Girl on the outside

I sit here with tears streaming down my cheeks wondering whether you’ve noticed that the girls were mean to you today.

I suspect you have, as you’ve needed dark quiet since we got home, you were pale and withdrawn.  You went into shutdown.

I could see you desperately trying to be one of them.

I know you don’t know how to join in and I feel like I’ve failed you.

My heart breaks that you’ll never truly relax in social situations, it must be so exhausting for you.

I want to wrap you in my arms and make the world a kinder place.

 

I sit here with tears streaming down my cheeks, the mean girls excluding you ignites a flame of angry sadness within me.

I feel fiercely protective and want to rewind the week. I watch you try and I see their subtle rejection.  It’s sly, almost imperceptible and sophisticated beyond your years.

I pray you don’t notice and don’t feel that searing burn that rejection from a friend brings.  The betrayal, the apparent about turn.

But I see you notice something is off.  Your friend who you normally giggle with is cold shouldered and aloof.  She’s trying to impress an older girl and your sweet naivete isn’t cool enough.

Your confusion is encoded in your eyes and body; a language only I can read.

They are slightly taller and walk at a pace just faster than yours, their step in time, you a few feet away, trailing, rushing trying to keep up.

They whisper about secrets from their sleepover the night before, you know nothing about as you’ve only joined today.

They look to each other before deciding what to do next, your opinion irrelevant in their eyes.  They know you’ll fall in and do what they decide.

Their quiet confidence a stark contrast to your permanent internal questioning.  Their certainty that they belong, you the outsider, the visitor, the spare wheel.

I’m sorry my darling girl.  I feel I’ve failed you.  You don’t know how to join in, you don’t know how to be one of them.

We’ve tried to rehearse and practice but you avoid that sort of help from me just now.

I’m powerless to change the inevitable world you’ll face.

I’ve met them throughout my life too; the mean girls, the subtle exclusion that wields power over the one who doesn’t quite ‘get it’.

I wish I could make it easier, I wish I could make it fun.

Instead I say to you – “do ‘you’, be ‘you’ and be proud of who you are.”

Your intentions are pure, your heart is full and your soul is kind.

You are perfect and in the end you will find your tribe.

It won’t be easy and it won’t be quick but whilst you are waiting, be true to you.

Do what you love, be who you are and perfect the best version of you that you can.

It’s ok not to know what others can do naturally.  They don’t know what you can do excellently.

My promise to you is that I will never tire of trying to get people to be kind and compassionate.

I can’t promise to make people be different, as human nature is beyond my control, but if I can persuade people to behave differently then at least some good will have come from all of this.

In the meantime darling, I know you will continue to want to be friends with these people and I know they will confuse you.  I will try and enlighten that confusion but know I am always here to hug away your sadness or to give you quiet, dark space to decompress.

You are safe and I am the bubble around you that will keep you safe.

To the girls who were mean to my daughter I say;

Being a girl is hard and I know you are sweet inside.

I know you still play and giggle but I see you growing and changing.

You test the waters of growing up, dipping a toe into being a bit older

and playing older games that you make up as you go.

My daughter tried.  She can’t keep up, she’s wired differently.

Please be kind, please accept her as she is and please let her go gently when you inevitably move on.

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I’m not an Anxious Parent…. normally

Regular followers know that Little Miss H is autistic.  She is a master masker and the way her autism affects her is not always readily visible to others.  She internalises.  So a child who flaps externalises their anxiety or over-stimulation, Little Miss H has the same reaction to various stimuli but instead of flapping her hand/arm, her stomach muscles do the action instead so her innards clench and squirm, she gets extreme butterflies in her tummy and her heart beats faster, her reaction is private, hidden but no less there and no less real.

I can read her signs and can see the stress usually, but I am her mother and I know her well.  Others generally can’t.

She’s a master masker and it can take years to see the real her especially if you only see her occasionally.

