prepared to take these programs to market, we realized that, while there are many Web sites with products and information about autism, there is no one online resource for individuals to go to find research-based, high-quality products that meet the needs of individuals with ASD.

AutismOnline is the only Web site of its kind devoted to providing research-based, effective, high-quality resources, products, and information on ASD across the lifespan. Products are geared toward individuals with autism, as well as their caregivers, teachers, professionals, paraprofessional, and advocates.

Our mission to provide products for all individual affected by ASD—including individuals with ASD themselves, caregivers, advocates, teachers, and professionals—makes AutismOnline a unique and extensive resource for the autism community.

Discovery of Abnormal Gene Pathways Suggests Targets for Future Medicines

Now this is exciting…

These findings are exciting because they point to genetic pathways involved in brain development and reorganization that could lead to the discovery of targeted pharmaceutical interventions,” says lead researcher Eric Courchesne, Ph.D., of the University of California-San Diego Autism Center of Excellence. For example, future medicines might be designed to alter gene activity in ways that promote repair or otherwise normalize brain development.”

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Autism/PDD – The News You Need This Week

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Autism: The Musical

“Autism: The Musical” has received two Primetime Emmys (for Outstanding Nonfiction Special and Outstanding Picture Editing for Nonfiction Programming) and numerous other accolades as well. It is now available for purchase and rental on DVD. Recently, Autism After 16 spoke with the film’s director, Tricia Regan.

People VS. Things by Mika Chabanik

Well, for me, this isn’t exactly the truth. Let me tell you exactly how the statement, “I am more drawn to things than people”, affects me and maybe it will help you with some of your fears.

Justice Sought for Autistic Girl Seized by Canadian Government

On June 16, 2011, Ayn Van Dyk, a ten-year-old girl with autism, was playing in her back yard. Derek Hoare briefly lost sight of his daughter after she scaled a 6-foot-high fence. Police were notified and after a several-hour search, Ayn was found playing safely in a nearby neighbor’s yard. If the story ended there, this would’ve been a happy ending to a terrifying ordeal. However, unbeknownst to Derek at the time, his nightmare had just begun.

Autism: Curse or Opportunity?

I used to think it was my job just to heal my son and recover him from autism. I now know he was also brought here to HEAL ME.

Autism on Public Assistance

In an effort to help our families afford the treatments that can help their children, TACA introduced the very popular article series “Autism-On-A-Budget,” but with the worsening economy, we’ve been getting many more requests for help from families who are on, or considering, public assistance programs like Medicaid, Food Stamps and other programs offered by state and federal agencies.

If you have found any great resources or stories, please share them in the Comments Section.

Autism/PDD – The News You Need This Week (3/12/12)

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Autism isn’t always obvious, but it’s always there

It’s hard to describe the feeling, as a dad, when people who mean well — and who you know mean well — look at you as if you’re some kind of bungling incompetent, who has jeopardized your child’s future by turning to the label-obsessed medical establishment instead of letting your kid be, well, himself.

Building a Transition Plan

Transition services are a coordinated set of activities that promote movement from school to such post-school activities as post-secondary education, vocational training, employment, adult services, independent living and community participation. They must be based on the individual student’s needs, taking into account his or her preferences and interests. Transition services must include instruction, community experiences, and development of employment and other post school adult living objectives. If appropriate, daily living skills and functional vocational evaluation may also be included.

Acetaminophen and its Possible Connection to the Rise in Autism

Why is the autism rate in Cuba so much lower than in the US and is there a single environmental factor that is causing the rise in autism?” We couldn’t wait to find out! The following is a summary of what we learned…

 NBC’s Parenthood Explores Autism

Sarah astutely pointed out that students aren’t ever allowed to simply “not participate” in math class. This, of course, is true: if either boy had a math disability, the math lesson would be modified to allow their full participation at a level appropriate for them, and they would be expected to participate. The time wouldn’t simply be wasted. The boys wouldn’t simply be left to their own devices, literally.

10 Reasons not to Discuss Child Sexual Abuse

Jill has presented ten myths that prevent us from talking to our children about it. All children, especially those with an Autism Spectrum Disorder, need to be armed with the knowledge necessary to protect themselves so please read this post, read her book, then read her book to your child and start talking. An informed child is a safe child.

The Brain – The Troublesome Bloom of Autism

 At the time, Courchesne was investigating how children’s brains respond to new pieces of information. “I encountered a clinical psychologist who studied children with autism,” he says. “She told me, ‘Autistic children aren’t interested in novelty. They’re interested in routine.’ ” Yet the young man Courchesne met showed more range. At first he responded to Courchesne’s questions only with short answers, “but when I talked with him further, I discovered he had a tremendous wealth of knowledge,” the neuroscientist recalls. “He had calendar memory. He just wasn’t interested in being sociable.”

Parenting Adults With Autism 

With just a bit of tweaking, my son, and growing numbers like him, can truly be beneficial to our society in ways people have not even begun to consider. And the “trick” for me is finding someone to give them a chance.

What the UK High Court’s Ruling on John Walker-Smith Means and Doesn’t Mean

It’s important to be very clear about what this ruling means. Mr. Justice Mitting did not find that Professor Walker-Smith’s actions were medically necessary or ethical. The ruling does not exonerate Walker-Smith. That was not what the hearing was about. Mitting was only ruling on the conduct, the decision-making, of the GMC’s Fitness to Practice panel. More broadly, Mitting found aspects of the GMC’s procedures to be flawed.

What Do School Personnel Know about Autism? 

There is a critical need for more coordinated efforts among community and school professionals for the training of teachers in evidence-based instruction and behavioral management practices for children with ASD.

Special-needs restraint called means to safety

“Disability advocates like to say that somehow schools are conspiring to hurt children and they’r e using seclusion and restraints as a tool to do this. That is not the case,” said Pudelski, government-affairs manager at the Alexandria, Va.-based group. “No school administrator that we represent believes that these techniques should be used as a means of punishing students. It should never be commonplace.”

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