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 ?

Thanks will look through it. Really don’t get fii including autism as it’s not an illness.

I don’t think there is some big conspiracy to prevent children from being diagnosed with learning difficulties.

Who would even gain from that? Who walks away with more money in their pocket on the basis of fewer diagnoses?
Nah.

Schools / local authorities / health services are often made into ‘bogeymen’ by parents who need somebody to fight.
In reality, the system is just shit.
Not conniving and manipulative, just shit.

All there is to see here is valid safeguarding information, it isn’t the reason why the wait for EHCPs etc is so long.

The problem is that ASD diagnosis isn’t as clear cut as a medical diagnosis.

If you treat a child as though they lack social skills - their social skills don’t develop as well. If you tell them they’re different / less capable than their peers, they become anxious and withdrawn. If you insist they need ear defenders and will only eat beige food - who is going to feed the child curry to test your theory? And when they taste curry for the first time after a lifetime of bread and chips, what child isn’t going to cry?

My point is that a parent who is determined that their child has autism (for example) to the point of fabricated illness / MBP, is essentially abusing their child, and the symptoms of this abuse can manifest very similarly to autism. It’s very tangled and messy. And yes it is rare. But it is important to know about, because that 4 year old child with delayed language and who will only eat jam sandwiches rocking silently in a corner will be left to ‘stim’ / fed more jam sandwiches if they are thought to be autistic, instead of seen as a victim of abuse. It is very serious when it happens.

I think there's some crossover in how these things are seen by the average person, regardless of specific differences. Some geographical areas definitely do treat ADHD and the like under the care of the mental health nurses.

For example, a child at school with special needs might be previously have been 'statemented'. This literally came with extra funding and treatment that was specifically 'additional to or different from' the norm. Now, an EHCP replaces this in most boroughs. Education, health and care plans can cover physical medical issues like heart problems, mental health issues, emotional difficulties, hearing problems, speech and language delay, neurodevelopmental disorders etc..... and mean access arrangements ought to be provided.

Autism and ADHD are definitely covered by this and with people becoming more aware of their existence, they might have been included to point out that three conditions can be fabricated as well as (more easily than?) typical physical ailments.

Precisely because 'health' isn't in the remit of your average teacher, who is qualified to comment on the child 'educationally', manipulating this area could be a way parents seek to get attention or treatment they want.

The advice though is about suspected induced illness, which is a form of child abuse that might have been flagged up through symptoms and disclosure from children, not everyone seeking support. Teachers are expected to notice changes or concerns and report them, even if it turns out to he nothing.

We had one gem of a class teacher (and an ex-SENCo to make it more infuriating) who decided that my daughter's diagnosis of many year's standing for dyspraxia (with scores at the 0.8th centile for the level of impairment she had in some motor coordination tasks) was just made up and she just wasn't trying hard enough. This child has the most formidable level of resilience you would ever hope to encounter - I'm in awe of how tenacious and determined she is and just what she accomplishes.

The disbelieving parents thing, and particularly talking down to mothers is absolutely fucking rife - I've lost count of the number of times the tone has changed dramatically when I've taken my own kids to appointments (particularly for ASD which one has a confirmed diagnosis of and the other one is waiting for) and they've learnt my professional background and all of a sudden my opinion is miraculously worth something and I'm believed.

Contrary to what some on MN like to believe - it is fucking TOUGH to get a diagnosis of ASD (even privately)... hell the amount of clinical justification I have to provide to get one of my own patients onto the ASD waiting list (managed by a colleague of mine!) is blooming draining to go through - let alone as a parent!

I get so pissed off with parents' knowledge of their children being belittled and essentially mocked by professionals. I work with a lot of parents of adult children with LD - and the amount these parents know about their children's behaviour, their triggers, their tiny communicative quirks - it's a goldmine of information. Yes, sometimes things aren't as well-handled as they could be, and sometimes you have difficult situations being made worse by how parents are responding - but start from the premise that parents love their kids, that they're the most important person in the world to them - not from this default that some (in both health and education slip into) that they're the enemy.

And as for FIL - I think I've possibly encountered ONE case which could have been considered along those lines - and was also probably parental anxiety about a condition that could be comorbid with a diagnosis the individual already had.

fuchiaknickers · Today 11:17
Nurserypractitioner · 16/08/2023 21:11

Even if parents do push for assessment and their child turns out to not have ASD or ADHD it doesn’t mean their intentions were to deceive / FII ?
Show quote history
The problem is that ASD diagnosis isn’t as clear cut as a medical diagnosis.

If you treat a child as though they lack social skills - their social skills don’t develop as well. If you tell them they’re different / less capable than their peers, they become anxious and withdrawn. If you insist they need ear defenders and will only eat beige food - who is going to feed the child curry to test your theory? And when they taste curry for the first time after a lifetime of bread and chips, what child isn’t going to cry?

