3 yr old with severe speech delay and poss ASD/HFA - advice required

[Toppy]

Hello - I am new to these threads but have been reading the archives for about a month now trying to educate myself about what might in store for us. Mumsnet is the best place I have come across in all of my googling for advice on our particular areas of concern. Here is our background and apologies for the lengthiness and incorrect use of acronyms

DS1 is almost 3. About a year ago the HV came to visit us to see my newborn baby but was more concerned with DS who was 20 months at the time. He was not speaking or responding to his name. I suspect she noticed other things too but did not mention them. She referred us for a hearing test and a SALT assessment. He had mild glue ear which cleared twelve weeks later at the next test and we were given 4 parent and child interaction sessions (involving me being videoed playing with DS then feedback on hope to encourage talk from ST). The ST had other concerns and referred us to Chelsea and Westminster Child Dev't unit (he was now 2) who had no concerns other than speech delay - they discharged us and referred us back to the SALT unit. Three months later I did ITTTT course and then a further three months later DS has had 4 sessions of one on one SALT. We have just been asked to leave the latest course of small group therapy - SALT said it 'was not for him' and that he has other issues on top of severe speech delay.

He has now been referred back to the Child Dev't centre. All the professionals who have worked with him have basically said off record (and beaten around the bush and trodden on eggshells) that he has ASD. I have just watched a YouTube video of another little boy with ASD and am in shock at the similarities between his behaviours and those of DS which at the time I thought were rather sweet and a bit of an affectation. I have hard some dark, lonely and very tearful moments this week. I am struggling to accept that he may be given this label. I know it does not change him from the sweet, funny and affectionate little boy he is but I am the wrong side of experience at the moment and am having little panics about all sorts of things along with a strange sort of grief. My additional pressure is that unfortunately my DH does not think I am being pushy enough. He is very old school and thinks we should go privately but I have been assured by the SALT that we need to go NHS to get a Statement and funding for one on one which his nursery (only two mornings a week as finds it stressful) also say he needs.

Although it sounds like we have had lots of attention in the space of a year actually it has been very little and the people he has seen do not seem to communicate with each other. I feel like no-one is in charge. DS has made very little progress despite me fully embracing ITTTT. He has about 5 words which only I understand ('n' is more) and one which is understandable (bubba for bubble). Having been assured back in July that he would have the full Dev't Assesment and diagnosis within the year I have finally found out from a very jobsworth lady at the unit that it will now be January. DH has hit the roof - basically saying I am not doing enough and that he cannot chase himself as he has to work all day whereas I do not (is of the opinion that SAHM = lunches with friends all day !). These conversations where I update him end up in massive rows - well me being slated basically. I have now decided that the time is right to introduce myself to this board. I really need a bit of support and think I am going to have a lot of questions about diagnoses, implications, statementing process etc

My first question is this - is it worth going private AS WELL as being on the NHS waiting list ?
SALT has recommended I try Christopher Place in London or call the Royal College of SALT for a reccomendation but would these SALT places cover ASD diagnoses? (she mentioned HFA which I nothing about).

Basically has anyone gone privately in London as well as NHS - where and was it worth it. Any other advice form anyone who has been in a similar situation ?

Thank you so much for any replies and please go easy on me - am a bit nervous posting on these experienced and tight knit threads and also feeling super fragile about the whole thing whilst knowing I really need to have balls of steel to deal with what is to come.

Hello Toppy. This is one of the best places you can be right now as we all understand how quite frankly you'd really rather not be.

It is a bit late for a lot of people to respond but I'm sure you'll get information and support galore as and when you need it.

You've raised quite a number of things in your OP and I'll get through them but firstly:

'My first question is this - is it worth going private AS WELL as being on the NHS waiting.'

If you can afford it, yes. One thing to always bear in mind, is that investment now can save you a fortune in the teen years, if you are able to manage it.

Insist on staying on the NHS waiting list. Suggest to everyone who asks that the private assessment is your entitlement to a second opinion, that just so happens to come first. I would recommend holding on to the NHS one too however.

am a bit nervous posting on these experienced and tight knit threads and also feeling super fragile about the whole thing whilst knowing I really need to have balls of steel to deal with what is to

Oh love. Don't be. We're a bit no-nonsense but that is a learned reaction to being waffled at and going round in circles, as you have already experienced for yourself.

Your DH sounds very difficult to handle at the moment. Many of us very old hands at this whole thing (not me, but I did get a lot of experience in a short space of time) and I can assure you that with infinate resources you can sometimes meet barriers of steel that just don't come down for the asking.

