Since CAMHS made their little suggestion about a diagnosis for ASD for 2son, life has considerably changed.
I had a long talk with the National Autistic Society who were very helpful and reassuring although the news is really rather scary that there is no agreed diagnosis procedure so the quality of an assessment for ASD depends on who is doing it is and how. It should be done by a multi-disciplinary team with a mix of speech and language therapist, psychiatrist, clinical psychologist, occupational therapist and/or paediatrician and one can demand a specialist team to perform the assessment so at least I now have some understanding of the process and my rights within it.
I went back to talk to teach at CAMHS and discussed with her that I was not convinced at all that this would be an appropriate diagnosis for 2son, although was quite happy (?) for the assessment to go ahead. I explained that I felt that her observations of 2son which did tick the ASD boxes were more part of him not wanting to be at CAMHS or talking about school or his behaviour so he withdrew from the conversations as much as possible. I also reiterated, not for the first time, that I felt the total lack of any talking therapy to try and establish what is going on in 2son’s head was also an issue. Teach listened to me, was supportive of my concerns, and more or less agreed with everything I said. I felt that I said all that I needed to say and was heard.
That was 10 days ago.
Since then, and whether it is cause and effect I do not know, 2son has retreated further. His sleep pattern has shifted totally; he is not communicating with me in anything other than snarls, grunts and hisses although he still gives me the occasional hug. He is refusing to go to bed in the evening at all and I have discovered him several mornings asleep on the sofa downstairs. This morning he’d almost finished a 400 page book that he’d started the night before, probably because I took all the remote controls up to bed with me to prevent him playing on the wii or watching television. The TV does have buttons so I can’t entirely stop him watching but it does make it harder. When he has been up in the morning he’s been ebullient, talking loudly and non stop and trying to break his brothers’ adherence to pattern and routine. So he is rejecting the last bits of routine to which he was still clinging and there is no communication at all.
Following his own pattern means that he is also withdrawing from his brothers and spending a lot less time with them, whether it’s playing, watching television, eating or talking. He’s discovered cheese and biscuits and midnight snacks and is mostly refusing to eat with us as a family at all. He slapped 3son (lightly) at the weekend for daring to tell him that he wasn’t concerned about messing up his education. Sentiments that I agree with, although they were not diplomatically phrased! This is the first time ever he has reacted violently to something, however gently and it’s worrying.
The job structure in which teach works is being moved from one arm of the council to another. This all is being done before the council makes their budget decisions and announcements shortly. Everyone is on notice of potential redundancies with many cuts in Children’s Services being suggested so fear is in the air. Priorities for therapy are understandably given to those with the greatest need but that doesn’t help. There is no finance available for home tuition (and this is before the cuts have been announced) and the chances of getting him therapy at home is going to do anything but go up.
We were spending a fortnight trying to bribe him back to school with small financial incentive but that has really gone by the wayside. School is applying pressure for talking therapy as well but thera was not encouraging about this, saying it would be far better for it to happen at school, ignoring the fact that he isn’t going. What lay unsaid was that this would come out of a different budget. We shall meet up before half term to discuss plan B and I’m apprehensive that the only plan will be no plan. There is talk that if you cannot get him to co-operate and engage with the professionals that there is nothing to be done.
Where does this leave me? Trying not to scream when 2son is being difficult, belligerent, non-co-operative and doing it from first thing in the morning to last thing at night. I’m trying to keep hold of my positive thoughts and to get on with what I can achieve. I’m trying to not get cross before I’ve had my first cup of tea in the morning and that’s very hard.