Speaking Out Against Autism Speaks, Even if It Means No Ice

[hopecounts]

Jun 5, 2015 9:41:58 GMT -5 laurenpetro said:

this post has been on my mind since i read it yesterday. i'm having a lot of not so impressed feels on it, and it's not towards AS.

i'm rolling my eyes that AS is considered a eugenics society. preventing a (likely) genetic issue that is a known hinderence in dealing with every day issues in society isn't eugenics. and it's not offensive to the people with the (likely) genetic issue. why can't people say, "i love you but i'm also going to work to see that the struggles you face every day don't have to be faced by another person."? i was born with a genetic issue and would LOVE it if people worked to end it. that doesn't mean i think people wish i hadn't been born.

it's not and either/or situation.

And I agree I have no issue with AS on that side at all.
But there are significant issues on other fronts.
I also have issues with any organization that promotes itself as representing a group or helping it not having any prominent leaders that are of that group.
How can you expect to truly help a certain group of people if they are not represented in the leadership?
My daughter's ABA school has 2 ASD adult members on its board because to fully serve their kids it's important that their voice be a part of the team

[laurenpetro]

Jun 5, 2015 9:47:30 GMT -5 hopecounts said:

Jun 5, 2015 9:41:58 GMT -5 laurenpetro said:

this post has been on my mind since i read it yesterday. i'm having a lot of not so impressed feels on it, and it's not towards AS.

i'm rolling my eyes that AS is considered a eugenics society. preventing a (likely) genetic issue that is a known hinderence in dealing with every day issues in society isn't eugenics. and it's not offensive to the people with the (likely) genetic issue. why can't people say, "i love you but i'm also going to work to see that the struggles you face every day don't have to be faced by another person."? i was born with a genetic issue and would LOVE it if people worked to end it. that doesn't mean i think people wish i hadn't been born.

it's not and either/or situation.

And I agree I have no issue with AS on that side at all.
But there are significant issues on other fronts.
I also have issues with any organization that promotes itself as representing a group or helping it not having any prominent leaders that are of that group.
How can you expect to truly help a certain group of people if they are not represented in the leadership?
My daughter's ABA school has 2 ASD adult members on its board because to fully serve their kids it's important that their voice be a part of the team

that can't be the only issue with this because it's SO easily rectified. one member and that argument goes out the window.  i'm not saying that's an invalid issue per se, but there have to be larger issues at play for this to be a controversey.

[hopecounts]

It's an issue because they can't get one single adult with ASD to agree to be on the board that's how much adults with ASD have issues with them.
That says something ignoring the fact that adults with ASD feel so strongly is like men ignoring women who tell them cat calling is an issue.
I feel that as a parent of a kid on the spectrum I have a responsibility to consider the view points of adults like her until she is able to express her opinions on these issues.

[laurenpetro]

and FTR, i don't care if people don't support AS. i don't support SGK and people leg-hump the shit out of that charity.

i've just found some of the arguments in this post to be a little... off putting. like, "why would people possibly want a cure when my high functioning child is fine!" well, not every kid is high-functioning. my kid can't tell me how his day was or what made him happy. or sad. or angry. or know when he's in danger. some kids aren't even potty trained until they're 10.

seeing these things as OK because HFASD kids are ok is... well, i'm not impressed. and it's not just this board, or about the backlash about AS but this argument in general.

[hopecounts]

And again I have no issue whatever with finding a cure or better treatments I just have other issues and concerns.
Namely that AS does nothing in my state and we have one of the highest rates of ASD.
People need support and services and AS promotes itself as helping ASD families but isn't.

[kirra]

Jun 4, 2015 9:42:46 GMT -5 katfco said:

Jun 4, 2015 9:18:23 GMT -5 @helenabonhamcarter said:

It sounds like a similar debate to what goes on in the deaf community, if it's okay to make a deaf child hear instead of I guess teaching them to deal with being deaf.

Except that's what Autism Speaks is trying to do, teach children and adults to deal with being on the spectrum, by making treatments and therapies available to them.

Some autistic people make the argument that they don't need treatment or therapy, and that Autism Speaks continues the notion that there's something wrong with them that needs fixing. Instead, they want the message to be one of difference, rather than deficiency.  

It's not even just this.

There was a discussion about Autism Speaks on my Facebook yesterday, primarily involving people with autism (they were formerly classified as having aspergers, so high functioning).

They want to know why all the articles and publications are from people who care for or are advocates for autistic people. Paraphrased, but almost a direct quote: "Some people with autism can't speak. We can. Why aren't we given a voice?"

[kirra]

Jun 5, 2015 9:41:58 GMT -5 laurenpetro said:

this post has been on my mind since i read it yesterday. i'm having a lot of not so impressed feels on it, and it's not towards AS.

i'm rolling my eyes that AS is considered a eugenics society. preventing a (likely) genetic issue that is a known hinderence in dealing with every day issues in society isn't eugenics. and it's not offensive to the people with the (likely) genetic issue. why can't people say, "i love you but i'm also going to work to see that the struggles you face every day don't have to be faced by another person."? i was born with a genetic issue and would LOVE it if people worked to end it. that doesn't mean i think people wish i hadn't been born.

it's not and either/or situation.

Because over time the things wrong with you become part of your identity. It becomes emotional, not rational. It's not an either/or situation, but sometimes it feels like one.

As a child or adult with a genetic disorder, to hear your parent say they hope they can find a cure so no one ever has to live like this again makes you wonder about your worth.

People have very strong feelings about whether it would be ethical for me to have a biological child because of my genetic disorder (so do I, and my decision was no, but the conversations happen anyway). What they forget is that they're talking to someone with that genetic disorder.

I hope they find a cure for autism. But in the meantime, especially on the high functioning side, there are many adults who feel like this conversation is saying their parents wish they had been born a different person.

[KB]

I can appreciate the perspective that many adults with ASD feel like the conversation is saying their parents wish they has been born a different person. I'm not sure if that is the right way to word it. I don't wish my child had been born a different person, but I also don't think ASD is who he is. He is so much more than that. Unfortunately, a lot of people will never get to see that because of some of his challenges. I wish he didn't have to struggle so much. I wish things came more easily/naturally for him. I wish he didn't feel so out of control and melt down over basic things that will always be a part of functioning in life.

I also think adults with ASD who are able to have a seat at the table with an organization like AS are probably much more high functioning than a lot of adults with the diagnosis. Their challenges are very different than lower functioning adults who can't speak and need a higher level of care.

[tacom]

The lack of person-first language makes me wince. That is all.

[kirra]

Jun 6, 2015 7:40:56 GMT -5 tacom said:

The lack of person-first language makes me wince. That is all.

People first language is its own separate discussion, but it has its own controversies. I consider myself a disabled person, not a person with a disability.

An easy summary of my feelings on people first language is the National Federation of the Blind's publications regarding it.