Introduction
Founded in 2005, Autism Speaks emerged as a beacon for advocacy in the autism community. Despite its initial mission to support individuals with autism and their families, the organization has encountered significant backlash from those it aims to represent.
A poignant example of the organization's controversial stance was its silence following the 2014 knife attack on an autistic teenager in Saint Mary's County, Maryland. The assailants received minimal sentences, and Autism Speaks' lack of condemnation was deafening, raising debates on its influence on public perception and its unintentional endorsement of the alarmist portrayal of autistic individuals in the media. With a growing call for support to be redirected towards organizations led by autistic individuals, such as the Autistic Self-Advocacy Network and the Autistic Women and Nonbinary Network, the future of autism advocacy is at a crossroads, with the hope that a shift towards empowering those with autism will prevail.
The History and Mission of Autism Speaks
Founded in 2005, Autism Speaks emerged as a beacon for advocacy in the autism community. Despite its initial mission to support individuals with autism and their families, the organization has encountered significant backlash from those it aims to represent.
A poignant example of the organization's controversial stance was its silence following the 2014 knife attack on an autistic teenager in Saint Mary’s County, Maryland. The assailants received minimal sentences, and Autism Speaks' lack of condemnation was deafening, raising debates on its influence on public perception and its unintentional endorsement of the alarmist portrayal of autistic individuals in the media.
Autism Speaks, once an advocate for finding a cure for autism, has more recently been involved in developing prenatal testing, drawing parallels to eugenics and raising ethical concerns. The organization's media representation, such as the film 'Autism Every Day,' has been criticized for its negative portrayal of autism, including a parent's disturbing admission of harmful thoughts towards her autistic child.
Additionally, the release of the 'I Am Autism' film in 2009, which personified autism as a life-stealing force, further alienated those with autism and their advocates. Criticism also extends to Autism Speaks' allocation of funds, with a small fraction reportedly going towards direct services for families. The organization's powerful financial and political influence has been scrutinized, especially following the Citizens United v. FEC decision, which has been suggested to increase their sway in political circles. With a growing call for support to be redirected towards organizations led by autistic individuals, such as the Autistic Self-Advocacy Network and the Autistic Women and Nonbinary Network, the future of autism advocacy is at a crossroads, with the hope that a shift towards empowering those with autism will prevail.
Focus on Curing Rather Than Acceptance
Autism Speaks' approach, historically centered on seeking a cure for autism, has sparked a significant debate within the community. Critics argue that this perspective implies autism is a deficiency needing correction, which can be detrimental to the self-worth and recognition of autistic individuals' abilities.
The organization's stance has evolved, but it has not been without controversy, particularly regarding their efforts to develop a prenatal test for autism, raising ethical concerns reminiscent of eugenics. Furthermore, Autism Speaks has been embroiled in controversy for not denouncing violent acts against autistic individuals nor the alarmist portrayal of such crimes in the media.
This was highlighted when, in 2014, a teenage boy with autism in Maryland was attacked by classmates, and Autism Speaks remained silent on the issue. This silence extends to the spread of misinformation, such as claims by figures like Pastor Greg Locke, linking autism to spiritual deficits.
These narratives can exacerbate the stigma and misunderstanding surrounding autism, leading to a push for recognizing autistic individuals as a distinct minority group to ensure better protection and support. Moreover, the rise in autism diagnoses has been labeled an 'epidemic' in the U.S., yet this term is misleading. The increase is likely due to changes in diagnostic criteria rather than a genuine uptick in autism cases. Research suggests that the prevalence of autism could be as high as 1-3% globally, with diagnoses of associated conditions like ADHD also surging. These statistics underscore the importance of a nuanced understanding of autism and the dissemination of accurate information to avoid perpetuating harmful stereotypes and biases.
Impact on Autistic People's Self-Esteem
The portrayal of autism as a burden by Autism Speaks has been met with criticism for its potential to instill feelings of shame and negative self-perception among autistic individuals. Adolescence is a critical time for identity development, and the integration of an autism diagnosis into one's self-concept can prove challenging.
Some adolescents may come to accept their autistic identity, while others may wish for normalcy, feeling they have "a bad brain" (Humphrey & Lewis). The sense of isolation that can result from this struggle is not unfounded.
Research indicates that one in three autistic adults experience social isolation, with adults often finding it difficult to access resources aimed at supporting them (Leigh). Communication barriers further exacerbate this loneliness, as seen in the experiences of Chris, who feels excluded due to his direct manner of speaking.
Recent studies challenge the assumption that nonspeaking autistic individuals lack literacy skills. A study led by Vikram Jaswal found that many nonspeaking autistic teens and adults possess foundational literacy skills, with five times more individuals showing knowledge of written language than expected.
This revelation underscores the importance of recognizing and nurturing the competencies of autistic individuals. Controversies regarding Autism Speaks extend to its silence on alarmist news coverage of violence involving autistic individuals. A notable case occurred in Saint Mary’s County, Maryland, where an autistic teenager survived a brutal knife attack. The organization's lack of condemnation of the attack and the light sentences for the perpetrators sparked debates about the impact of Autism Speaks' messaging on public perception and the exploration of unscientific alternative treatments for autism (Pastor Greg Locke). Understanding the factors contributing to poor mental health and quality of life is crucial for improving the well-being of all autistic people, especially considering the intersection of autism with other minority identities. This encompasses the need for specialized support for autistic people experiencing alexithymia and the unique stresses faced by those with multiple minority identities, such as being both autistic and part of the sexual minority (Egger's test, research on social competence and anxiety).
The Role of Language in Shaping Public Perception
The language and portrayal of autism by organizations like Autism Speaks have profound effects on public perception and the lived experiences of autistic individuals. Historically, Autism Speaks has been criticized for its language describing autism as a crisis or epidemic, which can perpetuate stigmatization.
