Wondering if DD's odd behaviour might be Aspergers - is a diagnosis important and if so how do I investigate?

[Pendulum]

I have found her social behaviour a bit worrying for years now. She is 8 and it's becoming quite noticeable to me that she is 'different' from her peers in a way that I can't put my finger on. She is mainly oblivious to this. However, she seems more or less happy and is doing well in her lessons. So I am wondering whether I need to investigate, in case there is something I can do to help her as she gets older, or whether I should avoid suggesting to her that there is something 'wrong'?

If I'm honest I also wonder whether it would help our relationship if there were an explanation for her unusual behaviour - I spend a lot of time getting frustrated with it although I try hard to put this aside.

bump - anyone?

i think you need to give some examples of the ways in which her behaviour is different from her peers for people to be able to advise...

You do need to be more specific about what behaviours are causing you concern if any replies are going to be useful.
Does this help?

'Some people have asked if their child has AS and then gone on to describe behaviour and sensitivities, so I wondered if this might help.
The following is not meant in any way to be professional advice, I'm just a parent with a teen Aspie, but it might help some individuals decide if they want to explore certain issues a little further or ask for guidance from professionals
It is by no means a complete or exhaustive list, and does not cover co-morbid symptoms that may be attached to AS.
And yes, for all the NTs reading, We know that most children do most of these things at some point.

Main characteristics
Difficulties with social relationships.
Not picking up signals and info that NTs take for granted such as facial expressions, intonation and inferred information.

Difficulties with communication.
May speak fluently but take little notice of reactions, may monologue, may not be aware of audience's feelings or reactions.
May be over-precise, formal or literal in speech. Jokes, metaphors, sayings, figurative language may cause total confusion, stress, meltdowns etc.

Difficulties with social imagination, imaginative play and flexible thinking.
This one causes some confusion as people say 'Well, he plays with his lego and makes up stories and has imagination, so...?'
It's the social aspect of imaginative play that can cause difficulties. If the child is in total control of their 'world' and setting the agenda, then they are being imaginative. AS children find it difficult to play when other individuals are involved that have different ideas or who don't perform as expected, unlike a lego or toy figure.
Abstract thinking is another area of difficulty, although the child may learn facts and figures easily, dealing with abstract concepts, without clear outcomes may be a challenge. Subjects like literature, religion and philosophy.

They may also be:
socially awkward and clumsy in social relationships with others
naive and gullible, a good rule of thumb is that many Aspies function at an emotional age 2/3 that of their chronological age.
unaware of how others feel
unable to carry on a 'give and take' conversation
upset by any change in routines and transitions, often undetectable to NTs
literal in speech and understanding
overly sensitive to lights, noise, odours, tastes and tactile sensations again often undetectable by NTs
have fixed interests or obsessions
physically awkward in sports, often those that require simultaneous application of different skills.
Not a team player in any sense.
Possibly
have an unusually accurate memory for details
sleeping or eating issues that cause problems
trouble understanding and processing things they have heard or read
Inappropriate facial expressions or body language
unusual speech patterns, repetative or irrelevant remarks
stilted, formal speech
overly loud, high or monotonous voice
stims that may involve rocking, fidgeting, joint cracking, humming, pacing...

Thanks- I wanted to find out if anyone was about before giving more details .

That list is very helpful FallenCaryatid. I recognise quite a lot of behaviours on there. In particular:

• monologuing, loud voice, unaware when to be quiet, difficulty holding a proper conversation. She has no problem with eye contact but will approach more or less anyone and tell them whatever random fact happens to be in her head. She often riffs on a topic that she is thinking about for long periods of time, asking lots of questions involving changing the parameters slightly every time "So if...and then what if...." The non-stop talking sessions are interspersed by her 'private periods' see below;

• playing: she plays long secret games in her room with lots of toy animals. I'm not allowed to join in or even know what the game is. She won't play with her sister or other friends because they don't understand the 'rules'.

