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.

right. first of all, I am sorry you are going through this.

diagnosis is a very raw time - do take the itme to digest all this, sit back, and remember - your boy is still your gorgeous boy, whatever label is attached!

also remeber that htis is now a marathon, not a sprint. you do not have ot do everything right away. in fact, it is far better to do things methodically - rushing about trying to achieve everything soemtimes means, like everything in life, that things can be overlooked, ignored, or even made too much of.

first things first.

get oyur ds listed with:

portage (a pre-school play scheme for SN children. you can often self refer) our portage worker was one of our biggest allies.

is your ds at pre-school/nursery? if so, talk to the senco there. there may also be an LEA early years worker.

get on the phone, and get yourself referred for SALT (speech and langugae therapy). it could be a long wait.

find out if your area offers an Earlybird course. this is worth going on, if only to meet other parents in the same boat. depeding on area, they can actually be useful.

your area may also offer other courses. these do vary enormously. if there is a Hanen course on offer at all - jump at it, grab it with both hands. these are really very good for helping with communication difficulties. if there is no Hanen course on offer, you could take a look at the HAnen books (It takes two to talk, and there's another one, sorry, I can't remember). they are expensive though - it might be worth asking if anyone on here would be willing ot lend (I don't own them, otherwise I would!) your library may be able to get them in.

I think I will leave it htere, as I don't want ot completely overload with info (sorry, I probably already have)

please do take time for yourself. this is, of course, a shock - I still remembr getting dd1's diagnosis. she was 2.6, and we had been pushing for nearly 2 years by that point. I knew what they wer going ot say, but it was still a huge shock. right up until the words came out of the paed's mouth I was willing her to say that she could see nothing wrong, that I was obviously over-protective and neurotic, etc etc. I knew she wouldn't say that, but I have never wished for anythign so hard in my life before...

be gentle on yourself, and enjoy your children, they are little for souch a short time

Very sorry to hear about the diagnosis it is an utterly shit thing to go through :(

My ds is 4 now & was diagnosed just before his 3rd birthday. What I did was panic, give up sleeping & eating & pretty much have a nervous breakdown ... I wouldn't recommend that - more productive things

• portage - we had about 4 months of portage starting before diagnosis (here you need delays in two areas to be referred foe us that was speech & play) ... it wasn't useful in terms of ds' development but was good for me to have someone outside telling me I was doing everything right & hadn't caused the autism. We got referred through the HV.

• BIBIC - we didn't follow the therapy (wasn't really appropriate for ds) but the developmental assessment was very useful & made the paed take us more seriously.

• Signing - was massively important for ds (was was non verbal less than a year ago), started off with Mr Tumble & makaton then did sign-along training, it completely changed our lives.

• SALT - pretty useless tbh but we see them every 4-6 weeks ... they might be able to get you on a Hanen course or signing training

• Hanen - It Takes two To Talk & More Than Words - both excellent

• Visuals - ds had very limited receptive language, we used picture of people & places so that he had a better idea of what was going on & to give him some ability to make choices ... reduced his anxiety.

• nursery - ds started after diagnosis at a private nursery, we've struck gold with them & he's had a very good 1:1 pretty much from the start despite the fact that we've only just got funding.

• ABA - we consulted a behaviourist before diagnosis to begin work on his language - it is by far the single most useful thing we did, even though for the first 4-5 months we only did 6hrs a week.

I remember from previous posts that you are very worried about your ds' speech - that was me 18 months ago. I remember being desperate for someone to give me some hope that he would talk. At 2.5 he had about 10 words/sounds which were all nouns & not used for any useful communication, he'd learn new words and lose the old ones. It was only when he started signing that he really began to communicate at all - at three he had the language you would expect of a baby. He started using single words to communicate (biscuit, go, push etc) when he was 3.3, 3 months later he started putting words together & a year later, while still delayed, he forms long complex sentences (tenses, pronouns, plurals, prepositions etc).

There is hope but it feels so bleak - please try not to compare your child to others, either NT or ASD it will make you utterly miserable.

silverfrog - thank you so much. (will reread your post several times to take it all in!)

You're right about the franticness - my head has been swimming with "find groups and if there aren't any, I'll start them" kind of knee-jerk reactions. As you say, I should probably just let it sink in a bit first.

