Being grateful for speech – an everyday miracle

I don’t think those without a child with severe additional needs can ever truly understand how amazing it is when your child is able to do something that everyone else takes for granted.

I used to listen in amazement to very small children talking in whole sentences, arguing and discussing and having conversations. Tiny, little children. How did they just learn to do that? With no help? No obvious teaching? A miracle to those of us whose children could not even say a single word.

Did their mothers realise how incredible it was? Did they just take it for granted that their child would learn to speak with no assistance?

What is it that prevented my boys from learning to speak? Autism. Would they have learnt to talk without help? We will never know. I did not want to leave it to chance, to ‘wait and see’ like the professionals sometimes advise.

I remember the day Benjamin, aged three and a bit, finally made the right sound ‘w’ because he wanted water to gush out of a hosepipe. That was a few weeks after starting an intensive ABA (applied behavior analysis) programme at home. His tutor was out in the garden with him for hours, holding his thumb over the end of the hosepipe and lifting it off every time Benjamin said ‘w’.  A eureka moment as we knew that Benjamin had finally made the connection that those sounds which came out of our mouths had a purpose, a meaning, and if he learnt them, he would have a way of communicating with us.

I never take it for granted that any of my boys can talk now. For all of them, it was hard earned and took literally years and years of help and support for them to be able to do so. All four of them started ABA programmes at a very young age (between two and three years old). They all needed intensive help to learn to talk and to use language meaningfully. Echolalia – when a child repeats back words – may sound like they know what they are saying but is not useful language at all.  ‘Scripting’ – when a child repeats almost word for word, full chunks of language that they have memorised from TV programmes or adverts – is also meaningless.

Teaching a child with autism to learn to talk is a complicated process. Labelling objects with a name should be straightforward but it isn’t. If you get it wrong, it is hard to ‘unteach’ it.  For example, if you were to say ‘ow, hot’ to stop a child touching a hot cup of tea, they might tell by your gestures not to touch it, but later when wanting a drink, might ask you for a ‘hot’. They have associated the word ‘hot’ with a cup. You will not give them a drink as you don’t understand what they are asking for. They in turn may get very frustrated with you for not giving them a drink.  Teaching attributes such as hot, cold, wet, dry are even harder to teach. It is so much more complex than we think it will be, for our children to learn to talk, to learn something that other children acquire naturally.

I am so, so thankful that my boys can talk and ask for what they need. They don’t all have full language in the way that you or I reading this may have, but the difference from them being non verbal to being able to have conversations never ceases to amaze me.

It’s a huge skill, speech, one that we don’t fully appreciate until it is absent.

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Should there be a cure for autism?

When I wrote my book, a few years ago, I decided I wanted to write about the emotional side of autism. The effect autism has on us as parents , the effect it has on our children and on those who encounter them . Which means basically, everyone in society as a whole.  As a parent whose four boys were all diagnosed at the age of two with classic, severe autism, the audience for my book was intended for parents whose children had a similar level of disability and for those working with them.

Although my boys are now deemed high functioning and living a life way, way beyond all expectations for them, thanks to ABA (applied behaviour analysis) and many years of hard work from us, I still wish that they had never been affected by autism in the way that they were.

From my chapter on ‘coping emotionally with a diagnosis’ , the acceptance stage, in my book A Parent’s Guide to Coping with Autism.

There are some people who are so acceptant of their child’s autism that they do not feel a need to fight so hard and are able to love and appreciate their child for who they are. Sometimes, people will say that they would not  change their child and remove the autism even if they could, as it is part of who their child is. For the majority of parents, though, we would do anything to remove the negative aspects of our child’s autism. It does not mean that we do not accept or love our children. For me, it is because I love them so much that I wish an easier life for them.’

In the past few years, the neurodiversity movement has taken a strong hold over the perception of what autism now means. The desire for a cure is seen as being wrong by many. The amalgamation of all types of autism into one umbrella diagnosis has muddied the waters. No one any longer knows what autism really means. How it affects the child or adult.  To those at the higher end of the spectrum, even a discussion around a possible cure for autism is seen as a slur, a threat, that they have something which is not desirable. For many, a cure is the last thing they want. Acceptance is what they desire.

I still stand by what I wrote a few years ago. I know I have been lucky that my boys have changed so much so that people meeting them for the first time, often think mistakenly that they have always been as they are now ie fully verbal and to outward appearances, perhaps having a diagnosis that would previously have been known as Asperger’s.  They all had severe, non verbal autism when diagnosed aged two. I will always view and campaign for recognition of autism at the more severe end of the spectrum.

It has taken years and years of hard work by them and us for them to appear as they do now. Were I able to go back in time to when they were first diagnosed and be able to wave a magic wand and remove their autism, I would not hesitate to do so.  The pain and anguish they suffered as young children, unable to voice their needs and wants, unable to have a say in their lives was awful to witness. We had to do everything we could to diminish the effect autism had on their lives.

I see children now, who were like my boys were, distressed by noise, overwhelmed by sensory overload, frustrated, bewildered. Not enjoying the life we all want for our children to have. A happy life.

Even now, I can still see the people my boys would be without autism. We have managed to help them so much but we cannot do the impossible, take every aspect of their autism away. There is no point in continually being upset by what might have been, we need to work with what we have now and it is good. Their lives are good now.

I am absolutely resolutely against pre natal screening for autism. We knew our youngest was another boy and for us that meant the risks of autism were high. But a test would not have changed anything for us, except perhaps the possibility of starting therapy from birth if that were possible.

But I do wish there was more to help those with autism, to relieve more of the associated problems it causes. We were lucky to have ABA to help our boys but that is a very lengthy, expensive, long term therapy and even though it can be very successful for some children, it does not restore their young childhoods or take their autism away.

Be wary of anyone who promises to ‘cure’ your child. Currently there is no cure.

Should there be a cure for autism?