No my daughter became anxious and withdrawn and then suicidal and Anorexic because she didn’t know why she was different and and couldn’t understand why she struggled with things others didn’t. She masked even more in school which made her even more ill. Many children with autism are entirely different at home. I was dismissed over and again.

Her autistic brother had every veg and cuisine given to him but he can still only eat beige dry and would go to bed hungry rather then eat other foods.

Both are now late diagnosed in late teens and hoovering up services as very ill. Accusing me of safe guarding issues on top of everything else would have finished me off which wouldn’t have helped anybody least of all my children.

Nobody wants their child to be autistic . To be frank I see far more parents refusing to pursue a diagnosis when it has been suggested which is far more damaging as support is withheld. Why is that ok?

And yes the talking down to women and mothers is huge in CAMHs and the NHS is huge. I’d often insist my husband dealt with some things and made calls because the reaction and outcome was soo different. We were treated far more seriously. I’ve come across so many in support groups who have experienced similar.

And it was in my daughter’s Ed psych report, autism report, EHCP and other paperwork from her psych that lack of provision and understanding re her SENs throughout her school life have contributed to where we are now. So actually several overdoses and hospital admissions later really the safeguarding wrongdoing accusations should be laid at the door of previous ill informed schools we’re ignorant in how neurodiversity can often present in girls. I have a friend whose DD’s Senco has said autism is unlikely because she can show empathy.😳

Thankfully my daughter's SENCO takes me seriously when I say something - for some reason the combination of being a qualified (but inactive) teacher, previously having marked SATs for the year she's in and being a SALT... tends to get you heard a lot more than it should be. Plus she's generally just a good egg and we tend to help each other out.

We get nothing other than in-class support as a result of diagnosis - it's not why we went for it. We went for it so we have it as a way of explaining to the kids what they find hard and why, and so we can work out how to change it. I've got a fuckload of trauma from being undiagnosed through childhood and young adulthood and being expected to mask (and inevitably doing that poorly) - I do not want the same for my kids. Not an "excuse", not a way to justify shitty behaviour or being unkind to others (my daughter who IS diagnosed is the most kind-natured child you would ever meet - to the point of being a pushover at times) - but so they understand that, in the game of social interactions - they're stuck trying to play a game of chess, with a monopoly set with no copy of the rules and half the pieces missing!

I don’t know if I’ve missed some posts of yours - have you actually been accused of fabricating illness? Is that why you are using yourself as an example?

I am not saying, and I don’t think the safeguarding network is saying that all parents who seek diagnosis for their children are fabricating it. Not all, not even most, not even just a minority.

It’s a tiny minority. BUT when it happens, it is serious and it is VERY important that people are alert to this form of abuse.

Yes, some patents DO want their child to be autistic. They are not normal parents, they are psychologically ill. Like the parents that torture and murder their own children. We don’t know how their minds work - but that doesn’t mean they don’t exist.

These parents thrive on the attention of having a ‘disabled’ child. They don’t toilet train their child. They don’t teach them to use cutlery and feed them inappropriate food. They don’t speak to their child properly, and encourage behaviour that they think will attract attention, pity and support. They may keep their child in a pushchair instead of allowing them to walk, the may refuse to allow them to go to school.

As I said earlier. Imagine for a moment a child who is born without any neurodiversity, brought up in such a way as their development is stifled. It is cruel beyond belief.
Sometimes the parents are aware of what they are doing and sometimes they are deluded through being mentally ill themselves. They will swear that they are ‘fighting the good fight’ for their child, just like so many others.

These parents exist. They are among you. Their children are the least likely to receive support because everyone who sees them will believe the parent’s explanation for their presentation. They know no different and they suffer in silence.

When talking about safeguarding, the first thought needs to be about the CHILDREN this guidance is designed to protect. Not the other parents who feel defensive. It’s not about you.

Not accused of fabricating but my concerns were consistently ignored so one can only assume that the primary school thought I was talking bullshit and that is one step away from being thought of “fabricating”. One assumes now I would be accused of fabrication and have been highlighted as a safeguarding risk which is ludicrous.

All these so called parents doing what you say. Where are you getting the figures for this?

“These parents thrive on the attention of having a ‘disabled’ child. They don’t toilet train their child. They don’t teach them to use cutlery and feed them inappropriate food. They don’t speak to their child properly, and encourage behaviour that they think will attract attention, pity and support. They may keep their child in a pushchair instead of allowing them to walk, the may refuse to allow them to go to school.”

My friend took her autistic child to school in a pushchair for a long time as it was the only way to get her there. She had tantrums and ran off. Same school didn’t believe her and she had another child already severely autistic and diagnosed . Toilet training can be harder if a child has autism, you can’t just make it happen. And dyspraxia can often be part of a neurodiverse profile which makes using cutlery hard.

So if a child is masking all day and behind on skills but parents are saying they are sure behaviour at home and other struggles signifies possible autism are you saying they need to be a safeguarding risk? How do you encourage autistic behaviour exactly? I had to frogmarch my screaming child to school
some days, would I now be accused of encouraging the behaviour?

