Social communication disorder - advise please

[tigerpug]

I have a very lovely 3.5 year old DSwho has recently been assessed and diagnosed with a 'social communication disorder'

A bit of history... I had noticed strange behaviour from a young age, at Baby Sensory classes when he was 6+ months whilst all the other babies where watching the puppet shows/light shows/ playing with spaghetti etc, my DS would (every week) disengage with it all. When old enough to crawl he would head to the back of the hall and play repeatedly with a cupboard door (open, close, open, close). At another music class he would refuse to sit still even for a brief moment, when all the other children seemed to watch the show for at least a while before wandering off. He would cry and cry if i put him down, and once crying it was generally impossible to stop his cries until he was picked up and fed i.e. a smile, song or tickle would never stop his crying.

At toddler groups he wouldn't engage in activities, following his own schedule but rarely engaging with anything for more than a minute or so. With so many activities on offer every week there wasn't one that would ever seem to 'grab' him. He is very headstrong, and follows his own agenda. He hates crafts, and i have struggled to get him to even play with felt tips. He loves music, bikes etc.

That said, his speech is stronger than expected for a 3.5 year old. He is kind and gentle, sometimes very full on i.e. energetic, but generally as he has got older i am finding him easier

Once he started pre school, his 'repetitive' speech was picked up by his key worker and via a GP and key workers referral we got him in front of a behavioural consultant for a half day assessment. Consultant said his language/physical skills were very strong and he scored higher than he should for his age (not sure what test this was, but it was positive to hear). She flagged up his lack of imaginative play, and his communication. He would only tell her what he wanted to say, he normally refuses to answer questions, even very basic ones like whether he is enjoying lunch, who he played with at pre school. Consultant says he is not severe enough to warrant further investigation at this stage. She refers to SENCO who award the preschool with 6 hours a week funding for DS which will be used by his key worker who in trained in SALT

12 months on, DS spends time at pre school with key worker one on one with him to pull him back into activities that he would have abandoned beforehand. She writes in a book at every session what he has done, which i read and then can try and talk to him about things e.g. today he went for a walk, saw a dog, bought an ice cream etc.

Am very grateful for this help, but we dont seem to be going anywhere. No improvement, as agreed by KW. No contact from any other education/medical teams. After every session I try and chat about his day, he simply will not/cannot open up, we never just 'chat' and i feel like i miss out on so much of his life. He has no friends because he has such difficulty interacting. I am so upset, and some days just feel heartbroken for him, as he would love some friends, he loves being around people. He starts school next Sept and I feel that this year is crucial for him to get any extra help he can. But where do i turn.... a diagnosis of social communication disorder doesn't help me in any way. I dont understand what that might mean. Is he autistic? I have no experience of autism but from reading about it he doesn't have sensory issues, or a few other recognised symptoms.

Im sorry, this is turning in to more of a rant than anything else. i am frustrated and it worries me every day. Sometimes I feel that it is taking some of the pleasure away of being his mummy, because i thing every strange bit of behaviour, every lack of conversation, and every playground interaction is the symptom of a bigger issue whack no one will talk to me about. Sometimes i feel the healthcare professionals do have a much better idea of what it is, but cant say until it is able to be fully diagnosed when he is older. But that leaves me hanging here, completely helpless but wanting to do what i can for my son.

Breathe.... sorry, I have been meaning to write this for such a long time and now its all just tumbled out into a very jumbled post. If anyone has any advice, or ideas on where to turn i would appreciate your help

Didn't want to read and run but I can't do a decent response tonight - your DS sounds very like mine, and mine has a diagnosis of "difficulties with social communication... in keeping with a mild Autism Spectrum Disorder."

Hang in there, someone else will post soon I'm sure. I'll come back tomorrow but I'm new to all this (diagnosed in March) so may not have anything useful other than handholding!

