daughter gets recognition
April 10, 2009
I’m so proud of my daughter. She’s in kindergarten, one year behind my son who is in 1st grade (they are only 15 months apart in age). She was recognized today at a school function. Neither my daughter nor I could attend the function because of our illness. But my son and husband were there. When my son heard her name called out, he said “hey, why does Ava get that and I don’t”. He always has to have everything she has. His teacher explained that it is something he can work towards. He, of course, believes he has already worked for it and deserves it just as much. It is just interesting that he couldn’t be happy for her, or proud that his sister was called out, etc. I was really disappointed that this flu had to ruin this opportunity for my daughter!
more on the brain
April 9, 2009
Differential effects on white-matter systems in high-functioning autism
and Asperger’s syndrome
McAlonan GM, Cheung C, Cheung V, Wong N, Suckling J, Chua SE.
Psychol Med. 2009 Apr 9:1-9. [temporary link]
http://journals.cambridge.org/action/displayIssue?iid=195388
BACKGROUND: Whether autism spectrum maps onto a spectrum of brain
abnormalities and whether Asperger’s syndrome (ASP) is distinct from
high-functioning autism (HFA) are debated. White-matter maldevelopment
is associated with autism and disconnectivity theories of autism are
compelling. However, it is unknown whether children with ASP and HFA
have distinct white-matter abnormalities.MethodVoxel-based morphometry
mapped white-matter volumes across the whole brain in 91 children.
Thirty-six had autism spectrum disorder. A history of delay in phrase
speech defined half with HFA; those without delay formed the ASP group.
The rest were typically developing children, balanced for age, IQ,
gender, maternal language and ethnicity. White-matter volumes in HFA and
ASP were compared and each contrasted with controls. RESULTS:
White-matter volumes around the basal ganglia were higher in the HFA
group than ASP and higher in both autism groups than controls. Compared
with controls, children with HFA had less frontal and corpus callosal
white matter in the left hemisphere; those with ASP had less frontal and
corpus callosal white matter in the right hemisphere with more white
matter in the left parietal lobe. CONCLUSIONS: HFA involved mainly left
hemisphere white-matter systems; ASP affected predominantly right
hemisphere white-matter systems. The impact of HFA on basal ganglia
white matter was greater than ASP. This implies that aetiological
factors and management options for autism spectrum disorders may be
distinct. History of language acquisition is a potentially valuable
marker to refine our search for causes and treatments in autism spectrum.
PMID: 19356262
Differential effects on white-matter systems in high-functioning
autism and Asperger’s syndrome
G. M. McAlonan, C. Cheung, V. Cheung, N. Wong, J. Suckling and
S. E. Chua
Psychological Medicine
<http://journals.cambridge.org/action/displayJournal?jid=PSM>,
First View article
<http://journals.cambridge.org/action/displayJournal?jid=PSM&volumeId=-1&bVolume=y#loc-1>
Prepare to care for a huge number of autisic adults
April 8, 2009
Prepare to care for a huge number of autisic adults
By Linda Davis The Washington Post
http://www.cmonitor.com/apps/pbcs.dll/article?AID=/20090407/OPINION/904070328/1028/OPINION02
April 07, 2009
Question: What coming social expenditure will cost more than a third of this year’s budget for the Department of Health and Human Services and be larger than the entire current budget of the Energy Department?
Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually in current, non-inflation- adjusted dollars by the end of that period. The number of autistic children expected to need extensive adult services by 2023 - more than 380,000 people - is roughly equal to the population of Minneapolis. If a town were created to house this group of people and their caregivers - for you can’t separate the two - it would exceed the population of all but six U.S. cities. If they formed a state, it would have four electoral votes.
But most of these cognitively impaired citizens don’t vote. Most of them can’t live alone or work in public places. Many can’t even take public transportation by themselves.
Yet as World Autism Awareness Day passed this month, with the wrecking ball swinging at all levels of social services in this devastated economy, the challenges of adult autism continue to be overlooked. Many news reports focus on whether vaccines cause autism, the need for a cure or the education of autistic children. Autistic adults are relegated to the sidelines. Even the Obama administration, which has pledged better care for disabled Americans, including those with autism, has not been specific enough about its plans for those who will probably never be able to live independently or be part of the traditional workforce.
