Here some suggested organisations that offer expert advice on SN.
Possible Aspergers in dd(22 Posts)
This all feels a bit alien to me right now as never even considered it before but long story short, been having huge difficulties in marriage with dh and, in research about his various traits, hit on possible Aspergers. That led me to realising these traits are also strong in dd who is nearly 4. I've felt from a very early age that there was something slightly different about her. I will post an article I read in which she has virtually all the characteristics mentioned.
Anyway my question is, if I see that the social and emotional skills that I am teaching her are sufficient for her to cope at the moment, should I bother getting some kind of assessment? What would the pros/cons be? I've only spoken to a couple of people in RL about this as I think most people will think I'm being a hypochondriac/drama queen but to me it is making things add up.
Here is the article:
Sorry doesn't look like that link worked! Here it is:
Is she in school? If you have concerns I'd probably address them now especially as school could put things into place for her that will make life easier. I have undiagnosed aspergers and was diagnosed as having borderline personality at 24. If it'd have been dealt with earlier life would have been easier x
She is in preschool. Because of all the anxiety that goes with attending preschool I only send her 2 mornings a week so I feel the staff don't know her that well. I asked to speak to her key worker the other day and voiced my concerns but the key worker said they'd noticed nothing of the sort (except for her being a bit of a loner and not liking washing her hands). My dd is a good imitator and I can see that she copes with unknown situations by copying those around her. Without the support of preschool how would I go about getting a diagnosis?
You've confirmed my thoughts by the way - I want to sort this now to remove as many potential difficulties as possible for her.
Usually these sorts of dx are only looked at if the child is struggling in two locations (i.e. Home and preschool). For subtle differences where it is not causing difficulties in two settings, you are unlikely to get any early intervention.
These types of kids (I have one) are usually dx later - around 7/8, when their differences tend to be noticeable in comparison with their peer group.
Does this mean they may have benefited from some early intervention? Well, yes. But it's unlikely there is any on offer for kids who mask well at this point.
You are doing the right thing by being aware of it, but in a way you are hindering dx by taking protective action yourself - the fact that she may struggle more if she used her full hours at nursery would be corroboration that she is struggling in that setting iykwim.
With early-ish dx, it is a bit of a fine line between managing your child's difference and hoping they will learn coping strategies and be able to mature and deal with the usual path, or putting them in a situation they struggle with so that it is obvious they need help (and then they can get it...)
It's a fine line, and obviously the reason that these kids tend to get dx later is that it is not obvious which path they will follow - will they be able to cope if you take it slower and not need any support later? Or will they still struggle later just as they would have if you proved a need for support earlier?
It's a conundrum. Not right. But just saying how it is.
In your shoes I would continue to discuss with nursery, but I would also consider my own actions - is my own protective instinct preventing the need for support being obvious?
Hi my dd is 7 and currently going through the multi agency diagnosis, which is how they do it in this county. The process is painfully slow - it's been nearly a year since I first went to the GP and the decision is not in sight yet. Also my dd went to nursery and was ok, all of the meltdowns, issues and traits appeared clearly once she started school so u may want to increase some of her hours to see how it goes as I know for dd we hadn't suspected anything at all and then within a term at school she was hiding under tables having regular meltdowns and getting into trouble with staff. It still took me a year of wondering what was wrong before I joined up the dots...so it's good that u have already started considering possibilities.
Thank you so much for replies! Madwoman that is a very good point. Hadn't even realised I was protecting to the point that nobody else could see it.
She does have major difficulties at home but of course there's only my word for that. I think people think I over exaggerate (if only!!) Then when I see my little nephew or friends' meltdowns/reactions I realise I'm not over exaggerating, there is a vast difference.
So things to consider are, putting her in preschool full time in the hope that it gets picked up, and letting her deal with difficult situations without jumping in to help.
Would I start with GP/health visitor?
Well, there's no need to put her in pre-school full time if you don't want to - there's no law saying kids should be in for X hours - and some kids really do need to mature a bit more and do better with extra time at home. It's more of a flag to consider your own actions though - especially if you are keeping her home for issues that pre-school aren't seeing (or aren't recognizing). It's kinda inhumane to be considering putting your kid in a position where you know she will struggle - but until you do, you won't know the extent of the issue iykwim (and even then, it could still potentially be 'explained' by immaturity until it is obvious it isn't, later, iykwim).
Your gp or hv can talk you through how assessments work in your area - but I wouldn't hold out for a fast assessment. There are any number of private practitioners who will be willing to take your money - but until nursery realize there is a problem, it is hard to know what support you think they will implement. And the fact that you have been married for many years to an un-dx man is sort of par for the course. There is not much help available to people whose lives are impacted on a lesser scale - (and frighteningly, not much support in many cases to people whose lives are impacted enormously) and so even a dx at this point would probably leave you doing most of the research and helping her to implement her own coping strategies (which you are doing in any case).
I'm not trying to get you to not pursue this further - just sadly that even a dx would probably mean little support in real terms if pre-school are happy she is coping. A lot of parents do find a dx very helpful, and it does actually allow you to fight for support, as well as do your own research and try different strategies. Do have a chat and discuss with either gp or hv. And keep reading and trying different supports (damned if you do, damned if you don't, really!)
The NAS are reporting that the average length of time to get an ASD diagnosis in the UK is 3 years. My feeling is that the sooner you get referred, the better. Girls who mask are particularly at risk of falling apart later, when it all becomes too hard too sustain. My ds got his diagnosis at 6, after an 18ish month wait from referral, but 3 and a half years since concerns were first raised. School were not supportive and did not provide evidence. I gathered the evidence, like you I read loads and joined the dots.
