Social Communication Disorder - sorry long post

[mumsuz]

Would be interested to hear from others whose DCs have been given this diagnosis (especially DDs).

My dd is 4.8 and yesterday we had a stage 2 assessment which included the ADOS. Overall, she scored 6 which would have been high enough to give her a diagnosis of ASD but she only scored one in a section where they needed to mark her twice. So she was given a diagnosis of SCD. She will stay in the system but will probably be re-referred in a couple of years when they think things will be clearer. Does that really mean that it is just too early to diagnose her with ASD but that is probably where we are going?

She has seen so many different professionals (SALTs, Ed Pys) all of whom say she is complex/tricky because she doesnt fall into any one box but probably not on the spectrum. Initally we were concerned about her language delay although Haringey have dismissed her twice as having "mild delay likely to resolve itself".

She has great eye contact, is very affectionate, loves role play and in a seemingly appropriate way. She is also very shy, passive, compliant and very sweet. But she still struggles with her speech, finds it tough to interact with peers (especially if not on a one to one basis). Although she gets very excited about playdates/parties etc - she is just not great at executing them! She also flaps her hands and rocks a bit when excited and has some sensory issues.

She is a very easy little girl in a lot of ways but I have always thought there was something different. Friends and family think she is just sweet, kind, pleasant, shy etc and that she will be fine as time goes on.

I have read a lot about girls on the spectrum and how they present differently from boys and so I think she probably is on spectrum - although my husband is upset because a diagnosis or near diagnosis was far from his mind when we went to the child development centre.

I have a couple of questions. Is there any chance that she could be statemented with a SCD diagnosis? At the assessment, they seemed to think that was unlikely but in the same breath said that she would probably struggle in reception. I am seeing the school SENCO in the first week of the September term but am already worrying about how she will cope.

Also, can the speech/social skills she is lacking be taught? I am feeling pretty low at the moment and have not yet sprung into "action" mode but there must be things I can do as a mum to help my DD.

Any thoughts/suggestions welcome and sorry for the length of the post.

Not got this diagnosis but have a similarly 'complex' or 'tricky' dd2 (aged 8yo). She had her ADOS a week ago and scored below the threshold for a diagnosis. Even though she has significant impairments in all ASD areas they are 'not severe enough' for a diagnosis. Because she does have 'restricted/repetitive behaviours' (RRBs) she also misses out on a diagnosis of SCD.

Aged 4 my dd2's eye contact was very impaired and her ability to socialise was poor, even though she was (and is) socially motivated. At this time her spoken language was 'severely delayed and disordered'.

dd2 still has problems with semantics (meanings, non literal, inferred) and pragmatics (context, conversational skills, non verbal communication) like many kids on the spectrum. SCD describes these difficulties (minus the RRB's that would make ASD).

It seems the spectrum complex is pretty tricky, quite where it starts is a tricky issue. Especially with girls who can present in a much more subtle way (see other thread on ASD in girls). So I guess my daughter is dipping a toe on the spectrum and that's it. From where I am if your toe is on it then that's enough. But then that's coming from a Mum trying to secure a diagnosis to help dd2 through all her schooling, transition to secondary school etc.

I am hoping for a resolution to this long (4 year) journey soon, hopefully at our NHS assessment we will be given a diagnosis. Not holding my breath though. Hope you get this sorted soon, at least some of your daughter's difficulties have been officially recognized...... SCD is a new formal diagnosis, good luck with it all, including explaining to everyone (school etc) what it means! x

Thanks Handywoman.

They did say at our CDC discussion that the other tricky area for them was where there were ticks in many of the boxes but at a less severe level - which seems to be the case for your DD. For my DD, she had some definite traits but then some markers that went against an ASD diagnosis.

How did your DD's speech and eye contact change? Did it just develop naturally - or did you have to do lots of work with her?

