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.
Ms. Simone is the author of 6 books, founder and creator of www.Help4aspergers.com, and the founder and President of The International Aspergirl® Society. Credited with coining the term “Aspergirls”, Simone, along with Liane Holliday Willey, helped bring female Aspergers to the forefront of cultural awareness. She created the first “Table of Female AS Traits” now widely used by doctors everywhere to help identify AS in women and girls.
Simone gives presentations and webinars for professional and personal development and is also a composer, musician, recording artist and engineer, and actor. This week Ms. Simone shared with us her perspective on autism, dating, and her work with the International Aspergirl Society.
Megan Amodeo is a writer, autistic self-advocate, and stay-at-home mother to three, 2 of whom are on the spectrum. Prior to staying at home with her children, she worked in special education. She currently writes for geekclubbooks as an “Autism Insider.” This week she shared her experience receiving a late diagnosis and the joys of being an autistic mom. » Read more
Jeanette Purkis is an Autistic author, public speaker, and self-advocate. Jeanette has worked in the Australian Public Service since 2007 and has a Masters degree in Fine Arts. She is the author of three books on Autism. Jeanette has given many presentations including at TEDxCanberra 2013 and presenting alongside Professor Temple Grandin and artist Tim Sharp in Melbourne in 2015. Jeanette facilitates an Autism women’s group and is the 2016 ACT Volunteer of the Year. This week Jeanette discussed some of her background and advocacy work and how to help individuals on the spectrum develop a positive autistic identity.
Caroline Hearst is an autistic autism trainer and consultant from the U.K. who runs post-diagnostic peer support groups for autistic adults. She runs Autism Matters and is the director of AutAngel, a community interest company run by and for autistic people. She also blogs about her autism perspectives at http://www.autismmatters.org.uk/blog.
This week Caroline shared with me her perspective on the neurodiversity movement and autism advocacy both in the United States and the United Kingdom. This interview was conducted via Skype and is transcribed below.
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.
Ron Sandison works full time in the medical field and is a professor of theology at Destiny School of Ministry. He is an advisory board member of Autism Society Faith Initiative of Autism Society of American. He recently published the book A Parent’s Guide to Autism: Practical Advice. Biblical Wisdom.
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.
The Autistic Self Advocacy Network is an excellent place to begin learning about autism advocacy and how you can help your young or adult child develop self-advocacy skills. They have a variety of different books, articles, and videos celebrating autism acceptance and promoting social change. Check out their Resource Library for a comprehensive list of resources.