To think this guidance on the safeguarding network is awful ?

[Nurserypractitioner]

Perplexing presentation and FII :

It states in the guidance for schools to basically be suspicious of parents -specifically mothers seeking a diagnosis of ASD or ADHD and then goes on to say about parents who think their child may need an ehcp??!!

A lot of children with ASD mask at school - so if an educational setting see a different presentation that’s probably due to masking yet they are saying it’s potentially a safeguarding issue and could be indicative of FII??? AIBU to think this is dangerous advice ?

I think the problem with 'what if' is the risk of wild goose chases. This country isn't doing anything like enough for the children we already know are being harmed.

The whole safeguarding area has become a mess due to a proliferation of guidance at the same time as a reduction in resources.

What wild goose chases? The 'what ifs' are reason to record so over time you build a bigger picture. 1 incident: non-event. Multiple instances, whether that be bruises/hunger/uncleanness/odd behaviour from a parent: build a profile of the child's life so you can get support from the right people.

We see an awful lot of neglect through poverty where I work. Those families don't need SS referrals, they need food banks, someone to help with filling in forms to ensure they are claiming what they're entitled to and general support. A child saying they're hungry 1 day means nothing. It's the continued presentation that would trigger these actions. No wild goose chase.

In FII, it tends to take years, and I mean years to see the bigger picture. I've only seen 1 case and although there were concerns recorded from Reception, it wasn't until year 4 there was enough evidence to make a referral. That's not a wild goose chase. That's a watch and wait scenario.

No one would take a 'wild goose chase' i.e singular event, seriously as a referral unless it was an extreme event.

The thing is though, even taking into account the safeguarders and the what ifs, so many parents of undiagnosed ND children are unnecessarily traumatised because of the actions of teachers, support workers etc - all of whom should have a better knowledge than they currently do (a very Rain Man perspective of autism). I mean, we’re over 30 years from that level of knowledge - why isn’t anyone held accountable for their actions that actively damage and traumatise vulnerable children?

So who needs to be investigated? The parents seeking help? Like I said, I don’t know one family whose child wasn’t diagnosed in the end, after unholy waiting times, yet most parents I know are traumatised to some degree or other by the journey up to that point, directly linked to the adults who are supposed to be supportive.

So why aren’t these people - the teachers, the CAMHS workers, the behavioural support team (whatever they’re called now, as in my area they change name and “reshuffle” every couple of years so there’s no accountability as “oh that was the old team”, even though they’re the exact same people in the exact same roles), held to task for their actions? Why aren’t they being investigated?

IME once to the right place for diagnosis - the paed, psych, SALT, OT etc, you’re away, they understand the issues and have great sympathy. But why aren’t they saying anything to those people routinely making parent’s lives worse?

Several years ago there was an OFSTED investigation into SEN in schools, which produced pretty damning results, but I’m yet to see any sign of schools trying to do better? I know they’re underfunded, I get that, but that doesn’t excuse the shitty way SEN pupils and their families are treated. At this stage it’s looking like a deliberate ploy to deny support or to traumatise these children so much that their parents move them or home educate them.

So once again - who needs investigating?

But it doesn’t say anywhere how rare FII is - it just mentions things like SEN parents pushing for support so teachers may assume FII in more cases when it isn’t that ?

i do think as well that in some cases not all obviously when there’s a SEN child there is sometimes a SEN parent , in the 80s and 90s things like asd weren’t well recognised understood or diagnosed and those parents remember their own struggles and don’t want that for their child - they then push for diagnosis and support but if they also have ASD then their presentation is going to be a certain way ans that can be misinterpreted? Attention to detail, seeking second opinions, complaining if necessary , just coming across a certain way when there’s no bad intention. Just desperate to get the support they didn’t but potentially their actions and differences due to being ND will be misinterpreted

I think that’s a big part of the problem.
Autism is hereditary, autistic women are so often misdiagnosed with personality disorders. It’s not rocket science to see this is a problem.

I didn’t know I was autistic until going through the process with my son. Adult services at the time had shorter waiting lists so I was diagnosed before him.

I’ve been looking more into FII and a lot of the alerting signs could equally be just a diligent possibly ND parent covering all bases and seeking second opinions etc . It’s quite worrying I think the extract posted above by another poster from a book highlights this - I understand that FII is rare and guidance is needed but there’s a huge overlap with other things and they are going to cast the net wide to catch the tiny proportion of true FII and in the process catch a lot of ND parents with SEN children which then causes them trauma and arguably the emotional abuse they are trying to protect children from but the perpetrators will be misguided professionals

This.

But in practice it so often does, so I’m sure you can see the problem something like this causes.

Very worrying.

