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DD 2.10 autism diagnosis. Experiences please?

(43 Posts)
Needingsomeadvice Mon 01-Oct-12 23:54:58

DD is 2.10 and we have had concerns since 20 months, when she seemed to regress suddenly. She has been and had ADOS last week and diagnosed with autism. They have not given us the more detailed report yet but we came home with a basic summary of the ADOS results.

Even though it was in my mind all along, I feel very shellshocked sad. I thought I might be OK with this after a year of appointments etc to get used to the idea but it's very final isn't it?

We have a lot to be thankful for as she is not too stuck to routines or rituals. However, she is very socially reluctant. She also barely puts 2 words together (and when she does it's lots of 'set phrases' and struggles to relay actual important information - such as where it hurt or what is her name or would she like juice), but she is aware of many concepts such as colours, shapes, animal noises etc. She has a good memory for songs and rhymes. So far, she is very upset when known plans change, but is still young so doesn't often know about routines yet.

I am feeling very concerned about what the future brings. I read on here and elsewhere about doom and gloom. I worry about her as an adult, especially when we are gone sad. I wonder how her life will turn out. I want her to reach her potential.

So...I suppose what I am hoping for is a bit of hand-holding and to hear of how it is for you if you are further along this road. Is there anything you wished you knew? I have an almost adult relative with ASD and she has had a lot of bullying in secondary school and has found life hard sad. I just wish i knew how to try and make it as easy as possible for DD.

Thanks for reading.

coff33pot Tue 02-Oct-12 00:38:14

I am sorry you are feeling low. It does make very hard hearing when someone is confirming your worries and fears in such a proffessional way. I can still replay the convo in my head word for word and that was 5 months ago now.

Please be kind to yourself as you have still had a shock to absorb x

We cant predict what the future holds but we can set our own achievement aims and goals to set our children on the right footing for the future.

I wont pretend its all going to be rosy but it isnt all doom and gloom ahead either. Most MNetters post here when the going gets tough and want back up or support or advice is needed to help us mull things over and choose our own path, but if you look inbetween these sort of posts there are some really great success stories, funny stories and proud mums smile

You have a head start being that she is only 2.10 and that is good news. Now you can self refer to a speech and language therapist or ask the relevant proffessionals who gave dx to refer you. She has then got a headway in helping her speech issues before she starts school.

Set small little goals for her and yourself. Not too many just one at a time and then celebrate when you have both reached that goal (come and brag here we love success stories!)

She has you so of course her future is going to be bright she just needs a little extra help up that ladder. x

StarlightMcKenzie Tue 02-Oct-12 09:24:12

I was where you are at pretty much the same time. I was absolutely gutted and terrified.

But you know what? It's alright. I was pissed off at the NAS woman who retorted when I told her through tears that we had just had a diagnosis, that it wasn't the worst thing, but she was right, it wasn't and isn't.

The biggest difficulty you face is the fact that most provision (health, education etc.) is delivered on mass to a set formula that generally doesn't fit our kids. Getting what they need outside of that can be very difficult.

The absolute most important thing you should know, is that most 'provision' that our kids need CAN be delivered by parents, especially in the early years. it is a heck of responsibility but also should give you hope as you don't have to rely on anyone else.

If you haven't already got it, get hold of the Hanen Book 'More than Words' and get going with it.

Research ABA and see if it is for you, or whether you can make it for you (although make sure that you learn as much as you can yourself as the techniques will ensure you have the skills to change/adapt things to improve situations you need to improve).

As far as possible, request assessments rather than provision, as this will give you a picture that you can research solutions to.

Hope that helps.

bee169 Tue 02-Oct-12 10:06:31

I couldn't read this and not post as I was in your position 2 years ago when my son was 2.10yrs . Like Coff and Star, I remember the absolute grief on hearing my ds' diagnosis. I thought to myself 'this is the worst thing that can happen' and a lot of 'why my baby?' but it is not the worst thing.

I have managed to get a statement for ds so he is supported at school. Like your dd, he has a brilliant memory and the school champion his abilities as well as support him with his difficulties. My advice to you would be to look into the provision and support in your area, a supportive school will be a great relief to you. If you need any advice please pm and I will tell you more about the statementing process and why I chose this particular school over others.

Good Luck and chin up x

dev9aug Tue 02-Oct-12 10:09:17

I think you have had some good advice here already. Yes it does takes a while to sink in, but you will soon realise that it is not all doom and gloom. We got ASD dx about a year ago for DS1 who is 3 now. It has been hard going but we are in a much better place now.