We go to appointments and the moment the practitioner appears, her personality changes.  Her mood shifts and her behaviour alters.  She’s Selective Mute as well, so often she folds in on herself both physically and vocally – her head shrinks down in between her shoulders like a turtle’s neck retracting, her head tilts down and she barely looks up, she positions herself behind me or into my side and goes quiet, her voice changes, both tone and timbre.  Sometimes timid, sometimes gruff.  She becomes I child I don’t recognise.  I’m beginning to get familiar with some aspects of these sides of her and learning ways to interact with her when she is like this but it’s not something we get to practice as it only happens in certain situations which we can’t replicate so it’s not something I am familiar with enough to be the experienced confident mother.  I’m practicing on the job if you like!  Sometimes she’s compliant but shy, sometimes she’s aggressively resistant, sometimes she’s silent, sometimes she answers questions, sometimes she doesn’t tell the truth as she just says what she thinks they want to hear, sometimes she shouts, sometimes she whispers.  Sometimes she’s scared, sometimes she’s angry, sometimes (though rarely) she’s fine!

I never know which way it is going to go, it all depends on so many variables; who else is in the waiting room, time of day of appointment, whether she’s hot, hungry, thirsty, how her day has gone so far, whether the practitioner is a male or female, whether they are warm and welcoming or cool and professional, how they greet us, and so on…..  She can sense when someone is analytical rather than open and she feels on edge by that.

It’s not like she shifts into one single other persona that I recognise and am familiar with – her reaction is unpredictable and erratic and as a result I’m working it out as I go, whilst also trying to achieve whatever the appointment is about.  I’m testing the waters with my daughter as I go, walking on egg shells trying to prevent a meltdown, trying to focus on getting the important information across, trying to maximise the preciously short appointment time as any future appointments or help depend on this one achieving its aim….

I therefore can appear surprised, distracted and anxious – but that’s because I’m in the room with a stranger and as a mother to that stranger I’m having to make it up as I go along.  I’m thrown and I don’t know what is right.  If my ‘parenting’ in that moment is unsuccessful it’s because it’s all new to me and I’m feeling around trying to find what works.  It doesn’t mean I am a bad parent.  If I contradict my daughter it’s because I’m telling the truth and am not being dismissive or neurotic.

So to the practitioner I say;

If I speak to my daughter in a certain way, say certain words, try a certain strategy it’s because it HAS worked before – that’s why I look surprised and flounder when it doesn’t work in front of you.

I feel the full weight of your judgement on me.  I’ve been blamed too often for my daughter’s hidden disability so yes I am anxious when familiar territory abandons and fails me.

So please understand that if I appear anxious it’s as a RESULT of my daughter’s erratic behaviour and not as you so readily presume, the cause.

Anxiety vs Avoidance – As a parent how do I know I’ve got the balance right?

The burning question I always have as a mum is how do I know I’ve got it right?  How do I know my decision is the right one?

My daughter’s autism manifests in many ways but one of the main ways is anxiety.  She has enormous trouble decoding the world, processing the information and coping with change.

She can’t explain herself and self advocate when she is experiencing stress and it’s always with hindsight that the facts come out.  While she is experiencing stress she is in survival mode and doesn’t even recognise she is stressed until the stress stops.

This goes some way to explain how she holds it together at school and appears ‘fine’ and sometimes appears better than fine, she’ll be laughing and engaging but still comes home to fall apart.

This week has been so hard for her with staff illness and absence meaning unexpected substitute teachers.  Her week is not going to plan, it’s unfamiliar and the level of stress it causes impacts on everything.  She came home from school last night subdued and tense.  She was pale and clammy and being winter I suspected a bug, I took her temperature and it was normal.  She was not unwell, she is just exhausted and drained from the emotional toll of all the changes.  The evening was erratic, she was vacillating between tearful and angry, she was refusing school the next day and  refused to go to ballet that evening.

I decided to allow her not to go to ballet this time.  I usually push her outside of her comfort zones and insist she sticks to her commitments.  It was her choice to take up ballet and she’s really good at it, she has just achieved a high merit in her exam and was really (rightly) proud of herself. This term every week she’s tried to get out of going to class and I’ve not caved once.  It’s exhausting always battling and cajoling but it’s the right thing to do and furthermore we’ve paid for it, so she’s going!  She can never explain why she doesn’t want to go and I can’t get to the bottom of it so, commit she must.

After all the school changes this week however I felt that rather than fight that battle I’d keep her home and let her rest and hopefully increase the chance of her managing school the next day.