I fought for 5 years to get an ASD diagnosis for DS, then another 4 years to get him an EHCP.
School questioned my parenting constantly, even though his younger sister had no issues. Even with his diagnosis they said he was "fine" at school and because he's academically able refused to help with his EHCP.
It took for him to become suicidal at 11 years old, due to constant masking, that they finally decided to take us seriously.
I'll never forgive them or the Local authority for what they put him though. It nearly killed him and broke us all as a family. DH had a breakdown a year later, then I also did a year after that. DD has been left with Ptsd and OCD because of the things she witnessed every day from DS. His meltdowns lasted hours and hours after school, he tried to jump out of windows, out of moving cars, stab himself with knives. He physically attacked me every day, luckily we kept DD safe from the physical attacks but she saw and heard more than a child should.
The local authority ignored all of this and listened to school saying "he's fine here".

He finally got into a SEMH school and has just finished Year 11 a different child.

I’m so sorry that sounds so so awful 😞

It seems to be that FII is incredibly rare yet SEN children needing diagnosis and/or support and not getting that are incredibly common - and this guidance will only worsen that problem, plus there’s the potential to classify some cases as FII when they are not. Yes there needs to be guidance but it needs to balanced and regulated as this is not right.

If you know a few mothers that have done that then you know some really clueless mothers.

That isn’t how benefits work, a diagnosis doesn’t mean you can claim any benefits - no diagnosis has 100% claim rate, They’re all based on support needs and have to be evidenced.

DLA is an intense process - the form is lengthy , the assessment time is long, they check everything with medical professionals and supporting evidence is needed and a statement from someone who knows the child - it’s not an easy way to get extra money !

I know...

But also, people with Huntington’s, cancer, Down’s syndrome, people who’ve lost limbs - can and are refused it.

There’s literally no diagnosis that guarantees benefits.

I know a woman who had all her benefits stopped because she claimed DLA under the special rules and her child took longer to die than was predicted.

Disability benefits are not something just handed out because of a certain diagnosis - they’re ridiculously hard to get, so knowing several people pushing for a diagnosis for benefits is just comical.

At the moment I see the systematic skew towards not understand sen so this will make that slew worsen

This was my first thought too. New headway is being made into how females present differently to boys (whom the diagnostic criteria is written about) and ASD numbers are increasing. Of course there is a cost element to this, but how much money would be saved longer term by avoiding families reaching crisis point because their undiagnosed ND kids fall apart in secondary school?

I have put my DD forward for an assessment as there are so many behaviours we see at home which we can struggle with, but since she is academic and has high people-pleasing tendencies there is no way school would pick it up. I was so similar to her in many ways, (I'm going for an assessment myself), except my whole life I have been told I'm too sensitive, too emotional, lazy, and can't apply myself. I have been gaslit by medical providers so I come across as very anxious because I'm so used to being treated like a hysterical woman. I'm probably the exact type of person this 'safeguarding' advice is about.

Sadly I have met a great many parents who believe / argue that their child has all sorts of needs and difficulties, and unfortunately they are wrong and refuse to listen to anyone who tells them otherwise.

There are parents who have decided that the teachers and doctors and psychologists and social workers and health visitors are all wrong, and insist that their child has a problem, ignoring the fact that being a parent does not qualify them to say this. It can be extremely damaging to a child’s development to be treated as though they are less capable than they actually are.
These parents are (often unconsciously) acting this way to meet a need of their own, not the needs of their child.

Not ALL parents who are seeking diagnosis or an EHCP of course. A very small minority.

Maybe.
At one point though I was considered “that” parent, as were many parents I know. My son masked, the people who could have made a difference (the teachers, the behavioural support workers, some family) preferred to believe that I was the problem.
Meanwhile my son gathered up reports (OT etc) that all flagged up issues, all of which were ignored, he showed enough issues in school for his teachers to struggle - again ignored and/or put down to poor parenting.
All this went on for years. It damaged my son, his siblings, me and his father, my relationships with some family, my ability to access any support from anywhere.
Even if there are a tiny minority of families faking it (yet to see any evidence of this though), how is anyone involved going to be helped by withholding any support to prove a point? As a bare minimum you’d start the ball rolling to get the child assessed (multi-disciplinary assessment, so no chance of a diagnosis just on the parents say so), and you’d offer some support because clearly something’s going on in the family that needs help.
At the moment too many cases are treated suspiciously, which leads to long term damage. This should not be the first choice action taken by anyone. The fact that this is the typical action, particularly with children who mask, tells us everything that we need to know.

And maybe let’s address the fact that schools are no longer safe places for many children.
The way classrooms are set up, and the pressure put on children from a young age is creating issues with children that 30 years ago would have managed.

Rates of autism diagnoses went up in 1994 because of a criteria change in the diagnostic manuals.
I see plenty of children who would have coped with school the way it used to be - more formal classrooms, no exams until older, no pressure to meet certain targets, no laminated shiny stuff on every available surface (including hanging from the ceiling), no electric devices that constantly buzz or flicker.
We have a generation of youngsters, diagnosable SN or not, that have mental health issues. This could be fixed.
The government and every single person unquestioningly following their guidelines have caused this, or at the very least exacerbated this, and because the numbers of SN are a problem to them they do whatever they can to absolve themselves from either supporting, or from being accountable when it all goes to shit.

