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DS diagnosed with autism. What now?

5 replies

everybodypuuuuulllll · 27/11/2018 23:01

DS aged 10 has finally been diagnosed with autism.

He's high functioning so although I've been saying I think there's something up for years, when he was younger his teachers minimised my concerns, so we've been a while getting here.
So, I'm not at all surprised. It's just confirmation as far as I'm concerned.

DS has taken it in his stride! I'm really proud of him.

So what happens now? I spoke to the school and it sounds like nothing is going to change (they still won't fund an Ed Psych). He really struggles with school work despite everyone agreeing he's really bright.

The hospital said we'd see a nurse in a couple of months and a paediatrician within 6. I'm not suite sure what for.

Should I be doing something?

Also can anyone recommend any books on ASD for DS?

Thanks :)

OP posts:
BlankTimes · 28/11/2018 11:10

Sorry, I'm really confused, he appears to have a dx but no recommendations or follow-ups apart from a 6 month or so review. Is that correct?

Who has diagnosed him? What's in his diagnosis report? Don't post it on here but read it thoroughly.

So what happens now? I spoke to the school and it sounds like nothing is going to change (they still won't fund an Ed Psych). He really struggles with school work despite everyone agreeing he's really bright.

Look for things like test results in his diagnostic report, how are his scores, often expressed as centiles for things like language comprehension and executive function, processing speed, any sensory issues and all sorts of other things.

What does the report outline as recommendations for school and home? Has a copy automatically been sent to school?

School should implement whatever strategies the diagnosis recommends.

everybodypuuuuulllll · 28/11/2018 17:13

We first saw the paediatrician a year ago, and she referred him for an assessment for ASD, and that's what we just had.

They diagnosed him as autistic at the appointment, and said they'll send me and the school the report, I haven't seen it yet, I'm guessing it may be a little time.

They asked if I wanted to read the report before sending on to the school but I couldn't understand what benefit this would have, and it might slow things down so I said just send us both the report at the same time. (Did I miss something here?)

OP posts:
everybodypuuuuulllll · 28/11/2018 17:15

The school have been giving him support based on him probably being autistic since I told them he was going for an assessment.

But the things they're doing arent' really helping, and I don't think they're really providing him with enough appropriate support. They seem to have a bit of an attitude of - well we tried x & y, which is supposed to help - if it didn't help, then DS needs to try harder.

I haven't had a formal meeting about the diagnosis but had a chat with DS's class teacher, and she said they're pretty much doing what they can, and there's no funding for an Ed Psych.

OP posts:
everybodypuuuuulllll · 28/11/2018 17:16

What can I expect the report to cover?

OP posts:
BlankTimes · 28/11/2018 20:33

They asked if I wanted to read the report before sending on to the school but I couldn't understand what benefit this would have, and it might slow things down so I said just send us both the report at the same time. (Did I miss something here?)

Reading it first just gives you chance to query anything and clarify before it goes to school.

But the things they're doing arent' really helping, and I don't think they're really providing him with enough appropriate support. They seem to have a bit of an attitude of - well we tried x & y, which is supposed to help - if it didn't help, then DS needs to try harder

That's a dreadful attitude, school telling him to try harder not to be disabled.

Hopefully they won't have that option when the report arrives.
Some schools are much better than others In some schools it's not worth fighting for what a child should have because school frankly don't want to be bothered and they never implement what a child needs, they only make excuses. If that's the case, seriously consider moving him elsewhere that has great SEN provision.

What can I expect the report to cover?
All areas he needs help with, assessment reports are pretty dismal reading as they are negative but they need to be like that so you can get the right sort of help.
It should detail all the tests they did and his scores. It's usual to find a spiky profile something like reading age 4 years above chronological age, reading comprehension 6 years below chronological age, that sort of thing. Some things he'll have scored well above average, some his scores will be within the ordinary parameters and some he'll have a definite deficit.

To have a dx of ASD, he'll have had to meet the criteria which is "The characteristics of autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests since early childhood, to the extent that these "limit and impair everyday functioning".
More info www.autism.org.uk/about/what-is/asd.aspx

Whilst you're waiting, have a look at how to obtain an ECHP, plenty info on these boards if you search previous posts. If you start planning for that and getting it underway from when you receive the assessment report, you'll have a good idea of what support he needs for going into secondary school and which schools in your area may be a good choice for him.

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