I suspect DD3 may have mild Aspergers but what should I do?

[NigellasGuest]

She is 14 now and I just have that feeling because she ticks some boxes and there has always been just "something" but when I say outloud what the issues are it just sounds silly. But I want to do what's right for her and feel I should do something but what, I don't know. Feeling confused and wonder if anyone can point me in the right direction. I have done a search on girls and Aspergers but just feel bogged down!

thank you so much Polter -
I have started making notes and the links you provide are very very useful!
What would the next step be? I don't want to rush into anything of course but I'm aware that it is the summer hols now, and DD starts year 10 in September so quite a crucial time but I don't really know what school could do anyway.....
i spoke to the SENCO before the end of term, which was before I suspected aspergers, just to express my concerns that there was "something" although what I do not know.... SENCO said she would speak to DD's teachers but I never heard back. GCSE courses start in just over 5 weeks and I'm already worried becuase I've already been told that a GCSE grade C in maths will be "a big ask" (maths teacher's exact words) for my DD
I don't want to be wasting DD's time having extra maths tuition in order to scrape a GCSE maths pass when she has talents like art and photography which she loves but I guess that's what may have to happen

I haven't spoken to dd about it at this point. I thought I should be surer about this route before broaching it, after all, it's only a hunch from reading stuff on the internet - sounds silly really!

She is not getting any support at school now. She was on the list for additional support at one point, but not now. If there is no interaction she will probably still be ok at school, but it does worry me later on about her social skills etc. She is not academic and will probably scrape the required GCSE's. She's particularly weak in maths but that is a lot to do with confidence I suspect, although it's a bit late now as I've been saying that for about 10 years!

Her difficulties present in that she has a very odd approach to her friends. She has friends and they like her, she is thought of as "cute" and "sweet" although she can be very grumpy and angry away from her friends. She likes her friends but doesn't want to see them very much. Her friends arranged a surprise visit to come and see her on her birthday which I thought was so lovely. DD got wind of it, and went into a meltdown about not wanting to see any friends on her birthday. She got really anxious about it. I had to try and sort out the situation for her but it was quite awful in a way, and I was sad that she didn't want them over (it was only 3 of them popping in for an hour or so to deliver a present.)

After seeing friends, being social etc, she is incredibly grumpy and rude to me and retires to her room for a few hours (I've read about the "social hangover" and it really resonates).

She is very immature for her age in many ways. She can be VERY pedantic. She cannot cope with any kind of praise -seems unable to accept it and gets angry. She doesn't seem to be able to have a normal conversation with us - it's either a monologue on her part (and if we interrupt we are yelled at) or a barrage of strange questions. She did not speak at primary school for 4 years.

Sorry it's turned into a very long post now, I will stop!

in the second paragraph above I meant intervention not interaction

thank you -
and is there any way of getting her assessed privately? I coughed up for a diagnostic dyslexia test for her older sibling - I wonder if there is anything similar for this situation?

I recommend Daphne Keen in Harley Street for a private consultation, Nigella. We took DS1 to see her after CAMHS failed to diagnose him. She could see what they'd missed and gave him a diagnosis of HFA.

It may take a while to get an answer from her. I was very persistent with emails and phone calls, but once the ball was rolling the appointment came though very quickly.

And Dr Keen is lovely - really knows what she's talking about, obviously, but good at putting her patients at ease.

Thank you both! I have googled both doctors and Dr Keen would be better purely from a logistical point of view. I will definitely email - perhaps I should phone as well if I don't hear back soon. It's a difficult time of year with holidays etc.

Could anyone give me advice on broaching this with DD? It would be odd to just randomly take her to be assessed! she seems in denial about lots of things a lot of the time or simply doesn't want to discuss things and I can see her taking it completely the wrong way. I also don't know whether she's heard of the term Aspergers Syndrome and what associations, if any, she has with the term.

I'm going to collect DD from a friend's house soon. this is the first time I have done so since having a bit of a lightbulb moment about AS. So I am going to be super aware of what she's like.

I'm feeling like I'm jumping the gun and labelling her but it does tick some boxes. I don't know whether I'm doing the right thing or meddling. A little knowledge is a dangerous thing etc.

We have an excellent book called "Inside Aspergers, looking out" It gives a really brilliant point of view about the way people with AS see the world. Its not expensive and amazon would deliver it in a few days if you think that is might help you to explain your thinking.

I would definitely talk to her before you take her for an appointment, Dd3 was a lot younger when she was assessed but she used to get really upset at the random appointments we had.

It is easy for me to say that now because she has a diagnosis but in hindsight I think it would have been better if we had at least tried to explain what was going on.

Good luck

Thank you Patience. I downloaded the book you recommend and read it this morning - it was more like a booklet really so I was able to read it very quickly. A lot of the traits it mentions I do not recognise in my DD, especially the sensory issues. The only sensory issue with her is that she absolutely loves to have her upper back massaged while she lies on the bed at bedtime. That kind of flies in the face of everything doesn't it.

Keep a diary of your DD's behaviour, Nigella. Daphne Keen diagnoses through a clinical interview, which means, as well as observing your child herself, she asks pertinent questions to see if your child fits the latest criteria. It's crucial to have examples of relevant behaviour.

My son is also 14 and has had no end of appointments, poor boy. I didn't want to mention Aspergers to him until I was certain, as he has already had to cope with other diagnoses, so I simply said Daphne Keen might be able to find out why he gets so anxious about things. That was enough for him. Could you do a similar thing with your DD? Is there anything about her behaviour that she would like to change? Maybe you could say that this doctor might be able to help her cope better in some way?

