Could my friend have munchausens?

[Anonnymouse124]

I have a friend with two children and they have both been diagnosed with autism. A mutual friend is convinced she’s manipulating the system to get attention and benefits as she had paid for private doctor appointments. I thought this was the most disgusting accusation so am trying to work out what I am missing. Is it even possible for this to happen?

I think it’s important to remember that generally speaking neurodivergent children unmask initially only when they are around people they feel safe with - this is nearly always mum. It is incredibly common for (in fact in my experience it’s the norm) for mums to be saying for years that something is up while other people say ‘oh well they’re not like that for me’ and are adamant that there’s nothing wrong and it’s the mum’s problem (either after money or just can’t handle their behaviour). Inevitably the child hits puberty and can’t mask as easily and all of a sudden lo and behold the mum was right for all of these years.

So basically I’d be inclined to believe the person with the kids all of the time rather than someone who just sees snippets of their behaviour.

The NHS waiting list is over 2 years in some places just to have an assessment for Neurodiversity. In my local area it can take 6 years from the initial referral to a diagnosis. The system is broken. Just to get the forms triaged cam take 12-18 months here.

I used right to choose to take my dd through a private assessment company. Start to finish was less than 16 weeks.

Dd has been diagnosed as having autism. However, everything through the school and NHS system is progressed off 1 triage form which only assesses the typical male presentation. Sp under the NHS I would have waited 12-18 months for someone to read a form not designed to diagnose a female and have ruled it as no further action.

So 1 - private diagnosis is possible without having to pay for.

2 - you are gossiping because you have posted on a public discussion forum

3 your "mutual" friend needs to pick her friends better because both you and the other one are awful

My experience of getting my son diagnosed was a three year wait with the NHS. He was seen at three separate in person appointments by different medical professionals. He was also observed in school and his teachers filled out a questionnaire. My daughter now faces a three year wait to be seen too. They receive no benefits or TA support at school.

Interestingly the people who share their experience of a child getting a ASD diagnosis from one online appointment are often referring to a friend’s child, not their own.

As well as all the stress of having one (possibly two) autistic children who struggle at school and have meltdowns at home, I can now realise that telling anyone about this carries the risk of them gossiping about me and saying I have Munchasens by proxy! Brilliant

They may have phrased the question badly, or your friends may have misheard, but under the NHS pathway I was consulted in a way that could gave been misunderstood as "being given a choice" by someone who isn't very bright.

Once they have gathered all the evidence, if the child doesn't meet the criteria at all then no diagnosis is issued and no choice is guven. If they meet the criteria for the very-high-needs part of the specrrum then there's no need for this conversation, but for a child who presents in the parts of the spectrum that used to be naned after a nazi, where it is possible for a child with high masking and high intelligence to "pass" in the neurotypical world, they do take a pause at this point in the process and have a discussion with the parents. It's not an NHS v Private thing, it happens in both, and the gist is along the lines of "we have enough evidence to say that your child does have autism but if you as their parents feel that it's not in their best interests to have that label then this is your last chance to say so because once we issue the diagnosis it is on the child's medical record permanently and cannot be removed". However they try to word it so as to not make an actual declarative statement of "yes your child is autistic" until they have established which direction the parent considers to be in the child's best interests.

As pp say there are some parents who actively oppose their child being diagnosed and in a case where one parent wants a diagnosis and the other doesn't, the latter may have only consented to the assessment as a way to prove their child doesn't have asd.

There are consequences to having a diagnosis that some families may want to avoid, eg I believe it's much more difficult to emmigrate to Australia/Canada/NZ if a member of the family has autism (though not absolutely impossible)

This is very possible. Posters telling you it’s not and telling you to butt out clearly don’t read the news.

Over diagnosis is a big thing. I am in the medical profession and my GP friends tell me it’s just easier to give parents what they want.

