to ask what it actually means to have Asperger's? frightened mum

(96 Posts)
fabergeegg Tue 06-Aug-13 20:26:34

My little girl has a knowledgeable Homestart worker who has advised that Asperger's may be a possibility, after a disastrous playdate with a child just a month older who was utterly unable to connect with her.

She's almost two and has about ten words but uses them rarely. However she has good comprehension. She's self-contained but has good eye contact - on her terms. She's very, very aloof with other children and will pretend to be asleep rather than have to interact with them. But I've been disabled since having her so she's had very little contact with children her own age. She's incredibly stubborn and has rarely done anything I've asked her to do. The thought of her saying please and thank you is strange, although whether that's because she doesn't want to communicate/obey, I don't know. She relies a lot on inflection and is very conversational in that way. And she builds unusually high towers with bricks. She teases the dog mercilessly, though not unkindly.

I know it's too early to know anything for sure but that's not helping!

Will she be friendless and unhappy? What can I do? Is it my fault?

PeriodFeatures Sun 11-Aug-13 08:22:41

Polter our local paediatricians (or at least two i know of) are not diagnosing Aspergers anymore due to this. I know high functioning Autism in medical terms is just 'autism'... sorry, again unclear! The spectrum is usually explained as far as i'm aware. It has been quite distressing for some parents who have expected an Aspergers Diagnosis and started assessments some time ago. I guess it depends a lot on the Peadiatrician.

I will have a look into this. Thank you.

PolterGoose Sun 11-Aug-13 08:17:26

PeriodFeatures as has been said already, the UK uses the ICD, which still includes Aspergers. HFA does not exist in the latest DSM.

Levantine Sun 11-Aug-13 07:35:19

I thought so!

PeriodFeatures Sun 11-Aug-13 07:33:17

Yes true Levantine. I just know that our local Paediatricians are not diagnosing aspergers anymore and High Functioning ASD is diagnosed instead. Sorry, that wasn't clear posting.

Levantine Sun 11-Aug-13 06:33:04

Period, as perverts being taken out of DSM just means that the diagnosis would be autism not aspergers, not that OP's dd wouldn't get a diagnosis if appropriate.

OP if you, in your gut think there is something to this then I would ask GP for a referral to a developmental paediatrician. It takes ages to go through the diagnostic process (9 months for us from GP to dx), so you will be able to go at your own pace in thinking about this all.

PeriodFeatures Sun 11-Aug-13 04:16:56

Aspergers has been taken out of the DSM this year so she will not get a diagnosis!

Really your HomeStart worker ought not have said that to you. Your DD is 2. She sounds like a wilful 2 year old to me!

What i'd suggest, if you are still querying this, is contacting your local sure start and finding out if there are any parent and toddler groups for families with children with ASD in your area. There are often voluntary organisations that run these and you don't usually have to have a formal diagnosis to go along. Go along and see how you feel/whether it seems to fit, talk to other parents if you feel comfortable. You can also request an assessment by paediatrician. This can take a few years to complete.

I want to say, don't worry at the moment but you are her parent and know her best. I have known plenty of young people with high functioning ASD do really really well and learn to find strategies to cope socially, go on and achieve all sorts of things.

Sparklysilversequins Sun 11-Aug-13 02:28:38

I have two dc with ASD. A boy and a girl.

ASD is very different in girls than boys so I will tell you what I noticed about dd.

Speech delay, no spontaneous or conversational speech by age two and a half.
Didn't play imaginatively with toys, she liked and still likes what she called "collections", grouping toys or just things she liked together e.g shoes, a tea towel etc on the floor or lining them up on her play kitchen. She would lay play food out on plates or her bears but thre was no sense of her "playing a game" iyswim?
Horrific tantrums.
Playing quietly and peacefully in the same room as her dbro but rarely communicating.
VERY clingy to me, no relationships with anyone else, even her Dad and grandparents, that's improved no end now though.

