Just got an ASD diagnosis (sort of)

[oodlesofdoodles]

DS1 (4) has just been half diagnosed: either Aspergers or something called Pragmatic Language Disorder. DH and I reckon he?s probably the PLD thing as he doesn?t have sensory issues and he?s not obsessed with order/routine.

I?ve suspected something is wrong for quite some time. I went to the health visitor last August and it?s taken until now (April) to get just a half diagnosis.

I think that he would like to be social with other children, but doesn?t know how. He?s completely wrapped up in himself and his own world. Only friendly adults can be bothered with his one sided conversations.

He was very ill as a baby and I?m sure his five months in intensive care left a big gap in his development. Now I think that if he?d been properly assessed at age two by a SaLT they could have picked up his problems then and we could have got on with treatment/therapy earlier. But I kept thinking that he would catch up, or that things would improve when he started nursery or just a few more playdates. If only I?d asked for a referral earlier or made more of a fuss.

As he?s my oldest I didn?t know what was normal development.

Has anybody heard of this Pragmatic Language Disorder thing? Does anybody know what the prognosis is? My DH says he?s going to improve, but I fear the opposite. What are the long term life chances of people with Aspergers/PLD? Will he need to live with us as an adult, or live a lonely bedsit life? Are there any therapies that work?

I can?t face my friends at the moment. I know cutting us off doesn?t help him and is unfair on his sister. Should I be telling everyone he?s on the AS? Will they laugh at him?

Aspergers means possible fantastic life prospects. Just harder socially sometimes, that's what my aunt told me. Haven't heard of the language one but please don't give up hope!

If someone laughs at him tell them where to go! Think of him as differently abled not disabled.

He's lucky to have such a supportive mummy

Also DPs brother has ASD. He lives miles away from his mum, has a job and a flat and some friends. He doesn't have a girlfriend but it doesn't really interest him. Other things make him happy.

IMHO he's very young for either dx, just take your time, deal with things as they arrive and try not to get too worried There's no need to go sharing / broadcasting the dx if you don't want to. We only told grandparents and school, everyone else just knows him as ds1 so why change anything? As you haven't got a definite line (and the two things are quite different really) then no need to rush into anything - what I'm saying is don't feel pressured, only do what you want to and what you think is best for your boy :)

p.s. my sarcastic little was implying that telling a mum not to worry is like telling an ant not to crawl... tis what we do and one day maybe I'll even take my own advice

Haha mrs shrek i know what you mean about taking your own advice. I rarely practice what I preach!

Sorry you have this uncertainty, either DX is upsetting. We're always happy to hold hands and supply chocolate.

IMO you will find that you are comfortable telling some people, and not comfortable telling others. But where you draw the line is different for each person. Personally, I told all my close friends and my family, and most of DH's family as it was obvious there was something and I'd been confiding my worries with them. They were pretty much really supportive.

You will find out for yourself where your line is, but don't feel you have to tell people. It takes time to come to terms with a DX and you still don't know exactly what to tell people. Hopefully your friends and family will be supportive.

I've heard more about pragmatic semantic disorder (PSD) link here , but that sounds subtly different to PLD. PSD is probably on the autism spectrum (ASD), a lot of the difficulties look very similar to ASD. Not sure what the differences are to PLD. Someone on here will know. It could just be the latest name for PSD. HTH

I have a seven year old boy who was only ever diagnosed as language delay with sublte social communication difficulties, but the closest dx imo would be some sort of pragmatic language disorder. I found that as my boy's language improved (he didn't speak in sentences until past 4) his concentration and social skills improved, as you describe it's a case of wanting to be sociable but not knowing what to say

IME it's very hard to get taken seriously before 3 with language problems (as up to age 3 there's a chance children will just be late talkers, i.e. all of a sudden develop age appropriate speech without any intervention). I first asked for a referral when DS was 2.3, and fobbed off until he was 3. So it is quite possible that even if you had gone to HV/GP earlier you would have not got sorted any quicker.

In terms of prognosis, I know adults with Aspergers with jobs, partners, families etc.

Re:telling people - you can take a middle road as well - say your DS has language problems, is under salt etc, without saying about the exact diagnosis. As others say, it's up to you who you disclose to, like any other medical information.

Thanks people. The PSD link is helpful and describes a lot of DS.
I start sobbing whenever I talk/think about it so I've just been avoiding people (other than my patient DH).

Sorry, another question. Another poster has mentioned ABA. Is this something we should be doing?

imho research ABA, TEACCH, PECS and all the other stuff - some for behaviour and some for structuring to help him know what is happening and support communication. An ecclectic mix seems to work for many of our dc rather than taking on a whole 'package' of one particular thing iyswim

from a language/social skills POV - you might want a look at Hanen's Talkability book, and in terms of ABA, VB is the language focussed component (google mariposa school, they actually have a whole VB manual online). Don't feel pushed into starting anything now, take time to read around. Btw I never did ABA, as I didn't realise you could do it parttime, thought it had to be full on full time programme, I just did Hanen type stuff to work on my DS's language, with use of visuals to get his language up to sentence level.

If it helps, oodles, I'm in the middle of the autism spectrum (high IQ but very hgh scores for autism traits). I'm married with a teenage son and a job I love and have learned to make many lovely friends. I know a very large number of people on the autism spectrum who have managed some of all of this. Not everyone, no. But many. It's not a disaster, but a brain difference that needs respecting and understanding, plus we need to be taught social skills as an absolute must.
If it turns out to be an autism spectrum condition or anything else, there are many many lovely people on this site to walk with you on the journey.

oodlesofdoodles

PubMed is the largest online research paper library some 6 million research paper or more, and you can create your own online PubMed research paper collections, of researcher papers which are of interest to you.
My main area of interest is Auditory Processing Disorder (APD) which is a recently recognised listening disability which is one of the underlying causes of dyslexia, and and one of the multiply issues which can become part of the multiple issues which can cause many issues on the autistic spectrum of issues.

I have a "Pragmatic Language Impairment" collection of research papers listed on my Invisible Disability research paper web page, and there are also "Autism", "Autism and Regression", "Hyperlexia", "Specific Langauge Impairment (SLI)", Speech Sound Disorder", and many more related research paper collections, which may help provide some insight.