Autism : Allowing the worst

il_340x270.557779029_ss3t

Ugh! Ugh! Ugh!!!

I went into Ian’s room first thing this morning and horror! He was standing in the middle of his bedroom floor with his head to one side, and his face held the most spastic expression you can imagine, and it was all twitching.  His face, his hands, his torso.  His body was practically vibrating with the speed of it all …..

Dear God, it was awful!

I took his face gently in my hands and tried to bring him back.

“Look at me,” I said to him, my heart twisting at the sight of this awfulness.

Look at me!” I had to insist.

He remembered himself and his body fell still as he gazed into my eyes.  But the damage was done.  I could not unsee what I had seen. My heart was bent out of shape, and it would take a lot more than one clear look to repair it …

When we first started Ian’s therapy programme, I don’t think it was ever our intention to cure Ian, as such, but we definitely went into it with a view to moulding his behaviour into something more socially acceptable.  Rightly or wrongly, that was our aim.  If it could be done, we would do it.  I had read that the less time Ian was allowed to behave in an autistic manner, the more it would become his habit to behave otherwise.  Perhaps if we worked hard enough, behaving in a non-autistic manner would become his life-habit.

The interesting thing was that with our Ian, the changes came about really quickly.  It was almost – when he was young – as though the autism was a thin veneer and we could penetrate it if we worked with enough determination.  And make no bones about it, we were determined.

It wasn’t that I was embarrassed by Ian’s behaviour in public.  Nothing like that.  After all, I had survived Rory;  by comparison, Ian was angelic!  It was more about wanting the best for him; wanting the most for him; and this, we felt, would be more likely without the worst of the more obvious side of autism; the hand-flapping, the face-pulling, the posturing or the high-pitched shrieking.

It worked.  In fact, it worked exceptionally well.  We could take Ian anywhere with us and he would be beautifully co-operative.  At home, he was responsive, bright, clever, learning, funny, and good company.  Don’t get me wrong, he was still profoundly autistic.  He was just more there than not, more interactive than shut off, more bright light than twenty watt bulb.

That was then.

You see, if you accept that someone is autistic, and allow them to behave as they please – because they’re autistic, aren’t they, and that’s how autistic people behave – then that’s what you’re going to get.  Despite everything.

Despite all the patience.

Despite all that dedication.

Despite all the hours and hours.

This is what has happened with our Ian.  With the expectation of good behaviour taken out of the equation, he indulges in the worst of the worst.  And today, the worst of the worst is even worse because he’s older, bigger, more determined, and much further away than he ever was.

His beautiful life-habit of connectedness and clear-eyed brightness-of-spirit and responsiveness has been swept away by people who mean well but who have entirely undone what we worked so hard to achieve.

Worst of it all, I don’t think Ian is happy.  I don’t think he’s even content.

Maybe it isn’t right to insist that someone do as you say, all day, every day. But what if that brings them to a place where they can obviously start to find joy in life? And what if taking that away from them – in the interests of giving them autonomy – actually does them more harm than good, and steals that joy away?

What I’ve learned about having an autistic child is that you can’t take anything for granted.  In the long run, your special-needs child, it seems, does not actually belong to you.  What you say, and the way you do things, are apparently not as important as someone else’s methodology. You can talk the hind legs off a donkey, explaining how things are done in your family, how to get the best out of Ian, but the past – that autistic child’s past, and with it all his learning and behaviour management – no longer belongs to him.  Now, other people know better, and no matter what you say or how often you say it, they will do things their way.

And that precious brightness will fade from his eyes, even as you watch.

And you will get notes about ‘behaviour problems’ and ‘anxiety’ and ‘misbehaviour at mealtimes’ which you’ve never encountered before, and which really, really surprise you, and you don’t say anything, because you know it’s not worth it.

You know what isn’t being done.

I’ve said it before, and I’ll say it again:

Put the child first, the diagnosis second

If you treat him like he’s autistic, that’s exactly what you’re going to get, no matter what he can do or who he used to be.

He will be autistic, because that’s all you see.

 

tree-is-blown

blog - curlicues

“From the Inside – Raising, teaching, loving an autistic child” is available in eBook on Amazon.com, and in paperback directly from the publishers, Emuink.ie

The blog that bounced

Well, that was interesting.

Usually I try to write about the positive, the useful and the helpful, or at least something vaguely motivating. I try to keep my negative thoughts to myself, never sure if anyone really wants to read about the darkest side of having a child with special needs.

But this latest blog – self-indulgent, filled with angst and anger – has ricocheted around the world and given me my best readership figures ever.

Whaaaaat?

Do people really want raw emotion? Me at my worst?

It would seem so – although with so few comments, it’s hard to be sure.

