Autism Spectrum
A free Internet directory that highlights autism-friendly businesses and locations was introduced by Rep. Dennis O’Brien (R-Philadelphia) . “This website allows families and individuals living with autism to easily look for and recommend a range of autism services throughout the state,” said O’Brien. “The goal is to make living with autism less stressful. You can find things like which medical providers specialize in autism, where are the nearest support groups, which restaurants meet your dietary needs, where can you find sensory-friendly clothing stores, and so many other listings geared toward those with autism.” The website, www.autismresources .com, is a result of a recommendation of the state’s 2004 Autism Task Force aimed at increased access to information. It was developed by Keystone Autism Information Systems Inc., (KAIS) a non-profit founded for the sole purpose of developing this public service autism resource site. Funding for the site was provided by a Department of Community and Economic Development grant attained by Rep. O’Brien in 2008.
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Kids with autism typically have issues with balance and sound, but they love to careen a tiny toy tractor through the topsy-turvy 3-D toyland of an EASe video game from Vision Audio, Inc., collecting treasures while listening to specially designed music. The video game is more than fun – it helps children with autism spectrum disorders (ASD) learn to cope with noise, regulate their balance and improve sensory processing. A free demo can be downloaded at www.easecd.com
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Socially Speaking Success (formerly Socially Speakingis in its 8th year and has been highly regarded by parents and educators throughout the Montgomery County community. The program is run by two licensed speech pathologists and an occupational therapist committed to working as a team to provide social communication skills and sensory integration skills in a structured setting. The targeted population includes but is not limited to those diagnosed with Autism Spectrum Disorder, ADHD, PDD and those students who demonstrate social pragmatic delays. The children and young adults from ages 5-25 must be verbal and capable of integrating themselves in a small group setting with minimal behavior disruptions. They must also possess a cognitive level for understanding basic directions and participation in discussion.For those of you who are not aware, the Bureau of Autism Services provides grants to support individuals with ASD of up to $500 to help costs of such programs. It is possible they will be offering grants this year beginning in February. You may apply for this grant at the Bureau Website: www.autisminpa.
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STUDY SEEKS PARTICIPANTS: The EARLI Study – Early Autism Risk Longitudinal Investigation, a study to find the causes of autism.
Location: The Children’s Hospital of Philadelphia and Drexel University’s School of Public Health.
Principal Investigator: Dr. Craig J. Newschaffer.
This study of women who are less than 20 weeks pregnant and already have a biological child diagnosed with autism has the potential to provide ground-breaking clues relevant to discovering possible environmental and genetic links to autism. A network of leading autism researchers from across the country are participating in the largest, real-time research study to investigate early risk factors for Autism Spectrum Disorders (ASD). EARLI will follow up to 1200 pregnant women from 20 or less weeks of pregnancy up to the new baby’s 3rd birthday. This current project aims to discover biological markers and environmental risk factors for autism, collecting wide ranging data with extensive biosampling and investigating the influence of hundreds of environmental factors from diet to infection to pesticides and medications.
Participants needed –
Mothers who have a biological child diagnosed with ASD.
Mothers who are pregnant 20 weeks or less, or may become pregnant.
Mothers who live in the participating counties for the various study sites in Southeast Pennsylvania, Northeast Maryland and Northern California (please see our website for more specifics on locations of the study).
Benefits:
Participants will receive developmental and behavioral assessments for their new baby, beginning at 6 months of age through their 3rd birthday, along with reports detailing these assessments.
Participants will be compensated between $545 and $605 for completion of the entire study from pregnancy through the baby’s 3rd birthday; they will also be reimbursed for travel and related expenses.
Small gifts for the baby and the family will be given throughout the study, such as books for the baby, a diaper bag, and a social story for siblings about the baby’s birth.
Access to local autism resources and information about study findings.
For more information, visit www.EARLIStudy.org
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Mi-Stories™ were created by Debbie Lord of Harleysville, PA, a Speech Language Pathologist who directs clinical, educational, and healthcare services; and KenCrest Centers and are designed as brief social scenarios that focus on everyday activities. The videos, ranging from 2 – 4 minutes in length, will target communication and social behavior in community settings. They can be viewed on an iPod to allow an adolescent or adult with autism spectrum disorder or other developmental disabilities to easily watch them and learn the appropriate social behavior in numerous different situations. The stories can also show the viewer what to expect in certain situations. Mi-Stories™ utilize modeling, social scripting, and visual strategies to help target appropriate behavior and social skills. There are numerous stories available including going to the grocery store, going to a restaurant, calming, getting dressed, crossing the street, riding in the car, as well as a video on how to use the iPod and a parent training protocol.