Men sometimes think that problems simply require 'fixing' and he wants it fixed instantly. Sometimes having a child with difficulties offends their sense of virility too. Try not to be hard on him, although make it clear you will need a lot of support, not criticism to get the best outcomes for your child.

Hi Toppy.

I can't really help with your q's but I wanted to answer your post. My DS1 now 5.1 was dx with ASD when he was 3ish but we had been in the system since he was 2. I actually first raised my concerns with my HV when she was round to visit my newborn DS2 when DS1 was about 22 months. TBH I didn't understand the system and we got lost in it/referrals not made etc and it is hard to keep track of something you don't understand especially with 2 young DC to care for.

helpwithtalking.com has a list of private SALTs in your area. it is true for the stat assessment you will need NHS/LA input, but for the here and now if you can afford it and can find a good SALT for you, you may find it v helpful. (unfortunately living rurally we couldn't find a private SALT to help).

I only joined this board about 2 years ago and have been an infrequent poster who has namechanged a few times, but I have always got really helpful advice, so do keep posting. It can be an isolating time going through referrals, dx process etc and I really found this board invaluable (and still do).

evening, so sorry your experience so far has been so bad and that your dh is putting on so much pressure too :(
It does take a long time to get a dx in most cases but not always. I would go private but stay on NHS too, some people arent willing to consider private dx as they feel "if your paying for it they will give you what you want"

Are you in London? There is a lot of support services in UK but seems to be a postcode lottery

Jan isnt too far away and in the meantime I would start making personal notes about your DS behaviour, we did a daily diary, because they will ask for examples and its hard to remember.

Please do post as much as you need on here, the girls are great and been so helpful with my DDs.

Your husband needs to understand that kicking off at proffessionals doesnt help anyone and waiting lists are terrible.

Have a look at the NAS site and also ask your SALT and HV for practical advice in the mean time.

Goodness I cannot believe 2 people actually read my novella length post at all let alone at this time of night - thank you so much.

DH thinks we could pay a private Paed (with what I don't know) to co-ordinate everyone else. I have explained until I am blue in the face that it does not work like that. Its such an extra element of demoralisation but you are right Stark - his seemingly bully boy behaviour is just frustration and upset at what we are facing.

PolarEyes - your experience seems to be exactly a fit with mine. How is life 2 years on. One of the hardest things I am finding is the not knowing what is in store. I have absolutely no idea right now where we are going.

Is there anyway your DH would listen to HV? SALT?
You'd be surprised howlate some of us are up ;)
Private SALT would be reasonable and if you can afford it worth it too.
We started dx for DD2 process back in Dec 2009 and we have full assessment next week.

Has anyone suggested you apply for Disibility Living Allowance for your DS? this could help towards costs such as funding private assessments. The forms are a pig, but you can get plenty of tips from here and the Cereba site.

Life is pretty good (ignore my recent posts on this board about school issues though!). If I could go back in time I wish I had:

Known about PECS - www.pecs.org.uk/
Chased up SALT appts
Put all communications in writing, even if just to follow up with "for the sake of good order I am writing to confirm the following was agreed in our conversation of xx"
Found a decent preschool first time round
Read Hanen's More Than Words
Got in touch with my Sure Start Centre earlier
Found out about the Early Support team who help families with young DC with additional needs

If you can brave finding local support groups for parents of children with disiblities, you may find that is where you will get info on local services.

Sorry your husband is being difficult, I've had a fair few disputes with mine over DS1. Him coming to courses/meetings etc helped a lot, though it is easy for him to get time off as he's self-employed. (not great for paying bills though!). The whole system is so random and disorganised it is hard to believe how difficult it is to negotiate until you are thrown into it.

Toppy if I have written about what happened with DS, it would have been exactly the same as you. Our HV raised concerned about DS when she came to visit DD at 20 months and after lot of to and fro between the SALT dept and CDC, he was diagnosed finally at 2.5. I can't say we got much help even after the diagnosis, in fact, nobody in NHS even pointed us towards private SALT. We had no idea what ASD was, therefore, wasted a year before we started ABA (a fortunate encounter with a Board Certified Supervisor and psychologist). Well DS was diagnosed with Classic autism, now at 5.4 he has few traits of ASD left, still speech delayed, does some stimming if left alone, but slowly catching up. His understanding is nearly on par with his peers, academically he is very able, it's his social side that keeping him back, but we are working on it. So if you can afford to pay for some ABA sessions, I would highly recommend it, as it was a godsend for us.

Hi Toppy.

It's nice here - we're all in the same(ish) boat and there's a wealth of experience you can use here, so stick around.

