Autism Acceptance Month originated back in 1972 when the Autism Society hosted one of its first nationwide awareness campaigns, National Autistic Children's Week, which subsequently evolved into Autism Awareness Month. Similarly, Autism Acceptance Day (formerly known as Autism Awareness Day) first began in 2008 when the United Nations designated April 2 as World Autism Awareness Day to raise awareness of the need to improve education, career opportunities, and community services and supports for Autistic individuals.
Later in 2011, Paula C. Durbin-Westby organized the first Autism Acceptance Day celebration to help correct negative images of autism that had been prevalent in many autism “awareness” media pieces and events. This celebration, she wrote, was pro-neurodiversity, pro-supports and services, against “cures”, and not about fundraising or other agendas. This shift in terminology is important. Today, society has a greater awareness of autism than ever before, but autistic people still consistently face a number of struggles throughout daily life, from bullying and prejudice to limited job opportunities and access to health care. Education about the autistic community is important, but advocates argue that we shouldn’t stop there. Autistic people need not just awareness, but acceptance and inclusion in order to have true support from their communities.
Autism Acceptance celebrations have grown in popularity in the Autistic community as participants spread the word. The number of people who participate in Autism Acceptance Day and Autism Acceptance Month observances continues to grow. Autistic advocates have taken the lead in bringing about this much-needed cultural shift by working for systems change and by sharing stories and perspectives, not only during the April events but throughout the year as well.
Autism is a spectrum condition and affects people in different ways. The definition of autism has changed over the decades and could change in future years as we understand more. Like all people, autistic people have their own strengths and weaknesses. Below is a list of difficulties autistic people may share, including the two key difficulties required for a diagnosis.
- Social Communication & Social Interaction Challenges
-
Social communication
Autistic people have difficulties with interpreting both verbal and non-verbal language like gestures or tone of voice. Some autistic people are unable to speak or have limited speech while other autistic people have very good language skills but struggle to understand sarcasm or tone of voice. Other challenges include:
- taking things literally and not understanding abstract concepts
- needing extra time to process information or answer questions
- repeating what others say to them (this is called echolalia)
Social interaction
Autistic people often have difficulty 'reading' other people - recognizing or understanding others' feelings and intentions - and expressing their own emotions. This can make it very hard to navigate the social world. Autistic people may:
- appear to be insensitive
- seek out time alone when overloaded by other people
- not seek comfort from other people
- appear to behave 'strangely' or in a way thought to be socially inappropriate
- find it hard to form friendships
Read more about social communication and social interaction challenges.
- Repetitive & Restrictive Behavior
-
With its unwritten rules, the world can seem a very unpredictable and confusing place to autistic people. This is why they often prefer to have routines so that they know what is going to happen. They may want to travel the same way to and from school or work, wear the same clothes or eat exactly the same food for breakfast.
Autistic people may also repeat movements such as hand flapping, rocking or the repetitive use of an object such as twirling a pen or opening and closing a door. Autistic people often engage in these behaviors to help calm themselves when they are stressed or anxious, but many autistic people do it because they find it enjoyable.
Change to routine can also be very distressing for autistic people and make them very anxious. It could be having to adjust to big events like Christmas or changing schools, facing uncertainty at work, or something simpler like a bus detour that can trigger their anxiety.
Read more about repetitive behaviors and dealing with change.
- Over- or Under-Sensitivity to Light, Sound, Taste, or Touch
-
Autistic people may experience over- or under-sensitivity to sounds, touch, tastes, smells, light, colors, temperatures or pain. For example, they may find certain background sounds like music in a restaurant, which other people ignore or block out, unbearably loud or distracting. This can cause anxiety or even physical pain. Many autistic people prefer not to hug due to discomfort, which can be misinterpreted as being cold and aloof.
Many autistic people avoid everyday situations because of their sensitivity issues. Schools, workplaces and shopping centers can be particularly overwhelming and cause sensory overload. There are many simple adjustments that can be made to make environments more autism-friendly.
- Highly Focused Interests or Hobbies
-
Many autistic people have intense and highly focused interests, often from a fairly young age. These can change over time or be lifelong. Autistic people can become experts in their special interests and often like to share their knowledge. A stereotypical example is trains but that is one of many. Greta Thunberg's intense interest, for example, is protecting the environment.
