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.

Sometimes GPs get these things completely spectacularly wrong. But as long as you have the referral it doesn't matter, you don't need the GP/HV for anything other than the referral. the time on the waiting list is horrendous, you end up doubting yourself whilst you feel your kid is being left to lose ground.

I wouldn't trust an HV or a Gps opinion on any of this.
Really i wouldn't 9and I am an SALT working in this field).They just don't have the expertise. Repeat request for specialist referral and don't respond to what they say.

So sorry, sounds awful.

They blame me. I know they do. I know they all think I am a precious mother and I bloody am not. Well I am but only in a good way. Of course I love DS stupidly and want the best for him. But I am not looking for problems. They have presented themselves to me and I am trying to fix them. I am just literally at the end of my rope with this I dont know how I can carry on knowing all these professionals are saying and writing down bad things about me. I am scared shitless.

Calm down.
How old is he?

ime the professionals who assessed DS were fully able to reach their own conclusions - somewhere in the depths of the HV notes I am sure there were absolutely stinking comments about my parenting ability (had a horrendous HV when DS was a baby and I was recovering from ante-natal depression) - but there have been absolutely no implications with DS's care or in the attitudes of NHS SALT/paed etc.

so sorry this is still going on tbh i had a good gp but as i say its out teacher we have problems with i would if you can afford it go and get private dx stuck to your guns its nonsease that they same all the time, i really do hope you get sorted soon!!

hereidrawtheline please email me [email protected] so I can send you a TTR invite

You aren't going mad, really you're not. My BIL is a GP (senior partner in his practice) and tbh his lack of knowledge re ASD is frightening. For example he had no clue of the signifance of pointing until I chatted about it with him, so I don't know how he'd pick up the early signs of ASD in a child unless they were glaringly obvious. Many children with ASD look totally "normal" in a 5 minute snapshot, what did your GP expect to see?

People (including professionals) make all sorts of sweeping statements re ASD without any in depth knowledge to back them up. Ignore them, trust your instincts and keep pushing. your son needs you to do it. You can do it and you will.

Just a thought but could you record some video footage of your ds behaving more typically to help back up your concerns?

thank you all.

Moondog DS is 2.7. I am calming down. I will definitely be having a glass of wine now as well! I just wrote the private specialist to give her the heads up that GP is angry & directing it at her as well as me, and apologising to her for it.

2shoes I will email you but I dont know what TTR is!

I just wish, I know this is probably wrong of me, but I just wish I could go home to America and start over. Not because I think America is better, its apples & oranges to me. I feel like I have just so not got on well with our GP's etc and it has been a slippery slope where now I have no respect from them at all. I just wish I could start over with a fresh set of people who would give me a chance. I just feel so alone and scared & upset. I really am not a hypochondriac mother or anything. I could write you a long list of what DS does that worries us but you have heard it all before.

kettle the HV suggested I video DS as well but she added the clause to not do it too much as it would reflect very poorly on me if I did so. And she wouldnt elaborate any further.

I second what the others say - GPs know next to nothing about autism and it sounds like this one is just on her high horse because she has been cut out of the loop and her ego is wounded. I have a non-autistic kid and a non-autistic and it is certainly not normal for a kid to repeat rituals 100 x a day, or have 6 hour meltdowns. If your DS has aspergers (ie autistic traits but normal language and normal IQ) then GPs are even worse at diagnosing that, as the paltry course they went on 10 years ago, or the little essay they read on it 20 years ago at med school, will only have focused on classic autism.

There are as many different kinds of autistic kids as there are different kinds of "normal" kids - that's what makes it such a strange and infuriating condition.

Follow your instincts, and put today down as a bad day but keep on with your own course. I found I had so many setbacks and tearful days in the early years, that in fact my skin started to toughen and now I (mostly) get angry not sad.

