A mini interview with Lynn

I ‘met’ Lynn a few years ago on an app called ‘periscope’ where we chatted with friends in a kind of ‘go live’ setting. I love following her journey and Owen is an amazing boy. Together they are one incredible team and they create some incredible art work which I love seeing. Here are Lynn’s answers to my questions:

Tell us a little about yourself

I’m Lynn and I am currently living in West Virginia, USA, with my son, Owen who is seven. After moving to West Virginia I became involved in theatre, and eventually into stand-up comedy. My son and I love to go bowling. And I love donuts.

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What is your connection to autism?

My son, Owen, was diagnosed with autism in March of 2015, near his third birthday. Since then I have been trying to learn how to help and support my son.

What made you start a Facebook page/blog?

I wanted to share our journey about autism with others. I wanted other parents to not feel alone, and for those that had not been around autism, I wanted to share a glimpse into our world to see what it is like. I wanted to show the whole story. My roller coaster of emotions, the highs, the lows, and in-between; all while learning what autism means to my son, and his future. I wanted a place to share our victories, and celebrate other’s victories, as well. Plus, I wanted people to be able to ask me questions about our journey.

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Do you think there is enough support and resources in your area for autistic people and there families?

No! Flat out, NO! I don’t think there is enough support for families anywhere. That’s a broad statement, but I truly believe that so many families are struggling for help, and support. I feel like the support needs to start earlier, and start with the parents, and guardians, and then the children. I felt like not only was I having to recreate the wheel, but I had to find a way to move it along. I think the nice thing about social media is being able to reach out to others that have walk along this path, and they become part of your support system.

What are your thoughts about how autism is portrayed in the media?

I think I block a lot of it out. I try to focus more on the positive stories, and not what the media is really saying.

What three books related to autism would you recommend to people?

That’s a hard one for me to narrow down. I have learned a lot from the author Brenda Smith Myles. Any of her books, I think, will answer a lot of behavioural questions, and help you with solutions, or more of an understanding of autism.

What would you like the world to know about autism?

My son has severe autism, but he is thriving. He is learning to talk, and every day I see growth. I want people to understand that he is accomplishing great things, even though he may struggle to learn some things. It’s not always easy for him, or me, but like I tell him, we are a team, and will get through this together. I always say, “autism wasn’t important to me, until autism was important to me”.

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You can follow Lynn & Owen on Facebook: Sweet Baby O

Lynn’s blog is here: Lynn Browder

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A mini interview with Zoe

I can’t remember when I started following Zoe’s incredible Facebook page but Brodie was still in school. I love following Brodie’s adventures, he’s an amazing young man (Harley too, Brodie’s brother) and incredibly lucky to have such a wonderful mum. Here are Zoe’s answers to my questions:

Tell us a little about Brodie

Brodie is a 20-year-old young man, he has his own lawn mowing business and he works two days a week with a support worker, the other 3 days he attends a farm day options programme.  Brodie loves life and has a great sense of adventure, he loves fast rides, fast cars and fast boats.  He can ride a quad bike, motor bike, and loves to go on the jet-ski.  He follows Aussie rules football and is a Port Adelaide supporter.

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What is your connection to autism?

Brodie was diagnosed with Autism at 22 months old, his sibling Harley was diagnosed with Asperger’s when he was 8 years old.

What made you start a Facebook page/blog?

Brodie is a legend and I don’t care if sharing his achievements is ‘inspiration porn’ or not, I think it’s great he can inspire others to live life to fullest they can.

Do you think there is enough support and resources in your area for autistic people and their families?

Over the years it has changed so much, services have grown, but everything is still a fight, you are constantly having to prove your child’s autism like it may have magically disappeared.

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What are your thoughts about how autism is portrayed in the media?

I feel like the Autism community is often fighting within itself over these types of things.   I believe strongly we must listen to Autistic adults, but we must remember that being a parent of a person with Autism is also a role and it in itself has its own story and no it’s not the same narrative as being an Autistic person, but it has a different story and parents should feel OK with sharing that story with respect of course.

