Son just diagnosed as ASD, please can anyone help

[dazzlemewithdiamonds]

Please go easy on me, have never posted before, but now I could really do with some help. My 25 month old son was finally diagnosed with ASD a few days ago, and not only I am going through a grieving process and existing in a state of shock, but I'm in a panic as to what help would be best for him. We have to wait several weeks before we get feedback from the assessment team and details of NHS help, but they have implied he will only be given a few sessions of speech therapy and a few portage sessions before we're left to our own devices until he's 3 and can go to a special nursery (if we're lucky). Although at the moment he is a v easy child, whose only issues are communication difficulties, I am so scared that without guidance on how to help him he might regress, or just that we might be wasting time that really could have made a difference. As I said I'm still shellshocked, and am overwhelmed by all the information I've come across on the internet, so would be so incredibly grateful if anyone could point me in the right direction. Otherwise I fear I might drive myself mad with the terror of letting my little boy down. Thanks so much

Poor you - don't worry, we're nice on here and there's a few mums of ASD kids here. My J is 7 with high functioning autism and ADHD. He was only diagnosed at 6 but I've had a steep learning curve since then - as you say, there's almost too much to read about ASD.

I know the feeling about worrying you'll let him down, but don't start beating yourself up about it - there's lots you can do to help him, but the main thing right now is to be kind to yourself. It's a hell of a shock and the grief is natural. You're in uncharted territory and it is terrifying, but it will ease. You've got to let yourself be upset and not be upset about being upset - you're allowed.

Then, you have a purpose: to sift through the numerous sources of autism help and work out what will be best to try. Some ideas: push for the SALT and Portage to be for more than a few sessions; contact the Social Services Disability Team in your area to ask for an assessment - a disability social worker can be a great source of help and support; contact the National Autistic Society - their website is OK and they can give you details of services in your area.

In many ways, now is a good time to find out as early intervention is key in autism. I know that many people rate something called ABA (applied behavioural analysis, I think) which seems to involve teaching children behaviours they need to learn. Some also rate the glutenfree and casein free diet. RDI and Floortime are also things worth googling but I know nothing about them except that people I trust have mentioned them as good things!

There is a lot of support out there, but for now, just take it easy on yourself.

There are a couple of autism-specific websites which might have some useful info and have forums too - asdfriendly and asd-forum.

Hope that's helpful - take care. You won't let him down - you care, and that's what he needs. You don;t need to become an expert in autism overnight, most of us muddle through one step at a time and you will too - you don't need to know everything all at once xx

Hi Dazzle! I'm not the best person to answer your post (my sons autism was diagnosed later)- others will come along soon I am sure. It is quite normal to feel shellshocked so be gentle on yourself. (Hug)
First of all your son has been diagnosed very early so you have time to draw breath and slow down and find your feet! Have you looked at the NAS website to get orientated?

Hello and welcome to the board. Sorry you're going through the pain of a recent DX. The Dummies Guide to Autism is useful for a quick whizz around the different possible interventions. Also there's a very good book by a parent to a kid with ASD - "Playing, Laughing and Learning with Children on the Autism Spectrum" by Julia Moor. Agree about getting in touch with NAS - if you find the nearest branch you can get an idea of how the local system works, and what's on offer. You may also want to look at applying for DLA and possibly Carers' Allowance.

Just to say welcome!

I think that ASD children are all very difficult from each other so the things that help one person might not help another - it might help if you told us a bit more about the communication....is language a bit issue, for example? or does he only rarely start interactions or only on his own terms, for example?

I'm so grateful for the replies I can't tell you, esp the ones telling me to go easy on myself, have been feeling like I should snap out of it and my mother in law keeps telling me I should feel blessed. I know I'll come out of this phase but for now it's hard not to feel a terrible sense of loss for us, his sister and him. I suppose if he were to stay the way he is now we would be blessed as he is so happy and is so passionate about me he wants to be cuddling every 10mins! Language is a big issue, as in he doesn't currently have any words at all. he does babble and communicates by draggine me round by the hand to show me things and get things he wants. I'm scared he'll never talk and I'm even more scared of what the future holds but it's true, I can't do anything except deal with the present.

It's great that he's babbling! You're starting very early with the language help. I wish I'd started that early .

dazzlemewithdiamonds, welcome!

