DS diagnosed with ASD on Friday - what now?

[howliscream]

I posted here a while back as I had suspicions that my DS (3) had ASD. We got a referral from the GP to see a Paed which we did (was a waste of time as was in there 5 mins and told us he might have ASD or maybe just speech delay - no really?) but referred us on for an assessment by a multi-disciplinary team.

We are still waiting for this app but in the meantime I booked an app with a private Paed as my work Bupa said they would cover up until diagnosis (and I had also read on Mumsnet that some health authorities won't accept a private diagnosis so thought I still needed the NHS app.

Anyway, we went on Friday and the Paed confirmed our suspicions that he has ASD. This wasn't exactly a bolt out of the blue but she said that his communication problems are severe (he doesn't talk at all and she said his range of sounds is very limited) which was a bit scary.

So now we're going through the whole range of emotions - sadness (what will his life be like), anger (why our son, we did everything right kind of thing) and in between all that my mind is racing with all the things I now need to do to help my son but it seems like there is so much to think of and I don't know where to begin.

The Paed told me that health authorities differ and some don't give any support until statutory school age (5) whereas other have programmes in place for younger children. If they don't, is it down to us to privately fund the support he needs? (cannot imagine leaving him for the next 2 years)Also I need to find out whether they will accept my private diagnosis or whether we still need their assessment. I just don't know what the first port of call should be and my mind is all over the place. Although the diagnosis wasn't a surprise it was still shocking and has hit DH very hard as when I first raised my suspicions he thought I was being over analytical and worrying about nothing and he'd be all right (he's a very hands on dad and is incredibly close to the kids).

To top it all off, this week was my first week back at work after a year's maternity leave for my DD (11m).

I would be so grateful if anyone could give me some advice to try and focus me and gently guide me into this new world of special needs.

Hi Howliscream, I'm very late to this thread but just wanted to say hang in there. I'm 6 months into ds1's diagnosis and he turned 3 yesterday. I completely identify with your feeling of having a mountain to climb and I still feel that way. Luckily some lovely mums on here have left footholds and signposts for us to follow though :) Good luck

Hi all

I've not been on here in a while as a) been busy with going back to work and b) seem to spend most internet time researching ASD. I thought I would update and also ask for some advice.

We had the visit from the Link Officer who we knew. It went really well and I couldn't believe how much experience she has in autism - I wish I'd spoken to her sooner (she used to work for NAS and was also an Earlybird course teacher). She gave us an outline of the system and told us how the nursery/schools she's from (which DS is on the waiting list for) is one of only 2 schools in the borough that has resourced places in its nursery and that they have lots of extra support/provision for autism. She's referring me to the Learning Support people and also the specialist SALT so just waiting for that. She said that the assessment at the CDC could take ages and that it wasn't actually necessary for getting some of the support.

So overall things went well however in the week and a half since her visit, I'm starting to get anxious. I'm such a pro-active person and this waiting is getting to me. I'm really concerned about his language and communication and am thinking about private SALT. Am also thinking of going on the PECS training course. I keep having these really sad thoughts that he might never speak so what I wanted to ask was, those of you who said your DC had no/little language to start with and are now talking, what approach did y you use to bring on their language?

I would be really grateful for any advice as am feeling a bit low today

Waiting is awful - that horrid feeling the precious time is ticking past.

We signed - first makaton then singalong. SALT pushed PECS but I didn't feel it was appropriate for ds. DS has good imitation skills & got the whole communicative intent thing as soon as he had the sign for biscuit. I view PECS as last resort tbh. With sign each word has a specific motor action associated with it (like speech) whereas for PECS the child is always doing the same thing (handing over a card). In our ABA programme we aimed for speech used sign as an intermediary (unless he could not imitate or didn't have the motor skills to form the signs) & held PECS back.

I know plenty of other people here & elsewhere completely disagree with me & loads of children have used PECS then gone on to develop speech (Marne's dd2 has done really well with PECS & speech I think). If he goes to an autism specific preschool I expect they'll have PECS.

