Louisa

My mum & I used to have to hold my daughter down to get the eye drops in at the hospital (she didn't have any diagnosis then). The nurses used to assure us it was absolutely necessary she had the drops applied. When I think back I feel so cruel. She also used to struggle getting her eye's tested even at the opticians because of the machine she had to put her head/chin in. x

Hi I have just opened a bank account for my daughter's small amount of DLA to go in to, as she turns 16 on Friday. I wasn't sure this was the right thing to do as she isn't very good with money (she loses it, forgets she even had it etc) but I thought it may help her confidence to have her own bank card & be a bit responsible. Hope we don't live to regret it!! x

Hi Tally If Skye's daughter is anything like mine, she will be on to it, as she has such a strong sense of taste!

Hi Skye Sorry to hear about your daughter being so sick. Glad to hear she is a little better. I’m afraid I haven’t really got any helpful advice but I do sympathise with you. My daughter was exactly the same when she was little. Like you we tried everything but there was absolutely no way she would take medicine in any shape or form, and it was a nightmare, but luckily she didn’t get ill very often. When she was about 14 she needed a tablet (can’t remember what for). It took us about 4 hours but eventually she took it with a drink and now has no problems with medication (still wouldn’t have medicine though). I’m not sure how old your daughter is, but would it be possible to give it to her in tablet form so she wouldn’t have to taste it? Good luck. x

Hi My daughter has been on Fluoxetine (Prozac) for just on a year now. Her diagnosis is social phobia, high anxieties & depression but she has lots of Asperger’s traits and is out of mainstream school. She was nearly 13, nearly 14 when a locum Physciatrist at CAMHS suggested that she try Fluoxetine, but I and the rest of the family were not too happy about it, feeling that it was just masking her symptoms (I don’t feel she has real depression anyway). He told us that he had a daughter around the same age, and if it was his daughter with the same problems, he would not hesitate to treat her with it He also told us that suicidal thoughts could be increased whilst on this drug but this is very rare. Anyway I still wasn’t convinced and said I would think about it. CAMHS then got a new Physciatrist who again said he felt it would benefit my daughter (although I am convinced he didn’t read her notes and just agreed with what the last guy said). She has seen him 3 times since & he never remembers her but tries to pretend to and when asked admits he doesn’t have time to read the notes. Anyway L went on Prozac and it took about two months to have any effect. She has not had any significant side effects but she has been sleeping more than she used to and often feels sick (apart from the usual anxiety sickness). Prior to taking this medication she was unable to go into shops but now can. It has also helped her to be able to attend her school (a school for pupils that can’t handle mainstream school but there are only about 6 pupils there at any one time) but she couldn’t do this previously. So in summary, this medication is definitely no miracle cure; our daughter still cannot socialise & sometimes can’t attend even this school but it has helped her a little and family can see the difference in he confidence levels. Whilst she has been on Fluoxetine, she has been having weekly sessions with the psychologist at CAMHS and has done a bit of CBT but this has been unhelpful as she is so rigid in her negativity and thinking. So in summary, I don’t think it is anything to be afraid of, and it may be worth trying for you son. Good luck and let us know how he gets on. xx

Hi Teresa My daughter has been having CBT (supposedly)with CAMHS for 2 years with two different Psychologists and it has done absolutely nothing. I think it is a mixture of them not being very good and my daughter's negative mind & rigid thinking. I also tried to do some on-line with her but she used to say "mum this really isn't helping" so I gave up. I also asked her to consider Hypnotism but she freaked out! One of them did show her some deep breathing exercises which she said helped a little. x