The Mi-Stories™ work in numerous ways. People with disabilities are able to watch the stories and hear and see appropriate behavior and social interaction. They also hear a scripted social scenario that describes how to act and interact all while watching the story. Also, with the iPod, the story can be utilized right before or during the activity, if necessary.
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The earlier children with autism spectrum disorders (ASDs) are
diagnosed, the better. Most are not diagnosed until after age 4. It’s
important for doctors to screen all children for ASDs. Read about one
family’s experience.
Autism Spectrum Disorders: One Family’s Story
Mary Elizabeth’s Story
“Our personal journey into this world of autism began just over eight years ago with the birth
of our son, Perry. Since the beginning, he struggled immensely. The first thing we noticed was
that he seemed very restless. He was always unsettled. He had a lack of recognition in his eye.
He didn’t eat. He didn’t sleep. As each day passed, we recognized more ‘red flag’ characteristics
of autism with repetitive behaviors, speech/sound delays and more.
I put Perry’s name on the waiting list of every developmental pediatrician in and around
Atlanta. I was told there would be a minimum 6 month wait time. Meanwhile, at 12 months of
age, he was found to be eligible for the Babies Can’t Wait program (Georgia’s early intervention
system) due to his developmental delays and he began a steady course of daily therapies. When
Perry was 15 months old, we finally got an appointment with a Developmental Pediatrician.
The doctor confirmed what I already knew: Perry has autism.
I cried all the way home. I cried for 2 days, hoping and praying that I would be able to provide
this child everything he needed. My research recommended 40 hours of ABA (applied behavior
analysis) therapy, which insurance would not cover. I also found thousands of pages of
different treatment approaches, all of which claimed to be effective in treating autism. I could
not afford to make the wrong choice. My son’s future depended on it.
In addition, I was 7 months pregnant with our daughter. Margeaux was born blue and
immediately faced feeding and sleeping problems of her own. Margeaux’s health struggles
continued, one after the other. She was also restless, but in a different way than Perry had
been. When Margeaux was 12 months old, we found ourselves undergoing our second Babies
Can’t Wait (Georgia’s early intervention system) evaluation. Margeaux’s therapy began and
Perry’s therapy continued. Now there were two therapy schedules to juggle. Her ‘official’
Asperger’s diagnosis came at age 5. It was a long road.
While typical children are scheduling play dates and extracurricular activities, our children’s
lives are about therapies, day after day, year after year, usually 7 days a week. People on the
outside cannot grasp the necessary skills that our children require help with.
My incredibly special children have been a true gift. Of course, like any mother, I would take
away their struggles if I could. I strive every day to be the kind of parent they deserve. I hope I
am as much a gift to them as they are to me. They are a bright spark in so many lives.
My ultimate hope is that one day soon my children will live in a world where they will be
accepted and appreciated, despite their differences. As long as I am here, I try to surround
them with people who love and accept them as they navigate this world, because autism never
takes a day off.”
Screening and Diagnosis
Tools for Health Care Providers
Get information on screening and diagnosis especially for
health care providers, including:
• Developmental screening tools
• Diagnostic tools
• Screening in the practice setting
• Recommendations
Diagnosing autism spectrum disorders (ASDs) can be difficult, since there is no medical test,
like a blood test, to diagnose the disorders. Doctors look at the child’s behavior and
development to make a diagnosis.
ASDs can sometimes be spotted at 18 months of age or younger. By age 2, a diagnosis by an
experienced professional can be considered very reliable. However, many
children do not receive a final diagnosis until they are much older. This delay means that
children with ASDs might not get the help they need during a critical period of development.
Diagnosing ASDs takes two steps:
Developmental Screening
Developmental screening is a short test to tell if children are learning basic skills when they
should, or if they might have delays. During developmental screening the doctor might ask the
parent some questions or talk and play with the child during an exam to see how she learns,
speaks, behaves, and moves. A delay in any of these areas could be a sign of a problem.
All children should be screened for developmental delays and disabilities during regular wellchild
doctor visits at:
• 9 months
• 18 months
• 24 or 30 months
Additional screening might be needed if a child is at high risk for developmental problems
due to preterm birth, low birth weight or other reasons.
