to ask how common you think parental refusal/denial of ASD/SN is? ...

[Bebobib]

...and could it been seen as a form of neglect? Only asking because I have suspected for quite some time now a child under my radar has not been assessed due to parents refusal and or denial or SN.

'Basically everyone is on the scale'

I think you are misunderstanding what a spectrum disorder is

I do wish people would simply talk about asd more. I think there's a huge misconception about it- people either think of rain man or the curious dog incident genius type or the old stereotype of someone in a padded cell banging their head on the wall! Most people with asd are somewhere in the middle although yes you do get the two extremes. I think parents who don't get their children diagnosed and talk about asd more are doing everyone else with asd a disservice as the world is never going to become more accepting and understanding if people don't ever get to meet more dc in the middle of the spectrum.

"I work with a child in a mainstream whose parents are quite happy for him to be autistic in order to obtain financial benefits but won't allow him to attend sessions at the SEN unit which would benefit him greatly in case he is "labelled". I am not sure if they are in denial or not"

Haven't read the whole thread, but I found this comment really quite awful.
Autism must be diagnosed, going through a lengthy, traumatic process. If they claim DLA it is to help with the raised costs of having a child with a disability.
They may have many reasons for not wanting their child in the SEN unit, but too often in these cases there is a "them and us" situation between parents and teachers, with teachers often feeling they know best, some dismissing and minimising the child's difficulties, others not putting strategies into place then struggling to cope with the child. In most cases the parents are to blame, for one reason or another, according to the child's teachers.
So forgive me, Belinda, for taking your post with a massive pinch of salt.

I've seen it from both sides. Ex refused to accept DS's ADHD/Dyspraxia diagnosis, or to ever read up about them/do anything that would help. He liked to blame it on my parenting, or deny it whilst constantly complaining that he didn't listen/constantly ran around/forgot things/was really clumsy!

One of the most upsetting parent meetings I've had as a teacher was when I discussed (gently) that I would like permission to refer a child I worked with to Educational psychologist as he was displaying many ASD traits and I really wanted to make sure he got the right support as he got older. Parent was shouting at me that "You people just want to put everyone in a box and stick a label on them" and was very, very angry that I was raising this as they'd been through this since nursery with staff raising concerns. Child was now P6, so nearing Secondary age. I'd been prewarned that it wouldn't go down well, but had to try. Child went to secondary, and finally parents agreed to assessment.

I completely empathise with how they were feeling, but in order for their child to get all the support he needed/was entitled to he needed the diagnosis on paper. As his behaviour at home was very different than in school it was hard for parents to accept.

Phil re 'In most cases the parents are to blame, for one reason or another, according to the child's teachers.'

I have a teacher friend on fb. She frequently shares "back in my day naughty children would have gotten a smack, not a diagnosis" type memes

If i knew where she worked (she keeps it a secret) i'd report her

I've only just noticed the post about the family claiming dla.

You don't need a diagnosis of autism to claim dla. You don't need ANY diagnosis to claim dla, it is awarded based purely on the child needing substantially more care than an average child of the same age.

I highly doubt any parent would put their child through autism assessment to claim dla when they don't need to.

We claimed dla for our son aged 2.8 when all we had was a referral to the paediatrician. We claimed because I was unable to work due to his care needs and we desperately needed the money and carers allowance just to survive. He was later diagnosed with severe asd and learning difficulties - we didn't need to prove that to claim dla though.

"With ASD -- basically everyone is somewhere on the scale."

Absolute bollocks. You need to be autistic to be on the autistic spectrum.
Perhaps you mean the scale of humans? We're all on that. Either way, you don't sound like you know a lot about ASD so perhaps you need to learn a bit before you post, so you don't risk making ignorant comments.

Another thing is that when you have a child with difficulties, I've found that many people are so conflicted about their children because their family and friends constantly bombard them with "he's just being a boy" or "he needs more exercise" etc, which is very unhelpful. We stuck to our guns through this, but most family members still think we're being dramatic or attention seeking or something. Some people will believe their families and carry on until they have to acknowledge that there is a problem.

And yes, DLA is needs based, you don't get a diagnosis and suddenly end up wealthy because of it. I think statistics prove that families with DC with disabilities are more likely to be very poor than rolling in it.

People do go into a form of denial with other disorders that are more visible. They just can't deny it's there. Children with visible disabilities, even today, have been abandoned in hospital, patents just,walking out without them. They can't deny they have ut, so it's easier to walk off. I suspect they probably tell people they had a stillbirth or similar.