Hi Lisa I sympathise with you. Our daughter is exactly the same. She is 16 in July and I am at my wits end with her and don’t know what to do for the best. The diagnosis CAMHS have given her is depression and chronic anxiety (I think she has AS). She has very limited social skills, eating issues, high anxieties, sleeping disorder, rigid thinking, extremely low self esteem etc. She has been out of mainstream school since year 9 and after being put on prozac, now attends most mornings at a medical school. She is due to take 7 GCSE’s but has very little motivation to study. She avoids everything that she doesn’t want to or can’t face – and at the moment is doing this by sleeping and listening to her ipod (apart from bedtime – she refuses to go to bed at a normal time and has done so for years). I know what you are going through – mornings are a nightmare in our house, trying to get her up and out of the door every day. Her new rota now is to sleep when she comes home after lunch as she says she doesn’t have to think about things whilst she is asleep. Like your daughter, she has very little interests. She is interested in fashion and music though, and would like to join a drama group but hasn’t got the confidence. Like your daughter, when she was younger she did ballet, dance and tap, judo & swimming but got fed up with these. She should be starting college in September but doesn’t know if she will be able to face it, and doesn’t know what course to take either, and has no close friend who she could start with. I wish I could give you some advice. Does you daughter have any idea what she is going to do re further education etc?

Hi Our daughter went to a summer camp when she was 13 – it was a Do it for Real, which are a national organisation owned by the YHA. Her diagnosis by the way is social phobia, anxieties & depression, but at the time she had no diagnosis and had never been seen by CAMHS. She had just started a new high school as she was very unhappy at her first one, and was invited to this camp by one of her new friends to stay a week and do performing arts. She was very flattered that this girl had picked her, and assured us she wanted to go. Anyway, about 4 days in to the week, we got a call from one of the camp leaders who said that our daughter was not eating and seemed to be surviving on dry bread! They asked what she liked to eat and I told them. When L rang home from the camp the next day, I asked her did she want to come home but she said no, she couldn’t let her friend down. Anyway at the end of the week, when our daughter got back she was devastated and cried her heart out. She said that the friend who she had gone with, had tried to swap rooms with another girl, but the girl didn’t want to. She also said that that they didn’t give her any of the food I told them she liked, as the chef was not prepared to cook any different meals. Just thought I would let you know of our experience. I would recommend if your son goes, that he takes a mobile (the camp advised not to take them). I know 8 is a bit young for a phone but at least he will be able to truthfully tell you how he is. L mostly told us she was fine because there were queues of people behind waiting for the phone who could hear what she said and she is very sensitive. I don’t mean to put you off – it may do your son the world of good, but our daughter’s self esteem was very low before she went & rock bottom when she got back. x

Hi My daughter who is 15 has always been, and is still like this. She too has extreme anxiety & asperger's traits but they said she didn't tick enough boxes. When she was a baby if we were out in a restaurant/cafe she would be gagging in her high chair and customers would be staring at us! If for example, her little brother spills a tiny bit of mash potato on the table she starts to gag & has to have it wiped up immediately. She cant stand anything runny or soggy, her foods cant touch each other and she has to analyse the food before she eats it. She has never grown out of it and is an extremely fussy eater. Sorry this isn't much help. Hopefully somebody will have some advice. Louisa

Hi We went through a similar situation with our (then 14) daughter so I know what you are going through. At the time CAMHS thought she had Asperger?s but hadn?t diagnosed it and we had no statement either. Our daughter wasn?t bullied either, but was highly anxious in school and was treated really badly by the SENCO and the Head of Year, who said it was all an act. She eventually stopped attending. Months down the line, the head teachers got to find out what was going on & they offered to help our daughter in school by letting her have a sort of time out card for when she felt stressed, plus other things, but it was too late by this time, the damage was already done and she has not been back since. She was then referred to an Education Medical Service which is a learning place for children of high school age but it is only part time. It is actually a Pupil Reintegration Service to help build their confidence and then get them slowly back to school, but for children who cant/wont go back, they let them stay, like they have with our daughter. It took my daughter nearly twelve months and to be put on medication for anxiety before she was able to attend there everyday but now that she does, she feels safe and is pretty happy there. She is doing 7 GCSE?s in May/June. There is only about 6 children there and the teachers are really patient and try to boost their self belief and try to deal with their issues, as well as educate them. If you son could get in somewhere like that it may be the ideal solution for now, as the staff would still keep in touch with your son?s high school to get the work etc. It was CAMHS who did the referral for us. Good luck

