U.S. pediatricians urge more autism screening

Updated Mon. Oct. 29 2007 8:01 PM ET

CTV.ca News Staff

Children should be screened for autism twice by the time they are two years old to look for symptoms such as babies who don't babble at nine months and one-year-olds who don't point to toys.

That's the advice from the American Academy of Pediatrics in two reports the group presented at its annual meeting in San Francisco Monday.

The advice is meant to help both parents and doctors spot autism sooner so that therapy can begin as soon as possible. While there is no cure for autism, experts say early therapy can lessen its severity.

The reports list numerous warning signs that are absolute indications for immediate evaluation. They include:

• no babbling or pointing or other gesture by 12 months;
• no single words by 16 months;
• no two-word spontaneous phrases by 24 months;
• loss of language or social skills at any age.

Earlier, subtle signs that that could lead to earlier diagnosis include:

• not turning when the parent says the baby's name;
• not turning to look when the parent points says, "Look at..." and not pointing themselves to show parents an interesting object or event;
• lack of back and forth babbling;
• smiling late; and
• failure to make eye contact with people.

The doctors also want to warn parents that not all children who display a few of the symptoms are autistic. They note that just because a child likes to line up toy cars or likes to repeatedly stroke a favourite stuffed animal doesn't mean they have the developmental disorder - especially if they're also interacting socially and also communicating well.

The American Academy of Pediatrics first issued guidelines about autism in 2001. A 2006 policy statement urged autism screening for all children at their regular doctor visits at age 18 months and 24 months.

The new reports advise intervention as soon as an autism diagnosis is seriously considered, rather than deferring until a definitive diagnosis is made.

Recommended treatment should include at least 25 hours a week of intensive behavior-based therapy, including educational activities and speech therapy, according to the reports.

The Academy lists several specific approaches that have been shown to help. They also list many that have not, including special diets and alternative treatments endorsed by celebrities, saying there's no proof those work.

Meanwhile, Canadian pediatricians are applauding the recommendations.

"I think it is absolutely essential to be watching children for early signs of autism so I think it is an excellent recommendation," says Dr. Wendy Roberts, the director of the Child Development Centre at Toronto's Hospital for Sick Children. "we are trying to teach all family physicians and pediatricians to look very carefully for the early signs of autism."

But autism experts note that many parents in Canada are already waiting years for therapy. They say screening earlier will only uncover more children who will need treatment.

"What are we going to do with all these children?" wonders Dr. Derrick MacFabe, director of the Kilee Patchell-Evans Autism Research Group at the University of Western Ontario. "How are we going to help them?"

The Autism Society of Canada estimates that one in every 165 children is born with an Autism Spectrum Disorder and that there are approximately 200,000 Canadians living with an ASD.

The cause or causes of autism are still unknown. Many possible causes are being investigated, such as genetics, environmental factors, viral infections and immune responses and deficiencies.

Saskatchewan Autism Training and Interest Events from September 2007 to June 2008

Sept. 12, 13, 14: “Getting Back to Basics ” 8^th Annual Gentle Teaching International Conference in Saskatoon for everyone.  Presented by SK Alternative Initiatives and SK Association for Community Living at the Sheraton Cavalier Hotel, Saskatoon.  Presenter: John McGee.  Gentle Teaching is a non-punitive approach to caring for people of all ages with disabilities that enables us to entreat others, through our words, hands, eyes and presence, to become meaningfully engaged within their community. Charge for attending.
 http://www.autismservices.ca/PDF-FormsDocuments/Summer07/GTI2007Brochure.pdf

Oct. 4, 5: “Exploring Autism: What’s New, What’s Tried, What’s True” in Lloydminster for parents, teachers, interventionists and administrators.  Presented by SK Health & SK Learning.  Presenters: Rupal Bonli and Bonnie Quiring Gallen at Midwest Family Connections 4910 50^th Street, Lloydminster.    This workshop will teach you how to take care of yourself so you can, in turn take care of your child, your students or your patients, depending on your role; help you prepare and deliver a terrific program at home or at school; introduce the newest strategies for working with children with ASD; explore the most recent research; build your confidence.  Free of Charge, with max. 40 participants. 

October 11, 12: “Exploring Autism: What’s New, What’s Tried, What’s True” in Regina for parents, teachers, interventionists and administrators.  Presented by SK Health & SK Learning.  Presenters: Rupal Bonli and Bonnie Quiring Gallen at SK Learning, 4635 Wascana Parkway, Regina.    This workshop will teach you how to take care of yourself so you can, in turn take care of your child, your students or your patients, depending on your role; help you prepare and deliver a terrific program at home or at school; introduce the newest strategies for working with children with ASD; explore the most recent research; build your confidence.  Free of Charge, with max. 40 participants.

October 11, 12: MAPS & PATH Creative Facilitation workshop in Saskatoon for everyone.  Presented by SK Association for Community Living.  Facilitators: John Coflin and Faith Savarese at Queen’s House of Retreat in Saskatoon. Charge for attending; registration includes “All my Life’s a Circle”.  http://www.autismservices.ca/PDF-FormsDocuments/Fall07/MAPS&PATH%20Workshp-Fall07.pdf

Oct. 12, 13: Autism Awareness Conference in Saskatoon for interested persons.  Presented by the Autism Awareness Centre at TCU Place, 35 - 22 Street East, Saskatoon.  Presenters: REBECCA MOYES - Addressing Social and Behavioural Concerns For Children With Autism/Asperger Syndrome in the School, Home and Community; JANET CASALI - Introduction to Developing Communication Skills For Verbal and Non-Verbal Individuals with ASD.  Charge for parents and professionals.  http://www.autismawarenesscentre.org/conferences/3.html

Oct. 18,19: “Exploring Autism: What’s New, What’s Tried, What’s True” in Saskatoon for parents, teachers, interventionists and administrators.  Presented by SK Health & SK Learning.  Presenters: Rupal Bonli and Bonnie Quiring Gallen at Gathercole Auditorium, 310-21^st Street East, Saskatoon.   This workshop will teach you how to take care of yourself so you can, in turn take care of your child, your students or your patients, depending on your role; help you prepare and deliver a terrific program at home or at school; introduce the newest strategies for working with children with ASD; explore the most recent research; build your confidence.  Free of Charge, with max. 40 participants.

Oct. 25, 26: “Exploring Autism: What’s New, What’s Tried, What’s True” in Yorkton  for parents, teachers, interventionists and administrators.  Presented by SK Health & SK Learning.  Presenters: Rupal Bonli and Bonnie Quiring Gallen at Yorkton Regional High School, 150 Gladstone, Yorkton.   This workshop will teach you how to take care of yourself so you can, in turn take care of your child, your students or your patients, depending on your role; help you prepare and deliver a terrific program at home or at school; introduce the newest strategies for working with children with ASD; explore the most recent research; build your confidence.  Free of Charge, with max. 40 participants.

