Something to Embrace: Autism Acceptance with Princess Aspien

April 2 is World Autism Awareness Day, a United Nations initiative; however, many now recognise all of April as Autism Acceptance Month. It’s a time to learn more about autism and to promote acceptance of autistic people for who they are. And in its truest form autism acceptance means listening to and valuing the ‘real autism experts’ – autistic people.
Chloe Hayden is a teenager from regional Victoria – a somewhat unusual pick at first glance for an Inner West Mums piece. But take a moment to read Chloe’s powerful words and you’ll find they impact deeply, wherever you’re from.
At thirteen years of age Chloe was diagnosed with Asperger’s syndrome – known these days as autism spectrum disorder. Now, nineteen years old, Chloe spends her time encouraging and empowering young autistic people. Through a character Chloe developed, Princess Aspien, she shares her passions, experiences, achievements, and the challenges she faces with an ever-increasing fan base. She is also an ambassador for several organisations that support young autistic people. In fact, she has become a wonderful role model, not just for young autistic girls, but for the wider community too.
You can enjoy reading Chloe’s story below. And don’t miss the excellent tips at the end of the piece from Inner West Mum and parent ally Stephanie on forming a network to support and empower your autistic child.
 
Chloe Hayden’s story
Can you tell us a little about yourself?
I’m nineteen years old and I live with my family of six and my many, many animals in a small country town in Victoria. I’m so, so passionate about horses, and own four of them and train others. I’m an animal rights advocate. I adore performing, and aspire to make a living out of singing and acting. My favourite things are animals, painting, photography, Disney, boy bands and creative writing.
 
How does Princess Aspien fit into the picture?
When I was first diagnosed with Asperger’s at the age of thirteen, I had no one to look up to. I felt alone, and worried, and scared, because there was no one out there like me. As I grew up, I realised that there were millions of other little girls and boys going through the same thing. I felt that someone needed to be there for them and I came to the conclusion that if no one else was going to do it, then it was my job.

 
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You’re quite a role model for young girls. How does that feel?
It’s still so bizarre to hear that. I never once for a second believed that I’d be in the position that I’m in now. It’s really exciting to know that young girls are looking up to me, and something that I don’t take lightly at all.
 
What do you want young girls – and the wider public – to understand about autism?
Autism doesn’t define you. Autism is a part of you, just like my love for horses, my brown hair, green eyes and hatred for red food are all parts of me. Autism isn’t something to be scared of: it’s something to embrace, and to celebrate. Your differences don’t make you less. And it’s so important for young girls to know this.
I think girls especially are forced into being a certain way, especially through their teen years. That’s straining on anyone, but when you throw a little girl into that mix who doesn’t work the same way as others in society, who was born to stand out, it can be really, really crushing. It’s so important that these kids understand that they are beautiful, and wonderful, and amazing.
 
What was your support network like when you were growing up?
I didn’t have any support through my younger years, simply because no one knew I had autism. My parents called me their ‘quirky genius child’, and the other kids called me a misfit.  School was a nightmare for me, and I spent most of the day locked in a bathroom stall.
It wasn’t until Year Eight when I was diagnosed that I started receiving the support I needed. I was homeschooled, and had school programs adjusted to my learning needs, and I started getting involved in support groups like Treehouse Young Adults, which is an awesome group for people on the autism spectrum. There’s so many of these groups starting to come out now for people of all ages, which I think is amazing, as it gives people an opportunity to meet like-minded individuals in a safe, non-judgemental environment.
 
You recently won a youth disability award (in the Geelong Awards for People with a Disability 2017). How did it feel to win that award?
Insane. Like, literally insane. I cried hard enough for all of Australia when my name got called! I don’t really know why it was so emotional for me. Perhaps because I was told by kids and teachers when I was younger that I wouldn’t amount to anything, and this kind of validated me, proved a point that I didn’t know I had to prove. It’s just so exciting that what I’m doing and what I’m cheering for and what I’m spending my life working on is considered important enough by the wider community to receive recognition. I don’t see it as ‘Chloe Hayden won an award’, I see it as ‘Autism Awareness is becoming important enough to win an award’, and that’s really cool.
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Tell me about your Princess Aspien communication cards.
I’ve had a couple of incidents while travelling to uni that involved me seizing up and being unable to speak when faced with scary situations. I decided to create an ID card with my basic information and my parents’ phone numbers on them, so if that ever happened I could whip the card out.
When I shared my card with others, I started receiving messages from people asking for solutions for their kids’ (or even their own) struggles in similar situations, and so I created these communication cards. In challenging, difficult and scary situations, sometimes autistic kids find it hard to communicate. With these cards, it’s so easy to find the card that we need, pull it out and hand it to who ever needs to see it.
I spent ages making sure the cards were perfect – ensuring that the font was big and bold, and that the photos were bright and colourful, and easy enough so kids who may not be able to read yet could understand what the cards were saying. It’s super exciting to see how much they’ve helped people already.
 
