Unlock Autism

With autism, parents have extreme concerns about future independence, finances and isolation, compared to more common worries of parents with typically developing children

(Washington, December 16, 2008) — Parents of children with autism are struggling with a host of worries that impact every aspect of their lives, and are particularly fearful that their family will lack the life-long supports needed to address the significant challenges of autism, according to a new study released today by Easter Seals and made possible by MassMutual Financial Group.

Easter Seals’ Living with Autism Study results reveal parents raising children with autism are very concerned about the future independence of their children. In fact, they’re far more concerned than parents of typically developing children — nearly 80 percent say they’re extremely or very concerned about their children’s independence as an adult, compared to only 32 percent of other parents. This is especially true when it comes to their financial independence, quality of life, social and inter-personal connections, and employment and housing opportunities — and with good reason.

Autism is a growing public health crisis, with millions of families desperate for solutions and resources. Easter Seals and others in the autism community are doing their best, but current systems, structures and resources to help people with autism and their families do not adequately meet the growing need, especially for adults with autism.

“The study quantifies what we’ve heard anecdotally over the years,” says Patricia Wright, Ph.D., MPH, Easter Seals national director, autism services. “The one consistent message Easter Seals hears from the families we serve — after the initial apprehension and anxiety of learning their child has autism — is an overwhelming concern about the life-long supports their child with autism may need to be independent.”

Study Shows Parents’ Hope for Independence . . . Financial and Otherwise
The nationwide study provides new insight into the ongoing challenges facing individuals and families living with autism, particularly their concerns about the future. It’s unique in that it closely considers and quantifies the very real concerns of parents of children with autism in relation to parents of typically developing children.

A sampling of the findings:

• Parents of children living with autism are very concerned about their children fitting into society, with very few feeling their children will be able to:
  • Make his or her own life decisions (14% compared to 65% of parents with typically developing children)
  • Have friends in the community (17% compared to 57% of typical parents)
  • Have a spouse or life partner (9% compared to 51% of typical parents)
  • Be valued by their community (18% compared to 50% of typical parents)
  • Participate in recreational activities (20% compared to 50% of typical parents)
• Children with autism also are less likely than their typically developing peers to have bank accounts (37% vs. 55%) and use electronic products like cell phones (9% vs. 41%) or MP3 players (23% vs. 49%) — all tools of mainstream society.
• Many parents of children with autism report they’re “financially drowning,” with concerns for their children’s financial independence seeming to far surpass the worries of typical parents. Seventy-four percent of parents of children with autism fear their children will not have enough financial support after they die, while only 18% of typical parents share this fear.

  They also express extreme financial strains and costs associated with caring for a child with autism, with more than half stating that the cost of caring for my child:

  • Drains my family’s current financial resources (52% compared to 13% of typical parents)
  • Will drain my family’s future finances (50% compared to 10% of typical parents)
  • Will cause me to fall short of cash during retirement (54% compared to 13% of typical parents)
• Key to adult independence is employment, yet only 24% of teenagers with autism have looked for a job, compared to 77% of their typically developing peers. And 76% of parents of children with autism are concerned about their child’s future employment, when only 35% of typical parents share this fear.

“Families living with autism face so many challenges on a daily basis,” says John Chandler, senior vice president and chief marketing officer of MassMutual’s U.S. Insurance Group. “But this study has really brought home for us how much stress they face when it comes to their current financial situation, the future of their child with autism, their other children and their own retirement. Our hundreds of Special Care Planners across the country are in a great position to help make at least this part of their struggle easier.”

As an Easter Seals corporate partner and the study sponsor, MassMutual is committed to serving people living with autism and other disabilities through its exclusive SpecialCareSM program, an innovative solution that gives families with individuals with special needs access to information, specialists, and financial strategies that can help improve their quality of life.

Easter Seals worked with Harris Interactive, and in cooperation with the Autism Society of America, to conduct the Living with Autism Study and survey 1,652 parents of children who have autism and 917 parents of typically developing children about daily life, relationships, independence, education, housing, employment, finances and healthcare.*

Study Findings to Drive Solutions
“Easter Seals strives to make data-based-decisions,” Wright says. “With this study, the disparities that parents of typically developing children and parents of children with autism experience can now be shared via solid numbers.”

