Autistic Advocates: Again, left to fight against Autism Speaks

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April is many things. It’s the month of Easter, most of the time. For students, it’s the month of spring break. It’s the month George Washington became the first president and the month Chernobyl exploded. 

Fifty-one years ago in April of 1970, the Autism Society decided to hold the first autism awareness month. That was seven years after the puzzle piece symbol was first designed, a symbol that many autistic people have grown to detest over the almost 60 years since its creation. Today, Autism Speaks is the primary autism organization in the United States, and it has ensured that the month continues. 

Despite repeated efforts by autistic people to change the narrative around autism awareness month, including efforts to rebrand it to autism acceptance month, efforts to push back against the typical blue color and puzzle piece of Autism Speaks and more have generally  failed to influence the masses.  

Autism Speaks was founded in 2005 by Bob and Suzanne Wright after one of their grandchildren was diagnosed as being autistic. That effectively set up the intent of the organization for the next 16 years; it has only ever been an organization by, and for, the parents and grandparents of autistic people and never for the autistic people themselves. 

The organization has faced many controversies over the years, from the fact that there is not one autistic person on their board, to their commercials which display autistic children as monsters who drive apart marriages, to the fact that in 2010 they still wouldn’t say that vaccines didn’t cause autism and to the fact that, until 2016, their mission statement still included a desire to cure autism; something which has been heavily denounced by autistic people. 

However, perhaps none of those things have been more substantial than where the money that goes into the organization ends up. April has always been an important fundraising month for Autism Speaks, what with it being a month meant to support the individuals that their organization is meant to be supporting.  

Charity Navigator notes that the organization made $56 million in “Contributions, gifts, and grants” in 2018, with another 3 million coming in from Fundraising Events. The amount of money going into programs has trended downward in recent years; in 2014, it was 42 out of 57 million, or 73.7% of the organization’s funds. In 2018, it was 30 million out of just under 60 million, just 50%.

Even in 2016 and 2017, when revenue dipped to 47 and then 50 million, the amount of money for programs was higher than in 2018 when revenue shot up almost 10 million dollars. Despite the fact that Autism Speaks is meant to be a charity supporting autistic people and their families, that often doesn’t feel like what they’re actually doing. 

Many of the things the organization has continued to support, such as Applied Behavior Analysis or ABA therapy, are actively harmful to autistic people. Despite the fact they have made some changes for the better, including their removal of the word “cure” from their mission statement, the organization has still promoted incredibly harmful ideas. 

The fact that ABA remains legal and is now required to be covered by many insurances, for instance, is largely a result of lobbying by Autism Speaks. Despite the fact that the organization has been told over, and over and over about the harm of this “therapy” they continue to vocally push for it and support it. 

Why? Because Autism Speaks has never been an autism organization. It’s never been an organization for autistic people which is why so few autistic people have been in positions of any power within the organization. It is, as it was founded by, an organization for the relatives of autistic people. And for far too many of those people, the idea of a child behaving in a more neurotypical way is worth subjecting them to therapy that is virtually universally opposed as cruel and harmful by the autistic community.  

4 COMMENTS

  1. These “Autism advocates” are merely propagated by the media and say what their told to believe by their schools. Autism Speaks doesn’t even research a cure anyway. They only line their pockets. I don’t know how they became a scapegoat, but as much as I would like a cure they do nothing with their research.

  2. Thousands of children and adults with autism and other developmental disabilities are being DENIED ADEQUATE SUPPORT STAFF in hospitals due to illogical, unreasonable and unnecessary requirements to be vaccinated or show testing. The REALITY is many support staff that accompany people with autism and other disabilities DO NOT HAVE TIME to get a test that makes them WAIT 48 or 72 hours, okay? WAKE UP TO REALITY PEOPLE!!! People with autism depend on their support staff to protect and advocate for them in hospital settings that are notorious for neglecting and abusing vulnerable patients with autism and other special needs. Therefore it’s a matter of health and safety to ALLOW support staff in the hospital to protect and help them! While it’s perfectly understandable to require support staff wear masks, wash hands and adhere to infection control protocols, it is NOT reasonable or rational to prevent ANY support staff for vulnerable patients to not enter hospital given these patients very lives DEPEND on their support staff who know them and can aid hospital staff in helping and protecting these patients. Therefore, in the interest of public safety, in the interest of protecting our MOST VULNERABLE populations we must advocate that every state provide exemptions for home health SUPPORT STAFF that MUST accompany vulnerable patients with autism or down syndrome or any other developmental disability. ARE YOU AWARE that there are cases where hospitals have DENITED support staff entry to accompany an autistic patient and that patient was TOO MUCH for the hospital staff, and that patient ended up pulling off intubation tubes or jumping off the hospital bed or eating pillows or having seizures that went unnoticed by some RN’s in the hospital? Or how about vulnerable patients with special needs who are denied their support staff and end up having elevated behavioral issues in the hospital and then have to get unnecessarily physically or chemically restrained because they were DENIED their support staff? The need for support staff to accompany our most vulnerable patients in the community—patients who can suffer preventable harm without support staff— far outweighs the risk of covid in the community. Children and adults with special needs have been secretly HARMED and abused on hospital settings when their SUPPORT staff is denied entrance into hospitals due to irrational and unreasonable covid policies. Some support staff have testified they were denied entrance into hospitals to protect their home health patients because they were “unvaccinated’ yet support staff that were allowed in and were FULLY VACCINATED later got covid and were never tested or denied entrance. The solution is make an exemption for ANY SUPPORT STAFF to enter a hospital during this so called pandemic and be ExEMPT from any testing or vaccine requirement because the pervasive and critical need for support staff to PROTECT the health and safety of our most vulnerable citizens far exceeds the ever changing acute ambiguous guidelines for covid. So long as we don’t have support staff refusing to comply with masks and infection control as in washing hands coming into hospitals they should be ALLOWED to come in since we were told masks and hand washing and basic infection control will stop the spread. Any support staff that refuse to wear masks should be barred. Therefore, if the support staff for vulnerable patients adhere and agree to masks hand sanitation should be allowed to protect vulnerable patients. That’s fair, reasonable and rational. In short, the need to allow support staff for vulnerable patients with autism far exceeds the need to show a vaccine card or testing given people who are fully vaccinated are still getting and spreading covid .

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