bonbons

Hi, been reading this thread with interest as we are in similar situation with my DD, aged 15 and dx of ASD/aytipical aspergers. She has been effectively out of education for the last 7 months, with a short return to her mainstream high school in september. The support put in place at this time was not enough to enable her to cope and so the statementing process began. We seem to be actually doing quite well so I am told, as all our reports and detailed parental info has been submtted, her medical, and her ed psych visit complete, and according to the pupil referral unit she is attending for 5 hours a week, the LEA have been in touch for info from them and are 'in the process of writing the statement as we speak', as they put it during that conversation a couple of weeks ago, so it feels like we're making real progress! What is bothering me a bit after reading everyone's comments and advice, is that we do have a school in mind which is out of area, and have highlighted this to them, as have others in various reports, however, she has never been assessed at the school or even visited it, as when this whole process began, I contacted this proprosed non funded special school, spoke to the headmaster and explained my DD's situation. He advised me that it was good that application for statement has begun, and that the do have a couple of pupils there from the town in which we live, and that we should contact him again once the statemnt is secured to arrange short preliminary visits and assessments at that time? Do you think this about right? He didn't give the impression that there were no places available! When would the best time be to arrange a visit do you think? Does anyone have knowledge or experience of any other ASD specialist schools in the north west which might be worth a visit which ever place she does go to must be the right one for her Beverley, Cheshire,

Hi, and welcome to forum. I hope that you find it as useful as I do! I too have 4 children, a son of 22, twins of almost 20, and a 15 year old daughter recently diagnosed with atypical aspergers/ASD. It has been and still is a difficult journey for us too but at least her diagnosis, although late, has helped everyone concerned to understand the difficulties she has had. She also suffered a lot at the hands of bullies, both physically and mentally without always telling us the full extent of it, and is now out of mainstream education as she could no longer cope and had developed severe behavioral problems with which they were unable to cope. Her anxiety levels can be very high, her thoughts very rigid, and her intrests very restricted. She has one good friend for which I am thankful, but is really struggling socially. Puberty has not helped!! WE are also waiting for her statement to be agreed so that she may be found a place at a more specialist school to help address these, and other difficulties, and it is a long wait!! where are you up to in the process? Is your DD ok at mainstream school? It seems that girls do seem to get their diagnosis later than boys very often, and I think that it is fortunate that your youngster will hopefully get the extra support she may need earlier than mine did, especially in her transistion to high school when the time comes....something which my DD found extremely difficult!I understand that the statementing process can take up to 6 months!! We are 4 months in now with everything submitted and all of her appointments complete... just a waiting game with more difficulties ahead when the time comes to go to her new school, but fingers crossed, her last 2 years of high school will be a whole lot happier than the first 3!! On a brighter note, when she is in a more positive frame of mind, she is funny, interesting and good company, and I am learning so much about her all the time. Not easy at the moment though.... chin up, and good luck with the statement!! x Beverley Cheshire.

Hi karen...just wanted to say 'thank you' before you leave. You were the first person to make contact with me and offer advice and support when I first joined the forum a few months ago. As my DD's dx is quite recent,her problems ongoing, and I am still at the point where I feel I have so much to learn and this forum has been a good place to visit, but, it is already taking up a fair bit of my free time, so I understand your decision! Best wishes for the future. Take care Beverley.x

Hi chloesmum....and thanks to everyone else who contributed to this thread, as your advice and insight has been so terribly helpful to me too.......scarily similar situation to yours tbh...Daughter 15 years old, recently diagnosed and displaying many of the behaviours you described, both at home and at school, eventually leading to her being excluded from high school. Anxiety levels so high she could no longer cope in mainstream and is currently out of education and waiting for statement to come through which will hopefully secure a place at a specialist school which can address her difficulties and hopefully give her the help and support she needs for the future. As little as 6 months ago, the throwing and smashing of objects, kicking through of doors,and self harming, was a very regular occurance but now that she is away from school, her behaviour has considerably improved!She's still hard work...always have to think about what I say and how I phrase things....Have found that, with her anyway, it's best to react as little as possible when she does explode, and let her have time to process what happened, rather than get mad with her at the time...that just makes a bad situation worse!! She calms down much quicker this way , I find, and will usually then apologise. Keeping her well informed with regards to doctors/camhs/dental etc appointments, or other plans so that she knows what to expect and has time to adjust to the situation has also helped...before, I perhaps would spring things upon her and it would make her angry and anxious! I am still learning all I can about ASD and this is a great place for advice and information. One concern I do have at the moment is tummy problems...sick on a daily basis which doctor says is anxiety related, and the only meds she has been prescribed is for this, and they don't seem to be helping!? When a child is diagnosed late like this, as a parent you have to re think how you parent in many ways, and I see now the mistakes I have made that have, in the past made things worse, and techniques I have since tried, that have made things better, and I ,like you, am still in the thick of it, and I'm sure, whilst progress has been made, there will be more challenges ahead! I understand her world much better now though!It's good to read on here though, that this won't go on forever, for their sake and for ours!! Take care Beverley, Cheshire.

