By Lisa Ackerman
Autism affects so many people that the month of April has been designated to help with increasing its awareness. I must state: if you don’t know someone with autism, I would like to meet you!! When I started giving talks 15 years ago, I would always kick off the speech with “how many of you know someone with autism?” Back then, only a few people would raise their hands. Now, my talks begin with every hand being raised after I bring up this same question.
To kick off autism action month, TACA will build awareness and activation via a press release, and social media campaign plan to support TACA’s mission and families living with autism (1.) We need all hands on deck to support this important effort.
We also are kicking off Autism Action month with dozens of family stories on this blog in April. Our goal is to feature the variety of autism family stories, their challenges faced and achievements throughout the month.
This is my 15th month of April as a parent of a child diagnosed with autism. Whatever the statistic, my son is one of the 1 in 68 in the U.S. living with autism (2.) When he was diagnosed in 1999 he was 1 in 2,500. Won’t you take action to help? We need your help more than ever. It’s time to ACTIVATE.
If you are a parent and have too much on your plate, please reach out to us. Please share this post with a family member, friend or neighbor and ask them to help TACA and support autism in honor of your child. We must drive change for our children. It is now April and just being aware is not enough.
- April is Autism Action Month https://www.tacanow.org/ways-to-help/autism-awareness/
- About autism https://www.tacanow.org/about-autism/
By Christi O’Neal
TACA Georgia Volunteer Co-coordinator
I love Friends and Family TACA Fundraising time of the year. It’s funny because I hate asking people for money. But I’ve found that by looking through old photos, like I did last year to thank people for their support, that it is like a little trip down memory lane for me, and thank God, thoughts of that trip make me happy. Not to say that the memories aren’t often of painful times, scary times, sad times. They are. But these remind me of how far we’ve come and how blessed we are.
Again, not to say we don’t still have challenges and struggles. Eric has developed Crohn’s disease on top of everything else. He still struggles mightily with anxiety. He still struggles to comprehend our confusing language with all its idioms and oddities (the more I see things from his perspective, the more I see his point!). He still struggles to hold a conversation. Sometimes, he struggles with just regular, daily activities like brushing teeth or getting ready for bed, because it triggers anxiety.
But I think back to my earlier self, overwhelmed with fear and sadness over what his future might bring. There was a long time – till almost age 4, where he could not speak! A long time after that where he could only communicate wants. I wanted to KNOW him. So long that he couldn’t be in the world without being overwhelmed. So many Christmases he couldn’t enjoy. So many gatherings or dinners we’d have to leave early. Would he ever be able to go to regular school?! Would he ever have even one friend?! Would we ever get to enjoy holidays?! Could I hold his attention for even 1 minute straight?!
YES!!!!! Is the answer, thanks to all the help, support, divine interventions, and other parents and Doctors who have been fighting for answers and hope for our kids with autism.
Remembering how I felt back then (and even feel now on some days) is what makes me love TACA! TACA provides hope, not just through Family Events, parent Mentors, and Coffee Talks, but offers REAL HELP NOW for people in the depths of their despair. We provide free access to Doctors, Lawyers, and other professionals to help these families make a real difference for their kids and their families! They go away from a meeting, conference or learning seminar armed with ideas and information that can be used immediately to help their children! Empowered! That’s the enemy of despair. They know they are not alone and they know that the future is brighter than the present for their children and their family. I LOVE being given the opportunity to be part of this mission. I know personally how much it means. We live it every day.
So I LOVE this time of year. Love remembering. Love hoping. Love seeing the outpouring of support that overwhelms me with appreciation for all the wonderful people who Do care. I never feel alone during Friends and Family. And thanks to your gifts, no one has to feel alone or helpless when they receive a diagnosis of Autism for their child.
Do something for yourself and for TACA! April is AutismActionMonth!
Family & Friends Campaign https://www.tacanow.org/ways-to-help/family-friends-campaign/
Autism Action Month & ways to helps https://www.tacanow.org/ways-to-help/autism-awareness/
By Lisa Ackerman
Back in October 2000, an email was shared to invite families to the first TACA meeting for families living with autism that would take place in November. That one email has sparked families to find other like-minded parents to find hopeful treatments and therapies for their children.
Since that very first meeting, TACA has grown from having touched the lives of 10 families to almost 45,000 nationwide. Thousands of meetings have been held by volunteers across the United States utilizing the same principles of driving families to effective therapies & treatments. One thing we didn’t expect was the need for community and with TACA we all found our community of strong parents. All of this started from my little living room.
All of TACA’s programs and services are at little or no cost to families. TACA programs have grown based on serving a community that has had little support.
The families we serve continue to motivate TACA staff and volunteers to deliver programs and services. When TACA began as an organization, autism affected 1 in every 1,000 children. Today autism affects 1 in every 68 children (1.)