Oct. 26, 27: “The Faces of Autism” in Meadow Lake for individuals, parents, educators, therapists, professionals, child care staff and interested persons.  Organized by the Northwest School Division (with assistance from SK Health, Meadow Lake Tribal Council & Prairie North Regional Health Authority).  Presenters: Ron Leaf (Applied Behavior Analysis <ABA> training – each attendee will receive a copy of his ABA curriculum “A Work in Progress”), Barbara Doyle (Changing Society’s View of People with ASD), guest Brent Butt.  Free registration and travel/accommodation reimbursement for people with ASD and their parents/guardians; charge for professionals. www.nwsd.ca/foa/

Nov. 5: “Becoming a Behavioral Detective: Understanding, Surviving and Supporting Complex Behaviors” in Regina for parents, teachers, caregivers, workers and professionals in the education and mental health field.  Presenter: Kim Barthel, OT.  This introductory workshop is designed to assist people to support children with behavioral challenges and learning problems. The sensory processing approach assists caregivers and professionals in “looking beyond the behavior” and into the nervous system. It helps with understanding how the child’s behavior is a manner of coping. Strategies in adapting the environment, altering interaction and providing appropriate supports for children who have difficulty with processing sensory information will be provided.  Many children with different diagnoses experience challenges in the manner in which they process sensory information (for example, learning disabilities, developmental coordination disorder, ADD/ADHD, autism spectrum disorder, cerebral palsy, and emotional behavioral disorders). This workshop is designed to assist in problem solving behaviors and learning based on observations that look beyond the label. http://www.labyrinthjourneys.com/courses/upcoming.html

Nov. 6:   “Classroom Makeover: in Regina for teachers and parents.  Presenter: Kim Barthel, OT.  This one day workshop is a follow-up practical session to the Behavioral Detective Workshop. This problem solving day provides teachers and parents with the opportunity to design optimum environments and practice putting sensory strategies into action.  . http://www.labyrinthjourneys.com/courses/upcoming.html

Nov. 5,6,7 Hanen Training “It Takes Two To Talk” in Regina for Speech and Language Pathologists.  Organized by the Regina Autism Resource Centre (with assistance from SK Health). The Hanen Centre provides training for Speech and Language Pathologists (SLP’s) who work with autistic children.  Four levels of courses will be offered as follows:  It Takes Two To Talk; More Than Words; Target Word; Learning Language and Loving It.  This is the first of the four training workshops.

Nov. 7,8,9  “Setting the State for Higher Function” in Regina for Occupational, Physical and Speech & Language Therapists.  Organized by the Regina Autism Resource Centre (with assistance from SK Health).  Presenter: Kim Barthel, OT.  This three day workshop for therapists will support professionals in their analysis and intervention of sensory processing contributions to the behavioural challenges faced by children with Autism.  Through lecture, lab, practicums and treatment mentorships, therapists will fine tune their skills in sensory analysis related to their specific discipline. 

Nov. 8, 9:: “Exploring Autism: What’s New, What’s Tried, What’s True” in Tisdale  for parents, teachers, interventionists and administrators.  Presented by SK Health & SK Learning.  Presenters: Rupal Bonli and Bonnie Quiring Gallen at North East ECIP, 610 100A Street, Tisdale.   This workshop will teach you how to take care of yourself so you can, in turn take care of your child, your students or your patients, depending on your role; help you prepare and deliver a terrific program at home or at school; introduce the newest strategies for working with children with ASD; explore the most recent research; build your confidence.  Free of Charge, with max. 40 participants.

Nov. 15, 16:  “Exploring Autism: What’s New, What’s Tried, What’s True” in La Ronge  for parents, teachers, interventionists and administrators.  Presented by SK Health & SK Learning.  Presenters: Rupal Bonli and Bonnie Quiring Gallen at Mistahsinhik Place, 1328 La Ronge Avenue, La Ronge.  This workshop will teach you how to take care of yourself so you can, in turn take care of your child, your students or your patients, depending on your role; help you prepare and deliver a terrific program at home or at school; introduce the newest strategies for working with children with ASD; explore the most recent research; build your confidence.  Free of Charge, with max. 40 participants.

Nov. 20, 21 or 21, 22: PECS (Picture Exchange Communication System) in Regina for speech language pathologists, teachers and educational assistants, home and centre-based therapists, behaviour therapists, paraprofessionals, occupational therapists, social workers, parents and family members.  Organized by the Regina Autism Resource Centre (with assistance from SK Health) at the Travelodge Hotel.  This two day training is designed to teach participants to appropriately implement the Picture Exchange Communication System.  The conference provides an overview of the Pyramid Approach to Education, to explore the key components of designing effective educational environments.   Max. 50 participants.

Nov. 22, 23: “Exploring Autism: What’s New, What’s Tried, What’s True” in Estevan  for parents, teachers, interventionists and administrators.  Presented by SK Health & SK Learning.  Presenters: Rupal Bonli and Bonnie Quiring Gallen at Estevan Comprehensive School, 255 Spruce Drive, Estevan.   This workshop will teach you how to take care of yourself so you can, in turn take care of your child, your students or your patients, depending on your role; help you prepare and deliver a terrific program at home or at school; introduce the newest strategies for working with children with ASD; explore the most recent research; build your confidence.  Free of Charge, with max. 40 participants.

Nov. 23, 24: PECS (Picture Exchange Communication System) in Regina for speech language pathologists, teachers and educational assistants, home and centre-based therapists, behaviour therapists, paraprofessionals, occupational therapists, social workers, parents and family members.  Organized by the Regina Autism Resource Centre (with assistance from SK Health) at the Travelodge Hotel.  This two day training is designed to teach participants to appropriately implement the Picture Exchange Communication System.  The conference provides an overview of the Pyramid Approach to Education, to explore the key components of designing effective educational environments.   Max. 50 participants.

Nov. 29, 30: “Exploring Autism: What’s New, What’s Tried, What’s True” in Swift Current  for parents, teachers, interventionists and administrators.  Presented by SK Health & SK Learning.  Presenters: Rupal Bonli and Bonnie Quiring Gallen at E.I. Wood Building, 350 Cheadle Street W, Swift Current.   This workshop will teach you how to take care of yourself so you can, in turn take care of your child, your students or your patients, depending on your role; help you prepare and deliver a terrific program at home or at school; introduce the newest strategies for working with children with ASD; explore the most recent research; build your confidence.  Free of Charge, with max. 40 participants.

Dec. 3, 4 or 10, 11: ADOS (Autism Diagnostic Observation Schedule) in Regina for diagnostic professionals.  Organized by the Regina Autism Resource Centre (with assistance from SK Health).  The ADOS is the best practice assessment tool for autism.  It gives service providers the ability to assess most children who are suspected to have ASD.  It is a semi-structured, standardized assessment of communication, social interaction and play or imaginative use of materials for individuals who have been referred because of possible autism or an autistic spectrum disorder.  The ADOS is of particular interest to psychologists, psychiatrists, occupational therapists and speech language pathologists.

Dec. 6, 7: “Exploring Autism: What’s New, What’s Tried, What’s True” in Kindersly  for parents, teachers, interventionists and administrators.  Presented by SK Health & SK Learning.  Presenters: Rupal Bonli and Bonnie Quiring Gallen at Wellbelove Building, 113 – 2^nd Ave. W, Kindersly.   This workshop will teach you how to take care of yourself so you can, in turn take care of your child, your students or your patients, depending on your role; help you prepare and deliver a terrific program at home or at school; introduce the newest strategies for working with children with ASD; explore the most recent research; build your confidence.  Free of Charge, with max. 40 participants.

Dec. 13, 14: “Exploring Autism: What’s New, What’s Tried, What’s True” in Moose Jaw  for parents, teachers, interventionists and administrators.  Presented by SK Health & SK Learning.  Presenters: Rupal Bonli and Bonnie Quiring Gallen at Valley View Centre, 7^th Ave. SW, Moose Jaw.   This workshop will teach you how to take care of yourself so you can, in turn take care of your child, your students or your patients, depending on your role; help you prepare and deliver a terrific program at home or at school; introduce the newest strategies for working with children with ASD; explore the most recent research; build your confidence.  Free of Charge, with max. 40 participants.

