A mini interview with Mrs H

I’ve no idea how I came across Mrs H and her page but it feels like we’ve known each other forever. I am lucky that I’ve met Mrs H and her beautiful family. Kelly (It’s a Tink Thing) and I travelled to Scotland last year to finally meet her face to face. Such an amazing family and Mrs H is a fantastic friend that is extremely caring and supportive. She goes that extra mile to look out for people despite having an incredibly busy home life. She’s one special lady!

Tell us a little about yourself

Hello I am Mrs H, mummy to two incredible little girls.  I love cooking, reading crime novels, drinking wine and going to the cinema.

What is your connection to autism?

My husband and both my daughters are autistic.

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What made you start a Facebook page/blog?

We had a terrible time getting the girls diagnosed and supported.  It took a long time to get my older daughter’s diagnosis and soon after her diagnosis we relocated to Scotland.  Social care up here accused me of child abuse and of making it all up as they didn’t recognise her struggles.  I set up our page to spread information about autism generally but to also highlight the more hidden aspects of autism in some girls on the spectrum and to try and prevent others who may have been in the same situation as me, from feeling as alone as I felt whilst fighting to clear my name.

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

No, there is not enough at all.  We have to travel quite far to access anything and that is varied and limited.

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

I think autism and autistic people are under represented and the few fictional characters I am aware of all seem quite stereotypical.  I’d love to see more nuanced characters representing girls on the spectrum in more mainstream dramas.  Talia Grant in Hollyoaks is a huge step forward but I confess it’s not a show I watch.  There have been massive strides forward in terms of coverage in documentaries talking about autism and representing autistic people – I thought the Chris Packham documentary, Asperger’s and Me, was brilliant and the Channel 4 show ‘Are you Autistic?’ fronted by Georgia Harper and Sam Ahern, two autistic women was great.  It provoked a lot of discussion outside the autistic community too.  It’d be great to see more autistic people fronting main TV shows like the One Show, or This morning, producing and controlling how autism is portrayed both in fictional and reality based genres.  Anne Hegerty’s appearance in ‘I’m a Celebrity’ was very powerful because autism wasn’t the focus but her experiences and reactions featured enough to help people understand how it can impact on life.  I thought she was incredibly brave.

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

All the Girl with the Curly hair books by Alis Rowe are brilliant.  Talking Autism, Parenting your Unique Child by Victoria Hatton and Walking on Eggshells, Confessions from an Asperger marriage and how we made it work by Karen Rowlands.  Karen also wrote an app which is brilliant called Asperger marriage Instant Help.

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What would you like the world to know about autism?

That it affects girls in the same way as boys and that it is not an illness or something that needs to be ‘cured’.  It’s just a different operating system.  The world is not set up for the autistic operating system though so it isn’t easy wherever someone is on the spectrum and by talking about autism, learning about it and by making small adjustments for an autistic person you can make a real difference to their lives.

You can follow Mrs H (and Little Miss H & Tiny Miss H) here: H2Au: the stuff of our life

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

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

Another New Year

How did 2019 arrive so fast? In the blink of an eye it is here and everything is back to ‘normal’ after a very festive period. The first week of January was stolen from us by the winter sickness bug, both children as its victims. Eliza coped really well considering she hates feeling and being sick. In fact, she’s got the patient thing perfected by really playing on it to her advantage. “Mummy, can you bring me a teddy…… can you get me a drink please……. I need ice cream…… because I’m poorly”. Each request met with a cheeky grin when she felt a little better. I’m glad the bug has gone away. I’m very glad it never grabbed me as well! A day of cleaning every single surface and floor made me feel a whole lot better after a week of germs.

School has been back for one week already. Just like that, a brand new term started. Eliza came home today with two awards. One for excellent reading and the other for completing 10 metres front crawl in swimming. She’s had a great first week back although the first few early mornings were a struggle and she actually napped on the journey to school. She has homework to do this weekend, write an essay about her Christmas holidays. Eliza is not a fan of written work, her fine motor skills are poor so she struggles but she loves Christmas, I mean REALLY LOVES it, so she’s happy to write all about it. We might be in January, we might have taken the tree down and all decorations, but she’s still singing Christmas songs and watching Christmas films and asking how many sleeps until Santa comes again. Once we get to the summer holidays (wow they seem so far away in July and August) she knows her favourite times are about to start – Halloween, Bonfire Night & the whole run up to Christmas. First though, she has a birthday to look forward to. In March she enters the double figures…… 10!!! She’s so ready, I’m so not! How is she growing up so fast?