TACA chapters, mentoring and many of our programs are stewarded by a small staff of 16 along with an army of parent volunteers. Our staff and incredible volunteers are the heart of TACA, all working with the goal of providing help from families living with autism, helping other families living with autism. This trained, insured and managed group grows each year.
To be part of our volunteer team of families, sign up to be a parent mentor: http://www.tacanow.org/about-taca/parent-mentor-program/
To see our accomplishments over the past 15 years:
To see how we help families:
Most foundations say they are looking forward to the next 15 years. TACA families would like to see more help for families living with autism and eventually no need for a foundation like us. There is still so much work to be done to support for families, and I can assure you that TACA will be here as long as we are needed.
Our families also want increased funding in autism research. It is still the least funded disability in the U.S. affecting the most children (1.) Families also need financial assistance to afford effective therapies and treatments. As an organization, we would love to see prevention being offered and that no families will ever go without needed therapies and services. Until then, TACA will continue to serve our mission as well as create new and innovative ways to help parents in their autism journey.
By Lisa Ackerman
About 50-75 times per week new studies on autism are released . I love that. Early in my autism journey, 16 years ago, new studies were few and far between. This week, a new study and its title caught my eye: Signs of Autism Missed More than a Third of the Time, Even by Spectrum Experts (1.)
Here is what was reported:
Parents aren’t necessarily experts for their special powers of observation, says the study’s lead author and BYU assistant professor Terisa Gabrielsen. Doctors just can’t spend as much time with the kids as their parents. These difficulties often persist until the children reach school age, by which point they may already face certain social and academic challenges.
At TACA, we provide thousands of incidences of support. In 2014, over 40,000 families reached out to us for help. What is commonly reported by parents is that they bring up concerns regarding their child’s development to their pediatrician and they must often do so several times before action is taken. This new study elaborates on this same topic:
“One of the biggest problems with early identification of autism is that many children aren’t identified until they reach the school system,” said Gabrielsen in a statement. “This means that they have missed out on some prime years for intervention that can change a child’s outcome.”
If you go to any pediatric well baby check-up appointment, you notice that the time is spent evaluating the child and listening to the parents. Parents are the best resources and witnesses to describing their young children’s’ issues and needs. This is especially true for anyone living with a child who is being evaluated for or is diagnosed with autism. The parents are the key witnesses and providers of important data.
I wrote about this earlier in a 2013 blog, “Can a 2 year old be a good witness?” (2) I think the answer is pretty obvious. But what our parent support information identifies is that parent input is often overlooked. This recent study backs that statement.
When my son lost his acquired skills, got sick and was diagnosed with autism, I knew something wasn’t right. Our pediatrician said two things: boys talk later than girls and we should “wait and see” if he catches up with his developmental milestones. About a year later he was diagnosed with autism. One valuable year was lost “waiting and seeing.”
I also witnessed my neurotypical (and amazing) daughter overcome serious medical issues. The most serious was when my daughter was 4 days old. I remember the day clearly even though it happened 30 years ago. After a busy morning, she fell asleep on my chest for her morning nap. I remember treasuring that moment as a new mom. I also fell asleep with her and not long after, I woke up sweating. I remember kissing her forehead and noticing she had a high fever. Even though I was a very young, new mother, I knew this fever was serious. Without a second guess, we raced to the hospital where she was diagnosed with bacterial meningitis. The doctor administered treatment quickly and she survived. We were very lucky. I have two incredible miracle babies who have overcome serious medical challenges.
My point in writing this is to encourage parents to trust their instincts. If something is not right, ask questions. Seek help from resources who will take the time to listen. Get help. If you need a referral, contact us at TACA. Don’t be afraid of a diagnosis. Be afraid of no action when you know something is truly serious.
The CDC states that the average age of autism diagnosis is 4 years. The average age of diagnosis has not changed despite millions spent on autism awareness and education (3.) Autism signs can be picked up as early as 9 months. It is up to the parents to drive the diagnosis where appropriate.
We know that early intervention (both therapeutically and medically based on the child’s unique needs) improves the outcome of an autism diagnosis. Recovery is possible for some (4.) Treatments are more effective when administered early, hence the term early intervention. When a child needs help it is up to the parents to push for answers and appropriate treatments. This is backed up by the study that initiated this blog:
“Parents see their children at their very best and very worst,” Gabrielsen said. “They’re the experts for their children. They can be educated about signs and symptoms, and need to help their care providers by speaking up if there’s a problem and being involved in referral decisions.”
Listen to your gut, speak up and when it comes to children, move as quickly as possible when something is not quite right. When it comes to children’s development “wait and see” is not an effective strategy.
