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Autism Speaks Inc

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Nonprofit Overview

Causes: Health

Mission: At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders. We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society and to bringing hope to all who deal with the hardships of this disorder.

Programs: Research/science: the programmatic goals of the science/research program strive to improve the lives of people affected by autism today, as well as improve their future by advancing scientific research. The research focuses on diagnosis, treatment, service delivery and prevention. In 2014, autism speaks launched mssng (pronounced "missing"), its historic collaboration with google to create the world's largest genomic database on autism. The ambitious project will sequence the whole genomes of 10,000 families affected by the disorder. The result will be an autism research open source database containing extensive diagnostic information as it pertains to environmental, behavioral, and medical factors associated with autism. This could uncover various forms of autism and lead to individualized treatment for people living across the autism spectrum. A study co-funded by autism speaks found autism rates doubled among children whose mothers were exposed to high levels of particulate air pollution (smog) during pregnancy. The findings suggest an urgent need to revisit public health policies on pollution limits. In addition, autism speaks funded two major research projects to advance understanding of autism's gut-brain connection. The first explores the role of the microbiome (intestinal bacteria) in driving or relieving autism symptoms. The second focuses on chronic constipation, a serious problem for many people with autism. Research launched with an autism speaks trailblazer grant provided new support for the theory that autism symptoms can result from inflammation and cell distress. Based on those findings, the study's authors are developing and testing new autism medicines. Researchers, also funded by autism speaks, successfully field-tested a simple, practical method that non-specialists can use to screen for autism among schoolchildren in poor regions around the world. Such reliable yet easily administered tests are urgently needed in developing countries. A landmark study funded by autism speaks produced a comprehensive estimate of autism's costs to individuals, families and society. The lifetime cost of care averages $1. 4 million to $2. 4 million, depending on whether an intellectual disability is involved, and includes medical care, lost income, special education and residential supports. The yearly cost to society in the united states is $236 billion a year. This information is crucial for guiding public policy and planning services across the lifespan. In 2014, autism speaks spent $ 14,369,900 in grants and awards for new and continuing projects in the following categories: a. Special projects ($6,684,854) -- autism speaks-initiated projects aimed at addressing specific needs within the autism research community. Autism speaks staff work in conjunction with investigators to develop projects that may include improvements to research infrastructure, rapid responses to new and highly visible public health initiatives, or facilitating collaborations between investigators to address complex research issues from a multi-disciplinary perspective. In 2014, special projects included the autism and developmental disabilities monitoring network (addm), the preclinical autism consortium for therapeutics (animal model development), dsm-5 (diagnostic and statistical manual of mental disorders, fifth edition) comparisons, and projects around early intervention. B. Treatment, basic research and dissemination projects. These include the autism speaks autism treatment network ($2,138,915), basic & clinical studies ($3,199,364), gi and neurobehavior studies ($383,967), trailblazer award ($100,000), and treatment studies ($743,013). C. Training grants, including meixner translational postdoctoral fellowships ($594,477) and weatherstone predoctoral fellowships ($525,310).

