Wednesday, March 29, 2006

New Blog for Parents

Check out Autism for Parents, for parents of children newly diagnosed as autistic.

science.gov

I just discovered science.gov, a cool FREE search engine for science information provided by US government agencies. It contains over 47 million pages of scientific information. If you register on the site, you can also save your searches and get e-mail alerts when new items that fit your search appear. My initial saerch on "autism spectrum disorders" brought up 160 results - some from well known journals. Everything I tried to look at was available in full text.

Okay, maybe it is just because I am a librarian, but to me this is really exciting!

Fidgety Classroom

This article chronicles an experimental classroom that allows students to stand up, roam around and "the school replaced the standard desks and chairs with adjustable podiums that allow students to stand, kneel on mats or sit on big exercise balls.". Why, you ask? To combat obesity! Has anyone thought that children with sensory intergration disorder or an ASD might benefit from this setup? Why aren't they trying to find out?

Tuesday, March 28, 2006

Teen Second Life

Second Life is a virtual reality game that creates an online community. Its creater has made a teen version for kids ages 13-17. A research associate at Harvard Medical School named John Lester has created an island within the community called Brigadoon for people with Asperger's Syndrome and their caregivers. It's a place where kids with Asperger's can practice their social skills. Here's an excerpt from an ABC News report:

"The main problem with Asperger's is a lack of, I guess you could call it, innate socialization skills," he explained. "Things that come instinctively to people without Asperger's, like how to walk into a room and have a conversation with people, how to feel comfortable in groups working together on projects — all of that is not instinctive to people with Asperger's."
Lester explains that although people suffering from Asperger's can learn these skills, it requires practice. Brigadoon was created for just that purpose.
"Some people in Brigadoon have done things like build little homes and little gardens where they have people over," he said, "they just sit around and talk about their struggles and their issues dealing with Asperger's on a daily basis."
Not dissimilar from work being done with virtual reality to treat phobias, Brigadoon offers a controlled environment where patients feel comfortable and can learn at their own pace.
"It's been shown that virtual reality environments help people with specific types of phobias and because it's a simulation it's less fearful for people," said Lester. "But at the same time it is close enough to reality so that the benefits gained from using these virtual environments will spill over into the real world."

Monday, March 27, 2006

Guide to Choosing an ABA Provider

Special Education Law Blog has a very useful post on choosing a practitioner of Applied Behavioral analysis. The post includes a link to guidelines for consumers published by the Cambridge Center for Behavioral Studies, located in Cambridge, Massachusetts.

Saturday, March 25, 2006

Study of Immune Systems

Poking around the web site for the Mind Institute, I found this intriguing tidbit:

A new study by researchers at the University of California, Davis, M.I.N.D. Institute and the NIEHS Center for Children’s Environmental Health demonstrate that children with autism have different immune system responses than children who do not have the disorder. This is important evidence that autism, currently defined primarily by distinct behaviors, may potentially be defined by distinct biologic changes as well.

-snip-

"This study is part of a larger effort to learn how changes in immune system response may make some children more susceptible to the harmful effects of environmental agents," said Kenneth Olden, director of the National Institute of Environmental Health Sciences, the federal agency that provided funding for the study. "A better understanding of the connection between altered immune response and autism may lead to significant advances in the early detection, prevention and treatment of this complex neurological disorder."

Read full press release here.

Autism Phenome Project

University of California, Davis M.I.N.D. Institute has launched the nation’s largest comprehensive assessment of children with autism to detect the biological and behavioral patterns that define subtypes of the disorder. The project called, the Autism Phenome Project is a longitudinal study which will assess 1800 children; 900 with autism, 450 with developmental delay, 450 developing typically.
The evaluation will include immune system functioning, brain structures/functions, genetics, environmental exposures and blood protein analysis. David G. Amaral, research director says, “the tremendous variation leads us to believe that autism is a group of disorders rather than a single disorder.”
More detailed information can be found here.

-From aba4autism

Thursday, March 23, 2006

Survey

Found this via the Chief Family Officer blog - Dr. Gary Brown, the chair of the Psychology Department at the University of Tennessee at Martin, which surveying mothers of healthy children under the age of 10 and those with Autism Spectrum Disorders. If you're interested, you can take the survey at ABA4Autism.com (the survey is at the bottom right under "Free Information"). Mothers who participate in the survey will receive a free program to teach their child to follow directions and free mini programs for common problems like sharing.

I have not yet tried this myself.

