This April, “Autism Acceptance Month” celebrates differences as we work to build an inclusive society where individuals with autism live fully through connection and acceptance. Together, with other national autism organizations, the Autism Society of America is leading a legislative effort for lawmakers to federally and globally designate April as Autism Acceptance Month, a shift from the commonly used phrase “Autism Awareness Month.”
While work to educate others about autism is important, words matter -- the need for acceptance is greater than ever, as autistic individuals strive to live fully in all areas of life. We acknowledge the importance of fostering acceptance and the need to bring change through improved support and opportunities in education, employment, accessible housing, affordable health care and comprehensive long-term services and supports.
Designed to build a better awareness of the signs, symptoms, and realities of autism, #CelebrateDifferences focuses on providing information and resources for communities to be more aware of autism, promote acceptance, and be more inclusive in everyday life.
We acknowledge the experiences of our parents, families and community members who have family members on the autism spectrum. The needs of these individuals and families can be very challenging and may require a substantial amount of behavioral, psychological, pharmacological and mental health support. Please reach out to our PASS and DEI groups should you have questions or would like more support with the Pittsford Community.
Understanding the Spectrum
The diagnostic criteria for Autism Spectrum Disorder was last updated in the DSM-V Manual in 2013 and is always subject to revision. Currently there are several ways that the spectrum can be interpreted.
Often this is mixed with an image of a linear spectrum.
But today, positions on this manner of description are changing. Suzanne Comberousse, in a "Beginner's Guide to Neurodiversity" describes:
"More pro-neurodiversity people reject functioning labels (high or low) and the notion of a linear spectrum of autism (mild to severe) Many consider the autistic spectrum to resemble a continuous color wheel":
"This is an example of a non-linear spectrum. For autism, each color would represent elements like external or internal sensory sensitivities, emotional sensitivities, receptive or expressive communication ability, and more."
Comberousse clarifies,
"This is in no way a denial of disability. On the contrary, it is an understanding that different people need different types of support - and that mental health support and physical health support are equally important. It is an understanding that disability is not a competition and that society has a significant role to play in how ‘disabling’ an individual’s impairments are. It is an understanding that this terminology is not only outdated but also negates the complex interaction between a person’s aptitudes, their challenges, their abilities, their disabilities, and their life experience."
She closes, with an important statement that
"It is often pointed out that 'high functioning' is used to deny services and that 'low functioning' is used to deny agency".
Similarly, C.L. Lynch, an author and self-described "socially awkward autist" living in Vancouver, B.C., in her article "Its a Spectrum" Doesn't Mean What You Think, provides her own more expressive visualization of what is meant by "spectrum":
Lynch identifies that,
"all autistic people are affected in one way or another in most or all of these boxes – a rainbow of traits. If you only check one or two boxes, then they don’t call it autism– they call it something else. For example, if you ONLY struggle with communication, then they call that social communication disorder. If you ONLY have problems with body movement/control then that is called dyspraxia or developmental coordination disorder. If you ONLY have sensory processing issues then that is sensory processing disorder. But if you have all of the above and more, they call it autism."
Lynch's article goes on to describe a few comparative examples of combinations of traits, and points to well known individuals from the autistic community, Ido Kedar, Carly Fleischmann and Temple Grandin to show how variation of impact in areas of motor functioning, social awareness and linguistic/visual thinking lead to markedly different neurological differences.
Current demographics (In 2020, the CDC reported)
That approximately 1 in 54 children in the U.S. is diagnosed with an autism spectrum disorder (ASD). 1 in 34 boys identified with autism, while 1 in 144 girls identified with autism, Boys are four times more likely to be diagnosed with autism than girls.
31% of children with ASD have an intellectual disability (intelligence quotient [IQ] <70), 25% are in the borderline range (IQ 71–85) and 44% have IQ scores in the average to above average range (i.e., IQ >85).
Autism affects all ethnic and socioeconomic groups. However, under-represented groups tend to be diagnosed later and less often.
Early intervention affords the best opportunity to support healthy development and deliver benefits across the lifespan. However, most children are still being diagnosed after age 4, though autism can be reliably diagnosed as early as age 2.
There is no medical detection for autism.
The Autism Society recognizes that the prevalence of autism in the United States has risen from 1 in 125 children in 2010 to 1 in 54 in 2020. Realizing this continued increase, the goal for AAM is to further increase awareness about autism signs, symptoms and opportunities.
One-fourth of children with autism are undiagnosed
One-fourth of children under age 8 with autism spectrum disorder -- most of them black or Hispanic -- are not being diagnosed, which is critical for improving quality of life. The findings, published in the journal Autism Research, show that despite growing awareness about autism, it is still under-diagnosed, particularly in black and Hispanic people.
Are Girls With Autism Hiding in Plain Sight?
A growing number of studies suggest that girls with autism, particularly those without intellectual disability, may be hiding in plain sight. They appear to have less severe symptoms than boys and to be better able to mask their social challenges at school. Although that may sound like good news, it can have a downside. According to research by the Interactive Autism Network (another online autism research community) and others, girls with milder forms of autism are diagnosed later than boys, possibly delaying intervention. Some may not be diagnosed at all. And, particularly in the teen years, girls with autism appear to suffer anxiety and depression more commonly than either boys with autism spectrum disorder (ASD) or typically developing girls.