Jan 28, 29: SCERTS (Social Communication, Emotional Regulation, and Transactional Support) in Regina for speech language pathologists, social workers, psychologists, occupational therapists, educators and professionals who work with children with Autism Spectrum Disorders in early intervention and primary grade settings.  Organized by the Regina Autism Resource Centre (with assistance from SK Health).  The SCERTS Model is a comprehensive, multidisciplinary approach to enhancing communication and socioemotional abilities of children from early intervention to the early school years. 

Feb ? Workshops in various locations for parents, interventionists and administrators.  Organized by SK Health and SK Learning.  The focus will be on middle and high school age youth with autism.

Feb. 20, 21, 22: Hanen Training “More than Words” in Regina for Speech and Language Pathologists.  Organized by the Regina Autism Resource Centre (with assistance from SK Health). The Hanen Centre provides training for Speech and Language Pathologists (SLP’s) who work with autistic children.  Four levels of courses will be offered as follows:  It Takes Two To Talk; More Than Words; Target Word; Learning Language and Loving It.  This is the second of the four training workshops.

Mar. 4, 5: Mental Health Conference in Regina.  Organized by the Regina Autism Resource Centre (with assistance from SK Health). 

Mar 19, 20: TEACCH (Preparing Individuals with ASD for the World of Work) in Regina for parents, teachers, job coaches, employers and anyone involved in the employment sector.  Organized by the Regina Autism Resource Centre (with assistance from SK Health) at the Travelodge Hotel .  The TEACCH approach includes a focus on the person with autism and the development of a program around the person’s skills, interests and needs.  Its vocational assessment tool named the Transition Assessment Profile (TTAP) will be the focus of the conference. 

Mar. (end of month): Sensory Profile Training  in Regina for paediatric occupational therapists, and other therapists who assess and treat sensory processing difficulties, including physical therapists and speech language pathologists.  Organized by the Regina Autism Resource Centre (with assistance from SK Health).  Presenter: Winnie Dunn.  This course will explore strategies for designing effective interventions plans using sensory processing evidence available.  This course will explore strategies for designing effective interventions plans using sensory processing evidence available. 

Mar 31, Apr. 1: Hanen Training “Target Word” in Regina for Speech and Language Pathologists.  Organized by the Regina Autism Resource Centre (with assistance from SK Health). The Hanen Centre provides training for Speech and Language Pathologists (SLP’s) who work with autistic children.  Four levels of courses will be offered as follows:  It Takes Two To Talk; More Than Words; Target Word; Learning Language and Loving It.  This is the third of the four training workshops.

Jun 4, 5, 6: Hanen Training “Learning Language and Loving It” in Regina for Speech and Language Pathologists.  Organized by the Regina Autism Resource Centre (with assistance from SK Health). The Hanen Centre provides training for Speech and Language Pathologists (SLP’s) who work with autistic children.  Four levels of courses will be offered as follows:  It Takes Two To Talk; More Than Words; Target Word; Learning Language and Loving It.  This is the fourth of the four training workshops.

Individualized Funding & Individually Funded Services

Information Sheet

How are services and supports for adults with intellectual disabilities provided in Saskatchewan right now?

Presently, services and supports for adults with intellectual disabilities are primarily delivered in group or congregated settings such as group homes and workshops. Financial support is given to agencies by the Provincial Government to provide a set number of spaces for services and supports for people with intellectual disabilities. This way of providing supports is called the Block Funding model (BF).

While Individualized Funding (IF) and Individually Funded Services (IFS) are not commonly available in Saskatchewan for persons with intellectual disabilities we do know that there are a very small number of IF and IFS projects that are operating successfully in the province. We believe that these projects set a precedent for a move to make IF and IFS true options for everyone.

What are Individualized Funding and Individually Funded Services?

Individualized Funding (IF) is a way some governments provide financial support to people with intellectual disabilities. Under Individualized Funding, a person centered plan is developed for the individual. This plan reflects the individual’s needs and goals. The person with a disability can, if they wish, receive money directly from the government to purchase the supports and services they choose, instead of using the services that are currently provided for them. Funding can be sent directly to the person, or a parent/support person or team acting on the person’s behalf and that money can be used to buy the services and supports the individual needs. Individualized Funding has been used successfully in many other parts of Canada for over 25 years.

Individually Funded Services (IFS) are services that are planned around the individuals needs and are delivered by agencies that provide services to people with disabilities. Through IFS the individual’s personal plan will still be at the center of all planning but the administration and provision of the services is done by a service provider. If the person with a disability or their family decides that their needs can be better met through another service provider they can choose, with appropriate planning and notice, to have their funding moved to another agency. The funding is portable, in other words it ‘follows’ the person when they move to another service provider or community.

At this time, there are a very limited number of IF and IFS plans in Saskatchewan. We believe that all people with intellectual disabilities should have the right to choose IF or IFS if they want them.

What are the benefits of Individualized Funding and Individually Funded Services?

People who have been able to access IF say that controlling their own funding helps them to get the kind of supports and services they want. They report that their life is better overall through having choices and control. They can explore supported employment opportunities, daytime activities and housing options that were not available before. Some people have been able to own their own homes, hire staff, and get out in the community more often. They tell us that Individualized Funding has changed their lives.

People who have access to IFS negotiate directly with their service provider as they need to. They can change which service provider they use if they find their needs are not being met. Their funding follows them.

Things to think about:

            • Some people who have used IF say that they don’t enjoy doing the paperwork and that it is sometimes difficult to hire people or find the right kind of services. SACL is prepared to administer the funding on behalf of the individual or their team and/or find another organization to do this.

            • Who might be interested in IF/IFS? People who want services that are different than what is currently provided or people who want specialized services or more personalized planning around supports and services.

Why should we support Individualized Funding/Individually Funded Services?

IF and IFS may not be the right choice for everyone; however, people who have used it say that even when there are problems, IF is still better because it allows for flexible, personalized supports. IF and IFS need to be available as a choice for all individuals with intellectual disabilities.

What do we need to have in place to make sure Individualized Funding works well in Saskatchewan?

We need to make IF and IFS available as a real choice for people with intellectual disabilities and their families.

There is a need for clear guidelines that reflect the right of choice and independence. It is critical that the people who will use IF be involved in the development of the Saskatchewan model, and that the resulting model is flexible, based on the needs of the individual, and transportable.

What can I do if I am interested in working on an IF or IFS plan for me or my adult son or daughter?

You can call the Saskatchewan Association for Community Living (SACL). We will answer your questions about IF and IFS. If you are interested in developing a plan SACL will support you to do so. SACL will also help you in determining who you should present your plan to for funding and will support you in doing so.

There is a Guide available that gives you information on developing an Individualized Funding or Individually Funded Services proposal. This is available from SACL.

For more information

Please contact:

Judy Hannah, Coordinator SACL IF/IFS Project

3031 Louise Street

Saskatoon, SK S7J 3LA

Phone: (306) 955-3344 ext. 12

Email: judy.hannah@sacl.org

SCHOLARSHIP OFFER TO ATTEND AN AUTISM TODAY CONFERENCE

Thank you for your interest in our Keys to the Treasure Chest conference series on Autism and Asperger’s.  These comprehensive series will provide you with leading edge topics, trends, treatments and therapies surrounding autism.

Although these are excellent resources for parents and other family members of children affected by autism, we are well aware that the registration fees for these events can be difficult for parents to afford on top of the many other expenses that arise from raising a child with exceptional needs.  This is why we are offering a partial scholarship for parents and family members to attend our upcoming Keys to the Treasure Chest Conference in Saskatoon, SK on May 11^th and 12^th.

The partial scholarship that we are offering to parents and family members will reduce the registration fee to $50.00 CAD (plus GST) for the full two day conference.

