avatarShamus Hart

Summary

Shamus Hart discusses the impact of the National Autism Strategy and the importance of societal changes for autistic individuals during Autism Awareness Month.

Abstract

During Autism Awareness Month 2024, Shamus Hart, an autism advocate and spokesperson for Autism Awareness Australia, appeared on Nine Today Extra with Nicole Rogerson to discuss the new National Autism Strategy. Hart emphasizes the need for small, practical changes to foster inclusivity, such as providing noise-cancelling headphones or switching to LED lights, and the importance of considering the diverse needs of the autistic community. He highlights the significant disparities autistic individuals face, including a lower life expectancy, higher suicide rates, and barriers to work and education. The National Autism Strategy aims to address these issues by focusing on social inclusion, economic welfare, diagnostic services, and health support, while also combating societal stigmas and myths about autism. Hart advocates for a nuanced approach that goes beyond a one-size-fits-all solution, aiming to improve the quality of life for autistic adults and facilitate their meaningful participation in society.

Opinions

  • The author believes that the National Autism Strategy is urgently needed to address the disparities faced by autistic individuals.
  • Hart appreciates the platform provided by Nine Today Extra and Autism Awareness Australia for discussing autism advocacy.
  • He suggests that inclusivity can start with simple measures like sensory accommodations and written instructions.
  • The author points out that autistic individuals often face discrimination and a lack of accommodation in workplaces, leading to higher rates of suicide attempts.
  • Hart emphasizes that any strategy must consider the lived experiences and spectrum of needs within the autistic community.
  • He criticizes the societal stigmas and misconceptions about autism that contribute to exclusion and denial of rights.
  • The author argues for a tailored approach to the National Autism Strategy, recognizing that a singular vision cannot meet the diverse needs of autistic individuals.
  • He calls for ongoing action beyond Autism Awareness Month, such as employment targets, continuous inclusion efforts, and support for autism charities.

What has really changed for Autistic people?

Autism Awareness Month 2024 is back upon us. Many talk about rights and the need for change. I talk on Nine Today Extra with Nicole Rogerson about the new Autism strategy.

Photo by Shamus Hart on Instagram

Firstly, a BIG shoutout to Nine Today Extra and Autism Awareness Australia for including me on the panel. It was an incredible experience to be considered to discuss autism on such a broad-reaching platform.

Secondly, my partner, Jo Abi, is my partner. And to answer the most commonly asked question, we are still delighted together, having been together for two years as of April. Thank you, Nicole, for playing Matchmaker and your wonderful TV panel support.

The video can be viewed in the post below.

For Autism Awareness Month, I managed to get a few TV appearances. The Nine Today Extra is the most significant appearance, and I had the opportunity to discuss autism and needs.

To quote Ron Burgandy, “I don’t know how to tell you this; I’m kind of a big deal”…

But seriously…

It was amazing to see where advocating for autism rights and needs can lead a person. Talking about it is one thing; implementing a solution is completely different. The BIG thing is the small changes anyone can make that will make a difference to many people living on or around the spectrum.

So, I got to do my thing on TV. Starting small and addressing the sensory world is the easiest way to be inclusive. For example, supplying noise-cancelling headphones, changing out to LED lights, or giving instructions/processes in writing are easy ways you can be inclusive. The other is asking the autistic community what they need instead of telling them what they can have.

Photo by Shamus Hart on Instagram

Autistic individuals have different levels of rights compared to the rest of society. And that’s entirely what this strategy attempts to address: the crucial barriers that deny basic rights. For example:

  • Autistic individuals have a life expectancy of 20 years less than the general population.
  • An autistic employee is 17 times more likely to attempt suicide compared to neurotypical employees. This is due to a lack of accommodation, bullying and harassment in the workplace.
  • Barriers to work and education are high for individuals with autism because of the social structure intended to benefit one neurotype.
  • Most autistic indivudal retire into poverty due to economic exclusions and workplace barriers.
  • Services (like health and insurance) are generally more expensive than neuronormative. This means, in general, autistic individuals miss out on the primary care needed due to the costs.

So yes, life is on hard mode for many living on the spectrum.

The core of the argument for the National Autism Strategy (NAS) centres around the disparity of needs. The crucial distinction is that for many neurodivergent individuals, we have privileges bestowed upon us by neuronormative individuals.

Key takeaways:

  • A National Autism Strategy is urgently needed, as indivudal with autism are the most disadvantaged in society across all domains.
  • Any strategy needs to address the social barriers to being autistic. It’s not just It'st addressing the medical or stigmatised view of autism.
  • The strategy needs to consider the lived experience and the broadness of the spectrum. Thus, a one-size-fits-all will never work.
  • It needs far more detail around the ‘doing’.
  • Addressing 'the problem with inclusion from all areas of society addresses many of the mental health and well-being problems autistic indivudal like myself face.
  • Social stigmas are still the most significant barrier that autistic individuals face. These are the general understanding of what autism is, and the types of needs we need to accommodation.
Photo by Shamus Hart on Instagram

The strategy, in the simplest terms, is addressing a Rawlsian position. An enlightened society must take advantage of the most disadvantaged individuals in society. In this case, it’s the autistic community.

The NAS social strategy hits certain fundamental areas. They have identified social inclusions, economic welfare, diagnostic services, and health/mental health support. I agree that these are critical, but the main factor still remains societal stigmas and myths pertaining to autism.

All exclusions stem from the simple fact that the problem is the social concept of autism and disability that denies rights.

I consider the most significant hurdle with the guidelines, as needed as they are, to be that individuals with autism will be told what they need—as opposed to getting buy-in and considering the archetypes of needs for supporting autism.

Explain and then address the phenomenological needs of the indivudal. This means the sensory experiences and the social barriers.

I take the UX (User eXperinece) position on this strategy as a deliverable. Government departments need to consider that a one-size-fits-all approach rarely works, and this is especially so with autism. With the varying degrees of function and agency, a singular vision won’t necessarily create the changes required. The changes should be intended to pull many autistic adults (like myself) out of poverty and into the workplace, where they will be valued.

Photo by Shamus Hart on Instagram

This is why I believe that the hurdles will be inclusion and meaningful change. Addressing the sensory and improving the resources available to educate schools and workplaces will make a difference.

However, let's go back to the main problem of inclusion and rights. Everyone can do a little; that collective will make a massive difference with autism and inclusion. These included:

  • As a workplace, make a target of employing an autistic person in April.
  • Inclusion doesn’t end in May.
  • Donate to an autism charity, like Autism Awareness Australia.
  • Schools, Universities, and Workplaces provide education and training around autism.

So, do something because talking is cheap.

Autism
Disability
Mental Health
Psychology
Advocacy
Recommended from ReadMedium