Free to Be You and Me... No More.
A Different Kind of School Year

TACA Is Hosting a Monthlong Virtual Autism Conference

4A6B05F7-214F-4D7C-A42D-65CB5ED56624

Here's a bright spot for all of us! TACA is hosting a virtual conference throughout the month of October. Don't laugh, it's not that far off! We have Halloween candy in our grocery stores already.  This conference will provide an opportunity to rebuild our community - after the long months of COVID isolation and frustration.  Thank you, TACA!

Learn more here.

Comments

Aimee Doyle

@Lisa - you suggested that I get involved. I have, I do, and I will continue to do so. Bernie Rimland is one of my heroes too.

Just so you know, I have put my energy into advocating for all kids and adults with autism, not just into recovering/curing my son. I'm a disability attorney - I have done special education and advocated for parents and affected kids; I have secured social security disability benefits for severely affected adults (BTW, the number of autistic adults receiving SSI for severe autism through Social Security has TRIPLED in the last decade - this is why we need to do more than we have been doing); I have sat on two boards for organizations helping individuals with neurological disabilities; I have done fundraising; I have done grant-writing; I have provided pro bono legal assistance to non-profit boards on disability issues; I have done advocacy (including testifying before the IACC); I have advocated with my senators and representatives; I have written to the Washington Post and the New York Times about the lack of coverage of severe and moderate autism, and I have marched in marches to raise awareness. I wish I could do more, but my son is profoundly affected, unrecovered, and I do what I can.

I see what you mean about cure being a "tricky" word. I certainly never though of cure as being a one size fits all. But I guess that's one way to look at it. I understand why TACA made the changes it did in its wording -you're right - you weren't doing science. I will say that what's happening now in terms of recovery isn't working for most kids, though, at least not in terms of recovering them.

I still like the term cure. I don't think it's as limited as you define it. I know something about words, and the power of words. I taught grammar, composition, professional writing, medical writing and technical writing at the University of Maryland for over a decade before going to law school at age 40 to be a better advocate for my son and those like him. I think cure is a stronger word than recovery. It's what I've heard parents, adults with autism, and adolescents with autism say to me - "I want a cure." I've seen that appeal in the eyes of those who cannot speak. I don't think it means the same thing for every person, but the word has power. I feel abandoning the word "cure" is caving to the ND movement. But that's just my opinion.

We are on the same side. I do recognize that. I want stronger advocacy, though, for the vast majority of those with autism who are not "recovering."

Lisa @ TACA

Aimee,

Some thoughts for you: we all care and want the best for our kids. Independence and great health are the goals. I stand with you.

Cure is a tricky word. It would mean a process of treatment that works the same for every human. I am not sure if one cure will do all autisms. Recovery is a better term. That would be individualized for each human.

I am also a parent - I want cures (I think there will be a need for multiple cures.) I want parents to have access for what their children need.

Since TACA does not do research it was an issue that many thought we were doing the science. There are issues with having a name that reflects what we do. We have not given up on cures (we still talk about the possibility) we just don't have the mission to find them. That mission would require more funding and science leadership. We also believe in the parents and what they want for their children - after all they live with those decisions. TACA is 20 years in as a foundation our goals are helping families and building community for our kids. That remains the same.

I encourage folks to consider -
There are over 4,000 autism charities in the U.S. with a mission statement including "autism" greater than $1MM in revenue. There are over 13,000 in the U.S. that include "autism" from $0 up in revenue.
Please consider joining a board and activate to help the one organization do what you are passionate about.
Let's put our energy to where we align with solving the issue. I know this is not something everyone can do but I would encourage seeking how to be the change you want to see. I have always believed whatever happens will come from parents. Bernie Rimland is my hero. I hope that helps.

Aimee Doyle

@Lisa -

I agree - the neurodiversity community does seem to attack any autism organization that doesn't activity promote neurodiversity. I'm sorry that TACA gets continuously attacked. I understand your reasons for changing the name to "better reflect the mission."

But it does make me sad that no major autism organization uses the word "cure" anymore. I sort of liked the word, and it's what I wanted for my son. It's what more than a few autistic adults and adolescents have said they want for themselves. It's what many parents say they want, especially if their children are severely impaired.

"Recovery" seems to have become a stand-in term for "cure". But it promises less and delivers less. The recovery rate (at least from everything I've read) for kids affected with autism is still well under 10%, and those who are severely affected seem to benefit the least from the treatments and therapies we currently have available. At best it's become certain treatments work for some kids, sometimes, and some kids recover. I speak as a parent who has tried every treatment available for the past 25+ years, from the conventional to the alternative. And my son will still need lifelong one-on-one care and support.

I'm not trying to knock the effort and progress that has been made. But I do wish those organizations that used to search for cure and had the word in their mission statements had been able to stand their ground. Just my opinion.

Lisa @ TACA

Hi all

Here is the press release
https://tacanow.org/news/news-releases/talk-about-curing-autism-announces-name-change-to-%e2%80%a8the-autism-community-in-action/

And the video for the name change:
https://www.youtube.com/watch?v=5ck73lOFa7Y

I can assure you the neurodiverse attack us any chance they get. That has not changed.

My email is lisa@tacanow.org if you have any questions.

Carolyn M

To further clarify: TACA is still informing members about treatments and ongoing research that may lead to recovery. Suramin and Microbiota Transfer Therapy have been reported on (via TACA's blog); the latter appears promising according to what I last read.

It is my understanding that TACA has only changed its name. The neurodiverse still detest TACA because TACA has not changed to reflect their views.

Beleaguered Autism Mom

Aimee I asked our local chapter leader the same question. She said Big TACA was trying to attract corporate donors and believed the name change was necessary to make that happen. I didn’t believe it so I pressed the issue and she said local chapter leaders all agreed to the name change because they were tired of being attacked by neuro-diversity advocates over the word cure.

Carolyn M

Aimee Doyle,

You can find the reason for the name change on TACA's website. Basically, it was changed to better reflect TACA's mission. If I remember correctly, Lisa Ackerman was asked directly if the change had anything to do with the neurodiverse and she stated that it did not.

TACA has not been infiltrated by the neurodiverse - the NDs still hate TACA just as much as they did before the name change. They also hate Age of Autism, the National Autism Association, the Medical Academy of Pediatric Special Needs, Generation Rescue, VOR, and at least one other organization.

Aimee Doyle

Why did TACA change their name from "Talk About Curing Autism" to"The Autism Community in Action"?

I thought they were the one autism organization not coopted by the neurodiversity movement.

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)