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why did you seek a diagnosis?

(25 Posts)
Crawling Tue 06-Nov-12 12:54:58

Can I ask what diagnosis your child has/will have? What you hoped to get out of a diagnosis (in the way of support from the systems)? And what you actually got in the way of support from any professionals (e.g one to one specialist school funding from dla )?

Its just i had the assesment with ed pysch and come out of it unsure if it was good or bad and i have pediatrician tomorrow and your aswers will help me decide what i want to get from a diagnosis for dd. Tia for any replies.

bigbluebus Tue 06-Nov-12 13:20:00

In our case with DS it was because his behaviour was poor at school and they were struggling to cope with him. We got a diagnosis of HF ASD and that helped us to get a statement and funding for 1:1 in a mainstream setting. DS is academically very bright, but without support he would not have coped in a classroom setting. There is no SS in our area that could have met his needs, so staying in MS was the best option for him.
His statement also got him into the outstanding secondary school just out of our catchment area,(in a year when it was heavily oversubscribed) instead of the mediocre school that all his peers went to - where the SEN dept is poor and would have been a disaster for him.
So diagnosis has definitely been worth it for the statement alone.

PolterGoose Tue 06-Nov-12 13:20:21

Message withdrawn at poster's request.

Crawling Tue 06-Nov-12 13:26:33

I am not concerned about label more i want to know what provisions have been given and for what reasons as i don't know what help is available so don't know what provisions i can push for that will benefit dd iyswim.

WilsonFrickett Tue 06-Nov-12 13:30:09

Ours was so borderline that getting a dx became something of an obsession for us, if I'm being honest. It was like I needed someone to tell me I wasn't imagining things. Then when I got it, I fell apart and didn't want it! <fickle>

Now we've had it for 3 years. It really helped his transition into school and even in the 2.5 years we've been in school I feel having a formal dx has protected his support. I've seen more than one child be id as needing 'informal' support only for that to melt away.

It's also helped me understand him. I can't stress enough how important that was for me, although perhaps another parent would have been better at understanding and accepting his quirks, I was not (to my shame). Now at least I understand he's not trying to push my buttons, he really just can't help it.

So, support (formal) and understanding (mine), to answer your question.

troutsprout Tue 06-Nov-12 14:48:19

Ds (15) is a well behaved fairly bright boy who ( in primary) would happily sit at the back of the class bothering no one , doing nothing in a world of his own.
He was beginning to notice that he didn't fit. He was beginning to think he was somehow bad because he didn't fit.
We got the diagnosis so that he could think ' I am different because I have Aspergers' ... Not ' I am different because I am a bad person'
He has dx of Aspergers/Hfa...with dyspraxia
He has no statement ... But he has funding for 15 hours at school. He does not need 1to 1 so his hours are spread (with another boy on the same level) . There is a TA in nearly every lesson. He gets a what we call a 'nudger'' in exams to stop him drifting and he gets extra time also.
As a flag to all and sundry...The diagnosis has given my fairly vulnerable boy a very valued layer of protection... I hate to think how he would have been at secondary without it.
The dx has also given access to devices outside school.

PolterGoose Tue 06-Nov-12 15:03:36

Message withdrawn at poster's request.

Crawling Tue 06-Nov-12 15:41:18

I think and ed pysch and Salt agree that dd has autism not asbergers with medium functioning. Dd has complex speech and language delay she gets very stressed by people and hides while rocking sucking fingers stroking her ear and rubbing her feet. She has moderate sensory issues but high repetitive and stereotyping behaviour . When stressed or routine is broken Dd becomes aggressive hiting me puling her eyelid and eye poking and recently she has started head butting the floor. She has a few words but does not use them with anyone but me and dp she is 3 she is not potty trained and does not show a reaction when she is wet and is very fussy with food and does not seem to feel pain she is very solemn and rarely laughs smiles or shows any acknowledgement that people are there. I saw ed pysch and the truth is I feel like i am drowning i have no idea what provisions are given for children like dd i don't know what she needs nor do i know what to push for or what she is likely to get. Basically i feel so scared And ignorant and want to know what help someone with dd symtoms is likely to get need.

Crawling Tue 06-Nov-12 15:46:56

I just want to help dd but i don't know how to help or what she needs i wish someone experienced could come see dd and tell me what they would push for i am in over my head and frantically trying to learn to swim but i don't know how to help.

WilsonFrickett Tue 06-Nov-12 16:04:07

OK, take a deep breath. The first thing to focus on is tomorrow and the pead's appointment. Print out what you posted at 1541 and add anything else you can think of between now and then. Keep breathing and try not to think any further ahead than tomorrow. If the pead gives you a diagnosis there and then, we'll be able to help you further after that. And remember, the pead will only be looking to diagnose, not to then 'give' you support, that will come from other agencies so it's not as if you need to be pushing at that appointment.

Just make sure you're prepared, take your list, if possible take someone else to mind DD so that after the pead has seen her you will have the head space to listen to what the pead has to say. It's not essential but I found it easier to speak freely if DS wasn't in the room.

Baby steps ((hugs))

Crawling Tue 06-Nov-12 16:15:50

Wilson your right i just feel so panicked as pead is first thing in the morning ed pysch was yesterday and I feel so useless and worried i am calming down though now thank you.

WilsonFrickett Tue 06-Nov-12 16:22:15

I know sweetheart. Keep posting x

PolterGoose Tue 06-Nov-12 16:56:04

Message withdrawn at poster's request.

zzzzz Tue 06-Nov-12 17:16:39

My ds is obviously different. He is severely language disordered and something??? We have no dx despite very thorough assessment over many years. We wanted a diagnosis so that we could learn what others had done and how that effected outcome(by which I mean levels of independence).

