This is a post that, in its formation, has become more pertinent to me by the word. Even as I’ve pondered the prospect of writing this piece, each thought propagated another thought & another thought ~ almost to the point of putting me off properly starting.
Suffice to say it’s clear transitions & change, the challenges they present & how to help is not the quick & easy subject I thought it would be to communicate. For me, anyway.
That said, having accepted an open invitation via twitter to collaborate with a small band of others to author on autism related subjects, I am gratefully committed & have persevered ~ although I do wish I’d started when the challenge was accepted & not on the suggested day of submission (also now past)! That could be an executive functioning fail right there ... & maybe a touch of demand avoidance ... but I did say I often need a deadline to get things done & that this new arrangement might be the one thing to get me back in the writing saddle & here I am, getting it done.
Anyway, having planned to start at A, I’ve already veered off track to goodness knows where & must get back on course for B (or C?) & the topic of change.
It’s certainly a topic that’s very relevant to this #autismrich family’s day to day life, as it is to other autistic families. And it’s an important topic to talk about because transitions & change can be very unsettling for us & we can react adversely to them.
We can become more avoidant, more resistant, quieter, less verbal, less coherent, louder, more verbal, more tearful, more angry, more easily confused, more indecisive, less easily consoled or we can simply become stuck (in mind &/or body) ... all are potential responses to feeling more unsure, more anxious, more scared, less safe as a result of change.
Yet not all change is bad & some change I crave.
I secretly aspire to be a force for change (but doubt I'll ever be so). I advocate for change & support actual forces for change in education, in society, in equality, in the world & the way in which we care for our planet & each other. In fact one fellow autistic, Greta Thunberg, is proving herself to be exactly that, even selected by HRH The Duchess of Sussex as one of 15 #ForcesForChange to be featured on the cover of British Vogue September 2019.
So us autistics can do change, sometimes even huge change ... but other times we can't, not even small change.
To understand why, & in an ongoing effort to highlight the need to look beyond adverse surface behaviours to appropriately support or address their root causes, I want to delve deeper.
Interestingly, & significantly, it was the eruption of months of pent up responses to one particular set of changes that launched this family onto a trajectory to planet autism (where we landed with one almighty thud on our backsides ... no single small steps for us & certainly no command module waiting to transport us back to familiar territory ~ also topical at the time of writing!).
This was the transition from primary to secondary school for one very unsuspecting angel fish (pre diagnosis when we still thought we were in Italy rather than Holland) which triggered a chain reaction of events & self-styled problem solving coping strategies that, by the Easter of that first academic year, could no longer be self-managed, sustained or contained. In a bid for survival, the panic button was pushed & meltdown ensued.
And as many of us weather a different transition now, from school days to summer holidays, with the increased likelihood of adverse behaviours this brings, it’s poignant & timely to reflect on both these scenarios ~ & other transitions & changes we’ve faced, failed & succeeded at ~ & in so doing, I hope, share some useful experiences, observations & learnings.
In this very long post, & to provide some structure, & a navigation aid for anyone wishing to dip in & out, I will attempt to shine light on:
1. What we mean by transitions & change
2. How & why we're impacted by transitions & change
3. What helps
4. The bottom line
5. A final word
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| Photo by Marcos Pezzani on Flickr |
1. WHAT WE MEAN BY TRANSITIONS & CHANGE
As already eluded to, at this time of year, for autistic children in particular & autistic parents, there are many potential transitions & changes to navigate, such as:
- The end of an academic year & the prospect of a new one involving change of class, teacher, TA, coat peg, classroom, desk, “table mates” & questions about understanding, acceptance & accommodations;
- The end of being at one school & the prospect of starting a new one involving changes in daily routine, route to school, timings, school size, rules, classmates, different & more teachers, uniform, homework & concerns about understanding, acceptance & accommodations ... the list goes on;
- The end of getting up & ready for school at a set time each day & other routines & the beginning of a seemingly never ending, comparably unstructured summer holiday.