awareness, family services, advocacy: awareness is a cornerstone of the autism speaks mission. In its fifth year, autism speaks' global light it up blue awareness campaign reached new heights. More than 10,000 iconic landmarks, businesses, communities and homes in 136 countries united on world autism awareness day, april 2, to shine a bright light on autism. At a special lighting ceremony at the empire state building, autism speaks and sesame workshop, the nonprofit behind sesame street, announced an initiative to help communities "see the amazing in all children" and reduce the stigma surrounding children with autism. Autism speaks hosted its seventh annual world focus on autism during the united nations general assembly. As heads of state gathered in new york city, first spouses from asia, africa, latin america, europe and the middle east gathered for a forum that united the global autism movement. Hosted by autism speaks co-founders suzanne and bob wright, dignitaries heard about global strategies from dr. Liri berisha, former first lady of albania and president of the albanian children's foundation, and mrs. Ban soon-taek, spouse of u. N. Secretary-general ban ki-moon. Family services is committed to connecting and empowering individuals with autism and their families with resources to improve their quality of life today and into the future. Autism speaks continued to focus on safety in the autism community. Nearly half of those with autism wander. In partnership with the national center for missing and exploited children (ncmec), autism speaks responded to 150 wandering incidents. In addition, autism speaks established the swimming and water safety scholarship fund, which enables service providers to offer scholarships to financially disadvantaged people with autism. Nearly 1,500 swimmers benefited from scholarships. Throughout the year, autism speaks focused on increasing the housing and community living options for adults with autism and adolescents entering adulthood. A national town hall series brought them together with families, adult-service providers and government officials to discuss challenges and opportunities. Autism speaks also launched an initiative to develop housing and community-living policies and programs. The goal is to ensure diverse options by collaborating with a wide range of stakeholders. The autism response team, a group of autism speaks staff members specially trained to connect individuals with autism and their families to tools and resources, responded to more than 47,500 calls and emails, including nearly 4,000 in spanish. This marked a 55 percent increase from the year before. In 2014, autism speaks' state advocacy initiatives for autism insurance reform were successful in several states: utah; nebraska; maryland; washington; and the u. S. Virgin islands. Autism speaks' federal advocacy efforts resulted in the passage of the autism cares act, which authorizes $1. 3 billion in federal funding for scientific research. That includes, for the first time, a focus on issues surrounding the transition to adulthood. In addition, after a nearly decade-long campaign by autism speaks and its partners, the achieving a better life experience act (able) was signed into law. It is widely considered the most significant disability-related legislation since the americans with disabilities act (ada) of 1990. Able allows states to create tax-preferred savings accounts -- much like 529 college-savings accounts -- for people with disabilities, generally without losing eligibility for medicaid, supplemental security income and other benefits.

Community Stories

44 Stories from Volunteers, Donors & Supporters

2

Donor

Rating: 1

After reading reviews on Autism Speaks, I have decided to look elsewhere to help fund services for those who have been impacted by Autism. After doing a good amount of research, I found the Chicago Autism Project. Yes, they are focused in Chicago and work through partner organizations to fund Diagnostic Evaluations and ABA Therapy.

8

Volunteer

Rating: 1

if i could rate this company zero stars i would. this company treats autism like a diese. and they want to find a cure so bad! please do not donate.

8

Volunteer

Rating: 2

I selected this charity on Facebook because of my daughter who is 16 with autism and passed away June 2nd if I would have known what I know now about this organization and there lack of help they would not have seen one dime of my money you should be ashamed profiting from others how about getting a JOB

Review from Guidestar

13 Donna L.3

Client Served

Rating: 1

If I could give zero stars, I would! Autism Speaks is a hate group that seeks to eradicate me and people like me, instead of promoting acceptance. How would you feel if there was an organization out there that's sole purpose was to eradicate the very thing that makes you who you are? They ignore and silence the voices of the very people they claim to be all about. In their eyes, we are not people, we are a pandemic. We are not worthy of acceptance and tolerance. We do not deserve to walk among you. We are less than human. We are a disease - a filth that must be scrubbed away, lest we pollute the population. Yes, by all means, support this group. Keep sending us the message that we don't deserve to be.

Review from Guidestar

14 Tilly H.

General Member of the Public

Rating: 1

Somehow my autistic son was drawn into asking people to donate to this charity in honour of his birthday - in itself a noble and admirable act. They must have got to him on Facebook which is where he spends a lot of his time. He had already raised 159 pounds before I realised what had happened. I asked him why he chose this charity and he said he didn't realise that there was more than one Autism charity. I am disgusted at their blatant exploitation of his diagnosis as he self-declared as on the spectrum in his profile. If he had known what they stand for he would never have chosen them. A big thumbs down.

Review from Guidestar

15

General Member of the Public

Rating: 1

If I could give this group 0 stars, I would. The way that they talk about autism is absolutely horrifying. For example, look at their videos "I Am Autism" and "Autism Everyday," linked below. Don't donate to them; find someone better instead.

25 Mason.85

Client Served

Rating: 1

We went to one of their events last month and it was not what a parent of a child with autism would expect. I get the feeling that volunteers are there to only raise money and have no clue what life is like for an individual with autism. It was loud and chaotic. So sad.

19

Client Served

Rating: 1

Horrified how they speak about those they are suppose to support and love. Would NEVER recommend.