What’s on the horizon for you?
This year I’m planning on travelling and giving talks to more groups and conferences, and basically just continuing to spread the message of encouragement, education and empowerment in the same way that I’ve always done! I’m also starting to work with a couple of big companies and organisations, which is really exciting. I’m going to create more things in Princess Aspien’s line-up too, including a children’s book, which is absolutely surreal!
There’s a lot of things happening, but nothing’s really planned. None of this has been. I’m taking each day as it comes … It seems to work for me!


Inner West Mum and parent ally Stephanie’s tips for forming a network of support and empowerment

Inner West Mum and parent ally Stephanie says, of her own journey of autism acceptance: ‘As a parent of an autistic child, my whole world has opened up. I wish everyone could accept autistic people for who they are. The fact is, as a society we need people who see the world differently. The more that others appreciate autistic people, then the more they will pass that on.’
For a parent wishing to form a network of empowerment for their autistic child, Stephanie offers these tips:

  • Listen to autistic people. ‘They are the ones who know autism best,’ says Stephanie. Two of Stephanie’s favourite self-advocates are Amy Sequenzia and Amythest Schaber, who has an outstanding video blog series called Ask an Autistic.
  • Find your tribe. Be very discerning about any parent groups you join. Seek out small parent groups, especially those with autistic parents, that celebrate difference and strive to understand and support their children. ‘Don’t be afraid to leave any groups that do not reflect a respectful view of autistic people,’ says Stephanie. ‘Some of the large groups in particular are alligator pits!’
  • Be equally selective about any parent blogs that you follow. One of Stephanie’s favourites is Diary of a Mom, which always reflects a respectful view of autistic people.
  • Connect with families with autistic children. In surrounding yourself with autistic people, your child will grow to understand they are not alone but rather one of many.
  • One way in which you can connect with the autistic community is to participate in events that aim to promote access and inclusion, such as autism-friendly screenings and live performances or Access Taronga days, when autistic guests together with their families can enjoy early access to the Taronga Zoo. Earlier this year Stephanie’s family joined the Surfers Healing Australia event at Manly Beach: ‘the best day ever’, according to her son. The Yellow Ladybugs advocacy group also holds events across Australia for autistic girls and women.
  • Conferences are another great way to connect with the autistic community. In 2016 Stephanie attended the Victorian Autism Conference at which she listened to, and met, many autistic teens and adults. ‘I came out on such a high,’ says Stephanie. ‘It was great to see the accommodations made to allow the autistic participants to be comfortable. It really was acceptance in action.’ She also saw acclaimed author Steve Silberman speak at the conference: ‘NeuroTribes is essential reading,’ says Stephanie.
  • Follow The I CAN Network, an organisation that empowers people on the autism spectrum with an ‘I CAN’ attitude. It’s Australia’s first social enterprise founded by autistic people.

If you wish to read more about autism, a fabulous place to start is the Autism Acceptance Month site, which provides tailored resources for self-advocates, parents, educators and employers.
 
All images supplied by Chloe Hayden
You can find Chloe at:
www.princessaspien.com
www.facebook.com/PrincessAspien/?fref=ts