Anyone living through such changes, autistic or not, will know these are fairly obvious & not insignificant for anyone, but they're particularly triggering for autistics & exist over & above very many other & frequently occurring but less obvious transitions & changes, all lying in wait to trip up autistic soles ~ I mean souls ;). And if not managed successfully the compounded effect can be catastrophic:
- Waking up to getting up & getting ready for “the day”
- Switching off, going to bed & getting to sleep
- Getting out of the house to travelling to arriving at a destination
- Moving from one room or space to another, eg a classroom to an assembly hall, playground to classroom, out of the car, from the corridor into the dinosaur section at The Natural History Museum, from an atrium to a lift, from outside to inside the O2 or other public venue ... again, the list goes on
- Moving from one task to another, especially if needing to transition from a “state of flow” or hyper focus (ref Dr Damian Milton*)
- Into & out of the school day (trouble settling in & potentially “exploding” out)
- Into & out of the weekend (strict structure to relative lack of structure)
- Into & out of end of year assessments, eg comprehending the need to continue attending school & learning post assessments (whether assessments accessed or not)
- Childhood to adulthood, eg Child & Adolescent Mental Health Services (CAMHS) to adult services & all the other connotations of this particularly huge suit of transitions
And on the subject of adulthood,
transitions & change don’t stop with the end of childhood.
The following are all relevant:
- Waking up to getting up & getting ready for “the day”
- Switching off, going to bed & getting to sleep
- Getting out of the house to travelling to arriving at a destination
- Moving from one room or space to another, eg identifying the appropriate moment to leave a meeting or gathering (I’m really bad at this & cringe with the memory of some failures)
- Moving from one task to another, especially if needing to transition from a “state of flow” or hyper focus (ref Damian Milton*)
- Into & out of the working day
- From work to lunchtime or after work social events
- Changing jobs (leaving one & starting another)
- From working to not working (structure to relative lack of structure)
- From coupledom to singledom (or vice versa)
- Dependence to independence, or autonomy
These are all transitions from A to B involving changes to our environment &/or our state of being ... a need (or demand) to switch our body &/or brain from occupying one real or metaphorical space at point A (where it may be very settled) to being comfortable doing something else, somewhere else,
at point B.
at point B.
But change can occur in isolation & can be planned, expected or unexpected ~ imposed upon or self-imposed ~ such as:
- Change of hairdresser, dentist, doctor or other professional or service provider
- Change of staff at a club (if lucky enough to attend in the first place)
- Change of members at a club or group attended
- Change of friendships, classmates, seating arrangements, teachers, TAs
- Change of rules
- Change of sensory input or stimuli, eg sudden loud noises, a certain type of music starting up, building works, gardening equipment, fluorescent lighting, screaming & shouting, temperature fluctuations ... & the list goes on
I hope I’ve illustrated how endemic transitions & change ~ & our potential reaction to them ~ are to our lives. We simply can’t avoid them even if we might try.
But why might we try? Read on!
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2. HOW & WHY WE'RE IMPACTED BY TRANSITIONS & CHANGE
In my introduction I mentioned observable behaviours that may indicate an adverse reaction to transitions & change, to disrupted routines.
We can become more avoidant, more resistant, quieter, less verbal, less coherent, louder, more verbal, more tearful, more angry, more easily confused, more indecisive, less easily consoled or we can simply become stuck (in mind &/or body) ... all are potential responses to feeling more unsure, more anxious, more scared, less safe as a result of change.
Our typically higher than average anxiety & arousal levels mean we’re typically more likely to perceive danger & feel unsafe during times of change; we’re typically more likely to have our hardwired survival instinct triggered, meaning a sudden, potentially uncontrollable need to flee, freeze, fight, fright or fawn (click through to read an insightful article by Changing The Narrative About Autism on Neuroception & PDA & explaining the Five Fs).
Faced with such reactions, it’s reasonable to conclude we autistics don’t like change & need routine.
But I don’t believe it’s wholly accurate, fair or safe to assume apparent resistance or adverse reactions to transitions & change are simply because we don’t like change (therefore will never like change) or because we must always have routine (therefore will never cope without routine).
I think assuming these things restricts & excludes us. I know because I’m an autistic person who has sought out & enjoyed change & who can become bored with routine. But I’ve also struggled & suffered as a result of change & with a loss or change of routine. So it’s important to ask & understand why. Which is exactly what I did ~ of myself.
As my own autism knowledge increased & expanded, & with my own diagnosis in 2017, I’ve often wondered how I succeeded in working at a senior level for a company who embraced & encouraged change ... whose ethos was one of continuous improvement & so continuous change. Because I embraced that change ethos too. Even changes that were imposed on me by others (well, some, not all!). And I genuinely believe, out of change comes opportunity.
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| via Pinterest |
Although, for us autistics, very often, chaos can succeed change.