18

General Member of the Public

Rating: 1

Auti$m $peak$ was inspired by their grandson who is autistic.
(How can autism speak through non-autistic people, anyway? Bull.)
Their grandson obviously lives with his mother, their daughter...Katie.

Katie spends much of her time on social media (@katiewr31413491) trolling autistic adults and promoting the idea that vaccines cause autism and treatments that are harmful to autistic people, especially children. Many of Katie’s followers promote a product called “Miracle Mineral Solution” or, “MMS” which is the use of an industrial bleach solution to “cure” autism! They actually feed their children bleach, via mouth/food and even enemas. Katie believes autism is an epidemic and that her child became “sick” with autism after being vaccinated. She runs a charity, too, and she supports many others against autistic people.

If you look at the badges on the bottom of the autism speaks website, the awards (like how I got to this page) you can clearly see these were from 8 years ago...if you read closely, you’ll find any good words are written by the owners themselves.

This is a very toxic organization for autistic people. It doesn’t look like it at first glance, of course, being touted by governments and celebrities...to the eyes of those not suffering from their toxic messages and tactics - but it is. Please listen to #actuallyautistic people who are speaking for themselves and trying to be heard overtop of orgs like A$.

Review from Guidestar

38 Laura P.3

General Member of the Public

Rating: 1

Please do not give money to this organization. Consider the National Autism Society instead. Autism Speaks has a long history of using scare tactics to raise money, which stigmatizes autistic children and adults. With only 3% of their money going to help actual autistics, and C-Level management making six figure salaries, more money is spent on jet fuel than for people with autism. I am an autistic adult and I have been hurt by A$ very badly, as have almost every other autistic adult I know. They are spending lots of money on research for a "cure" which can only be found through gene "therapy" (eugenics). We have a different brain structure. We can't be "cured" any more than a person born with profound low intelligence can be cured. We need support and help to live well with our condition- to work and to have good relationships. We can't do that when the main messages we and others hear about us are negative. We don't have the confidence. A$ thinks so negatively about us that they don't even consult autistics or have us on board positions. The only one they did quit because he was so frustrated that they were not listening to him! How dare they speak for us! And don't say only the "high functioning" ones of us are complaining and not the nonverbal children considered severe that parents are raising now. Many nonverbal autistics are brilliant and have shown so through the use of augmented technology used today. Please, for the sake of our future, do not support Autism Speaks.

Review from Guidestar

20

Donor

Rating: 3

I hope that the negative reviews I am reading here are false!!!!.... I missed reading these before I signed up to help raise money for your non profit organization, in honor of my birthday. I am very close to ending my fundraiser a week early.... I hope my further reasearch proves these negative reviews wrong for the sake of everyone involved. I began this fundraiser for Autism Speaks to help those with Autism have a voice and spread awareness!!!
(And I'm rating 3 stars simply because the comment box mandates the reviewer to choose a rating before being able to submit a review, so I'm.trying to keep it fair until I come to a final.decision on this organization)

Review from Guidestar

28

Client Served

Rating: 1

If I could give this "charity" zero stars I would. This organization is a hate group, plain and simple. They use dehumanizing language to describe autistic people, are inappropriate in their handling of funds, and silence autistic voices. Please consider other organizations before you donate.

6

Donor

Rating: 5

Northwest Insurance Brokers is proud to team up with Mutual of Enumclaw Insurance Company and donate to the Autism Speaks Inc. I personally want to say this is close to my heart with my niece having 3 boys with some form of Autism. So Amie this is in your behalf and your family.

Review from JustGive

25

Professional with expertise in this field

Rating: 1

If I could rate AS with zero stars, I would. AS is generally hated by individuals with Autism as they ignore the voice of the very individuals they profess to speak for. The AS walks raise thousands of dollars in communities yet fail to return the funds to the very people who need it the most. Their executives make obscene salaries for a non-profit and not a single individual with Autism is on their board. Money donated will NOT benefit those with Autism nor will it benefit the families. This organization is a sham! Donate your hard earned money to ANYONE else!