Ds is now 7 and the elusive dx matters less and less to me.

Forging our own path for the child we know and love deeply is satisfying and successful. I thought when we started that professionals knew so much more than they do. Our paediatrician is brilliant at taking what I think seriously and is impressed with our progress, but then he has so little concrete help to offer.

Ds was 3.5 before he said any of our names. He can read, is toilet trained, talk clearly though more like your average 3 year old. He likes star wars, and can make jokes. At 3 he was very different.

The assessments are utterly exhausting. I felt like I had a continuous hang over. I could barely string a sentence together.

WilsonFrickett Tue 06-Nov-12 17:30:31

I think I did have a continuous hangover. Not my best hour (or 18 months) sad

Crawling Tue 06-Nov-12 18:29:55

Yes the assesments are frustrating and hard its amazing to think so many people have no idea how hard and exhausting getting a diagnosis is. I have to say for me the waiting not knowing whats going on and if you will be taken serious are the most upsetting.

WillowinGloves Tue 06-Nov-12 18:52:05

Yes, yes, what Wilson said. A dx really helped me to understand my DS and have confidence in how I dealt with him - before that I was in such conflict about how I felt I was supposed to deal with him as opposed to what my gut instinct was telling me.
And yes to what troutsprout (and others) have said - a dx does give you something to wave about at school when you need to make demands on the system. That's very much needed at secondary level.
All these meetings are very stressful Crawling and it takes time for you to find out what you need, what's available, and what you're happy with for your own DC. When I read your posts it reminds me of where we were at the beginning. There is a standard book on AS, by Tony Attwood, and at first I couldn't even bear to have it in the house for too long - I would borrow it from the library, read a bit and take it back because I found it so stressful! Bit by bit I read it and took it all on board, but it took me three years to buy it!
Main thing is, getting a dx doesn't change who your child is, she would be as unique after it as before it. I think I thought a dx would 'make' my DS into the case histories I read about - and that's obviously not true! He is still himself, as he was before (and still lovely!)
Good luck tomorrow. Take a notebook and write it all down!!

ArthurPewty Tue 06-Nov-12 19:01:41

Message withdrawn at poster's request.

StarlightMcKenzie Tue 06-Nov-12 19:11:02

Who accused you of being crazy L?

Ineedalife Tue 06-Nov-12 20:02:13

I sought a diagnosis for Dd3 because I sensed that her quirkiness and extreme anxiety were going to make school very hard.

Many people thought I had munchausens by proxy, including the first paediatrician we saw and the HT/SENCO at her old school.

But hey surprise surprise she was dxed with ASD on her 9th birthday, 4 years after I started the ball rolling with the GP.

She is supported relatively well in a mainstream school although we are having a few teething problems with her new phase group.
She has had some outside intervention and some great support from the SENCO and her team who are all fab.

HecatePropylaea Tue 06-Nov-12 20:08:58

My eldest has a diagnosis of autism, my youngest, autism and ADHD.

We went through the assessment and diagnosis because we knew they needed the labels in order to access all the support and all the funding (for therapies, 1:1, etc) that they need. Some doors are open without the diagnosis, but many others are closed and we wanted them all open.

And some we kicked down grin

wibbleweed Tue 06-Nov-12 20:25:18

We were originally told (by community paed) that DS2 (5) is 'probably' on the autistic spectrum but we'd be fine and there's no need to seek a formal diagnosis. Fast forward 6 months or so and I realised that yes we DID need to seek a diagnosis - so we went ahead and he is now dx with AS.

We did this mainly because we felt that were were in limbo (is he? isn't he?) so that we could have some clarification one way or another, but also to help us and his sibling understand him better, and, in time, for him to understand himself better too.

In practice, the dx has helped in other ways too. School were far more sympathetic once we had a dx - and he was never considered 'naughty' again. And we've since got a statement and been awarded DLA - again, having the formal dx I'm sure has carried some weight here.

We're now just starting the process again with DS1 (8), who has several traits that are getting more and more pronounced as he gets older. And he's beginning to stick out in the playground, be bullied etc. He genuinely wants to know if he really is 'different' (and quite likely, just like his brother).

Best of luck x

mrslaughan Tue 06-Nov-12 20:31:18

We went through diagnosis, because the child they had at school was completely different from the child we had at home. We new he had a language delay and the reasons for that were quite perplexing..... His SALT had actually graduated him, and he was great in conservations with us, but his language fell apart in many other settings leading to huge frustration( we realize now ) and behavioural issues.
Everyone at school thought he had ASpergers, but we weren't convinced and OT an SALT were convinced he didn't.
We did a multi discipline ry assessment, which came out as sensory processing disorder (sensory seeking) and fine motor dyspraxia. Aspergers hasn't been ruled out - but I doubt at this point (but wouldn't rule it out for the future) we are not going to go through this . He is making huge progress and going form strength to strength, now he is modulated and we understand his difficulties.
The interesting thing with the multi disciplinary approach is that from the team, all bar the one ruled out aspergers, one felt he definately was on the ASD spectrum, but when I asked what more we would do for home that we are not doing now, the answer was nothing., do for the moment we are leaving it there.

ArthurPewty Tue 06-Nov-12 20:36:41

Message withdrawn at poster's request.

Crawling Wed 07-Nov-12 19:09:45

Just to update dd was refered to cahms for autism assessment and ot for her sensory issues smile

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