Category Archives: Autism

Autism: The fun bits, courtesy of Lorie!

My wonderful daughter, Lorie, is not renowned for her culinary skills but last night was a bit too far, even for her!

Just for clarity, the items on her plate include baked sweet potato (vaguely recognisable), a pepper, courgettes, mushrooms and a dollop of tomato sauce (for health reasons!).  I was going to run a competition to see if anyone could ‘guess the meal’ but it felt impossible that anyone could manage to even remotely start to get their head around it so I decided not to, for humanitarian reasons….

Definitely not renowned for her skills regarding food, further proof below!

She tells us that she put the vegetables in the oven and it didn’t occur to her that there was a time limit as to how long they could stay in there and still be edible (?), raised eyebrows all round.  And their were many eyebrows to be raised last night, 15 in fact (a couple missing in the photo) we were having a get together to mark the fact that Meg is leaving us to go to uni in Gloucester, it was a kind of ‘send off’.  We’ll all miss her 🙁

Lorie comes in for a lot of stick but the photographic proof below shows exactly why!…..anyway, she knows we’re laughing with her, not at her!

Exhibit A: Eating an entire ‘Red Velvet’ cake, straight from the wrapper!

Exhibit B: Trying to eat a meal with 2 forks and not even realising until she was half way through!

I could go on, but for the sake of Lorie’s self-esteem, I will stop there.

Lorie keeps us all laughing, she is an endless source of joy and hilarity, intentional or not, we all absolutely adore her.  We all need to keep laughing so we don’t end up crying…laughter really is the best medicine.

Thank you Lorie, and please, don’t ever stop being you!!

LIFE: What does that mean to you?

If I said to you ‘what is life?’ and you had to say the first thing that came into your head, what would it be?  Do it now…and I would love to know what the first thing you thought was.

That’s why I’m writing this, I’ve just been thinking about life, firstly thinking about Pippa and something I’ve just sent her about BPD that I found online….

Matt here, mental health contributing editor for The Mighty, and it just so happens that my partner lives with BPD. With that in mind, I wanted to highlight some of the things I want my partner to know about my perception of BPD.

So, here it is, my dearest one, and everyone else out there who believes their BPD makes them “manipulative,” “broken” or “unsuitable” to be in a relationship.

I see how it hurts you, not only the stigma of others but the stigma you place on yourself. You believe I see you the way the stigma portrays you: as somebody who can’t possibly be in a loving relationship without your supposed “inherent toxicity” driving it into a smoking crater. But, that’s not the truth at all. I see a woman made raw by her trauma, stripped bare and left to scar without any kind of healing. I see the fear you will be abandoned, and I understand it. You’ve been abandoned so often, made to feel like you’re worth nothing but loneliness. I see you compare yourself to other women you believe are more beautiful and worthy than you, and expect me to do the same.

These things you feel toward yourself are not true. Your worth lies not in your scars, but in how you’ve survived them for so long with no guide to life but yourself. You are worthy, and strong, and fierce, and beautiful, and all of these things and more. You are not broken. You are not evil. You are not “too much” for me, and if anyone else believes you are then they definitely don’t deserve you. You were touched by trauma but not infected by it.

You’ve got this, and I’ll stand by your side the whole way.

She’s just told me that she relates to this totally but life is still hard for her.  Pippa’s story is so incredibly complex, from her autism to her Cerebral Palsy and endless operations, to her Anorexia and Borderline Personality Disorder, from her PTSD from her father’s suicide to the constant Anxiety and depression she fights every day.  She’s been through so much and yet she’s become a strong woman in spite of everything that could have stolen her life before it has really started.  

I’m incredibly proud of Pippa, proud of how far she’s come and how she keeps battling on, proud of how open she was in the film and how many people have contacted us to tell us how much her openness has helped them, it took a lot of courage for her to be so brutally honest.

That’s all very deep and meaningful but ‘life’ means so many things to so many people and, on a lighter note, as I started writing this I accidentally opened the photos on my phone.  So, from mental health to fish!

