By Nora Heston Tarte
Contributing Writer, Kirkman® Group Inc.
Kirkman® has been privileged to work with many outstanding support groups for families that have been impacted by special needs health issues. In observance of “Autism Awareness Month” (April), this article features four outstanding national organizations that offer a wide variety of services and support for families that have been impacted by Autism Spectrum Disorder (ASD).
Purpose: In Executive Director Teri Arranga’s own words, “AutismOne is a nonprofit organization that is an educational resource for information about prevention of and restoration and recovery from autism.”
The organization has two main foci. First, it strives to prevent autism altogether through education, including how to avoid items that are unhealthful, such as toxins, and also incorporate items that are healthful, such as excellent nutrition. Secondly, AutismOne seeks to provide education that helps to restore good health and developmentally appropriate skill levels to children who already have the diagnostic label of autism.
Parent Support: AutismOne conferences offer networking opportunities for parents who wish to meet and connect. Attendees have many shared interests and similarities and can provide each other another source of information not available through scientific papers and lectures.
Something Different: AutismOne focuses on knowledge of ASD. Scientific finds, potential links and suggestions for cures or prevention are a heavy focus of the organization. In order to educate families about autism, the website offers a collection of articles at www.autismone.com/articles to help parents stay up to date on scientific findings and anecdotal information related to ASD.
Conferences: AutismOne’s Focus for Health conference, scheduled for May 20-24 in Chicago offers opportunities for parents to connect while learning about ASD and its components.
“The comprehensive nature of this conference encompasses lectures covering educational therapies; adjunct therapies, such as sensory therapy; peer-reviewed scientific research; and evidence-based biological intervention,” Arranga explains.
The organization does play host to a variety of smaller conferences in other locales, but Focus for Health is their main event. Over 150 speakers will grace the stage at Focus for Health to be held at Loews Chicago O’Hare Hotel. The 5-day conference is $99 for those who pre-register. A Continuing Medical Education (CME) program is also available to medical professionals (additional fee applies). Visit the conference website at www.autismone.org, and register at http://www.autismone.org/content/conference-membership-registration.
How to get involved: To volunteer, email firstname.lastname@example.org. To donate, visit http://www.autismone.org/content/open-your-heart-campaign.
For More Information: Visit www.autismone.org
Mission: “We are dedicated to recovery for children with autism spectrum disorders by providing guidance and support for medical treatment to directly improve the child’s quality of life for all families in need,” – Generation Rescue, www.generationrescue.org
Parent Support: The Generation Rescue website has a wealth of information for parents. In addition to grants that help with financial need, and conferences that supply their own set of benefits, Generation Rescue aims to inform parents about ASD, its potential causes and its treatment options. The site offers a tab of recommended reading as well as email updates to help parents stay in the know. It’s also a resource for learning about recovery, as well as a complementary source to Kirkman® for information regarding supplements.
Something Different: “We provide medical treatment grants for families who can’t afford it,” said Candace McDonald, executive director of Generation Rescue. Every year, the organization funds treatment for over 100 families regardless of age. The only stipulations that exist are the patient must have an ASD diagnoses, a financial need and have not previously undergone treatment.
Conferences: The Autism Education Summit, scheduled for September 25-27, allows families an opportunity to learn about ASD from a team of medical professionals. The conference, to be held in Dallas, Texas, is run by a group of doctors. It is, however, intended for parents. The conference offers a unique opportunity for experience and expertise to come together, while showcasing a holistic approach to reducing symptoms common in people with ASD.
The Generation Rescue team prides themselves on offering a conference that sets them apart. From the Physician Oversight Committee that curates the summit’s curriculum to the science-based lectures provided by field experts, the summit strives to create a platform where parents can interact with speakers, garner support, and mingle with others in attendance. For more information on the conference, visit www.autismeducationsummit.com
How to Get Involved: Interested parties can donate by visiting the website and even designate which program they would like donations to fund.
Generation Rescue also challenges individuals to get involved in the Autism Awareness Month challenge, detailed on their website. The premise is each party will choose one indulgence to give up for the duration of one month. Then, each time you cheat – such as give in to that ice cream sandwich you swore off for the month of April – you place $10 in a cheat jar. Every time you are tempted by a craving, but don’t give in, place $1 in the jar. Once your challenge is complete, donate the contents of your jar to Generation Rescue.
