My husband and I often sit and have this conversation. At least the boys are healthy. And then we look at each other. Well, they
are aren’t they? We, as a community, are
discovering more and more that autism is caused, or at least
exacerbated/triggered by other physical issues, issues that need to be
addressed, so I guess in that way, no they are not healthy. But autism is not life threatening. And that is what we are focused on when we
have these conversations.
Something I feel compelled to share is just how well aware I
am of how much worse it could be. My job
reminds me of this daily. I am a
transplant coordinator for an insurance company- and yes I know this may sound
kind of hands off, but I assure you, it is not.
I work with Medicaid patients, many of whom are pediatric, even infants,
and I form strong bonds with their parents.
I work hard to make sure these little guys have what they need, authorization
to get to and from their appointments, to receive their lab work, their scans,
their transplants, their follow up care, their medications, equipment, you get
the idea. That is the technical
part. On the other side of that is the
part where the moms recognize my voice the minute they pick up the phone and
start talking, or crying, so fast that I can barely get a word in
edgewise. The part where the parents are
looking for, or begging really for reassurance that their little ones will be ok. Or in contrast, parents who are dealing with
the stress through anger and yell at me, telling me I have no idea what it is
like to have a child with challenges.
The blessing in all of this for me is that I am on the phone, not in
person. The phone gives me the distance
I need to do what I need to do; to
explain the difficult things sometimes- that they will need to wait, or move
their child to a different facility, or change medications. In the end, these children get what they
need- they are ill, there is an established treatment for their conditions and
once medical necessity is shown, the insurance pays for it. If it is an experimental treatment it can be
a bit more complex, but often the study will actually pay for it, and if not, the
insurance does at times cover it.
And I understand that these are life threatening
conditions. Ok, I get that. I go through the medical histories, the lab
values, the scans, all of it on a daily basis and make medical determinations
based on my clinical judgment. Here is
what irks me- this is not even an option for ANY of the medical treatments
available for my children for their autism.
How can this even begin to be appropriate? HOW?
I believe with all my heart and also with my brain (which,
not to brag, but it’s pretty good) that future generations will look back on
this period of history with shame. Well,
for many reasons, but particularly when it comes to the autism epidemic and the
lack of action taken to help those affected.
Treating autism as a purely
psychological condition is not going to just sweep it under the rug and make it
disappear. The numbers keep growing, and
it is not being addressed, not by a long shot.
Google autism definition
1.
au·tism/ˈôˌtizəm/
noun
1.
a mental
condition, present from early childhood, characterized by difficulty in
communicating and forming relationships with other people and in using
language and abstract concepts.
|
Now, I was happy to see at least habilitative services become
mandated in our state this year- ie OT, PT, speech, and supposedly ABA. HOWEVER, because ABA has not been covered by
insurance ever in the past guess what??
There is no licensure for ABA’s in our state. So even though in theory, ABA done by licensed
certified therapists is covered, there are no licensed therapists, therefore,
none of the kids can actually have it.
Clever, huh?
Currently, Board Certified
Behavior Analysts (BCBA) are not licensed in the state of Maryland (they are
certified nationally). However, a licensure Bill for BCBA’s was passed by
the Maryland General Assembly during the 2014 session. It is expected
that the state will begin issuing licenses to BCBA’s beginning in 2015.
see? Isn’t that nice
of them? Baby steps.
Anyway, let’s step even beyond that. Into the space where autism is being
acknowledged as a medical disorder. You know
the space where most autism parents live.
Only now are the mainstream treatments listed above being covered by
insurance, and let me assure you, that alone is still a battle- when we finally
got the boys’ insurance company to acknowledge that they needed to pay under
the heading of habilitative services we both almost cried- it took months. Even the oral medications that are mainstream
medications (used off label for studies) we have tried have been covered by the
studies we participated in- we had to pay for Jack’s medication out of pocket
when we continued it temporarily after the study ended. Other interventions that are being used in
autism- they are considered experimental for sure, but can’t that be said for
many oncology therapies? So to list a
few, mitochondrial cocktails, vitamin B-12 shots (well, we got these covered
with a nice small $70 copay), hyperbaric oxygen treatments, IVIG, chelation,
supplementation, special diets, glutathione, colostrum, you get the idea. And what about the homeopathic treatments I
have been using with the boys since April- we have seen MARKED improvement in
Nate, no question, but the costs are killing us. These are the “options” given to autism
parents. Other than of course symptom
control, such as anti-psychotics, antidepressants, anti-seizure medications,
etc. Those are covered by insurance. To me, it just seems like it would make more
sense to treat the problem at its source than to run around putting out fires
(symptoms) all over the place. But
parents are limited in what they can do by their finances. Parents are asked about their finances before
they are presented with treatment options.
There is no insurance coverage for any of it, so if you can’t pay, well,
you’re screwed.
So though it may be so that my children are “healthy” in so
much as they do not have a life threatening illness, they do both have a
condition that severely impacts their quality of life. It does affect their physical health. And unlike any other condition out there, medical
necessity is not something that can be proven as of yet, because a cause has
not been identified, and medical treatment has not been acknowledged as legitimate.
Once again I ask, how can we limit treatments for a disorder
when we cannot prove what is causing it?
How can we call a disorder “mental” when associated symptoms include GI
disturbances, immune dysfunction, eczema, food allergies, and seizures to name
just a few?