We have a huge number of fish in our pond, they’ve discovered breeding and now they’re doing a lot of it!  But the ‘Grandaddy’ of them all is a Koi that I’ve had for several years, we don’t see him very often but this morning he was lying half under a Lily pad so I took some photos.  The pictures don’t really give much scale but I can tell you he’s about 12″ long and looks like ‘the monster of the deep’!

NOT THE BEST PHOTO BUT, TRUST ME, HE’S ENORMOUS!

So, the word ‘life’ means something totally different to everyone and sometimes my personal perception changes depending on what’s going on in my life at the time, and sometimes, like today, it has many different meanings all at once.  So, here’s a picture of my fish (and the pot I planted last week that I’ve managed to keep alive so far!)

Why am I so proud of this pot of plants? Anyone who knows me well is aware that I have ‘killing plants’ on my list of hobbies (gardening isn’t my strong point!)

ONE LIFE, LIVE IT!

 

Autism: Do you have to be autistic to understand autism?

A friend of mine answered a Tweet yesterday telling someone that I am an ‘autism expert’, the response to this from a certain lady was  ‘if she’s not autistic she’s not an autism expert’.

I speak about how we need people with differently wired brains in my TED talk

Now, there may be an element of truth in this statement, but, not being on the spectrum but having a great understanding of the way autistic brains work has huge benefits as well. And why do I understand autism so well?  I’ve been around autism for my entire life!  My mother and both of my brothers were/are on the spectrum (one of my brothers and my mother are deceased), most of my children are on the spectrum and a lot of people I meet, and indeed, a lot of my closest friends are also on the spectrum. Five years ago I also set up, and still run, an autism support group where I obviously meet numerous people on the spectrum.

There is power in understanding the way the autistic brain works and how the different wiring affects people, but also understanding that the poor souls not on the spectrum sometimes struggle to understand the straightforward way the autistic brain tends to work.  I can interpret the differences in behaviour between those on the spectrum and those not, I can see where the communication struggles are occurring and suggest ways to overcome the challenges.  This is especially useful when I’m helping a couple where one is on the spectrum and the other isn’t.

I can often help to unravel the communication challenges

Because I understand how both types of brain work I recognise when communication is less effective due to the differences, and I’ve had plenty of practice with my own children who are all incredibly different within their autism.  They have challenges with totally different things and I understand what is causing those challenges, I’ve ‘studied’ my children in order to be able to help them as best I can and this has led to a great level of understanding.

No, I’m not autistic, but my time spent with autistic people has given me a huge amount of insight into how they think and feel, I can empathise with them, I can help them and I can use this to make people’s lives better.  On the other side of the coin I can also help people who are on the spectrum understand why non-autists seem to make communication so complicated and how to better understand what they are trying to say.  I see myself as being a kind of mediator.

And, of course, I can never experience the way the autistic brain actually works but maybe my perspective is the next best thing?  Better than nothing maybe, and, we need ALL types of brain wiring to make our world a better place to live.  Vive la difference!

Autism: Kittens in the freezer

Yes, your eyes are working just fine, the title does say ‘Kittens in the Freezer’!  I put something up on Facebook yesterday mentioning this and had a lot of raised eyebrows, should we be reported to the RSPCA?

No, it wasn’t quite like this!

Errrr…no, we might be bizarre, but we’re not cruel, so let me explain.

It came to pass some years ago that myself and all of the children were on holiday in Devon for a week and a very dear friend was very kindly house sitting for us.  He was minding the dog and all of the cats and making sure the roof didn’t blow off in a storm (it has happened!) or marauding invaders didn’t take over the property (that hasn’t happened yet but there’s plenty of time!), he was also minding our very pregnant cat who wasn’t due to have her babies for at least 2/3 more weeks.

On day two he rang me to say that she’d had 5 beautiful but very small kittens in one of the girls wardrobes, and, so far so good.  Maybe we’d got it wrong and she was a lot further gone than we thought, anyway, she’d had them and Lewis was doing a stirling job of making sure all was well.

Until the next morning when he rang to say that one had died overnight but the rest seemed fine.  I was heartbroken and knew the children would be even more so and they hadn’t even had a chance to see the one we’d lost.

Now, I guess in a normal house this wouldn’t present too much of a problem beyond the grieving process, but, as a lot of you know, most of my children are on the autistic spectrum, so normal rules just don’t apply.  I had to think quickly to try and work out an appropriate resolution where they would at least have the chance of seeing him/her before burial.