Easter Seals will use the study results to raise awareness of and advocate for the life-long services millions of families living with autism desperately need — including school to work transitions, employment support, residential and community support, and financial planning.

“For parents of kids with autism, there are no simple answers,” adds Wright. “There is an urgent need for increased funding and services — especially for adults with autism. Easter Seals wants to help change all of this and make a difference for families living with autism today.”

*Methodology
This Easter Seals’ Living with Autism Study was conducted online within the United States by Harris Interactive on behalf of Easter Seals between June 16 and July 17, 2008 among 1,652 parents of children age 30 and under who have autism and 917 parents of typically developing children age 30 and under. No estimates of theoretical sampling error can be calculated; a full methodology is available.

About Easter Seals
Autism is a lifelong disability that affects the way a person’s brain functions, involving challenges in communication, social skills, and behaviors. While there is no known cause or cure, autism is treatable and people with autism can — and do — lead meaningful lives. Easter Seals is the leading non-profit provider of services for individuals with autism, developmental disabilities, physical disabilities and other special needs. For nearly 90 years, we have been offering help and hope to children and adults living with disabilities, and to the families who love them. Through therapy, training, education and support services, Easter Seals creates life-changing solutions so that people with disabilities can live, learn, work and play. Visit www.easterseals.com or http://www.actforautism.org/ to learn more about autism, find services at an Easter Seals near you, or help change the lives of people living with autism by becoming a donor or volunteer.

About Harris Interactive®
Harris Interactive is a global leader in custom market research. With a long and rich history in multimodal research that is powered by our science and technology, we assist clients in achieving business results. Harris Interactive serves clients globally through our North American, European and Asian offices and a network of independent market research firms. For more information, please visit http://www.harrisinteractive.com/.

About MassMutual Financial Group
MassMutual is a leader in helping people with disabilities and other special needs and their families through its exclusive SpecialCareSM Program, an innovative outreach initiative that provides access to information, specialists, and financial solutions that can help improve the quality of life for people with disabilities and other special needs and their families and caregivers. For more information and resources on autism, go to www.massmutual.com/autism.

MassMutual Financial Group is a marketing name for Massachusetts Mutual Life Insurance Company (MassMutual) and its affiliated companies and sales representatives. MassMutual and its subsidiaries had more than $500 billion in assets under management at year-end 2007. Assets under management include assets and certain external investment funds managed by MassMutual’s subsidiaries. Founded in 1851, MassMutual is a mutually owned financial protection, accumulation and income management company headquartered in Springfield, Mass. MassMutual’s major affiliates include: OppenheimerFunds, Inc.; Babson Capital Management LLC; Baring Asset Management Limited; Cornerstone Real Estate Advisers LLC; The First Mercantile Trust Company; MML Investors Services, Inc., member FINRA and SIPC (http://www.finra.org/ and http://www.sipc.org/); MassMutual International LLC and The MassMutual Trust Company, FSB. MassMutual is on the Internet at http://www.massmutual.com/.

About the Autism Society of America (ASA)
ASA, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. We do this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy. For more information, visit http://www.autism-society.org/.

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What are thre best schools for Autism services? The consensus seems to be larger, mostly Northeast cities but there is no
one resource for researching or selecting the best school options for your child.

I have been searching for the past 4 years now, finally I present a few posts I have found that offer a glimmer of information.

In my experience it comes down to knowing your rights and always have an advocate in the room with you. We live in NY, we found the services
are varied form district to district and have come a long way. In the end though, there is no plan for my child past 6th grade, his options are Boces
or some place far, far away from home.  If you do find a good site, please post it so we can help spread the word.

http://answers.yahoo.com/question/index?qid=20061109092801AAiVpeX

http://www.city-data.com/forum/special-needs-children/300371-best-school-districts-us-autistic-children-4.html

http://www.child-autism-parent-cafe.com/autism-schools.html

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By LIDIA WASOWICZ
UPI Senior Science Writer
SAN FRANCISCO, May 18 (UPI) — There is at least one dilemma that confronts virtually every family with an autistic child, at one point or another: the problem of access to needed services.By federal law, public schools must provide appropriate education for youngsters with autism, beginning at age 3, although programs vary by state and some families opt for private treatment, especially when the child is very young.

However, early intensive therapy is so expensive — averaging $33,000 annually, by some estimates — many districts refuse to foot the bill.

