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is this the place to ask questions about how to support teenage daughter who may or may not have autism?

(50 Posts)
Mitchy1nge Thu 03-Apr-14 11:12:30

although I find it almost impossible to organise my thoughts into separate questions confused

she will be 15 next month, it has been quite a long time since she attended school properly (since December we've built up to 1.5 hours a week in a separate room, it's not good) although she is having some private tuition separately it's all a huge struggle, everything is, it seemed to come from nowhere but of course it's just things that seemed minor or assumed to be transient phases have hardened or worsened

we (her dad and I, we live separately) resisted referrals to CAMHS a year or more ago because she's grown up with my bipolar and hospitalisations and her sister's anorexia and hospitalisations and has a bit of a horror of illness and mental illness, so we were mindful of the harms that could come from pathologising what might be just a difficult patch - generally it is a good rule of thumb isn't it, have as little to do with psychiatrists as possible - or we just couldn't face any more family therapy

so things got worse and worse and worse to the point where she is extremely limited in what she can do and where she can go, she particularly doesn't want people her own age to see her, and she sets up strange impossible dilemmas that make no sense - where she must do action A (say, put a birthday card through someone's door) but she can't because condition B is not met (her blue top is not dry) and neither of these things are amenable to any sort of modification - the birthday greeting can't be delivered any other way, the top can't be substituted. it's exasperating. so eventually we did go crawling to what's left of CAMHS here and they very quickly raised the topic of autism (because she doesn't make eye contact with people she doesn't know, but there can be a lot of other reasons for that) and so far that remains their formulation of her difficulties, although it's not a confirmed diagnosis, and that she additionally or as a result has a significantly low mood and severe anxiety

I think, I'm sorry this is so long, that what I would most welcome advice on is:

1. what should or rather could we do about school and GCSEs? she's always been in the 'more able pupil' or gifted and talented schemes and her head of year said at the last TAC meeting 'how can she have autism when she's so bright' hmm
2. we have so far resisted talk of medication, but I'd be interested to hear of other parents' experiences with and thoughts about its role in reducing anxiety, improving mood and appetite.
3. differential - what else might it be, what other things might we want to try ruling out first before I immerse myself any further in Project Learn About Autism?

thank you for anyone that has read so far and has anything helpful to say, I appreciate it flowers

Mitchy1nge Thu 03-Apr-14 11:34:00

my question about what-to-do-about-school is because although the EWO has been very supportive and long since dropped any talk of prosecution apparently we need a diagnosis and or some sort of medical exemption before the school can send work home or we could access any kind of special educational provision (am not sure what would be applicable and I realise statementing is being or has been phased out) - do you know if this is true, generally? it doesn't seem like a good enough reason to speed up the assessment process and possibly lose sight of what other things might be going on

PolterGoose Thu 03-Apr-14 11:51:21

I'm supposed to be studying so will try to be brief.

IPSEA are really good for school SEN legal stuff, entitlements etc, they do a call back phone help thing.

Have you considered Internet schools, InterHigh and BriteSchool are the 2 main contenders in the UK, both sound fantastic and are my 2nd choice if we have issues at secondary with my ds. In a lot of ways I'd have it as first choice but ds is less keen!

Have you considered OCD? It's a common co-morbid with ASD and she could have it alone or both? The ritual stuff rings OCD bells for me (but I am not an expert, just a parent who reads a lot and spends too much time on here blush)

With her complex background and clearly complex needs I think I would be pushing for referral to one of the specialist units, I've heard good stuff about the Maudsley but other MNSNers are more knowledgeable than me.

Mitchy1nge Thu 03-Apr-14 12:39:38

thank you polter, have passed the IPSEA link on to her dad (he loves that sort of thing)

that is such a depressing thought that has only begun to sink in recently, that it might not be an either affective or autistic disorder but could be both - and same with the anxiety disorders like OCD confused

it could still be just a phase though!

