Constant Dr referrals - going round in circles!

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Hi, Im in the UK and have a 5 year old daughter who I feel has many signs of an ASD, we were almost there on a diagnosis but have just had yet another set back. We end up seeing different Drs every time and have to go over every detail again despite it being written down from the last Dr, its months between each appointment and we are just referred to some one else who then refers us back and so it goes on. I have to chase up each appointment because nothing seems to happen if I dont. Write ups of appointments always have mistakes in them where they have mis-understood me or just seem to be making it up! Her last school should have sent some info back to the Drs, its been months and the Drs have not chased that up, DD5 has now left that school so it may not be wise to continue with them, however the new school has not yet received anything from the Dr.

DD5 was given a verbal diagnosis a few months back, yet she was referred back to the original Dr again and not onto the next step of diagnosis. Then because the original Dr was temporary it was a new Dr we saw today who has completely dismissed ASD, how can 2 Drs in the same building with the same notes, viewing the same child be so different! I am so sure this behaviour is not normal and her stress levels are not normal for a 5yo.

I feel totally frustrated and Im starting to think Im barking up the wrong tree here, my inlaws have all but disowned me due to this as they think its all down to my parenting and now this with the Drs makes me think its all in my head Its driving me mad!

How long does a diagnosis take in general and how helpful were the Drs in your cases? Just want to get an idea of the process as this seems to be getting ridiculous. Heres our process so far:

DD5s behaviour has always been unusual but was becoming too much for me to cope with at the age of 2 or 3.
Saw the GP with regards to behaviour problems aged 3, GP advised "We cant dx autism until they are 7", even though I never mentioned ASD.
Spoke to the school (DD then 4) who said speak to school nurse who advised DD should still be under health visitor as she was only in nursery class.
Spoke to health visitor, several visits later she referred us to the Child Development Centre who referred us to the Child and Adolescent Mental Health Service who gave as good as a dx but only verbally. They then referred us back to the Child Development Centre for formal dx. Just had an appointment there (DD now 5) with a different Dr who did not listen at all, cut the appointment short by half an hour and talked over me. He was very patronising and I felt thoroughly fobbed off.

I just dont know what to think anymore, I feel like I should give up, like Im fighting for something that isnt there. But then the minute we got out of the Drs DD5s behaviour started up again, the rest of the day which was spent doing nice things with her and family was ruined by her behaviour. She is able to hold in her stimming and hyperactivity for a some time for axample at school she seems ok, but as soon as shes out of the classroom and back in my care I get a whole days worth of bahaviours.

I just dont know what to do now. Any advise or personal experiences would be appreciated

Granted, I'm in the US - so the system here works differently, but if it makes you feel better, we started looking for help for my son when he was 3 and didn't actually get a diagnosis that came with a plan of action until he was 9. Keep at it - you are the expert in your child's behavior.

DS's school also made us feel like they thought we were the problem. Let me tell you, nothing feels as good as the day when you finally get the support your child needs and it makes a difference - you feel so much better! I'm pretty ticked-off at our school for dragging their feet like your doctors, but eventually we did get what DS needed. (they gave us the correct diagnosis at age 7, but didn't tell us what to do with it or how to get help!)

Wow in for the long haul then! Thanks for the reply, just an idea of how long it could take helps even though your are in the US so it may vary. I really feel like giving up right now, I keep thinking what if Im wrong

I think I will keep pushing and request a second opinion, well more like a fourth opinion!

Nope, don't give up. This is one common theme here.

I'd also try contacting your local autism society and see if they have any recommendations to make the process go more smoothly. It always helps to have someone on your side who knows how the system works.

Thanks, I have been along to a group but without an official dx they skirt around giving advice and Im not entitled to join any of the courses or events they have on offer. It seems a dx is the key to a lot of help, support and info but without it Im stuck outside looking in! I have seen that there is a drop in centre on occasions, I might pop in there and see if they can recommend a particular Dr. Its all so frustrating, grrr

You are right, it is incredibly frustrating! I am so sorry, hang in there - and going to ask for a recommendation sounds like a good step to take.

