szxmum

A big thankyou to everyone who has responded to this thread <'> . I have had a good night's sleep and am feeling a lot more positive and less desperate. CAMHS in our area won't see ds as he is over 16 so he now comes under AMHS. I have made the decision overnight that I am going to phone AMHS tomorrow morning and ask for an appointment for me to meet the Occupational Therapist that will be seeing my son. I appreciate that she can't discuss him with me but it may help things if she can get an idea of what is going on at home and have some background info. to work with. It will also help me as I have also decided that I need help and support as much as my son. I can cope with most things but the two things that have brought me to my knees are the pee/cup/window issue and dealing with the episodes of intense tears/despair/depression/suicidal thoughts - the last episode of despair resulted in me giving up my job and took us down the dla / carer route. So thanks again to you all, I do appreciate your support, szxmum xxx

Thanks Sesley - that's a really good idea. I know it is reinforcing the obsessive thought but it may stop the behaviour that is causing me so much distress. Ultimately, I really need some help tackling his anxiety and the subsequent OCD. Thanks again <'>

Hi Baddad I posted a while back on this with a long list of odd behaviours when I was trying to get my head around this - this allowed me to start to differentiate between sensory (autistic) behaviours and OCD behaviours. (Don't know how to post link to the thread). Ds will compulsively wash his hands until they are red raw - in winter, the skin starts to break down and he gets chilblains. He will only use a clean towel that noone else has used. He pulls his sleeves over his hands to touch taps, door handles, bottle tops, loo seats He uses his elbows, forarms, feet to open / close doors - anything to avoid using his hands He uses antibiotic soap / handgel+++ He doesn't have an onsuite - he is not likely to get one, we live in a terrace - I have absolutely no idea what, if any difference that would make. He has said he does not like the thought of germs on his hands - I use the term germ phobia on this thread but not with him. szxmum

Welcome to the forum Amie. I also find this place the most amazing source of comfort and information.

I think ds has mastered this with his eyes open . I have seen him in a crowded room or a crowded street - he can walk through it but there really is "no-one behind the eyes". He has somehow removed himself or is somehow closing out the onslaught on his senses. His Nurture Group teacher also noticed this "skill" of withdrawing. He also said that he had mastered his body language so as to become invisible in the group and not draw attention to himself - I suppose it's a protection mechanism and stops overstimulation of his senses - sight, sound, touch and subsequent anxiety.

You may remember a post of mine when I mentioned ds (17) peed into a cup and threw it out his bedroom window. A couple of you came back with a germ / toilet phobia being a possibility. Well I discussed this with ds and he admitted to a germ phobia - he hates the thought of germs being on his hands, which explains a lot of the more bizarre behaviours. Although I can cope with / tolerate most of the behaviours, I CANNOT tolerate this peeing into a cup and throwing it out the window - it is gross, disgusting and unhygenic. After a chat, ds promised faithfully that he would not do it and promised that if he did, he would not lie and would tell me. This afternoon, I find out that he has been continuing and then he lied to me when I asked him about it. I try very hard to support ds with his anxiety but I'm ashamed to say that I really lost it today. I was so upset and angry both with the behaviour and his lying. DH also got it in the neck - talk about saying the wrong thing at the wrong time - he said, we can't deal with this on our own, we need help. Well, who does he think is going to help us - Santa Claus or maybe the Good Fairy. That's how dh deals with all this "I'm not qualified, we need an expert". Well his comment made me panic - I DON'T KNOW WHO ELSE TO ASK FOR HELP - I've tried school, the Educational Psychologist, our Gp and AMHS - I go round in circles. Ds has an appointment a week on Monday with the same Occupational Therapist at AMHS that he saw last year - I'm sorry but counselling and group CBT made absolutely NO difference what-so-ever. Plus, she won't speak to me - ds is the client, NOT me. Will he tell her that he pees in a cup and throws it out the window - hmmnnn, I don't think so, that'll be if I can even get him to step through the door in the first place. I am so at my wits end with all this, I don't know what to do.

