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’

4 thoughts on “An Open Letter to Autism Sceptics…

  1. You give us all hope. Don’t pay any mind to those who don’t get it. I am inspired daily by you. The movie is something I cannot wait to see.

  2. Amazing, heart wrenching but also heart warming “The Kingdom of Us” and your TedXTalk has affirmed my belief that a child with autism (my 5 year old grandson is autistic) should be encouraged & rewarded for his accomplishments. Expecting “less” from an autistic child than a neuro normal one does a great disservice.

  3. Absolutely Amazing. I saw the film “The Kingdom of us” and found it compelling and heartwrenching to watch but at the same time was amazed and comforted by how this amazing family and incredible mother tackled the “taboo” of Autism. We need more people like Vikie.

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