Hi sally....We are about 3 months into the statementing process so it is very much a waiting game.She has seen everyone she needs to see and we have just submitted our views along with a fab report about her educational needs from the PRU (pupil referral unit),and another from the young persons psychiatric unit where she was assessed in the summer. It was the headmistress of the education dept there, who highly recommended a particular independant school specialising in ASD/ aspergers. We are very impressed with this school, and it is a place there that we are pushing for.We have carefully highlighted what we would like for our daughter with regards to a nurturing, theraputic environment addressing her social and communication difficulties, anxiety, anger, self esteem, etc etc, all of which this school can offer. It is out of area however, and the provision for children on the spectrum within our LEA is limited to a couple of small units attached to mainstream schools and which currently, are full. We are hoping therefore that this work in our favour. I will draught a letter, as you suggested, to her high school, documenting the incident, and forward a copy on to the person dealing with her statement. Do you think they will include it when putting together her proposed statement even though it is not with the rest of the paperwork? I hope so, as it does highlight the inadequacies of the amount and type of education she is currently receiving, and the potential problems that may occur the longer this goes on! will keep you posted! Beverley.

Thanks Sally....I can see what your saying. I think that I will document this and send a written copy to the school, just so that it is recorded, or maybe email the senco there, and also forward a copy to the lady on the inclusion team who is dealing with Daisy's case at the LEA. Thanks for the advice Beverley.

All our parental info is typed up, very supportive reports attached, and it will go into the post box tomorrow morning!! So glad that bits done! Ed psych visit is also complete, as is her medical.....how long now I wonder?

I must say, I was a bit shaken by that last comment!! My DD IS supervised nearly all of the time apart from a gap of an hour or two here and there, by three adults, and we are doing remarkably well given the circumstances! I have pushed for more hours at the PRU as 5 hours is very little...originally, it was only 2 hours!!! WE are up to the part of the statement process which requires our parental advice, and I have typed out pages of information to explain in detail, all of our views and what it seems to us and others, her educational needs are, and requested 2 reports to accompany our submission, highlighting my concerns that she is becoming isolated and missing social contact with children her own age, in the hope that it will speed up the process!!We try to do fun family things every weekend, involving her friend as much as possible, and I explain every step of this whole process to her so that she is imformed and understands what we hope to achieve for her....what more can we do? This last incident upset me bacause the whole police thing made it sound like she was a criminal, which she isn't, and I feel like, although she is still on role with the school, she is very much a case of 'out of sight, out of mind', The occasional phone call or email asking how she is doing, wouldn't have gone a miss in my opinion! Beverley Cheshire.

Hi...thank you all for your points of view...and yes, of course I see that it was ,and potentially still could be, a difficult situation.I was really upset on the day it happened and perhaps less emotional about it now!! Actually, she has made a fair bit of progress since being away from high school, in some ways anyway. Because the stress of going to a place where she was unhappy has now gone, her anxiety has decreased hugely, and her behaviour at home much improved. She only attends the PRU every other day for an hour or two and neither my husband nor I would be able to give up our jobs ( hopefully she will be back in full time education fairly soon!), however, we manage to cover the days between us and her older brother, to ensure that she is with one of us most of the time. She clearly chose her moment! I did speak to her about it, made sure that she knew that she simply couldn't go to the school grounds inside school hours, that abusive language would not be tolerated etc... she apologised but still defended her decision saying that she 'missed seeing people'. School have also admitted that the secretary's message had been lost in translation and that in the first instance, they would , of course contact a family member, so issue is resolved I guess. Don't think she will attempt it again somehow....