I find the whole process so disheartening. Over the past two years we have been dismissed by the local speech and language department on two separate occasions and the SALT nursery report that fed into the CDC assessment said that DD's speech was developing well, if a little delayed expressively. However, she then seems to have been given lots of negative points in the ADOS based on her speech issues.

It is all very confusing. As you say, next step is to try to explain it all to the school. (And probably wait/worry for the next couple of years too).

We did weekly SALT which was intense (privately, NHS SALT woefully inadequate) and worked on all language skills including eye contact and listening skills. Private SALT was transformative.

What sort of speech issues came up for your dd in this assessment?

Yes the communication skills she is lacking now can be taught! My lad and his older half brother are living proof of that! With that diagnosis she'll need to be taught some social skills explicitly that other children pick up naturally - however this can be done.

DS started with a SCD diagnosis that got upgraded as more issues became apparent. However he can and does make friends etc with the right support. SCD is a developmental delay, not an outright halt & it so important to remember that (often prof's will forget if you let em!).

Mythbusting & a few tips.

1. You can get a statement without any diagnosis at all (again DS is living proof of this fact). The law says it is based on NEED, not diagnosis.

1. The IPSEA website shows you how to put in an application for a statement yourself. You are better off doing this than waiting for school to do it as you have more rights to appeal than they do if the application fails. It also puts people like the Ed Pysch on a legal timeline to crack on with their assessments etc, otherwise the "wait and see" approach is likely to fail your child.

1. Parental application for a statement also tells the world that as parents you are deadly serious about wanting your child to get an adequate education. I feel this is an important message to broadcast from the start.

1. The state will provide ALL the services your child needs. (lots of hollow laughter as this is so not true!) Apply now for DLA to help offset the cost of this private therapy provision. I wish I'd realised this sooner!

1. The most effective therapies are practiced consistently across as many environments as you can. Home and school should be working together to help your child achieve any communication targets as for many children generalisation is a real problem. The school playground is a really valuable learning opportunity if school are on board.

1. Start by going through the diagnostic report with a fine tooth comb and select an area of focus (e.g receptive language skills are my son's key weakness, his expressive language is OK). tackle one thing at a time and remember by the time she is aged 30 no one will care if your child learned to follow complex instructions at four or fourteen so long as they can iyswim.

1. Celebrate her strengths and successes just as you would any other child and keep a close eye on her self esteem. My DS was aware he found some things harder than his friends did far younger than any of his teachers realised.

1. Moondog on this forum has given out some really valuable advice on this forum over the years - well worth doing a search through the archives on her name. (she's both a parent and amazing SALT).

Thanks so much, both.

I will check out the IPSEA website. I seem to be surrounded by people saying she wont get a statement or any extra help but basically telling me the likelihood is that she will get a full ASD diagnosis at some point.

You hear so much about early intervention and then others dont seem to want to do it!

Receptive language is a relative strength for my DD. But she really struggles with reciprocal conversation and sequencing/telling a story. At the ADOS, she said "I dont know" an awful lot which she tends to do when she is anxious anyway. Her language is also pretty immature with lots of grammatical errors/wrong tenses etc.

I think already DD knows that she struggles which is why sometimes she shuts down and says she doesnt want to carry on with things. I feel guilty that I am partly to blame because I sometimes used to get frustrated with her for zoning out/appearing not to listen etc. I definitely need to keep bolstering her self esteem.

Have had a couple of days of feeling down (and dealing with DH's shock at the diagnosis) but that clearly doesnt help DD. So, onwards and upwards and thanks for all the postive advice!

www.amazon.co.uk/The-Creativity-Hub-Rorys-Story/dp/B003NFJMBM/ref=sr_1_1?ie=UTF8&qid=1374823366&sr=8-1&keywords=rorys+story+cubes

This is a lovely little tool and can be used on playdates/train trips etc. Just go slowly, it's fine if you start with just one or two cubes and build up. You'll cover turn taking, imagination, story telling and all sorts without even realising you are doing it, and having a bit of fun too if you are gentle and realistic in your expectations of her this summer.