ASD diagnosis

[occy]

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!!

[electra]

My dd (nearly 7) has a diagnosis of autism (diagnosed when she was 3. We actively sought a diagnosis, because I felt that she clearly had autism and very significant special educational needs, and that I was not likely to be able to get the provision she would require without a diagnosis and detailed report which specified her needs and deficits.

[deeeja]

Both my 5 year old and 3 year old have autism
dxs. It was absolutely necessary for my 3 year old's statement, since it opened up the right type of support for him, and he now gets alot of intensive interaction/communication therapy and speech therapy support.
I have only just got the diagnosis for my 5 year old, and now I expect his IEP to change to reflect his diagnosis, since previously it was based more on behavioural/emotional type targets. I also hope it will help to get him a statement, because despite being very high functioning he finds it extremely difficult to cope with the school environment. He has some issues with speech, but this is hidden by his huge vocabulary, and is not noticeable to the average person, or the average teacher. He definately needs help, and I may end up paying privately for it, because there is simply not the provision in my area for him.
It has helped me to understand him, but I always knew my son ws not a 'naughty' boy. It does mean that professionals will now take his needs more seriously, and hopefully his gp will now understand. Also people will now stop blaming me, I hope...

[occy]

Thanks so much for your responses! It's great to get more insight into different people's opinions and also different experiences people have in different parts of the country. Thanks!

[mabanana]

Without a diagnosis ds would be absolutely sinking at school. Now he has tons of support (25 hours 1-1) the school chose his class's teacher especially with him in mind and he is happy and thriving.
Diagnosis is very painful though, and most paediatricians useless. Mine never gave us a jot of advice or help, apart from some suicidally depressing leaflets from the NAS which bore no relation to my lovely son, and still depress me now, and instead tried to make me see a social worker and go to parenting classes because when I was trying to listen to his diagnosis, ds, was playing up a bit (he has ASPERGERS FFS!) with his little sister (WHO WAS BARELY TWO FFS!). So if you mean are paediatricians helpful, absolutely not. Totally useless, except they are the gatekeepers of all the other help (DLA, statements, TAs in school, etc etc etc)

[tiredscot]

I have a 12 year old son who was only diagnosed with Aspergers when he was 10. I think all the professionals involved up until then, knew that he probably had it, but couldn't be bothered to find out! Having a diagnosis for my son has been a HUGE relief.

It explains (partly) why he dropped out of school 18 months ago and is the reason he is now being educated in a specialist residential school for boys with Aspergers.

Without a diagnosis, no educational help is forthcoming and without a diagnosis, parents are blamed for their children's problems.

[Niecie]

My son have a dx of AS and I wouldn't have said that his dx has been any help to me at all.

Maybe I am still burying my head in the sand but the consultant paediatric clinical psych. said he had social comms. problems but not badly enough to warrant a dx of AS. However, the review panel gave him his AS dx, despite none of them, except us as his parents and his SENCO from school, ever having met him! The OT wasn't there and I would say his symtoms are more dyspraxia related anyway.

When I speak to the OT, who is the only professional I met now, she just says labels don't matter. I am not sure if this means that she does or she doesn't think he has AS.

The only help the psychs gave us was a load of leaflets for the NAS and really the children they describe bear very little resemblence to my DS.

Thankfully, the school were giving DS some one to one time even before the dx and so the dx has made very little difference to them and he is getting the help he needs.

However, I can't help wondering if there is perhaps more we can be doing for his social comms skills but I have no way of knowing what is available as nobody seems to want to talk about that, just the very real and more pressing problems he has with his motor skills.

In answer to your question, no the dx was of no help to me as a parent but I suspect it was a great help to the psychs as it meant that they can close his file and not bother with him any more - not their problem. It was of very little help to the school as they were helping already and he was already on the SN register.

