Autism Acceptance Month
15th February 2022
Written by Justin Goddard
Autism Spectrum Disorder (ASD) affects up to 1 in 100 people around the world, and it’s during the month of April that these people, their families, and the wider community take the time to reflect on what living with the condition means, to celebrate the achievements of those who do, and to help bridge the gap between awareness and understanding.
The spectrum of human consciousness and how we perceive the world is wide and varied, though through the prism of our own experience it can be difficult to perceive the differences of others. For many a century, human nature was classified into ‘normal’ and ‘outlier’ categories, with those falling into the latter often misunderstood and poorly treated. In the last century, however, and particularly in recent decades, advancements in the fields of neuroscience and psychology have led to enormous improvements in our understanding of how the human mind works, and how it can work differently in different people. With that said, understanding is never complete, and it is during April that we as a community pay particular attention to raising awareness about what autism is, how it manifests, and how those who experience it are people worthy of the same respect and appreciation as anyone else.
Campaigning for autism awareness began as a movement in the early 1970s, with Autism Awareness Month (AAM) kicking off in 1972 after the concept was developed by the Autism Society. Growth has been steady through the years with the United Nations designating April 2nd as World Autism Acceptance Day, aligning the date with other movements. Today the event has reached worldwide prominence, uniting many people in a better understanding of what it means to be on the autism spectrum. While there are some disagreements around messaging and imagery, AAM remains an important part of the complicated task of delivering better outcomes for those on the spectrum.
Autism has a couple of associated symbols and themes. The multi-coloured puzzle piece is instantly recognisable. Developed in 1963 by Gerald Gasson, it quickly gained prominence as the most recognisable symbol of autism awareness. Gasson himself was a parent of a child on the spectrum, though the image itself has garnered controversy.
While some feel it to be a perfect representation of how puzzling the condition in all its forms can be, others feel it implies that those with ASD have a ‘missing piece’ that must be found to make them ‘normal’. The puzzle piece, therefore, is perhaps not the best image to rally around for what should be a unifying cause, but it still has prominence. Just remember not everyone in the ASD community finds it benevolent.
The colour blue is a big part of AAM and is used in many campaigns around the world. Blue ribbon badges, buildings lit up with blue lights, and various other uses of the colour will be seen a lot during April.
Acceptance versus Awareness
For decades, AAM officially stood for Autism Awareness Month, but in recent years there has been a strong shift towards using the word Acceptance instead.
It may seem like an inconsequential matter, but there is solid reasoning behind the change. For example, ‘awareness’ is a somewhat vague term and implies that there is a lot of work to be done making people aware of autism’s existence. This is not the case, nor is it the primary goal of the event, as the vast majority of people are of course aware that a condition called autism exists. Where people’s understanding often falls short lies more in how autism can manifest in staggeringly different ways, what sort of support people with ASD need and lack, and what living with it means.
Awareness also tends to have some negative implications. Many campaigns against serious illnesses for example have used the term ‘awareness’ as it is imperative in the fight against those diseases that people are aware of them in the first place. When a person is aware of cancer, for example, they can make lifestyle choices to reduce risk and help them avoid it. Autism, however, is not a disease, but a neurological difference, albeit one that often includes comorbidities ranging from chronic inflammation, auto-immune, toxicity, gut dysbiosis and cellular dysfunction through to ADHD and other developmental challenges. . There is no peer-reviewed research that conclusively establishes how to tangibly reduce the risk of Autism, there is no ‘cure’ and simply being ‘aware’ of it is not particularly helpful.
Acceptance, on the other hand, more effectively describes what the autism community needs and deserves. The focus should be on creating an understanding of autism as being different but equal, with the ultimate objective of creating a society that genuinely includes and embraces people with Autism, rather than classifying them as a somehow separate or distinct group to be ‘aware’ of. Some in the autism community also appreciate the word acceptance as coming with fewer connotations or judgements. While acknowledging the need for effective therapies and potentially life-long support for those with profound autism, focussing on autism as something negative, with the implication that it requires eradicating or fixing, marginalises those who don’t see having autism as something that is ‘wrong’ with them, but rather as an integral part of their identity. While usually done with the best of intentions by people trying to help, focusing on the treatment aspects of autism can be harmful.
For those reasons, we can see that the shift from Autism Awareness Month to Autism Acceptance Month is not simply a matter of evolving vernacular, but a simple yet important change that helps put the event more in line with the goals of the autism community and those assisting it.
