I once knew a mom who had a son on the spectrum. It's a familiar story. Her son was developing at normal pace, hitting all the infant milestones, walking and talking, a bright and bubbly young child. Shortly after his second birthday, reportedly within days of receiving his latest round of vaccines, he started to "regress". He lost most of the language he had gained, became distant and isolated, and developed stims and/or tics.
He received his autism diagnosis soon thereafter.
David was a changed boy.
But mom was a warrior. She studied up on every known treatment. She studied up on every diet. She did what she could to lash out and lead the fight against vaccines. She was sad, yet she had the steadfast love it takes to move her child forward in what was presented to her as a devastating and helpless future.
She was determined it would not be David's future.
She even wrote a book or two on the therapies and diets that seemed to work for her son. She lead a "green our vaccines movement". She gave a shit.
And she pissed off a lot of people on the way.
***
Years later, Dave was a "normal" boy. One of her therapies or diets (or a magical concoction of all of them) had worked. She declared him "recovered" and "cured".
And she pissed off a lot of people on the way.
***
A few months after his "recovery", she continued to promote her diet and her therapies. She continued to lead her campaigns against the vaccine industry and their puppet master, Big Pharma.
But David was recovered. He was a normal pre-teen now, a bit quirky, but definitively Neurotypical. She had no reason to stay in the pool, yet she did.She kept fighting for others. Despite the anger and hostility toward her, she remained swimming.
And many would say, pissing in that same pool.
***
A few more months go by and she reveals in an interview with a major magazine that her son had been diagnosed with something called "Landau-Kleffner Disorder", a seizure disorder marked by the loss of many developmental skills around the age of 2 or 3. The interviewer asked "So, your son never had autism, did he?"
And she defended her son. She claimed he met all the benchmarks and criteria for a spectrum diagnosis. He had been seen by many, many doctors that confirmed it. She had done all the therapies recommended by the State and bloggers and DAN! Doctors and school administrators and OTs and dietitians and healers and nutritionists and speech therapists and medicine men and psychiatrists and sports coaches possible... and not a single one ever doubted David's autism.
Until a neurologist identified the seizures.
Landau-Kleffner Disorder was simply a co-morbidity of autism... a phrase we often use.
The thing about Landau-Kleffner disorder, however, is that sometimes it simply goes away... The seizures stop, the language returns, the tics and stims go away. And anti-coagulants and corticosteroids can help along the way.
She asked, if all of the symptoms of autism go away, if none of the benchmarks of a diagnosis apply anymore, if the social skills come back... was he not cured?
And she pissed off a lot more people on the way.
***
Including this blogger.
http://phatjaye.blogspot.com/2012/05/centerfold.html
***
Years later, I was listening to her radio show and she was talking about her non-profit, Generation Rescue, dedicated to helping families with autism.
And I thought to myself... She's still fighting. She has absolutely no dog in this fight anymore, and she is still fighting.
***
And I apologize to her.
Perhaps misguided at times, but never lost passion for her son...
And all of us.
I am sorry, Ms. McCarthy. Thank you for staying in our pool.
***
ed. note - I wrote this piece tonight because we are on the eve of another World Autism Awareness Day and, if you read a lot of blogs, you're going to be inundated with anti Autism Speaks articles. I wanted to highlight other charities if you are looking for a new support system.
Generation Rescue Webpage
More about Landau-Kleffner Syndrome