It has been put to us that one of the reasons for our ds's late diagnosis (17) was the fact that he never exhibited any loud, agressive, violent or otherwise noticeable "meltdowns". He was always a very quiet, well-behaved, introverted child. In hindsight and looking at his behaviour now, I notice that he is a master of the "shutdown". He withdraws into himself and the shutters come over his eyes - there is "no-one home". He can stay like this for long periods of time. I have asked him about this and he has said that it helps him "zone out" noise or light and he doesn't have to "endure" the anxiety of talking to other people. Is anyone else familiar with this? What forms do your meltdowns or shutdowns take?

Diane, your post and Mumble's replies have touched a nerve with me. The anxiety is such a cruel part of ASD and has far-reaching consequences for both the person with the ASD and the family who are trying to support them. I try not to look back but I sometimes wonder if we had had an earlier diagnosis and more support put in place whether ds's anxiety would have developed to the extent that it has done and whether my family would now be in this position (I have given up work to care for ds and would do so again in a heartbeat but our financial situation is now pants!! ) - hindsight is such a wonderful thing! Ds, 17, is currently not functioning due to not sleeping, panic attacks, phobias, OCD and depression. I too am looking at the possibility of meds for ds, he has had group CBT but tbh I don't think he is mature enough to put the personal work required into CBT. I do understand your reservations about meds Diane but I personally seem to have gone past this point - they wouldn't deny a diabetic insulin so why is it okay for my son to suffer emotionally when there are meds out there that could possibly improve his quality of life. It makes me so mad that they won't prescribe meds for him. We received an appointment today for AMHS and it is with the same woman who ran the group CBT sessions - an Occupational Therapist. I am going to have to ask for an appointment with a Psychiatrist to discuss meds - why does it have to be so hard :wallbash: Sorry, I didn't mean to hijack your thread. I really do hope that some people who work in the NHS or in Education read theses stories. Maybe, just maybe, with earlier diagnoses, earlier intervention and more support we will not have to travel the long road that Mumble speaks about - that's my hope anyway. Anyway, I'll keep my fingers crossed for your ds meeting with the Psychiatrist, szxmum xxxx

Just wanted to let you know I'm thinking about you Smiley. As Bid said there is no right or wrong way to grieve, just remember to look after yourself <'> ><

Sally, just wanted to send you lots of <'> >< <'> >< <'> I have also been through this and would give the following advice - take it one step at a time and look after yourself; go to find out what benefits you are entitled to asap (don't leave it like I did as you may miss out on money that you are entitled to - they wouldn't back-date in my case); don't tell your bank that there are problems or they may freeze any joint accounts (again this happened to me); in time, do go to relate, for you; as said above do encourage hubbie to go to Gp and do go yourself if necessary. You don't know what's going to happen, so one step at a time. My hubbie and I separated for six months - I did forgive, I've never forgotten but I did come out stronger. Lots of love and thinking of you <'>

Just musing - rather than "because of" Autism would this not come under the "part of" Autism or "characteristics related to" Autism ie unusual sensory / perceptual processing systems.

I've signed xxx

For anyone who is interested http://www.autism.com/families/therapy/kaplan_int.htm szxmum

Still on my researching Autism mission - note to self, must get off computer and go wash dishes! Just found another piece of jaw-dropping information - well it's relevant to me and my family. My ds has a lazy eye. I have read (I don't believe everything that I read, honest, but I do find it interesting) that 2-4% of the general population have a lazy eye compared to 21-50% of the Autistic population. My Dad who is dead now but who I suspect was an undiagnosed AS also had a lazy eye. Has anyone else noticed this in their families?

