Autism : a peaceful moment …

Ian today, watching James and the Giant Peach for the umpteenth time. Sound on. Mute. Sound on again. Mute again …

He looked so contented, I couldn’t help myself. I grabbed my phone and snapped a couple of pics.

Then Ian looked directly at me, and held the pose – a perfect expression.

What a champ.

❤️

Autism : vaccination, part one

The day did not start off well.

Firstly, I drove to the allocated business park only to discover that the Eircode (post/zip code) I’d been given was for the whole industrial estate, not a specific building. I knew I was looking for Unit 217, but none of the gazillion units had any numbers on them.

Asking for directions didn’t help at all.

I was becoming a bit desperate. We had been given a very specific time, and now I was going to be late.

I spotted someone I thought I recognised, and leapt out the car to ask him where I was supposed to be. Et voilà! I had found it. I saw faces I knew, and was guided into an appropriate parking space.

Secondly, when asked to hand over the relevant forms, I couldn’t find them in my handbag (even though I knew I’d put them in my bag last night), so I had to apologise and fill them out again.

So far, so embarrassing.

We waited in the car until we were called, and we went into the building.

Mistake the third: I’d left our *&#€”@* masks in the car.

Not a problem, said the very helpful nurse, and masks appeared for us to wear.

Ian sat in the big brown chair with his arm bared while I squatted in front of him, resting my hands gently on his arms. The nurse was very quick, and almost before we knew what was happening, the needle was in Ian’s left arm.

He shot to the right – almost out the seat – and the nurse was left holding the syringe and wondering where her patient was.

We tried again. Nope. The minute the needle went in, Ian dodged.

Okay. Time for some reassurance.

I spoke gently to Ian, and then the nurse said “I only have to count to three, and then it will be done. One, two, three.”

“Try three, two, one,” I suggested.

Ian was listening. ‘Three, two, one’ is no time at all. At the dentist, the count starts from twenty …!

Although he twitched while the nurse injected him, Ian sat like a champion. She quickly counted backwards from three, and the job was done.

Thank you all so much for your thoughts, prayers, and good wishes. Ian did really, really well, and I’m sure you would have been as proud of him as I was.

❤️

Autism : a question of ‘Easter ‘

“Easter, please, Mummy.”

“Easter is on Sunday, Ian. Wait til Sunday.”

“Easter,” he insisted. “Easter, please, Mummy.”

Ian loves a party. He always has. Especially if there’s cake and candles and presents – he’s like Eeyore from the Winnie-the-Pooh stories, with smaller ears ….. 😉

So in an effort to fulfil Ian’s Easter needs, I bought a cake, decorated with chicks and bunnies and flowers, and got him a new book, which I wrapped, just to make a proper occasion of it.

“Easter, please, Mummy.”

The day finally arrived. Easter Sunday. And Ian had his special cake, looked at his new book, and had a celebratory lunch at his grandmother’s house.

And he was still asking for ‘Easter’.

After lunch, something – perhaps desperation – seeped through Ian’s brain, and he amended his request :

“Backpack, please, Mummy.”

Suddenly, I knew what he was after.

Hidden in his backpack, a gift from his carers at the day center —

An Easter egg.

There was chocolate in his backpack.

I looked at Ian, and smiled. “You mean chocolate, don’t you?”

“Chocolate,” answered Ian with a grin. “Yes, please, Mummy.”

Finally, the ‘Easter’ issue was dealt with. Ian had a chunk of chocolate Easter egg in his hands, and was happy.

And if you’re wondering ‘Why didn’t you give your children their own Easter eggs?’, I knew their grandmother had already bought them enough chocolate to sink a battle ship. There’s only a limited amount of room for chocolate in this house, and the boys don’t eat much of it anyway.

Interestingly, even though Ian got a ginormous Easter egg from his Gran, he was only really interested in the one in his backpack.

The other will keep.

Til next Easter, maybe …..

😊

Autism : the thorny issue of Consent

As I’ve mentioned before, Ian isn’t the ‘may have trouble making friends’ kind of autistic, or the ‘sure, he’s a bit antisocial but god love him, he’ll be okay’ kind of autistic.

Ian is the ‘will never be able to cross the street alone‘ kind of autistic. The ‘hasn’t got a clue what day of the week this is, let alone what year’ kind.

Very autistic.

Profoundly so.

Not stupid, though. There’s a part of Ian’s brain that fires on so many cylinders it would take your breath away, and is capable of loads of very, VERY clever things.

But other areas, specifically the ones we need to function in society … those, not so much.

And now there’s COVID-19, and vaccinations, and the need for consent. Consent from Ian, because in terms of the Law (The Assisted Decision-Making (Capacity) Act, 2015) we can’t make the decision for him.

https://inclusionireland.ie/assisted-decision-making/

Ian has to give consent for himself. And I understand why that is. I know that there have been horrendous abuses in the past by people taking away other people’s consent, acting on their behalf, or being their voice – when they may still have had one of their own. I get it. Truly, I do.

