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Would this be appropriate information to show a GP/ed psych/paediatrician?

(17 Posts)
NewYearNewMia Fri 22-Mar-13 19:23:26

Epic post alert - sorry!

I posted about my concerns regarding my DD (10) back in the summer here and got some great advice. I've done a fair bit of reading around AS since then and have gone back and forth in my head about whether to try to get her a diagnosis.

A recent holiday, whilst really enjoyable for us all, kind of highlighted again that DD definitely has some issues. She's certainly not a typical presentation of AS, so I've been baulking at trying to get a diagnosis via the NHS route. She's home educated, btw, as she didn't fit at school and wasn't happy.

I'm trying to decide whether to pursue a diagnosis or not, and if so, whether to ask for a GP referral or go private. Daphne Keen seems to be highly rated on here and we're in the SE so that would work.

I've made a very very long list of my concerns, partly to clarify my thoughts, partly in the hope that DD's dad (my ex) will be convinced enough to pay for a private appt. with Daphne Keen (no way whatsoever that DP and I can afford it), also so that I've got something to give the GP/consultant. So... thanks for making it this far... do you think that this is ok? Too much info? Too little? Irrelevant?

- Talks and talks. Then talks some more. Almost always about her current obsession, with a few stock subjects to fall back on. Will always try to steer the conversation around to these.
- Lack of awareness of social cues. Doesn't seem to be able or willing to notice when someone is getting bored, irritable or angry. Can't or won't gauge when it is an inappropriate moment to start talking.
- Completely derails conversations by interrupting and then changing the subject onto her own interest, usually the same narrow range of topics.
- Lacks awareness of how to approach other children, often seeming a bit eccentric in her behaviour – hissing or making other animal noises. Can appear intense and fierce to other children, and loves playing boisterous games with boys. She frequently seems quite aggressive in the way that she glares at other children, although she very much wants to interact and make friends.
- When at school she frequently got into arguments and got angry with other children – she always felt wronged, or bullied, even when it didn't sound to be like that was the case. She takes offence easily.
- Gets very hyped and excited when playing with other children, usually with an inevitable meltdown at the end when it's time to end. She enjoys being with other children but seems to get overwhelmed. Needs a lot of quiet time on her own to counter this. Used to come out of school very hyped, rude and angry.
- Obsessive interests. Whatever the current interest is, that's all she wants to talk about; even when told bluntly that the person isn't interested or that she's been talking about it too much.
- Tends to dominate social interactions with other children, and dictate the game/conversation. Seems to socialise much better in relation to minecraft though, as there is a common interest and knowledge to be shared.

- She can be very kind and sensitive to others' feelings, especially younger children.
- She is, a lot of the time, very helpful and kind at home, and often sensitive, trying to think of tried and tested solutions if she sees I'm stressed (tea, chocolate or wine, usually!)

Within the family:
- Argues, argues and then argues some more. Can't seem to stop herself answering back, even when she can see the other person is getting angry.
- Extremely pedantic. Often doesn't understand why an excess of this annoys other people.
- Gets very angry about small things, then some time later feels guilty and is excessively affectionate, needing lots of reassurance.
- Finds transitioning activities very stressful – resists going out, stopping playing/reading, dressing, coming off computer, getting up when we've been sitting in bed etc.
- Has a strong need to be in control of everything. Hates being told what to do. Hates being told or shown how to do something – wants to do everything her own way. Most uttered phrase is 'I know!!'. She's quite competitive, too.
- Constantly queries plans and arrangements. Gets anxious (so the rate of questions goes up) whenever we are going somewhere/doing something.
- Often reluctant to try new experiences, or is enthusiastic but then becomes disillusioned or angry when it isn't exactly what she had expected.

- Very articulate in many ways, with quite an innovative/unusual use of words. Is very verbally skilled at arguing her case. Sounds much older than she is, but this hides a lack of emotional/social understanding. Appears very confident.
- Loves to write fiction but it's quite one-dimensional – purely a stream of consciousness train of events and adventures that don't link to anything. Great description but there's little about the characters' personalities and feelings. Is only willing to write on the same themes, reluctant to try anything new.
- Gets very stressed and angry when she can't understand something.
- Muddled thinking when it comes to maths – finds it very hard to think in a stepwise, logical way. Very often does things back to front. Has difficulty grasping and especially retaining concepts.