28 Dave86

General Member of the Public

Rating: 1

This "nonprofit" spreads highly dangerous propaganda heavily prejudiced against autistic people. "Autism Speaks" is run by nigh-exclusively non-autistic people, and pushes an abusive and harmful "cure"-centric agenda, whereas the overwhelming majority of autistic people believe that a "cure" would amount to abusively removing the personalities of autistic people, or committing genocide with ableist motives. Very little money or effort is spent by these people trying to sincerely improve the lives of autistic people, and the organization still continues to spread unwarranted fear, hatred, and falsehoods of autism, and therefore, autistic people.

Review from Guidestar

23

General Member of the Public

Rating: 1

This group advocates for the eugenics of autistic people, tries to scare parents of autistic children through its ads, does not actually let autistic people speak as there are no autistic people on its board, and contributes very little of its donations to improving the lives of autistic children, teens, and adults.

Review from Guidestar

19 Whouffaldi

General Member of the Public

Rating: 1

Autism Speaks ignores autistic voices and exploits autistic people for personal gain. They do not care about the very people they claim to support and don't even have any autistic people on staff who can see them for what they really are. Autism Speaks hurts the autistic community through lies, exploitation and ultimately eugenics.

Review from Guidestar

20

General Member of the Public

Rating: 1

I wish I could give this "charity" zero stars! Autism Speaks is a hate group that uses almost all of its resources making money for themselves and supporting the dehumanization and torture (according to the UN) of Autistic people. People talk about the 4% statistic all the time to show that AS does not do enough for the community. I'd argue even less than that, since their idea of "support" includes supporting abusive "therapies" like ABA and organizations like the Judge Rotenburg Center that have been condemned by the UN multiple times. The recent appointment of 2 Autistic board members is one tiny step in the right direction, but it doesn't really change anything. They don't care and they don't listen (ironic, considering their slogan).
If you really want to help, please donate or volunteer for good Autism charities that fight ableism and dehumanization, such as the Autistic Self Advocacy Network or Autistic Women's Network.

Review from Guidestar

18

Professional with expertise in this field

Rating: 1

This organization (it isn't really a charity) spends more time--and money!-- fearmongering than anything else. In addition, they advocate for the wiping out of an entire subset of people--those of us with autism.

Review from Guidestar

22

Former staff

Rating: 1

I resigned from my position with Autism Speaks because of there lack of ethics. I have a brother with Autism and had high hopes of making a difference for him and other like him. I was sickened to find out that the attitude toward family members is just the opposite. Maybe because we see their greed. I remember when there were parents leading the organization but now the leaders in NY only care about the money to pay the salaries of their unqualified friends hired at the top to replace those undervalued parents. They don't want family on staff and they make that clear! Very disappointing! I would not give them a cent

Review from Guidestar

22

General Member of the Public

Rating: 1

I had to come here to review Autism $peaks again because the cowards disabled their rating on Facebook when Autistic people spoke out about how dissatisfied they are with this so called "organization" who calls us broken and burdens. Autism $peaks does nothing but spread lies and silence autistics. We have had enough and WON'T be silenced any longer!!

17 Luke6

General Member of the Public

Rating: 1

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!

14

General Member of the Public

Rating: 1

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!

17

General Member of the Public

Rating: 1

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,

17

Volunteer

Rating: 1

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.

11

Professional with expertise in this field

Rating: 1

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.

12

Professional with expertise in this field

Rating: 1

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.

12

General Member of the Public

Rating: 1

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.

14 Devon K.

General Member of the Public

Rating: 1

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.

Review from Guidestar

11

General Member of the Public

Rating: 1

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.

Review from Guidestar

12

General Member of the Public

Rating: 1

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.

Review from CharityNavigator

2 Anita7

Donor

Rating: 5

I know many people with Autism and I donated for support of those with Autism. They do many wonderful things like a walk to raise awareness.

