Hi everyone
I won't give a full history on Dan as it's massive and well laid out in my old thread/s, so the basics are that Dan was diagnosed in December at the age of 16 with autism and sensory issues and severe associated anxiety. He also has quite bad dyslexia and a recent OT assessment has picked up on some word processing issues along with motor planning/coordination and bilateral integration issues. Last week he had a big sensory assessment, a brand new way of doing it, he was the guinea pig for the local CAMHS.
Dan used to have facial tics (from primary school age), he would scrunch his face and blink. We were always told not to worry about them, they'd go away. They did, at around the age of about 10. These were definitely tics, not stims. However, we have watched them come back when Dan is anxious or otherwise "heightened", We also had concerns that a hand movement Dan does was a tic, although this is more under question. He bends his hand at the base of the fingers into a right angle and the hand moves in front of, and over his face, fringe, mouth, etc. He is not aware when he does it, and gets a "wrong feeling" when he is prevented from being able to do it (sports lesson with hands tied behind back). Regardless of whether that one is a tic or a stim, it has become clear from subsequent opening up by Dan that he has several tics now. We have seen the facial ones but only when he's worked up, he says it's there most of the time and never went away when he was younger - he describes it as a "tapping" under the skin of his face, and he feels compelled to rub it hard when it happens (although that is not the hand thing, it's different). He also gets involuntary shrugs when he wees, and his feet and legs twitch a lot. Apparently someone touching his legs or feet can bring them on or makes them worse. He also has signs of a vocal tic from his description of things - he says sometimes he can't get a word out. He can remember the word but his mouth won't make it, and sometimes he gets the first letters out. We had noticed him repeating words "the the" for example, and stumbling over words when agitated or animated/excited, but we had not noticed this inability to get them out, and had put the rest down to the word processing difficulties and his fast rate of speech. He did have speech therapy in the past for having very soft/babyish speech for his age (he was a late speaker) and for swapping consonents, particularly L for N sounds ("Can I have a life please" instead of "knife", etc).
Now I get to the bit where I really don't know what to do. Dan is in college, college are not supporting him properly (whole other thread), therefore his anxiety levels are through the roof. CAMHS have said college is the main cause of this anxiety. When I have spoken with the head clinical psychologist there, she has said that his tics are back because of this. Dan will not leave college and that is something we have to respect. We're in the middle of a big formal complaint process and CAMHS are going in to "educate" staff on how autism relates to Dan specifically.
The head psychologist says we should not under any circumstances treat the tics medically. She says medications for tics are very dangerous when it comes to side effects and we would be swapping one issue for a multitude of others. She has said that the key is his anxiety, and when his anxiety goes away, so should the tics, or certainly come back to a level he is not self conscious of. However, they're not treating his anxiety. He's going to have some hypnosis and NLP in a few weeks for his post traumatic stress, I don't know if this will help and at this point we have to wait and see if he is even a good candidate as they can only determine that once they start. He will be having an OT come into college to talk to him about emotional control and even try and talk him into going elsewhere, but in the meantime we are left dealing with this alone. Our GP will not deal with Dan's issues at all - he says children should never be medicated for depression or anxiety and that it's all down to poor parenting (get this, last year he even blamed my divorce when Dan was 2 at the time, and suggested most kids get over their "melodramatics" with a smacked bum! Yes we're changing GPs lol). I do go along with the basic premise of avoiding medication where other methods might be less risky, but we're not talking minor adolescent issues here, he's been hospitalised for a breakdown in the past. Visualisation isn't his strong suit so getting him to bring his own anxiety levels down is going to be tricky.
I was hoping you guys could fill me in on how you've approached these issues if you have experience of either? Is there anything we could be doing at home? We're in the process of waiting for the sensory report so we can make him a sensory bedroom but other than leaving him well alone when he's upset, I feel totally useless? I have booked two tickets for a talk by a gentleman who wrote books on mindfulness, it's at our local NAS group, but he doesn't want to go (social anxiety, God it all adds up doesn't it, the poor fella).
Thanks
Kathy
xx
