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Moving beyond Autism awareness: Reflecting on World Autism Month

Updated: Apr 3

Today marks ‘World Autism Awareness Day’, which is held on the 2nd of April every year. To be honest, I prefer calling it “World Autism Understanding Day” or “World Autism Acceptance Day”, as I feel many people are aware of the term ‘Autism’.  What is yet to be understood is the diversity of Autism and Autistic Culture. I spent today being… well… Autistic. I played the piano, cuddled my dog, stimmed, and engaged in a deep dive about Neurodiversity-affirming practice. A pretty ‘normal’ day for me! I am still waiting for my awareness power-up that Nick Walker mentioned (joking).

But, in all seriousness, April is a month that many Autistic advocates dread. For me personally, I exist as an Autistic person every day of the year. While April may be a good start to learn about Autism (depending on where you look), it is important that as a community, we commit to neuro-inclusion and understanding beyond just posts on Facebook. Furthermore, Autistic advocates have expressed concerns with the quality of information shared during World Autism Month, especially when sources are not Autistic led or neurodiversity-affirming.

So, how can we support our Autistic community during World Autism Month?


1.      Move from awareness to acceptance, recognition, appreciation, and celebration

This means looking beyond Wikipedia entries on Autism, and the diagnostic categories outlined by the Diagnostic and Statistical Manual of Mental Disorders (known for short as DSM-5-TR). The best way to learn about what it is like to be Autistic is to hear from Autistic people themselves. A quick search of #ActuallyAutistic and #AskingAutistics may give you some starting points on social media. It is so exciting to see the number of books, podcasts, YouTube channels, Facebook pages, and Instagram accounts run by Autistic people about Autism. When I was formally identified at the age of three, my mother actively looked for lived experience perspectives, but they were not as abundant as they are today.

At the end of the blog, I have provided a list of resources that I have enjoyed, but it’s by no means exhaustive. I welcome suggestions in the comments section, particularly for podcasts,  as I am shocking at listening to those!


2.      Support Autistic-led organisations and co-design

As you may notice with the resources above, most of them have either been produced by, or in consultation with, Autistic people. This also applies when considering Autism-specific organisations: Do they have an Autistic advisory board? Are there Autistic people in higher positions of leadership? Do they include a range of lived experiences, including perspectives of people with complex communication and support needs, and individuals from culturally and linguistically diverse backgrounds? It is important to prioritise Autistic lived experience with Autism-related projects and resources as we have important expertise related to our experiences being Autistic, how we define and understand Autism, and our goals regarding supports. In Australia, we have several Autistic led organisations, including, but not limited to: Yellow Ladybugs, The I CAN Network, and Reframing Autism. If you would like to show your solidarity on social media, consider using #GoYellow or #RedInstead in recognition of Autistic-led initiatives.  


3.      Share neurodiversity-affirming resources on Autism with friends, family members, and colleagues

The more we discuss Autism in the wider community, the more likely we are to facilitate understanding. This could be as simple as alerting your colleagues to World Autism Month and one of your favourite resources on Autism, or dispelling myths in general conversation. When my spoons allow, it gives me great joy to answer well-intentioned questions about Autism such as how it impacts my life, the truth about the supposed ‘Autism epidemic’, and where to find more information. Whilst you may wish to discuss topics with your Autistic colleague or friend, just be aware that it can become exhausting. I notice this when out in the community with my assistance dog, with well meaning people asking me detailed questions about why I have her, the training process, and how she improves my life. This is why I have included the list of resources below.  


4.      Check your workplace’s diversity and inclusion policy

Research conducted in Australia indicates that Autistic people are three times more likely than non-Autistic people with disabilities, and almost six times more likely than people without disabilities to be unemployed (Jones et al., 2019). Autistic individuals have identified a variety of potential barriers related to employment such as social requirements during recruitment and interactions with colleagues, negative attitudes of colleagues and supervisors, fear of discrimination as a result of disclosure, and sensory issues (Anderson et al., 2022; Davies, 2023). This means that an Autistic person may not even make it past the job interview process if it is inaccessible, the job description has been inadequately explained, or their social differences related to being Autistic are negatively perceived by interviewers.