Review from CharityNavigator

6

General Member of the Public

Rating: 5

I am a father of 2 children with ASD. I have raised funds for Autism Speaks and have donated my money, time, and energy to supporting this organization for the past 3 years. Where to begin? For everyone that looks at the $350,000+ salary of the CEO and the ‘mismanagement of funds’ as egregious offenses, please consider the idea that 350k is less than 0.7% of the revenue for the organization ($350,000 ÷ $50,314,235 = .006956) in 2010. Choose a bank CEP if you desire a target for outrageous compensation. In order to attract quality leaders, all organizations MUST compensate. If you disagree then feel free to go to your HR department and tell them that you will gladly work for only what you need to survive – don’t fret, I know it sounds ridiculous and I’m glad you are taking the blinders off now. Incentive = motivation which will lead to accomplishing the mission. Don’t forget that key employees (i.e. board members with connections to Rx) usually know the roadblocks to success and how to get over/under/around/or THROUGH these roadblocks. I am definitely not a fan of the Rx oligopoly, in fact it makes me sick just thinking about getting sick. This organization needs people on the inside of these Rx companies with influence, political acumen, and experience in order to achieve their mission. Remember that men who do great evil also know how to cure them! For those of you that lament about your money not remaining in your area – this is the true lynchpin to the problem of finding a “cure”. That attitude right there! My money has to remain in my community – how is that beneficial to our global ASD community? This organization is attempting to undo that very problem on a scale that surpasses your understanding of tactics and strategy. Have you ever heard the term “divide and conquer”. Military commanders going back to mystical times have used the fragmentation of the enemy as the primary way to alienate and utterly destroy the opposition. As long as you maintain that “my money – my community” attitude, you are making it far easier for the enemy (society) to conquer you and your cause. You are only helping to defeat us and our attempt at uniting under a common cause.

11

Donor

Rating: 1

When my grandchildren were first dxed, I walked and donated. The more I learned about the organization, the more disillusioned I became. I no longer donate to this organization since most of its funds are used for research that does not help families at all. Most of the money donated goes to exorbitant administrative salaries and to research on causes that will generally not HELP children at all. Only about 5% of their money helps actual people in the communities where the money is raised. Note that they denied an accommodation to a mom of a special needs child who was hired and then asked if she could work at home one day per week. When they said no, she made other arrangements for her son, but then Autism Speaks withdrew their job offer. It seems to me that working one day a week from home is quite reasonable and not a big hardship on any corporation. Aside from that she made other arrangements and she had already turned down another job. Imo, these people do not listen to anyone as they are arrogant and think they know it all. They don't. I had high hopes that when they appointed Jon Elder Robison to their board, things would change, but they have gotten worse, not better.

10

Volunteer

Rating: 1

As a former volunteer for AS I was extensively involved in their fundraising efforts for 3-4 years. I also left their organization when I saw the salaries paid. In the 2010 fiscal year 16 executives were paid BASE salaries ranging from $122,473 to $387,712! YIKES! It is hard for me to justify supporting such an organization who have deep and extensive ties with BIG PHARMACY. if you research their executives, board members, and research projects there are MANY ties to pharmaceutical companies.

8

Donor

Rating: 1

I am the parent of a young adult with Autism. Over the years, we have donated and participated in fundraising and the walks. It saddens me that all that time, effort and money raised are being wasted trying to find a 'culprit' for Autism. How does that benefit that countless number of children and adults with this condition, not to mention their families? I read that an executive in 2009 left the company because of their mission statement. What about supporting and assisting the thousands of individuals in leading the most productive life possible? Statistics prove that individuals with Autism are the least likely of any special disability to achieve employment with less than 30% of the population working. And once your child turns 21, FORGET IT! Services stop and you are left hanging. This organization needs to re-focus its efforts on helping families and individuals in the spectrum and needs new leadership, starting from the chairman and working its way down.

8

Client Served

Rating: 1

I wish I could give it 0 stars. Horrible, HORRIBLE organization that seeks to erase autism and autistics from the gene pool. That's call EUGENICS. I thought it would be a support group for me and other autistics, but attending one meeting saw myself being treated like an un-person, told I was inferior, that I couldn't eve belong unless I was "fixed", etc. If you are a parent of an autistic, DO NOT GO TO THIS ORGANIZATION. EVER. There are plenty of pro-autistic and pro-neurodiversity organizations that won't treat your child like a burden or a "thing" to be fixed.

1 fhautism

Volunteer

Rating: 5

An international association that is aligned with our mission to help every individual and family member impacted by autism, with support through resources and information. We are an exhibitor at some of their walks and we have employees who volunteer to walk, in order to help with fund raising. They are also vendors at some of our conferences.