To apply for this partial scholarship please provide the following information via fax to 1-780-452-1098 or email to info@autismtoday.com;

Name:

Mailing address:

Telephone number:

Email:

Brief paragraph introducing your family and explaining why you would not be able to attend this conference without the partial scholarship:

Note: You will be contacted via email if your scholarship is approved.

Sincerely,

Karen Simmons
CEO Autism Today

US Survey Shows Autism Very Common

      By Maggie Fox for Reuters http://abcnews.go.com/Technology/wireStory?id=1923924

      The first national surveys of autism show the condition is very common among U.S. children -- with up to one in every 175 with the disorder, the U.S. Centers for Disease Control and Prevention said on Thursday.

      This adds up to at least 300,000 U.S. schoolchildren with autism, a condition that causes trouble with learning, socializing and behavior, the CDC said.

      The CDC analyzed data on 24,673 children whose parents took part in two separate government surveys on health in the United States to generate its first national estimate of the prevalence of autism.

      "Together, these two national surveys of parents indicate that at least 300,000 children aged 4 to 17 years old had autism in 2003-04," the CDC said in the report.

      The surveys came up with similar results -- that autism has been diagnosed in anywhere between 5.5 per 1,000 and 5.7 per 1,000 children aged 4 to 17. This translates to between one in every 175 to one in every 181 children.

      "(The surveys) affirm that autism is a condition of major public health concern that affects many families," Dr. Jose Cordero, director of CDC's National Center on Birth Defects and Developmental Disabilities, told reporters in a telephone briefing.

      He said the findings fit in with previous estimates of autism, which were based on local surveys done in Atlanta and New Jersey.

      The 1996 Metropolitan Atlanta Developmental Disabilities Surveillance Program survey showed autism had been diagnosed in 3.4 per 1,000 of the 3- to 10-year-olds included, or one in every 296. The 1998 Brick Township, New Jersey survey showed a rate of 6.7 per 1,000 children of the same age, or one in every 166.

      None of the surveys pointed to a cause for autism -- a matter of deep controversy in the United States. Some groups have accused the CDC of covering up data that would link autism with vaccines, although studies in several countries have discounted such a link.

      "We recognize that parents want answers," Cordero said.

      "If children have autism, parents want to know what caused it and how they can lower this risk if they have other children. We share their frustration."

No Trends

      While there were some differences among age groups, the CDC said the differences were not statistically significant.

      "Both surveys indicated that boys were nearly four times more likely to have been diagnosed with autism than girls," the CDC said in the report, published in its weekly report on death and disease.

      "Both surveys indicated that Hispanic children were less likely to have an autism diagnosis." The survey could not indicate why that might be.

      Laura Schieve, an epidemiologist at the National Center on Birth Defects and Developmental Disabilities who helped conduct the study, said the study could not answer many questions about autism.

      "Although often autism can be identified as early as 18 months, many children will not be diagnosed until they get to school," she told the briefing.

      And parents of older children could easily have forgotten an early childhood diagnosis, she said.

      "After children have received treatment for an extended time, they may show fewer symptoms of autism," she added.

      "Also the criteria for autism have been broadened slightly."

+ CDC original article here: http://www.sarnet.org/lib/CDCPrev5-4-06.htm

Where Does Canadian Buck Stop For Autism Treatment?

      By Rob Demone for Abbotsford News, British Columbia, Canada. http://tinyurl.com/nmnu8

      In the political minefield that is the autism debate, there is a rumour.

      It's not a pretty one, such debates seldom begat pretty rumours. And this particular debate is fought on one side by parents fueled by passion for their children.

      Who can blame them, or fault their motives. Everyone knows not to get between a mother and her child.

      And that is why this debate over funding for autism treatment is such a political football.

      The rumour, fast becoming the stuff of urban legend, has it that a particular lobbyist approached a particular person in a particular elected representative's office to ask that yet another petition be presented to have autism treatment recognized in the Canada Health Act.

      "I will not be the poster boy for autistic children," the person is said to have retorted.

      Perhaps six-year-old Maya Kaler is a more appropriate poster child for autism. Her haunting black eyes only hint at the depth of mystery that is her mind. She's considered mildly autistic, and the treatment that will help her have a better life (she only gets one life) is expensive.

      So far, her Ocean Park parents have managed to cope - by depleting the family savings and cashing in their RRSPs.

      It's interesting this week, as we watch West Vancouver parents pack the kids in the Audi for the trek to protest Sea-to-Sky Highway construction. Those Gap-clad kids are given posters to wave and slogans to chant for the fawning TV cameras.

      It's interesting to contrast the protest parents of autistic children must wage.

      Where is the orchestration for 150,000 children who live under the smothering blanket of autism? Where is the media frenzy to demand answers? You can't see autism. It's not a haggard deformity or a visible scar. You can't command these nine-year-olds to flap signs in cadence to trumped-up poems about what an atrocity it is to have government make greater-good decisions their parents don't agree with.

      Many families of autistic children are, to be sure, privileged. They have the ability to pay for the intense Lovaas (behavioural) treatment that is giving them hope their children will lead better lives.

      But how long can they afford $40,000 a year for treatment and related family care costs? More glaring is the untold story of the families who cannot afford treatment in the first place.

      Who champions their cause? The federal and provincial governments shunt this at each other, neither wanting to shoulder the rather extensive burden of responsibility. Because with that comes the huge funding burden.

      There are many, many questions - and far too few answers. The trouble seems to be, no one will begin the discussion, lest they are considered to be taking the lead role, ergo the responsibility - and with that comes the burden of funding.

      It's a complicated issue, and it deserves more pointed discussion and firmer resolve on the part of policy makers.

      As the buck is passed, parents are left with the bills. And only those who can afford the good treatment are getting it.

      Bottom line: that's not universal health care. And that's a federal responsibility.

      - Rob DeMone is editor of the Peace Arch News.

Ride up for Autism’s Dan Powaschuk returns to Regina on Friday

Media Advisory

April 25, 2007 Regina – On Friday, Dan Powaschuk will return to Regina after completing his awareness-raising “Ride up for Autism” solo motorcycle ride to Tuktoyaktuk on the Arctic Ocean.  The Regina Airport will be the scene of Dan’s arrival on April 27 when his plane arrives at 9:30 a.m.   It is hoped that the public and the media will join together in a show of support for Dan’s amazing and courageous endeavor on behalf of people with Autism Spectrum Disorders (ASD) and their families.  “It will be good to get home,” related Dan recently.  “It has been very interesting to see how many people in communities all across Western and Northern Canada have lives affected by autism.  It has also been very enlightening to see how much better other provinces and territories are at providing treatment and other services for people with ASD.” 

 Motivated by the challenges experienced in Regina around getting help for his son’s autism, Dan did not raise money for any organization, but was simply seeking to help people better understand autism and to be more aware of autism issues. “It is a real blow that Saskatchewan still does not have a treatment program for people with autism,” Dan noted with concern.  “It forces my family to give serious thought about moving to a province that does a better job of addressing treatment and other ASD needs.  I hope that my “Ride up for Autism” will help all Canadians be more aware and supportive of Autism Spectrum Disorders, especially decision-makers in all levels of government, but I especially hope it will make a difference in my home province.” 

