Why I Run and Walk for Autism

Beverly Moore is Chair of the Board of Directors for the Autism Society of North Carolina (ASNC). This guest Blog includes her comments to the participants at the recent WNC Run/Walk for Autism where she shares why it is important for parents, family members, friends, and the community to support the annual ASNC Run/Walk for Autism events. The final 2012 event, the Triangle Run/Walk for Autism, will be held this Saturday, October 13, at Moore Square in Raleigh.

My husband Alan and I are parents of a 19-year-old son Kirby who has autism. Kirby cannot tell us about his day at school. He cannot dress himself. He can’t tie his shoes. But, he loves to swim, to swing in the yard, to listen to music and watch YouTube videos, including the Black Eyed Peas: Let’s Get it Started in Here!

Kirby was 3 years old when he was diagnosed with autism. Receiving the diagnosis of autism, as many of you have experienced, throws you into the realm of the unknown, the unpredictable: What is the nature of your child? What will the future hold for your loved one and your family?

It also throws you into the realm of the uncommon: Your friends’ and neighbors’ children are developing typically and yours is not. Your friends and neighbors pick up on those unspoken social cues and your loved one does not or has difficulty. The diagnosis can be very isolating.

The diagnosis can also be immobilizing. Autism is mysterious. You hear that “if you’ve met one person with autism, you’ve met one person with autism.” Autism affects each person differently. Today with the Internet, the amount of information available about autism is overwhelming. A Google search of the word “autism,” recently resulted in 76,200,000 hits. The vast amount of information on autism can itself be immobilizing, without something or someone to guide you.

When we needed support and a compassionate ear, the Autism Society of North Carolina (ASNC) was there for us.

After attending the ASNC annual conference, joining the local ASNC parent support group and meeting the Autism Society of North Carolina’s parent advocates, I found that not only was I NOT alone, but that I was in good company. The Autism Society of North Carolina gathers together parents, teachers, medical personnel, speech pathologists, occupational therapist, psychologists, and others – all smart, energetic, fun, and dedicated to helping address the challenges often presented by autism.

At its annual educational conferences, the Autism Society of North Carolina presents autism specialists not only from our state but from around the world. The conferences and other workshops helped guide Alan and I in figuring out what we could do to improve our lives and to help Kirby become as independent and as included as he is able.

The Autism Society of North Carolina was started in 1970 by parents. It was a time when children like Kirby would have been discouraged from attending public school. Their vision was to share information, provide support to one another, and enhance the lives of their loved ones as well as all children with autism throughout our state. Your coming out today to support the Western North Carolina (WNC) Run/Walk for Autism gives me great hope that the Autism Society of North Carolina will be able to meet and exceed the vision of these founding parents by reaching out to those in the western most portion of the state, where populations may be small but presence of autism a certainty. In North Carolina the prevalence of autism is 1 in 70. Thank you for your support.

In the words of my son Kirby: Let’s Get it Started Out Here!

The 7th annual WNC Run/Walk for Autism on September 29th raised over $40,000 to support individuals on the autism spectrum and their families in Western North Carolina. The Triangle Run/Walk for Autism is the organization’s largest annual fundraising event. This year’s goal is to raise over $300,000 in funding that is needed to provide services and supports to the over 60,000 families affected by autism in our state. If you have not already donated in support of our runners and walkers, please do so by visiting www.trianglerunwalkforautism.org. If you wish to participate in the event you can register at early packet pickup Thursday and Friday or prior to the event Saturday morning. Click here for more info.

Run or Walk for Autism this fall

Editor’s Note – The following Blog article was written by Heather Hargrave, Development Associate and Run/Walk for Autism Coordinator.

Lace up your running shoes and participate in the 2012 fall run/walks for autism and help us make a difference in the lives of over 60,000 individuals with autism in North Carolina. Regardless of the event you choose you will enjoy a beautiful fall day in support of the Autism Society of North Carolina, and help to provide support and promote opportunities for individuals with autism and the families who love them. This year our fall run/walks for autism will be held in Greensboro, Asheville & Raleigh. Click on the links below to register.

• Greensboro Run/Walk for Autism – September 22, 2012 – 5K – UNC-Greensboro: event website – www.greensbororunwalkforautism.com
• WNC Run/Walk for Autism – September 29, 2012 – 5K, 1K & Kid’s Dash- UNC-Asheville: event website – www.wncrunwalkforautism.com
• Triangle Run/Walk for Autism – October 13, 2012 – 5K, 1Mile & Kid’s Dash – Moore Square, Raleigh: event website – www.trianglerunwalkforautism.com

Once you have registered you can begin recruiting your team. Please help us make a difference by recruiting as many team members as possible and being creative fundraisers. Your first step is to spread the word, contact prospective team members and invite them to join your team. Then it’s time to start fundraising with your team. Donations can be made online, mailed to our local office, or handed in on race day.

