Suspected ASD in DD (3.6). Want to get ball rolling on helping her - what has worked for you?

[PrinceRogersNelson]

Hi there,
I had a thread earlier in the week but thought I might try a better title to try and get some more advice.

DD was seen by ed. psych. at pre school last week who felt that she may well be ASD.

After a couple of days of feeling pretty shell shocked (although it was not something I didn't suspect already, but still having it confirmed was quite hard) I am now trying to get on and do what I can do to help whilst we wait for a diagnosis.

She has a Speech and language delay and is on a waiting list for assessment, but I think this needs to be worked with sooner rather than later. I am prepared to pay for it so can anyone recommend someone that can help? We live in London.

My DD has always had problems with pooing. She does very large poos that are hard to pass and she is clearly constipated. We have been given movical in the past but after spending the weekend googling I am wondering about the GF/CF diet.

I am going to try dairy free first to see how we get on.
What is a good alternative milk to buy?

Anything else? If money were no object what would you try? Not that money is no object for us, but I'm sure you know what I mean.

Thanks for reading.

Private SaLT really does cost a fortune. One little girl I know had an assessment (£200) - I can see you thinking 'We can find that', and the assessment said she would benefit from regular session, and her price was £130 per half hour (and we're not in London).
As a general rule, using as much visual communication as you can will probably help her - be that using symbols or signing or both. A lot of children with ASD struggle to take in information that they just hear, they need to see something to back it up.
You might get the specialists in diet over if you mention it specifically in your thread title, I know little about that.

EP cannot diagnose ASD as you rightly suggest; this person can only make recommendations re her educational needs. What was suggested with regards to that?.

Is she on anything like Early Years action plus currently?. Are there any IEP's; what are they doing to try and help your DD?.

Has anyone mentioned the word Statement to you regarding her additional educational needs?. How will she manage in a classroom?. I would now seriously consider applying for a statement from your local education authority. IPSEA's website have model letters on it you can use www.ipsea.org.uk.

Would also suggest you contact the National Autistic Society as they could help you further as well.

I think there is a lot of info on GF/CF on these pages; if you do an advanced search (the words advanced search are in white letters on a purple background) it should come up.

Never forget that you are her best - and only - advocate here.

Def start with GF/cf.

Thanks everybody.
backforgood I can see the SALT is going to be expensive, but I really feel she will benefit so much from being able to communicate better. I will take a look and see how much it might be.

Atilla I can see that I am going to be her advocate. We have only got this far because I have pushed and not allowed her to be forgotten. She doesn't cause any trouble, her behaviour is pretty good, so I will need to push. I will take a look at statementing. We have a meeting with the ed. psych on Friday and I will see what she has to say. My DD is changing setting in September (from pre school to school nursery) so once I have the ed psych's report I will take it to school.

indigobell we are starting the GF/CF as from now. Although the big chocolate cake she had at a party today wasn't great. But we bought some Almond milk which she liked and we are having stir fry with rice for dinner. Is there any particular reason you say to start with it?

Feeling positive today, but things are always better at home where her 'behaviours' are less stark than when we are with peers and I see how different she really is.

If she does have ASD with accompanying issues regarding not finding social interaction fun or useful to her (she may not of course, in which case, ignore my advice) , then generally speaking s/lts aren't much help with this.

I'd consider starting of with an ABA programme (other MNers will recommend people) and then when her interest in interacting is better (which is what ABA will help you with) I'd then consider getting an s/lt in.

I am an s/lt by the way and generally speaking, s/lts are waaaaay out of their depth with ASD.

Look into ABA (Applied Behavioural Analysis) - can be expensive if you do an intensive programme, but almost always shows immense improvements in behaviour and communication. We've done the Verbal Behaviour form of ABA with ds 5yo since he was 3.5, with great results.

x-posts with moondog. See, even a SLT recommending ABA

Thanks. Thing is she does do lots of interacting which is why everyone has said she isn't ASD.

She has great eye contact, is very cuddly. has lots of chats with people.
But - it is all on her terms. The ed. psych. said the she felt that people were another toy for her.

her interactions are quite rigid and she talks about the same things over and over again.

She is in the living room with me right now, playing a game with her self, but passing me coasters and telling me to read that book.

I think she does want to interact more. She loves people, but I can see that her interactions with people are very simple and repetitive.

How would I find an ABA programme?

Thanks everyone - everything is quite confusing at the moment for us all :)

It's a scary time and so much to learn about what is and isn't helpful but the good news is that you are on the case early which will make all the difference.

