We’d like to introduce you to Autism Goggles, a website and blog dedicated to helping people understand what it’s like to have Autism. Created by Maxine Share, and her son Daniel Share-Strom, this site is an outgrowth of Maxine’s work as a special education advocate. She began this career while trying to help Daniel get the help he needed in school.
Put On Your Autism Goggles
The best way to understand any situation is to talk to someone who has experience with it. In order to understand what it’s like to have Autism, you should hear from someone who has Autism. Both Daniel and Maxine have Autism, although Maxine didn’t get her diagnosis until later in life. Through their blog and their advocacy work, they encourage ‘neuro-typicals’ to “put on your ‘Autism Goggles’ to understand the autistic mind.
There’s Much More Beneath The Surface
What you will learn is that people with Autism don’t want a “cure” – they just want acceptance and understanding of the way they are. Autism is not a disease. It is not a disability. Browsing Autism Goggles, you’ll learn it’s simply a different kind of social interaction and thinking. You’ll realize while people with Autism may have difficulties in communication, that doesn’t mean they don’t have anything to say.
Part 2. Daniel Share-Strom
For SPC Episode 69, we talked to Maxine Share, who started Autism Goggles as an outgrowth of her advocacy work that began with her son.
In Part 2 of our interview, we talk to Maxine Share’s son, Daniel Share-Strom. His own struggles with Autism and Aspberger’s Syndrome were the basis of Maxine’s advocacy for parents. From his bio on the Website: “Daniel is a writer, motivational speaker, workshop facilitator, and co-founder of Autism Goggles, a social initiative determined to ‘reframe understanding of autism’ to focus on ability and strengths.
“Diagnosed with autism at a young age, Daniel has been moving audiences with his self-awareness, poignant insight, and humour for nearly 15 years. He does this with full-day workshops and speeches which help parent groups, universities, autism organizations, workplaces, and health care professionals to understand the many features and traits of autism using plain language and practical examples. Daniel is committed to equality, fairness, and social justice for all people as he works to shift society toward acceptance and understanding of neurodiversity. He speaks up and speaks out for those who have not yet found their voice.”
We’d like to introduce you to Autism Goggles, a website and blog dedicated to helping people understand what it’s like to have Autism. Created by Maxine Share, and her son Daniel Share-Strom, this site is an outgrowth of Maxine’s work as a special education advocate. She began this career while trying to help Daniel get the help he needed in school.
Put On Your Autism Goggles
The best way to understand any situation is to talk to someone who has experience with it. And the best way to understand what it’s like to have Autism, is to hear from someone who has Autism. Both Daniel and Maxine have Autism, although Maxine didn’t get her diagnosis until later in life. Through their blog and their advocacy work, they encourage ‘neuro-typicals’ to “put on your ‘Autism Goggles’ to understand the autistic mind.
There’s Much More Beneath The Surface
What you will learn is that people with Autism don’t want a “cure” – they just want acceptance and understanding of the way they are. Autism is not a disease. Autism is not a disability. Through Autism Goggles, you’ll learn it’s simply a different kind of social interaction and thinking. You’ll realize while people with Autism may have difficulties in communication, that doesn’t mean they don’t have anything to say.
Part 1 – Maxine Share
We’ve divided this interview into to separate episodes. In Part 1, you’ll hear from Maxine Share, as she tells her story of how she became a special education advocate in her home of York, Ontario, Canada and the work she does with Autism Goggles. Part 2 will feature our interview with her son, Daniel Share-Strom.
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This episode could probably be called Parent Story number four, but I’ve chosen to call it When The Nightmare Happens. Because this is the kind of parent story that you don’t want to happen.
Meet Kiri Salazar.
Kiri Salazar is a person that my wife Sarah and I met here in the Grand Rapids Michigan area. She is a widow and her son Alexei has non verbal autism. Like many people she has a blog, where she writes about her life and her son’s challenges. This past November, 2018, Kiri shared a story about an incident with her son that was about as frightening and stressful as it can get. Fortunately, as you will hear, the incident eventually turned out fairly well. But I felt it should be shared, which is why I invited her to be on this episode, and she agreed to do it.
What Would You Do?
I should warn you that Kiri’s story is difficult to listen to. But her hope is that by sharing it she can perhaps help other families who may be faced with a similar situation. Our greater hope is that some officials in government, who are in a position do something about the challenges we talk about, can help to remedy these situations by coming up with ways to provide better support to families.
Kiri’s original blog post about her son’s incident: With Prejudice
Reminder
Please help spread the word about Special Parents Confidential. Use the social media buttons located on this page to post our podcast to all of your favorite social media platforms.
