To want to smack this woman in the mouth?

[QueenOfTheEighthKingdom]

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!

JanMeyer

Then there is a training need, not a need for verbal or other forms of abuse. Doctors are doing their best in an ill-defined and emotive area of medicine. Give them a break.

YANBU

Here the community paed is God in the Autism world, they literally own our children's future. They have the ability to greatly improve or destroy lives.

And they have destroyed many.......... particularly amongst those who aren't savvy enough, who don't know how the system works. Or are just too bogged down to carry on.

Today there are SEND marches all around the country, protesting the cuts to funding. We as parent carers are fed up.........but I must confess I don't think I can muster the enthusiasm to support mine. I really don't think it will make any difference.

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.

That's pathetic, they need more training? What you mean like reading the autism myths page on the NAS website? They're supposed to be experts in child development and they don't know already that a child making eye contact doesn't rule out autism, or that there's no such thing as a child being too intelligent to be autistic? A five minute Google would tell them they're wrong, they just don't care. It is most definitely their fault they are making clinical decisions based on their own narrow views (see the irony of that?) of what they think autism is rather than the actual diagnostic criteria.

Then there is a training need, not a need for verbal or other forms of abuse. Doctors are doing their best in an ill-defined and emotive area of medicine. Give them a break.

No, doctors that are this ignorant are not doing their best, not by a long shot. Like I said before a five minute Google would correct a lot of their erroneous views. I'll save my sympathy thanks for the people trying to navigate the system and trying to get help for their child.
And ranting online is not verbally abusing doctors, people are perfectly within their rights to be angry about substandard care. Or are you one of those people who think doctors can do no wrong and should never be criticised?

JanMeyer my son's paed rolled his fucking eyes and yawned when I was listing my concerns.

My son is very profoundly Autistic. So fuck knows how people with higher functioning kids are treated..........then the was the one they wheeled out of retirement as our HA couldn't get a paed. He was nice enough, but nodded off during our consultation. I mean FFS !!

Until you or your child is on the pathway it is difficult to explain what it feels like. You feel lost, unsupported, ignored. Alongside trying to get help from the NHS you are also quite often fighting battles with a school for support. You feel helpless when you see your teenager deteriorating in front of you and there just doesn't seem to be anyone there to help. I can't change Ds's secondary school experience the damage is done, I'm just trying to get him the support he needs so the future maybe a bit more positive for him.

JanMeyer

I’m really sorry but yes: if they are wrong, it is a training need. There is never a call for abuse. This area of medicine is beset with the issue of parents thinking one thing, doctors another, and it causes conflict. Conflict can not be solved by insults and threats.

My view is that doctors can be and often are wrong, but seeing as they spend years training and studying and I don’t, a) they are more likely to be right than I am and b) if they are wrong, it is more likely to be because the area of debate is controversial, than that they are narrow-minded.

I think coming online and talking about smacking doctors in the mouth is appalling.

Well it's not like OP is going to go into the woman's office say "remember me from 6 years ago?" And actually punch her in the face.

She is angry and frustrated and possibly heartbroken and vented online,through words, in a fairly safe space. I doubt she acting goes around punching people.

There is never a call for abuse. This area of medicine is beset with the issue of parents thinking one thing, doctors another, and it causes conflict.

Really, you don't think a doctor who rolls his eyes at a parent listing their concerns deserves abuse?
Its not parents thinking one thing one doctors another. It's doctors thinking they know when in reality they have no clue. Tell me, why shouldn't parents talk crap about doctors who lie to them?

There's no excuse for it, it takes a few minutes to read the DSM criteria for autism, to see that nowhere in there does it say if a child makes eye contact they can't be autistic. Any doctor who tells parents things like that is a liar. Jesus christ, there are people who aren't medical professionals that understand this just fine. A paediatrician has no excuse for coming out with such bullshit, none. Their ignorant stupidity is the cause of the conflict, not the parents who refuse to listen to it.

