Tuesday, February 23, 2010

Autism 911

When people ask what I want to do with my next Master's and BCBA certification, this is exactly it.

Autism 911

Part II

Part III

ACT Today!

I got an email last Friday that ACT Today! is following me on Twitter. That's huge!

Here's some info on this great charity that I support.


Welcome to the Arizona Chapter of ACT Today!

Arizona's chapter of ACT Today was established by parents and community leaders dedicated to improving the lives of families locally. Parents may apply for grants to pay or to supplement payments for treatment and care for their child with autism. All grants are made payable directly to the child's provider.

The ACT Today! Arizona chapter's mission is to support Arizona families impacted by autism by increasing their access to therapy and supports. Our vision is that the quality of life for all Arizona children with autism has been improved through therapy and supports.

A.C.T. Today was established in Southern California by Dr. Doreen Granpeesheh and attorney and father of a child with autism, Bill Cernius to help parents shoulder the enormous financial burden of acquiring care for their children with autism.

Monday, February 22, 2010

Feeling good about possible work opportunities

As you all know, in January, I started the MEd. program with an emphasis on Autism at ASU. I learned last week that I will be done next March and I will be able to sit for the BCBA exam then.

Last Friday, I googled the places that provided ABA for families affected by Autism in AZ. I came up with about 10 from the Autism Speaks website. The one farthest west in Phoenix was Bista at the 17 and Peoria Ave. I sent them an email inquiring about services for Joey and part time volunteer or job opportunities for me. I received an email sunday requesting my resume and a follow up call today. The woman sounded very excited to talk to me and was looking forward to talking to me again.

About an hour later, I receive a call from Ryan at Absolute HCBS who will be setting up Joey's respite and habilitation. He called to confirm that we were set to start in March but he also wanted to know more about my schooling and asked what I planned to do when I was done next spring. He told me about a person he has in Tucson who may set up ABA-based trainings and wanted to know if I would be interested in being his person in Phoenix to set up an ABA program?

Two great phone calls in 1 day!

Another story about a Grandmother's love

Here is a story about one Grandmother's fight in Texas to raise awareness about Autism for her grandson and all the residents in her small town.

Here's the link:

What's really in that bottle?

Interesting information about the ingredients in some hypo-allergenic formulas. My friend Sarah in WA sent this my way.

Here's the link:

Saturday, February 20, 2010

Grandparent Survey from Disability Scoop

Great article; one that shows positivity and support from the grandparents of our kids with Autism:

Here's the link:

Autism Reshaping Grandparent Role, Survey Finds

By Michelle Diament
February 19, 2010

Grandparents are often the first to suspect that a child may have autism and they play a major role in caring for children once they are diagnosed, according to preliminary findings from what is believed to be a first-of-its-kind survey of grandparents of those on the autism spectrum.

Initial results from the ongoing survey conducted by the Interactive Autism Network, or IAN, paint a revealing picture of life with autism extending far beyond the nuclear family.

Across the board, grandparents report being heavily involved in the daily lives of their grandchildren with autism. Over 36 percent say they take care of their grandchild at least once a week and about 1 in 5 indicate that they provide regular transportation for the child. Moreover, 72 percent of grandparents say they play some role in making treatment decisions for their grandchild.

In many cases, grandparents are sharply adjusting their lifestyle to accommodate a grandchild with autism. Many say they moved so they could be closer to their grandchild, while 1 in 10 report living in the same household.

Meanwhile, about a quarter of grandparents report spending up to $99 a month on their grandchild, with some shelling out over $500 or $1,000 monthly. And an overwhelming majority say they are making sacrifices to help provide for a grandchild with the developmental disorder — including going without something they hoped for, drawing on retirement accounts or borrowing money.

“It’s not so much what they spend, but what they give up,” says Connie Anderson who is heading up the grandparent survey in her role as the community scientific liaison for IAN. “They’re giving up vacation or feeling tied down in a way they didn’t expect in terms of caregiving,”

IAN is a national autism registry that has been collecting data on parents and children with autism since 2007. It boasts the largest collection of autism data in the world, but the survey marks IAN’s first foray into the grandparent sector. The survey, which began collecting responses in October 2009, came about after numerous grandparents inquired about sharing their experiences.

“The grandparents have their own journey that they’re going through,” Anderson says. “Some of them are very resilient and they really celebrate their grandchild with autism and some of them are still going through grief.”

IAN is continuing to collect survey responses for the next couple of weeks from grandparents of biological, adoptive or step-grandchildren with autism. Researchers will then analyze the data collected with hopes of publishing their findings in a scholarly journal.