The thing also with add etc is it can be hard to tell whether it's a few quirks or whether it goes over the invisible line into diagnosis.
I've wondered about one if mine for years. If a teacher or someone else suggested assessment I'd go for it straight away.
However when. I've raised it, I've got surprise and no from even experts in the field. They're no where near severe enough to push for it, and it doesn't majorly effect them, so I'm not too worried.
But if I really didn't want a diagnosis then I could easily convince myself it's a little quirky only.

has not been assessed due to parents refusal and or denial or SN.

It’s quite common. Not universal, but common enough.

The denial of the need for treatment, to me, raises considerable for the child's care and future prospects.

And in a few months or years time they may well decide to get help for the child. It’s not all or nothing forever. There is no hard-and-fast, totally objective diagnosis for most of these conditions. It is a matter of judgment. Parents see different aspects of their children and make different judgments. As time goes by they may see things differently, especially if the gap with their child's peers does start to widen. And even when evidence for ASC is clear, denial is a stage that many parents go through. Parents do need time to come to terms with it. Some seek as much information about their child and the possible conditon as possible; others shut down about the condition for a while and just try to see "their child". You can have no idea how long that stage will take.

could it been seen as a form of neglect?

That is the wrong question. I've heard this from well-meaning professionals before - but never from someone who has experience and training in SEN/SN. You asked the right question later – how to help the child? Well unless you know this is just one part of a wider pattern of abuse or neglect, then accusing a parent of neglect is not going to help anyone.

I suppose there is not much that can be done to help?

You do what you can for the child without a formal diagnosis. You can find out from the people who are experts in SEN/SN as much as you can about how to manage a child with these difficulties and how to help them develop their social and communication abilities in your mainstream setting. There may be quite small things that make a difference – visual timetables, whatever . Especially, don’t punish the child for what they can’t help. And do try to make sure what information you have about the child isn’t lost in the system.

I feel desperately sad for the child.

This kind of “sadness” can come cheap. It can easily become the sadness of someone who expects other people to do something. The parents are the ones who will be doing what has to be done in future and forever. And they are the ones dealing with the real sadness, right now.

I luffs you kleinzeit with your last point, sadness comes cheap. It does, evidence gathering, quality observations and honest talk is time consuming and difficult. Sadness is useless and often even misplaced, behind closed doors is a happy beautiful treasured child that fits in perfectly that no one is sad for, but they talk about the potential in.

I know a family like this. Their youngest son badly needs some support. They know there is something going on with him (they refer to him as a little weirdo) but nothing ever gets done. He is in school so I hope he will get referred soon but apparently they need parental consent which they won't get. Short of calling SS I don't know what to do about it. It's very worrying.

I've known since DS was tiny that there was something not quite right with him. At toddler group all of the other children would be sitting singing nursery rhymes while DS would be literally climbing the curtains or at the reception desk trying to work the photocopier or sitting on the knee of some random, cuddled in and chatting away like he'd known them for years. The old stereotype of ASD is someone closed off from the world but DS is the opposite, he's too open to it. He seeks constant sensory input, has no sense of boundaries or personal space, and no sense of risk or danger including stranger danger. He frequently goes into sensory overload and will then have a meltdown during which he can be violent to himself and others.

Fighting to get him assessed has been a long and frustrating process. I highly doubt that anyone goes through it purely for access to benefits or as a cover up for shitty parenting - I've seen both of these ideas expressed on this thread and won't quote the two posters who made these comments because their comments are, frankly, bullshit.

Our experience of the assessment process was years of "wait and see" followed by "he'll grow out of it" followed by "some children are simply highly strung". Then we had the early stages of the assessment process during which our parenting and his development were picked apart. Then the school nursing team came along to go over the same things. What are your concerns? What have you tried to correct the situation? How did that work out? What's he like in school? At home? In public? And so on and so on. He was more or less coping at school so alongside this we had school refusing to acknowledge there was an issue despite him seeing SALT for garbled/rushed and repetitive speech and being in the early intervention group for handwriting that was a vague scribble. Then, finally, a referral to CYPS.

It's horrible. Really and truly horrible. I feel like I spend every meeting slagging DS off because we talk about the concerning behaviours. I could write a list ten times as long about all the ways in which he's wonderful but it wouldn't cancel out the myriad of concerning behaviours. I come away from meetings feeling so negative because we've been discussing negative things.

I'm not at all surprised some parents don't want to pursue a diagnosis. There have been times that I've wanted to call the whole thing off, where I'll worry if I'm doing the right thing by DS, where I'll think maybe he is just quirky or high strung, maybe it is my parenting and I'm just a shit mother. I worry about the impact it'll have on the rest of his life, how he'll be perceived by others, and so on.

