Autism and Isolation Rooms in Irish Schools: How we must learn to use our ABCs

There is currently a controversy in the Republic of Ireland about the use of “Isolation Rooms” to manage pupils with Autism.

Please note, these are not “chill out zones” or sensory spaces. They are plain undecorated spaces where a pupil with ASD will be placed alone and prevented from leaving for a period. To learn more read this story on the Journal.ie
or listen to the RTE Radio 1 story here
Warning: both links could be extremely upsetting to any parent or person with ASD. I couldn’t listen through to the end.

They are used in mainstream schools where Autistic pupils are ‘included’ and in special schools as punitive measure in response to perceived ‘misbehaviour’

I use inverted commas because inclusion in these cases is recalcitrant at best and not supported by appropriate training or resources. And what is considered “misbehaviour” in these cases is very much a case of interpretation.

Let me explain: those of us who prescribe to the science of behavior analysis believe that all behavior has a function. The function can be sensory: such as eating to satiate hunger or going to the toilet to relieve our bladder/bowels, or having a coffee or cigarette to feel alert or relaxed. The function can also be communication; and for people with a communication delay or disability, such as Autism – what starts out as sensory can often become communication based on what happened next.

For example, a pupil with ASD could be attending a mainstream classroom where they are able to follow the national curriculum with support. However, due to their autism they may experience a sensation of numbness or ‘pins and needles’ if you like when they are required to sit still for too long.

The pupil may have been given a written task to complete but instead of picking up their pencil, they begin flapping their arms or twirling the pencil or perhaps rocking back in their chair. This is an attempt to self-regulate the imbalance they are experiencing internally.

WE ALL DO THIS ! next time you are on a long haul flight or in a cinema which has just shown a 3 hour movie, watch the other passengers or patrons as they stand up to leave. There will be leg shaking, stomping and stretching. For some autistic people, this is how they feel all the time.

However, to the inexperienced observer, the child may appear to be deliberately disruptive or disobedient. Telling them to stop does not assuage the need to balance the sensation, but it could draw attention to the activity which may allow them to delay starting the task, or embarrass them in front of the class.

If they can’t stop, and if they have an internal need to do this it is very hard to stop, then they get told off again and perhaps forced to stop. What happens next can be crucial as this is when the sensory becomes a communicative behavior. If the pupil who is already stressed and in need of sensory regulation feels threatened by being stopped, they can hit out and suddenly go from being “disruptive” to being “aggressive.” If they make contact with another pupil or member of staff, it is quite natural for fear to overcome good judgement, nobody wants to get hurt.
So the offending pupil is then removed from the classroom.

Whatever the motivation for removing them, the result as you would have heard in the radio item is a feeling of punishment. Punishment for something they just couldn’t help.

If the behavior continues, the school might decide to apply for a capital grant to convert an old storage area or bathroom into an isolation room where offending pupils can be sent and held against their will for hours at a time. This is currently happening in schools across Ireland.

Imagine instead that the school decides to bring in a Behaviour Analyst. For a fraction of the cost of building an isolation room, they bring in someone with a masters degree in behavioural science to do what is known as a Functional Analysis.

This is an observation over a long period where all the stake holders in the situation are asked to fill in data on what is happening, where it is happening, what happened before and what happened after.
It is really really important to get a qualified outsider in to help with this as their observations will be impartial. You can’t do this yourself when you are part of the situation. Inappropriate behaviours can be described as an Iceberg with the reason in the 85% below the surface.
The people on the Titanic were not capable of analysing the iceberg when they were up to their necks in icy cold water.

The kind of information the BT will look for is really easy to collect through observation without stopwatches or graphs.

For example, a simple method of data collection is called an ABC. You take an A4 page, and rule it into 3 columns, like so:

A stands for Antecedent or what happened before. (exactly what happened before)
B stands for Behaviour. Describe in detail the topography of the person’s actions.
C stands for Consequence. Exactly what happened straight after.

In my experience (and I have used this method many many times) by the time you have completed one side of an A4 page ACCURATELY, you have a pretty good idea of what is going on with the behaviour.
ACCURATELY meaning that the antecedent column does not say “no reason” and all parties are honest about the action they took following the observed behaviour.

I have had to write “yelled and smacked” in the C column before. I wasn’t proud of it but it helped me understand that smacking and yelling had absolutely no effect on the behaviour. 

