First paediatrician appt for possible ASD

[NeverendingPotato]

Hi, I posted some months back under the name SwayingBranches about my 2 year old and his high score m-chat and worries and then got a referral to the community paediatrician. Then I deregistered because I was sick of thinking about it all and had to come to terms with the fact whatever it was his development isn't as it should be, which has only been more confirmed as the months pass.

Anyway, tomorrow is the first appointment with the community paediatrician. What do I expect? Just going over all the stuff and they decide if there's a need to go on? Will we be told it's most likely autism or something else or do they say nothing until other things have happened?

I've been stressing massively about it, but now I can't wait to just talk about him, let everything out.

Yes. It is a screening test usually to decide whether he should be screened for anything and if so what?

Make sure you are clear about what you are subsequently referred to and why and if possible get their department/number so you can chase the referral down the line if you need to as well as read up on the possible issues.

Thank you, that's really helpful.

I took DS to see the community paediatrician a few weeks ago for the same reason.
The doctor asked a lot of questions and wrote everything in the notes. I received the report a few days ago and she's mentioned everything, even things I didn't really think she was listening to or noticing.
DS has been referred to SALT and for multi-disciplinary assessment at the local Children's Development Centre.
I have a follow-up appointment in 6 months, by which time we should have been to the CDC and have an answer.
The doctor said at the end of the appointment that she couldn't say one way or another whether DS has ASD. There are indicators of it, but also things that do not necessarily tie in with it. She wouldn't rule it out though. She mentioned genetic testing as DS has particular facial features that are not inherited.

We left the appointment happy with the outcome. No "wait and see" approach, just referrals with the possibility of genetic testing if ASD is ruled out. For me it was a relief to have somebody take my concerns seriously and act on them.

So at least they give you a clue. He's pretty stereotypically autistic in a lot of ways, but there is an exception or two.

Thanks, I've made notes. Think I've remembered it all!

I wrote a few pages of history and information about DD and gave them to the paed to help her type up her notes. They usually won't commit at this stage - next step was another paed appointment after a few months to see progress. At the 2nd appointment she put us on the waiting list for a Complex Communication Team assessment as the waiting list was 4 months at least. Her assessment morning was almost a year after I had first reported concerns to a HV.
Hope that helps.

Hello similar story here, DS saw community paed at 2 and 9 months, actually referred by his SLT as he seemed to have delayed motor skills as well as significant speech delay. Paed was v nice and asked loads of questions about all sorts of stuff and got DS to do a few things with toys and props she had there. Our concerns about his tantrums and "OCD" behaviour came out in the conversation (noting that at that point ASD wasn't on our radar at all, we were thinking maybe dyspraxia)

All v thorough and at the end she gently told me she wanted to refer him to "stars" clinic (no idea what stars stands for!) for a multi disciplinary assessment for autism and other such conditions. She said she couldn't diagnose but what she had seen, including limited eye contact, warranted further investigation.

We then had to wait 4 months for the appointment with the consultant paed and the rest of the team and ASD (and also verbal dyspraxia) were duly diagnosed at age 3 and a bit.

Guess I don't have any specific advice other than be honest! Agree the notes will be useful so you can make sure you have covered all the areas you think might be relevant.

Also if you are referred on, find out when they will do the referral, the paed I saw took 7 weeks just to write the referral letter, I wish I had chased sooner! Maybe if you haven't got your appt letter after say 3 or 4 weeks start chasing.

Good luck, hope you can make some progress tomorrow.

7 weeks to write a referral letter?? Gosh. I guess even the seemingly simple things aren't quick or easy.

I am also concerned about verbal dyspraxia, now he's attempting more speech there seems to be something quite wrong. But then it could be hearing. His hearing test isn't until June, and he was referred in December.

And the day is starting so well with ds2 randomly screeching, covering his ears & crying when he sees his breakfast & reverting to crawling about. At least I don't have worries about wasting the doc's time.

Turned out he wanted porridge & not toast. It would be nice if he could answer yes/no questions or choose!

May be a bit stressed!

In case anyone is lurking and is curious I'll update, I know I've found other people's experiences very interesting and useful.

