First ASD appointment with Pead on Tuesday. What to expect?

[RandallFloyd]

Just that really.

DS is just 3yo and we have finally have our first appointment.
I'm really stressing about it as I don't do well with the unexpected!

What's likely to happen and how do I make sure I make the absolutely most of it?

Thanks, Polter.
We've waited so long for the bloody appointment that I'm properly worked up about it now!

I've written a list of things I think are relevant and I've got his red book but there's naff all in that so I can't imagine how it would be any help. (The HV at his 2 year check didn't pick up anything, but that's another story)

Definitely a good idea to ask for an email address, I would never have thought of that.

According to the letter it will last 30-45 minutes. I've got visions of the Spanish Inquisition!

I think my main worry is that I'll miss something. That I'll whitter on about the things I think are significant and miss something really important that I don't realise is relevant iyswim?

It just feels like there's so much riding on this one appointment that I can't afford to get even one tiny bit wrong.

In any case make a list. Leave one copy with the paed. We could not cover everything in our first appointment but the paef read the list later on.

DOn't get your hopes up too high. I was a bit deflated after our first appointment. A lot of uhhs and ahhs. Could be this, could be that.... lets wait and meet again in 6 months and see if things have improved (no, they did not and I
knew they wouldn't). We received a dx for autism 1 year after the first meeting with paed (even though Dd is very severe).

Paed might refer you to Salt and/or Ot to get their input as well. It is a long a slow road in most cases.

It's apparently at least an 18 month - 2 year wait for a diagnosis in this area. It's very reassuring to hear that he kept and read the list you gave him though.

I think all I want from this first appointment is to know that someone is taking us seriously. To not be fobbed off. I just want some sort of rough plan and something I can take back to the pre-school so they have to listen to me, not humour me as one of 'those' mums.

Referral to other departments would be great, especially SALT as his speech is amazing but it's almost all echolaic. There's a massive gap between what he says and what he understands but it's so hard to get people to see it. The idea that someone might 'get it' is almost overwhelming.

One piece of advice we were given was to talk about it like it's DS at his worst, on his worst day. As parents we are used to talking positively about our children and minimising things and excusing them, and that can be a hard mindset to get out of, particularly if they are in the room.

Good luck!

That's one of my worries actually.
DS is my only child so I have nothing to compare him to.

Hi,
I'm new and have a 4 yo DS with suspected high functioning ASD. We had our paed appt in May. Both us and the school already suspected ASD before this appt so I went armed with a diary, a list of 'behaviours' and some video footage of our sons tiptoe walking and rituals and things. The paed watched some of the videos, asked lots of questions and then asked me to email his secretary the list and the diary. I Keep it all on the ipad. With that he referred us to the local ASD team and they accepted the referral straight away. The paed did say that they do like to have enough evidence before accepting the referral but was confident there was enough. We have our 1st meeting on Tuesday with the ASD team, just myself and my husband and I will be going armed with the same again. I hope that helps and good luck.

That's really useful, thank you.
I don't have any recent videos so I'll try and get some today and tomorrow.

What sort of questions did he ask? If you don't mind me asking, obviously.

Hi Randall.
I don't mind at all. I have been finding it very difficult going through all this blind so to speak.
He started by asking about DS general developement. What age did he start walking, talking etc. he was a late walker and did have speech delay which the therapist blamed on his late walking ironically. He also asked about temperement and what age did I start to notice changes in behaviour. Luckily I remembered this well.
He also asked if DS is strict with routine and whether he has any rituals. And also about his eating and whether he shows any aggression or temper. As DS was in nursery he also asked about his acedemic abilities and whether the school had spoken to me and what they had said to me.
He asked DS to draw him a picture and there was a big box of lego in the office which DS played with for the whole time other than to draw the picture. He did note in his letter to the G.P hoe DS had made a complex steucture from the lego.
He also asked if DS has difficulties changing from one task to another. If I answered yes to any question I was asked to give and example or show a video. The paed himself is a specialist in ASD but in this area is not allowed to diagnose himself but it has to be from the ASD team. He has stated that he suspects high functioning ASD. It was quite a positive experience and at last I didn't feel like I was going mad. We were there 50 minutes all together. Feel free to ask me anything else.

Thank you so much, it's the not knowing what to expect that's killing me so that all really helpful.

The only one that I struggle with is the routine/rituals bit. I never know quite what they mean. He's only 3 and XDH and I work our schedules around him so he's never had a routine as such.

With him, the ritual stuff is more how he plays and how repetitive his playing is.

