From Autism Awareness to Autism Acceptance: Giving a Voice to People with Autism

Almost 50 years ago, the Autism Society in the U.S. launched its first autism awareness campaign. This evolved into Autism Awareness Month, which has taken place each April for decades now.

While the original idea behind this event was certainly well-intentioned, the dialogue and activities that have developed over the years to “celebrate” Autism Awareness Month have come to be viewed in a less-than-positive light by many people with autism and their family members, friends, and support people.

This is why, in 2011, Paula C. Durbin-Westby, an autistic and disability rights activist, advocated for a change.

As a person on the spectrum herself, Durbin-Westby knew first-hand how it felt each year as April approached. She would often hear statements in the autistic community along the lines of, “It’s not even April yet, and I can’t wait for it to be over with for another year” and “I wonder what twist they’ll come up with this year to describe our ‘devastating disorder.’”

Finally, Durbin-Westby said that she’d “had enough” and decided to launch Autism Acceptance Month to promote a more positive and healthy view of people with autism. Her goal was not only to recognize, but also to value the varied human experiences of autistic individuals.

The word “acceptance” is clearly more welcoming, understanding, and pro-active than mere “awareness.” “Acceptance,” as Durbin-Westby frames it, is about being pro-neurodiversity, with a focus on supports and services as opposed to the typical negative language describing autism that tends to be used by non-autistic people.

A Shift in Focus: Organizations Embracing Autism Acceptance

In recent years, numerous companies and organizations have followed Durbin-Westby’s lead, shifting their focus from Autism Awareness to Autism Acceptance Month.

Major non-profits like The Autistic Self Advocacy Network (ASAN) and the Autism Society of America have rebranded their messaging to emphasize acceptance, aiming to engage the community in actions that ensure autistic individuals can live fully and enjoy equal opportunities. In 2016, Apple even did an Autism Acceptance Month iPad video that went viral.

Promoting Acceptance and Support

It’s certainly a positive development that so many for-profit and non-profit companies and organizations are jumping on board the autism acceptance train. But the important thing is whether change happens at the individual, personal level for people with autism.

So, the question is, how can we actively accommodate and include people with autism in community life, as opposed to simply acknowledging their existence?

Which begs the question, “What does active accommodation and inclusion look like?” Here are some thoughts to consider:

·???????? Educate Yourself and Others: Learn more about autism by immersing yourself in the topic. Most importantly, make sure to seek out the thoughts and opinions of people with autism in the course of your professional development. There’s nothing like learning straight from the source!

·???????? Challenge Stereotypes: As you become more knowledgeable about autism and the ideas and opinions of people with lived experience, make it a point to speak out against and correct misinformation about autism whenever you encounter it.

·???????? Support Autistic-Led Initiatives: Engage with and support projects led by autistic individuals. If you run events, privilege writings and creations by people with autism over those of non-autistic people. Select speakers with autism and pay them on a level commensurate with non-autistic “experts.” And obtain Autistic input when developing ideas and projects “for” people with autism. They have real contributions to make in the areas of consultation, development, and implementation of initiatives—if you give them a chance.

An Example of Acceptance: Jamie and Lion

Now that we’ve talked about the difference between focusing on autism awareness vs. focusing on autism acceptance, I’d like to share a story I read recently from a gentleman with autism. This story offers a great example of a specific challenge many people with autism deal with—difficulty in communicating—and how important it is for those of us who aren’t autistic to see each person’s challenge from their point of view.

The author of this article is listed as “Jamie and Lion.” I wasn’t sure what that meant until I got into the article and found out that Jamie is an adult with autism and Lion is his “plushie companion” that stays with him at all times and “helps make the world a slightly more understandable place.” Now, someone without autism might look at that detail and think that this person is somehow “mentally compromised” in some way. That is, until they find out that Jamie is a digital accessibility specialist, software engineer, and maker who has held leadership roles within the BBC and worked with a wide range of companies, from banks to game studios.

In this article, Jamie talks about the challenge he (like many with autism) has with communication and distinguishes between three key components of the ability to communicate:

·???????? Ability: One element that could hold someone back from speaking is the ability to do so. For example, if you find yourself in Paris and you don’t know how to speak French, you don’t have the ability to speak and be understood in that context. Jamie was at one time unable to speak about the concept of pain. He didn’t really understand what people meant by the word. By working with support people in his life, he was able to access the ability to speak about pain by labeling different kinds of pain with colors: “purple” pain was a sharp pain, “brown” pain was a bruising pain, etc. Jamie has learned that, if ability is the problem, he needs to learn the skills necessary to communicate what needs to be said.

·???????? Capability: Just because you have the ability on a good day to communicate, that doesn’t mean that you always are capable of using that ability. For example, Jamie’s capability to speak drops significantly when he goes to a café that’s noisy and busy. The environment overwhelms him. Also, one-on-one conversations are much easier for him than three-way conversations. The more complex the situation, the more his capability to communicate is impacted. Knowing this, he has learned how to find or create the right environment in which to communicate so he has the capability to do so.

·???????? Capacity: This element has more to do with energy and focus than anything else. For Jamie, as with many people with autism, communicating can take a lot of effort and will. This is different than capability. For example, I’ve said that Jamie’s capability to communicate is diminished when he’s at a noisy, crowded café. That doesn’t necessarily mean that he won’t be able to do so. But if his energy and focus is already low, he won’t be able to “power through.” If his energy is up, he might be able to communicate rather well even in this challenging situation. Jamie has also learned that, even when he has the ability and capability to speak in a certain situation, it might not be the best choice. For example, if he uses an AAC speech app instead of talking, he can save up his energy and focus and have those resources at his disposal to use in the evening if he knows he’s going to be in a challenging communication environment later.

As you can see, these factors impact many people with autism as it concerns their ability to communicate. Those of us without autism might be confused about why someone is able to communicate at some times, but not at others. But when we take the time to listen to the stories of people with autism and allow ourselves to see the situation from inside their lived experience, it can open our eyes and we become more accepting of both their challenges and their capabilities.

AAC and Autism—Using Speech Apps to Communicate

As you saw in Jamie’s story, above, AAC apps can play an important role in supporting communication for some individuals with autism. These tools aren’t just for those who can’t speak at all; they can also benefit those, like Jamie, who face challenges in speaking at certain times based on the situation and environment.

Apps like our own APP2Speak can significantly enhance autonomy and interaction by providing a platform for users to still be able to articulate their thoughts and participate in conversations even when they don’t have the capability and/or capacity to do so with their own speech.

With features designed to accommodate diverse needs and situations, APP2Speak helps bridge the communication gap, offering a voice to those who otherwise might struggle to be heard.

Conclusion

The shift from Autism Awareness to Autism Acceptance that has been taking place over the past decade is more than simply a change in terminology; it’s a call to action for everyone to embrace, support, and promote the rights of individuals with autism.

Let’s move beyond awareness and resolve to work toward creating a more inclusive, accepting society. Together, we can build a world where every voice, including those of people with autism, is heard and valued.