Volunteer

Rating: 5

I am personally involved with this organization. I volunteer with other educators and loved ones of those struggling with ASD. Autism Speaks offers free services to newly diagnosed families as well as reaches out to the community to advocate. I personally have handed out the materials and educated several doctor offices, therapists and schools on the free services Autism Speaks offers.

10

Donor

Rating: 1

I donated money to Autism Speaks and then read more about their "mission." They claim to seek a cure for autism. I have worked in this field for 15 years + . There is not a possible "cure" for people who already have autism. Their brain parts are different shapes and sizes for starters, and they have too many nerve cells in important areas. There's no cure for that. Therefore, with the millions and millions of $ taken by this organization, it has to be very poorly run if they don't even understand the basics.

They use the cruelly false hope for a cure to get money from families in crisis.

Review from Guidestar

10

General Member of the Public

Rating: 1

Autism Speaks professes to help people with autism, but in fact it pushes the perception of autistics as helpless upon the public. Very little of the money donated to them actually helps autistic people in any way; instead it is used for research into "curing" autism, which many autistics disapprove of! I have high functioning autism, and I was treated like a child by their representatives, as well as being treated like my "disease" was life-threatening or devastating. It impacts my life, but I would not change my autism if I could. AS simply does not speak for autistics, it speaks for its own agenda.

Review from CharityNavigator

11

Professional with expertise in this field

Rating: 1

I am a professional with expertise in the area of autism and a person with autism. • Unlike most disability advocacy groups, Autism Speaks does not include those that they claim to represent at the decision-making level in their national organization or local chapters. • Autism Speaks initiated a national Town Hall Meeting to prioritize the needs of autistic adults.7 The cost to attend this meeting was $100. Despite a few available scholarships, the majority of those who will be affected by these decisions were unable to have a voice. • Autism Speaks spent 28% of the money raised in 20081 on a public awareness campaign on autism that was so negative it caused 60 disability organizations to rise up in protest against it.6 The United Kingdom Autism Speaks organization recently disassociated from the American organization over these videos which Autism Speaks has yet to pull off of YouTube.3 • Note that grants for early intervention programs are not one of Autism Speaks’ priorities, despite research from other organizations that shows how effective it is in changing the course of development in many children with autism • Autism Speaks’ 2009 Annual Report only breaks expenditures down into 68% for Programs & Services, which includes research awareness, family services and government advocacy (shown as 100% in 2008), and 32% for Fundraising & Administration & Surplus (even more than the 21% identified in their tax figures for 2008)]. The top 2 executive salaries in Autism Speaks total over $1 million.1 • The Autistic Self-Advocacy Network has tried to seek a dialogue with Autism Speaks for years! Their response… ”Let’s just agree to disagree.” That is NOT the attitude we need to bring our advocacy groups together to resolve this conflict For more information on the conflict between Autism Speaks and the adult autistic community, please see http://www.meetup.com/ASAN-AZ/files/

5

Volunteer

Rating: 4

The reviewer who gave one star has a right to her opinion but has an agenda and distorts facts. The officer mentioned makes a little over 300K and is the chief science officer. The 990 form clearly states there was a relocation package that year. Autism Speaks' primary mission is to fund research and they do that very well. They also focus on lobbying Government for more research dollars and an act they were behind resulted in hundreds of millions of dollars in autism research. There were maybe 5 studies on autism going on in any year when Autism Speaks' predecessor organizations started and now there are hundreds. There are now over 20 states with insurance laws covering autism when there were none. Due in no small part to Autism Speaks. I am a father of a child with autism too. I could use money for therapy and things like that as all parents could. Autism Speaks is not there to give money to parents for immediate needs. Their primary purpose is funding basic research that will hopefully one day result in therapies. There are other organizations that focus more on families immediate needs.

Review from Guidestar

8

Volunteer

Rating: 1

Worst nonprofit ever. Ridiculously high salaries and very top heavy. Top officer makes almost $700,000. They don't help children with autism -- they only fund research. And only research dealing with genetic components. None of the monies that they collect actually go toward helping families. Of the nearly $66 million they brought in last year, only $26 million went to research. The rest went for salaries and operations expenses. Percent of revenue allocated to salary and expense: 26.98% salaries and 39.01% on operations expense. THESE PEOPLE ARE NOT HELPING AUTISM AT ALL.

Review from Guidestar