While the onus has tended to fall on us as Autistic individuals to develop skills in interviewing, collaborating with others, and disclosing our Autism, this fails to address organisational and systemic barriers that may affect our employment outcomes. Not to mention, that even when we disclose our Autism, this can result in negative perceptions from colleagues (Romualdez et al., 2021). These impacts may decrease if we had more organisations committed to neuroinclusion, alternative job recruitment processes, and providing reasonable and necessary adjustments for all employees (City & Guilds Foundation, 2024). This may look like reviewing your workplace’s inclusion policy, suggesting professional development for employees and the management team, sharing resources on Neurodiversity and destigmatising neurological differences, and asking for access needs as part of all recruitment processes.  


5.      Engage with a variety of lived experience perspectives

As Yenn Perkis has said, “If you have met one Autistic person, you should meet more as we are awesome!”. Whilst I am Autistic and have expertise about my own experience, I love being able to follow and learn from other Autistic advocates. Our community is incredibly diverse and while we do share a lot of similar traits as part of our Autistic Culture, it is important to note that we have diverse support needs, communication methods, cultural and linguistic backgrounds, co-occurring disabilities, and intersectionality. If you already follow a few Autistic advocates, that’s great, but don’t stop there!! This includes Autistic non-speakers and part time AAC users, Autistic people with intellectual disabilities, Autistic people of colour, Autistic LGBTQIA+ people, and culturally and linguistically diverse Autistic people.

I hope that this has given you some useful starting tips on your journey towards Autism acceptance, understanding, and appreciation. I know even in my own advocacy journey, my ideas about Autism and Neurodiversity have shifted as I have connected with more voices. From growing up thinking I would never find people like me, to now feeling a strong sense of community with my neurokin, it has helped me immensely in unpacking my own internalised ableism and fuelling my passion for advocacy and inclusion. We all need to start from somewhere, however, it is important that when talking about Autism, “Nothing About Us Without Us.”  


Resources:

Books

·       Love and Autism by Kay Kerr

·       Late Bloomer by Clem Bastow

·       Back from the Brink by Tim and Sarah Chan

·       Supporting Autistic Girls & Gender Diverse Youth by Yellow Ladybugs

·       I Will Die on this Hill by Meghan Ashburn and Jules Edwards

·       The Reason I Jump by Naoki Higashida

·       Neurotribes by Steve Silberman*

·       Beyond Behaviours by Mona Delahooke*

·       Uniquely Human by Barry Prizant*

·       Queerly Autistic by Erin Ekins

·       Ten Steps to Nannette by Hannah Gadsby

·       PDA by PDA-ers compiled by Sally Cat

·       Growing into Autism by Professor Sandra Jones

·       Not an Autism Mom has numerous book lists for Autistic adults, children, parents, and educators: https://notanautismmom.com/2020/07/20/autism-books/


Podcasts

·       Uniquely Human: The Podcast, hosted by Barry Prizant and Dave Finch

·       Two Sides of the Spectrum, hosted by Meg Ferrell*

·       Late to the Party – a podcast on Autism, hosted by Bianca and Dan

·       Mr A+, hosted by Michael Theo

·       Square Peg Round Whole podcast

·       Amplified: Autistics in Conversation with Reframing Autism

·       The Yellow Ladybugs Podcast  


Social media/blogs/advocates

*These professionals are not Autistic themselves but are committed to Neurodiversity-affirming practice.


References:

Anderson, A. H., Stephenson, J., & Carter, M. (2022). A qualitative study of the transition to employment of former university students on the autism spectrum from Australia and New Zealand. International Journal of Developmental Disabilities, 1-10. https://doi.org/10.1080/20473869.2022.2091912   

City & Guilds Foundation. (2024). Championing and supporting Neurodiversity in the workplace. https://cityandguildsfoundation.org/what-we-offer/campaigning/neurodiversity-index/

Davies, J., Heasman, B., Livesey, A., Walker, A., Pellicano, E., & Remington, A. (2023). Access to employment: A comparison of autistic, neurodivergent and neurotypical adults’ experiences of hiring processes in the United Kingdom. Autism, 27(6), 1746-1763. https://doi.org/10.1177/13623613221145377

Jones, S., Akram, M., Murphy, N., Myers, P., & Vickers, N. (2019). Australia’s attitudes & behaviours towards Autism and experiences of Autistic people and their families: Autism and employment. https://www.amaze.org.au/creating-change/research/employment/

Romualdez, A. M., Heasman, B., Walker, Z., Davies, J., & Remington, A. (2021). “People might understand me better”: Diagnostic disclosure experiences of autistic individuals in the workplace. Autism in Adulthood, 3(2), 157-167. https://doi.org/10.1089/aut.2020.0063

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