Lisa Jo Rudy is a writer, editor, and autism consultant. She provides consulting and presentations on community inclusion and education for museums, community groups, and parent groups. She developed the website autisminthemuseum.org, a hub of best practices and resources about how to make museums, zoos, aquariums, and other educational settings more inclusive for individuals on the spectrum and their families. This week she shared some of her background with museums, her perspective on their importance, and her mission to make them more accessible to individuals on the spectrum.
The following post was originally published on the blog Life with Aspergers on March 4, 2017. It was written by Gavin Bollard and has been reprinted here with his permission.
He doesn’t look autistic to me…
It’s a phrase that every parent of a child on the autism spectrum dreads. Apparently it’s meant as a compliment but in reality it’s a fairly impressive bit of “multiple insulting“.
Anthony Ianni is a National Motivational Speaker for the Relentless Tour to eradicate bullying, an initiative of the Michigan Department of Civil Rights. Anthony was diagnosed on the spectrum with Pervasive Developmental Disorder at the age of four and struggled with bullying throughout childhood. He rose above the low expectations of doctors and specialists to graduate from Michigan State University and play basketball for Tom Izzo during his time there. He was the first Division 1 Basketball player in NCAA History to be diagnosed with autism. This week Anthony shared some of what he has learned about bullying and autism advocacy.
Jennifer Brozek is an award winning editor/author, and freelance writer. Jennifer is the author of the award winning YA Battletech novel, The Nellus Academy Incident, the Bram Stoker nominated YA novel, Never Let Me Sleep, and Shadowrun novella, Doc Wagon 19. She has also written for the AAA MMO Aion and the award winning videogame, Shadowrun Returns.
This week Jennifer shared her experience as an autistic writer and some of society’s misconceptions about autism.
This New Year let’s make a resolution to spread love and autism acceptance. Are you on board? Here are 5 ways to keep this commitment:
- Follow an autistic blog. Visit our blog reference page for links to several blogs written by autistic people.
- Make a contribution to ASAN. The autistic self advocacy network works to advance public policy to support individuals on the spectrum and improve general autism acceptance all over the world.
- Involve your child in therapy decisions as often as possible. Try to learn about the skills your child wants to develop and show them how to work towards those goals.
- Discuss autism and neurodiversity in a positive light. Discuss autism as a difference rather than a disorder. Emphasize the strengths and weaknesses of ALL people, including those both on and off the spectrum.
- Connect with your local autistic community–visit a talk or other event hosted by or featuring individuals on the spectrum. This is a good way to meet other people in your community and hear the issues they face on a daily basis.
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.
This week I’ve compiled some websites that sell autism acceptance and neurodiversity gear that could make great gifts this holiday season!
Many of these gifts have sayings or slogans on them that promote autism acceptance and challenge the status quo. I’ve included some examples with each link.
“Respect the stim. Celebrate neurodiversity.”
“A world without autism is a world without me!”
“Autism. Different. Not less.”
“People, not puzzles”
“If at first you don’t succeed, perseverate.”
“Neurodiversity is natural.”
“Compliance is not my goal.”
“Just keep stimming.”
“Autism is not a tragedy. Running out of chocolate is. And ignorance. But mostly the chocolate thing.”
“Acceptance is an action.”
“Inclusion is for everyone.”
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:
It’s crucial to acknowledge the voices and opinions of individuals on the spectrum and let their wisdom guide your advocacy approach. Despite our best efforts, parents can sometimes get comfortable in the daily identity of raising a child on the spectrum and forget to constantly reflect on parenting and advocacy approaches. Listening to the autistic community helps us gain our bearings and work productively to help our children develop.
Emma Dalmayne is an Autistic and Autism Advocate and activist from the United Kingdom who speaks out against all Autistic mistreatments. She has published several articles and books aimed at helping individuals on the spectrum, and her advocacy work has been featured in the Guardian. Emma is also a home educator to her children who are also on the Autistic spectrum.
This week Emma shared some of her background growing up on the autism spectrum, her feelings about receiving a late diagnosis, and how she advocates for others on the spectrum today.
What led to your receiving a diagnosis?
After seeing so many similarities between myself and my youngest son I decided to sit down and really think and list all the things that suggested to me that I might be a spectrumite.