Most grandparents who took the anonymous survey so far were ages 55 to 74 and were the parents of the child’s mother. They varied in their level of involvement, ranging from those who lived in the same household as their grandchild to those living across the country, though Anderson acknowledges grandparents who are uninvolved or in denial about a child’s diagnosis are unlikely to participate.

In addition to day-to-day involvement with their grandchild, nearly all grandparents said they read or do research to learn about autism and many report participating in fundraisers or advocating on behalf of their grandchild. Moreover, almost 90 percent say they are closer to their adult child because their grandchild has autism.

Copyright © 2010 Disability Scoop, LLC. All Rights Reserved.

Friday, February 19, 2010

More info about Wakefield

The previous post about Dr. Melmed on the news, as well as a post last year about a Dateline special featuring Dr. Wakefield can provide more information on this person and what he means to the Autism Community.

Here's the link to the current article about him from The Autism News:

MMR vaccine doctor Andrew Wakefield quits autism centre

February 19th, 2010
Goto comments Leave a comment
The Autism News English

By Aidan Jones The Guardian

Andrew Wakefield, the doctor whose research triggered a health scare over the MMR vaccine in Britain, has resigned from the autism centre he founded in Texas.

His resignation follows disciplinary hearings at the General Medical Council in London last month which ruled he acted dishonestly and irresponsibly over a 1998 paper in the Lancet medical journal which claimed to have found a link between the MMR jab, bowel disease and autism.

The research prompted a slump in the number of children administered the jab for measles, mumps and rubella. At the time of his research Wakefield was working at the Royal Free hospital school in London.

In 2005 Wakefield, 53, established the autism centre Thoughtful House in ­Austin, Texas, while his research came under increasing scrutiny in the UK.

Thoughtful House said Wakefield had left his post ­voluntarily to avoid the controversy overshadowing the centre’s work. “The needs of the children we serve must always come first. All of us at Thoughtful House are grateful to Dr ­Wakefield for the valuable work he has done here,” the clinic said.

“We fully support his decision to leave in order to make sure the recent GMC ­findings did not interfere with the ­important work that our team of clinicians and researchers is doing on behalf of ­children with autism.”

Initially Thoughtful House stood behind Wakefield despite the GMC’s ruling on 28 January, saying it was disappointed by the “unfounded and unfair” charges made against him and two colleagues.

Wakefield has stood by his initial research. With counsel, he took part in the GMC fitness to practise hearing, though he did not attend the day on which the panel handed down its adverse finding.

Source: http://www.guardian.co.uk/society/2010/feb/19/wakefield-quits-texas-autism-centre
Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace.

AZ Channel 12 News Link about autism study being discredited

Raun Melmed spoke to Channel 12 news about the vaccine study, claiming vaccines cause Autism, being discredited.

Here's the link for the article and clip:

Tuesday, February 16, 2010

More info on the DSM-V

Article from cnn.com; here's the link:

Move to merge Asperger's, autism in diagnostic manual stirs debate

(CNN) -- For Mary Calhoun Brown, the term "Asperger's" is crucial to conveying to schools that although her 15-year-old son has had social difficulties, he has a near-genius IQ and great speaking ability.

"If I call it 'autism,' that's going to raise a lot of red flags for people who don't know him," said Brown, author of the novel about autism "There Are No Words."

Both Brown and her son William are opposed to new guidelines being put forth by the American Psychiatric Association that would make Asperger's syndrome part of the autism spectrum disorders rather than a separate diagnosis. In the current edition of the Diagnostic and Statistical Manual, which helps mental health professionals identify specific conditions, it is not listed under autism.

The revisions are being considered for the DSM's fifth edition, due in 2013. They were made public Wednesday at DSM5.org, and are available for public comment until April 20.

Read more about the proposed changes to the DSM

The clustering of Asperger's and other developmental conditions with autism has generated a flurry of comments and concerns among people with the conditions, as well as parents.

The Asperger's Association of New England, a nonprofit organization with more than 3,000 members, has written a letter to the APA committee in charge of revising autism diagnoses explaining that Asperger's should remain separate, said Dania Jekel, the association's executive director. The group is currently trying to mobilize other organizations to speak out and do what they can to see that the diagnosis remains in the DSM V.

"This is their identity, which is really being taken away," Jekel said. "If everybody's sort of lumped together, we're going to lose that."

Brown cited rumors that such intellectual icons as Thomas Jefferson and Albert Einstein may have had Asperger's, which fuel the positive image that has been cultivated in reference to the condition.