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  • […] On Tuesday 1 May 2018, Inner West Mums hosted a Facebook Live discussion within the closed group, called Embracing Autism, shining a positive light on Autism. The discussion panel featured four Inner West Mums – Melanie, Kristen, Sharon and Ginny – who are committed to shifting the way we all think about Autism from a traditional deficits-based focus towards a strengths-based view and a place of genuine acceptance. The discussion was led by a prominent local advocate, Melanie, who has lived experience of being Autistic. ‘Neurodiversity is a fact,’ said Mel. ‘All neurodiversity asks us to think about is the fact that we have diversity of brains … We want the diversity of brains. That’s what makes cultures and societies rich and empowered and takes us forward … The neurodiversity paradigm talks about the fact that that is okay, that it’s a naturally occurring part of diversity that we all have different brains. There isn’t one right way of processing or thinking … and that’s vital.’ The conversation covered the neurodiversity paradigm, the diversity of the Autism spectrum, two families’ contrasting diagnosis and acceptance journeys, Autistic identity and the benefits of connecting and ways to connect with the Autistic community. A theme which came up throughout the discussion was the importance of listening to and valuing Autistic individuals. In this vein, Kristen had this to say: ‘Add Autistic voices to your life … There’s so much you can learn from people who actually have that lived experience.’ In her concluding remarks Melanie had a powerful message for the audience: ‘Don’t be afraid of Autism; it’s not something to be afraid of. Embrace it as a vital difference that we need to make our society diverse and wonderful and rich … We see the world in different ways, but they are different and exciting ways … I have a vision of a world in which Autistics are valued and empowered because of their Autism and not despite it. I would love it if other people were to join me in the movement to create that.’ Kristen added: ‘Our children are listening to how we talk about them and how we talk about Autism and being Autistic … They internalise that. So use your words and mindsets powerfully.’ The discussion received a warm response from the audience, with several commenting that it was very informative. We very much hope that it goes some way to changing the way in which our community perceives Autism.   Embracing Autism: A Few Resources to Help You Learn More Panel member Kristen has kindly provided the following extensive list of resources for anyone wishing to learn more about Autism acceptance. Unless otherwise indicated, all resources were authored/produced by Autistic people. Overviews of Autism ‘What Is Autism?’ by Amythest Schaber (from the wonderful YouTube series ‘Ask An Autistic’) ‘What Is Autism?’ by Nick Walker ‘How My Unstoppable Mother Proved the Experts Wrong’, by Chris Varney, founder and CEO of The I CAN Network NeuroTribes: The History of Autism and the Future of Neurodiversity by Steve Silberman. This critically acclaimed, best-selling, award-winning masterpiece is the result of five years of meticulous research, also earning its author the recognition of ‘Ally of the Year’ from the Autistic Self Advocacy Network. Available online and in stores. (The audio version is quite good for busy mums.) For a preview, please see Steve Silberman’s 2015 TED presentation, ‘The Forgotten History of Autism’. Resources for Parents (And Anyone Wanting to Learn More) Specific Blogs for Parents of Newly Diagnosed Children ‘Do You Believe In Your Children?’ by Maxfield Sparrow (formally known as Sparrow Rose Jones) who blogs at Unstrange Mind. A breathtaking piece about acceptance and believing in the potential of children. ‘I See You. I Invite You to See Me’ by Briannon Lee of Respectfully Connected ‘Welcome to the Club’ by Jess Wilson (‘Diary Of A Mom’).  ‘Diary’ is a very popular, powerful autism-related Facebook page run by a pro-acceptance mother. This particular piece has been translated into dozens of languages and viewed millions of times. ‘What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism’ by Ariane Zurcher. Ariane is the mother of Emma, a non-speaking Autistic teen. Ariane began her parenting journey going down the rabbit hole of unproven and disproven ‘cures’ and has come full circle to a place of acceptance. Emma has written most of the site content herself, and there is a terrific resource list of non-speaking Autistics who blog.   Resources for Children ‘Welcome To The Autistic Community’ by the Autistic Self Advocacy Network (this piece is geared toward Autistic adolescents, but the language can be easily adapted for younger children and/or non Autistic peers). There is a version for adults as well. ‘Autism Explained for Kids’ by Professor Puppet. A wonderful, short piece for very young children Ed Wiley’s Autism Acceptance Lending Library (website, FB page and the best mascot ever, ‘The Neurodiversity Narwhals’)   Books The Real Experts, a collection of essays by Autistic adults. Edited by Michelle Sutton. Available online via major book providers. What Every Autistic Girl Wishes Her Parents Knew by the Autism Women’s Collective. Available online via major book providers.   Websites/Facebook Pages The Thinking Person’s Guide to Autism: a pro-science, pro-acceptance resource for Autistics, parents, professionals and anyone wanting to learn more (website and FB page), with a very active FB page and excellent resource section on its website. The I CAN Network: Australia’s first Autistic-founded, Autistic-led social network (not-for-profit) that is devoted to providing mentoring for Autistic young people via school-based programs, camps, online mentoring and community events (website and FB page). There is also a closed group for those keen to get involved with I CAN. Jeanette Purkis Autism Books and Things (FB page linked to website). One of the best known Autistic authors and public speakers in Australia, Jeanette has co-authored several books with an Autistic doctor on Autism & Mental Health and building resilience in Autistic children. Respectfully Connected: Journeys In Parenting and Neurodivergence (website and FB page) Parenting Autistic Children with Love and Acceptance (website and FB page)   Support/Information Groups (Not Exhaustive) Autism Inclusivity: Closed FB group that offers a safe place for parents of Autistic kids to connect with and get advice from Autistic adults (many of whom are parents themselves) Autistic Allies: International community of people working together to promote Autism acceptance. Once you join Autistic Allies, you can access the closed parent support group and/or the closed group for educators. Yellow Ladybugs, Connecting Girls with Autism: A group that provides social activities and advocacy for Autistic girls, along with very valuable information for the community (website and FB page). There is a NSW branch of YLBs that organises inclusive social activities for school-aged Autistic girls.   You might also like: Something to Embrace: Autism Acceptance with Princess Aspien […]

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