My DS was pretty similar to your by the sounds of things. Me and HV were concerned about speech and got SALT referal.

NHS provision out here is sparse, to say the least. Lots of my DS (6) behaviour was down to frustration due to language issues. So we went private. Found a guy who had worked with ASD kids (this was pre diagnosis I should add) and he has been brilliant. We still got the NHS stuff but the private SALT has mediated with DS' school and keeps on top of their speech and lang efforts.

The speech therapy did help. We still got a diagnosis of ASD (which we're still getting our heads round) but his communication is so much better and he is calmer.

I would add that the NHS provision is now so limited here that my DS got SALT as part of his statement and they LEA pay our private guy to supply it.

Honestly - our SALT guy has been a gem and there's no way DS would be where he is without his input and badgering of the LEA and school. Worth his weight in gold.

GOSH, I am afraid your DH is doing what in the civil service is known as "playing the man, not the ball". He is taking it all out on you, because he can't face the autism possibility. Plus he is thinking that SEN is like a work-type issue - take enough action points, get the right people round the table and the issue will be solved. Show him this if you want, from someone who has been fighting the system hard for 5 years. The truth is that the "state system" has very little to offer in my opinion. I would def go private - we used Dr Daphne Keen , and if your DH has BUPA you can even get the diagnostic meeting paid for (though no subsequent appointments.) Where are you based, if anywhere near London we could meet up as you sound like me 4 years ago . Can I also recommend that you look into ABA - it was a life-changer for us. Big hugs, it is a hard path and your DH really should bloody join you on it rather than just carp from the sidelines!! At work, my arse. I used to have a huge City job, and what I'm doing now as a SAHM to two, one of whom is an autistic boy is several degrees harder!

'Cherchez la Mere' is very common unfortunately. I don't want to make too many excuses for your DH but if he is not regularly seeing other children as you do and is not really seeing how big the gap in development is, and if you then add in all the forests of folklore and fairy tales about ' the wee boy in the village who definitely did not speak until he was 4' etc - then it can be hard for men to see the enormous bit of wood in front of them. You are further down the road to reality, hopefully he will join you although at a slower pace. Do you have anything in black and white about the assessments that you can show him?

Hi Toppy and welcome to the board. Am rushing out the door but wanted to say hi-will post later x

Hi Toppy - Your son sounds adorable and you sound like a really lovely mum doing all you can to help.
I dont have any information as to wheather going private is better or not but im sure posters on here will help you.
I have a ds who is 2yr 8montsh I am in the exact same postion as yourself but about 6 months behind in the process so maybe you can help others.
It is a frustrating time and you feel like no one knows how you feel (with exception to mumsnet mummys)
Just wanted to say hi and that you are not alone.
x

Wow - I so came to right place. Thank you so so much for all of your advice and kind words which mean a lot to me. There are not many people I can talk to about all of this and certainly no-one in the same boat. I can't believe how bang on you all are in your words of wisdom esp when it comes to DH. Am kind of regretting using words like 'bully boy behaviour' earlier as I will never be able to show DH these posts now without risking an eruption. Oh well.

There is a lot to digest in all your replies and I will spend any nap times googling them all if laptop lasts out (I spilt wine on it on Monday and it is not happy)

Sickofsocalledexperts - thank you for the recommendation. I have already pinged an email to DH, who likes to communicate that way, with her link so he feels I am listening to him and acting on it. However, shock news for me this morning is that C&W Child Dev't Unit called at 8.30am and asked if we could come in next Thursday as someone had cancelled. I'd made a big old fuss on the phone earlier this week of asking to be first on the list of the cancellation replacements so already feel there is a little bit of truth about shouting the loudest which is not fair but I am not complaining.
I can't quite believe it. DH is actually going to come to this appointment ('do you need me there?' - er YES !) so hopefully we will have a diagnosis and a plan of action by the end of next week. Or am I being very naive.
I think whatever the outcome it is a step forward and that it what we all need - steps forward

Can't leave a long post right now, but wanted to say that my DS has speech delay, sensory integration difficulties and ASD.

He was diagnosed at the age of 2 for speech delay and got the full diagnosis of the rest last year at the age of 4.

I can't speak for London but I am in the home counties and the NHS and local Education authority have been wonderful. You have to be patient as waiting lists are long - but once things started coming through DS ended up having speech therapy, OT sessions and regular ENT appointments as well. We also see the paeditrician twice a year.

AT school,he started year one in sept, we were allocated a educational psychologist once we were on the paediatricians list and he is also on the SEN's list at school.