"Autism tends to be defined as a deficit, and people with Asperger's see themselves as having an advantage in life," said Eileen Parker, 46, of Minneapolis, Minnesota, who has Asperger's. That is why the community is split over the DSM issue, she said. She personally agrees that Asperger's belongs under autism for scientific reasons.

Dr. Charles Raison, psychiatrist at Emory University, acknowledged that "autism" is a "frightening word," and that moving Asperger's under autism may pathologize it more. Still, it is more accurate to call it a form of autism, he said.

"It may be there that there's some political fallout, but from a scientific point of view I think the use of these spectrum ideas is much closer to the underlying biology," he said.

Asperger's syndrome, which affects about two out of every 10,000 children, is characterized by poor social skills, physical clumsiness, and narrowly focused interests, according to the National Institutes of Health.

William's main problems still lie in relating to other people -- he has trouble picking up on nonverbal communication, with gauging the strength of a relationship and with asking people to do things.

"I still don't know how people work, and that's one of the things I'm interested in," he said. "I don't think I'll ever get over that."

Part of the rationale is that the term Asperger's has become too vague, and may currently prevent some children from receiving the assistance they need at schools that offer "autism" services and don't necessarily include them, said Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center, who is on the American Psychiatric Association committee looking at autism.

But William, who received his diagnosis at age 5, is worried about the opposite.

"I believe that if we take away 'Asperger's syndrome,' people will not know as easily what this child needs to excel in school and in life," he said. "For instance, someone who has high-functioning autism may have a learning disability, but someone with Asperger's may not."

Jekel is also concerned that people with Asperger's would be perceived as having "mild autism" and not qualify for appropriate support.

Parker, who runs the blog Inside the Autism Experience, only found out her condition had the name Asperger's four years ago, and the diagnosis opened her up to a world of helpful therapies she didn't know existed. But she said the symptoms resemble autism characteristics, and that the conditions are part of the same continuum.

William said he would feel comfortable calling himself a "high-functioning autistic" because technically Asperger's is so similar, and he himself feels so far along -- he is an accomplished student debater and will attend Harvard Summer School -- that his parents sometimes tell him he may not receive the same diagnosis today. His concern about the Asperger's designation in the DSM is mostly in relation to those who need additional help, and for parents, he said.

"I don't think it would be in the best interest of the parents with children who are just being diagnosed, and also for kids who really do need what people with Asperger's need instead of what people with autism need," he said.

The Anthem for Autism

A great song and moving video for our kids.

Here's the info:


It's a song from a personal place. I'm in Here will touch people's hearts and help raise funds and awareness for autism. It's attracting attention from listeners around the world and donations have...
It's a song from a personal place. I'm in Here will touch people's hearts and help raise funds and awareness for autism. It's attracting attention from listeners around the world and donations have begun to pour in. The song is sung from the point of view of a child with autism communicating to a loved one."I'm in here when the joy turns to crying, see the world through my eyes for just a moment in time," say the lyrics to I'm in Here. "I'm in here, oh don't you know I'm trying to find the way to show you who I am."Please e-mail this video to everyone you know. Post it to every group you can think of. Let's make this song a number one hit for our children.

Temple Grandin: My Life in Pictures

If you haven't seen the movie, Temple Grandin, on HBO, then try and find a way to see it! It was great, very moving for all people who are touched by Autism.

Check out this link for a great coloring book....

Temple Grandin:My Life In Pictures
A Coloring book for children with Autism

http://i.cdn. hbo.com/assets/ pdf/movies/ temple-grandin/ coloring- book.pdf

You can also go to HBO.com and look at Temple Grandin.

Webinar event

From Temple Grandin to Moms Fighting Autism...seeing the vision connection
Statistics from the Autism Society shows that autism is the fastest growing developmental disability in the US . Current studies are suggesting that Autism is occurring in 1 in 110 children with nearly 1.5 million living with this condition. Autism is a spectrum disorder that typically includes pervasive developmental delays in sensory processing. One critical area to a child with Autism can be vision development.

One of the most famous adults with autism is Temple Grandin, PhD., who has been able to rise above the challenges associated with autism. Her story is now being told in the HBO full length feature film entitled Temple Grandin, staring critically acclaimed actor, Claire Danes. As a testament to her ability to apply herself, Dr. Grandin describes the impact of her vision in her book, Thinking in Pictures, and Other Reports of My Life with Autism.

Expanding this awareness is a new group, Moms Fighting Autism. Moms Fighting Autism is a monthly webinar service dedicated to helping moms who have children with autism. And this month the Moms Fighting Autism Webinar is featuring one of Optometry's leading lecturers, writers and clinicians in the area of Developmental Vision...Dr. Carl Hillier.

