Diagnosis

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We are in England.

My son's nursery suspected an ASD when he was three and so he was referred to a paediatrician. There was a 4-month wait for the appointment so we went private (our health insurance does not cover this kind of thing) and saw a private paediatrician within a fortnight. I was thinking that he would talk to us about our concerns and then refer us to some kind of neuro specialist who would assess my son but he just blurted out a diagnosis (mild aspie) after I had been talking to him for 35 minutes about my son and my son was in the room and we then received a very rough report based on the 35 minute conversation that we had. I just thought, that's ok. That's all I want right now to help me come to terms with it before I have the NHS appointment where we can get a full assessment of my son and a detailed report.

So then, 3 months later we went to see the NHS paediatrician. I told her that we had a rough diagnosis for my son which we had been given after 35 minutes. I said that, obviously, I wanted her to assess my son herself. She said that she would not because we had a diagnosis. I was confused because, I know it's sometimes very easy to spot when you know about these things but I wanted a full detailed evaluation or whatever you call it.

So anyway, I come across a professor who can give a state of the art diagnosis and he tells me to ask my paediatrician to refer my son to him so that he can do it for us (you can't make an appointment for anything without a referral). My NHS paediatrician has refused because she says that we have a diagnosis. I am so furious. All of this has taken nearly 2 years and I have repeatedly asked her for a proper assessment for my son and have not had one. Am I mad? Please tell me. My son has an aide with him at school every second of the day. Life is often very complicated for all of us. I have 3 boys of 5 and under and I get tired like you wouldn't believe. I find it so hard to believe that I constantly have to take time out from looking after my other 2 sons to beg for the basics for 2 years and still don't get them. This is how it feels to me:-

DOCTOR: I am awfully sorry Mrs Smith but your child has cancer

MRS SMITH: Dear god. Cancer of the what?

DOCTOR: Search me

MRS SMITH: And how advanced is it?

DOCTOR: Oh (wrinkles her nose - looks like we've got a real princess here!) I wouldn't worry your pretty little head about it.

MRS SMITH: Well what treatment should we go for?

DOCTOR: I don't know - make sure she eats as much salad as you can.

MRS SMITH: Can you refer her to an oncologist please

DOCTOR: No (this woman is the limit). You have a diagnosis. Goodbye.

In the US you do not need a referral. You just need a stack of money because
big brother does not pretend to provide medical care for the workers. Part of
how I guess your system cuts cost is by providing little help to ASD kids so old
people can get hip replacements. I think in 10 years I have been to a doctor one
time here in the US (because I cut a tendon in my finger) I could not pay to
have it fixed ($5000+) I got the $100 1 stich and no anti-biotics hope for the best
fixer upper medical care. If I need medicine I order it off the net. Basically it sucks
every where without alot of money.

nomoreality

I think we have a similar situation in Australia, except if you want a referral you get one, well I always do. There is no reason to withhold a referral.

So since you know which doctor you want to see, can you get a referral from a regular GP? One that knows you well and will listen to you without making assumptions?

And if this fails, perhaps you could ask your professor doctor that you want to see, if he can recommend someone to make the referral, and he will recommend one of his mates who will do the right thing by everyone.

Your NHS paed should be able to write a referral so your son can get treatment from the expert - you're no longer looking for a diagnosis exactly but more like a management /training/treatment program. If she can't give you the program, she should refer you. Maybe you just asked "wrong". Since half the time these people only produce what you need if you state your requirements exactly right. However, after the way things have gone, I'd be avoiding her.

with my HMO, here in the states, i need a referral to breathe....insurance didn't pay for the inaccurate psychological report about my son.obviously, i wanted a report that i felt reflected his abilities and disabilities more accurately~we paid out of pocket again for a neuropsych. the neuropsych was definitely worth the $. don't know what to tell you to do next.....is there someone within the educational system that could help you ? whta about an advocate ? how about a lawyer ?

yeah i am aspie and in th euk an dhave a 4 yo aspie son
once you have a diagnosis in the uk no one wants to know you or help you.
it is a developmental abnormality and onve diagnosed then thats it, you haveit.
why asses something that is allready created?
this is theiur attitude.
my sone needs to have a diagnosis to get halp at school and here in northern ireland the waiting list is long so i have to go private and it costs £1000 and the schools still wont accept an iep without an nhs referral so you are going around in circles here. it is the crisis that he nhs is in.
im sorry you have found thios out too but there is nothing you can do except learn as much as you can yourself and teach your son social skills and copng stratehies..the uk is asoei unfriend;y, not a critiscism just an onservation.........message me if you wantr advice or help

Thanks for your advice everyone.

I asked my son's paediatrician nearly 2 years ago to assess him and she said no - he has a diagnosis. I said that this was a very rough ball park one which took all of 35 minutes. She refused to do her own one. So I asked for an assessment by her local psychologists nearly 2 years ago. They said that they are not specialised enough and that they were too busy with self-harmers, abuse victims etc anyway. So, In January this year, I asked my paediatrician to refer to the professor. She said only GPs can do this (which was a lie). So I asked my GP. He did one in February. It got lost so he did one again in May which also got lost. When I rang his new secretary in July she said that she thinks her predecessors probably just threw it in the bin because they dont take referrals from GPs. So I asked the paediatrician and she said no. She said I could pay someone to do it for me.

