I think my daughter has Aspergers

[runningwithknives]

hi there, I am getting more convinced that my DD 6 (yr 1) has Aspergers.

She is very high-functioning and verbal, and has been suffering with anxiety for the last year (since starting school really), crying everyday, telling me all the good thoughts in her head are scribbled out by something evil, OCD symptoms, won't eat certain food, feels sick all the time, etc. I've always thought the way she plays is very idiosyncractic, but now beginning to see that she doesn't ever actually PLAY with anything, she's always organising, setting up, lining up tiny objects, and things, which get left for days and we can't move them. She can't handle change and panics when she smells or hears something she can't tolerate. She also takes lots of things very literally and only really has one VERY intense friend at school and can't understand it when other children join in and play.

She has an appointment at CAMHS at the end of February for an initial consultation for her anxiety, but my concern is that everyone who've I've voiced my thoughts too have told me in so many words, that I'm being ridiculous (friends/ school teachers etc - she is really bright and doing very well academically) When I mentioned it to the psychotherapist we'll be seeing at CAMHS, she said they wouldn't be looking at that to begin with unless she displays very very obvious signs of autism without even having to look for it ( such as stimming, and language difficulties, which my daughter definitely doesn't have). In the meantime, she is struggling so much at school and I think feels so different from everyone else - I fear I may not get anywhere and end up with a diagnosis of "worrier" as the psychotherapist said.

Does anyone have any advice on this and what I can do to help my daughter go down the right pathway. I feel like this might be relatively common, particularly with high-functioning girls.

Thanks

[LightTripper]

It does sound consistent with Aspergers (though it all just gets called autism now) to me so although obviously it could also be something else it certainly seems worth investigating.

My DD was Dxed at 4 but I didn't see it at all. Her only obvious symptoms were physical (she is hypermobile and was a very late walker - which is common with autism). Her nanny picked it up because she was late to play with rather than alongside other children, and although she had very advanced language in terms of vocabulary she didn't ask for things until very late. She also reversed pronouns maybe a bit later than most kids (so when she first started asking for things she'd say "do you want a drink?" rather than "I want a drink"). Once we started getting into the assessment process they also put quite a lot of weight on her not pointing at things until quite late. DD actually does quite a lot of imaginative play but again I'm told it's somewhat rigid (again, I didn't notice - but I can see now that I am also broadly a "lining up, anxious about change" kind of person so none of this stands out to me).

DD doesn't have obvious stims. She used to tense her legs when she was excited when she was little. Now she jumps if she's really excited but that doesn't really stand out as a lot of 4 year olds still jump when excited. But no hand flapping or finger twirling or rocking or head banging or any of the obvious stims like that. Autism can be really subtle but it sounds like your CAMHS is not very up to speed.

By contrast DS is well behind on language (at nearly 2 only has about 20 words) but is a great communicator (will point to things he wants, will point in his mouth if he is hungry, will shrug his shoulders and put his hands up if he wants to know where something is, etc.) DD never did any of that (but she was my first so I didn't notice its absence).

It is very common for "high functioning" kids (maybe girls in particular) to hold it together very well at school but it's a lot of effort and can mean they are then distressed at home where they can safely express themselves.

A lot of the ways you would parent (and that teachers should teach) should be the same regardless of whether your DD is autistic or has anxiety. Knowing what is coming up, having choices (within acceptable alternatives) so she has a sense of control, will all be helpful either way. Thinking about any sensory issues could also be helpful. Have a look at the Stuart Shanker website (Self Regulation) for some ideas. There is also a free training module on autism on girls on the NAS website that may be helpful (it's just free for the first year - I must get around to doing it myself!) It may also be worth printing off some materials from the NAS website on autism in girls that you could take to the CAMHS appointment with you, along with notes on your observations?

You might also find Tania Marshall's list of signs of Aspergers in pre-school girls resonates - though I suspect if your CAMHS person is unenlightened a "random" article from the internet is not going to help (although you can see she is actually well recognised and respected in Australia), and it may be better to focus on materials from the NHS/NICE/NAS for the CAMHS appointment. taniaannmarshall.wordpress.com/2013/06/22/first-signs-of-asperger-syndrome-in-young-girls-pre-school/

Is a private Dx an option? In terms of NHS, is CAMHS the only route to a diagnosis in your area, or could there be options to get a paediatric referral through your GP?

YouTube and Twitter are also great resources for learning more - many adult autistic women there who can give insight and advice.

You could also try a book called "All my stripes" - about being different (specifically mentions that the character has autism though my DD has read it and doesn't seem to have picked up on the reference), and maybe "Something Else" and "The Wonder" by Faye Hanson (which are more generally about being different). I also like the Sally Potter books on emotions and friendships.