What 3 books, related to autism, would you recommend to people?

Gosh I haven’t read any books in ages (who has time) I found the movie “The Black balloon” was representational of our story, it’s also Australian.

What would you like the world to know about autism?

It’s different for everyone and each story/each family situation/each belief system and values is going to change how autism looks for each autistic person and their family and friends and supports.  I can share my story, I can assist Brodie to share his story and help provide a platform for him to do so and assist him with finding his voice, but that’s all. It’s just how it is and how it was for us, we can’t tell others how be autistic, or what autism means to them or how to parent their child with autism.  You need to take it on an individual basis and you have to accept each unique story without judgement.

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You can follow Zoe & Brodie’s Facebook page here:  Forehead kisses – Our Awesome Autism page

Brodie’s business page is here: Mow Your Own Future

A mini interview with Chris

We first met Chris in 2017 (face to face, I’d followed his page a long while). Eliza is in his book ‘What we love most about life’. Since then we’ve become very close friends and Eliza adores spending time with him. I’ve had the honour of reading his upcoming novel, Underdogs, which is incredible and is released next month! He’s one of our favourite geeky humans in the world and here are his answers to my questions:

Tell us a little about yourself

I’m a special needs tutor, formerly a primary school teacher, and I run the website Autistic Not Weird. Since starting it I’ve also become an international speaker and autism trainer, and a published author too- which wasn’t the plan but I love how it turned out!

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Chris Bonnello

What is your connection to autism?

Being autistic myself, diagnosed with Asperger’s at the age of 25. Having grown up before knowledge of autism was widespread, and being described as having a “slightly odd personality” in an official report at the age of ten.

What made you start a Facebook page/blog?

I left mainstream teaching in December 2014, having also worked in special education. In the gap between teaching and tutoring, I really came to miss having the opportunity to build up autistic people. So I thought I’d start up a website to write about autism while I was getting anxious and failing job interviews for a living.

Do you think there is enough support and resources in your area for autistic people and their families?

I waited literally five years between my diagnosis and my first follow-up appointment, so not particularly.

What are your thoughts about how autism is portrayed in the media?

We’re certainly heading in the right direction, although we’ll never get it perfect. Autism is just too wide and varied a spectrum for everyone to be represented accurately. But at the very least, we’ve moved on from the Rain Man days and started listening to feedback from people who are actually autistic!

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Chris and Eliza, Sept 2018

What 3 books, related to autism, would you recommend to people?

(Not sure whether I can recommend my own. XD Happy to skip this one actually.)

Tell us about your novel that is due to be published next month.

Underdogs is a near-future war novel featuring autistic (and otherwise neurodiverse heroes). The whole of Britain has been taken over and imprisoned in giant walled citadels, under the watchful eye of countless cloned soldiers. Only a dozen people remain free in the abandoned countryside, eight of whom are teenagers who escaped the attack on their special school. Now they’re Britain’s last line of defence, learning how to play to their strengths in a world that’s always defined them by their weaknesses.

Turns out there’s quite a demand for neurodiversity in fiction- Underdogs has now had 2.5 times as many copies pre-ordered as the average novel sells in its opening year (and we’re not even at Day One yet!). It’s been endorsed by Steve Silberman (author of Neurotribes) and by Carol Povey of the National Autistic Society, which I’m utterly thrilled about, and I can’t wait to see everyone’s reaction once it’s released. Not least because the publisher has already accepted the sequel!

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What do you hope the future holds for you as a writer and for your advocacy work?

I’ve never had any idea how to answer this question! I’m honoured to have such a well-read platform for my autism advocacy, astounded that people have even given me awards for it, and events such as having a novel published and speaking at Sydney Opera House have been totally outside anything I ever dreamed of in my teaching career. I think maintaining what I already have is absolutely enough. Although I’d love for the Underdogs series to be successful enough to continue beyond its current two volumes- I have four planned in total!