Thanks Kazzen - As my dd has missed so much schooling, she obviously wont do as well in her GCSE's as she would have done, although she has no learning difficulties. Therefore, she will probably end up having to do the lower/vocational courses. They have said she will get some C's but she had to drop some of her subjects due to there not being the staff to teach. I have contacted Connextions by email, who have advised I go down the route of a Section 140, as Bid mentioned. However, when L was filling in some applications forms at her part time sort of school, the Connextions School Link worker told her to tick 'no' for any disabilities! What is that about? xx

Hi Kathryn Thanks for sharing your experience and knowledge. I have decided to take your advice (and others) and not bother applying for the statement. I was also going to try to push for a diagnosis. as I still feel she has Asperger?s, (see previous posts) but I think CAMHS are just stringing us along, until she will be discharged at 16, so I don?t see there being much benefit now. I will start to visit some FE colleges with my daughter and see what they have to offer. However, she has no idea what courses she wants to take. I am quite worried about the travelling though, as she currently gets taxis to her part time school. There is a college in our town but it isn?t one of the best. I do wonder though whether it would be worth her going there, just because it is near, and she would be able to get home easier if need be? Kathryn I have read your previous post (I don?t post much but I do read others a lot) about how well your daughter has done in her BTec Diploma and it brought tears to my eyes. She is doing really well to stick to her course, and is an inspiration! I am off now to take her shopping whilst the shops are quiet! Since going on Prozac, she is able to go in shops if there are not too many teenagers! x

Hi Thanks for all of your replies and sorry for the delay in replying; both kids have been sick. I think that I will have to see if there is a SEN Careers Advisor we could talk with, or somebody at Connections. It seems though, that unless she has a statement, or is on School Action Plus, then she may not get much help. I am quite confused by it all. Her school, when she was attending, eventually said they would put her on School Action Plus, but then we couldn?t get her back in, so she was referred to where she is now, so presumably that means she is not on it. I will also have to try to speak to the psychiatrist at CAMHS again, to see what he thinks. As for what my daughter wants ? well she says that she really wants to go to college and be able to mix and do well, but she is terrified. The part time place she is at now only have 6 pupils, and she struggles with this. If anybody can give any further input, we would very grateful. Thanks again. L xx

Hi wonder if you could please help. Our 15 year old daughter has been out of high school for 1� years and is now attending an Education Medical part time school. She has no diagnosis except for social phobia and depression, but does have lots of the traits of asperger's. They feel she doesn't tick enough boxes. She is now on prozac. Although she was referred to this part time school over a year ago, she has only recently felt able to attend every day. Anyway her psychiatrist at CAMHS told me, last week, to request that the part time school she is at, apply for a statement for her, and that they will fully support it. When I asked the school, the manager said they could not do this because they are not a proper school, they are just a service, and that her old school would have to initiate this. (Her old school were useless by the way). She also wondered why CAMHS said this, as she feels there would be no benefit at all of her having a statement as she is in year 11 and feels it wouldn't be any use at college (if we could ever get her to go!). Academically she doesn't have any problems but often cant work with other children due to her high anxieties. I am not sure therefore whether to apply for this statement myself (although I tried once before and got knocked back because her high school had not put anything into place, i.e. an IEP etc) but obviously would if it was going to help her. Just wondering if anybody knows much about this please? Many thanks. L x

Thank you all for your replies ? they?re interesting. Katherine I agree with your comments about people with AS being unique etc. I?m not sure whether to push them re diagnosis or just concentrate on getting her helped. As she is out of school anyway now, I?m not sure being diagnosed would have much benefit. I am glad your daughter has come through most of her hard times. Thanks again everyone xx

Hi again Well my daughter saw the new psychiatrist at CAMHS this week. He also thinks that she should take the prozac as there is a good chance it will help her. He said he has a daughter the same age and if it was her he would give it to her. He also said he would ask the ASD team to look again to see if they missed something and he suggests she starts some CBT with a female psychologist whom she might engage with a bit more than the previous one. As for her sleepover ? she loved it!! which was a huge relief because the night before she was saying she wished she could be dead. I am going to try to persuade her to take the prozac and hopefully she might eventually get back into school ? wish us luck. xx