Don't be frightened, it feels scary but in the end it really, really isn't. I promise smile. Stick around on MN loads of parents with dc with ASD on here and it really helped me to accept knowing I wasn't alone.

That said I am in agreement that its pretty young for the things you describe to be put down to ASD and I think your HV has approached this really badly and unprofessionally, even if she has concerns she should not have raised them like this.

You can be shy, or not shy, with Asd or without it, surely?
Shyness/introversion is a personality thing and ASD is a pervasive developmental disorder which can be identified by certain red flags when proper tests are conducted by trained professionals qualified to make a diagnosis.

Which is why people have suggested the little girl is seen by a paediatrician specialising in development, or similarly qualified clinical psychologist.

Because we can't say from reading a post, and even a skilled child care worker can't say, nor a parent - but it is always worth following up concerns because if the DD is on the spectrum or has particular needs, the time to act is now, given the plasticity of the developing brain in the early pre school / toddler years - and this is supported by solid evidence.

Just leaving it and waiting can mean missing a golden window to help a child. And if there's nothing to worry about then peace of mind is valuable too. There really is nothing to lose and much to gain from getting professional advice.

justaboutreadyforbed Sun 11-Aug-13 00:11:57

My two with ASD are very very very sociable.
My one with no diagnosis is the shy one.

Fabsmum Sat 10-Aug-13 22:23:43

Ds was diagnosed with Aspergers at 7 by CAMHS.

But I knew he was on the spectrum at 3. His behaviour and interaction with other children was just so... unusual. He is inflexible and extremely focused. His attention is like a fast flowing stream that will only go in the direction he wills it to.

I'm SO proud of him. He makes me very happy every day and pushes me to the edge of reason, and beyond but I won't go into that here

FanjoForTheMammaries Sat 10-Aug-13 20:11:10

Incidentally, my DD has quite severe autism but would love to mingle with others now, she just doesn't know how to.

Autism and shyness are totally unrelated.

FanjoForTheMammaries Sat 10-Aug-13 20:10:00

The lack of interaction and not wanting to obey of autism are entirely different to shyness.

It is not possible to diagnose either from a description on here.

I could write about my DD and people would say she was just shy.. she isn't.

That's why people are suggesting a referral..just so any problems
which may or may not exist can be picked up and addressed. Not because they are diagnosing online.

OxfordBags Sat 10-Aug-13 19:26:14

Your Dd sounds shy (which you know the reason for - I am a disabled mum too, and my Ds is shy which I think is because we haven't mixed quite as much as we might have), doesn't want to obey (I'm in my 40s and I don't want to obey anyone!), hasn't got loads of words and doesn't say please or thank you.

Well, she sounds like a lovely, normal little toddler - and I mean normal whether that's ASD, Neurotypical or anywhere inbetween. I don't know a single kid of that age who was saying please and thank you, btw. My Ds says it at nearly 2.5 but he doesn't really understand it, he just thinks it's something you tag onto the end of what you're saying.

I have two family members and a friend with Asperger's.one is my younger brother, and you could not have been able to tell at nearly 2, no way. In fact, he's always been annoying extroverted, not shy. Lots of people nowadays are so quick to ignorantly label shyness or not wanting to socialise as Aserger's, when surely there are times when everyone feels shy and doesn't want to be with lots of others. The only difference is, adults and older children get to express if they don't want to mingle, whereas we just plonk tots in with other tots and expect them to enjoy it every time.

Two is young, but as some have said not too young to begin the diagnosis process. It could be that something other than ASD could be flagged up, in which case you'll be getting some valuable advice in how to deal with them.

It could be that she's just going through a developmentally normal 'phase'.

If she does flag up as having ASD or something else, you'll be getting help you need early and it may help a lot with later life.

