am nearing the end of my tether, I am near giving up, about what GP has said to DH today I really need to talk (again, what a PITA I am!)

[hereidrawtheline]

So sorry to keep banging on to you lot but I am really just nearing desperation and I need to talk to you.

DH had an appointment with our GP today, he took DS with him as I needed a break. I actually feel a like giving up right now. I am just exhausted to the core of me.

DH's appointment was not relating to DS's DX but DS was there with him. GP did the necessary stuff WRT what DH was there for then turned the conversation to DS and the letter I recently wrote to him asking him to fast track us to see a pead etc

GP was irate and outraged that the private specialist "diagnosed" DS without seeing him, I know this is controversial, but we have always said it was not a proper DX, the specialist said the same thing. She said in her opinion "DS will definitely be on the spectrum" and that is all we have ever relayed to the GP. Bear in mind the whole reason we resorted to the private doctor is that they have lost our referral so many times and fucked us about and ignored us for ages.

Anyway GP was ranting at DH about the whole thing saying the private doctor has led us up the garden path and she should be struck off etc. He just said "I am looking at DS right now and he looks perfectly normal to me" and DH said "yes but he is different all the time and other times it is extremely different" and GP said "if it is different all the time then it is not autism, it is just behavioural problems" (which makes me feel like complete and utter shit as I really feel the undertone to all of this is that I am not doing things properly and DS is spoiled. And it just isnt the case.

I am banging my head up against a wall here and I feel every single thing is stacked up against me. I had PND - there you go - instant invalidation. Who cares I have been recovered for ages who cares how many other mothers have it, I am a nutter. I am so sick of living in this stupid fucking village where everyone is perfect and everyone knows everyone else's business and I am always wrong wrong wrong. I hate it. I want out.

Maybe GP and HV are right. Maybe there is nothing wrong with DS that time out and tough love wouldnt fix. Maybe I am too soft on him. Maybe this is all my fault and I am the root of all of it. Maybe I should just give up right now trying to get a DX of anything at all, and just handle it all myself in the privacy of my own home. Maybe I should exit the system totally. I must be mad. Maybe this is all my fault. What if all his things are indeed normal and it is me who is the problem. I dont fucking know do I he is the only child I have. I do know I am shit tired from repeating every sentence and ritual 100 times a day. I do know he spent 6 hours in the middle of the night a couple of weeks ago in meltdown and I dont know why. I do know he has sensory problems. I do know he asks me to explain everything to him a dozen times in a row. I dont know. Jesus I have never been so close to throwing the towel in. Maybe I am really wrong.

I need your help and perspective please, if you honestly thing I should let it go and assume DS is perfectly normal just high maintenance please tell me and just put me out of my misery. Thank you and so sorry.

anon I am in North Essex. I really will be ok. The worst of all my anxiety and stress is definitely what is shown here on MN because its the safe place for me to vent it all out. In my RL world I have to keep a very confident, brave, happy demeanour, and be super productive as much as possible so I am sorry you all get the shit unleashed on you. I will be fine. I am hoping & praying the pead dr does indeed return my call tomorrow and she and I get on alright, if I get a good vibe off her & she actually communicates with me then I will relax such a huge amount as I wont feel so isolated amongst the medical people.

notfromaroundhere - I am appalled at that comment in the letter from your GP - but I can strongly relate to it. When I had PND I was waiting for ages for my GP to refer me on to homestart, counselling or some such and nothing was happening, I wasnt getting any help or support, I am not from this country so havent got Mum, sister, best friend around to help out so really I was very depressed, DH is brilliant but was at work full time and he doesnt have family around here either although he is English - plus DS was prem and we had a horrific labour which didnt help - anyway I called the GP to chase the referral (for me) when DS was about 3 months old and I said I was so stressed I just didnt want to be alone with DS anymore because I was going out of my mind alone all day with a screaming poorly baby. That was it. That was what I said. Probably not perfectly phrased but not earth shattering either. Next thing you know GP wrote a letter saying I was a danger to DS and she recommended I go in a psychiatric unit - without him. That was it. It went from PND and needing some prozac and a friendly voice to speak to - to me being in a bloody psychiatric unit without my DS who you could not have paid me to leave.

And I hasten to add that I was NEVER a danger to him! I literally could not hurt him in any way he is my heart, I love him so much it is the most wonderful thing ever. She just chooses to constantly think the worst of me and not listen or help until I am desperate. I wrote her a letter at the time objecting to her reaction to what I said, and also the fact that she had been ignoring me up until that point then made such a drastic solution. She didnt even do me the courtesy to respond to the letter and it has never been mentioned again.

As it happens I was put on prozac and given some counselling and I fully recovered by the time DS was 8 months old and have not been down at all since besides normal stress and what I have discussed here on the SN board.

