Today, we’re talking about Autism Speaks and its problems and controversies.
In 2005, Bob and Suzanne Wright founded the largest autism research organization, Autism Speaks. On the surface, Autism Speaks appears to be a worthwhile organization. However, it’s received a lot of criticism throughout the years and is even considered a hate group by many autistic adults.
If you didn’t know better, it’s easy to dismiss such criticism as extreme. But once you take the time to listen, it’s easier to understand the why. Let’s hear from autistic advocate, Grace Dannemiller, who shares her perspective on the problems with Autism Speaks.
Content Warning
This post contains emotionally challenging content related to mental health, ableism, euthanasia, shock treatment, and ending one’s life.
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Mission Statement
Let’s briefly take a look at the Autism Speaks mission statement.
Autism Speaks is dedicated to creating an inclusive world for all individuals with autism throughout their lifespan. We do this through advocacy, services, supports, research and innovation, and advances in care for autistic individuals and their families.
Sounds good, right? What could be the problem?
Proud to Be Autistic
The truth is, I am still winning, and you are scared. And you should be. I am autism. You ignored me. That was a mistake
Produced by the most mainstream autism advocacy organization, this is a quote from the infamous “I am Autism” commercial.
Neglecting Autistic People
Autism Speaks has a long history of disrespecting and speaking over the voices it claims to uphold.
According to its own 2022 report, Autism Speaks, the largest autism research group, raised $48 million dollars.
At the surface level, raising $48 million dollars for the autism community sounds great.
However, they don’t advertise that, according to the Autistic Self Advocacy Network, only 1% of the money goes towards family services for autistic individuals.
In other words, they completely neglect the most crucial needs within the community.
What’s Wrong with the Autism Puzzle Piece
Autism Speaks‘ chosen symbol of autism is the blue puzzle piece. Unfortunately, the most widely known logo is the puzzle piece. Why is the autism puzzle piece a problem?
It’s a flawed symbol of autism that a vast majority of the autism community has grown uncomfortable with. Let me tell you why.
There are two main takes on the meaning of the puzzle piece symbol.
1. “The Missing Piece” Perspective
The first lens says that autistic people have a “piece” missing.
That missing piece? A cure.
The premise? Without a cure, autistic people will be unable to “fit” into society or live successful lives.
Rather than learning about the needs of autistic people from members of the autistic community, non-autistic people are leading the charge to eradicate autistic people.
Does this sound humane?
2. “Problem to Solve” Perspective
The second perspective is that the puzzle piece represents how autism is “puzzling.”
In other words, autism is nothing but a medical condition or problem that needs to be solved.
Wouldn’t it make more sense to focus on better interventions to support the needs of individuals in the here and now?
Autistic people are not meant to be neurotypical people.
Ignoring the Needs of the Autistic Community
This leads back to the main issue I have with Autism Speaks.
Their goal is primarily to find a “cure” for autism rather than doing anything to support the autistic community now.
Rather than addressing:
- Systemic discrimination
- Poorly funded special education programs
- Continued education for the general public which is highly ignorant about autism.
Real autistic lives that already exist must be addressed by “advocates” before funding further research for a cure.
Autism is Not a Disease- Ethan Lisi
If you put your Xbox game in to a Playstation, it won’t work because the Playstation communicates differently.
Ethan Lisi
Lifting autistic voices. Learn from autistic teens.
Support the Infinity Symbol for Autism
Recently, autistic people have pushed the use of the rainbow or red infinity as the new symbol of autism.
The reason behind these symbols is that emphasize autism as a spectrum or non-linear disorder.
What is Autism?
Although autism can be an invisible disability, it is no less prevalent in everyday life.
Autism is complex, as our brains experience the world around us differently.
With that being said, Autism isn’t a sickness or disease that needs to be cured in order to have a healthy and successful life.
Unfortunately, parents of autistic children often only learn about autism from those who look down on autism. Imagine the impact if more parents learned about autism from Autistic adults themselves.