Wednesday, March 22, 2006

Person with AS Wins Disability Discrimination Suit

I found this article on the ASPIRES web site:
After a dedicated employee disclosed that she had Asperger's Syndrome and requested a transfer to a vacant position as an Americans With disabilities Act accomodation, her request was left in limbo for 1 1/2 years. She was forced to take a demotion and 45% pay cut. What happened next? Read on:
" In October 2003, Grossmont-Cuyamaca Community College District (GCCCD) administration placed her on an indefinite “illness leave” with no request for such leave from L.K., no documented medical necessity and no authorization by medical professionals. To this day, GCCCD does not allow L.K. to return to work...

On October 7, 2005, after a two-week trial, the El Cajon, CA, jury awarded L.K. damages for lost wages, lost benefits and mental distress in the total amount of $299,402.88.
The jury concluded that the employer subjected its employee with a disability to disparate treatment, and that GCCCD failed to timely engage in an ADA interactive process in good faith even after US Department of Education’s Office of Civil Rights (DOE OCR) intervention and request to comply with the law. "

The Sky's the Limit

A speaker with autism shared this message at the 11th annual Autism Spectrum Disorder Symposium at the Rhode Island Convention Center: "What is the potential of a person with autism? Well, it's unlimited, like anyone else's. We're looking at autism more as a different way of being. Who's to say it's a disordered way of being? ... Do we need to consider autism as something negative?"
Read the full article here at Autism Connect News. It was originally published in the Providence Journal).

Blow Bubbles for Autism

FACES is asking people to join in the third annual "Blow Bubbles for Autism" event.
SUNDAY, APRIL 2
OR
Monday April 3, 2006
April is Autism Awareness Month FACES Autism Support Groups of NJ are ASKING EVERYONE ~especially groups, churches and elementary school classes~ to blow bubbles with your kids! Send your wishes to the skies above for a cure to Autism. Each day, two children are diagnosed with autism in New Jersey. Each bubble will create awareness and be a wish of hope to families of autism. It is proven that positive thoughts can change behaviors, so why not try it? It is based on an old Cherokee custom using butterflies. Please join us if you can...If not, please do it for someone you love. Last year, kids all over the country joined us!!!!Blow bubbles, wear puzzle ribbons, teach kids and adults about autism today! Let us know if you have plans, and we will add you to our bubbles list. Raise money for local autism support groups and national agencies.
For more information, please contact Isabelle FACES Autism Support Groups at 609-822-1735, or facesgroup@comcast.net

Imprinted Brain Hypothesis

New theory on the devlopment of autism:

"The 'imprinted brain hypothesis' suggests that competition between maternally and paternally expressed genes leads to conflicts within the autistic individual which could result in an imbalance in the brain's development. This is supported by the fact that there is known to be a strong genomic imprinting component to the genetic and developmental mechanisms of autism and autistic syndromes.
Professor Bernard Crespi from Simon Fraser University, Canada explains: "The imprinted brain hypothesis underscores the viewpoint that the autism spectrum represents human cognitive diversity rather than simply disorder or disability. Indeed, individuals at the highest-functioning end of this spectrum may have driven the development of science, engineering and the arts through mechanistic brilliance coupled with perseverant obsession."

Tuesday, March 21, 2006

NICHCY

The National Dissemination Center for Children with Disabilities web site provides information on:

*disabilities in infants, toddlers, children, and youth,
*IDEA, which is the law authorizing special education,
*No Child Left Behind (as it relates to children with disabilities), and
*research-based information on effective educational practices

They have a state by state directory of state agencies serving children and youth with disabilities, state chapters of disability associations and parent groups, parent training and information projects, and contact information for state governors and sentaors. While by no means comprehensive, this is a good place to start looking for resources.

They also have a page set up for kids called "Zigawhat!"

It covers a broad spectrum of disabilities, but could be useful. They also date their information, so you know how current it is.

On the "Hub"

I am excited to learn that "On the Spectrum" has been added to the Autism Hub, a cool compendium of autism blogs from around the world. Cool!

NEA Guidelines

Another useful resource via the Special Education Law blog: the National Education Association's guidelines for teaching children with autism.

