In March 2010, Autism Speaks, North America’s largest autism science and advocacy organization, launched the Autism Speaks Asperger Syndrome and High Functioning Autism Tool Kit (AS/HFA Tool Kit). The AS/HFA Tool Kit was created specifically to assist families in getting the critical information they need in the first 100 days after an Asperger Syndrome or high functioning autism diagnosis. The organization launched the AS/HFA Tool Kit in response to the rising demand for more information about Asperger Syndrome and high functioning autism. As of September 1, 2011, over 700 complimentary hard copies of the AS/HFA Tool Kit have been sent out to families of children with these diagnoses, and several thousand have been downloaded free of charge on the Autism Speaks website, AutismSpeaks.org. To view the Tool Kit directly, visit www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit.
In creating the AS/HFA Tool Kit, the Autism Speaks Family Services team sought input from individuals with autism spectrum disorder, their family members, service providers and professionals. The feedback from individuals with Asperger Syndrome and High Functioning Autism played an especially critical role in ensuring the accuracy and effectiveness of the tool kit.
The kit opens with general information about Asperger Syndrome and High Functioning Autism, addressing the definitions, symptoms and causes, as well as the difference between the two:
“The diagnosis of either High Functioning Autism or Asperger Syndrome can oftentimes feel frustrating to a parent and the child as it may seem that the terms are not clearly defined. It is essential to remember that both Asperger Syndrome and High Functioning Autism do present themselves largely the same way, and as a result may be treated in a similar way. The primary difference is that a diagnosis of High Functioning Autism requires that, early in development, the child had delayed language whereas in Asperger Syndrome, the child did not show a significant delay in language development. Compared with classic autism, children with Asperger Syndrome/HFA have IQs that fall in the normal or even superior range. To many, they may seem just like other children but not quite: children with Asperger Syndrome are socially awkward in a manner that’s not easily understood.”
The “Interventions and Treatment Options” section provides families with information on how to best help their children. This information is essential because every individual with an autism spectrum disorder is different, so some may respond better to certain treatments than others. Options addressed include Social Skills Training and Speech Language Therapy, Parent Education and Training, Applied Behavior Analysis, Sensory Integration and Occupational Therapy, as well as Medications to treat some symptoms of the disorder. The “In the Classroom” section contains critical information about Individualized Education Programs and how to access special education services to ensure that your child receives the best possible education.
One section specific to the AS/HFA Tool Kit is “Transitioning to Adulthood.” The transition period in the life of an individual with an autism spectrum disorder can be an extremely difficult time, so the information included about IDEA transition services entitlements, employment, and post-secondary education options is very beneficial to the many families entering this challenging phase.
The kit also contains a wide array of resources specific to each topic section, as well as general resources including books, websites, magazines and more. There is a clearly laid out week by week plan for the time period following the diagnosis, along with useful forms that help keep families organized and prepared.
The tool kit also addresses how the diagnosis may affect the rest of the family. It stresses the importance of remembering that though only one family member may have Asperger Syndrome or High Functioning Autism, each of the other family members is often confronted with different challenges and may need support as well. Parents, siblings, grandparents, and other family members are often overlooked when responding to the diagnosis, so the tips included in the AS/HFA Tool Kit are an extremely valuable tool for families.
Families of individuals diagnosed with high functioning autism and Asperger Syndrome in the past 6 months are eligible to receive a complimentary hard copy in the mail, along with a letter and a list of state and local resources specific to each family. For those who don’t meet the criteria for a complimentary hard copy, the AS/HFA Tool Kit is available to download in PDF form free of charge at AutismSpeaks.org, and hard copies can be purchased in the Autism Speaks store.
The AS/HFA Tool Kit contains a wealth of information to assist families during the critical time following the diagnosis of Asperger Syndrome or high functioning autism. These early days are some of the most important in the lives of individuals affected by an autism spectrum disorder and their families. The Autism Speaks Asperger Syndrome and High Functioning Autism Tool Kit is a perfect way to get informed, organized and ready for the journey that lies ahead.