Voices of Autism: Who Should be Our Spokespersons in Society?

The topic of autism advocacy often brings about heated debates. When it comes to speaking for those on the autism spectrum, there's a growing consensus that the individuals themselves should be the ones to do so. In reality, many non-autistic individuals and organizations often dominate the conversation, leaving little room for autistic voices to be heard. This article delves into the challenges faced by autistic individuals who strive to advocate for themselves and the systemic issues that hinder their representation.

The Myth of 'Real' Autism Advocates

There are numerous voices claiming to speak for autistic people, but their legitimacy is questioned unless they are autistic individuals themselves. While non-autistic individuals and professionals might have good intentions, they often lack the lived experience necessary to truly understand and advocate for the autism community. This disparity is evident in the kind of representations that dominate mainstream autism advocacy.

Mainstream Autism Advocacy: Inside and Out

Mainstream autism advocacy frequently relies on the voices of neurotypical 'professionals,' who have little to no personal experience of being autistic. They often consulted with non-autistic individuals rather than directly engaging with autistic individuals. Similarly, 'autism parents' are another group that often dominates the conversation, but they too lack the lived experience of autism. However, it's important to note that this is not the case with all parents of autistic children. Many parents are genuinely committed to understanding their children's unique needs.

Growing Autistic Self-Advocacy Movement

Thankfully, a growing community of autistic self-advocates is emerging. These individuals are eager to work with non-autistic advocates to bring about change in the mainstream rhetoric. Autistic self-advocates bring a wealth of knowledge and personal experience, which can significantly impact the discourse. However, even with this growing community, many autistic voices are still being silenced, often in the name of accommodation and support.

Works and Challenges of Autistic Self-Advocates

Autistic people are typically capable of speaking and advocating for themselves. However, the model of autism is heavily focused on deficits, which can make it difficult for autistic individuals to assert their own narratives. Parents and advocates often react strongly to autistic self-advocates, using their words against them in a bid to silence them. This is a clear example of the hypocrisy in silencing autistic community voices while disregarding the very arguments they present.

Inadequate Support and Resources

Many autism charities and information services are out of touch with the current needs and realities of the autism community. Especially in organizations that cater to individuals with learning disabilities, there's a tendency to script autistic voices in advance and even promote them as if they were the only voices that matter. This further silences the diverse range of autistic experiences. Even in primary care institutions like the NHS, outdated information and worst-case scenarios dominate public discourse, reflecting a lack of academic rigour and an outdated psychological understanding of autism.

Autistic Community Choices

The ultimate choice the autistic community faces is whether to be respected as capable individuals who can speak for themselves, despite the discomfort this may bring, or to be valued for their contributions while being allowed to avoid doing the hard things. It's crucial for the community to make a clear statement of intent regarding the kind of respect they want and the level of representation they desire.

Autistic self-advocates are not just voices; they are the voices that truly represent the diversity of the autism community. It's time for everyone to recognize the value and importance of these voices and ensure that they are amplified and heard in discussions about autism.