Private SALT wasn't much good for us in the beginning - she didn't have the skills to motivate & coax language out of a very young completely non verbal child - if you could find someone with ABA knowledge that would be brilliant though. Despite being very experienced & an autism 'specialist' some of the advice she gave was completely inappropriate, most of it was pointless. A consultation with behaviourist (without taking doing an ABA programme) was far more useful in training us to communicate with ds. Have you looked at Hanen yet? It Takes Two To Talk is really good at the start.

just want you to know ,i am thinking of you,hang in there,you,ve been given some fab advice so far,glad you will go to the cdc,they also have parent support workers,who,when my son was diagnosed with autism,were fab,and pointed me in the right direction.
yes you are going on a different journey,you have landed in holland instead of paris,but holland is beautiful too,just different.i know its very early and scary for you right now,wish you all the luck.xx

ABA was the absolutely only thing that got my boy talking (2 years of specialist autism pre-school nursery, plus private SALT using PECs etc, plus OT - result: zero speech; 3 weeks of ABA - result: his first real words (absolute first word was "push" when wanting fun time on swing, showing how ABA crucially harnesses the child's own motivation in order to encourage them to speak). He is still not a fluent speaker (now 7) but has hundreds if not thousands of words, understands almost all you say to him, and gets his needs met using words not signs. He can also read, write , use a computer, behave well when out and about, and count to 50. My strong feeling is that, had I not done ABA, he would still be non-verbal, as state provision round here is woeful (am also in London, though a different bit).

I have no vested interest, am just a mum who has been where you are (he had no speech, no signs, no communcation at all at 3) and who wants to tell you how it was for me, and for many autistic mum/pals of mine.

It is expensive, but it can be done, you can learn from a tutor and then do lots of it yourself. Happy to talk on phone if you want to private message me.

Hi Howlis - DS (just 3) was totally non verbal when we got the ASD diagnosis in Nov. I'd been on the ITTTT course mentioned by Phlebas earlier in the year (v good - easy and common sense) and was told we would go on the sister course (ASD specific) 'More than Words' Hanen course for which there is a waiting list surprise surprise. I could not bear to wait (am a do-er too) and bought the book (www.winslow-cat.com or WHSmiths online) to start on at home

In June at 2 and a half DS could say 'uh-oh' (a hundred times a day) then that turned into 'oh-no' naturally by about Oct then after diagnosis in Nov I worked really hard on getting him to say 'open' which started off as 'oh' then 'ope' and is now open. Three months later I reckon he has a 60 - 100 words at a rough guess. Looking back on this it is unbelievable. Some of them not very clear, all of them very much 'taught' by me rather than picked up in the way an NT child might learn and some of them are super clear and just heavenly ('Mummy' and 'nice' - the latter is said when we have a cuddle and makes me cry).

I used to lie in bed and worry that he would never talk and comforted myself that you did not meet many 10 years olds that don't talk, then when we got the diagnosis I realised some ASD children remain very non verbal and started to a panic about that. I still worry he might never talk 'normally' but we are only three months into talking. However I am now hearing my little boy's voice and it melts me every time. I am sure you will get there. You can do so so much on your own. We have had speech therapy all year in the run up to diagnosis and most of what you get from an hour once a week is technique to continue with at home. Therefore you really are your child's best teacher. Hanen advocates this and teaches you how to do this - you should definitely buy the book. It's expensive at £35 (mind you that only half an hour of private SALT) but it will give you an excellent basis to start with techniques at home. It has really worked for us and I hope it does for you

PS we have just started PECS with new ASD NHS SALT. Not sure where we are going with it but we'll see

Wow Toppy, that is a fantastic and inspirational post, you have done so much and so well for your boy!