I thought back to the alienation I felt in my school days, the way that others just couldn’t understand why I could get hysterically upset over someone stepping on an ant or crushing a snail.
The fact that as much as I would want to make friends I would find it impossibly hard. Understanding the neurotypical mindset was and still is near impossible for me and the love they have of socialising leaves me floored.
The sensory seeking habits I’d developed over the years to help me cope and regulate had become so much a part of me that it was hard to differentiate what was what. I’d always (and still do) bite my mouth to calm myself, and I will always have beads or something to fiddle with in my hand as I shop to block out the external stimulation.
I went to my GP and handed the list over, explaining why I believed I needed to be referred, and I was immediately. Within six months I was diagnosed with Aspergers and Synesthesia, it was a day that I believe set me free.
How did you feel about being diagnosed?
I had always looked for someone, that special someone that would love and care for me, see me through anything….and that day I found that person.
It was me…
I wasn’t mad, odd or a misfit…I am an autistic woman and the person who had always been there, who had brought me through, cared for my children and rallied against a world that seems at war against my senses and ideals.
I’d coped with so much, never knowing others didn’t see things the same as me, never understanding why they didn’t.
I am immensely proud of myself that I have come this far.
What challenges did you experience as a result of not having a diagnosis when you were younger?
I believe if I had been diagnosed when I was younger it would have held me back in some ways. I am forty, and I was diagnosed at 37.
My recollection of my childhood leads me to believe in some ways it would have been a good thing, more support possibly? But I was and am a day dreamer and like things my own ways (many Autistic’s do)….would I have been forced to comply? Make eye contact which burns and be made to cast away my fantasy world I had weaved around myself as a protective shield?
I was bullied consistently, maybe some support would have helped with that? Who knows?
How early were your children diagnosed?
My youngest son was diagnosed at age four. My eldest son and seventeen-year-old daughter have both been referred to be assessed as has my youngest who is three.
What advantages do you have over neurotypicals in supporting your children on the spectrum as an autistic adult?
I believe any parent, be it neurotypical or autistic, has the ability to be an amazing and caring influence in their child’s life, but I will say that if my youngest is overwhelmed because the Tarmac suddenly changed to pavement, I can empathise.
I can understand fully why one of my children sensory seeks with feces as I used to when I was younger…it’s all about tactile feedback, but, moreover, it’s about control, the one thing they can control when all else to them is chaos.
I know I can put myself in their shoes as I was them.
What mistakes do autism advocates make?
I have commonly seen advocates alienate neurotypical parents by attacking them on their choices for their children.
We will get nowhere like that. They need to be educated and given the choice to listen to us willingly.
What is one thing you wish your parents (or teachers) would have done differently when you were young?
I wish so much that just one teacher would have asked ‘why?’ Just why did I smash up a classroom? Why did I pass so well in every English assignment yet fail so dismally in math? And just one…just one to help with the bullying I experienced would have been great.
What’s your opinion on the neurodiversity movement? How can parents take advantage of its current popularity?
The neurodiversity movement is getting stronger, but we need more.
We need more Autistics standing up and campaigning against the so called ‘cure’ treatments that are being pushed at parents who know no better.
The parents who have been led to believe that in order for their children to thrive they must ‘fit in’. They must do ABA, they must be the same as their neurotypical peers.
We need these parents to look to strong autistic people to realise that their children are not damaged nor broken, not ill nor injured.
They are autistic not ‘with autism,’ and as the movement gets stronger and gains momentum, I believe more will take note.
How are the books you’ve written about autism different from others that are available today? Or what do they contribute to the public conversation about autism?
My books are different to others on the market in one way…’It’s An Autism Thing’ is from my perspective and gives accounts of my experiences of Meltdowns, Sensory overloads and Sensory needs.
I wrote it to help people who had no knowledge of how an autistic person feels step over the fence into our shoes.
Susie Spins is from the angle that Susie, who is autistic and pre verbal, is not the one who’s different in her school. The other children are, but that does not make them less.
It’s a little book to educate children that although a classmate may communicate in a different way, they still have hopes, dreams, and opinions; they are still a worthy friend; and they are still someone to learn from.