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Post by Danielle on Apr 2, 2018 21:53:19 GMT
Hey friends, I'm sure you've seen the "Light It Up Blue" and Autism Speaks posts today as it is Autism Awareness Day/Month. I want to take a moment of your time to ask you to reconsider supporting these campaigns with a little insight from the autistic community. Why are so many autistic people against Autism Speaks? Well, they are harmful to autistic people. They don't let us speak or value our experiences and input, in fact, they actively exclude us. They have been known to cash in on fear mongering and push it as a "terrifying disease" that dooms families. They treat us like a burden and a tragedy. They have recommended dangerous and traumatic treatments (bleach enemas, chelation and ABA which is akin to gay conversion therapy and has high rates of PTSD). They have given a voice to the anti-vaccination movement. They have next to no input from autistic people and an ex-staff member who left was treated appallingly. Oh, and why is it 'Light It Up Blue?'. Autism was once thought to be a male condition (or more specifically, boys, as adults get very little representation). Newsflash: It's not, and evidence is pouring in to suggest women have been underdiagnosed due to presenting differently. Autistic people want to be accepted, included and respected. We don't want to be 'cured' or erased. So, how about we go #RedInstead? Or #LightItUpGold? There are plenty of alternative ways to show your support. Please read the 'ActuallyAutistic' hashtag on Twitter to hear our side of the story. Thank you. We appreciate it. I'm happy to answer questions if anyone has any. I've tried to keep this relatively short and sweet so as not to bore you.  |
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Post by Dani on Apr 3, 2018 4:26:28 GMT
Now I feel kind of stupid. Pardon me for this but I thought it was the same disability, expressed differently. Like having autism makes you autistic? Uhh. I don’t Google disabilities but maybe in this case I should just to not make a fool out of myself more.  |
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Post by Danielle on Apr 3, 2018 12:07:56 GMT
You're far from stupid, Dani! I want people to ask questions. There's no reason most people would know these things unless they were involved in some way.
You are right. Autistic people are diagnosed with an Autism Spectrum Condition/Disorder. The Aspergers diagnosis is included in this, but that was recently removed to fit under the umbrella of Autism in the latest DSM-5 (Diagnostic manual). Many parents and professionals try to push 'person-first' language (has Autism) but an overwhelming majority of us prefer 'identity-first' language (is Autistic). Ultimately, it's best to use what the individual person prefers, but it can be frustrating being told by allistic people (non-autistic) what you should use when it is an integral part of your being that can't be removed. Hope that helped in some way!
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valerio23
Full Member
Sticks and stones, they may break these bones But then I'll be ready, are you ready?
Posts: 249
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Post by valerio23 on Apr 3, 2018 14:16:13 GMT
Hey friends, I'm sure you've seen the "Light It Up Blue" and Autism Speaks posts today as it is Autism Awareness Day/Month. I want to take a moment of your time to ask you to reconsider supporting these campaigns with a little insight from the autistic community. Why are so many autistic people against Autism Speaks? Well, they are harmful to autistic people. They don't let us speak or value our experiences and input, in fact, they actively exclude us. They have been known to cash in on fear mongering and push it as a "terrifying disease" that dooms families. They treat us like a burden and a tragedy. They have recommended dangerous and traumatic treatments (bleach enemas, chelation and ABA which is akin to gay conversion therapy and has high rates of PTSD). They have given a voice to the anti-vaccination movement. They have next to no input from autistic people and an ex-staff member who left was treated appallingly. Oh, and why is it 'Light It Up Blue?'. Autism was once thought to be a male condition (or more specifically, boys, as adults get very little representation). Newsflash: It's not, and evidence is pouring in to suggest women have been underdiagnosed due to presenting differently. Autistic people want to be accepted, included and respected. We don't want to be 'cured' or erased. So, how about we go #RedInstead? Or #LightItUpGold? There are plenty of alternative ways to show your support. Please read the 'ActuallyAutistic' hashtag on Twitter to hear our side of the story. Thank you. We appreciate it. I'm happy to answer questions if anyone has any. I've tried to keep this relatively short and sweet so as not to bore you. I knew a little boy, he was 11 when we met. We became best friend and he was autistic, so, I talked with his mom about him, trying to understand the situation in which he lived and I learned how to know his world and how to talk to him. Now, he is 16 and is a little regional champion of Rubik cube. From this, I've learned one thing in absolutely: we should just listen to the people that seem like different and learn from them, we should know more, see more and don't be scared to know the things. Three years ago, I started to learn about Asperger's syndrome with an Italian series that now sound like stupid but thanks to that I've started to support those peoples, and I think that they are incredibly amazing. So I'm with you 💪 |
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Post by Dani on Apr 3, 2018 16:52:44 GMT
You're far from stupid, Dani! I want people to ask questions. There's no reason most people would know these things unless they were involved in some way. You are right. Autistic people are diagnosed with an Autism Spectrum Condition/Disorder. The Aspergers diagnosis is included in this, but that was recently removed to fit under the umbrella of Autism in the latest DSM-5 (Diagnostic manual). Many parents and professionals try to push 'person-first' language (has Autism) but an overwhelming majority of us prefer 'identity-first' language (is Autistic). Ultimately, it's best to use what the individual person prefers, but it can be frustrating being told by allistic people (non-autistic) what you should use when it is an integral part of your being that can't be removed. Hope that helped in some way! Thanks for explaining this, so it was as I thought. Jeff also explained to me what you meant. I think it was too early for me to read (6am). But what would you suggest we all should do? Ignore them or what? Or are you just making us aware?  |
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Post by Danielle on Apr 3, 2018 18:22:23 GMT
I'd love people to boycott the 'Light It Up Blue'/Autism Speaks campaigns and/or support an alternative one (#RedInstead or #LightItUpGold). We are making progress slowly and if one person reads this and thinks "Oh, I didn't realise" and reconsiders, then that is a huge win.
