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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?

QualityScout Wed 07-Aug-13 08:09:45

I'd cut the lady some slack. Honestly, if your daughter does have asd the earlier intervention starts then the better the outcome. If she doesn't then she'll just have had some fun play sessions - no drawback there as far as i can see.

No they're not supposed to diagnose but she wasn't doing that - you put her on the spot and she responded with honesty and told you it needed investigation. Don't shoot the messenger.

Don't blame yourself (easier said than done i know). And don't be downhearted (ditto). As people say, she's still your daughter. But equally ignore those who say she's fine - they just want the "problem" to go away - unlike that lady they don't have your daughter's best interests at heart.

colettemum3 Wed 07-Aug-13 08:35:53

FanjoForTheMammaries..... How else was i supposed to put it? I had the sneaky suspicion that Aspergers wasn't dx any more but wasn't 100 % sure so didn't mention it.

Like iv'e already mention, iv'e got 2 on the spectrum. My 15dd is lower in the spectrum then my son. Yes she may be taking GCSE's but honestly she hasn't got any common sense at all for example putting boiling water in a plastic pint glass or emptying water out on to the kitchen floor instead of the sink.

My HFA son is a lying little toe rag. For example we have a couple of 'crates' of gatorade for the 15yr old for when she does sports. DS got caught with a bottle and was told that he can only have a bottle when he does boxing. Less then 2 hours later he gets caught drinking another bottle. Or for example that night he was supposed to be in the bath and we hear ask 'can i get out now?' for my husband to walk past his bedroom and see him playing with the lego.

I wasn't happy at the time but now writing this iv'e got a smirk on my face and doing my best not to laugh my head off.

All 3 of them are at times are very happy and at other times they get upset. I don't know what a NT family is like. To me my 3 children are NT.
The poster, if her child does have difficulties is going to grieve for the child that wasn't. She's going to have days of 'what if's'. Have days when she'll be cursing and effing at the medical and educational professionals.

But then her precious daughter will then either smile at her or does something that she hasn't managed to do before and then the poster will be so overcome with joy and love for her child that the what if's will come lesser and less.

FanjoForTheMammaries Wed 07-Aug-13 08:37:27

You are right.

But its not right to talk of AS as a more desirable DX IMO.

NeoMaxiZoomDweebie Wed 07-Aug-13 08:49:59

OP ASKED the HSW if there was any chance of ASD and she said she had suspected it too...she wasn't going about diagnosing things! People are SO fast to try to quash a Mother's fears on here which quite oten come rom instinct and should be ollowed up.

OP....I know the fear of which you speak as my older DD also had some red flags for Autism. She's 9 now and very sociable and happy. As a 2, 3, 4 and 5 year old however she was "odd" and very anti-social. She's bright...some bright kids are a bit borderline with ASD and though my DD doesn't fit the mould enough to get a diagnosis, she's got some characteristics still. But she has loads of friends....don't worry, your DD wil be who she is and she has a good Mother who cares. She'll be fine!

colettemum3 Wed 07-Aug-13 08:52:07

That wasn't what i was going for. It's just that the majority of other posters were talking about Aspergers and HFA and their success stories. I was just trying to say that it's a huge spectrum and at the end of the day it doesn't matter if your child is on the higher or the lower they will still be the same child that they were before the dx. I was just worried that the poster and her husband would google everything about Aspergers and get told something different might crush them. I was just trying to have her be open minded, get her daughter assessed and to cross the dx bridge when it comes to it.

At the moment my 15dd is busy listening to pokemon on her mobile :D Is the first one dressed and waiting to go out. Whilst i can guarantee my 14dd isn't and will take about 40 minutes to find clothes. My son has already tried to pull a fast one on me this morning.

So i better go and get myself ready and take them to their clubs. (which my 14dd has already tried to get out of)

So have a good day everyone

Scruffey Wed 07-Aug-13 09:01:19

Your child is your child - any diagnosis will not change the little girl sitting in front of you so always remember that. My DS has mild aspergers and with adjustments, he is happy and fine and fits in at school. In any case, your dd is v young for a definitive diagnosis and additionally the person suggesting it was completely unqualified. Try not to worry.

NeoMaxiZoomDweebie Wed 07-Aug-13 09:10:19

Scruffey is so right. My friend's son has just be dxd and she's very philisophical about it all and says "He's still X and has always been X. Words on a page won't change his potential."

chateauferret Thu 08-Aug-13 01:56:24

Home start merely thought it was a possibility when it was mentioned by OP and said she wasn't a doctor.

Hands up everyone who thinks that discussion falls within the definition of 'diagnosis'.

justaboutreadyforbed Thu 08-Aug-13 03:02:18

I'm irritated by the number of people who think 2 is too early. The M-CHAT is designed to be done at 18 months, you should be able to see signs of atypical development (possibly autism, possibly not) as a result of that at that age.
It is irresponsible fucking nonsense to say that it's too early to worry, because if it is is autism/Aspergers then you need help asap, the therapies need to start young to have the most effect.

I agree justabout. My son was dxed just after his third birthday although was in the system from 2 (and we all knew it was autism- the dx took 6 weeks). He would have been dxed earlier but we had a 6 month wait for assessment. He was affectionate, friendly & still able to be dxed accurately. if there is a problem it can be recognised & support given from an early age.