• She is physically a bit clumsy and unco-ordinated - not excessively so but she has only just learned to ride a bike, for example. Her movements are often impulsive (grabbing, barging up the stairs etc) and she seems to have a poor perception of the physical space she occupies in relation to others - she is often 'in people's way'

• Rages when crossed, although only with me and DH and usually at home. She has never responded to sanctions or incentives in any way.

• She is convinced that every pair of shoes we buy her are uncomfortable and regularly flings them off her feet.

I could go on for quite some time! The thing is that adults often compliment me on having such a smiley, confident and chatty DD, but it has begun to look to me like a role play. She doesn't have any close friends at school but this doesn't really seem to bother her much.

I'd be really interested to get the reaction of those who have experience of this, but am also aware that it's not possible to diagnose remotely, so I guess the main thrust of the question is about if and how I could investigate this further.

Hi, my DS was diagnosed this year. We went down the diagnosis line with the thought that if there was nothing wrong, at least it would put our minds to rest.

If there is something going on like Aspergers, its much better for a child for it to be picked up before they go to secondary school. There's continuity and routine in primary school so they can cope a lot better there than secondary.

First steps are to make a list of your concerns and go and see your GP for a referral. You could also talk to the school to see if there is any chance of them seeing the Ed Psych who can assess her in school.

Let me know if you want any more info.

Thanks babyheaves. How old is your DS? Has it been helpful to understand what underlies his behaviour patterns? And were you given practical advice for helping him? Hope you don't mind all the questions!

She does sound quite quirky pendulum, does she find social stuff at school difficult or does she just avoid it.

My Dd shys away from NT girls because she cant keep up with their social rules and the way their conversations jump from topic to topic.

She likes conversations to go her way and people to follow her rules.

We decided to go down the DX route because her needs werent being met at school [she has moved now] and because we were very worried about how she would cope at secondary school.

I would make some notes and start a diary of her quirks record what things bother her/ cause behaviour issues and how you deal with them, this shows that you are being consistent if you do decide to go for a referral.

FWIW we were told to treat Dd3 as if she did have AS as the strategies can help any child and can certainly do no harm. It was the best bit of advice we received and we started using lots of visual cues for her such as a visual timetable for getting ready for school. It really helped and took alot of stress out of every morning.

Good luck whatever you decide

Thanks Ineedalife, I like the diary idea, will start that. I wouldn't say she avoids social stuff but when I have watched her in those situations she just doesn't quite look 'right' to me. Eg at a disco she will chase other girls around, at first they find it funny and join in but she wants to keep going much longer than they do and they end up getting annoyed with her.

Your reference to morning routine made me smile, that is a particular flashpoint for us. Every morning I send her upstairs to get dressed and if I do not go and literally stand over her I will find her sitting in her pants reading a book with 30 seconds to go before we leave the house.

Oh yes that is what dd3 used to be like.

When we introduced the timetable it made a huge difference. Within a couple of weeks she was able to get herself ready independently, including, tuck money, bag packed and teeth brushed.

I wasnt sure she would go for it at first but actually she loves the independence and I love not listening to my own voice every single day over and over again

Dd1 is 8 with AS, we have the same problem with shoes (its so frustrating and now she wears a brand of boys trainers, when she grows out of them i have to replace them with the same shoe in the next size up).
Dd1 was diagnosed at the age of 4, i think we did the right thing by getting a dx as we now have a reason for the way she is and people (the school) can be more understanding. Most of what you describe above is just like my dd1.

Hothead what's PDA?

Thanks, this is all very useful. Stupid question perhaps - did you take your DC to the GP for the initial discussion or go on your own? I think DD would find it difficult to understand why we were going to the doctors and this might make her very anxious.

Hi pendulum- I was right where you are now with my DSD a year ago.

We have started an ASD assessment with CAMHS at the beginning of 2012. We're right in the middle of it now.

I would echo what was said above about Listing your concerns. Be honest and list the things that you find unusual before you approach a Developmental Paed or your CAMHS teams, if they are have an ASD Clinic. This will give you a base to work from and something to start the discussion.

