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Social Communication Disorder - Not classed as ASD so where to go for support?

(21 Posts)
justgettingby Sat 01-Mar-14 23:50:13

Hello, I’m new to Mumsnet and just looking for support /advice from people who may be in similar situation to us. DS 6.5, has recently been diagnosed with Social Communication Disorder. We were told he has significant social impairments, but his obsessive / repetitive traits are limited enough to exclude him from an Asperger’s diagnosis, as per the recent reclassifications (he would have had an Asperger’s diagnosis if he had been assessed a year ago.)

In spite of our expectations, his school have been fantastically supportive and have put in place an IEP and regular meetings with us for review, gained approval for an Autistic Advisory Teacher to visit and make recommendations. His behaviour in school and at home has improved no end as a result.

What I have found most difficult is that socially, starting before his diagnosis, we have become quite isolated. I did build friendships with a few mums of children he played with when he started in Reception, but over time I have found people making more and more excuses and our social plans reducing. Unfortunately he has got a reputation for being “naughty” and although his behaviour has significantly improved it is hard to shake the label. Plus I don’t have very thick skin and nor do I have terribly strong social skills myself, so I feel I am letting my son down somewhat by not building better friendships with the parents.

I have been trying to find a friendly support group, but I can’t find one that covers Social Communication Disorders. Would it be appropriate to go along to a group which focusses on ASD? I worry our issues would seem trivial in comparison, though many are similar.
Is there anyone else who has received an SCD diagnosis and where do you go for support? If your child has behavioural issues, how do you cope with the judgement of others? I just find it incredibly overwhelming.
Thanks.

salondon Sun 02-Mar-14 07:10:32

Hi there

I don't know what the difference between the two is. I am sure there must be some.

However, what of you treated it like an ASD diagnosis and chose intervention accordingly? You could do play dates as if it's an aspergers child and intervene accordingly. I shouldn't really be advising you on this. I have very different child. But I am assuming that the principles are the same.

I'll let other mums with High functioning kids respond. Meanwhile, does he have a statement?

Hang in there.

eatyourveg Sun 02-Mar-14 08:14:04

Lots of asd mums also get support from Afaisic I know I have over the years. Almost al the mums I have met there have children with asd

OneInEight Sun 02-Mar-14 08:17:40

I am not the organiser but I think you would be very welcome at the ASD support group I go to as your child seems to share a lot of the issues. I have never heard of a group specifically for SCD.

PolterGoose Sun 02-Mar-14 08:51:33

Message withdrawn at poster's request.

bochead Sun 02-Mar-14 08:52:59

DS got this SCD diagnosis at 7 before ending up with ASD phenotype at 8. I just pushed to get ASD outreach support in his statement as tbh those were the appropriate interventions. SCD is essentially just one aspect of the triad - but it has the same support requirement for that part of the triad, as someone with a full ASD diagnosis. A savvy SALT should also be involved.

You need asd type support, but you'll just have to fight HARD to get it. It's very frustrating because technically it's a less severe diagnosis than ASD, but it doesn't mean the child won't need significant support - I really do advise you to go for a statement as without it, any school support can be whipped away at a moment's notice. (+ if your primary is currently great what happens if the HT changes or when your child hits secondary?)>

youarewinning Sun 02-Mar-14 10:09:48

I'm watching this thread. My DS is on list for assessment for ASD and I've been told he may get an SCD dx instead of AS - again got told AS is not given as a separate dx anymore.

My argument with this is that asd is a spectrum disorder - so there may not be extremely string repetitive/ obsessive behaviours but yet other behaviours may present as 'more severe' than someone with an asd. (Sorry couldn't explain it better!)

What worries me personally is that SCD will be interpreted by others as anti social. My ds is anything but - he just cannot navigate social situations etc.

youarewinning Sun 02-Mar-14 10:14:29

Altho I think my ds obsessive and repetitive behaviours will meet the spectrum requirements.

Even ASC said it's worrying that he seems to think minecraft is real life grin

I think it was actually you polter that suggested to me to make notes and provide evidence of all of ds behaviours that meet the criteria for an AS/HFA dx?