Hi all

I'm so sorry that I never responded to your helpful posts. Have had quite a few weeks of it and have actually got very down and at the point of not being bothered to do anything (checking emails,
housework, calling friends )

Thank you for all your help and advice. I went into Waterstones to get the ITTTT book but the one they called up on the system was only £16.99 and I wasn't sure it was the right one - could anyone tell me the author please? I have also booked an assessment with a private SALT who is coming on Monday. She has worked as an ABA consultant and also volunteers in a specialist autism school so am hoping she will be helpful.
sickof: I am very interested in the ABA. I think a lot of my sons issues stem from him not wanting to engage (speech, social activities, play) so if we can use something that he wants to try and encourage him, I think it would be quite effective. Thank you for your offer to talk about it - I would love to find out more from someone who has personally experienced the benefits. If you message me good times for you to talk, that would be great.

Toppy - your post about your son made me cry. It must be so lovely and well done to you for making such a difference.

Phlebas & gilly - thanks also. Re a behaviourist, where do I find such a person? I did contact BIBIC a couple of weeks ago via their online form but have heard nothing. Do you think it's worth calling them or are they just very, very busy?

Thanks again everyone. Your support is really buoying me up at the moment.

howliscream v. quick one - ITTT here

howliscream...I have a More Than Words book here...it is great, but, I am fortunately in the position where DS moved quite quickly beyond it (wish I'd been receommended it 12 months earlier that it was)...if you want it, it is yours...just let me know...am off to bed but shall check here after school run tomorrow

Ahhh Howlis, lovely to see you back here. I went underground too for a bit when I first posted in Nov. Totally natural. Look at the sister book to ITTTT called More than Words - it is the same thing as ITTTT but for ASD children and would be a better purchase possibly as it takes into account the greater need to engage your child. I really think this is the book for you. Again you get it from the Winslow website

We went back to see the Paed this week who diagnosed DS mid Nov (so less than three months ago). I did not even know what the appointment was for but when we walked in she just went straight in to all the developmental tests (block towers, peg boards, jigsaw puzzles, clour matching, pen skills, ball skills etc) as he was in such an unco-operative mood in Nov he would not do anything (though he'd done them all last Jan at our first MDA). Paed said it was like she was seeing a different child. It was so lovely to have official recognition of that.

DS's communication issues have been described as severe on all of his SALT and MDA assessments but he is now properly communicating. He can now even tell me what he wants on his toast and I never ever take this for granted - I relish every 'marmite' (marmar) or 'jam' (am). Anyway all this gushing is to give you hope that you will get there.

When are you going to have the NHS MDA ? If you get the diagnosis you might be surprised at the support you will get (though you will have to wait for some of it - 4 months for music therapy sadly). The best thing that has come out of it for me has been an amazing Special Needs Nurse who is like an angel. She has come to my house three times this year so far and has listened to me bang on about ABA vs Special Nurseries without being judgemental but with stories to share. She told me about DLA and put me in touch with a someone who again came to my house and filled the form out with me and she has also made a whole load of phonecalls on my behalf when I have not been able to get through or make any progress. I am a real do-er and slight control freak but I have been very very grateful of this help. I hope every Child Dev't Unit has one of these ladies. She is brill. You also sound like you could do with meeting some other mothers with autistic children. This has happened to me by way of signing up for a specialist nursery and it is a relief to talk to others in the same boat in person. Have you sought out anyone in RL to meet ? Again this can often happen after an NHS diagnosis. One mother told me that the More than Words Course (which I am on waiting list for post diagnosis) is like NCT for mothers of children with autism and she has made some really good friends from it who understand the difficulties sometimes involved with a child with ASD (like the nightmare of parties that involve pass the parcel and sitting down to eat !)

Hope you start to have more good days than bad. You find you feel a whole lot better once stuff starts to happen and you regain an element of control .

OMG Howlis - quick quick, bite off Loulou77's hand now !

Howlis if you don;t want it, then let me know and I'll see if anyone else needs it...it's just the book BTW...no CDs or anything!

(mentioned the CDs because the Hanen website offers some sort of MTW package thing...I got mine on order from waterstones!)

loulou - yes please! That would be fab and is very kind of you. I shall message you tomorrow as I'm off to bed now. Haven't read all other messages properly yet so shall reply tomorrow as well as too tired to read properly at mo but thanks all!