On reflection, I believe the changes I weathered best were those that weren’t personal (or didn't feel personal) to me, those that were clearly made in support of achieving company goals, a better result for customers & those I could manage, influence or contribute to.
I was much, much less comfortable if I felt change was being forced on me for someone else’s personal gain or for subjective rather than objective & believable reasoning, if I felt personally at risk or targeted, left out or unfairly treated or if the change seemed just plain wrong. A few recognisable autistic traits emerge from this self-assessment & hint to why I & other autistics may resist & avoid change in such perceived circumstances:
a strong sense of right & wrong, a strong sense of fairness, difficulties interpreting others’ intentions & beliefs ~ so it’s a must to consider these traits, these differences, when imposing change on any autistic.
And I’ve happily embarked upon other self-imposed changes, like radical hair cuts, house moves, a change of decor, of room layout, of job, of holidays destinations & other environments. The key here being I’ve initiated them. I’ve been in control of the what, when & how even if they’ve not always turned out as expected (causing the odd meltdown, it’s true, especially on the hair front). They were my decision ~ I was responsible, accountable if not always wholly successful.
And, even though I worked for my last company for 25 years, I changed jobs every 2, 3 or 4 years. Sometimes at my own instigation, at other times in response to business restructure or remodelling. It’s true, each change was unsettling to some degree, but I was highly motivated to succeed so was hyper focussed & persevered to do so! The most unsettling job changes were those that, in my opinion, were very much imposed on me, seemingly personal & to my detriment, without adequate justification or obvious fit with company goals. Thankfully such changes were rare but do you see the difference?
Yet, in contrast, I have to admit I’ve been in situations where I’ve known change is needed, or I’ve wanted change, but have been unable to act. I’ve become stuck, panicked, frozen with the fear of something ... the fear of the unknown, the fear of others’ reactions or the fear of failure. So, sometimes, we can resist, avoid, even sabotage desired change.
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Here’s an example: early on in my working career I was offered a job I accepted. It was a complete change of career from Director's Secretary to a trainee management role in hospitality (where I’d been working part time on top of my full time job). I was flattered & excited by the new challenge but I couldn’t bring myself to resign from my full time job, or share the news with others ~ imagining unsupportive or disapproving reactions & not being able to work out what was the best option for me ~ so in the end, at the 11th hour (& 55th minute) I announced I couldn’t take the new job after all & carried on “as before”.
And a current example: I want to set up a dedicated space at home for "playing with clay". I’ve identified the equipment I want & I’m in a position to purchase. The garage has power (of the electrical kind) ~ but it’s full of items waiting to be sold. Having given up work to better support our #autismrich family, our household income halved. Selling years of hoarded, good quality but no longer needed clothing, toys, games, etc, would provide a welcome financial contribution. But the task of selling the accumulated volume of "stuff" has become an obstacle. I’m intellectually & physically capable. I’ve identified various options & would happily advise others on what to do & how ... but I can’t "transition" myself to physically tackle the task, despite the financial, emotional & personal rewards of doing so. I’m stuck & have been for many months.
Neither situation is the end of the world but sometimes there are more serious consequences to “becoming stuck” & being unable to act or speak up.
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So, I guess it IS true: we DON'T like change ...
IF the task required to change is overwhelming,
IF the change is badly managed, IF the consequences of change are unexpected or not as expected, IF we’re left feeling out of control, threatened & unsafe, IF the change seems unfair, unjust or wrong, IF the change is for change’s sake with no clear, objective purpose or IF the change & reasons for it are not adequately or convincingly explained.
Add to that
our communication differences
which mean these IFs are even more likely to be the perceived outcomes of change for us (vs those with neurotypical brains who might better interpret others’ intentions when not explicitly expressed).
Add to that
the impact of our busy, unfiltering brains
which means it can take longer to transition from A to B, to make a change. Some say autistics are challenged by slow processing. I’m not so sure. I don’t believe my brain is slow. I think it’s pretty fast but it can take me longer to get from A to B because, first, I have to get to A from wherever I am at the time (more difficult if in "flow state" or hyper focus &/or doing something I enjoy), then I have to navigate my way from A to B (again, more difficult if B is something I think I'll enjoy less) while also avoiding & overcoming a series of distractions & digressions en route to B & thinking about M to N, Z to Y & 1 to 2. Even if B is something equally or more enjoyable than A, transitioning from A to B can still be difficult if we’re preoccupied with A & if there are uncomfortable changes to sensory inputs to contend with.
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with all of yesterday in me?"