Like Fish I can just be a handholder but will happily do that! DD is 3.8yo and currently in the arena of "social communication disorder" although we are sitting on the waiting list for an autism assessment to rule that in or out. So far I have picked more up from these boards than from any of the team we fall under. Our paed was very good and advised to use much of the research or stratergies as with autism-he said even if it turns out to not be that, it won't do any harm and should encourage social communication. DD does seem quite responsive to some things trying out in nursery, although things very much need to be spelt out to her still continually. She has so many wonderful traits I do worry constantly these things will become lost in either future anxieties as she tries to make sense of things. What you said about sometimes the pleasure being taken out rings so true...I would just LOVE to have a proper conversation with DD, not just have her recite an entire Angelina Ballerina book at me. I keep telling myself she is still young....

Thanks Fish and Amymouse. It was a really big thing for me to post on this forum, probably because it meant being open about things that I find really upsetting and uncomfortable. I am quite an open person, but with this subject I cant bring myself to talk to friends or 'mum friends' about it, because it makes it feel more real.

If you were me, what would you do? Who can we turn to for more help, guidance etc. I want to make sure we are being proactive. Who can investigate it and how do we get a diagnosis?

Amymouse, your DD is 3.8 and is going to have an 'autism assessment', we were told that DS (3.5) is far too young to do this, or to be diagnosed. Who should I speak to if I wanted to have a similar assessment?

I dont want to force a label on him if it is too early, but I do want to understand more about what is going on. I feel as though all the health care professionals, and his keyworker are all holding back from giving me their opinion as they dont want to misdiagnose. However, we feel as though we are left without any real understanding of what it might be, and are starting to get more and more concerned

You have both been wonderfully helpful, its good to feel that we aren't alone finally

Social communication disorder is a diagnosis in it's own right. Sadly I think most of us on here have eventually realised that there is no wonderful team of professionals waiting to swoop in from the wings and help our kids. A lot of meetings, reviews and waffle - yes. Concrete direct face to face work with our child - Nope.

Any and all work you can do yourself around language and interaction at this age will be helpful. Start by keeping a diary to see if you can establish what MOTIVATES your child to interact - be warned it probably won't be anything you expected .

Its human nature to avoid that which we find really, really hard and to focus on those things we enjoy. Once you know what truly motivates, then you have a hook you can manipulate to open up the channels of communication and start teaching precise skills in a way that's fun for your child.

To help you identify motivators - see if you can get on a course at treehouse school for introduction to applied behavioral analysis.

www.ambitiousaboutautism.org.uk/page/what_we_do/training/training_programme/introduction_to_aba.cfm

Or

www.coursera.org/course/behaviorprinciples This is a free online course that will give you a solid introduction to the same concepts.

I did a lot of non-verbal stuff with my lad to encourage his latent desire to interact at pre-school stage. Sing and sign every weekday morning (signing nursery rhymes), arts and crafts where he could work alongside me, observational walks in the park, a very gentle dog. identifying what motivated him was the mountain I had to get over before anything else though.

Of everything the dog has been the best therapy he's had as she encouraged him to interact with other children, and of course acts as his biggest sympathiser when life is tough by cuddling him in the corner.
www.petsastherapy.org/ the dogs trust runs workshops to show how parents can help their children with communication disorders and helps with animal selection.

It was worth the years of plodding as DS is able to keep and retain friends now.

Hi tigerpug. Just wanted to add a bit more: our paed told us explicitly that she was going to diagnose DS with ASD as it would give us access to a greater range of help and services than if she merely put him down as having some sort of communication disorder. She felt he was right on the cusp of the spectrum, particularly as he doesn't really present with any repetitive behaviours (though his communication problems can be quite severe some days). We were a bit worried about labelling but we can see the advantage of having a proper diagnosis, which can always be revised in the future. Maybe you need to ask them to decide one way or another? Could your GP help?