[bonkerz]

a dx for my son was crucial.
We have struggled for 2 years to get him support. All the schools recognised he had needs, the LEA on the otherhand said that despite these needs being recognised he didnt have a dx and therefore could not get these needs met!
What happened was schools could not cope and ended up excluding him. LEA kept on saying well yes bonkerz we understand he has these needs but he does not have a dx so we will support his needs at a very basic level. 2 years of fighting, 2 permanent exclusions and a pupil referral unit later lea decided he did need full time support but that MS was best place for him which it isnt!even with full time!!!!
LEA then say well he has to go MS cos he has no DX!!!!

All this time im also trying to get him assessed for ASD, being told by pead etc that they dont like to label children,
eventually after a year of constant assessments and referrals DS was dianosed with Atypical Autism, ODD, SPD and Anxiety!

RESULT LEA agreed to send DS to local special private school!
Home life also affected badly as could not access help from autism outreach till he had a dx ! SS said without DX they could not help! As soon as DX came we got respite help from SS and Autism Outreach have put me on a course to help me find new ways to help DS!!!!!!

I suppose what i am saying is a diagnosis in my area and in my sons case was the difference between sink or swim and in some ways a difference between life or death!!!!

[Xfactor]

Hi everyone! I am a Mumsnet virgin and this is my first msg. I have a 9 yr old son who has ASD - Asperger's Syndrome. We were very lucky that we were overseas when the school recognise the early signs at the age of 4. Was difficult to get a confirmed diagnosis because he was very young but when we got back here and got a second done at the age of 7 it was confirmed. He was at the borderline. Looked normal (well he is!) but there are some areas that needed some tweaking! I surfed the internet - bought lots of books about AS - read lots of articles and basically trying to understand what it is all about. Some people said it is not good to put label on children but in my personal opinion I would rather find out what is exactly wrong with him and then I am able to do something to help him. I do find the diagnosis very helpful and I do feel relieved to find out about it. The school does not feel that there is anything seriously wrong with him educationally that needed a Statement (very difficult to get one, btw) but he has a once a week group session with a teacher - focusing on the social behaviour, eg using eye contact, art of listening, and communicating in general. Sometimes I feel the school just 'don't want to know' and says "he's okay..he's allright". I try to get him joining After school clubs that involves playing in groups, and it seems to help with his condition. AS children always prefer to be on their own given the chance! It is always going to be an ongoing challenge for me to help him cope in this world which sometimes can seem very cruel to children and adult with the condition.

[Widemouthfrog]

Welcome to MN Xfactor. love the name. Some great post on here about AS.

[jimjamshaslefttheyurt]

My son is severely autistic. I began to seek a diagnosis when he was just short of 2 and I suspected autism. We were initially told that he 'definitely isn't autistic' and that 'any problems he has are very mild'.

He was eventually diagnosed with autism a year and a bit later aged 3 and now aged 9 is still non-verbal.

Not getting the diagnosis when we first started looking was actually quite devastating in some ways. Had we had the diagnosis at 2 we would have started some sort of early intervention (paid for by ourselves as there was nothing available locally). These interventions are expensive and we didn't do them because we'd been told it 'definitely' wasn't autism.

For another perspective I'm now a little involved with a new (15 hour a week) early intervention programme for pre-schoolers. Completely free, it is good intervention. However, the biggest problem it has is finding children. They're out there but not being picked up early enough.

[Sal49]

Yes i think a diagnosis is very valuable. For a start you cant get any help in either services of funding for any help without it.

I think its a way of the NHS saving money, the longer they delay the diagnosis then they dont have to give you anything.

Also without a diagnosis the parents are left in limbo not knowing what to do and have no coping strategies at all. This will take its toll on any family as they struggle to cope.

I am a member of www.treatingautism.co.uk and there is so much useful advice on there. Also they are holding a conference in March 09 with great speakers from the UK and USA who actually treat these children instead of just medicating them.

Hope this is useful cyber hugs to you

Sal x