Active discussions

Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To want to smack this woman in the mouth?

130 replies

QueenOfTheEighthKingdom · 29/05/2019 20:40

Fantasising about it is about all I can do but she sure will get a mouthful if I ever see her again!

DS (17) was diagnosed with Autism today. Almost 6 years after my community paediatrician insisted he didn't have it.

6 years of hell he's gone through not being able to access the support and therapeutic educational opportunities he could have had, battling through mainstream education and sanctions for behaviour he can't control creating a depressed, massively anxious, totally disengaged teenager who has been misunderstood and blamed for years!

AAARRGGGHHHHH!

OP posts:
Gamble66 · 30/05/2019 00:37

People's lack of empathy is ironic

gingerpops · 30/05/2019 01:09

Try to get rid of your violent tendency by doing some very energetic activity, such as digging, scrubbing floors, going up and down ladders to clean high-up places you don't often get to, going for an exhausting run.

RageAgainstTheVendingMachine · 30/05/2019 01:12

ohgodohgodohgodohgodohgodohgodohgodohgodohgodohgodohgod

I am terrified. Truly.
I am returning to live in the UK in the Summer.
Why?
To pursue a potential ASD/PDA diagnosis.
Why?
Because DS is due to start school in Germany in September, cannot/will not learn German, has red flags I know to be potential ASD (I taught for 13 years including a school with an ASD base), the paed here said (I quote) he can't be autistic, he makes eye contact and is verbal, I am coming home to a system I thought I could advocate better for him in, home schooling is illegal in Germany, DS's anxiety is already through the roof as well as sensory issues...and practically everything I am reading tells me budgets are cut, he won't be atypical enough for special school, he won't be neurotypical enough for mainstream, I will be a lone parent relying on money spouse sends to the UK, I might not be able to teach if DS is given exclusions/bolts/refuses school, I cannot afford private doctor/schooling/therapy/appeals and keep reading that LEAs ignore private diagnoses.....

Anyone reading this can you give me any hope?
Can you tell me which steps first?
Anyone had successful primary support?
Does anyone have experience/knowledge of Tameside LEA?

If so, please PM me or tell me of your experience on here
Sorry for the derail OP
And so very very sorry for what you and your DS have been put through Flowers

YourSarcasmIsDripping · 30/05/2019 01:13

That reply gave me violent tendencies.Hmm

YourSarcasmIsDripping · 30/05/2019 01:16

@RageAgainstTheVendingMachine I suggest you start a new thread on the SEN board. There are many knowledgeable people and parents on there,who know and fought the system. You will find information,support and understanding.

Good luck Thanks

RageAgainstTheVendingMachine · 30/05/2019 01:16

Please tell me you are referring to ginger not me dripping I said sorry to Op for hijack, I am just panicking immensely about what I am coming home to. Sad

RageAgainstTheVendingMachine · 30/05/2019 01:17

Ah x-post. Thank you. Flowers

YourSarcasmIsDripping · 30/05/2019 01:17

Yes it was to ginger sorry,your post wasn't showing when I replied. I do apologise. It probably sounded really bas from where you are.

ReanimatedSGB · 30/05/2019 01:23

The more I read, the more I realise how lucky we have been. It was actually me that was sort of resisting a diagnosis for a while: I thought it was a combination of DS having a lot of friends with ASD and imitating some behaviours, when he was little (handflapping etc) and also just being... clever. And a part of me did was not happy about the idea of my clever kid being seen as a 'problem'.
DS continued to cope well enough up until about a year ago, partly because we know so many kids - and adults - on the spectrum, so he has never really felt like the odd one out. We had made some tentative steps towards referral/diagnosis but been told that 'he's coping, it will take years to get an appointment, he's probably OK'.
Then there was an incident at school, which the school handled very sensibly, but they (with our permission) pushed for referral/DX and we got a DX last month. And DS is genuinely happier and more settled (well, until he gets into watching more ghostbuster shit on Youtube and starts having nightmares again.) And there is all this additional stuff we can access and do.

RageAgainstTheVendingMachine · 30/05/2019 01:28

No lovey, my fault (paranoid) i'm just feeling a bit despondent atm, can't stop crying, need to get my game face on... I will post on SN, I did get some help re procedure EHCPS etc I'm just feeling a bit pessimistic right now, sorry, probably lack of sleep (DS is still awake, thankfully tomorrow is a bank holiday in Germany) x

SimplySteveRedux · 30/05/2019 01:56

DS had symptoms from 2, we were fobbed off for years. DS had a diagnosis abroad in under two months. It’s total shit one person is the gatekeeper of serviced (in this and other medical departments).

lifeinthedeep · 30/05/2019 02:22

Correct me if I’m wrong, but I thought that you needed to be more specialised to confirm a non-diagnosis of Autism? I thought only a psychologist could diagnose Autism? If so, it makes the paediatrician’s attitude even more unacceptable.

Treaclepie19 · 30/05/2019 06:08

Just reading this makes me question our paediatrician. Only the other week she put down our 3yo's behaviours as within the normal range.
No, I don't think you're unreasonable for being angry.

herculepoirot2 · 30/05/2019 06:11

I sympathise, but medicine is a subjective discipline to some extent. You are only ever seeking a professional opinion. It’s not appropriate to blame the professional personally because they don’t agree with you, much as I sympathise with the difficulties people are facing in this thread. Sorry!