What would you like the world to know about autism?

I don’t think there’s enough room for me to answer that question! But mainly, I want the world to know that we get to be individuals too rather than just walking diagnoses; that the world becomes better for autistic people when we’re defined by our strengths rather than just our weaknesses; and that opportunities to play to our strengths do wonders for our self-perception.

 

You can find Chris on Facebook here: Autistic Not Weird

Website: ANW Website

Chris’s novel can be ordered here: Underdogs

Chris’s book ‘What we love most about life’: WWLMAL

A mini interview with Miriam

Miriam is a lovely friend and fellow blogger. We met through our Facebook pages and online groups that we are both in. She’s always supportive and encouraged me to keep blogging during times I felt like giving up. Here are her answers to my questions:

Tell us a little about you and your family.

My name is Miriam and I live in Scotland. I have a husband, two children and a large tank of tropical fish. I have a degree in primary school teaching but I am currently a full-time parent carer.

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What is your connection to autism?
My husband is autistic, though he wasn’t diagnosed until he was 59. Both of my children are autistic.

What made you start a Facebook page/blog?
Both were started for very different reasons and both serve a different purpose for me.
My blog (www.faithmummy.wordpress.com) was started on my 36th birthday. I realised I was closer to 40 than 30 and wanted to do something worthwhile with my life but having two four-year olds, one of who is significantly disabled, I felt so alone and stuck. My son had just been diagnosed with a genetic tumour growing condition the month before and I thought writing my story might help others. I wrote my first blog called ‘the story so far’ and within hours over 800 people had read it! I asked my brother (who wrote a blog for his work) what I should do next and he said I should update it. I asked how often and he said weekly! I was shocked but the next week I wrote more and for the last six years and three months I have written a weekly update.
When my first blog was published on another site after a few years everything changed. I began getting not only a lot of abuse and hate but a huge amount of support and hundreds of strangers friend requested me as they wanted to read my weekly updates. It was then I felt I should start a page where I could have followers and post updates without taking away from the intimacy that I posted on my own wall for friends and family.

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Do you think there is enough support and resources in your area for autistic people and their families?
That’s a great question. I think much depends on the individual needs of families and children. There are lots of support groups and groups for children but not everyone is able to access these for various reasons. I also think there is very little nationally for more severely affected children like my non verbal son.

What are your thoughts about how autism is portrayed in the media?
The media, by nature, have an agenda and want views so will always naturally be drawn to autism from the view of ‘Will people watch this?’ That means they are most likely to use extreme examples and in that aspect it can portray autism as extreme one way or other. The other factor is that there is no such thing as a ‘typical autistic’ which makes their task almost impossible. The more they feature it though the better for everyone.

What 3 books, related to autism, would you recommend to people?
It very much depends what the person is looking for. Story wise I love ‘After Thomas’ which is a story of one autistic boy and how getting a support dog helped him. My best feel good factor one would be What we love most about life by Chris Bonnello. As a general knowledge about autism book ‘the ten things everyone with autism wants you to know’ is good.

What would you like the world to know about autism?
That while every autistic person may have difficulties in social awareness and understanding, rigidity of thinking and have some repetitive movements plus communication difficulties that doesn’t mean they are any less than anyone else. For some autism is very much a major disability but for others it is more a difference. It’s about accepting people regardless.

You can find Miriam on Facebook here: Faithmummy

My fears for the future for my autistic daughter

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Every parent has fears about the future, it’s natural to worry about the unknown because we want to protect, guide and support our children as much as possible and for as long as possible and the future cannot be predicted. I have the same worries as most parents – finding the right schools, finding out she’s being bullied and a whole bunch of other things. When you have an autistic child, a whole new bunch of fears come in to the picture.