So, he most likely has autism, but the paediatrician wants to do genetic testing as well just in case. I've been referred to SALT, 0-5 services as he's not in nursery (goes to childminder a couple of mornings), to the early bird scheme for parents of children with autism, and to portage. And she'll see him again in 3-4 months to see his development.

So there we are. She was a very nice, her own child underwent regression and it turned out to be a genetic problem so it makes me wonder if that informs her actions or it's standard. It was very reassuring though, I felt like a bad parent for not noticing the regression at the time and only afterwards and she went through the same thing, all the oh it's temporary, it's because of x,y or z etc.

I feel sort of flat about it though, don't know why.

Hey never ending, thanks for update. For me it was always mixed feelings following such appointments, relief there are "proper problems" and you're not just imagining it or being a bad parent, coupled with desperate concern for your child.

But there's no escaping the situation and getting the recognition of what's going on is invaluable for getting support and more info on what to do to most help your child.

If he does have VD, note that can also show regression type characteristics with speech. DS will be able to say something for a bit then if we don't keep practicing, he can lose the ability to do it.

Good luck with things, sounds like the early bird thing will be useful.

I remember your posts as swayingbranches. It is nice to see how others are getting on. My DS who is 30 months is going through the process for diagnosis also. We had our appointment last month and were also told he is most likely somewhere on the spectrum but she couldn't say for sure and has referred him for a multi disciplinary assessment which will give us an actual diagnosis hopefully. He is also going to have genetics testing for Fragile x and some other standard tests. She said that it is quite a new thing now to offer the genetics testing as they never used too. (5 week wait for fragile x results and 5 months for all the other genetics testing!) He had his first speech and language appointment today( we had waited 4 months) It was the first time I took DS on the bus without his buggy so he was very pleased with himself and sat pointing at everything and making his excited noises. On the other hand it was my first time really seeing how different he is- heads turning to look at him and smiles because he is super cute IMO, oh it brought actual tears to my eyes. He too has been referred for audiology and I feel we are in for a long wait too as we have been with most of his appointments. It is a very emotional time and I don't know how I will feel once he gets a diagnosis but part of me hopes that it will bring some relief and we can carry on with our lives, as it does feel like you are in 'limbo'. Best of luck with all your future appointments

He gains and loses words in his speech, repetition often makes words deteriorate. He has unusual pronunciation, some words he just makes in his throat. Some words he does do seem hard won, it seems more than just delayed. In fact initially we considered hearing or verbal dyspraxia but more autistic behaviours came to light and it all says delay, but it seems more than delayed. But then I don't know, just guesswork till he's seen.

It's starting to feel more real & I've felt more relaxed with him. He's a sweet, loving, hilarious, giddy little boy and lots of fun! Think I'll enjoy that after these months of waiting and worrying.

That post was to Ahh. Just seen yours thankgoodness

Thankgoodness That's about my ds's age too, he was born Oct 2011.

Our hearing appointment isn't until June, & he was referred in December! The doctor was appalled. Good to know about the genetics thing. My ds loves it on a bus too though I still can't go buggy free as though he's physically capable of good long walks he will just meltdown & refuse to walk. He only ever keeps going when ds1 who is 10 is around, he'll follow him miles anywhere!

It's all so much waiting.

neverending my ds is also October 2011, I contacted audiology to if they could give me a rough idea of when his appointment would be only to be told they never received the referral letter . How did I get a copy of it and audiology didn't? You really have to keep on top of everything, that's a whole month wasted....I managed to go buggy free as we had a very short walk to the bus stop and a short walk once we got off. I was sure I would be able to carry all 20kg's of him that short distance if he decided to throw himself on the ground

I find it strange it's even done by letter these days! Surely an email would ensure arrival, especially with something on it that shows someone has read it. But I suppose there's issues of data privacy maybe. I don't know. From reading on here I expect to have to chase things up, just one more frustration on top of everything.

Ah, short walks! I'm not sure I could even get ds to the bus stop as there's a fork and left goes to ds1's school and right to the bus stop and obviously going a different way isn't something he handles well! I was pleased when he got to the stage where he could step off the drive without actually being in the pushchair! Then there was the one time he wanted in it at a specific lamp post and it took months to break him of getting in at that lamp post!