Archive for the ‘Resources for Parents’

April Youth Sub-Committee Meeting Notes

May 03, 2010 By: admin Category: Resources for Parents, Youth Sub-Committee

April Autism Youth Sub Committee Meeting Notes
* Our meeting was held on Wednesday April 27, 2010 at the California Auto Association Building on Smith Ranch Road in San Rafael
* Barry Benda from Lifehouse Agency was able to attend

• Karen reviewed the following: Karen had made connection with the Marin County Sheriffs Department, Sergeant Josh Todt and Sergeant Debra D. Barry
• Marin County Sheriff’s Office Professional Standards Unit, 3501 Civic Center Drive, Room 145
San Rafael, CA 94903, Desk 415.499.7836, Fax 415.507.4126
• In regards to the ASD training DVD. Debra shared that the DVD had arrived and was being shared with agencies throughout Marin. Karen asked Debra for more specific information on what agencies and when the DVD had been used for training. Debra will get back to Karen. Karen offered MAC support to attend trainings and answer officers’ questions on ASD.
• Karen shared with Barry that Mike Gardner reported that the MCOE teachers would be going through SCRETS training and at this time did not feel a need for additional training from MAC.
• Karen shared with Barry that the medical practitioner letter and flyer were complete and the next step was to send our resource list out to them. Katrina from MAC will be doing this next step.

The meeting was closed by 9:45 as no other committee members were able to attend this meeting.

Final Meeting of the year is schedule for May 25th at 9:30 am

Karen Kaplan
Autism Youth Sub Committee Chair
karensupportsu@comcast.net
415-497-3751

California Autism Task Force Develops Draft Recommendations

April 22, 2010 By: admin Category: Advocacy, Early Years Sub-Committee, Resources for Parents, Resources for Professionals, Transition Sub-Committee, Youth Sub-Committee

On April 13, the California Senate Select Committee on Autism and Related Disorders presented the preliminary draft recommendations from the sub-committees on early identification, insurance, housing, and employment. Click on the issue areas below to view the draft recommendations:
Early Identification
Insurance
Housing
Employment

Program helps Young Adults with ASD Prepare for Work

April 20, 2010 By: admin Category: Resources for Parents, Resources for Professionals, Transition Sub-Committee

The Thinkers: Duquesne professor working to help autistic people work
Monday, March 29, 2010
By Mark Roth, Pittsburgh Post-Gazette
Lake Fong/Post-GazetteAnn X. Huang, a Duquesne University professor, runs a program that helps prepare people with autism for work.A young man was cleaning an elevator at a local hotel recently when some guests entered the car.

“Say hi,” said a young woman standing near the man. She wasn’t being rude; she was just doing her job. The woman was a Duquesne University student who was assigned to mentor the young man, who had a high-functioning form of autism and was working at his first full-time employment.

Encounters like this one are a key part of the program devised by Duquesne special education professor Ann X. Huang to help people with autism succeed in the workplace.

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Ann X. Huang
Position: Assistant professor of special education, Duquesne University.
Age: 32
Residence: Ross
Education: Ph.D., applied behavioral analysis, Tennessee Tech University
Professional honors: Association for Behavioral Analysis presentation grant award, 2007; presidential scholarship award, Duquesne University, 2009
Publications: Seven papers in peer-reviewed journals

——————————————————————————–
Young men with Asperger syndrome or other forms of high-functioning autism, a neurobiological disorder that affects communication skills, can often learn the skills of a job fairly easily. What they struggle with is how to behave with people.

Dr. Huang’s solution? Pair them with mentors who will stay with them throughout the work shift and coach them on how to interact with bosses, co-workers and customers.

After getting a pilot grant two years ago from the state Department of Public Welfare, Dr. Huang has now received a $25,000 grant from the advocacy group Autism Speaks to extend the program to Wesley Spectrum Services, a local agency that works with the families of developmentally disabled children.

Although the program’s scope is modest — it will be able to help only a few children to start with — it is tackling one of the most critical and overlooked problems in the world of autism.

