Autism Speaks

Passions fuel the soul!

I mentioned in my last post that Autism Speaks loves mouse-model studies. Another focus of its research is in trying to discover what causes the “restricted” interests that autistic people “suffer” from. Like this one: Behavioural and Neural Correlates of Reward Motivation in Children with Autism Spectrum Disorders. That title alone is enough to give me hives.

Instead of this being something that’s pathologized, why isn’t it something that’s celebrated? These so-called “restricted” interests bring joy to the lives of autistic people. They can also leverage them to help with their studies and employment as well as with skills acquisition. I love reading autistic people talking about the things they find excellent and awesome:

Ibby Grace: Why Do So Many Autistic People Love Trains?

Alyssa, chatting about math and purple and geometric patterns and nanotech

and The Obsessive Joy of Autism from Just Stimming

And I love reading about parents who find their autistic kids’ interests excellent and awesome, like logos.

You can read about the things my kids love here.

Autism Speaks

Image description: Decorative background with the following text – did you know? When Autistic people have special interests or passions, they are often labeled as obsessions. Passions fuel the Soul. Special interests which do not cause harm, should be encouraged. Not thwarted.

Picture credit.

Light It Up True is a campaign running in April to counter the misinformation and outright lies spread by Autism Speaks. We will be sharing some truths about both autism and the largest so-called ‘autism charity’ in the United States.

This campaign is part of a larger one called Boycott Autism Speaks. Please go to boycottautismspeaks.com to find out more.

Did you know? Stimming is an adaptive behavior which can help and autistic person focus, cope, engage, etc. Asking an autistic person not to stim can be more distracting than the stim itself

Stimming is an adaptive behaviour that performs a positive function

Autism Speaks loves funding mouse-model studies like this one which looks into the possible causes for repetitive behaviours. I’m a fan of science but I can’t help thinking about all the communication devices for non-speaking autistic people that $120,000 could have purchased.

In the resources section of the Autism Speaks website you’ll find countless practitioners who will work with you to reduce or eliminate those pesky “inappropriate” behaviours.

What many autistic people have been telling us for years is that these behaviours perform a positive function and that the only people who seem to find them problematic are non-autistic people – because it makes them feel uncomfortable.

These are two of my favourite posts on stimming:

Quiet Hands from Just Stimming

Socially Inappropriate from Musings of an Aspie

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Image description: A line drawing of hands flapping is shown on a purple background together with the following text – did you know? Stimming – Usually NOT harmful. The repetitive movement of the body or voice. May express joy, anxiety, boredom, frustration. Can be fun, relaxing, soothing. Not necessarily an indication that a person unable/unwilling to attend to socialization, learning, etc.

Picture credit.

Light It Up True is a campaign running in April to counter the misinformation and outright lies spread by Autism Speaks. We will be sharing some truths about both autism and the largest so-called ‘autism charity’ in the United States.

This campaign is part of a larger one called Boycott Autism Speaks. Please go to boycottautismspeaks.com to find out more.

Boycott Autism Speaks

What does Autism Speaks spend your money on?

The folks at Boycott Autism Speaks pulled together some information from the organization’s 2012 Financial Reports. Here’s what they found:

  • 36% = Salaries, benefits, payroll taxes: $22, 861,019
  • ​25% = Science grants/awards: $15,790,797
  • 5% = Travel, meals, lodging, entertainment, catering: $3,034,109
  • 4% = Advertising & Marketing: $2,827,316
  • 3% = Family Services grants & awards: $2,048,552

(Percentages are based on the total reported expenditures of $64,127,886)

If you’re donating to Autism Speaks because you think the money is going to help autistic people and their families, I’m sorry to inform you that only 3 cents from every dollar you donate is actually doing that.

Autism Speaks

 

Image description: Picture is of two caterers plating food for a function. There is a large table covered in white plates with food on them. One of the caterers is adding sauce to the plates. Text on the image reads: If you want more of your donations spent on travel, lodging, entertainment and catering than on autistic people…. Autism Speaks is the charity for you!

Picture credit.

Light It Up True is a campaign running in April to counter the misinformation and outright lies spread by Autism Speaks. We will be sharing some truths about both autism and the largest so-called ‘autism charity’ in the United States.

This campaign is part of a larger one called Boycott Autism Speaks. Please go to boycottautismspeaks.com to find out more.

Boycott Autism Speaks

The truth is out there, Autism Speaks – autistic adults exist!

As Suzanne Wright recently reminded us, for Autism Speaks, autism is something that only affects children and their families. Autistic children are ‘missing’, ‘gravely ill’, ‘stolen’.

