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Finally got an ASC diagnosis but zero support

(16 Posts)
ShouldHAVE Wed 31-May-17 22:06:59

DD2 (8) got a diagnosis a couple of months ago of ASC. The EP told us that they have to generalise all as ASC now, but she actually has Asperger's.

Anyway, my problem is that since getting the diagnosis, nothing has changed, so I wonder what was the point? I expected that she would get some extra support at school and that we, as parents, would get some support/training in how to deal with her, but it seems we get none of this. Is this normal? The older she gets, the more difficult she's becoming and we're really struggling.

Just wondered what sort of support other people get, whether it's just my particular County that is poor.

Allthewaves Wed 31-May-17 22:43:09

Nope. Sheet of paper saying he has asd. That's it

Marshmallow09er Thu 01-Jun-17 08:03:01

Was it the EP that diagnosed your DD?

There is support out there, but you have to be proactive in seeking it out - and even then it's often disappointing. I've found these boards the best support over the years.

Can you contact whoever diagnosed your DD and ask to be referred onto a parenting course for specific for ASD (usually things like Cygnet or Early Bird).
Similarly get them to write down how they recommend school should be supporting your DD / what she might need help with (it might not be obvious to school), and then arrange a meeting with the SENCO to discuss how they will be supporting her.

You could also ask to be referred to SLT and / or OT (depending on her needs). I wish I'd known to do that from the start.
Unless you ask I think it's rarely offered.

Twinkletowedelephant Thu 01-Jun-17 08:35:32

Dt1 was DX 2 years ago....he hasn't seen a professional out of school ( school got desperate and asked ot to see him while they were visiting another child) cahms won't see him, we were given a list of websites that may help...and I was added to a waiting list for cygnet course ( just completed was very helpful) other than that no.

Thankfully school are amazing and do great things for him

CleopatraTheCatLover Thu 01-Jun-17 13:45:39

Absolutely no support in my area either, 2 HFA ASD children, one is incontinent.

amunt Thu 01-Jun-17 14:15:36

Why do they keep banging on about early diagnosis? If there is no support or intervention, what's the hurry?

Imaginosity Thu 01-Jun-17 16:42:17

I'm in Ireland. I think our health system is not as good as in the UK but I'm happy with the help DS has got. He's under a multi-disciplinary team - OT, SALT and physio.

The OT calls out to his school about twice a year and obseves DS and makes recommendations to the school about adjustments they need to make for DS. He arranged for DS to sit at the front of the class and he has visual reward charts for completing his work etc. DS gets movment breaks and the OT advised the school on how to help DS to regulate himself when he is over active and underactive. The OT got the school to do the alert program and he checks that the things the school are doing to work on DS's fine and gross motor skills and social skills are appropriate. He decides what areas DS needs to work on and advises he school what to do. He explained about DS's sensory issues to the teachers so they have a good understanding now and don't see his reactions as bad behaviour.

I feel ao lucky to have someone that understands DS's needs so well to be involved like this. There has been real improvements in DS's behaviour and ability to cope at school. He goes in everyday happy whereas we used to have mornings where he got very upset. There is less incidents in school than there used to be.

If i didnt have access to this publically funded team I'd go private and get a good OT to help me deal with the school.

ShouldHAVE Thu 01-Jun-17 18:14:49

@Marshmallow09er yes, diagnosed by the EP. We moved house to a different county just before the report was written. Had we stayed, the autism team would've gone into her school and assessed her needs/told the teachers how she needs to be taught, and we would've been booked onto courses straight away. Where we've moved to, none of this seems to happen. I went to my GP to ask for a referral to whichever dept she should come under, CAMHS/community paediatrics etc and she didn't know hmm. I've since found out that she didn't bother referring anywhere! She has now that I've chased it up.

School told me about the Early Bird courses so I am going to ask for one of those when I get referred. I did have a meeting with her head and class teacher, who thought she would easily be managed in class with extra help. I'll ask for another meeting towards the end of term to find out how it's going.

@amunt, my thoughts exactly! It was such hard work, fighting and jumping through hoops to get her diagnosis and now I just feel like what was the point?!

@imaginosity that's really interesting about the OT, I hadn't even realised OTs were involved with ASD children, I've just never heard of anyone else having one.

Seems it's a bit of a postcode roulette.

user1476527701 Fri 02-Jun-17 08:18:53

My son was disgnosed in march and exactly the same, nothing, so why bother I think. School applied for ehcp but we got turned down for assessment so are now having to go to tribunal, hopefully will get there in the end but it grinds u down.

The only thing we have got is at legoland we qualified for ride access pass so we can virtually queue instead of the main queue line

coffeemachine Fri 02-Jun-17 12:48:14

Does the EP suggest she may have ASD?

Just asking as I didn't think an EP would be qualified to formally diagnose autism.

this is usually done by a multidisciplinary team.

zzzzz Fri 02-Jun-17 13:24:14

There is support out there, but you have to be proactive in seeking it out - and even then it's often disappointing.

This is not the case in most areas.

More pragmatically support in school has and I hope always will be based on need not dx. What dx will help with is, supporting a DLA/carers application, disability rights, shorthand for the sort of difficulties she might have at clubs/hobbies (two edged sword), self esteem and understanding who she is, access to community dentistry/jumping queues for slots in operating theatres etc.

It's a bit like being diagnosed with having one foot. Your family have probably noticed (grin), you have probably already worked out how to ride that bike or that you won't bother, but it makes it quicker to explain and more importantly because most autistic people look pretty unremarkable it protects you from the "she's just naughty/you're a crap parent " loud mouths (a bit).

As far as the aspergic/autistic/ASD/asc thing goes, she's the same population as other people with autism she just got lucky and didn't get language disorder as well, which makes things even more difficult.

ShouldHAVE Fri 02-Jun-17 14:10:14

@coffeemachine she has a formal diagnosis of ASC - seems they're being PC and have replaced the 'disorder' with 'condition'. I checked back and it wasn't an EP who gave the diagnosis, but a Consultant Clinical Psychologist.

ShouldHAVE Fri 02-Jun-17 14:29:17

@zzzzz no-one has mentioned putting in for DLA. Are ASD children generally entitled to this?

coffeemachine Fri 02-Jun-17 14:37:40

autism doesn't you entitled to DLA. You don't actually need any diagnosis to get DLA.

the criteria for DLA are that a child needs substantially more care and support than a child without these difficulties. My DD with ASD and LDs e.g. needs constants help with everything , has full time 1:1 at school, wakes frequently at night, can never be left alone, requires supervision at all times and we get DLA.

zzzzz Fri 02-Jun-17 15:40:31

Many disabled children qualify for DLA. The form is on line.

The hive mind of MNSN is where I found pretty much the only help. Help with practical day to day and legaland help to grow the backbone you need to survive.

They're funny toogrin

Oblomov17 Mon 05-Jun-17 19:08:49

Nothing. Diagnosis years ago, but School claim they see nothing and he's 'fine'. So we have nada, ziltch, niche.

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