It seems like this day has been taken over by a large
fundraising, research organization. All
of the fundraising, Light It Up Blue initiative, advertising etc. makes it
seems like Autism Awareness Day should be called Autism Speaks Day.
Over the past year or so, I have been pulling away from the
whole Autism Speaks thing. I have
learned a lot by reading blogs of other autistics and supportive
advocates. I have always accepted my
autism but haven’t completely understood everything about how it affects
me. I still don’t understand it
all.
I do not want a cure for my autism. I would never have an amniocentesis to see if
my fetus had autism either (whenever that test is developed or hopefully it
won’t be!). Just as I never did when I
was pregnant with my child to check for Down Syndrome. If our child was born with a disability, so
be it.
It turns out that our child was born with a disability-autism, the same as me and my husband. When they were diagnosed, it was a relief to
know why they are the way they are. It’s not
a bad thing, it just is. Sometimes I
ask my child why they have done, said, or thought something, and they will say “because
I’m Micah”. My child does things the way they
do things just as I do things the way I do them. It’s not bad just different. There are times when they or I want to do
things the same way as other people but other times we do it our way whether
other people think it is right or not.
We have always encouraged our child to be themself.
Accepting our child as they are does not mean not helping them. They have had a lot of occupational therapy, mainly
to help with sensory integration. They
also have other therapies to teach them to how to ask for help or other things
but they were done in a fun way through play and not sitting still at a table
with their hands still. My child used to fall
off their chair regularly because they were so squirmy and couldn’t just sit. I think it was too much just to sit and eat
dinner. As they have gotten older they are
more settled and we allow them to read while they eat, so now they just sit and
don’t fall off the chair anymore.
Some people think it is rude to read at the table but that is what they
need.
The therapies we have done do not change who our child is
but help to give them the skills that they can use to get their needs met whether
those needs are written down or spoken. We have
written in their IEP that they are not to be forced to give eye contact. If they are comfortable with you, then they are
able look at you, depending on what else is happening. I am the same way.
Again, I wouldn’t take a cure for my autism but I do need
support in the areas I struggle with. The
problem is that those supports don’t really exist except for a few places where
you have to pay a lot of money, especially if you need long term support with different things. We are not rich. We get little bits of help every now and then
but we put most of our resources into our child so they can grow up to be as
independent and happy as they can be.
A very large autism organization gets loads of fundraising
dollars especially at this time of year but most of the money goes to research
on how to prevent and cure autism so there won’t be autistic “burdens”
anymore. If they really want to help
families, they could spend the funds on support for the autistic person in the
ways that the person needs it.
Many people are “aware” of autism. What is needed now is acceptance that
autistics exist and always will; that we need jobs, healthcare, respect, love,
happiness, and understanding.