By Lisa Ackerman
The CDC recently announced: they are stepping up autism monitoring (1.) At first, I got excited:
Researchers at 10 sites across the country will comb data from 2014 to determine up-to-date autism rates in their communities, the U.S. Centers for Disease Control and Prevention announced this month.
Then I read further:
As in the past, the 10 sites selected for the 2014 data collection will scrutinize medical and educational records for 8-year-old children in their area to determine how many fall on the autism spectrum. Meanwhile, six of the sites will also assess records for 4-year-old children.
Well, there are still a lot of individuals with autism missing from this survey– including adults and anyone who is not 4 or 8 years old. Wait a minute? Did you know autism rates are still calculated via a survey? Here is a handy graphic for how the 2014 prevalence rates were calculated. These methods are similar to the previous rate collection years.
Dr Bob Sears and I have written about this topic for years. With each announcement of an even higher prevalence, autism is not getting attention, support or resources (2.) Families are left alone. Support dwindles.
Recently, a MIT Researcher rang the alarm bell of concern. Her ominous prediction states that 1 in 2 children will have autism in 2025 (3.) Here is an excerpt:
Dr. Stephanie Seneff, research scientist from the Massachusetts Institute of Technology (MIT), made a dire prediction earlier this month during an event sponsored by the Groton Wellness organization. She said,
“At today’s rate, by 2025, one in two children will be autistic. “
This is a sobering prediction. If you have children, are pregnant or are expecting grandchildren this should be a wake up call. Let’s just look at the past four CDC surveys on autism prevalence.
Let’s break this down to something everyone understands: money. U.S. Autism costs are currently $137 billion annually (4.) Back in a 2012 blog I wrote:
It is important to note that an estimated 80% of those living with autism are ages 22 years or younger. We don’t have enough data to calculate the lifetime costs of autism. Based on what we know today, it is estimated that these costs are $3-5 million per affected individual. Sadly, with articles highlighting the tripling of costs, we don’t see this trend slowing down anytime soon.
With the recent downturn in the economy, special needs families are being hit hard; support services are drying up. Assistance for families is dwindling while the pool for those needing help is soaring. Supporting families living with autism has become harder. At TACA, we have fewer tools to assist these families than we had just a few years ago.
Here is an excerpt from a recent article featured in the Disability Scoop online news site highlighting the soaring costs of autism:
“We are paying for the costs of inaction and the costs of ‘inappropriate action,’” said David Mandell of the University of Pennsylvania, who is behind the research. “Social exclusion of individuals with autism and intellectual disability, and exclusion of higher-functioning individuals from employment opportunities are increasing the burden not only on these individuals and their families, but on society as a whole.”
At TACA, we agree. What can’t be measured is the hardship endured by families and individuals living with autism. Those costs are much higher.
What we don’t know about the next generation of autism prevalence coming up is– how will the new way autism is diagnosed affect prevalence AND how long the shift will take in the prevalence figures? The DSM 5 has now eliminated Aspergers and PDD-NOS as a diagnosis (5.)
The biggest question is this: What constitutes an emergency?? When 1 in 68 children are being diagnosed with autism and it doesn’t appear there is much concern for families and their children .What number does prevalence need to be (6?) The potential answer to this question really scares me.
Because if you don’t know someone with autism yet, just wait. You soon will.
By Lisa Ackerman
In 2014, the TACAnowblog reached over 250,000 readers. Not bad for a blog that has been in existence for 3 years.
The archives of articles are pretty amazing and always available for your review. We appreciate the guest blogs from Drs. Bob Sears, Dan Rossignol, Richard Frye, David Berger, Elizabeth Mumper, Suzanne Goh some great TACA parents, TACA staffers and volunteer coordinators.
Updates in science, how autism is diagnosed and the new autism rates were definitely the most popular entries. Just in case you missed one, here are the most popular 2014 TACA blog posts:
As we kick off 2015, would you let us know what you would like to read about next? Please share your ideas so our wonderful team can address these topics one by one.
Our goal for this blog is to educate, empower and inspire families living with autism. Help us prioritize those next steps so we can better serve you. Thanks for sharing your ideas!
by Lisa Ackerman
It’s the end of another year, 2014 is almost gone! Is it me or does it feel like only a short time ago was the 80’s? Ok, maybe not the 80’s, but time does seem to be moving faster these days.
As usual, TACA was a whirlwind of activity this past year; helping families, building relationships, and expanding our community. This could not have happened without the fantastic people dedicated to the TACA mission. Thank you all.
Since TACA’s beginnings 14 years ago, I have always sent out an end of year update. This year as usual, I would like to begin with a Jeff update—he is my TACA inspiration and keeps me going.
Jeff, now 17 years old, is a blessing to our family. He continues to make progress every year. Today, he is in a regular education 11th grade class. His strengths include Spanish, Science and an interest in biology. This year he is learning how to play the drums ran on the cross country team and loves to play golf. Jeff is still a few steps behind in reading comprehension, essay composition, abstract curriculum and math reasoning but works diligently to keep up. He always seems to rise to meet new challenges with a smile on his face and a positive attitude that inspires everyone around him – especially his mom.