As children on the autism spectrum enter their teens, even those who can finish college often have extreme difficulty finding work. The unemployment rate for people with autism is estimated at 80 percent in America, and of the 20 percent who work, most are in part-time jobs, says Peter Bell, executive vice president of programs and services at Autism Speaks.

The challenge is so great that a new group called Advancing Futures for Adults with Autism was begun last year. At its national town hall meeting in November, Mr. Bell, speaking of his own teenage son, posed the questions that worry many families of young adults with autism.

“What happens when the school bus stops coming to our house? Where will he live? Will he have a job? Who will take care of him when we are not around? These questions weigh heavily on us.”

Dr. Huang said the answers to those questions do not necessarily lie with teaching such children how to perform a job, but how to treat others while they’re on the job.

“Some of them do not greet people mutually. People will say hi, but they will respond with no eye contact, or they might not respond at all,” she said.

“On other occasions, they might be too nice to other people — they don’t realize they should keep a certain distance. Some of them are very sensitive to sensory stimuli, so if they like the smell of someone else’s shampoo they might come too close to the other person and that might offend some people or scare them.”

One good way to meet those challenges, she said, is to pair the autistic workers, most of them young men, with college-age peers who understand all those unwritten rules of social engagement.

In her pilot programs, Dr. Huang has tended to use young women as mentors, because the autistic men respond better to them. But for certain situations, such as when the men are in a public setting, she prefers male mentors.

One example: on a public bus trip, an autistic man was very attracted to a young woman who had boarded the bus. “We say to these young men, ‘If you see a woman, you should keep a certain distance from her and you should not stare at her all the time.’ A lot of autistic people have good memories so they can remember those rules, but it is sometimes hard for them to generalize the behavior.”

In this case, she said, the young man told his mentor that even though he knew the rules, he still wanted to sit near the young woman, but his male mentor physically pulled him back.

Dr. Huang’s pilot program worked with the St. Anthony School Programs, a Catholic system for children with Down syndrome, autism and other disabilities. She is now trying to extend the mentoring system to Wesley Spectrum Services, which works with more than 7,000 children across Western Pennsylvania.

So far, the autistic students have worked at Duquesne’s cafeteria, law school and copying center, as well as at the Pittsburgh Marriott City Center housekeeping program and a few other work sites.

Finding willing employers is crucial, she said, but even when she can do that, there is sometimes still the issue of insensitive co-workers.

She went to observe one of her students at a local grocery store recently, where he was bagging at a checkout counter. The boy has Down syndrome and autism, she said, so he is both friendly and tends to repeat himself.

“He was saying, ‘It’s fun outside, do you like it?’ He has good verbal communication and he was trying to greet people, but the problem is he repeats things again and again and again.” It clearly irritated the cashier, said Dr. Huang, who did not let on that she knew the young man.

“The cashier was not very happy about the way he was acting. I had bought some eggs, and she asked if I wanted her to put my eggs in a bag, because ‘I don’t want him to ruin your eggs.’ I said ‘No, no, no, he’s doing fine.’

“He was doing his job very well. The only part that embarrassed the cashier was that he was very friendly and didn’t know the boundaries.”

Dr. Huang never expected to end up doing this kind of work. When she was 24, she was a successful young English teacher at an elite school in Beijing for the children of wealthy parents. Then, she happened to visit a school for developmentally disabled children, and her life changed.

“The school I was teaching in was so different from this one, and it totally changed my mind. In Chinese society, we always think out of sight, out of mind. But I decided we cannot ignore them.”

She applied for a graduate program at Tennessee Tech University, where her mentor specialized in autism, and joined the Duquesne faculty after getting her Ph.D.

Her only frustration has been that her funds for the mentoring program have been so limited. “If other agencies would like to replicate this program or other school districts were interested in developing such a program, I’d be more than happy to help them develop it.