Educating Different Kinds of Minds
Our educational system may be screening out creative people in the fields of art, music, science, and computer programming. Dr. Temple Grandin asks us "What would happen to the great innovators such as Einstein or Michelangelo in today’s educational system?"
Educators need to understand that they have different kinds of minds. Temple Grandin is a professor of animal science and a designer of livestock handling systems. Her equipment designs and animal welfare guidelines have been used around the world. She is also autistic and her visual thinking skills helped her understand animals.
What is autism and why is it difficult to get it diagnosed?
Carrie Beckwith-Fellows is a freelance writer and vlogger from England. She has written for various online publications, including The Huffington Post, Autistica, the National Eating Disorders Association USA and her own blog, where she shares the reality of living with autism and Ehlers Danlos Syndrome, a complex and life-limiting illness. In her talk Carrie shares her own personal journey towards diagnosis of autism: why it took 35 years, and what are the root causes for such invisible diversity?
Advancing Autism Acceptance
Throughout life, society frequently subjects autistic and other neurodivergent people to social and economic alienation, which has had disastrous consequences for the demographics. Jakob, a student with Asperger's Syndrome, an autism spectrum disorder, will share information and experiences derived from his personal life regarding the mistreatment of people similar to him and will share his thoughts and ideas dedicated to strengthening and advancing the Autism Acceptance movement.
My brain isn't broken
In March 2018, 21 year old Tashi Baiguerra received a diagnosis that would finally allow her to understand why she wasn’t always able to make sense of things that everyone else seemed to find straightforward. Through her own powerful journey, she encourages us to see and understand individuals with neurodiversity and other disabilities radically differently. As an actress with "Aspergers Syndrome, an autism spectrum disorder", Tashi Baiguerra is proud to be a voice for the Autism community through her work.
Why is acceptance important?
What is Autism Acceptance Month? Why is acceptance important? Should I support Autism Speaks and "light it up blue"? What is the difference between awareness and acceptance? What can I do to celebrate Autism Acceptance Month? Amythest Schaber talks about these questions in this special episode of Ask an Autistic!
What Women With Autism Want You to Know
When people think of a disease they think of something that is degenerative and that will hurt you and kill you autism is not a disease it is a developmental disability it's about living our best possible lives with this condition.
Reconsidering the Autism Spectrum | Ronit Molko
Ronit takes a critical look at autism and the autism services industry and identifies opportunities for the advancement of services and business. Dr Ronit Molko is a dynamic senior executive and entrepreneur recognized for combining strategic vision and technical expertise to drive business initiatives. In 2001, Dr. Molko cofounded Autism Spectrum Therapies Inc. (AST) in California, which grew into a highly respected, multi-state provider of services for individuals on the autism spectrum.
"When I started working in the industry, ... the goal of services was to provide enough skills and tools to kids so that if you looked at a bunch of kids on the playground they were indistinguishable from their peers. Many companies today still promote this promise of recovery and sell this idea to parents."
"But autism is a developmental disorder, it's lifelong and even though significant gains can be made through intervention, it does not go away..."
"... many autistic adults have said to me in the last year's that I've been interviewing them, 'what gives me the right as a professional, to decide how to cure somebody from something that is core to their identity and how they've known themselves from the time they were born.'
So we really need to be rethinking how we're approaching this... instead of asking what makes kids normal we should be asking what will help this person live a fulfilled life, because who gets to decide what makes a meaningful life."
A growing number of organizations and disability rights advocates now participate in Autism Acceptance Day and Autism Acceptance Month observances, which highlight both social acceptance of Autistic people and the need for appropriate supports to enable full participation in the community. Autistic advocates have taken the lead in bringing about this much-needed cultural shift by working for systems change and by sharing our stories and perspectives, not only during the April events but also throughout the year.
The Autism Society has a variety of resources designed to inform and encourage communities to celebrate differences, and become more inclusive of individuals with autism. The campaign will overlap with World Autism Awareness Day on April 2nd, and continue throughout the month.
Read about the shift from “Autism Awareness Month” to “Autism Acceptance Month” here. You can also visit their Autism Acceptance Month website here.
The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!
Too often, when parents find out their kid is autistic, they receive negative messages from all sides. Many resources available to parents stigmatize autism and talk about it as something to be “overcome,” not as a part of who an autistic child is. At ASAN, we’ve heard from many parents of autisic children who wish they’d had a better resource to learn about autism — one that cuts through myths and misconceptions and explains autism from an autistic perspective. And we’ve heard from many of our autistic community members who wish their families had access to that kind of information when they were growing up. That’s what our new booklet, “Start Here: A Guide for Parents of Autistic Kids” is for!
Welcome to the Autistic Community The book is called Welcome to the Autistic Community. ASAN wrote this book for autistic people who want to learn what being autistic means. They hope it will help you understand autism better, and answer some questions you have about autism.
They also want non-autistic people to read the book. It can show you how to make life better for autistic people.
To reach this goal they have placed the whole book online for free. That way, anyone who wants to learn about autism can read it any time. You can also download the book to read offline, or buy a print copy of the book.
Acceptance Resources
Links for Parents
PTSA and Local Resources