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

(35 Posts)
LightTripper Wed 15-Mar-17 23:29:30

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

OP’s posts: |
Imaginosity Thu 16-Mar-17 00:26:27

I wish I had known there was no reason to panic. My son was diagnosed at 5 and from what I read on the internet I felt I had missed some vital window for early intervention and that my son was doomed! He's functioning very well now in school with all the help that's been put in place there since last year. His social skills have improved hugely too but he still has issues.

I wishI had not spent time trying to fit my son into the 'normal' box and just accepted quicker that he was different and followed his lead in what interested him and what he wanted to do.

I wish I had realised that there are good sides to having autism. My DS has a unique way of thinking and I wouldn't want him any other way. Everything I read about autism in the early days was so grim it seriously worried me. I wished at the start that I could take the autism away from my child - but now I want to keep it as its part of him and makes him who he is. Now I just want to help ease the more problematic sides of it.

Also, in relation to pretend play, my DS who has autism has a very vivid imagination and loves imaginative games - much more so than they average child.

LightTripper Thu 16-Mar-17 21:21:44

Thanks!! I think the problem is that the idea I had of autism is very different to what it actually is, which means I took false comfort from my DDs happy and easygoing nature and big vocabulary to think she couldn't possibly have it

I'm still struggling to come to terms with it and desperately looking for reasons they are wrong, which I'm sure is not very helpful.

OP’s posts: |
Sausagepickle123 Thu 16-Mar-17 22:47:25

Hugs to you. I also had no real idea or understanding about autism until it dawned on me that my son had it. And then it took about a year for me to really make my peace with it. Our family is extremely happy and my boy a delight.
Diagnosis for us was just confirmation of what we knew with some added analysis. While waiting for the assessments I took the view that my son had needs whether he had autism or not and we started to work on those (SLT, OT and we also started some
ABA) and as I realised he would need help at school the following Sept, the EHCP process (my son has really quite a high level of need). We also didn't ignore his strengths and worked on those too.even if your daughter doesn't have ASD there are clearly some red flag behaviours which perhaps you can do what you can to help her with.
One year after diagnosis my son is doing really well (in a mainstream school, happy, keeping up academically, making progress socially although social and language difficulties remain).
Look after yourself xx

LightTripper Fri 17-Mar-17 11:04:44

Thank you Sausage, that is really comforting. I really do want to start to do whatever we can to help her regardless of the final diagnosis. She is already at nursery for about 8 hours a week which she loves, and my aspiration is definitely for her to be in a mainstream school if she can manage it.

You mentioned that you started some ABA: we've started to read about that but it looks like they would want 35-40 hours a week with her, which would mean dropping school and lots of her other social activities... Is this something you did, or is there some kind of "middle path" where she could do both? She has developed so much through things like school and Gymboree in the last 6 months that I'm really reluctant to drop them. If you worked with particular practitioners or resources that you would recommend I would really appreciate any suggestions!

Thank you for the hugs. This is so hard but I know we'll get there in time. It doesn't help that my son is 2 weeks old so I am full of hormones and worries for him too!

LT x

OP’s posts: |
Chasingmytail17 Fri 17-Mar-17 11:43:00

imaginosity and pickle so lovely to read your posts. I am in a similar position OP we are suddenly my having to come to terms with the possibility our 3yr DS might bd showing signs of ASD as well as his hearing impatient (diagnosed at birth) I feel panicked, and sad. I love him so much and just feel weighed down with worry about what's ahead. I'm sure as other posters have said this is probably partly due to lack of knowledge of what autism actually looks like in individuals and also the gloom that seems to fill everything I read online. I am currently finding my heart sinks a bit everyone I see the difference between him and his peers. I wish the feeling would go away and I could go back to enjoying everything about him like I did before. We are seeing SALT next week so I am hoping this will help.

LightTripper Fri 17-Mar-17 12:36:31

Thanks chasing. That is just what I feel! Suddenly second-guessing/interpreting everything she does instead of just enjoying her. Hopefully we can chat more as we find out more? Feels nice to have a virtual hand to hold with somebody going through the same thing.

OP’s posts: |
bialystockandbloom Fri 17-Mar-17 13:07:52

Hi OP, just quickly coming on to say you can do ABA fit much less than 35 hours pw and it still be effective. We did it with our ds, started before he was diagnosed. Amount varied, at its maximum it was 21 hours a week, and had huge results. The ABA therapists also went in as a 'shadow' at nursery, took him to groups etc so you don't have to give that up. (In fact it's massively beneficial to continue, with a therapist there, as natural environment situations are the best places to learn. Eg with ds, when he was at nursery before ABA started they'd leave him playing in sandpit for hours "because he was happy". ABA therapist came, realisied it was a fixation and he didn't know to move on or play with other things, so this was an early target. Within two weeks he was happily playing with many other things and joining in with other children for the first time.)