Leonard Cohen
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Add to that
our tendency to verbalise thinking out loud
which means we might verbalise initial thoughts, before we get to B & others might mistakenly assume we’ve concluded our thinking so give us the B, or chivvy us along to B, when really we just need more time to finish navigating our own thought paths. We will usually get there & we may well get somewhere beyond B.
So give us time.
But we may need help with acting on the outcome of those thoughts!
So give us time.
But we may need help with acting on the outcome of those thoughts!
Add to that
how tiring our normal thinking style is
which means when something different or unexpected happens, or is anticipated, it's even more tiring.
Add to that
at times of change, like the end of term or before a holiday, we are already even more tired than usual
which means just the thought of expending the effort needed to cope with a transition or change can be triggering.
Add to that
our higher than average anxiety levels
which mean we’re more likely to have a survival response triggered, to protect ourselves from the perceived risks of change (so flight, fright, freeze, fight or fawn).
Add to that
times of transitions & change often highlight our differences & difficulties
which means we may become more self-conscious, less confident, less willing to try or participate, lowering our self-esteem still further. Whether that’s because we didn’t achieve to our ability in assessments, didn’t achieve ideal attendance, didn’t win an award, didn’t have our exceptional but unnoticeable efforts rewarded, didn’t have as many ~ or any ~ friends to enjoy the end of year party with, can't enjoy end of term events for sensory reasons, didn’t perform in front of others at sports’ day despite looking forward to it, didn’t sit on a stage in front of a church full of people for our leavers’ service even though the day is just as meaningful (& potentially more emotional) for us, didn’t settle into a new job (or more accurately into those work based social relationships) as quickly as others ... didn’t, didn’t, didn’t ... all forcing us to feel different & some how less.
In summary, at times of change, we can feel exposed, vulnerable, different for all the wrong reasons & people’s behaviour towards us changes, varies, becomes uncomfortable for us; so we’re not only dealing with a change in our environment or state of being, we’re dealing with reminders about our perceived inadequacies or differences & changes in others’ responses to us.
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In contrast, when we’re in a routine, we know where we are, we get by, unnoticed, or noticed less, we stand out less, or are noticed more on our own terms.
But with the right approach, with genuine understanding & support, such times of transition & change can be successful, differences can become strengths, self-doubt can become confidence, like being one of the top 20 achievers in your year group in the end of year assessments (well done child of mine ... the result of genuine collaboration between home, school & child &, in this case, the benefit of accommodations made possible with an EHCP & a dedicated & understanding teaching team).
But with the right approach, with genuine understanding & support, such times of transition & change can be successful, differences can become strengths, self-doubt can become confidence, like being one of the top 20 achievers in your year group in the end of year assessments (well done child of mine ... the result of genuine collaboration between home, school & child &, in this case, the benefit of accommodations made possible with an EHCP & a dedicated & understanding teaching team).
No wonder,
all things considered,
our reaction to change might be more marked, more extreme, than others might expect in a given situation.
all things considered,
our reaction to change might be more marked, more extreme, than others might expect in a given situation.
No wonder,
all things considered,
we may resist change, even changes that might be good for us or necessary, sometimes staying in unhealthy situations longer than is best for us.
all things considered,
we may resist change, even changes that might be good for us or necessary, sometimes staying in unhealthy situations longer than is best for us.
No wonder,
all things considered,
we may become stuck in routines because it feels safe or because we simply can’t get to A or beyond to work out how to transition out of that routine.
all things considered,
we may become stuck in routines because it feels safe or because we simply can’t get to A or beyond to work out how to transition out of that routine.
And with transitions & change come actual endings & actual beginnings which, in themselves, are significant changes that can be difficult for autistics to navigate.
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Another lived experience: When I left full time employment I faced unexpected & unsettling reactions & emotions to leaving a company & colleagues I’d worked with for 25 years; I struggled to manage my days without the structures, systems & routines of work; I didn’t recognise myself in the way I interacted with others ~ I felt I could no longer even speak coherently without the discipline, structure & professional language I’d previously adopted daily; despite having a clear purpose for leaving work & focussing on family, I felt chaotic & often out of control because the path to our new B was under constant barrage, littered with obstacles & furnished with rugs constantly pulled from under. I knew I should be capable, I knew what I should be doing but I wasn’t always able & I didn’t know myself.
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Now, on the other side of an autism diagnosis, I understand why & I know what might have helped & how I & others might have done things differently. But I am still not immune to the impact of change or my autistic traits.