Saskatchewan remains the only province that does not have a provincial autism treatment program.  Although Saskatchewan’s Minister of Finance announced the development of “an intensive autism treatment program” in the recent provincial budget, Saskatchewan Health recently confirmed that the amount of money designated for autism will not enable such a program to be put in place. The funding will improve the number and qualifications of autism treatment, education and support providers and assist with autism summer programming funding, but it will not enable the provision of direct treatment services.  Instead, group training sessions for families, service providers and other front-line professionals will be organized.  “While this is positive, it is deeply disappointing that Saskatchewan was falsely led to believe that a provincial autism treatment program would be put in place,” said SASKFEAT President Tim Verklan.  “There is a desperate need for people of all ages with ASD to have accessible direct treatment services now.  The provincial and federal governments, in accordance with the recent recommendations of the Senate Committee autism report “Pay Now or Pay Later”, need to work together to put funding in place to ensure that treatment services are available immediately.”

You can read more about Dan’s “Ride up for Autism” and view photos of his journey at www.rideupforautism.ca  

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Contacts:

Dan Powaschuk, cell (306) 529-1909, dpowaschuk@accesscomm.ca

Lisa Simmermon, SASKFEAT Volunteer Public Relations Director, Regina (306) 545-0966, cell (306) 533-6665 simmermon@accesscomm.ca

Tim Verklan, SASKFEAT President, Nipawin, (306) 862-4768

Saskatchewan families for effective autism treatment inc.

Box 2545, Tisdale, SK. S0E1T0 Phone:(306) 862-4768 Fax:(306) 862-3899

www.saskfeat.com; saskfeat@hotmail.com

Dan Powaskchuk called yesterday to let me know he has made it to Tuktoyaktuk on the Arctic Ocean.  Congratulations Dan!  You can see pictures of his journey (including a very close photo of a polar bear) on his website www.rideupforautism.ca .   Below my signature is an article that ran in the Regina Leader Post yesterday about Dan’s “Ride up for Autism” journey.  Dan asked me to share with you one observation from his journey: BC, Yukon and the NWT have Child Development Centres in most larger cities/towns which each have a speech therapist, occupational therapist and other treatment professionals who work together to develop a treatment plan for a child, deliver direct treatment services and family training, and supervise the treatment program.  They coordinate their services so a family comes for a half day visit and sees all the applicable professionals in one place on one day.  It certainly is a model for consideration. 

The “Being Me” Asperger/HFA family support meeting this month is on Friday April 20 at 6:30 at Balgonie Elementary School.  For more information, contact Valetta Young at beingme@xplornet.com or 306-699-7302.  People with Asperger’s/HFA are invited to attend, as are their parents and their siblings. 

There will be an autism awareness concert with proceeds to the Casey Foundation on Sunday evening at 7:00 at the Regina Rugby Club featuring Canadian Juno award winning musicians.  Folksinger Valdy and guitarist/singer Jack Semple will lead the concert lineup which also includes other local musicians.  Tickets are $20 and can be obtained from Jeanne Tetlock in Regina at 545-1975 or tetlockknives@hotmail.com .  Please see below my signature and the attachment for more information. 

SACL's Annual Family Conference "Family Leadership in Action, Tools for Successful Advocacy" is happening on May 4-5, 2007 in Saskatoon. 
Click here to read the conference brochure and registration

Valdy and Jack Semple Perform
 for Autism Awareness and the Casey Foundation

Media Advisory

April 16, 2007 Regina - Two Juno award winning singer/songwriters, Valdy and Regina’s own Jack Semple will be bringing the Regina Rugby Club at 4025 25th Ave. to life with the sounds of their music on Sunday April 22 at 7:00.  The concert, organized to support awareness of Autism Spectrum Disorders with proceeds to the Casey Foundation, will bring together these generous international soloists with local musician Grant Bastedo, a country & western singer/songwriter, along with Rene and Dennis Dumont, who yodel and sing old country style music.  The $20 tickets are going fast and can be obtained in Regina from Jeanne Tetlock at 545-1975. 

Valdy has produced 14 albums, 22 singles, 4 gold records, and has won 2 Juno awards for Country Male Vocalist & Folksinger.  He continues to tour North America and Europe, and is an oft-invited performer at the Kerrville Folk Festival in Texas. http://www.valdy.com/  

Jack Semple is a guitar player’s guitar player. An absolute virtuoso of his art form Jack plays with unparalleled feeling and total technical control.  The Juno award winning guitarist/singer has performed from Vancouver to Montreaux, released 7 CD’s and shared the stage with many other international artists. http://www.jacksemple.com/

The Casey Foundation’s mission is to enrich the lives of children with autism by assisting with the costs involved in accessing available services, and to help those children to develop to their fullest potential.     http://www.thecaseyfoundation.org                 

Autism Spectrum Disorders (ASD) are life-long neurological inflammatory conditions that result in brain and body differences that affect a number of systems and how a person perceives and processes sensory as well as other information.  They are characterized by challenges with communication, behavior, interaction as well as health and impact many aspects of an individual’s development.  With scientifically validated effective treatment, including behavioral, occupational, speech and biomedical therapy, most individuals with ASD, who often have normal IQ and remarkable talents, make remarkable progress and develop the skills and comfort level to achieve at least semi-independence.  Saskatchewan remains the only province without a provincial autism treatment program, despite the Minister of Finance’s promise of one in the recent budget.  For more information, get in touch with Saskatchewan Families for Effective Autism Treatment (SASKFEAT) www.saskfeat.com , which represents our province to Autism Society Canada www.autismsocietycanada.ca .

Jack can be reached by phone for interviews at 569-2387.  Lisa Simmermon from SASKFEAT is available to discuss autism and this event.

--30 –

Contacts:

Lisa Simmermon, SASFKFEAT Volunteer Public Relations Dir., Regina 545-0966, cell 533-6665 simmermon@accesscomm.ca

Jack Semple Regina 569-2387

Jeanne Tetlock, Event Organizer, Regina 545-1975

Ride for autism awareness well-received

Anne Kyle, with files from Pamela Cowan, Leader-Post

Published: Monday, April 16, 2007

Dan Powaschuk was scheduled to arrive in Tuktoyaktuk, N.W.T., on the shores of the Arctic Ocean on Sunday, but his journey is far from over.

The Regina man, who was in Inuvik -- three hours outside his final destination when the Leader-Post caught up with him -- said he has reached one milestone in his goal -- successfully completing his month-long solitary motorcycle trip from Regina to Tuktoyaktuk to raise awareness of Autism Spectrum Disorder.

But his journey, which is dedicated to his four-year-old autistic son Eric, won't be complete until the Saskatchewan government provides direct assessable treatment services to people with autism and support for their families.

Powaschuk, who left the Queen City on March 15, said his experience on the road has been pretty good except for a mishap on Friday where he took a spill while crossing the Tombstone Pass on the Dempster Highway and twisted his knee. The injury slowed him down, but didn't stop him from continuing his trip on the back of his bike.

"The people have been fantastic and the interest in my ride for autism has been very good,'' he said in a telephone interview.

While Powaschuk's trip was aimed at increasing the public's awareness of autism and the issues faced by people with this condition, he said he also developed a greater appreciation of the isolation and sensory overload many autistic people experience every day.

His trip has been a solitary ride requiring heightened sensory awareness as he travelled through some of the most isolated regions of the country.

"You are on your bike all by yourself. You are taking care of yourself and trying to keep things from overwhelming you. You've got to watch the road, you've got to watch for wildlife, you've got to watch for ice, you've got to watch for truckers who are driving too fast for the road. You've got to watch for all of that.''

As he zipped through the countryside Powaschuk said he focused his attention on the roads, but during his stopovers he met a lot of good people and heard a lot of stories, particularly sad stories from families with autistic children.

"I was very impressed how well Alberta, British Columbia, the Yukon and even the Northwest Territories have their resources for children with special needs, not just autism, under one roof in child development centres,'' he said.