And to my reader in Brazil who checks the blog every day to see if I have posted anything new:  Thank you. You make me feel appreciated, and motivate me to write more.

So, let’s see where this goes from here …

 

the scottish pic

Autism: Coming to terms with the changes

A couple of years ago, I had an adjustment to make.  My son was no longer in school, he had moved into Adult Services. The time for learning, it seemed, was past.

I didn’t take it well.  The frustration seethed inside me, and in true INFJ fashion, I vented in written form.  I post this today just to show that being the parent of a child with special needs is hard in ways you cannot anticipate.

I have moved on now.  I have accepted.  But back then, acceptance was the last thing on my mind ….

curlicue
It’s MY problem. Not theirs. Not even Ian’s. Mine.

I just feel they are selling him short. Dumbing him down. Doing him and his extraordinary abilities a disservice.

I can’t read these notes any more. They make me too angry. Really hit-someone angry. I can’t take it. I have to raise my hands and surrender to them. Completely. It’s their show now.

I had my turn.

Just let them not forget that everything he knows, everything he can do, is because of me.

Me.

Not them, and their quaint little ways. Not them, with their puzzles and ‘table time’ and ‘helping Ian get over’ an anxiety he never had.

Me.

And now I have to swallow it, all this anger and hurt. I feel let down in ways I didn’t even know existed. I feel belittled by it. Made worthless. All that work, all those years of dedication and persistence, worth nothing in the eyes of these people.  They take Ian back and back yet further, and I remember…

I remember the joy I felt when I taught Ian that, all those years ago. When it was new to him, and his eyes shone with understanding, and his mouth curved when I praised him. And we mastered it together and moved on, and he was happy, and I was happy, and the joy we shared was our private wonderland.

IMG_3733

Am I so utterly wrong in all this? Should I really just be able to step back and say ‘It doesn’t matter any more’?

I poured my heart into teaching my son. Everything I had. It took over my life, and perhaps for the first time ever, I felt as though I had a purpose.

Now, who am I?

What am I?

I feel utterly betrayed.

curlicue

 

Sometimes, lessons are hard but the pain teaches us, if we let it.

Now, I am just the mother of an autistic man who – if he’s properly reminded – can still do amazing things.

Our journey continues…

IMG_0637

“From the Inside – Raising, teaching, loving an autistic child” is available on Amazon.com as an eBook, and in paperback directly from the publishers, EmuInk.ie

 

 

Autism: Teaching a simple exercise

Today I’m going to take a simple exercise I used with Ian, and look at it in detail.

The tree.

Anyone can draw a simple tree.  You start with two lines like this –

IMG_4333

And then add two more –

IMG_4336

And then do twigs, and add a few leaves –

IMG_4338

Voila! A recognisable tree.

Then you turn your tree into a simple question-and-answer task.  For example ‘How many leaves are on the tree?’ and leave a line for a response.

It seems so simple and straightforward, doesn’t it?  We glance at the tree, our eyes rove over the leaves, and we know the answer.

Enter the autistic child, for whom nothing is simple or straightforward, and we have to look at our question again.

What does it pre-suppose?

‘How many?’

Immediately, we are faced with the notion of counting.

Does the child understand the term ‘how many?’, and can he count?  – and then give a clear answer for the total?

Can he point clearly to each leaf?

And once he has started counting, does he know how to stop?

Let’s look at the next word – ‘leaves’.  Suddenly we are faced with plurals, which is an exercise in itself.

‘Leaves’ belongs in that group of more complex plurals, way beyond ‘cup / cups’ or ‘book / books’.  It’s even beyond ‘house / houses’ and ‘horse / horses’.  We almost at the end of the line: child / children; leaf / leaves – heading towards the worst of them all:  tooth / teeth; mouse / mice; goose / geese, etc.

IMG_4339

Does the child know what a ‘leaf’ is?  Could he pick one up off the ground and show it to you? And could he show you which tree it came from? — Oh sorry, that’s a different exercise!

If the child understands what ‘leaves’ are, he can count them.  Good.

Let’s look at ‘on’ next.   Here we get to the murky area of prepositions: On, under, over, in, etc.

This can be presented as a task in itself – ‘Put the toy in the box’ or ‘Put the toy under the box’ or ‘Put the toy behind the box’.  There’s hours of fun, right there. But until the preposition is understood, the exercise can go no further than counting the leaves – not where they are.

And lastly, of course, we get to ‘the tree’.

Does the child know a tree? Will he point one out to you? Touch it, if you ask him? Recognise that there are different types, some big, some small? And most importantly, I suppose, does he understand your drawn representation as a tree?

Only if you are sure that ALL of these aspects are fixed in the autistic child’s mind can you present a task like this one. You cannot pre-suppose anything, and you cannot take it for granted that they ‘just know’. If you want to teach, and make real, meaningful progress, you have to teach everything, step by step.