@3nchant3d. I don’t think you understand the point I am making.

I know all about autism and neurodiverity in general. I know all about masking and toilet training and cutlery etc.
That is exactly why I used those examples.

I repeat: I am not talking about you, or your friends. I am not talking about children with autism.

I am talking about children who are being abused, often to the point where they show unusual and/or behaviours, which can look like autism to the unpractised eye.

Like those parents who shake their infants and reports say they have “injuries such as those sustained in a car crash.”
They look like they were in a car crash. In actual fact the damage is due to abuse.

Same difference. Serious cases of fabricated illness can sometimes seem autistic to the casual observer, but the damage is not due to abuse.

Professionals will be able to spot the difference of course, but it it a good idea to highlight this particular form of abuse because it is especially likely to be missed.

Neurotypical child rocks in a corner and cries inexplicably = people are likely to be concerned and ask further questions.

allegedly autistic child rocks in a corner and cries inexplicably = people are likely to accept it.

I assume you work professionally with children @fuchiaknickers (although you can't spell. It's fuchsia).

If you believe there is a tiny tiny minority of parents who neglect their children to such an extent that they present as though they are autistic, what do you do about them? Presumably you report them?

And while there may not be a conspiracy among schools and professionals to downplay children's difficulties, there are schools who discourage 'difficult' children and make it very clear that they have no intention of supporting any assessment process. I know, because my child was at one for a while.

But children are classed as neurotypical until they get a diagnosis. Mine were. Hoards of parents are disbelieved prior to diagnosis.

It’s a tiny minority. BUT when it happens, it is serious and it is VERY important that people are alert to this form of abuse.

At the moment most parents I know with autistic children (and to be fair those I know tend to have “high functioning” children like mine) have faced distrust and obstruction when trying to seek help - presumably because so many teachers/support workers are convinced our children are, as they repeatedly tell us, fine.
Our children are being let down and damaged by this approach, we are being damaged by this approach.

Are we acceptable collateral in order to catch out the tiny number who are trying to work the system?

Surely if, say, a teacher has concerns their best bet would be to help, not obstruct, because however you look at it that child still needs help - either their parents are telling the truth and the child needs support, or they are not, and that child needs support.

This has been going on for years. Surely it’s about time this approach was called out and stopped. If anyone cared about autistic children it wouldn’t be happening.

I know all about autism and neurodiverity [sic] in general.

You really don’t sound like you do.
You sound like you have a detached view of it - someone who maybe teaches autistic children rather than being the parent of them.

Professionals will be able to spot the difference of course, but it it a good idea to highlight this particular form of abuse because it is especially likely to be missed.

So teachers should be helping to present these cases to paediatricians who are able to spot these differences? That’s a good idea.

So you agree they should stop obstructing support and gatekeeping assessments?

Unless teachers have concrete evidence of abuse in these cases they should be forwarding to paediatricians. Not stopping anything from happening at all, which is what happens now.

Well I’ve said my piece, take from it what you will. I hope some will take from it new information about a little-recognised form of abuse.

If you only want to hear from other parents who agree with you, I’ve nothing more to say. Off to make dinner, have a good evening.

Re cutlery I told them repeatedly that we ate at the table and it wasn’t normal that she could bend her hands backwards and it was really making her struggle with holding a pencil, cutlery etc. She finally got her OT after the initial diagnosis of dyspraxia at 10 with a group of very young boys. Really great for her self esteem and far too late. Years of primary struggling with fine and gross motor but because she didn’t present in school like ND boys, did academically ok but nut anywhere near her ability and sat like a mouse until she got up the road and exploded all the pressure from masking all day we were ignored. Terrifying that now it would be used to say we were a safeguarding risk.

That’s not what I want at all, but you seem to be saying that the current approach of dismissing worried parents across the board is necessary because some children are abused, and I fail to see how this helps anyone?
All this approach means is more children let down by a crappy system 🤷🏻‍♀️

Fortunately parents with autism are not subject to child in need and child protection plans in such a discriminatory way as parents with learning disabilities are. Now that’s something that never gets discussed properly.

When I say “outside of the norm”, I meant so far abnormal that it is to the detriment of the child and/or adult. I don’t mean people who might deviate from the social ‘norms’ which are difficult to quantify anyway due to religious, cultural and psychosocial differences.

They shouldn’t have used this example because people have run with it. They’re not saying every case is FII, they’re saying “if something looks concerning in a parent seeking a diagnosis, consider MAYBE if you’re needing to refer on.” It’s not a diagnosis of FII, it’s not a suggestion of it. It’s looking for a pattern. Not a one off concerned parent pushing for a diagnosis but an ongoing pattern of behaviour that may warrant a consideration.

A lot of people want that label because it helps explain the way the child processes the world.

But that isn’t what is being said. Concerning behaviour is apparently struggles with knives and forks, restricted eating, parents apparently triggering behaviour……All the kinds of things most of us with ND children who mask struggle with prior to diagnosis.