Autism Speaks' Post-Diagnosis "Toolkit"......

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.....for families' reference in "the first 100 days" following a child's diagnosis of Asperger's or High-functioning Autism:

http://www.autismspeaks.org/docs/family ... ol_Kit.pdf

I think this is one of the more comprehensive write-ups of AS-HFA I've seen, and gives parents a pretty good description of what to expect.....but I hate the idea of a 'toolkit for the first 100 days' -- makes it sound like such a tragedy. Do they realize we can hear them?

As far as Autism Speaks is concerned, Autism IS a tragedy and their media material has literally SAID SO, in just those words many times over. They have painted us, over and over again, as useless ret*ds and "BURDENS" to our families.

They have to perpetrate the conception of Autism as a Horrible Ghastly Misfortune to Everyone it Touches, to frighten people into donating money.

Actually, I think it's a great idea. A parent who's child has just been diagnosed with any condition or disorder would want to learn more about the condition and treatment options for different symptoms, possible accommodations and supports available to their child ect. A toolkit doesn't imply tragedy, IMO.

I agree, the toolkit idea has some merit. But no, they don't realize we can hear them.

The philosophy is well embodied by a mom I know slightly who told me her 10 year old daughter is autistic after the child had ignored me saying hello. This is a little girl who I learned has had years of school and private services. Her mother told me her daughter does not know nor need to know she is autistic. I was dumbstruck how she thinks her little girl, fully mainstreamed, has somehow heard not a single conversation about being autistic. Or how she thinks it's better her child guesses what all these services have been for. I want not to judge, this is her child, she knows her best, but I wonder, if the little girl really has somehow not overheard, anywhere, what story she tells herself about how or why she is different.

Anyway separate from the issue of not telling and leaving ones child ignorant and whether that is right, or wrong, separate from this mom's idea her child had no need to know, is the reality to her that her child could not hear or would not understand the words, all for a child that so far as I can tell is academically capable of 5th grade work. So no, I don't believe they realize we can hear them.

The idea of a post-diagnosis 'tool kit' or brochure is not bad, but the title seems to assume a period of mourning the loss.... Or maybe it just takes 100 days to read all the literature?

Well, four heads and five arms in my case, but yeah.

That's why half the time they refuse the believe that high functioning adults could be autistic, even when we tell them in response to us doing something autistic.
Realize we can hear them?
They don't even acknowledge our existence half the time.
It's all about how it affects them and what they want.

Here's yet another self-serving poor us lament from family of an autistic kid.
I hate this article because she makes it out as to what a tragedy it is for them and how hard it is for them, without even really focusing on the kid.
It's all about how it affects them.

I remember what it was to be an autistic child, prone to fits & meltdowns & half the time unable to adequately express what was driving me so crazy.
Kid's got it way worse than the family, but here's yet another lamenting family member making out how terrible it is for them.
Meh.

Some people see the wheelchair.

Others see the person in the wheelchair.

I know I like to be appreciated for who i am - and not resented for who I am not.

Autism Speaks compares feelings after autism diagnosis to grieving in their toolkit. Seriously? Autistic people are alive, and autism is part of who they are, too.

Autism Speaks makes me want to puke. But, I guess they are a pretty fair exemplar of everything that it wrong with society. And, if we are going to help our society deal with its tragic condition, we have to meet it where it is.

In that vein...

Pretend, for a minute, that you're the NT parent of a young-ish child (no more than 7 or 8 or so, and probably younger). Your kid has been doing things that are "strange," but just a little bit strange, for years now. Friends and relatives have been making nasty comments about your child, your parenting skills, your lifestyle, and your spouse; it has worn away at your self-esteem, bit by bit, a little at a time, until there's not a whole lot left.