As regards support, thus far we've started a social communications workshop which is aimed at developing DS's skills - he's verbally pretty good but needs help with things like identifying emotions, observing the social niceties (like saying hello/goodbye) etc. We're also going to be working with the early learning coordinator, the SALT, DS's nursery and DS's primary school SENCO to work up a transition to school plan as well as an individual education plan for when he gets to school. It's all on the understanding that if, when he's actually there, it turns out he doesn't need the level of support that's planned for, then all well and good. But we're preparing for the worst and hoping for the best! (He also has some longterm constipation/soiling issues which complicate things a bit...)

Locally it's the SALT who is our main point of contact at the moment, as she seems to have overall coordination responsibilities for the various programmes for ASD children. I guess that may change as time goes on.

I know what you mean about posting on this forum. I'm really glad I have done so, but initially I was reluctant because it meant being honset with myself about what was happening to our family. I have forced myself to be open about it because I couldn't see any other way forward, but it has been hard - mainly through my own fears. In reality I've been blown away by how sympathetic, accepting and helpful most people have been. (Even strangers - I got tutted at a bit in the supermarket the other day when DS was having a wobbly about the moving staircase, but when I smiled at the tutter and said "sorry, he's autistic" they were immediately sympathetic and said "oh, poor little chap!")

I still have days where I go through the entire spectrum of grieving (anger, denial, bargaining, acceptance etc) but it is getting easier. Going to the groups has been good because all the kids there are behaving in similar ways, so it's not just DS sticking out like a sore thumb, and all the parents can feel like we're among friends. I've been trying to find out if there's any kind of local support group where parents can just get together for a cup of gin tea, though no luck so far.

Lots to read and digest here. A massive thank you to everyone who replied, I've got lots of reading to do this weekend....

Hi Tigerpug

I just wanted to say your experiences with your DS mirror mine almost exactly. He got diagnosis of social communication disorder at preschool (they always seemed a bit out if their depth with him).
He started then in Reception at a different school where they have been far more supportive and proactive and we now have a diagnosis of high functioning autism (would have used to called Aspergers probably).
It's been a long, hard, emotional journey but I honestly do feel relief now. It feels like there was a reason for all those difficult times at toddler groups etc when I left nearly in tears wondering where I was going wrong!
Plus now when he has a freak out in public instead of feeling all panicky I take a step back and hold my head high and think well this is just his way of coping in a very anxious situation and don't try and force him to 'calm down' like I must have always used to do.
However, it must be said that there hadn't been anyone pr

Damn pressed send!
Professional rushing in to help - this forum had probably been the best place!
I too found it VERY hard to talk to friends about, and if I did sooo many times they would say the classic 'well he seems normal to me, so and so does that' which I know is well intentioned but made me feel worse, and like they didn't want to hear my worries! So I ended up avoiding quite a lot of situations where I knew things might get hairy.
But now I know it's not all in my head, all his caregivers agree!

Anyway, good luck, hope you find it as helpful as i have done on here. It's good to know you're not alone!

Hi Flook,
Thank you for your reply. Reading it made me quite emotional, as your experience sounds very close to ours. How did you go about getting that diagnosis? And how is your DS doing at school now?
Thanks

Hello again!

Well he's actually doing ok at mainstream school, he's very academic (especially in maths, he's about 2 years above the rest of his class), so actually enjoys the learning part of school and really doesn't have or need a lot of support in that part.
Where he struggles most is during 'unstructured' times, so free play, playtimes, dinner times etc.

We only actually got his diagnosis very recently so are still working with paediatrician / school about what support he should have when and creating his IEP (plus not sure they are even called this anymore, the whole system is changing at the moment and I feel this is one area I don't fully understand yet).

DS has actually been under the same paediatrician since he was just under 2 for various development concerns. She had always told us he'd be 'on the spectrum' but we all decided to take a bit of wait and see approach (DH was very anti diagnosis for a long time but that's another story!).
It become apparent at preschool he had 'social and communication delays' but as I said they struggled to deal with him really (it wasn't a great experience for me).

School though have been great (his teacher is the SENCO so that has helped). They filled in reams of observation documents for the paedtrician, then he was observed at school, had a meeting with me and DH where we're told yes he has HFA. But he would be at the 'mild' (their words) end, and as so bright he could very well learn to 'cope' bit all recognise that the earlier the intervention the better.