Your dd sounds lovely. Easier said than done, but it helped me in the early days to on any ways I could can help ds in the areas he needed, rather than the name of the diagnosis. All the best.

bialystockandbloom Fri 17-Mar-17 13:08:46

Sorry for garbled post, on phone in a rush!

bialystockandbloom Fri 17-Mar-17 13:10:34

That last sentence was supposed to say it helped me in the early days to focus on helping with his specific difficulties and areas he needed, rather than the diagnosis. Bloody phone.

Sausagepickle123 Fri 17-Mar-17 13:45:02

Hi - as Bialy says for the ABA, you do not necessarily need to do 35-40 hours a week. It all depends on what the child needs and time and money also count! At our max were doing 18 hours and we're now down to about 6 hours a week after school (in school he has non-ABA TA support). Our tutors shadowed my son at nursery, and go on playdates with him (to support social skills - you can't do that at home on your own!). ABA has been fantastic for my son but I also know many other children who have not done ABA but have done brilliantly too.
Good luck - your DD sounds gorgeous, her happiness is the most important thing x

Chasingmytail17 Fri 17-Mar-17 14:03:57

Agree LightTripper virtual hand hold here. It is hard as RL friends can only be so supportive when they don't know what it feels like to go through this. I just picked DS up from pre school where they have been finishing his latest report. They are lovely and very supportive of him but I know they are concerned. They keep commenting on his complete disinterest in his peers. They even said they think his social play has regressed since Christmas. Heart sink feeling again. The also comment on how he likes to repeat their instructions. For example at home time he will say home time home time coat on coat on. I always thought it was him being excited and willing to move on to the next thing but maybe hard not to feel down amongst all the unknowns x

LightTripper Fri 17-Mar-17 15:51:38

Same here Chasing. I keep realising that things I thought she was doing well at (E.g. Using bug words and adult phrases) can be signs of a problem, not of progress. Though I'm sure half the things I worry about (e.g. Total manic loopiness at bedtime) are pretty normal toddler behaviour... But it just makes you question everything.

Just got a lovely email from her pre school SEN saying they have lots of experience with Autism and communication disorders and are going to fully support us which is really reassuring. I guess all these little positives will just normalise it in time. Dreading telling my family though. I cried on the phone to the SLT earlier just arranging an appointment, so I can only imagine what I'll be like with my mum and dad... I dont want to worry them unnecessarily but also don't want any diagnosis to come as a complete shock in the autumn, as up until now I've been saying I'm sure it's not autism (idiot, I know...)

OP’s posts: |
Chasingmytail17 Fri 17-Mar-17 19:20:00

We have just told DH parents today as they are visiting and I spoke to mine on the phone. It has made me feel a lot better actually although it's hard to face the reality of what might be happening. They were all reassuring and helped me focus on positives. It also felt better to get it out there in a way made it feel less of a big deal. He is white is is and we all love him. It's just hard facing up to the challenges that may be ahead. I too still sometimes think maybe it's not ASD maybe he will suddenly pick it all up and it's just his hearing. But deep down I think I know there is more too it. I also felt bad about worrying others but actually I don't think anyone will be even a fra toon as worried as we can be as mothers so in that sense it's not so bad. It's so nice to have you on here though as I don't know anyone in real life going through this and unfortunately my friends with children the same age just seem super advanced. One even commented she could believe our children weren't going to school until 2018 as it was so far away. I was there thinking it could be another 5 yrs away and I woukd still be worried about DS coping!

Chasingmytail17 Fri 17-Mar-17 19:21:26

* he is who he is...not white...stupid phone

Chasingmytail17 Mon 03-Apr-17 13:51:22

How are you and DD getting on LightTripper? We are still waiting on our next paedeatric appointment and in the meantime have SALT visiting nursery tmrw. I am interested to see what she thinks. More and more I am noticing the difference in DS with us and other family/close friends and everyone else. He just seems disinterested of he doesn't know them well. Especially children. Whereas at home he does try and involve us with his life and play. Hmmmm. Hope you are doing ok smile

LightTripper Mon 03-Apr-17 21:55:54

Hello! Thanks for checking in. I also find I only really see the differences with children the same age. Visited an NCT friend during the week whose DD always had very similar personality and development traits to DD as a baby but I do see the differences now (hard to put my finger on exactly what, but I can see there is something different. DD is definitely interested in other children but has no idea what to do with them (e.g. at the playground yesterday scooted up to other children and just gazed/smiled at them, but doesn't say anything unless she actively needs to get past them or something like that).