Get a jump on your 2012 Run Walk for Autism Fundraising by reading the tips below:

• Start early! Once you are registered you can begin collecting donations.
• Set a goal before you start fundraising and share it with others. Let everyone you know that you are participating in the Run Walk to improve the lives of individuals with autism in our state.
• Lead by example, the easiest donation will come from you and will motivate others to donate.
• Learn about the Autism Society of North Carolina and where the money goes.
• Identify potential supporters such as your employer, family, friends, hair stylist, doctor, dentist, realtor, sorority/fraternity, car dealer, clients, colleagues, & neighbors. Ask others to help you spread the word and recruit additional support.
• Use a fundraising approach that reflects your style. Personal letters, emails, direct asks, Facebook, & telephone calls are all good examples. You will do the best with a style of fundraising that reflects your personality.
• Provide updates – let people know how much you’ve raised and how close you are to reaching your goal.
• Ask for a specific level of donation or ask that family members match your donation.
• Matching Gifts – see if your employer has a matching gifts program. If so, you can easily double your dollars raised. Companies can provide you with the simple paperwork needed to process.
• Get creative by hosting a garage sale, bake sale, car wash, or chili cook-off with proceeds going towards your team.
• Collection jar – place a jar for people to donate their spare change.
• Ask a local restaurant to donate a percentage of sales from one night to your team.
• Remember to thank every individual who helps you reach your goal. Let them know how they are making a difference and share personal stories.

Anyone can join our team and make a difference. Sign up today (by clicking on one of the event links) and begin fundraising. Thank you for your support and please contact Heather Hargrave at 919-865-5057 or hhargrave@autismsociety-nc.org if you have any questions.

1 in 88, 1 in 70, what does it all mean?

On March 29, just two days before the beginning of Autism Awareness Month, the Centers for Disease Control and Prevention (CDC) released new figures for the prevalence of autism. While no one expected a decrease, the new rate of 1 in 88 nationally (up from 1 in 110 in two years) and 1 in 70 in North Carolina (up from 1 in 97 in two years) are significant and have gathered a lot of media attention. How legislators, policymakers, and the public will respond to and make decisions with this new information is important.

Some have questioned the validity of the new data, but the numbers are real. The CDC used researchers at the Autism and Developmental Disabilities Monitoring (ADDM) Network in 14 sites across the country to conduct the surveillance studies. The ADDM has been reviewing data for nearly a decade and their methods for determining prevalence are detailed on the CDC’s Data and Statistics page. Here’s a great graphic from the CDC’s website that shows how prevalence has increased between 2000 – 2008.

Eleven counties in North Carolina were monitored by the North Carolina ADDM team in the most recent surveillance study. Their research showed that the prevalence numbers for NC were 1 in 70, well above the average prevalence of 1 in 88 across all sites. Is there clear evidence of increased prevalence in our state? Yes, and members of the autism community have been saying this for years. All one needs to look at is the NC Statistical Profile, an annual survey conducted and compiled by the NC Department of Public Instruction.

The Statistical Profile is “A collection of statistical information about North Carolina’s elementary and secondary schools. The profile provides data on public school pupils, personnel, and finances.” ASNC has monitored a section of this annual document titled “Pupils in Membership Being Served by Exceptional Children Programs” for many years. In 2000, the total of students categorized as “AU” was 2,613. In 2008 the total was 8,233, and increase of 5,620 or 215%. In addition, the number of students with ASD increased on average by 14-17% while the total statewide student population averaged a 2-3% gain during the same period. (For reporting year 2009-2010 the total number was 10,664 – Source link)

Schools are just one area that ASNC has seen evidence of increased prevalence. Another is through a jump in the number of local chapters and parent support groups throughout NC. In 2000 there were approximately 20 local Autism Society of North Carolina chapters or parent support groups that met regularly. These groups offered an opportunity for parents to connect and support each other locally. Now there are nearly 50 chapters across North Carolina. As more children are diagnosed, families are reaching out to each other and ASNC for support and resources.

This brings us back to a very important quote from the CDC report… “ASDs continue to be an important public health concern in the United States, underscoring the need for continued resources to identify potential risk factors and to provide essential supports for persons with ASDs and their families.” The CDC and DPI data definitively show that there are more individuals on the autism spectrum in North Carolina than ever before (the estimated overall number of individuals with ASDs in North Carolina is at least 60,000). Having the necessary resources for appropriate early intervention, education, vocational training, transition planning, and community supports are essential to the success of individuals on the autism spectrum.

