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.

I think it's more common than we want to admit. Bearing in mind that we as parents who have our children's best interests at heart don't want to think that other parents don't think as we do. So if as a parent you want your child to access the best support available etc then surely other parents must think the same?

And it's much easier to deny an invisible disability. If you consider that children with physical disabilities are still fairly regularly abandoned/placed in care/up for adoption, and that 92% of pregnancies where downs is detected are terminated, it is very clear that society as a whole is not yet accepting of disability, and that the majority of society does not want to have a disabled child. If a test for autism was available in pregnancy I have no doubt that the termination rate for autism would be on a par for that of babies with Downs.

And whether we want to admit it or not, diagnosis does bring limitations. The unemployment rate among the disabled is around 82%. That means if you have a child with disabilities they are far more likely to be unemployed than not, it shouldn't be a reason to not seek help, but equally it's something which I have no doubt people do consider when they start down that road.

And let's be honest, a diagnosis isn't a magic bullet which suddenly brings all the support and help that parents should be able to access. Many parents do still see a diagnosis as a label, and with provision for SN in mainstream schools being cut to the limit and access to specialist education no longer being available for the most part, a diagnosis is often just the beginning of a road you cannot go back from once you've headed down it.

What a load of crap Nataleejah. I see Fanjo already dealt with that load of ignorant nonsense so won't give it anymore attention. Also the poster who mentioned that they work with a child who gets DLA but isn't allowed to attend an specialist unit. Maybe it's because they've looked at the unit and what would he available there and judged not up to snuff and not suitable for there child? These places are not nirvana. They frequently get it wrong too. I also despise the DLA doing it for the money! implication.

I agree with all those who say it's mainly teachers and professionals that are obstructive to diagnosis. We got lucky and got an amazing SENCO, who was on the verge of retirement. She said to me "if it's the last thing I do I will get that child his diagnosis and into (named school)". She did both but my son met up with staff at the unit who had little experience of how autism can present (brand new unit) and he ended up being assaulted, labelled naughty, violent and manipulative. This was in a specialist ASD unit. He is home educated now.

This thread has actually fanned up a lot of feelings I had buried about those times. I was just so glad to get him out and away from that school that I never did all I should have to bring one particular teacher to account. I may write a letter to her. I feel that her judgment of my son should not be allowed to stand without being challenged.

Their not there

Yes the doing it for DLA gets my goat too.

If I wanted to earn some more money I'd do it in a better way than constantly cleaning up poo and pee and being up all night every night tbh.

PolterGoose, your 9.04 post was spot on. In fact I've saved it for use against those who think I've "labelled" DS5 as he comes across as very able.

It took 2 years to get a diagnosis for him. And yes, even without the diagnosis he would still have ADD and ASD, just teachers would have counted him as lazy and a dreamer, with weird obsessions and no friends.

And I don't even claim DLA for DS5 so I haven't "done it for the benefits"

I don't even know if I should - my other DS is more severe and I claim it for him but Ds5 is so much easier and our lives are ASD normal I forget what is normal for NT children!

I have worked with two people who have aspergers, the type where they are amazingly clever.

Early to mid forties? Counts on fingers – so they’d have been children before most people (including most teachers and psychologists) were even aware of Asperger’s. And when there were almost no special schools which could have supported both SN and academic ability (there are still too few), and at that time little or no support in mainstream schools either.

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.

Even if they hadn’t been in denial, at that time his education would still have been Hobson’s choice.

The other guy with aspergers was very open about his diagnosis.

People can get bullied for that or they can see other people being bullied for it. Knowing when to be open and when not can be a difficult call. I am glad he has found a strategy that works for him. It sounds as if this other guy has been lucky in all several ways.

At the age of forty it is not reasonable to “totally blame” his parents for how things have turned out.

I love a good thread judging the parents of DC with SN

Some of the posts on here (particularly Belinda) are just hateful.

Hi all - there are a few posts on here that have been brought to our attention.

We'd like to take this opportunity to remind everyone of our This Is My Child campaign which aims to bust the myths surrounding children with special needs, and in particular, myth number 1, "behavioural disorders are just a fashionable excuse for bad behaviour or poor parenting".

Thanks to those who reported

Good post polter.

I am of the age where an autism diagnosis meant children who were severely disabled and nearly always non verbal. The spectrum of who has autism has widened considerably over the years. So I am not surprised if not all parents are aware of that.

DSIL's nephew is autistic. Her brother, the little boy's Dad, refused to accept there was any reason for concern until his son started school. Everyone else in the family knew there was an issue. It took his new teacher a day to realise there was a serious issue. His Mum has been distraught - little boy is their second baby and she knew something was up from when he was about 16-18 months old. She wanted to take him to docs but his Dad 'wouldn't let her (southern European family - he is head of household and his word goes.)

He stopped speaking to DSIL when she tried to encourage him to see a specialist.

Their son is now receiving the support he needs (he is severely autistic and needs a lot of support), but his care/support workers have said he would be in a better place now if support had been provided earlier.