Telling family and a few friends has been good though! Several have been a bit in denial too but not in a harmful way, just saying she is fab. Several others have children with some challenges or friends with ASD kids so hopefully that builds a bit of a network for if we do get a diagnosis.

School have been great and arranged the LA SENCO to come and advise. We've seen the SLT who said her language is quite advanced but was helpful with some specific questions we had kind of on the speech/socialising borderline and will check in with us again next month. As for the actual complex communication clinic I don't think we'll even get a date for 3-4 months. We'll also meet some ABA people and see if that seems helpful.

So loads going on really. Feeling better about it as I spend more time with DD but still a bit wobbly about DS. I know I mustn't borrow worries but he is so tiny and perfect, and I do worry about him having a more severe case and how we would cope. On the bright side my paranoia should mean we spot any problems early hopefully...

Sorry, a bit of an essay. How are you feeling now? Hope tomorrow goes well!!

OP’s posts: |
Abbott10 Wed 05-Apr-17 09:09:18

Message withdrawn at poster's request.

LightTripper Wed 05-Apr-17 10:30:10

Hi Abbott. We are new to this so others will have more expert advice. We just used Google until we found a company reasonably close to us with a slightly less "intense" approach (as we don't want her to lose the activities she loves). We have filled in an info form and will talk to them in the next couple of weeks before deciding what to do. They do have a CQC report so that gives us at least some confidence in them.

I get the impression it is considerably cheaper to find a consultant and then put together the tutors yourself, but we decided a company was the easiest place to start.

OP’s posts: |
Abbott10 Wed 05-Apr-17 12:25:03

Message withdrawn at poster's request.

LightTripper Wed 05-Apr-17 19:28:23

It will be interesting to hear what they say. Our school Senco and SLT have been cautious, if not outright negative. I think partly due to the intensity and partly due to the expense.

OP’s posts: |
Chasingmytail17 Wed 05-Apr-17 21:34:53

Welcome Abbott as LightTripper said we are both new to this. We have however also started to investigate ABA and have a consultant coming to meet us all in a few weeks with the intention of starting a programme as soon as we are able. We are not in London where most seem to dwell but aren't too far away. I gather lots of them will travel anyway as it's not them doing the day to day (that's the tutors). I will keep you updated how it goes. It's all daunting but doing something I feel might help DS is helping me feel better.
I haven't heard from the SALT who visited nursery this week yet but the staff said she was lovely and got an idea of things as they see them so hopefully will have some feedback soon.
I know what you mean about borrowing worries LightTripper my DS2 isn't quite 1 yet but the thought does niggle at me. Must stop over thinking...!

Hurricane74 Sun 16-Apr-17 21:49:55

Hi, I just wanted to say hello as it sounds like I am in a similar situation too. My DS turned 3 in January and we have suspected for the last 12 months that he has ASD. He is a lovely little man but hardly speaks at all and before we started the ABA (in Sept) he was very fixated in one or two activities and hard to move on. He is doing really well with the ABA and is much more interactive and responsive now but the speech still isn't coming on massively. We are hopefully seeing the pediatrician for the second time next month but feel it will be a formality to get a diagnosis in the end as he displays so many symptoms. We do about 10-15 hours of ABA a week and then 9 hours at preschool. So plenty of time left for trips out and chill out time together. It's reassuring to be in contact with others in the same boat. Wish you and your LOs well xx

Chasingmytail17 Sun 16-Apr-17 22:32:58

Hi Hurricane welcome to this thread. I find it so reassuring to share with others on here. It can be a lonely and daunting road at times. It sounds like you are doing great having started ABA already. We are meeting with a consultant for the furst time on Monday to look at starting a programme for about 12 hrs a week hopefully as soon as we can. Do you use a tutor or do it yourself? My DS turned 3 at the end of last year so is almost the same age exactly as your DS. He does speak but mostly observations or to tell you what he wants. He also recites TV shows a lot as well. He is speaking but I don't think he really understands the meaning a lot of the time if that makes sense. Some people have suggested he just has a receptive language delay and it affects his communication but i'm pretty sure there is more too it. We have our next Paedeatrician app in May. Xx

Hurricane74 Sun 16-Apr-17 23:20:19

Hi, hope your meeting with the consultant goes well. We have a tutor for between 7-10 hours a week and then I do a few on top of that. Having a programme in place has kept me sane the last few months as we haven't had much help from the local authority here and we have had a few behavioural issues to deal with as well as the language delay and it's felt like although I have tough days still we have a strategy in place on most things and somebody to talk to and get advice from. Will you get a tutor or do the ABA yourself? xx

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