Star is also right that the quality of intervention is really important and this is where you come in, nobody would be able to do it better than you. It will be hard work but totally worth it because of the difference you can make with the right support and strategies.and also second ABA, it's not for everyone but in some cases, it can make the world of difference. HTH

marchduck Tue 02-Oct-12 11:58:56

Hi Needing, I hope you are ok. Even though you suspect it's coming, I can only imagine that it's still very hard when it's confirmed. My DD (3.8) is undergoing assessment for ASD. It's great that your DD has been diagnosed at an early age.
It sounds like my DD is a bit like yours; she's not really bothered by routines - her main difficulties are social communication and interaction. This time last year, she spoke in single words, and had a few phrases. She wouldn't have asked for anything herself, and didn't respond when asked what her name was. I have noticed a massive difference in her communication over the last few months. She is speaking in simple sentences, she asks me for things, she is much more interested in other people and she will tell people her name. She has started to initiate conversation with me - just one word or two words to tell me things that have happened, but fantastic compared to where she was this time last year. She started pre-school a few weeks ago. She loves it and she has settled in very well. She doesn't recognise the social cues of other children and she is very passive - but the other children like her and she is friendly to them, without really interacting with them, if that makes sense.
I so understand the worry about the future. It's great though that your DD has been diagnosed at a young age. I know it's easier said that done, but don't give up hope - your DD will surprise you! This time last year, I wouldn't have believed that my DD would be talking in sentences! good luck to you & your DD

osospecial Tue 02-Oct-12 17:47:12

Hi needingsomeadvice, I thought I recognised the name and thought it was you, I just checked my last thread to be sure and saw your most recent message about the diagnosis sad very sorry to hear that, and sorry I didn't see your post until now, I haven't been on mn for a bit.
It must be a terribly strange feeling to get dx as on one hand you battle to get people to recognise that things are not quite right but it must be still hard to hear it confirmed in the end. I think I would feel exactly the same even though I've known for about 2 years deep down that something is wrong, a small part of me still holds on to the fact that I might just be paranoid/overreacting.
It is a good thing that you have managed to get the dx while dd is still young as you can really concentrate on helping her now, and you have time before she even starts school. I can't remember if you said that she goes to any kind of preschool/nursery type thing? My dd has just started one in sept, only 2 mornings per week, and has been granted funding for 1:1 help there (started yesterday)which I really feel is going to help her get used to a school type atmosphere and it gives you some idea of how she will cope in school I think.
The things you say that she is already doing are very positive, apart from 'twinkle twinkle' I struggle to get dd to take any notice at all of nursery rhymes or songs etc, (and she doesn't actually sing that one just likes it when I do and tries to join in a bit). the colours, animal noises etc are all really good, I also think the more than words book is great if you haven't already got that.
I understand all your fears about what the future might hold, I have them too, sorry to hear of your relative who is having a hard time, my OH DN has asd and has just turned 16. I think finding the right school and support in that school is the best way of helping dd reach her potential.
Can't think of anything usefull to say right now but feel free to pm me if you ever want a chat x
Can I just ask marchduck - that difference in a year sounds great, I would love to get dd to tell people her name when asked and just to improve her communication like that, what do you think has made that difference please? (does she have good SALT or Aba or something like that?)

ArthurPewty Tue 02-Oct-12 18:28:11

Message withdrawn at poster's request.

Needingsomeadvice Tue 02-Oct-12 19:12:31

Wow, thank you all so much for the responses! I am sorry I haven't had chance to reply today (been a long day).

I have ordered the "More than words" book (I alreadly have the "It takes 2 to talk, but think maybe this one will be more autism focused?) and am hoping to get some ideas from it. So far we have been put in for a 6 week block at a S and L group stay and play type session once a week. It seemed good and DD liked it, but I think I need to be doing more at home. I also have the DLA form and going to be sorting that out. She goes to groups most days because she isn't in nursery yet. The people at the ADOS say when she starts in January (when she gets her 15 hours) they will support the nursery, and again when she starts school.