Be sure to download the templates from the website and follow instructions to share your challenge with social media.
For More Information: Visit, www.generationrescue.org
Mission: Talk About Curing Autism (TACA) is a national non-profit 501(c)(3) organization dedicated to educating, empowering and supporting families affected by autism. For families who have just received the autism diagnosis, TACA aims to speed up the cycle time from the autism diagnosis to effective treatments. TACA helps to strengthen the autism community by connecting families and the professionals who can help them, allowing them to share stories and information to help improve the quality of life for people with autism.
Parent Support: In terms of support, TACA offers a full-range of services available to individuals with ASD as well as the families that care for them. From encouragement and support garnered through monthly chapter meetings and coffee talks, to parent education available through seminars, lectures, clinics and webinars, TACA offers many opportunities for families to learn how best to support members with ASD, as well as support each other.
One-on-one support is available by phone, email and Live Chat. There are also support groups available in Spanish to accommodate members of the Latino autism community.
Something Different: In addition to the forms of support discussed, TACA offers a Youth Ambassador program that strives to reduce bullying of children with ASD. In teaching neurotypical individuals to support their peers with ASD, TACA aims to create school environments where children with ASD can thrive. It is important that children with ASD are able to feel safe in their school community, despite often being misunderstood.
What Sets TACA Apart?
According to Holly Bortfeld, parent support and lead author of TACA, “TACA serves more than 45,000 families directly, our programs are unique in the autism community (no one else offers all of them) and we offer monthly trainings and constant support to our volunteers nationally.”
Conferences: TACA also offers annual conferences on both the East Coast and West Coast. This year’s conferences will be held in Philadelphia, Penn. On May 1-2 and Orange County Calif. October 23-24. Each conference hosts a unique line-up of speakers.
How to get involved: TACA operates under the tagline “families with autism helping families with autism,” creating a unique platform where peers can help each other navigate the challenges and triumphs that accompany raising a child with ASD. To get involved in the organization, contact your local chapter. Contact information is available here: www.tacanow.org/contact
For More Information: Visit www.TACANow.org
Mission: “The mission of the National Autism Association is to respond to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential.” – National Autism Association, nationalautismassociation.org
Parent Support: NAA has created a host of programs aimed at supporting the families of those with ASD. Parents can find a support group to interact with in person or online through social media platforms. The website also provides a list of recommended reading to help families stay up to date on the newest interventions and therapies with the philosophy that children with ASD will progress and can recover. A list of legal jargon decoded also helps parents or guardians decipher the language used to discuss their ongoing roles in their children’s lives.
It is the direct assistance programs NAA has created that truly help parents and caregivers navigate this unique world. According to Wendy Fournier, president of the organization, the Big Red Safety Box | FOUND program “provides resources to reduce the number of wandering-related incidents in the autism community,” while “Give A Voice provides free iPads with voice output communication software to individuals who are non-verbal or minimally verbal.”
In addition, the organization runs Helping Hand, a financial assistance program that can help families fund medical treatments and therapies not covered by insurance. The website has more details of the programs available.
Something Different: The NAA places emphasis on increasing safety for those in the autism community. “Our primary focus for the last several years has been on addressing safety issues,” Fournier asserted. “We have created extensive resources to help prevent and respond to wandering incidents. We educate and train families, school administrators and first responders.”
Conferences: The NAA hosts an annual conference each fall entitled NAA’s National Autism Conference. NAA boasts the “best of the best” for conference presenters and topics with a mix of cutting-edge research of environmental toxins, dietary interventions, legal and legislative strategies and estate planning. It’s a one-stop shop for caregivers of those with ASD.
This year’s conference will be held at the resort on St. Pete Beach in Florida November 5-8. The resort is autism-friendly.
How to Get Involved: Interested parties can contact NAA through the website: nationalautism.org, write to email@example.com or call toll-free at 877-622-2884.
Under the “Ways to Give” tab there are instructions on how to donate and become a member, sponsor or partner.
For More Information: Visit, nationalautismassociation.org