Vera Didenko is an autistic blogger recognized for contributions in both radio broadcasting, from 2001 to 2008, and federal government defense accounting, from 2008 to 2013. Vera blogs about a variety of life issues relevant to individuals on the spectrum and the neurotypicals in their lives at This, That, and Vera.
This is a reposting originally published on this blog last year.
April is autism awareness month and autism acceptance month. There are a variety of different ways people can celebrate this designation. I’ve written an earlier post on autism acceptance, so I thought I would take some time here to aggregate information available from people on the spectrum regarding their views on autism awareness month.
Bob Yamtich is a Marriage and Family Therapist specializing in Nonviolent Communication coaching and neurodiversity Bob works as an independent consultant and therapeutic coach. He blogs at Connecting with the Neurodiverse. This week he discusses his personal experiences on the spectrum and offers advice for how parents and educators can connect with others like him.
The Silent Wave is a blogger and integrative medicine doctor. She blogs about life “through one female Asperger’s lens” and advocates for the acceptance of all people on the spectrum. Last week she shared some of her personal experiences growing up on the spectrum. This week “The Silent Wave” discusses ways parents can help their child grow to develop a positive autistic identity.
Dinah Murray is a British researcher, speaker, and campaigner for people with varied learning disabilities, including autism. Her work has been published in the journals Autism, Good Autism Practice, as well as a number of books and online publications. She is an international public speaker on autism. Her research interests include medication and quality of life impact, IT for nonverbal individuals, and the ethics of autism research.
This week Dinah shared with us some of her most meaningful research findings as well as how to promote a positive autistic identity.
It’s the time of year for formal thanksgivings, so I decided to compose a few notes about my autistic son and my gratefulness to have him in my life. The following is a list of reasons why I am thankful for my son as well as the presence of autism in our society.
- Learning about autism and autism advocacy has helped me understand the life experiences and behaviors of my brother, who is also on the spectrum. The role/experience of a sibling is different than that of a parent to a child on the spectrum, and I am grateful for both of these experiences which help me relate to and connect with a variety of different people in my life, including my siblings, parents, and my neurotypical children.
- Learning about autism and disability has offered our family an intimately rich and diverse life experience not shared by everyone. My son’s diagnosis and the subsequent research I’ve conducted since have helped me embrace and appreciate the value of life’s differences, not merely tolerate them.
- My son challenges me to learn more about the world through his special interests.
- His “perseverations” (or work ethic) at a young age with letters and numbers led to early reading skills and fantastic penmanship. He is also diagnosed with ataxic cerebral palsy, so balance and coordination are challenging for him, which makes these skills all the more impressive.
- The neurodiversity movement is a nice extension of the disability rights movement, which has challenged the standard of normalcy and welcomed all kinds of abilities and societal contributions.
- A unique way of thinking and differing approaches to solving problems helps grow a society. Autistic people certainly offer that.
- I’m grateful for my autistic son for the exact same reasons I am grateful for my other neurotypical children. I’m grateful for their humanity and all the wonderful things that accompany it–hopes, fears, love, and potential.
But enough about me. Here are some other articles written by people on the spectrum about autism appreciation and pride:
Lana Grant is a specialist advisor and advocate for people with autism and their families. Lana has worked within the field of autism for nearly twenty years. Lana specializes in autism and females, particularly pregnancy and motherhood. Her book “From Here To Maternity, pregnancy and motherhood on the Autism Spectrum” was published in March 2015 by Jessica Kingsley publishers and is the only book that focuses on this issue. Lana is a trained birth partner (doula) specializing in supporting pregnant women on the autism spectrum and their partners. Lana has recently contributed to the Scottish Autism Right Click Women and Girls Programme. She is a passionate advocate for female empowerment and speaks for the NAS and other organizations about female issues. She also has a diagnosis of Asperger syndrome.
This week Lana shared with me some of her background and advocacy work for mothers on the spectrum.
There is a tendency for people on the spectrum to be portrayed as burdens to their families in the media. Sometimes this is the angle of the journalist reporting a story, and other times, it comes from the voice of a parent. Sometimes this narrative can even attempt to justify parent or caregiver murder of someone on the spectrum. Unfortunately, this portrayal has damaged public perception of autistic people, and many on the spectrum have spoken out against it.
1. Read a blog authored by an autistic person.
This is an important step in hearing the voices of people on the spectrum. You will see how they are self advocating and what you are doing to either help or hurt their cause. I guarantee you will learn something.
2. Change your language.
The language of advocacy can have important consequences on your overall message. For example, learn about the difference between person-first and identity-first language and how the autistic people in your life choose to identify. Also be careful about using words like “cure” or “fix” or any language that only references what is negative about autism.
3. Purchase autism neurodiversity gear.
Sometimes a spark for change begins with a simple conversation. An easy and unobtrusive way to encourage conversation is by sporting neurodiversity gear. The colorful autism puzzle piece symbol is too vague (and even offensive to some) to promote autism acceptance. Instead, try finding promotional items specifically mentioning neurodiversity or autism acceptance.
4. Learn more about stimming and why it’s important.
Many parents and therapists aim to correct harmless stims in an effort to make an autistic person appear more “normal.” But these stims serve an important purpose in helping people on the spectrum regulate sensory input and organize functional behavior. Discouraging stims is often counterproductive to teaching desirable behaviors.
5. Visit autismacceptancemonth.com and sign the pledge for autism acceptance.
The pledge asks people to advocate only in panels, for organizations, and at events that meaningfully involve autistic people.
6. Read The Spoon Theory.
This article by Christine Miserandino helps depict the daily fatigue disabled people experience. This portrayal helps nondisabled people better understand and advocate for the needs of those on the spectrum.
7. Read the Loud Hands: Autistic People Speaking anthology.
This anthology will open your eyes and ears to the voices of people everywhere on the spectrum. It is written entirely by autistic people and discusses a variety of different advocacy topics.
8. Visit the ASAN website and learn more about their mission.
ASAN is an organization aimed to improve disability rights related to autism. They offer advocacy resources to improve personal independence as well as advocate for policy changes on a national stage. Their motto is “Nothing About Us, Without Us!”
This is ASAN’s first published ebook. You’ll hear essays focused on autism acceptance and respecting the dignity and voice of everyone on the spectrum.
10. Review the resources for parents at autismacceptancemonth.com
This website has loads of resources neatly organized into categories for parents, self-advocates, educators, and employers. Acceptance begins with reading and understanding more about the experiences, capabilities, and desires of those on the spectrum. This website has a variety of resources to serve this end.
Individuals on the spectrum shouldn’t have to fight to survive and function each day. I’ve heard individuals on the spectrum often speak about the exhaustion of managing their schedules each day because they are trying to live in a world that isn’t always aware of and sensitive to their needs. Jodie Van de Wetering, an autistic writer from Australia, explained this to me once, saying,
“It is over and above what a neurotypical person would need, and it is disheartening sometimes that I need three timers, a whiteboard and endless reminders and checklists to achieve what other people seem to be able to do with nothing more than a slim diary. But it’s not about doing what other people do, or looking sleek and elegant. It’s about getting the job done, and this is what I need to do that.”
This reminded me of how my son fought for survival after being born 3 months early and the subsequent obstacles he has faced with a diagnosis of cerebral palsy and autism. This week I wanted to share a personal essay I wrote almost 4 years ago about how my son had been putting up a daily fight to survive and then develop after his extreme premature birth. He hadn’t yet been diagnosed with autism, but the specialists were already swarming with predictions about his future. Writing this was one of the first steps to understanding the variety of different ways autistic people experience the world and beginning to work towards supporting their needs and advocating for autism acceptance.