By Guest Blogger: Eyal Aronoff
When my daughter Leya was two and a half, Dr. Ira Lott of UCI diagnosed her with autism. She was non-verbal, had extreme food selectivity, did not complain about pain, would cry for no reason (sometimes for hours), could not follow simple three step instructions, and was unable to animate toys. On the other hand, she was a very happy kid. She really enjoyed doing puzzles. For kicks, she would simultaneously do three different puzzles from one pile of pieces. She LOVED the Teletubbies and could sit for hours watching the same episodes again and again. With the exception of her crying sprees, Leya was the easiest baby ever — she would never complain.
As young parents (Leya was our first child), you don’t quite know what to expect from your baby/toddler. We had no idea that Leya was well below where she was supposed to be. When we found out, we went through a roller coaster of emotions. Many questions popped in our head. Fourteen years ago, there weren’t many answers – an autism diagnosis was an un-appealable verdict. In other words, Leya was doomed!
Although I am not autistic, I too had difficulties as a child (surprise, surprise…) I did not read my first book until age 16. I am a terrible speller. Handwriting is particularly a torture. If the keyboard had been invented 10 years later, I might have been lost to this world. When I was a child, no one really knew anything about autism or any other learning disorders. I was just labeled as lazy: “Your son does not live to his potential. He is a smart kid, but never does his homework. You need to use more discipline, Mrs. Aronoff. ” My mom was a single mom working hard to put bread on the table, and I was a little rascal — so any increased discipline plan was doomed from the start. Luckily, something happened to me when I was a teenager. At age 16, something clicked in my brain. I clearly remember the day when all of a sudden I could read. I was “studying” for a history test, which consisted of lying in my bed with the book and dosing off to the sound of rock music (Genesis anyone?). I would normally start reading at the top of the page. By the end of the first paragraph, I would either be sound asleep or my thoughts would have taken me off into some “lala land”. History was the last thing on my mind. Then it happened. I started reading at the top of the page and before I knew it, I was at the bottom. That was the day when I started to read. That was also the day when I started to learn. The following 10 years were miracle years for me. Not only was I able to read, I became increasingly smarter. I continued to develop my brain well into my twenties, something I now call “delayed onset of brain adulthood.” I am sure that I am not the only one who has experienced this phenomenon. I am sure that many of the parents reading this blog will be able to relate to this: mediocre students in high-school, but did really well in college (particularly after some gap in years).
In my opinion, this experience was evidence of brain plasticity. Peer pressure and my own ambitions drove me to break the barriers that kept me behind. So when Leya was diagnosed with Autism, I naturally looked for solutions to trigger brain plasticity.
We tried many different things with Leya. Throughout that entire time, she was an integral part of her therapy. We explained everything to her, even if she did not appear to fully understand. With much hard work and awe inspiring willpower, Leya slowly improved. However, even with many hours of intervention, she couldn’t catch up to her peers. Everything that had to do with language was a struggle.
When Leya was 8, we stumbled upon Sensory Enrichment Therapy. At the time, the therapy was still in development, so the entire thing was highly experimental. To our great surprise, something amazing happened to our little daughter. Before starting this therapy, she was living in a semi-transparent cocoon: You could make what was inside, but the picture was blurry. After the first six months of therapy, it was like that cocoon was broken. The beautiful, gracious and happy personality of Leya was exposed to us for the first time. We continued with the therapy for a year. As time passed, even after the therapy ended, more things started to click for Leya. She started eating a diverse diet. She started reading for fun (I almost did a summersault when Leya read the first Twilight series book over one weekend at age 12 – a full 4 years ahead compared to when I was able to really read!). Sensory Enrichment was the last therapy we used, and although we homeschooled Leya all the way through middle school, when it was time for her to go to high school, she was ready.
Today, well what can I say…? I think that Leya is better than just typical. She has retained the unique way she processes language enabling her to write amazing poems and crack the funniest jokes. She has also retained her love for math and science typical of autistic kids. However, she is no longer lost in social settings. She has friends and likes adventures. I think Leya now enjoys the best of both worlds, a brilliant and unique way of thinking along with an outgoing personality. (Read about her recovery in reference 1).
Unfortunately throughout all those years, the Sensory Enrichment Therapy did not really go anywhere. There is usually some fundamental problem with many such solutions. Clinicians develop ideas and therapies. They use these therapies with their clients. Some of these clients improve. The clinicians can then claim that they have a “cure”. The reality is that no one really knows what it does, to whom, why, and by how much. Clinical trials were missing to appropriately test all the hypotheses. In turn, I decided to fund a real clinical trial for Sensory Enrichment, and I found the perfect principal investigator to do it. Dr. Michael Leon of UCI proved that Sensory Enrichment (a subset of Environmental Enrichment) can enable rats to overcome some of the most debilitating neural disorders, including mercury and lead poisoning (reference 2). It took us forever to get through the International Review Board (IRB) and even longer to find enough volunteers to participate in the trial (even though there was no medication involved). But, what surprised me the most was how difficult it was to raise matching funds for the study. It seemed that the entire autism space was dominated either by genetic studies or by those trying to find the cause of the sudden increase in autism prevalence. No one was interested in supporting the effort to quantify and legitimize effective therapies to help those kids that were ALREADY diagnosed with autism.