Also, the diagnosis will be of High Functioning Autism, if your DD gets one, as the term Aspergers is no longer used in the latest diagnostic criteria (DSM-5), but when Dr Keen said DS fitted the criteria for HFA, I immediately said, "You mean Aspergers?" and she nodded. In her report, the diagnosis is for HFA. I called it Aspergers to DS1 at first, but he must have googled it and he later said to me, "I'm autistic, aren't I?", which took me aback. He seems to have accepted it quite easily.

I really 'get' that feeling you're describing of there being 'something' different in your child. Sometimes DH and I felt like we were going crazy because we could see this 'something' and other people didn't. The point is, you need a trained eye (like Daphne Keen) to see it.

Incidentally, like your DD, my son also does not seem to have obvious sensory issues (although his refusal to wash his hair, cut his nails or visit the hairdressers could be due to this - hard to tell with a teenage boy). The lack of sensory issues doesn't mean your DD DOESN'T have Aspergers. It may be that her difficulties lie in other areas. My son is good at reading expressions, for example, but his severe difficulties in other areas still warranted him a diagnosis.

Don't worry that you are doing the wrong thing and 'meddling'. If it turns out that DD doesn't have Aspergers, at least you can cross that off your list. You may find that the 'something' you suspect is something else, but you are right to trust your instinct that there is a 'something', if you see what I mean. Parents are usually right, in my experience and CAMHS are usually wrong!.

hi, my daughter is 10 and recently saw margo sharp who said she was aspergers. we are seeing daphne keen in September as well. gettinga n appointment with daphne was quite easy as she has a new secretary now who seems pretty good so I didn't have to constantly keep chasing for an appointment. margo commented that if I had taken my dd through the usual camhs route it would have been a very long route to dx as she is a girl and high functioning but margo said it was also very clear to her that my daughter was. seeing daphne is half the cost of margo but I wanted a SALT report as well for other reasons hence why we are seeing both.

Thanks for the explanation, Polter. I thought that Aspergers wasn't going to be used as a diagnostic term anymore, although clearly it would still be used generally as many people identify themselves as Aspergers. You are right about the term HFA in DSM5: I've just checked DS1's diagnosis letter and it actually says 'Autism Spectrum disorder - fulfils full DSM5 criteria', not 'HFA', as I'd thought.

Thinking about the massaging. It could be related to sensory issues!

Many people with sensory issues have proprioception difficulties and deep pressure helps them to know where they are in space. So it could be that she can deal with the touching because the pay off is worth it.

Fwiw, I dont believe that there is such a thing as mild aspergers.

Your Dd may be in a mainstream school but her symptoms probably dont seem mild on a day to day basis.
And the impact on her life both now and later is not mild.

Hope you can find someone to assess her

well, the fact that I used the term "mild Aspergers" just highlights the fact that I am quite ignorant about all this. As I read more about it, I learn more. I've downloaded and read a lot of "Aspergers and Girls" and the first section is particularly resonant. the rest, not so much. ToffeeWhirl thank you for your post - I am starting to keep a diary now. I am hoping to get DD an assessment with Daphne Keen.
DD sits with her siblings watching "funny" programmes on TV and looks stoney faced. They ask her why she's not laughing, and she says "I'm laughing inside." Lots of people at school think she "looks angry" a lot of the time, apparently
Is that an aspergers thing?

Hi
Yes it is
Ds has a " mask like " expression quite often. Even if something makes him smile , he always tries to 'school' his features and rein it in.

thank you for posting that, trout. I often find her inexpressive expression (if that makes sense) infuriating when trying to get her to respond to what someone is saying, e.g., if her ballet teacher says something to her
I'm finding this thread so helpful with everyone's comments etc. and I feel a bit better thinking of others being in a similar situation, it feels like some things are falling into place a little.

Toffee when you said:
Could you do a similar thing with your DD? Is there anything about her behaviour that she would like to change? Maybe you could say that this doctor might be able to help her cope better in some way?
yes that's a good way of tackling it with her - she has already spoken to me about feeling anxious and I can use that to say that we are going to tackle those anxious feelings etc. That gives me a good starting point with her

very interesting - similar to my DD "I'm laughing inside" when asked by siblings if she's not enjoying the comedy on TV.....

Good, Nigella, I'm really glad that idea helped. DS1 was so motivated to find some way of overcoming his anxiety that it helped him cope with the journey and the clinical interview (although he did shut down at the end, curled up and went to sleep on DH's lap, demonstrating nicely that a) it took him a huge amount of energy to cope with social interaction and b) he really wasn't aware that he was behaving inappropriately ). Hopefully, your DD will be motivated in the same way. I think it's also good for her to know that you are trying to help her by booking a doctor's appointment - it shows that you are taking her issues seriously and you want to support her. I know DS1 sometimes didn't realise what was going on behind the scenes, as it were, to support him and it dawned on me (duh!) that it was good for him to know that we were constantly trying to find ways to help, even when nothing seemed to be happening day to day.

DS1 also sometimes gets the more extreme emotions causing a shutdown thing, Polter and Nigella. His doesn't seem to apply to humour, though, and he will laugh uproariously at things he finds funny on telly; but he has shut down when he's overwhelmed by anxiety and it can seem really odd. He shut down completely when we took him on holiday to Spain two years ago (our last holiday abroad because it became too difficult for him after that): he seemed catatonic. He ended up having a whopping meltdown, so it was clearly all that emotion stored up inside him.