Worried about a friend's daughter. Can I have some advice please.

[homemama]

I'd really appreciate the views of the mums on here who have children who have HFA.
I have a friend I've known since I moved here last year. Her DD is 2.4 and Ive seen her numerous times when we've had coffee.

I would never have said anything cause I'm not qualified nor is it my place but she's just had a 2yr check (they've been scrapped here but she asked for it as she had begun to notice things) The HV has told her nothing is wrong now she feels she was worrying for nothing

Anyway I thought straight away that her DD was different from DS and peers. If it's ok I'll list then tell me if I'm over reacting

1. She doesn't point. BUT, if you ask her to point to the television she will IYKWIM I know from MN that pointing is important but I'mnot sure what this means.

2. She has excellent speech but Ive never known it to be anything other than funcional ie she doesn't talk drivel like my DS. She also speaks like Anna Ford if that makes sense.

3. She knows the names of trees and plants that I have never heard of.

4. IMO (Im a teacher) she is reading at the level of a 7yr old.

5. She is very routine based. Wants to leave the house by the side door every day. Throws tantrum if the car is out front rather than in the garage. Really hates new clothes and screams when having new shoes.

6. She never, ever plays with the other kids of pays any attention to what they're doing. She just sits and reads.

What's worried me is that the HV has said not to worry about ASD because her speech and understanding is so good. When my friend mentioned the pointing the HV asked her(DD) to point to something in the room and she did so she said no problem but I'm sure that's not the same as spontaneous pointing.

Sorry this is long. Advice really appreciated as I still think there's a problem and Im worried nobody will pick it up until nursery next sept.

It does sound like it could be Asperger's (since there is no language delay), coupled with being extremely gifted. With the pointing, what they look for is:

1. If you point at something and say (e.g ) "Oh look, there's a butterfly", does she follow your point and look at it too?

2. Does she point to something of interest and then look back and make eye contact with you to check you are looking at it too?

Sounds like she doesn't do (2).

Does she do any imaginative play - dolls' tea parties and such like?

Does she understand what she's reading? I ask because my ds1 (ASD) was able to read words at around 2.5yrs but had no idea what the words meant. If you google for "hyperlexia" you will see what I mean.

If your friend is worried then it is worth bypassing the HV and asking for a referral to a Developmental Paediatrician. My one big regret with ds1 is that I let myself be fobbed off by the HV and so it was a longer wait before he got any help.

is her mum worried?

if they pick anything up at nursery all well and good.. it is nearly september after all..

Are the books story books or are they more things like encyclopaedias?

Hmmmm. That was me as a child! My parents put it all down to being:

Very short-sighted (hance never able to follow a point -- actually I still struggle to do that!)
Second child to gobby older brother
Bright
Bored by less-than-interesting other toddlers, and preferring books
Shy

As I have [at least] one child with Asperger's, I think it's likely that I would now get some kind of diagnosis (the school report that says 'Academically fine, but I worry about her absolute and total lack of any social contact with her peers' is a bit of a giveaway -- it still didn't worry my parents!).

Still don't much like new shoes [expel me from Mumsnet immediately], but otherwise, it's not a problem. I have a feeling girls often cope with it, or at least disguise it, better than boys.

However, nursery and school can be very daunting places for a child with any form of ASD. To be honest, a child who isn't blazingly obviously autistic is likely to get very little help at this age; ours was 6 by diagnosis, 8 by the time we got any help at school, 10 before he had any expert help outside school. What might help is for the nursery to assume she has Asperger's and treat her accordingly -- the NAS have leaflets you can download with pointers for teachers and other staff.

HTH
Puss
PS
Can I swap her for my Barbie-obsessed, pink-and-sparkly, social butterfly 5-yr-old? Don't know what to do with one of those!

oh i prseume your firned is worried,
how about a GP referral to developmental paediatrician, particularly once she hasstarted nursery and the nrusery staff can send a report as well.

Thanks LGS!
No spontaneous pointing but if you ask her to point at something, she can. I've read on here about whole hand pointing etc but her point is a perfect index finger point it's just not shared interest.

My DS has leaky gut and I went through a stage of worrying about him just before his first birthday so asked advice on here. My friend's DD isn't manic and detatched like my DS was before we eliminated gluten. She is a very calm child most of the time.

She will speak to me if she needs to. She once said to me, 'I would like some milk now' So I don't know if that means she's ok or not.

No pretend play. I've only ever seen her look at books, then later read books.

Im just worried that the HV has decided she can't have ASD because she has very good speech.

Sorry everyone x posts. Thanks for input. No nursery til next september.

My friend was worried until she saw the HV,now she isn't. The books are all non fiction, all about plants and trees. Obviously she understands some of it as she sometimes just starts telling you all about an unusual tree. BUT, she doesn't really care whether you take part in the conversation IYKWIM.

Thought they would be all non fiction! The no pretend play and no spontaneous pointing are big red flags (google for CHAT, the checklist for autism in toddlers) and the talking about plants and trees and not caring whether you join in the conversation is very Asperger's. Your friend really needs to push for her DD to see a developmental paed.

