The “R” word

Those who belong to the Autism community are like a family. Not everybody gets along. We didn’t ask to be connected, but it is what it is. We don’t see eye to eye on everything. The outside world views us as a united front, but the view from inside looks different.

Being part of the Autism community can be complicated.

It didn’t take long for me to see the topics that create major dissension within the group. The line is drawn when it comes to vaccinations, treatment and the “r” word – recovery. There’s something about the phrase “Autism Recovery” that lights a fire in some folks. For some people, it’s offensive. For others, it’s their ultimate goal.

“This is how God made my child.”

“There is no cure for Autism. It’s just a way for people to get your money.”

“Trying to find a cure for Autism is like saying something is wrong with your child. There’s nothing wrong with them, their brains just work differently.”

These are usually the statements that comprise the majority of arguments for those anti-recovery. And in all honesty, I get it. I had never heard of Autism Recovery until my friend Kristen brought it to my attention when her son was diagnosed.

So what exactly is Autism Recovery?

Autism Recovery is about treating symptoms related to the diagnosis. By treating symptoms, you affect behaviors. When someone refers to his or her child as recovered, they are indicating that the child’s behavior no longer scores within the range needed to qualify him or her with a diganosis. It doesn’t necessarily mean that the “autistic” behaviors are completely gone.

Let’s be clear. There is no cure for Autism. Autism isn’t like having the flu. If it were that easy, I’m certain there wouldn’t be as many children living with the diagnosis.

Talk to five families with children who have been diagnosed with Autism, and your likely to see five very different children. Just like treatment can vary, so are the behaviors that can deem someone Autistic. The behaviors relate to speech, cognition, motor development, language, social behaviors, self-care, practical behaviors, and activity level to name just a few. The scope of what is observed by medical professionals and reported by parents, teachers, and caregivers is far and wide. So, as some of the behaviors change it makes sense that some children will naturally move up and down the spectrum as they acquire new skills or show regression with age, therapy, and treatment.

Recovery isn’t about getting rid of Autism, it’s about getting to the root of why these behaviors exist on a functional level.

Honestly, I could care less about the label. Autism doesn’t mean anything to me. What means something to me is the fact that my son scored in the less than one percentile in speech last fall. What means something to me is the lack of fine motor skills he presented. What means something to me is the lack of eye contact he showed. What means something to me is that we’re behind the curve when it comes to adaptive skills.

There are families who will never understand this crusade because they have the same label as we do, but their child doesn’t show the same deficit in behaviors. I wonder if it’s easier to accept Autism when your child speaks, when your child qualifies for gifted and talented services, and when your child’s biggest challenge is organization. I wonder if it’s easier to accept Autism at earlier ages, too. Meltdowns at age 3 aren’t nearly as dangerous as some meltdowns at age 15.

Despite the unpopularity of recovery in the Autism community, it is the path that we take regarding our son’s diagnosis. We believe there are underlying medical issues that we can treat. We are witness to the transformative power of diet and supplementation in the first 60 days. Read about Jacob’s progress HERE. We are thankful for our friends who have partnered with us in this journey. We are thankful for doctors who continue to push boundaries to seek medical treatment for behaviors related to Autism. We are thankful for the ability to share our experience with those who are interested.

Autism Recovery isn’t a new term nor it is a new science. Our doctor in Florida has been successfully treating patients since Juan and I were babies, in the 80’s. And he’s not the only one. Interested in reading more about how medical approaches can affect behaviors related to Autism? Click HERE.

For some people, Jenny McCarthy might be the face of the Autism Recovery movement because of her notoriety and public persona. McCarthy’s son, Evan, was diagnosed with Autism in 2005. She used her platform to share Evan’s recovery story, but I caution anyone who denounces the idea of recovery because of McCarthy. In reality, she isn’t the face of recovery, the only faces are those of the children who have experienced recovery. Read about their stories HERE.

It’s easy to pass judgment on something or someone you don’t know. One of my favorite authors, Brene Brown, writes often about the importance of people moving towards each other instead of away from each other. According to her, people are hard to hate close-up. I don’t think that hate is the feeling between the two factions, Recovery and Anti-Recovery, but something ugly exists. As the spotlight shines on all things Autism during the month of April, my biggest hope is that all of us in the Autism family show a little more kindness to each other.

Signed with love, Kat.

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