DS is not at pre-school/nursery yet. He turns 3 next month and is down on the list for the nursery where he attends playgroup (Sure Start centre) but they are oversubscribed and we've been told he probably won't get in 'til Sept (to be honest, I don't think he'd be ready yet anyway) The good thing is, the nursery and school have very good staff who we know quite well as MIL works at the school so we can probably get some good advice from them very easily and also they have a lot of children with autism at the school.

Re the SALT, DS did see them at age 2 (before suspictions of ASD, just thought it was speech delay) We couldn't attend the Chat course that they suggested and so they just closed his case with no underlying concerns. I think we were led into a false sense of security by all those well meaning friends who know of a a kid who was a really late talker, and now he doesn't shut up etc etc. The Paed said that he needs specialist intensive speech therapy that is geared towards ASD. Will the local SALT be geared up for this?

Thank you for the recommendations re portage, earlybird and Hanen - I will look into all of these.

Until now, I have had no experience of SN and it is like learning a foreign language with all the acronyms and who's who - it's a bit daunting but Mumsnet seems to be a goldmine of information which I'm so grateful for. It's just so raw right now and seeing my family so upset is awful. My knowledge of Autism is limited but have been having to explain it to my parents who really know very little (have been wonderful though). It just feels like a huge journey that we're now beginning on but you're right, I do need to stop and smell the roses for a while.

Thank you once again. I have a feeling I may become a regular poster from now on

So sorry you are going through this.

Dd2 was diagnosed at the age of 3, like your ds she was non-verbal, we were told she had severe language delay, she would not respond to instructions, had no imaginitive play and very poor eye contact.

Dd2 was offered a place at a special needs nursery who had great expereance with language/communication problems. Dh and i were sent on the 'earlybird' course which was really helpful for both dd's (dd1 had already been diagnosed with Aspergers syndrome).

Dd2 started to use PEC'S (picture exchange communication system), for the first time we had a way to communicate with her which was great, she then begain music therapy which gave her the confidence to use her voice (make sounds) and she begain to talk.

At home and nursery we used techniques given to us by SALT and used 'floor time' to encourage dd2 to interct with adults and take turns.

Dd2 is now 4.9, she started MS school in september (which has been hard work), she can now string together sentances, can ask for things and answer simple questions, she is ahead with her learning skills (can read, write, count etc..) and is a whizz on the PC.

Getting a dx is a huge shock, even though you are kind of prepared for it, i still have days now where i can't believe i have 2 dd's on the spectrum and i worry about dd2's future. I don't know how she will be as a teenager or an adult, will she be able to work? will she be able to look after herself? The thing is 'no one knows'.

Portage have been a great help with dd'2, Cerebra are also great, they are a charity which provides free advice and a free libary (books and toys), they also provide funding for SALT if you need it.

do stick around - there is a LOT of useful info on the SN boards.

I don't think there's much that someone here hasn't come across/been through/experienced.

I would second Phlebas on the following:

BIBIC. we too found the assessment really useful - focussed us on which bits dd was REALLY behind on. we did do their home prgramme for a while (well, her pre-school did) and it helped with some sensory issues. they were very thorough, which is moe than I can say for most nhs services.

ABA. phlebas and I both use the same consultant. ABA, along with dietary interventions, has been the most useful thing we did for dd1. in fact, she is now at an ABA school. again, if you read up on it, don't get panicked by the reports of 40 hours/week intensive intervention. we started very part time and very informal too. every little helps, as they say.

Re: SALT. hmm, well I owuld say that no, nhs SALT services probably won't help in the slightest. but that is coloured by our experience, I'm sure. pre-school will want SALT onside, though, and onboard. so get back on that list. sometimes, you just have to jump through the hoops - a bit like the private/nhs diagnosis tussle.

I wold also say get onto Statementing.

you will be fed a lot of nonsense about your ds not being severe enough or that oyur LA doesn't ssue statements anymore, or that they don't for pre-school children, etc - THIS IS ALL UTTER HORSESHIT (sorry for shouting)

start now, and by the time all the dleays have happened, you might have a statement in place in time for school (it took us nearly 3 years)

DLA! Apply as soon as possible life will get expensive very quickly - we were told that we couldn't apply until we had a diagnosis which is crap & missed out on 3 months money. We used BIBIC report to support our application & got higher rate care.

Frosty - thanks for your message too.