Hi Flora I like that term ?clinically well dressed? ? lol! My daughter is exactly like you, in that she won?t go anywhere unless she thinks she looks ok but her problem is that she won?t listen when people tell her she looks lovely etc and she nearly always thinks she looks a mess. Maybe if people her own age told her she would believe them and have confidence but it is a vicious circle as she wont see them because she feels too ?ugly?. The ironic thing is that she is really pretty. She has so much in common with many people on this forum but like I stated the ASD team said if she had AS, she wouldn?t want to mix with others (and she definitely wouldn?t be self conscious). Louisa xx

Hi This may sound like a strange question but the reason I ask is that my daughter was assessed for aspergers and told although she ticks some boxes, she doesn't tick enough. They said however, that the main reason they don't think she has it is because she is very self conscious and worried about what other people think of her. Also because she would like to mix and be friends with people but just finds it too difficult. I would appreciate your opinions on this please. Thank you.

Thank you for your advice all of you. Daughter has an appointment with a new phychiatrist at CAMHS next week so I will see what he has to say or offer. Hopefully something because she is having no life and no education. She has been seeing a phychologist for a year and has done a little bit of cognative behaviour therapy but it hasn't done anything because she is just so negative about herself. As for the medication she wont take liquid because of the taste (even though she hasn't tasted it!). She has been invited this weekend to a friend's sleepover and out the next day (with girls who she met when she was briefly at high school) and she is terrified and sick with nerves from the minute she wakes and she is having nightmares about it. She's worried too about the meals in case she doesn't like them. Anyway thanks again for your replies and I shall see what they have to say next week.

Daughter Our daughter aged 14, who amongst other things, has high anxieties and school phobia was referred seventeen months ago to CAMHS and we were told by the psychiatrist that she was 100% sure she had mild Aspergers. However after many many months of waiting (seeing a psychologist in between), she was referred to Pathway for Children with Social Communication Difficulties (or something like that!) who have now said (they did the DISCO assessment with me but they only met her for fifteen minutes), that she hasn?t got aspergers but significant anxiety problems. They say all her other issues, like sleeping, eating etc, are just coincidence and that they think she would benefit from medication. Because our daughter couldn?t cope at high school, she was referred to a part time medical education centre but she is currently not attending this either as she cant cope being around some of the other more confident girls there (even though there are only about 5). She will only spend time with people her own age if she is really sure of them and because she is out of school, she is having no life. Anyway the previous Physciatrist left and she saw a locum last week who mentioned ?Avoidance Personality Disorder?. He has given her a prescription for Prozac. He says that she may become a recluse if she doesn?t take it and that hopefully it will turn things around for her & she should be able to live like a normal teenager. He scared the life out of me though when he said one of the side effects could be suicidal thoughts! Anyway everybody in the family and work colleagues etc are saying things like don?t let her take it, it?s a cop out as they don?t know what is up with her and that the particular doctor should be sacked for trying to put a 14 year old on Prozac. I am desperate to help her but don?t know what to do for the best. As for my daughter, she sort of wants to take it but has always been scared of any sort of medication and can?t bring herself to swallow the first tablet. I don?t know whether to encourage her or not. Please give your advice. Thanks & sorry this is so long.

Hi My daughter (14) is exactly the same too. She will not believe absolutely anything good about herself. Every compliment she gets, she says ?I?m not really good at that?, or ?I?m not pretty, they?re just being polite?. She is currently out of school and waiting for a diagnosis but when she used to get really good school reports from her teachers (except the SENCO, but that?s another story), she used to say, for example ?I?m no good at French, they just put the same thing on everyone?s. She has the same sort of comment for every bit of praise she used to get. Like Jay she comes back with a negative for everything and won?t try anything new or go anywhere because of no confidence. All I can say is keep trying with him and try to get him involved in as many things as possible. ? Good luck.

