As you know, TACA has made a huge difference in our lives by providing us with practical support along our journey with Quinn. TACA is run mostly by volunteers. We are families with autism helping families with autism. Every month we welcome new famiies to our education and support meetings. Please be generous and help us support more families. Many thanks -- Holly
Our Journey in Autism
It’s been four years now since I first found stories of recovery on the Generation Rescue website. As I read the testimonials on the internet, I wept. Those tears were an overflowing of my hope for my son, Quinn, and all children and families with autism. The stories confirmed for me what I knew in my heart: my son will recover from autism.
We’re almost there. Here’s a bit of our story. We share our story in hopes that it will help other families.
Quinn was diagnosed with autism right after his second birthday. At his 18 month check up he was not speaking at all, and his pediatrician asked me a lot about it. I was concerned, but convinced that it was because he was getting so much Spanish. Children who are exposed to bilingual environments often have slight speech delays, but when they speak they are able to speak both languages fluently. What I didn’t realize is that he didn’t have any receptive language either. He couldn’t respond to “touch your tummy!” or even really play peek-a-boo. Anyway, at 18 months we left the doctor’s office and I had convinced myself and the doctor that we should wait and see—if he wasn’t talking by his birthday, we’d have him assessed for a speech delay. I left with no information about autism or developmental delays at all. He could have been diagnosed at 18 months if only I had known more about autism.
But I didn’t. So he continued to fade away from us. He was sensitive and covered his ears a lot, he retreated into self-stimulatory behavior whenever he could, and he was lost in his own world. It’s so subtle when you don’t know what to look for, isn’t it? A few days before his second birthday, he was still not talking. No words at all. No eye contact at all. No imitation at all. But he was an easy baby, and had very few tantrums. He could entertain himself (i.e. stim on spinning anything and everything) for hours. He was an eloper, and he was oblivious to his peers, but he was generally happy. He was a gentle, sweet baby, and we didn’t realize how lost he was.
I went to the book store to look into speech delays, and on a whim, I picked up a book about autism. After reading the first few pages, I knew. I bypassed the doctor and went right to the State Department of Education and referred him myself for the evaluation for autism. Within three long months, he was diagnosed and early intervention services began.
Food. I have learned that food is medicine or food is poison, and there’s not much in between. He lived on cereal, wheat toast, fruit and milk. I remember being so excited when he finally showed some interest in pizza because he was broadening his food options. He could drink over 50 ounces of milk a day! As we researched autism, we found some websites that claimed that wheat and dairy could be contributing to the disorder.
We stopped cow’s milk and replaced it with rice milk. Taking Quinn off of milk made a huge difference within only a few days—it was like he came out of a fog. He was more social and engaging than he’d ever been. He seemed happier. He started bringing toys to us to play for the first time ever. So our journey into biomedical interventions began. We soon changed his diet to be Gluten-Free/Casein-Free and he continued to improve, though we made the mistake of replacing most of it with rice, so a year later his IGG test for rice was very reactive. After that test, we started a rotation diet and bought a bread machine. I invented four different bread recipes that were not only GF/CF but also free of soy, potato, corn, egg, and all of his 30+ food sensitivities. Believe it or not, we even managed to take a 3 week road trip after starting this crazy rotation diet with home-made bread (we froze the bread and bought a refrigerator for the car, and even brought everything we needed to bake bread on the road). After a year of rotating the home-made bread, labs still show big gut issues, and we cut out all bread, starches and sugars and started the Specific Carbohydrate Diet (SCD). The whole family went on the diet with good results. I cook from scratch like my grandmothers used to . We were on SCD hard core for about 6 months and have gradually eased back into the GF/CF diet. Our current diet includes select gluten free starches in moderation.
For Quinn, traditional therapies have helped a lot. The traditional therapies include play therapy, behavioral therapy (Applied Behavioral Analysis using Discrete Trial Training then Natural Environment Training), Speech Therapy, Occupational Therapy and a social skills group. These therapies have been intensive totaling 30-45 hours per week, and he has always had additional inclusive experiences with typical peers including Music Together and dance classes. Quinn began preschool at age 2 ½ in a typical preschool with the support of his ABA therapists as his inclusion classroom aide. By the time he was finishing preschool, we were able to fade the 1:1 support completely. He entered kindergarten in our private Catholic School without an aide, and he has had a wonderful year. As we are fading his ABA therapy, we are now using Relationship Development Intervention objectives to fine tune his social communication skills.
Biomedical therapies have included vitamin, mineral and essential fatty acid supplementation. We have used anti-viral medication along with anti-fungal medications. We have treated bacterial infections in his gut, and we have used several different chelating agents to remove toxic metals. We saw huge gains in his speech mild HBOT (hyperbaric oxygen therapy) which we have done two rounds of (40+ dives each round). Increasing the frequency of his methyl B-12 injections (now given daily) also helped his speech tremendously.
Here’s the some data on his progress:
At Quinn’s initial assessment, they used a variety of tests including the CARS (Child Autism Rating Scale) at age 2 years, 2 months. His score was 36, and he fell in the “Mildly-Moderately Autistic” range. Nine months later, a second psychologist gave him a score of 37 on the CARS confirming his diagnosis and need for intensive therapies to continue.
After a year and a half of intensive therapies of all kinds, at age 3 years, 8 months, his score on the CARS was 27, which actually fell in the “Non-Autistic” range. Four months later his score had again dropped to 21, another significant move in the right direction on the autism scale and far from the Autistic range. Four months after that, the CARS score was 19 (the minimum score for a typical child is 15, so dropping just a few points is still significant). While these scores do not mean that Quinn no longer has autism, they are certainly further documentation of the giant gains he has made.
In one year and a few weeks time, his speech jumped from an age equivalent of 2 years 6 months to the age equivalent of 5 years 2 months (that’s a 32 month gain in 12 months time, and, by the way, his age at the time of that assessment was only 4 years 9 months!).
Quinn has gone from a two year old with NO receptive or expressive language at all to a kid who understands EVERYTHING and can follow multi-step directions (i.e. “Go get your shoes from the garage, put them on and get in the car. It’s time to go!”). He is having conversations with his peers and expressing his wants and needs in complete sentences. He sings spontaneously, inventing songs and singing his favorites with his sister. He has taken a community preschool Spanish class and uses Spanish frequently and appropriately in his play and interactions. His imaginary play is phenomenal! His eye contact is great, and he is doing a lot of social referencing with us and his peers. Most people are shocked when I tell them that he has autism, including professional therapists who don’t know him. He is still a gentle, sweet boy, but now he’s able to interact with us and experience our world.
Some people would say that his recovering is a miracle. Perhaps it is because we would not be here without my deep faith that he would get better. But, the truth is, this miracle is the result of a lot of work. Mixing supplements and medicine and then giving him the doses every few hours. Figuring out what he can eat and shopping for it, preparing it, adapting and inventing recipes, baking and cooking. Orchestrating the insane schedule of therapies around the rest of the family and actually getting him there, on time, several times a day. Learning, going to workshops and support groups, researching on the internet, reading books, documenting his progress and working with his doctor and therapists to adjust his intensive therapies. Letting the housework go. Investing in our son’s future by spending a small fortune to help him heal. Nurturing our marriage. Finding time for myself (occasionally). Educating family, friends and strangers about what we’re doing and why.
We are living a dream. Every day Quinn amazes me, and I am thrilled to say that he is a happy kid living a full life.
I am committed to helping other families as the Co-Coordinator of the Glendale Chapter of TACA, as a Parent Mentor and as a Rescue Angel for Generation Rescue.