All evening her stomach was churning with anxiety about the following day at school.  A totally new teacher she has never met is taking them and this is all too new.  There are too many unknowns that haven’t been planned, prepared and practised.  It’s overwhelming for her.

She woke up this morning claiming illness.  It’s really avoidance.

My main aim is to get her to

  1. Correctly identify what she is feeling
  2. Correctly describe/label what she is feeling/experiencing

We have spent a lot of time talking about ‘the little boy who cried wolf’ over the years, we’ve read the book more times than I can count.  On an academic level she understands the concept but she is not equipped to manage putting it into practice.  So every time she experiences anxiety she claims illness.

She is eight years old.  Now is my time to teach her to recognise what her body is telling her.  To teach her how to self advocate for that.  To teach her that she will be believed when she says she is  feeling anxious and that it’s nothing to be ‘embarrassed’ about [her words].  It’s our chance to prove to her that she will be respected for the recognising her feelings and limits.  It’s our chance to nurture her, to build her into a strong person who can identify and manage her body’s signals.

We also have to be careful not to be manipulated every time she wants to get out of doing something for any reason other than her crippling anxiety.  She’s very bright, she’d make the connection and employ the tactic if she felt it would work.

So, as a mum, how do I know when to push her and when to nurture her?

Mental ill health in young people is on the rise.  The amount of pressure our children are under is at an all-time high and is in some cases damaging their psyches.  The amount of help available is minimal as the NHS mental health service is at crisis point.  Prevention is better than cure, especially when ‘cure’ relies on patchy service availability.

Autistic girls are a particularly vulnerable group and I’m very conscious of that.

Am I harming her or helping her by pushing her out of her comfort zone, by making her go to school?

What is the right answer?

I’m so proud of her, that today, with my and the school’s help she managed to go in.  I managed to tread the fine line of ‘coaxing without demanding’ well enough to get her to school and then with their help through the door, they are managing her transition into and through this tricky day.

Are they doing it right? None of us truly know.  Are they doing their best? Absolutely.

Am I worried that my daughter is suppressing her anxiety to meet expectations? Yes, very.

Do I feel conflicted about this? Yes, incredibly so.

Suppressing her anxiety is different from coping with it.  Suppressing it is quashing it, ignoring it and denying it which leaves it simmering deep down causing damage and delayed presentation.  Coping means addressing it, solving it, learning from it and leaving it behind.  It’s a fine line to find the balance.  How do I know I’m getting it right?

Change = Anxiety = Implosion

h2au-anxiety-implosionLittle Miss H is having a very tricky week (And it’s only Tuesday!)
We’ve had to miss ballet this evening as a result and she’s not coping brilliantly at all. She’s currently decompressing with her “tool kit” of sensory toys. She’s been incredibly erratic changing from argumentative to tearful to quietly angry and I’m exhausted, so goodness only knows how she must feel. It’s different from a full blown explosive, aggressive melt down, it’s more an implosion of anxiety.

It is all because her teacher and the usual substitute both of whom she knows well and trusts, are both off ill. As a result both yesterday and today she has unexpectedly had a different teacher. It’s someone she knows (and likes) at the school but hasn’t been taught by before. This change has caused her immense anxiety and this prolonged build up has culminated in this implosion. It’s involuntary and she can’t control it. Yes it seems irrational to me, does that frustrate me? Absolutely. Does that matter? No. I can not let my frustration inform my reaction. It does of course because I am human, but I do my best to count to twenty and mutter under my breath behind the cupboard door to enable me to be patient with her. I vacillate between calm and sympathetic to irritated and impatient. Which in turn leads to me feeling guilty and defensive. You see I am tired, sleep deprived and poorly so this reaction and the resulting unpredictable behaviour from her have me like a cat on a hot tin roof. Furthermore some of her calming toys are noisy and with my headache they are driving me nuts!!! Obviously I can’t react so here I am, telling you lot about it, hoping you won’t think I’m horrid for not just being a bundle of sympathy for my blessed child. Obviously I’m sympathetic but I’m nearing the end of a frayed bundle of nerves I think…

To really add sprinkles to the cherry on top, the teacher she currently has needs non-contact time tomorrow so it means a further teacher is coming in. It is a teacher she has heard of but doesn’t know. She doesn’t even know her name and is beyond worried about it. This has tipped the balance and she now can’t cope with it all. She’s anxious about every aspect from uncontrollable variables to things that just wouldn’t cross my mind. I’m so impressed with her that she is now able to (partially) vocalise her concerns but she doesn’t at school and it all comes out at home.