Which brings me to the last section.
3. WHAT HELPS
I’ve talked at length about the pitfalls of badly managed transitions & change & already hinted at ways to help. Here’s a more comprehensive ~ but by no means exhaustive or exclusive ~ list (or buffet) of ideas that have worked for us:
Verbalise / Visualise / Check Understanding / Repeat Plans (even if there are none)
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Don’t assume
we intuitively know what others know, or feel what others feel, like knowing what day of the week it is!
we intuitively know what others know, or feel what others feel, like knowing what day of the week it is!
“Mum, what have you done with Sunday?”
The question asked indignantly of me one morning at the unexpected realisation it was Monday & a school day.
Monday morning surprises aside, I used to find weekends & holidays more difficult when we weren’t doing anything in particular & if I hadn’t made this clear; basically when there was no obvious structure to the time. So now we visualise & verbalise our weeks, weekends & holiday plans in pursuit of mutual clarity, of a shared understanding & acceptance of plans. We provide structure even when we’re doing nothing of note:
- We mark off each day on a wall calendar (or, more accurately, a family planner)
- Weekly or holiday schedules are also drawn up in plain site detailing appointments, days out, down days, back to school days, homework, clubs, sometimes key chores ~ ours if it means we’re unavailable, theirs if a treat depends on it!
- Again, we mark off days so we know where we are, what’s coming next & we verbalise, so “it’s Saturday, we’ve been swimming, tomorrow is Sunday, there’s this homework left to do which is due on Tuesday” ... all to manage expectations & avoid surprises, “counting down” to key events, Mondays & back to school days. I think this is where talking out loud to ourselves can be a benefit ... I do it automatically so I’m often inadvertently verbalising most things! (And I would normally delay swimming until after the homework is complete but sometimes needs must!).
- A visible plan also serves as an effective reminder of what we’ve done ~ this “reviewing” seems to make them feel happier about the time they’ve had & so happier about returning to school.
- To do lists (for me). I don’t function well without them. I have lists for all sorts in various formats, online & offline!
- Also visualised for everyone (most weeks) is our evening meal menu, shopping list, places to go ... which seem to act as a simple, non verbal reassurance that things are in hand, noted, not forgotten.
- We’re still flexible ~ even the best plans have to change ~ but changes & consequences & new commitments are communicated as quickly & clearly as possible.
Routines / Few Words / Simple Prompts / Visualisation / Motivation & Patience all help with Transitions
“I’m not going to school today.
What’s the point?”
Assuming it’s a day when school remains possible (because some days it’s just not, especially for a PDAer) then this is how we approach the daily transition of getting up & getting ready:
- Gentle, patient (persistent) awakenings, slowly, quietly rousing from sleep (no bright & breezy singing, no shaking, no throwing back of curtains or covers ~ such tactics are not conducive to compliance in our house)
- A family pet can earn their keep at this time too!
- Alarm clocks give them control (although I’d check the alarm itself is sensory friendly)
- Breakfast options are visualised so they can just point; they're unlikely to be ready to process multiple questions/options about breakfast or even be that verbal yet so, to maintain all our moods & for speed, a quick copy & paste from a supermarket website produced an A4 prompt sheet visualising the cereals, toast, spreads available in our house & it’s been one of my best ideas (quickly followed by the acquisition of a laminator)
- Meds laid out ready, eg for asthma, eczema, anxiety
- Clothes ready in order (each of mine dresses in a different order ... I don’t think there’s any harm in facilitating such routines if it means one less brain process to navigate at this time)
- Reminders, or signposts to the next task, are often single words like “socks” or “teeth” or even just a touch or gesture (I know some visualise the full getting ready process)
- School bags & lunches ready the night before
- Timetables to hand in case a reminder of what’s coming that day is needed ... a favoured lesson or a music lesson may be just the motivation needed to getting ready
- Patience & kindness is always quicker & more productive than loud voices & threats (I’ve tried it all & this is my proven, evidenced conclusion!)
When I consider my own preference for several snoozes, coffee & an hour to come round before comfortably connecting with anyone else (children & pets aside ... if absolutely necessary) I think they do pretty well to be fully functioning & ready for school in the time that they are. I know some people have looked at me as if to imply I’m molly coddling but despite the approach, they’re all articulate, well mannered & able to dress & feed themselves (if & when they’re not that’s when you know they don’t feel safe). So, on school days, when anxieties can be high, those seemingly simple transitions can be very difficult & anything that helps keep anxieties at bay is fine by me.