I kept a low profile throughout the entire time. I had no idea if Sensory Enrichment was real or if my daughter was the exception. The only evidence we had was the encouraging results of a small pre-trial published on May 20, 2013 in Behavioral Neuroscience (reference 3). Nonetheless, based on the results of the pre-trial, I decided to invest in building Mendability (reference 4), a company that provides Sensory Enrichment Therapy in the most affordable way possible. I wanted it to be accessible to any parent that needs it, but still be able to carry its own weight. This decision was not about money. This decision was made to drive treatment that many parents can receive without breaking the bank. Now I know that for some parents even $59 a month is too much, so we are working with TACA to start offering a scholarship program for Mendability (we don’t have a definite date yet as we are working through the integration issues).
I have one last thought to share with you. Depending on severity, I think that most children could overcome the debilitating aspects of autism, and just like Leya, get to keep the best of both worlds. But to get there, we, the parents of children with autism, need to take back the discussion, replace our anger with hope, and demand from the research community to focus on our and our children needs, namely practical, cost effective clinically proven treatments that can positively impact many lives.
The proud father of Leya
1) Finding My Voice https://tacanowblog.com/2013/06/07/finding-my-voice-you-can-recover-from-autism/
Editor’s Note: I greatly appreciate the Aronoff family and their efforts to help find a solution for families living with autism. It has been great to hear about many families’ treatment experiences. We have embarked on a trial of this treatment for Jeff. I look forward to sharing our findings with all of you in the near future.
Reblogged this on Everything Magical.
What is sensory enrichment therapy?
Sensory enrichment therapy = Mendability
Sensory Enrichment is a subset of a larger field called Environmental Enrichment. There is a robust research on animals that shows that particular protocols of stimulation of the senses helps mammals overcome a wide range of neurological difficulties. What the researchers did is take those protocols and customized them for human use. But since the symptoms, severity, age and progress of every child with autism is so radically different, to ensure successful results the researchers developed an expert system that customizes the therapy (i.e. the sensory exercises protocol) to each individual child.
I hope this helps,
Is this program associated with Claudie Gordon-Pomares and the MAPS/Brain Inst. of Canada?
Yes, my daughter Leya was Claudie’s patient. However, the new program called Mendability although based on the therapy that was originally developed by Claudie is greatly improved and was clinically tested by an IRB clinical trial done by an Dr. Michael Leon at UCI. Dr. Leon is a completely independent party. He is not related to Claudie or to Mendability and does not receive any financial benefit from the program.
I hope this helps,
This sounds very promising. My son is a high functioning almost 13 yr old, is there any evidence that it benefits older kids? And how long does the program last?
The study included 3-12 year old individuals with autism for their data. 42% of this group experienced significant improvement.
I know that additional resources are looking to replicate and expand this study to include children outside this age range and adults. That data is not yet available.
Parent feedback has shown this treatment has helped a subset of children older than age 12. We are looking forward to seeing more published results soon.
At TACA we will be announcing a scholarship program for families in September. There will be no age requirements in this scholarship program.
All my best, Lisa @ TACA
Thank you, that was actually my next question. 🙂
We had our daughter doing the therapy for a year. However, different children respond differently. Having said that Sensory Enrichment is not like headache medicine. Its not like popping a pill. What the therapy did is opened the door. From that point on Leya’s hard work and the dedication of us as parents was needed to get the results you can now see. When I say that the therapy opened the door what I mean is that Leya still had to learn all the things that all kids need to learn. And she was coming from behind because she had limited communication skill for half her childhood. But it was no longer impossible for her to do it. It was just hard work.
I know that this answer is more than what you asked about. But it gives more of a realistic setting of expectations.
Thank you, I appreciate your feedback and honesty. My sons days are very full and I often wonder if there is something we could do to help him get more out of his therapies.
I have hope. Thank you.
Also thank you for these efforts.
Thank you so much for your hard work to make Sensory Enrichment Therapy accessible and more affordable for other families. I have a child with Down syndrome and Autism. So the world stopped for me when I got his second diagnosis. But regardless his dual diagnosis, I keep my faith strong and with an unbreakable hope! I will definitely be looking into Mendability.
My son has a 15 year old non-verbal autistic step-son. We live in northern Minnesota. Do you have any suggestions where to start?
First step: contact TACA about getting a parent mentor https://www.tacanow.org/about-taca/parent-mentor-program/
Second step: have hope! Treatments and therapies work with all aged children. Mendability is a great option as well.
All my best, Lisa