nhs assessment for ASD ?

[Blue-Kat]

hi all

I would be most grateful for any advise or pointers. sorry this rather long, it's all been festering for a very long time !

 

My 9.5 yr old son L had a private assessment earlier this year, and they said he has aspects of Aspergers/ADHD/PDD and severe dyslexia. aspects of all, but not the full set of symptoms of one. They said his main diagnosis may become more apparent over time. It was a snap-shot assessment rather than thorough investigation.

 

We feel that the rather vague diganosis doesn't really help.L needs to know, because he feel such an outsider.

 

At bad times, as parents we feel out of our depth. L doesn't know why he has angry and violent episodes. At times his anger turns inward and he hits himself.

 

We are wondering about asking the GP for a referral for an NHS assessment. But have been told that it could be long process and that local assessors might not have the skills to diagnose him, and could end up with a similar inconclusive dx, or no dx at all.

 

We've suspected for years that L has an ASD, but things are only getting worse for the waiting.

 

any tips on how to proceed would be great

 

should I draw up a list of L's symptoms/behaviour for the GP? ( problems with socialising, communicating. obsessive, determined, fixed thinking, clumsy, bouncing, frustration, lots of sensory issues....)

 

we won't get any help from the LEA because L is home educated.

is there any help at all out there, or we all alone with this?

 

I'm also wondering about applying for DLA for him, as he's got older he's required more supervision/guidance 24/7. We can't leave him with anyone any longer, not even his teenage bro and sis.

 

thanks for listening

-

[Malika]

Hi

 

Even if it is a long process it may be worth asking for a NHS assesment could you possibly ask who would be the competent team to assess him.

I have notice recently that there are more DX of PDD I wonder if it a way to get away from too much request of support as it is a less severe DX.

Try as well to get in touch with the NAS they do provide a service for assesment but I think you need a letter from your GP or formal referal and probably lot of patience as you are unlikely to be alone.

 

Sorry but I do not have anymore advice hope things get better for you.

 

Malika.

[phasmid]

We chose the NHS route. I asked the GP I spoke to to send us to see a specialist. We were lucky as he had the sense to find, and refer us to, an ASD paeditrician. The diagnostic process was about 4 months long and was completed within 6 months of aoproaching the GP. The diagnostic procedure was very thorough. Going right back to even before Phas Jr was born, and then everything that had happened with him since then. Mentally it was a killer., but well worth doing.

 

I would recommend asking for an appointment with an ASD specialist, otherwise, as you say you may end up no further along than you are now. Good luck.

[Brook]

Hi,

 

I just wanted to say that, we were advised to apply for DLA by the lady who did our sons developmental assessment, this was well before his dx, the DLA is based on the extra 'care' and 'supervision' a child needs as opposed to other children the same age.

It would be worth applying now, we all know only too well that the forms are awful but, there is plenty of advice and info on here to help you through.

 

Good luck

 

Brook

[barefoot wend]

blue-kat

 

We found the name of a local NHS autism expert from the National Autistic Society and asked our GP for a referral.

 

As to DLA we were pretty late with this I found that the advice on how to fill out the forms by Mossgrove (you'll find it somewhere on this site) really useful - thankyou Mossgrove. Also I spoke to school SenCo and consultant and asked them to give further evidence.

 

Good luck

 

Barefoot

Edited October 13, 2005 by barefoot wend

[Blue-Kat]

many thanks for all the kind replies

 

lots to think about.

 

I have a disability too, as do my older 2 kids, so the prospect of lots of extra appointments is rather daunting. I can only do one thing a day, and not everyday.

 

I'd need to know the end result would be worthwhile.

-

[phasmid]

From my point of view it is vital to know whats wrong with you. I have sleep apnea. When it first manifested itself I was asleep 20 out of 24 hrs...and still felt tired. It cost me my job (ultimatley) and the usual take was I was either a secret drunk or lazy! No 'organic test' could pick it up (sound familiar?) and I was packed of to a psychatrist. It got to the point I jsut wanted to be able to shout "I have'xxxxxx' leave me alone!" So I can ampathise with his need to be able to name the difficulty.

 

It is impossible to say for sure what will happen or what the result will be if you go for a diagnosis. I would say that if he wants it you have to go for it. Mrs P and I also have our own disabilities and other children with problems but it has to be worth knowing. Ultimatley the choice is your and his. Whatever you do decide this forum will be here to help.

[Blue-Kat]

I've tried searching for the info Barefoot mentioned ( DLA advise from 'Mossgrove') but can't locate it.

any futher info to help me find it would be appreciated - thanks

 

we've made a start:

Appointment booked with GP to discuss things, I was wondering if I should go alone take our son, or maybe go with partner so he can take son out before he gets too frustrated.

 

also I've requested DLA forms. I've done DLA forms before, but not for ASD. I know that they often refuse by saying 'normal' kids would need same levels of supervision.

 

I not sure what is normal for a 9.5 yr old !!!!

 

regards

-

Katya

[phasmid]

I talked to GP alone. He had just seen phas jr and did agree when I put it to him that we thought he had AS that some of his behaviour was 'odd'.

[Fagsandbooze]

There's a saying "those who shout loudest....." well for me it's true.

It has taken me four years to get the dx. I know now that if I had demanded a dx years ago I would have got it.

It was a teacher from an autistic unit at a special school who gave me this advice and it definitley works.

Don't let everyone fob you off , demand answers!!!

Good luck <'>

[KarenT]

Hi Katya, I see you found your way here!

 

What's normal for 9.5 yo? I wasn't sure either for J at nearly 7, so compiled a list of grey areas and got my health visitor to go over them and tell me what was age-appropriate and what wasn't. This was for the DLA application btw. There aren't many openly available guidelines for milestones above school age, most being for tracking development in under-fives, but the HV was able to put my mind at rest about what J should be able to do and what was grossly out of whack with his age peers. Might be worth checking out the HV at that new GP surgery of yours.

 

K

x

[Blue-Kat]

hello Karen

thanks for telling me about this place

- good idea to ask the professionals what is normal, 'cos I don't have a clue.

 

I've got lots of questions:

is the 'normal' age for kids to go out alone?

e.g. to play, walk to school, go to local shop.

 

ditto when do NT kids start going to bed, washing etc. ALONE or with minimal supervision?

 

I just grateful that L now goes to his own room and doesn't co-sleep with us!

 

The DLA form has arrived already, what fun !

-

Katya

[nellie]

Katya.

 

There's a couple of DLA topics in Help and Advice, it's worth having a look, they have some useful information.

 

The following sites have DLA guides. Good luck!

 

http://www.bhas.org.uk/

 

http://www.cerebra.org.uk/

 

http://www.youreable.com/

 

Nellie xx