I would suggest you keep a detailed diary, a way to remember things and to spot patterns and triggers, and also as you read stuff which shines a light on her behaviours and foibles, make notes. If there is behaviour which is only seen at home try and video it, phones are a great way to do this surreptitiously.
Sadly, not all clinicians are very good at identifying ASD is girls, but slowly awareness is rising. I wouldn't wait if I was you, whilst diagnosis might not bring a flurry of services and support, it does help in many other ways.
It might be worth asking GP how long to wait to see a pead is. Here is 16 weeks. If you get on the waiting list. I do know a friend who got a diagnosis within six months from being put on the waiting list. But she was extremely well informed and well connected ( knew who she needed to see, how education and NHS work).
I couldn't even get a referral for my eldest son dispite asking school and GP as both said the other one had to reffer. I didn't chase it up after the first five attempts
Personally I dont recommend waiting for pre school staff to notice something!!
My Dd3 was diagnosed at 9, she was taught to mask very early on by a school that "stood no nonsense" and at 12 she disintegrated and her secondary school still didnt see her Asd!!
Please dont leave it, get on the assessment list, it took 3.5 yrs for Dd3 to be diagnosed.
While you wait, find out if you can self referr for a complex communication assessment or a social communication assessment!
Good luck and trust your guts
Sorry that should have said see if you can self refer to speech and language
Thank you all for responses, given me plenty to think about. I was thinking that if I wait for preschool to notice it might never happen - dd could just step up the masking (I think she has already done that). She's moving up to primary school in September, a lovely nurturing school where I really liked the head. Should I go in ahead of time and tell them the situation?
Good to know all the stuff about girls masking very well and it not being picked up on as much as boys.
I have had my suspicions since she was just a few months old, she has always been so different to her peers and I've always been so much more exhausted and overwhelmed by her behaviour. I had noticed her observing and copying her friends in group situations but didn't know why.
It's a little scary to think that we may not get much support, if any. I just want people around us, school etc to be aware so that appropriate work can be done with her re social situations, making friends etc. I also want relatives to modify their reactions to her behaviour, they're very much of the no nonsense type and while I respect that everyone has their own rules in their home it just doesn't seem appropriate now - can they not see that their approach is literally not making the slightest bit of difference or helping in any way?!
Anyway sorry for the rant. Feeling v out my depths and it's bringing out the tiger mama in me!
Take your time, be kind to yourself and pace yourself!
It would be good if at least your rellies stopped having unreasonable expectations but it could take a while.
If you want to arm yourself with knowledge have a read of some Tony Attwood, [complete guide to aspergers] and there is also a good video of him talking about girls with Asd/aspergers on you tube I will try and link it for you
Take small steps and keep educating those around you to help them understand your Dd's needs.
DD2 now 10 never showed any signs at school that were noticed, but would literally explode at home. I didn't have a clue about ASD in girls then, but it was usually because of wrong socks or knickers. She started self harming (scratching her face) in year 5 because the anxiety of social life and school pressure were too much. Again the school had no concerns as she was bottling it all in. DD eventually self diagnosed after seeing something on telly, my ASD and me or something like that, and it did make lots of sense but I had to go private for a diagnostic since school was not on board and nothing was happening on the NHS. She was assessed and diagnosed recently at the Lorna Wing Centre. For me the main reason I think an ASD diagnostic is important is that she will not be labelled with other mental health crap when she will struggle again. It should also help transition to secondary school as the school we chosen (and got) is supposed to have an outstanding SEN department.
the no nonsense approach was our household take, me first, and I can tell you it never made any difference in DD's annoying behaviours. I feel terribly guilty now about all the times she got punished for things she couldn't help, it's great that you are knowledgeable about ASD already. I wish you good luck
Think this is the uneditted version
Think this is the uneditted version
Thank you so much everyone! Will watch the video and yes I've found the Tony Atwood book and spent an hour in the bookshop yesterday reading (I'm saving up to buy it!)
Cookingwine - wrong socks or knickers is a thing here too. As well as the tiniest spot of wet on clothing (so small I can't even feel it) or seams on socks not perfectly lined up with toes. A lot of time and effort (and tears!) goes into getting her ready for the day.
From what I can gather there are sensory issues, social issues (the observing the peers and trying to copy, feeling different, gravitating towards adults) emotional intensity and huge explosions on a regular basis, pedantic use of language (correct words must be used or you're wrong ie boots not shoes, mug not cup). However absolutely no movement or fine motor difficulties. According to diagnostic list this must be present to diagnose with Aspergers. Is this correct?
Her balance is perfect, she walked early, she does a gym class which she's really good at. It's actually one of her best abilities and she gets really into gym/dance and focuses so well. Just want to know really if it's true that a diagnosis won't be made because of that.
Just re-reading everyone's posts. Will start keeping a log of anything I notice and videoing behaviour only seen at home. Will also get on to go/HV tomorrow. Crazy that it can take 3 years for diagnosis!!
I am getting a strong feeling that I am not going to be believed/taken seriously and will be labeled as crazy mother who thinks there's something wrong with her perfect child. Has this happened to anyone? I've already had comments from other parents saying how wonderfully behaved she is and from preschool about how lovely and helpful she is. They don't believe that the second we walk through our door she falls apart.
I feel for you, DD is a complete angel at school and a nightmare at home (on bad days, thankfully we have way more good days than bad days now). According to LWC it is not uncommon to have 2 opposite pictures from home and school for girls. For us reading everything under the sun about ASD in girls has made a huge difference, even before her official diagnostic, as at least I was not making it worse (as much) anymore. But don't get me wrong, all hell broke lose this morning because of a misplaced hairbrush and uneven straps on a bag and I was not in the mood for that "nonsense" in the spur of a busy Monday morning. But we "debrief" afterwards
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