A great way to get in touch with us and comment about episodes you’ve listen to is on our Facebook Page. Please “like” the page and tell us what you think. You can even suggest topics for upcoming episodes and ask questions about previous shows.
Special Parents Confidential is now available onSpotify! Just follow the link here to subscribe to our podcast for free.
A few days ago I came across the above video on Facebook called Amazing Things Happen, It does an incredible job of explaining Autism in a way that kids could understand.
Amazing Things Happen, since it was posted online, has had over 5 million views. It’s been translated into 28 subtitled languages, and 10 fully dubbed versions. I wanted to know more about the person who created the video, Alex Amelines, and how he was able to create such a well-done piece.
“I worked in Editorial design for 5 years. Back in Colombia. Then I moved to the United Kingdom to do an animation course after which I ended up settling up in. Both in the animation field and in the UK.
“I now work as an independent animator and director, my animations have gone in all directions: television, exhibitions, installations, games, films, planes, etc. In 2012 I established Studio Tinto in an attempt to become rich and famous.
“I’ve achieved neither.”
This wasn’t quite all the information I was looking for, so I sent Alex a message. He replied that his preference was to not do a podcast interview because he was worried that his accent was a little to hard to understand. But he would be happy to explain the process of how he came up with the animation.
By the way – Alex mentions the term SENCO, which in the U.K. stands for Special Education Needs Coordinator.
The Amazing Things Happen Background Story.
“I must warn you that my story is not an exciting one and that I’d prefer the focus were on the animation rather than me or my family but I’ll try to tell you what drove me anyway:
“A few years ago, my son’s school organised an assembly to help explain autism to the children, which struck me as a wonderful idea. The talk was very interesting and the local expert who led it obviously knew her stuff but it was limited by a lack of clear, visual materials. The children got most excited at a slide of Lego toys and enjoyed a scene from the animated series Arthur, where Arthur meets a boy who doesn’t make eye contact and only wants to talk about trains.
“My immediate thought was, this could all be an animation – and might even retain the children’s interest better that way. I’ve always loved working on creative side projects to distract me from client work and thought this would be both fun and potentially useful for the school. Perhaps even a few more schools, locally. I had no big plans beyond that.
“I met with the school’s SENCO and told her my idea, which she as was excited as I was. I had to do a lot of research, a lot of books, a lot of TED talks, blogs, articles, etc. I met with the SENCO several times to discuss my progress. The hardest part was to condense the script into 5 minutes, as English is my second language, I’m not a trained writer and most importantly, because there is so much to say about autism! The spectrum is so unforgivingly vast it seemed impossible keep it all in, everything seemed so relevant. But I knew from experience that this could only work if it was short enough to be feasible to finish on my own and also to retain the attention of small children.
“My prerogatives were: keep it short, only positive words, keep the language simple.
“It took me the best part of a year to get to a point that I thought I can start animating. But before doing so I ran it past the SENCO and reached out to Prof. Tony Attwood, a leading expert on autism who was really generous with his time and knowledge. He checked the script and storyboards and made some adjustments to the language. So I felt I had a proper seal of approval, which cheered me on.
“As I moved on from writing to animation things got easier. I was in my element. I developed the characters, created the artwork, did some research for the look of the animation. The backgrounds and colours were inspired by old 1940s UPA animations, which I’ve always loved.
“For the music I asked London based musician Chris Harrington, he has always supported my animated projects with beautiful original compositions. The narrator is a Scottish actor called David Gant (Braveheart, Sherlock, Final Fantasy VII), who I’d met while working on the visual effects of feature film, The Fitzroy. He has a beautiful booming voice that is both authoritative and warm. The kind of voice that inspires trust. So I reached out and David kindly agreed to do it pro bono. Mike Avgeros also generously offered to let us use his recording studio for an hour on a weekend.
“We released Amazing Things Happen in time for autism awareness month, then something amazing really did happen. By the second day the film had been seen thousands of times. I was over the moon with that, but after two weeks it was 5 million. It was all very surreal and very moving, as I got many beautiful messages of thanks from parents, teachers and – most importantly to me – from people who themselves have autism. So it has been very rewarding, more than I had ever imagined.
“Right nowAmazing Things Happen has subtitles in 28 languages, it has been dubbed into 10 languages, apart from the French and German narrations, everything has been from contributions from people who’ve liked the project. And there are more foreign narrations coming, the former director for the Icelandic Autism Society has offered to do an Icelandic version, the Executive Director of OC Autism wants to do Vietnamese, Chinese, Korean, Tagalog and Hindu, there are offers to do Finnish, Norwegian, Portuguese, Arabic, Hebrew, Estonian, Japanese and Malay. And an animation studio in Bangladesh, who are connected with the Prime Minister’s daughter are recreating the animation with Asian themes.