Hi Di We have been having the same problems with our DD. She has just started year 10 (but we cant get her to go back in). The SENCO at her school has refused to believe there is anything wrong with her (we are awaiting diagnosis for aspergers) and has done nothing to help all year. One of her big problems was PE too and she kept hiding in the toilets crying and one day she walked out & turned up at my work! Anyway we had a meeting recently with the school where the Deputy Heads sat in and dismissed what the SENCO was saying (that she was fine), and they have offered us everything we want, including missing PE for her totally. They have also said she can have a mentor and have a time out card for when she is feeling stressed; so schools do seem to be able to choose whether they make them do PE or not. However like I said we cant get her to go back in. She says she is traumatised by school. I think Daniel's school could and should make all the allowances, even without a statement. Good luck. x

Hi I would get the teachers to let him go to the matron as long as she is sympathetic towards him. Maybe he could have some time out and then go back to class but if he is really upset, then she should ring you. We have been going through this refusing to go to school every morning, with our DD for almost a year. We are still waiting for a diagnosis (possible aspergers) and we had a meeting with the school last January but the senco did nothing to help. She just screams at her to get back to her lessons and has done more damage than good. Also nothing was passed to her actual teachers so they knew nothing about her difficulties. The senco is like a broken record, telling us ?she is fine?. Despite having a further meeting with the school recently and them at last offering the help we asked for, the damage has already been done and we cant get her to go back in. She is 14. You really need to sort this out as soon as possible whilst he is still young. Hopefully with Ed Pscych getting involved, things will move forward quickly. Good luck.

Hi everyone I have just read through my above post, which I did quite late last night. I feel as though I have sounded a bit derogatory in the way I have mentioned my DD's good points sounding like she hasn't got Aspergers. I apologise to anybody who has taken offence at this. It was not meant in that way whatsoever. I was just going from different websites and trying to mention symptoms she does/doesn't have. With regards to saying the aspergers may be mild; this came from the phychiatirst at CAMHS who actually said she is 99% sure that she has aspergers but very very mildly. However, after promising us a diagnosis, she has now referred her onto 'Social & Communications Pathway' for further assessment. I am still desperate for any opinions please. Thanks for your replies so far. xx

In your opinion, after looking at the following, would you say my 14 year old daughter has very mild aspergers syndrome? She is currently waiting for a diagnosis. CAMHS have said they think she does but still want to do some further assessments. Social difficulties (social situations cause her very high anxiety) with school, crowds etc. Currently won?t even go in any shop where there are other teenagers. School phobia (out of school at present) Sleeping problems (getting to sleep, staying asleep, then getting up!) Frequent nightmares Lack of common sense Clumsy Very low self esteem/lack of confidence/ painfully shy Limited interests Lack of eye contact (not always) Poor sense of time for her age Heightened sensitivities/ sensory issues - very fussy taste (foods can?t touch each other, only certain brands, nothing soggy etc, very limited diet), sensitive smell, fear of loud noises, wont wear certain textures) Have to prompt & ask her to do things over & over & over before they get done. Average to above average intelligence Great difficulty organising herself Seems to be in her own world at times. Scared to take any medication (melatonin occasionally) Paranoid about how she looks & things she is ugly when she is clearly very pretty) Struggles to record homework from school When she was younger she was scared of everything, eye tests, injections, clowns, sand, grass, loud noises & loud music, fair rides etc. Worries constantly about forthcoming events. Constantly argues with her brother who is seven years younger than her. Has excellent rote memory. Musical ability Sometimes speaks quite formally. Flaps her hair up in the air with her hand (but only at home). Hates PE Suffers from separation anxiety at times. However she also has: Great sense of humour, usually gets jokes as well as making them. Intelligent (academically) doesn?t have & has never had any learning difficulties Caring & has empathy. Very loyal. Interacts with others (when familiar with them) Reached all milestones early/on time (spoke early etc, no delayed motor development) Quiet & good tempered (most of the time!) Affectionate but only when appropriate Doesn?t really take thinks literally Doesn?t have any special obsessive interests. Doesn?t have any unusual facial expressions etc. Not outspoken at all. Only routines she is rigid with are bedtime, when she has to do certain things in her room before she will even contemplate going to bed, no matter what time it is. Any opinions would be helpful. Her diagnosis has taken ten months and she won?t get it for a further four. I keep changing my mind as to whether I think she has it or not. As she is currently out of school, this is causing some friction with certain family members who think she is just ?being naughty?. We know that she isn?t of course but would like to know what her likely diagnosis may be Many thanks.