No need for panic. Frankly, there's too little research out there to suggest what works or doesn't work best in the long-term anyway. Take good advice, make your own judgements - you'll know your child the best.

Personally, as an adult with Asperger syndrome, I never had a single bit of help ever in my entire life until I found some for myself much later on. But I'm still married with a son and a business and friends. It hasn't been easy, I won't pretend it has been - but there can be good outcomes. Not always, but there can be. He's got the best start possible - a loving parent.

Hi Dazzle! We also didn't get a diagnoses until later but we did have SALT from about 2yrs - I wouldn't panic about the number of sessions as they give you games and exercises to do inbetween anyway. I can't think of much to add to what's already been suggested, except maybe is there a special needs toddler group in your area - the people there may be able to let you know of other things going on and it can be good to have people in a similar situation to whinge to now and then (or just come on here). Try not to feel overwhelmed by all the info, I feel we just sort of muddled through it but looking back I don't think we've done badly.

Also my sons special school has a nursery section so may be worth checking around incase mainstream Nursery doesn't work out.

The babbling and trying to communicate sounds like a very positive start, I wouldn't panic about him never talking as you just can't tell how things will pan out.

Take care.

Nothing more to add to these fab posts (i will be using them myself) but wanted to say hello... We have our case review meeting tomorrow (to get a Dx) for ASD. (DS, 5 in April)
So I know right where you are coming from xx

Hi Dazzle

My DS2 was diagnosed with asd in Feb 07 - he had just turned 6. On the one had I was relieved that we had a dx and could move forward but on the other I was totally distraught and spent the next year and a half grieving. I really feel that I have only come to terms with this fairly recently. Be kind to yourself and allow yourself to grieve, talk about how you feel. Find someone that you can talk to - be it your partner/husband or friend. It's very important to express your emotions and not internalise them.

This is a very good forum to pick up advice and support so keep posting.

Take care.

Welcome to the SN board, Dazzle.

I have 2 boys with ASD. The eldest was diagnosed at 3.5yrs and the younger one had a provisional dx at about the same age as your ds.

As Seuss says, you just can't tell how things will work out with talking etc. At 2yrs old my ds1 didn't make a sound. If someone had told me back then that he would start talking within a year and would end up with very good language skills I would have said that they were mad.

The SALT sessions that my two had mainly involved assessing their progress and then showing me how to move on to the next area. Most of the progress made was between appointments, working through the stuff that the SALT had given us.

Be kind to yourself. Even when you are expecting it a diagnosis can still be a big shock.

Forgot to add:

Good luck for tomorrow, Novacane.

Welcome. I have two boys, the younger has no diagnosis but definitely communciation disorder, autistic-like in a lot of ways and also big problems with motor skills. We do RDI (relationship development intervention) as therapy, and later if you want to consider that I am happy to answer any questions, but I would take time just to get used to the diagnosis first.

It is a big shock and you should give yourself time to recover. Portage was a good support to us and a good portage worker will open doors to other therapies etc. I think if you manage to get portage it should not be a few sessions but regularly until your son starts school.

Once again, thank you all. Am so touched that you would take the time to try and help me. And help me you have. It's a relief to know that it's not the number of SALT appts that matters, and also, coppertop, to know that even if DS has no speech now it doesn't mean he couldn't end up talking pretty well. There is an SN nursery close by, for 6 ASD children, which sounds like it would be great, but already nervous as to his chances of getting in. Also nervous as we have been trying for a 3rd child (could be pg now for all I know) and it seems you have a high chance of another ASD child if you have one already. Not that my DS isn't a fabulous boy!

Hi Dazzle. My DS1 (3.2) was dx ASD just before Christmas and its been quite a bewildering time since. You've been given lots of good advice and I can't really help much as we are at the beginning too.
I'm a very recent member to MN and I have had so much good advice and support since the DX from the SN board; I think I would have been very lost without it.

Take care

Hi Dazzle. My ds2 was dx with autism when he was the same age as your son. I know exaclty how you feel. Shocked that they were dx with autism, but at the same time relieved that their behaviour isnt just them being naughty or difficult child.

If you can, get yourself on and "Early bird" course. Me and my OH went on one, and it really helped us understand ds more.

