The Wrong Environment For A Child Hold on to your seats…. This may get a bit ranty!!!

I absolutely love my job, the autistic children I get the privilege to meet and get to know are incredible. I’ve said it before but it needs saying regularly; they are brave, resilient, and beautifully natured. This makes it all the more frustrating, overwhelming and upsetting when it comes to doing the hardest part of my job….. Fighting for their rights, fighting for what they need and more importantly fighting for what they deserve. This part of my job leaves me with days of anxiety and overwhelm.

What needs to be made clear is that autistic people aren’t going anywhere, in fact quite the opposite, autistic people grow up to have autistic children……. Yes we literally are increasing in number…. Some refer to this as an autism epidemic!!! Well that’s bloody charming isn’t it! In fact it’s disgustingly insulting. What are we some form of disease that is a threat to human kind? NO, we are a community of good, strong hearted people, people who drive change, people who invent and create amazing things. We are the best Drs, nurses, scientists, teachers, animal conservationists, eco warriors, parents, advocates …. The list is endless.

So prevalence is increasing, I already see at least two autistic children in each class of 30…..a much higher number than recorded. So why, oh why, can’t we change the school environment to meet need?

What ‘the powers that be’ need to know is that autistic children are the (to quote Jo Billington) ‘canaries in the mine’. They are the sensitive ones that are feeling the pressure of mainstream class sizes, increased educational expectations, behaviour policies, over stimulation,  school uniform policies……….but actually aren’t ALL children starting to show signs of this?

 YES! Mental health problems in children are on the rise! Making a school ‘autism friendly’ isn’t making a school ‘neurotypical child un-friendly’ in fact quit the opposite…. It’s making a school child friendly. Autism friendly strategies are actually all gold standard best practise for all children! What child wouldn’t benefit from smaller classes, more outside learning, more experiential learning, more moving while learning, more emphasis on emotional literacy and self-care?

School life does not reflect adult life!

A common argument I hear against reasonable adjustments is ‘they have to get used to it’, ‘we have to prepare him for the real world/adult life’.

Well that’s a crock of rubbish!! In what job would you be told you can’t use the loo except during designated breaks! In what job would you be made to sit on a hard floor squished up next to a colleague and sing songs? Why would a person who works best with their hands and while moving opt for a job sat still and quiet? The adult world is a much better place for autistic people. In fact mainly due to autistic people….. We can now order food online and avoid supermarkets altogether, we can work from home, we can take breaks when we need them, we can socialise with people when and how we chose to! Sometimes not face to face, sometimes not with those our own age. 

What are the repercussions?

Well if you are a parent of a child who’s needs are unmet you will know all too well the impact L however if you don’t then you should.

I’m going to outline this simply and bluntly; the children I work with who haven’t had needs met in education and/or been subjected to an environment that is inappropriate suffer the following;

Self-harm

Trauma

Low self esteem

Feelings of failure

Depression

Anxiety disorders

Suicidal ideation

Suicide attempts

Agoraphobia

Mis-trust of any adult outside of the home

Separation anxiety

Environmental mutism

Tics

Many children are unable to return to school. Even the mention of school can produce a trauma response (fight/flight). A child becomes a ‘school refuser’ which in itself it’s damaging and incorrect, as the child is simply in self-preservation/survival mode at this stage and so are UNABLE to attend not refusing. It can be likened to a child ‘refusing’ to jump into shark infested waters! Or the term I often use from a parents perspective ‘it feels like you are sending the lamb to slaughter’ (I’m not great with subtle words!) My experience of this comes from children of all ages, already showing these symptoms from as young as 4years old.

  

What needs to change?

Surprise surprise I have a few ideas about this!!! I will simply list them!

More funding to provide;

ALL school staff training in autism, PACE & trauma. Up to date progressive thinking Dr Luke Beardon style training! Including MDSA’s.

Smaller numbers of students per class

More staff who have been invested in through training and care.

More pastoral support

More SENCo time

More specialist input, such as educational psychologist, occupational therapist and speech and language support in mainstream schools. A holistic approach.