“No”
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For other transitions, like leaving a playground or having a shower, then tried & tested tactics include:
- The infamous five minute warning
- “When I’ve counted to 30 ...”
- “At the end of that video ...” or “At the end of that episode ...” (easy if they’re into Peppa Pig or Minecraft videos) otherwise ...
- Egg timers (those large colourful timers often used at play farms to time sessions on activities) useful for activities without a naturally short duration, like console games or playing in the garden. We have 1, 10 & 30 minute timers.
It’s the warning that’s most useful & the calm, “no nagging” time after allowing them to register & prepare for the change in activity, for the mental & physical transition. I have very rarely experienced descent after using one of these methods & often wondered how I got away with it so easily, especially the counting down tactic. If a problem did remain then this is usually a sign that a much bigger issue needs addressing.
So in times of change, especially permanent change, identify & set new routines.
Routines anchor us & should be set to enable achievement (not to avoid change, not for the sole purpose of benefiting others, not to prevent us achieving).
I think if I'd planned & set a few routines when I left full time employment, it would have helped me manage that transition better. I had visualised & verbalised certain routines but I didn't actually set them down in stone or stick to them necessarily. I realise now how easy it is to become overwhelmed with the day to day, become lost in certain tasks, in have your days absorbed by other people's priorities. Routines are a necessary way of organising ourselves, keeping on top of things, remaining in control, achieving for ourselves as well as others.
So in times of change, especially permanent change, identify & set new routines.
Routines anchor us & should be set to enable achievement (not to avoid change, not for the sole purpose of benefiting others, not to prevent us achieving).
I think if I'd planned & set a few routines when I left full time employment, it would have helped me manage that transition better. I had visualised & verbalised certain routines but I didn't actually set them down in stone or stick to them necessarily. I realise now how easy it is to become overwhelmed with the day to day, become lost in certain tasks, in have your days absorbed by other people's priorities. Routines are a necessary way of organising ourselves, keeping on top of things, remaining in control, achieving for ourselves as well as others.
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| Image via Pinterest (origin unknown) |
Preempt / Prepare / Plan / Anticipate / Adjust / Adapt & Involve in finding Solutions for Change
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| Image from An Affinity With A |
So read the school planner entry
for an upcoming curriculum enrichment day!
for an upcoming curriculum enrichment day!
On potential poo days a 121 on what to expect & agreed flexibility on participation can do wonders in alleviating anxiety. Identifying & addressing specific concerns, knowing they’ve got options on the day if things get too much, can move someone from fleeing, or avoiding, or worse, to feeling safe about having a go. And if “normal” participation is impossible, then consider other roles that enable inclusion rather than settling for exclusion: like a runner or score keeper on sports day; a director, prop designer or music technician for a class production (grand titles for simple tasks like prop scavenging or CD player operator, maybe, but they add to a sense of self-worth that can otherwise be irreparably damaged if the alternative is exclusion); allowing them to come dressed as Mr Tom’s dog on Evacuee Day or a parrot on Pirate Day.
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& flexible about your methods”
Author unknown
But equally, consider alternative arrangements for the things you don’t need to be stubborn about.
For example, some assemblies may be better missed, to provide some down time or recovery time to maintain or regain what Occupational Therapists call a “calm alert” state (the desired state for learning) as opposed to a distressed, agitated or tired state brought about by an over stimulating assembly hall or simply having done too much.
For example, some assemblies may be better missed, to provide some down time or recovery time to maintain or regain what Occupational Therapists call a “calm alert” state (the desired state for learning) as opposed to a distressed, agitated or tired state brought about by an over stimulating assembly hall or simply having done too much.
Similarly, does an autistic child have to be out in the playground (where they often feel isolated & vulnerable) if what they need is some time to quietly recover from a chaotic music lesson before a PE or maths lesson?
Replace Fear with Safety
That’s what many of the earlier suggestions do ~ remove the fear, alleviate anxiety, create a sense of safety ~ the most basic of human needs. Which, again, is why it’s important to understand the intention behind a behaviour rather than judge the behaviour. Avoidance may simply be the fear of getting things wrong, a manifestation of perfectionism. Of course, it might be many other things & might be much more complicated. But it is usually a fear of something & if we don’t find out what we may never address appropriately.
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“How many things would you attempt
if you knew you couldn't fail?”
if you knew you couldn't fail?”
