My Reflections from Autism Month

As April 2024 came to an end, I found myself reflecting over what I observed in the greater autism community during the month. April is…

Autism Awareness Month

Autism Acceptance Month

Autism Appreciation Month

World Autism Month

And I’m sure there are other names assigned to the month by different groups and advocacy efforts. No matter the name used for April, it is a month where I saw a lot of activity happening, and I have thoughts I would like to share. The month may be over, but the work is far from over. For me, I hope this writing process can serve to help me find more clarity into some possible next steps. For you, I hope reading my words will be informative, give you clarity, make you want to reach out, feel affirmed, or at least activate your brain a bit. 

Autism Awareness before…

Autism Acceptance before…

Autism Appreciation 

I have a preference for referring to April as Autism Appreciation Month because I want to go beyond someone knowing we exist or permitting us to exist. I want people to appreciate the traits that define an autistic identity. I want people to appreciate the strengths of autistics. I want people to appreciate the differences that exist amongst the autistic community. 

But when I saw people making statements about the continued need for awareness because it doesn’t exist on a wide scale, I knew they were right. In my mind, pushing for appreciation carried with it the assumption that awareness and acceptance were on that path, but I needed to be more patient and intentional. It is easy to see the oversight, and it’s even a little embarrassing considering how often I speak in front of audiences whose understanding of autism is frequently based on harmful stereotypes, media representations, or outdated information - audiences made up of professionals we would hope/assume know at least the basics. 

So when we keep with the push to educate people on the realities of autism, we help the world understand the true range of autistic experiences. I encounter people who are surprised to learn I am autistic because I am a successful professional or because I am able to stand in front of a crowd and give a lecture (for anyone who has seen me present in person, is lecture even a word for me to use?!?). “You must be high-functioning” they say when they learn I’m autistic, but by the end of the presentation, the audience has heard that functioning labels do not exist from a clinical perspective, are not logical, and are harmful for anyone who receives the label regardless if it’s high or low. 

I also encounter people who make other assumptions about some autistics (and others in general) based on a range of presentations. Non-speaking autistics are often believed to have an intellectual disability, and while that may be true for some, it is certainly not true for all. However, most non-speaking autistics communicate experiences of being infantilized, and many have experiences of receiving harmful, inaccurate labels as they sit and listen. 

I constantly remind people that the autism spectrum is not linear or binary (which wouldn’t even be a spectrum!). Instead, the autism spectrum is best pictured as a color spectrum that is radiant with so many different possibilities. Truly, I wish people would see all of humanity on such a spectrum making space for all of the diversity and beauty. 

The Autism Community Divides are Real

An unfortunate pattern I continue to see is the divide between factions in these efforts over what autism is and how it should be seen. I saw a post (that I could not find again but wish I could) that referenced the fact that the difference in how autism should be viewed is generally separated between the autism community and the autistic community.

The difference between the two is subtle. Did you catch it? I think most autistic folks reading this did catch it. 

The autism community is made up of people who exist adjacent to autistic people and play a role in their lives. This community includes parents and family members, healthcare professionals, educators, and advocacy organizations, and the most common views held by people within this community are deficit based and not informed by autistic voices. While many would pushback on that assertion, the symbols most commonly used by those within this community are ones rejected by the autistic community due to their history. More to come on symbols in a bit. 

The autistic community is made up of autistic individuals in support of autistic voices. There is a lot of connection and support amongst this community, especially in social media spaces where people are more able to overcome accessibility needs and limitations. However, this autistic community is primarily made up of adults with some adolescents able to access the community on their own.

There are three other groups that I think need to be recognized that I don’t think are represented in these two I’ve described. The first group is autistic kids, the majority of whom have received their information about autism from members of the autism community. They frequently wear clothes and accessories (especially jibbitz) that represent autism with puzzle pieces, and they’re often the color blue (more on colors coming too). These kids are often sheltered from the affirming messages that the autistic community would love to be able to share. 

The second of these groups consists of parents of autistic kids who do not identify as part of the autistic community but are actively working to hear their messages. I have a lot of followers on social media who fit into this category, and plenty of the parents in families I work with are in this category as well. These parents recognize the value of listening to the lived-experience of members of the autistic community, and they want to provide support for their own children based on what others shared did and didn’t work for them. 