Environmental changes;

Less ‘overstimulating’ classroom settings and layouts

Moving while learning

Flexible/positive behaviour policies (or just scrap them!)

Flexible approaches to uniform

Flexible approaches to teaching

More animals, nature and outside!

Curriculum changes;

Experiential learning

Functional learning

Child lead learning

Emotional/mental health/self-care education

Less attainment/progress pressure (for teachers and students)

The list could go on. I truly believe that if this was how mainstream education looked, we would be seeing less children needing EHCP’s, less children needing specialist placements and less children needing to access mental health services. And most importantly; less children suffering,

I know this is possible, I work with and know there are some amazing schools, SENCo’s and teachers that make this happen or try to make this happen for their students. I know many amazing people’s hands are tied by funding restraints, policies and ‘the powers that be’. The rigidity and inflexibility is damaging.

 How do we make this a reality?

I don’t know!!! I am not great at big battles and making big change! I make small changes for small people! Well I would like to think sometimes bigger changes for children and their families. But this is BIG. I talk with many about opening a school like this, I already have a team of staff who want to work in a school like this!

I wish I had as many viable solutions as I do issues with the system.

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Curiosity Killed The Cat, But It May Just Save Our Children!

Some years back I attended some training on using Dyadic Developmental Practice (DDP)  in supporting children who have experienced developmental trauma, during which I was introduced to the concept of PACE. The PACE approach focuses on P- playfulness, A- acceptance, C- curiosity and E- empathy. (I would recommend the Dan Hughes link below for more information regarding PACE).

Two things occurred to me; this approach should be used for ALL children AND surely curiosity is how we all respond to children! Being a natural people watcher and analyser I knew of no other way, yet it seemed this wasn’t the norm!

So now within my role in supporting parents to support their child and working with schools to adapt to individual needs, I talk about curiosity a lot! And as a parent I try my very hardest to use this each day (although I’m only human and sometimes energy levels don’t allow!)

Curiosity is a given when we are amongst adults! A colleague is late for a meeting, we wonder why? Are they ok? A good friend gets short and impatient with her children, we worry, they need a break. Our partner complains of insomnia and feeling unwell each evening, we worry about their physical and mental health.

Yet when it comes from a child we assume they didn’t care about being on time, they are rude and uncaring or they are attention seeking or avoiding. Maybe they are late because a friend was upset or hurt, maybe they were rude because they have had a hard time at school that day and too need a break, may be they are unsettled at bedtime and complaints of feeling sick are due to anxiety.

Let’s consider how this could look in school. A child is told off for talking in class; he is deemed disrespectful? Or maybe he is supporting his struggling friend sat next to him. A child is not sitting still and deemed unable to listen nicely, what if maybe she needed the loo but is too scared to ask as she knows she should have gone at break. And on that matter, in what work place would an adult be restricted to go to the toilet only in scheduled breaks?!

Anyway, the biggest point I want to make is the importance of curiosity when we are parenting, caring or educating a neurodivergent child (i.e. an autistic, ADHD) or any child for that matter, but especially for a child who is possibly less able to understand, articulate or verbalise their needs or distress.

Often a child who is autistic will behave or respond differently to a non-autistic child. This is because they experience the world in different ways and they may communicate their experiences in a different way. Either way their experience is real and valid i.e. if a child finds the noise of the hoover upsetting then that is real and a genuinely distressing experience even if the rest of the family don’t feel it in that way. Something I hear often said to a child is ‘just ignore it/them/her/him; the response the child often given is ‘I can’t just ignore’. This is real and truly excruciating for a child who is already possibly overwhelmed by the environmental factors such as; the sensory onslaught, the social expectations and demands and then some adult turns around and says ‘just ignore’ the annoying tapping of the child next to you, or the fact that your shirt feels uncomfortable. Overload and meltdown are likely.

So I suppose we need to be curious as to what is going on under the surface; under the surface of the iceberg, below the surface of the water of the swan. Many children I see don’t feel the build-up of their emotions, many parents talk about their child’s emotions going from 0-100 in the blink of an eye. Many children will try to mask or suppress emotions in unsafe feeling environments (see my last blog for more on masking), some children have differences with Interoception, in that they don’t feel the internal sensations that tell us our emotions are stirring e.g. that pounding heart when we feel anxious. Some children have alexithymia; difficulty feeling, understanding and communicating emotions. This interferes with children managing their emotions and is actually quite scary when you think a child could very suddenly be overtaken by a flight/fight response at any given time with no warning!