Robert Frost
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Our communication & theory of mind differences mean we can’t always interpret, predict, foresee others’ intentions or beliefs, about us or about situations. If we feel threatened, targeted, unsafe, it will destabilise us & we may resist or avoid as an act of self-preservation. Keep us safe, preempt, avoid, mitigate those feelings. For children especially, identify their safe place & safe people (although we couldn't use these terms for one angel fish because it made them feel too different, instead school positioned as something available to all, if needed, & of course for most they weren't).
We need to know we're understood & genuinely cared for. We need trusted advocates.
We need to know we're understood & genuinely cared for. We need trusted advocates.
The start of a new school year is particularly fear inducing & the usual moving up day(s) in the summer term may not be enough to alleviate.
- Did they met their new teacher?
- Have they met their new teaching assistant?
- Do they know where their peg will be?
- Where they’ll be sitting & with who?
- Can they have sight of their timetable?
- What accommodations will be in place for them?
- Will they be allowed to self-regulate in their usual ways?
- Where can they go if it all gets too much?
- What are their options during break times?
- Will their new teacher understand them?
- Will their classmates understand them?
- Will the older kids be kind?
If we're going somewhere new we will research places online. Although the websites never seem appealing enough for mine to look at for long & can often put them off places but I need to know enough to confidently communicate details in advance & appear to know what I’m doing on the day! Any uncertainty on my part can quickly sew seeds of doubt & insecurity in them so I may:
- Locate & eyeball on Google maps & street view
- Check travel or parking arrangements
- Check travel or parking arrangements
- Check if there are any helpful access arrangements
- Pre book
- Work out timings (when might it be quieter)
- Consider quiet zones/safe zones for time out
- Consider when/where we will break for refreshments
- Be ready & willing to abandon at any given moment
But then there are times when mine can be blindly optimistic about change & for some events may want to retain the element of surprise ... to enjoy the anticipation & excitement of something new with their peers, to not stand out by being treated differently. It’s still worth being prepared, collaborating with school, say, to consider what might trip them up & have a plan to “save” the situation if needed. Very often, if it’s something they want to do, those plans won’t be needed but it’s reassuring to know they exist.
Because sometimes they are needed.
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A lived experience: We did have an occasion where one angel fish found they were quite literally frozen with fear on one side of a street unable to contemplate passing through a group of young people to enter a venue to meet a then friend who was already inside (small venue, small group of people). Overcoming required the help of staff to offer an alternative way in, via a side gate, with detailed descriptions, step by step to move from point A to point B via one path to another, to a side gate, to a corner wall, to a side door, to an inner lobby & eventually into the venue proper. Once in, all was fine.
Motivate & Depersonalise
Give clear, objective reasons for change. .
Answer the “what’s in it for me?” question.
So there’s a clear, practical purpose that may benefit us but it’s not because of us, to change us, to fix us.
If necessary, bring to life by drawing an analogy that links to a special interest to make the reason for change relatable.
If necessary, bring to life by drawing an analogy that links to a special interest to make the reason for change relatable.
“One reason people resist change is because they focus on what they have to give up, instead of what they have to gain.”
Rick Godwin
Be Kind to Yourselves
Towards the end of term, we bring bedtimes forward a tad to keep tiredness at bay & we plan a treat or two to look forward to, to motivate us & keep us going.
When mine were younger, sometimes just giving them a day off to recover was enough to get them back on track. We treated it as a school day & linked activities to school topics for that day. Nothing too onerous but they were always so willing & so grateful for the time & they were ready & happy to try again the next day (when in the right educational setting!).
It's not something I've felt the need to do often, in fact I've done it only a handful of times, but we've benefitted each time. Although, it's worth mentioning here, with PDA this sort of time out can be a much more frequent need, or consequence of a lack of suitable settings.
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Allow More Time
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We are not slow, we are fast but we are processing multiple thoughts & stimuli so transitions & change may take us longer. Where possible, allow for that. And keeping things calm saves time in the long run.
We are not slow, we are fast but we are processing multiple thoughts & stimuli so transitions & change may take us longer. Where possible, allow for that. And keeping things calm saves time in the long run.
Ask how you might help ... or just help
“I need solitude to empty my mind of people, then I need people to empty my mind of me”
Vazaki Nada
We may not know how you can help if you ask but knowing you’re there to help, that you get it, that you care, helps. If we say we don’t know, don’t keep asking though ~ we’ll think you’re not listening, that you don’t get us, that you can’t help!