Then – and only then – you can take the simple tree task, and start playing around with it.  First you could increase the number of leaves (making it harder to count them all);  then you could draw a few leaves on the ground, so –

IMG_4344

using the leaves ‘on’ the tree as a decoy, and asking ‘How many leaves are under the tree?’ to catch any autistic requirement for sameness or patterning.

Then you can draw other things, like birds (‘in the tree’), or flowers (‘under the tree’), moving away from the idea of counting ‘leaves’ at all.

IMG_4343

And so it goes.

Small increments, leading to wonderful moments of achievement.  And you don’t have to be a qualified teacher to do this, either. You just need patience, and determination to make a difference.

blog - curlicues

Autism: More about waiting …

In my previous blog (part three of my lecture notes – Autism: What the books don’t tell you), I talked about the importance of waiting for a response. I also suggested a five-second time-frame to wait for that response.

How hard it was for me to put into words something I do instinctively!  I have never counted seconds in my head.  I have never even thought about ‘time to hear, process, search for the correct response, find the correct response, inhale prior to speech’.

I watch.  I feel the moment.

Of course, when I thought about trying to explain this to students, I had to find a way that would make sense, and give a person a simple time-frame they easily could remember and put into practice.  So my ‘five second rule’ came to mind.

Five seconds out of your day.

Absolutely.

But that’s five seconds for each time, not just for a response to ‘Good morning’ – the example I gave in my blog.  Every time you look for an answer.  ‘Would you like some juice?’  ‘Have you finished?’ Whatever the question, the waiting is the same.  In total, over the span of a day, it may add up to a few minutes, but that’s a few minutes of useful work.  A few minutes of time well spent.  A few minutes in which you have respected the autistic person’s need for time to process, time in which you show an understanding of the very nature of autism.

Those few minutes where you waited may very well be the best work you ever do.

clock 2

Not long ago, my husband and I went to a local centre where they provide daily care for adults with a variety of special needs.  We were shown around to see whether it was a potential day placement for our son, Ian.  As it turned out, it quickly became obvious that it wasn’t suitable for Ian at all, as they run an ‘open door’ policy, and Ian would have taken the gap in half a morning and we’d still be looking for him.

In one section of the building, there is a framing shop run by two autistic men.  We were led in and past one chap who was standing behind a work table, cutting frames.  As our little procession passed, we greeted him and were shown into another workshop, and after we’d seen that, we turned to leave.  The three people who work there said a cheery goodbye to this chap behind his work bench, and carried on, walking past him and out the door.  I didn’t.  I paused.  “Goodbye,” I said, looking at him.  I stood quietly and waited – with no expectation of a response. I didn’t even know if he was verbal.

He glanced at me and a little smile appeared on his face.  After a brief pause, he said “Goodbye”.  I grinned, because I could see he knew what I was doing, and he grinned, because he knew I knew it.  He had answered me, politely and appropriately.  Perfectly.

I left walking on air because of the joy in that connection.

But the people who worked with him every day, who knew him best, walked past him, talked at him, without pausing to give him time to respond.  I found that extraordinary, and – in my heart of hearts  – utterly unacceptable.

A few seconds out of your day …

If we could slow ourselves down, if we could find it in ourselves to pause for those few brief seconds, how different would our dealings with autistic people be?  How much more verbal do you think we might find them, if we actually gave them time to process and respond?

I suspect it might be a very different world indeed.

 

clock 3

Autism: What the books don’t tell you (3)

Part three of my lecture notes.

blog - curlicues

Waiting

I think I might be right in saying Ireland is a nation of talkers, hmm?  And waiting for someone else to speak may not be the highest thing on the agenda.

So what does this mean for the child with special needs?

More than once, I have heard my son greeted like this:  GoodmorningIanHow’reyoudoing?Yougood?GrandLet’sgo.”

I’ve written that as one long string of words because that’s how the autistic person hears it.  A blur.  A continuous stream of sound.  Nonsense which requires neither acknowledgment nor response.

And my response to it is this:

I didn’t spend hundreds of hours helping my son to speak for you to ignore the possibility of him speaking!

The autistic mind needs time to: (count them off on your fingers)  —

1) hear what you say,

2) process what you say,

3) search for the correct response,

4) find the correct response,

5) and breathe in, prior to speaking.

IMG_4329

So, if we generously give him a clear second for each of those things, what does that look like?

By way of demonstration, I say out loud “Good morning, Ian” and count off the seconds on my fingers, before answering myself “Good morning, Mummy”.

Five seconds out of your day.

Of course, because Ian is used to being asked, and knows there is an expectation of a response from us, there is no pause.  He answers us straight away because he’s had lots of practice.

