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In 2004 Autism Speaks, one of the world’s largest autism charities, initiated the Light It Up Blue campaign for Autism Awareness Month in April, now known as Autism Acceptance Month. However, many autistic people feel alienated by this and are critical of Autism Speaks for more than one reason. I believe it’s important to outline these criticisms and encourage people not to support this organisation and even to point out these problems to others.
Autistic Heroes aligns with the neurodivergent movement, which celebrates neurological differences and points out the value of autistic voices in campaigns. Whereas Autism Speaks has portrayed autism as the problem, deals with its symptoms and has historically supported research into finding a cure, all of which can be harmful to autistic individuals.
It’s vital to recognise the disconnect between the way Autism Speaks portrays autism and the lived experience of many autistic individuals, especially late-diagnosed adults. It’s crucial to advocate for a positive, affirming view of autism in line with the neurodiversity movement as a step towards developing genuine acceptance.
The Masking Mandate: ABA Therapy and Its Implications
One aspect of Autism Speaks’ work is promoting Applied Behavioural Analysis (ABA), especially to the parents of autistic children. This is an evidence-based therapy used to develop important life skills. However, ABA works to modify autistic behaviour to be “more appropriate” by conforming to neurotypical social norms.
Stifling innate tendencies in this way is a sure way to produce autistic people who mask a lot. Masking is deliberately acting in neurotypical ways to fit in with society. It uses up energy to the extent that it can lead to mental health issues and autistic burnout.
While some ABA practitioners have sought to update their approach, there remain some valid concerns that overall ABA prioritises conformity over authentic expression and individuality. This can hinder self-acceptance and tends to limit autistic individuals’ autonomy in making lifestyle choices and appreciating their positive autistic traits.
The Cure Narrative: Autism as a Disease to Eradicate
Only in 2016 did Autism Speaks remove “curing autism” as a goal from its mission statement, along with words like “struggle”, “hardship”, and “crisis”. In an early advert, it had even portrayed autism as an evil force that would ruin your life, inspiring families to stand against it.
This sort of language that sees autism as a problem to be fixed or a disease that needs eradication does not promote autism acceptance. Instead, it adds to stigmatisation, perpetuating the deficit model and reinforcing the stereotype of autistic individuals as burdens to society.
Alternatively, the neurodiversity paradigm promotes acceptance and inclusion by seeing autism as a natural variation in human diversity. This affirming approach recognises that autistic individuals have a range of strengths alongside their challenges, values their unique insights and acknowledges their ability to contribute positively to society.
Representation Matters: The Absence of Autistic Voices
Autism Speaks has always been criticised for the lack of autistic individuals in its leadership. The latest information I can find indicates that although it has sought to address autistic representation, it still may have only one autistic director out of 28 on its board.
The danger with this approach is that Autism Speaks is making decisions without fully grasping the unique experiences and challenges of autistic individuals. This leads to inaccurate assumptions, resulting in harmful effects on the autistic community. Greater autistic representation would lead to Autism Speaks recognising these negative effects, promoting a more positive view of autism, and developing projects that align more closely with the desires of autistic people.
Global Influence: The Reach of Autism Speaks Beyond the U.S.
While Autism Speaks is a charity based in the US, it collaborates internationally, runs events, and funds projects and initiatives outside the US. For example, here in the UK, Autism Speaks UK, founded in 2004 and rebranded as Autistica in 2009, focuses on research into autism.
Autism Speaks’ awareness campaigns, advocacy and research have been criticised as negatively influencing UK public opinion and the government’s policies by promoting harmful stereotypes. However, the research conducted by Autistica on a range of issues appears more neurodiversity-friendly and may have had a more positive influence.
There are differences in how autism is experienced and perceived worldwide, but the views that Autism Speaks has propagated are very pervasive. Alternative approaches like the neurodiversity paradigm and the lived experiences of autistic adults need to be considered as we evaluate and challenge these perceptions.
The Political Entanglement: Autism Speaks and Controversial Alliances
President Trump, a long-standing supporter of Autism Speaks, has implied that he thinks vaccines might cause autism, a theory based on a debunked 1998 study. Autism Speaks denies this link, although historically it has suggested that vaccines might sometimes trigger autism symptoms – a statement it retracted in 2015.
Nevertheless, Trump has now tasked his health secretary, Robert Kennedy, with commissioning research into identifying the environmental cause for rising autism rates, a research area that Autism Speaks supports, even though such action legitimises harmful myths about autism and may divert resources from other beneficial research.
Portraying rising autism as problematic is detrimental to autistic individuals and lacks understanding. The scientific consensus is that autism is not a disease; the increased prevalence is due to improvements in diagnosis, not environmental factors, and views are slowly shifting towards seeing autism as a natural human variation. Autism Speaks may be beginning to acknowledge some of this.
What You Can Do Instead of Supporting Autism Speaks
It is vital to evaluate organisations like Autism Speaks and understand the harm that some of their work has done to the autistic community. This will help us to grasp what to look for in initiatives to check if they are genuinely helping the cause of autistic people. The extent to which an organisation embraces neurodiversity is an important key. This goes hand-in-hand with valuing authentic autistic voices and experiences. Negative misconceptions of autism need to be challenged, and acceptance and inclusion promoted. Please join the conversation by sharing your thoughts about Autism Speaks and its impact on the autistic community.