But asking Ian to consent to a medical procedure is impossible. Because he doesn’t grasp the concept of what he would be consenting to, and he never will.

Am I doing him a disservice by saying that? I don’t think I am. Ian is many wonderful things, but aware of the world around him he is not.

He does not have ‘capacity’ –

“Capacity refers to an assessment of the individual’s psychological abilities to form rational decisions, specifically the individual’s ability to understand, appreciate, and manipulate information and form rational decisions.”

(https://www.crisisprevention.com/Blog/Using-Functional-Assessments-to-Determine-Mental-C )

Section 3 of the Assisted Decision-Making (Capacity) Act 2015 says —

3. (1) Subject to subsections (2) to (6), for the purposes of this Act, a person’s capacity shall be assessed on the basis of his or her ability to understand, at the time that a decision is to be made, the nature and consequences of the decision to be made by him or her in the context of the available choices at that time.

(2) A person lacks the capacity to make a decision if he or she is unable-

(a) to understand the information relevant to the decision,

(b) to retain that information long enough to make a voluntary choice,

(c) to use or weigh that information as part of the process of making the decision, or

(http://www.irishstatutebook.ie/eli/2015/act/64/section/3/enacted/en/index.html)

I have spoken to Ian about the situation. Of course I have.

“People are getting sick, and doctors are trying to stop it …” (Ian understands ‘sick’, ‘doctor’, and ‘stop it’) “… and so you have to have a vaccination.”

I say the word twice, and Ian repeats it.

“A doctor will – ” and here my brain leaps ahead with ‘stab you with a needle and it will hurt’, so I take a breath and measure my words again. “A doctor will give you an injection here (I touch Ian’s arm) and then it will all be done.”

I smile at him. I know Ian doesn’t understand the why’s or wherefore’s, but I hope that something will percolate through his brain. Perhaps mummy’s reassuring smile …

So. Paging, paging, paging through all these reams of forms that have been presented to us, with all those pictures that explain nothing to Ian, until finally, we find a section, almost hidden at the back – Aha! Section C.

Finally, somewhere for us to sign on his behalf. Because, in the Act, the important words are “everyone is presumed to be able … unless the opposite is shown”. And in Ian’s case, it most definitely is.

Tuesday, 11.45. That’s when it’s supposed to happen.

Of course, the first vaccination will likely be no problem at all, but I wonder if we’ll get him to sit for a second shot when he knows what to expect.

Think of us …..

Autism : psychological evaluation

I recently found copies of old psychological evaluations of Ian.

I didn’t really want to read them because I knew what I would find – the endless succession of ‘didn’t engage’, ‘scored in the low percentile’, ‘disorganised’, ‘an area of weakness’, or, the classic, ‘his overall development in the area is below that expected of a child his age’ — wait, what, for neuro-typical kids, or compared to others with autism spectrum disorders??? I never did get an answer to that one. But it wasn’t happy reading, and it depressed me as I had known it would.

And then I came across this paragraph –

and it all came flooding back.

Watching my son being tested by a stranger was always a trial for me. An hour or more of exquisite anxiety as I watched Ian deliberately underperform.

As his mother, but also as his teacher, I was always appalled by what Ian thought he could get away with. And make no mistake, he knew what he was doing. It was his ‘thing’ : place him in an environment where he got even the slightest sense he was being tested, and he would shut down.

It was more than just a stranger asking him to do things. It was more than him not knowing what might have been required. There was nothing – absolutely nothing – placed in front of him that we hadn’t covered in the classroom. And he sat there, and played dumb.

During this particular session I was very good, sitting in the corner of the room, pretending to mind my own business, watching, cringing …. I think I physically held my mouth closed when Ian wouldn’t point out a triangle. I didn’t utter a squeak when he wouldn’t name the farmyard animals in a picture. But on and on he went, until I just couldn’t take it any more.

“Ian!” I burst out. “Enough! Answer the question.”

And he did.

The psychologist looked up from the table. Perhaps she could feel my pain from across the room. Perhaps I even had smoke coming out of my ears!

She smiled at me in understanding.

“Would you like to take over?”

Well, I didn’t need to be asked twice. I was in Ian’s face so fast he blinked in surprise.

I turned a couple of pages, and we went back over some of the tasks.

With very little prodding from me, Ian engaged – at least well enough (given that he still knew it was a test) to show the psychologist that he knew the answers and could speak for himself.