Like all people, autistic people gain huge amounts of pleasure from pursuing their interests and see them as fundamental to their wellbeing and happiness.
Being highly focused helps many autistic people do well academically and in the workplace but they can also become so engrossed in particular topics or activities that they neglect other aspects of their lives.
Take a look at the Spectrum magazine, written for and by autistic people.
- Extreme Anxiety
-
Anxiety is a real difficulty for many autistic adults, particularly in social situations or when facing change. It can affect a person psychologically and physically and impact quality of life for autistic people and their families.
It is very important that autistic people learn to recognize their triggers and find coping mechanisms to help reduce their anxiety. However, many autistic people have difficulty recognizing and regulating their emotions. Over one third of autistic people have serious mental health issues and too many autistic people are being failed by mental health services.
- Meltdowns & Shutdowns
-
When everything becomes too much for an autistic person, they can go into meltdown or shutdown. These are very intense and exhausting experiences.
A meltdown happens when someone becomes completely overwhelmed by their current situation and temporarily loses behavioral control. This loss of control can be verbal (eg shouting, screaming, crying) or physical (eg kicking, lashing out, biting) or both. Meltdowns in children are often mistaken for temper tantrums and parents and their autistic children often experience hurtful comments and judgmental stares from less understanding members of the public.
A shutdown appears less intense to the outside world but can be equally debilitating. Shutdowns are also a response to being overwhelmed, but may appear more passive - eg an autistic person going quiet or 'switching off'. One autistic woman described having a shutdown as: 'just as frustrating as a meltdown, because of not being able to figure out how to react how I want to, or not being able to react at all; there isn’t any ‘figuring out’ because the mind feels like it is past a state of being able to interpret.'
- Varying Support Needs
-
Autism is a spectrum disorder which means autistic people can have varying support needs. One third of autistic people also have a learning disability. The autism spectrum isn't linear and many people talk about the 'spikey profile.' This means an autistic person could be a leading expert on nuclear physics but unable to remember to brush their teeth or clean their clothes.
Some autistic people will have high support needs, which may mean that they require full time care and support. Some people may need a bit of support with day to day activities, while others live fully independent lives. With the right support in place, all autistic people should be able to live the life they choose.
Hear people's stories and find more related advice and guidance.
The goal of autism advocacy is a world in which autistic people enjoy equal access, rights, and opportunities. On an individual level, the first and most important step is education. As with many marginalized identities, placing the burden of education solely on autistic people can make them feel incredibly frustrated and exhausted, especially when they might not have the immediate capacity to manage that extra mental and emotional labor. So take initiative! There are so many great resources available to learn from, created by people who have chosen to dedicate their time and energy to educating others. Many of these are available through your local library or linked to in this blog. And remember - when doing your own research, always use critical thinking skills and avoid sources based in ableism, bias, pseudoscience, and other forms of misinformation.
At an organizational level, groups like like ASAN (Autism Self Advocacy Network) and the UK's National Autistic Society work to empower autistic people across the world to take control of their own lives and the future of their common community, seeking to organize the autistic community to ensure their voices are heard in conversations about them. In other words, "Nothing about us, without us!"
ASAN work aims to make our society more inclusive for autistic people, to make sure that autistic people are in control in their own lives, and have a say in policies that affect them. They work to protect disability rights and civil rights as well as celebrate and promote autistic community and culture. There are entire pages on their website dedicated to self-advocacy information and "power tools" resources, freely available to anyone who is interested. Their work includes:
- Policy and legal advocacy
- Making educational resources
- Creating advocacy tools
- Leadership training for autistic self-advocates
The UK's National Autistic Society also champions a number of important campaigns, including changing the appalling treatment of autistic people in mental health hospitals, providing better support and services for autistic people, and supporting late-diagnosed women and nonbinary people. Early in 2016, they launched their Every Teacher campaign in partnership with Ambitious About Autism. With the vast majority of autistic children in mainstream education, every teacher will teach a child on the spectrum at some point in their career so it is essential that every teacher has the tools to support all of their students. Ultimately over 7.000 people signed their open letter and they successfully convinced their government to include training in autism as part of all Initial Teacher Training (ITT). They were similarly successful in another initiative the year prior to reduce dangerously long waiting times for autism diagnoses, a game-changing development that has and will continue to help autistic people of all ages receive better access to health services and resources.