Once you have an idea of the function of a particular behaviour, then you have a chance to replace it with something that is a lot more appropriate to a classroom setting. The Behaviour therapist can make reccommendations which may involve the imput of an occupational therapist or speech and language therapist. They will also take into account the setting and what suits the classroom. It is all about the environment.

As someone who works in communication so I would often advise an alternative means to express a need for a movement break, or asking for help with a task. Even when a pupil is considered highly verbal they can feel very uncomfortable communicating in a large classroom.

Imagine if I were to ask you in front of a large group of your peers:

 “When did you last have a prostate exam/pap smear and what was it like? Did you enjoy it?” 

Well that’s how it can feel to have autism and in need of help. Sometimes accidentally pushing someone and being let out of the class can seem easier, which is why they might do it again.

It is really easy to accommodate this with visual strategies. These can be written contracts with a schedule of token reinforcement, visual schedules and/or something as simple as a set of break cards. These solutions cost no more than the paper and ink used to create them.

Compare that to building a room where a pupil will be imprisoned for long periods of time.

By teaching our teachers the skills to manage and improve behaviours with the use of positive reinforcement rather than punishments, all pupils would benefit. The entire teaching environment becomes calmer as everyone is motivated to achieve the rewards, rather than avoid punishment.

The observation, measurement and development of these strategies have to be individual. Autism is a spectrum disorder with thousands of variations so what works for one pupil may have the opposite affect on another.

I was asked to advise staff in a school in Australia where a pupil was using his toilet breaks to splash water around the school bathroom resulting in a dangerous slip zone. The staff had been restricting access to the toilet (with distressing results) but I suggested they try the opposite; Set up a specific water play area in a safe spot and allow the pupil to work for access. Instead of disrupting he became super compliant in order to earn more chances to play in the water zone. Another pupil might HATE water play. You have to observe and adapt accordingly.

Another autistic child in the school was refusing to follow creative writing tasks as set by the teacher and instead engaged in obsessive scripting about a computer game that he played at home.
I suggested the teacher learn about the game and look up examples of fanzines and online fan fiction. The pupil was then set writing tasks based on this which incorporated the spelling and grammar goals in the curriculum, but engaged their interest.
Once a month he would be allowed into the Principals office (under supervision) to upload his own story on to the site and then share it at assembly.

In another class, parents of typical pupils had reported that their children were finding the setting distressful as the teacher was “always yelling at X” – a child with autism. The situation was becoming intolerable for all concerned with pressure to remove the child and return them to a special school where they would not access the national curriculum.

I showed the mainstream teacher and classroom aides how to structure tasks into short achievable chunks with a tangible immediate reward. The reward was offered as a visual card on a token board, customised to suit the child’s interest in a TV character.  Rewards were immediate AND incremental in order to maintain interest and motivation. The entire class were also given a visual contract to earn rewards on completion with every Friday as ‘reward day.’

It was reported that not only was the entire class calmer and happier as the teacher had stopped yelling, but it was also more efficient as everyone worked to tidy up materials or complete tasks in order to earn reward tokens and get their lolly pop on Friday.
You can imagine all those kids walking out into the main school yard on a Friday afternoon brandishing their lollypops proudly to pupils from other classes. Rewards motivate everyone.

In other words, by introducing the use of simple evidence based positive behaviour support techniques for one pupil, the benefits had extended to the entire class. And nobody was complaining to the Principal anymore.

So rather than spending €12,000 on capital building to create an isolation space, a fraction of that investment in people had resulted in Universal Improvements in Learning for everyone.
But the cost benefit is more than monetary.  A parent’s peace of mind and a pupil’s right to an education had been saved. And since it was the teacher’s who had called me in, it made their job a lot more satisfying and enjoyable.

So next time you think someone with Autism is engaging in “inexplicable behaviour” ask yourself

“Have I done my ABCs?”

xx

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Can Judaism play a role in Isaac’s life?

As a fairly steadfast secular Jew, religion in its singular, most fundamental form was never going to be an (al)mighty force in Isaac’s upbringing. Secular Judaism serves up head-scratchers of, well, biblical proportions though. Anyone well versed in it knows that psalms, texts and liturgy form but a slither in Judaism’s complex cultural kaleidoscope.

Even though I’ve always dwelled in the ‘barely-believer’ camp, like so many others an arcane Jewishness has run through my family’s veins. From child to adult, I gorged on the rich pickings of a decisively pick and mix approach. Where a wholesome embrace of certain traditions over others appears arbitrary yet is utterly expected and rather effortless.

