Wednesday, 16 November 2016


One of the things that I've read about autism, which are completely at odds with PDA boy's behaviour, is trust.

It is well documented that autistic people tend to be overly trusting of others.

For my son, this could not be further from the truth, and I wonder if this is a PDA thing, or whether my boy has taught himself not to trust.

There are several occasions where PDA boy's sense of trust has been shaped. Over the years he has become distrustful of all teachers and professionals that he comes into contact with, trust and respect must be won.

One of these occasions was when he was 7. PDA boy was introduced to The Incredible 5 Point Scale.
In order for him to not feel different, his whole class were involved in the exercise, drawing little faces ranging from happy to Raaaaargh!

When I picked him up that afternoon, there was a change in PDA boy, he looked relaxed, relieved and happy. He told me that he now had a way of showing people how he felt in school, as he was unable to show any physical signs. As he was telling me about it, his teacher called me in to the classroom to discuss the session, so we could transfer the 5 point scale to using it at home too.

She encouraged PDA boy to tell me about the scale, which he did, telling me that 1 meant he was relaxed and happy, 2 was feeling a little uncomfortable but generally ok, 3 was stressed and needed some help, 4 was very stressed with meltdown inevitable, 5 was meltdown.

The teacher asked how he felt during the school day. PDA boy eloquently and trustingly told her that he always felt at least 3, and often 4 (which I can confirm was true as most days he would,barely reach the car before he was in meltdown). The teacher gaped at him in disbelief and said....

"Well, that's not true! I see you every day and you look fine!"

At that, the relief was wiped off my little boy's face. He became guarded, wary of his teacher. After the meltdown that this caused, he vowed never to tell or show a teacher how he felt ever again, his trust in all of them was lost thanks to that one teacher.

The second main occasion was reserved for the pros.

This was a two pronged fail.

We had a CAMHS appointment lined up. PDA boy was prepared for three weeks about what to expect. He was unwilling, but he didn't run away, he didn't meltdown, so we were good to go. We arrived at the appointment ten minutes early, to allow us to find a parking spot. As I pulled up the handbrake and turned off the car, my mobile rang. It was CAMHS, cancelling the appointment due to the therapist being ill.

This is one of those unavoidable things, but to PDA boy, this was the end of the world, and even now, two or three years later, he is still wary of any arranged appointment in case it's cancelled at the last minute.

He then refused the next two appointments, as he saw no point in winding himself up in order to be let down, and I was disappointed in CAMHS' reaction to this refusal, as if I had somehow allowed and encouraged him to be naughty, rather than the sheer terror that meant he was physically unable to attend.

The third appointment however, he managed to go (with the promise of choosing a toy after the appointment). Whilst there, he (predictably) masked expertly, but he did open up a bit about "going crazy" at home, feeling awful at school and not being able to show it, but he did draw the line about mentioning his regular wishes to kill himself, complete with drawings and demonstrations.

Whilst he didn't open up much, the fact that he did at all was huge, something that I spoke to the therapist later about, and asked her to make sure that his words were believed and acted on, or he would, yet again, lose trust in them. She agreed, but then went on to advise that we stop treating him like an autistic child, and that we bring our discipline methods in line with school's, as he was clearly much happier in school than at home.

So that was that, PDA boy has now lost all trust in CAMHS, because they didn't listen to him, and because they didn't listen to us, his parents, his advocates.

We occasionally see little glimmers of hope, the non-teaching head of year at secondary who keeps an eye open for him but doesn't bring attention to him, is slowly being accepted as a trusted person, ditto the SENCO.

We have to be aware that any relationship outside of close family must be handled slowly and very carefully, any false move is almost certainly irreparable, which is tricky for others to understand.

We hope that in the future PDA boy can learn to build up trust with more people, and understand that people make mistakes which can be fixed.

No comments:

Post a Comment