So with all this going on; sensory differences, different communication style, difficulties with understanding and communicating emotions, how can we respond with anything but:

Curiosity; what  why? What is my child communicating & what is the cause of her distress? Why may they be behaving/presenting this way? What is their experience and why?

Acceptance; my child is angry, overwhelmed, uncomfortable and although I don’t have the same experience, it is real for them. It’s hard accepting that my child is distressed and it may hurt me when they feel this way, but emotions are neither good nor bad and not accepting them does not make my child not have them or feel any better. I.e. ‘you’re ok, that doesn’t hurt’ when a child falls and cries, doesn’t take their pain away!  Imagine sat with a group of friends, talking through a negative experience you have had and your friends say ‘oh you will be ok, it wasn’t that bad’! I’m not sure you would feel understood, listened to and cared for!

Empathy; although I don’t feel the same way I can validate and empathise with my child’s experiences i.e. ‘I can see this is really hard for you’. The myth of autistic people not having empathy is still going strong! (This is absolutely false by the way!) And yet so many still have a lack of empathy for the lived experiences of autistic people. Empathy comes easy when we truly understand our child’s needs and experiences.

In practice (i.e. real life) curiosity could look like this; a child is ‘refusing’ to leave the house for a walk. Her refusal could look like; refusal to get dressed or put shoes on and/or dropping to the floor at the door, seemingly having a ‘tantrum’. One response maybe to shout, force and insist without question, inevitably causing further distress communicated in ‘challenging behaviours’ from the child OR a child going into submissive/fawn mode and eventually being forced into complying (often being made to feel like they are ‘ruining it for the whole family’ or ‘a naughty child’ if they don’t). HOWEVER let’s throw curiosity into the equation!  A child refuses to get dressed; why won’t they get dressed today (bearing in mind they may be unable to tell us what’s up, why they are struggling, not linking it with the walk even)? What have we planned today that maybe a struggle for them? What did we do yesterday that they are still de-compressing from? Do they need more down/chill time? Do they need some reassurance? Do they need some preparation or control over today’s events? What about a walk could they be struggling with? The child’s perspective could be; “last time we went out walking Mum stopped for half an hour to ‘chat’ to the neighbour who asked me lots of annoying ‘small talk’ questions like ‘how’s school?’ which is rubbish as I hate school but no-one ever wants to hear that!” Maybe the walk is overwhelming and scary as it involves crossing a busy road which always has loads of motorbikes/sirens/lorries on. Could a walk be causing physical distress, “every time I tell Dad my legs ache he tells me ‘we are nearly home’ when actually we aren’t and I’m in pain!” or “every time we go for walk we change the route, which means the walk is unpredictable and stressful for me.” If we could have empathy for this we could make adjustments and agreements that make the walk feel less scary and overwhelming for a child OR we consider if maybe it’s too much for a child to manage today and he needs to practice some self-care.

How could this look in school? The child punished for copying her partner is maybe struggling to process auditory information when the teacher gives instructions. The child deemed inattentive and always ‘daydreaming’ is needing to look away from the teacher in order to process what is being said to her. Curiosity in the classroom is paramount for ensuring needs are understood and met.

Re-framing our children’s ‘challenging behaviours’ as a communication of their distress, their overload and their frustration with a world that so often goes against their neurology aids empathy, which in turn naturally aids us to respond with nurture and care which in turn ensures our child has good mental health.

Curiosity has to be the first step to this!

Jodie

Jodie.smitten@behaviourservices.co.uk

https://m.facebook.com/Childrens-Behaviour-Support-Wiltshire-606003673066792/?ref=bookmarks

Further Reading

PACE; http://www.danielhughes.org/p.a.c.e..html

Masking blog; http://www.smarttalkersblog.com/2020/06/but-they-have-no-problems-in-school.html