Don’t assume I’m a workaholic, or disorganised or anti-social just because I’m always working late or never taking a lunch break.
We can get stuck & may need help to get unstuck, especially if a current situation is harmful or unhealthy.
Help us move on when it’s in our best interests. We have tremendous perseverance & may keep trying because we think we should even when we shouldn’t!
Help us move on when it’s in our best interests. We have tremendous perseverance & may keep trying because we think we should even when we shouldn’t!
When Words don't Work
Often, when words don’t work, I grab a notebook. I have one dedicated to conversations with my angel fish. We’ve had written conversations, comics strip conversations, multiple choice conversations, drawn conversations ... whatever works to overcome the block, or to break through the mental clutter preventing a verbal exchange.
I’ve used it to get to the bottom of issues at school.
To explain how secondary schools might differ & the benefit of an EHCP.
To obtain a choice from the fish & chip shop.
Recognise our talents, our skills, our strengths & remind us of them often as we usually think the worst of ourselves & find it difficult to remember the good. And we do possess the skills for change given the right circumstances.
4. THE BOTTOM LINE
Really, it's about how we're made to feel.
If we feel understood, supported, trusted, involved, valued, empowered & safe we can succeed, even excel, at change. Just like anyone else. So approaches to facilitate transitions & change should be aimed at enabling & empowering us ~ at giving us equal opportunity ~ not at fixing us or making us less of a problem for others.
And having experienced the pitfalls, & problem solved our way out, of so many transitions & changes we might even become quite skilled at managing change for others (if still not for ourselves) ~ there's one career option right there!
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5. A FINAL WORD ...
... on actual holidays,
seeing as that's where this post started!
This year we’re returning to somewhere we’ve been before. The same holiday house in the same location (obviously!). We know how long it will take to get there, who’ll sleep where, we know where the shop is, how long it takes to get around & places to go, we know it’s quiet & very beautiful & we can only see one set of neighbours (& not all the time). Last time we didn’t manage to get out of the car much so we didn’t really see the sights but what we did see was still incredible & awe inspiring. Last time we went for a week. This time we’re going for two. This will give us time to settle into the space & our surroundings & recover from the journey, we can give ourselves time between outings, not rush around trying to cram too much in, counting down the days before they’ve even begun, expecting a 2 week experience in 1 week & barely achieving more than we would in a long weekend.
seeing as that's where this post started!
This year we’re returning to somewhere we’ve been before. The same holiday house in the same location (obviously!). We know how long it will take to get there, who’ll sleep where, we know where the shop is, how long it takes to get around & places to go, we know it’s quiet & very beautiful & we can only see one set of neighbours (& not all the time). Last time we didn’t manage to get out of the car much so we didn’t really see the sights but what we did see was still incredible & awe inspiring. Last time we went for a week. This time we’re going for two. This will give us time to settle into the space & our surroundings & recover from the journey, we can give ourselves time between outings, not rush around trying to cram too much in, counting down the days before they’ve even begun, expecting a 2 week experience in 1 week & barely achieving more than we would in a long weekend.
In a long weekend, a short break, you’re limited & plan accordingly, arrive, settle, day trip here, explore there, maybe a visit somewhere else before heading home. Expectations set in advance, communicated, visualised without even thinking about it ... because time is that tight.
Lessons learned. Treat 1 week like a long weekend & select accordingly! If you want to go further, do more ... allow more time, plan, select as much from the buffet as is reasonable for a fulfilling, restorative, holiday of happy memories of being together ... because that’s what we all want at the end of the day, time together, happy.
This holiday we have time to be flexible, to stay safe. We will have more wow days than poo days & if we can’t face going out we have a view ~ poo with a view even ~ we have space & we have jigsaws & books, we have WiFi & we have each other.
And we have space not to have each other if we so choose!
And we have space not to have each other if we so choose!
We will still try new destinations. I always like to discover new places. But we will continue to try to minimise the risks of the unknown by selecting as carefully as possible & weathering the storms that come.
So, from me to you, happy holidays, whether at home or home from home.
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Addendum
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As I was tidying up this post ready for publication I was distracted by tidying of another kind & came across a couple of relevant publications that might also be helpful.
I'm sure most autism related resources cover the subject of transitions & change at some point but here are just two from my own "personal library" that might be useful to parents & teachers of autistic children at this time of year especially:
Both quick reads & structured for easy dipping! The first may not be autism specific but still contains lots of useful, relevant, adaptable advice.
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