One-of-a-kind model for autism services

Marc Bennie, 15, and his sister Julia, 13, have autism and are receiving support services at The Ability Hub. They are with their parents Maureen and Ron Bennie in Calgary on November 10, 2012.

Photograph by: Christina Ryan , PostMedia News

BY PAULINE TAM, OTTAWA CITIZEN

CALGARY — In 1999, when Maureen Bennie’s son, Marc, was diagnosed with autism at age two, she and her husband were left to cope on their own.

No one referred them to any support services for Marc, or even told them where they could find help. “I was given five pamphlets and I had one meeting with a social worker. That’s all the help I got,” Bennie recalled.

"The Child Development Centre, located at the crossroads of the University of Calgary campus and the Alberta Children’s Hospital, houses an array of autism services for all ages."

Instead of being steered immediately toward interventions that could have given Marc a fighting chance at blunting autism’s devastating course, Bennie wasted valuable time struggling to find speech and behavioural therapy — as well as ways to pay for those expensive services.

“It took me six months to figure it out on my own,” she said.

Still reeling from the shock of the diagnosis, Bennie felt so overwhelmed that she spiralled into a depression.

Read more >

Families Brace For Changes In Autism Diagnosis

By MAGALY OLIVERO, Conn. Health I-Team Writer | The Hartford Courant

Proposed changes to the official autism diagnosis are raising concerns among advocates and families with many fearing the new criteria will lead to a loss of services and a sense of identity for some high-functioning individuals with special needs.

"There's no question some people (on the autism spectrum) will lose services," said Dr. Fred Volkmar, an renowned expert on autism and director of the Yale Child Study Center. Volkmar was the lead author of a study that found that only 45 percent of those currently diagnosed with higher functioning forms of autism would meet the new criteria.

The concern has led a coalition of groups within the autism community to urge licensed clinicians worldwide to take part in an online research survey to gauge the impact of the new criteria, according to Katie Weisman, SafeMinds director of communications and policy. SafeMinds, the Holland Center and other organizations created the site: http://www.dsm5asdsurvey.org...  READ MORE >

Image courtesy of David Castillo Dominici / FreeDigitalPhotos.net

Asperger’s: ‘This is our normal’

Giulia Rhodes meets the Cook O'Tooles, a family of five who all have Asperger's syndrome

Jennifer Cook O'Toole and her husband, John, with their children Moira, Sean and Gavin: ‘My way of learning these unspoken social rules is to write them down.’ Photograph: Sarah Lee for the Guardian

Giulia Rhodes  |  The Guardian

Maura, nine, is an expert on ancient history. Her brother Sean, six, specialises in the classification of animals. Gavin, the youngest, has an encyclopaedic knowledge of Spiderman – a little less high-brow, but then he is only three.

All three like to hold forth on their chosen subjects – regardless of whether anyone else is listening or, for that matter, speaking. Family meal-times, admits their mother, Jennifer Cook O'Toole, can be quite a headache-inducing affair.

Fortunately, Jennifer and her husband, John, are not averse to delivering impassioned monologues themselves – about, respectively, the history of monarchy and astronomy – if the mood takes them.  READ MORE >>

Is Autism an “Epidemic” or Are We Just Noticing More People Who Have It?

Emily Willingham (Twitter, Google+, blog) is a science writer and compulsive biologist whose work has appeared at Slate, Grist, Scientific American Guest Blog, and Double X Science, among others. She is science editor at the Thinking Person’s Guide to Autism and author of  The Complete Idiot’s Guide to College Biology.

Even though autism is now widely discussed in the media and society at large, the public and some experts alike are still stymied be a couple of the big, basic questions about the disorder: What is autism, and how do we identify—and count—it? A close look shows that the unknowns involved in both of these questions suffice to explain the reported autism boom. The disorder hasn’t actually become much more common—we’ve just developed better and more accurate ways of looking for it.

In March the US Centers for Disease Control and Prevention (CDC) the newly measured autism prevalences for 8-year-olds in the United States, and headlines roared about a “1 in 88 autism epidemic.” The fear-mongering has led some enterprising folk to latch onto our nation’s growing chemophobia and link the rise in autism to “toxins” or other alleged insults, and some to sell their research, books, and “cures.” On the other hand, some researchers say that what we’re really seeing is likely the upshot of more awareness about autism and ever-shifting diagnostic categories and criteria.

Leo Kanner first described autism almost 70 years ago, in 1944. Before that, autism didn’t exist as far as clinicians were concerned, and its official prevalence was, therefore, zero. There were, obviously, people with autism, but they were simply considered insane. Kanner himself noted in a 1965 paper that after he identified this entity, “almost overnight, the country seemed to be populated by a multitude of autistic children,” a trend that became noticeable in other countries, too, he said.

In 1951, Kanner wrote, the “great question” became whether or not to continue to roll autism into schizophrenia diagnoses, where it had been previously tucked away, or to consider it as a separate entity. But by 1953, one autism expert was warning about the “abuse of the diagnosis of autism” because it “threatens to become a fashion.” Sixty years later, plenty of people are still asserting that autism is just a popular diagnosis du jour (along with ADHD), that parents and doctors use to explain plain-old bad behavior.

Asperger’s syndrome, a form of autism sometimes known as “little professor syndrome,” is in the same we-didn’t-see-it-before-and-now-we-do situation. In 1981, noted autism researcher Lorna Wing translated and revivified Hans Asperger’s 1944 paper describing this syndrome as separate from Kanner’s autistic disorder, although Wing herself argued that the two were part of a borderless continuum. Thus, prior to 1981, Asperger’s wasn’t a diagnosis, in spite of having been identified almost 40 years earlier. Again, the official prevalence was zero before its adoption by the medical community.