I understand that no one wants to look at a child and imagine the clunky, in-your-face adult he or she will become or think about the stares he or she will induce. When I look at my pudgy 22-year-old son, Randy, still sweet-faced but so obviously disabled, I cannot locate the blond cherub he used to be, gripping his stuffed brown bear. While writing this, I listened to Randy getting into the refrigerator (he’s home again from his supervised job - two mornings a week - because of another problem with the overwhelmed human services provider funded by the Commonwealth of Massachusetts) , and wonder who will love or at least protect him when he ends up in a group home run by an underpaid, overworked staff.
Randy’s father and I are keeping him at home as long as possible, even as I’m battling an incurable cancer. The inadequate state services and perilously thin funding have seriously hampered our ability to work while caring for our son. I feel as though we’re playing Russian roulette with Randy’s future, yet I cling to my gentle son, unwilling to entrust him to a system that grows more fragile than I do.
Randy is just one of hundreds of thousands of autistic adults to whom society pays frighteningly little attention. The price of their care will affect all Americans, not only those who have autistic children. Along with housing, day programs, transportation to those programs or jobs, and higher-than- average medical costs, adults with autism require steady supervision and support.
Consider: A well-behaved, relatively high-functioning person such as my son could manage in an environment that has a ratio of three clients per staff member. But many autistic people require a one-to-one ratio. This is a serious hurdle, not least because of the high turnover rate among those who provide direct care, which stems in part from their low wages. Not everyone is temperamentally suited to this work. People with autism present myriad challenges: They can sometimes be violent, sometimes are self-abusive, suffer psychological meltdowns, or behave in many socially unacceptable ways, to say the least. Women, traditionally cast in the caregiver role, are at risk of greater physical harm when caring for autistic adults than for children.. At expected rates, we will need to find an additional million caregivers, people who must have the right personal qualities to work with autistic individuals but who are willing and able
to work for low wages. This is no small challenge. We not only must train people but also show that we value this work by paying them better.
In 15 years, the cost of care just for the autistic children entering adulthood over that time will be about equal to the current state budget of Tennessee. Meanwhile, services are dangerously strained, and the influx of autistic adults is under way. This country urgently needs to focus on adult autism, new models of care and new sources of funding. Before the looming tidal wave delivers another crushing blow to our economy, we should have a national discussion. It should begin today.
(Linda H. Davis is the author, most recently, of Charles Addams: A Cartoonist’s Life and is president of the nonprofit SAGE Crossing Foundation, formed to create a farmstead for autistic adults. Her husband, Chuck Yanikoski, who is treasurer of SAGE, contributed to this piece..)
what a great story
April 7, 2009
How 1 Young Man (with Autism & Down Syndrome, and non-verbal) Runs a Business
http://news.yahoo.com/s/usnews/20090403/ts_usnews/how1autisticyoungmanrunsabusiness
By Nancy Shute Nancy Shute Fri Apr 3, 2009
Joe Steffy is off to Overland Park, Kan., this week to do a PowerPoint presentation on his business, Poppin’ Joe’s Kettle Korn (http://www.poppinjoes.com/about_us). He’s a 23-year-old small-business man with a goal of $100,000 in sales by 2012. Joe also has autism and Down syndrome and is nonverbal. When he gives his talk, he will push buttons on an augmentative speech device to deliver the words. His audience will be parents who fervently hope their own special-needs children will be able to work, too.
Joe’s parents, Ray and Janet, of Louisburg, Kan., didn’t agree with the assessment of the school district in which they lived previously, which had said Joe would never be able to work or live independently. “I’m one who can easily get ticked off,” says Ray. “That ticked me off. We saw more in Joe than that. We set out to prove to the school that he had capabilities.” They came across kettle corn while on a trip to Alaska and realized that all that popping, scooping, and serving suited Joe’s love of work.
