By Guest Blogger: Holly Riley
In November I spent four whirlwind days at the Autism Research Institute’s conference in Las Vegas. This was not a vacation. The ARI conferences are intense and full of information, and I was volunteering as a Parent Mentor at the TACA booth and Coffee Talk meetings. So when I wasn’t in a lecture about the complex medical disorders that our kids on the spectrum often have, I was talking with people from all over the world about how to help our kids. This isn’t the first such conference I have attended, nor will it be the last. I knew this would be an exhausting weekend, and I had realistic expectations about how much rest I would get (none), how much I would learn (more than a typical college course), and the emotional commitment it would take to talk with parents new to this journey (true empathy).
I knew what I was getting myself into, but I still had a surprise. I left with something I didn’t expect: autism in the past tense.
If you know anything about my son’s journey with autism, you know it hasn’t been easy, and it is far from over. Quinn is still has several medical problems and needs a special diet, supplementation and medications to manage his immune dysfunction and subclinical seizures. We all have worked very hard for many years, and he is doing amazingly well. We are living a dream. Quinn has his quirks, and I know the many challenges he still faces, but he’s doing exceptionally well. He is truly in the least restrictive environment for school-he attends our parochial school with his sister, the school he would certainly have attended if he had not become ill with autism.
At the conference, on Sunday morning I had the opportunity to see Dr. Kenneth Bock give a presentation entitled, “Autism is Treatable: Perspectives on Recovery”. I read Dr. Bock’s book Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies when it first came out. It was right at a time when I was connecting the dots between my son’s autism and my daughter’s allergies and asthma. His book convinced me that we were on the right path to treat the underlying causes of our daughter’s asthma rather than just accept it as a life-long condition that would require medication. This is a doctor I really respect. I was excited to see him speak, but when I sat down in the session, I wasn’t expecting him to change my perspective on my own experience.
He started with three definitions of the word recovery. Quinn fits all three. He went over special considerations for recovery in autism and said: “To be considered “recovered”, the child must now be learning and applying a core set of skills at a level and with a quality that reaches the trajectory of typical development in most or all areas.” Quinn is getting all A’s and B’s in a Catholic grade school with no special aids or support. (He might be getting a “C” in handwriting-ask me if I care!). He is winning medals on the school swim team. He loves to play video games and to play at the park with his mutually declared best friend, and he loves to travel. He knows all about his experience with autism and talks about it as something in the past.
Finally Dr. Bock proclaimed: “Furthermore, the recovered individual no longer meets criteria for any ASD.” Only few weeks before going to the conference, I got the psychological report that proves this one. And the evidence came from a very impressive source: The National Institutes of Health. Quinn participated in the “Remitted Autism Study” which looks at kids like Quinn who have recovered or nearly recovered from autism, and the results of this study have not yet been published. These assessments were top notch, very thorough and administered by some of the best psychologists in the country. These were the results I’ve dreamed about getting since the very beginning, since I found out that some kids recover.
To be honest, I read it and tucked it away as just another piece of evidence that he is doing better. For me accepting recovery is harder than accepting the initial diagnosis. When you’ve been on this journey for a few years, you know that nothing is certain.
His assessments put him in the “average” range for everything. He was mostly well above the 50th percentile with a few exceptions, but even those few lower scores were well within the average range. Believe me, I know all about low test scores. To give you some perspective, his initial evaluations done when he was two years old were in the single digits, probably because he had zero words and no receptive language. His language score at age 2 were abysmal, but after 18 months of intensive therapies and biomedical interventions, and what we felt was real progress, his language at age 3 years 8 months still only fell in the second percentile. Ouch. So seeing his recent scores at age 8, all double digits and all within the normal range, is still a bit of a shock.
He no longer meets the criteria for ASD. I saw it in black and white but wasn’t quite ready to let that report change the way I spoke about our experience. For years I have been talking about my son’s autism in the present tense. Even when I arrived at the conference, I was still saying things like, “My son is nearly recovered from autism.” Or “My son is recovering from autism.” After hearing Dr. Bock’s presentation, and after speaking with so many families who are facing the daily challenges of life with autism, I realized that I need to speak of Quinn’s autism in the past tense.
It’s a very strange feeling, but I finally can say, “My son is recovered from autism.”
Editors note: Holly is a long time TACA volunteer and the co-coordinator for TACA Los Angeles/Valley Chapter. We appreciate her efforts and for sharing Quinn’s story. We also thank the lovely Fiona for her sisterly love.
More recovery stories can be found on the TACA website: https://www.tacanow.org/category/family-stories/recovered-from-autism/