I could think of nothing other than emptying a freezer drawer, wrapping it in tissue and putting it in a freezer bag so that we could bury her in the ‘animal burial grounds’ when we returned.  I felt pretty chuffed with myself, this seemed to solve the problem pretty well I thought.

The next day there was more bad news, we’d lost another one, so, the same instructions for poor old Lewis, wrap it in tissue and put it in the freezer.  Over the next couple of day the remaining 3 sadly passed away, they had obviously been born far too early and just couldn’t survive.  The children were all devastated but actually took it better than I had hoped, and they also knew that they would be able to see them when they returned and give them the send off we give all of our departed pets and random wildlife that we’ve tried to rescue over the years ( all dearly loved and named!).

We returned from holiday a few days later and we agreed to bury the kittens the next day as it was late when we got back.  It didn’t happen, nor the next day, or the next.  Chaotic life carried on and the kittens were forgotten, which I feel terribly guilty about but with 7 children to focus on I should probably let myself off the hook!

Time went by and it was about 6 months later that someone came across some mysterious plastic freezer bags with tissue inside.  One of Osborn’s weird experiments?  Probably!  And then it dawned, the kittens!

Everyone felt terrible, how could we have forgotten them for so long?  Life I guess, just busy life.

They were duly given a fitting funeral within the next day or so and laid to rest in somewhere rather more appropriate than the spare freezer.  Putting the kittens in the freezer in the first place had just been a rather wacky solution to the challenges that autism can throw up, they need to see for themselves, they need proof most of the time otherwise it’s too abstract, it’s not real.  My intentions had always been entirely honourable.

So, there it is, the story of The Kittens in the Freezer!

COMING SOON, THE PUZZLE OF THE COTTON BUDS THAT WEREN’T!

 

 

Kingdom of Us: Searching questions on Woman’s Hour by Jane Garvey

BIFA’s!

Sunday night saw the entire Shanks family attending the BIFA’s, a glittering awards ceremony celebrating all that is best in the world of British Independent Film Making.  It was all very surreal, walking down the red carpet and having dozens of photographers taking pictures and shouting directions to us to look this way and that, and stand here and there, all very confusing!

Party time at the BIFA’s!

It was a fabulous night and we had the best time, we didn’t win Best Documentary but just being nominated and being in the top 5 was accolade enough when you consider how many documentaries were submitted.  It was an experience we will never forget and a huge ‘Thank You’ to Netflix for enabling us to be there.

Woman’s Hour

The morning after saw Lucy, Julia, James and I plus 2 babies (Lucy’s and Julia’s) at Broadcasting House for Woman’s Hour!  It was my first time on Woman’s Hour and very exciting, I’d been really looking forward to it.  It was Jane Garvey, a tough presenter and she had some pretty hard-hitting questions to ask.

‘The Gang’ at Woman’s Hour!

Having covered the back story to the film she mentioned that she had felt uncomfortable at watching parts of the film, as though she was intruding into our lives.  She’s the first person to say this, most people feel that whilst the film is very intimate and raw, the way it was filmed meant they didn’t feel as though they were intruding.  We wanted the film to be extremely honest and hard-hitting, we wanted to start conversations around the issues raised in the film, and you can’t accomplish that unless people feel strongly in some way when watching it.

She also asked Lucy whether she ever felt as though she was intruding too much.

Lucy answered by telling Jane that she knew not everything would end up in the final cut and as we had total control over the finished film she knew that some of the hardest things may never be broadcast.  She also said that she felt it was important that some of the hardest moments be caught on camera as they were important to the essence of the film.  We had total faith in Lucy and never had any reason to question her integrity.

Jane then asked me how many times I asked Lucy to put the camera down and ‘push off’?

The answer to that one is NEVER!  I knew, as Lucy did, that we had total control over the final cut and felt that everything should be filmed so that we had the choice.

The truth of it is that I never asked Lucy to stop, but there was one occasion when I told her to carry on and she decided herself to put the camera down.  That was a huge moment for us, we knew then that we could trust Lucy implicitly, she has become one of our closest friends over the years and we love her dearly.