"What makes that special from what we have in Saskatchewan is that they have speech therapists, occupational therapists and developmental therapists all under one roof. You actually take your child there and drop them off for a half-day program and they can go through all the treatment they need.''

Saskatchewan remains the only province that does not have a provincial autism treatment program that provides direct treatment services, according to Saskatchewan Families for Effective Autism Treatment.

The incidence of autism has increased to one in 150 children, according to Theresa Savaria, executive director of the Autism Resource Centre in Regina.

"There are children all over the province who aren't getting treatment," Savaria said, explaining the resource centre, which services the Regina Qu'Appelle Health Region currently has 119 clients and a waiting list of 147 children.

© The Leader-Post (Regina) 200

 Autism Costs Society An Estimated $3m Per Patient

http://www.eurekalert.org/pub_releases/2007-04/jaaj-acs032907.php  

      Each individual with autism accrues about $3.2 million in costs to society over his or her lifetime, with lost productivity and adult care being the most expensive components, according to a report in the April issue of Archives of Pediatrics & Adolescent Medicine, a theme issue on autism spectrum disorders.

      Autism costs society more than $35 billion in direct and indirect expenses each year, according to background information in the article. Relatively little is known about when these costs occur across the lifetime of an individual with autism.

      Michael L. Ganz, M.S., Ph.D., Abt Associates Inc., Lexington, Mass., and Harvard School of Public Health, Boston, used data from the medical literature and from national surveys to estimate the direct medical and non-medical costs of autism, including prescription medications, adult care, special education and behavioral therapies. Approximate indirect costs, including lost productivity of both individuals with autism and their parents, were calculated by projecting average earnings and benefits at each age, adjusted for the fact that some autistic individuals can work in supported environments. Only costs directly linked to autism, and no medical or non-medical costs that would be incurred by individuals with or without autism, were included.

      These costs were projected across the lifetime of a hypothetical group of individuals born in 2000 and diagnosed with autism in 2003. Costs estimates were broken down into age groups at five-year intervals, with the youngest group age 3 to 7 years and the oldest age 63 to 66 years.

      "Direct medical costs are quite high for the first five years of life (average of around $35,000), start to decline substantially by age 8 years (around $6,000) and continue to decline through the end of life to around $1,000," Dr. Ganz writes. "Direct non-medical costs vary around $10,000 to approximately $16,000 during the first 20 years of life, peak in the 23- to 27-year age range (around $27,500) and then steadily decline to the end of life to around $8,000 in the last age group. Indirect costs also display a similar pattern, decreasing from around $43,000 in early life, peaking at ages 23 to 27 years (around $52,000) and declining through the end of life to $0."

      Over an individual's life, lost productivity and other indirect costs make up 59.3 percent of total autism-related costs. Direct medical costs comprise 9.7 percent of total costs; the largest medical cost, behavioral therapy, accounts for 6.5 percent of total costs. Non-medical direct costs such as child care and home modifications comprise 31 percent of total lifetime costs.

      Because these costs are incurred by different segments of society at different points in an autistic patient's life, a detailed understanding of these expenses could help planners, policymakers and families make decisions about autism care and treatment, Dr. Ganz notes. "Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood," he concludes. "These results may imply that physicians and other care professionals should consider recommending that parents of children with autism seek financial counseling to help plan for the transition into adulthood."

     (Arch Pediatric Adolesc Med. 2007;161:343-349). 

Federal Autism Report calls for Funding and a National ASD Strategy

March 29, 2007 Regina – The federal government’s Standing Senate Committee on Social Affairs, Science and Technology released its Final Report today on the Enquiry on the Funding for the Treatment of Autism, entitled “PAY NOW OR PAY LATER - Autism Families In Crisis”.  The report includes a number of recommendations, including a National Autism Spectrum Disorder (ASD) Strategy, a federal/provincial/territorial (FPT) ministerial conference to address funding for autism therapy, a national ASD public awareness campaign, creation of an Autism Knowledge Exchange Centre, an Autism Research Network with targeted funding, development of an ASD research agenda, addressing of human resource issues, ensuring autism is an eligible disability for recommendations of the Minister of Finance’s Expert Panel on Financial Security for Children with Severe Disabilities, study on income splitting for ASD families, creation of tax benefits for ASD families, development of clear goals and defined outcomes as well as inclusion of adults with ASD in the national ASD symposium this year. 

Saskatchewan Families for Effective Autism Treatment (SASKFEAT) commends the Senators who worked on this report, and is very grateful for their tremendous effort to consider all of the complexities inherent in Autism Spectrum Disorder issues, and for listening carefully to all stakeholders, including families and adults with autism.  “The recommendations reveal that the Senators paid attention to all concerns raised by people from across Canada,” noted SASKFEAT representative Lisa Simmermon.  “As one of the witnesses, I can say that the Report is very welcome as another means to continue to seek the establishment of treatment and required services for all people with ASD, regardless of age.  We do indeed need federal leadership so that all Canadians affected by autism have an equitable opportunity to obtain what they need to help them reach their potential.”  SASKFEAT’s President, Tim Verklan commented that “With last week’s budget, we now have a commitment from the Saskatchewan Government for funding to begin work on recruiting and training autism treatment professionals, but still need a commitment for funding to deliver a provincial autism treatment program.  With the recommendation for the FPT ministerial conference to address funding for autism therapy, there may be more hope that Saskatchewan will be able to put a provincial effective autism treatment program in place in the near future.”

The report can be viewed online at http://www.parl.gc.ca/39/1/parlbus/commbus/senate/com-e/soci-e/rep-e/repfinmar07-e.htm

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Contacts:

Lisa Simmermon, SASFKFEAT Volunteer Public Relations Dir., Regina (306) 545-0966, cell (306) 533-6665 simmermon@accesscomm.ca

Tim Verklan, SASKFEAT President, Nipawin, (306) 862-4768

Saskatchewan families for effective autism treatment inc.

Box 2545, Tisdale, SK. S0E1T0 Phone:(306) 862-4768 Fax:(306) 862-3899

www.saskfeat.com; saskfeat@hotmail.com

 Budget Addresses Autism Provincially for the First Time with Treatment Program

March 22, 2007 Regina – For the first time, a Saskatchewan budget includes funding specifically for addressing Autism Spectrum Disorders (ASD) on a provincial basis.  The Minister of Finance, the Hon. Andrew Thomson, indicated in his budget address today that Saskatchewan will develop a provincial autism treatment program.  Considering that the U.S. Centre for Disease Control very recently announced yet another increase in the prevalence of ASD to 1 in 150, and that Saskatchewan was the last remaining province without a provincial autism treatment program, this announcement has been desperately awaited by a growing number of families and communities.  “We are thrilled that Saskatchewan families will finally have the chance for their children with autism to access an organized treatment program,” said Tim Verklan, President of Saskatchewan Families for Effective Autism Treatment (SASKFEAT).

The effort of the provincial government to put a treatment program for Autism Spectrum Disorders in place is greatly appreciated and will be tremendously celebrated.  “After a decade of providing Saskatchewan governments with hard data showing the effectiveness, including cost-effectiveness, of autism treatment, it is wonderful that the current Minister responsible for autism, the Hon. Graham Addley acted on the evidence” noted Lisa Simmermon of SASKFEAT.  Said grandfather Ken Redekopp, “Perhaps now other families will not have to be split apart like mine when my daughter’s family moved to Alberta to obtain treatment for her son with autism.  Medical conditions as common as Autism Spectrum Disorders must have all aspects of treatment available in our own province.” 

