Autism : From the Inside – Chapter Twenty-Three

This is a particularly difficult period of time for me to write about. It seemed that everything I had worked so hard to achieve with Ian came crashing down all at once, leaving me feeling so utterly defeated I didn’t know how I would ever be able to continue.  

On the 28th of January 2007, I wrote a desperate email to my friends, Kirsty, Ruth, and another speech therapist friend, Deborah –

“How quickly things can change.

“No sooner were we commenting on the incessant wind affecting Ian’s auditory processing than the wind dropped, the sun shone again, and Ian’s behaviour took the most unexpected and violent turn for the worse.

“On Monday afternoon when Neil phoned me from work, I broke the news that Ian had spent one whole hour of that morning screaming at me, then he’d spent the next hour trying to hurt me, either with his head or his hands.

“In between screaming bouts and having to hold his hands down and avoid his falling head (which he aimed at my wrists – ouch!), Ian answered my questions promptly and accurately, and completed his worksheets well, even though his writing wasn’t quite as steady as usual. At the end of the most difficult morning we’ve ever spent together, Ian’s work record was a completely inaccurate reflection of his behaviour. My shoulder was stinging from the couple of times I wasn’t quite quick enough and Ian smacked my bare skin with his pencil, and my ears were ringing from his glass-shattering screams.

“Tuesday was not quite a repeat performance because I altered various things to avoid the usual pattern, but work wasn’t really on the agenda.

“On Wednesday we went out. Thankfully Ian was his usual well-behaved self in public.

“On Thursday, Neil was at home. He wasn’t feeling well and had decided that missing a moderately busy day at work by resting in bed would leave him strong enough to deal with Friday, a very busy and unmissable day. Halfway through the morning he came through to the kitchen and stood at the door watching Ian yelling at me, as he had for the past hour.

“Do you need some help?” he asked.

“Probably,” I smiled ruefully.

Interestingly, after Ian realised that his Dad was home, he stopped trying to hit me and I could finally let go of his wrists.

We battled through another hour with some almost pleasant, quiet moments – shattered by Ian’s screams the minute I opened my mouth to speak.

On Friday, we sat together in the lounge, just mother and son. Instead of asking him to read to me, I read to him, and he sat in my lap with my arms around him. It was a welcome relief just to be friends.

It’s strange how you find something in yourself you didn’t know you had. Last week I found a calm, quiet place deep inside me where nothing Ian did could touch me. I wasn’t affected by his noise, nor by his repeated attempts to catch me unawares with a hand-flick or a head-butt. My voice was soft and serene, and my composure couldn’t be rattled for as long as I wanted to sit and try to work with my child.

After those difficult mornings, I led Ian to his bedroom, quietly shut his door, and wandered through to our lounge to sit for a long, long time simply staring at our beautiful view, trying to work out what had happened to the gentle, loving, happy child Ian used to be.

Do I need help, Neil asked me. Oh boy, do I ever! The eleven-year-old autistic child is a force to be reckoned with, and I’m all reckoned out. I don’t have any answers to the million questions I’ve asked myself, but I do know that for Ian there has to be a time when education must take a back seat and just being a person, trying to keep a grip on his world, must be more important. Perhaps he has learned all he can for now and needs time to just be.

That’s all I wanted to say.”

The responses I received from my friends deserve to be included almost in their entirety because they were so beautifully written, so concerned, so wholly supportive, and so very interesting. From Kirsty –


”Dear, dear Fiona

How I wish I was there!! Just to give you a hug, make you a cup of tea and lavish support. Because you do sound so alone. And I understand that calm, quiet place deep inside where nothing Ian does can touch you, but I also know it’s a defence mechanism, and, though this may be hard to hear, it is ABUSE, albeit from someone who has a condition and has little other forms of power and control, and it will have the same effect on you as if anyone else you loved was trying to hit, head-butt and hurt you. I once worked with an eleven-year-old (til she was thirteen) who used to bite and pinch me when she got mad, and sometimes for no reason at all. I took it and took it and took it and took it. I developed that “calm, quiet place deep inside” where nothing could touch me. What was the result over time? Deep, dark depression that took me years to get over. And a willingness to let other children abuse me, again and again. It’s not right. And it’s not right to take it.

My instinctive advice to you is this: stop working with him. Take him for long, long walks instead, for a week at least. Show no interest in work at all. Give yourself a rest. If he tries to hurt you, walk out the room, go and do something else, give him no response at all. Don’t stay there and take it, with the excuse that he’s autistic. Please, please don’t, Fiona, and I almost have tears in my eyes when I write this. Please don’t take it, please don’t allow anyone to do that to you, even Ian. You don’t deserve it. It will erode you.

I send you a big big hug. I wish I was there to help you too. Please write and let me know how it goes.”

From my friend Deborah, I received –

“I love this e-mail you sent because I can relate to it so much and feel a deep empathy and understanding and knowing.

In my work with autism, I have known many children to go through these extreme behavioural patches. I, too, have spent hours trying to work out why, wondering if it was something I did differently in the therapy session or what it was that set off a sudden outburst or difficult period. Sometimes I find out and sometimes I don’t. It can be something in the environment but I do believe it can also be physiological – ups and downs, hormonal changes, emotional development, etc.

