Nearly 3yo DD with possible ASD: what do you wish you had done/known pre-diagnosis?

[LightTripper]

We have been seeing a paediatrician each 6 months with my DD since just before she was 2, prompted by issues raised by our nanny (e.g. reluctance to point, wave, ask for help and more generally to use her language proactively, rather than to describe things/talk about stories: she's always been very into books/stories/songs more than toys).

To our eyes as first time parents with little experience of "normal" development our DD seemed to be progressing well. Happy at preschool, improving in physical confidence (though still behind her peers: she is hypermobile and was a very late walker), loves books, story and music CDs, puzzles, Duplo, cars, stickers, etc. Knows lots of words and to our eyes expresses herself well. Very loving/cuddly/funny with people she knows well.

However at our last appointment she was referred to a complex communication clinic and we were given a heavy steer that this is likely heading to an ASD diagnosis. I am still somewhat in shock (though our nanny I don't think was that surprised), but we have 6 months to wait for the clinic where any diagnosis would happen, during which time I will be on mat leave and want to help my DD in whatever way I can.

My understanding is their main concern language-wise is that she uses unusually adult speech, piecing together learnt phrases to say what she wants to say. So for example instead of just saying "yes" she will often say something like "I think that would be a good idea". She also still gets I and you mixed up sometimes ("do you want a biscuit?" rather than "I want a biscuit").

On the social side the concern is that she tends to stand on the edge of groups and watch rather than participate (she will sing nursery rhymes and do actions with me at home, but not in a group of other children, for example). And also that she avoids asking directly for help (will tend to say "I can't reach it" rather than "Mummy can you get it for me?").

She does do pretend play so I'm not sure where that aspect of the concern comes from. Hopefully this will become more clear when we get the paediatrician report.

Anyway, sorry for the essay, but I would really like to help my DD in whatever way I can while we wait for the formal assessment. We may be able to access some SLT while we wait so will work on that, but is there anything else I could be reading and working on with her in the mean time?

Thank you, LT

We did ABA ( the less intense version) with DS2 for a few years but, going back to the thread title, if I had my time back again I'd do Intensive Interaction instead, wherever my child was on the spectrum. You feel that DD's main difficulties lie in relationships / social interaction and II is fab for this. The problem is that it's often seen as an approach for much more severely affected children, particularly non-verbal, but I would definitely use it with a more able child. It teaches interaction and engagement like nothing else, imo. DS2 is at the severe end of the spectrum but people always comment on how sociable and related he is compared to many of his more able peers. The problem is, if you google it, you'll find lots of videos of severely autistic youngsters - if interested probably best to join the FB group 'Intensive Interaction for parents'.

As far as your DS is concerned, if I had a baby now I would do II with him/her from the start - just lots of interaction and mirroring of movements, expressions and noises - all the stuff that you do naturally with a baby but that I certainly did less with DS2 because I was so focused on DS1 who was only 16 months old when DS2 was born.

Having said all that, your DD sounds very much like DS1 at that age - I suspected Aspergers but we didn't pursue a diagnosis until he was 7, as DS2 came along and was so much more severe. DS1 ended up with a dx of dyspraxia but his social and language issues were exactly the same as your DDs. We just did lots of modelling of language, social stories to help him interact with his peers (and also some motor coordination therapies). At 16 he is doing very well at school, has a good group of friends and a girlfriend, is confident and happy - a far cry from the little boy who used to stand on the edge of groups of children and preface every sentence with ' what I want to say is ....'

Hi Hurricane! It's nice to have a few of us here in a similar situation.

We had our ABA meeting last week and it was a bit of a weird one as she basically said that she can't do much for DD (as she already does things they would work on like joint attention, eye contact, imitation). She didn't say DD wasn't on the spectrum though (and I don't think is qualified to, as she's not a doctor). And I know girls can present very differently to boys. So it's encouraging but leaves us in a limbo. She is going to send us some ideas for working on social skills in her report (as this is something she didn't see... She only observed DD playing with us for about 40 minutes).

So in the mean time I think our next useful input is the area SENCO, who should be visiting DDs pre-school this term. And I must chase the report from the paediatrician /clinical psychologist meeting last month as it still hasn't arrived and it would be good to have it to discuss with her pre-school if there is anything we need to work on there...

