Help! Any thoughts welcome on diagnosis

[beccaboo]

Hi all

We are drowning in a sea of information, having just received a preliminary diagnosis of 'Social Communication Disorder' for ds age 31 months. Paed (consulted privately, so only one session - awaiting NHS appt) noted he is at 'more able' end of spectrum. Having done loads of reading I think he seems to fit a description of Semantic Pragmatic Disorder more closely than anything else I've seen, but confused as to whether this is actually considered on the spectrum or not, or whether it even exists as a diagnosis any more. I'd really appreciate your point of view or any similar experiences - I've been reading old threads and you seem to know a great deal - it's been far more informative than the medics we've seen so far!

Initial cause for concern was delayed speech. Very few words at 2, but vocab has exploded to over 200 words in last six months. Was very echolalic, particularly phrases/songs from CBeebies (bless the Bobinogs and Big Cook Little Cook, but I won't be sorry if I never hear of them again), although this is slightly less apparent now.

Have put him on gf/cf diet in last month and have seen some quite heartening changes. He has suddenly started doing some pretend play! Loves the Happy Land sets from ELC, pushes the cars and people round the track, the characters have little conversations with each other (in different voices!). His speech has progressed from single words to starting to put together a few multi-word phrases - eg. today we had "me like chocolate cake" and "blue car up the hill". Eye contact has improved greatly, to the point where I played a winking game with him today.

His concentration is only good for self-selected activities. He has very minor sensory issues which you'd only pick up if you were really looking for them - a little bit of jumping, once or twice he's flapped something in front of his eyes. I've never seen him spin a wheel or line things up. He used to wander off all the time in the park etc without looking back, but has now become more clingy and even obeys "wait" - a major break-through!

Can appear to be deaf when he's absorbed in something, but receptive language is generally OK when he's listening - understands most simple commands. He's quite social in some ways - likes all his relations, talks about them sometimes when they're not here, greets them at the door and can recognise them all (and himself) in photos.

I just don't know what to think. I feel fairly sure he's on the spectrum somewhere - and it helps to know there's an explanation for things I've found difficult to understand about him - but still trying to get a feel for where/how things might develop.

All comments gratefully received! Thanks.

Somne people put SPD on the spectrum some just off. TBH as long as your child receives help appropriate for them then I don't think it matters. If SPD didn't provide access to enough services then maybe autism would be a better dx, but on the other hand some language units won't take children with an autism dx, but will take children with SPD......

Obeying wait is great!

As for how things mught develop then really you need a crystal ball. DS1 has done nowhere near as well as would have been predicted but I know other children who have steamed ahead. Best thing is just to respondto his needs as appropriate for that time.

Sorry short message but ds1 is screaming postman pat in my ear so must go.

Hi beccaboo

My dd (who will be 5 in August) has a dx of speech and language disorder (like you I think it's probably SPD). She attends our local mainstream school that has an attached language unit. Dd has made so much progress since being there and we had her Annnual Review on Tuesday.
My dd is not on the autistic spectrum and although has minor traits they are certainly not enough to warrant a dx of asd! We have seen many professionals with dd such as Portage, Development paed, pyschologist, Ed pysch and obvioulsy all of the language unit staff and they have all agreed on the langauge disorder dx and as it has opened many doors for us that's all that matters really. We managed to get a statement with that and that's the most important thing!
I often go on a really good site for Spd parents. it is brilliant, full of lots of useful information and the people that post are lovely. Here it is:-
spdparents
If you have any other questions I will be only too pleased to help.
BlossomHill

Thanks so much both of you for your replies. Yes, Postman Pat is a hit in our house too...

Blossomhill, can I ask you - when you say your daughter has minor traits that don't warrant an ASD dx, what sort of things do you mean? This is what's confusing me I think.

We only saw the paed for an hour, and she said it was either a speech & language disorder or ASD, but on observing his playskills she tended towards the latter - he was playing quite contentedly with a car, but was just putting a teddy in and out of it, no storyline. But then he is only 2 and a half, I'm not sure what sort of play we should expect at that age.

Great to hear you're getting on so well at the language unit, sounds good - we've been thinking about ABA but seems a bit overwhelming at the moment and possibly not appropriate for his needs. Did you try anything similar?

Cheers
Beccaboo

If you want more info or to hear experience of ABA please ask me, RexandBen and Jimjams. Don't be put off by all the misinformation out there about ABA, plus there are very few children that its "inappropriate" for. If they are less severe, verbal etc they simply start higher up the curriculum and get through things quicker, hopefully finishing ABA all together. Have you looked at www.peach.org.uk ?

I thought about doing ABA with ds1 when he was 2 but thought it was too much (as in trying to crack a nut with a sledgehammer). I was totally and utterly wrong- we should have done it- it would have been the best thing for him. After that I thought about ABA on and off but thought it had to be full time 35-40 hours a week. Wrong again we now do it part time (as much as funds allow) and although I would prefer to be doing more it is helping. It means that I have started to approach problems (like him craping on the floor yesterday) differently as well and it really helps.

I got a good resource from Canada called Help Us Learn which has proved to be really useful.

