A guest post by Mary Romaniec of Victory Over Autism
Dear Toni Braxton,
I see that you are dealing with an angry mob after declaring your son was recovered from autism. Keyboard warriors get in an uproar at the mere mention of autism being anything but a different state of mind that needs acceptance.
Unfortunately, Toni, I feel your pain. You see, for the past 13 years my son has also not met the diagnostic criteria for autism either (pssst…he recovered too). But as you know, for some people that’s a bad thing. The worst part is that much of the discourse comes from within our own community…other autism families.
So as you deflect comments like “He must not have had autism to begin with” or “Without a doubt he is still fully autistic” just know that your son will be the testament to the truth as he continues to defy the odds. My son too.
Thank you for telling your story since it changes the understanding of what is possible. In spite of all the naysayers, there are dozens of other parents who are sparked to wonder if it might be possible for their child too. That alone means they will start looking, which may indeed lead them to answers.
And when you head off to college tours, I hope you take a pause at the milestone, and what it means to the families who look at your son as a beacon of hope.
Right there with you.
But here’s the thing they don’t know about us: we were not just the lucky mothers whose child whimsically overcame autism. We didn’t nuance the diagnosis to be something else. When we were going through hell at seeing our child suffer we had no way of knowing that we would one day have to justify the motives for our actions. Like you, I have been accused of seeking pseudo-science methods for treating my son’s autism to “cure” him. You and I know that nothing could be further from the truth. We were seeking treatments to heal our children from the underlying immunological issues that led to their autism in the first place.
And like you, no matter how many times our story is told, retold and applauded, there is a crowd standing by admonishing us for even daring to challenge the “no hope, no cure, so don’t bother” perspective.
You see Toni, I have come to realize for some we are a threat: A bizarre, twisted version of a threat because we poke the eye of those who have chosen the path of least resistance. They are the ones that would like us to just accept autism as a gift, discounting the pain and suffering as just “one of those things”. But you and I and countless other parents have taken a different approach, and that is the part they are upset about.
Can you imagine if our children had another disorder like diabetes, sickle cell anemia or even cancer? We would be celebrated for seeking treatments and therapies for our children, and not even questioned if some of them were outside of mainstream medicine. But this is autism. We are relegated to being parents in denial instead of warrior parents who chose to do the work.
And even when we produce a link to the National Institute of Mental Health study that quantified the children that could recover from autism we are told that our children outgrew autism. Or as one neurologist told me, “Some of these kids just snap out of it.”
Yessiree, Toni, we are now dealing with a whole new battle. There is a clear dividing line developing in our community as to which way we will choose to deal with our child’s diagnosis. Admittedly, when I heard you signed on with Autism Speaks I was deflated for you. Immediately I pictured you would choose the path of least resistance since AS seems to support that perspective…at least outwardly.
But then Suzanne Wright helped to guide you to the answers that made a difference. She inspired hope that got you going. This is in sharp contrast (it seems) to what many of us in the autism community think of AS. They tend to be the fly in the ointment for any real conversation on what treatments and therapies are working with our kids. Glad to know that at least behind the scenes things may be a bit different.
So congratulations to you and Diezel. I know that you will never take this gift of your son’s health for granted. I also know you will dust off the criticism and forge a path of hope for others. Beyond that, I know you will look at your son with pride as he continues to amaze you and others.
Oh, and that time you have to ground him for being a “stupid teenager” I know you will celebrate, and we’ll be celebrating along with you.
Cheers, warrior mother.