It seems there are so many approaches and I guess you have to try them and see what works best for your child.

You're right - the language thing really petrifies me. I am so scared that he will never talk and it makes me so sad to think I have never heard his voice (properly ifkwim) It's great to hear that your DS has made such good progress.

I'm trying to stay positive as DS has a lot of things on his side - the Paed said he seems to have good cognitive ability and that he is very even tempered (we don't seem to have the severe problems with behaviour that I know some do) and despite his lack of language, we have surprisingly few anger/frustration issues. He is also quite affectionate so I know I should count my blessings. I think the scary part is just not knowing how this will all turn out - I worry that he could deteriorate.

I will look into the signing although DS has never been one for mimicing. I took him to baby sign when he was little but he mastered a few signs and would then promptly drop them (although interestingly we were making tea together yesterday and said "what do we put in now? and he signed milk so it may definitely be worth revisiting.

I really want to find some parent groups as to be honest, I have let some friendships (people from groups with kids the same age) drift over the last year as couldn't handle meeting up and trying to excuse some of DS's "odd" behaviours and didn't want comparisons with their kids.

Thanks again. I'm thinking of starting a notebook with all the recommendations so I can work through them all.

brilliant communication form your ds re: signing milk honestly, that is fantastic - he listened, he heard, he answered appropriately. really really good stuff.

whereabuts in the country are you? again, parents groups vary a lot. I've never managed ot find one where we've lived (and we've moved about a lot for dd1's education), but you never know, there may be something in oyur area.

Hi. Sorry you are going through this. I still feel crappy about our DS' dx. It will take a while!

Not all therapies will help all children. It depends on the child's strengths and weaknesses. We can only say what worked for our children.

My DS was 3 and had 30 nouns. I despaired. I tried everything to get him to speak...was so sick of speaking to him and getting no reply. Paid for private SALT (good) alongside the NHS SALT (paltry). He's now 6 and speaking sentences, I'm pleased to say. A proper little chatterbox.

We're now working on his sensory issues. And checking his diet/metabolism out.

There's no 'cure', we all know that (beware US sites that talk of 'recovery') but as parents me and his dad just want to see a few more smiles.

Take time to take all of it on board. It really is a marathon not a sprint. There will be bad days AND good days.

But sticking around here will be the best thing you will ever do. Loads of experience and advice to be hand. And a friendly ear.

Marne - thanks for your support and recommendations. That's great to hear about dd2. It fills me with hope that DS may speak given the right intervention. You're right, it's the what if that's the worst part.

Silverfrog - I'm in London (east)

howli

I'm so sorry this has happened to you as well. I get tearful when I read that we have a new member because I remember so clearly what it was like for us and it was, quite frankly the worst time of my life.

There has lots been said that I agree with so I won't repeat but there is one things that you MUST do:

1. Start a contact log. In it put the date, the person you had contact with (telephone/face to face/email/), the gist of the correspondence with a quote if any promises are made. You can also put in any websites you come across or support groups that you would like to investigate further at sometime but don't have the time or brainpower to do so yet.

I know this sounds tedious but I promise you you will be bloody relieved you did it in a year from now.

Hi, my DS was diagnosed at 2.6. He regressed - had lots of speech but then lost it. His regression lasted about 6 months - then we started ABA (having waited for provision to start but fobbed off) and he started using his speech again within days. He was about 3 when this happened.

ABA is expensive. An alternative is a special school nursery or speech and language unit. These usually take children from 2.5 but getting them in can be hard as you need a statement of SEN which can take months to get.

Look at special schools. It can be hard to get your head around the idea thats where your child belongs but your child needs specialists not well intentioned mainstream nursery staff who can only provide glorified babysitting. Children can move in and out of special school and many go to specialist at 3 and move to mainstream at 5 or 6.

Few NHS SALTS have much insight into autism - ie its often the motivation to speak that is missing not the ability and not all SALTS know how to get children motivated to speak as well as autism specialists. There are exceptions eg SALTs who have spent time in a special school. Some children who have difficulty with sounds need SALT but often that comes once they have started using speech.

PECS is worth looking at - you can go on a course yourself or the SALT should teach you - Pyramid run courses and they are very good.

Its great you have those recommendations - are they in writing? If not when you have time write back and confirm what was discussed and set out that the paed recommended specialist ASD and SALT teaching.