But why might the autistic person need this time?  Well, we all know they may experience processing difficulties.  And if everyone knows this, the notion of giving an autistic person time to process should not be revolutionary.  After all, do they or do they not have special needs?  And if we acknowledge that, should we not be modifying our behaviour just that little bit to assist them?

However, that’s only one way of looking at it.  What if we look at it this way instead:   What if the autistic person sees everything?  Hears everything?  And remembers everything.  That’s a lot of information to sort through to find the answer to your question.

So you wait.

The way in which you wait is important, too.  There’s a saying that goes with dealing with horses:  “If you think it will take 15 minutes, it will take all day.  However, if you’re prepared for it to take all day, it will only take 15 minutes.”  It’s about finding that space in which nothing else matters but that moment.  A space in which ‘time’ does not exist.  Where there is no agenda.  No ‘what comes next?’  No ego.  No impatience.

There is only waiting.

Because if you can find that place, THAT is where the magic happens.  THAT is where you connect with the working mind.

IMG_4330

 

There is an obvious question here, of course:  What if I wait, and nothing happens?

Well, you have several options —

  • You can repeat yourself, and wait again and see what happens.
  • You can repeat yourself, and model the correct answer (“Good morning, Ian … Good morning, Mummy”) and pray for some echolalia.
  • Or you can smile, and move on, sure in the knowledge that the autistic person has noticed. Because, whether they’re looking at you or not, they notice everything.  And if they noticed that you waited, they may wonder what you were waiting for, OR, better yet, the next time they may fill the void with something of their own.

 

And how exciting would that be?

 

blog - curlicues

 

Autism: What the books don’t tell you (2)

Over the past couple of months, I have given brief lectures to Social Care and Psychology students on the subject of autism.  Below is part two of my lecture notes.

blog - curlicues

I’m now going to talk to you about my personal theory of autism.

While I was home-schooling Ian, I spent many wakeful nights thinking about autism and trying to find a way of explaining how I see it.  I knew autism but I also knew there was something else, a kernel of something precious and individual, and that if you could connect with it, extraordinary things might happen.

Because this kernel within was the working mind.

I call it my Jam Donut Theory, and it looks like this —

IMG_4326

 

When the child is young, the ‘dough’ is fresh and soft.  Malleable.  With enough work, inroads can be made through the ‘dough’ to the working mind within.  If you work hard enough, for long enough, these inroads can become permanent channels of access —

IMG_4325

 

And, if you get it right, the working mind within may expand and reach back to meet you—

IMG_4327

 

As the child ages, the ‘dough’ hardens, becomes denser, and harder to get through.  But the working mind within is still there, still sparking, possibly even looking for a way out.  I do not like to think about what happens when it gets ignored…

IMG_4328

 

Let me tell you a short story which illustrates what I mean about the working mind.

Not that long ago, my husband and I attended a party given by the group that cater for Ian every day.  It was a busy event.  Several other groups were also attending, so there were young adults with all different kinds of disabilities.  It was noisy and chaotic and wonderful.

One young lass, let’s call her Mary, went around the room shaking everyone’s hand and asking “What’s your name?”  That was her ‘thing’.  Round and round she went, and when she got to me, I took her soft hand gently in mine and told her my name, speaking clearly for her to catch it. Off she went again, round the room.  “What’s your name? What’s your name?”  I followed her progress.

Mary came back to me, took my hand and again asked me her question.  I looked straight into her eyes and said “You know my name.  I told you.  Can you remember it?”

Mary went very still.

I stood quietly and waited.

After many long empty seconds, she frowned and said “Fiona.  Your name’s Fiona.”

I smiled at her.  “Yes,” I said.  “Well done!  You remembered.”

After that, Mary wouldn’t leave me alone.  She clung like a limpet.  My new BFF.  Her mother became slightly embarrassed by her behaviour;  the carers who knew her were casting us curious glances.  I didn’t mind.  I was in the zone then, and Mary was delightful.

However, she was manoeuvred away from me, and shortly after that we had to leave.

It was only on the journey home, thinking about what had happened, that I felt really sad.  I realised that potentially for the first time in her life, someone had discounted the notion of everything she couldn’t do, and credited her with a working mind.

And clinging to me like a limpet was her way of saying “Thank you”.

I take the class back to the jam donut —

IMG_4330

 

and remind them that behaviour is just behaviour.  It is not the core of who that person is.  And it is important to remember that although the ‘dough’ may not age, the working mind does.  My son may behave like a strange four-year-old, but he’s twenty.  You cannot treat him like he’s four because he’s not.  You cannot keep putting the same infantile tasks in front of him just because he behaves in a way that makes you think they may be ‘age-appropriate’.  They’re not.  He’s seen them before, and he’s bored.

Challenge the working mind, or stop wasting his time.

 

end of part two

blog - curlicues