So what does it all mean? With greater prevalence there is an opportunity for increased awareness and acceptance. There also must be greater action to provide and protect support services for individuals on the autism spectrum and their families. How will that happen? The Autism Society of North Carolina (ASNC) will continue to make the case to the Legislature, education leaders, and other state decision makers to continue to maintain and expand support for individuals with autism. ASNC will also continue to educate the public and work to increase understanding of autism so that individuals on the autism spectrum are able to fully participate in their communities. In order to accomplish these goals, ASNC needs your involvement and support in our efforts to ensure that our collective voice is heard.

The numbers don’t lie. They just illustrate what those of us in the autism community already knew: that directly or indirectly, autism affects all of us.

Helpful links:

• Prevalence of Autism Spectrum Disorders (Full Study) – http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6103a1.htm?s_cid=ss6103a1_w

• Centers for Disease Control and Prevention Autism Spectrum Disorders Data and Statistics Page – http://www.cdc.gov/ncbddd/autism/data.html

• North Carolina Department of Public Instruction Data and Reports section – Statistical Profile page – http://www.ncpublicschools.org/fbs/resources/data/

• Statistical Profile Online – Table 9 Pupils in Membership Being Served by Exceptional Children Programs – http://apps.schools.nc.gov/pls/apex/f?p=1:14:127803667733902::NO:::

Make Your Voice Heard!

There are several upcoming opportunities to raise awareness of Autism Spectrum Disorder, get information on budget and policy issues, advocate for services and supports, and educate elected officials. 

Save the Date for Autism Awareness Day!

Mark your calendars now and join The Autism Society of North Carolina (ASNC) at the for the 2011 Autism Awareness Day at the NC General Assembly on May 3rd from 8:30 am to 3:30 pm.  We will have educational programs in the morning on legislative issues and ASNC staff and volunteers available throughout the day to assist you with visiting your legislators. Telling legislators our stories is our most powerful advocacy tool. Join us in making the concerns and presence of the autism community known to each NC State Senator and Representative. Detailed information (including how and where to register) and directions will follow soon on ASNC’s website.  Contact Jennifer Mahan at ASNC at jmahan@autismsociety-nc.org or call 919-865-5068 for additional information.

Disability Awareness Day at the general Assembly is March 22^nd. The day’s events include information sharing and coalition building in the morning, as well as visits with legislators and additional coalition building in the afternoon. More information can be found at Disability Rights NC or by calling 336-767-7060 or emailing kgreenarch@theadapatables.com

The Coalition is hosting a series of Town Hall meetings in 7 locations around the state to provide information on the budget and its impact on developmental disabilities, mental health, and additive disease services. There will be opportunities for public comment. In addition, The Coalition will host their annual Rally Day on May 10^th.  More information on the town halls is located below as well as their website. ASNC is an active member of The Coalition, a group of 40 organizations advocating on behalf of individuals with developmental disabilities, addictive disease and mental illness.

We encourage you to make your voice heard any way you can!

COME JOIN US & HAVE YOUR SAY!!!

You are invited to a

Town Hall Meeting

on

Mental Health, Developmental Disability, and Substance Abuse Services

Sponsored by The Coalition

The Coalition, 40 organizations advocating together to meet the needs of North Carolinians living with the developmental disabilities, the disease of addiction, & mental illness, will host a series of town hall meetings on MH, DD, & SA services across the state. These listening sessions will:

• Provide a briefing on the current budget outlook
• Offer an opportunity to share your opinions about MHDDSA services and supports; in person or in writing.
• Update you on how to make a difference on these issues through advocacy

 

TIME:   All meetings are from 6:30 to 8:30 PM. Doors will open at 6:00 PM and the program begins at 6:30.

DATES & LOCATIONS:

March 17 – Charlotte

Myers Park United Methodist Church

1501 Queens Road, Charlotte

March 17 – Raleigh

NC Advocates for Justice Building

1312 Annapolis Drive, Raleigh

March 24 – Fayetteville

Southern Regional AHEC

1601 Owen Drive

March 31 – Greenville/Winterville

Pitt Community College

Leslie Building  - Room 143

1986 Pitt Tech Road Winterville

 

March 31 – Wilmington

Hampton Inn

2320 South 17^th Street, Wilmington

April 7 – Winston-Salem

Forsyth Community College, Main Campus

Ardmore Hall Auditorium

2100 Silas Creek Parkway

 

April 7 – Asheville

Mountain Area Heath Education Center (MAHEC)

501 Biltmore Ave