Dr. Hillier's webinar is occurring on February 16, 2010 at 6:PM PT. Dr. Hillier will be discussing “Vision and Living Within the Autistic Spectrum,” including Vision Therapy. To register for this FREE webinar click here.

Dr. Hillier was also recently featured on San Diego 6 News. Click here to see Dr. Hillier's interview with reporter Greg Phillips. The topic was how hidden vision problems can be the cause of your child's reading disabilities.

With greater public awareness of the vision problems associated with autism, more children (and adults) can find the developmental vision care that will help those with autism to lead a more happy and productive life. A good way to find a doctor who specializes in developmental vision care is to go to the College of Optometrists in Vision Development website and search for a Board Certified Fellow in your area.

Did I forget to mention...?

Thursday, February 11, 2010

Asperger's and the DSM-V

The DSM, or the Diagnostic and Statistical Manual of Mental Disorders, is the bible for the mental health field. Families and practitioners rely on this book. What has long since been associated with Autism or even said to be an Autism Spectrum Disorder, Asperger's has now been placed on the Spectrum in the DSM-V. This may help get services but for some with Asperger's, they don't want to be considered "Autistic."

Here's the link:
Asperger's Offically Placed Inside the Autism Spectrum

Here's the article:

Asperger's Officially Placed Inside Autism Spectrum
by Jon Hamilton
February 10, 2010

Listen to the Story
Morning Edition
[4 min 26 sec]
Add to Playlist

Many people with Asperger's take pride in a diagnosis that is thought to describe many important historical figures, including Albert Einstein (pictured above) and Isaac Newton.

February 10, 2010

Asperger's syndrome is really just a form of autism and does not merit a separate diagnosis, according to a panel of researchers assembled by the American Psychiatric Association.

Even though many researchers already refer to Asperger's as high-functioning autism, it hasn't been listed under the autism category in the official diagnostic guide of mental disorders, called the Diagnostic and Statistical Manual, or DSM. The DSM serves as a guide for mental health professionals and government agencies.

But a new draft fifth edition released Wednesday moves Asperger's officially into the autism category, provoking a wide range of responses among people with Asperger's — some of whom say they do not want to be labeled as autistic.

Redefining A Disorder

Instead of including a diagnostic category for Asperger's, the DSM 5 draft includes traits associated with Asperger's, such as difficulty with social interactions and limited, repetitive behaviors, in a broad category called autism spectrum disorder.

"The intent is to try to make the diagnosis of autism clearer and to better reflect the science," says Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center. Lord is part of the group that decided to consolidate autism-related categories, including Asperger's.

But the change is going to be hard for some people with Asperger's, says Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership in New York and author of Asperger's From the Inside Out. "I personally am probably going to have a very hard time calling myself autistic," says Carley, who was diagnosed with Asperger's years ago.

Many people with Asperger's take pride in a diagnosis that probably describes some major historical figures, including Albert Einstein and Thomas Edison, Carley says. Under the new system, those people would represent just one extreme of a spectrum. On the other extreme is "somebody who might have to wear adult diapers and maybe a head-restraining device. This is very hard for us to swallow," he says.

Yet Carley says he agrees with the decision to fold Asperger's into the autism spectrum disorder diagnosis.

Blurred Lines From The Start

Since 1994, when the fourth edition of the DSM added the Asperger's category, health care professionals have struggled to find a way to separate Asperger's from autism, Carley says. "Every time they've tried to draw that line it's been proven false in practice," he says.

Right now, the diagnosis often hinges on a person's language skills. But that's pretty subjective and can change as a child grows up, researchers say. "The categories are just not used by clinicians in a reliable fashion," Lord says. A single category for autism spectrum disorder will let clinicians stop agonizing over which diagnostic category to put someone in and focus on their specific difficulties with communication, or social interaction, or information processing, he says.

The change makes a lot of sense, says Roy Richard Grinker, an anthropologist at George Washington University who has studied autism in various cultures. He is also the author of Unstrange Minds, a book about his daughter, who has autism. "As somebody who has a child with a diagnosis of autism, I want to be able to turn to the official criteria and see a description that sounds like my child," Grinker says. "Right now my child sounds like three or four different disorders."

When his daughter was 4, she met the criteria for classic autism, Grinker says. Now that she's in high school, she would probably be considered Asperger's or maybe just a quirky kid, he says.

Eliminating the Asperger's diagnosis won't mean that people in that category will lose access to services, Grinker says. That's because "almost anybody with an Asperger's diagnosis also could qualify for what is called autistic disorder," he says, adding that the change could make it easier for some parents to get help for a child with Asperger's.