“I hate to refuse parents. They ask, ‘How can we get our kids into your program?’ and too often, I have to say ‘I’m so sorry, the money is limited.’ ”

Mark Roth: mroth@post-gazette.com or 412-263-1130.
First published on March 29, 2010 at 12:00 am

Read more: http://www.post-gazette.com/pg/10088/1046417-114.stm#ixzz0ler5P81m

Pacific Sun Article Focuses on MAC Members

April 13, 2010 By: admin Category: Resources for Parents, Transition Sub-Committee, Youth Sub-Committee

Check out this recent article in the Pacific Sun about autism and services for teens and adults (posted on the Autistry Studios Blog). The article features many of the Marin Autism Collaborative’s members!

Helping Students Going to a New School

April 07, 2010 By: admin Category: Resources for Parents, Transition Sub-Committee, Youth Sub-Committee

At this time of year some of our children are finishing up at one particular school site.

They might be going on to a new school due to a move, a change from elementary to middle school or middle school to high school.

They may be going to a new private school.

Here is a resource that may help.

Please feel free to pass on to others

Karen Kaplan
karensupportsu@comcast.net

http://www.asperger.net/bookstore_9054.htm

My New School: A Workbook to Help Students Transition to a New School
by Melissa L. Trautman, Ms. Ed.

Resource for the Transition Years

April 07, 2010 By: admin Category: Resources for Parents, Transition Sub-Committee

Check out this web site http://thinkcollege.net/ and pass on to families in the transition years and teachers at high schools

Karen Kaplan
Karensupportsu@comcast.net

The eight University Centers of Excellence in Developmental Disabilities (UCEDD) that were awarded grants to support statewide strategic planning to support students with intellectual disabilities to go to college have been hard at work. Debra Hart and Cate Weir of Think College have been to the following states in March offering training and technical assistance to their efforts:

• The Florida Center for Inclusive Communities at the University of South Florida in Tampa hosted a very successful statewide meeting to kick off their statewide planning efforts.
• The Strong Center for Developmental Disabilities at the University of Rochester (NY) hosted regional meetings in Rochester and in Albany.
• The Partnership for People with Disabilities at the Virginia Commonwealth University held a strategic planning meeting for their statewide team in Richmond.
• The Center on Disability and Community Inclusion at the University of Vermont held a statewide planning summit.
• The North Dakota Center for Persons with Disabilities at the University of North Dakota Minot kicked off their statewide work. The meeting was featured that evening on the Channel 10 News in Minot.
Plans are underway for later this spring at the remaining grant-funded UCEDDs in Nevada, Mississippi, and New Mexico. “It is very exciting to see the level of enthusiasm and commitment in each of these states,” said Cate Weir, “and to begin to look forward to the increased opportunities for students with intellectual and developmental disabilities that will result.”
A Book Worth Checking Out
Think College: Postsecondary Education Options For Students with Intellectual Disabilities
By Meg Grigal and Debra Hart

Think College: Postsecondary Education Options for Students with Intellectual Disabilities seeks to uncover the bigger picture of postsecondary (PSE) options, before, during and after a successful transition to college for those students with intellectual disabilities (ID). The authors address how to understand the philosophical and practical purposes of bringing support for PSE options for individuals with ID. Three models for PSE are discussed within the book: inclusive individual support approach, the mixed hybrid approach and substantially separate options. Think College also provides suggestions in order to overcome the typical challenges these students will face within PSE and give effective person centered transition services for high school students as well as support students as they manage a positive PSE experience.

Think College seeks to address the future possibilities which lie within postsecondary education for students with intellectual disabilities. It prepares students and families for the sometimes difficult path to PSE, but illustrates through examples, case studies, research and various resources how to navigate the system and the lessons which have been learned over the years. To order, visit http://www.brookespublishing.com/store/books/grigal-69179/index.htm

Reflections on the Marin Autism Lecture by Dr. McManmon

April 07, 2010 By: admin Category: Resources for Parents, Resources for Professionals, Transition Sub-Committee

What a wonderful opportunity to learn from Dr. McManmon we had yesterday as part of the Marin Autism Lecture Series!

Dr. McManmon presentation was entitled “Understanding the Post-Secondary Needs of Students with ASD.” However, he really covered so much more — he was teaching us, through his personal experience as a person with Asperger’s and his professional experience and the Executive Director of the College Internship Program, how to help our children and young adults to acquire the life skills necessary to succeed in their lives as whole people.