Autism advocacy efforts like these are incredibly important and always looking for support. Volunteering, donating, signing petitions, sharing and answering surveys, or even just spreading the word are great ways to get involved and show support.
- Organizations
-
Autistic Self Advocacy Network (ASAN): provides support, community, and public policy advocacy, by and for people on the autism spectrum.
Autistic Women & Nonbinary Network (AWN): seeks to share information which works to build acceptance and understanding of disability, while dispelling stereotypes and misinformation which perpetuate unnecessary fears surrounding an autism diagnosis.
Self Advocates Becoming Empowered (SABE): works to ensure that people with disabilities are treated as equals and are given the same decisions, choices, rights, responsibilities, and chance to speak up to empower themselves as everyone else.
Asperger/Autism Network (AANE): works with individuals, families, and professionals to help people with autism spectrum build meaningful, connected lives; they provide resources on a wide variety of topics as well as community, support, and advocacy.
The Color of Autism: supports African American children with autism and their families. The organization works to provide culturally competent resources for early and accurate diagnosis and empower families to advocate for services.
International Disability Alliance: made up of 14 global and regional organizations that represent people with disabilities, they advocate at United Nations for disability inclusion across the globe.
- More Information
-
You may have noticed that Autism Speaks was not included on the previous list of recommended organizations. While it does have the benefit of name recognition due to a number of "awareness" campaigns, it has also received much criticism, especially from members of the autism community who urge others not to support the organization.
The primary reason for this is how it views and frames autism. While they have changed their mission statement and campaign in recent years, Autism Speaks was founded on the idea that autism is a disease that needs to be cured. The organization’s original mission statement reads, "We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families and society and we work to bring hope to all who deal with the hardships of this disorder."
Rather than focusing on raising awareness and advocating for the acceptance of autism in society, Autism Speaks treats it like a disease that needs to be cured or eradicated. Such a mindset increases the stigma and discrimination against autistic people by spreading the harmful idea that there is something inherently lesser or wrong with them that needs to be "fixed".
To learn more about why Autism Speaks was not included on the previous list, take a look at ASAN's free download "Before You Donate to Autism Speaks, Consider the Facts".
Library Materials
- Unmasking Autism: discovering the new faces of neurodiversity by Devon Price
- Visual Thinking: the hidden gifts of people who think in pictures, patterns, and abstractions by Temple Grandin
- Sincerely, Your Autistic Child: what people on the autism spectrum wish their parents knew about growing up, acceptance, and identity by Various Authors
- The way I see it : a personal look at autism by Temple Grandin
- My life beyond autism: a Mayo Clinic patient story by Hey Gee
- Same but Different: teen life on the autism express by Holly Robinson Peete
- Autism Equality in the Workplace: removing barriers and challenging discrimination by Janine Booth
- How to be Human: diary of an autistic girl by Florida Frenz
- Fall Down 7 Times Get Up 8: a young man's voice from the silence of autism by Naoki Higashida
- The Reason I Jump: the inner voice of a 13-year-old boy with autism by Naoki Higashida
- We're not broken: changing the autism conversation by Eric Garcia
- Odd girl out: my extraordinary autistic life by Laura E. James
- Autism in heels: the untold story of a female life on the spectrum by Jennifer Cook O'Toole
- An adult with an autism diagnosis: a guide for the newly diagnosed by Gillan Drew
- May tomorrow be awake: on poetry, autism, and our neurodiverse future by Chris Martin
- Unseelie by Ivelisse Housman
- A Kind of Spark by Elle McNicoll
- Autistic Women & Girls
- Autism & Gender Identity
- Autism-Friendly Guides (how to make your business or service autism-friendly)
- Advice & Guidance
Autistic Women & Nonbinary Network (AWN)
- AWN Welcome Packets (English)
- AWN Welcome Packets (Plain Language)
- AWN Welcome Packets (Spanish)
- What is Autistic Burnout?
- AWN Webinars
Autistic Self Advocacy Network (ASAN)