•
In addition, all children should be screened specifically for ASDs during regular well-child
doctor visits at:
• 18 months
• 24 months
Additional screening might be needed if a child is at high risk for an ASD (e.g., having a
sister, brother or other family member with an ASD) or if behaviors sometimes associated
with ASDs are present.
•
If your child’s doctor does not routinely check your child with this type of developmental
screening test, ask that it be done.
If the doctor sees any signs of a problem, a comprehensive diagnostic evaluation is needed.
Comprehensive Diagnostic Evaluation
The second step of diagnosis is a comprehensive evaluation. This thorough review may include
looking at the child’s behavior and development and interviewing the parents. It may also
include a hearing and vision screening, genetic testing, neurological testing, and other medical
testing.
Early Intervention Services
Research shows that early intervention treatment services can improve a child’s development.
Early intervention services help children from birth to 3 years old (36 months)
learn important skills. Services include therapy to help the child talk, walk, and interact with
others. Therefore, it is important to talk to your child’s doctor as soon as possible if you think
your child has an ASD or other developmental problem.
It is not necessary for your child to have a diagnosis to get early intervention
services. Even if your child has not been diagnosed with an ASD, he or she may be eligible for
early intervention treatment services. In addition, to access treatment for particular symptoms,
such as speech therapy for language delays, you do not need to wait for a formal autism
diagnosis. Early interventions services are provided free or at reduced cost in every state. While
early intervention is extremely important, intervention at any age can be helpful.
Learn more about early intervention » (http://nichcy.org/babies)
More Information
• Autism Spectrum Disorders (http://www.cdc.gov/ncbddd/autism/index.html)
• Developmental Milestones (http://www.cdc.gov/milestones)
• If You’re Concerned (http://www.cdc.gov/concerned)
• Information for Families (http://www.cdc.gov/ncbddd/autism/families.html)
• Information for Health Care Providers (http://www.cdc.gov/ncbddd/autism/hcp.html)
• Information for Educators (http://www.cdc.gov/ncbddd/autism/educator.html)
CDC’s National Center on Birth Defects and Developmental Disabilities
(http://www.cdc.gov/ncbddd)
•
References
Lord C, Risi S, DiLavore PS, Shulman C, Thurm A, Pickles A. Autism from 2 to 9 years of
age. Arch Gen Psychiatry. 2006 Jun;63(6):694-701.
1.
Handleman, J.S., Harris, S., eds. Preschool Education Programs for Children with
Autism (2nd ed). Austin, TX: Pro-Ed. 2000.
2.
National Research Council. Educating Children with Autism. Washington, DC: National
Academy Press, 2001.
3.
CDC works 24/7 saving lives, protecting people from health threats, and saving money to have a more
secure nation. A US federal agency, CDC helps make the healthy choice the easy choice by putting science
and prevention into action. CDC works to help people live longer, healthier and more productive lives.
CDC Features - Autism Spectrum Disorders: One Family’s Story Page 4 of 4
http://www.cdc.gov/Features/AutismScreening/ 4/10/2012
RESOURCES
Advisory Board on Autism and Related Disorders (ABOARD) offers comprehensive services to help children, adolescents and adults with autism reach their maximum potential. ABOARD offers information, education and family support, including free telephone services.
The Autism Society of America, Greater Philadelphia Chapter was established by a dedicated group of parents with a strong desire to band together and be a united voice to represent individuals with Autism Spectrum Disorders and spread awareness. ASA’s mission is to promote lifelong access and opportunities for persons within the autism spectrum and their families, to be fully included, participating members of their communities through advocacy, public awareness, education and research related to autism
The mission of ASCEND is to raise public awareness about Asperger Syndrome, to advocate for improved education and services, and to provide support and information to the Asperger community.
Autismspeaks is another organization providing information and support to people with autism and their families.
Autismspot describes itself as a platform for the parent, caregiver, extended family, doctor, therapist, student, and person living with Autism: “We are capturing the best practices, the more than 75 different therapies, various education opportunities, resources, tools and home program ideas from around the world and presenting them in a format that is current and relevant to today’s society.”
AutismLink provides a comprehensive nationwide database of providers that support all types of therapy — speech, occupational, biomedical, and much more. They have created a comprehensive database of providers to enable families to be able to quickly and easily find practitioners of all types in their areas.
Pennsylvania Department of Public Welfare Bureau of Autism Services Virtual Training Center: This comprehensive resource center has been designed to enable professionals and families to easily access trainings, documents, and other resources in one convenient location.