Seems like
Jenny McCarthy put her foot in it at the last AutismOne conference. Apparently
she divided autism moms into Warrior or Victim categories. I didn’t see her
speech, but did see parts of it transcribed. She spoke of moms who are always
searching for new treatments for their autistic children—Warrior Moms, and
compared them to moms who follow the mainstream philosophy regarding autism
treatment. She labeled them “Victim Moms” who love the attention of having an
autistic child; clearly not a favorable comparison.
I’m going to
give Jenny McCarthy the benefit of the doubt because she has done a lot to
raise autism awareness, even if her choice of words was insensitive. I think
the point she was trying to make is there are a lot of treatments out there for
autism, but most doctors simply have no training to know what to look for and
how to go about treating autism. And many parents don’t realize their children can
get better, their conditions can improve, but they are told by medical doctors there
really are no treatments for autism.
I’ve been to
a few of these no-hope doctors myself…with little to no training in autism, they
assume these children bang their heads and assume odd postures simply because they
are autistic and that’s just what “they” do—not because there is an underlying
cause, often gastrointestinal pain that these children are pitifully trying to
cope with, and all too often can’t communicate.
For too long
children with autism have suffered needlessly because doctors simply
pooh-poohed their symptoms. When Ryan was suffering with diarrhea multiple
times a day that smelled worse than death and left his bottom red and covered
in rash, I was told he had “toddler diarrhea” and “poop stinks”—these so-called
medical opinions rendered by physicians. Even when I took him for an evaluation
at Kennedy Krieger Institute in Baltimore, I was told by the doctor there not
to try any of “those diets” or that “biomedical stuff” and if I spent one
dollar, “that dollar should go to ABA”. This was from a doctor who sees
autistic kids all the time, who told me he can’t believe the explosion in the
number of autistic kids, yet seems to think it’s just a series of neurological
coincidences without a medical basis.
ABA has
worked wonders for Ryan, but then so has treating the myriad of vitamin and
mineral deficiencies he has, his anemia, his acute allergies, his oxidative
stress and his immune system with that “biomedical stuff”. Stopping his
supplements turns this happy, smiling little boy into a miserable and cranky
child who has tantrums and zones out. One of “those diets” has all but cured
his diarrhea. Incidentally, when I found a doctor in Maryland who knew how to
treat autism, he put Ryan through a battery of tests that revealed all sorts of
deficiencies that no doctor had previously thought to check. The doctor at
Kennedy Krieger (having been sent a courtesy copy of the results) called and
expressed some surprise that Ryan had a lot of issues that needed to be
treated. I’ll bet he still does not run these tests on the children under his
care, even though Ryan’s problems are common in autistic kids.
I don’t know
if there’s a cure, per se for autism, but I have seen children who have
recovered enough to lose their diagnosis and go on to lead productive lives. For
some reason making a statement like this is controversial; I assume because for
years doctors have said nothing can be done for autism. I can’t blame the
average parent who accepts that. Our society has been taught to revere physicians
and generally not to question them.
I hope more
parents with autistic children—and above all, doctors, will keep an open mind
about treatment. Actually, I hope more doctors will make the effort to attend
an autism conference to learn what the latest research says and what is working.
I can promise them they will treat an autistic person at some point in their
career. But I digress…I see people who think following a gluten and casein free
diet, or using supplements is quackery, or believe because something didn’t
work for their child, it is the equivalent of snake oil. Every child with
autism is different and might have different metabolic pathways affected. What
works for one child may have no effect on another.
I know I
will never stop looking for ways to help Ryan and children like him. Jenny
might have a point, but I don’t think it’s as black and white as warrior-victim,
and I think we in the autism community, or those looking in, should be less
judgmental and respect one another’s choices. We all love our kids and do what
we think is best for them.
Warrior or
victim? I prefer to think those of us who have autistic children are all
warriors, because each of us is fighting the good fight—however we choose to
approach it.
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