I think that's where as parents you tend to not notice until someone either points it out or it becomes really obvious. We didn't appreciate DS need for these things until it caused issues. For example he insited on having 5 spoons for breakfast and would literally scream and refuse to eat if I tried to make him only have one. But the paed was nodding away when I told him this. We bath the kids every night but say one night something has caised us to be really late, we will skip the bath. DS has no problem skipping the bath but has a problem trying to follow the next steps without it, becuase we have removed part of the routine. He has had these difficulties since he was 2 but we only started piecing it together ealier this year. Another one I hadn't noticed until recently is that he only likes to go out once per day, in the morning. If we need to go somewhere in the afternoon he has a major meltdown every single time. This became evident with him being at home every day during the summer holiday. In the mornings he asks how many places we are going, where we are going and always follows with 'and then are we going home?' It's these little things where his is rigid, ritual and routine and struggles to cope with changes.
Sorry going on a bit now lol.

No, it's all helping, honestly.

You're right, so much of it I don't notice. He's my only child so I have nothing to compare him to.

I'm glad it's helping. Like I said we have struggled especially over the last 12 months. We get no support from anywhere and have basically been told that we wont until DS gets a diagnosis. Which is crap.
I never knew a thing about autism and stumbled upon by accident really, looking up why my DS may be the way he is. I'm glad I have though because everything makes perfect sense. Well it makes sense, but it doesn't offer answers.
We have 2 children that are older than him and 2 that are younger. And to start with he was a carbon copy of our eldest son, who also has difficulties. But as the time as gone on we can definitely see that the youngest has much more severe difficulties. I always blamed the way our older son was on his early childhood being unsettled. But younger one couldn't have it any more different yet he still has the same difficulties only worse. The best thing for you on Tuesday is to go in confident. You know your lo better than anyone. Mother's instinct and all that. The paed will ask all the right questions because they will be looking for specific answers. The hardest thing is all the waiting. It's driving us mad to be honest.

You've really helped me, thank you.

Now, if DS can just get through one night without at least 2 major night-terrors I'll be able to peel myself off the ceiling, hopefully!

I hope your DS gets his diagnosis soon, the waiting is the worst part isn't it.

That's it isn't it, vindication.
Against everyone who spends so much energy telling you how 'normal' your child is!

It's a strange feeling though. I mean none of this his going to change anything. DS is who he is. I just have to make him jump through hoops with me for as long as they ask us to so we can get them to give it a name because without a name you're on your own.

(I may be feeling slightly cross with the system at the moment!)

Good luck for tomorrow Randall. Please let me know how you get on. Hope you had a good sleep last night. Our little one has me up virtually every night. He has a thing about his blanket being just so and if it moves he freaks out. It's a shame because he doesn't get good sleep either. And is stressed in the night. We have night terrors and visions and all sorts with him.

As for the system. It's ridiculous. According to the NICE guidelines it should only take 3 months from referral to diagnosis. We have already waited 4 months since referral and are only having our first appointment. Not even an assessment booked for DS yet. And we only got that because I phoned them constantly begging to get the ball rolling. They said at first it would be November before myself and my husband were interviewed. That would have made it 6 months from referral without even a hint of any assessments. What frustrates me the most is the lack of support.

Thank you for asking.

It went fine, pead agreed he meets a lot of the criteria, definitely enough to warrant further investigation. He's referred us on the the assessment team.

The waits are ridiculous though, you're right there. We were referred by our GP 7 months ago, turns out that the referral got lost so it's a very good job I chased it up! Now there's another 6 month wait for the assessments to start. They then take a further 6 months to complete so at least another year until we get a diagnosis, maybe longer as he's so young apparently.

It's a joke, it really is.

I wanted to thank you too, Polter, and all the ones on my original thread.
Without your help I would probably still be faffing around!

Thanks to your help with what to look for and how to prepare, he had agreed to refer us within 10 minutes despite the fact that DS behaved impeccably the whole time we were there

We're still at the 'he may have autism - he may not' stage but the first hurdle is down. Just a hundred more to go!

I'm glad the initial appt went well.

Get the numbers of the clinics, and keep politely phoning to check how the waiting lost is going. Get your name down as being able to attend short notice cancellations (if you are, of course). Make a (nice, polite, concerned-mother) nuisance of yourself, and it may help bump you up the lists (if only to get rid of you )

How old is your ds now? Don't listen to anyone saying there is a minimum age for dx - this is usually only to 'manage' their lists and budgets. Try to find out what diagnostic tests they use in your area, and ask when they will be administered - with dd1 I was so clueless we ended up have Community Paed appts x3 (minimum of 6 months between them, usually more like 8-9 months) before we wished up that we were being kept in a loop - none of the comm paeds we saw were qualified to dx, so all they could do was re-take history. The third one we saw was a 'good guy' and so thoroughly fed up with the crappy holding pattern (which left children like dd1 - nonverbal, severe, no play skills or functional communication at all - in limbo with no support) that he spilled the beans and told us who to ring and what to ask for.

She was dx'd less than 6 months after we saw him, from a startpoint of no assessments having been done (only history taken and re-taken). And she was only 2.8 then. It can be done when they want to (and indeed, if you went private, you would likely get your answer in a day - not always, but usually - so the 'it takes a year to dx' type statements are usually just treading water).