I will be back after bedtime to reply more individually, but thank you so much, you are all lovely smile.

marchduck Tue 02-Oct-12 21:57:25

Hello oso, I wish I could tell you exactly what has made the difference with DD over the past few months but I'm not entirely sure to be honest. I always feel that I am not doing enough and I wish that someone would come and tell me what to do...
I don't do ABA in terms of a formal programme; but based on the recommendations here, I bought the Schramm book, and have been trying to work on the basic principles (emphasis very basic!) in my own way. I have the "More than Words" book and find it really useful. DD has had some SALT, which has been helpful; but it hasn't really covered anything that wasn't in the Hanen book.
Apologies if this sounds really basic, but the one thing that I have I really worked on is getting her to look at my face more. I know this wouldn't work for everyone, as many children with ASD have sensory difficulties with eye-contact, but I am convinced that this really helped my DD with communication. Her eye contact is pretty poor, but she doesn't find it distressing to look at my eyes. I really pared down my talking to her to the bare essentials; one word, two words. Every time I said something to her, I said "Look" and pointed at my eyes, repeating a few times when necessary, until she looked at me, and then I would say my couple of words to her. Often her eye contact would be fleeting, but it seemed to really help in gaining her attention, and she would listen.
That was really how I was able to work on getting DD to say her name. A few of times a day, I got her to look at me, and I would say "What's your name?, then a good pause. I'd then get her to look at me again , and I would point to her and say " I'm (DD's Name)". It took a few weeks of doing this until gradually she got it. I'm now working on the same sort of thing with trying to get her to tell me what she's doing, in the hope that this will encourage her to answer general questions further down the line.
What age is your DD oso? I can honestly say that I think DD has had a real burst of progress over the last few months, probably since she was about 3.5 . Like your DD, my DD was also largely uninterested in songs/rhymes when she was younger, and I had pretty much given up on doing them. She has now started to sing some wee songs and do some actions, without me prompting her.
All the best to you and your DD. PS - re. your name, does your DD like Oso?Mine loves him (at least I think it's a him, could be wrong!)

osospecial Tue 02-Oct-12 22:52:19

Hi marchduck
Thanks so much for the response, i always feel like im not doing enough either and constantly looking for more things to try. I also have the more than words book and found it so helpful, like you said everything the salt does is techniques used in that book so it's a great way to learn how to do speech therapy yourself.
Yes the name is about special agent Oso! Dd has loved him since I can remember!
I have also just ordered a book on Verbal Behaviour from amazon to see what I can learn from that as i am curious about ABA but it hasnt arrived yet.
I am definitely going to try your idea about getting dd to look at my face and try teach her to answer questions like that as she doesn't answer any at moment,not even by nodding head etc, I really want to work on her communication skills. Her eye contact isn't great but it can be good sometimes,like your DD I don't think she finds it distressing, it's just more like she's too busy/wrapped up in her world to stop and look at something she not particularly interested in that point in time.
DD has just turned 3 in Sep (and had an Oso cake lol)
A private SALT we saw as a one-off said when she was 2.3 that she had a significant and severe communication disorder, and that's as close to a dx of anything that I have, (she is due to see paed in Nov)
She prob has 20-30 words now but only ones she says when shown a picture of it, she doesn't speak to communicate just drags me by the hand to show me what she wants. She loves numbers though and can count to 12.
It's really the communication side I want to work on now so thanks for the advice and I hope she makes the same progress as your DD as it sounds like she's doing great well done smile

dev9aug Tue 02-Oct-12 23:32:49

I have an 11 page manual on Reciprocal imitation training which is supposed to teach children with autism how to imitate during play. If anybody is interested, I would be happy to send them the PDF, just pm me your email address.

Needingsomeadvice Wed 03-Oct-12 10:07:11

Hi again everyone! Sorry I didn't get back at all last night because I fell asleep when I came downstairs after putting DD to bed (it was 9:30!).
coff33pot Thanks so much for your really fast reply when I needed it! I did read it that night and tried to reply but my phone crashed! You are right - it is a lovely group on here. We are having a 6-week block of attending a SALT group for newly diagnosed children (they seem to be using a lot of those PECS cards) but not sure yet what other SALT input will be given. The group is useful as I am able to meet a few other parents and children but I don't think 6 weeks with 90 minutes a week is really going to do much on its own, so as people have said I think you really have to almost become your child's teacher in this? Is there anything that people do every day? I am not working at the moment but have been offered some that takes me away 3-4 nights a week which I am going to have to decline I think sad. It involves quite a lot of prep work and I don't think I can put in the hours as I don't have much/any time to myself before about half past 9. DP has just started a new exciting job (on less pay and needing him to focus more as it is a new field he's in) so it's probably not a good time? A shame but there will be other jobs (I hope).
I was reading your threads on ABA Starlight and about how it is almost impossible to get them to acknowledge it etc. I am wondering if there are any books etc that would give me an idea? I have already ordered the "More than Words" book as I have the "It takes two to talk" but this is better?
Oso your DD seems similar in so many ways. Thank you for your reply...I hope you get somewhere with appointments soon.
Marchduck that sounds very encouraging smile. Thank you for telling me about your DD.
LeonieDelt I do agree it seems like girls are slightly different - possibly because of the way girl's brains tend to work slightly differently to boys? Your two both sound like they are doing well.
dev9aug Thanks for your reply, and yes, that does sound interesting smile.
I really do appreciate all of the replies - you can feel very alone in the early days, can't you? One thing I was wondering - how did you all tell the general population about your children? I have told the people who DD knows and those that have asked, but most people still don't know. Did you just tell them as and when, or did you actually let them know?