And so, here we are today, with two diagnoses that didn’t exist 70 years ago (plus a third, even newer one:PDD-NOS) even though the people with the conditions did. The CDC’s new data say that in the United States, 1 in 88 eight-year-olds fits the criteria for one of these three, up from 1 in 110 for its 2006 estimate. Is that change the result of an increase in some dastardly environmental “toxin,” as some argue? Or is it because of diagnostic changes and reassignments, as happened when autism left the schizophrenia umbrella?

To most experts in autism and autism epidemiology, the biggest factors accounting for the boost in autism prevalence are the shifting definitions and increased awareness about the disorder. Several decades after the introduction of autism as a diagnosis, researchers have reported that professionals are still engaging in “diagnostic substitution”: moving people from one diagnostic category, such as “mental retardation” or “language impairment,” to the autism category. For instance, in one recent study, researchers at UCLA re-examined a population of 489 children who’d been living in Utah in the 1980s. Their first results, reported in 1990, identified 108 kids in the study population who received a classification of “challenged” (what we consider today to be “intellectually disabled”) but who were not diagnosed as autistic. When the investigators went back and applied today’s autism diagnostic criteria to the same 108 children, they found that 64 of them would have received an autism diagnosis today, along with their diagnosis of intellectual disability.

Further evidence of this shift comes from developmental neuropsychologist Dorothy Bishop and colleagues, who completed a study involving re-evaluation of adults who’d been identified in childhood as having a developmental language disorder rather than autism. Using two diagnostic tools to evaluate them today, Bishops’ group found that a fifth of these adults met the criteria for an autism spectrum diagnosis when they previously had not been recognized as autistic.

Another strong argument against the specter of an emergent autism epidemic is that prevalence of the disorder is notably similar from country to country and between generations. A 2011 UK study of a large adult population found a consistent prevalence of 1% among adults, “similar to that found in (UK) children” and about where the rates are now among US children. In other words, they found as many adults as there were children walking around with autism, suggesting stable rates across generations—at least, when people bother to look at adults. And back in 1996, Lorna Wing (the autism expert who’d translated Asperger’s seminal paper) tentatively estimated an autism spectrum disorder prevalence of 0.91% [PDF] based on studies of children born between 1956 and 1983, close to the 1% that keeps... READ MORE >>

Image: FreeDigitalPhotos.net

FREE Autism eBook for Father's Day!

Free Health & Parenting ebook “Understanding And Treating Autism” looks at: 

What Causes Autism, Accepting The Diagnosis Of Autism, Doctors And Diagnosing Autism, Signs Of Autism, Gluten Free Diet, Medicine Used To Treat Autism, Alternative Treatments For Autism, How To Cope As A Parent Of An Autistic Child, Let Your Autistic Child be a Kid, Autistic Children Need Schedules, 10 Tips For Celebrating Holidays With Your Autistic Child, Treatments For Aspergers Syndrome, What Is Persuasive Developmental Disorder Not Otherwise Specified, Signs Of Persuasive Developmental Disorder and How PDD-NOS Is Diagnosed. 

Click ”Understanding And Treating Autism” to download (1.4 MB pdf) or view this FREE Health & Parenting ebook.

Note > for free MRR version (includes pdf, ecover and MRR license) click HERE

Courtesy of Free eBooks Canada

Newly diagnosed? Get the FREE "100 Day Kit"

Download the 100 Day Kit at Autism Speaks™

The Autism Speaks 100 Day Kit and the Asperger Syndrome and High Functioning Autism Tool Kit were created specifically for newly diagnosed families to make the best possible use of the 100 days following their child's diagnosis of autism or AS/HFA.

Anyone can download the 100 Day Kit for free! You can also view a web-version of each section by clicking on the links below. PDF files are available on each site. Click here to download the entire kit.

100 Day Kit Sections
Autism Diagnosis, Causes and Symptoms
Family Tips: Sharing, Caring and the Future
Early Intervention and Education Rights
Information on Therapies and Treatments
Assembling and Managing Your Team
10 Things Your Child Wishes You Knew
Resources by Topic
Action Plan for the Next 100 Days
Safety Tips
Useful Forms
Glossary

Request A 100 Day Kit

Families whose children have been diagnosed in the last 6 months may request a complimentary hard copy of the 100 Day Kit or the AS/HFA Tool Kit by calling 888-AUTISM2 (888-288-4762) and speaking with an Autism Response Team Coordinator. *Note: We are unable to ship kits internationally.

New! Through a generous partnership with FedEx, after calling an Autism Response Team Coordinator and providing them with your information, you can pick up a complimentary printed copy of the 100 Day Kit or AS/HFA Kit at a FedEx Office location near you!

How to Tell a Child They Have Autism Spectrum Disorder

How and when do you tell a child about their diagnosis of ASD? Is there a right age? How do you know when the child is ready to hear the information? These are frequently asked questions around helping a child understand they have ASD. It is recommended not to start this process before the age of 7. 

Children under that age generally don’t have enough understanding to grasp what autism is all about. When parents feel anxious about wanting to talk to their young child about autism, I usually suggest they begin with celebrating differences and building positive self-esteem. A couple ... more »

Autism Awareness Centre Inc. | Image: FreeDigitalPhotos.net

An Italian court has ruled there is a link between the MMR vaccine and autism

The long-running MMR vaccine/autism debate has been fired up again by two recent court rulings

8 May, 2012 - NYR Natural News

In what may be a ground-breaking decision, the Italian Court of Rimini has ruled that causation between an MMR vaccine and the resulting autism in a young child “has been established.”

The unnamed child received the vaccine in March of 2004 and on returning home immediately developed adverse symptoms. During the next year the child regressed, receiving the autism diagnosis one year later and is now 100% disabled by the disease. [ READ MORE ]

Image: FreeDigitalPhotos.net