That being said I think I expected a team would spring into action, but no it's been very slow. Still awaiting the actual letter with diagnosis written down, and I'm supposed to be going on various courses which I still haven't heard from (despite chasing up!). But I feel stronger in myself about it all.

Our biggest area of struggle has been after school care as I work 3 days a week. We used to have a wonderful childminder who we had to leave when DS started school, and since then have been through 2 other carers that couldn't cope with his behaviour which I found v hard and thought I would have to give up work. Have now got more of a nanny who picks him up from school and brings him back to our house which is working out better (but v expensive)

The turning point for DH in it all was when his parents said they thought DS was like the boy in Curious Incident of Dog in the Nighttime. Once he realised they were 'on board' he found it easier to accept and we clash far less on how to handle him which has made a lot of difference at home as well. The paediatrician has handled him very well also.

Not sure if that is all very clear and helps answer your Qs at all - typing on phone which is never that easy!

I think it does seem with children like DS who can manage (but can still be incredibly high maintenance!) there is a bit of a wait and see approach, which I never felt quite comfortable with but suppose maybe just wasn't confident enough to challenge until I had the backing of school (and evidence of struggling childminders who made me realise just how much I'd adapted everyday life to cope!).

Keep me posted how everything goes. Life is easier now he's 5 and a half compared to 3 (but there are other different challenges now. But it's easier to communicate with him now if that makes sense) x

Hello again!

Well he's actually doing ok at mainstream school, he's very academic (especially in maths, he's about 2 years above the rest of his class), so actually enjoys the learning part of school and really doesn't have or need a lot of support in that part.
Where he struggles most is during 'unstructured' times, so free play, playtimes, dinner times etc.

We only actually got his diagnosis very recently so are still working with paediatrician / school about what support he should have when and creating his IEP (plus not sure they are even called this anymore, the whole system is changing at the moment and I feel this is one area I don't fully understand yet).

DS has actually been under the same paediatrician since he was just under 2 for various development concerns. She had always told us he'd be 'on the spectrum' but we all decided to take a bit of wait and see approach (DH was very anti diagnosis for a long time but that's another story!).
It become apparent at preschool he had 'social and communication delays' but as I said they struggled to deal with him really (it wasn't a great experience for me).

School though have been great (his teacher is the SENCO so that has helped). They filled in reams of observation documents for the paedtrician, then he was observed at school, had a meeting with me and DH where we're told yes he has HFA. But he would be at the 'mild' (their words) end, and as so bright he could very well learn to 'cope' bit all recognise that the earlier the intervention the better.

That being said I think I expected a team would spring into action, but no it's been very slow. Still awaiting the actual letter with diagnosis written down, and I'm supposed to be going on various courses which I still haven't heard from (despite chasing up!). But I feel stronger in myself about it all.

Our biggest area of struggle has been after school care as I work 3 days a week. We used to have a wonderful childminder who we had to leave when DS started school, and since then have been through 2 other carers that couldn't cope with his behaviour which I found v hard and thought I would have to give up work. Have now got more of a nanny who picks him up from school and brings him back to our house which is working out better (but v expensive)

The turning point for DH in it all was when his parents said they thought DS was like the boy in Curious Incident of Dog in the Nighttime. Once he realised they were 'on board' he found it easier to accept and we clash far less on how to handle him which has made a lot of difference at home as well. The paediatrician has handled him very well also.

Not sure if that is all very clear and helps answer your Qs at all - typing on phone which is never that easy!

I think it does seem with children like DS who can manage (but can still be incredibly high maintenance!) there is a bit of a wait and see approach, which I never felt quite comfortable with but suppose maybe just wasn't confident enough to challenge until I had the backing of school (and evidence of struggling childminders who made me realise just how much I'd adapted everyday life to cope!).

