1st Paed appointment yesterday has left me confused

[osospecial]

After waiting since last Sep my DD2.5 had her first paed appointment yest. I am left feeling a little confused though and was wondering about other's experiences in their first appointment.
Firstly i was told when she was referred by HV that it was for a Ruth Griffiths assesment but after looking into this I dont think DD had that yesterday. I thought she would spend a lot of time playing with DD while carrying out specific 'tests' (can you build a tower, can you feed the doll etc)
The appointment was only 45min in full and the paed spent about 40min asking us questions and only about 5 min with DD (although i know she was probably still observing her).

Basically she said that she doesnt think DD has autism because there would have been more regression (DD did go from saying around 4 words to none but had glue ear the following month which could have been the cause for that) which, dont get me wrong, i know that sounds like good news but she went on to say she is however concerned about the lack of eye contact, lack of interest in peers and SAL delay. Also that asd can be hereditory and SIL DS14 has autism. she is not sure however that her lack of interest is not down to her poor communication skills and so she doesnt bother with people because she cant communicate.
She also said she wouldnt do any kind of intelligence test as DD doesnt understand a lot (i think she meant the RG type things?) and so she wouldnt be able to do it.
She did say she wants to see her again in 6 months to see how Speech & understanding is getting on (still waiting for SALT to actually start on nhs)
She said she is still only young basically and the other issues might just be because of the communication problems.
The good thing was aswell that she said if she sees her again in Sep when DD turns 3 she can see how she is progressing before shes due to start school after xmas and if she is going to need any help in school.
She also referred us to sure start.
Im not sure what to think now, i know i just need to concentrate on helping DD with her speech, understanding & communication for now but when i try and feel relived that its kind of good news (like everybody else seems to think) im finding it hard to believe DD will 'catch up' with others her age and these other concerns will then dissapear. Am i being paranoid? What was your experiences with 1st Paed appointment please?

I think that's fairly usual where we live. Quite rightly, they don't want to be diagnosing anything too early, as there are so many contributory factors to a child's development. Now she is 'in the system' which is a good thing. If she were clearly very autistic then she would have been referred for further assessment for that, but that isn't the case, so a 'keep a watchful eye and see what develops' approach is a good thing. She will still only be 3 at your next appointment. POssibly by then you will have seen a SaLt and will have a clearer picture of her sp,lang, & comm.
At our CDC, the Paediatrician will always see the family first, and spend 45 mins finding out from parents what they perceive the issues to be, and then make the decision to refer elsewhere, or to reappoint or (rarely) to say they don't need to see them again.

Thanks backforgood I think you are right about not diagnosing too early. Im a bit confused that she said she didnt think it was where autism but then said the rest of concerns re eye contact etc. Im not sure if i should still be worried about asd or not. I guess its just time that will answer my questions about what the future holds for DD (unless i find a crystal ball!)
I am glad we will hopefully have had 6 months of salt by the next appointment and we can see if any/enough progress is being made.
Like you said its good she is 'in the system' and they are going to be monitoring her progress.

oh oso, our first paed appointment was also a total anticlimax (DD was approaching 3 back then) and went similar to yours... we mainly talked to paed; no tests done etc. paed kept telling us during the appointment (and also in 2 subsequent appointments) that she did not think that DD was autistic but very concerned about her s&l delay/disorder (and various other things). it felt like we were getting nowhere. we just had a review every 4-5 months.

luckily, our very switched on Salt pushed for the ADOS and DD was diagnosed at 3.10 with classic autism. btw, DD never regressed.

Thanx chocjunkie, it does sound like our first appointments were very similar. from what i have read i didnt think all asd children had regressed so i was a bit confused when she said that was the basis of her opinion that DD had only slightly regressed.
can i ask what your DD s&l level and understanding was like at that point and if the salt did help and did it take ages? we have been told DD will have blocks of SALT now (once a week for blocks of 6 weeks or similar) which should be starting very soon.
also, sorry, but what is ADOS?

ados is a test for asd; link here.

dd's s&l was (and still is) way behind. at the time of her 3rd birthday she only had single words. understanding also very delayed. she is now 4 and can combine a bit, but uses mainly learned phrases. understanding still very much brhind. we have salt every 2-3 weeks. progress is painfully slow. not sure how much progress is due to salt really

hth

Thanx chocjunkie

I know what u mean about slow progress, I havnt seen much progress at all in dd in last 6monthsdespite our efforts and its so frustrating.
I am more worried about dd's understanding as it prevents her communicating in other ways like nodding for yes etc, the lack of speech would be easier to deal with then.
I'm getting impatient waiting for salt to start. I have ordered the hanen more than words book for more ideas to help with communication skills.

yes, same here. much more concerned about the lack of understanding :(
DD started only reply to yes/no questions (e.g. do you want an apple?) when she was 2.8. Life got a little bit easier once she had cracked this.

I also used the hanen it takes two talk a lot (very helpful). have not read the other hanen book though.

I used the it takes two to talk+have just traded it in on amazon for £33 which was how much they were selling the more than words one for so got to do a swap which was good. The it takes two was very good but I still found a lot of it didn't work with dd as its so hard to get her interest+attention to do the things they suggest.
I've heard the more than words gives a bit of a different approach and can help with the understanding side. Havnt had it through post yet but will let you know if its any good

"i know i just need to concentrate on helping DD with her speech, understanding & communication for now".
Absolutely, good luck with that. Your views make much more sense to me than the doctor's.

