Repost from 2012. My thoughts and perspectives have not changed.
Next weekend begins autism awareness month. Just letting everyone know
that I am not doing anything different than I normally do. I am not
going on marches, walks or to rallies. I am not wearing blue. I am not
putting a puzzle piece on my car. And no, this is not because of the
on-going feud between ASAN and Autism Speaks. This is because everyday in this house
is autism awareness day, week, month and year. We do not need to change
anything we do in this house to "celebrate" autism awareness month. We
are autism awareness.
They walk out into the world and the boys are dealing with autism and
society. They walk into a store and the boys are dealing with autism and
sensory stimuli. They walk onto campus and they are dealing with autism
and auditory processing in classrooms. They walk onto campus and they
are dealing with abstract reasoning issues and language processing. They
walk into a restaurant and they are dealing with autism and the sights,
sounds and smells of a new environment. They walk onto an airplane and
the boys are dealing with autism and a fear of flying, change of
schedule and an unknown adventure. They do their chores and they are
dealing with autism and distractions and organization.
Everyday the boys encounter people and places and incidents that have an
effect on their lives. When people interact with them these people
learn about autism. When society sees them, society learns about autism.
When professors contact the disability office to understand autism
better, these people learn about autism. When doctors ask questions when
they deal with the boys, these medical professionals learn about
autism. When they walk onto campus and interact with their fellow
students and these young
people see how intelligent, genial and kind they are, more
than anything else, these social interactions have a bearing on the
future and how autistics are perceived by society.
Does prejudice still exist? Absolutely. That is what happened at CM1's
job from last semester. (This was an incident in the fall of 2011. Since then CM1 and CM2 have had internships at which they are very welcome and very successful.) Yes a complaint was made. They told me that it
was taken care of...I did not request that he be reinstated at his job.
I am absolutely NOT sending him back into a situation where he could be
bullied, picked on or made to feel inadequate. That would not be autism
awareness that would be making my child a target and he has had enough
of that in his life. If others want to live their lives like that then
so be it. Go ahead. But that is not going to happen with my children.
Sue the school you say? You want me to sue the school that allows them
every accommodation known to law and man. The school that allows them
leeway in behavior at times because they understand autism and how hard
it can be to process issues. The school that works with us and their
doctors and their para and their entire village so that the boys may be
able to access their brilliant minds. That school? Well no I will not
sue under any circumstances that open, welcoming and highly
understanding college for the misdeeds of one ignorant man. Sometimes in
life you need to know when to hold, fold and call too. You really do
need to know who your friends really are and how to say thank-you as
well. That too is autism awareness, not to be perceived as ungrateful
and self-centered louts.
By the way, sorry to all those who are mad at Autism Speaks and all
support Autism Speaks, but I have issues in my life and who did what to
whom and who dissed whom and whom represents whom is not one of them.
Perhaps it is as we discussed in my last post, youthful passion that has
dwindled. (here) I do not know. What I do know is that I don't like gimmicks. I
don't like nonsense. I don't like disrespect. I don't like that some
people treat my children as if they are specimens in a zoo. So fight
amongst yourselves all you want. I don't care anymore. If this means you
won't come back here too, then so be it. If it means you unfriend me on
Facebook or unfollow me on twitter, then so be it. I have real fights
to fight and real day to day problems to solve.
What I care about is that my boys are entitled to be seen on a daily
basis as human beings with rights and freedoms as everyone else year
round. That is what I am fighting for. Yes I know that is what the
advocates are fight for too, but they are not here with me in my house,
in the boys' school, at the supermarket, at the restaurant, at the
airplane or the hotel. I and hubby alone fight this fight for the boys.
We always have stood alone. No one has ever held our hands. My demand is
that these advocates remember that their view is not the only one and
that others do and have a right to disagree with them. So fight amongst
yourselves, just make sure in carrying on, you don't fuck it up for
You know, we fight everyday. Not for just a day, a week or a month, so
everyone in the world can feel good about themselves. Pat themselves on
the back. Talk about how society should support those with autism. How
society needs to find better educational tools for those with autism.
How society has to find better supports for children as well as adults,
most definitely for adults with autism.Nope. I am not going to allow
society to pretend how great they are because they heard a lecture about
autism, talked about issues for an hour or two, or gave $5 for an
autism walk or thought about how they might have known, possibly have
seen, most decidedly came across someone with autism. This lets society
off the hook too easy. Well I won't.
So society can make itself feel good about all that it does for the
month of April. We will be seeing society the rest of the year too,
every month, every week, every day, every hour. We are still here after
April. Whether society likes it or not. And its how society treats my
boys during those 11 months that really count. Concern doesn't count
when society can give itself a public medal for how great they are
because of what they did in April. It only counts when they care in
August and January when noone is looking and its not considered the
"cool" issue of the moment
Honestly, we cannot control every aspect of life and every aspect of
society. All we can control is the little space that we inhabit on this
world. So no, I am not doing anything different than I already do for
autism awareness month. I am not going to ask the boys to do it either.
They live their lives on their own terms, and that in and of itself
provides society with knowledge and autism awareness. The boys' lives are autism awareness without them even
thinking about it. Their lives are autism awareness because they exist
and they are part and parcel of the world.