Their media representations, including the film 'Autism Every Day' and the short film 'I Am Autism,' have been met with backlash for their negative depictions. These portrayals contribute to a narrative that views autism as a burden, rather than recognizing the diverse experiences of autistic people.
Such messaging has real-world repercussions. In 2014, a harrowing incident occurred in Saint Mary's County, Maryland, where an autistic teenager was attacked by his classmates.
Despite the severity of the crime, the attackers received light sentences, and Autism Speaks did not publicly condemn the attack. This inaction fuels debates about the organization's impact on societal attitudes towards autism.
Meanwhile, some parents, influenced by alarming messages, turn to unproven alternative treatments for their autistic children. Autism Speaks' approach has had tangible consequences, with a rising number of undiagnosed autistic adults, particularly among the over 50s. Researchers estimate about 1.2 million autistic people in England alone, suggesting a significant underdiagnosis. Moreover, one-third of autistic individuals are non speaking, and many have untapped potential in literacy, as highlighted by recent studies, challenging the misconception that nonspeaking equates to a lack of understanding. To move towards acceptance and inclusion, it's essential to shift the narrative around autism. Recognizing the full humanity and capabilities of autistic individuals, and embracing language that respects their diversity, is a crucial step in this direction.
The Importance of Autistic Voices
The voices of autistic individuals are not just valuable but essential in shaping the narrative and policies around autism. Take the inspiring example of Dan Harris, a father from Peterborough, who advocated for the use of technology to empower non-speaking autistic individuals like his son.
Harris's campaign led to the installation of 100 picture boards in his community, facilitating communication and understanding. It's a poignant reminder that every child deserves a full and productive education, irrespective of their needs.
Similarly, Jordyn Zimmerman's life was transformed by a communication app, which gave her a voice after years of silence. Her story illustrates the profound impact technology can have, allowing individuals to express their true selves and connect with others.
The landscape of autism understanding is evolving rapidly. Prof Sir Baron-Cohen of the Autism Research Center highlighted the diverse strengths of autistic individuals, such as attention to detail and pattern recognition.
These strengths, along with a 700% rise in autism diagnoses over the past 20 years, underscore the importance of rethinking how we support the autistic community. The recent findings from the Centers for Disease Control and Prevention, estimating 1 in 36 eight-year-olds in the US are autistic, further emphasize the need for inclusive and informed support systems.
Recognition of autism, particularly among girls and women, often comes too late, leading to unnecessary struggles and crises. It's crucial to acknowledge the individuality of each autistic person and provide tailored support. As one individual put it, their autism is visible and poses significant daily challenges, yet this is only a part of their story. Their fluctuating ability to speak doesn't define their entire experience with autism. This personal account, along with the call for more equitable research and services, highlights the diversity within the autism spectrum and the need for a personalized approach to support. Understanding the lived experiences of autistic individuals leads to more compassionate, effective, and respectful policies that truly address their needs and aspirations.
The Need for Inclusive and Accepting Language
The language we use in autism advocacy has a profound impact on the autistic community. Embracing person-first language, which places the individual before the diagnosis, aligns with the principles of dignity and neurodiversity, celebrating the unique attributes of those on the spectrum. This approach is not merely about terminology but about respecting the autonomy and personhood of autistic individuals.
Recent studies underscore the importance of including autistic voices in research and advocacy. Findings reveal that nonspeaking autistic individuals often possess foundational literacy skills, challenging the misguided assumption that nonspeaking equates to a lack of understanding (Jaswal et al., Autism, 2021). Such revelations are critical in shaping inclusive language that reflects the capabilities of autistic individuals.
Moreover, the autistic community's preference for language that accurately represents their experiences is gaining recognition. For instance, the Autism Society of America has shifted towards the term 'acceptance' rather than 'awareness,' reflecting a deeper understanding of autism as a part of human diversity worthy of respect, not fear (Musheno, 2021). This movement towards inclusive language is echoed by autistic scholars and advocates who emphasize the importance of self-identification.
Whether an individual identifies as 'a person with autism' or 'an autistic person,' it is their choice, and it is crucial for educational institutions to create safe, inclusive spaces where all can share their experiences and skills (Gross, 2021). The shift in language is a step toward dismantling ableist frameworks that have historically influenced autism research and interpretations, as noted by researchers across various institutions (Lynch School of Education and Human Development et al., 2021). By prioritizing language that celebrates neurodiversity and the strengths of autistic individuals, we move closer to a society that not only accepts but values the contributions of everyone within the autism spectrum.
Conclusion
In conclusion, the controversies surrounding Autism Speaks have highlighted the need for a shift in autism advocacy towards empowering autistic individuals. The organization's historical focus on finding a cure and its negative portrayal of autism have been met with criticism for perpetuating stigma and undermining the self-esteem of autistic individuals.
Additionally, Autism Speaks' silence on acts of violence against autistic individuals has raised concerns about its influence on public perception and support for alternative treatments. The importance of inclusive language and accurate representation cannot be overstated.
Language that respects the diversity and capabilities of autistic individuals is crucial in shaping public perception and fostering acceptance. Recognizing the voices of autistic individuals as essential in shaping policies and narratives is vital to ensure their needs are met.
The landscape of autism understanding is evolving rapidly, with a growing recognition of the strengths and potential within the autistic community. Embracing person-first language, respecting autonomy, and celebrating neurodiversity are key principles that support inclusivity and respect for all individuals on the spectrum. By shifting towards empowering autistic individuals and embracing language that reflects their experiences, we can create a society that values their contributions and provides tailored support to ensure their well-being. It is through this approach that we can truly advocate for and empower those with autism.