Jane also asked whether it was right of me to put the children through making the film, and was it too much for them now that it’s out, in view of how much they’ve already been through?

I agonised over this one for the entire 4 years of making the film, but the children kept reassuring me that they wanted to do it, and they knew they would have the opportunity to cut anything out of the final edit if they didn’t feel comfortable with it.  They felt safe in Lucy’s very capable and compassionate hands and were always passionate about the whole thing being totally ‘real’.

Do they regret making it now that it’s available to the entire world?

No, if anything they are even happier about the project now that it’s out.  We’ve been swamped with messages from all over the planet thanking us for making such an honest film about the realities of the subjects it covers.  The people who’ve watched it say they feel reassured that they’re not the only ones experiencing some of the issues raised and they now understand people they are close to much better.

‘Besmirched’

Jane also made the statement that she felt ‘besmirched’ after watching the film.  This seemed to be a slightly unusual way of describing her feelings and very personal to her.  Besmirched means:-

to detract from the honour or luster of: to besmirch someone’s good name.

We all made the film in good faith, hoping that it may help some people in some ways.  Our intentions were honourable, we had no desire to make people feel ‘dirty’ in any way but we  were quite happy for people to feel uncomfortable.  We need our boundaries to be pushed sometimes in order to make us think in a bit more depth about certain things and I believe ‘Kingdom of Us’ does that.

 

 

The interview is here…

 

Numerous people have also messaged us to tell us that they were contemplating taking their own lives but have now changed their minds because they realise the terrible impact on the people they would leave behind.  That is a powerful reason for being so happy that we saw the project through to its conclusion.

And it does cover all kinds of things that we feel uncomfortable with, but knowing that people can relate to it and are potentially being helped makes that pale into insignificance.  If a little discomfort for us can change a few things then it’s all worthwhile.

Without controversy and discomfort there is no debate, and there must be conversation around subjects that make us uncomfortable.  

Autism: 4 things I believe contribute to the tragically high Suicide rate in Autistic people

Following on from the piece we did recently for ITV News regarding Autism and suicide, I think the facts and statistics speak for themselves, 66% of people on the spectrum have contemplated suicide, that is an alarming figure.

We can all do our part in giving people a hand up

 

What we don’t yet fully understand is why the actual suicide rate is so high within the neurodivergent population, although I have a few theories of my own.

  1. Having watched my own children grow up with the challenges that autism can create, and knowing the degree of mental health difficulties they ALL face, I believe that a proportion of their struggles relate directly to the everyday challenges they have to deal with just having to understand, and be understood, in a world that they find hard to relate to.  Autism can’t be ‘seen’ so it’s very difficult for ‘neurotypical’ (I hate that word, what is ‘Neurotypical’ anyway?) people to know that they may be having difficulty in communicating.
  2. A large number of people on the spectrum also have to contend with various sensory issues, constantly.  It may be a sensitivity to sounds, smells, textures, the list is a very long one.  What most of us don’t understand is that these sensitivities are not just irritating, the offending issue actually creates very real, agonising pain.  My children have a variety of sensory challenges and I’ve witnessed them contort with pain at  various inputs that they can’t cope with.  While they are out in the wide world they have no way of controlling their environment so these problems can ambush them at any moment.
  3. Another challenge is that people on the spectrum need to know what’s going to happen next.  They visualise everything in their heads, the problems occur when the reality doesn’t match their expectations, but, when does life ever pan out exactly the way we want it to?  Most of us adapt readily to the vagaries of life, imagine not being able to do that?
  4. Another huge challenge for people on the spectrum is actually accessing the help they need.  So many conventional therapies don’t work for them so even if they manage to ask for help in the first place, the likelihood of it helping them in real terms is very slim.  Fortunately, Autistica is doing very real research with people on the spectrum to find strategies that actually help, long may they keep up the good work.

I’ve only briefly listed a few challenges above, but try for a moment to imagine living in a world where there are so many variables that you find so unmanageable that your life is lived at the highest end of anxiety at all times?  We all experience stress, unfortunately, autistic people very often experience it on a totally different level, is it any wonder then that they often feel that they can’t cope any more?