Just a late note to say hang on in there. It does get easier. DS2 diagnosed at 3, 8 years ago and still a bit raw! He had no sentences til 4.5. What really got him communicating, though, was PECS. He found signing too abstract, too much like speech. He needed a physical object to pass between us to show him what communication was all about, and instant rewards for communicating, like a crisp or a biscuit. He had to give us a picture of a biscuit to get one. Finally he saw the benefits of commumication! I can say he's now 11 and won't shut up about the Final Fantasy game, his latest obsession!

Also, just deal with the battle right in front of you, keep on top of it and don't worry yourself by looking too far ahead. You'll have plenty of time to worry about the next stage once you get there. It was how we dealt with the grieving. There's always something to be working towards.

Welcome to the Special Needs Parents club. You might not have chosen to join, but we're all really nice! You may get to hear about "Welcome to Holland." You planned for the perfect holiday in the Med, but somehow you have ended up in Holland. Not what you wanted or planned or looked forward to. But Holland has its good points, lovely flowers, lovely windmills, friendly people. Not as racy as the Med, maybe, but steady. Make the most of it.

Hi all

Fell asleep on the sofa last night so was far too tired to take it all in properly! Have messaged loulou for her kind offer of the book. This message board really has given me so much good advice and support - I'm so grateful to you all.

Have actually had a really good day with DS today (not that we have really bad ones but this was particularly good!)

We went shopping this morning and went into the Disney store to buy a birthday gift for a friend's daughter and there was a toy that he wanted (I was with DD so just DH with DS) My DH said no we're not buying any toys and my DH swears that he said "want it". He says that he would have doubted himself but another dad in there heard DS say it and laughed. This would be the biggest thing he's ever said (only current words are mum, dad, yeah and no and has previously said blueberry, burger and radiator as one offs) A lot of you have talked about the motivation to speak so I wonder if him really wanting this toy gave him the extra push? Wish I'd heard it though!

Then he did his first wee in the pot this afternoon! This is a major step as he has only recently began to realise when he needs to go but as he hates trying new things, was completely averse to the potty and kept going on the floor if we couldn't get a nappy on in time but today he took his nappy off, started to go a bit on the carpet so we yelled "potty", he managed to stop and we bought him the potty and he stood over it and did it. Me and DH were so proud we were literally cheering and DS looked so pleased with himself. After we emptied the potty he even tried to go again (obviously pleased with our encouragement) I know it's only a small thing but honestly I couldn't have been more proud.

Sorry I know that's a bit long but the smallest things just make you so proud don't they?

Oh and we threw a joint birthday party last weekend for him and DD and he had such a lovely day and was so happy and content (we had a bouncy castle) he didn't stop running and bouncing for about 4 hours and didn't get at all defensive when lots of different people tried to talk to him.

My family who hadn't seen DS for quite a while and know about his dx said they would never have known and how content he was (especially when a lot of the other NT children were having tantrums over various things )

Howliscream - that is just fantastic news on the talking and potty front. Am quite quite about the potty in particular. I have got no idea how we are going to start potty training DS.
You are absolutely right about motivators helping - I am working really hard on 'I want' at the moment. Every time DS asks for something (usually sweeties, biscuits or my phone) I ask him to add 'I want' to his request and he is getting there. Bubbles are a good one too - no wonder speech therapists are so obsessed by them
So glad you have had some really lovely days with him recently. Its heaven when things go really well and you just burst with love & pride for them

Toppy don't be too jealous. Today our carpet has been covered in wee. Am going to have to get it professionally cleaned I think.
I think because he only did it once yesterday, he forgot again today so we are back to the beginning again. If we can get him to do it a couple of times in succession we may just get it although even then, probably only indoors. Until his language/communication improves I don't think I'd be confident to let him go nappy-less in public. Thank goodness the trend for potty-training has got later anyway so we feel a little bit less self-conscious..