DSIL's brother is an arse anyway, and not a hands on dad, so he wasn't the one who was having to deal with the constant waking, difficulty feeding, screaming for hours on end.

It really was a case of 'No son of mine.....'

I'm only in my 30s and I can remember children at primary school who were known as naughty/difficult. I remember one child in particular whose mother was at her wits end with his behaviour, in particular his disturbed sleep and frequent "tantrums" for no discernible reason. The school nurse advised her to put a bolt on the outside of his bedroom door to prevent him leaving his room at night and was advised to place him in his room and ignore him to discourage the temper tantrums. I know this because our mums were friends. Looking back, knowing what I know now, I really do think that little boy was on the autistic spectrum. It does make me wonder how many parents even nowadays are struggling along wondering why their child is different and are not being signposted to the appropriate support.

Bang on, polter

The child is in KS1 and IMHO the parents apparent coping mechanisms are beginning to crumble.

Some characteristics observed:

Child wants own way and struggles to co-operate in play situations, is very literal in social interaction with others their age, difficulties in understanding others intentions/negative reaction to peers, inappropriate laughing, lacks awareness of personal space, very often does not respond to name, limited facial expressions, abnormal gait, very poor hand eye co-ordination, clumsy, spins in circles, can seem oblivious to task/situation at hand, poor gross motor skills, reduced awareness of socially acceptable behaviour, poor self-confidence, needs constant encouragement and reassurance to share interests/situations most peers enjoy - seems disinterested/absent enjoyment in what most children like, lethargic - could be mistaken for 'lazy', often seems aloof/in own world, frequently in scraps with other children, significant toileting issues, robot like voice, repeats back questions or phrases, has difficulty understanding concepts, following story lines, needs repetition to understand something fully/struggles to take in simple information, battles to grasp expected social niceties/behaviours, reduced spatial awareness.

The parent blames outside factors. That is the main reason I feel sad for the child. That and it seems parents want to 'fix' their child and have ignored an SN professional's advice/concerns.

Am I wrong to suspect ASD? Is it not in the child's best interests to be assessed and therefore fully supported?

Signs of possible ASD have been noticeable since child was a baby.

Speaking from my own experiences... yes, as a parent, you tend to get used to certain behaviour and coping with it. DD was always explosive but we just thought that was her thing. DH also said how she reminded him of SIL at the same age so we thought it was just SIL passing on her naughty genes (poor SIL!). She got put on the SEN register at school just when I started researching ASD. I thought I know about it but it turns out I had a very cliched view - robotic/obsessed/emotionless children etc. DD is very far from being emotionless! It all started fitting into place - not just DD but DH, SIL, and all their family really. Now I am v. eager to get her assessed - just so people realise she's not just a stroppy girl, she really has problems.

Interestingly now we are wondering if DS is the same, but I am feeling less certain about it. He is v. different from DD, although he does have some ASD aspects. So for him the shoe might be on the other foot - I might be the one reluctant to get him assessed, while pre-school etc are more focused on it.

In my experience it's quite common. I've had parents get very angry and threaten to make a complaint or "have me struck off" etc because I've broached the possibility of ASD. Very often, this is because their idea of ASD comes from unhelpful or inaccurate media representations or is based on the very severe end of the spectrum. I've found this kind of reaction is far more common in the parents of girls, as ASD tends to present very differently in girls and the signs can be much more subtle and harder to spot but the impact on the child is just as significant. I'm currently seeing a girl for severe Anxiety that I strongly believe (as do colleagues who are involved) is ASD related but the Parents are having none of it. They won't even discuss the possibility, allow me to explain why I feel their daughter is on the spectrum, or read any of the information I've provided let alone consent to a formal ASD assessment. I would not describe them as neglectful. They love their daughter, they are doing what they feel is right and it's not my place to judge them. I can empathise with their concerns about their daughter being "labeled" and "stigmatised" when they genuinely do not see how much she is struggling socially as, like a lot of kids with ASD, she presents very differently in different settings. I do think that their refusal to explore the possibility is to her detriment as she is being prevented from accessing extra support in school (which is the primary source of her anxiety) and other services that could help her. But I don't think that labeling them as neglectful and compelling them to have their DD assessed for ASD against their wishes would do anything to improve the situation. They are the ones at home with this child, managing the risks and caring for her so any interventions put in place would need their full support and engagement in order to be effective.

It's just as common for us to see parents on the opposite end of the scale, who are adamant that their child has ASD or ADHD and are very upset and angry to be told that this is not the case. I don't blame them to be honest, as they have often had to jump through numerous beurocratic hoops to get a referral, then waited a ridiculously long time for an appointment so feel that they're being "fobbed off" and that all their efforts have been futile when they don't get the response they were expecting. They have also frequently been told by friends, people on internet forums or other professionals (who don't have expert knowledge of ASD but speak with a lot of authority) that their child has ASD so feel frustrated that we are giving them conflicting information. To be honest, it doesn't help that some of my colleagues don't handle these situations sensitively and can be dismissive or give the impression that they think the parents are time wasters, overly anxious etc. which of course is unhelpful and completely inappropriate. Just because a child doesn't meet the criteria for ASD/ADHD diagnosis that doesn't mean that there aren't significant difficulties present or that they don't need support.