Just to add - the key for me isn't what support workers etc say - it's whether the mother has concerns (the reality is fathers usually don't). If she has concerns (& the OP had enough concerns to ask someone her opinion / the information wasn't volunteered) then IMO it is always wise to follow that up. The reality is it's hard to rest anyway without getting further checks. Btdtgtts

cushtie335 Thu 08-Aug-13 12:48:43

"playdates" at 2 years of age are utterly pointless. As others have said, they play alongside each other if you're lucky, other than that they will probably totally ignore each other. Most dcs don't learn empathy or play skills until around the age of 4. You're putting FAR too much pressure on yourself and your dd if you think she should be interacting with her peers at this age. I've no idea if she's on the autistic spectrum or not, but the homestart worker had no right to put the wind up you like this.

www.autismspeaks.org/what-autism/diagnosis/screen-your-child

My son was diagnosed with ASD at 2 yrs 3 months: I was concerned by 18 months, posted on mumsnet special needs chat, did the Modified Checklist for Autism in Toddlers (mchat) - went to GP who did it again (at 20 months) - he's now getting great help and the earlier the better - the early years are crucial and early intervention has better positive outcomes.

Don't be put off by well meaning people saying she may grow out of it: she may or she may not but get expert help early, don't leave it.

DS is too little to have Aspergers diagnosis and in any case it's been dropped as a diagnosis but I am grateful every day that I followed up early with my jolly, bright, chatty son aged nearly 3. Trust your instinct and be proactive. And check out SN boards for fab advice.

fabergeegg Fri 09-Aug-13 14:41:52

Thank you everyone. I appreciate all comments. It's very, very comforting to think that others have experienced frightening times with children who have gone on to thrive regardless of any diagnosis.

Support worker was with us again today and stressed it was too early to know anything. She also said DD is great with eye contact and engagement when she feels like it, also that she's very different when she's relaxed. Other children make her anxious, so it's difficult to get past the shyness and see what you have. Hard to know if this is comforting or not!

The mchat test suggested a score of 2/3 so slightly heightened risk. We're going to do as much as we have to regarding early intervention but try to leave the worrying/diagnosing malarkey until more time has passed. Once the Health Visitor has seen her, it will be up to her to refer on as she thinks right. 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.

Playdates certainly do seem pointless and I don't have great expectations for DD. It's more that there seemed to be a pretty wide gap between DD and the few children we have spent much time with.

And another mother who I'm never hanging out with again told me that her husband thought my DD might have Asperger's. Nothing against the diagnosis, everything against this conversation going on about my DD and then being reported back angry I suppose this kind of insensitivity is what many have to deal with on a daily basis...what a learning curve!

Thanks again.

Amiee Fri 09-Aug-13 15:01:48

Lots of children show ASD behaviours this is one of the reason diagnosis is so hard.
I'm not saying dismiss what's she's said but take it with a bucket of salt. I work with children that are ASD, children who have all sorts of disorders and delays as well as typically developing kids. If you gave a diagnosis to every child that gives you a 'that's a bit ASD' thought they'd almost all have one (and my own and most of my friends kids).
If your worried ask for a referral to check her hearing and
ask for a referral to SALT if your worried about her language.
By the way, I have known wonderful engaging social children who are on the spectrum and antisocial grumpy difficult children who aren't. Just like with any child her temperament and personality is going to be a journey of discovery through out her life.

PolterGoose Fri 09-Aug-13 16:58:02

Agree with the posters saying earlier the better if you have concerns. I knew ds was on the autism spectrum from probably before 2 but kept getting fobbed off and he eventually got diagnosed at 6.

I wish any professional involved with us in those early years had suggested ASD instead of it just being me and my suspicions, those were tough years.

And, Aspergers hasn't gone, it no longer exists in the DSM, but the ICD, which is mostly used in the UK, has yet to remove it as a diagnosis.

justaboutreadyforbed Fri 09-Aug-13 20:23:23

I think those language behaviours are a red flag, a child who is losing words should definitely be referred asap.

Sorry to be so blunt but it is a huge warning sign, if it is a pattern of losing words that is. SALT would be the best bet I think because they can tell whether it falls into the normal range language-wise or not. Please don't delay and ask your HV for a speech therapy referral anyway, whether she has social concerns about your dd or not.

See I wouldn't be concerned about the words thing at this age because of what I've seen with dd1. Her speech was very restricted at this age. She did a lot of trying a word and then not saying it again. She would communicate by noise not word. I know the HV was bemused at the 18 month check because she wouldn't point to her nose. I managed to display her level of comprehension by getting her to point to her boots. Aged 2 1/2 I know she rarely put two words together (because I remember a famous family occasion when she hurled a small wooden horse from her and said 'stupid horse'.) Aged 2 3/4 her sister was born and the day after she stood up in her cot and said 'Go find baby'. I remember that because I'd spent the previous night fretting that she would hate the baby! That shows though the very simple sentence structure she was still using. I can't remember exactly what age she 'caught' up but she certainly did. She is now a very articulate 15, on the gifted and talented register and with a facility for learning languages.

Children are complicated and exhibiting certain behaviours DO NOT add up to a diagnosis. That's just how that child is.

fabergeegg Fri 09-Aug-13 22:51:12

'stupid horse'...smile

Perhaps my DD is so used to having every whim catered for that she doesn't see any need to talk...

justaboutreadyforbed Sat 10-Aug-13 00:12:02

OFG northernlurker. Ask any SALT or paediatrician. A child who is losing words is exhibiting signs of a possible autistic regression, which needs urgent investigation. Get that child seen by someone qualified to judge.

sorry to be blunt, OP

FanjoForTheMammaries Sat 10-Aug-13 09:49:47

Agreed. .when my DD lost words the paediatrician was extremely concerned.

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.

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.

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

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

Dd, sorry

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