I’m not convinced I’ll get her to school tomorrow but it’s bedtime now and I’m not even sure she’ll get much sleep, so we will cross the school ‘bridge’ tomorrow…..

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What Autistic Adults have Taught me about Parenting my Daughter

h2au-q-to-adultsWhat Autistic Adults have taught me about Parenting my Daughter

As a parent to an 8 year old girl we have our share of frustration, cross words and clashes.  We also have a strong bond, a close relationship and enjoy each other’s company.  Obviously I love her more than words can say and am beyond proud of her (yeah, yeah – blah, blah, blah!)

I have noticed however that traditional parenting techniques are not always successful with her and whilst being ‘strong willed’ is one of many positive traits she seems to have inherited from me, there is more to it!  Another factor that adds a different dynamic to the relationship is that I am Neurotypical and she is autistic.  I am conscious that I don’t always respond to her the way she needs.

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In an effort to gain some insight into what I could do to improve my parenting of her, I turned to Autistic adults on Facebook and asked ‘what is one thing you wish your parents had known when you were growing up?’  This is what I learnt.

  1. To Recognise Her

Acknowledging she is Autistic is the first and most powerful message that came across.  To accept her for who she really is.  “The chances are she already knows she’s different” so giving it a name and recognising it is empowering for her.  Acknowledging her for who she is is vital.

Calling it something isn’t enough though – it is about recognising what it means. It is about recognising that;

  • She will be naïve, trusting and potentially vulnerable and that she will need love and protection even though she may not ask for it and even if it appears like she doesn’t
  • Autistic inertia* is a real thing, she is not being lazy, procrastination stems from a “significant emotional barrier” and to recognise that she will be struggling
  • She will need recovery time
  • “some kids need help making friends, some just don’t care”, she may not want to socialise and that’s OK, but if she does she will need to be guided
  • Her perception of reality will be different to other children’s/mine
  • Her sensory needs and desires and her routine needs will be different from mine
  • She is externally motivated, visual instruction and physical reward will be more effective than verbal instruction or verbal praise
  • With confidence she will work hard and achieve great things
  • She is different and not to “pressure her to be normal”

Something else that came up was “don’t be embarrassed to have a child that is different” – whether we mean to or not I think sometimes as parents we change our approach based on what setting we are in and that is often driven by the fear of what others will think.  This exercise has taught me to try not to care what others think!  (I will add that I have never been and will never be embarrassed by having a child that is different).

2.  To Respect that her struggles are legitimate and real. Respect that;

  • Transitioning IS hard, and to allow for that by giving enough time to switch activities
  • Crying is her way of saying she needs something but doesn’t have the words to explain, no matter her age
  • Interpreting things can be hard for her, even praise – she may not be able to tell if I am sincere, so I need to incorporate behaviours as well as words to show her what I mean. Model rather than order if you will.
  • She NEEDS alone time – that she needs and wants time in her room and not to force her to socialise
  • Respect her sensory issues – her reactions are involuntary. For example if she gags at food or a smell, it is involuntary not just her ‘being dramatic’ or ‘difficult’

One woman explained that she wanted her caretakers to understand that she wasn’t “highly strung” as they called her, in fact she was “baffled by life and society itself”.  Truly humbling to hear those words when you are neuro-typical, how much we take for granted.

