The Invisible Barrier

“I’ve kind of spent my whole life in this kind of observational role, even when I’m an active participant.”

Little Black Duck (adult with PDA) – taken from the book PDA by PDA’ers

An important trait, often missing from our current thinking on Autism Spectrum Disorders (ASD), is the behaviour of ‘observing.’

Studying other individuals and watching from afar in social situations, often until every last detail has been absorbed, is a form of learning for many people on the spectrum.

My child uses the art of observation to understand, imagine and predict what will happen in a world that she finds very uncertain – it gives her a sense of control.

Although this feature may be more prevalent in girls, it can also be seen in boys too.

Contrary to what most people believe, it is not only specific to Pathological Demand Avoidance (link to a brief outline of PDA can be found here), but is also seen in many relatable conditions.

My daughter, who is now aged seven, has always been an ‘impassive spectator’ throughout her life – a trait so subtle that I didn’t even notice it was there.

You see, she desperately wants to be able to join in but for some reason she can’t.

It acts like an invisible barrier and prevents her from engaging in absolutely everything; simple tasks like eating, drinking and using the toilet to fun stuff she begs to do like park trips, eating out and going to school.

It is extremely frustrating when your brain stops you doing things you really want to do.

Once the fear of the demand is in place it’s virtually impossible to find a way to release it; the anxiety often reappears from the memory of having it in the first place.

A while ago I found this image and it was taken in a time way before I ever knew she had this behaviour profile:

My daughter (aged 2) observing her cousins playing a ball game.

This photo, unbeknownst to me when taking it, illustrates the profile better than any words you could use.

We were away at the time on holiday with other children and they were playing with a ball.

I asked her if she wanted to come and play and there was no response – almost as if she hadn’t heard me at all.

I said it again and it felt like she was ignoring me, yet she seemed frozen to the spot.

I carried on talking and I offered my hand to take her, again no further communication was made on her part.

Then she silently went to the fence and peaked through the slats – I took a photo of her spectating from afar.

We stayed like this for quite some time until eventually she gradually moved herself forwards near to the action.

Again, I held out my hand without speaking this time, and she took it.  We began to slowly participate together with the rest of the children.

Even without my ‘insider knowledge’ of PDA I had actually learnt a technique to parent her in a unique way that was working for us – that was until she entered school and the demands became too much.

No matter how much you try you can’t force a child to engage.

If I could go into every school I would love to show them this photographic analogy; of the child who wants to join in but can’t.

So often, staff working in school settings assume that children choose to not comply.

I believe it should be a prerequisite for teacher training modules to study the work of Ross Greene and his ideas on The Explosive Child – a quick YouTube video like this one will give you a sense of his philosophy.

Then they may change the rhetoric in schools away from children do well if they want to, but rather children do well if they can.

So how do teachers find ways to make these challenging kids comply?

They could try shouting and punishing the child – this was probably one of the first experiences my daughter had in a school environment and it only led to further anxiety, eventually leading to exclusions and school refusals.

Next, they could try dangling a reward in front of the child and coerce them into submission.  Again, this style of working may be successful to kids who already can do what is being asked of them but won’t be successful for those who can’t, arguably causing even further angst.

Last resort now, the child is definitely not complying, should we drag and force them by the hand?  It may seem a pointless rhetorical question but you would be surprised how many think this option is how you get the child to do what you want.

But for all those family, friends or professionals out there who want to give you advice or a solution to your problems – they have never experienced what it is like to have a child who is hard-wired to default daily demands.

The barrier may be invisible but it certainly is magnifying in strength.

You can’t make someone go to the toilet. You can’t force them to eat or drink.  You will never be able to make someone do something against their will.

And likewise a teacher can’t physically make a child engage in an activity, no matter how strict they become in their teaching style, it will always result in an even further explosive child.

There is one simple solution that many people overlook and this is useful to any educational provision working with challenging students.

What if you try to understand what it is that is preventing them from engaging and attempt, collaboratively, to take away that barrier?

It takes a long while to alter your mindset and the quicker you switch to finding ways to help the child feel like they can do what is being asked of them, the more fruitful will be the result.

I had to get it wrong quite a few times as a parent until I could find this solution. The amount of time I ashamedly spent punishing every moment that she was non-compliant. The more she bucked the more boundaries I set in place and the more like ‘Super Nanny’ I became.

But did it work?  Of course not.  My child just became even more explosive and challenging – eventually regressing in her ability to learn and socially integrate.

Now I understand her need to spectate and I try to give her the time she needs.  I no longer see the need to make her compliant, but instead for adults to be the mentors in her life guiding her along positively.

I had to understand the invisible barrier that was preventing her from doing well if she could do.

I hope that schools can adapt their philosophies so that they can improve the chances of their most challenging pupils – once those barriers are down there is every chance of success.

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8 responses to “The Invisible Barrier”

  1. Absolutely fantastic blog! So many schools need tires done this and I have been guilty of this myself parenting my children. I see so much if my own daughter in your beautiful photograph.

    1. Ahh thank you Miriam, that’s very sweet – I was equally as touched reading your post about two schools and just one you (it really hit a nerve with me too!) xx

  2. Great post, and I too love Ross Greene’s way of explaining about how “kids do well if they can”.
    Also, that you mention going to the toilet struck a chord with me. I’m not diagnosed with anything myself, but something which I had major problems with as a child was going to the toilet in other peoples company. You know how girls like to go into the toilets as a whole group, giggling together and chatting, doing their hair etc.? Well, I realised I couldn’t go for a wee while there were others around, even if they were my best friends. It wasn’t that I was feeling embarrassed to do it, it was just physically impossible. And thinking back to that, it helps me better understand when a person says they CAN’T, even if it may look as if they just won’t.
    I hope your girl meets an increasing amount of understanding as people around her learn more about this xx

    1. I also had the same problem too and no matter how much I tried to force myself to go to the toilet it just wouldnt come. I think it’s so important for us to all understand the can’t being in the process. I just wish schools, family and friends could understand that part too!! x

      1. You’re the first one I know who’s had that same problem, and yes, it was IMPOSSIBLE.
        It’s hard when others don’t understand, both the ‘professionals’ (including school SENCO etc) who you really feel should know better, and family who you’d think would care more and be more understanding and forgiving. I wish that more people could just ACCEPT, even if they can’t fully understand xx

      2. Exactly – very well said!! Thank you for the share too earlier, I’m very grateful xx

  3. Brilliantly expressed, all rings true with us. So important that we try and get others to see that they can, and should, think outside the box!

    1. Thank you xx

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