The path to Joe Steffy’s success was not an easy one; Ray Steffy worked closely with Dave Hammis, an advocate for self-employment for people with disabilities in Middletown, Ohio, who trains business owners, government employees, and parents on how to make use of state and federal programs. The Steffys wrote up a business plan and helped Joe secure $25,000 in grants from programs like Social Security Administration’s Plan to Achieve Self-Support program (PASS).
In 2005, Poppin’ Joe’s Kettle Korn was born. Sales have grown from $16,000 in 2005 to $50,000 in 2008, both from selling at festivals and from delivering popcorn to local outlets. Joe has five part-time employees, and his parents help out with driving and other tasks. “Pop and everyone that works with him knows whatever Joe wants to do you let him do, because he’s the boss,” Ray says. “If he wants to pop, he’ll shove Dad out of the way and pop.”
If the business stays on track, it should be grossing more than $100,000 in three years, and the Steffys are seeking a business partner who can work with Joe to manage the business. Joe is no longer on Social Security disability payments; instead, he pays state sales tax and state and federal income tax. He rents his own house and is helped by caregivers who are paid by a state program.
“It’s been hard work, from the standpoint of physical work,” says Ray Steffy, who is 67. “But a parent with a child like Joe has a choice. You can either kick in and do this kind of thing, or you can sit and fret emotionally with the amount of energy, worrying about what’s going to happen to them.”
The payoff for that effort, as far as the Steffys are concerned, has been priceless. They see their son make a local popcorn delivery, accept payment, fold it, and put it in his pocket. When he walks out, his dad says, Joe looks 3 inches taller than when he walked in.
Humph!
April 6, 2009
My daughter has the flu and we were up most of the night. So, when my son’s alarm clock went off this morning, I was awake. I heard the alarm radio go off. The next thing I hear is this loud “Humph”. My son has this way of “humph’ing” at people or things that he gets upset at. Beats hitting! The next thing, I hear him turn the alarm off and come stomping down the hallway saying “I am NOT going to go to school TODAY”. Later he told me he wasn’t “humph’ing” at his alarm clock - god forbid if he ever got upset at a piece of electronics! He said he was “humph’ing” at the fact that he had to go to school. Even though it took a lot of coaxing and bribing to get him off to school today (especially since my daughter was staying home with the flu - and, by the way, my son repeatedly said he would much rather stay home with the flu than go to school - I think he meant it!), it was pretty funny to hear the first sound out of him this morning being a HUMPH!
where was the president and first lady on world autism awareness day?
April 5, 2009
http://www.worldautismawarenessday.org/atf/cf/%7B2DB64348-B833-4322-837C-8DD9E6DF15EE%7D/president%20obama%20waad%20statement.pdf
this is president obama’s statement on world autism awareness day. you can see on the official website that many first ladies provided a video statement. where is michelle obama? i would have liked to see a lot more from them. remember, this isn’t just a “cause”, this is 1 in 150 of today’s children, this is an epidemic of extreme proportion.
Yoko Ono art
April 4, 2009
http://www.charitybuzz.com/area.do?id=939
Yoko Ono’s Promise Project
Yoko Ono, acclaimed artist and Golden Lion Award Winner for lifetime achievement, will unveil her original mural titled PROMISE to be auctioned off in support of Autism Speaks and the 2nd Annual World Autism Awareness Day (WAAD) on April 2 at the United Nations. The unveiling will be sponsored by Chilean Ambassador to the UN Heraldo Muñoz and the Chilean Mission and supported by Autism Speaks, the world’s largest autism science and advocacy organization.
Passed unanimously by the UN General Assembly in 2007 World Autism Awareness Day is only one of three health issues to be recognized by the UN with its own “day”. WAAD activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of people with autism, and features community events around the world where individuals with autism are warmly welcomed and embraced.
150 strollers in Central Park
April 3, 2009
http://www.nydailynews.com/lifestyle/health/2009/04/02/2009-04-02_world_autism_day_raises_awareness_but_wh.html
World Autism Day raises awareness, but what causes the disorder still eludes researchers
Updated Thursday, April 2nd 2009, 5:07 PM
Rosier/News
Activists marked World Autism Day in New York by leaving 150 strollers near the Central Park bandshell to raise awareness of the disorder. Autism is estimated to afflict one in 150 children.