The third group is healthcare professionals who are not members of the autistic community but prioritize listening to live-experiences in order to more effectively provide neurodivergent-affirming care. These professionals are active in the neurodiversity movement as allies and supports, and many of them put in hard work battling against the strong currents within their professions that push them to continue to view autistics from a lens that would see them as problems to be fixed. 

BIPOC Autistic Representation is Desperately Needed

“Representation matters” is a refrain I have used often in my career. It means a lot for someone to see another person with whom they share an identity, and it means even more for a young person to see an adult with similar identities. I have had autistic preteens tell me they have never met an autistic adult before, and then they light up when they remember that I am autistic and add “except you!” to the end of their sentence. Representation matters.

Intersectionality is the idea that the identities we hold come together at a crossroads, and particularly when it comes to historically-marginalized identities, some of these crossroads (or intersections) can feel very lonely. There is significant criticism on social media about the fact that the majority of autistic representation is from white creators, and there is a lack of BIPOC representation. I see this as a significant concern, and I agree that more BIPOC representation is desperately needed.

Interestingly, I think the lack of BIPOC representation on social media reflects the limitations that exist for BIPOC individuals receiving an autism diagnosis. Recent prevalence data suggests that BIPOC diagnoses have actually increased significantly, but this data only reflects children under 8; content creators on social media are adults who are navigating a very different system than children. 

Neurodivergent Symbols Continue to be Misunderstood

The gold infinity sign is the symbol for autism that has been adopted and accepted by the autistic community. The rainbow infinity sign is the symbol for neurodiversity that has been adopted and accepted by the neurodiversity movement and community. The puzzle piece is the symbol for autism that was created in the 1960s that represented the fact that autism is “a puzzling condition” and the need to find the missing piece to the puzzle. 

The puzzle piece continues to be seen on a wide scale as the most recognized symbol for autism, and it is the symbol used by many organizations. As with many other symbols in this world, the harmful history cannot be erased, and there cannot be enough distance created from the original meaning for it to become anything less than problematic. The fact that so many organizations and individuals continue to use this symbol reflects the fact that they either do not know that history, or they do not see the original meanings as incorrect or harmful.

Many families I encounter received all of their information on autism from healthcare providers or educators. They received a report from a psychologist with a resource list, and they went through that list. The majority of these resources have puzzle pieces in their logos, websites, and paperwork. Is it fair to blame families for trusting the providers? I don’t think so. 

But I do think it’s problematic that so many healthcare providers willingly choose to ignore autistic voices and preferences. 

And I do think it’s problematic that so many organizations claiming to focus on advocacy for autistics willingly choose to ignore autistic voices and preferences. 

Oh, and just in case you’re wondering… the infinity symbol represents the infinite possibilities and presentations of autism and neurodiversity. The gold represents autism because Au is the symbol for gold on the periodic table. The rainbow represents an even broader spectrum of possibilities. 

Autism Color Choices

I didn’t light it up blue. In fact, I hardly wore a blue shirt to work for the whole month of April, and I definitely didn’t create any content for social media in the color blue. That’s really hard to do considering how much of my closet is blue! 

Why did I avoid blue? The historical view was that only boys are autistic, and blue is the color we use to represent boys. As autism has become better understood (primarily through the advocacy of the autistic community), we now know that autism is not a gendered experience, and if anything, the autistic community comprises a wider range of gender experiences than other communities. 

Red instead became a rallying cry in an effort to combat the old, harmful stereotypes perpetuated by the color blue. Red is meant to represent the passion of those active in the powerful social movement that is fighting for autism to be seen through an empowering perspective and for autistics to be seen and treated with respect, acceptance, and appreciation. 

Final Thoughts

Something worth knowing about me is that my brain does not work in linear patterns, so I don’t write in a beginning to end manner. In fact, I am frequently unsure in what order different sections will end up by the end, and that can lead to confusion for some. If you have ever seen me give the same presentation more than once, you have likely seen slides moved around a bit between presentations as my brain decided a different order made more sense. That said, I hope the flow of this worked well enough for your brain. I hope you walk away with your brain activated. And I hope you will reach out if you would like to have further conversations.

- Sam Marion, MSW, LCSW