Thank you. This is one of the most clearly and lovingly articulated observations of the lack of nuance and inability to accept the complexity of navigating advocacy (and life in general).
“True advocacy requires more than criticism—it demands a vision for something better, a safety net that catches those who would otherwise fall. Baldwin’s call to embrace the fullness of human experience, with all its contradictions and complexities, serves as a reminder that change must come not at the expense of the vulnerable, but with a mindful commitment to their care and dignity.” This makes so much sense!
“We live individual lives, unique and complex. Yet, we are connected to one another. Responsible for one another. Rise and fall with one another. That is what makes advocacy so hard. Because we are these individual threads tangled up in one another. We could build something beautifully strong together. But we often choose otherwise.
I felt the same way when i read the news about UHC denying ABA coverage to its insureds in certain states, like Louisiana, bc it will disproportionately impact poor people, people who have no other therapy options available, etc.
Yes! To say you side with UHC for denying care to families in need is shameful. That ProPublica article does deserve criticism though. It could have focused on how ABA siphoned funding from all other legitimate research into support for autistic children. Gave itself a high price tag and now families are going to be left with nothing.
I think that indeed it is always important to consider the people an organization serves-or could serve-and where to direct them in the fallout of these large organizations. The good news is, many viable alternatives to Autism Speaks exist. The orgs that helped you at their walk, for example-they exist with or without Autism Speaks. They may also table at other disability related events.
Every state has a P&A agency, a center for independent living, and a developmental disability council. The Arc also has chapters across the country. So there are many organizations that I would argue do more to help people with developmental disabilities, including autistic people, than the mega charity Autism Speaks does.
You kind of prove how unhelpful Autism Speaks is in your essay by talking about the iPad they gave your son that didn't even have an AAC app pre-installed on it. They also only had 50 iPads? For an organization that brings in at least $35 million a year? This is one of the biggest problems with AS and is one of the things killing them as an organization-they don't directly help in most cases. Less than 2% of their budget goes towards family services. They aren't a provider organization like some chapters of The Arc, for example. Most of their services are a hotline you can call and are free downloadable toolkits. These are easily replaceable. ASAN offers tons of great free resources that are also in plain language and easy read. I would argue these are of much better quality than Autism Speaks's resources.
I think your point is still valid though-the families in Canada who may have relied on AS for those resources will now need to turn elsewhere. I don't live in Canada, so there isn't much I know about there specifically. I assume part of the reason they're closing in Canada is because they weren't helping families to the extent they should've been and ran out of money. Though I also think the public opinion towards their organization has continued to sour over the years because of all their missteps. So when a big organization like Autism Speaks fails, the failure is on them, not the people they serve. The people they serve deserve better. The alternatives do exist and have for many years. Autism Speaks has gotten in the way of them.
One example I can give for Canada though, as for a good alternative, is an organization called Inclusion Canada (https://inclusioncanada.ca/). That may be a good place for Canadians with disabilities and their relatives to start.
In case I'm not clear, I'm trying to be respectful and act in good faith with this comment. I like you and your work. There are a few things I disagree with here but it's because of the angle that I specifically come at it from. Take care.
Saw the edit-I wasn't aware there would be more parts and that it wasn't just about AS. Thanks for clarifying. I come at this from a very specific angle as a historian and plan on writing a Substack about AS's history from the perspective of the ND movement for their 20th anniversary in February. So they've been on my mind lately lol.
Thank you. This is one of the most clearly and lovingly articulated observations of the lack of nuance and inability to accept the complexity of navigating advocacy (and life in general).
This was brilliant!
“True advocacy requires more than criticism—it demands a vision for something better, a safety net that catches those who would otherwise fall. Baldwin’s call to embrace the fullness of human experience, with all its contradictions and complexities, serves as a reminder that change must come not at the expense of the vulnerable, but with a mindful commitment to their care and dignity.” This makes so much sense!
“We live individual lives, unique and complex. Yet, we are connected to one another. Responsible for one another. Rise and fall with one another. That is what makes advocacy so hard. Because we are these individual threads tangled up in one another. We could build something beautifully strong together. But we often choose otherwise.
Y’all be easy. And love on one another.”
And THAT! So true!
All of this! Thank you!
I felt the same way when i read the news about UHC denying ABA coverage to its insureds in certain states, like Louisiana, bc it will disproportionately impact poor people, people who have no other therapy options available, etc.
Yes! To say you side with UHC for denying care to families in need is shameful. That ProPublica article does deserve criticism though. It could have focused on how ABA siphoned funding from all other legitimate research into support for autistic children. Gave itself a high price tag and now families are going to be left with nothing.
I think that indeed it is always important to consider the people an organization serves-or could serve-and where to direct them in the fallout of these large organizations. The good news is, many viable alternatives to Autism Speaks exist. The orgs that helped you at their walk, for example-they exist with or without Autism Speaks. They may also table at other disability related events.
Every state has a P&A agency, a center for independent living, and a developmental disability council. The Arc also has chapters across the country. So there are many organizations that I would argue do more to help people with developmental disabilities, including autistic people, than the mega charity Autism Speaks does.
You kind of prove how unhelpful Autism Speaks is in your essay by talking about the iPad they gave your son that didn't even have an AAC app pre-installed on it. They also only had 50 iPads? For an organization that brings in at least $35 million a year? This is one of the biggest problems with AS and is one of the things killing them as an organization-they don't directly help in most cases. Less than 2% of their budget goes towards family services. They aren't a provider organization like some chapters of The Arc, for example. Most of their services are a hotline you can call and are free downloadable toolkits. These are easily replaceable. ASAN offers tons of great free resources that are also in plain language and easy read. I would argue these are of much better quality than Autism Speaks's resources.
I think your point is still valid though-the families in Canada who may have relied on AS for those resources will now need to turn elsewhere. I don't live in Canada, so there isn't much I know about there specifically. I assume part of the reason they're closing in Canada is because they weren't helping families to the extent they should've been and ran out of money. Though I also think the public opinion towards their organization has continued to sour over the years because of all their missteps. So when a big organization like Autism Speaks fails, the failure is on them, not the people they serve. The people they serve deserve better. The alternatives do exist and have for many years. Autism Speaks has gotten in the way of them.
One example I can give for Canada though, as for a good alternative, is an organization called Inclusion Canada (https://inclusioncanada.ca/). That may be a good place for Canadians with disabilities and their relatives to start.
In case I'm not clear, I'm trying to be respectful and act in good faith with this comment. I like you and your work. There are a few things I disagree with here but it's because of the angle that I specifically come at it from. Take care.
Saw the edit-I wasn't aware there would be more parts and that it wasn't just about AS. Thanks for clarifying. I come at this from a very specific angle as a historian and plan on writing a Substack about AS's history from the perspective of the ND movement for their 20th anniversary in February. So they've been on my mind lately lol.