schobe Wed 03-Oct-12 10:18:30

This one is the one mentioned upthread and is great

I third ABA!

dev9aug Wed 03-Oct-12 10:55:22

If you have the more than Hanen book, following that would be a good start, if you send me your email address, I would send you the PDF doc I mentioned up thread when I near a desktop. This together will give you something to work on. The book schobe mentioned is really good, it tells you everything you need to know about ABA in very simple language and will help you decide whether ABA is for you or not.

Needingsomeadvice Wed 03-Oct-12 12:09:05

Hi again both of you!

I was looking at your link Schobe and just these two approaches (ABA and Hanen) conflict? I ask because i ordered the Hanen book already smile.

dev9aug Wed 03-Oct-12 12:24:08

Not at all. You can use them both side by side. The Hanen book tells you a lot about how to interact with your child in simple terms. The Motivation and Reinforcement book will tell you about some of the barriers you can face when engaging with an autistic child and how to overcome the barriers and engage them using whatever it is they find reinforcing.

schobe Wed 03-Oct-12 15:53:30

Agree with Dev, they are completely compatible. More than Words is like a weak G&T in comparison to ABA's straight whisky grin.

Both fantastic but you have to work out what you can handle and what suits you, your DD and your family.

ArthurPewty Wed 03-Oct-12 18:16:35

Message withdrawn at poster's request.

ArthurPewty Wed 03-Oct-12 18:17:38

Message withdrawn at poster's request.

Needingsomeadvice Wed 03-Oct-12 22:47:46

*Leonie:"We pissed off numerous relatives telling them bout the diagnosis in the early days. lol."
I have had some 'interesting' reactions already hmm. I think after spending the last almost a year telling certain people (eg playgroup leader etc) of my concerns and basically being made to feel I am looking for a problem, it will be interesting telling them. So far this week I have told the people running 2 of DD's little groups but luckily they are the more supportive ones and have listened in the past and noticed themselves what she is like. But of course there have been people where I have tried to share my concerns (playgroup leaders) and had the distinct impression that they think I am being precious and/or looking for problems that aren't there.
I think I am feeling the most anxious about her being at school - I got the distinct impression from the ADOS feedback that they probably would not have external funding for support unless she was a behavioural problem. That IMO is not going to be enough. I have personal experience of working with children with ASD in primary school and I am not convinced that it was the best setting for them even when they had learned to sit still on the carpet.

SallyBear Thu 04-Oct-12 13:14:47

Needing. We did our Hanen More Than Words course via the SALT. We also did the NAS Early Bird through our local SENDIS. PECS, that's a hard one. You need two people to implement it properly and also some kids just don't get it when your SALT is pushing it. I know mine didn't! We went on a PECS course run by Pyramid themselves. It was very good but very prescriptive.

bialystockandbloom Thu 04-Oct-12 13:43:10

Very quickly: sorry for your diagnosis. It seems like the worst possible thing that could ever happen - we all know just how you feel. But others are right - you get used to it, realise that your child is the same one they were before, and realise that it's not that your child is autism, but has autism - they are a child first and foremost, with some difficulties arising from their condition.

For me, the thing that made the most difference of all was when I realised we could actually do something to help, and help to develop the skills which are lacking (which no professional ever, or rarely, tell you - you just get the dx and a shrug like that's it, nothing more to do). Like others, we do ABA (verbal behaviour). Another book which is very useful, esp if you're considering doing any therapy yourself, is Mary Lynch Barbera - The Verbal Behavior Approach: How to Teach Children with Autism amazon link here. Schramm is brilliant but can be a bit technical, the Barbera is a bit more readable.

Take care, and look after yourself while the dx sinks in. Keep posting too smile

ArthurPewty Thu 04-Oct-12 14:01:36

Message withdrawn at poster's request.

Needingsomeadvice Fri 05-Oct-12 16:16:49

I was told yesterday at group about the support she would receive 'until the end of the first term in reception'. Hmm, not sure what that means. They are all very positive about the early years intervention thingy but what does that mean re: a statement does anyone know?

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