I’m listening

My 10 year old son was diagnosed last fall with PDD-NOS.  I’m very new to this, I have no experience with autism other than what’s in the mainstream media.

I remember learning of autism as a kid and feeling fascinated by it.  I read about “classic” autism (non-verbal, rocking, spinning things) but that was about as far as I got, I was 10-ish.  There was probably an after-school special on it.  I didn’t know anyone who carried the label “autistic.”

Now I love someone who has received this diagnosis and I’d like to understand more fully.  I’ve learned all about the diagnosis and all the labels.  (Which, just as soon as I learn them, they’re all changing and going away in the new DSM-V.)    I’ve learned about neurodiversity, too.  I’ve learned that autism is individual, no one is exactly like my son.  I’d ideally like to help my son progress and have a happy, fulfilling life.  For now I’ll settle for learning.

My son is different than me and sometimes it hurts.  His frustration and pain, frustrates me and causes me my own self-inflicted pain.

I’ve been on a path that taught me not to fully trust the media.  I’ve watched TV and movies all my life, and I’ve come to believe most of it’s BS.  I’ve learned not to go with the business that pays a lot for advertising because they charge me more.  I’ve learned to look at charities who want my money and find out how they use it and give only to those that seem to actually spend it on the people who need help.

When I started researching autism, of course I came across Autism Speaks.    I noted all the high profile events, big fundraising, and that they’re trendy.  I noticed quickly how many things were being marketed to me, the parent of an autistic child.  Soon after I collected information from them, I found a video on indiegogo project called Citizen Autistic.    They point out that the percentage of money raised by Autism Speaks that actually supports autistic people is small, and that there are no autistic people on the board.  I wasn’t surprised to find that there are people who are labelled autistic who don’t feel that Autism Speaks, speaks for them.  (And surely they are the Voldemort of which gareeth writes.  I just found gareeth’s blog today and this post really rang true.)

I got on facebook to connect with other parents and learn more.  Everywhere I look, there’s people who want me to post a ribbon, puzzle pieces, and the color blue.  They want me to buy scarves, and jewelry, some of it blue, some of it with puzzle pieces on it.  It’s trendy to get a puzzle tattoo.  Pbbbththth.  Not happening, sorry it’s not meaningful to me, I feel like I’m being treated like a fresh income stream.

I do not choose to rule my life or my son’s life by one diagnosis.  I feel blessed that he is so high-functioning and he is making progress.  I want to learn how to help him continue to progress so that he can live the life he chooses.  In the meantime, want to reduce my own frustrations and learn how to parent my son.  I’m listening to him and I’m seeking information from people who are living it.  I am also finding other support organizations.

Thank you gareeth, for your post.  I am looking for knowledge from people who live with autism.  I am an outsider, because I don’t have autism, yet I know more about it than many, and I am listening.  I hadn’t heard about the Six Degrees Project.  I agree with you, I don’t fully get the premise.  If it fosters empathy, it could be a good thing, but not speaking for two hours doesn’t simulate autism very accurately in my world.  My son seems to have language failings, but he does speak.  I’m thinking that from my experience of living with my son, to somewhat experience what he goes through, you’d need a few hours of living in a world with people who speak words at you in a foreign language, invent rules that make no sense, that continually prod you to do things you don’t really want to do.

Hmmm…maybe to understand autism they need to spend some time going through customs, with no translator, while in possession of a suitcase full of improbable items they have to explain?  I suppose that would end up taking more than two hours.  Maybe just put them on a crowded train with a bucket on their head?  Not exactly right, but it makes more sense to me than being quiet for two hours.

bucket

If I choose to be quiet during the same time as the Six Degrees thing, it will be because I am meditating.  If I choose to wear blue, it’s because I like blue and that’s what was clean.  I’m not very trendy, and while I do like puzzles, it’s not enough to wear puzzle pieces on my person.

(I have a running, ever-unpublished, list of undiagnosed adults who could benefit from social skills training.  Special Ed for All!  That’s kind of wrong of me, but gosh, wouldn’t it be helpful?)

These are gareeth’s words below except for the ones in parenthesis.  Chunked for my own understanding because I glossed over it a couple of times, and it’s too important to gloss over.

“the very reason we

are objecting is

precisely because

some cannot object 

(and that)

is lost

on those who feel the need

to remind us of this.”

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