It’s a devastating diagnosis for any parent to hear. And more parents than ever are learning that their child has autism: it now afflicts about 1 in 150 children, according to the Centers for Disease Control. It’s four times more prevalent in boys than in girls.
As World Autism Awareness Day - designated by the United Nations as Tuesday, April 2 - winds down, the spotlight is on why the disorder is on the increase, why the causes still elude researchers, and why early diagnosis is so important.
“We know autism is on the rise and we know there is a genetic predisposition,” says Dr. Cathy Pratt, board chairperson for the Autism Society of America (www.autism-society.org). “The controversy is over what is the trigger that actually causes it to occur. A lot of research is on what triggers it. I think that we will find that there are multiple causes. It’s not like a broken arm.”
A diagnosis of autism can be a parent’s greatest fear, says Dr. Pio Andreotti, Psy. D., a neuropsychologist at Long Island College Hospital. “Autism seems to strike without any warning,” he says. “A parent goes through a typical pregnancy and a typical delivery and then finds out two years later that their child is not who they thought she was. The parent’s world changes and they have to adapt to what those changes are.”
With no genetic testing or blood testing available, it can seem like a long wait to see if a child will be autistic or not. Early treatment makes a big difference, says Andreotti, and there are varying degrees of severity of autism.
Diagnosis focuses on a variety of behavioral characteristics in the child: challenges in the area of social skills, communication problems, and having a very focused interest or a fixation on certain objects - like ceiling fans or refrigerators, Pratt says.
A diagnosis of autism is typically made at around the age of two, although some researchers claim that they can detect symptoms in babies as young as 10 months, Andreotti says. “A child can have a very mild autistic syndrome and be fairly high functioning or can have profound autism.”
Risk factors that may increase the chances of having an autistic child include parental age. “The older the parents are at the time of conception, the more likely that the child will have autism,” says Andreotti. “If you already have a child with autism, you’re at a higher risk of having aother child with autism. And there’s also a high correlation between autism and seizure disorders.”
Fortunately, early intervention (before the age of three) can make a huge impact, Pratt says, and parents need support, too.
“Regardless of the cause of autism, what we have to remember is that these are very challenging children and that the parents can have an incredibly challenging time living with them,” Pratt says. “Clearly there is a real need for services.”
world autism day
April 2, 2009
I’m so proud there is a day. And this day gets a lot of attention. Attention that it deserves. It’s only attention like this that is going to make a difference for people with autism around the world. And there is so much to be done! So, let’s all get to work everyone!
did you know about digi pen?
April 1, 2009
I am a member of the Seattle 4 Rotary. Today the CEO of Digi Pen was our guest speaker. He was great. Interesting guy.
Some of you might know of my interest in finding a way to provide our young science-interested kids with access to all of the brilliant scientists, engineers, etc. here in the Seattle area. I mean we have Boeing, Microsoft, Nintendo/Digi Pen, Fred Hutch Cancer Research Center (with 3 nobel prize winners), Allen Brain Atlas, and a host of others. I have this son who is interested in all of these things and yet how do I give him access. He certainly isn’t learning about circuitry and brain science in a first grade classroom. But I really want to continue to encourage his interests.
In first grade, their extracurriculars are soccer, track, chess, you know the usual stuff. He isn’t interested in sports. He can’t sit still long enough for chess, not that he would be interested in it anyway unless it was electrical and mechanically moving chess. He comes home from school and builds circuits or takes apart our electronics. He takes out the blender and makes up all kinds of crazy concoctions - whatever he can find in the kitchen, or in the back yard. He finds ways to hook up every piece of electronic equipment in our house.
So, I am on a mission to find a way to set up some type of school partnering program, or a summer program, or after school mentoring program for young kids to have access to all of the brilliant scientists in our community. Would love ideas.
Thank you Digi Pen for being such a good role model. I would love to see Boeing, Microsoft and others set up similar Universities.