Mitchy1nge Thu 03-Apr-14 12:41:51

we haven't looked at internet schools no, so thank you, although it was raised at our last meeting my daughter is adamant that she couldn't possibly work at home because it's not tidy/big/modern enough

PolterGoose Thu 03-Apr-14 19:15:32

grin at 'not tidy/big/modern enough'

Of course it could be a phase, but I would still recommend pursuing every avenue.

zzzzz Thu 03-Apr-14 19:39:23

On my phone and rather over stretched this evening but I just wanted to say dd had a fantastic experience at INTERHIGH she is top of the top top set and we put her up a year and she found it challengeing, fun and very safe/low anxiety inducing.

If you do have to go down that route it is not a bad option at all!

mummytime Thu 03-Apr-14 19:42:16

By the way there is a strong link between Anorexia and Autism in girls. Just a thought.

I would go the online school route too.

Mitchy1nge Sat 05-Apr-14 12:12:19

it's good to hear that online school has worked well, it makes me feel very sad though because all she really wants is to Have Friends and go to school normally

but in all seriousness she is adamant that she can't work from home for hundreds of reasons, we are paying a tutor for her to see once or twice a week at the tutor's house but she quite often can't do that, I spend my life negotiating with her. Maybe she needs a more spineful parent who will tell her what is expected of her and not brook any dissent, but it's hard when someone is genuinely very anxious rather than just - I don't know.

I suppose the diagnosis of an autistic disorder will depend largely upon whether these social difficulties have always been there and have worsened to this sort of barely functioning point or whether it is a new and different problem? we have a three tier system here and by middle school I was starting threads on here about pros/cons of home education.

Whether they rule it in or out I don't see why they can't start treating the symptoms she has now, we are still waiting for individual CBT, it's been a few weeks. We can't go private without assembling our own whole team and joining them up, at least the psychologist and psychiatrist and nurse all liaise with one another at the moment, and we can't go out of area to speed things up because, commissioning.

Mitchy1nge Sat 05-Apr-14 12:14:03

just wanted to get stuff off my chest sorry

HoleySocksBatman Sat 05-Apr-14 14:24:13

Have you heard of PDA?

Mitchy1nge Mon 07-Apr-14 11:08:47

no, but thank you, I've found it interesting to read about although it doesn't feel like an amazingly good fit so far

we need the psychiatrist to make some sort of diagnosis, according to the school and EWO, in order to access alternative or special educational provision - even just having work sent home, but he could just give us a rubbish umbrella type label for now

everything feels very difficult sad

Lancelottie Mon 07-Apr-14 11:15:31

It does sound ludicrously similar to my eldest boy (who has ASD and OCD, and just possibly anorexia). The 'unable to post birthday card because blue top is damp' scenario is played out in this house many, many mornings over showers, style of breakfast cereal and precise texture of shirt label.

Sadly I doubt that 'extra spine' will do the job if that's the case.

Mitchy1nge Mon 07-Apr-14 11:28:11

ahhh I'm not alone although obviously am not pleased your life is also difficult in these areas, just selfishly glad not to be quite so isolated

people, I mean mainly her dad who doesn't live with us, are unable to grasp that there is no way of ever meeting all the conditions - and the food is a great example, the trouble is it can sound so much like 'normal' teenage stuff 'there's nothing to eat' or 'I haven't got anything to wear' - you can spend as much money as you want on food and clothes and make up and whatever else but sooner or later a New Anxiety will pop up and render the whole Project Leave The House For Whatever Reason utterly unworkable

(am particularly touchy because her dad has arranged through her older sibling, and without talking to me about it, to have a regular order of groceries delivered each week to address the 'lack of food'. There is no lack of food! There is always food here! There just isn't ever the food she wants because she doesn't know what she wants!)

Mitchy1nge Mon 07-Apr-14 11:29:46

however it hasn't always been like this, not to this extent anyway, she was just fussy within a sort of normal range before

not that I would know normal but it was certainly more manageable than this

Lancelottie Mon 07-Apr-14 11:33:43

Ah yes, the 'nothing to eat' syndrome... after you've just offered toast, cheese and crackers, sandwiches, banana and branflakes, but there happen not to be Sainsbury's own-brand Rice Crispies and the right sort of spoon.

DS travels to school by taxi. Sometimes. Other times he can be in the doorway and something awful will happen (like, say, the driver looking at him or his sock wrinkling) and Project Leave The House is set back half an hour and involves grumpy parents driving him there.

'Don't pander to him' I hear you say?