For me, the highlights included:
1. Of all of the challenges facing students with ASD, the key issue is cognitive flexibility (above social understanding, executive functioning, sensory, etc.) because working on this will open the door to change.
2. As students move into high school and later college, they need to be becoming independent from their parents’ advocacy and be able to self-advocate. This means having an acceptance and understanding of their diagnosis and what that means, knowing their strengths and weaknesses, understanding their learning profile, and having the ability to talk about this and self-disclose and self-advocate.
3. Along the way, parents need to enable their children to have experiences that mimic the future — community service opportunities, small jobs or internships — to enable them to learn what they like and don’t like.
4. Young adults need strategies for personal organization to enable them to live independently — they need to know how to do their laundry, take care of themselves, etc. This applies to all areas life — strategies for independent living, strategies for academics, strategies for work. Knowing their needs makes this possible — they must first know themselves.

Thank you!

Health Care Reform and ASD

March 23, 2010 By: admin Category: Advocacy, Resources for Parents, Resources for Professionals

The Autism Society of America has put together a summary of how the proposed health care legislation affects individuals with ASD. See their article of health care reform.

Model for Employment for Asperger’s and HFA Adults

March 18, 2010 By: admin Category: Research on Autism, Resources for Parents, Resources for Professionals, Transition Sub-Committee

Take a look at this program near Chicago for developing employment opportunities for adults on the spectrum. http://www.aspiritech.org/

Wall Street Journal Article on Autism

March 09, 2010 By: admin Category: Early Years Sub-Committee, Research on Autism, Resources for Parents, Resources for Professionals, Transition Sub-Committee, Youth Sub-Committee

—– Forwarded Message —-

http://online.wsj.com/article/SB20001424052748703422904575039351632663996.html

Why is a child born in northwest Los Angeles four times as likely to be diagnosed with autism as a child born elsewhere in California?

Medical experts have pondered for years why autism rates have soared nationwide, and why the disorder appears to be much more prevalent in certain communities than in others. Now, some recent studies that zero in on California may shed some light on these baffling questions.

Researchers from Columbia University, in a study published in the current Journal of Health & Place, identified an area including West Hollywood, Beverly Hills and some less posh neighborhoods that accounted for 3% of the state’s new cases of autism every year from 1993 to 2001, even though it had only 1% of the population.

Another recent study, from the University of California, Davis, published in Autism Research, also found high rates of autism in children born around Los Angeles, as well as nine other California locations. Autism, usually diagnosed before a child is 3 years old, is a developmental disorder characterized by impaired social interaction and communication and repetitive behavior.

Both of the California-based studies suggest that local environmental or social factors are driving the high autism-diagnosis rates. And they conclude that childhood vaccinations—which some people fear is a factor behind rising autism—are not to blame. Otherwise, diagnoses of the disorder would be more evenly dispersed, they say.

The studies also disagree on some points. According to the UC Davis study, greater concentrations of autism occur in communities where parents are highly educated, which could mean they have more awareness of autism and access to treatment. By contrast, the Columbia researchers discount the role of educational levels. They believe that social influences, such as shared information about diagnoses, doctors and services, are largely responsible for the high rates they found in parts of Los Angeles.

In Los Angeles itself, residents have a variety of explanations for the high autism rates, ranging from a family’s affluence and the activity of autism-advocacy groups to past air and water pollution.

James McCracken, a child psychiatrist at the UCLA Center for Autism Research and Treatment, says families often have to fight with state bureaucracies to be deemed eligible for services, and some spend thousands of dollars for private evaluations. “You can see the possibility for inequity according to social advantage or cultural background,” he says.

But Moira Giammatteo, a San Fernando Valley mother with a 12-year-old autistic son, doesn’t believe that affluent, educated parents are gaming the system. “It’s not like people think, ‘get this label and you can get services.’ Nobody wants this diagnosis; most parents are in denial,” she says.