I know I could but I really don't think I should have to. After all, she is supposed to be his paediatrician and she can't be bothered to do this for him. The catch is that the professor is NHS only so I have to have a referral. I will change paediatricians (which is going to take a lot of hassle - it just makes me so ******* cross because there is enough to do without having to play games).

Totally right - it is a place where money can be saved.

nomorereality

It wouldn't hurt to explain the problem to the professor, and get him to recommend the right person for the referal or you may waste a lot of time when the whole cycle repeats itself.

You might have to leave a message with the receptionist for him to call you - make sure the message includes that you have spoken to him personally and he said to come see him but you're having trouble getting the referral (please help).

I can't believe they'd binned all the previous referrals without calling you. Did you put a return to sender on the back of the envelope or contact details? In Australia, the patient gets the referral notice (in a sealed envelope) and is responsible for making sure the new doctor gets it. I have been known to open the sealed envelope but this didn't get me into any trouble.

Thanks for that advice. I will do that.

Here, the GP sends a referral letter direct and the patient doesn't get anywhere near it.

I had to ask because I am so tired and cross right now I couldn't think clearly.

I have to say that in some ways, I can see the problem here. Why expect the N.H.S to step in after having been treated privately? .

Where I live (in Scotland) we currently have a 2 year waiting list from the time of referral to the first diagnostic assessment. It's not great but I personally resigned myself to it and got pro-active whilst waiting (my son was diagnosed with AS last week after 6 years of problems). During the time we were on the waiting list I got an I.E.P drawn up for him, an auxilliary helper for him at school, Disability Living Allowance for him, and I went myself to a conference on Autism/Aspergers and relayed the info to the school, along with anything else I could find for them.

YOU have to be pro-active, even if you get this NHS referral (and I hope you get it soon, change your doctor and keep pushing) it doesn't really change much - except give you and your son some leverage with the school/authorities. You will still have to mastermind any small change you want for your child, that's life in the U.K but it's a Hell of a lot better than in some parts of the World where having Aspergers wouldn't even bear any significance compared to the greater problems in life.

We all have to be responsible for our own health and well-being, and for that of our family members. Resources are stretched but at least we have them in place - you just have to play the game until you get the result that you want! .

this i sgood advice ..fat bastard.....w are all responsible for our own ills and hassles, and as stressfull as dealing with the nhs and aspergers kids is..sometimes this eed to bepointed out to us.

you go to asoie conferences?
are there ones in scotland?
im in northern ireland and i dont go to any.
where are they?

Hi Donkey!

I learnt about the conference in Aviemore via my local Autism support group. I no longer attend because I didn't find it brilliantly helpful and it's not really my scene, drinking tea, eating biscuits, and talking *endlessly* about our children! .

It is stressful having children with special requirements - but there again it's stressful having children, period! . In my own opinion, once you have the diagnosis it's your responsibility to learn all you can about the condition in question, in order to help your family have the most harmonious life possible. Once you realise why your kids are doing things, that's half the battle won!.

Maybe I'm wrong, but to me, it's clear - you either stay in the NHS system, or you go private - if you go private, why should the NHS then waste their time and resources on re-diagnosing someone who already has a diagnosis?. People have to wait their turn here - simple!. You don't NEED a diagnosis to get help/help your child, but you do need the will to go out there and find out as much as you can - become an expert in your field! .

I have 'issues' myself - I was a VERY difficult child. I'm still difficult - I am intelligent but I don't know how to channel it. I've been in every kind of trouble imaginable but now I'm married and have settled down - to some extent!. I'll never be part of the herd, though, so I understand my son 100%. If my mother had taken some time to try and understand me as a child my family would have been a lot happier, it's that simple! .

I f****d up many times when my son was little, I didn't know what his 'problem' was, and I listened TOO much to other people's 'advice' instead of following my instincts. I really regret that now, but it's never too late to put things right. I was so relieved to discover that my son has AS as I blamed myself in the past for his troubles. However, I refuse to feel angry that we didn't get help earlier - that's just the way life happens sometimes - s**t happens! .

When I read here that Americans have to pay thousands of $$$$$$$$$ for assessments for their kids, I thank God for the NHS .

sorry guys, posted ^ as my son Cybersam, but i am REALLY Tubbychef!
(sharing P.C)

finally logged out my son and logged myself in

Just wanted to say - if you think it's hard having a child with Aspergers, try having a child with Aspergers who is VEGAN!!

Now don't get me wrong - I'm a Vegan too so it's great, but at school - whoa! - they cannot handle it!!. You would not believe the problems it causes with cookery lessons, etc! . I keep having to complain, too, about comments made by staff re his diet (e.g 'Ham and Eggs are good for you' - 'You need fish oils', etc, etc!! ).

my aspie son is veggie, but not vegan....

cyber sam you dont look anything like your father?

all sort sof trouble you say?

yeah we all been there bro.

aspie kids are great remeber this when you forget eerything else.

Ha-ha Donkey, I'm Cybersam's mum not his dad!! .

Yep, I've tried most things and ended up in trouble, but much of it I can't regret, better that than being boring! .

Yes, I love Aspie kids, don't know what I would have done with some football-mad little trendsetter, or a little princess!! . There is history of Alcoholism, OCD, and Depression in both mine and my husband's families, so a 'normal' child would have been unexpected!! ! .