I am so upset with my 15 year old dd's old high school!! To keep the background brief in case you've read my previous posts, she has had a horrible time in high school from day one, and was severely bullied. the last 2 years have seen a gradual decline in her ability to learn and function there and a couple of very traumatic months in a young persons psychiatric unit, finally revealed her dx of atypical aspergers/ASD, the cause of her difficulties and,at the time, challenging behaviour. She only managed to return to high school after the summer holidays, for a total of 5 days with a support plan, in place, but this failed very quickly for many reasons, and she was subsequently excluded permanantly under a managed transfer scheme. She is in the middle of the statementing process and attends a PRU where she recieves only 5 hours per week education, but a lot of support and patience! She has only one friend who she she spends every weekend with, but apart from that, has no social contact with children of her own age as she is the only pupil at the PRU. Yesterday, without my knowledge, she decided to go to the school grounds. She apparently caused a 'commotion', and I had to go and collect her. When I arrived, she had already gone home, but I was told in a later telephone call, that she had been rude and abusive to the teacher who asked her to leave the premises, and had made some disturbing comments to him leading him to think that she may harm herself! They also told me that if she turned up there again, they would have her escourted from the premises by the police! I make no excuses for my DD's use of bad language ( happens only when very angry!), and she knows that, and thankfully, I can dissmiss the comments she made which led staff to think she may put herself in danger, as she often quotes song lyrics to express herself as she cannot easily find her own words and also has a tendancy to turn the tables when she knows she is in the wrong so that the emphasis becomes one of sympathy rather than disaproval, but what I can't excuse is the schools need to call for police involvement should this reoccur! Can they do this? Shouldn't they call us first as they did yesterday? What the still see is an angry, difficult, un-cooperative individual, who caused them too many problems, but what I see, is a vulnerable, confused, rejected and socially isolated child who just wanted to say 'hello'! Hopefuuly, she will soon be given an opportunity to find more a more specialised place with teachers and pupils who understand what makes her tick, and help her to understand it too.......

hello David. nice to hear from you. My daughter is 15 and recently diagnosed. She has had a tough time both with bullying and getting into a fair bit of trouble at mainstream high school! We are hoping to get a place for her at a particular special school and are keeping our fingers crossed that it will be a happy and supportive experience! Good to know that there is another option though if it doesn't turn out as we hope, and glad it is going so well for you Beverley Cheshire.

hi Nicole...so know how you feel!! My dd's problems with anger and aggression began a couple of years ago but her ASD was not diagnosed until a few months back! At first, the negative behaviour was just at home and I was concerned that she was being bullied and then it was transferred to school...then both, and it got her into lots of trouble.....another story!! as this behaviour esculated, we were at our wits end! She became a 'thrower', a 'smasher' a 'door kicker' etc.....very destructive and ruined a lot of the things my husband and I had worked hard for! Trouble was,and without realising it, I began to let the boundaries slip because I knew that the concequences of saying 'no' to something would very likely result in the breaking of something, maybe verbal abuse too. tightening the boundaries and standing my ground despite what may follow was the key for me. It was hard to do , she tried to up the anti every time ,and certainly wasn't keen on the more assertive me, but with time I amazed with what has been achieved! Don't get me wrong, she still has her moments but not nearly as bad as they were! ASD or not, I realised that she had to know what was acceptable and what wasn't and face consequences for her actions but she also knows that I love her and want help and support her, and always knows where to come for a hug if she wants one! You may well do all of these things nicole, It's just your story struck a chord and this is something that I realised I needed to get right, and it seems to be working for me in our situation....still learning though and as smiley said, reading up on subject is very useful as I have learnt better techniques with regards to communicating with her better which helps to prevent these outbursts in the first place. My DD is just 15 now...smiley, reading your advice and of your experience really helps me to understand her better...thank you.....and good luck Nicole! Beverley, Cheshire

Hi M...quick reply as on my way to work. Glad that your DD didn't struggle too much at school.Primary school was ok for her although she didn't make friends too well, but was,at that point, unaware of childrens view of her. When she got to high school her anxieties really kicked in and she told me recently that she had never realised how horrible people can be until she started there...thats where her anger issues stem from...lots of bullying etc...of course now she isn't in school, her behaviour is much improved! Husband still recovering from his emotional battle of 'can I go, can I not' over the weekend. see what g.p. says today....IF he bothers to mention AS!! never heard of social stories but will follow your link when i get a chance....and yes!! By all means, PM me whenever you like!! It's good to find someone in a similar situation! Have a good day! beverley x