Just been doing some on-line research, am trying hard to get a realistic, balanced picture. 9% of adults with AS live with a married partner or on their own (Geller and Cavanagh, 2005) 66% of adults with AS live with their parents (Geller and Cavanagh, 2005) 3% of adults with AS live independently (Barnard et al, 2001) 12% of adults with AS are in full-time employment (NAS) Is this correct? Any thoughts / opinions? (Nice ones please, feeling very fragile) szxmum

Haven't been on the forums for a month (had to step away as everything was all getting too much) but thought I'd drop by to post an update. A month ago ds, 17, was officially diagnosed with Asperger's Syndrome by Educational Psychologist. Eeeee what a difficult month this has been. Shortly after diagnosis we had another suicidal episode (second in a year), just thoughts and talking about it, no actions thank God. So back we go to the Gp and get yet another referral through to Adult Mental Health Services (still waiting for an appointment but I now carry their crisis phone number with me at all times). I have left my job in order to care for ds and although I would do so again in a heartbeat, this is causing a lot of financial and emotional strain at home. We also took ds out of school and applied for DLA, he is now receiving middle rate care and lower rate mobility. I have applied for Carer's Allowance and am waiting to hear. Filling in the DLA form for my son was tough (I ended up filling it in and he read and signed it), I'm still in shock, it is so hard to label your child as disabled and think of him as not able to function. I still want to deny it and say it's not so bad but the fact of the matter is that at the moment, because of his AS and mental health problems he cannot function independently, he cannot go to school, college or work. I have been pouring over NICE guidelines for depression, anxiety and OCD (it's a pity the guidelines for Autism are a work in progress) and I have also been looking at AMHS care plans. So when ds's AMHS appointment finally comes through, I'll know what support he (and me as carer) are entitled to. Trust me, there will be no more labelling ds as shy and me as an anxious mother – it's awful to feel that you have to fight in this way but I do feel that finally people are beginning to take note and to take us seriously. As regards support for the AS, I feel like I've hit a brick wall. The Ed Psych has made a lot of recommendations and labelled ds as high level needs but it is TOO LATE. Because of his experience at school there is no way that I can get him back through the door to access the social skills and social communication training that she is recommending. I don't know whether her report will count for anything with AMHS and whether they will be obliged to follow-up her AS specific recommendations or whether they will just concentrate on his mental health. Who knows, lets just say given past experience, I'm not holding my breath. I would be interested to hear from other parents. Have you gone through something similar? How did you get through it? To people with AS – Has something similar happened to you? Did you find the courage to go back to college or venture into work? What made you venture out again from your home and comfort zone? How did you cope with the debillitating anxiety? Is medication or CBT helpful? As always, any thoughts or advice would be gratefully received.

Thanks to you all for your kind words and thoughts. Bid your post made me cry (nicely cry IYKWIM) - yes I did know, I knew it was "something" long, long before anyone ever mentioned Autism or Aspergers, I just didn't know what IT was or what to do. Grieving - yes I can relate to that to. Eeeehhhh - I'm an emotional, blubbering mess at the moment Think I'll take a leaf out of Karen's book and have a glass of red wine tonight - or maybe two

Just heard through school just now that the Educational Pyschologist has officially diagnosed my ds, 17 with Asperger's Syndrome. It's bizarre, all of a sudden they are talking freely about Autism, communication difficulties, targets, outcomes, support - you name it. One well meaning member of staff said that my ds was "the most Asperger's young person she had ever met" - what the h*ll is that supposed to mean and is it supposed to make me feel better Am I now supposed to be grateful for this diagnosis? How do I feel? I don't know - kn*ckered, exhausted, tearful, angry, resentful, bitter - any and all of those, take your pick. I certainly don't feel elated and I don't feel reassured and I don't feel validated - I just feel saddened, why has ds and my family had to suffer so much before getting to this point? Yes I know - it does no good to look back or beat yourself up. So... the facts of the matter now are: DS has AS DS has mental health problems - depression, anxiety, OCD and phobias DS is disabled in that at this moment in time, he cannot function in "normal" society. At this moment, he is in his bedroom and given the choice, that is where he would choose to stay - a safe place where no one can hurt him. It breaks my heart

I promised myself that I wouldn't read this forum or post today - I've failed miserably A very well-worded post Hamish (much better than some of my own ham-fisted attempts ) My hope is the same as yours and I would expand on it - I hope for a wider professional understanding of the spectrum that enables children who are "flying under the radar" to be pro-actively identified and supported earlier thus avoiding or lessening the impact of mental health problems.