Just last week, we got his Statement of Education special needs approved!!! SO he will have the support he needs.

It feels all very desperate and hard when one first gets a diagnosis and in my experience, the husbands do not deal well. Deep down they don't want to accept that their son has any issues. Even my dad ( DS grandad ) has been in denial and only now is coming round to admitting to himself that DS has got difficulties.

I think your DH is acting that way because he is finding it hard to actually accept it deep down. In time, hopefully he will calm down and start to open up and understand.

GOod Luck! It is a heartbreaking at first and rough ride, but I am sure you will make it all happen for you DS.

Hi Toppy

Like everyone else says, welcome to the board - you have done a brave and very important thing by admitting that ds1 may have difficulties. I went for over a year in denial, hoping my ds would 'catch-up' etc, then finally accepted (before we got a dx) that he did have ASD (HFA). It is a truly awful time, we all know exactly what you are going through atm.

Re the problem with DH - again many of us know exactly where you're coming from. My DP refused to admit for a year that there was anything wrong about ds. Of course it's much clearer to us (if we're SAHMs) as we see our dc with their peers so differences are much more evident. sickof has it absolutely spot-on. "work, my arse. I used to have a huge City job, and what I'm doing now as a SAHM to two, one of whom is an autistic boy is several degrees harder!" I could not agree more! But once he's realised how the system works, and has accepted this is a marathon not a race, I expect he will ease off you a bit. In the meantime suggest that he spends half as much time as you researching everything, making the appointments etc, and taking time off to give you hands-on support too, then he'll understand the difficulties

Practical things: this is a difficult time as there seem to be so many different agencies/professionals involved and it's hard to know who is leading things. However, once you have a dx things will become clearer.

In the meantime, I would definitely look for a private SALT with expertise in ASD.

I also absolutely second what pp have said about looking into ABA. We started a programme (using the Verbal Behaviour approach) before ds was diagnosed, as we realised we didn't have time to waste, and it can take a while to set up. It has been absolutely the best thing we could have done, and the progress ds has made since starting just two months ago is astonishing. It is expensive (with consultant, supervisor and tutors it works out around £25k pa) but if you can afford it, and think it suitable for your ds, it is one of the few methods of early intervention that shows clear, measurable results. It will also help you and DH feel that you are actually doing something too. (ime the passive waiting for other people to do something to help is really hard, and then you realise that the 'help' you may one day get barely touches the surface of what your dc actually needs in day-to-day life.)

Is ds due to start primary school Sep 2011? If so it would also be worth applying for Statutory Assessment (to get a statement) now. Look at your LA website for details how to do this. You will get lots of support and advice from this board about how to do it.

Try not to worry too much about what the future years hold (easier said than done I know). Focus on the next six months/year. This is a very hard time for you, but I would bet that in say 2 years time it will be nothing like you think/fear atm. A 'label' means only that you can get help - ds is who he is, your lovely little boy.

Welcome...

Great news about the appointment!

When we had our appointment in the summer it was a few hours of questions and a SALT assesment as they observed DDs play...and DS bumped his head and screamed a lot! They will ask about early development milestones, language development, general behaviour, social behaviour, sleep, eating, toileting, routines, rigid play, sensory issues and obsessions. Tell them as many details as possible, take your own notes in and a book to write info in as the meeting may be a bit of a blur. For us they then went away for 20 mins and then gave us a verbal diagnosis of ASD...I didnt cry I was expecting it but it hit me later. We then got a big booklet about ASD children and referred to do a two day workshop on ASD in the centre. Formal diagnosis was some time later as we had to go back to see the psycologist for cognitive testing. If further appointments are mentioned ask directly about dates and get them to write it on the notes...I did and they sent an appointment for several months later...I rang and they checked the notes and changed it to two weeks later. We then waited 4 or 5 weeks for the diagnosis report....which again I had to chase up, it was on the desk for two weeks so I went in to collect it.

As for a plan...again it can be a slow process or sometimes not a lot happens after diagnosis. Get early years Inclusion involved at nusery, continue with SALT, research and read as much as possible. Apply for DLA...with help as the form is very difficult and emotional to do, Cerebra guide and mumsnet are essential.. Keep a diary of behaviour and issues, see if the childrens centre has a specialist nusery setting to observe and advise...ours does but DD is 5.

As for DH it can be tough and take partners a bit longer to accept, my DH has sort of accepted it now but still struggles with using simple language, not getting angry and shouting and even referrs to her as 'ILL'.. It can be a strain on a relationship as its an emotional experience and can be quite isolating. You can get referred therapy for this as parent...we havent but I think a lot of our issues were there before the ASD took over our life!