In addition, because of a lack of scientific support for certain interventions, parents often find themselves fighting health insurers to grant coverage or suing school systems to provide home-based instruction.

Some moms and dads take up the therapist’s role themselves or train college students — who come at a fraction of the cost of specialists — for the job.

“There’s very vigorous debate about which methods are optimal in a given situation for a given child, but there is virtually no debate any more about the need for intensive intervention, which means expensive intervention,” said Michael O’Hanlon, a senior fellow at The Brookings Institution, one of the oldest research centers in Washington.

“These treatments are simply unaffordable at the intensity that’s necessary to make them work.” added O’Hanlon, noting the out-of-pocket tab for his child’s therapies tallies up to some $75,000 a year.

Dr. Eileen Costello, a pediatrician on the staff of Boston University School of Medicine, said she finds third-party payers so unyieldingly reluctant to cover the bill, she sometimes has to stretch the rules to circumvent them.

“I call my friends that are developmental and behavioral pediatricians and say … ‘I want this kid to get this service. What code do you think I should use?’ And … it’s sort of sneaky, and you feel like you’re breaking the law, and we probably are,” she told an autism conference.

“But … when you’re in an office with a child, and you know he needs a certain service, you’re going to do whatever you can within reason to get that service for that child. But it shouldn’t have to be that way.”

Severe restrictions on service availability are nullifying the hard-earned gains made in physicians’ ability to diagnose the neurodevelopmental disorder early, said Barbara Firestone, president and chief executive officer of the non-profit autism service center The Help Group, based in Sherman Oaks, Calif.

“(A)ccess to intensive early intervention is still very limited in our country,” she said. “Identification without intervention is an incomplete and seriously flawed policy, very deficient.”

There are glimmers of hope, including some promising federal efforts such as the Combating Autism Act of 2006, signed by President Bush last year, which authorizes close to $1 billion over five years for autism research, screening and early detection and treatment.

The Children’s Health Act of 2000 mandated the establishment of an Interagency Autism Coordinating Committee to organize autism-related research, programs and initiatives.

An expert panel convened under the plan to focus solely on services came up with a laundry list of 50 challenges to developing and delivering care to children with autism.

“(The) five that I think are particularly important: That we don’t have professionals who are trained to deliver these interventions; that we have no consistent funding mechanism for treatment; that it varies tremendously by locality; (that there is) no established standard of care; that … we have multiple agencies that are responsible for the care of children with autism, and those agencies don’t coordinate that care very well (leading) to extraordinary variation in how care is organized, financed and delivered,” said panel member David Mandell, assistant professor of psychiatry at the University of Pennsylvania School of Medicine in Philadelphia.

“(I)t’s a new paradigm for thinking about children with these disorders and how we care for them,” he told an autism conference. “Until things change at the federal level, it’s not going to filter down to states and localities and practices so that these treatments can be delivered in a meaningful way.”

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Some fear practical skills are taking a back seat to the new academic demands of no child left behind By Chris Kenning for The Courier-Journal, Louisville, KY.

Seventeen-year-old Corey Bohn doesn’t know his phone number and can’t make change for a dollar. His Down syndrome makes it a struggle to talk, recognize letters, cross a street, or even let someone know when he’s in pain.
Nevertheless, Corey, who attends Doss High School in Jefferson County, now is expected to learn versions of grade-level academics such as the Pythagorean theorem, the periodic table of elements, principles of cell division and the parts of a novel — all before he leaves high school.

“I just don’t think learning that is important for him,” said Debbie Bohn, Corey’s mother, who is a special-education teacher for Jefferson County Public Schools.

The requirements are the result of revised state standards that took effect this year for thousands of Kentucky students with moderate to severe mental disabilities. The change, required by the federal No Child Left Behind law, more closely linked those students’ curriculum and testing to a selection of modified grade-level material learned by other students.

The idea is to ensure that Kentucky’s disabled students receive the same academic opportunities as everyone else. But teachers, parents, principals and professors complain that the new standards are promoting unrealistic and meaningless lessons that squeeze out instruction in practical life skills and limit the time such students can
spend in regular classrooms.

Although teachers are allowed to reduce the complexity of the concepts and make accommodations, such as allowing students to point to one of three photos to answer a question, some students are growing so frustrated they’re acting out, even hitting themselves, teachers said.

