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?
Social:
- 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.
But...
- 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.
Educational:
- 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.
But...
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.
Physical:
- 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).
But...
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.
Personal:
- 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.
But...
She can seem to at least partially control the repetitive noises when asked.