3. To Teach her everything. Not to make assumptions that she will just ‘pick things up’.

  • To realise that she will be doing her best but that she will still want my help and guidance even though she may not ask for it and in the case of my daughter may actively fight against it!
  • She will need to be taught life skills
  • She will need to be taught HOW to do everything from wiping a table effectively to how to tidy up and organise herself
  • To break down every activity to smaller steps to teach her how they connect to each other – a bit like you break down dance moves to learn an entire routine!
  • To recognise that she is externally motivated so physical rewards are likely to be more effective than verbal praise alone
  • That I need to spell out my expectations and explain everything because she is not a ‘mind reader’
  • That if she appears ‘highly strung’ she is probably struggling to understand something
  • Avoid using sarcasm, rhetoric or hyperbole
  • To encourage and nurture what SHE is good at ‘not what other girls her age are doing’
  • Encourage her to take responsibility
  • Show her that she is valuable and perfect as she is and she is “not wrong to be different”

4. To be Available to her

  • Show her my unflinching love and support
  • To be patient and allow her time to fully process information
  • forgiving
  • Understand that when she is questioning me/things she isn’t being obstinate, she just needs answers
  • Show her I’m listening and really hearing her
  • To tell her I am sorry when I get it wrong

5. To continue Learning together as we go. I need to learn at each stage;

  • That she doesn’t need to be forced into Neurotypical behaviours
  • Not to compare her to her peers
  • Angry outbursts will be because I haven’t accounted for the steps above
  • Anxiety is a bully that overwhelms her and one that she is still learning to control
  • Her facial expressions do NOT match her inner emotions
  • I must watch, listen and learn who she is and not make assumptions
  • Find ways to deal with my frustration – in the words of one woman “I wasn’t trying to destroy my parents happiness”

 

Some of this, we as a family already know and do, we are fundamentally on the right track and mindful of doing our best.  The rest of this we need to remind ourselves and work harder on.  Much harder!

Having neurodiversity in a family is fabulous and challenging in equal measure for all of us. We won’t get it right all of the time but having the intention and motivation to at least try our best has to be good enough.  Then we can trust in the fact that ultimately her happiness will come from being her true self.

With thanks to the Autistic Women’s Association and other facebook users who answered the question!

*Autistic Inertia is basically a state of wanting or needing to do something, but being completely unable to do it, almost like a paralysis. (https://nolongerinabox.wordpress.com/2013/03/12/autistic-inertia/)

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A darker side of Autism

** trigger warning**

Below is a post from my personal Facebook timeline from two years ago.  I posted it not long after we’d moved up here to Scotland.

Those of you who have read past posts may be aware that we have had a struggle getting support since our move to Scotland.  That despite a firm diagnosis of Autism some ‘professionals’ doubted Little Miss H’s diagnosis.  They even accused me of making it all up.  We have been accused of bad parenting and emotional abuse; it was claimed by some that getting her diagnosed was emotionally abusive! (I’ll just leave that there for the moment but I have a separate post in mind about that for another day).

The fact that those accusations happened at all is beyond belief but when I look back at behaviours and manifestations that Little Miss H has endured and suffered through (and still does) it makes my blood boil that there is so little compassion (and support) for such a little girl who deserves to be acknowledged for who she is, specifically as an Autistic little girl.

It breaks my heart that a child would feel such anxiety that she’d pick her skin to the point it bleeds.  She has done it since she was very young but it had just dawned on me that what we were dealing with had a name.  That name is ‘self-harm’.  Obvious with hindsight I know.   At the time though it hit me like a sledge hammer, she’d been doing it since she was 2 or 3 and at the time of the post she was 6.  The impact this had on me was huge.  The realisation that this was a very real aspect of her autism felt overwhelmingly suffocating.

The fact that she felt anything strongly enough to drive her to the point of hurting herself made me feel like I’d let her down.  The panic I felt that I hadn’t previously done more to fix it or support her through this behaviour left me feeling substandard.  The fact I had ‘allowed’ her to feel so bad broke me inside.

Obviously we had tried many things to help her not pick her skin.  I thought it was partly sensory seeking behaviour and we tried many distractions and redirections.  I did notice it got worse with anxiety and we tried to deal with the anxiety itself rather than the behaviour.  It’s not like we had ignored it, been blind to it or not been pro-active about trying to help her.  It’s natural that I felt sad but why did I feel so bad, so guilty?

Part of my reaction was to force myself to acknowledge it out loud.  Part of my reaction was to share in case it helped anyone else and part of me wanted to educate others about the generality of this, so often unspoken, part of autism.  Part of me though just wanted to say ‘my poor baby is struggling, I find that hard and life isn’t perfect’.