Othering Autistic People
Trigger Warning: Discussion of Suicide
Unfortunately, Autism Speaks has been a long-term supporter and funder of that mindset.
The tone of their commercial alone is enough to damage the mindset of autistic people and their families.
Autism Speaks aims to instill fear to raise money while disregarding the effects on real autistic people.
For many reasons, the current life expectancy of autistic people is only 40 years old. Tragically, this is in part due to an extremely high suicide rate and other mental health issues.
Acceptance of Autistic People
Supporting autistic people begins by listening to autistic people. Reframing Autism, an autistic-led advocacy group is a valuable resource for educators, therapists, and parents of autistic children.
They offer concrete tools to support the well-being of autistic children and young adults long term. Check out their Resources Section for letters to teachers and more.
Systemic Inequality & Exclusion
A major contributing factor to the tragic rates of suicide is systemic inequality, everyday prejudices, and mistreatment.
Most of this is done by the ignorance of society fueled by “othering” autistic people.
An example of extreme inequality in the United States is forced sterilization (the unconsented removal of the ability to produce offspring) of autistic and other disabled people.
This is still legal in 31 states and Washington D.C. with 17 states allowing the procedure to be done on children according to bioedge.org.
According to ohchr.org, other cases of attempting to cure autism are represented in the long-seen prevalence of:
- electric shock therapy,
- attempted euthanasia,
- overprescribed psychotropic medications,
- and other torturous methods of abusing medicine.
Not every case of discrimination is as visible.
A good portion of the mistreatment we autistic people face is at the hands of others. Whether intentional or not, ignorance is no longer an excuse.
Celebrate Autism Acceptance Month
To educate the public, autistic people have been pushing a change in language from “autism awareness month” to autism acceptance month”.
This acknowledges the growing need for more acceptance within the community.
The use of words like “acceptance” focus on the need for improved support. Specifically, more inclusive opportunities in:
- education,
- employment,
- accessible housing,
- affordable health care,
- and long-term services for autistic adults.
In the end, more education about autism isn’t enough.
Inclusion and Accessibility
Inclusion of autistic people, and not just recognition, is necessary to receive real support. Further, inclusion leads to the ultimate goal of accessibility.
It’s crucial to lift autistic voices.
We must be heard and represented, unruffled by ignorance and hurtful lobbying prompted by organizations like Autism Speaks.
To promote true understanding, the spotlight should focus on autistic people directly.
Autistic people deserve the dignity of being heard. We must be allowed to advocate for concrete progress toward equal rights and resources for people with disabilities.
Learn from Autistic-led Groups
For Autism Acceptance Month and throughout the year, I urge you to move away from Autism Speaks.
Instead, show your support and learn from autism organizations led by autistic people themselves. Some autistic-lead advocacy organizations are:
- Autistic Self-Advocacy Network (ASAN),
- Autistics for Autistics (A4A),
- Autistic Inclusive Meets (AIM),
- Reframing Autism
- Autistic community-based and supported organizations.
My Own Autism Acceptance
As an autistic person, sometimes even I agree it may be easier to be “normal”.
The first 15 years of my life I spend longing to be like everyone else. Having normal friendships, and normal feelings was my dream for so long.
It took years for me to find the right people and support so that I could finally accept myself. Even more, the welcoming community I’m now a part of.
Finally, I have that acceptance and now I proudly say,
I’m autistic, and am no longer afraid, no thanks to Autism Speaks.
Grace
Guest Author Bio
Grace Dannemiller is an autistic teen who attends Hoover High School in North Canton, Ohio. She’s currently working as the Copy Editor for the Vikings Views Newspaper.
Recap: Autism Speaks Problems
Thank you, wise Grace, for your insight into the Autism Speaks problems impacting the autistic community. We appreciate your bravery and willingness to share your perspective.
So, Friend, I sure hope Grace’s piece will inspire you to learn more about autism from autistic people themselves.
One person at a time, we can do our part to create a safe and inclusive world for all of our children.
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