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23 Reviews
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April 7, 2014

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April 7, 2014

Autism Speaks does not speak for me! I have autism and can speak for myself. All Autism Speaks has done is dehumanize me and others with my condition (presenting us as burdens or as a "reverse lottery ticket"), and use its money and clout to crowd out and silence autistic charity organizations that are actually staffed by and supported by those with autism. If you really want to help those with Autism, start by boycotting Autism Speaks!

Ways to make it better...

If I had to make changes to this organization, I would...

Insist on the presence of autistic people in meaningful positions, and that every movie and press release is screened for approval by those with autism to avoid a repeat of travesties like the film "I am Autism"

More feedback...

Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2014

February 15, 2014
1 person found this review helpful

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February 15, 2014
1 person found this review helpful

AS came into my area and raised close to 2M but only gave $36,000 back to the community. Give your money to TACA (Talk About Curing Autism). 95% of TACA's programs are FREE!

Ways to make it better...

If I had to make changes to this organization, I would...

Stop funding silly studies and place more focus on the study of biomedical treatments where children with autism are recovering.

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Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

None

When was your last experience with this nonprofit?

2013

January 12, 2014
2 people found this review helpful

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January 12, 2014
2 people found this review helpful

I once went to an AS rally/fundraiser. What I saw was a huge echo-filled building full of bouncing noise, including a rock band at the center. And a LOT of crying distressed autistic children. It's a social/sensory disability!!! How insensitive of the organizers. I was totally turned off by a charity that has zero consideration for the kids it serves, calls them horrible burdens (in their presence!) Not to mention they still hint, against tons of solid scientific proof, that vaccines cause autism,

Ways to make it better...

If I had to make changes to this organization, I would...

Dismantle it.

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Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2010

January 12, 2014
1 person found this review helpful

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January 12, 2014
1 person found this review helpful

Fear mongering, dehumanization, eugenics, NO autistic people in leadership positions.
They endorse treatments that are considered torture (according to the UN).
They fund bad science.

If you donate $100 to this organization, only about $3 of that will actually go towards helping
Autistics and our families. I urge you to personally research ANY "nonprofit" before lending your time or your money.

Ways to make it better...

If I had to make changes to this organization, I would...

It needs to be shut down. There are better autism charities.

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When was your last experience with this nonprofit?

2014

January 9, 2014
1 person found this review helpful

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January 9, 2014
1 person found this review helpful

This organization does not deserve its nonprofit status! It is nothing short of a hate group spreading fear and lies about autistic people. I think it says a lot about an organization focused on autism, that they do not have a single autistic person serving in a leadership position. Add to that the fact that only 4% of their budget goes to supporting autistic people and you have an organization that is not worthy of anyone's money.

Ways to make it better...

If I had to make changes to this organization, I would...

I would shutter it and start from scratch. Its current mode of operation is too cancerous to continue.

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How does this organization compare with others in the same sector?

Badly

How much of an impact do you think this organization has?

A lot

Will you recommend this organization to others?

No

When was your last experience with this nonprofit?

2014

January 9, 2014
1 person found this review helpful

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January 9, 2014
1 person found this review helpful

AWFUL nonprofits. Autism Speaks mostly funds its own salaries, makes a big deal out of how awful autism is. The people it is supposed to "help" are rejecting it and a boycott is underway. Panera Bread, Autism Parenting Magazine, and many individuals are joining in the boycott. Autism Speaks has, since its start, refused to have Autistic people in leadership or decisionmaking positions. Its one "token" Autistic member quit this year in disgust. They also try to influence national planning about autism without consulting the people whom they say they want to "help." They make Autistic people feel bad about ourselves on a regular basis. I felt quite frightened to even let anyone know I was Autistic after I read their site when I first got a diagnosis. Here is some of what they say about us: "http://autisticadvocacy.org/2009/09/horrific-autism-speaks-i-am-autism-ad-transcript/ " I am autism.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.
I know where you live.
And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.

Ways to make it better...

If I had to make changes to this organization, I would...

Get rid of it, actually. With language like the above, and with their strong commitment to finding cures and preventing us, I can see no use for them. I would redirect all their funds back to local Autism Society chapters, to advocacy groups that have a commitment to including Autistic people such as Autistic Self Advocacy Network and Autism Women's Network. ASAN is at http://autisticadvocacy.org/ and AWN is at http://autismwomensnetwork.org/ I would also donate to AANE at http://www.aane.org/

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How does this organization compare with others in the same sector?

Badly

How much of an impact do you think this organization has?

A lot

Will you recommend this organization to others?

No

When was your last experience with this nonprofit?

2013

January 9, 2014
1 person found this review helpful

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January 9, 2014
1 person found this review helpful

Autism Speaks is the only organization that claims to help a group of people and yet calls them "tragedies" and "burdens". Autism Speaks says Autistics make their families' lives miserable. Autism Speaks does not have ANY Autistic in their Board of Directors. Autism Speaks lies in their website and uses only 4% of their budget in services for families - most families are DENIED services. Autism Speaks uses a lot of money trying to find ways to prevent Autistics from even being born (eugenics). Autism Speaks paired up with the Judge Rotenberg Center, an "school" that used electric shocks on its students, and this is torture.

Ways to make it better...

If I had to make changes to this organization, I would...

End it and start over with at least 50% of Autistics on the board

More feedback...

Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2014

November 13, 2013
4 people found this review helpful

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Review from Guidestar
November 13, 2013
4 people found this review helpful

As the parent of a child on the spectrum, I have been consistently dismayed - and increasingly outraged - by the continual fearmongering that is central to the communications strategy of Autism Speaks. This week, again, I was shocked to read statements on their website (by founder Suzanne Wright) that autistic children are "missing" children and that families with kids on the spectrum are "not living." The idea that this organizations somehow represents autistic people is built into their very name, and it is shameful that they have not recognized that they way they frame autism only perpetuates and perhaps even magnifies fear and stigma that ultimately functions to marginalize people like my son.

Ways to make it better...

If I had to make changes to this organization, I would...

Most immediately, Autism Speaks needs to change how it frames the issue. But this is not as simple as hiring a branding firm. Autism Speaks needs to engage more constructively with people on the spectrum who can bring their lived experience to shaping how the organization presents autistic spectrum disorder, improve its political analysis and use its power to combat discrimination, and hold it accountable for the message it delivers.

More feedback...

Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

Some

When was your last experience with this nonprofit?

2013

June 16, 2013
3 people found this review helpful

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Review from Guidestar
June 16, 2013
3 people found this review helpful

This organization continually ignores autistic people, despite their efforts to contact the organization and petition against it. The Autism Self Advocacy Network (ASAN), made up entirely of autistic people, is strongly against this organization.
I put below that this organization has no impact
because they have no positive impact; unfortunately, their negative impact has gotten autistic people killed and murderers excused.

More feedback...

Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

None

When was your last experience with this nonprofit?

2013

April 23, 2013
4 people found this review helpful

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Review from CharityNavigator
April 23, 2013
4 people found this review helpful

As an autistic person, I have been and continue to be disgusted and offended by Autism Speaks. I don't understand why people continue to support an organization that uses cruel and extreme stereotypes to generate fear and pity of autistic people. If they were a worthwhile charity to donate to, they wouldn't need to resort to such awful tactics to get people to donate to them. They stigmatize and harm the very people they claim to be helping, and they refuse to listen to what autistic people have to say. The way they portray autism, you would think that we are not people, but are monsters, and that is unacceptable. There are decent autism charities out there (ASAN, for example), but Autism Speaks is not one of them.

More feedback...

Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2013

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