The chapters are broken down as follows:
Strategies
Communication
Sensory Integration
Social Skills
Behavioral Issues

Jason McElwain: A Different Perspective

I found this thoughtful essay on the Special Education Law Blog. It was written by Kathie Snow I think it brings up some very important points. Here is an excerpt:
"I'm disturbed at the hoopla generated. For if Jason had been a regular member of the team, routinely scoring three-pointers, this story would have never made the news! The media coverage left the impression that Jason scoring 20 points in the last few minutes of the game was some sort of miraculous occurrence (the story was repeatedly billed as "inspirational")! But, according to news reports, Jason routinely sunk three-pointers during practice. (So, did anyone else wonder why reporters didn't press the coach or other school personnel about why Jason wasn't allowed to be on the team? Did reporters not ask because they assumed they knew the answer: "Because he has autism.") Lest anyone think I'm being a Scrooge here, let me repeat that I'm delighted Jason was finally able to strut his stuff during a game---and I wish that this "proof" of his abilities led to his being a member of the team!"
Copyright March 2006 by Kathie Snow

Learn About ABA

FACES in southern New Jersey is sponsoring two workshops on Applied Behavioral Analysis. Here are the details:

"Applied Behavior Analysis:
It’s Not Just Discrete Trial Teaching"

April 4th & May 2nd
6:00pm to 9:00pm

The speaker for both workshops will be Beth Lieberman, MAT, from Wawa House South, a member of Eden Family of Services.

Part One: April 4th
This workshop will focus on a variety of behaviorally based teaching techniques that have shown to be effective strategies for individuals with autism.

Part Two: May 2nd
This workshop will focus on principles of reinforcement, functional analysis of behavior and functional communication strategies.

The fee for each workshop is a $5 donation for FACES members and a $10 donation for non-members.

* Workshops are open to all teachers, paraprofessionals, therapists and parents who wish to learn more about autism.
* CEU’s are available for educators.
* Other workshops will be held throughout the school year.

To register or for more information, please call Mary at (609) 569-8081 or send an email to faceseducation@aol.com

Monday, March 20, 2006

"That doesn't happen every day."

This article fills in more details about autism that people didn't read in all of the feelgood coverage about Jason McElwain, the Rochester-area youth who drew national attention after scoring 20 points in his first varsity basketball game.

Model Inclusion Program May Get the Axe

Cherry Hill, Nj school district may discontinue a program for special needs kids that puts them in a mainstream classroom with extra staff. The child profiled in this article has Asperger's.

"" ...You would not believe what these patient, caring children have given Jordan in confidence and self-esteem. He makes other children feel good and they get something in return. When you have a child surrounded by other children who can help that child, it's the greatest learning environment," said Debbie Schmidt, Jordan's mother.
"To phase the program out would be pitiful, and to send these kids back to their home schools away from their friends would be devastating. It's the social aspect that is key for these kids," said Heather Kramer, whose fourth-grade son, Mason, and second-grade daughter, Abigail, are nonclassified children in the program.""

Friday, March 17, 2006

Grants for free bracelets in PA

If you live in southwestern Pennsylvania, there is grant money available from AutismLink for free Project Lifesaver bracelets for children who wander. Details and link to an application here.

Wednesday, March 15, 2006

Take the Time To Celebrate

Lisa Jo Rudy at about.com has started a page where people can share their ASD kids' everyday small triumphs. She calls it "Shared Celebrations". What an excellent idea! She also has a lot of information on her page about Autism Spectrum Disorders. (Just be careful where you click at about.com. They have a lot of advertising on their pages.)

Tuesday, March 14, 2006

College Open House

The College of New Jersey's Department of Special Education, Language & Literacy Center for Assistive Technology & Inclusive Education Studies is having an Open House on March 15th from 6-8 pm for their Career and Community Studies Program. This is a transition and postsecondary course of study for students who have intellectual disabilities. Registration begins April 1 2006 for Fall 2006 enrollment.

STUDENTS with Intellectual Disabilities
Refers to students with significant limitations, both in intellectual functioning and in adaptive behavior whose disability impacts their ability to access a liberal studies curriculum thereby dictating a program focusing on the development of career, community participation and life long liberal learning. These are young adults that require a strong system of supports and services.
This program is non-accredited and does not result in a degree from TCNJ.

Career & Community Studies is a college-based, liberal studies program designed to prepare students (ages 18-25) for adult life through academic rigor, career discovery and preparation and peer socialization as part of a diverse community of learners. Students must be highly motivated young adults who have received extensive educational services in either public or private schools and would likely have considerable difficulty succeeding in a traditional college degree program.

For more information, contact Project Coordinator Rebecca Daley 609-771-2381 or daley@tcnj.edu

Monday, March 13, 2006

Listen to the Radio on March 17

On Friday mornings, National Public Radio airs installments from StoryCorps, a project that collects stories told by everyday people. They are truly amazing to hear. The story this Friday will feature an interview a 10 year boy with Asperger's does with his mother. She has a blog here.