Has remarkable recall for facts when something interests her.
Very fast and competent reader, although it's clear that she sometimes hasn't understood the concept/plot.

- Strange gait – a tiptoe/balls of feet, almost crouching gait when she's excited, accompanied by flexed hands and funny noises. I think she's pretending to be an animal.
- Recently (on holiday) have noticed that she's been walking a bit like this all the time; not putting foot down heel to toe but placing foot down straight onto ball of foot. Feet turned inwards, slightly stooped gait.
- Lacks coordination and finds it very difficult to follow instructions about physical movements (swimming, karate).

She runs well, is strong and has good stamina. She's quite good at hitting a ball, too – the problem seems to be following instructions or copying a movement.

- Reluctance to wash and lack of personal hygiene.
- Reluctance and frequent refusal to get dressed.
- Extreme fussiness about what she wears, based on issues of comfort; protests about wearing anything other than 'seamless' socks, frequent complaints about labels, seams, things being too tight etc. Gets very angry and het up about this.
- Will only reluctantly allow her hair to be tied up, and then it must only be in a ponytail or french plait. She flatly refuses any other style on grounds of comfort (even just doubling the ponytail through to keep it out of the way for the bath).

Verbal and physical repetitions:
- Currently making small throat clearing noise every few minutes.
- Makes tiny fluting noise a lot and seems unaware that she's doing this. These 'tics' change regularly – before that it was very quiet teeth grinding. She can't explain why she does this, just that she feels she has to.
- Makes animal noises to greet other children/family members when she's excited.
- Asks the same questions multiple times, without having seemed to listen to or absorb the answers. These will often be about time and activity – 'what are we doing next' 'when are we doing that' 'how long are we doing that' 'how much longer are we doing this' 'how much time until' etc.
- Compulsively picks spots, scabs etc.
She can seem to at least partially control the repetitive noises when asked.

PolterGooseLaidAChocolateEgg Fri 22-Mar-13 21:11:50

Message withdrawn at poster's request.

NewYearNewMia Sat 23-Mar-13 09:39:02

Thank you Polter, I don't know quite why I keep putting off going to the GP, I just need to bite the bullet and do it. The really scary thing was that while I was writing the list I could see so much of myself in there too - especially when I was younger.

PolterGooseLaidAChocolateEgg Sat 23-Mar-13 09:51:51

Message withdrawn at poster's request.

Dinkysmummy Sat 23-Mar-13 10:40:25

I would go to GP

There is a book called aspergers in pink... It's a lovely book and well worth reading!

hope all goes well

NewYearNewMia Sat 23-Mar-13 13:31:00

Thanks to both of you flowers

I haven't read either of those, but I have read Aspergers by Tony Attwood, which was very informative, and Freaks, Geeks and Aspergers. I've just ordered another Attwood book from the library, but unfortunately they don't have his one about girls, nor either of the two you recommend by Rudy Simone. I'll probably buy them.

My issue is always that she fits some aspects completely, but others not at all. So I run myself round in circles, thinking that they wouldn't pick it up anyway because she can seem so 'normal', and is often sensitive and mature with a vivid imagination. I guess I just have to hope that I get a referral to someone who has experience in diagnosing girls. Whenever I do the online tests for her, she's borderline, so it certainly isn't a clear cut case.

I just need to get on and do it, I know that. smile

PolterGooseLaidAChocolateEgg Sat 23-Mar-13 13:37:52

Message withdrawn at poster's request.

KeepOnKeepingOn1 Sat 23-Mar-13 13:47:34

Have a look at the CAST screening questionnaire and cut and paste so that your notes provide additional information to yes/no questions (can't link as on phone)

NewYearNewMia Sat 23-Mar-13 14:44:07

Thanks again Polter. A diagnosis would also help me understand her and how I can help her more. I wish I could be more patient with her quirks - she's a fantastic kid and sometimes (often) I feel as though I'm failing her. sad

Thanks for that Keepon, I haven't seen that one before. I've done as you suggested.

I know that this is really long, but this illustrates the issue I always have when I do these tests - so many of the answers are a yes/no BUT...

If anyone can be arsed to read all this, here is that test as I've done it.

1. Does s/he join in playing games with others easily?
As long as she can either be in charge of the game, or if it's a chasing, 'battling' sort of game. Or Minecraft!

2. Does s/he come up to you spontaneously for a chat?

3. Was s/he speaking by 2 years old?
She had around 3 intelligible words by 2 years old. Would gabble in her own language.