“It’s just horrible,” said University of Kentucky professor John Schuster, who heads the university’s graduate program in special education.

“Imagine you’re a parent of a high-school-aged child with a severe disability, and the state has said you have to learn the first 12 elements of the periodic table, and your child can’t make a sandwich, ride a bus or make a grocery list.”

Requirements defended
Johnnie Grissom, who oversees special education for the Kentucky Department of Education, said the revised standards aren’t harder, just more explicit. Teachers should have been incorporating grade-level concepts from the beginning, she said.
She and other state education officials say teachers can simplify concepts in meaningful ways for students — while melding academics and life-skill lessons — so that nothing is lost.
But that doesn’t always reflect classroom realities, and across the state, teachers are “pulling their hair out,” said Belva Collins, a UK special-education professor.
April DuVal, director of Louisville’s Council on Mental Retardation, said she sees “a breakdown between what Frankfort is saying and school systems are trying to implement, and the sad part is parents are being caught in the middle.”
Even in the hands of the best teachers, some parents still object to the new policy.
“It may be a noble idea, but we have to be realistic,” said Todd Robertson, who believes her 10-year-old son, Nicholas, who can’t communicate well or recognize his name, shouldn’t be learning a “grocery list of knowledge that can be regurgitated.”
Addressing challenges
There are more than 3,200 Kentucky students with functional mental disabilities. Some are “high-functioning,” able to grasp ideas; others communicate by changes in muscle tone or eye glances.
Most leave school with certificates of completion, not diplomas, and often are taught until they reach 21.
Kentucky has long used an “alternate assessment” for students with moderate to severe mental disabilities, consisting of a portfolio of academic and functional skills that were examined once in elementary, middle and high school.
The revised standards, required by No Child Left Behind and the Individuals with Disabilities Education Act, expanded the frequency of testing to mirror that experienced by other students — with at least some subjects tested every year.
They also limited social skills as part of testing and required standards to be better linked to grade-level content in math, reading and other academic subjects.
Teachers say they used to have more leeway to decide what was appropriate for students. Now they must adhere to a list of concepts selected from the state’s required curriculum.
Experts say many states have wrestled with how to link lessons to grade-level concepts without overwhelming special-education students. The resulting standards have varied greatly in level of difficulty.
“It’s something we’re struggling with nationally as a field,” said Linda Van Kuren, spokeswoman for the National Center for Exceptional Child Education in Washington, D.C.
Congress has indicated it might loosen the rules regarding how special-education students are tested when it considers whether to reauthorize No Child Left Behind.
But in the meantime, Kentucky’s revised standards will continue to require elementary students with severe disabilities to learn how to analyze data, identify the plot and setting in a story, measure the perimeter of an object and identify the parts of a plant.
And special-ed students in middle school will try to identify literary devices, determine the area of triangles and classify chemical compounds.
The idea is to teach the key concepts behind those skills, state officials said, and to tie them to practical skills, such as stressing caution about bleach during a lesson on the elements.

Higher expectations
The change is rooted in evolving ideas about how much disabled students are capable of learning.
“Special educators haven’t always held their kids to high standards, and we’ve learned they can learn a heck of a lot more than people thought,” Grissom said.
Nancy Hilton, of Carroll County High School, said she was surprised by some students’ math abilities. She found some students could grasp the ideas behind the Pythagorean theorem, an equation that states the relationship among the sides of a right triangle.
“When I said, ‘There are people who think you can’t do this; let’s prove them wrong,’ they jumped all over that,” she said.
However, in science, students have struggled, she said, and it has cut into time she can spend teaching about money, telling time, cooking or doing laundry.
“A lot of teachers and myself struggle with what purpose is this serving our kids,” she said.
On a recent day in a small Atherton High special-education class, a senior worked on a résumé for a work-transition program. Another student screwed bolts onto a piece of wood to improve dexterity.
Nearby, a teacher’s aide held the hand of a student with cerebral palsy, maneuvering the girl’s hand to push a red button in an elementary-level computer-reading program. The girl didn’t respond to questions or look at the screen, but stared at the ceiling.
Near a “word wall” filled with letters and corresponding words such as “school,” teacher Renee Hollinger sat at a table with two juniors who had periodic tables in front of them — a lesson mandated by the new standards.
“How many electrons in neon?” she asked, after which the students would look on their charts, and then choose one of three slips of paper to provide an answer.
Hollinger noted where certain gases were present in everyday life, but she said later she wasn’t certain they were grasping the larger concept. A lesson on genetics stumbled for the same reason.
“How do you teach algebra to students who don’t know their numbers?” she said.
Sharon Davis, head Jefferson County’s special-education department, said the change is “very different from what we’ve ever done,” but that teachers were being trained and working hard to adapt.
A training issue?
State officials said it’s possible some teachers are taking the standards too literally and failing to simplify them into concepts students can grasp. They said they might redouble efforts to train teachers.
“I guess we’ll have to go out and do more professional development,” Grissom said.
Some parents want their children challenged but believe the new standards should be rethought.
Debbie Bohn said her son, Corey, who is also autistic, can’t attend sports events or go shopping; he communicates by using “yes” or “no.” He has trouble making friends, at times spitting on people to get their attention. Tougher lessons have increased misbehavior and anxiety, she said.
“When the materials are pulled out, he just keeps saying, ‘No. No,’ and turns his head,” she said. “He’s not working on money skills” as much as he used to,” she said.
Corey will likely attend school until he’s 21. Then, Bohn will have to get him into an adult day-care program while she works. She hopes to eventually find a residential care program for him, but the waiting lists are nearly a decade long. “I just want him to be able to function as best he can,” she said. For more information, visit www.upi.com