The LA should have a scheme for funding 1:1 support for over 3's. We got 75% of nursery hours 1:1 before we got a statement. We also got SALT and autism outreach. However both of these were too infrequent and poor quality to make any difference. So despite 1:1 for a year he made no progress. Thats why our experience was that the more specialist the staff the better.

Some areas have private ASD nurseries or ABA schools. There are few LA ASD nurseries left anymore but many MLD schools will have autism classes.

You need a copy of the SEN code of practice and advice on applying for a statement - see IPSEA website. The SEN COP says all children should have their SEN met from birth.

Together from the Start, the ASD Guidelines and the Autism Exemplar from National Standards Framework are good docs to point to that early intervention is important. However there have been loads of publications from the Dept of Education (then DCSF) on this if you trawl back through the archives. Star did a great thread on this.

The Local Authority have a statutory duty to meet your child's needs once they are aware of them. So ring up the SEN officer now and register that your child has a diagnosis of ASD and ask for info on specialist placements, referral to portage, early years funding (ask for the policy in writing) and ask for an educational psychology assessment.

It is hard to look on the bright side. But there is hope. My son is making good progress - slow but steady.

Hi there, you are on the best board for advice. My Ds was diagnosed just a few months ago and the support here has been invaluable.

Do as much research as possible. try not to panic about the future (very hard not to, but it will just upset you).

The signing sounds good- i would recommened PECS as visual stimuli seems to really help.

See if you can get on an early bird course- most people find them informative.

Try and keep positive, easier said than done, I know.

Thanks everyone for all your support and recommendations. It has really helped a lot to have some starting points and to know that there are other people who understand how scary it all is right now.

I have a question which might seem a bit silly so forgive me. When you talk about Local Authority, does it mean the council or the healthcare trust? Sorry, I really have no idea about these things and want to contact the right person.

confusingly, it can mean just about anyone!

LA is usually reserved for education matters (in some places they are still LEAs, some LAs, - like everythign in the SN world, there seems ot be no single term used!)

our SALT was based at the local hospital, and at the SN school - whichever oyu phoned, they were guaranteed to be at the other location! - both health and education will try ot claim that SALT comes under hte others' umbrella, due to costs.

nothing is ever simple.

stuff like statementing, and sencos etc all come under education. once you are known, and in the system, you will have a case officer, who is part of the LA education team.

Make that LOG.

You'll go crazy without one, and put in it some of the things from here that you want to research sometime when you get around to it.

Really, it is SO useful. Time slips by otherwise, with you sure that someone promised something, but not sure who, or whether a reasonable length of time has passed for you to chase.

With a log you can see exactly how long has passed.

Also, if you have left several messages for someone and they haven't returned the call, you can list the dates and times that you have left messages and get them to pay attention.

A LOG stops you from wondering if you are going mad, and is useful evidence for getting people to stick to what they are saying, or even improve what they are saying if they know you are keeping said log.

Silverfrog - I will call the council tomorrow (they only have a main switchboard number so will have to try that) - thanks.

StartingAfresh - I promise I will make a log. From what I've seen on here, it seems that you have to fight for everything so as you say useful to keep track of who said/did what. I used to have a CYA (Cover Your Arse) file at work

Oooh, I never heard of a CYA file, but yes indeed, that is what you'll need!

LOL. I know that it looks like a huge mountain to climb, what with understanding the dx, working out what it MEANS for you, your family and ds, and having to adjust your image of the future. Also the work that stretches out in front of you in terms of finding the support you need, the relevant people/strategies/schools/information etc. Did I meantion a log?

But, within no time at all it becomes a way of life. You'll learn fast and you'll adjust and you'll fill that vaccuum that exists right now with your worst fears, with knowledge, strategies and above all high expectations.

It's not the worst thing. But it sure feels like it at the moment I bet.

LOL, sorry. I mean the vaccuum filled with your worst fears, will be filled instead with knowledge and hope etc. as you figure it all out!

Sorry you're going through this, it is really shit.

All the suggestions above are spot-on.

Particularly, the Earlybird course as it was so helpful to meet other parents of ASD kids. Your local Contact a Family may well also have parent groups (ours do and they were very useful)

Someone said to me after the diagnosis that this was Ground Zero and that it would get better from here. And that is true, over time it gets better.