Ideas for ramping down the anxiety: don't try to make her eat things she doesn't want to. Provide different things and praise her if she licks or tastes but no pressure. Don't criticise her play. If she wants to line things up or set scenes that's fine. Try to get involved and flex things just a tiny bit. E.g. will she let you put one character in her scene, or take on board an idea you have for how to play. Use e.g. turn taking board games to practice turn taking. Get books about relationships and friendships (DD has just started to enjoy the "Magic Kitten" series and they have quite a few friendship problems in there that I think could be good to talk about as she gets older). Do a diary (maybe just once or twice a week to start with) where you can talk about the best and worst things that happened that day/week. DD can draw pictures and talk about how things made her feel. You can talk about different things to try when tricky situations come up in the future.

The good news is that if your DD is parented and taught in the right way I don't see any reason why she can't be very happy and successful, and the fact that you are already so tuned into her needs is a brilliant start. Have a look at some people like Invisible i, Sew Many Books, Clodplaye, Connor Ward, The Aspie World on YouTube. There are many more, and yes lots of them have faced a lot of challenges growing up - but we can do so much better for the next generation. These are all brilliant young autistic people who can show you that the future need not be negative with the right understanding and support. Also worth looking up Purple Ella (and her friend Roz in the "autism in company" videos), Rachel Lucas (the author), Laura James (another author) and Sarah Hendrickx (all older autistic women).

Sorry for the essay but your post really resonated with me - I hope it's not too much!

[runningwithknives]

Thanks so much for this information. It all seems very useful and I really appreciate it. To me, all these things are surmountable when the understanding is there from her us as parents, but it's when she's out in the wider world and i am told not to "indulge her worries" or that she's dramatic (even when she refuses to eat all day at school because a knife has contaminated the food with germs) that I worry, which is why I would like some confirmation through a diagnosis. Funnily enough, I have always loved the way she plays - it's so intricate and delicate and so "her" that we've never even thought it's indicative of anything. But now, it all seems so clear. Many thanks again. I will be looking into the links you sent and do some thinking. Good luck with your children too.

[runningwithknives]

ps. Private diagnosis is beyond our means financially unfortunately.

[LightTripper]

I think NAS has a helpline. If CAMHS is not helpful they may also be able to advise on other routes (e.g. if there are ways to access a paediatrician or a second opinion on the NHS) - or they may even be helpful in how to put together persuasive materials for CAMHS?

This is the link to the NAS training module I mentioned. www.autism.org.uk/professionals/training-consultancy/online/women-and-girls.aspx

Best of luck. Feel free to PM me if helpful.

[peadarm]

Our daughter received an ASC/Asperger diagnosis some time ago, when she was at school. She also had/has a very restricted diet and fears change (and is obsessive about routines), but is otherwise different. Everyone is: and I don't think Tania Marshall's characteristics and traits of 'AspienGirls' are generic (I halted at the heading's reference to "bright young girls"; though our daughter does like writing stuff down!).

TBH looking back we are doubtful that getting the diagnosis had any real benefit. There was extra time in assessments. And we put some time into parents support groups, which were basically talking shops for exchanging stories. Over the years she moved from embracing the diagnosis to rejecting it. ASC/high functioning autism remains a 'popular' diagnosis - though it is one hell of a wide spectrum for a single word to cover!

She is now a young adult (23) who has never worked (or received benefit), and still there is no support that's actually useful. For example, support for employability provided by autism organisations seems to consist of support for employers raising awareness rather than actual support for young people looking for work.

It is good that your daughter does well academically, has no speech issues, and has a friend: these are important things, worth treasuring. I hope she is happy in herself too.

[Viewofsaturday]

Hi, if you go to your local authority website and search "local offer" the support services for autism should be listed. With a bit of luck there will be a charity /local parents group who should be helpful in terms of routes to diagnosis.

We had a very straightforward diagnosis process and we're lucky to live in a Borough with fantastic female autism knowledge but we were lucky. We met many others whose girls waited and waited.

We find diagnosis very helpful, although our child is much younger than peadarm's. People are bloody ignorant or interfering and I'm so glad I can just say to myself "she's autistic" in those moments, even if the opportunity to tell others isn't there. It has enabled her to go to a fantastic new special school for kids who can follow the national curriculum but who can't manage mainstream. It also enables her to talk about how some situations don't work for her.

We're a very pro-autism/autism is human 2.0 family, which I know winds people up on here, but for my child, it's the right way. She's different, not wrong. In fact, she's often very very much more right than the neurotypical.

[runningwithknives]

Thank you everyone. This is very helpful. Everyone has a different view of whether diagnosis is useful. I am suspecting that my DD knows she is different from others, which exacerbates her anxiety and I think because of this we would benefit from knowing, in order to help her as well as so she knows herself too. I know what you mean about being more "right" too. She says it how it is, and what she feels, somehow tapping into things around her: the sensitivity that some people with autism have, which can make life difficult, can also be a positive too.