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lisa1970

Diagnosis for mum help daughter???

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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

 

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Maybe a list of your "quirks" will make your daughters' look less severe, by comparison, and therefore hinder her getting her dx. (I got my dx more than a year after my son got his - I didn't even think about it before.)

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I am not sure on this one. I know with both my sons the assessment was focused on their needs, struggles etc rather than mine. Though they did ask if I suspected anyone in my family having Autism, I said no but did mention my older brother having Adhd and some mild learning difficulties and my other brother had a recent dx of bipolar. However I have recently started looking into my own issues more.

 

I started uni 3 years ago(mature student- 27 at the time) I took a year out in between due to Sam's problems at school. What I noticed is the comment of poor communication keep coming up over and over again.I have failed a practice assessment because of mis-communication and a practical exam 2 weeks ago..again due to lack of communication. I feel sad because each time I have felt that I have communicated well but clearly I have'nt. I do well at written communication and exams but not with verbal/non-verbal communication. I struggled at school, hence the reason why I waited until a bit later in life to go for a degree. I also had OT input from age 4 until age 7 (probably needed more but my parents were paying privatley and couldnt afford it.) From age 9 I also had weekly extra maths lessons as I just could'nt grasp it.

 

I don't remember as much info as what you have listed and I am sure my mum could'nt either. I just don't remember having that many problems that my boys have and I never lashed out or had any meldowns, but maybe its just the way I was raised and I had other outlets like climbing trees. It is hard to understand and sometimes wonder if I would question this if my boys did not have a dx.

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Hi Lisa

 

I have a son who was diagnosed last October, I didn't think he would get the official diagnosis as he is mild and it is not always apparent to others. A paediatrician had meet my son and said there was nothing wrong with him, he couldn't see anything, though he did refer him on for a full assessment (so he clearly did see something!). Anyway my point is that I got diagnosed earlier in the year as I thought it would provide extra evidence that ASD is in the family and I do feel this influenced the decision to assess my son fully and possibly lead to his diagnosis. From reading your description of your traits I would recognise quite a lot of myself in there (eating noises, food, communication, friendship difficulties), I think you would be able to get a diagnosis. However I think you need to have difficulties in your own life before they will diagnosis- mental health problems etc not sure on that one. I went private -£500. I don't know if CAHMS would take the time to read your list but they would have to acknowledge a diagnosis. So maybe that would help your daughter, it is really important that she can understand who she is and the cause of her difficulties and it would allow for support to be put in place.

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Resources for the CAHMS report from the NAS is mentioned below;

 

http://www.autism.org.uk/get-involved/campaign-for-change/learn-more/our-campaigns/past-campaigns/you-need-to-know/resources.aspx

Theres a parent/carer guide on there as well.

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at least can emapthise with your daughter's difficulties /issues and ca relate to her situations and how make her 'think' and feel sometimes when child is assessed and diagnosed can bring up issues /events relating to your past that can make connection too and piece /link together neatly closely if you feel it would positively help you move forward ,give you 'missing answers' for years only you can answer that as it personal decision to chase up if feel it bothering/worrying you that much now your daughter has an ASD diagnosis in black and white from CAMHS! -from what you've described /explained in your long list of issues ,struggles and difficulties certainly pointing in main classic ASD direction and can be passed down from parent to child or have a genetic source/link within family! so isn't impossible for be likely!

 

XKLX

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