4. Does s/he enjoy sports?
But finds it difficult (or is just unwilling) to follow instructions.

5. Is it important for him/her to fit in with a peer group?
But is not really willing to modify her behaviour to do so.

6. Does s/he appear to notice unusual details that others miss?

7. Does s/he tend to take things literally?

8. When s/he was 3 years old, did s/he spend a lot of time pretending (e.g., play-acting being a super-hero, or holding teddy's tea parties?
Not pretending to be someone, but imaginative play with her trains/toy animals.

9. Does s/he like to do the same things over and overagain, in the same way all the time?
Very much so.

10. Does s/he find it easy to interact with other children?
If they are willing to let her lead, or if there's minecraft involved.

11. Can s/he keep a two-way conversation going?
As long as she can steer it.

12. Can s/he read appropriately for his/her age?
Very fast and competent reader.

13. Does s/he mostly have the same interests as his/her peers?
Because all the boys she knows are also obsessed with Minecraft. At other times/when she's obsessed with other things, then No.

14. Does s/he have an interest that which takes up so much time that s/he does little else?

15. Does s/he have friends, rather than just acquaintances?

16. Does s/he often bring things to show you that interest s/he?

17. Does s/he enjoy joking around?
But it has taken her a long time to start to understand and join in with irony or sarcasm.

18. Does s/he have difficulty understanding the rules for polite behavior?

19. Does s/he have an unusual memory for details?

20. Is his/her voice unusual (e.g., overly adult, flat, or very monotonous?
She sounds much older and mature than she is, due to her tone, vocabulary and choice of words.

21. Are people important to him/her?

22. Can s/he dress him/herself?

But loathes getting washed and dressed, and it is often still quicker and easier to wash and dress her.

23. Is s/he good at turn-taking in conversation?

24. Does s/he play imaginatively with other children, and engage in role-play?
But this is often prescriptive, with her directing or trying to control things.

25. Does s/he do or say things that are tactless or socially inappropriate?

26. Can s/he count to 50 without leaving out any numbers?

27. Does s/he make normal eye-contact?
Although sometimes has to be prompted.

28. Does s/he have any unusual and repetitive movements?
Some verbal tics, usually little noises made in mouth or throat.

29. Is his/her social behavior very one-sided and always on his or her terms?

30. Does your child sometimes say "you" or "s/he" when s/he means to say "I"?

31. Does s/he prefer imaginative activities such as play-acting or story-telling, rather than numbers or a list of facts?

32. Does s/he sometimes lose the listener because of not explaining what s/he is talking about?

33. Can s/he ride a bicycle (even if with stabilizers)?

34. Does s/he try to impose routines on him/herself, or on others, in such a way that it causes problems?

35. Does s/he care about how s/he is perceived by the rest of the group?
No (sometimes, yes, but mainly no)

36. Does s/he often turn conversations to his/her favorite subject rather than following what the other person wants to talk about?
Very very much so.

37. Does s/he have odd or unusual phrases?
Often uses words in an unusual way.

Handywoman Sat 23-Mar-13 17:17:44

I don't find these questionnaires particularly helpful, tbh. What do school teachers think about how she is? Good luck with GP.

NewYearNewMia Sat 23-Mar-13 19:18:27

Thank you Handy, I'm going to make an appt on Monday. [determined now]

I took DD out of school about 18 months ago, as she wasn't happy.

NewYearNewMia Sat 23-Mar-13 19:18:59

Yes I find the questionnaires quite confusing!

PolterGooseLaidAChocolateEgg Sat 23-Mar-13 20:25:02

Message withdrawn at poster's request.

NewYearNewMia Sat 23-Mar-13 21:07:00

Thanks Polter, I read that earlier when there were just a couple of replies, and marked it in my head as one to watch closely! Will go and read it now.

NewYearNewMia Tue 26-Mar-13 14:23:34

Quick update. I went to the gp today with that list of concerns and asked to be referred to our local CDC (child development centre). He looked appalled at the idea that I home educate her, but he says that he'll refer me and asked to keep the list of concerns to forward along with the letter.

I feel a bit wobbly now!

PolterGooseLaidAChocolateEgg Tue 26-Mar-13 14:43:23

Message withdrawn at poster's request.

NewYearNewMia Tue 26-Mar-13 15:32:12

Thanks so much all your advice and support polter, it is much appreciated. smile flowers

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