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ASD diagnosis - please help if you can!

(13 Posts)
WedgiesMum Sun 05-Oct-08 16:49:21

My friend occy has posted this (twice!!!!) in the education special needs section and really could do with it here but us struggling to do it. I know you all can help so to give her a hand as she is new to all this I have copied it over here.

Thanks!

Hi I'm new to mumsnet although have heard loads about you from my best friend Wedgies mum. I'm a specialist advisory teacher for ASD and am studying for a post graduate diploma in ASD. I have an assignment that goes as follows "Diagnosis is usually more helpful to parents than professionals" Discuss this statement in relation to how helpful a diagnosis of ASD has been in your work with children and their parents.
I wondered if any of you who have had a child diagnosed with autism had any feelings on this, or any information as to how helpful or not a diagnosis has been. I would be very grateful for any response to this! Thanks!!

MUM23ASD Sun 05-Oct-08 19:07:14

well...i'll start this off!!!

For me, with 3 boys with AS and no Statements... the diagnosis has little affect on their educational provision.

However, there are times when it is tough at home, when i can take a deep breath...count to 10 and remember their diagnosis before i react to whatever is going on.

Also sometimes i need the diagnosis to remind me that i am not a crap mum.

A diagnosis is a 'sign post' not a 'label' ... so with it you can start reading and learning about the diagnosis....finding strategies to use...and support from other families.
(a good author that refers to this signpost thing is Mike Stanton)

finally, a diagnosis 'helps' getting services/benefits 'out of school'...like attending Autism Playschemes/after school clubs etc....and ofcourse DLA (though i know a dignosis is not a criteria for DLA awards...)

and don't forget .... no more queing for 3 hours at legoland and the like.... a letter confirming diagnosis allows us to avoid queues....

unfitmother Sun 05-Oct-08 19:40:17

I think the dx can provide parents with reassurance i.e. that its not just them being crap parents.
It provides a justification even just to oneself for odd or downright naughty behaviour.
DS was dxd with AS at 11 but he'd had a statement since he was 6. Another child in his class is clearly Aspergic but is pre-dx, he's on the waiting list. My DS gets a funded place in the Autism Resource Base at the High school and a taxi in, the other boy doesn't though their needs are similar. sad
Whilst I don't diclose the dx to others I know I can if I need to.
As far as professionals go I would hope the dx would ensure greater understanding. It can also be of help to professionals in ensuring they get the additional finance that such children require. DS's playscheme have now been able to apply for extra staff as a result od DS's dx.

magso Mon 06-Oct-08 12:36:05

Diagnosis (Dx) has both advantages and disadvantages. The most important thing is to recognise and then understand a childs difficulties. These are the pre-requisites for supporting the child. As M23ASD says, Dx is a signpost - a quick way to understand likely difficulties and search for ways to help. The downsides can be if your child is atypical of Dx or the public perception of it, if there are other difficulties not explained by the Dx those other difficulties may not be investigated and supported, parents instinctively do not wish to catorgorise or label their children.
Unfortunately, getting understanding and support for children within the education system can be extremely difficult even with a Dx. Without a label its nigh on impossible in some LEAs until the child is really suffering!
Who does a Dx help the most?
Well the educational professionals!! Without a Dx the child is treated as NT. This causes disruption in the classroom, lowers self esteme and cooperation in pupils punished for things they cannot control. It can cause secondary behavioural problems that then need to be managed.
Parents need a Dx to get the understanding for their child. This is particularly acute once the child starts nursery/ school. Parents will often have met their childs needs as best they can - because that is what parents instinctively do - all very young children have quirky behaviour. Once at school that doesn't happen, and all sorts of difficulties can arise! A Dx is helpful in caring for our children who may need very different or specific parenting skills.
Medical professionals in our very traditional system usually do not commit until the child is mature enough to be utterly certain!

dustystar Mon 06-Oct-08 13:02:26

My ds has had a statement which provides him with fulltime 1:1 support at school for the past 4 years. This has been without doubt the most useful thing that has happened in relation to helping ds and also for us as a family. It provides him with all the expert support he needs at school and it has also served to remind us that he has SN and his difficulties are not our fault.