Lancelottie Mon 07-Apr-14 11:38:09

On the other hand, I may be rambling, but his younger brother had a very odd patch at 12-13 when the school were firmly convinced that he was also autistic and that we were in denial. Oh, or possibly early signs of bipolar disorder, which runs strongly through our family too.

That time turned out to be a bullying problem (on top of teenage hormones) but the symptoms were very similar.

I do wonder if some families have a sort of 'knife edge' set of near-autism traits that flare up in times of stress but aren't quite permanent, as in full-on diagnosable autism.

Mitchy1nge Mon 07-Apr-14 11:50:21

yes exactly


I remember the 'right sort of spoon' when she was tiny, she would insist on an 'ordun spoon' and cry and cry and cry and nobody knew what it was for ages until we discovered it was a plastic folding spoon that was free with some cereal, she'd used it in someone else's house I think, so had to buy lots of that cereal so we had a few 'ordun spoons' for her to eat with confused perhaps I should have suspected then! she would refuse to eat toast if it wasn't the right colour and evenly toasted all over and anything spread on it had to go right up to the edges and melt in completely, not have any slightly thicker bits anywhere but be a totally even consistency all over . . .

and anyway how do you not 'pander' when they are timed things that you have to be there for? CAMHS are good, they understand and will wait/rearrange or come here but stuff like paid for riding lesson or her private tutor (has missed two terms of school, am not hot housing or whatever but she is very anxious about her GCSEs and the school won't send work home without a medical reason and so far nobody has provided one) I have to pay if we miss and eventually people do lose patience or won't accept bookings, it's often the only way to get her there - to rush out and buy some new socks for example, which she will never ever wear again - and that's not taking into account the fact that you also have places to be and stuff to do and people wondering what it is you do all day!

am starting from a base of being quite an ineffectual sort of parent so I do wonder if it would be easier or harder if I was a more structured person to start with, who had a 'this is what there is for dinner and that's that' approach, am going to try it with the food anyway

Lancelottie Mon 07-Apr-14 11:57:56

I'm with you on the 'slightly ineffectual parent' bit, though my youngest seems to be bringing herself up quite well so far. In fact, I found I was a startlingly effective parent of the right sort of child.

Don't beat yourself up about it must take own advice sometimes

Lancelottie Mon 07-Apr-14 12:00:39

School is a pretty structured, no-nonsense environment, and doesn't seem to have been the answer for your daughter, so extra firmness might not have helped much.

Mitchy1nge Mon 07-Apr-14 12:01:42

I had one of the right sort! It was easy peasy, I wondered what all the fuss was about actually.

have paid for that smugness now!

PolterGoose Mon 07-Apr-14 15:48:34

Mitchy I have a 'conditions must be unattainable met before doing anything' child too. Not always, it ebbs and flows, clearly anxiety related.

Have you seen the book 'The Explosive Child' by Ross Greene? because it's all about parenting inflexible children, it's bloody brilliant and sort of gave me the justification/legitimacy to parent in what looks to many like 'ineffectual pandering' but is what my ds needs. Summary of his approach here as a pdf

Mitchy1nge Mon 07-Apr-14 16:38:43

thank you polter, that sounds very promising - the idea that it's possible to teach more flexible thinking - I've ordered a copy and thanks to the magic of Amazon prime it will be here tomorrow smile

I desperately desperately want her dad and I to agree on an approach we can consistently manage between us because I'm sure it's not good that we disagree on some fundamental things, and if she got a clear message from us both that might help?

PolterGoose Mon 07-Apr-14 16:42:03

I'm sure it would. Ross Greene has a website called Lives in the Balance which is quite apt I think. I love the 'collaborative problem solving' approach he uses (though he's not allowed to use that phrase anymore which is a shame).

Mitchy1nge Mon 07-Apr-14 17:00:05

'collaborative problem solving' sounds familiar

I was working with some parent support person a year or two back during one round of school refusal and she told me off for negotiating with my daughter and for 'problem solving', apparently all my daughter wanted was some time with me and we should get out in the fresh air and do stuff together instead of watching Eastenders, then she would want to go to school hmm Even though we have never watched Eastenders and we spend hours a day doing stuff with our horses together hmm

it was without doubt some of the most shit advice anyone has ever given me

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