YourSarcasmIsDripping

It’s not like I think she is going to do it. It’s that I think the desire to do it reflects an uncharitable view of what the doctor did. And I suspect, if her attitude is common (as it appears to be based on this thread) the doctor’s job must border on impossible.

JanMeyer

I don’t think he or she deserves abuse. But where did the OP say the doctor rolled his/her eyes?

Honestly, you sound very aggressive.

Threads like this make me appreciate how relatively lucky we are .

Son 8 has ASD, Dyslexia, SPD.

We are lucky that a switched on SENCO got the ball rolling for the long multi disciplinary ASD assessment process

We are lucky that we have been able to resource other assessments.

We are lucky that he has a hope of getting support thanks to this diagnosis

We are lucky that we can tell him that his difficulties relative to his peers are fine, that they are understood and that he has every chance of leading a good life and accepting himself.

We don't always feel lucky...

It's hard helping SEN kids and their mental health is so so incredibly vulnerable.

I get it OP I REALLY feel for you and your boy

I was refused testing for dyslexia when I was a child because I could read and write well. It was only as an adult, through work, that I was diagnosed with severe dyslexia — it was at that point that I was told people with high IQs present very differently than those with middle to average IQs. From my family’s experience the same seems to apply for Autism / ASD — symptoms can vary significantly, and for that reason mistakes will occur. It’s never okay to abuse someone because of it. Generally the most severe cases of learning disorders will always get diagnosed while milder cases are hit and miss — but in the case of the milder cases often the kids involved can lead fairly normal lives.

And you sound aggressive, OP. But I am not going to waste more time on you as I have better things to do than listen to abuse. Glad you got your son’s diagnosis sorted. Best of luck.

For every eye rolling paediatrician, there are multiple angry, anxious, aggressive parents who actually do physically attack the person who isn't saying what they want to hear. A diagnosis of high functioning autism will always be a subjective opinion, based not just on observation of the child but also on evidence given by other people with subjective opinions (usually parents, psychologist(s) and teachers). Hopefully, the diagnosis will be given (or not given) by someone with a sympathetic manner, but it will still be a subjective opinion. Unfortunately, once the subjective idea that the parents are really not helping the situation has come into play, I think it is harder to decide (subjectively) that regardless of your subjective opinion on parenting ability, the child in front of you still has a developmental disorder that will cause them lifelong problems.

uncharitable

A parent who has watched her child suffer for years as a direct result of a doctor’s error is not obliged to be unendingly “charitable”, pushing down all her valid anger to perform endless, unbreakable reasonableness even in an anonymous non-literal online post, until she implodes.

If you feel obliged to police the way a parent in that position expresses herself in a Mumsnet vent, maybe you’re the one being uncharitable. Calling it “appalling” - really? It just sounds like you have no idea.

Yes, doctors as a rule do incredible work and deserve support and the benefit of the doubt. That doesn’t make it wrong for patients to allow themselves the odd moment of cathartic rage if they’ve been badly let down by individuals within the system.

May e the community paed was right and the new diagnosis is wrong. Just sayin

Well Paed has been on long term leave since the beginning of the year and it is unlikely she'll be back apparently.

I wonder if other complaints had been made after what my GP told me.

Generally the most severe cases of learning disorders will always get diagnosed while milder cases are hit and miss — but in the case of the milder cases often the kids involved can lead fairly normal lives.

The more obvious/stereotypical a presentation is the more likely ASC is to be diagnosed, rather than how severely someone is affected.

This is a great article, which explains the spectrum theaspergian.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/.

Understanding is improving, but it is very slow. Fwiw I don’t think OP is actually advocating violence, but any parent would be understandably angry and frustrated when a professional denies support because they can’t see past their own prejudices (particularly in this case, as clearly it happened over a long period of time)

Understanding is improving, but it is very slow

Over 20 years ago this was the norm, unless your child was markedly different to their peers in a negative or aggressive way and/or very disruptive and/or couldn't keep up with their peers in class, you were fobbed off by all and sundry for years, sometimes even after your unsupported child fell apart.

