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Diagnosis: Autism

(14 Posts)
OldAntiquity Thu 27-Nov-14 10:28:19

This is my last thread

Last Thread

Just putting it there because I know it's been helpful as a lurker to read people's stories.

It's been a rough year but he was diagnosed with autism just before his 3rd birthday, in fact the diagnosis letter is dated on his birthday, happy birthday kid! In the end I just felt relieved we could move forward as it had been his 2 year check when it was obvious more was going on that perhaps hearing problems.

So, I have questions. Basically his diagnosis says "Autism", nothing else. It was the community paediatrician who diagnosed him but he did have a regression (lost speech & some skills) and his hearing & genetics were fine & SALT report was consistent with autism. I guess maybe I was hoping for something more in depth, for more of a clue, but I guess it can be variable.

And it's no surprise I've signed up again today because he has a taster session at nursery/preschool which I'm dreading. Firstly because I've mostly avoided typical children because it hurt a lot to see typical development. Secondly because everything can be so difficult at times. Even when he complies with things! Like in an exchange to tell him to sit down he could easily yell NO SIT DOWN and then sit down! And he likes to gather multiples of things together and he likes to drop things over his shoulders. But he also loves a lot of typical nursery stuff & we've been working on skills with Portage. And they have Autism Outreach there, I think from the special school. And their Ofsted is good about special needs.

He will have a home visit as well, but should I also prepare a document. I probably should shouldn't I, so things aren't missed. I just worry a lot. Like he can get angry about something and do a rage yell & if left alone it will literally last a minute or less, but if you try to touch or interact with him it will prolong it and possibly cause him to lash out.

Also, even with professionals so far it seems difficult for them to understand he's very intelligent even though he doesn't come across that way especially as he won't perform on demand!

Then there's DLA, should I just try for it? I'm not sure what's typical. He couldn't speak to strangers, but if they made him laugh he would just go off with them. Mostly he refuses to walk because of the uncertainty I think and I couldn't trust him not to run into a road if he was freaked out, which could happen as he has some sensory issues, but they're milder than they used to be. Though if he saw a car he'd probably run right to it. But aren't 3 year olds random anyway?

Sorry, this is an essay. I'm massively stressed about the nursery this afternoon even though it's only an hour! And when he starts it doesn't have to be every day, and I could stay. But then that's it's own problem because if I stay then he will expect that and whenever I don't it will be a very traumatic experience and he will have to find his feet as much as if it was the first day! Sorry, going on again.

OldAntiquity Thu 27-Nov-14 10:39:41

if he saw a CAT not car!

Greenbootsbell Thu 27-Nov-14 13:03:52

Hello - quick post as in a hurry but just wanted to say yes, apply for DLA, it is worth it, I put it off for ages, then got it & actually the money would have been handy - can put towards stuff for DC that nhs doesn't fund
Secondly mindfullness is brilliant for helping with stress. Was recommended on here and is great.
Thirdly hope taster goes well. There are some great nurseries out there. Hope yours is one. (Ours wasn't but have found a great school. It makes a real difference)

Lifejustis Thu 27-Nov-14 16:44:53

Hope the taster session went well. My DS has ASD. He's been at a mainstream nursery for almost 3 months. Diagnosis came through after he started nursery.

I would say, let the nursery know about what makes your son happy, what's likely to make him upset, what's likely to comfort him, what's the best way to handle tantrums etc.

Ask to speak to the SENCO at nursery, speak to your DS's key worker regularly. Also ask nursery if the early years advisor can come into nursery observe him. Early years advisor will then advise about possibly getting funding for 1:1 support or small group work.

My DS is starting to settle in okay. It has taken a while. It's still up and down but not as bad as it was in the beginning.

Hope today went well.

OldAntiquity Fri 28-Nov-14 14:26:50

Thanks, I did manage to read your posts yesterday smile

Taster session went REALLY well! He absolutely loved it! It has a great outdoor area so of course he was mostly there. He met the teacher and TA whose "group" he's in (the TA actually popped in to see him as she doesn't work afternoons!) And they were really interested in him and he even spoke to them in the end! They asked tons of questions about what he enjoyed and what sensory issues he has and how he prefers nappy changes to be etc etc. I spent an hour talking I think!!

The head is on the ball and getting in touch with those involved with him already and 0-5 to see about funding for a 1:1 for him. I can talk to them any time, call in any time, he can do whatever days are suitable and I'm doing a document for them. It seems really fantastic!

I never sent my ds1 there because they had a reputation for being very much about teaching and fixed "lessons" rather than free flow and being less loving with the kids but it's all so different now! My friends kids have just been through it which is why it was on my radar.

So I'm hoping it's going to go well!

And I will get my finger out and apply for DLA.

Tunna Fri 28-Nov-14 15:02:26

That's brilliant news OA, it sounds a lovely place.

You're probably aware of this, but if not, go to the cerebra website as they have a guide for filling out the DLA form. I used it recently when filling out my DSs application (also ASD) and it was really helpful.

OldAntiquity Fri 28-Nov-14 15:40:00

Thanks Tunna. I have had a look at that before and will be consulting it. I just never think he's that bad. But I had to go through his stuff yesterday and reading the description of him in the paediatrician report last April he sounded very impaired, much more than I remember him being. No wonder the childminder was urging me to apply for DLA! (She has it for her youngest).

2boysnamedR Fri 28-Nov-14 19:53:53

If you have a carers support group they can help with dla forms. My ds got dla just after he turned 2

Lifejustis Fri 28-Nov-14 19:57:03

Glad your DS enjoyed nursery. They sound really supportive smile I havent done the DLA (we don't have a NHS diagnosis yet), I was told that when applying for it, to think of the hardest day and times we've had and then fill it in.

OldAntiquity Fri 28-Nov-14 21:24:02

I've got used to what is our normal so I think it's going to take some work to consciously think of things. Our days "feel" easy but that's because so much planning goes into them and I've forgotten the amount of things I avoid. Anyway, I need to actually get the thing!

Greenbootsbell Fri 28-Nov-14 21:29:03

Brilliant about taster session
You have landed on a good nursery!

Ring them up (the DLA people) & get the form sent- then it gets backdated to the day you called.

Greenbootsbell Fri 28-Nov-14 21:30:02

It asks for supporting paperwork eg paediatrician letter - this info will back up your application

OldAntiquity Sat 29-Nov-14 06:19:43

Do I have to get specific letters from places? Might not be so reasonable to do it now instead of the new year!

Greenbootsbell Sat 29-Nov-14 07:24:18

No just any copies of letters you happen to have are useful supporting info

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