The proportion of people living in our society with neurodivergent brains is actually very high, we need to be doing a lot more to create environments that they feel comfortable with.  A quiet room in shopping centres, colleges etc…would go a long way towards offering a calm space to collect oneself before trying to continue.

Autistica are an amazing charity that fund research into ways to help people on the spectrum manage anxiety and understand their mental health challenges along with a huge amount of other very important research.  If you would like to get involved with helping them you can join their ‘DISCOVER’ network to help them work with even more people so they can gain more insight, they already have 5000 people involved but the more the better.

We shouldn’t be losing lives to suicide and so much more needs to be done to help, let’s all join the army and shout for change….

‘Kingdom of Us’: Can a film really save lives?

 

Kingdom of Us

Life throws all kinds of stuff at us, some good, some bad, some absolutely earth shattering.    Paul’s suicide was one of those earth shattering events that left myself and my children in tatters.  10 years after the event and we’re still here, still in one piece and, remarkably, moving forward in spite of the fact that life just keeps giving….more shit that is!

I need to write a second book in order to tell the story properly (something I’m planning to do) but suffice it to say that the proverbial ‘icing on the cake’ was my heart attack 11 weeks ago, a defining moment indeed!

But in amongst all of the interesting events that have littered our lives over the last few years we made ‘Kingdom of Us’ with the incredibly talented Lucy Cohen.  Lucy is one of those people you meet once in a lifetime, someone who is so sensitive, empathetic, insightful to the point of appearing to be telepathic and so caring that she almost seems to be from a higher plane.

We met Lucy via ‘Unravelled’, the book I wrote a few years ago, in a roundabout way.  My literary agent, Andrew Lownie, introduced me to an agency called ‘Find a TV Expert’, through this agency a lady called Dee Kahlon found my profile and got in touch.  We met with her and she wanted to make a TV documentary about autism and introduced us to her preferred Director, Lucy.

It felt as though it was meant to be, love at first sight actually!  We adored Lucy and quickly came to trust her implicitly and we started filming.  The road to completing the film was anything but smooth and there were times when we all kept filming, really not knowing why.  There were no backers, no production company, no-one interested in the project which had long ceased to be a documentary about autism and had become, well, we didn’t really know what it was going to become.

And then through Lucy’s hard work and persistence a production company called Pulse became involved, they believed in the film and Lucy.  Funding came along a few months later and Lucy started to get the feel of what the final film would be.

It’s winning awards!

Four years after starting the whole process and 18 months of editing later and we have the finished article.  The film premiered at the London Film Festival, which was awesome and it won the Grierson Award for best documentary, unbelievable!

Now it’s been nominated for a BIFA (British Independent Film Awards) and we’re off to London on Sunday for the ceremony.  Who knows if the film will win but just to be nominated is too incredible for words, who knows what next?

In amongst all of this, Netflix became interested in the film long before the final edit was complete and snapped it up.  We were overjoyed, being available on Netflix meant that the film would be easily accessible globally and we hoped that it might just change some perceptions and maybe change a few lives.  The day of the release was a tense one for us, we had no idea how the film was going to be received, it could have gone either way.

But, we have been blown away by the response from people all over the world since it’s release on the 13th October.  We have received hundreds of messages from people thanking us for making the film and allowing people into our lives, and messages like the ones below have been so humbling but also, so awesome.

 

“Wow, what an amazing documentary. I’m in a real shitty place at the minute you and your family have really made me realise the possible devastation certain decisions could possibly have on others x”

 

“I watched your documentary today I just want to thank you. I have had suicidal thoughts lately & seeing the impact it has on children has made me stop”

 

These are excerpts from messages we’ve received and there have been so many others along the same lines.  We made the film in the hope that it might make a difference, we didn’t expect this but comments like these make the whole, difficult, four year process so incredibly worthwhile.

Thank goodness Lucy believed in the project and put everything into it for four years.

Thank goodness we all kept believing in her.

Thank goodness all the other people who became involved in the project believed in it as well.