And just so I make sense I am talking about a "her" and "he" GP - it is a practise, they are partners. The woman is the worst doctor I have ever had the misfortune to meet and pretty much everyone in the village is irate she is still allowed to practise medicine - I mean people have actually said she could be a future Shipman in different circumstances, she is truly awful. But the man is not so bad, although he is the one who was so angry today he is usually ok but he has good days and bad days so it is still walking on eggshells. We refuse to see the woman GP now unless it is an absolute emergency and she is the only one available because I am actually a little afraid of her lack of interest, I am afraid she will get something very wrong, as she recently did with me, completely missing that I had pneumonia (was taken into A&E by ambulance that night as I couldnt breathe - earlier in the day she said it was just a minor chest infection)

just going to bed now. thanks for your support. I am sure tomorrow will be much brighter & I will be in a more resilient mood!

Thats what this board is for, for you to offload. I think we all put on a brave face in RL even when the stress of the worry of our kids makes us feel shit.

It is a bloody nightmare, you need someone to listen & work with you during what is a stressfull time & it must be so hard if the people who have the power (them DR's) are pulling in opposite directions.

I'm in Suffolk so not a million miles away, if ever you fancy a moan over lunch just give me a shout.

I can only reiterate what others have said -it's them not you who are in the wrong. How the hell can a GP say a child isn't on the spectrum because he 'looks fine'?!

I have had similar comments along the line -my dd is still going through her dx- and I get so infuriated.

I really feel for you, because the last thing you need when you are exhausted and stressed is some ill-informed 'professional' making you doubt yourself.I think we are good enough at beating ourselves up -we don't need other people to do it too.

Please do email 2shoes about Time To Rant, you will find some wonderful support there. Keep your chin up - try not to let the buggers get you down.x

How weird I am in Essex too but not North. Must be something about small Essex villages that appeal to GP's of a certain mind-set. It must have been a dreadful experience when the GP acted the way she did.

I hope you get a good nights rest and things start coming together appointment-wise for your DS.

hereidrawtheline did you have to actually go into a unit?

Just had a thought: can you get the pre-school to write something for you with a list of concerns?

Did I read this right? How on earth did your GP put you in a psychiatric unit without your consent? There sounds like there is too much history for you to remain with this practice and be taken seriously

You have received some very good advice and support on this thread. I am so sorry you are having to go through all of this, it sounds exceptionally hard, and you should not have to be made to feel like it is all your fault!

I think changing your GP is sound advice, although not sure if this will hinder you getting your ds referral through quickly.

if the papers are already with the paed, I really don't think it will make a difference who the GP is - and it's not as if GP is willing to chase things up for HIDTL. Sorry you went through such awful experiences with the GP re:PND - I had different but awful experiences with the HV system - I can see why you are so upset, as all the difficulties re:DX and GP must be awakening all the old distressing memories.

Hi, This sounds familiar. ALthough my GP made referral it went missing and ds playschool and Pre school teacher both said he ok with them I didn't follow it up. DS now just turned five and I got dx three weeks ago of AS. I have never been so relieved in my life. All the feelings you describe such as feeling it your fault and people implying you can't control your child where how I felt when my ds was that age. I also had second ds then and that got a lot of the blame. No one seemed to believe he was like that anyway. But keep going I strongly believe mums know best. It is instinct when you know something up with your child. I knew ds not 'normal' from a year old but it had taken four years for someone with power to agree with me.

here idrawtheline#

Can relate my gp and hv or over 2 years ignored my concers even told me i was looking for problems when none exhisted, and that was over anxious mum, and how did i know he had devlopmental problems
as my experaince till then had been dealing with my kids medical issues , which he had failed to even spot they only got noticed by paed after various emergency visits.,

but i demanded and got and was prooved he does so walked in to surgery with letter and demanded a new gp and apology

do not let them browbeat you, you know your best of all were with them all the time they see 5 mins of him

To back up what others have said here, nearly every child with an ASD will appear 'normal' (whatever that is) some of the time. FWIW, I'm an adult with an ASD as you know, and our local GPs are still totally baffled that I'm not only ASD but quite profoundly so. They have to stare at their records and say "well I never! a lot.

They don't know how to spot it, and unless they're with me for a good long time they wouldn't be able to either.

It's a hidden disability - there isn't a tattoo on the child's head saying "Asperger's"!

And since a third of the population has had anxiety/depression/other mental health conditions etc, that's a heck of a lot of people for them to disbelieve about everything too.

Hi all! I slept ages last night and got up an hour ago and I still feel as if I havent slept at all! LOL, DS on the other hand is bouncing off the walls and happy as a lark so I shall have to wake myself up sharpish to keep up with him!

In the PND incident I did not go into the psychiatric unit. She sent a psychiatrist to my house to persuade me to go in willingly and I flat out refused. GP said I was being ungrateful for the help she was offering me. How strange. It was that psychiatrist who came to my house who sorted the AD's and some counselling for me which in turn sorted the problem out in general.