Sadly, we also see a lot of children who are referred to us with suspected ASD or ADHD but actually present with trauma and attachment based difficulties due to witnessing domestic violence, parental substance misuse or neglect in their early years etc. It's not unusual for parents in these circumstances to push for a diagnosis of ASD or ADHD, either because they are in denial about their situation or feeling guilty. They want an explanation for their child's behaviour and emotional distress that does not reflect on them, the home environment or any difficulties they may have had in parenting or bonding with their child.

These are all difficult and highly emotive situations that aren't going to be made easier by judgement and accusations of poor parenting.

I have a eight year old son with ASD (diagnosed last year) and a four year old daughter who is undergoing assessment for ASD (I also have a neurotypical child). I was also diagnosed with ASD last year.

I can honestly say that not knowing about my own ASD has been very difficult, I am unemployed, and have had difficulties with all kinds of relationships all my life. My self esteem is very low (though I'm working on this atm). Not knowing the reasons for my difficulties was terrible, I just thought I was useless.

Being unemployed and having difficulties in obtaining a career are not down to the 'label' but the issues I have because of having ASD, I believe this is the main reason for the high levels of unemployment amongst adults with ASD.

Knowing who you are, and what you need is paramount to a happy life, and not getting an ASD diagnosis means not knowing.

I'm glad I got my son diagnosed, his school life, confidence and attitude have all improved massively since because we know who he is, what his challenges are and how to help him.

I have a friend who has not obtained a label for her son, despite specialists recognising him as having ASD. Through her relationship with me she has recently made the decision to get the diagnosis. I'm glad I've been able to help.

Polter I don't want to give too much away. The parent has been approached by the school regarding of some of the child's difficulties, whether ASD has been/was actually suggested or picked up on, I don't know for sure. The person in authority who expressed concern has been dismissed by the parent as being presumptuous/patronising.

The parent are not neglectful of their child, they are however somewhat heedless.

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.

At last school my DC went to it wouldn't - in fact people who did get tested outside school found it was then used as a limit on the DC and what could be expect of them. I spoke to several parents who found this and it didn't bring any extra support.

It's rife in our family - so not unexpected so we're not looking for excuses and despite their issues they are doing well now.

We've moved and are waiting to see what their new school take is and then the secondary's while offering support at home for the two I think have problems. We have time before we get to the exams.

We've experienced teacher at the last school desperately wanting our DC to have extra support but the SENCO deciding that they weren't struggling enough at that point - then nearer sats it being a massive issue - or being told they grow out of it.

Also experience very poor interventions - one to help reading with DD1 was to get her to read a list of words faster and faster with TA so she was missing lessons but it had no impact on her normal reading speed and she would still read the same words wrong in another context.

Ironically that school was very good with ADHA and autism in children - not so hot on dyslexia and dispraxia.

I'm surprised a diagnosis is need to put some support in place - it was common in their last school for DC to have support for a bit then not need it any more.

I assume you've done a meeting with teacher and SENCO saying this is the list of concerns in our x number of years of experience this indicated these could be possible causes so would like to get diagnosis or them ruled out - this is support we can offer however we'd like to offer x but can only do this with diagnosis - or process started.

I do know some parents who were initially very hostile to idea there were underlying problems - they often have well meaning people round concurring with their denial. However the professionals round them - have been sympathetic and gentle and persistent and have got them though diagnosis at which point they'v access so much more help and support.

I think judging them while they get their heads around it would have been counter productive.

Bebobib it's possible they might need a few people to approach them with the possibly - couple of years teachers saying the same thing for it to sink in and be thought about.

Though it's not impossible that they will never accept there are underlying issues.

My own family were against me finding out if I was dyslexic - found out late in higher education though subsequent teacher still in contact with my family have said they suspected. Having said that though some of them turned out to be surprisingly supportive after diagnosis - though many of us in my generation have been - others refused to discuss on acknowledge.

I don't think you have to declare dyslexia or dyspraxia to employers unless specifically asked - at least that is the advice I've had over the years.

I have learnt to be wary about telling people about it generally - despite knowing I have multiple degrees people can suddenly decide I can't read or I must be stupid or they know all about me and they vaguely know someone with it or saw a program once.

I was diagnosed so late there wasn't much practicable support - extra time in exams was helpful- and I already had many coping strategies in place. It was nice to know there was a reason other than laziness or me being stupid.

Having said that private diagnosis cost a lot of money - so far we've decided given our circumstances supporting the DC was a better use of the money - nearer to exams that may well change.

We have found there are reasons to fear low expectations being place on diagnosed DC - but hopefully that isn't universal. I don't think it would be an issue at their current school for instance - but it is perhaps an area that the OP school could reassure the parents on as well as emphasise extra support their DC could have.