Training First Responders

The Boston Globe recently had a good article that highlights the reasons that first responders need training in understanding the behaviors of people with autism:
"The need for different tactics in dealing with autistic children was highlighted for advocates and for public safety personnel in August 2004, when an autistic child in Millis wandered away from his home and was missing for four days. Searchers had to alter their standard methods to locate the boy, because he had an aversion to loud noises, such as those made by helicopters and dogs."

Friday, March 10, 2006

Bracelets can help track kids who bolt

This article is about electromagnetic bracelets that can track kids who wander. The Frederick's County Sheriff's Office in Maryland is using Project Lifesaver, usually used for patients with Alzheimers, to keep track of kids with autism.

Theory of Mind

Mindhacks has a very interesting post about research into the claim that people with autism have an impaired theory of mind :

" (that is, they are supposedly not able to imagine what other people are thinking)...This typically infuriates people with autism, especially when it gets translated into the more everyday, and, perhaps, even less accurate claim, that autism involves a 'lack of empathy'."

A researcher is starting to question this claim.

Read the Mindhacks post - it really explains it well. You may have to scroll down the page a bit. It was posted today with the title "Is theory of mind impaired in autism?"

Thursday, March 09, 2006

An Heir to the Raffi Throne?

Children's entertainer Zany Zack is inspired by his daughter, who has PDD-NOS:

"Early on after the diagnosis, it's extremely typical to feel the following emotions: absolute bitterness; confusion; resentment of, not your child, but but any higher power you believe in; and self-pity," Kazoleas says of the process he and his wife went through. "But at some point, you realize that your child was created the way they should be. You can't change them because then that wouldn't be your child."

Wednesday, March 08, 2006

The "C" Word [Cure]

Here's a review of The Autism Sourcebook by Karen Siff Exkorn and Help for the Child with Asperger’s Syndrome by Gretchen Mertz.

"Both Mertz and Siff Exkorn have seen significant improvement in their sons’ abilities; both boys attend mainstream classrooms with minimal intervention from aides or therapists. HarperCollins even promotes Siff Exkorn’s book with the upbeat cover line “From a Mother Whose Child Recovered.”
Still, Brown psychologist [Rowland] Barrett offers a word of caution. “Autism spectrum disorders are lifelong, serious developmental disorders, and there is no cure,” he says. While nearly a quarter of autistic children move into mainstream classes as they respond to early, intensive interventions, half show little improvement. Furthermore, he says, autistic children retain tendencies that may affect them later in life—when social de­mands at school increase, for example, or at times of stress.
“The assumption,” Barrett says, “is that because such children become indistinguishable to the naive observer, they’re cured and life will go on normally for them, that they’ll be on the normal developmental trajectory for the rest of their life. Our experience is that that’s not necessarily so.”

Tuesday, March 07, 2006

More info on NAAR and Autism Speaks Merger

This article gives more detailed information about the merger of Autism Speaks and the National Alliance for Autism Research.

" 'There is no test for it," [Eric] Giunta said, "no drugs for it. There’s no cure for AIDS or cancer, but we know why they happen. That’s the most frustrating part of autism."
Giunta said researchers are leaning toward a combination of genetics and environmental triggers, but nothing is a sure bet thus far.
..."Things are definitely progressing," Giunta said, explaining that in 1997 there were fewer than 10 people in the world researching autism, and in the last two years the organization has been forced to reject very worthy grant proposals due to lack of funding.
"It’s frustrating, but it’s a statement," Giunta said. "It says there’s a standard of grants we look for that will not be compromised."

"It's the Attention to Detail That Slows You Down"

Insightful interview with the autistic author of a memoir entitled "Send In the Idiots"

" 'And,' he says, 'none of us has direct insight of someone else's feelings. We don't know when someone is in pain. We think they are in pain because we see them react. Autistic people don't pick up on those cues. It's not that they are incapable. They might be noticing instead the pattern of coals in the fireplace or the details on the lamp and so on.'

It's the attention to detail that slows you down, he says. To the tormented souls at the dark end of the autism spectrum, everything is detail. They lack category awareness. They can't see the wood for the trees, or the trees for the bark, or the bark for the wavy lines. Their minds are so consumed by the struggle to take meaning from life's blizzard of information that what other people are up to is of no more consequence than the movement of the planets."