So I shared on my personal time line.

I got so much support from many friends but was criticised by some too for talking about it so publicly.  How very British, to suggest I keep it behind closed doors.  I felt ashamed that I had posted about it when I was criticised.

I also realised then that Facebook served as more that a social media outlet, it was part of my support network.  I had moved to a new place where I didn’t really know anyone, was struggling to get professional support in place for all our needs.  Facebook was a world where people ‘got it’, so I resolved not to feel shame and to embrace the reality of our life.  I need the support network my ‘invisible’ friends give me.  (That’s you lot by the way – thank you!)

More though, telling our story may help someone and if we can make a difference in one person’s life, make one person feel less alone, then it’s all been for something.

So to those that find it triggering I’m truly sorry, please don’t read anymore and come back for the fun stuff elsewhere on my FB page later – hugs and strength to you.

To those who just don’t want to know scroll on by.

For those of you who want to learn, understand and support – the original post is below.

“So Little Miss H is a self harmer.  A horrible statement to make as a mother – I feel like I have failed her.  Her Autism causes her such anxiety that she hurts herself and makes herself bleed.  She is 6.  This in itself is sad enough but what breaks my heart is she now seems to realise that it’s not “normal” behaviour so she is now hiding it and lying about it. This further masks the problem that causes her to do this in the first place making it even harder to identify the cause and help her.
It’s no wonder that the average age for diagnosis of Autism in girls is 12, the professionals involved with Little Miss H still can’t always readily see her Autism manifesting itself and if she’s now hiding some of the most overt tell-tale signs how on earth am I going to get her the help she needs?
I feel like I am at the bottom of a hill….every time I try climbing the hill it turns out to be a volcano, erupts, pushes me back down and just grows into a bigger hill….. sometimes life is a bit of struggle here”

I’m thrilled to say that we are managing this aspect really well at the moment – she still picks when anxious but her self-awareness as she matures is helping us find other, healthier coping mechanisms/management strategies and her scars are fading.

We still don’t have support up here but I have learned that I am enough.  She needs me, I am here and I always have and will do my best for her.

To my brave, strong, amazing Little Miss, you are safe and I love you.  You will never have to walk through life alone.  I am so proud of you, every single incy wincy bit of you.  Thank you for being you, Mummy xox

Whatever Works!

‘Whatever works’ is my parenting philosophy.  In fact I’d say it’s largely my philosophy to life… now!

Parenting Little Miss H has taught me that.

I’m adaptable, can fly by the seat of my pants and I make it up as I go along!

I’m instinctive and I am intuitive.

I’m dynamic and a do-er.  I’m more action than talk and I am not a ‘worrier’.  That is not to say I don’t care, I just don’t waste my precious little energy on ‘worrying’.  I act on what needs action and deal with facts rather than what-ifs.

Again that is not to say I don’t address future possible scenarios. Of course I do, I just don’t dwell on them.

I try to listen to my inner voice.

Drowning out all the external ‘noise’ can be jolly hard. Especially in this modern age of parenting where there is a book for everything, an expert on everything and too many people who feel entitled to an opinion about everything and everyone else’s lives.  I feel listening to our instinct is being culturally drilled out of us, parenting is prescriptive now and in Scotland at least, if the current government had its way, it would be state led too.

On the whole though I succeed on hearing my inner voice even if there is the odd occasion when I don’t act on it.

These traits have led me to be quite creative in my approach to parenting.  I’ve had to be.  Autism has made me react rather than prescribe.

Don’t get me wrong I am very traditional in many ways and please don’t mistake creative for airy fairy and wishy washy.  Little Miss H needs firm boundaries and assurances, there is no room for vagary in my parenting of her.

Little Miss H says I’m strict, I think her friends may think I am too.  I have high expectations of myself and of my girls.  Realistic but high.  After all, as the saying goes, if you aim for the moon and miss, you are still amongst the stars.

I stretch them and I support them stepping out of their comfort zones.  We have a hard work ethic.  We have needed it with all the therapy we have had to incorporate into our lives.  We are results driven and ambitious.  That, I believe is why Tiny Miss H can walk despite her prognosis.

