Hello - Asperger's diagnosis/school advice needed

Hi everyone

My name is Kathy and I live with my partner and 3 children in West Yorkshire. I have joined for advice for my middle son, Dan, who is 13 and is still waiting for a diagnosis.

I don't know where to start.  I suppose with Dan's birth.  He was a month early by planned Caesarian section (due to first son being huge and suffering a birth injury).  Unfortunately he wasn't ready and had respiratory distress syndrome characterised by his lungs collapsing and him needing C-PAP and special care for a couple of weeks.  Also has had long term problems with ketotic hypoglycaemia (a problem where his blood sugar plummeted if he had a virus/infection).  Since Dan was born he has been "different", shy, low self esteem, and has had learning difficulties which although not severe have ranged from him needing speech therapy as a toddler and older child (briefly) to him having been assessed as "dyslexic" at the age of 8 after much pushing by us. At 2 we asked whether Dan was autistic as he was slow to speak, couldn't maintain eye contact and used to bite (hard) to avoid physical contact. We were told we were being silly. Dan started collecting bottle tops at age 8 (hiding them in his pillow case), a phase that passed quickly but which the school nurse said definitely wasn't a sign of ASD/Aspergers. Since then we've pushed for him to be assessed, with school only interested in what affects his actual learning rather than social issues. School have focused on his low self esteem. We asked again last year (after a serious incident at school) and the school nurse saw us again, saying she was the only way through to Hillbrook/CAMHS and stating again that she wouldn't refer him as she felt he was just being a boy and his issues weren't specific to ASD. Since starting secondary Dan has had no extra help in lessons at all. Since he was young he has sporadically run away, hidden, balled up emotionally and physically and acted inappropriately, most commonly when faced with any sort of authority.

More recently Dan has started taking himself out of lessons - just getting up and walking to "remove" to sit alone. He tells me that in lessons he switches off sometimes because it makes him calmer. His main issues are when faced with substitute teachers or changes to usual schedules. He comes home with writing all over his arms and sometimes face. He has also sworn at teachers, been led into doing dangerous things when at school (by kids taking advantage) and has got himself a reputation. At home things are generally ok as I can read him, but I avoid telling him off as he will shut off for hours or run away. This is obviously unfair on the others. Dan takes things very literally, and struggles to understand and "obey" social rules. For example when he got a yellow card for asking why he wasn't allowed his hands in his pockets - he genuinely didn't understand. He has started swearing at teachers.  He automatically rocks from foot to foot and averts his eyes with them (and with me when we talk properly).   

Last weekend I got a phonecall from the school's SENCO who said she had assessed him in school for his IEP again. She said he has literally no working auditory memory and very poor fine motor skills. She says this coupled with her discussions with teachers pushed her to ask for a referral to Hillbrook/CAMHS for ASD testing, and for referral to the Ed Psych. However, when I received a copy of this report, it was dated for November 2010 and the school nurse yet again says we have to start again with "information gathering" rather than a referral. Dan and I are meeting a primary mental health worker on 9th March with the school nurse for the same type of interview we've had 3 times now and has so far led to nothing. 

To top things off, the "Remove Coordinator" has made things very difficult at school now. I received a letter from her stating Dan had had 5 "yellow cards" for bad behaviour and this was to result in a detention after school for the day before they sent the letter. When I rang and explained how we'd only just received the letter, she was rude and said that Dan "Had no respect or he'd have turned up" - he wasn't aware of it. I stated that perhaps the system of only getting in touch with me after 5 yellow cards (which turned out to be 8) might not work and could they please ring me when he was in trouble, she said "If we did that for Dan, we'd never be off the phone - he is so bad he's always in trouble, he's AWFUL". Obviously I found this alarming as noone had mentioned this, and asked to speak to his year head - she refused to put me through so I rang back directly. The year head was quite angry that the Remove Coordinator had said this and promised to have words as the yellow cards were being ignored in Dan's case because they strongly believe he has Asperger's (something that seems to be reiterated by uninvolved teachers - that they don't feel he is "bad" but that he is struggling badly).   Later the same day I got a sniggering phonecall from the Remove Coordinator saying she had Dan with her and he'd made some foul comments about myself and his teachers (stating I'd sent him in to call them sexual swearwords). She seemed to find this very funny, sniggering and laughing and adding further rude words to the list. This turned out to be entirely false when we went straight to the school - Dan was in PE and hadn't even been in her care. When I explained what had happened to the Year Head again, she has had to take disciplinary measures against this lady as her claims were entirely false and (the part we were unaware of) she is not allowed to discuss pupils during school time over the phone as she has children in her presence and it breaks confidentiality.

Anyway, that's the level of week we've had - I am recovering from spinal surgery and have found it very tough. To top it off, I cut myself in the kitchen tonight, dealing with it badly and being sarcastic, saying "Thanks a bunch for jumping to my aid, boys" to my sons as they continued on the Xbox while I bled. This led to Dan calling me a profanity and storming upstairs, and now him telling my partner that it's not his fault if I deserve to get called that. I know I shouldn't be taking it personally but it's upset me so much that I'm fighting his corner to the detriment of the other children here and he doesn't seem to care one bit, in fact he seems so cold and uncaring.  However, just now he's come down, apologised of his own accord and sat and talked about how hard he's found this week with school.  Sums it up that I said we felt we were "walking on eggshells" and he thought this was a silly term as "You can't walk on eggshells, they'd break, silly!"  He does have a wicked sense of humour though, something my (mostly absent) family feels "proves" he can't possible have Asperger's.

I have been in touch with BADASG as they have an informal support group (SKAT?) meeting in Bradford the night before Dan's appointment, but if anyone can help or advise us what to do I would really appreciate the help. I have no clue what I'm doing and I'm obviously failing.  The good times aren't outweighing the bad, although I'm holding onto his jokes and smiles and trying to work past his upset and often cold attitude.

Sorry for the great long intro!

Kathy
xx