Some of the increase in autism rates in past decades is due to changing definitions. Until the early 1990s, diagnoses of autism were rare and included only children with low I.Q.s, who were deeply withdrawn and had very minimal language skills. In 1994, diagnosticians adopted the term autism spectrum disorder (ASD), which also includes children with impaired social skills but not necessarily severe intellectual disabilities or language delays.

On average, one in 110 American 8-year-olds had an autism spectrum disorder in 2006, an increase of 57% since 2002, according to a December report from the Centers for Disease Control and Prevention. Some parts of the U.S. are seeing much higher rates than others: Metropolitan Phoenix, for example, has twice the prevalence as northern Alabama.

Whether those differences reflect actual higher risk in different regions, differences in awareness among local residents, or simply variations in record keeping is something the CDC is trying to untangle.

“We still don’t know what causes autism, and we don’t know a lot of the underlying factors, so we can’t rule out the possibility that there are differences in the distribution of risk factors.” says Jon Bai, a CDC epidemiologist.

Theories abound to explain the steep increase that has occurred in recent years. Some experts attribute it to genetic changes within families. But others say genetic changes wouldn’t occur so quickly and instead they blame environmental toxins or childhood vaccinations.

Another possible explanation: Greater awareness of the disorder, and programs in some parts of the country that can help children regain skills, may make parents more willing to have their children diagnosed.

“But awareness can only go so far” to explain the rising levels of autism, says Dr. Baio. “We are still identifying more children with autism, in all levels of severity, than ever before, which is why this continues to be a perplexing and urgent concern.”

Around the U.S.

Nine out of every 1,000 8-year-olds were diagnosed with autism spectrum disorder as of 2006. But rates vary widely in the survey areas, located in 11 states, that the CDC monitors. (Prevalence per 1,000):
Alabama 6.0
Arizona 12.1
Colorado 7.5
Florida 4.2
Georgia 10.2
Maryland 9.2
Missouri 12.1
North Carolina 10.4
Pennsylvania 8.4
South Carolina 8.6
Wisconsin 7.6

Source: CDC’s Autism and Developmental Disabilities Monitoring Network

In California, children with autism or ASD must be “substantially developmentally disabled” to qualify for services from the state’s Department of Developmental Services (DDS). The two recent studies used data from the DDS in their research. The studies looked at where the children with autism were born, not where they were diagnosed, so that their findings wouldn’t be skewed by families moving into the areas.

As part of their work, the Columbia researchers constructed a “SimCity map of California,” referring to the city-building simulation game, says Peter Bearman, the lead investigator. They assembled data pinpointing not just where children with autism were born and diagnosed but also all the parks, day-care centers, doctors’ offices, autism-advocacy groups and other gathering places.

The result: significantly higher occurrences of autism in a large area of Los Angeles stretching from Santa Monica in the west to beyond Burbank in the east, and from El Segundo in the south to the San Fernando Valley in the north. The epicenter of the autism cluster: areas around Hollywood.

Dr. Bearman says he believes social influences are the leading cause for the high autism rates in Los Angeles, although the researchers continue to examine environmental issues.

Other studies have shown that older parents run a greater risk of having an autistic child. But when the Columbia researchers adjusted the Los Angeles cluster to factor out parental age, the higher levels remained. Dr. Bearman says he believes the high levels will also remain after the data are adjusted for education levels, socio-economic status and other demographic characteristics in future studies.

In addition to parts of Los Angeles, the UC Davis study located clusters around Santa Ana, San Diego, San Francisco, Santa Clara, Fresno and Stockton where children had at least a 70% greater chance of being diagnosed with autism than in surrounding areas.

The Davis researchers believe their findings can be explained solely by parents’ educational levels—by adjusting the data for educational levels, the discrepancies in autism rates virtually disappeared.

“There are many ways that you can see that a highly educated person will be more successful at getting the diagnosis,” says Karla Van Meter, the study’s lead author. “If I’m more educated, I might have different expectations for my child,” she says.

Corrections & Amplifications
An earlier version of this article incorrectly spelled Jon Baio’s surname.

Write to Melinda Beck at HealthJournal@wsj.com

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