As a friend recently wrote:

On the entire [Autism Speaks] “Autism Acceptance” page, here are all the phrases that refer to autistic people:

– Mother with Two Sons on the Autism Spectrum
– one of her sons, Rubin, who is on the autism spectrum
– her son Max who has autism
– Youth with Autism
– young adults with autism
– individuals affected by autism
– individuals with autism spectrum disorder (ASD)
– children with autism
– students with an autism spectrum disorder (ASD)
– children with autism…children with autism [twice in same paragraph]

The unwavering message of Autism Speaks is that there is no such thing as an autistic person—that there are only normal children who have been diseased with autism. They reject the fact that autism is an integral part of autistic people’s existence, that autistic people are autistic.

These missing, stolen, broken children tragically never attain adulthood.

Wait… Oh that’s right, they do!

Autism Speaks

Image description: picture of a wooded park. In the foreground there is a small lake with a bench above it. Above the lake and the bench, a path runs up a small hill. A beam of light falls onto the path. The picture is labeled with text which reads: “The truth is out there…. autistic adults exist!”

Picture credit.

Autism Speaks can’t of course acknowledge that autistic adults are out there because it would contradict the organization’s central message. But autistic adults are out there, going to college, getting married, having children and living happy and productive lives. And guess what? They have amazing things to share with us if we take the time to listen.

Like Amy Sequenzia, whose collected writings, both prose and poetry, you can find on her site Non-Speaking Autistic Speaking.

Or how about Mark Utter, whose film ‘I Am In Here’ I recently heard about from  Ibby Grace.

And how about that Ibby Grace, wife, mother and professor? She was just in Michigan giving a presentation called ‘Autistic Activism in an Age of the Blues’

She’s also one of the people responsible for the blog, We Are Like Your Child, where autistic adults share insights in an effort to help non-autistic parents better understand their autistic children.

Our kids aren’t missing or gravely ill. They most definitely do need supports and accommodations in order to fulfil their potential – but that’s something Autism Speaks doesn’t have a vested interest in giving them.

Autism Speaks’ awareness campaigns harm autistic people

Trigger warning: this post contains images of eugenics posters from the early 20th century, juxtaposed with Autism Speaks’ 21st Century messaging.

I anticipate this may ruffle a few feathers. I’m ok with that but before you sharpen your pitch fork I recommend that you stop, breathe and re-read. Give it a try, it can’t hurt.

Autism Speaks

Image description: Picture is of four “awareness campaigns” accompanied by the text, “This is what ‘awareness’ campaigns look like”. Clockwise, from the top left:

  • Black and white poster from 1924 titled ‘Four types of mental deficiency’. Four black and white pictures of people are on the poster, labeled ‘Idiocy’, ‘Mongolian Imbecility’, ‘Imbecility’ and ‘Moron (high grade feeble minded)’. The caption at the bottom of the poster says:

The feeble-minded can be divided into three groups. (1) Idiots with a mental age less than three years; (2) Imbeciles with a mental age between three and seven years; (3) Morons with a mental age of between seven and eleven years. The moron group has been largely neglected in Canada and has contributed greatly to criminality, vice and pauperism.

– The Canadian National Committee for Mental Hygiene conducts activities to secure better provision for the control of feeblemindedness. Source.

– Autism now affects 1 in 68 children and 1 in 42 boys
– Autism is the fastest-growing serious developmental disability in the U.S.
– Autism costs a family $60,000 a year on average
– There is no medical detection or cure for autism

  • Red and gold poster from the London Eugenics Society shows a stylized farmer scattering seed from a basket with the slogan, “Only Healthy Seed Must Be Sown!” Source
  • American eugenics poster from about 1926 has the central slogan, “Some people are born to be a burden to the rest”. Under the slogan is a card with a picture of Uncle Sam, the title ‘Fitter Families Contest’ and some unintelligible text. Surrounding the slogan are three cards with light bulbs in the centre of each. Clockwise from the top these cards read:

– This light flashes every 15 seconds. Every 15 seconds $100 of your money goes for the care of persons with bad heredity such as the insane, feeble minded, criminals & other defectives

– This light flashes every 7.5 minutes. Every 7.5 minutes is born in the United States will [sic] will have ability to do creative work & be fit for leadership. About 4% of all Americans come within this class.

– This light flashes every 16 seconds. Every 16 seconds a person is born in the United States. Source.

They may use different language but the messaging is, in essence, the same: to raise awareness of the extent of a growing ‘problem’; a public health crisis facing us all. To outline how prevalent that problem is and what a huge financial burden it represents. Autistic people are sick and tired of being the subject of these sorts of ‘awareness’ campaigns and want it to just stop already – here’s some posts on this issue if you want to read more:

Chavisory: A Call for Accountability – this is a MUST READ regarding this issue. I can’t pick just one thing to quote – the whole post needs to be read.