I'd start by readinghttp://www.amazon.co.uk/Motivation-Reinforcement-Turning-Tables-Autism/dp/1447748360 this and becoming a familiar face on MN which is without doubt one of the best sources of information on this sort of thing.

Develop a cordial but healthily suspicious attitude to the health and education professionals you come acroos. Most (not all by any means-some great people out there) will be misinformed and ignorant about what can help your child.

Bialy in my opinion, 95% of s/lts should relinquish responsibility for ASD provision to ABA consultants and focus on all the other areas of communication in which they can be of more use.

Sorry. Read this.

PrinceRoger if you want more info on ABA, am happy to help

I would think by interaction, moondog means that ASD usually means impaired/abnormal interaction. DS is extremely sociable but his level of engagement was (pre-ABA) very impaired. Much improved but still now often on his terms.

The thing about ABA is that it starts off with the premise that to effectively teach (whatever you're teaching: communication, behaviour, play skills, conversation, language, motor skills, academic skills, whatever), you have to get the child's motivation and engagement. Without this level of willing engagement from the child, their motivation to learn will be much reduced, so the teaching is much less effective. And it can take expertise to understand and implement how to get this engagement - then you can start teaching the skills that are lacking.

This applies to all situations, not just formal 'teaching' ones. Eg before we started ABA, at nursery carpet time ds would be lolling all over the floor, doing his own thing, wandering round the room, mouthing stuff etc. After our ABA tutor started accompanying him there, within a few weeks he realised there was something fun going on and he wanted to be part of it, and was happily sitting down with the others, taking part. We hadn't realised how impaired his engagement really was until we saw how much it improved, iyswim.

I love it.
Are you using it?

I've ABAed the scoring process to track progress more effectively so those doing it can see what does and doesn't get understoond and/or responded to appropriately.
If you were doing it with a child with ASD then the issue of motivation that you have described so elegantly below would need to be addressed.

Also working through LFT you need to have a framework for addressing areas of need that the programme shows up.
I've been training quite a few LEA people to use it recently and they all enjoy it (as do the children) and tell me time and time again how it makes, them, the teaching staff really understnad the children's language issues.

So all in, I think it's a great investment.

That's good to hear! The school SLT is using it during ds's weekly sessions. I just didn't really know much about it - a bit concerned it was a bit limited (eg teaching expressions for emotions, but not addressing underlying deficits in social understanding, so it's all very well recognising if someone's sad/angry etc but what do you do about it?? etc). But the school SLT does seem to want to streamline her targets and programmes with ABA ones (unlike the school itself, sigh) so I'm encouraged that the two can work together.

Sorry for hijack OP.

You are all great! I will take a good look at ABA tonight. I am happy to go down that route as she is on the waiting list for a Speech and language assessment and no doubt will get some speech and language therapy so it would be good to supplement with something different.

Anyone know where I can start to look - as I said I am in London. Also is it going to be £££?

I hope to become a familiar face here, although not sure I can add much at the moment.

DD is 4 and has autism. she also was badly constipated - pretty much as you describe it. we had the sunderland urine test done and subsequently went GF and the constipation resolved within 2 weeks. we did not go CF though.

Can I ask if you saw any other differences in her? Was she happier in herself?

How have you found going GF? Was it hard? At the moment we are just trying to think of naturally GF free meals as opposed to substitutes.

nope, haven't really noticed much else but only been doing it for 2 months (ircc, it takes longer than that for the body to get rid of the gluten) but having the constipation sorted was alone worth it. I think her speech has come on a bit (but she has little spurts every now and then anyways - difficult so say if it was the GF). but as said, the difference for her bowel was massive.

I find the GF pretty easy. we cook from scratch (did so before going GF), so it it not such an issue. lots of stews, chicken, fish & veg.

we buy gluten free bread (not very nice IMO) and gluten free pasta though.
and I binge on proper glutenic (?) bread when I am at work

DD loves baked beans for breakfast and the heinz beans are glutenfree.

she has a packed lunch for nursery, so that is not a problem either.

I always have some GF cake at home in case we visit some friends - I just take some with me for her.

just thought i'd add a little bit about dairy free, soya milk is a good aternative to milk as it is enriched with calcium, i always look for that because of the lack of dairy. avoid lactofree stuff it maybe lactose free but they still contain the dairy protein ( according to ds dietician)

ds (no diagnosis) seemed to be instantly happier dairy free, he used to refuse dairy products and now he doesnt and he also seemed to make instant progress in speech so for my ds it was a good move

Depending on where you are in London and where you are able to travel to, but are a few Autism preschools and nurseries. Our dd2 went to one and it's made a huge difference.