There is $2.5 million for this year for training and recruiting autism treatment professionals, and an ongoing $0.5 million annually to continue this work.  No details have yet been developed, and there will be consultations with Saskatchewan Health to determine how this will unfold.  Although the treatment program will not be available to people this year, it is very commendable that the Government is first addressing the need for treatment professionals so that treatment programming can then be organized on a provincial basis.  

However, there remain significant challenges faced by people with ASD and their families, including access to health professionals familiar with diagnosis and treatment of very common autism biomedical areas such as neuro- inflammation, endocrine, immune and digestive system issues.  These and many other difficulties have yet to be addressed.  It appears that while a first step has been taken toward accomplishing the motto “No One Left Behind” used on budget documents last year by the Department of Community Resources, there are many more steps remaining.  Now that the Government has begun walking the path to addressing autism issues, it is hoped that the pace of progress will hasten considerably so that the needs of people with ASD and their families can be met in a reasonable and timely manner.    

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Contacts:

Lisa Simmermon, SASFKFEAT Volunteer Public Relations Dir., Regina (306) 545-0966, cell (306) 533-6665 simmermon@accesscomm.ca

Tim Verklan, SASKFEAT President, Nipawin, (306) 862-4768

Saskatchewan families for effective autism treatment inc.

Box 2545, Tisdale, SK. S0E1T0 Phone:(306) 862-4768 Fax:(306) 862-3899

www.saskfeat.com; saskfeat@hotmail.com

Aspergers Support Network

The Aspergers Support Network will be holding a meeting on Sunday March 18 in Moose Jaw at the public library downtown 461 Langdon Crescent from 2pm - 4pm in the program room in the basement.  You can contact the Network at aspergerssupport@sasktel.net

Autism GI issues

Susan Fraleigh forwarded a link to a letter which people can use to take to their physicians which covers autism related gastrointestinal issues and research.  It includes references so physicians can look at the studies themselves.      

http://www.autismspeaks.org/docs/Autism_Speaks_GI_Statement_1-07.pdf

Susan also forwarded information on a Harvard University study regarding treatment of autism related gastrointestinal issues.  I have attached the information as a document, and have also located a link.  It is also very specific for physicians, and would be helpful to provide to doctors working to address autism related medical issues.  Many thanks for the information Susan!

http://www.autismcanada.org/Research/HarvardStudy.htm

Autism Early Signs Videos

Spotting the Early Signs of Autism, video duration time under 2 minutes.

      Dr. Rebecca Landa narrates videos showing what to look for in autistic children.

http://abcnews.go.com/Video/playerIndex?id=2945117  

Identifying Autism, Early, 2:34 min.

New efforts to better educate parents and pediatricians to signs of autism

http://abcnews.go.com/Video/playerIndex?id=2945333

Ride for Autism is ‘ready to go’

By MARIA COOTAUCO
Leader-Post

When four-year-old Eric Powaschuk woke up Thursday morning, he knew something was up.

His dad’s motorcycle gear and luggage were strewn about, and Eric’s mother, Line, said he eyed them suspiciously.

On Thursday, Dan Powaschuk set off for the Arctic Circle on his motorcycle. His mission is to raise awareness about autism, the disorder from which Eric suffers.

“I’m ready to go,” an upbeat Powaschuk said as he stood in front of his flame-orange Kawasaki at Thunder City Power & Leisure.

The bike, laden with a reinforced cage and emergency gear, will be Powaschuk’s constant companion as he travels more than 4,000 kilometres to Tuktoyaktuk in the Northwest Territories.

According to Autism Society Canada, one in every 251 children born in Saskatchewan will be affected with autism. Today, autism is recognized as the most common neurological disorder affecting children.

Eric attends Lakeview School’s “Discovery” pre-school program, an integrated program in which children with special-needs participate in activities designed to develop their communication, motor, social-readiness and daily living skills. The Regina Public School system offers the program in four schools in the city, assisting 48 specialneeds students between the ages of three and five.

“Eric is a wonderful little boy,” said Lindsay Gerrand, Eric’s pre-school teacher. “He’s very, very energetic. He’s enthusiastic, he loves to sing, he loves to explore things, he’s very curious.”

Powaschuk will be gone from Eric’s life for more than a month. That will present difficulties for Eric, who by nature of autism spectrum disorder thrives on routine. He’s used to having his father bathe him every night, but will have to adapt to his mother doing the job in the coming weeks.

“We’ve been trying to keep him informed as much as possible,” said Line. “We talk to him, and Dan took him aside and said, ‘Daddy’s going away but he’s coming back’ — and what he’s doing and where he’s going and why. He might not understand all of it of course, but at least we just keep him informed. And I will continue to talk to him, to keep him as stable as possible emotionally.”

“I think he has an awareness of what’s going on,” said Gerrand. “He was saying to us (Wednesday), ‘Daddy go, Daddy go.’ I think once Dad leaves, it’ll be a challenge for (Eric) and his mom, but we’re all going to work together and make it as easy for him as possible.”

Line said Eric is incredibly perceptive, which is a characteristic of autistic children. “He knows something’s going on. He’s got a little frown right now on his forehead,” said Line, holding Eric as he played with her hair. “I think he’s going to be all right.”

Trek to promote public's awareness of autism

Dan Powaschuk will ride his motorcycle from Regina to Tuktoyaktuk to promote the public's awareness of autism, a disability that affects his son.

Photograph by : Roy Antal, The Leader-Post

Maria Cootauco, The Leader-Post

Published: Tuesday, March 06, 2007

In two weeks time, Dan Powaschuk will set off for the edge of the world.

In a ride that will take him from Regina to Tuktoyaktuk, north of the Arctic Circle in the Northwest Territories, all Dan wants is attention.

He wants to raise awareness about autism and its challenges. Powaschuk's four-year-old son Eric was diagnosed with the disorder in 2005.

On Monday, Dan, a TransGas employee, was feted by SaskEnergy/TransGas to show the company's support for the expedition.

"We think we're very fortunate to have an employee who's stepping up to provide some leadership for all of Saskatchewan to learn more about autism," said Doug Kelln, president and chief executive officer of SaskEnergy. "We thought it was a great opportunity to show our support toward provincial autism work that's being done."

On March 16, weather permitting, Powaschuk will set off for Tuktoyaktuk on his motorcycle -- stopping in various cities along the way to spread autism awareness. Powaschuk said that more than anything else, he is anxious to just begin the journey. In the next couple of weeks, he will be doing test drives in icy conditions and working to eliminate the little technical glitches that could stand in his way.

"It takes a lot of dedication and will," said Powaschuk's wife Line. "I think he's done a tremendous job. He's not gone yet, but I'm very, very proud of him. I just want him to come back in one piece, which I trust he will do.

"I don't know how to express what it's doing for us. It's giving us a sense of making a difference -- that's one of the things parents have to face when they have children with autism is that you feel very helpless. You feel like you can't do anything to change (it)."

Dan hasn't even left yet, but already he is making a difference.Hits to his autism Web site, www.rideupforautism.ca, are up and he has been contacted by other families living with autism, supporting his efforts for their cause. There is a need for more support systems in dealing with autism, and the feedback has further underlined the importance of such.

Mike McCullough, Saskatchewan Roughriders linebacker and SaskEnergy employee, was on-hand at the event to support Powaschuk's TRIP.

"I think it's brave. I think it's great," said McCullough, whose son suffers from Duchenne muscular dystrophy. "It's definitely a serious undertaking. And when you have a child with a disability disorder, I mean you gotta go to great lengths to try to get the message out."

"He's been so living this and breathing this for months now," added Line.

Next month, Dan will be breathing it through his fighter-pilot-like helmet, living an experience that will take him through gravel and ice roads to spread autism information.