“From the reaction it’s clear that there is an urgent need for this kind of material. I would also love to do more, so I am considering a crowd-funding campaign to develop a series in which children could tell their own story, describing their autism to us. Raising funds this way would mean I could work on this full time, rather than finding a spare hour here and there around my usual client work. There’s so much more to be said on the subject. And I figure that the only way to paint a portrait of something that has a million faces, is to paint as many pictures as possible!”
Additionally, Alex wrote the following to me in a separate email:
“In relation to how I visualised it, I think the fact that so many autistic people have felt it is an accurate depiction is sort of a fluke, I mean I did lots of research but I knew it wasn’t going to be accurate for everyone as the spectrum is so vast, so it felt like taking a gamble, I tried to be generic (too much detail in some parts, too little detail in others, too bright, too loud), while showing things that Neuro-Typical children can relate to, so they can put themselves in their shoes. Professor Tony Attwood came up with the idea of removing people’s faces to convey the fact that they can’t read people’s expressions, which I think is a great touch, even if it’s not obvious to people who see it, it is there.
“It helped me a lot that I am a visual person, for instance I can’t remember a phone number but I can remember the pattern my finger draws as it types. Even my mental associations are visual, when I was reading “The Reason I Jump” as part of my research at some point it evoked a scene from The Man of Steel, were Superman as a child starts discovered his powers (well I say discovered but it looked more like they ran him over, the scene is terrifying), suddenly he can hear everyone at the same time, see everything too clear, too bright, too much, that’s how I imagine sensory overload. Unfortunately autistic people don’t have superman’s ability to control this, there’s no filter or off button.”
My thanks toAlex Amelines for offering this explanation of his work.
Amazing Things Happen is something everyone should watch. I highly recommend you share this video with everyone you know!
Virtually everyone has heard of sensory overload, and sensory issues. People who have problems with loud noises, large crowded areas, tastes, textures, strong smells, bright lights, the list goes on.
Not A Symptom of Something Else.
For decades sensory issues were simply considered a side-effect of whatever the more prevalent disorder was inhibiting the child, whether Autism Spectrum Disorder, ADHD, Dyslexia, Multiple Sclerosis, and other disorders. However medical research has proven that this is a separate disorder, called Sensory Processing Disorder. And there is now a push to have it recognized by the Diagnostic and Statistical Manual of Mental Disorders – known as DSM – which is the official medical reference for physicians.
SPD Parent Zone.
My guest for this episode has first hand knowledge of Sensory Processing Disorder. Kelly Jurecko is the President and Co-Founder of SPD Parent Zone, a non-profit organization that offers a website that is full of reliable and credible information on Sensory Processing Disorder. She also hosts a blog and a podcast on the site where she posts articles and interviews experts on SPD and keeps people updated on the latest information.
If your child is having any kind of sensory issues, SPD Parent Zone is a website you need to bookmark and search.
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In 2015, a young woman named Alix Generous gave a Ted Talk speech that has subsequently had over 14 million views. The speech was entitled, “How I learned to communicate my inner life with Aspberger’s”, and in it Alix talks about her amazing life and how she has achieved so much.
Living With Aspberger’s Syndrome
As a child, Alix Generous was misdiagnosed with the wrong disorder and had a great deal of difficulties. It wasn’t until the age of 11 that she was finally correctly diagnosed with Aspberger’s Syndrome, a high functioning form of Autism. Since then she has made amazing progress.
At 17, she attended the College of Charleston, where she studied Psychology, Molecular Biology, and Neuroscience. When she was 19, she wrote a paper on Coral Reefs and Microbiology that won the 2012 Citizen Science Biodiversity Competition, and she subsequently was invited to speak at the United Nations on her research. Currently, Alix is working as a Neuroscientist, author, and tech consultant, and she gives speeches around the world on issues concerning science, mental health, STEM (Science Technology Engineering and Math) and women.
Alix Generous joins us on Skype for this episode of Special Parents Confidential to talk about her life and her work, as well as sharing insights into how people with Autism can be helped and supported.
She also discusses how parents, families, and society can benefit through understanding and acceptance of people with Autism and Aspberger’s Syndrome, as well as all people with any physical or developmental disabilities. As she says on the main page of her website:
“This world is in desperate need of creative and intellectual minds to solve complex problems. But before we can do that, we need to build a culture that accepts mental diversity.”