Big hugs to you - it is not your parenting, and anyone who even so much as implies that should be invited round to spend 24 hours alone with your DS!!! That's what I always want to say to people who have "useful advic2" - well, do you want to come round for 24 hours and try it your way, I'll go to the pub and leave you to it!

big hugs hereidrawtheline. You really are struggling with this. I don't live in the UK but I hope someone can guide you. You need to get a referral.

I don't understand the system in the UK. Is a GP allowed to make observations like that? No offence to GPs out there, but they are only General practitioners, they are not specialists.

how . I don't understand why, especially if your ds is not aware you're doing it, but maybe there's something we haven't thought of. Will have a think.

Is there any possibility of you changing GP? It sounds like you need someone on your side. Mine has been my SALT, and our SENCO is also fantastic.

Do they have any ASD support groups in your area? It might help you gain some knowledge of how the system works where you are.

I can see why the GP is over the over-the-phone dx, but can also see why you did it (as a validation of your queries about ds's issues and to check that you were right to be pursuing the NHS dx...which is what the GP should be sympathetic to and NOT questioning your observations and your request for the NHS to assess a child who is miserable with meltdowns etc.) You're not telling them he HAS autism - you're asking them to check. You'd be a crap parent to ignore these issues, so he should be a bit more understanding!

I would totally disagree that it being 'different all the time is not autism, it is just behavioural problems'. J seems to be getting more and more autistic at his worst times and in his worst moments, but can often pass for a quirky NT child when he's relaxed and feeling in control.

None of us can tell you if he's perfectly normal, high maintenance, 'just' very bright, autistic or otherwise, because we aren't qualified to dx and haven't even met him. All we can go off is what you say here and it doesn't tell us what he is. Everything you say makes me know, though, that you are a good mother. I don't think you should let the NHS request go; I think it needs following through with so that you get the answers you need.

GPs know very little about autism, particularly at the HF end. The same is true for the general public - the same was true for me until J was dx. We know what classical autism is, but HF is much more subtle so I wouldn't let an ignorant non-specialist make you question any of your sensible concerns.

I think, until (if) you get the NHS dx, people will question you because the phone dx is not going to be accepted. Maybe talk about autistic traits. Keep doing what you're doing and roll on your NHS assessment.

Please don't blame yourself! xx

Some GPs and HVs are just not very good at this sort of thing. They just can't be masters of all issues which present before them. They also hate other professionals undermining their opinions and given that the opinion was given on the phone, it gives them a perfect opportunity to dismiss it. Whether correct or not, I agree that it was probably an irresponsible thing to give an opinion out in this way.

I would imagine that given his young age, the problem can be more easily masked as toddler behaviour if you don't know what you're talking about and this is probably the problem you have with these professionals. Also, once they have made up their minds, it is hard to shift them.

But it is right, once you have a referral, you don't really need these guys, so concentrate on that. Has the referral been made? If so, chase the paediatrician's secretary and explain that you have been waiting for so long and the problems with the letter.

You sound, understandably, at the end of your tether and in danger of losing perspective too. Professionals can and do get things wrong. Neither the GP nor the HV are capable of making such a diagnosis. You need a proper assessment with an appropriately qualified paediatrician. Until then, you are the one who knows your child best, so stick to your guns

no dont give up its not you its THEM!!!!

my GP and HV were hopeless and clueless when i went to them both when DS was a toddler,they waved me away and i got a prescription for prozac.

he was finally dx,d when he was 9.

ive been videoing DD as well as we are sort of going through the assessment,she is an angel at school and of course it must be down to our parenting right?

ive got 4 videos of her but im going to show them 2, and ive got photos of her playing,lining things up etc,i suppose i can understand what your HV is saying if you sit there and show them 10-20 videos of him but a couple or more i cant see the harm in it.