Children with autism have delayed emotional development and sometimes extreme behaviour at a later stage is due to this. Sometimes there is something physiological or sensory going on, sometimes it is something in the environment and sometimes we don’t know what it is!

Mostly these phases just pass and things are easier again.

Courage and strength to you.”

Ruth’s initial reply was short and typically Ruth – 

“My dear Fiona, Bloody hell … I’m SO sorry.”

I sent Ruth a copy of Kirsty’s wonderful email to me, and after she’d read it, Ruth wrote at length about her thoughts and feelings –

“Abuse? Yes. Depression as a result? Yes. Add to this an enormous dollop of guilt because ‘why would a child (however ‘dis-ordered’) hurt me unless it was, in some way, MY FAULT? So while Kirsty has experienced the depression, I experienced more along the guilt lines from interacting with Ian and many others (even though Ian never hurt me, I was consumed with guilt that I couldn’t just magically ‘produce’ speech FROM him – and FOR you). Whether guilt or depression, what is common, however, is the fundamental negativity of our responses.

So look at what you are DOING, Fiona – and see how instinctively you are returning to wonderful, positive interpretations of reality; walking with Ian for example – my goodness, how I remember Ian on our walks; how PERFECT our relationship was; how happy we both were. Instinctively, you know what to do to restore joy and balance in your lives. I guess my question is, why you would not think that working hard with Ian at ‘making you both happy’ is not an incredibly valid educational outcome – at least for now? Why not give yourselves the permission to work on this particular outcome and not to construct a time in your mind where you need to return to ‘table work?’”

Ruth’s reply to me led me to write a long and complicated email to her in which I expressed thoughts that had been plaguing me for months –

“Yes, when things go wrong with Ian I take it very personally, but I’ve learnt over the years (and remember, I’ve been working with him on and off for more than eight years now) that his behaviour cannot always be my fault. I have reviewed my own teaching style so often, I’ve been in danger of becoming as meaningful as a small puddle of water and sometimes I just have to get on with it. You did what you had to do with Ian, you believed in yourself, and you made him talk. I still believe to this day that if it hadn’t been for you he wouldn’t talk at all. So quit the guilt-trip, I’m not buying.

Many years ago (gosh, I remember it so clearly it could have been yesterday), you asked me “Do you want Ian to change or do you want him to be happy?” and these words have stayed with me ever since. You were absolutely right, you know. It’s really hard to keep them happy while you’re trying to help them fit into your world. It just doesn’t work that way, not in the long run anyway. But it certainly doesn’t pay to be negative about it. That way lies madness.

My latest malady – for want of a better way of putting it – is the end result of all this schooling. Here we are in Ireland, where the State is doing its best to ensure that these autistic children get some form of education – they’re even being fussy about the kind of education they’re getting (as if they have some Master Plan) and who they’re getting it from (I’ve been told I’m not an appropriate teacher for Ian because I hold no formal qualifications), and I’m sitting here saying To what end? To what end all this education? Could we be preparing these children for a future that doesn’t actually exist? And isn’t that the unkindest thing we could possibly do?”

I found myself chasing my tail at this time, worrying about how to teach Ian this and how to approach that without Ian launching himself at me. I was tying myself into a knot with concern about all the things I felt he still had to learn, repeating the words, “I have to teach him … I have to teach him …” and then Neil looked at me with his beautiful, calm eyes and asked me one simple question:

“Why?”  

I was halted in my tracks.  

“Because,” I countered, “because…” and then I realised I didn’t know what the ‘because’ was.  

In his gentle voice, my husband continued, “Surely keeping Ian happy is more important right now?”  

And I knew he was right.

So school was abandoned. We went for long walks together and Ian was finding pleasure in his books again. I had temporarily disconnected his computer because he had been refining his computer pictures down to one single image, which he reproduced over and over again, and this image seemed to make him angry. When he asked for the computer I told him firmly, “No computer, Ian. It’s broken.”

And how was Ian through all of this recovery period? Well, it was a little like walking on eggshells for a while. Some days he was angry and noisy, others angry and quiet, and on other days he was good, sometimes even loud but happy, which was a great improvement. Occasionally he smiled too, which was wonderful. Things seemed to be improving. We had some great walks, even though the weather was still cold. However, it was dry and walking our country roads was very pleasant indeed.

Slowly, things settled down.

Ian was still hugely resistant to formal schooling when I dared to try it again but I had other tricks up my sleeve and managed to teach him new things without him even realising he was being taught. We started painting together, too, and I re-introduced him to the idea of modelling with play dough. We walked the neighbourhood flat, which was good for us both, and Ian seemed to enjoy being out and about so much.

He remained exceptionally well behaved when out in public – enough to convince me that his resistance was aimed solely at me – which meant that we could still do the shopping together with no trouble at all. I had always believed that how Ian behaved in public was as important a part of his education as how or what he learned in school, and I was grateful that this part of him had not changed.

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