Hello
Im also in the UK. My son hasn't had a diagnoses as yet either and we feel like we are going round in circles too ( we have been so close to giving up also)
My son is only 4 but we have known he is "unique" since day 1.. We have been seeking help since he was 2 and so it has been a long 2 years.. The nursery where he goes have never really shown that much concern so that has really slowed us down, the educational physcologist who went to assess him at the nursery also didnt have many concerns (she was there about 30 mins while he was doing a very structured activity) so that annoyed us greatly. We felt that the nursery took things personally, like we were trying to fault the staff for the way my son is, or why they hadnt noticed anything. Although certain members of staff have spoke to me about certain behaviours he shows there. We do have a family support worker who visits us regularly and she has seen what we see in our son, she is fantastic and has pushed things for us a great deal. She is employed by surestart, so if you have a surestart near you it would be worth getting intouch with them. We are currently waiting another assesment for the educational physcologist, so I hope this time they will assess him for longer...
I would keep pushing, demand to see the same doctor, or an educational physcologist (as they have the power to diagnose). Please dont give up, you will get the help you need, and hopefully we will too as I am determand not to give up anymore. We know our children better than anyone else out there, always keep that in mind.
Good Luck

Our diagnosis went quickly once we were referred to the school district at 4 (US here, so different system) Based on my reading here, it seems that if your kid is severe enough and obviously different relative to the kids his/her age it goes much quicker. Everyone else seems to get the run around, no matter how clear cut. If your child is well behaved, they also blow things off. When behavior is a problem to them that is when it is easy. If my son didn't have behavioral issues up the wazoo, I am sure that is how it would be with us, too. They don't seem to help much unless it effects them.

I'm in Scotland. We haven't been through anything like what you've been through, although I've heard some horror stories. My daughter was slightly older before being identified as needing to be assessed, so the process was initiated via the school.

Here's the process we went through:
Around Nov 2010, I spoke to depute head regarding my concerns and a referral was made to speech & language therapy (SALT)
Some time in 2011, we had the SALT triage appointment, where a referral was made for autism assessment and a full SALT assessment
May/June 2012 SALT assessment (several sessions)
August 2012 autism assessment and diagnosis (3 appointments)

It was really straight forward and, although it took close to 2 years to go through the process, it was a year quicker than we had been told it would be.

My son is 3 and has an obvious communication delay and was described as "busy" so the school district gave us everything we asked for. I am also in the US. Sometimes I am confused about the benefits of having a formal diagnosis since the school district gave us what we wanted, so far. I guess the challenge comes when he is school aged (5+).

We're also in the UK, and my eldest who is now 11, saw the Educational Psychologist at school 3 years ago. They don't have the power to diagnose, unless things have changed. We had a meeting and I thought it was an assessment, after the meeting we got a report and it was titled a 'consultation'. The covering letter was non-committal and basically said that although they didn't see the signs this was not conclusive either way and if I wanted her to be assessed to let them know so she could get referred onwards. I take that to mean the Ed Pysch can't diagnose themselves. It takes a multi-disciplinary team to diagnose a child, although perhaps the Ed Psych might be part of that team.

You haven't said what type of doctors your daughter has been seeing (unless I've missed it somewhere), are they ASD specialists?

It would normally take a multi-disciplinary team in the NHS to diagnose, so it doesn't sound as if they have sent you down the right path yet.

One thing I would say, is any report that they send with mistakes I would reply with the correct information pointing out their mistakes. Otherwise it will be on record and you might not be able to refute it later on.

I would also chase them up in writing and ask for a categorical statement on your daughter's assessment status, point out the to-ing and fro-ing you've posted about here and insist that they follow the NICE guidelines on the pathway to diagnosis (I'm hoping they apply to children not just adults).

It's sadly he who shouts loudest that get results most of the time. Either way you may still face a battle, but being proactive will hopefully give you some control over the situation and make them get their finger out.

Ive realised they havent said what type of Drs we they are! :/ They havent really explained who is who and the whole system seems confused, nobody seems to know who can diagnose and which department does what. I have a Parent Support Worker, and we have been seen by an Associate Specialist in Community Paediatrics and a Community Mental Health Nurse. Not sure what the last Dr was as his accent was difficult to understand and he pretty much talked over me the whole time.

I have corrected their mistakes over the phone also, but not sure how much attention they have paid to that!

Thanks for all your replies, I have been chasing it up all day and the support worker is also on the case. Spoke to DD5s teacher and she is ready and waiting for the letter from the Dr requesting info from them. I think things may be back on track and I will have to just keep pushing. Its just hard when you start to think its all in your head, not made easier by my inlaws who are in denial about it and make me feel like that aswell as the Drs!

Good luck with it. I know what you mean about the denial, my husband has been the same.

Mine was too but he is now on my side which is a huge weight off my shoulders, the rest of his family dont matter so much

I've been told that they have a lot of power and can diagnose, maybe I was told the wrong information. I'm so confused at what path to go down next, I was just hanging around waiting for the Ed Psych, is there anything I should do in the mean time.?