"We're hoping with the information made available, families will not feel this tremendous sense of isolation that they currently are experiencing in many places," said Lisa Simmerson of SASKFEAT, the provincial autism society which represents Saskatchewan in Autism Society Canada.

"They feel terribly alone and they feel terribly frustrated by the lack of services and the lack of cohesiveness in services.

© The Leader-Post (Regina) 2007

The Casey Foundation http://www.thecaseyfoundation.org , which seeks to enrich the lives of children with autism by assisting with the costs involved in accessing available services so that no child need be prevented from developing to their fullest potential, is having a fundraising family event “A Magically Delicious Evening” in Regina on March 31.  For more details about the event, and about the foundation and its services, please see their website. 

. 

People with young adults with ASD and people with children who will soon be young adults with ASD may be interested in a new resource that is downloadable for free and is very comprehensive (I’ve been reading it!):

A Guide for Transition to Adulthood

      A Guide for Transition to Adulthood, the fourth book in the Life Journey through Autism series of resource guides published by the Organization for Autism Research (OAR), is now available free of charge to education professionals and parents of children with autism.  OAR, a national nonprofit organization whose mission is to apply research to the daily challenges that people living with autism and their families must face, is distributing the Guides as part of its continuing, autism education initiative.  This newest book is a resource for parents, teachers, and professionals working in agencies and systems associated with helping an individual with an autism spectrum disorder (ASD) make the transition from adolescence to adulthood.

      OAR is also delighted to welcome the Southwest Autism Research and Resource Center (SARRC) in Phoenix, AZ, as a partner in producing the Guide. SARRC and OAR will take this collaboration a step further by developing a Transition Workshop model with the Guide as a supporting resource.  OAR President, Dr. Peter Gerhardt, who managed this Guide from start to finish, will co-direct the program, which will be introduced and videotaped at SARRC's center in Phoenix later this year.  OAR and SARRC intend to offer the workshop lesson plans and the video on DVD as additional transition resources.

      Reflecting on the new Guide, Dr. Gerhardt said, "Adulthood is the defining period of one's life, and it is our accomplishments as adults for which we are generally most proud.  It shouldn't be any different for the person with an autism spectrum disorder.  The Transition Guide, we hope, will be an effective resource for young persons with autism, their families, teachers, and service providers."

      OAR once again welcomed the collaboration of Danya International, Inc., a health communications company that aided in the development of the

first three publications in the Life Journey through Autism series.   The

parents and professionals who reviewed the Transition Guide were enthusiastic in their praise of the primary content and additional resource materials, guidelines, and samples in the appendices. 

      The areas covered include:

      . Transition agencies and legal help

      . Transition planning

      . Vocation and employment

      . Postsecondary education, and

      . Life Skills  

      Since the publication of A Parent's Guide to Research in 2003, OAR has published An Educator's Guide to Autism and An Educator's Guide to Asperger Syndrome and distributed more than 10,000 copies combined free of charge to parents, teachers, autism professionals, service providers, schools, and other autism organizations across the U.S. and in Canada.  OAR's next work in the series will be A Guide to Assessments, slated for publication in September, 2007.

      Persons interested in previewing or ordering A Guide for Transition to Adulthood or any of the other guides in the series may do so online at:

http://www.researchautism.org/resources/reading/index.asp   For more

information about OAR's Life Journey through Autism series, please contact OAR at (866) 366-9710 toll free or by e-mail: guides@researchautism.org.

The  Regina Autism Resource Centre is holding a 2 day vocational conference in April 26 and 27 entitled “Preparing Individuals with High Functioning Autism and Asperger’s Disorder for the World of Work” to provide information to parents, teachers, post secondary vocational training centers, and employers about the employability of person with High Functioning Autism and Asperger’s Disorder.  The goal is to feature individuals with ASD as valuable motivated employees who can be an asset to the work force.  For more information, go to ARC’s website at www.autismresourcecentre.com

ARC is also celebrating its 30^th anniversary in April!  For information on celebration events, please see www.autismresourcecentre.com

There will be a 2 day conference “Keys to Understanding Autism and Asperger’s” from Autism Today offered in Saskatoon May 11 and 12.  For more information, please contact Autism Today www.autismtoday.com

There will be a 3 day conference on the Gentle Teaching methodology in Saskatoon September 12 – 14, 2007 with founder Dr. John McGee.  For more information on gentle teaching, see www.gentleteaching.com and for more information on the conference, please contact the Saskatchewan Association for Community Living www.sacl.org

Dan Powaschuk of Thunder City Power and Leisure works on a bike he is going to ride in March from Regina to the Arctic Ocean to raise awareness about autism.

Photograph by : Roy Antal, Leader-Post

Dad's adventure for autism

Maria Cootauco, Leader-Post

Published: Tuesday, February 06, 2007

Dan Powaschuk is used to solo rides.

Next month, he will be motorcycling 9,000 kilometres by himself so that others do not have to be alone.

In March, Powaschuk, 47, plans to ride from Regina to Tuktoyaktuk, which sits on the edge of the Arctic Ocean in the Northwest Territories.

He's riding to raise autism awareness so families dealing with autism aren't battling the disorder alone.

His flame-orange Kawasaki KLR 650 sits in Thunder City's garage and gets tended to by mechanic Dave Elmer. Studded 100-pound tires rest against a wall awaiting their call to duty.

Powaschuk's motorcycle expedition will take him along a 190-kilometre stretch of ice road that in the summer time is the Mackenzie River.

The expedition will take between three and four weeks. And his bike will be packed with the essentials needed for such a trip. He will have an extra fuel pack in case he runs out of fuel along an isolated stretch of road, electric clothing to keep him warm, an armour suit to prevent injury, a survival vest, a winter tent, a winter sleeping bag, a small stove, an emergency locator, a GPS system, and a satellite phone.

The biggest challenge Powaschuk anticipates is dealing with the cold weather. The bike has been modified to withstand very low temperatures.

"The bike can go in the cold weather," he said. "But how much can I take in cold weather?"

He will be driving along the Dempster Highway in the Northwest Territories, which is a rock road built on permafrost made of hard, crushed rock. As far as Powaschuk knows, no one has ever driven through it in the wintertime on a motorcycle.

Powaschuk used to be in the military reserves, where he received extensive training, and also trained with the Army Cadets. He has experience with mountaineering and glacier work.

In June, during a test run in Stony Rapids, he was thrown off his bike and suffered a broken collarbone. Unable to pick up his bike, he walked for an hour and a half before he was picked up by a trucker. This time, he will be equipped with a satellite phone and snacks within easy reach -- just in case. And to feed the boredom, he'll have audio books to play on his IPod.

"It's quite an undertaking," said Al Elmer, owner of Thunder City. "He's done so much homework to try and make sure it's going to work. We wish him luck."

Powaschuk is not riding for donations -- the ride is strictly for awareness. His four-year-old son, Eric, was diagnosed with autism spectrum disorder, a learning disability, in 2005.

"With autism, you can't take time," Powaschuk said. "This drive's not going to help my son because he's four now. The message, I say, is early intervention because you have to get them out of themselves into the real world."

Awareness in the public of autistic children is another thing driving Powaschuk's mission.

People do not know enough about autism, Powaschuk said. His message is a call to arms. Something can be done to improve the situation, he said.

"You have to get out there and ask people who make decisions questions," Powaschuk urged.

"Ask health-care providers what they're doing for autism. School boards -- what are they doing for autism kids? How are they gearing up for more of them? Public services -- what are they doing with these kids when they're out of school?"

For more details, visit Powaschuk's Web site at www.rideupforautism.ca.

© The Leader-Post (Regina) 2007