Today is a big difference from where Jeff started. The professionals had dismal predictions for the future. I’m glad to share we didn’t believe them and held onto our dreams for our son. He has worked very hard to overcome many obstacles. One important lesson remains: Our kids need us to never give up. I love TACA families because they have hope and believe in a future for our all of our kids.
Now on to TACA 2015 and our 15th year! Here’s just a handful of program highlights over the past year:
- Our parent support team & volunteers responded to almost 36,000 calls (English and Spanish) for empowerment and support via phone, email and live chat. Another year’s record for TACA.
- Chapters & meetings: Our volunteer chapter leaders and key volunteers brought TACA’s mission to their community. TACA held an average of 60 meetings & coffee talks per month across the U.S.
- We distributed almost 3,000 Autism Journey Guides–free to families in need thanks to a special donor.
- 34 new articles were added to the TACA website. TACA receives an average of 85,000 unique visitors each month.
- TACA provided almost 80 medical, social skills and other community based grants.
- This year, TACA Mentors made 400 connections by supporting families needing assistance on their autism journey. This is another new record of families touched via the mentor program. TACA mentors in 7 languages.
- com had a record of 42 posts (including 19 guest posts from our Physician Advisory board) with almost 300,000 readers.
- Thousands of Facebook and Twitter posts including News stories, TACA family-friendly and allergen-free recipes, tips, and TACA stories posted daily.
This is only a portion of what TACA has accomplished in 2014. We will be publishing a full report in January. As 2014 comes to an end, TACA counts over 45,000 families affected by autism in its community. On average, TACA is providing support to almost 600 new families each month.
I know I have said thank you in general, but, I have some specific shout-outs for the TACA staff. Thank you to Jackie, Di, Stephanie, Mari, Moira, Holly, Julie, Laura, Maggie, Cindy, Janice, Nicole & Sim. Thank you to all the volunteers. Thank you to the best Board who serve, guide and fundraise to help make it all happen (Glen, Pat, Dan, Chad, Elizabeth & Robby.) A special, heartfelt thank you to our Volunteer Chapter Coordinators and Parent Mentors who serve selflessly. You are core to our mission of Families Helping Families and ensure that our programs reach many in local communities. TACA would be lost without this incredibly dedicated team of over 500 volunteers providing Real Help Now.
2014 was our 5th year for TACA’s Ambassadors and Physician Advisory Team. They support TACA in their professional circle and talk about curing autism on a regular basis. These friends have made invaluable contributions to help champion the mission.
In closing, this economy has affected TACA families and this foundation in a major way. All of us have learned to do MORE with LESS. As with all non-profits the economy has had an impact on donations. Despite this challenge, we have found ways to acquire help and continue providing our programs.
Much gratitude to the over 2,000 businesses and individuals that made donations in 2014. Our major donors include: Happy Family Brands, Boeing Community Employee Giving Fund, Dave & Buster’s, Oakley, Jack FM/KROQ, Kirkman Group, OC Community Foundation, Wal-Mart Foundation, Kohls, Hope4Hanna, Alderson Family Foundation, Bikram Yoga in Silverlake, Buchanan Street Children’s Charities, Enzymedica & Autism Hope Alliance, Volcom, Gladiator events with Dan “Nitro” Clark, Inhouse IT, Midwest Insurance, Mendability, Aronoff family, Hawaii Autism Foundation (Beautiful Son Foundation), The Carney Family, Elizabeth McCoy, Hawaii Hotel Industry Foundation, The Allyn Foundation, Microsemi, Ready at Dawn, Cellpoint, Jimmies Golf, Whole Foods, Whitehouse & Schapiro, Oxyhealth, North Virginia Rabbit Run, Roadrunner Sports, Pacific Life Foundation, Allergan Foundation, Miracle Foundation Fund, Aspiriant Holdings, Nourish Life, Operation Jack, Master Supplements and countless others. To everyone who helped us financially, thank you for always believing and supporting our mission.
And to TACA families; I know services continue to evaporate and you are struggling more than ever before. TACA will be here for you. Please keep telling us your needs and we will do our best to help fight for your children.
In closing, the hope I have for my child and all our children remains –together, we will work towards the future and create positive outcomes for all of our kids. Thank you for being a friend to families living with autism.
Happy New Year!
All my best for 2015 & beyond,
Lisa Ackerman – TACA Executive Director & Founding Board member Mom to Jeff & Lauren, wife to Glen
P.S. We need additional support for 2014. If you have a friend that would like to make a donation in your family’s honor please help https://www.tacanow.org/ways-to-help/donate/.