Autism awareness month is over. And I really haven’t had much to say this
year. There is a reason for that. The reason is that I am burnt out, and
frankly disgusted with much of the autism community. I have had nothing nice to say about autism
awareness this year, so I chose to say nothing.
It’s funny to watch my progression through autism awareness month- the
first year after Nate was diagnosed I took him to the Roar For Autism done by
Kennedy Krieger and gathered as much information about traditional treatments
as I could find. The next year, John and
I attended the TACA conference, and gathered as much information about cutting
edge, non-traditional therapies as we could find. And this year? We went to Autism Awareness Day at Sesame
Place. And that’s about it in a
nutshell. My own thought processes do
not fit into either Kennedy Krieger’s idea of autism therapies or TACA’s ideas
of autism treatment. I am blazing my own
trail, like so many other autism parents.
And once again why is this?
Because no one can really help us.
No one can really tell us what has caused our children’s autism, or how
we can assist them most effectively.
That doesn’t stop people from trying, or judging. I am sick of it. I wrote about my disgust with the general
population’s lack of autism awareness earlier in April, and received so many
responses from other parents who felt just the same way. And yet, here is the most shameful part. In many circles, the people who are really attacking
each other are autism parents who do not agree with one and
other. Or, on the other side, autistic
adults who do not agree with parents “treating” their autistic children at
all. And you know what?? I call bullshit to each and every person who
has criticized a fellow autism parent.
We all feel very strongly about our beliefs- of what is causing autism,
whether it can be treated, whether it should be treated. But unfortunately at this point in history our
opinions are just that- beliefs. There
is not one definitive answer out there.
See, here’s the thing, I disagree with many people’s beliefs
about autism. I choose not to "go after" them or criticize them for their ideas- although today I will mention them to make my point. For instance, those who say it is a solely
genetic “condition”, one that makes an individuals’ brain different and not
less, and that this should just be accepted.
I ask you this? Why have the
statistics progressed in this manner?
How much of a jump is that? And do you REALLY think that this much of an
increase is due to increased awareness?
I mean really? Because I can
promise you that if my boys had the same issues and behaviors and were born 15
years ago, I would have known to have them assessed and get them help. I found out what aspergers was when I googled Jack's symptoms because I was worried. So once again, I think that theory is a bunch
of crap. I will say it one more time-
there is NO SUCH THING as a genetic epidemic. Genes take hundreds and hundreds of years to
change. There is no
way, if this is solely genetic that we should be seeing this degree of an
increase. Right? So guess what?? To those who think this is genetic (only), a
difference in a person, and that it does not warrant any treatment, but only
therapies, I disagree with you, sorry but I do.
And that is how I do feel, that both genes and environment
are at play. And I feel very strongly
about this. However, I do not shove
these beliefs down anyone’s throats. If
you have children with autism sitting next to mine eating a big cheeseburger on
a big gluteny bun and washing it down with a big glass of milk (packed with
hormones) I don’t lean over and say you are a bad parent and what you are doing
to your child is inexcusable. I keep my
mouth shut. Because it is my BELIEF that
nutrition has a huge impact on many kids with autism. BELIEF.
And it is your belief clearly that it does not. We both have so called studies we could
reference, so let’s not waste our breath.
We don’t have a true answer yet.
Although, of course I think I’m right, ha.
The same goes with supplementation, and other treatments- I
don’t tell you that ABA/speech/OT/special education are not enough because
there are clearly other physiological problems that need to be addressed as
well. That new studies are coming out on
these issues daily and that I feel very strongly that you might look back one
day and regret not trying these other interventions. Nope- I run around my house like a madwoman
every day getting the boys’ supplements together while making them a GFCFSF
breakfast, and intermittently saying, here swallow this, and here, drink this,
and praying that I am helping the boys in the long run. I don’t tell you “shame on you” for NOT
doing this, so why oh why are there autism parents and autistic individuals out
there shaming parents who are trying these methods, telling them that they
should accept their children the way they are and that we are insulting them by
“treating” them.
I hear stories of kids who have shown tremendous progress
with these interventions daily telling their moms (now that they can) “thanks
for never giving up”. This means
something to me.
So I am pissed off.
Really mad that the autism community has become what it is. I don’t just blame us parents, I blame the
huge amount of conflicting information that we are all handed and asked to
interpret. We all have to draw our own
conclusions because no one else has been able to figure it out. And we all do this differently. And that’s not our fault- we are all
individuals. And this is a scary damned
thing to have to face, every single day, when no one can really tell you what
the right thing is. What I can blame on
us parents is the JUDGEMENT. We all know
what it feels like to be judged to be “bad parents” when our kids misbehave, or
have meltdowns, hit themselves, cover their ears and yell, or try to run away
from us. And we know these are behaviors
associated with autism and NOT our parenting skills. Can we maybe agree to disagree about autism
causes and treatments for now, and band together and build each other up rather
than tearing each other down? Maybe stop
calling autism treatments that are not, as you say “proven”, quackery and
persecuting parents who are truly trying
to help their children? It’s my
understanding that in order for a treatment to be ruled out, or considered
quackery, one needs to know the cause of the disorder first. Maybe that’s just me. We are all doing our best, and we all deserve
respect for this. How can we expect
others to become “autism aware”, to have respect for what we all go through,
when we can’t even do that for each other?