From what I read in your description; there is rigidity in thoughts & play (need for control, going on about a subject), sensory issues (shoes) and an awkwardness with social interaction. That would be enough for me to warrant an assessment.

Since your DD in now 8 and secondary school is looming, I personally, would seek an assessment. We always brushed off DSDs quirks until she started secondary school, she then pretty much fell apart when all the rules had changed and had a very tough time adapting to the new routines etc. Girls take longer and are harder to diagnose so if you are worried, by all means do investigate it.

Don't be afraid to read on the subject, I've already adopted ASD strategies as ineedalife mentioned and we have had success with them. Tony Attwood is excellent read as well as Aspergirls by Rudy Simone.

I will quote Tony Attwood as Babyheave did for me when I started questioning about DSD, it was a significant moment for me and I realised our daughter, was different and we owed it to her to explore her quirks and differences, to ensure she would be better understood and get the support she deserves.

"In early childhood, probably long before a diagnostic assessment, a girl who has the characteristics of Asperger's syndrome will begin to know she is different to other girls. She may not identify with or want to play cooperatively with her female peers. Her thoughts can be that the play of other girls is stupid, boring and inexplicable. She may prefer to play alone so that she can play her way. Her interests can be different to other girls, not necessarily in terms of focus, but intensity and quality. For example, she may collect over 50 Barbie dolls and choose not to enact with her friends from the neighbourhood 'Barbie getting married' but arrange the dolls in particular configurations. There can be a determination to organise toys rather than share toys and also not play with toys in conventional ways. She may prefer non-gender specific toys such as Lego and not seek acquisitions related to the latest craze for girls her age to be 'cool' and popular. There can be an aversion to the concept of femininity in wearing the latest fashions or fancy or frilly clothing. The preference can be for practical, comfortable clothing with lots of pockets. While boys with Asperger's syndrome can fixate on facts, and some girls with Asperger's syndrome can also have an encyclopaedic knowledge of specific topics, there can be an intense interest in reading and escaping into fiction, enjoying a fantasy world, creating a new persona, talking to imaginary friends and writing fiction at an early age. Another escape is into the exciting world of nature, having an intuitive understanding of animals, not people. Animals become loyal friends, eager to see and be with you, with her feeing safe from being teased or rejected and appreciated by her animal friends.

There may be single but intense friendships with another girl, who may provide guidance for her in social situations, perhaps in a benevolent way and in return, the girl with Asperger's syndrome is not interested in the 'bitchy' behaviour of her peers and is a loyal and helpful friend. Unfortunately, sometimes the girl who has Asperger's syndrome is vulnerable to friendship predators who take advantage of her naivety, social immaturity and longing to have a friend. Inevitably there will be times when she has to engage with other children and she may prefer to play with boys, whose play is more constructive than emotional and adventurous rather than conversational. Many girls and women who have Asperger's syndrome have described to clinicians and in autobiographies how they sometimes think they have a male rather than a female brain, having a greater understanding and appreciation of the interests, thinking and humour of boys. The girl who has Asperger's syndrome can be described as a 'Tom Boy' eager to join in the activities and conversations of boys rather than girls.

Happy to discuss further if you want to PM me and ask questions.

Hope this helps.

Also, have a read on the Special Needs section, lots of ASD parents on there will be more than happy to share their wisdom & experience.

I have no experience of getting a child diagnosed. But what I will say is that I am 25 and will be having my assessment soon. And honestly if my parents had actually noticed how different and miserable I was, and got me assessed as a child, I think my life would've been so much better. Not that it would've made my parents better people (other issues there clearly...) but maybe I wouldn't have spent 20+ years feeling like a total freak.

It is always best to follow up any concerns IMO. Best of luck :)

The Tony Atwood quote is my DD to a T. We are awaiting our first appointment aft being referred through the school.

We have a party tomorrow and DD has decided the dress we have is to long (it isn't) the evening ended with her throwing things a me and refusing to go to bed, its soo tiring, the constant battles and fights with her sisters.