Just another funny example of my lovely GP - when I had pneumonia a few weeks ago & was in the hospital, I had to go to her the following week for a check up. She said in a puzzled voice (reading the hospital report) "it seems they think you have asthma too!" and I had to point out to her that she has been treating me for asthma for over 5 years and the previous week had given me my prescription for inhalers! Really the woman boggles the mind I truly do not know what her problem is. She is totally bizarre.

Thank you for all the great advice here. I will think about switching GP surgeries, it would have to be in the next village and as I dont drive will be a major hassle. As I said we wont see the woman GP anymore. If the man GP sorts himself out and the pead is helpful perhaps I wont need to but I dont know.

I just realised when I re-read my previous post that I said

"It went from PND and needing some prozac and a friendly voice to speak to - to me being in a bloody psychiatric unit without my DS who you could not have paid me to leave."

And understandably that is why you thought I had indeed been put in the unit. Just to clarify when I wrote that last night what I meant was, my need being assessed went from the first point to the second point. It went from me being ignored for bog standard PND to me being a danger to my son, in the doctors opinion. Hope that makes sense. Sorry if I am being crap at explaining myself I think I am just too tired and sometimes I have a tendency to get my sentence structure a little backwards LOL I dont know why I havent got an excuse, my Mum was an English teacher!

Of course you wish you could go back to America. I bet your friends and relatives there are fuming on your behalf.

The NHS people are treating you like a naughty child because because you dared take your own action on behalf of your child.
I suggest you write down the comment from the Health Visitor in particular.

I have a different problem to you, but I have also considered exiting the system out of disgust with the way my knowledge of my child was treated as peripheral whilst completely inaccurate comments were recorded as fact, coupled with statements saying "parent agrees". My doctor friend counselled against - she said that they will start to see me as a "problem patient" if I do that which could make it harder for DS2 if I need help later.

Do they see you perhaps as a potentially litigious American? Could that explain their extreme defensiveness? Might it cheer you up slightly to think that they might be a little bit scared of you......?

Are you keeping a diary? A blog would be ideal. I'm a former litigation lawyer and I think that lots and lots and lots of evidence recording your daily experiences would be good for your child, good for you, good for other doctors you see and good for your anxiety levels. When you get to see a developmental paed, you can then have a detailed account - which will give them something better to look at than reports from that GP.

Best wishes, and I'm so sorry they are pushing you into this battle.

Hereidrawtheline: I think you definitely have enough grounds there for an official complaint about your GP. It's a number of things, not just one - there is a whole string of completely unprofessional behaviour there. The Citizens' Advice Bureau webpage has a lot of info on how to lodge complaints, and, from what you say, this could actually make you the village's hero if a lot of people share your concerns about her.
No so-called health professional should ever - ever - make you feel that you are not a good mother on no grounds whatsoever, and they should always - always! - take your concerns seriously. That's their job after all, as specified in all official NHS guidelines.

and GP said "if it is different all the time then it is not autism, it is just behavioural problems"

This is exactly why we do have specialists. Our GPs have had no involvement at all in either of my boys' diagnoses.

HIDTL thats a good suggestion that lingle said to keep a diary,last year when CAMHS were saying no to ASD and we were insisting the consultant psych asked us to keep a diary.

So we did, a very very detailed one,almost 20 pages long for a week!!!!

i sent it to her and got a letter thanking me for it,she probably had to use a whole afternoon just to read it,bombard them with information, theres another thread on here with a mum whos daughter was dx,d with AS yesterday and she sent the paed 7 pages on her daughter which i thought was an excellent idea.

ive got pictures and videos of DD as well as more diaries that the psych is going to be given at our next appt.

your doctor sounds like a complete fruit the loop,i would certainly change your doctor if i were you.

I agree with GPs know nothing, we I went to see gp he was quite dismissive even asked me if ds1 could concentrate on a telly program!!!!! ds1 was also a difficult baby and ds2 came along just when i started thinking there were serious problems. We cope (some days)it is not easy but being a parent is not. When ds2 was born I had to have c-section (he was quite a lump) dp decided that would be a good time to have an extension built . now i dont even bother with gp unless its something that needs a prescription. I KNOW MY CHILDREN AND WHAT IS BEST FOR THEM not some old git who maybe spent 20 minutes reading about asd in a textbook and in his opinion if ds1 isnt in a corner rocking then its not asd.

I have to say that HIDTL's stress levels have been at max - absolute max.
Having DS be like he is, well that is enough.
To be waiting for a 'real' DX for so long and have it dropped repeatedly, that is horrendous.
To be bounced around, by every single well-meaning and some not-so-well-meaning 'experts' is awful to say the least.

