Our ASD Playbook
The 5 keys to our son's success
If you or someone you know is affected by Autism Spectrum Disorder (ASD), this blog post explains our (successful) playbook.
This is our son, Maddox.
In early 2018, as he turned two years old, his development was lagging. When he was around 18 months, he would attempt to say a few words, but by 24 months, he was essentially non-verbal.
He began working with our local county services ("Help Me Grow") for what we thought was going to be speech services. We soon came to realize a few other indicators that were a little "off." We also had Maddox's hearing checked as that is sometimes a cause for speech and other delays.
We didn't consider autism - the thought didn't even cross our mind.
"Kids with autism have major sensitivity to texture, they don't make eye contact, they don't like to be touched, they can't stand loud noises, etc.," we thought. If you don't know much about autism, you probably have developed your own thoughts and ideas.
This is a video of Maddox a few weeks before he was diagnosed with ASD. Notice that he is hyper focused on Lightning McQueen (the car), jumps a lot, and is non-responsive to my questioning.
Maddox at Disney in March of 2018
We were lucky in that our sister-in-law has worked in the Center for Autism at the Cleveland Clinic for more than a decade. She very delicately told us that we may want to have Maddox tested for ASD. We did so, and on March 12, 2018 - exactly 2 years to the day of this blog post - Maddox was diagnosed with ASD and a speech and cognitive delay.
That's what I remember hearing from the doctor at the Cleveland Clinic during the diagnosis meeting. 8% of kids that are diagnosed with autism are able to develop such that they are no longer considered on the spectrum.
Once we scraped ourselves off the floor, we set out to build a gameplan to give Maddox the best chance at being one of the 8%. This is that plan.
The #1 contributing factor to Maddox's remarkable development has been early intervention. By that, we got him started with everything outlined below as soon as we possibly could.
There is a tremendous amount of brain development that occurs early in life. We believe that early intervention enabled Maddox's brain to develop new pathways that have set him on a much healthier course than had we done nothing.
When our friends and family comment on Maddox's development and ask what made such a big difference, our answer is always, "early intervention."
THIS IS WHY YOU SHOULD NOT BE SHY if you have a friend or family member who may be ignoring the signs that their child may have ASD. As parents, we see the best in our kids and are often blind to their weaknesses. Speak up - even if it might be upsetting to them. Speak up for the sake of the kid.
The 5 Keys to Maddox's Success
1. ABA SERVICES
The second thing I remember about the diagnosis meeting was the doctor's emphasis on the need to get Maddox ABA treatment as soon as possible. She recommended 30 hours per week of intense ABA.
Think about that for a minute... 30 hours per week.
We started in-home ABA services with Nationwide Children's Center for Autism (Columbus, Oh) in June of 2018, which was 3 months after the diagnosis. While this may seem like a long delay - especially given how crucial early intervention is - we were extremely fortunate to get a team assigned so quickly. Often times, families must wait over 8 months after diagnosis to get a team. We are working to solve this, but that's another blog post.
Maddox's ABA team worked with him 5 days per week, 5 to 6 hours per day (split into two sessions) in our home. What we thought would be intrusive and overwhelming turned out to be outstanding. Maddox's team members have been amazing. They did a great job adjusting their ABA plan to a more play-based structure to accommodate Maddox's needs.
As Maddox progressed, we trimmed his ABA from 30 to 12 to now 6 hours per week. Maddox's development has come so far and he is doing so well that he will no longer receive ABA starting in May 2020.
ABA services are essential to establish a baseline of development.
2. SPEECH AND OT SERVICES
Maddox receives speech and OT services from Pediatric Therapy Partners (PTP) in Lewis Center, OH, which is just north of Columbus.
PTP is outstanding. Before starting services, we met with PTP's founder, Kay Born, to discuss Maddox's strengths and weaknesses. Kay explained how, sometimes, kids have trouble speaking because their bodies are out of sync. We believe that she was spot-on.
Maddox has 2 speech and 2 OT sessions per week. Since beginning service at PTP, Maddox's speech has taken off and he is now age-appropriate. He has also come a long way in the areas they work on for OT. And now his self care and behavior is age-appropriate.