I'll come back to post some links later in case anyone else is interested in learning more. I appreciate everyone who has taken the time to read this. Need to finish some work now. <3
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Post by Dani on Apr 3, 2018 18:27:45 GMT
I'd love people to boycott the 'Light It Up Blue'/Autism Speaks campaigns and/or support an alternative one (#RedInstead or #LightItUpGold). We are making progress slowly and if one person reads this and thinks "Oh, I didn't realise" and reconsiders, then that is a huge win. I'll come back to post some links later in case anyone else is interested in learning more. I appreciate everyone who has taken the time to read this. Need to finish some work now. <3 I unretweeted my retweet when I read this because I'm not sure I'm 110% following. I was thinking that a lot of people don't even know what it means, they just might have heard the word. So any awareness is good. Still not convinced I agree with you fully, so come back and tell me more |
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Post by Danielle on Apr 4, 2018 0:50:32 GMT
Thank you for doing that. <3 I don't expect everyone to agree, of course, but even being able to have this dialogue is brilliant. I still love you. ;-)
People are well-meaning when sharing these posts and are unaware of the connotations it has or its origins. It seems like a helpful thing to do. I get that, but when we know the harm this organisation has done (and continues to do), it becomes impossible for us to ignore.
Every year we see this campaign that originates from AS and how they continue to push hateful narratives and stereotypes while doing very little of what they claim to do: help autistic people and their families (and they make absurd amounts of cash with their exploitative methods and fear inciting marketing techniques). It all stems back to them cashing in on this, and that makes me so uncomfortable.
The blue/boy's only stereotype has prevented women, girls and trans people from being diagnosed and receiving the support they need. It's not at all representative of the spectrum. "Nothing about us without us" is a great quote, and it's about time self-advocates were involved, to show solidarity.
Most people are aware of autism by now. Awareness is excellent, but the problem is when that is where it ends. I believe we are at a point where we need to move beyond that. We need to move towards acceptance, inclusion and practical action. What adjustments can we make to improve the quality of life for autistic people? What can we do to help autistic people thrive; be it at home, their place of education or work or in general society? What can we do to educate and inspire positive change? Are we listening?
Thankfully, there are excellent organisations out there that are trying to do all of those great things. Sadly they don't have as loud a voice, but hopefully, that will change in time.
I will eventually get back to this with links as I'm not particularly eloquent and other people can explain this and more about the subject a lot better than me. I'm about 10 hours into creating a website. No sleep tonight!
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Post by Danielle on Apr 4, 2018 0:51:22 GMT
Hey friends, I'm sure you've seen the "Light It Up Blue" and Autism Speaks posts today as it is Autism Awareness Day/Month. I want to take a moment of your time to ask you to reconsider supporting these campaigns with a little insight from the autistic community. Why are so many autistic people against Autism Speaks? Well, they are harmful to autistic people. They don't let us speak or value our experiences and input, in fact, they actively exclude us. They have been known to cash in on fear mongering and push it as a "terrifying disease" that dooms families. They treat us like a burden and a tragedy. They have recommended dangerous and traumatic treatments (bleach enemas, chelation and ABA which is akin to gay conversion therapy and has high rates of PTSD). They have given a voice to the anti-vaccination movement. They have next to no input from autistic people and an ex-staff member who left was treated appallingly. Oh, and why is it 'Light It Up Blue?'. Autism was once thought to be a male condition (or more specifically, boys, as adults get very little representation). Newsflash: It's not, and evidence is pouring in to suggest women have been underdiagnosed due to presenting differently. Autistic people want to be accepted, included and respected. We don't want to be 'cured' or erased. So, how about we go #RedInstead? Or #LightItUpGold? There are plenty of alternative ways to show your support. Please read the 'ActuallyAutistic' hashtag on Twitter to hear our side of the story. Thank you. We appreciate it. I'm happy to answer questions if anyone has any. I've tried to keep this relatively short and sweet so as not to bore you. I knew a little boy, he was 11 when we met. We became best friend and he was autistic, so, I talked with his mom about him, trying to understand the situation in which he lived and I learned how to know his world and how to talk to him. Now, he is 16 and is a little regional champion of Rubik cube. From this, I've learned one thing in absolutely: we should just listen to the people that seem like different and learn from them, we should know more, see more and don't be scared to know the things. Three years ago, I started to learn about Asperger's syndrome with an Italian series that now sound like stupid but thanks to that I've started to support those peoples, and I think that they are incredibly amazing. So I'm with you 💪 Thank you for sharing this! What a great story. :-) |
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Post by Dani on Apr 4, 2018 11:18:16 GMT
