Assessment this month

The paediatrician also said that they no longer diagnose Asperger's Syndrome or HFA, it is all classed as Autistic Spectrum Disorder now.  No idea if that is just here or everywhere, or if it will make any difference.

All the waiting is so frustrating isn't it?  I would make sure they have requested everything that they need though as most of the waiting we have had has been because the paediatrician asked for a speech and language assessment, then waited weeks for it to be done, then requested the school to do some observations, then waied weeks for it to be done, then requested an occupational therapist to see him, etc, etc.  If it had all been requested at the start he could have been on all the waiting lists at the same time.

We finally had our 'diagnosis appointment' last week.  After 10 months of assessments and reports and observations we turned up to find that not only was his paediatrician on holiday so we saw someone new, but they also didn't have any of his notes or reports so couldn't do anything!  We now have to wait for yet another appointment.  It's so frustrating I could scream.  It wouldn't be so bad if it was just to know for definite, but he needs a referral to CAMHS and a sleep clinic, which they won't do until he has an official diagnosis. Aaarrrgggghh!

If I had to deal with a GP like that, I would give her a piece of my mind, but I appreciate that this is not always advisable. However, you could tactfully raise the Autism Act - you have a right to an assessment and the GP has to refer you to the right person. If this GP is still hellbent on being so ignorant, then I think you have the right to request that you change GPs.

It is just a long, complicated, send-you-round in circles process!  (And send you mad process)

Here we go........long story........

Originally I went to my GP with concerns over Leah's behaviour, she referred Leah to CAMHS and was subsequently turned down for this referral as they considered it 'wasn't a mental health issue'.

I was contacted by my local authority who recommended a CAF, so I went to the school to ask them to set up a CAF.  After filling out the forms for a pre-CAF assessment I researched and became more convinced that Aspergers was the most likely thing going on with Leah. 

So off I go for another meeting at the school with Leahs 'Nuture Group' teachers and the SENCO.  The result of this meeting was they said that a CAF was no longer required and Leah needed an assessment for ASD by a Paediatrician and that the only way to get a referral for an assessment was via my GP.

So today I have spoken with the GP and she is SO domineering, won't listen at all.  She said a referral is already in place, I tried to tell her that a CAF isn't what's required, but no, as far as she was concerned she'd done her bit, end of conversation.

I ring the Local Authority to find out what kind of referral had been made and it WAS for a CAF.  The very nice gentleman there sympathised but said I have to go back to the GP as only a GP can make a referral!

Back to the GP, tried to get the receptionist to put me through to a different Dr, but no, the other GP said I would have to talk to the doctor who had been dealing with it already.

So, on the phone again to the Dr and basically she said the school has to do a CAF! She went on to say a 'label' isn't necessary and that it can be used as a 'crutch' or as an excuse.  Inferring that chasing for a diagnosis isn't necessary, but you can bet your sweet life if it was HER daughter she would be doing everything in her power to get a diagnosis and the subsequent support for her daughter.

If Leah doesn't get a diagnosis of Aspergers I would be surprised, but fine about it, as long as she continues to get support in school.  At the end of the day all we want is the best for our children, not to be pushed from pillar to post.  End of rant.

So I'm back to square one!

Sorry this is so long and complicated!

Just aaaaaaaaaarrrgh! So frustrated!

Wow! I didn't realise this could potentially be such a long process! There's me naively thinking.......referral from GP to Paediatrician, a week or so....... assessment by paediatrician (gather facts from school, then appointment to discuss details) a couple of weeks........bit too optimistic maybe? Hahaha! I guess I shouldn't be so impatient!

Is your next appointment with the paediatrician? 

I wonder if there is a different time-scale in different local authorities?  Or perhaps it's just a process that takes a long time for everyone.

Hi, it's good to find people going through the same things.  My 7 year old is currently being assessed.  Our first visit to the doctor was in October last year for referral to the paediatrician and there have been questionnaires for school to fill in and observations at school and a speech and language therapist report done..... and still no idea what's going on.

We're pretty sure that he has Asperger's but the next appointment is still 6 weeks away and we have still got no diagnosis and no help.  It's such a frustrating process.  School said all the right things and listed all the things they will do to help him - but haven't actually done any of them yet!

It has been a very long 9 months.

Hi Candy,

Thanks for the update, it's great to hear that the appointment went so well, also good to know what kind of thing might happen when we get to that stage in the process.

I actually found a form online that gives guidence to paediatricians about ASD referrals and another form listing the questions for a health professional to ask a parent/caregiver about the child with suspected ASD, and yes, there were lots!  Amazing what information you can find, the internet is a wonderful tool for research!

I've typed up and printed out a long list of my daughters 'symptoms', for want of a better word, so that I can go armed with this information.  I'm hoping this whole process doesn't take too long, just to get the diagnosis, or not, and move on will be a relief.

Hi Kerry,

It's so hard at the moment as I don't know anyone who has been or is in a similar situation so everything I am learning is from the Internet.

We have already been to the GP who has refered us to the specialist which is the apointment this month. The SENCO at my son's school gave me a list of key words to use at the GP's but to be honest he was on a bad day anyway so she could see for herself. 

I will start keeping a diary with his behaviour and quirks, then I won't forget anything that could be important for the appointment

My son finds it difficult to look to the future, so changing class won't be an issue until September. It took him about 4 months to settle into Y1 though and every morning he would tell me he hated Y1 and wanted to go back to Foundation so I am expecting something similar when he moves. At least he will have had the assessment by the time he goes back so things can be put in place to help him adapt.

Good luck with your GP

Hello Layla,

I will be following any replies you get with interest as I am on the same route as you!  My daughter is 9 and, like you, myself and her teachers believe she has Aspergers.  I saw the SENCO at school today for a brief meeting to ask where I go from here and she told me that I have to see my GP for a referral to a paediatrician.  So that's my next step, also like you, I don't know how much information the GP or paediatrician needs.  According to the SENCO they will gather a lot of the information they need from the school, but there are obviously different behaviours at school than there are at home.

Perhaps you should write down anything in your son's behaviour that you can think would point to his Aspergers?  I will be doing the same in the hope that this is what they require.

Afterwards?.......I suppose you wait to get an official diagnosis, one would assume in writing.

How is your son about changing class and teacher?  I know Leah is feeling nervous and scared, they are helping her with the transition to her new class and new teacher, so hopefully she'll feel a little more prepared.

Good luck with it all, Kerry.