We all hope that the film will be seen by as many people as possible and continue to make people think twice about mental health, autism and suicide

 

 

Autistica: An autism research charity that genuinely aims to help autistic people in a very real way

We aim to give the autism community a voice in everything we do. Through consultation and involvement we’ve made sure they don’t just direct our funded research, but autism science across the UK’  

I’ve been aware of Autistica for a very long time but didn’t know a huge amount about what they do.  Earlier this year I was speaking at an event at Coventry University and met a gentleman called Ed, he was lovely and told me a little about their work.  A couple of months ago we filmed a piece for ITV and Autistica were part of the report, we connected and I found out that they actually fund exactly the type of research I’ve always been an advocate of!

I’ve deliberately kept  a distance from all organisations as none of them seem to share my ethos with regard to autism, Autistica are different, they fund research that autistic people actually want.  They’re not looking for a cure, they’re not trying to change anyone, they just want to find ways to make their lives better.

I applaud that and would encourage everyone to join their ‘Discover’ Network, this is what they aim to do:-

Make a difference to people’s lives through research

Help researchers do bigger and better research

Cement the UK as a world leader in autism research

“Research is the only way to get the services we and future generations need. If we don’t get involved in research, nothing will change”

Autistic adult and parent

There are lots of ways to get involved and I believe we all should, check out what you can do to help and how you can be part of the revolution of change HERE

WELL DONE AUTISTICA, KEEP UP THE FANTASTIC WORK!

 

 

Kingdom of Us

After nearly four years of filming and production, the moment we’ve been waiting for is finally here!  It’s with a tiny bit of apprehension and a huge amount of excitement that we look forward to the World Premiere at the British Film Festival on the 7th October of our film about our journey over the last few years since Paul’s suicide.


Excitement because it’s been SUCH a long time in the making, and a tiny bit of apprehension because it’s such an intensely personal and real film which shows us ‘warts and all’.

We insisted from the very beginning that the film be totally real, no staging, no pretending to be something we’re not or vice versa, and that’s what it is…just us…as we are in real life.

We’re all so happy with the finished film and for that we have to thank the amazing Lucy Cohen (Director), not only a brilliant Director but an awesome person as well, we all love her dearly and really hope that the film may help in some way, if it touches one person it will have been worth every moment of the last four years.

Film trailer…

 

Tickets on sale here from 14/9/17

An Open Letter to Autism Sceptics…

This is an open letter to everyone who has heard my TED talk, seen me on TV, read about me in the press, or is familiar with my views on Autism.

I have, what are regarded by some, to be fairly unusual views on the subject of autism.

I make no apology for this!

I’ve lived with autism all my life (mother and two brothers on the spectrum and now numerous children on the spectrum), and have observed and analysed as well as learning from my experiences with them.  I haven’t followed ‘conventional’ views on how to bring up a child on the spectrum.

As with all things in life, ‘I did it my way’!

And how did ‘my way’ pan out?  Pretty good actually!  This summer holiday has seen most of them taking breaks (alone) in Europe.

Nikita flew to Madrid on her own, a long way from just a few years ago when the train to her new college was too much to ask of her.

Lorie will have been in Spain for a month with a family who speak very little English and, whilst she’s struggled, she’s consistently managed her anxiety well enough to enable her to stay.

Osborn is currently in Belgium with the Explorers and having a great time.

Kacie has been to Amsterdam on her own, flying for the first time in her life… on her own.

Would I have predicted this when they were young?  Absolutely no way!

People meet them now and assume they’ve always been able to cope – but that’s a very long way from the truth.

Nikita is autistic and also has learning difficulties. Along with that, her receptive language score is very low and she struggles to understand what people are saying to her.  And yet, here she is, defying everyone who told me she would need residential care by now, living the best life she can and, whilst having to cope with huge anxiety and communication difficulties.

Whenever I appear in the press, on TV etc… I’m always greeted with cries of ‘But, what about the non-verbal ones, the ones who will NEVER lead anything resembling a ‘normal’ life?”.

To them my answer is, “Why have you written your child off so readily?”.

Several of my children shouldn’t be leading ‘normal’ lives, and yet, here they are, confounding the experts’ predictions that they would never leave home, attend university or manage their lives without me.

In the same way that the ‘experts’ told Osborn and Pippa that they would NEVER be able to ride a bike because of their Cerebral Palsy… guess what?  Osborn is currently cycling around Belgium! Yes, he experiences pain, and yes, it’s a lot harder for him than his companions, but he’s never let small stuff like that hold him back!

