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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

33 Stories from Volunteers, Donors & Supporters

8

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.

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

9

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!

13 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

10

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

10 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

12

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

12

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

15

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

16

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!!

14 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!

10

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!

15

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,

14

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.

9

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.

10

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.

10

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.

12 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

10

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

11

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