Way to go, mum! How to skew a psychology evaluation in one easy step …

But that’s why any evaluation of Ian – and potentially any autistic child on the planet – is so damning. It’s like the observer effect – “In physics, observer effect is the disturbance of an observed system by the act of observation”.* In psychology, it’s called the Hawthorn Effect – “The Hawthorne Effect, also called the Observer Effect, is where people in studies change their behavior because they are watched”, although that theory has now been debunked.** (I wonder, though, if it wasn’t debunked more because of the parameters of the test than the lack of validity. We all know that we behave differently when we think someone is watching. I suspect it takes a particularly strong character to not change their behaviour in any way, in any circumstances.)

The fact remains that the minute you try to assess Ian, he changes what you’re trying to assess. Partly because he’s clever. Perhaps also partly because he gets self-conscious — and that term alone opens up a whole can of worms! Self-consciousness and autism do not go hand in hand.*** But again, I call into question – like imagination in autistic people – the notion that just because you can’t measure something doesn’t mean it doesn’t exist.

And so I skewed the results because I wasn’t prepared to allow Ian to get away with it. I guess I couldn’t sit there and watch him let himself down. He knows so much, and is able to give so much of himself, how could I NOT want to share that? How could I let him score so badly on the psych eval when I knew without a shadow of a doubt that he was capable of so much more? Our lessons together had been challenging, but they were also full of fun and laughter, and I wanted to share that. I wanted that to be seen. Yes, my son remains profoundly autistic, but look what he knows. He’s clever and coy, and cheeky, and self-confident. He has a highly developed sense of humour. Look what he can do! Look who he is!

In truth, Ian has no ‘theory of mind’.**** Effectively, he shouldn’t be able to grasp what a stranger expects of him. He shouldn’t BE self conscious. But put him in a standard testing environment – quiet room, table, chairs, psychologist, prescribed forms – and he’ll become about as autistic as you’ll ever see him.

I don’t suppose I’ll be allowed in any more. IF he’s ever evaluated again. He’s an adult now. Do they bother? I wonder …

This morning, as Ian got himself dressed and ready to go to breakfast, I said idly to him “You’re a clever chap, aren’t you?”

Ian’s response?

“Exactly …”

* https://en.wikipedia.org/wiki/Observer_effect_(physics)

** https://www.statisticshowto.com/experimental-design/hawthorne-effect/

*** https://ajp.psychiatryonline.org/doi/full/10.1176/appi.ajp.159.8.1422

**** https://en.wikipedia.org/wiki/Theory_of_mind )

(“The Leiter-R is an individually administered test designed to assess cognitive functions in children and adolescents ages 2-20. The battery measures nonverbal intelligence in fluid reasoning and visualization, as well as appraisals of visuospatial memory and attention. The test is divided into a visualization and reasoning battery and an attention and memory battery.”) https://libguides.lib.umanitoba.ca/c.php?g=297419&p=2316280

Autism : Intervention from Hell

Today , I nipped into Twitter. Haven’t been there in a while, so I thought I’d see what’s going on in the world around me.

And I got my heart broken into a thousand pieces.

I came across this –

And then I read all the comments that followed it, because I couldn’t believe my eyes.

Was this a real thing?

Could this actually have happened?

Where in the world could something this awful be happening?

And how could it possibly be legal?

❓❓❓❓

Everything I read confirmed my worst fears. Yes, it is real. Yes, it did happen – to many, many people. Yes, it happens in America. And yes, it IS legal.

The slang for it is ‘gooning’ –

There are some things going on in the world which leave me stunned.

Excuse me, I have to go and hold my precious autistic son close to my broken heart, breathe in his beautiful gentle energy, and pray that those poor traumatised people – wherever they may be – will find peace and healing.

With love

❤️

Autism : A Man’s Man

Yesterday, I heard someone refer to Ian as ‘a real man’s man’.

I freely admit, my first thoughts were “What? My profoundly autistic son? How is that even possible?”

So, as always when I’m presented with a minor mental challenge, I gnawed on it, examined it from many angles, spent a sleepless night considering it, and did a little bit of research on it.

What exactly is a ‘man’s man’?

Perhaps I should start with my own thoughts on the matter …

To me, a man’s man is someone who is confident within himself, of himself and of his place in society. A man who is polite but strong-minded. A man who can express his thoughts clearly, and is not afraid of his emotions. A man equally comfortable in the company of men and women. Like that, sort of.

Does any of this apply to Ian?

Ummmm, no.

Okay, I have to look further afield …

I’m not sure that helps us much.

No, that definitely doesn’t fit.

I’m beginning to understand what was meant.

Up til now, Ian has had almost exclusively female tutors and support staff. I had never given it a second thought.

But

Ian likes being outdoors.

Ian likes engaging in outdoor pursuits, in the company of his two (male) support staff.

Ian is responding well to their calm masculine guidance.

Ian is communicating better, more clearly and more frequently in an all-male environment.

Thus : Ian is a ‘man’s man’.

Okay.