I agree that there are people on the spectrum who struggle a lot more than most – but I still don’t believe they should be written off as not being able to have a good life.

May I point you in the direction of Carly Fleischmann?  Carly is totally non-verbal, has no control over her physical movements and struggles with the simplest of tasks, but that doesn’t mean there isn’t a beautiful person inside fighting to escape her limitations.

Carly’s father wrote a book called ‘Carly’s Voice‘. I read it years ago and it’s an inspirational story of parents who never gave up on their child.  To make life even more frustrating for Carly, she was a twin and watched her ‘neurotypical’ sister going to parties, playing dress up, learning to dance etc… all the things it turns out Carly was desperate to do herself.

How do we know that Carly wanted to do all these things when she’s completely non-verbal?  Her carers discovered one day that Carly could type, painfully slowly, with one finger that she had virtually no control over, but she was able to communicate for the first time in her life!  What she told the world was that she was very well aware of her autism and the huge limitations it placed upon her but, actually, her brain was working extremely well thank you!

How many other ‘severely’ autistic people are in the same situation as Carly a few years ago?  desperately wanting to tell the world that they’re in there, they just can’t get out?

How frustrating must that be, similar to ‘locked in syndrome’ but with a body that can move, they just have no control over it?

So many people in the world are doing things they shouldn’t be doing, Stephen Hawking being one of them.  He shouldn’t be a Theoretical Physicist, he should be rotting in some institution somewhere if we all take the view that our lives revolve around our bodies ability to function perfectly.

So, what did I do differently with my kids?  I pushed them, I believed in them, I constantly made them do things they hated me for and pushed them out of their comfort zones, gently and slowly, but I still pushed them.

If they wanted to try something, Explorers etc… they were never allowed to give up after the first time. I made them go again and again, tantrums, meltdowns, shutdowns and all.

they had to go on enough occasions that they acclimatised to the change and then they were allowed to decide they weren’t enjoying it.  And, guess what?  Most of the time they decided to carry on because they’d overcome the initial anxiety.

And it turns out that one of the world’s greatest autism advocates (herself on the autistic spectrum), Temple Grandin, agrees with me (see link).

So many parents are afraid of the reaction they receive from their autistic child and surrender immediately, most of the time. The meltdown is fear of the unknown, so if the unknown is never experienced, how can the fear possibly diminish?

I nearly gave up on Nikita. I was so close to accepting that she would need full time care in a residential setting, it breaks my heart to realise that I would have been doing her such a disservice.  I would have been ‘stealing’ her life because of my negative beliefs.

She taught me that we should NEVER EVER give up on anyone, no matter how severe their challenges and if we need further proof, I point you back towards Carly.  Watch the video, even just a few seconds, and then tell me that her life isn’t worth living; that her parents should have given up on her?  Carly has a wicked sense of humour and the video of her interviewing Chaning Tatum via her electronic voice on her computer is absolutely hilarious.

No doubt my views will annoy some people.

But maybe some people will start to understand the message that, we as a family, are trying to spread.  The message is:

  1. Believe in people; never write them off.
  2. Be open minded enough to accept that your own attitude will limit the potential of the people around you. Lorie believes her autism is a ‘Super Power’ because that’s what I taught her to believe.
  3. Disability is a word that should be erased from the dictionary.  To disable something is to ‘render it useless’, and I’ve yet to meet but a handful of people who fit this description.
  4. And don’t judge people who appear to be OK. their past and current  struggles could tell a very different story.

My children want to advocate for autistic people as well as those challenged with mental health struggles because they’ve watched each other overcome so much and understand what the possibilities are.

They want the world to focus on the potential of each and every person and stop comparing people when they do not have the knowledge to be able to judge.

My children appear to be OK, and on a lot of levels they cope very well considering how challenging their lives are.

Underneath it’s a very different story, and they struggle constantly with pretty much everything.

They’re just determined not to let their limitations hold them back if they can possibly help it.

Please don’t let your imposed limitations hold them back either.

TedX Talk

Book ‘Unravelled’

Film ‘Kingdom of Us’