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MadFialka
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28 Jul 2016, 12:10 pm

Okay, so I'm not sure if this is the right forum to put this in, but I've run into an awkward situation involving my step-daughter and I'm not sure how to approach it.

First off, she is neurotypical. I am not. I strongly suspect I'm autistic, based on A LOT of research, and have just started taking the first steps toward getting diagnosed. But even if I'm not, I definitely have my share of 'autistic traits' for lack of a better term, and I know quite a bit about the topic. Enough to form a strong opinion on a certain advocacy group.

Anyway, I just found out that my step-daughter's sports team will be doing a demo at an autism walk in our community. Which would be great, since at some point I would like to be able to talk about this topic with her, when I feel we're ready to have that conversation. For now, she's eight, and while my boyfriend and I have taught her to be accepting and understanding of all sorts of people who she might perceive as 'different,' I'd like to wait until she's a bit older.

Problem is, this walk is by Autism Speaks, whose core message, leadership, etc. I wholeheartedly disagree with. Enough to feel very uncomfortable with her team's participation in it. So what do I do? Her team is a small one, where parents have a lot of input into what they do, so I could in theory express my reservations, but I don't want to have to tell these people I barely know where I'm coming from personally. Should I just not have my step-daughter participate? Am I making too much of this? Before I decide to even bring this up to my boyfriend, I'd be curious to hear your guys' thoughts.



ArielsSong
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28 Jul 2016, 1:52 pm

MadFialka wrote:
Okay, so I'm not sure if this is the right forum to put this in, but I've run into an awkward situation involving my step-daughter and I'm not sure how to approach it.

First off, she is neurotypical. I am not. I strongly suspect I'm autistic, based on A LOT of research, and have just started taking the first steps toward getting diagnosed. But even if I'm not, I definitely have my share of 'autistic traits' for lack of a better term, and I know quite a bit about the topic. Enough to form a strong opinion on a certain advocacy group.

Anyway, I just found out that my step-daughter's sports team will be doing a demo at an autism walk in our community. Which would be great, since at some point I would like to be able to talk about this topic with her, when I feel we're ready to have that conversation. For now, she's eight, and while my boyfriend and I have taught her to be accepting and understanding of all sorts of people who she might perceive as 'different,' I'd like to wait until she's a bit older.

Problem is, this walk is by Autism Speaks, whose core message, leadership, etc. I wholeheartedly disagree with. Enough to feel very uncomfortable with her team's participation in it. So what do I do? Her team is a small one, where parents have a lot of input into what they do, so I could in theory express my reservations, but I don't want to have to tell these people I barely know where I'm coming from personally. Should I just not have my step-daughter participate? Am I making too much of this? Before I decide to even bring this up to my boyfriend, I'd be curious to hear your guys' thoughts.


I think if this were my daughter (she's too young, as yet) I would perhaps ask her what she knows about Autism Speaks. If she's doing this event, it is useful to educate her on what she is choosing to get involved in. I would suggest the same for any similar thing, autism related or not.

I think I would sit my daughter down at a computer, open up the Autism Speaks website and go through it with her, asking questions about how she feels about certain things, for example:

"This bit of the website says that they want to cure autism. How do you feel about that?"

"It says here that a young child should receive early intervention, ideally with a minimum of 25 hours of structured therapy each week. Do you think that a young child needs that?"

I would try to be relatively unbiased, but if she doesn't seem to understand the issues (and she probably won't - at 8, with little experience of the alternative viewpoints, she is likely just to trust Autism Speaks as the knowing authority), then perhaps type 'autism speaks bad' into Google, vet a few articles/forum posts and show her why some people don't agree with them. Then, ask her again what her opinion is. If she feels that she agrees with Autism Speaks, be proud that she's made an educated decision with your support, even if it isn't one that you agree with. Either way, it is an important step towards her realisation that even organisations that are considered to be 'authorities' can have their flaws!



MadFialka
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28 Jul 2016, 9:08 pm

Thank you for your reply ArielsSong. I actually did google 'Autism Speaks bad' and came up with some good recent articles on the controversies (including one by a father in a situation similar to mine). I've discussed this with my boyfriend (my step-daughter's father - though we're not married, we've raised her together these past five years) and we agreed that I should send the parents organizing this a polite e-mail voicing my concerns, with some links to said articles, and let them decide what to do. Because while I don't want to create conflict or make a big deal out of this (and sending this e-mail is, frankly, rather scary), I cannot in good conscience stay quiet either.



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28 Jul 2016, 9:12 pm

MadFialka wrote:
Okay, so I'm not sure if this is the right forum to put this in, but I've run into an awkward situation involving my step-daughter and I'm not sure how to approach it.

First off, she is neurotypical. I am not. I strongly suspect I'm autistic, based on A LOT of research, and have just started taking the first steps toward getting diagnosed. But even if I'm not, I definitely have my share of 'autistic traits' for lack of a better term, and I know quite a bit about the topic. Enough to form a strong opinion on a certain advocacy group.

Anyway, I just found out that my step-daughter's sports team will be doing a demo at an autism walk in our community. Which would be great, since at some point I would like to be able to talk about this topic with her, when I feel we're ready to have that conversation. For now, she's eight, and while my boyfriend and I have taught her to be accepting and understanding of all sorts of people who she might perceive as 'different,' I'd like to wait until she's a bit older.

Problem is, this walk is by Autism Speaks, whose core message, leadership, etc. I wholeheartedly disagree with. Enough to feel very uncomfortable with her team's participation in it. So what do I do? Her team is a small one, where parents have a lot of input into what they do, so I could in theory express my reservations, but I don't want to have to tell these people I barely know where I'm coming from personally. Should I just not have my step-daughter participate? Am I making too much of this? Before I decide to even bring this up to my boyfriend, I'd be curious to hear your guys' thoughts.


She's 8 and this isn't about anything political for her. This is about her demo'ing her sporting abilities, and she's probably looking forward to it. I would keep quiet on this matter and let her enjoy her day.



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28 Jul 2016, 11:08 pm

Let your daughter participate.
It's a team activity, and it would be weird to pull her out and away from her team just because you disagree with Autism Speaks and she is too young to deal with these issues herself.


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MadFialka
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29 Jul 2016, 6:19 pm

Yeah, if the team does decide to participate in this I'm not going to force her not to go. You guys are right, she shouldn't miss out just because of a difference of opinion on my part. It would be different if this were, say... a religious organization that discriminated against LGBT people or something. There would be a definite 'no' and a strongly-worded letter involved then!

However, I can use this as an opportunity to educate. Yes, my step-daughter is only 8, but she's a smart girl, and we've tried to be as honest with her as we can about our reasons for doing things, especially when she's directly involved. Knowing her, she'll probably want to walk or donate money or something too. And I want to nurture that generosity, but I'll need to explain why I'd rather take that dollar out of her piggy bank to the Easter Seals office instead :)

I also feel making my opinion known is important, especially where the team is so small and very much open to parental input. I'm still trying to figure out how to word my e-mail, but I plan to make it very clear I'm not demanding they not do this event, just voicing a concern and passing on info they might not be aware of.