Eliza likes to chat about the future, she loves to be involved and it helps her anxiety if she can openly talk about things. We’ve already been talking that she’ll go to a new School one day as she outgrows her Primary setting. She’s ten this year so we’re talking High Schools as this coming September when it is EHCP review time, we’ll also start planning for the changes to come when she’s in her final year. Now we all know there are not enough schools, let alone schools that will be able to meet her needs. Hence, we’ve already been in contact with some and are hopeful they have space for her when transition time starts but it’s a worry that there won’t be one for her.

Every week I hear of services and therapies being cut back due to lack of money. Eliza’s current school provide pretty much all she needs including speech therapy, occupational therapy and they even helped us get on the SEN dentist treatment list. But it won’t always be this easy. What will be available for her when she’s ready to leave school? What services will still exist? We already know about the fight to move from DLA to PIP, they certainly don’t make it easy that’s for sure. I want Eliza to be as independent as possible, she has already told me she doesn’t want to live at home forever and she’d like to live in some kind of supported living arrangement. Again, there are nowhere near enough of these places. I’m hopeful that more will exist, or a suitable alternative.

My biggest fear is knowing that I’m not going to be here forever. I’m not immortal, I will die one day, and I want to make sure she’s had as much guidance, love and support as she can to help her take on this crazy world as an adult. She is strong, confident and intuitive but also vulnerable. Vulnerable to those that could take advantage of her kind nature. Vulnerable to those that could manipulate or bully her. Vulnerable to her own feelings, she’s an empath and feels extremely deeply so we often talk about this and come up with ways for her to help her control the strong emotions she feels, how to process and filter through them and most importantly, how to take a step back and allow her own well being and mental health time for calm and recovery.

She’s only ten this year, but Eliza’s already overcome so much and she’s aware of how much we have to fight for services, therapies, school placements, EHCP’s. She’s a confident and very academically able child, she understands more than most people assume. I will never stop encouraging her to have her own opinion and to stand up for what she believes in because one day she’ll be doing this without me.

 

*** This was written for the Firefly blog which can be found here: Fears for the future

Interview with the author of ‘UNDERDOGS’ – a novel with special needs heroes written by Chris Bonnello

For those that may not know you, tell us about yourself.

My name’s Chris, and I’m the writer behind Autistic Not Weird (http://autisticnotweird.com), diagnosed with Asperger Syndrome at the age of 25. After I left primary school teaching I launched my website to talk both personally and professionally about autism, and it’s taken off a bit better than expected! Three years on I’ve won three awards for my advocacy and given over fifty autism talks, some internationally (including at Sydney Opera House!). I’m also a special needs tutor, a Boys’ Brigade captain, an enormous chess geek and a soon-to-be-published novelist.

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Chris Bonnello

Can you explain why the title has been changed from Guerrillas to Underdogs?

It was a joint decision between myself and the publisher, because it’s far more suited to the themes of the book and its characters. Whereas Guerrillas simply means “we pick up guns and shoot them”, Underdogs alludes to the war their fighting (with odds ridiculously against them), the size and age of their army, and the characters themselves who have grown up being made to believe they’re inferior. And besides, who doesn’t love a good underdog story?

 

When did you start writing Underdogs and what inspired you to write it?

Underdogs has gone through a bunch of incarnations, but the very, very first draft was in 2010, back when it was named Guerrillas. I wanted to write the ultimate underdog story: a novel series where the good guys were almost mathematically certain to lose, but would fight anyway. Hilariously, writing the book was also a coping mechanism for my unemployment at the time, giving me something to do with my days. It was clearly never going to get published, but that wasn’t the point of it. And now it’s literally being published, with over 400 copies sold already.

 

Some of the characters are from Special Education. What made you decide to go with this amazing idea?

In 2014 I was working at a special school, and looked at Underdogs again. The thought of having the main characters being teenagers from a special school crossed my mind, and the more I thought about it the more I felt it absolutely had to happen. Not only would it be a unique idea in the dystopia field, but also there’d be major opportunities to discuss important topics. Underdogs would become a novel that would actually have something to say.