She doesn't sound like a good ABA Consultant to me. A qualified and experienced ABA Consultant should assess your child and identify areas of concern/delay. The baseline assessment would be based on observing your child and then speaking to you at length. Ours did two assessments, Lovaas and something else. And then devise a programme targeting those areas.

We run an ABA programme for our DS for 20-25 or so hours a week, and have done since he was 3.4yo (diagnosed ASD), which was nearly two years ago. DS' biggest problem is his inflexibility and need for control. He also has difficulties turn taking and with role play. So these are the areas we have targeted.

His initial assessment with our ABA Consultant also showed areas that he would need to hone his skills eg imitation (verbal and non verbal) before he could build up other skills. Through ABA he has learned loads and loads, and is at his chronological age with phonics, counting, numeracy, problem solving, puzzles etc. None of this would have been possible if she hadn't identified his areas of weakness and worked on them.

I wouldn't accept that an ABA Consultant cannot do much for a 3yo who has diagnosed ASD. I'm not saying that you must pursue ABA or anything, but please don't write it off on the basis of one Consultant.

Good luck.

Thanks WellTidy! DD is not actually diagnosed yet, though we have been referred for an assessment and given a strong steer they expect to diagnose... I did think the assessment was fairly short. But as we haven't yet had the letter from the paediatrician it was hard to steer to specifics. If we do wait 6 months for the official dx then DD will only be 3.4 so still fairly young. But maybe we should consider talking to a different ABA consultant once we get the letter (which I'm chasing).

Does anybody have recommendations for good consultants in London?

I don't have a recommendation for a consultant in London but we got our consultant through Child Autism uk and they have been great. I would be really interested in what others doing ABA have focused on in their programmes as I am keen to get new ideas for what might help particularly to encourage more communication and interaction. So far we have covered non verbal imitation, sharing control of items of interest, verbal requesting of things DS wants, expanding number of things he will play with/ be interested in, labelling items, a bit of verbal imitation and safe walking. Really interested in the Problem Solving which WellTidy mentioned - could you give me an example?

How is everyone getting on. Things are moving here but I'm so tired. ABA training has happened and we are now up and running. It was all a bit traumatic at first with lots of difficult behaviour but DS seems to have grasped the concept now so hopefully we can start to progress with helping him. I'm desperate most of all for improvement in communication. We have an ASD assessment during summer holidays. Hope everyone else is doing ok :)

Hello! We're doing OK. DD is still very much a "playing alongside" kind of girl but I've been arranging some play dates and finding some kids she "plays alongside" better than others, so hopefully that will help her build her skills a bit.

Area SENCO who visited her nursery was helpful. Also very positive and mainly noted difficulties in socialisation rather than anything else, so that fits with our view. She had some quite good ideas on games to work on sharing, turn taking etc so that's good.

We are also doing some "distance" ABA. I'm not sure if it really counts : basically we watch some online training videos and then do it ourselves, with 2 Skypes a month with a consultant who can answer our questions and give us ideas for what to work on next and how to do it. I think it's good for us given we don't actually have a diagnosis yet, and DD is perfectly happy as she is for now, so I didn't want to take over her life with ABA if we aren't even 100pc sure she'll be diagnosed. It feels like it should help her socially whether she is diagnosed or not (as she is clearly behind on social kills) and it's good to feel we are doing something constructive while we wait.

Other than that we have a SALT session next week. I don't really have any questions for her so I'm not sure if we'll get anything out of it, but given the paediatricians recommended it I'm reluctant to just cancel. Hopefully the SALT will have some ideas or questions... So far the SALT part has felt very led by us, which is troubling given we have no idea what we are doing!

DD continues to be lovely and is loving life and changing all the time, and baby DS doing well, so feeling much better about everything. Just hope I'm not setting myself up for a fall when we get the proper assessment in the autumn...

Great that you have an ASD assessment coming up so soon! Have you been told anything about what it will involve?

@Sprog19 I'm sorry I managed to completely miss your earlier post. That is really useful. I'd never heard of II but will look into it. Brilliant that things turned out so well for DS 1. I am trying to do lots of social interaction with DS but it's hard to find as much time as I'd like with a toddler too! He absolutely loves faces which probably means he doesn't get as much face to face time as he'd like!!