"she is not sure however that her lack of interest is not down to her poor communication skills and so she doesnt bother with people because she cant communicate."

but that's how it is for people with autism too I think. Coupled with the remarks about regression, perhaps this paed is either very anti-diagnosis or she is a "definition of autism should be narrowed" type of doctor? Either way, her remarks seem to say more about her and her/her authority's politics than they do about your dd.

Yes, More than Words doesn't presume the child is already ready and willing to communicate whereas It Takes Two does a little bit.
Have you tried the DVDs called "Teach me to Listen and Obey"? Ignore the bad title, they are among the few materials available focussing on receptive language. www.teachmetotalk.com.

also my old threads on receptive language on this board may interest you. My son is now 6.6 if that gives you an idea of what era to search in. search for threads with "receptive language" under my name, we used to be quite a teach-yourself-speech-therapy crowd round here in the old days.

Oh thanks lingle, I will def look at that dvd+the other threads, I know what you mean about being ready+willing to communicate, the ITTTT book and the SALT parent workshop I went on did have good ideas etc but none are working with dd as she doesn't seem interested in communicating most of the time!
About the paed comment about not showing interest in others cos she can't communicate, I do think the issue is more that she doesn't want to communicate+is happy in 'her own world' not communicating+this is why progress is slow.
Thanks for the advice, I've had so much good advise from this site I don't know what I would do without it tbh

I understand, I owe my sanity to this site.

Even where ITTTT works, most of us found that we needed to "go deeper" as well in at least some respects. In my case I needed to (i) realise that DS2 was a visual thinker and (ii) understand DS2's sensory profile and (iii) identify where his pattern-recognition skills were swamping his general perceptions and change his stimuli - so I had to remove music and poems for a while so he could concentrate on the actual sense of words.

If you feel you need to "break in" to dd's world more, and if you are getting enough sleep to read some fairly dense text, consider buying the lovely Stanley Greenspan's "The Child with Special Needs". The "More than Words" book is like a much more user-friendly version of Greenspan's ideas (Hanen excels at clear prose, Greenspan did not but was a guru and much loved). There are also various clips of Greenspan at work on youtube.

If a few months' hard work with "More than Words" with Greenspan backing you up doesn't work, you may feel you need to go beyond these naturalistic techniques and look very seriously at alternatives like ABA. Moondog (I'm sure you'll have come across her) famously described as "faffing around with Hanen" situations where a child's 3rd and 4th years go past using just Hanen techniques when in fact something more intensive is required. What you cannot do is go on the professionals' timetable.

www.mumsnet.com/Talk/special_needs/973999-DS-39-2-year-check-with-HV-big-elephant-in/AllOnOnePage#19952994

I would start with this thread and follow the links to the three other threads mentioned. A lot of hard thinking from some very brainy people (not me, I just benefitted) went into these discussions.

Lingle. I have just read the thread you mentioned. I must say this - You are ALL wonderful!! It brought happy tears to my eyes just reading all your wonderful words of support and advice to that OP. Way to go MNSN!!!

Sorry to hear that your first appointment was a let down. Can I just ask, was the appointment with a community Paed or neurological Paed?

We had our first appointment last October with the neuro Paed where she more or less hinted at a dx of ASD, but did not confirm it as he was too young. It was a bit of a shock and a let down at the same time. Shock at the dx, but a let down at the delay in getting help for him. She refereed ds to SALT, Portage, Special nursery place. The support was offered but it was the delay which annoyed me.
The appointment lasted about an hour and mostly it was about previous history and milestones etc. we chased a dx and got one in January but it was pointless really, what you really need is help put in place for your dd. Make sure that you have copies of all referall letters within a fortnight of the referral being made and start chasing the departments for appointments. It is better to a PITA parent than a passive one as it gets you help quicker.

Get the paed email address and email her with any concerns straight away rather than waiting for the appointment. If you really want an appointment quicker, mention regression and ask for an appointment, that should get her attention. We have been told by our Paed to contact her straight away if there is a sign of regression.

With regards to progress, it has been slow for us in the last months. We are doing a verbal behaviour program and supplements and exercises. The verbal behaviour has helped reduce his anxieties as the program is centred around the child and is very play based. The supplements has helped his concentration massively, improved eye contact etc. We were using More than Hanen, the VB program is not very dissimilar to Hanen, but the difference is between intensity. It is very tiring, Simply put, the more you do, the better the results, but the results are worth it.

ohso I could have written your post a year ago! DS is now 3.5, with very intense speech therapy (Private) we are now saying sentences. However, DS communicates very much on his terms. And he almost certainly has auditory processing issues. We also have glue ear, grommets, endless ear infections that could affecting things.

DS is at a preschool nursery and in the last couple of weeks has been seen saying something to another child, and has twice held hands with another child. So he may slowly be getting interested in his peers.

Our Paed has just said 'traits of autism' so far and is doing the watching and waiting.

Are you anywhere near London? We have mountains of resources we've brought over the years and I'd be happy to show you what SLTs have taught us to do at home which has worked great. PM me if you want.

Thanks for the link lingle, I have started reading the first one+they are very interesting.
Dev9aug I don't know if she was a community or neuro paed actually, I'm not sure wot the diff is tbh and on letter it just said paed. I have also started using supplements with interesting results so this is something I will keep up.
Cjn27b thanks for your response also, I saw a private salt before xmas as a one off to get new ideas etc+she was very good and has offered to sessions between the block therapy provided by the nhs. This is great but waiting for nhs one so I can arrange the private one around it if needed! Finally got appointment a week tue tho so it moving (just slowly).
Sorry I don't live near London I am in Wales but thanks for the kind offer