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/.
By Lisa Ackerman
TACA just finished our 14th year this past month. I am so pleased by the many accomplishments we’ve been able to achieve over the years, now serving 45,000 families across the U.S.
I am so very proud of the small staff and army of volunteers that deliver services with the focus of helping one family at time. Without them, there is no TACA.
If you haven’t had a chance yet, please view our 2013 accomplishments and annual report (1.) I cannot wait to share all of our major milestones from 2014 in January.
In anticipation, an incredible achievement for this year involves the number 8. Eight might seem a small number to some, but in my mind it’s a milestone larger than Mount Everest. The number 8 is huge. In 2014, we saw 8 TACA kids graduate from high school and move into college with the hope of promising futures.
I cannot help but marvel: These are eight kids and families that were given little help and hope but achieved a major milestone.
8 kids that will share incredible gifts with the world.
8 families excited about their next steps.
8 individuals that did the seemingly impossible feat.
It’s not secret: I believe in children with autism and write about it often (2.) I know that investing in them today by believing in therapies and medical treatments unique to their needs will help lead them to a brighter future. I believe in recovery and a future full of great possibilities (3.) This video says it all (4.) Autism does not have to be a game over diagnosis, it is game on. I encourage families to see the opportunity for their child living with autism. I also encourage them to reach out to TACA for help.
Sadly, some individuals will not recover from autism and unfortunately, there is no way we can predict that outcome. But I DO believe that all individuals can make progress toward leading a fulfilling life. All individuals deserve the hope and chance to improve their condition. I am committed to keep looking for answers to help all TACA families — ALWAYS.
In celebrating the accomplishments of these 8 kids, we also double down on our efforts to help families with what they face on their journeys. We have much work to do to help all families living with autism.
I am so proud of these 8 kids! I send congratulations to their families but most of all, I bow down to these amazing individuals that are carving a path for thousands of brighter futures behind them.
I cannot wait to share the 2015 number!
And don’t forget Christian’s great commencement speech (& photo!)
(Special thanks to the families sharing their private photos as our inspiration. 3 families would like to remain anonymous.)
By Lisa Ackerman
At TACA, we LOVE to share and celebrate the accomplishments of our kids, young and old!
Every year, we ask families to share a photograph of their child (yes, adults are children too!) and tell us about something cool they accomplished during the year. Our kids work so hard learning and overcoming obstacles, be it big or small, we want to share in the celebration.
Check out some of the incredible things our families told us about in past years:
To ring in 2015, we are asking TACA families to share 2014 celebrations. Here is what you need to do:
TACA Families Celebrations 2014
What are you celebrating this year? It may be a huge milestone or it may be something small. No matter the size, TACA gets it! Take a picture that shows us what you’re celebrating this season so TACA families can celebrate with you!
Email your pictures to Holly@tacanow.org and tell us what you’re celebrating. Don’t forget to tell us your child’s first name. One photo per child only, please!
NOTE: We will start running the pictures starting December 27th on TACA’s Facebook and FlickR pages to help ring in the new year (1.)
I love seeing these pictures and stories of some inspiring kids making milestones and melting our hearts. These kids are my heroes. I cannot wait to see your story and accomplishments for 2014. We will be sharing these on TACA’s Facebook page and Flickr account for all to enjoy!
Happiest of holidays, Christmas and new years to your family –
1 – Resources:
TACA Facebook: https://www.facebook.com/talkaboutcuringautism
By Lisa Ackerman
#Giving Tuesday has been a relatively new thing since 2012 having a wonderful impact on individuals with its main goal of promoting philanthropy.
The holidays can be a frantic time for all, especially for families living with autism. But, I have an idea. The old adage – the more you give, the more you get works really well during this time.
There are three ways to give more of yourself this #GivingTuesday:
If you are a friend or family member to someone with autism – show them you care. Please check out “Ten ways YOU can help a family living with autism”.
If you can, TACA needs help. We serve 45,000 families and add approximately 600 new families per month. Here are five ways to show love for many TACA families:
- Donate by making a donation in the child’s name
- Give a gift of appreciated stock/mutual funds
- Shop & Support for aides or tutors and family members
- Give a TACA + membership to a family in need
- SHOP through Amazon Smile
For details on how you can help by using any of these five ways to donate: https://www.tacanow.org/support-taca/ .
If you give of yourself on #GivingTuesday, please take a picture and share it via Twitter or Facebook with #GivingTuesday and @TACAFoundation on your picture. We want to share those incredible gifts and inspire others to do the same.
For TACA families who are overwhelmed by the thought of adding one more thing to the “to do list” and need help themselves, I am asking you to BE BRAVE. Share that YOU need help by emailing the link to this blog article, share your story. Send it to a family member, friend or neighbor asking them to participate in #GivingTuesday by helping your family. You will be doing the most important “give” of all by reaching out to others and promoting greater autism awareness.
It is easy to make a difference while enjoying the holidays. Thank you for being a friend to families living with autism. Remember, the more you give, the more you get.