Also wanted to add that my ds now attends a special nursery for autistic children, that is attatched to an autistic childrens school. Since he started there, he has come on leaps and bounds. His language is so so much more better, he can actually make a 3 word sentance, and he has only been going there from September last year. When he started, he maybe had 5 words which sounded pretty much the same. His words rent perfect, but we understand him even if some people dont.

This is a fab board, you'll get a lot of help here. I know I do.

hi dazzle my ds was dx with ASD 7 MONTHS AGO AND IT REALLY DOES GET EASIER FIRST OFF DONT DO WHAT I DID AND MAKE YOURSELF SICK WITH WORRY

sorry not shouting at you

my ds wasnt offered SALT until he was 3.5 and he had obvious speech problems from 2

in all honesty i think this was a good choice now as it would have been too much for him to process in order to speak you have to understand it and in that waiting time he came on leaps every 3 month
s his range of words become bigger and now his use of words is fantastic and we have had speech therapy and his doing really well

sometimes they like to see how there speech will progress and how there understanding goes with it as they cannot give speech thearapy if they dont understand the words

you could look up a special needs group near you who can arrange all sorts of therapies to help bring speech along and teach interaction we go to one called snap and its really great

its really ahrd to start with as you dont know whats going to happen or how they will progress but my threads going back a yr my ds is so different and it all just happened i now have a conversation with him he now uses eye contact he was in nativity play at pre school his desire to play has strengthened

im sorry its hard and i have been there but 7 months on its different i have support on here i have support at the group and my ds has progressed more than i would ever have imagined

the best you can do is as his so young its been found at right time as at this age more can be taught find a group near you who can give you support and advise and ask for anything that could benefit your ds

advise i found really usefull as ds didnt have any words until 2.3 was repeat everything i did but keep words to around 3 words mummy cooking dinner, mummy drinking tea, you want juice, and giving choices too blue cup , red cup and giving chance to respnd even with pointing oh xx wants blue cup, within weeks my ds started using small words around 3 mths later 2 words together an dthe again 3 mths later woke up and heard i cant reach it and it was him

they think he stored all the information until he was ready and then now you really cannot stop him talking

so dont worry about what may not happen just concentrate on today one day at a time as it really can just change and its too worrying wandering about what may never happen

big hugs to you xx

also you may find he takes a leap and then regresses back but dont panic too much my ds does this and then has major leap he stopped talking after being able to do 2 words and then when he came back as i call it he was using sentences his brain seems to shut off when he takes leaps forward and when his ill he'll regress too but again comes back with something newxx

Welcome.

I am a Mum to a boy with AS / HFA and one with asd; ds3 (with ASD) has severe speech issues. DS1 was dx'd in 2006, ds3 got his dx last month but we've known for a few years now.

The book TotalChaos suggested is a good intro, as are the natinal autistic society webpages.

Give yourself time to grieve and adjust though before throwing yourselfin too much- it will be much better for you all in the long run. your little boy is still your little boy and will remain so, but you and your family need to adjust and be very gentle on yourselves for a time.

'Hi Dazzle. My ds2 was dx with autism when he was the same age as your son. I know exaclty how you feel. Shocked that they were dx with autism, but at the same time relieved that their behaviour isnt just them being naughty or difficult child.'...there is so much truth in that!.

I'm not surprised you feel overwhelmed with information. There is a lot of information on ASD disorders and many different therapies on offer but every individual case is different and you need to find an approach that suits you and your family. I would advice you not to feel pressured to try anything going when you are still feeling shell shocked. You will be better able to make long term decisions once the dust has settled a bit. I spent night after night scouring the internet for information on outcomes for ASD children - with a special emphasis on speech! I didn't find any real answers, it's all so unclear. Also changes in diagnostic practices make it very hard to know if the outcome of a child diagnosed 10, 20 or 30 years ago will have any bearing on the outcome for your child. I don't think there is any clear data on the number of children on the spectrum who remain non verbal. My impression that although it's not unusual, it's not the most likely outcome. All the 10 children aged 3-5 on the ASD/Hanen course I am attending have varying degrees of language whereas I have met only one or two non verbal children on the hospital program. My DS1 was totally non verbal until 3.5. Now at 4.10, whilst he does not have normal levels of speech, its development is picking up pace and we are thrilled with what each day brings now - because it's so precious.

hi dazzle, welcome to the SN board! I have ds1 who has either possible SLI or HFA - we don't know yet and I have a meeting here at home in 15 minutes where I'm going to ask the professionals if we need a dx for him or not..