Hope that helps?! Good luck! and remember vent, cry, moan and share on the SN board it will make you feel much better! :) ...it does me!

Ah it took so long for me to write that (interrupted by dd), have x-posts, seen that you've got an appt with the SDC next week. Great! You may or may not get a dx on the spot - but push for one if you feel you'd rather have one in order to access help.

Hi Toppy. Welcome to the board :)

Your DS sounds very much like mine was at that age. He is nearly 4 now but on his third birthday he only had about 6 words he could say and not very clearly. I did the More Than Words course which I found really good (Its by the same people who devised ITTTT). Giving him a reason to communicate definately helped us - we did it with bubbles and jumping first and it seemed to click after about a month.

I can sympathise about your DH to - though mine is of the opinion that one day DS will wake up and he will be a 'normal' little boy with no problems, academically where he should be and lots of friends.

Feel free to ask anything - there is always someone on here that has an answer :o

Good news about the appointment. Don't build your 'hopes' up about an immediate formal diagnosis though. I have no idea how things work in your area but in our area, it was a very long strung out process - and ds is not a borderline case by anyone's standards ! Plans of action will not come from the professionials either although they may mention further referrals. I agree Hanen 'More Than Words' is an ideal starting place and have a think about VB/ABA too as this is a great way to teach the basic skills your ds needs at this stage of development.

Toppy If you click on the side of the post you don't want to show your DH MNHQ will remove it for you.

I know you only have a short space of time to do the research etc. but if you definately know you are going down the diagnosis route the most flexible diagnosis is simply 'ASD'. Not Aspergers, not High Funtioning Autism. The are both ASDs so you are not denying them but if that gets written on your report it can sometimes exclude you from the support services that have misguidedly decided that those two things mean 'less difficulties'.

I would also suggest that you investigate ABA. It isn't for everyone but if it isn't for you I think it is important to have a rationale for why. The skills you learn on even a short burst of therapy can be very useful parenting skills for the rest of your ds' life.

Oh, and lower your expectations of an 'action plan'. Unfortunately developmental disorders are the remit of the medical professionals to diagnose, but to the educational professionals to 'treat'. As such a medical professional will be reluctant to make recommendations for the educational professionals to follow.

It's all a bit of a mess really and is a looooooong process.

So, the best you will 'probably' get, is a referal to an autism outreach type service from the education department, who will then do their own assessments and tell you what you need. What you need will have financial implications so it can often be played down.

For all the reasons mentioned above, it will do you many favours to ensure you have every conversation, promise, telephone call in writing.

Even if you just write to say 'Thank you for the call yesterday, for clarification and to make sure I understood correctly, you informed me that the waiting list for x was 6 months long/there are no support groups in my area/we don't give statements to under 5s/my ds isn't very severe etc.

And if you don't write, at least log the call with the date and the person you spoke to. You can also include in the log, things that you find out about but don't yet have the time to investigate to make sure you don't lose the details etc.

hth

HI Toppy,

I have not yet read through all the replies but sounds like you have some good advice already.

Just wanted to add - we live in london and are under the same health centre at c&w

Also My dd (2.10 Global developmental delay - no speech yet!) has been having private therapy as well as NHS since she was 2 and it worked still works really well for us.

Another coincedence - dd now goes to a nursery group at Christopher PLace. For us they have been a lifeline. I am very impressed with the work they do with DD and she has made lots of progress there.

So if you have any questions Let me know - With regards to your DH - mine has been the same.......its really annoying - Its hugely stressful......yes he needs to be there for the appts or he will never understand what is going on or get how frustrating it is for you.

I am in the same system - a bit further along so if you get stuck let me know

Toppy- just thought i would say hi, your ds sounds very similar to my dd2, our GP became concerned when she was 20 months old after she went for a check up, apparently she did not respond like a normal child when he examined her. Up until them we didn't really have any concerns, her sister already had a diagnosis of Aspergers but dd2 was so different we didn't even think about the possibility of her having ASD. By the age of 2.5 she was still not talking and we were referred to SALT who managed to get dd2 a place at a special needs nursery. At the age of 3 dd2 was diagnosed with ASD.

Dd2 recieved verious therapy at nursery including SALT, ABA and music therapy, at the age of 3.5 dd2 started to talk single words. She's now 4.9 and started school in september, her speech has improved a lot and she is communicating with us and other children.

The past 2.5 years have been tough but dd2 has changed so much.

I hope you manage to get some answers and i hope you find mumsnet as usefull as i have. xxx