If this fluid yet full-of-foibles approach to religion is round holed, then autism is, of course, resolutely square-pegged – meaning Isaac’s Judaism has never really taken shape. Random festivals, sing-songs, all-join-in stories and surprises, full on Friday night dinners, the synagogue as social hub and more, ours is a brand of Judaism that’s more party than preachy. What it isn’t is logical, descriptive, sensible, straightforward.

As such, the cornerstone of the (secular, religious, whatever) Jewish calendar, Passover, passes us by. As the extended family sit down to celebrate, we’re seated elsewhere. It’s a giddy and glorious affair. Children the heart and soul. Colourful stories of Jewish emancipation are read by everybody, symbolic foods – bitter, sweet and worst – are eaten, dares are made. Wine is tasted, the youngest child sings, presents are hidden. 

We tried a fair few years ago, ever so slightly. But raised the white flag early on when the hurricane of noise and food and frolics blew Isaac into major over stimulation. The spartan surroundings of a spare room the only solace. Since when we’ve retreated into risk averse avoiders.


I’m denying him something precious I know. But Passover is so bound up with trip wires. Familiar family houses lose their familiarity; people jovially jostling for space and sound. Dinner tables become sinisterly ceremonial with plates and dishes, colour and spice, and much mystique. Groaning – literally for Isaac – with foreign foods that fizz and froth at him. Cutlery, crockery, glass, china – clinking, smells overriding, people shouting, picture books of cartoonish death and destruction howling at him. Not just a sensory sickness. The scalding blur of all this clutter, audibly and visibly also blighting any order, any uniformity he yearns. Comprehension can collapse like a house of cards.

Unreconstructed, this type of boisterous Jewish cultural onslaught is not on for Isaac. The collateral damage too much. For now. Denying can actually be a decent thing to do also. Even the most basic tenets of Judaism have seemed to favour isolation over congregation for us as a family. Synagogues are bustling, busy places with singing and chanting that can become exuberant and painfully loud to many ears, sensitive or not. The protocols are potty. There’s a haphazard nature of services that can mean a swift swing from loud informality to hushed seriousness.

Our one religious-ish experience five or so years ago, around diagnosis time, had been torrid. It was at an informal service in a synagogue for parents and their little ones. Jollily conducted by an expressive teacher, wide-eyed, miming motions that enriched and complemented tales of adventure and imagination. Restless, Isaac was disengaged. The tut tut brigade were on tenterhooks. Unaware as I was of his visual struggles to decode gesticulations (how my daughter instinctively, understandingly, unlike Isaac, apes hand movements and body moves with glee is so instructive). I attempted and failed to inspire him. Leaving in collective anguish meant no return.

Maybe the sorrow of this occasion has amplified in my mind. It happened during the epoch in our familial narrative of unknowledgeable nursery stuff, nasty stares and nerves fraying. There’s an element of self-infliction with all this avoidance, knowing how many, many Jewish communities boast an inclusivity – full of intention and with a degree of success. Welcoming is ubiquitous I know that. But instinct, sociability and illogical rituals are the dominant currencies in so many synagogue environments, making the battle for someone with autism appear demanding. My stance on Judaism therefore remains devoutly in stasis.

Nevertheless, I have a daughter to add to the complicated equation now. Who will nimbly fit into our faith’s idiosyncratic offerings that are full of warmth, love and family dynamics. Issues around identity that I could put off start to surface too – I have a responsibility to at least inform and open opportunities for both my children. And quite frankly, I am laden with a sadness about the absence of Judaism in my house; the silence haunting me a little like a lingering and lost Hebrew melody. So I am beyond grateful to two recent events that forced me out of this spiritual vacuum. And have proposed potential aplenty.

The first being the invitation to Ellie’s Bat Mitzvah (coming of age ceremony for girls). Ellie being a 12 year old first cousin Isaac adores with all his heart. And she loves him back just as much with a quite startling tenderness and understanding. Seizing on the solemnity of the day with brilliant simplicity, Isaac would announce with gusto for days and weeks before that “on Saturday November the 28th, Ellie will become a grown up”. Religion and sermons, ceremony and celebration, heritage, family, culture, discussion, children, a spirited and spiritual unique flavour – Bat Mitzvahs encapsulate that brand of Judaism I’ve talked about with its dynamism, dialogue and general richness. However, just this once, any amount of dwelling on the fissures that a visit could very possibly force failed to begin to chip away at Isaac’s absolute need to be there.

