My Bad-Ass Autism Survivor Story…

March 15, 2012


By guest blog writer - Julia Berle   

May 13, 2005 was a joyous day in our household.  On this day, seven years ago, our child Baxter no longer qualified for the diagnosis of autism.  He had been re-evaluated three years after receiving the label and no longer fit the diagnostic criteria. We were elated.  The countless hours of biomedical and traditional interventions were deemed successful.  This was exceptionally powerful as we had been warned (with their crystal ball knowledge) that he may never talk or be able to attend school and recovery from autism is, of course, “impossible.”

Just what does it mean to be “recovered”?

There is ample semantic parsing about this word in the autism community and beyond.  I started thinking about this and did some quick Google research.  In the world of addiction, for example, the word “recover” is also a hot-button topic.  Most references generally agree that there is no cure for addiction, but one can recover or be recovered.

What about cancer or diabetes?

Illnesses like these tend to use the terms “in remission” when symptoms are under control and managed.  With autism, however, the concept of recovery is more nebulous as the characteristics of the disease itself fall on a spectrum from the mild to the severe.  Therefore, must not recovery fall on the same spectrum?

After Baxter’s loss of diagnosis, we lived on “cloud nine” but still continued to carry an umbrella every day should an autism torrent hit our lives again.   We never let down our guard as it pertained to his health, well-being, and social/academic growth.  A few years ago, we started noticing some behavior changes:   he became more easily frustrated, angry, and anxious.  His grades began to slide and our home life became more challenging.  This grew increasingly worrisome when the family had to pick up and move to a different state.  The change in environment and schools was daunting for him and warranted the need to be evaluated yet again.  I sat at home in a self-imposed puddle of doom and gloom.  I was crazy-terrified that his recovery was merely a lovely dream.  Was it all slipping away before my very eyes?  Again?  Again??

Fortunately that was not the case.  Alas, he did receive the diagnosis of ADHD.   This was not evident to us as he did not display hyperactive tendencies.   We also discovered recently that he has a severe disability with auditory processing.  Once we figured this out we were able to make necessary modifications for him, which ultimately helped his behavior and anxiety.

But back to semantics … is this recovery?

Here’s the rub: he still does NOT qualify for the autistic spectrum.  But this kid IS vaccine-injured and that bell cannot be un-rung.   The “Normal-Kid Fairy” did not fly down and sprinkle him with “perfect” dust.  He was whacked by that vaccine club and no amount of intervention could erase that damage completely.  Now I believe, understand, and accept that his future health and happiness will require constant maintenance.  I often compare Baxter to a classic car.  Just as a high-performance vehicle requires premium gasoline, regular oil changes, and tune-ups, Baxter needs proper sleep, food, exercise, love, and ESPN to get through each day smoothly.

This is not unlike the recovered addict or diabetic patient.  Addicts do not graduate from a twelve step program.  Instead, they must utilize the tools of the program daily to stay sober.  Similarly, diabetics do not wake up and no longer need to manage blood-sugar levels.  The success of their health requires diligent adherence to the appropriate practices.

These individuals are survivors.  Baxter’s recovery also makes him a survivor — a bad-ass autism survivor (cue Destiny’s Child song…)!   He faced countless hours of therapies and doctor’s visits.  He endured years of gut pain and infections. Yet, in the face of nefarious predictions about his health and abilities he defied the odds and prevailed.  He is my breathtaking little autism survivor.

Autism is a spectrum disease, so recovery also falls on a spectrum.  To some degree, every child living with autism is a survivor.  They get up and fight every day.  They try and desire to communicate.  They love.  They do not want to live in pain, hurt, and isolation.  They work harder than virtually anyone I have ever known.  Each and every parent of a child with autism knows that every hurdle our kids overcome is a step on the journey of recovery.  With the passing of time, I feel more resolute in my promise myself that Baxter was sent to us for a reason.  He was injured — a  fact that hurts my heart every day I take a breath — and every time I let out that breath I resolve that his experience can and will make a difference.  He didn’t become a bad-ass autism survivor for nothing!