Even though logically you know their opinion doesn't count any more than a layperson's, even though you know you just need to trust your own instincts and wait for someone who DOES know to come along, EVEN THOUGH ALL OF THAT, you still start to doubt yourself in exactly the way HIDTL is doing and has done and will do.

I have done it and the experience with the GP yesterday was rotten.

Oh I should say I am HIDTL's DH!

I couldn't get the GP to stop his rant and whenever I spoke he spoke over me. I couldn't finish a sentence and eventually said "Can I just speak for a second?" and he let me finish. It was getting us absolutely nowhere and I didn't wish to get into this pointless and damaging conversation with him. I had to actually say to him in the end, "Shall we leave it to the April appt, as this appt is mine anyway isn't it?"

If he did actually know what he was talking about, (and i'm sure there are some GPs who have fully looked into ASD for whatever reason - specialist subject and all that) I would then happily talk to him about it for hours. For example, he is an allergy specialist - just has an interest in it - and I would trust his opinions on allergies, but as has been said on this thread many times, he don't know of where he speak man. He dumb on dis subject.
Why people who are supposedly professional feel they have the right to go giving their unwarranted and unwanted opinions to all and sundry I don't know.

I would just like to finish by reiterating that HIDTL did the right thing in coming on and venting here. She is a fabulous mother and just generally a great person.
She has a lot of stress to deal with, her health has not been great recently, she is currently in bed with a terrible migraine (I wonder if stress has anything to do with that ) and I can't bear the thought of people dismissing her opinion. I am talking about the woman GP and the new HV. I do think the man GP will come round, once we've had the appt in April, and I do think we should try and change back to the original HV. But I will ensure that HIDTL's feelings/observations/expertise are not ignored. I share every one of them.

OK, now my rant is over and thanks to all who have supported HIDTL.

night night
xx

Thank you Tclanger

it is frustrating in the extreme isn't it?

let's hope karma exists.

Hi Tclanger, and all! I say Tclanger because please dont worry I took your comment about my anxiety at face value, as concern for me which is very kind of you.

As DH said I was in bed with a migraine, took my triptan (sp?) it didnt work so took co-codomal, passed out & just woke up ravenous for a snack now I am about to go back to bed!

I just wanted to post & say hi and thanks. You have all been a rock for me. The pead who we are seeing in April was supposed to phone me today to discuss my concerns but she didnt, I am going to phone her again tomorrow then, and hope it doesnt signify anything other than her having a very busy day, not her being as uninterested as the rest. I am totally going to go into this with her giving her the benefit of the doubt otherwise I will damn the whole thing from the start.

I think the last several days, well since that phone convo with the HV which was I think on Friday my stress levels have been through the roof culminating in this horrific migraine I got tonight (I've had them since I was 7 so sadly am no stranger but even by my standards this one was terrible) But I have a feeling tomorrow will be much better and I will feel refreshed.

I am keeping a diary of events but tbh I havent written in it in too long! So not very good of me. I will catch up tomorrow, I have been jotting a few things down on scraps of paper & word documents to be written down properly in the diary.

lingle, your post was very interesting to me it was interesting to hear from another Mum who was considering exiting the system - I share your concerns that it could come back to bite you later on though I still feel sorely tempted. And I dont think the doctors see me as a potentially litigious American at all, I have been in this country nearly a decade now and never a word of that mentioned, they would be totally bonkers to think that. But it was an interesting question of yours. I just dont think it is the case.

Well thanks again I am going to go back to bed now and thanks for getting me through the worst of it so far with my fears and things. It really is a hassle. A well meaning friend was over today and I had to justify everything to her as well and she said arnet you worried he is being labelled with something that is wrong? And I said yes I worry about that about equal amounts of time to that I spend trying to deal with the behaviour that has caused the whole thing! My life is one big worry and behaviour management right now! Actually am going to start a thread off topic...

Is your village too small to change GPs? I had a dreadful HV but a great GP (who kept me on out-of-area when I moved) and told the GP I'd have to change practices because the relationship with the HV was untenable. By chance, the HV was replaced and I stayed but I wouldn't hesitate to move (and did when I had a GP I didn't trust completely). I'm an OT and would suggest to anyone who is struggling with the relationship with any health professional that they move on.
If you can't (or don't want to change), it might be worth speaking to the GP and HV honestly about how unsupported you feel and that it doesn't help your situation at all. It's difficult, but it's often the best way to go (they shouldn't take it personally but if they do - tough cookies!).
Regardless of what DS's diagnosis is, the focus should be on helping you and your DS.
If it is 'only behavioural' then that can also be managed and should be.
When I worked as a paeds OT I saw countless chidren who had no formal diagnosis but clearly had specific needs which could be addressed through OT and SALT.
It's not about you being a crappy parent and 'time out' and being tough will definitely not help, whatever the diagnosis may be.
Hang in there!