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There are some powerful messages/life lessons in the story. What do you hope readers will take away from the book?

I don’t want Underdogs to be too preachy: underneath everything else, it’s an intense action novel filled with loveable characters, and as a novel it should be seen that way. With that said, there are massive opportunities to be taken (and a lot of responsibility on my part) to make sure the reader is richer from the experience of reading. I want neurodiverse readers to experience a novel where they can identify with the main characters, and see people similar to them who go through massive challenges due to their conditions but do incredible things anyway. I want neurotypical readers to leave the book with a better understanding of teenagers with special needs: not just what makes them different, but also the largely unspoken common ground they have with other teenagers.

Finally, I want all the book’s readers to gain a little more insight into what happens when those defined by their weaknesses get a chance to play to their strengths.

 

What themes/genres does Underdogs fit?

Aside from the obvious young adult/dystopia genres, there’s an up and coming genre called “disability-lit”, which Underdogs is perhaps around the edges of.

As for themes… I’d say the big ones are the difficulties of being an underdog (both in the war sense and in the special needs sense, these characters have been raised to believe they’re “inferior” to those they’re fighting to save), and trying to be the best you can be when the world is not on your side.

 

Is there a certain age range the book is more suitable for?

I’d say “12+”, which obviously is an age range that includes adults. It has that Harry Potter/Hunger Games cross-age-range appeal, written for teenagers but adults are likely to love it just as much. Among its dozen or so beta readers, both teenagers and adults have been equally enthusiastic.

 

Underdogs is available in paperback and eBook once published. Is there any possibility of an audiobook version?

A lot of people have asked this. Unbound Publishing have told me that it’s rare that they do audiobooks, but they will if the book’s wildly successful and proves that there’s a level of demand for it!

 

Who is your favourite character in Underdogs and why?

I’d say it’s a tie between Jack, a 17-year-old lad with Asperger’s who understands computers better than people, and Dr McCormick who leads the Underdogs as a calm, guiding force who loves building people. Jack is a loyal, honest (sometimes too honest) young man who helps his friends put things into perspective, and a nice dry sense of humour. McCormick is like Dumbledore and Uncle Iroh from Avatar: The Last Airbender rolled into one, except a mathematics lecturer.

Kate comes close behind though. She suffers massively from anxiety but makes a point of confronting absolutely everything that makes her nervous. She is by far the bravest character in the whole Underdogs universe.

 

Will there be more Underdogs books to follow?

Oh yes. I’m on book three already! Obviously, the reception to book one will determine whether the publisher will except book two, but going by Underdogs’ performance so far I think we can afford to be optimistic.

 

As the author, tell everyone why you think the world needs a book like Underdogs.

Because representation matters. Meaningful, accurate representation of neurodiversity in fiction is so rare, and most neurodiverse characters in novels (or movies) are either tokenistic or based on stereotypes. Underdogs, if it performs well, may be a key part in the battle for representation as well as being a heart-pounding action novel in its own right.

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There are some incredible rewards with the purchase of the book including having your name printed in the book and meeting the author himself. Underdogs can be ordered here: Underdogs

Are you tired of characters with special needs being tokenised and based on stereotypes, or being the victims rather than the heroes? This novel will interest you!

I recently did an interview with the fabulous Chris Bonnello who runs the popular website and Facebook page ‘Autistic Not Weird’. You can read that interview here: Chris’s Interview. The Pre-Order phase for the novel is still running until the second week of December so if you wanted to not only order the book, but grab some of the amazing rewards, (including having your name printed in the book or meeting the author) then now is the time to do it. If you know someone who may love a book like this that features heroes from special education with conditions including PDA, Autism and ADHD, please tell them about the book too. Thank you.

You can order the book here: Guerrillas order page.

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You can see Chris’s incredible autism advocacy at Autistic Not Weird

If anyone wishes to have the above poster image emailed to them so they can print it, email it to others etc then please send me a private message over at Living with Blooming Autism.