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What should you expect from our school district when one has a Special Needs child? Especially when your child is in need of specialized instruction and social skill building?

When we were asked what we felt our son needed 3 years ago, I immediately mentioned time with his peers. He learns by example as does everyone else. So why not put him with more typical students now so he can learn some of their behavior- good or bad. It was hinted that some parents might not want their typical child in a classroom with non typical children- what a joke huh? I was basically ignored by the school district and so called experts.

Today my son is serves as a role model in his classroom, with other Special Needs children- all of which are so dear and lovable. He is doing great and making strides but at the age of 6 he still has yet to have any significant time with more typical students. Instead he has been enrolled in a BOCES program largely because our school district is completely understaffed and has yet to realize that the growing need for specialized education, is not going away any time soon. This year, they added another classroom for Special Education, but still rely on the talents of one teacher for the district with dozens of new ASD cases last year alone.

So my son, who is smart, and considered, passive and high functioning is in a classroom, with other special needs children who have a similar lack of social skills, are non-verbal, have downs syndrome or cerebral palsey- again- these kids are awesome, but where is the role model for these kids?

The main issue with my son is the fact that he is non-verbal, so why is he in a classroom with 9 others, 7 of which talk on a very limited basis or not at all? How is it that my son, serves as the role model in his class, when he needs help himself?
It’s a horrible situation to be in, and one I am addressing, once again- this week with the school system. My son deserves better than what the school system is providing.
And although I understand their needs to be a process to this madness, the process should not take precedent over the education and opportunity’s for my son. At least , make the attempt to find parents who understand how their typical child can be a role model for those who are less than fortunate and or just need a little more time to bloom.

In fact, I think I will start an integrated playgroup myself- asap. It’s funny, with Autism, parents seeks help from professionals, but more often than not, the professionals really are the one’s getting the education. Come on professionals, be innovative and lets unlock this terrible condition.

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As you may know already, treating Autism has become big business. Expensive therapy’s, Special diets, Vitamin supplements, ABA, Chelation have become new additions to most affected family’s budgets and vocabulary, yet unlocking the mystery that is Autism seems no closer than it did 1, 5, or even 10 years ago. Parents who receive the dreaded news are caught in the middle of the skeptical medical establishment and new therapy’s which seem to greatly improve some and have no affect at all on others.

If you are affected by Autism or know someone who is you know the burden this can be. You should Know , that although it seems like you are alone at times, you are not!

Today 1 n 166 children born are likely to be diagnosed with Autism. Autism affects everybody from Dan Marino to Doug Flutie to Sylvester Stallone to you and I.

This site is an opportunity to be part of a community involved with finding a Cure for Autism Now.

Share your thoughts and findings on therapy’s you have tried. Challenges and overcoming them. Keeping in mind, that works for me may not work for you or your child.

It would be very helpful to include age of child, brief description of condition – (Non-verbal, Social skills, Fine Motor) and how the therapy worked or didn’t work after utilizing for what length of time would be helpful.

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