DS with ASD starting school Sept 2018 - I am feeling overwhelmed

[Hurricane74]

Hi

My son has a diagnosis of ASD and is due to start school next Sept. We are in discussion with the LA about an EHCP and have a Joint Assessment Meeting for early December. I had hoped he would go to a mainstream school and see how it goes, with the option of a school with an autism unit or a SS is things don’t work out. But now am feeling very doubtful a mainstream school could meet his needs. We had a report from the LA yesterday based on observations of him at preschool and it makes such sobering reading. It puts his developmental age at 8-20 months for most areas (he is 40 months) and his understanding and listening skills at 0-11 months. (His moving and handling skills are almost age appropriate). His main issues are social anxiety, sensory issues around noise and his lack of understanding and speech. Has anyone experience of a child with similar issues managing in a mainstream setting? If so, what kind of provision did you ask for and receive? Thanks for reading.

Good luck with swimming tomorrow. You definitely need some rest after the emotions of the day.

I'm glad you got the results light and that you're feeling ok.

I'm currently writing the section A for the EHCP, which is all about ds. I remember someone giving me the advice that if my ds was to read it when he was older, it has to be something that won't make him miserable.

I think it can be easy for professionals, who only see our kids for a short time to focus on the negatives, so I'm glad you got a well balanced report for your dd.

Light I’m glad you have the answers now and you can carry on supporting your dd in the way you have been. Be mindful that your emotions may go up and down. That’s ok. It’s a process and we need time to absorb and process these things.

It’s great too that her report is written so well.

This has made me question our ‘diagnosis’ of ASD and how formal it is given we have not had an ADOS. At our appointment they certainly told us that’s what they believed it was and gave me the ‘he’s still your lovely little boy’ spiel (of course he was, to us he is simply amazing). Coming a week before Christmas I would have hoped that if they had any doubt that would have been made clear, at that point it wasn’t presented that way. However the report they sent out states that it’s ‘likely he meets the criteria for a diagnosis of ASD’. I don’t know if this is standard terminology, ADOS was never mentioned to us, they only said his lack of co-operation meant it was hard to determine how high functioning he was. Anyway, we are back there in a month so I guess we can ask then.

Oh, and when I queried what they had told me with our NHS SALT she told me it would be a formal diagnosis and she did not mention ADOS either. I wonder if some hospitals do not use it?

I think practice around diagnosis and the admin of ADOS varies open. We were not given a score and told that we would not get any indications of severity within the domains on the report as they didn't believe that was appropriate after a one off assessment . We also had the line likely to meet the criteria for diagnosis.

We definitely did ADOS as DS had to do the set of exercises but I know some ppl in different boroughs have had the session videoed for separate analysis, others had to leave their child in a separate room for the session. The lack of consistency seems really strange when the context must have such a big impact on a child's responses. It also has a huge impact on how you receive the news.

Thanks Sue, I suppose the ‘likely’ is just standard then as there is no definitive way to determine, such as by blood test. It’s highly likely they had planned to do some ADOS-style tests but perhaps his complete inability to cope, due to anxiety of being in that particular setting, means he failed it outright!

His SALT has certainly seen how he responds in social scenarios and she provided a detailed report to them beforehand which questioned any ‘underlying diagnosis’ as being the cause for his challenges.

DH says I’m over thinking it. He’s probably right, I usually do

Light did they give you any idea on what support was available? Courses or playgroups and the like?

I think Sue's right, it seems to vary from area to area. We only went to the CDC twice. Once for an initial pead assessment (which they don't do anymore) and once for the ADOS. Then we were discharged from the service. We didn't get a score either but did get a diagnosis letter with strengths and difficulties.

I also think the age of the child and whether they are verbal or not changes the way they asses.

Thanks liv. I was a bit anxious that I’ve been misleading people by saying he has a dx or that he may not get the support he needs without one.

We got the report from our OT assessment. Under his recommendations he has stated that ds will benefit from ‘1:1 support at all times’. Excellent for the EHCP assessment.

The Ed Psych wants to see us before he does his observation at nursery. Does anyone have experience of this? Are there any specific questions he will ask?

That's great about the OT report open.

We saw the EP before the observation. She mainly just wanted to talk through the reports she'd read on ds. She wanted to know our main concerns and goals, check where ds was developmentally and talk about what she was going to look for during the observation. I think she spent about an hour with me, an hour observing ds and then another hour talking to his key person. The key person should have been in the same interview as me but she was ill that day, so did a phone interview instead.

I don't think they have to do the ADOS. Even though they did it for DD they were emphatic that it is only one piece of the jigsaw and has no more priority than the school observation, developmental history, etc etc.

Our report was very definitive that they are giving a diagnosis, so can't hurt to ask for something clear at the next appointment if yours is not?

There is a two morning course we can go on. Plus Early Bird but apparently that's about a year's wait. And coffee mornings with sessions with OT and SLT available. That seems to be it although apparently we can get access to CAMHS now if there are behaviour problems. I got the strong impression any support is mainly through the school system.