Right now, states including California provide services to children with autism but not those with Asperger's, Grinker says. "So removing Asperger's really removes what is a false barrier to parents getting care for their kids."

**Reworking The Book Of Mental Disorders**
When clinicians see a patient with mental health issues, part of their job is to determine if the patient is experiencing temporary emotional struggles or if the patient has an illness. To do this, doctors rely on the bible of psychiatry, a book called the Diagnostic and Statistical Manual of Mental Disorders. The DSM lists all the mental disorders recognized by the American Psychiatric Association.

The book is also used by insurance companies to decide which treatments they'll pay for, and by courts to help determine insanity or other mental conditions.

The APA is releasing a new draft of the DSM Wednesday, the first major revision since 1994. This latest version of the book, the DSM 5, proposes some significant changes to the following disorders:
Bipolar Disorder
Binge Eating

Related NPR Stories
Asperger's Officially Placed Inside Autism Spectrum Feb. 10, 2010
Diagnosing Mental Disorders: Downplaying Checklists Feb. 10, 2010
Have Your Say On New Psychiatric Manual Feb. 10, 2010
Temple Grandin: A Life Devoted To Animals Jan. 27, 2010
Undiagnosed Asperger's Leads To 'Life As An Outsider' Oct. 13, 2009
Studies Suggest Higher Autism Rates Oct. 6, 2009
Asperger Syndrome Explained Feb. 13, 2007

***Don't forget to check this article out too!***
(I don't want to take up space posting every artilce in it's entirety but make sure to always check out my links!)

I went searching on npr.com for the DSM-V artilce and found another article similar to the one in the previous post about jobs for Autistic people.

For Some Jobs, Asperger's Syndrome Can Be An Asset

Links from my brother

Two interesting articles my brother sent me. Gotta love it when a family member takes interest:)

The AQ Test


My brother scored a 29 and I scored a 32. Interesting...

Here is an article that mentions the test article.

Tech Fields a Haven For Some


Tuesday, February 9, 2010

All good with Joey's school

I'm happy to say that going to the teacher instead of jumping to the principal was beneficial for all. I approached the teacher first because I didn't want her to think I was going over her head. She appreciated that. She got back to me the next day and advised me that the principal said it was ok for me to accompany Joey on all trips, even if, sometimes, I will have to provide my own transportation.

Future crisis avoided...I hope.


Last week, I was selected to help develop the website, www.WhatIsAutism.com (www.WhatIsAutism.info). I became in contact with John LeSieur, creater of the zac browser, many months ago through Facebook. He came up with this great idea for a website and I'm glad to be a part of it!

I am beginning work on it today.

Sunday, February 7, 2010

Did my son's school violate section 504?

I'm wondering...did my son's school violate section 504 of the Rehabilitation Act of 1973. Research it if you haven't heard of it. I'm so glad I did before my son's parent/teacher conference on Thursday because now I am going to have it written in his IEP that I must accompany him on all his field trips.

I was so excited for Joey to go on his farm trip, probably more excited than him. As soon as it came out that they needed volunteers, my name was in the bucket. I asked everyday if the 4 volunteers had been selected. I'm sure I became a little annoying. I kept being told "not yet." I voiced my concern for Joey being at the farm with no direct supervision. I was concerned because in the past, he has attempted to kick the animals. I was also concerned because he has a tendency to wander off and gets easily confused as to where he is. His teacher spoke to the other teacher, who I guess went on the trip before or who coordinated the trip, and she told me that he would have no access to the animals.

So, I continued to wait to see if my name was picked from the volunteer bucket. I was then told by the teacher that there would be no parent volunteers on the field trip. The next day, I was told that she felt bad she couldn't pick me. Two days later, on the day of the field trip, I see that all the same parents from the last trip are volunteering plus one new one, who I assume was my replacement. I should have opened my mouth then but they were all busy trying to get the kids ready for the trip.

The day before, Joey had a bad allergic reaction to something he touched...we're assuming the soil they were playing with for the first time in the classroom...and broke out in large welts all over his legs, butt and some on his face. He was better on field trip day and I didn't want to stop him from going. The teacher and aide knew what had happened. Don't you think I was annoyed to find out that he was picking vegetables!!!

I have decided to have it put in his IEP that I must accompany him on all trips and special events. Yes, I'm THAT mom! I should have opened my mouth before the trip and I will be kicking myself long after the trip is a distant memory to my son.

Great resource:

Saturday, February 6, 2010