PolterGoose Sun 02-Mar-14 10:26:56

Message withdrawn at poster's request.

twainiac Sun 02-Mar-14 10:59:45

Justgettingby - you seem to be in a very similar situation to us, DS is nearly 8 and has missed an ASD diagnosis due to lack of obsessive/ repetitive behaviour. I am not sure whether to push further for a diagnosis as, to be fair, when I read the diagnostic criteria myself I can see that he doesn't quite fit it.
DS has some support at school - they do at least recognise his difficulties. He has 2 friends who come to ours and he to theirs, and he does play with others at school. I don't think he has a reputation for bring naughty, kids just don't like him :-/
I have attended a local ASD support coffee morning, but for mums rather than children. TBH I felt a bit of a fraud as clearly we don't have the issues some others do, but I was welcomed there and it was nice to be with others who understand and have different criteria for their children's success ( I find some of the competitiveness and bragging in the playground very hard to tolerate!)
So, I guess if you have any local support groups I would approach them and see what they say..... my DS diagnosis says he is not on the autistic spectrum, but we still treat him as though he is.

Good luck x

youarewinning Sun 02-Mar-14 11:13:17

I'm pretty sure it's ICD10 DS will be assessed under (clin psych did say as I asked if they did ados). It was the clinical pychologists we saw at Camhs who said ASD assessment but possible dx of SCD.

I must get the Tony Attwood book - I always hear you rave about it. Thank goodness Ou degree finishes in April and then I'm done. I get the feeling my reading material is going to get very heavy in different ways after that!

I have the ICd 10 criteria saved to homepage of iPad now! DS meets the criteria for the minimal characteristics iyswim? I guess though it depends whether they assess it at level that meets the asd criteria for dx. Meanwhile I'm hanging off the every word of posters like yourself!

youarewinning Sun 02-Mar-14 11:21:35

What qualifies as repetitive and obsessive behaviour?

I'd class my Ds obsessions as the fact he wants to do that one thing all the time, would do it all day and not eat/drink etc and it's what he converses about with people.
However because I carefully manage this we have struck a balance.

Things such as if we eat out somewhere next time we go he wants to sit in same place and eat same food - there would be no major meltdown if we didn't but more he hangs on to repetition as that's his reassurance iyswim? The same as when he came back form 3 days with my mum last year at the campsite he always goes to he cried for hours about what had changed and what would be different next year.

It's the kind of repetition that gives him security iyswim?

I agree dcs with a SCD dx should be given access to asd support because the social communication part has a big effect on how they manage in society - for example within school which is compulsory.

Redoubtable Sun 02-Mar-14 11:24:01

Hi OP

As others have advised, re-visiting the ASD vs SCD diagnosis may be valuable.
Document any/all unusual behaviour from your DS:
including motor skills he has had difficulty mastering (stairs? cutlery? bicycles? writing?)
any sensory 'tics' he might have
sleep, food issues etc

Attila ( I think) on here has a great phrase that "you are your child's best and only advocate", and you know them best; not the professionals.

While you are doing that, Talkability is a marvellous resource/programme for you to help DS work on his social imagination, flexibility and play skills.

I'm a bit of a bore when it comes to Mindfulness for children; 'breathe, think, do' is a great mantra.

PolterGoose Sun 02-Mar-14 11:42:35

Message withdrawn at poster's request.

youarewinning Sun 02-Mar-14 12:42:44

Oh dear. It is not helpful when schools refuse to even try and see it. I was told Ds had SC difficulties when he was in year R - until I asked for support that is and then they said it wasn't a problem. Except we always got back there whenever I complained about him being bullied.

Eg he has SCD - me in know how can we help - school it's not that bad - me he's being bullied - school: he just doesn't understand other children as he has SCD. angry

Get to junior school and first parents evening in October his teacher says "DS is fantastically quirky isn't he" and there lies the difference - she celebrated and adapted to his 'differences' and at least made an effort even if he became more anxious as he got older.

youarewinning Sun 02-Mar-14 12:51:06

polt I've just found his website.

