This week we finally received our formal letter confirming L's diagnosis on the Autistic Spectrum.
To say it's been a long time coming is an understatement and whilst I don't doubt the care that everyone has taken over the process, and of course the need to ensure it is right, there is clearly a problem with the beaurocratic process behind those giving the care which can be at best frustrating to parents, and at worst damaging to a child's education, welfare and wellbeing.
So, following on from my blog some time ago on our initial suspicions with L and the incidents which triggered our initial referral, I thought I would go through the rest of the process we went through.
Following L's week long exclusion from school as a result of a scratching incident - a reaction which seemed wholly disproportionate and out of the blue and which garnererd a strongly worded letter to the School Governors to which we yet await a reply - we were referred to a child specialist GP.
This was some 2 and a half years ago, around April 2010.
The GP we met, following an extensive search for an appointment with her, was very kind and after we described L's behaviour and following a short assessment of him herself, she asked us to complete a questionnaire. This was also sent to the school in order for them to submit their responses as well.
It took almost 6 months before we got to see her again - mostly due to delays from the school in replying to the questionnaire. In their defence, they did say they completed it and that it must have got lost in the post.
Following our second visit she referred us into the local Children's Hospital where we met with a specialist in Child Mental Health. This was January 2011. Again L was assessed, asked some questions, and we went through the situation as we saw it. We were very clear as to what the symptoms were.
At this time, L's behaviours were of the order of over-reacting, physically harming other children and generally being on a hair-trigger any time someone was in his space. He held no eye contact with anyone and did not play well with the other children at school. He would act selfishly, almost ignorant to the existence of other children when he was trying to do what he wanted. He did have friends, quite a few very close friends as well, and his social skills, whilst very specifically focussed on himself in an egocentric fashion, were there. One of the key facets of Autism is the social disengagement. The lack of a reference point to other people, and the inability to empathise. L did not exhibit this behaviour in a pure form, although it was clearly a part of his non-typical resopnses. This is part of the reason why there is an Autistic Spectrum, but also makes diagnosis very difficult.
There followed a series of meetings with the Educational Psychologist at school, with the Children's Hospital teams and with the specialist GP. Every meeting required us to chase up, ring and demand progress to be made. None of the meetings or appointments were coordinated or less than 3 months apart.
Eventually (probably around autumn 2011) we met with someone from the Family Support Service who acted in our interests. It was quite surprising having by this point spent 18 months bouncing around the system that actually someone was there to help us. And I am not referring to L, L was always in receipt of the best and most sympathetic of care and attention. Us as parents. Someone to help us navigate through the process, to chase up appointments, and to give us answers as to what should be happening next rather than being left to our own devices to guess and decide whether we were just being pushy or if actually we should have taken the next step by now.
It was shortly after this that the official diagnostic assessments took place.
This took the form of L being assessed by a specialist, with us the other side of a one-way mirror. I found the process intriguing and picked up how L was engaging with her in a number of ways, but then failing to engage in some other very specific ways.
A good example of one of the exercises to illustrate this point was when an imaginary sink was drawn on the table with the lady's finger. She explained where the taps were, where the soap was etc. Then she placed a sponge on the table.
She asked L to describe how he washed his face. Duly, L picked up the sponge and wiped his face. He was told to make sure there was water on it and duly pretended to turn on the tap. Next she asked him to brush his teeth, with no toothprush toothpaste or taps visible to start the process, L struggled. The difference was that the sponge acted as a literal trigger. Something he could hold. He could then imaging the rest of the bits. When asked to imaging the whole lot, he simply couldn't do it.
The result of this assessment was inconclusive. I recall the feedback we had with the assessor afterwards, how I highlighted these areas where L struggled and how it was reflected in how he behaved at home. Yet, it was inconclusive.
We continued our demands for an assessment and eventually, a few months later, we received a visit at home from the chair of the ASD assessment panel. She viewed L at home and a few days later at school. She told us afterwards that L was borderline from what she had seen, but what was clear was that the school were coping very well with L's needs and managing his behaviour well, and that without this, he probably was on the ASD spectrum.
So, now 3 months after the verbal decision was communicated to us following the meeting of the panel, we have the letter.
About bloody time!