#no voice A parent’s voice for those who have #no voice of their own

So, this week is autism awareness week but awareness of what?

That it’s fine to be autistic? That we should celebrate neurodiversity?

There is a new hashtag this week  #knowyournormal . But is it normal to smear your own faeces on the wall as one of my sons did for years? Is it normal to bite or injure yourself deliberately in rage? Is it normal not to be able to communicate even your basic needs?

It is not fine at all to have autism for many children and adults, those adults that you never see because they are hidden away in residential settings being cared for twenty four hours a day. Those children who are awake half the night, wrecking havoc in their own homes.

I did a phone in on Radio 5 last year and almost unanimously everyone who listened was shocked at one caller talking about his young son who smeared faeces, tore his clothes off, threw his mattress out of the window and whose parents  were at their wit’s end with exhaustion and fear for what would become of him.

How can we celebrate this? We can’t and we shouldn’t.

We should be using this week to raise awareness of all those young children who have #no voice of their own, literally ‘no voice’ as they are non verbal. We as parents and carers need to shout out on their behalf.

It’s fine for adults with high functioning autism to want acceptance for who they are, their autism isn’t excluding them from life. They can shout out for themselves and are using this week to do so.

The week should also be for awareness that autism can be immeasurably hard for those families and those children severely affected by it. They are the ones who need acknowledgement and vital help to learn to communicate and to live in an often hostile world.

We need to show the other side of autism, the side that people don’t want to think about.  #no voice.

 

Light it up blue for Autism

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What are the odds on having another ASD child?

I hope most people reading about my boys are inspired by our story.

But, sometimes, I worry that I terrify people when they read that all four of our boys have classic autism? Perhaps you already have one child with autism and reading about our family  makes you think that your risk of having another child with autism is really high?

Can I start by saying that I personally know no other family like ours, where all four have classic autism. We are rare, very rare. There are familes with more than one child ‘on the spectrum’ but that might encompass a very broad range and include children with ADHD or dyspraxia, conditions which may classify them as also being ‘on the spectrum’ but not quite in the way that full blown classic autism is. So, there are perhaps a handful of families like ours out there but honestly, the risks are much lower than we as a family seem to project.

We consulted the genetics departments of two leading London hopsitals after we had three boys diagnosed and I still wanted to try for another baby. One gave us ‘odds’ of 50% after three children in a row (the twins are non-identical) but the other said our risk would always be 20%, however many children we went on to have.

The usual risk is given as around an 8% chance of another child in the family having autism when you already have one diagnosed. So even our personal risk only increased from 8% to 20%.

What if there were a pre natal test to predict autism ? What would we even do with the results? How could we know how the autism predicted by the test would impact on the child? All I knew was that our fourth child was a boy and that to me meant his risk was increased just because he was a boy and the more severe form of autism is more prevalant in boys than in girls.

And I was right; but I have never, ever regretted taking that  20% ‘risk’. My fourth son seems to be the least affected by his autism of my four boys in the fact that although he had no language at diagnosis, fortunately for us his behaviours were far less serious than his older brothers’. I hope though, that I would never have regretted that risk however he was as it was my choice to have another child.

Most of us make a choice to have children and we hope that our children will be unaffected by disability but when they are, it doesn’t make us love them less however much it challenges us as parents.

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All grown up

‘Being the parent of a child with special needs can be one of the most exhausting roles you have ever had, but also one of the most rewarding as you watch your child develop skills you thought they might never acquire’. – From the conclusion of my book, A Parent’s Guide to Coping with Autism.

I used to say when the boys were very young and only had a few words that one of my goals for them one day when they grew up was that they would be able to go to the pub and order a drink.

This week, it happened.

Thomas went running with the group from the Up and Running shop, they went to the pub afterwards for farewell drinks. He went with them and bought a cider and then even came home on the bus alone. So, not just one achievement but two as he can now also travel independently for short distances.

Sometimes, dreams become reality.

(Thomas wearing his 18th birthday present, a leather jacket)

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So the boys turned 18 – now what?

Our non – identical twins have turned 18. While looking very non identical and being very dissimilar in so many ways, they both have autism. They were diagnosed the same day.

If there are ‘types’ of autism, they have the same ‘type’ which means that they both have high non verbal IQ levels probably above average, no learning disability as such but severe language disorder which means their language lies within the bottom 5 percentile.

They can mix well socially  now due to many years of ABA therapy from when they were diagnosed at just 3, so although they had quite severe behaviours then, they no longer have many behaviours which distinguish them from others.    They are of course very delayed in comparison to their peers and are still mostly unable to look after themselves.

At 18, they have never had girlfriends or kissed a girl ( I say girlfriends because I think their sexual orientation is towards girls ) but they have never had the opportunity to approach girls in that way. They have never been left alone at home and don’t take themselves out and about.They understand money but wouldn’t be able to go shopping and choose and buy clothes for themselves so until now, their lives have been quite safe and managed by us.

But…suddenly they are adults.  So we have been challenged. At 7.30 am yesterday T declared to his Dad that he would not be coming home in the taxi from school the next day as he could now travel home alone on the train as he is ‘an adult now’. He is very rigid and there is no room for manouevre so we had to leave that one until we could talk to him once he calmed down. Then yesterday afternoon, I got a call from his school to discuss how he now wants to go out every lunch and break time alone in the streets around his central London school. Again, he lost his temper and no one could talk to him until he had calmed down.

He has also ‘declared’ that he no longer needs carers to take him out in the holidays as he will spend his days running. While an hour a day running might be good to aim for, full days may not be.

His twin, B, meanwhile is happy to continue going to school in the taxi but has decided he will holiday and travel alone in England visiting steam railways, his passion.

On a lighter note, he wants to know how it feels to be drunk and thinks he would like to try this out safely at home. Last year on holiday, he refused all alcohol as he was scared of what it might do to him. So, actually I think this is quite a positive step forward and a very mature attitude to alcohol but it’s only because of his anxiety and not because of his emotional maturity.

So, nothing has changed but everything has changed as far as the boys are concerned and it’s hard work for us at the moment trying to explain why they can’t do the things they think they should be able or allowed to do. But, it’s so positive that they want to grow up and not be dependent and we will work on that independence in small stages like we have spent their lives doing but not in one great leap on the day that they turned 18.

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