Hmmm...some interesting comparisons!! Yeah, I have found that the more I learn about AS the more I try to adapt my own communication skills, as you say, wording things differently and to the point, keeping my tone even and always trying to centre things from her point of view rather than mine, helps her to understand better and minimise challenging behaviour. Not thought of trying these techniques with my husband though??? we has a family meal at the weekend, and he was so stressed out about the whole thing that I made him stay at home and take the pressure off himself. I had a lovely time!!We do try to get out together when we can and he has been out on work events and things....he's ok if he's comfortable with the company and there are not that many people he is comfortable with. The struggle he had at the weekend has prompted him to see his doctor again this week and I may suggest at least mentioning the possibility of AS. I don't know if a dx would help or not....my daughter is only slowly coming to accept hers and I hope that it will eventually help her to understand herself better and not give herself such a hard time.....this is what I would hope would happen for hubbie if it were to be the case. My daughter is to start some cognitive behaviour sessions soon and I think in my humble opinion that this is just what he needs to. How did your DD get on at high school? This is a particularly difficult time as despite best efforts by her school to support her needs, she is now, after many exclusions, out of mainstream education as it is felt she would be better served at a more specialist school, so we are in the middle of the whole statementing process and keeping our fingers crossed that with the right help and support, she can thrive and have a more positive future. Sorry to hear that you have been unwell. I too have good days and bad days and stress can have such a physical effect on you! I can talk quite a lot too!!! Beverley.

Hi, nice to hear from you. I have a 15 year old daughter recently diagnosed with ASD. I have always said, long before her diagbosis came, that she and my husband are so alike......these days, I am really wondering whether he is ASD too? He has had periods of depression over the years and our daughters difficulties which surfaced more as she hit puberty, have proved much more difficult for him to handle than me! She shouts, he shouts louder, and I always tell him that he needs to try and remain calm and in control and to give her times and space when she has an episode. He struggles socially and avoids these situations like the plague....hates lots of people, even family gatherings, hates eating in front of people because he likes so few things and feels like people are always on his case about it. Very cahangeable, self concious and has low self esteem. He often apologises to me as he thinks he holds me back because I have to turn down so many invitations as I know that even the thought of going would stress him out.......I just wonder thats all!?

thankyou for all of your valuable information. I haven't got a copy of SEN code of practice actually....where will I obtain this from? I have now made an appointment with parent partnerships so that they may help us to formulate our response properly. NAS are sending me some info about statement process too and other post diagnosis stuff......thanks for pointing us in the right direction. Beverley Cheshire.

six weeks into statement process and received letter today to tell us that the assessment process will now begin. Now have appendix A parts ii and iii to complete, giving parental advice and feeling the pressure of making sure we do this correctly. I am very aware that this is all about her educational needs however, my concerns revolve more around her emotional needs...anxiety and anger issues, social communication skills, motivation, self esteem etc etc etc. without the professional support of someone who fully understands the complexities of these issues, she is never going to be able or want to apply herself academically, which is why we are pushing for a particular school who have this type of emphasis. although it is out of area. Nowhere within my local LEA can offer this standard of care and expertise. Is it fair enough to outline these difficulties as our main areas of concern or do they want to know more about her problems with focus purely in the classroom? Also, with regards to submitting reports from other people, who should we be requesting reports from? Don't the LEA already have all of the documentation they need from that supplied by school/ CAMHS/ YPC, for the initial stag meeting? Beverley. Cheshire.

hi...My DD has always been the same...would rather suffer than take liquid medicines of any kind and has luckily never needed an antibiotic. She will now reluctantly swallow tablet /capsule form now she is older, but when she was younger, I used to buy 'disprol' soluble paracetamol tablets and dissolve them in a carton of ribena! couldn't get away with dissolving it in a glass as she would see the bits and refuse to take it but hiding it in a carton worked a treat!! devious but effective!!! Good luck. Beverley. Cheshire.

thanks for all your advice. I spoke to the therapist I mentioned. He was nice enough but explained that he does not do NHS referrals contrary to the NAS info and that his rate is £40 per 50 minute session. I took another look at the 'calm minds' website and was a bit put off my the readers digest type testimonials to be honest..... Think I may see what next weeks appointment brings with regards to what they referred to as 'the way forward' before dissmissing CAHMS input. Maybe it's me being a bit cynical due to experiences with them so far and desperation to get things sorted out for my DD. Still surprised at how little help is available though, in my area at least....