I'm going to link it here as I think others of you her who have children with SCD dx will find it useful and enlightening. I've read one section and could see my Dd immediately - I always wondered if his pedantic ness was ASd or just him being a PITA! (Eg " mum when does X programme start" " about 5 minutes" "well it's 8.54 and to starts at 9 so that's in 6 minutes") at least 20 a few times a day. grin

youarewinning Sun 02-Mar-14 12:51:29

www.tonyattwood.com.au/index.php/about-aspergers/what-is-aspergers

twainiac Sun 02-Mar-14 20:42:00

Thank you for that youare....... Interesting reading.

justgettingby Sun 02-Mar-14 23:09:29

Thanks eatyourveg I will have a look at Afaisic.

Poltergoose, to be fair to the clinicians who assessed him, his report does not state that he would have had a diagnosis of AS a year ago and it is possible I have taken something that was said out of context blush, although I see that youarewinning has also been told the same recently, so perhaps some clinicians are restricting AS diagnosis?! Thank you, however, for the link to IDC 10. It is interesting to read, because although DS's issues are mainly around his social communication, he does have some repetitive behaviours that we just didn't realise were significant at the time of his assessment, and a lot of their assessment was based on what we told them about DS. For example, we didn’t think to mention that he twists his hair around his finger endlessly, he repeatedly clears his throat, or that he blinks too hard and frequently. He has little quirks such as all plugs have to be closed and he will close them if he sees them open. There are lots of little things like this, which didn’t seem significant enough to mention when we were new to this, but as we are now learning more, we realise may have been helpful with his diagnosis. Or perhaps they wouldn't have mattered as none of them prevent him from functioning. What led us to the assessment in the first place were his much more obvious issues, such as his aggressive responses to situations and his distracted/disruptive behaviours at school. Thanks for sharing your’s and your DS personal experience. I have to say I see myself in your comment pre-dx I was horribly embarrassed when ds melted down in public, and his would affect how I dealt with it, feeling I needed to be seen to be parenting in a way that others would approve of and it is something I have to work hard at.

DS doesn’t have a statement and tbh as the school have been so supportive and have had such success, we hadn’t looked into getting a statement, especially as what I read makes it seem such an impossibility. I am concerned about how this support is maintained when he goes to secondary school, but hadn’t even considered the ‘what if’ of the Head Teacher moving on. His school INCO mentioned trying to arrange a SALT visit at our last meeting, so we will hopefully get an update soon. Am I being naive?

Twainiac thanks for sharing, I too am worried about going along to ASD support group and feeling a fraud, but I guess I won’t know unless I go along and find out. Out of interest, did you go back and did you find it was helpful?

WilsonFrickett Mon 03-Mar-14 17:48:47

just my DS has a SCD diagnosis and interestingly enough school have just suggested getting him re-assessed. The logic for this was when he moves into high school he may get more support, eg longer to take exams etc, if he has an ASD dx rather than SCD. I must admit I'm sceptical about this and feels it goes against the 'every child is different' approach - surely the label doesn't matter, the support should be tailored? - but I am going to discuss with the community pead.

Wrt to his dx, he has a classic ASD profile across all the triad, but is simply below the thresholds to qualify for a full ASD dx.

In terms of support, I often identify him as ASD (and often on here too) and will seek support on that basis. We have a 'general' support group in our town, but I've been on a Hanen course and DS has attended an ASD play scheme in the past.

I'm quite thick-skinned about seeking support though. You have to be with high functioning children because a lot of people don't 'see' the issues unless you really spell them out. It was posting on here that taught me to not be 'top trumped' - your son has the right to reach his potential just as much as anyone else.

twainiac Mon 03-Mar-14 22:10:00

Justgettingby - I did find the support group useful, even if only to chat to people who understand that DS is not just a naughty boy. And useful to talk about the school experience too. I shall go again, it's just nice to be able to talk to people in the same boat, people with similar concerns and problems. Similar to on here really!

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