“We took a wrong turn, then another wrong turn and then we ended up in a field.”
Peter was asked by his Year 4 class teacher why he was 20 minutes late for school. It was the end of term, he was exhausted and I had let him sleep in. The school knew this. I had told them but they decided to ask Peter why he was 20 minutes late, regardless.
Peter told me in the car, on the way home, about being questioned and how he had answered his teacher. I asked what happened next. “[the headteacher] came and asked me the same question..” “Oh?” I replied. He continued: “I told [the HT] the same as [the class teacher]:”, “We took a wrong turn, then another wrong turn and then we ended up in a field”.
I didn’t realise at the time why Peter and said these things and now I feel quite guilty for laughing at this story as it unfolded on the way home. It was a little while later that Rosie and Jo’s mum explained to me the likely reason, and then everything fell into place.
You see, Peter’s vocabulary might be on the 95th percentile but his Asperger’s means that social communication is very, very, difficult. Communication is so much more than knowing a load of words. He tries to work out what the other person is looking for in a conversation and often just doesn’t know what to say or how to respond.
Being put on the spot with a question that he wasn’t expecting, at a time he wasn’t expecting conversation and with a person that was talking to him about a topic that is not usually covered between the two of them, was just too much.
As the years have gone on he has become more worried about conversations because he thinks he will not know how to respond or even if his response will be considered appropriate, hurtful, wrong or embarrassing.
So when he was put on the spot in the middle of a lesson, asked about something that happened at home a few hours previously, and not really knowing the answer, he had panicked. He said the first thing that he thought of in the hope that it might make this worrying ‘interrogation’ stop. Since the teacher responded and then walked off, (relieving the stress) and now worried that it would look like a lie if he responded differently to the headteacher, he recited the same lines. On the way home from school he was still confused. He still didn’t know what would have been the right response and as such it is the first thing he told me about.
With hindsight I can see that there have been other similar situations and that his responses could be chosen to indicate that he was ‘fine’. Here is another example:
When Peter was in Year 3 a school trip was looming. He was worried about a few things and so I let the teacher know. His notes record that the class teaceher had asked him what he was worried about and he had said ‘nothing’ (the implication being that I was wrong/making it up etc). Being put on the spot and being questioned like this was just too much for Peter. By saying ‘nothing’ or ‘I am fine’ the immediate stress of the conversation goes away.
So, I think that some of the reasons that our children will they say they are fine, when they are not can include:
- They are confused by the feelings they have and can’t contribute them to a definitive cause.
- They don’t have the language to explain how they feel.
- The fear that they may not be believed is too great.
- Previous experiences of having having their worries belittled by adults.
- Social interactions are just too hard, especially when rushed, especially when out of context, especially when you are worried about getting the answer ‘wrong’. It is easier just to say ‘I’m fine’, then all the pain of trying to explain, of having a conversation, will just go away.
So, when school writes to the ASD assessment team and say the child is OK, when they are not, this may be just one small reason why.
I have previously written about the dangers of relying too heavily on the views of professionals who are unqualified to see, interpret, understand or comment on complex neurodevelopmental issues here.
We are currently in a situation where, unless a child is causing disruption in the classroom, every sector benefits from unconsciously colluding to agree that a child does not need assessment, a diagnosis or support. There are no immediate incentives anywhere, as far as I can see, that would encourage the (kind and skilled) Year 3 teacher to develop a relationship with Peter and to spend the time with him so that the necessary skills, time and bond could have enabled her to elicit a full answer from him. She was lovely – the potential was all there.
So by the assessment teams asking teachers to identify signs of anxiety or of communication difficulties in a child who freezes and has aced ‘blending in/camouflaging’ they will get the answer they want. The child is OK. He doesn’t meet the threshold for assessment.
Handy. For now. Until they break.
Following publication of this post some useful points have been made which I will do my best to summarise here.
First and foremost, of course, just like the rest of us, children with ASD may cut short enquiries as to how they are for just the same reasons as any child or adult, as Matthew Smith outlined:
And don’t forget that they may say “nothing/I’m fine” for the same reasons as other people:
1. They’re fine
2. The matter isn’t one they want to discuss right now
3. The matter isn’t one they want to discuss with the person asking
4. The matter isn’t one they want to discuss, full stop.
A twitter conversation also pointed to the fact that many people ask “How are you?” when they don’t really want to know the answer.
Most of us understand that this is common in conversation. I guess that if children with ASD have learned that this is a social rule (don’t answer honestly, just smile and say “Fine thank you”) then how are they to know that when a professional asks (and lacks the skills to explore in a more skilled manner) that they are expected to start to think about and process what might not be OK?
Others have offered examples of how this situation may play out for their children:
@leoniedelt describes how it can feel not to be able to express yourself. “So, back to me as a grown woman with ASD – I say I’m “fine” when I don’t have the words, the reserves, the capacity to explain why I’m not. When I was younger, my vocabulary grew but as i get older it’s shrinking, and under pressure, I just don’t have words, I can’t find them — and that is extremely frustrating and makes me want to throw things when I can’t express myself well or in doing so, cause offense etc”
“It has also been helpful to hear how “there’s a huge pressure to be unseen, to not be noticed, to not be different, Esp as a teen. If you fade into the background, you aren’t ever found out for the impostor that you are – different, like an alien, never quite “right” -If you study the people around you, memorise, emulate, you can try to blend in, copy, assimilate. It almost works, most of the time.”
An autistic mum to an autistic teen, who is far better placed to talk about this than me, has written to describe how this feels first hand:
Struggling to ask for help, being unable to express our needs for support and adjustments, and even accepting help and support when offered, can be extremely difficult and often debilitating for many autistic people. Recognising a need and then finding a way to express it to another person requires a complex set of cognitive, emotional and communication skills.
Whatever your viewpoint on this, reaching a decision that a child is typically developing and doesn’t warrant a full assessment because:
- a teacher who is not trained to elicit subtle signs of communication difficulties doesn’t see any, AND
- the child they are asking has every reason not to describe them
cannot be considered safe practice.
To see the original sources of these they can be found on the itmustbemum’s twitter pages and within the comments attached below.
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