Calendars are crammed with days dedicated to various causes, but it can often be unclear what exactly such a designation does to really help. With no catchy viral marketing campaign such as the ice bucket challenge providing an obvious way to show support, efforts during Autism Acceptance Month are generally more grassroots.
AAM is a decentralised event, meaning it’s up to individuals how to mark it. One challenge for people and organisations who want to get involved in finding ways to share, discuss and organise around issues concerning autism without disregarding the input of people affected by the condition. As this article illustrates, AAM is not a universally beloved event for the ASD community, with some feeling the way it tends to disproportionately focus on ‘celebrating’ autism to be a denial of reality and ultimately unhelpful in dealing with the real challenges it can present. This focus can, in turn, ironically result in such people being hidden even more from society.
But ultimately, getting involved with AAM means trying to do some good with the resources available. So what are some meaningful things people can do come April?
The Simple Stuff
Not everyone has the time for larger-scale efforts, but as the old saying goes it’s the thought that counts, and there are plenty of ways for everyone to get involved:
Blue is the official colour of Autism Acceptance Month. Incorporating the colour into outfits, accessories, homes and offices is a simple way to show that you’ve heard of AAM and want to show your support.
Social Media is a powerful tool for any cause, and can help messages travel further, more easily. Posting about AAM or people with ASD in your life during April is a simple way to spread the message. When posting about people, talking to them or their carers is the best way to get a message across that they feel they will benefit from.
While nomenclature might have evolved from Awareness to Acceptance, understanding the issue properly is still vital. Learning about autism is an underrated effort that will help make you an ally to the cause well outside just the month of April. Our own website is packed with resources to help you out, and there is no shortage of other places to look. Find our resources here
Donating is a simple way to do some measurable good. Combine this with some social media content and your single donation can easily grow organically into a small scale movement.
While much of our lives are digital, raising awareness in the outside world where we all live is just as important. Schools and workplaces are great places to have a conversation about autism and there are a host of different ways to get your peers involved too.
The Harder Stuff
The greater the effort, the greater the result, right? Small acts are very important, helping a wider variety and number of people get involved and for the message to spread quickly. But on the other end of the spectrum, larger efforts can produce some spectacle, raise large amounts of money in one go, or even have a direct impact on someone’s life.
Volunteering is a time-honoured tradition when it comes to giving back to causes you care about. Caregiving can be an exhausting business, and help is always appreciated. From after school activities, to assisting carers with some aspects of their daily life, to spending time with people in need of social interaction, there are plenty of ways to help out.
Joining an initiative is one thing, but getting the ball rolling yourself is another. Extending from the simple step of having a conversation with people from your peer group, schools and workplaces are perfect touchpoints in which to organise. This could be anything from asking your manager to set up a month-long collection tin to organising a charity walk.
Into the Future
Autism Spectrum Disorder is not a simple condition, a fact made obvious by the vastly different ways it can manifest in a person and the different needs that entail. For people on the high needs side of the autism spectrum, the greatest quality of life improvements are to be found in effective therapeutic supports that help them to lead a more empowered and independent life. For those able to live more independently, the most important focus is often not on therapeutic options but on how the world around them reacts to their neuro-diversity. For these people, it is the changing attitudes of others that deliver the biggest quality of life improvements. This is why the approach of Autism Awareness Month and other advocacy efforts has to be multi-pronged. There is no one size fits all approach to how AAM should be utilised to deliver the best outcomes as autism is so individually variable. The key for the future of AAM is to remain flexible and open to contributions from all parts of the ASD community and innovating based on feedback to become the most inclusive and effective version of itself.
Outside AAM itself, improving the lives of those with ASD relies heavily on the quality of research in the field. Perhaps unsurprisingly due to extremely wide variation within the spectrum, research into ASD has often found difficulty bringing findings from different fields together. This has hindered a cohesive plan for how to best tackle autism research and allocate resources. Stephen Edelson of the Autism Research Institute (ARI) has illustrated the need for an approach that is more focused on bringing different fields together. As one of the primary autism research organisations in the world, the ARI is in a great position to make this a reality moving forward.
With such a wide array of forms ASD can take, it’s no surprise that the campaign for awareness and acceptance has at times encountered difficulty. There are a lot of different people to take into account and a lot of outlooks to try and satisfy. That said, it’s heartening to see a movement like Autism Acceptance Month stand the test of time, grow organically, and respond flexibly to the challenges of the task it attempts. One of the goals of AAM is to get people to look at autism with less indifference and a greater understanding of neurodiversity and what living with the condition means to different people. No small task, but one worth pursuing.