Unfortunately, this attitude still prevails.

When I first looked at MN's SN boards, I thought it would be great to see how things had progressed after the dreadful experiences my family had been through for so many years, but I was saddened to find that in a lot of cases, no progress has been made at all with regard to children being recognised as different enough to be being put on the diagnostic pathway.

It's still ongoing, parents are still fobbed off and given ridiculous reasons by professionals as to why they will not grant access to or support an application for that child to access the pathway to a diagnosis. SENCOS and teachers tell parents their child does not have autism yet they are not qualified to do so.
Yet NONE of those reasons form any part of the diagnostics for autism, because not all autistic people exhibit all of these behaviours.

Cannot be autistic because they
Can maintain eye contact
Show empathy
Can do same classroom work as their peers
All autistics love maths and science but they don't
Have mental health problems, (anxiety) and need to be more resilient
Will grow out of it
Show no outward signs so it could only ever be "mild" because no-one would ever know
Parents are mollycoddling that's why there are signs of immaturity
Parents are helicoptering
Parents are pandering
There are loads more myths and excuses

Diagnoses for children are only given after exhaustive scored tests and observations usually by a multi-disciplinary team often after a very long wait, it can take several years in some cases.

I have no idea why anyone would want to disparage a medical diagnosis, but there's so much prejudice around autism that people who don't know what it's like to live with give it the term "label" as though it's something so insignificant that someone could peel it off and discard it and its symptoms at will.

I look forward to the day when there is much more understanding of autism, but it's not going to happen in the short term. Lots of comments on this thread reflect that.
Anyone who has been in a similar situation to the OP and seen their child denied help and support year after year after year can understand her feelings.

@herculepoirot2 So many of us with the same issues yet you are blindly waving your flag around and being obtuse and obnoxious.

This is a massive inherent issue in various forms of medicine. ASD, other personality disorders, IBS, PCS, ME, Myasthenia Gravis, Lupus, Lyme Disease, Gallstones producing biliary symptoms, Pamcreatitis, Migraine, want me to continue? I could carry on for over an hour listing conditions. Would you support all these medical specialities, and the specialists making the decisions, when they are clearly making shitty decisions based on personal belief rather than medical fact?

You know, it wasn't so long ago that medical,specialists were spouting that HIV/AIDS was a disease of gay men. And also not so long ago that Andrew fucking Wakeman produced his bullshit paper of vaccinations causing autism.

To @JanMeyer and everyone else, I'm humbled by your collective empathy and I'm so sorry you are suffering this utter bullshit. Took until DS was 19 to receive a dx, from displaying symptoms aged two. His primary head teachers daughter had ASD and in her opinion DS had the exact replicated symptoms. Yet it took 17 years, a move to a foreign country to get a diagnosis. A diagnosis that took a handful of months only.

SimplySteveRedux

No flag. I happen to disagree with you. Sorry if that’s such an issue for you.

Sorry, but YABU. If his life was hell in mainstream it’s the people there who didn’t understand him and adjust for his needs that need to be blamed. A diagnosis changes nothing really and probably wouldn’t have guaranteed access to specialist provision in any case if he’s high functioning enough for her to have thought he didn’t have it. Specialist provision is mostly for severe cases.
It’s understandable you’re upset, but it’s misdirected.

Pringlefan that's the way it SHOULD work, we all know that but in reality many parents with undiagnosed children have found that schools will not provide needs-based interventions unless there's a diagnosis.

if he’s high functioning enough for her to have thought he didn’t have it
That's conjecture on your part. "High functioning" doesn't mean what most people think it means. High functioning autism is autism without learning difficulties.

It does NOT mean 'can pass for NT' or 'Not noticeably autistic'

I feel for you and your DS, OP. That is really tough.