Firstly, 25 months is so early to be diagnosed, and although it probably feels like an unbelievable shock at the moment, you have time on your side to help him. ds has improved dramatically over the past 12 months (now 3.5), going from barely any recognisable words last year to around 700 now, and sentences of up to 8 words - he wasn't putting words together a few weeks ago.

Try and stay positive, you could look at dietary changes, get yourself on an Early Bird course, I have a few books which have helped me - will look them out and post the details on here for you.

Keep posting - I've received amazing support from the lovely ladies on here and can honestly say the info I've gleaned on here has been more useful to me than anything a professional has told me so far.

BTW- out of curiosity, can I ask what it was about your ds which made the professionals think autism rather than a language disorder? You mentioned him being an easy child so it's obviously not major behavioural issues - just wondering, hope you don't mind me asking..

hi, hope your meeting went well, kettlechip. At first we thought DS had a hearing problem as he wasn't responding v well to his name etc. Then there was the lack of pointing, inconsistent eye contact and lack of imaginative play. Oh, and the fact that he started saying 2/3 words at 18months or so but then lost them not long after. In the last couple of months he has taken to dragging me to what he wants and placing my hand on it or throwing my hand in the required direction, and after looking on the internet it was this that was the clincher, it's unheard of behaviour for an NT child. But yes, he's a very easy, loving child who's v excited and interested in things and eats and sleeps well (touch wood in major way)

I am feeling a tad calmer now, but the panic/ grief still pop up now and then. A bit of disappointment today, heard from portage that they're full to capacity and there's going to be quite a wait, and even then it can only be fortnightly. But I know he's young, and I'm so, so pleased to hear from people whose children have ended up talking. I still have to believe DS will, just v hard to imagine now!

Dazzle - your DS sounds very like my (also autistic) DS at that age, and I agree with other posters that you have done really well to get the diagnosis so early. For what it's worth, the one thing that made a HUGE difference to getting my son to talk was a form of ABA called Verbal Behaviour. It sounds complex; it's not, it's mainly common sense. You can work on the basics yourself and the sooner you start the better, as his brain is very malleable at this age and you can make synapses connect up in his brain by working each day a little with him. Try and get him first to copy the prompt "do this" - ie you clap your hands, then say "do this" then prompt him to clap his hands by clapping them together yourself for him. Reward him massively (chocolate, praise, whatever is best for him ) when he does it. Gradually move to him doing it a little more independently and so that he copies lots of actions. NB - this could take weeks, so don't get disheartened. Once he has understood that "do this" signifies "copy what I do" then you have taught him the basic root of all speech : imitation. Then, find something he absolutely loves to do (in my son's case, it was being pushed on the swing). Wait expectantly to push him, with a big excited look on your face, then say "do this " "push" (ie you are telling him to copy the sound you are making exaggeratedly with your mouth, rather than an action with hands or feet). Even if he does nothing for weeks, or just moves his mouth a little, or just grunts, reward him with a big big push and loads of praise. Work on this kind of thing for ages, till he is making a sound like "p" or any sound, but just learning that a sound from his mouth gets him a good result. Then move onto something else (in our case, it was saying "ch" to get chocolate). You will need to prompt him a lot at first, but once his brain gets the message that making a sound with his mouth gets a good reward, you will have set off a synapse in his little brain's speech centre.
Be aware that lots of SALTS don't like ABA, and will try and put you off this technique. I had a year's worth of tradiditional SALT therapy and not one word did he learn to say. With ABA, he was making approximations at words within a month. Hope this helps - do let me know if you want to know more as I so wish I had been able to start this early with my DS. NB - from being non-verbal at age 3, he now at 5 has hundreds of words and even some three word sentences. I don't think he would have any of this without ABA (VB). Good luck to you and your lovely little man!

sickof, really can't thank you enough, that verbal behaviour sounds fantastic, and crucially, something that I can get started on right away (hope he's bracing himself). I'm aware it'll be slow going but boy, it's invaluable to have a strategy to work with. Would be unbelievably grateful for any more details.

And kettlechip, I'd really appreciate details of the books which helped you so I don't 'buy blind'. Thanks v much