Online assessments can be done if there's no one local but it's still all the same screening tests, info gathering and video call appointments, not sure what your point is?

Munchausens is different to pursuing a diagnosis for benefits (not saying that this is definitely what’s happening here, it could just be a mum that’s struggling with waiting times on NHS and is pursuing a private diagnosis) but munchousens by proxy is a mental health condition that causes the (parent in this case) to make the child deliberately sick in order to get attention from doctors, usually invasive treatments. Answering a few questions to get a diagnosis for benefits is not a form of this.

I think human beings have always varied in their personalities and behaviour and that is a good thing.

It seems to me that we are now less accepting of ordinary differences. Rather than kids being 'the shy one' or the 'geeky one' or 'the one who can't stand losing' people like to diagnose and medicalise.

I think a school system in which there are a lot of targets and assessments is not always helping.

There's also a conflict between this 'measuring' culture which children have to fit into, and an intensely child-centred culture.

The internet and parenting blogs also encourage a culture where parents are constantly hovering over children and worrying about their behaviour.

I think this creates a situation in which children are encouraged to think there is something wrong, when children are unhappy and when they struggle - and to be intensely anxious about how they'll get on when the future is so uncertain, and also in which white collar jobs tend to demand a lot of 'soft skills' as opposed to more traditional types of manual work.

I'm saying this in the context of a family where there is some autism. A member of my wider family is 6. They are non-verbal. They cannot use the toilet independently. They are very distressed by lots of everyday noises. They have no sense of danger and will try to run out of the house into to the road. Sometimes they will eat soil and put wood chippings and stones into their mouth. They have what was traditionally known as 'autism'.

I think they have almost nothing in common with some of the bright but shy young people I know, who have passed their exams and can function pretty well in most situations - but who are convinced their differences are a significant impairment - and who have been affirmed in this belief by others.

That there doesn't have to be a face to face consultation.

I don’t understand, are diagnosis made based on just what others say now? My then 4yr old daughter had assessments for ages and many were done in person and I was either to leave the room or not talk. Understandably.

For goodness sake, mind your own business and don't indulge in gossip and speculation about another woman and her children.

I have two SEN kids who in the surface look and act pretty normally, the diagnosis we’re both pushed from school at an early age. It’s only when you spend a lot of time with them that you realise the differences and struggles they have. In many cases it’s school that are pushing the diagnosis, the reason is that the schools are underfunded and can’t support kids who need additional help without a diagnosis and additional funding which a diagnosis is needed for.
my kids would be find if homeschooled, they could learn in a way that suits them but I can’t homeschool them so we had to go down this route.

There are people like this-I have no idea of your friend is one. But I worked with someone who has every syndrome going. Including ones you e never heard of. She spent many months off sick with one particular condition then when her full sick pay ran out, miraculously recovered. She will wait another 6 months then go off sick again. She plays the system and uses all the reasonable adjustments to get herself an easier life while the rest of us had to pick up her work. I’ve heard she’s now been diagnosed with a condition which is just diagnosed by description-she will know how to answer the questionnaires. So yes, there are people like this.

Do you think she said "now children when we go to all of these doctors appointments I want you to flap your hands, line up all the pens on the desk by size order and avoid eye contact at all costs?"

How on earth do you think they got diagnosed? If she's gone private the doctors get paid regardless of which way they diagnose.

And? Do you think a clinician can watch a child play in person but not if they're doing so on a video? Or that a interviewing a parent over video invalidates the assessment?

I wasn’t going to get into this, but obviously GPs don’t diagnose, just agree to refer, and many refuse. DS2’s referral was refused until lockdown where he really started struggling with being out of school despite our best efforts.
Here in our part of Scotland, the CAMHS ASD pathway waiting list is now 4 years.
“Luckily” school provide support based on need, not diagnosis.
DS2 does have a diagnosis of autism but it doesn’t ‘get’ him anything. If he goes to uni, he will get disabled students allowance I suppose.
His friends don’t know.
Partly his diagnosis was to help him understand himself and his challenges. Not so we could get benefits/ accommodations/ some sort of autism badge.