Renee Salas, writing for the Golden Hat Foundation – Awareness to Acceptance: It’s a Process

Kassiane, writing for ASAN in 2012: Acceptance vs. Awareness 

Let’s ditch the awareness campaigns with their stigma, fear and eugenicist messaging. They have a hugely negative impact on autistics and they don’t seem to do *anything* to help autistic people and their families get the support, services and accommodations they genuinely need.

Light It Up True is a campaign running in April to counter the misinformation and outright lies spread by Autism Speaks. We will be sharing some truths about both autism and the largest so-called ‘autism charity’ in the United States.

This campaign is part of a larger one called Boycott Autism Speaks. Please go to boycottautismspeaks.com to find out more.

 

Boycott Autism Speaks

Autism Speaks refuses to listen to autistic people

Autism Speaks has ZERO autistic people on its board or in any leadership, executive or advisory role. In addition, not only does it refuse to listen to autistics, it actively seeks to silence them.

Hardly surprising given that part of Autism Speaks’ goal is to eradicate autism. It turns out that when you listen to them, autistic people don’t in fact want to be eradicated.

It all got too much for John Elder Robison, who resigned his roles at Autism Speaks in November, 2013.

Many, many autistics have written about how problematic this is. There are more posts on this than you can shake a stick at in fact, but here’s just a few:

Autistic Hoya: Autism Speaks and Representation

Radical Neurodivergence Speaking:  Autism Speaks: Shut Up and Listen  (Autism Speaks quotes Neurodivergent K in its transition kit, incorrectly, out of context and without her permission and refused to do anything about it for years)

Judy Endow:  J. Cole Writes Apology Letter to Autism Speaks

Yes, That Too: Erased, Silenced, Derailed

Autism Speaks

Image description: Picture shows the patio of a lakeside restaurant in London’s High Park. In the foreground are many white tables and chairs, all empty. Text reads: All the autistics on the Autism Speaks Board get together for lunch with the autistics in a leadership, executive or advisory role at Autism Speaks.

Picture credit.

Light It Up True is a campaign running in April to counter the misinformation and outright lies spread by Autism Speaks. We will be sharing some truths about both autism and the largest so-called ‘autism charity’ in the United States.

This campaign is part of a larger one called Boycott Autism Speaks. Please go to boycottautismspeaks.com to find out more.

autism speaks

Autism Speaks – about that 1 in 68 statistic…

Autism Speaks uses tactics that promote a fear of autism in order to scare people into donating to their organization. Unsurprisingly, they have pounced on the latest CDC prevalence data to promote their agenda – that autism is a public health crisis.

On their blog they have a guest post from none other than Dr. Bob Sears, a man responsible for spreading misinformation about vaccines endangering his patients and more. One of Dr. Sears’ patients was found to be the cause of a 2008 measles outbreak in San Diego. Dr Sears, in line with Autism Speaks’ fear-based message, suggests that autism is increasing at a tremendous rate:

as a full-time practicing pediatrician, I’m having the “I’m worried your toddler may have autism” talk with parents almost every week now. It used to be a few times each year, when I started practicing back in 1998.

Let’s see what the CDC has to say about their figures:

I would just like to add that we recognize now that autism is a spectrum, so I think in the past we thought of children as being severely affected, meaning children with intellectual disability, children who were nonverbal, children with a host of co-occurring conditions, that was the picture of autism, I think, about ten years ago. Our understanding has evolved to the point that we understand now that there are children with higher IQs and children who perhaps are even not receiving special education services. So our understanding of autism has changed over time, and I think that our numbers may be reflective of some of that, as well.

Please note – I can’t speak for the CDC’s Dr. Marshalyn Yeargin-Allsopp regarding the above quote but I assume she did not intend to imply that all “severely affected” autistic children are intellectually disabled.

Autism is a developmental disability that has always been here and it’s nothing to be afraid of.

Let’s #lightituptrue this April and #boycottautismspeaks

Boycott Autism Speaks

Image description: Picture is a meme showing Inigo Montoya, a character from the movie The Princess Bride. Text reads: You keep saying 1 in 68. I do not think that stat means what you think it means.

Thanks to Gingerheaddad for letting us use his meme.

Light It Up True is a campaign running in April to counter the misinformation and outright lies spread by Autism Speaks. We will be sharing some truths about both autism and the largest so-called ‘autism charity’ in the United States.

This campaign is part of a larger one called Boycott Autism Speaks. Please go to boycottautismspeaks.com to find out more.