The reason we decided to seek diagnosis was that he was getting worse with age, not better, and we felt we needed access to the relevant support. If a child is stable in terms of their development (for want of a better term) and coping well with their day to day life, the parents are coping with it all, and everyone is happy then what would the point of seeking a diagnosis be? If their situation becomes problematic in future then they could seek a diagnosis then. It's not necessarily denial to delay it.

I have worked with two people who have aspergers, the type where they are amazingly clever. Sort of on another planet cleverness levels. This is higher education so everyone is alledgedly bright. Both would be in their early to mid forties now.

One guys parents fought tooth and nail to get him in to mainstream school as education authorities wanted him to attend a special school. His parents hadn't wanted him labelled, they were all in denial.

He had an absolutely awful time in mainstream school and was bullied horribly. His interactions at work with others were strained as his behaviours were not always acceptable. I think his parents were trying to protect him but I think it had the opposite effect.

The other guy with aspergers was very open about his diagnosis. It was much better for him because he told people, he had techniques to help him cope and it was accepted that in large group situations he was allowed to walk out to calm down.

I remember he had to leave an inaugural lecture of a new Prof as he couldn't cope with the numbers. He told me he had to leave and he didn't need to explain anything. I just replied fine will give you a run down of the lecture when you feel up to it.

Neither of them had easy lives due to their issues but their ways of coping really made a difference and I totally blame the first colleagues parents for pretending nothing was the matter.

I feel desperately sad for the child.

I saw Citizens Advice to get help filling in a DLA form for DS. The advisor went through it all with me and then at the end said it was "such a shame about DS but at least your other DC are nicely behaved"

I fear quite common - I know of 3 children that were at DD's primary that the school wanted to get tested for ASD and parents have refused as their child was 'just like me at that age'. I suspect that more girls go undiagnosed as people think its rarer in girls.

I've another friend who is refusing to get son tested for dyslexia as she doesn't want him labelled and 'it won't make a difference' to know.

We, on the other hand, had to go against the schools wishes to get DD tested for dyslexia. As she wasn't behind they refused to accept there was any chance of something being wrong. The 'label' really helps - esp as if like DD it means an extra 25% in exams!

I don't know if it counts as neglect...but its certainly denial, and certainly not in the childs best interest.

I think it is important people remember that even with a diagnosis and support, people with asd are still going to have asd. They are still going to have difficulties and may well have unusual behaviour. If a child with asd has challenging behaviour it isn't because they have been neglected by their parents. Acceptance and tolerance are greatly needed.

I can only offer my experience. My DS (aged 6) is autistic, and it was pretty obvious to everyone from a very early age. I was in total denial, and got angry when his pre-school suggested he get tested and thought it was because they were failing with trying to engage him. (Sorry, school). I was angry mainy because some people use 'autistic' as a pejorative. When he was non-verbal (just screamed) i had a bloody woman at a community group snap at me 'what the fuck is wrong with that child? Is he autisitc or something?' So as a parent, even if you are in denial there is something deep inside that wants to protect, and perhaps not having a diagnosis means head in the sand. It did for me anyway. Then DS's very good school at reception suggested he get tested and I sobbed and sobbed and sobbed my heart out. We were very very lucky in that we got a referral very quickly, and when it was confirmed I was totally floored and distraught. But then I decided to empower myself by reading and learning and now I view DS's autism as a part of him, and a wonderful part of him. His quirks are funny, and his obsessive interests are interesting. I have taken the diagnosis and run with it, so to speak. DS is perfect and I do not want him to be any different than what he is.

I was most worried about how DH would react. DH was in denial at first then when he came to understand it, he just said 'Oh, who wants to be normal anyway?' and that is his approach.

We have not accessed 'services' as yet - long waiting lists etc, but also his school is bloody brilliant. They are so accepting and his teacher has gone on courses to learn about ASD (small village school so not alot of experience as yet). They are wonderful. We are very lucky. :)

Oh... also I was concerned about DS being 'labelled' and there being stigma. Until the educational psychologist pointed out that 'he is going to be labelled anyway'. Because he is on the more severe end of ASD. It is pretty obvious. That made sense to me.

And yes to what Poltergoose said. :)

I agree there's a lot of denial involved in refusing a diagnosis. .people do it because they desperately hope all the issues disappear and are worried the child will have a diagnosis then which they won't need.

and also.... the parents may know and may have a dx but they are not neccessarily telling the whole world about it, so to an outsider it seems like they are in denial.

My approach is this - DS's autism is his private business. The people who need to know have been told- teachers etc. That is it. He is too young to understand yet what autism is and how it affects him and I do not think other people should necessarily know before he does. I'm not shouting about it to every random person I come across.