Pen she does a lot of the things you have mentioned about your DD (also 8)
The friendship one is really hard, it's like she doesn't know how to be around other children

fuzzpig, I'm sorry you've had a hard time, that sounds horrible. Good luck with your assessment.

EverybodyKnows thank you, that extract sent shivers down my spine. Much of it rings very, very true. It has all come to a head today because I have spent the whole afternoon with DD and there were a couple of incidents that just opened a door to a new room in my head. One was that she was nearly reduced to tears by an advert for Dominos that said that last deliveries were at 3am , because it didn't say when first deliveries were and so didn't make sense. I had to look the answer up on the internet for her in the end.

I feel I am constantly having to explain the world to her as if to a foreign visitor and it is so mentally tiring.

Pendulum, your last phrase is very telling. Explaining the world. We constantly do that.

DSD is obsessed with Aliens

Have two girls with autism in our house. Research says that most high functioning kids with Asd, are dx between 6-8 years. Anything by Tony Attwood is good, most of his research is on girls. They present differently to boys and we still get comments from people about rare in girls ect ect.

I thought the explaining was just part of having a small child EveryoneKnows, but it goes into a level of detail that I can't believe is usual (and doesn't seem to be required by DD2).

As part of the Dominos conversation i had to explain that

• only the 3am time was mentioned in the ad because that is the bit that they think will impress people the most.
• the advert is intended to make more people go to Dominos than other pizza companies.
• No, that's not unfair, it's the way companies make their money.
• The way you make an advert is... (yada yada 5 minutes)
• If people want to know what time the deliveries start they could phone Dominos or look it up on the internet (as we had to do later).
• The worst thing that would happen if you didn't know is that you might have to wait for your pizza, or go to another place that opened earlier. So nothing to be anxious about.

Sounds like our life
Where ever we go it's:
Who's going, what's their names, how long we going for, how we getting there, what food will we have, how long are we staying, ect ect it's draining but you do get used to it and find myself doing it with other kids

But she is also utterly fabulous and funny and loving and clever and talented. I think she is wonderful and I just want to do what is right for her.

DD(10) is query ASD and scored 2 less than the number you have to score to be dx ASD when she was 7. She fits the bill in many ways but not in others. She is clumsy, hates change (have the same problem with shoes) and is definitely quirky. She has no sense of time and is incredibly frustrating with it and get very obsessed with topics.

She is improving though and learning to cope with things better as she gets older. We found the query dx helpful as it gave us another angle to try and understand her behaviour or why she might find something difficult, without having the 'label'. So it might be helpful to look at techniques for ASD children to use with your DD and just bear it in mind if she's having difficulty at school.

A good book to read is The Unwritten Rules of Friendship which I got off Amazon. If your DD is not picking up the social signals instinctively, she may just have to be taught them. Good luck.

I have a lot of the same concerns about my dd1 (7). The EP has suggested that I might want to get her assessed for Aspergers, but I am a bit resistant. Can anyone who has been through the process maybe help with their responses to my reservations?

She has been assessed by an OT as she is badly coordinated, and I found the process stressful and upsetting as it felt as though I was only ever discussing dd's shortcomings. And in the end I don't really think we got much out of it in terms of practical support. Also the sensory profile was based on a questionnaire that I filled in, and I worried that it was very subjective - I found it very hard to place her responses to various situations on a scale of 1-5 or whatever, as I perhaps don't know how most children react.

I'm worried that if we go through the aspergers assessment process it will be similar - upsetting, based largely on my own opinions of my dd, and ultimately not resulting in any help.

Dd is bright and content at school at the moment, though I do worry about how things may change as she gets older and social situations become more complex. She would not qualify for a Statement, I don't suppose, or need classroom support, so is there a point in assessing?

Sorry for slight thread hijack.

Aranea it's not a hijack at all, I also have reservations about how I would present the process to DD and where a Dx would leave us. I'm going to bed now but will check tomorrow for replies. Thanks everyone, it's been really useful to discuss with you.