I agree with PussInWellies about warning the nursery (I too was such a child, BTW). What sort of nursery is it?

Think the HV in question has done your friend a huge disservice. Also these people are not properly trained in spotting such issues.

I would also try to persuade your friend to go down the GP route with a view to seeing a developmental paediatrician.

Thanks. Ive seen the ChAT test before.

I don't feel it's my place to say anything to the nursery. I'm struggling enough with the idea of suggesting to her that someone else take a look. I'd hate some unqualified person suggesting to me that something may be wrong with my child. But, the flip side is that if there is a problem, surely the quicker its diagnosed the better.

Looking at what you've put I'd be inclined to think Asperges, but at two it's probably too early to tell. There's some definite signs though.
As for the hv saying there's nowt wrong, this is what happened when my older son (now age almost four) was being assessed.

Stage One: I notice that although he can recite nursery rhymes and stories at under 2.5, he can't tell us things, ask for things or chat to us. He appears to have very limited understanding and engages in repeptitive behaviour. A hv comes round, listens to me talk and declares him to be normal.

Stage Two: It's a few months later and my second son has been born. Other hvs at the clinic start asking guarded questions about my older son, does he do this, can he do that? I am torn between thinking I'm over neurotic and seeing a lad who does not behave like any other 2.5 year old I know.

Stage Three. I decide to stop worrying and get on with things. I go to the hvs' clinic to ask them to cancel a home visit and to tell me if I'm being neurotic. HV says "no", that they have concerns themselves, that they have spoken to a GP (these are different hvs from the first one) and that the GP agrees and wants me to make an appointment for Ds1.

Stage Four: Appointment made by GP for Ds1 to be seen by a paeditrician, who subsequently says he appears to be on the spectrum and refers him for a multidisciplinary assessment.

Stage Five: Multidisciplinary assessment concludes, at the age of two years nine months, that there is little doubt he is on the spectrum, that his communication deficits and understanding is severe and that he needs to attend a special nursery.

Stage Six: Ds1 will be four in just under two weeks. He still cannot ask for what he wants other than pulling you over to the item, he has very limited understanding. He has no awareness of his toilet needs and can't tell you when he's been or when he needs to go, or reply if you ask him. He cannot undress himself properly and can only dress himself with simple stuff. He can tell you numbers, colours, shapes, letters, but struggles to understand a simple choice of "would you like juice or milk?" We are having to have a meeting next week to decide what school he goes to and at the moment it doesn't look like mainstream is an option. As it is he hopefully has the option of continuing on to the wonderful special school his nursery is attached to.
At just over two his differences seemed mild, but a lack of progress in many areas and his skills and difficulties becoming more uneven means that now more and more people other than professionals are noticing he is not like a typically developing child.

Thank you for sharing, Bullet. It just shows how a different health professional can make a difference. I just think this one has made a mistake by thinking good speech=normal development. But then I think, she's qualified and I'm not. Don't know

I'd like to encourage her to see her GP but I'm not sure how to suggest it.

Homemama, I meant trying to persuade your friend to say something to the nursery if nothing has been resolved by then. You could say to your friend, was the HV not concerned about lack of imaginative play?

bullet, that's an amazingly useful way of summarising a run through the system.

I'd love to hear other people summarise their experience in exactly the same way - it would be so useful to parents at the very beginning (the "is there something up?" stage) of it all.

In fact bullet your post is so inspiring I am going to do my version of it (which is very different but goes like this) (and part of the point of which is that sometimes all kinds of referrals don't get you where your gut knows you should be):

Stage One: we are rather proud of our PFB baby, who takes an intense interest in everything going on around him, and spends hours singing about it all to himself. We do not think it matters that he is as intensely interested in a clock as (or more than) he is in me.

Stage Two: we get a rather negative report from nursery, all about not joining in and finding it difficult to follow instructions. We go for a private paed's assessment and a speech therapy assessment. Both focus on his cleverness and suggest that there isn't much more to worry about. No diagnosis.

Stage Three: we get called into school and asked to have ds see an educational psychologist. We see said Ed Psych, who says ds is gifted and not to worry. No diagnosis.

Stage Four: school problems proliferate and ds begins to be socially excluded. We move ds (now aged 7) to a specialist independent school for those not thriving in mainstream. The school says "we are surprised he has managed to function for so long in mainstream". No diagnosis, but "he has so many features overlapping different areas, we are not surprised no-one has been able to give you a single diagnosis".

Stage Five: ds is utterly happy, in a school where everybody has some kind of school difficulty, whether it be dyslexia or dyspraxia or social difficulties; he makes friends again, he manages some work independently, his need for physio is understood & worked with.

Stage Six: unknown. He can't stay where he is for ever.

Bink, where is this school?

LGS - central London, Kensington. It's not one of a kind - I've heard of quite a few others on the same lines.

Just wanted to say thanks to everyone for the advice. It's difficult when it's really none of my business. I'll try and suggest she speaks to her GP. There seems to be lots of info out there on signs of autism but not much of it relates to HFA.