ASD DX?-seeing the Paed on Monday

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Hi, I have posted before about my DS aged 3.6 who had delayed development in some areas, including speech, does not socialise with other children at nursery etc. We are receiving help from SALT, specialist early years service, and have already had one paed appt where they agreed DS had autistic traits but wanted to see us again. Anyhow, our appt is on Monday morning and DH and I were thinking we would get a diagnosis, but we have spoken to 2 different people from Autism outreach (both V helpful) but they said not to expect a dx on Monday, and it is very likely they will say wait and see, as he is young and we think not too severe with his ASD traits.

We have and will take with us a SALT report saying he presents with an atypical pattern of language and communication skills which appear to be part of a more pervasive difficulty with social interaction and imaginative play. We also have daily summaries from nursery which outline all the difficulties they have with getting DS to participate in some areas, although not all. We also have our parental views, and we feel that he probably is ASD.
Other than taking our evidence in, and requesting help for DS, we're not sure if we should be more pushy (Autism oureach say no) and should we ask why they won't give dx?
Is there anything else we should prepare and take with us?

They might DX him on second visit. But they won't rush to DX in case they get it wrong. Good that you are prepared for it and won't be shocked when/if they mention ASD. I suspect they'll want to observe your DS again, either at Nursery or another visit. At his age the traits could point to any number of things that may present very similarly to ASD, or even be something else and ASD. Don't worry, you don't need a DX straight away to get the support put in place. How long ago was his first appointment? It took 6 months for my DS2, he was 3.1 at first appt, paed saw him 3 times more, and 3.7 at DX. But the strategies etc school, SALT and we at home were following were no different during that 6 months than if he had been DX. We just asked them, what could it be other than ASD? If they can't answer that one, then it probably will be ASD.

Dd2 was diagnosed at 3.2 years after 3 appointments (SALT, Pead and Phyc), it took just over 8 months to get a dx but was told to expect a dx of ASD from our first visit to the pead. We were only given a dx of ASD and told to wait until she has completed a year at school before saying where on the spectrum she is. Her sister was diagnosed when she was 4 with Aspergers but we had to wait over a year to get a dx.

Thanks, that's great. I have lots of worries as DS is due to start school in sept and despite support being 'needs led' as Starlight says above I think a DX will help to get support, help with stat assess etc.
Also, although his speech has come on in the past 6 months he has not made much progress in other areas, in fact his behaviour is getting worse at nursery, so I am well aware that the gap between DS and his peers will probably widen. Will push for a dx I think, and def ask the questions above.
Any other points welcomed....

thye're more likely to do some profiling and ADOS, but as the others say, you're well prepared and obviously not likely to be shocked if the dx is ASD. We've just had DS1 (age 10) who hides his ASD well at times diagnosed, 7 months from referral to dx. Which I gather is quick round these parts!!

I would totally echo what Starlight says, I can't see the point of a "wait and see" attitude in an area where early intervention can be so crucial. My DS is just a couple of months older than yours and has a DX of general delayed development. I am not in the UK so the system is a little different, although they use the same diagnostic tests, eg ADOS etc basically we were told that this DX was not classic autism (one of the triad of impairments is not present) but was on the spectrum. Anyway, point is, the DX qualified him and us for a place on an ABA programme. We have been doing it for 3 weeks and already seen progress.

We got a dx today, can't quite believe it, feel like i'm having an out of body experience. We felt we wanted to get the dx, but had been told not to expect it. The paed didn;t do ADOS, just asked us some questions and observed and talked to DS and the confirmed he is on the spectrum somewhere, either HFA or AS, but wouldn't say where. She will see us agin in 6 months and said if there are no further probleams she will not wish to see us agin after this.
She also examined him, and measure his head, and mine and DH's heads and said he had a really big head-nearly 98th centile and would refer him for an MRI scan. She would not give any indication, even when pushed, what she was looking for. We're both really worried about this now. I have come home and checked DS's red book and when he was born his head was between the 75th and 91st centile, so was quite big then. I'm really worried now that she thinks he has another medical problem.
Anyway, we got our dx- so now going to finish my DLA form and get on with our stat assessment. And try nor to worry myself stupid about the MRI scan.
I feel relieved and devastated, that it's been confirmed. Feel angry and pissed off that my beautiful boy is ASD.

Wow, I'm so pleased for you that you are no longer in the awful no-mans land of not knowing! And am offering a cuppa and a hug for the DX too :(

don't be shocked if you get on and off teary, even though you were expecting ASD and make sure you and DH are kind to yourselves and each other.
And remember he is still the same little man he was yesterday before he got his dx.

Try ( and how impossible will this be) not to worry too much about the MRI or size of head, DS has a big bonce and his MRI was fine.

Get a good bottle of wine in :)

It's a very raw time, even if expected. As carrot said, he hasn't changed, he's still your lovely boy and his personality will always shine through any DX. XX

Thanks, i'm very tearful today, but i'm off work today so it doesn't matter. It has hit DH hard, even though we were expecting it. DS is such a gorgeous boy, very beautiful. We will try to be kind to ourselves and be brave, but it's going to be tough.
Just glad it's all happened fairly quickly, dx within 3 months of initial referral. Need to start to look at the transition to school in Sept now, and have already made some phone calls and emails.
Also have to think about DS1 now, as there are aspergers concerns over him as well, and we have to go back in June. Although his concerns are very mild, not as bad as DS2 who now has his dx. I don't think DS1 has a huge head, but i'll be measuring later!!

You know your allowed not to be brave for a while
and the next round of things will soon take over ( dla, SA,school transotion and your other son) you'll soon be taking it all in your stride and growing that thick skin.

But right now your allowed to be angry, sad, grieve and cry, because you know what?

It's not fair!

Ds still has issues, but he's 12 now and although everyday brings something new, things are a whole lot easier because we are just so used to it. He's doing really well and we fully expect him to go to uni and do something wonderful with his life. Just like we expect ds1 and Dd who are both NT.

It really will be okay x

Very sorry to hear your fears have been confirmed, as carrotcake said it really is not fair. I found the most helpful thing was to throw myself into a plan of action and get working on the next steps to take. I have also found this board incredibly helpful, both for ideas of how to help DS and for showing me that there can be many positive outcomes for people with ASD.
Meanwhile be good to yourself, and spend lots of time with your DS, he is still very young and I have found time spent with my DS, playing, talking, reading, whatever, has paid off big time with both his language and playing skills.