You love your kid. But you're worried-- you've had cause to see, over the past few years, how important fitting in and meeting expectations really is (funny, you really hadn't thought about it before, but it hurts when Grandpa demands your daughter leave the table during holiday meals, when the cousins' idea of playing with your son is to find creative ways to hurt him). You're worried, but at the same time, the pediatrician says everything's fine. The child walks, and talks, and will interact with you. Plays normally (well, more or less). You're worried, but at the same time, you would really like a professional assessment that you can wave at Grandma and Grandpa and Aunt Sue and the teachers at school and say, "S/he is fine! Everyone is different! Leave my child alone! Let her be! Let him grow! Love him as much as I do!"

So off you go. And instead of getting the stamp of acceptability you hoped for, you get THIS. Something is wrong, and they're going to tell you how serious it is, and unless you are very lucky it's mostly about limitations and "will never." What are you thinking?? "Oh, God, they were RIGHT. S/he's a FREAK." Even worse, you don't know JACK. Remember-- you didn't grow up with this yourself. Your mother, father, grandparents didn't grow up with this or learn to cope with it-- there was no Mommy or Daddy or Papaw or Aunt Jill to say, "He's like me, that's all. He'll figure it out."

Maybe your husband/wife talked about an aunt that s/he really didn't know very well, that nobody really kept in touch with, and there are horror stories about what a short-tempered, domineering, rigid, unforgiving man great-grandpa was. Maybe you suddenly remember that freaky kid that you'd forgotten all about teasing mercilessly in sixth grade. Maybe you have a flash-memory of Weird Girl, that kid in high school who carried a huge backpack and never spoke unless it was in a classroom debate. Little lights are going on in your head, but that's about all...

Oh, no, it isn't. Wasn't that what was wrong with that kid that shot all those kids?? Didn't you see an news story on this?? Oh, God. Oh. My. God.

Now the little lights are turning into panic lights. And you really need someone to take you by the hand and help you slow your breathing down (not to mention your mind). You could really use to hear that there are SANE things you can do that will not have to dominate and destroy your family's life (not to mention that of your child)...

...and instead, the best you have is Autism Speaks.

Wow. Talk about a rough ride. Can you see a reason for grief, fear, and anger that has nothing, really, to do with the actual autistic child?? Somebody in that place isn't even seeing the swaying, monologing, noisy, clumsy, clueless, wonderful, smart, sweet, obedient, interesting, insightful child in front of them.

From our point of view, yes, Autism Speaks is (still) having a massive Theory of Mind failure.

I have a theory about Theory of Mind. I don't think MOST people have a real strong theory of the minds of people who don't think and act and et cetera as they do. I don't think people, in general, are real good at understanding people who aren't like them. LOOK. Look around. Look at the news, look on the street, look in churches, look at the political climate and the culture wars here in the USA. LOOK. See what I mean??

From the point of view of a parent with a kid they don't (quite) understand?? I think they've got a pretty good STARTING POINT there. I only skimmed the article, but the only thing I can find to actively object to is their clinging to ABA-- behaviorism has its place, but it's limited, and I AM NOT ONE OF SKINNER'S RATS.

It's a good STARTING POINT.

The problem is that, on the 101st day (and the 1001st day), that's still where Autism Speaks is at, and still where the school system is at, and still where society is at (not to mention, you know, about 1 million autistic kids and their parents in America alone).

So let's see what we can do about that. Can we recommend (or write-- come on, I have an English degree and there are writers here who make me look like a sixth grader diagramming sentences) a better one?? How about a guide to The Next 265 Days?? Or A Companion for the 5,000 Days To Follow??

BuyerBeware - you make an excellent point.

Maybe we should form an "International Association of Autistic Persons" or something - a group by us, for us and that communicates our needs to legislators, as well as provide support to parents of autistic children.

It's a tall order but perhaps the time has come for us to have a voice to the world. We won't all agree on everything but I do think there are commonalities we can agree to and communicate outwards to others.

Thoughts and comments anyone?

a great idea, i will be happy to help

I swear if I hear one more thing about Autism Speaks I am going to scream until my vocal cords snap. All people with Asperger's are supposedly mute anyway, so at least I'll fit that one "idea" they have about us. Although I'll still be able to go potty by myself and know my alphabet. It makes me so angry, but what can I do about it?