He only got a dx a few weeks ago. He has AS and ADHD and anxiety. We knew this before the dx but for us getting a dx was important for 3 reasons. Firstly as the others say, it is a sign post to others about ways to help and support him. Also we wanted to start talking to him about why he is different to his peers as he has become increasingly aware of this in the last year and has been very unhappy about it. We have recently been able to tell him that he has ADHD and AS and have read books with him to help him understand what this means. He is definitely happier knowing that there is a reason for his difficulties and that he is not the only one. Finally we are hoping that the dx will allow us to access some extra support.

Seuss Mon 06-Oct-08 13:20:42

For us the advantages have been:

Not feeling like a rubbish parent when ds is having a meltdown and people are staring - it has given me the confidence to glare back!

ds gets to go to really cool special school and access lots of activities he wouldn't be able to without dx (wouldn't cope with mainstream activities).

Before his diagnosis he really struggled in mainstream school, even though they gave him 1:1, because they weren't sure what they were dealing with and so even simple strategies that could of helped (visual timetables, home-school books) weren't in place.

Widemouthfrog Mon 06-Oct-08 13:33:10

The professionals were useful to us in that they provided a ASD diagnosis. Further than that their input has been completely absent. We deal with our son the way we have learned to over years of trial and error. Diagnosis has enabled us to understand why, and reinforced our management strategies, but actually I think we got most of the way on our own anyway

Very little has changed at school. We got a statement and 1:1 pre-diagnosis, so really diagnosis was just a formality. To be fair, though I think we had a very understanding school who recognised an ASD anyway, and embraced my sons difficulties with an open mind - this is not the case for many (or even the majority).

The benefit that we have seen with diagnosis is, as others have said, it acts as a signpost. It can pre-empt difficulties if you can use a 'label' as a shorthand warning that my DS is different. Of course there is also the drawback as unfortunately there are always sections of society that cannot and will not accept the diagnosis and there is always an element of prejudice and judgement.

Hope this helps

magso Mon 06-Oct-08 13:49:06

Forgot to mention that parents do not get support or training to parent their children with autism/ASD. (Voluntary organisations and charities provide some at cost once a Dx is in place if parents go looking for it). So the support given to teachers via the EP and ASD advisory units is often greater than a parent gets. So the Dx helps access that expertise for teaching staff.

MUM23ASD Mon 06-Oct-08 20:44:29

magso- so right!!!

You think once you get a dx that the 'support floodgates' will be opened...and the magic wand will appear!!!!

I was pleasantly suprised this time though- even though ds3 was my 3rd to be DX'd ...the SALT who did the diagnostic screening, did give me some NAS 'Help' leaflets- with details of seminars that i did not realise I could go to.

WedgiesMum Mon 06-Oct-08 21:20:05

Thanks for all these replies! I know occy will be thrilled. She's at college today (I think) and it will probably be later in the week when she gets to see the replies, so thought I'd just say thanks on her behalf until she can get to her pc.

She has obviously been through the whole dx thing with me and has been brilliant with suggestions for getting help at school so can reassure everyone that this will only do good grin

MannyMoeAndJack Mon 06-Oct-08 21:28:34

A formal ASD dx is important for parents for many reasons because it:

1) gives confirmation that their child is different and that it is not due to poor parenting
2) helps gain the child a Statement and entry to a special school if it is necessary
3) facilitates the process of qualifying for DLA
4) enables other parents and children to understand why their child is different
5) (should) make dealing with SS easier

I also think a formal ASD dx is useful to professionals because it gives educators a handle on how to deal with autistic children, i.e. without a dx, a teacher may think a child is just naughty.

From personal experience, an ASD dx can be unsatisfying; although my ds is non-verbal, he has no routines, no rituals, no obsessions, no special interests, doesn't mind (or notice) change and is very adaptable. My ds's profile means that just about everything I read about autism doesn't apply to him! I think it's good that my ds has the dx (for the reasons listed above) but I would say that it is as helpful to the professionals who deal with him as it is to us, his parents.

occy Mon 06-Oct-08 22:36:28

Thanks so much for all your responses. It's really useful to get extra views and input from you all.

cory Mon 06-Oct-08 22:47:53

Haven't got a child with ASD, but I know one great advantage for friends' dd was that she no longer got blamed or punished at school for behaviour she could not help.

IME there is no way most headteachers are going to accept autistic/Asperger type behaviour unless you can wave a piece of paper marked DX at them. Otherwise they'll put it down to your poor parenting.

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