I don't know of ANY child on the spectrum who behaves exactly the same way all the time. For example Ds1 has always got problems with language and communication and interaction, but he can vary from spending ages drawing the same pictures over and over, to giggling loudly and shouting as he clambers onto my shoulders and flings himself onto the settee. So sometimes he comes across as very quiet and contained and other times as very active and loud and if you saw him at different times you could come to different interpretations about how he is.

the referral has been made although obviously lost 4 times. I phoned the doctor who we are being referred to today - well I phoned her secretary - and she said we were on the list of patients to be seen but hadnt been given a slot yet. I explained what has been happening and she has booked us in for 22 April and also left a message for the doctor to phone me, hopefully tomorrow, to discuss the whole thing. So he will be seen. I am just afraid its all damned before we have even got in the door though I am sure that isnt the case. And it is hard and upsetting for the people I see on a regular basis, because its a small village, GP and HV, to so totally be against me on this. But you are all right I need to just get a thicker skin. I am getting there. I just feel really insecure about the whole thing right now. From the beginning I have just been trying to do the right thing for DS and it feels like I am in a maze, and being criticised for not getting through it efficiently enough or with a big enough smile or enough proof I have a right to be in the maze in the first place.

Am overthinking, sorry its just been a bloody hard couple of days with regards to the so-called-experts. (good name by the way)

FWIW, my last GP looked at me in shock, and went scurrying off to cross check his notes when i mentioned that dd1 is ASD.

FFS, as if I was going to say, oh no, silly me, i mean she is a bit tired (or similar)

honestly, he did a double take, looked over at dd1 (who was gazing out of the window) ad said "really? Autistic? I'd never have picked that" (and sadly he wasn't being sarcastic)

A lovely GP, but useless in this instance -not only had he not noticed that dd1 is sgnificantly behind in development but he also hadn't noticed the reams of reports that were being sent to him form paeds, SALT, Sunderland, OT etc etc.

Try not to take it to heart, GP's really are not the best for this sort of thing.

I hope you get a good night's sleep tonight. I think you need some time for you, is there anyone who could have your ds for you even for an hour or two? I know it's difficult, I found it very hard when I had both ds' at home full time until ds1 started preschool. Now I juggle things around that and it's helped preserve my sanity.

I know its super early but I am actually going to go to bed now I am just so tired that staying up will do me no good. There really isnt any time I can have away from DS besides Thursday am when he goes to preschool but I will be ok, the time I get in the evenings & his nap will keep me going. Thanks again

It is not you! Your GP is annoyed because you ahve chosen to be proactive & seek a second opinion, hot very professional of him to vent his anger at you or your dh.

Whicha rea are you in, (one of us may be local) are there any sn preschool support groups near you. You don't need a dx or referal but they are a godd source of support & local info.
Ask at your nearest surestart centre they should be able to give you details.

Would it be possible for you to see a private psych or developmental paed with your ds. You could still keep your NHS appointment.

Just trying to think of some sources of support for you until you can get to see the paed.

I'm sorry your GP and HV are being so unsupportive, I would just go out of my way to avoid them until you've had the appointment or if you have to see them just quite frankly tell them you are not prepared to discuss the ASD/your son topic. DS1's referral was lost at least twice, I wonder where they all go

FWIW There is a GP at our village practice who sounds very much like yours; when DS1 was a baby he was under a paediatrician. I remember going to see the GP because DS1 had really bad tummy problems and the GP wearily agreed to write a letter for the paed appt. I had to open it to check the GP's address to give the hospital receptionist and he had put on it "mother reports {DS1 name} has digestive problems. Please note that the mother has recently been prescribed citalapram" (which is an anti-depressant)
I could not believe and I did not pass the note over to the Paed.

HereIdrawtheline - hope you are getting some rest. Sounds SO stressful. But you've got your appointment which is great news. And at that point you don't need to have anything more to do with GP.

If I was you I would change GP. It might be a bit tricky in small village but even if you have to drive to next village - you're perfectly within your rights to change and you can't have someone undermining everything you say because of PND years ago.

Good luck for 22 April.