I breathe autism.
I eat autism.
I drink autism.
I live to fight it and to win the battle.
So why am I so speechless? I should be celebrating today’s news and jumping up and down with joy. Why do I feel so confused when we’ve kicked autism in the butt so early in the game?
Today, May 19, 2010, marks the end for us of two long years of early intervention under the guidance of the University of Washington Autism Center. We moved across the country in 2007 so we could get on a waiting list to obtain an early diagnosis for our son, Frankie, and to learn the next step for this lifelong journey. Today, we got more than what we had been hoping for; besides a tentative label for his forehead reading: PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) we also got the news that he was no longer considered autistic, per se. In order to explain this better, we were told that if our kid had cancer, he would now be in remission – so, we needed to watch it, keep it in check, be aware there could be a regression if a big crisis would arise, if stressful situations involving big changes or social challenges ever took place. But for now, it’s all good … it’s all too good.
So, if this analogy is right, does that make Frankie an autism survivor?
Personally, this information creates a big paradigm shift for me. I have spent the past 30 months learning to accept the reality of Frankie’s autism and brainwashing myself to deal with it for life. Ever since we contemplated the possibility that our youngest son had autism, I was scared of the unknown. I made it a point to know. I promised myself that if I knew enough, or in my case, more than enough, I wouldn’t be scared to take on the fight. I’ve always believed that ignorance holds you back and that knowledge is power – so that’s what I did: I learned. Autism became my thing – I learned to listen, I learned to process, I learned to research and I became a pro at it. Name the website of the month, I knew it. Name the event of the week, I knew it. I was informed and on top of it. I gave the early intervention of my child the highest priority in this family. Our lives revolved around the parent training sessions, the intervention schedules, the evaluations – everybody was on board and there was no other way. No long vacations were allowed; we had sessions in the middle of snowstorms, hail and rain – not a minute went to waste. The efforts paid off but the reward was more than we bargained for.
Then, why on Earth am I so shocked at what I heard today?
Perhaps I’m shocked because I never really expected to win the battle?
Perhaps because now I’m left without a purpose, without a mission?
Maybe because at one point this became more about me than about Frankie?
Is it because I feel that we belong in the autism community and we will have no identity left once we are out?
I’m not sure of the reasons of why I feel so surprised at what the future holds for Frankie. The truth is that I just wished for him to survive and now I’m told that he can thrive and this is hard to process. I am, once again, scared, but this time I’m scared to take on this new reality and truly enjoy it because it seems so unreal. Could it be really happening? How did it happen? What did we do differently? Why can’t this be the outcome of every family living with autism? What is that magic ingredient we found without knowing?
So many questions are dancing in my head and are making me dizzy but one thing remains very clear to me; the sky is the limit when you reach for it and there is always a light at the end of the tunnel. Our tunnel was shorter than other families’ tunnels but it was indeed a tunnel and it was very dark. But the light at the end is so bright, I might need to wear my shades all day long!
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our 17th item, Recovery from Autism Spectrum Disorders, is from Autism Speaks’ Top 10 Autism Research Events of 2008.
For decades, autism spectrum disorders have been assumed to be life-long conditions. Recently, evidence has begun to emerge suggesting that a significant minority of children with well-documented autism spectrum disorder (ASD) can recover; in 2008 the first research publication to define and review recovery was released, placing the percentage of children who recover in the range of 3-25%.
In December 2008, a team of researchers from the University of Connecticut and their colleagues published an inspiring and provocative article documenting cases of recovery in autism. Recovery was defined as previously having had clearly defined ASD but currently no longer meeting criteria for any ASD. Furthermore, the recovered individual is now learning and using skills with a “quality that reaches the trajectory of typical development in most or all areas.” Using these criteria, the research team documented and followed a group of children, now between 8-18 years of age, with a history of ASD who are now “recovered.” The authors point out that children who recover from autism may nevertheless be at risk for other challenges, such as subtle difficulties with some aspects of language, anxiety, or learning disabilities.
In a previous study, the same researchers reported several cases of ASD that evolved into ADHD with no autism. Interestingly, most of these children had evidence of early regression and recurrent ear infections. Most had also received early intensive behavioral intervention. Recent outcome studies have shown that core symptoms of autism tend to improve by adulthood, especially difficulties in the areas of communication. Several outcome studies have found that about 10-20 percent of adults previously diagnosed with ASD no longer meet criteria for the condition.
How can recovery occur? One clear possibility is that successful treatment moved children who had ASD off of the spectrum. However, as the researchers point out, since most children who receive even the best and most intensive intervention do not recover, treatment alone cannot be the explanation. Both treatment and inherent characteristics of the child are likely to explain recovery. The research team therefore looked for child characteristics that predict optimal outcome, identifying higher IQ, receptive language ability, verbal and motor imitation, motor development, and an early age at diagnosis and initiation of treatment as promising predictors. In the majority of studies that report recovery, behavior intervention was used alone or in combination with other therapies.
The authors point out that although early intervention is associated with optimal outcome, this fact should not be used as an argument against the need for intervention in older children in light of the growing evidence of brain plasticity throughout the life span. Finally, this thoughtful article considers a wide range of biological mechanisms that may help explain the process of recovery. Future research directions will now provide us with insights into ways of improving the outcomes – and the chances for recovery – for all individuals with ASD.
Update since this story was first run: In 2009 researchers reported in the journal Pediatrics that they had used the National Survey for Children’s Health, a voluntary, parent-reported survey, to examine ASD prevalence in the US. Among other surprising results, they discovered that a substantial portion of parents reported their children had previously been diagnosed with an ASD but did not currently have the condition.