Autism.

[saintshar]

Hi - It's a long time since I've been on Mumsnet. I used to be on here all the time but my two are getting older now.
But today I've been asked to post on behalf of my Sister who has a 19 month old DD. She is convinced that she is autistic. For a while I have been telling my sis not to be silly - all toddlers do different things at different ages... bla bla...
But now I am also starting to wonder. I have started to do a little research into it, and there seems to be quite a few signs.

She doesn't wave, shake or nod her head.
She doesn't point.
She doesn't respond to her name often - only very occasionally.
She has never said a word, though she babbles.
If you ask her to get something, she doesn't or can't. She doesn't stack blocks.
No pretend play at all.
She does flap her hands a lot, more so when excited.
She doesn't point or know parts of her body.
She goes to playgroup which she loves. But she doesn't really play with other children or toys. She just runs around enjoying herself.

But she does smile at people (a very cute smile I must add,) and she does like cuddles. She loves other children as well.

My Sister's health visitor has refered her for speach therapy, (which is taking a while, she's already been waiting 2 months) but has fobbed her off about autism, and she feels as if no-one is listening to her.

Any advice, or other signs we should be looking at, would be most helpfull.

Sorry your sister is so worried about your niece. At 19months she is very young for some of these behaviours to be a normal every day thing - things like playing with other children for example you probably wouldn't really expect them to do until they are older. However instinct is often correct and your sister should definately follow up her concerns until she gets answers one way or the other. I would suggest that she contacts the GP and asks for referral to a developmental paediatrician to get things checked out. That is likely to be a while coming through but it gives your sister time to think through all the concerns she has and questions she wants to raise at the appointment. Even once she sees someone it is quite possible they will do nothing more than talk and then sit back for a few months before seeing her again to review progress as she is still very young and things often become clearer with time when there are problems.
With regards to speech therapy you may have a long wait. At her current age there is not a great deal that they will do (based on my experience as a mother who started pushing for help when DD was 16mths old) until she is older. If your sister is getting nowhere and wants assessment of speech problems though she might like to consider finding a private therapist meantime who could assess and advise perhaps? www.helpwithtalking.com/

Well done for listening to your sister and finding out more. Your support is going to mean a lot to her whatever the eventual outcome. There is nothing worse than being worried about your child and no-one taking you seriously. Hope things do work out better than she fears in the long run.

She could also look at the CHAT, checklist for autism in toddlers. link here to CHAT It's only a screening test and obviously not a DX, but it may help your DSis push for some assessment.

Thanks for the reply beautifulgirls.
I agree that she is still very young, and had tried to allay her worries for a while. I suggested that she would perhaps better waiting until she is 2 before worrying too much.
My Niece seems to be screeming a lot at the min (A LOT) and it can be quite trying obviously. I think that she is frustrated as she can't express her needs.

EllenJaneisnotmyname - thanks for the link to CHAT.
Hmmm, that checklist makes me a little more suspicious tbh.
Apart from taking interest in other children, everthing else is a 'NO'

The CHAT test is for DC of about 18 months, saintshar.

Yes i realised that EllenJaneisnotmyname. So with her being nearly 20 months, she should be more likely to do those things.

I agree with EllenJane. If your DNeice is not "passing" the CHAT test at nearly 20 months, then I think you should suggest that your sister that she talk to her hv - specifically mention the CHAT test, and that Dneice does not pass it.

it isn't a diagnostic test, but it does flag up children that need to be looked at in more detail, iyswim?

tell her to go to GP or HV and get an referal to a devlopmental paed. These appointments take months and in the meantime early intervention is best way forward. My DD2 was referred at 2years, and the imput she has had has helped no end.
Yes she may not be on the autistic spectrum but parents are rarely wrong on these things and she does appear to show signs.
As for being with other children, girls with ASD girls seem to hide the lack of social skills alot better than boys.