I think I get it now. 😊

And here’s another thing. Because of COVID-19 Ian has been in a much smaller group. Only him and one other ‘service user’, and their two carers.

A smaller group means less over-stimulation – remember, each service user has their own dedicated adult in attendance, so whatever number of people were there to be cared for, double it.

It also means less imitation of iffy behaviours.

That’s the thing, isn’t it? The books might tell you ‘autistic children don’t imitate’ –

“Often children with autism spectrum disorder (ASD) show deficit in imitation. They often show little interest in the behaviors of others around them and rarely try to imitate them.” (https://luxai.com/how-to-teach-imitation-to-children-with-autism/)

But they do.

100%.

Reducing the size of the group and thereby limiting over-stimulation, and giving Ian male support staff for the first time in his 25 years, has shown a marked improvement in his interactions, his communication, and his willingness to cooperate.

And I, for one, couldn’t be happier.

👍🏻😊👍🏻

Autism : What’s in a name?

All his life, Ian has called us “Mummy” and “Daddy”.

He never wavered. He never seemed to wonder why other people called us something else. Even when I tried to tell him, he wouldn’t be swayed.

We were mummy and daddy, and that was that.

So imagine my surprise at bath time last night, when Ian quietly, almost experimentally, asked me “What’s your name?”

I smiled at him. “Mummy,” I said.

Still softly, but quite determinedly, Ian corrected me. “Fiona.”

I blinked in surprise. “Yes, of course. My name is Fiona.”

“Neil,” said Ian, obviously following his train of thought.

“Yes, that’s right. Daddy’s name is Neil.”

Had he been taught this at his day placement? I checked today. No, he hadn’t, although they have observed that Ian is using language more freely and communicating more directly with the staff there, almost day by day.

This is very exciting. The right people in the right environment, connecting with Ian through the right activities = spontaneous greater language usage.

And after all these years, Ian has finally made the connection.

That I call ‘daddy’ Neil, and he calls me Fiona.

Twenty-five years old, and my son finally knows my name. I wish I could adequately express how big this feels. ‘Cosmic’ doesn’t quite do it justice.

Not because he knows it, but that he made the connection by himself.

He worked it out alone, and then fact-checked by asking me my name, and corrected me when I gave him the wrong answer.

That’s huge, and it’s going to take me a while to stop smiling.

I’ll be back in the New Year.

Season’s Greetings, everyone. Stay safe, stay well, stay happy.

Much love ❤️

Autism : The Power of Waiting

It has been my experience in life that people aren’t always great at waiting for other people to speak.

In fact, they may even talk over someone, without even pausing to listen to what another may say. And that’s fine if you’re neuro-typical and with a friend, and can say with good humour “Hey! I’m talking!”

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

On more than one occasion, I have heard my child greeted like this –

“GoodmorningIanHow’reyoudoing?Yougood?Excellent!Let’sgo.”

One long string of words. A continuous blur of sound – that’s how the autistic child hears it. Nonsense, which requires neither acknowledgment nor response.

By people who work with autistic people!

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.

😡😡😡

We know that children with autism have processing issues. And if we know this, surely we should modify our behaviour to take it into account? It seems fundamental, doesn’t it? But you’d be amazed how rarely it is done.

Let’s break it down :

The autistic mind needs time to –

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

Let’s say we generously give him a clear second for each of those things, what does that look like?

I say “Good morning, Ian” and silently count off the seconds on my fingers.

Ian takes a breath and answers “Good morning, Mummy.”

Of course, thanks to our many hours together in the therapy room, Ian is used to being asked questions, and knows there is an expectation of a response from us, so there is no pause. We don’t need to count off the seconds, mentally or otherwise, because – if he knows the answer – he answers straight away.

Five seconds out of your day.

BUT that’s five seconds for each time, not just for a response to ‘Good morning’. Every time you look for an answer. ‘Would you like some juice?’ ‘Have you finished?’ ‘Look at the picture – What is the boy doing?’

Whatever the question, the waiting is the same.

Over the span of a day, it may add up to a few extra minutes. But that’s a few minutes of useful work. A few minutes of time well spent.

A few minutes in which you have shown respect for an autistic person’s need to process.

Shown an understanding for the very nature of autism.

I say five seconds by way of example. It might be less than that. It might be a lot more. Twenty seconds. Thirty. I don’t count. ‘Five seconds’ is just to give you a handle on it, a way in. The time will be different for every person.

Of course, the way you wait is hugely important.

It’s about finding that place 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?

Where there is no ego. No impatience.

There is only waiting.

If you can find that place, that is where the magic happens. That is where you connect with the working mind. *

There’s 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

~ you can repeat yourself, and model the 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 they notice everything. And if they notice that you waited and gave them time, they may wonder what you wanted. Better yet, the next time you wait, they may fill the void with something of their own.

And how exciting would that be?

* See previous blog Autism : The Jam Donut Theory