Thank you for doing that. <3 I don't expect everyone to agree, of course, but even being able to have this dialogue is brilliant. I still love you. ;-) People are well-meaning when sharing these posts and are unaware of the connotations it has or its origins. It seems like a helpful thing to do. I get that, but when we know the harm this organisation has done (and continues to do), it becomes impossible for us to ignore. Every year we see this campaign that originates from AS and how they continue to push hateful narratives and stereotypes while doing very little of what they claim to do: help autistic people and their families (and they make absurd amounts of cash with their exploitative methods and fear inciting marketing techniques). It all stems back to them cashing in on this, and that makes me so uncomfortable. The blue/boy's only stereotype has prevented women, girls and trans people from being diagnosed and receiving the support they need. It's not at all representative of the spectrum. "Nothing about us without us" is a great quote, and it's about time self-advocates were involved, to show solidarity. Most people are aware of autism by now. Awareness is excellent, but the problem is when that is where it ends. I believe we are at a point where we need to move beyond that. We need to move towards acceptance, inclusion and practical action. What adjustments can we make to improve the quality of life for autistic people? What can we do to help autistic people thrive; be it at home, their place of education or work or in general society? What can we do to educate and inspire positive change? Are we listening? Thankfully, there are excellent organisations out there that are trying to do all of those great things. Sadly they don't have as loud a voice, but hopefully, that will change in time. I will eventually get back to this with links as I'm not particularly eloquent and other people can explain this and more about the subject a lot better than me. I'm about 10 hours into creating a website. No sleep tonight! All good! So you're saying these people use the campaign to get money for something that doesn't help you at all? Or is your opinion that they focus on the wrong things? I'm trying to see the big picture here and staying objective - I'd obviously want all the money to go to the people and families who need them, but maybe that's not the main goal for this organisation? It's good that there are other organisations doing that though. But it's weird that they are not supporting them somehow or mentioning them, which makes this whole thing a bit weird and suspicious indeed. TBH, I haven't looked into their campaigns at all, and maybe I should see what they are saying and promising, before I say anything at all. That picture you posted is eight years old? Are you sure it's still the same? |
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Post by Dani on Apr 4, 2018 11:27:08 GMT
And about that last part of your post. It's more about politics than organisations.
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Post by Danielle on Apr 5, 2018 11:00:22 GMT
Sorry about that, I've just updated the photo for one with more up-to-date statistics! :-) This will probably be a TL;DR. Yeah, it is a combination of both of those things. Only 4% goes to family services, and that is the main reason people donate to them in the first place. They are in the position to do incredible things with their funding and campaigns, yet autistic people are at the back of the queue. They have celebrity endorsements and millionaires on their board of directors. They could be offering life-changing services, and run campaigns that make meaningful progress for the community, but they aren't. They have marketing videos that are intentionally fearmongering for parents. There was one that was like a horror movie and included lines like “I know where you live” and “If you’re happily married, I will make sure that your marriage fails” and “You are scared, and you should be”. They had a separate video where a parent fantasised about killing herself and her child while the kid was in the room. It's hurtful. I can't see how any good can come from demonising us in that way, other than of course urging people to donate. It is not conducive to an inclusive and progressive society, that's for sure. If a community of the people you claim to support (and speak for) is against you, maybe it's time to rethink? Organisations as big as AS can have a massive influence on politics. Here in the UK, our equivalent is called National Autistic Society (not perfect, but getting there), and they regularly have representatives in parliament where they push the agenda. They listen to the input of autistic people and try to find a balance that suits and serves all of us. They run campaigns that seek to improve understanding and show what you can do to make life easier for someone on the spectrum. They offer online courses and training to GP's, teachers etc. They help people with seeking diagnosis and support. NAS Campaign for example www.autism.org.uk/get-involved/tmi/film.aspxPractical solutions www.autism.org.uk/get-involved/tmi/actions.aspxGoing Gold autisticuk.org/going-gold-for-autism-acceptance/Great US alternatives autisticadvocacy.org/projects/community/autism-acceptance-monthautismwomensnetwork.orgwww.autismacceptancemonth.com(There are plenty of others that are doing good work, but it's best to look locally). Posts against Autism Speaks medium.com/@kirstenschultz/a-roundup-of-posts-against-autism-speaks-5dbf7f8cfcc6 |
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Post by Dani on Apr 5, 2018 17:01:28 GMT
Thanks so much Danni for clearing things up and making us aware!
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Post by toooldtoosmall on Apr 29, 2018 0:36:38 GMT
This is something i will have to look into. I fairly recently got engaged to my wonderful fiancee and her son is autistic. That was a step learning curve but im getting there. He's an amazing kid and i love him like my own. I shall have to ask my fiancee if she knows about this orgsnisation as ive never heard of it
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