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No diagnosis given, 11 year old girl - help and advice please
#1
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. I have also posted on another forum, but hoped for further advice/help.

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 and she doesn’t fit in. From what I have read aspergers in females is different to boys.

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


#2
Hello my my name is Fenn and for a while I thought I had Aspergers i am now 11 years old and found out that I don't have Aspergers my hobbies are dancing (streetdancing) sport and I also have a interest in music, I forgot to tell you that I'm a boy not a girl. If you have any more things to ask me about Aspergers ask me by privet message.
#3
Yes, your daughter is clearly on the Autistic Spectrum from your description of her. In fact, she's like a girl I used to know in school in a lot of ways! What I suggest you do is ask your daughter's teachers to film her over an average school day, then give a copy of the footage to CAMHS. Good luck!
Typically-developing children are often easier to parent than Autistic children because they are always understood and supported just the way they are.
"MMR vaccinations make the Autizms in your guts!" - Andrew Snakefield.
The site I write 'news' articles for.
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