Mr H would say to me “you’re Scottish, you’re feisty”, I say that’s no bad thing!

Parenting Little Miss H has taught me that traditional parenting or what’s called ‘parenting as normal’ (rewards/sanctions) is often not suitable for children on the autistic spectrum.  Their impaired social imagination means that they can’t envisage the day ahead for example the way a neuro typical (NT) brain automatically does.  This means that a feeling of being lost and confused drives their behaviour in pursuit of predictability – safety.

Autistic children have to be explicitly taught many things that are just picked up naturally by an NT developing brain, one example is personal space, an unwritten social rule that NTs ‘just get’.

This explicit translating the world and teaching of unspoken rules not only takes more parenting  and takes more out of you, it takes more out of them as a child.  Every minute of every day, autistic children have to work at understanding the world around them.  They can’t just ‘be’.   Little Miss can’t just be an 8 year old girl, she has to work at being an 8 year old girl, consciously thinking about what to do next, translating each scene she is in to figure out what she is expected to do next. Like acting a part, playing a role but without a script or screenplay.

Autism is context blind which means that she can’t generalise her experiences so each situation is a new situation for her.  She is building a bank of experiences like a library to call upon next time, but each one is only useful in the future if everything in the new situation is the same as that in the banked experience.  An NT child could pull up a mental picture and expectation of what the day would entail from that bank if we said we are going to a park, whether they had been to that specific park or not.  The reality would be close enough to the mental picture they imagine in that it would have play equipment, some grass etc.  Little Miss H can’t pull up that mental image as a generality.  She needs the exact input of what that park looks like.  What play equipment, what the slide looks like (colour, number of steps etc), how many swings there are, the layout etc etc.  Without this exact information the anticipation of the event is very stressful for her.  The reality once you get there is often more successful as she feels safe again.  This is the crux of the issue with transitions in autistic children.

Imagine being told you are going somewhere.  No details.  You just have to follow blindly and have faith with zero information about what awaits you.  Imagine then arriving somewhere you’d never been before and you didn’t know what you were supposed to do or how long you were going to be there.  You’d feel pretty uneasy too.

Well that uncertainty is what drives much of the behaviour in autistic children.   Add in the sensory element and you can see where problems arise.

This is why often the promise of a reward falls on deaf ears as they can’t generally visualise it anyway – even something positive causes anxiety so it isn’t a motivator.

The threat of a sanction eg confiscating screen time again isn’t something they are projecting forward to and imagining being without so behaviour modification is not achieved.

Every day I have to modify my interaction and parenting accordingly and this takes conscious effort and I can’t just react, I can’t just ‘be’.   I have to consciously think about everything we as NTs, normally take for granted.  I have to work at every day – translating it and explaining it, planning for it, pre-empting it and teaching it.

This process (of learning that many traditional aspects of ‘parenting as normal’ aren’t suitable) has resulted in us doing things our way and that’s OK.  We’ve had to make it up as we went along.  Each situation presenting a new set of criteria to figure out.  Trying to adapt the environment or situation sometimes is more successful than trying to address the behaviour itself.  Creative approaches to managing behaviour and redirections often take place instead of rationalising and using the behaviour as a lesson.  It might look like we are doing it ‘wrong’ but for us it’s right.

We might not reprimand when someone looking in feels we should.  We might not manage behaviour in a way that people think we should.  We might seem to let her get away with stuff.  We might do our thing, our way.  We might appear unnecessarily strict.  We might appear to be a kill joy by stopping an activity seemingly prematurely, we might not let her join in stuff that she seems (at that moment) desperate to do.  We might seem to be forcing her to do stuff that she seemingly doesn’t want to do.  We might appear to contradict ourselves.  We might appear to be ‘over rewarding’.  We might appear to be oblivious to stuff.

There are reasons behind everything we do.  A lot of work has gone into the way we do things.  There are days of trying every other way.  There are nights of sleeplessness from where we have got it very wrong, there are bruises from making a mess of it and there are bruises from doing it right.  There are oceans of tears from unsuccessfully doing it other ways.  There are rays of sunshine from the days it all works.

We do whatever works and that’s OK.