I’ve been down the ASD pathway with my kid. I’m pretty confident I could have got a false diagnosis if I’d wanted to.

First off: My kid was very quiet and withdrawn throughout the process. With the exception of a single game of cards (for which I was present), he barely interacted with the professionals over three appointments, in the course of several years.

By contrast; I spoke at length every time. I filled out a very long form. I had a detailed follow us conversation about what I’d put in the form. By necessity, the psychologists had to take my word on a lot of stuff.

I was a genuine parent without a preconceived idea of the outcome I wanted. And I was scrupulously honest. Because I wanted an accurate medical opinion.

But if I wasn’t…. The symptoms of ASD are very well known and I’m pretty sure I could have given the “right” answers with some research.

My child’s withdrawn behaviour was due to social anxiety and communication difficulties. But what if, instead of being nervous of the professionals, he was afraid of me? What if he thought I would punish him for saying the “wrong” thing? Wouldn’t that have looked the same?

At some point during the diagnostic process, I claimed DLA.

For this bit I had a bit of a head start, because I was already experienced at filling out forms and I knew the sort of thing to write.
But the DLA Regs are hardly classified information. Anyone can look them up and work out what responses are likely to result in an entitlement.

The DLA passported me to Carers Allowance and the Disabled Element of Child Tax Credit. All of a sudden, I’m financially better off as a stay at home Mum to a disabled child than I was as an “ordinary Mum” with a part time job.

Plus I’m special, I’m bravely sacrificing myself for his welfare. Locked in a struggle with the authorities to get his needs met. Heroic, even.

You can see why that would be attractive to a certain type of personality.

I think a lot of people look at what we have to go through; filling out forms, talking with professionals, applying for benefits, appealing EHCP’s and think “That was all terrible. Why would anyone put themselves through that if they didn’t have to?”

Without realising that for someone with Munchhausen’s by Proxy, it isn’t terrible at all. Its like their hobby. They’re enjoying the drama.

Have you Fuchiaknickers? What job do you do? Because in my experience as an AHP, I see many more parents deny an issue than I do demanding their child has SEN. In fact in my many years experience it's rare I find a teacher who can recognise the 'quiet' autistic child, who'll meekly sit and quietly struggle, often with little digs and snide comments from others who should know better, and then their parents will see the fall out at home which school have failed to pick up on, honestly most teachers wouldn't recognise a child with SEN unless said child literally and metaphorically punched them on the nose.
That's not the teachers fault, it's the almost nonexistent training teachers have when it comes to SEN.
If a child can't access the curriculum without help then either that's poor teaching or a child with SEN.
A number of children will hold it together during school hours, but can't hold it together once home.
Best way I can explain it, is like this: you've been told you are going to do a 25k run, and your going to start training for it. You think that's okay, because you can really envisage how far 25k is, so cool it's doable, after all you trust the person whose told you this, so you don't have any worries.
You start to do the training, it's quite gentle, you still trust the person, other people in the training group are keeping up no worries, so you just need to put a bit more effort in, that's okay, because you are just managing. But you are a bit tired and grumpy when the training is over, and you'd quite like to be left in peace....
So as the days progress, whilst the rest of the team progress, your finding your just lagging behind more and more, maybe you have undiagnosed asthma, maybe you don't sleep so well, so your energy levels aren't as good, maybe you weren't as fit as the group to start with, maybe you're training with an elite set of runners, and your just average, lots of variables which you don't think about, you just know the others are doing better. And no matter how hard you push yourself, you just can't compete at their level, as the difference becomes greater, you start to lose confidence, you start to doubt your trainer, you think actually I don't really want to do this anymore as it's becoming mentally and physically really quite uncomfortable, you've tried, tried with your heart and soul, but no matter how hard you try you just can't keep up.
So you go to your coach and say you want to quite. At which point they tell you 'no, this is how it is, you might be uncomfortable but tough luck, this is your life now'.
You now are feeling frightened because no one is listening, you're too tired to put it into words at the end of the day, so your options are: refuse to go to the training sessions; withdraw into yourself to protect yourself from further suffering; go into fight more, because you're now at the end of your tether.

This is what school is like for many, many children. Now tell me the teachers know better than the parent.

And not only are we being led to believe that teachers know best but teachers themselves are being told to ‘challenge the hierarchy within health’ so they are being told they know better than medical professionals and even consultants I presume - those who ARE qualified to diagnose SEN???

Wish we could edit posts 'can't envisage 25k, and quit not quite!

Okay let's take your scenario to its conclusion @unlimiteddilutingjuice and say that your child had been diagnosed (although I think you're implying that you could have got a diagnosis if you'd wanted one which I don't think is true but lets put that to one side), what additional dramatic interventions do you think you would have got?

It's none. Literally nothing. You can join support groups online or in person but you can do that even if your child is completely invented. But I don't think that gives the narc attention people with FII crave. It's not very special to be one of a group.

There are much more satisfying ways of getting a FII fix.

And yet if a child says they’re trans, hide it from the parents, and go all out to transition the child at school.