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.

Ive just listened to a shocking conversation between a mum and a head teacher (I am transcribing it and sending it to children's services)

The mum is a mum of a child who is in school only 2 hours per week and the school cannot even cope with that yet refuse to admit they cannot meet his needs (child has ECHP and dx) a dx really really helped that kid. This head does not even believe ASD exists and has never heard of a melt down!

It's not immaterial if a head teacher doesn't believe in autism, is it?

Plenty of people believe all sorts of mad stuff - plenty of people are in denial - but a head teacher is responsible for children and their care.

"These things,what do you call them? Oh yes meltdowns " said in a tone dripping with disdain.

Not believing not understanding when you are a professional in a school who is clearly failing to even attempt to meet a childs needs is not immaterial.

And Yep I do have mums consent to refer to this.

"I am considering not believing in obesity.....so much easier than dieting or exercising.grin"

That sounds like a good plan! :o

I believe there is a bigger problem of schools not believing parents and diagnoses than parents ignoring their child's SN, but it's easier to continue blaming parents.

There is quite a bit of contempt from neurotypical people towards those with asd. They simply haven't got a bloody clue.

Wow I'm so sorry you feel that way hiddenhome. This thread has been fascinating, emotional, illuminating and valuable for me as I have a niece who has finally been diagnosed with ASD and other conditions at aged 15. There are many of us without ASD and without children with ASD who most certainly do not feel contempt and do NOT think it is an excuse for bad parenting (WTF?!). I'm sorry for anyone on this thread who has encountered that sort of shitty attitude .

I think it's astonishingly common, and that it does result in neglect. Usually, as so many pps have said, it's denied because one or both parents are themselves on the spectrum, and will not accept a diagnosis for their dc because the dc's behaviour and traits are seen as completely "typical".

Twgtwf, I am going to hazard a guess that you are not in fact a professional who would be competent to diagnose spectrum on either the parents or their dc? If so, why on earth are you trying to do it?

I know traduction, armchair diagnosis at its very best, laughable really. So because we are adopting a wait and see aspprtoach witty regards to ASD, we are on the spectrum as well .

We have a follow up paed appointment so will see what he says, as opposed to somebody who does not know me or my child!

*yankee my dc2 is home educated, and I will soon be home educating dc1. Both have autism. What makes you think they won't be "flagged by any external services"? Mine see medical professionals, local counsellor, and we are in touch with the LA home education person. They're not invisible. But they have been failed by the LA schools and home education was the right choice for them because they struggled in school.

As long as they are educating their child, teaching him/her coping skills and life skills, helping them to progress to their potential, how is home educating them doing them a disservice? confused

A child with SNs doesn't have to be in school nor do they have to have a diagnosis to get support. There's a difference between "not wanting a label" and "not supporting their child."

Mine each have a diagnosis but I would make the same choice even if they did not at this point.*

I am also home educating a child with autism. The fundamental difference is that this family refuse to get him assessed because they know the outcome will be a diagnosis, and they can't handle that.

I personally feel this is a disservice because later on down the line he will most likely benefit from services that are available for those with a dx. I am making the assumption that they will want him to lead a life that maximizes his potential though.

From reading various threads on here a dx (where autism is concerned) is essential in order to access support in further/higher education. My dc would not be able to cope in a classroom with 20+ children in school, and we have very few ASD units attached to mainstream so home education is the best thing for her. I am aware however that if I want her to be able to do things beyond the home in later life (such as further/higher education, work, training etc) then the support she will need in place must come from a dx.

^highlight fail.

When parents fear "labelling", it is because they share society's massive ignorance, fear and disgust of "disability". Whether they consciously recognise this or not, that is the underlying issue. IMO.

Good point, Polter.

My dcs have a diagnosis (several of them, maybe we're collecting? ), but I don't feel that our choice and our experiences of SNs give me the right to judge others that choose not to pursue that route.

If they can meet his needs, prepare him for an independent adult life as much as possible, and he is happy, I would find it hard to criticise. We've spent years fighting for a diagnosis, statement, support, and years later, we're still fighting. I wonder how much more energy I could have focused on the dcs themselves if I hadn't had to put so much energy into the fight.

I am glad we got the diagnosis, if nothing else so that the dcs will have that info as they get older, in case it is needed. I cannot, however, honestly say that having the diagnosis changed anything - not the level of support they receive, not the reactions of people we meet, not how we deal with things at home. Nothing. The people that questioned whether or not they had SNs (you know - "SNs is really just naughty kids" people that we know), still don't believe it. Their mantra is just slowly changing to "oh they hand out the diagnosis and meds like sweets to any child that misbehaves." (ignoring the fact that neither of my dcs are on meds for their SNs)

I also think that people are talking about different things here. A child having autistic traits, and their parents possibly having autistic traits, isn't the same as being autistic. Adults who could be said to have autistic traits are often high achievers, apparently, if their particular trait is to be able to focus and shut out external stimuli for hours! Such as surgeons, pilots, lawyers, IT people etc. Sometimes children who are wilful, bright, quirky are labelled by others as on the spectrum where that simply does not apply. It is not remotely helpful to people who have autism or whose children have autism and who want and need support.

In relation to the language issue raised by the OP, I had a 3 year old who simply refused to even acknowledge instructions when they first went to nursery. There were all sorts of rumblings about autism. I felt reasonably confident that the problem was not autism and indeed my rebellious 3 year old settled down within a couple of months and is now just seen as bright and sometimes a bit mischievous (and we are working on the latter). The rumblings caused us stress though.

The thing about diagnosis and labels is that we aren't sure what the consequences will be in years to come and how it might affect the child - in terms of how they are treated by the medical profession, if they have children, work prospects, etc. That might be a very ignorant concern on my part but it was something which went through my head when there were rumblings. If a child is happy and doing fine academically then I would not blame the parents hanging back.

The other thing which went through my head was that I did not want my child to have to go through analysis and assessments because they would be stressful and eat into their playing and having fun time! I spoke to a salt who agreed - they said wait. And in the end it wasn't necessary.

I do also think that there is a lack of awareness of other causes of symptoms which are similar to autism/adhd in children under 6, and also the fact that a child's brain is not fully developed until around 6 (I think) and nor is their self control.

support absolutely is NOT dependent on dx and assessment will not lead to dx necessarily HOWEVER severe the presentation is.
Independent living and university are not really an option for a large number of people with autism. I personally think a happy childhood is a VERY worthy and respectable aim for parents and won't be sacrificing that for any academic outcome for any of my children

Really zzzz? So without a dx you could go into a FE college/university/workplace and insist that your child/young adult needs additional support, regular breaks, time out of the group environment, reduced noise etc (to name a few out of a very long list of requirements that my dc requires) just because?

I am only using these places as an example. Academic success for me is not a measurement of happiness or success, however, I do want all the support systems in place to enable my child to be access these facilities should she want to.

A happy childhood is a very worthy cause indeed, and i believe that all good parents strive for that, whether their dc have SEN or not. I do not however believe that receiving a dx is counteractive to that.

My ds has been assessed and I can honestly say it was rarely stressful for him. As far as he was concerned it was mostly playing games. If he did get slightly stressed or bored then he simply wouldn't 'play the game' and started being silly so they had to stop the assessment. I imagine this would be the case with most young children.

I've been finding the assessment process far more stressful for me than for DS. It gives me all sort of worries. DS thinks it's a jolly outing because he gets time off school, a nice cafe lunch on the way home, and he gets to talk the ears off his case worker about tornadoes and ring-tailed lemurs.