She probably paid for private assessment as the NHS system is so overstretched it can take years in some areas. Presumably the private assessment is accepted as valid by whichever department pays any benefits.

Medical professional here.

I would disagree with A doctor whether paid private or not is not going to diagnose autism unless it is present That’s not entirely true, you would not believe how manipulative some parents can be towards NHS doctors to get the answer they want. Privately it’s even easier - one doctor won’t diagnose, you just pay another to diagnose. And a lot of private doctors get money for diagnosing… so I absolutely believe a doctor will diagnose autisim whether present or not. They will find a way or take a parents word for it.

in saying that, there is a difference between getting a diagnosis for benefits and having Munchausen. Munchausen is really serious and dangerous and would probably go further than just an autism diagnosis, however you never know where that might lead.

There is no way you’re a medical professional, role please and in what sector?

And no at £3k a pop parents don’t keep paying until they get a diagnosis particularly when there is zero benefit for somebody without autism and a lot of stigma for those with autism. Why would you pay £££££ of pounds for a diagnosis over and again? Why?

Because they are clever.

So

• autism runs in families
• NHS assessment lists are terribly long, and a private assessment isn't uncommon
• if the assessment is done properly, and it should be, there's rating scales and testing for the child (typically the ADOS-2 for a child this age). It's not all down on the parent and it would be extremely difficult to fake.

MbP is now known as factitious disorder imposed on another (ICD and DSM) or medical child abuse. It does happen, it's not fully discredited, but it's rare. I recall an American case where they managed to catch the mother in the act, I think they caught her contaminating her child's IV line.

I would not rush to assume factitious disorder simply because 2 children in a family have a diagnosis. That's a massive leap and I would steer clear of this "friend."

No matter who does the diagnosis there is no effective additional help in mainstream schools. The reasonable adjustments the main ASD charities recommend are either easily done but ineffective like sitting away from the door, or impossible and unhelpful and sometimes a bit dangerous like letting the student walk around the school fields to calm down.
And having a TA is too expensive and is often counter productive. I had 50 students with a diagnosis of ASD in a school of 800 and at times fewer than 10 TAs. The maths doesnt math. Also TAs are not magical beings, many secondary students dont want them as it makes them different from other kids.

Wow.

I have 2 children with extreme complex issues including Autism.

We have a disability badge for the car and one recieves PIP and other DLA

My neighbours would probably think they are completely 'normal' kids and we are on the fix with our blue badge.

What they don't see is what happens inside the house and inside school. They don't see the school therapy appointments, the dietician appointments for eating disorders, the SARC appointments, the prescriptions, the extreme PDA my son has.

They probably don't get close enough to see DDs SH scars.

What a lot of people don't understand is that some kids dealing with issues mask a lot of it when outside their 'safe spaces' which are places and people. So in front of strangers or mild associates they will be quiet and still, which they mistake for politeness or 'normalness' when in fact its fear, shut down and feeling uncomfortable. When they get back to their safe spaces like school and home it all comes out for teachers and parents to deal with.

Not the case universally of course but a pattern I've definitely noticed with my own.

I can see how people could experience that and think 'well I see Susan regularly heading to school and she looks completely normal to me'

But going from that to the mum having munchausens is a bit crazy??

So, I am, but you can take my word for it or not. I work for the NHS and have friends in the private sector.

And there is benefit for those with an autism diagnosis, as OP says, money being one. I personally don’t have a clue why, but people do it.

I have also seen people with actual Munchausen declare their child bedbound and spend the rest of their lives ‘caring’ for them… why? No idea, but people do.

I’ve been through the NHS diagnosis process 4 times with my family and several times privately professionally as an evidence provider- how? Because I have not seen how being “clever” gets you a diagnosis.