Keep me posted how everything goes. Life is easier now he's 5 and a half compared to 3 (but there are other different challenges now. But it's easier to communicate with him now if that makes sense) x

Thanks Flook, it sounds as though you have all been through the mill. You mention adapting every day life to suit your situation. I was thinking recently how I would love a few days in other mums shoes, really to act as a comparison between our children's behaviours. It would probably reinforce how i feel and give me some more oomph to fight for time with SALT/Paed etc.

Its just the simple things that upset me e-v-e-r-y s-i-n-g-l-e d-a-y..... I would love for him to have some chums rather than be pushed out of the playhouse, or ignored by the other children at preschool.

It hasn't helped that we have recently relocated, and so most of my good friends with children, NCT friends etc are far away now. I need to get out to playgroups and meet some mums, that way he can have some playdates (even though i dread them!)

Hello again!

Well he's actually doing ok at mainstream school, he's very academic (especially in maths, he's about 2 years above the rest of his class), so actually enjoys the learning part of school and really doesn't have or need a lot of support in that part.
Where he struggles most is during 'unstructured' times, so free play, playtimes, dinner times etc.

We only actually got his diagnosis very recently so are still working with paediatrician / school about what support he should have when and creating his IEP (plus not sure they are even called this anymore, the whole system is changing at the moment and I feel this is one area I don't fully understand yet).

DS has actually been under the same paediatrician since he was just under 2 for various development concerns. She had always told us he'd be 'on the spectrum' but we all decided to take a bit of wait and see approach (DH was very anti diagnosis for a long time but that's another story!).
It become apparent at preschool he had 'social and communication delays' but as I said they struggled to deal with him really (it wasn't a great experience for me).

School though have been great (his teacher is the SENCO so that has helped). They filled in reams of observation documents for the paedtrician, then he was observed at school, had a meeting with me and DH where we're told yes he has HFA. But he would be at the 'mild' (their words) end, and as so bright he could very well learn to 'cope' bit all recognise that the earlier the intervention the better.

That being said I think I expected a team would spring into action, but no it's been very slow. Still awaiting the actual letter with diagnosis written down, and I'm supposed to be going on various courses which I still haven't heard from (despite chasing up!). But I feel stronger in myself about it all.

Our biggest area of struggle has been after school care as I work 3 days a week. We used to have a wonderful childminder who we had to leave when DS started school, and since then have been through 2 other carers that couldn't cope with his behaviour which I found v hard and thought I would have to give up work. Have now got more of a nanny who picks him up from school and brings him back to our house which is working out better (but v expensive)

The turning point for DH in it all was when his parents said they thought DS was like the boy in Curious Incident of Dog in the Nighttime. Once he realised they were 'on board' he found it easier to accept and we clash far less on how to handle him which has made a lot of difference at home as well. The paediatrician has handled him very well also.

Not sure if that is all very clear and helps answer your Qs at all - typing on phone which is never that easy!

I think it does seem with children like DS who can manage (but can still be incredibly high maintenance!) there is a bit of a wait and see approach, which I never felt quite comfortable with but suppose maybe just wasn't confident enough to challenge until I had the backing of school (and evidence of struggling childminders who made me realise just how much I'd adapted everyday life to cope!).

Keep me posted how everything goes. Life is easier now he's 5 and a half compared to 3 (but there are other different challenges now. But it's easier to communicate with him now if that makes sense) x

Blimey sorry about the triple-posting mumbles darned phone

Thought I should also say, on a positive note, he has been invited to a fair few parties since at school, and even had a few play dates with some other lovely children / mums. Which has been far better than at preschool!
He's also a lovely, funny great little man once you get to know him, he does really have a sense of humour she makes me laugh (so very different than at 3 years old).

I have a 2 (nearly 3) DD and having her really made me appreciate how much I adapted life for DS.

Life def easier nowadays than 2 years ago I think.

If anyone who has read this is in a similar situation and happens to live in Kent then please get in contact - would love to arrange a meet up

Hi @tigerpug have you any updates on your son? Experiencing something similar! Thanks