Don't do what I did and exhaust yourself with all the different therapies and end up nearly having a nervous breakdown!

I felt similarly lost and started a blog about it, if you're interested: strange-beau.blogspot.com

I suspected there was something different about my DS when he was around 18 months old - no speech (obviuosly not unusual at this age, but I felt I just couldn't reach him) Anyway, in time is realised it was ASD but it took 4 years to get to diagnosis. Even though I had known for a long time what it was, I was still devastated and burst into tears at time. So sad - and like you, 'what now? what will happen to him?' etc. I still feel like this sometimes.

Its only been a year for us,(he is now 6) and my DSs ASD is thankfully mild but things are slowly improving - he speaks from the moment he wakes until the moment he falls asleep!!! He has statement (20 hrs a week) and has stayed in mainstream school. He has learned to swim since the diagnosis (he would have struggled before the dianosis as we didn't know what support he needed to learn) and is fantastic on the computer and at reading. He is making friends although this is a challenge for him. He now has two special friends at school who perhaps sense that there is something different about my DS and 'look out' for him.

The dr who diagnosed my DS said whilst ASD is a lifelong condition, it changes over time. I am constanly told that he will learn to cope with his ASD. I am still very sad that he, and us , have been dealt this particular card but we are learning to get on with it. One thing I would say is take every bit of help you're offered - it can only help. Early intervention is key.Remember he is still your lovely boy,it will get better xx

Thank you so so much for your messages of advice and support - I really cannot express how grateful I am and it's great to know that I can get support here.

Bagpuss - that's so heartening to hear that your DS is a chatterbox - it must be the most wonderful sound in the whole world.

We (DH and I) are actually feeling a lot more positive today. I got the anger phase out of my system last night (crying at the injustice having "done everything right") but I know that is pointless and not constructive. Having read quite a bit on the internet this weekend, we are coming to the realisation that it does appear quite mild compared to many cases and we have a lot to be grateful for (we don't appear to have sensory/major change issues) and so I guess the outlook is good. The main thing is his speech and social interaction which I'm sure we can do lots for.

Whilst I'm in this positive mood , it did occur to me this morning that I'm at the bottom of a mountain and have a massive climb ahead of me and how will I find the energy? I'm just trying to focus on small steps at the moment and like Frosty and londongirl said, don't try and do/think about all the therapies at once.

I did call the local council today which initially made me think here we go - tried to put me through to social services, then educational welfare who cut me off. I got back through to them and the 1st person I spoke to (having just explained that he had been diagnosed on Friday) said "Is he registered disabled? You could try contacting Mencap" I then put my Mumsnet SN support board hat on and said "No I don't want to speak to an outside charity, I want to speak to someone in Newham SEN as it is now their responsibility to ensure my DS gets the support he needs" (felt quite proud of my bolshiness

Anyway got through to someone who was a link officer and offered to come for a home visit and refer me to the Learning Support Service. I mentioned that my son attends a playgroup at a Surestart centre and was thinking of talking to one of the staff there who seems to know a lot about autism and who we get on well with and it turns out she is also a Link Officer and can do a home visit and the referral which is great. This should happen this Friday or next Monday.

It does appear that despite the private dx, we will still have to have the mutli-disciplinary assessment at the local CDC but I expected that.

I have also found a contact for our local branch of the NAS and will contact them and find out about support and the earlybird course.

I mentioned to the link officer that the Paed had said he needs intensive, specialist SALT but she seemed a bit woolly on what they could provide so am wondering if we might have to go private for that.

Anyway, that's a bit long but thanks all so much.

p.s. StartingAfresh - I of course logged all of this in my new shiney notebook!

Yay!

Gosh, you learn fast doncha? What with hanging on the phone through a variety of fob-offs to end up with a home visit.

Well done you!

Way to go Howliscream ! I am in SW London and am 2 months into ASD diagnosis for my DS who is just about to turn 3. I spent an hour and half on the phone to night to a total stranger (a friend of a friend of my sister in law) who has a 4 and a half year old who was diagnosed a couple of years ago. I have been kept afloat so far by the amazing kindness of strangers on MN and in RL who have been through something similar and who have advised and propped me up when I have been feeling totally down and alone. You definitely came to the right place and there are a few others on here who have just had or know they are about to have the same news so you are certainly not alone. You are doing really well. Stay around here - its a safe place to be