By Lisa Ackerman
Hi April! You’re back! My 17th autism awareness month is kicking off in hours. (Yes, I am tracking the hours!) Here we go again! This is a great opportunity to dig in, inspire and motivate our community to move awareness into action for this April.
Many diseases and conditions have a designated month where people can build awareness and move things forward for important causes. Autism has April. For 17 years, TACA’s staff and over 700 volunteers and counting across the U.S. do their best to build awareness around autism so our communities will have a better understanding.
With many of the stories that result from the hard work, we will see a parade of “feel good” autism stories in April. We need these stories of hope. But sometimes these stories of hope make autism look ok, almost like no help is needed. In today’s age many of us are drawn to happy ending stories featuring individuals with autism making that game winning free throw, becoming part of the prom court and getting an academic award. The other side of the news may be focused on building the media’s version of autism awareness, making the rate not seem so high or justifying the rate of autism increase over the past 30 years due to the expanded diagnosis criteria. Or explaining we are just better at diagnosing than we were before. Whenever I see this news I think about filtering. You can make anything look good with the right filter.
Autism has good stories – thankfully. But we also know autism has a lot of heartbreak. The challenges the families TACA serves the last 17 years, 365 days a year is something I never understood until I lived autism. Then my understanding grew ever so more working with thousands and thousands of families living with autism. The myriad of issues they tackle each day is enough to bring a typical family to their knees. Most (and we are glad) families don’t know that autism costs the average family $17,000 out of pocket per year. They have never experienced a multi-day IEP where every detail about the weaknesses their child faces are paraded while the fight for services is a giant compromise from hours to minutes. Many families face complex medical issues including years of sleep deprivation and co-morbid medical challenges such as seizures, immune disorders, gastrointestinal distress, metabolic challenges and mitochondrial dysfunction. Not only can most families living with autism correctly spell these labels, often they can describe them better than some of the doctors they frequently see. They also read the latest studies that are published on autism treatments about 50-75 a week. I can go on. But I will stop here.
This is why the AUTISM UNFILTERED campaign was created. Every day autism IS SO FILTERED and limited to a small perspective. We will take this month of April to share family stories about autism with filters from many perspectives. We will share the good, the bad and the challenges so folks not facing autism can obtain a better glimpse and hopefully be inspired to help the 1 in 68 living with autism up from 1 to 2 in 10,000 in the 70’s (1.)
We need to share so people outside the autism community understand that the annual costs to U.S. tax payers is roughly $268 billion a year with increases every year (2.) The annual costs is projected to be over $1 trillion by 2025.
We will share so people outside our community will be inspired to help. We need the help. Autism is the least funded disability in the U.S. effecting the most children (3.) So the cause is a good one and every bit of help will make a difference.
Mostly we share it so parents can speak their truth without a filter. They have their opportunity to share their story about their beloved child to and be their voice.
This April, TACA needs your help more than ever. Whether you are a business wondering how you can help, an individual looking for inspiration and a good cause or a family living with autism every day – we have tools for you to activate.
Here is what YOU can do. THREE ways to help TACA continue to help families:
Family & Friends Campaign- Tell your story! It will inspire others. TACA provides a platform for you to tell it. Sign up, put as much or as little of your autism journey into words, add a photo of your child and join the hundreds of families raising awareness and funds for TACA this April. A great part of April for everyone involved with TACA is reading these family stories, watching their videos and hearing about how TACA has helped their family. To get started fundraising or to check out family stories: http://www.tacanow.org/ways-to-help/family-friends-campaign/ .
Jeans Day for Autism – Jeans Day for Autism is April 14th. But it can be any single day or series of days that allows companies, employees and employers to demonstrate their commitment to families living with autism. On April 14 or designated Jeans Day for Autism dates, businesses will allow and encourage employees to go casual for a cause in return for a charitable contribution to Talk About Curing Autism. And TACA has everything you need to get started: http://www.tacanow.org/ways-to-help/jeans-day-for-autism/ .
#AutismUnfiltered – Take part in TACA’s social media campaign. Change your profile picture, add a graphic to your email signature or where ever you can! Add a little #AutismUnfiltered where people will stop and consider it. Why #AutismUnfiltered? The autism journey is difficult, it’s TOUGH for our families and especially for our kids. On the flipside, with everything our families and kids endure, overcome and accomplish, they become tough and strong. Use TACA’s graphics! You’ll find them here: http://www.tacanow.org/ways-to-help/autism-action-month/
Don’t waste the month of April. Activate. Take the time to move the autism community forward now. Once your circle of friends and people you know become aware about autism, allow them to activate and show their support. TACA needs their support because there is much work to do beyond the 30 days of April. TACA is here for families who need our help. We are here and won’t give up.
- Autism Action month http://www.tacanow.org/ways-to-help/autism-action-month/