Mel, I am so, so sorry <'> >< <'> I can so relate to this. It is horrible watching your son want to be friends but be unable to relate to others, to watch potential companions come and invariably go, to watch the dawning realisation when they realise they are "different" to their peers. It breaks your heart knowing you cannot stop their pain. The support groups that BD and Sally suggest seem a good idea. I'm also going to see if there are any in our area for my own ds. Anyway, I'll be thinking of you both <'>

Ooooh I know that one, I get "stop worrying - he's fine" God love your SENCO, I'm sure she meant well

That last sentence of mine comes over all wrong because it assumes a negative outcome but I don't know how to word it any better

I can so relate to this post, I could have written it myself. I can still feel the cold sweat that ran through my body when they first mentioned Autism, Aspergers and ds in the same sentence. I too thought of Rainman or I'm ashamed to say a non-verbal person sitting rocking. I too have posted without having an official, written dx and am so glad I did - I have received an immense amount of support from people that I don't know who have given up their time to respond to my posts. I no longer feel alone and the relief that that brings is priceless. I have read a lot of these posts and have seen so many in-depth discussions about is it or is it not Autism. My own feeling is this should not be a dx-only club - surely what is important is the outcome in people's lives and make no mistake, that can be devastating, I almost lost my son. I don't like to think how close we came to being a "tragic" statistic through not knowing and not understanding. In my mind, raising awareness and helping and supporting people with the outcome of Autism is what is important - vitally important.

Oh dear - I do seem to have started a bit of a heated discussion - I hope I haven't upset anyone with this thread but it looks as if I have - slinks off quietly.... Comes back, saying meekly.... I am no expert on Autism - in fact this is all so new to me and I can't thank everyone enough for all the support that I have been on this forum. I started this thread as a wry observation of my own family background - nothing more. Like many, we are a troubled family - nothing unique in that. My feeling is that we have a higher than average concentration of mental heath problems in our family - I was aware of this long before I new anything about Autism and Asperger's Syndrome. I am now aware that many family members exhibit autistic traits. I am not labelling any of them with autism just wondering IF there is a link between the (now obvious to me) autistic traits and the mental health problems. It would seem to make sense but I'm not a professional so I guess I'll never really know. As far as my own ds goes (wherever it came from) he does exhibit the triad of impairments and he is likely to be getting a diagnosis of AS. He does exhibit OCD whether this is AS related or anxiety related, I don't know - it's probably a bit of both. Like many, many people with AS he has high levels of anxiety and associated MH problems. In fact, at this moment in time he is emotionally burnt out. The diagnosis or the label are really immaterial to me - what matters is how he is suffering / has suffered in the past. If a diagnosis helps me get him the help he needs for now and in the future - I'll fight to get it. If my son's diagnosis helps to raise awareness of AS and / or MH problems in young people then that is all to the good too. Sorry again for any upset, szxmum xx

Just got back from spending the afternoon with my own dm - when oh when will I learn NOT to expect support from that woman - arrrggghhhh Told her everything that had been going on over the past few weeks and how I felt so much more happy and positive with the situation - big mistake - huge. First - oh there's absolutely nothing at all wrong with ds - he's fine, just a little shy Next - well what's he going to do with his life - he NEEDS to earn a living - he can't go onto benefits - she did everything but wail and beat her chest Finally - the killer - he's a prime candidate for self-medication, you know - just like your Dad. Gee thanks Mum Am sooooo mad with myself - ONE of these days I'll learn NOT to keep putting my hand in the fire - it burns and I get hurt Sorry for the rant - off to feed the rabble now xxx