lisa1970

After a long time of re-reading and correcting and adding, first let me apologise for the length of this message - I never do things by half!! My daughter (aged 12) was recently assessed by CAMHS and not given a diagnosis. I do not agree with this as, even though school backed up everything I had observed and added more, because she enjoyed the 1:1 session for an hour with CAMHS they discounted it all. I have asked for a reassessment which is due to happen soon out of area. My question to you all, which I hope you can help with, is about myself in relation to her problems. After mentioning to family and colleagues about my daughter and possible diagnosis, I have had so many comments about myself that I am beginning to wonder if I too would warrant a diagnosis. After researching on the internet I see there is a possible trait for this in families. I am asking this, as I wonder whether to take a list about myself to the appointment or not, as to whether this would help them understand her. If I was to point out my quirkiness would this benefit or hindrance her in receiving her diagnosis?? I purely want a diagnosis for my daughter herself. She is struggling so much with being 'different' and recently being called 'weird' and 'odd', along with the fact that she has no friends and is all alone. It is heartbreaking to have her cry many a night about feeling left out, not fitting in and lonely. She never noticed or cared before (when she was in primary school) but now she is in high school she is starting to notice the difference and she can't think to why it's like that. Even her own brother (aged 8) said to me last week that "she needs help ". When I questioned more he said that she needed help with fashion and makeup and being "cool". He said that "she is embarrassing, running around all the time" and also what she talks about. I too often feel embarrassed for her if anyone calls around as she talks at them, bosses them around or mostly gets on with what she is doing as if they weren't there. She won't ever go and 'call' for another friend but waits for them to come. If they do and she goes out with them and anyone turns up she leaves immediately and comes home, and doesn’t tell the child she was with she is leaving or why. She only cares for others on her own terms, when she can be bothered, otherwise she never misses them or asks for them. I would like a diagnosis so I could explain to her why she is the way she is. IF she was diagnosed I could point her in the direction of groups and forums such as this and she could meet other people like her, that find it difficult in the way she does and she would feel appreciated and not alone. She would realise that it isn't her that is the problem, she is perfect in every way, but it is the other people that don’t understand her that have the problem. Without a diagnosis I am left with just "you're different" or to say nothing, and that doesn’t really explain anything or help her in any way. A real reason for it that she could look up and research (she loves the computer) and understand would help her. However, back to the topic of conversation - about me and my issues and if I should raise these or not to help her get the diagnosis I feel she is warranted…. Younger years Had a book in the car for journeys so I could write down the number plates of every car that passed. Would get annoyed if I missed one. Would study it when I got home hoping I would see the same number plate. When my baby teeth fell my mum said I wouldn’t put them under my pillow but kept them in a jar. Following a house move I lost the jar and therefore never got my tooth fairy money. (I don’t remember this as it was so young but my mum told me) Kept an accident book as a child. If I had an accident I wrote a report on it and got my parents to take photos to add to the book (also sadly lost in the house move). Fell out with friends all the time. Would ask someone to stay for weekend, fall out with them at school and never speak to them for the whole weekend. Did not have a special friend at school. When I was 15 asked an older out of town friend to mine for Christmas. Fell out on day 2 and didn’t speak for the whole fortnight, not even on Christmas day. Liked to play at office and would sit for hours in my dad's study being an 'office worker' by taking the punched hole strips of the old printer paper off and stapling them to make strips. Organising the filing cabinet and tiding up. Would organise my teddies and line them up in my bed. If my dad came in and moved one I would go mad and cry. Bad eye contact. Fussy eater - only ate steak and rice or chicken and rice for 2-3 years. Decided to become a vegetarian at 14. Nobody thought I would do it as I didn’t eat vegetables. Stuck to it defiantly until I became so ill five months later that I was delirious in bed and (according to parents) begged for chicken! Would rearrange my bedroom in the middle of the night or bake cakes. Told by my granddad (age 15) that "I needed help" after he felt my obsession with Russia went too far, with me buying a communist newspaper. (I became interested in Russia aged 9 and would only draw red pictures with CCCP written on them in art (same pic each time), studied facts and figures, refused a holiday to America with my parents (as they were the enemy (America, not my parents)), took Russian lessons, had a large picture of Mikhail Gorbachev on my bedroom wall (that I kissed every night), called my hamster Mikhail). Told by my parents (aged 16) that I needed to see a psychiatrist after slamming my cutlery down and telling my mum loudly that "she was disgusting" in a hotel restaurant because she put fried egg, beans and bacon on the same fork. They spoke to me later to tell me this and said this was the last straw and that I always speak without thinking and they thought it was a problem. Given the nickname "flea" in primary school by a teacher as I was always flying about everywhere in the school. Advanced a year in primary school due to being bored in lessons and advanced. Wouldn’t wear shoes for PE and when forced to I purposely ran into the high jump post and busted my nose to prove my point that I was "rubbish at running in shoes". In nursery my mum said I threw away my shoes and nobody could find them so had to go for a couple of weeks with none, as they couldn’t afford to buy more. Older years No real friends. Have had some in the past but once I FEEL they have crossed me I have never spoken to them again. Deleted their phone number, Facebook, email, etc. Cut all contact and never looked back. However, a long time after breaking the friendship have come to realisation that I was maybe premature in my reaction but still can't back down and reinstate the friendship, as once it is done, it's done and I don’t want to go back. Have often been 'used' by so called friends as too generous and giving, often buying presents and offering to pay for things. When I had my daughter I had to record everything she did. I have records of every food she tried, every word she spoke, every place she went, as well as memories, footprints, handprints, medical details, weights, etc for the first 3 years (until I had a baby that passed away and I stopped). I have kept all her drawings, letters, a daisy chain she made, her notes from nursery about what food she ate, clothes, her umbilical cord, first wet nappy, dummy, etc. When playing a game on the PC I cannot move on until I get gold (level finished in a certain time). I played one level 70 times before I got to gold and moved on (after even going on Google for walkthroughs etc.) There is no prize for this, I just feel that I CAN'T move on without gold. Had problems at work where I've thought they were the problem but then they’ve thought it was me. I've said hello in morning and they say I haven't. Where I feel I make the effort and they feel I don’t. Always told at work about how organised I am, that I am super-human compared to anyone they have ever known, they haven't known anyone like me before. That I think of things or do things before they even think it. Or they ask me to do it and it is done in lighting speed. Eating Have to eat food in a certain order. Cannot have food touching on the plate if it is wet, i.e. beans near other food, or food in a sauce touching rice/chips/potatoes. Don’t like food in squares. Things I made myself overcome Until I was about 15 would not eat in front of strangers. Could not watch other people eating if they mixed things on their fork. Could not have sauce on food, i.e. beans on toast was toast and beans in a separate bowl (still eat like this). Eye contact - could not give it at all. Sandwiches had to be cut in triangles or I wouldn’t eat them unless they were put in new bread and recut. General/related to what I have read about diagnosis No coordination. Like routines and ways of doing things. Have to have my desk a certain way at work. For example, open my computer the same way in the same order, have a 'circuit' to do (i.e. drop cup in kitchen, then photocopy, then drop paperwork in other office, then back to get photocopying, make tea, back to desk). I've always put this down to being a logical thinker and good at time management. Sounds - no whistling or chewing near me. Clicking fingers/pens. Empathy - took a job as a drugs counsellor, following 8 years of personal addiction. Thought I would be really good at it as understood what they were going through. Had no sympathy for them at all, they just annoyed me. Skilled/talented - IT skills self taught and advanced. Member of Mensa. Accepted to university degree for engineering even though didn’t have Physics A Level (required) or even O Level, as passed the physics entrance exam. Advanced a year in primary school. Found exams easy. Detail - this email!!! Lol My complaint to CAMHS (14 pages) Sorry, bored you to death..... could've gone on way longer but cut it short. Help please???? Thank you. xxx

bed32 - the reason for wanting an official diagnosis is firstly to access services and help. As I said, because she hasnt been given one therefore there is no help offered, it is just goodbye. I have requested a statutory assessment and that the school ask the educational psychologist to review her. Another reason I would have liked some sort of 'label' for her difficulties was to help explain her problems to her. To be able to say you're having these difficulties because.... I thought that would have been useful to her in dealing with things like her friends no longer wanting to visit, that she is not achieving the same as everyone else in school, that she finds it difficult in noisy situations, etc. I dont know whether that would actually help her but had assumed it would, as she would be able to think to herself, and perhaps when older even explain to others, I am the way I am because....