Robotindisguise · 30/05/2019 06:19

OP I get it. After DD’s diagnosis, which includes Dyspraxia, I felt absolute cold rage at the private consultant I’d shelled £200 for who literally laughed in my face when I asked about dyspraxia. And the normally thorough GP who asked me why I wanted to “label” my child. Well I tell you what, missus - I’ve “labelled” her now and because her teacher knows what’s likely to work and what’s not, she’s had her first really good year at school since Reception. So chew on that! I fantasise about writing them follow-up letters but they won’t remember me and they’d only be filed in the bin...

Robotindisguise · 30/05/2019 06:23

@rageagainstthevendingmachine - come over to SN. We’ll get you where you need to be together. Would your budget stretch to a private clinical psychologist if the nhs is unhelpful? It’d be about £800 down south...

herculepoirot2 · 30/05/2019 06:36

JanMeyer

That’s inherent in the medical profession, not just for autism. People disagree both about what symptoms ‘definitely’ should lead to a diagnosis and also about the symptoms they are seeing, in terms of frequency and severity.

It sounds horribly frustrating to be the parent in this scenario, but “smack this woman in the mouth?” like it’s an acceptable thing to want to do? It isn’t. HCPs are doing their best for their patients.

N2986 · 30/05/2019 07:26

Please stop giving the op a hard time. She's not being literal just expressing her frustration FFS.

Op your post has actually given me hope. My ds is 4 and we have been told by camhs and the paediatrician that he doesn't meet enough requirements to have add. Basically because he talks and is very engaging with adults.

They've treated me like i have some sort of Munchausen by proxy because I disagreed with their diagnosis. Ds is amazing and I love him to bits but most of the time he is a nightmare to handle. But according to them it's bad parenting and I should try and incentivise good behaviour with sweets etc. Like I haven't tried everything already.

It's frustrating because I have continuously pushed ds to reach certain milestones such as potty training (which was horrific) and now feel like I shouldn't have bothered.

The verdict on Ds was that he is a very sensitive boy with some sensory issues and is easily tired. I'm just hoping once he's in school things may show themselves more clearly.

herculepoirot2 · 30/05/2019 07:31

Please stop giving the op a hard time. She's not being literal just expressing her frustration FFS.

The same wording would be called out on virtually any other thread. I get that she is frustrated. I think the attitude that, 6 years on, a misdiagnosis is the personal fault of the diagnosing medic is problematic, and am saying so. That’s not ‘giving her a hard time’, it’s answering her question. She needs to move forward.

Punxsutawney · 30/05/2019 07:31

We are presently on the ASD diagnosis pathway with a nearly 15 year old and I can tell you it's awful. He has fallen apart because of having no support or intervention for all these years. The long wait for assessment is not helping at all. I struggle sometimes to see a way forward with him. His school anxiety started on Tuesday this week even though he doesn't go back until Monday next week. Whilst we watch things getting worse he is just a number on a waiting list.

quietcontentment · 30/05/2019 07:43

My son got diagnosed last year after 3 yrs if trying, one if the people who diagnosed him actually turned us away twice saying firstly it was my parenting then secondly he was just socially awkward despite evidence to the contrary.
The school had to go to the far end of a fart to help me. I understand your frustration, I did feel like asking her if she remembered fobbing us off as if she hadnt then his primary years would have turned out very different, but what good would it have done? It wouldn't fix the problems it had caused, the damage was done.

herculepoirot2 · 30/05/2019 07:46

I think HCPs are in a really difficult position. The reality is, sometimes their professional opinion is that the problem lies with the parenting. They have to say that if they think it. It’s not an option for them to say they think a child has a condition when they don’t. Naturally that angers parents who have gone to them worried and looking for a different sort of help. Rock and a hard place.

JanMeyer · 30/05/2019 07:52

That’s inherent in the medical profession, not just for autism. People disagree both about what symptoms ‘definitely’ should lead to a diagnosis and also about the symptoms they are seeing, in terms of frequency and severity.

But that was my point, doctors are using the fact a child makes eye contact as some kind of definite proof they can't be autistic. That's not a difference of opinion, it's bullshit. Some doctors are just completely ignorant of the most basic of facts about autism. It's not a difference of opinion, not least because doctors like that aren't knowledgeable enough about autism to have a valid opinion.

herculepoirot2 · 30/05/2019 07:56

JanMeyer

Then don’t consult them. You can’t go to a doctor and say, “If you agree me, your opinion is valid; if you don’t, you’re uninformed.” Well, you can, but it’s not their fault. If a doctor is making a clear error, a second opinion is where you need to go, not “a smack in the mouth”, a mouthful of abuse, or any other personal attack. They simply need some more training.

JanMeyer · 30/05/2019 08:01

the paed here said (I quote) he can't be autistic, he makes eye contact and is verbal

When this is the level of ignorance people are dealing with, I don't blame anyone for feeling the way the OP does. I mean for fucks sake there are doctors who think autistic people are all non-verbal. Even more ironically the poster I quoted above is in Germany. I mean seriously, Aspergers was first written about in German, and here we have a (presumably) German doctor who doesn't have the first clue about it.