Yes, I think I will ask next month. No point speculating until then, I suppose. I will just tie myself up in knots.

We went to my dp’s for a bbq this afternoon. It was for a birthday and there were lots of people there. Ds did better than I thought. We stayed for 2-2.5 hours and he played cars with two of his cousins. He went into the house a few times to get away and then said he wanted to leave. Fell asleep in the car and then cried when he woke up because he wanted to be at the party . Was pretty easily distracted with Toy Story though! I half thought he wouldn’t even go into the garden so a good result I think.

Hi all,

Sorry for the radio silence. My DS has taken us all down with his vomiting bug - including my parents! - so it's prettt grim here (just in time for half term 🙄).

Just wanted to say that I'm glad the report was so thorough/ considerate Light and that you're ok.

Thanks all for your help with the school angst. I really appreciate everyone's time and thoughts. Still unresolved here! Will check in properly when it's not quite such a puke fest here.

Ugh sorry seeking! Hope you all feel better soon.

Great about the garden party open.

I hope you are all better soon seeking

Oh God, vomiting is the worst! Hope you are all better soon.

Oh seeking how awful. So hope you all recover quickly.
So glad the report was fair and well written for you Light it makes a big difference I think in how everyone comes away feeling.

I'm also ill, DS was vomiting all day sat, so far I just feel awful. Could have done with boys being in school really.
Sounds like everyone has been moving forward. We've just been on holiday and was expecting draft ehcp to have arrived while we were away but nothing.
We were told DS met criteria for diagnosis but we are still waiting for the actual report, been over two months now waiting for report and for draft EHCP.

Seeking and Mama hope that you're all feeling better soon.

Light and Open glad to hear that the reports have been helpful.

Open my son's Ed Psych has been involved with him for about 3 years so it might be rather different but she has seen him with me at home and at nursery. It's been quite helpful as he is completely different in different environments (at home - a boisterous, daredevil chatterbox at nursery - limited speech and timid). I think it has helped her see his strengths more and identify what support he needs. I think they want clear background info and your assessment of what helps and hinders them.

I was rather anxious about how my boy would cope this weekend as I had a reunion with some old friends (including partners and kids there were 15 of us). My son was amazing, one of my friends commented that he was the best behaved child (and he was the 2nd youngest). I think though that they now all think I have dramatically overstated his problems. Since we said our goodbyes at lunchtime all I have had is screaming and hitting and throwing. He must have been working so hard to cope with it all. Roll on bedtime!

Hope you're better soon Mama. That's very annoying about the draft.

Dimples that's great about the meet-up with your friends. I'm so glad it went well for you! Hope your ds calmed down a bit by bedtime.

Sorry to hear about the illness wishing you speedy recovery dimples and seeking.

Sounds like you’ve had good reports light and open. It helps to have a balance not just doom and gloom.

We had the meeting with the ed psych which was a bit of non event. She told us nothing and just asked lots of questions. While his key worker outline issues we’d not heard about at all during this year!

We took him the only birthday party he had been invited ever at preschool. He was doing quite well and then a group of older kids called him a ‘stupid dummy’. I think because he couldn’t follow the rules of a game they were playing. My heart broke a bit he was trying so hard to join with the other children. But they just didn’t want to play with him.

It makes me worry for school. I spoke to the senco about social skill support and she keeps talking about identiplay. From what I know it’s more about learning to play with toys in a more typical fashion. But that’s not a huge issue playing with others is. He wants to be social but lacks skills. I worry that without suport he’ll soon give up and be a very unhappy little boy 😪

I wouldn't give up on the solo play skills Soulcake. DD is starting to come out of herself a bit more and I think confidence is a huge issue. If they are confident and having fun playing by themselves they are much more likely to feel confident to join somebody else's game (or, more likely, to have a peer see them having fun and come and want to join in). Can they do lots of scaffolding (just prompting DS to accept if a peer wants to join in, and helping him notice similarity with peers or peers doing things that are interesting/motivating for him?) I think this is probably what has been most useful for DD at pre-school, but I'm worried that in reception the teachers and even TAs may be too busy to notice and do this stuff.

That's awful soulcake, sorry that happened to your ds.

Like light say I think being more confident and inventive in their own play can make children more confident in joining in and playing with others.

My ds is still at the playing alongside stage with most children but that is huge compared to where he was a few months ago. At home with his sister we've put a lot of work into making him think about her more. So every time he has milk or a biscuit, we give him two and make him take one to her. In the last couple of weeks they have started turn taking with each other which is a massive improvement. Turn taking seems to be the key with my ds and we and his therapists have worked on it a lot.

seeking & mama I hope you’re both feeling better now.

mama sorry about your paed’s report and EHCP. We waited over two months for the paed’s report too and had to chase it several times. I hope they turn up soon.