Many kids with ASD suffer from mental roadblocks. The experts at PTP help kids work through those barriers. We strongly recommend PTP.
Immediately following Maddox's 3rd birthday, he was enrolled 4 days per week in our public school (Olentangy) preschool. He was placed in a blended classroom with six typical and six kids with disabilities.
We saw an immediate improvement in Maddox's development because he was exposed to classroom structure, being away from his family and being surrounded by peers.
Preschool has been very positive for Maddox as it exposed him to other kids and his teachers have been phenomenal.
4. GLUTEN FREE DIET
When I first read Brain Maker by David Perlmutter, it opened my eyes to the concept of our gut health impacting our brains.
My wife and I initially disagreed about shifting Maddox to a gluten free diet. She didn't want him to feel like an outcast.
"He already has so much to deal with. I don't want him to be the only kid who can't have a cupcake at school."
We decided that his development was most important and that we'd sacrifice all of the cupcakes in the world if it meant he had a better chance to develop.
It was a great decision.
If you haven't tried removing gluten from the diet of a person with Autism, I recommend that you do. Our youngest daughter, who just turned two, is also gluten free now and her development is advanced.
There is some very promising research in the field of gut health and ASD. Here is one of the studies. We had Maddox's microbiome sequenced and plan to explore fecal transplants as they become more mainstream.
5. OLDER SIBLINGS
Obviously this is not something that you can control, but if your child has older siblings, it's a big help. Kids just know how to play with toddlers in ways that adults can't. Often times, older siblings challenge younger kids more than parents feel comfortable doing.
If you don't have older kids, do your best to find some (if you can). Our oldest son, Spencer, has always connected with Maddox more than anyone else. We credit a lot of Maddox's development to Spencer's efforts to make learning and playing fun.
At first, I despised the word autism. I would say, "how can you categorize a group of people that are so different in their strengths and weaknesses into one name?"
There are as many types of autism as there are grains of sand on the earth and no two people with ASD have identical challenges.
Then it hit me. It's actually brilliant.
The word/category "autism" is really for insurance.
If every ailment was broken down separately and each group had to fight its own battle to get insurance coverage, the insurance companies could defeat each of them. However, by joining together, families are able to fight on a large, united front.
This strategy, along with many people's tireless efforts and unquestionable resilience, has led to insurance companies to provide better ASD services coverage. There is still a ways to go, but the momentum is headed in the right direction.
We are extremely fortunate in that I am able to select the insurance policy for my company. When Maddox was diagnosed, I asked people at the Cleveland Clinic and at Nationwide Children's Hospital, "what is the absolute best insurance policy for families with children with ASD?"
No one could give me an answer. After a lot of digging, I found what I believe to be the best insurance plan for ABA coverage: United Healthcare - Choice Plus
100% ABA coverage with no out of pocket. $15 co-pay for speech and OT services. However, the plan is expensive. Our family pays about $30k in premiums per year for this policy.
I'm happy to provide additional details to anyone who asks. Just DM me.
Working towards 8%
Only two years after being diagnosed, Maddox barely classifies as being on the spectrum. He no longer has a speech or cognitive delay, attends pre-school and, for all intents and purposes, is a typical 4 year old.
Our fingers are crossed that he will continue to develop at the pace that he has over the past two years. He is the sweetest, most fun kid in the world and we are very grateful for not only his providers, but also all of our family and friends who have helped him (and us) along the way.
Below is a recent video of Maddox at the same place in Disney as the video at the beginning of this blog. As you will see, he has come a long way. He still loves Lightning McQueen!
Maddox at Disney in March of 2020
All of this being said, we know families that have done more than us, started services earlier in their child's life and unfortunately have not seen results. This is certainly not for a lack of effort. There are many families that are desperate to help their child and they have spent a fortune seeking help.
We consider ourselves extremely lucky. We don't know how much of Maddox's progress is attributable to the various things that we have done and how much is due to his natural development. There are a lot of variables that come into play - many of which are/were outside of our control.
Having a child with ASD has certainly made our entire family more empathetic towards people that are "different." It has also opened our eyes to how many families struggle every day to try to help their children. This blog post is our attempt to share a few things that worked for our son.