Vines Interview

More details revealed about The Vines lead singer Craig Nicholls' diagnosis of Asperger Syndrome. (His roadie was the first to figure it out!) - the language of the article is a bit salty.

"Nicholls's erratic behaviour, then, ticks all the Asperger's boxes. He's not another messed-up rock star who's an accident waiting to happen. He's neuro-divergent. In other words, 'rock star' is the worst career Nicholls could have chosen.
'That's what the professor told me,' Nicholls smiles, presumably referring to his therapist."

Monday, March 06, 2006

Asperger's Seminar

The authors of Parenting Your Asperger Child are giving a 6 hour seminar in Montgomery county, PA:

ASPERGER’S SYNDROME:BUILDING SOCIAL THINKING AND SOCIAL COMPETENCE SKILLS
FROM START TO FINISH
A 6-hour seminar for professionals and parents
Wednesday, April 5, 2006
8:30 am to 4:30 pm
Williamson’s Restaurant/Conference Center
Easton Rd (Rt. 611) & Blair Mill Rd.
Horsham, PA 19044
(Montgomery County)
(215) 675 - 5454

Sponsored by:
SOHN GRAYSON
Autism Consultants
(610) 825 - 7567
(215) 968 - 8684

Friday, March 03, 2006

"Factors Associated with Age of Diagnosis...

...Among Children with Autism Spectrum Disorders"

"Results. The average age of diagnosis was 3.1 years for children with autistic disorder, 3.9 years for pervasive developmental disorder not otherwise specified, and 7.2 years for Asperger's disorder. The average age of diagnosis increased 0.2 years for each year of age. Rural children received a diagnosis 0.4 years later than urban children. Near-poor children received a diagnosis 0.9 years later than those with incomes >100% above the poverty level. Children with severe language deficits received a diagnosis an average of 1.2 years earlier than other children. Hand flapping, toe walking, and sustained odd play were associated with a decrease in the age of diagnosis, whereas oversensitivity to pain and hearing impairment were associated with an increase. Children who had 4 or more primary care physicians before diagnosis received a diagnosis 0.5 years later than other children, whereas those whose pediatricians referred them to a specialist received a diagnosis 0.3 years sooner. "

This article from the journal Pediatrics is currently available online.

Tips for shopping trips

This article gives some advice on what to teach autistic kids so that trips to the grocery store become manageable. Here's an excerpt:
"For most children, instruction should begin in simulated practice settings at home or in school before moving on to a small grocery or convenience store. The child should be able to follow a number of basic instructions in a more controlled environment before visiting a larger supermarket.
Developing a plan to address problem behaviors is important. The plan should be the same for school and home. Immediately leaving the store and not providing a reward can be effective, unless the child's behavior problems occur because he or she wants to leave the store. "Giving in" and offering the child a toy or edible treat to avoid or stop a tantrum may be effective for the moment, but will likely make the problem worse in the future. "

What It's Like for Parents

"Ben Reich's pediatrician was not helpful, but the Reiches insisted on a referral to a pediatric neurologist who finally made the diagnosis. Along with the news that their son had a pervasive and probably lifelong disability, he handed them an autism pamphlet and wished them good luck.

That was it. " [Emphasis mine.]

This article really captures the experience of parents of a child on the spectrum. The difference between the services available for this child's hearing impairment and the level of assistance in place after the autism diagnosis is very telling, I think:

"I simply could not believe it after the experience we'd had with Ben's hearing. Services for the deaf here are absolutely great. After Ben was evaluated (for deafness), the audiologist informed the Center for Hearing Impaired Children, and the next day, a speech therapist called to set up appointments in our home. There was a preschool; there were support groups; there was information about hearing aids. It was all laid out.

"With autism, it was the exact opposite."

Wednesday, March 01, 2006

Computer Assisted Therapy

Free 30 day trial is available for TeachTown, a computer- assisted treatment service for children with autism. TeachTown's intervention is based on the principles of applied behavior analysis and incorporates teaching procedures from both discrete trial and pivotal response training.

The curriculum teaches a broad range of skills across several domains, including emotion identification, matching feelings to events, face matching, following eye gaze, friendship, safety awareness, personal needs, sequencing, phonics and early reading, vocabulary, mathematics, time, money plus off- computer generalization activities. The subscription is designed for children with a developmental age of 2 to 7 years. TeachTown: Basics also includes extensive data tracking, exceeding IEP reporting requirements in all fifty states, plus a communication interface that connects all members of the child's team. Full text of press release here.