Thanks again everyone.
I will tell her to contact her GP. There are loads of other examples which flag up to the family that something isn't quite right.
I will let you know how we get on x

I agree there is enough to go on to push for a referral to a developmental paed. 19 months is young but you/she has nothing to lose either way just by getting it properly looked at . I think it is not acceptable to be fobbed off at 19 months though as some of things mentioned are indicative of autism but obv only someone assessing in real life would be able to say

These signs are quite typical of many toddlers so try not to be too worried. Having said that my DS had many of these signs at around the same age, mainly lack of speech, no pointing, waving, playing alonsgide etc I took him to my GP, was fobed off several times 'he's a boy, they develop differently etc'. Referred to a peaditrcian, discharged after a few months with 'its not ASD' Anyway to cut a very long story short he was diagnosed with ASD aged 5!
He is making good progress now aged 6, in mainstream school with SEN. And he never stops talking now :)

Bagpuss I wouldnt say these are "normal" toddler behaviour tbh.

Dsis has to phone her HV tomorrow about the referal to speach therapy. She is going to have another chat with her about her concerns.
It has been difficult tbh, as myself and my Mum and Dad have been worried for a while, but didn't want to say anything really. I think we thought if we didn't discuss it, then it would go away. :(
But I have tried to calm Dsis down, and to explain that if even the worse is recognised, that it doesn't mean that Dniece can't live a happy, full life - just maybe with a little extra help.

saintshar
you might like to have a look at a research paper from the American Family Physician research Journal 2010 Feb
Primary Care for Children with Autism

My Dd with autism smiles at people, loves cuddles and children btw

Hi.

Just wanted to update this 9months later.

My Sister took my Niece to a devlopmental paed, after being refered by her health visitor whom also some concerns.

She is developmentaly 12mths behind, and has sensory and other issues (sorry can't remember what exactly.)

They are now working with dsis, and although they said she wouldn't be formaly diagnosed with autism yet, that is what they think it is.

It just shows that you should trust your instincts! x

Glad she is getting some support and answers. It's good that she pushed for the referral. When DS2 was that age, we were noticing some issues, but were fobbed off until he got to reception, where they immediately advised us he needed further checks. It was such a relief that someone was finally listening to us, but so frustrating at all the time wasted trying to convince medical professionals that we weren't imagining things. [mad]

or yeesh

Glad your DSis is getting somewhere. It's a shame, but those who shout loudest tend to get the most in the way of support. I can recommend More Than Words if your DSis wants to be getting on with helping your DN at home while waiting for support. Has she been offered portage? It's home visits to get some learning through play help for young DC with SN. My DS wasn't DXed until 3.5 so it was too late for him, he went to a special preschool.

Yes she has got a portage worker, though she hasn't been out yet. She is going to come out weekly, then after 6 weeks she will be re-assessed.

She is also on the waiting list for a nursery where speech and developmental specialists will do some one - one work with her. I think we may be lucky in our area, as a few people I know who have children with extra needs have nothing but praise for the SEN practices in this town.

I don't know if it matters, but I think the issues that Dniece has are more obvious. I could imagine that some children with more subtle problems might be fobbed off more easily.

I want to thank you all very much for your support, and I'm sure we will be on here more often picking your brains

WOW!! LeonieDelt - Just looking at the videos on the firstsigns website, it is just like looking at my Niece! I must just add that I think my Sister is dealing with everything sooo well (though she doesn't think she is) :( I'm so proud of her.

She sounds very like ds1 at 19 months. I was also the first to notice (at 17 months) and couldn't get anyone to take me seriously for a long time. I used to have to hide my books about autism under the bed as I would get shouted at if people saw me reading them. Keep listening to her and it will help whatever else happens

That's great she is not getting the right services and support. A mothers instincts are very rarely wrong. I felt the same with my eldest when he was that age. He got diagnosed with autism aged 4 1/2. He is now nearly 7 and in mainstream school but with a statement and 1:1 helper and doing well. and my twins now 4 have very recently been diagnosed. If you believe there is something not right you are probably not wrong!