There's a lot of high functioning autism (both diagnosed and non-diagnosed) in my family. My two sons are (diagnosed) Aspie/HFA. Both have friends, enjoy different activities, do very well at school and will probably have a good life. They love me and show me in lots of ways, and they have a brilliant imagination and a (geeky) sense of humour. Do they have problems? Most definitely! But life is not without problems, and they face them courageously and we find a way to get through and learn.

My cousin (almost definitely an aspie) didn't talk until he was four, and his first words were when he asked what a phrase on a label meant (having taught himself to read). Turns out he just didn't see the point in talking until that point. Fast forward to now, and he has a first class degree from a Russell group uni, a lovely girlfriend, and a job he loves. He has something around 400 (!) friends on Facebook. No, I don't think they're all bosom buddies - but he talks to people and they do like him, with all his quirkiness (maybe - dare I say it - because of it!).

My Dad recognises a lot of himself in them, as does my DH, and if I'm honest, so do I, and we've all had good lives.

I would urge you to be cautious though, because you don't actually have a diagnosis, and tbh a lot of the symptoms you've described could have a number of different causes.

FanjoForTheMammaries Sat 10-Aug-13 19:22:51

I am not automatically anti HV either...one of my best friends is one smile

FanjoForTheMammaries Sat 10-Aug-13 19:21:50

I far more often hear of HVs saying all is well even if it isn't and not referring on than I hear of them referring on so that's probably why I personally would advise asking for referral to paediatrician.

The HV is on the route to referral. I know they (sometimes rightly) get a terrible press on here but all are qualified HCPs with a particular responsibility for child development. It's the appropriate first step for concerns such as the OP's.

FanjoForTheMammaries Sat 10-Aug-13 18:24:43

And HVs are not qualified to assess such things, so we are suggesting referral to paediatrician.

FanjoForTheMammaries Sat 10-Aug-13 18:12:27

People are just concerned that if it was anything significant but the OP was reassured and just waited, she could miss out on the chance of early intervention which is most successful.

Of course noone can diagnose anything on here

FanjoForTheMammaries Sat 10-Aug-13 18:10:59

Well if it is not sinister then no harm in getting checked out surely ?

I'm really uncomfortable with this whole 'red flag' thing tbh. Certain behaviour may or may not be significant. It's surely as useful to hear about that behaviour in a context where the issue resolved as in any other? The OP is seeing her HV about this issue - so professional involvement is in place. I just don't think it's helpful to define (as some posters seem to want to do) certain characteristics as indisputably sinister - because that IS what you imply when you describe something as a 'red flag'.

googlyeyes Sat 10-Aug-13 17:01:20

Dd, sorry

googlyeyes Sat 10-Aug-13 17:00:38

The danger of posting on the main boards is that countless people will tell you not to worry and that two is too young.

It really isn't.

My son's social and communication difficulties were flagged at 15ms and he was diagnosed with autism at 23 months.

This isn't to say that anything is wrong in your ds's case. Just that there are certain red flags that can be apparent long before the age of 2

The mchat test can be administered at 18 months.
It does not 'take time to see'; a trained developmental professional can see signs early and avoid more time being wasted. The 'wait and see DC still v young' approach is not helpful. It wastes crucial time and when they are still very young is when early intervention is most effective.

Losing words IS a red flag.
If investigation shows there is nothing to be concerned about, great.
But don't listen to all the 'wait and see' voices however well-meaning if you have concerns.

The OP's child is very young. It takes time to see exactly what's going on and as I made clear, I have seen behaviour such as she describes, exactly in fact, in my own family at this sort of age with no lasting issues. Or perhaps you'd like to tell me my child is autistic and I haven't noticed? hmm
The OP asked 'I'd appreciate thoughts on how normal it is to get a few words, then stop bothering using them? My DD seems to try a word for as long as she's interested in what it means, then give up on it. So looking at the word list she had a couple of months ago, it's considerably shorter now - yet her comprehension is greater' - that's a good summary of what I wrote in dd's birth to 5 book 13 years ago.

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