2019 will be whatever it is. I’ve entered it with a fresh mind, no expectations or demands but a hopeful and positive attitude. This time last year I was in a dark place, needing therapy and medication to help me get through everything. A year later and for the first time in years I actually feel like me and I’m remembering who I am. It’s refreshing so I’m taking that with me this year. Working on me a bit more as I’m an expert at neglecting my own needs and putting other first. I have some amazing friends and family behind me so feeling very loved and lucky.

Enjoy your year, whatever it brings you. The past is called the past for a reason, don’t waste too much time pondering what should be left behind. No matter what the years brings, chase it and embrace it. Forward is the way, always forward.

This has been a blog prompt from the great ‘Finish the sentence Friday’ group based around ‘OMG, It’s January!’ and hosted by the fabulous Finding Ninee and Undiagnosed but okay

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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.

 

 

What a difference a diagnosis makes

When Eliza was diagnosed with autism, it was a relief. A relief because I knew she was autistic anyway but that single piece of paper with her diagnosis on was a key, a key to open the way to the specialist education, therapies and interventions that she needed. She was only 3 years old but early intervention is so important although not always available and the sadness and reality these days is that support services are being cut daily and budgets slashed so many children are now being forced to wait years for an appointment let alone a diagnosis. I know she was diagnosed at the ‘right’ time both personally and when all the services she needed were at our disposal. We were some of the lucky ones before the SEND crisis started spiralling out of control. The reality these days is that children and adults are being failed. They are left to wait, made to fit in, expected to adapt without support and this is damaging.

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When Eliza was diagnosed, she had already been using Makaton sign language and began using PECS (Picture Exchange Communication System) to aid her communication. Her favourite word was ‘no’ which she could speak and sign perfectly! But when out in public, strangers would often stop and chat in the supermarket queue and many quickly judged Eliza for not replying to them, assuming she was rude. Often when I explained that she had very limited speech and was autistic and needed time to process things, we’d get replies including “She’s just trying it on, she’s fooling you”, “Oh but she’s a girl, she can’t be autistic” and “I’d not put up with that, I’d have her talking by the end of the day….”. Often Eliza would reach for the PECS cards I carried in my pocket or on her bag and point to pictures of what she wanted or what she’d seen. She was communicating yet the sight of these picture cards used to make people turn away and whisper, some would just stare at her and loudly ask “Can’t she speak then?” which would then send a lot of eyes towards our direction and often lots of sympathetic head shakes. The reality is that a lot of people do not understand autism, communication aids and or anything that they don’t see as the ‘norm’ and when they see a child or adult that is different, attitudes are usually ignorance or pity.

When Eliza was diagnosed, we lost contact with a lot of friends and even some family over the following couple of years. The child that had been attending parties and play dates was suddenly left out, despite the fact she’d never been anyone or anything different to the beautiful and funny girl she always had been. But diagnosis somehow made a difference. Suddenly Eliza wasn’t Eliza anymore to them. She was ‘the different one’ or ‘the autistic one’. Whether through ignorance or lack of understanding we were excluded. Eliza was excluded. Some family didn’t understand (some didn’t want to try to either) and we were given the “She’ll grow out of it, you’ll see” and “You read about this in the papers, parents getting their children labelled so they can claim extra money”. YES THAT ACTUALLY WAS SAID TO US! Family seems to assume that as they are family, they can say whatever they like without repercussions. Just because we are related doesn’t give you any right to be rude, ignorant and judgemental. The reality is that everyone has their own expectations of what is ‘normal’ yet many don’t wish to understand or at least try to realise that, actually, Eliza is perfectly normal thank you very much. She’s just different in the way her mind works. A diagnosis opened some doors for her regarding therapy and school but it also closed some with friendships and relationships.

When Eliza was diagnosed, it didn’t stop her doing any of the following –

  • Making friends and maintaining those friendships.
  • Learning to swim.
  • Reading at a level 2 years above her own age.
  • Taking control of her own anxiety and facing her fears of being in theatres, cinemas and restaurants.
  • Learning to play a brass horn and also learning piano.
  • Telling awful made up jokes about farts and burps.
  • Becoming an Ambassador for an Autism Awareness & Acceptance clothing line Just Ausome
  • Being asked by Chewigem to review and share feedback about their products.
  • BEING ELIZA, BEING DIFFERENT AND NOT LESS!!

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Thanks for reading. This was a prompt about ‘A reality I’d like to change is…’ from ‘Finish the sentence Friday’ hosted by Finding Ninee and Sporadically Yours