Hi, just wondered if anyone had tried CBT, and if so, what you think? My 15year old DD ( ASD/aspergers atypical aspergers)has had a tough year! She is currently out of eduacation awaiting a statement to hopefully take her forward for specialist eduacation however,is at such a low point right now that she doesn't want to even think about starting a new school let alone visit any when the time comes. She is convinced that nobody can help or understand her and that she will face the same problems especially with bullying. whilst waiting for the statement process to complete, I have been thinking that some form of therapy may help her become more accepting of the idea and give her the best chance of settling in and making it work for her, however, there seems to be little on offer in my area. CAMHS have offered to start some CBT sessions with her but have admitted that they don't have someone who is especially trained to do this but that she ( head psychiatric nurse who neither myself or DD are particularly impressed with for various reasons),'has a certificate' allowing her to do some work in this area. CAMHS are not specilalised in ASD and I am therefore sceptical about what these sessions may offer my daughter! There is a little alarm bell ringing in my head! why is it so hard to find therapists with a particular understanding in this area, ideally one who could work with a child in their own home? I have come across the name of one such therapist on a website called ' calm minds', and when I checked my notes, discovered that his name is also one featured on the NAS's database. Would you say that this endorsement is reliable? He is a private therapist so quite costly but, it seems, does take NHS referrals via the G.P. what do you think? Go down the independent route or give CAMHS a chance? Beverley. Cheshire.

my DD has also had a terrible time since going into high school. Now out of education as her anxieties resulted in angry and aggressive outbursts and it was felt that she wasn't coping with mainstream. statement process is underway with the LA agreeing to assess her, and a particular non maintained special school has been strongly recommended to us as the best place to help her...it does seem fantastic and we have made our wishes known to everyone involved in her situation, and everyone agrees, however this school is out of our area. There are several special units in our town specialising in ASD but at the moment there are no places available in any of them so have been told that if this remains the case by the time her statement is complete, then the LA will have to look out of area. I am pinning my hopes on her going there as I strongly feel it is the right place for her but worry that if they can keep her local they will even though a mainstream setting has proved not to work! I think we will have a fight on our hands when the time comes!

just an update. ADOS assesment results came back after 8 days!! confirmed paeds DX...just as we thought! feel like we can move on now.

Got a phone call today from CAMHS confirming that my 15 yr old DD does 'meet the criteria' for ASD, contrary to what they believed but backing up the professional opinion of the paediatric psychiatrist and our own parental instinct!! very relieved to have finally arrived at this point Annoyed at CAMHS attitude though ( surprise, surprise)...." guess thats what you wanted to hear" said the voice on the other end of the phone!!! " No!, not what I wanted to hear, just what I knew I would hear" I said! How ridiculous! anyway, just want to get on with it now and get the right support and education she needs as she is currently out of eduacation and feeling quite low, but official confirmation of her dx seems to be raising many more questions than before and just wondered if any of you guys have any advice? .I know that a copy of the ADOS report will be sent to her old mainstream school( she is on a managed transfer to a special school/unit, but wiil they also send a copy to the LA even though the stag meeting regarding her statement has already taken place and, if so, is it likely to speed up the process? .Is there anywhere else other than CAMHS? my experience with their involvement has so far not all been a positive one and also they do nothing more than talk to her, which is fine, but they have already told me that they don't provide CBT and have not recommended anything specific to her ASD? Surely there is something somewhere? .Whilst the subject of aspergers and ASD have been lightly approached with DD, she has asked little of me and I have not gone into too much detail so far as there has been this question mark hanging over her DX, though I never had any doubt,and also because she becomes easily irritated if you talk about things that she's not interested in, and I think thats the key...she isn't interested. I asked her how she felt about the DX and she said she cared neither one way or the other. I know that she is only 15 and this is all quite new but I suppose I thought that it would help to provide answers for her the way it has for us!? I hope that she will become more accepting as she gets older as right now she seems to push away those who want to help her and any efforts of support offered.....one reason why she is out of eduacation right now. What will happen if her next school have the same problems, even if they are specialised? perhaps there are adults with AS who can identify with how she feels right now? Today's events have provoked many thoughts and feelings, good and bad. I feel we are firmly on the right track but worry about which direction it will take her.....

I have also made this observation with my daughter!! Never mentioned it to anyone other than my husband, and wondered if it was linked to her AS....doesn't seem to be though as I have never read any reference to it! Odd though!

ahh! Thats interesting, and very true...the stories she writes on the computer with her friend are always the same sort of thing and based on her obsession.....she didn't really tell them this though. judging by your experience, they should interpret this in the same way they did for your DD, however, they did comment that that the results may be affected by the fact that not all tasks were completed? time will tell....