We arrived to witness men and women sitting  separately in the synagogue. An irrational concept to most people, let alone purveyors of logic like Isaac. He grasped this potential hurdle neatly however, leaping between my wife and me; utilising it as an opportunity to orientate himself in a new setting as opposed to processing any peculiarity. The mechanism of manically moving about a new location is one he often sets in motion on first visits. It is a method of focussing and stabilising – sometimes with success, sometimes not. My wife, admirably, courageously, unexpectedly, remained composed in the face of his energy. The physicality and enthusiasm was in the main treated with a compassion by most of the congregants.

Indeed, Isaac’s reactions and conversation, sparkling with honesty, spoke mischievously to some of them. “This singing is silly. It doesn’t work”.

His usual candidness induced humour: “Daddy, why are you kissing everybody, stop kissing the women.” “You don’t kiss grown-ups, you only kiss adult cousins and you mustn’t hug teachers,” checking himself before deciding who best to hug.

Regularly he enquired, “where’s Ellie, I need to see her, she’s becoming an adult.” A bit predictably and not a little pathetically, I was displaying a very detectable (by Isaac as well) anxiety. His mini mood shifts and irritations were manageable but always felt on the urge. A few rotten reprimanding voices in the congregation agitated me.

But there were a few moments to really cherish – which were when there was most jeopardy: when Ellie took to the stage to talk to everybody and share her learnings, and the subsequent address by the Rabbi. After some excited cries of “it’s Ellie”, he settled into a calm reverie as she spoke. Bewitched almost by her oratory.

And then the Rabbi spoke, and Isaac, with (as usual) not a trace of timidity, felt the urge to copy him a little as he spoke to the congregation. Isaac announced the Rabbi’s presence with aplomb and sincerity. The kind rabbi asked if he had “a sidekick somewhere”, an “echo perhaps”. To a now warmed up audience there was much merriment as Isaac repeated “echo” a few times and then hushed. Borrowing his school learning, he must have internally compared being at synagogue to being in an assembly, which, the two events now aligned in his head, made himself be quiet and disciplined. A real feat. We were proud and humbled.

Ellie concluded proceedings by announcing that to celebrate her Bat Mitzvah, she was making a donation to the charity, Ambitious about Autism, in honour of her cousin Isaac. “It was an easy decision,” she said, “as he’d taught me so much.” The hullabaloo at the end was a little hellish, what with people rushing around, snacks and wine, the crowd. Leaving via a playground and a neat finish as internally articulated by him, didn’t occur. The distress was transient, as we managed to manoeuvre out of the hectic synagogue, kind of in one piece give or take a lost skullcap or two. All in all it was quite a moment in ours and Isaac’s lives.

Which was built upon considerably a month or so later when my wife and I had the privilege of attending the Bar Mitzvah (coming of age ceremony for boys) of the wonderful Reuben – very similar yet very different to Isaac – who attends the same school. Electing not to take Isaac made sense to him; Reuben is a friend he sees at school, why would he see him not at school? He is a ‘School. Friend.’

A judgement-free, relaxed and open community, in a space dripping with inclusive spirituality, Reuben was honoured and seemed comfortable and comforted in his family’s unique synagogue. Reuben’s year’s preparation of chanting a significant Hebrew portion of the bible came to fruition fabulously. A beautiful voice resounding round the synagogue, a community delighted, heritage honoured, joy everywhere.

The Rabbi’s sermon sent me into emotional raptures. Veering between absorption and a little distraction, Reuben looked on whilst being celebrated completely: “We love you,” said the Rabbi. “You’re kind. Your personality so special. The room lights up when you enter.” “You’ve taught me what the scariest film in the world is!” At which point, unabashed Reuben climbed the pulpit and exchanged hugs with the Rabbi. Afterwards, a lambent Reuben told me, “I did my Bar Mitzvah. Everyone is very proud of me; I made no mistakes.”

This perhaps more than anything has created a path in my mind I can follow to drip a bit of Judaism in my family’s life. This could be Isaac. Yes, we have to show the devotion and immersion of Reuben’s family. Yes that me be unobtainable, unsuitable and a million miles off. Do I have the strength?

But with all the complications and randomness and individuality that comes with both, autism and Judaism can be joined. They can be bedfellows. And that is rather astonishing.

(I always try to reply)

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