Many thanks for your advice. I am just drafting up a complaint letter asking for reassessment. I found out that they havent followed NICE Guidelines either, so thinking of pointing that out too. I feel there is just TOO much for it to be dismissed. Dyspraxia, etc. not looked into. The attitude was .. nothing is wrong as she was fine on the 1:1 assessment, good bye. x

Hi there. I am hoping someone can help with a query about my daughter. Sorry this is so long, but wanted to give a full picture. Instigated by the school at age 6 we went for an ADHD assessment. They said she didn’t have it and recommended an ASC assessment - we never received an appointment. Aged 10 her Year 6 primary teacher said she thought she had "inattentive ADHD" and recommended we went for assessment. After seeing a paediatrician, information from the school and a Connors questionnaire we were referred to CAMHS. CAMHS do a consultation clinic where they first see if you are right for assessment. Our first appointment was four months following the referral in the consultation clinic. Three appointments later the CAMHS practitioner referred us for an assessment. That was in April and the actual assessment was 6 months later in October 2012. Followed by some psychometric tests. I have only just been given the feedback, another five months later. The report they sent me even had the wrong name in four sections! The psychometric tests were not included in the report, that was separate, and they had made their decision based on the assessment day in October. They say that she does not warrant a diagnosis. That’s it, goodbye. No plan of action, no further help, nothing. The assessment only had a clinical psychologist and speech and language therapist in the room with my child. We were in a separate room with another psychologist answering the questions they ask. They did not carry out a school observation or contact high school for information. No OT or specific SLT report was carried out. They said she does not have a diagnosis as she did well in the individual assessment. Although the primary school report had backed up everything I said, and said even more, they said that is discounted as she was okay on the individual assessment. I did point out that obviously with 1:1 attention in a calm, quiet room she would do better, but life isn't lived like that! From everything I have read I think she has aspergers. She fits the profile. I have also read that the diagnostic criteria they use is often too much based on a boys profile, which is different from a girls. They used ICD10 for this assessment. I have another child who is attaining his school levels, has friends, doesn’t display the same behaviours etc, so I would say it wasn’t my parenting skills that were the issue. Does this sound correct to you in your experience of getting assessed? Many thanks for any thoughts/ideas on this, or your experiences/opinion. I am thinking that I should ask for reassessment? Do any of you think she does sound to have problems in the ASC category or am I totally thinking incorrectly? My daughter presents with the following problems (these are just some of them): * Special interest in dogs and everything dog related. Constantly asks for me to buy a dog - but will not touch, stroke, even hold the lead for a real dog. * Special interest in health and safety - creates posters and talks for the family. Asked for a meeting to go over a fire escape plan she had created. * Had friends in primary school, mostly from the year below. Entered high school and has made no friends. Sits alone at lunch and breaks. Previous friends no longer seem interested in visiting. * Problems with self care (only just started brushing her own hair, can't put in a bobble), has to be forced to wash and brush teeth. * Constipation problems - doesn’t seem to have time or forgets to go to toilet, or take medication unless I prompt her * Forgets homework, forgets what she is telling you sometimes half way through a conversation * Attended activity for three years once a week and didn’t know the name of any children there * No eye contact with anyone, even parents, or even on computer on Skype to grandparents will look down * Attention problems - described by teacher as in a world of her own * Still wants to play with babyish toys and to run and skip around * Learning difficulties - despite average IQ has been found to be working four years behind peers in reading and spelling. Also behind in maths. Only topic that excels in is ICT. * Never bothers calling for friends. Likes it if people call for her but won't think to make first contact, or will ask if she can and then forget. * Immature * Fear of being "a teenager" since she was about 9. Still scared to grow up. * Believes in the tooth fairy, even though I told her it wasn’t real (on entering high school). Believes in Santa and the Easter bunny. * Will fix a funny smile on her face sometimes. Rarely will say anything is wrong with her. * Doesn’t understand sarcasm. Quite often has to have saying explained to her. * No interest in fashion, make up, hair. Will throw on any clothes, ones that don’t match, hair unbrushed, teeth unbrushed and want to go out. * Eats with fingers. Will shell each garden pea on plate and split in two before eating. Makes food into parcels. Primary school reported that: *Over imaginative and 'in her own little world', quite frequently talking to herself and making other strange noises. * In assemblies noted some bizarre behaviours for a child of her age * Inattentiveness is the biggest problem, followed by an immaturity not matched by her peers * Likes to share drawings at inappropriate times * Very excitable about things she has done but cannot talk about things learned in lessons * Fiddling in class, not listening or looking up * Gets excitable and jumps up and down waving arms which is noticeable * Starts a conversation and then peters off becoming inaudible unless prompted * Playground friends are few, quite frequently on her own playing out a situation * Cuts in on conversations and talks aloud in class/assembly * Throwing and catching a ball uncoordinated * Writing gets larger with less conversation * Imaginative play interferes with listening and learning * Very worried at a change in routine, e.g. new class * Struggles even on 1:1 basis * Often out of seat and moving around classroom * Always has hold of a comfort object * Tendency to become "fixated" on certain objects resulting in her seeming in a "dream world" * Stroking hair, staring at objects because "they're so beautiful" and stroking a feather for extended periods of time