Hi beccaboo

Well the traits are echoing, fingers in ears when excited/scared and soemtimes looks at things through the corner of her eyes. Things are really looking up with dd, I had a long chat with the SALT yesterday and she was v. positive. I have actually posted about it on another thread. I'll cut and paste it for you to give you an idea of where dd is at:

Things just couldn't be better in my house today. Had a very long chat with the SALT today and I just feel very reassured that finally there is a light at the end of the tunnel.
We were talking about whether or not dd had an asd or spd, the SALT said no. To have these you must have an impairment in the triad to be dx asd. She basically said stop worrying, she definitely hasn't got asd, spend the time you worry on your dd. Focus on the needs that she has and the areas that need working on but put that idea right out of your head. Dd doesn't have a label that fits. She has had problems with language but is gradually catching up with her peers. Yes her conversational skills are not as they should but they are developing. The SALT has also sent home some holiday work to help with this, she is such a lovely person. Apparently dd has made 18months progress in her language skills in a year, I just couldn't speak I was so overwhelmed by it all. She also said that she doubted dd would need to be in the unit once she hits juniors as so much progress has been made. I asked her what level of language disorder she had and she said mild!!!! Two years ago it was classed as moderate to severe!
I am in a bubble today, on cloud nine. Surely this is a dream and I am going to wake up????
Sorry again for rambling but I am so,so happy and had to share it with someone!!!!!

I think that the important years are between 2 and 5. My dd has made excellent progress in that amount of time, especially within the last year. At the same age as your son she didn't play with other children and barely said 2 words.
I would definitely recommend that you go on the spd site that I linked for you as there are lots of people with good advice about this subject on the forum board.
To be honest I don't really know about ABA and haven't been offered it, so sorry I can't help with that. Although there are lots of other people on here that can.
Blossom Hill

beccaboo I have a ds4 of 33 months and so far we have been told (by NHS SALT) he has social communication delay. His language is pretty much "want biscuit" "want cake" etc. He has a lot of words but is struggling to use them correctly.

We are waiting for a portage teacher to assess him. Does your ds receive portage?

Ds4 is quite social especially with family, says hello and bye unprompted to people. He knows all the names of close family. I thought these kind of things would rule out an asd diagnosis. Would be interested to know if anyone has an asd child that does these things unprompted.

ds1 says bye and knows names - even of children he hasn't seen for years....

Jimjams, Does he say it spontaneously and in the right kind of way? Was he saying it when little or is it something you feel you have had to teach. I am amazed as ds3 does not say hello or goodbye he is oblivious unless it suits him not to be.

Ds3 has also taken a long time to know that names are particular to one person and you cannot generalise them.

Does ds1 react to the doorbell? DS3 never has but ds4 knocks people flying to get to the door. Again I would have thought this would make it unlikely for him to be on the spectrum.

DS1 has never said hello. He says bye bye if someone says it to him using his name. Although less so these days- used to say it 100% - now he doesn't always bother. he can't just say bye bye though- has to use thier name as well.

He's good with names. I said to him today that my friend "X" was on the phone. He hasn't seen her in 2 years but he started saying "mmm" "mmm" which is his name for her son- his friend from his antenatal group- again hasn't seen him for 2 years.

Always reacts to the doorbell- although I suspect this is partly to check out who it is as he likes to look at the cars of people he knows (and heaven forbid if someone turns up in a different car- all hell broke loose when the in-laws visited in a hire car 6 months after visiting in their own). He often spots familiar people arriving before they ring the bell- so I'll hear him calling "granny granny" before she's even parked the car.

The door's a bit of a rutual for him. If someone says "oh I must go in a minute" that's it- he will actually try and drag them to the door- then he shoves them out (literally with a push) and slams the door. Luckily we don't have many visitors who don't know him

We have the door thing too. Woe betide any unsuspecting visitor who says "I'll have to go soon" or "It's nearly time for me to go." Ds1 hears the word "go" and off he runs to the door. If the visitor doesn't make it to the door within about 10 seconds ds1 runs back and tells them "Time to go!" If that doesn't work he'll try to pull them to their feet and shove them out of the door. Few people make this mistake more than once or twice.

Thanks Blossomhill, your info was really useful and it's great to hear your dd has made such amazing progress. Have been looking at spd site, thanks, there's some good info on there.

It's interesting what you say about the triad. I'm wondering where the boundaries are with stuff like imaginative play. My ds spent an hour today with his ELC 'Happy Land' house - the characters have conversations, hug & kiss, answer the door, go to bed, have a bath and go to the loo. The fact that he won't oblige in a clinical setting may or may not be significant, I just don't know. Can you remember if your dd had pretend/imaginative play a couple of years ago?

Maddiemo, my son also knows names of all family and can point them out in photos - and will greet them at the door etc. Having said that, he also know the names of all the CBeebies presenters, and talks about them regularly too! He does get excited if he hears the bell and runs to the door, but I think we've probably taught him that. He will also sometimes spontaneously pretend to have a conversation on the phone. Regarding portage, we aren't really in the NHS system at the moment(we're seeing them for the first time on Monday) so we don't have access to anything like that yet. I'm not even sure what portage is?

Thanks Jimjams, you really hit the spot there - in fact the hammer/nut phrase was exactly what I was going to say in original post. I was also worrying about 40 hours a week for a child of two and a half, but if part-time is possible then it's a definite maybe. Do you get help with the cost?

By the way, have been reading other threads and I love the idea of the 'mother from hell'. I'm definitely shaping up to become a member of that club.