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

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Bebobib Thu 21-Jan-16 22:44:55

...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.

SisterMoonshine Thu 21-Jan-16 22:54:10

Good question.
My niece may have a condition and her parents are in the middle of discussing the pros and cons of a diagnosis (or "labelling her" as they call it). It often comes up how several members of the family have maybe gone through life with an undiagnosed condition.
I think perhaps now that diagnosis and support is supposedly better these days, we need time to pass to see how this generation fair, before all parents will be convinced that going through the process is always the best thing for individual children.

tiggytape Thu 21-Jan-16 22:56:27

I suspect it is much more common for the situation to be the reverse: either parents know something is going on but cannot get a diagnosis or some parents worrying unduly about potential conditions or additional needs not realising that the spectrum of what's typical for a young child is very broad.

Then there are probably people who find it hard to accept initial concerns from outside sources but eventually do - perhaps because they know their child so well they don't always see a problem (eg parents can understand a child's speech perfectly even when nobody else can) or even because they have undiagnosed traits themselves and don't see those traits as a sign of any potential issue (eg ASD where rigid thinking or certain behaviours are traits that the parent shares and won't necessarily see as a indicator of anything out of the ordinary).

I suppose if parents willfully denied a child access to assessment and support where it was strongly suspected a child needed intervention then it could be on a par with denying other interventions in a child's best interests and therefore, at the extreme end of the scale, neglect. But most parents in that situation are probably doing what they think best (eg fear of "labelling") so need support to accept help rather than being pushed.

SisterMoonshine Thu 21-Jan-16 23:00:10

So true about not seeing so much of a problem. A whole family can adapt around a child to avoid issues arising that theybdon't even know they are doing it.

SaucyJack Thu 21-Jan-16 23:02:32

I wouldn't imagine it would be a form of neglect deprnding on whether the parents had developed adequate coping strategies for their child's behaviour- regardless of whether they objected to having a label applied to their child. Neglect is about whether the child's needs are being met.

Obviously if the child had a medical condition (diabetes for ex.) and the parents were refusing treatment (insulin in above example) then that would be a different matter.

BlackeyedShepherdsbringsheep Thu 21-Jan-16 23:07:08

well ex thought there was nothing wrong with ds. but then they are really similar.

Msqueen33 Thu 21-Jan-16 23:07:35

As a parent of a child with autism it's very hard to hear that their are issues with your child. That said I fought for a diagnosis. Also, depending on where you see the child the child might be completely different at home so the parents put it down to having a slightly quirky child.

BelindaBagwash Thu 21-Jan-16 23:10:27

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

donajimena Thu 21-Jan-16 23:10:28

I didn't know anything was 'up' with my son until the school pulled me up. Looking back it was all there under my nose. I just didn't see it.
I see it with my second child. But I can't get help. The waiting list is too long.

NeedsAsockamnesty Thu 21-Jan-16 23:13:07

I would say it was rather less common than services denial.

For many children a DX will make no difference to the parents ability to meet the childs needs, for many children a dx will make it harder to meet the childs needs due to lack of cooperation from services the child uses for others it will make a small difference for some it will make a huge difference.

It would be unusual for neglect to be a concern if that was the only concern about the parents

VertigoNun Thu 21-Jan-16 23:13:43

I know someone who wouldn't accept he produced in his eyes narcissistic dick "an imperfect child" so blamed his ex and her parenting instead.

dilbert19912 Thu 21-Jan-16 23:14:11

I wouldnt call it neglect. There are plenty of families who mill along for a few years thinking not everything is completely normal but thing their Dc will grow out of it etc until it comes to a time where they realise the world isnt going to adapt to suit your childs specific needs - especially if they dont know what to say or who to go to.
Dd1 has ASD and was diagnosed at 4 and statemented so now she gets all the help she requires. We suspect DD2 is also presenting as autistic and i am taking her to toddler groups for children with speech delay and other non dignosed things but were not ready to have her diagnosed just yet - there is no need to for now and our time isnt right.
Denying extra support and refusal could be for a number of reasons. Fear of the unknown is one thing. What next, who do we go to etc.

On the flip side, my youngest sibling definitely has traits of asd and my mother left him to go through his whole school life realisng he was struggling and couldnt really be arsed to meet with the schools etc or accept outside help. I would class that as neglect as it was just blatant disregard for the wellbeing of her child.

Lauren15 Thu 21-Jan-16 23:14:17

As someone who has worked with SN pupils for several years, I can tell you it's quite common. There's one child in our school right now who desperately needs assessment and intervention but the parents absolutely refuse to give permission. It depresses me especially because early intervention can make such a difference. On the other hand, I know lots of people who want their dc diagnosed as dyslexic just because they're not racing ahead at school and they get cross when the school says they are perfectly fine.

Titsywoo Thu 21-Jan-16 23:14:47

My child has been diagnosed with autism. Thus far his diagnosis had made not one jot of difference to his life. I'm not sure it was worth it at all to be honest. He is who he is and that is that. Maybe people are just worried about their kids being labelled for life. I worry about telling him (I haven't done yet as I think he would react with anger and upset).

NewYearNewToads Thu 21-Jan-16 23:15:51

IME pretty common. My own father refused to accept there was anything "wrong" with me for years and would trot out every and any excuse he could think of to explain the way I was.

Then again perhaps some parents just don't notice because it's just how their child is, it's "normal" for them iyswim.

IWannaBeAPopstar Thu 21-Jan-16 23:16:15

I suspect dd1 (12) of having issues, possibly on the spectrum, but I haven't been able to get a referral, let alone a diagnosis. Our family adapted to her behaviour over the years, and it wasn't until a close friend suggested she may not be nt that I was pulled up short and considered the possibility.

As this time, we are not pursuing a diagnosis. She is coping okay, could be better, but we are managing. I think we will look into it again in the summer, for various reasons.

My dh isn't really interested in discussing the possibility. I think it's because he sees her coping and doesn't really worry it will get harder/worse (he was never a teenaged girl...). Also, our ds is ASD, and the thought of two children on the spectrum is hard. But we'll get there I'm sure.

NeedsAsockamnesty Thu 21-Jan-16 23:17:02

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

Grossly unfair thing to say.

There are many and varied reasons for not wanting to use a SEN unit or none mainstream group/club/class for heavens sake it was not that long ago if it has even stopped now that the people coming out with the excuses NOT to were the people reasonsible for funding these units

dilbert19912 Thu 21-Jan-16 23:17:35

Sorry, that sounded a bit rambling crazy.

Darvany Thu 21-Jan-16 23:17:49

Very common. A child who was the absolute mirror of my DS at nursery (even down to similar art-work) had a parent who was an addict. She refused to engage and he was sent to residential school aged five sad

Lauren15 Thu 21-Jan-16 23:24:19

I have to say Belinda's comment sounded like a few parents I've known over the years.

Scarletforya Thu 21-Jan-16 23:27:53

I think it's occasional from what I can see anecdotally. I work with preschoolers.

With asd and aspergers I sometimes feel the parent can be on the spectrum as well and so not notice anything is different.

SisterMoonshine Thu 21-Jan-16 23:30:44

Well thinking about the responses here, it doesn't seem neglectful to avoid assessments etc, in fact these parents are probably working very hard and making sacrifices for their children's welbeing.
It is interesting the differing attitudes of parents compared to adults who are in the children's life because they are paid to be.

SaucyJack Thu 21-Jan-16 23:32:29

I wonder how much of it has to do with the lack of awareness about the autistic spectrum/HFA?

I'm not that old, but I remember when autistic was used to mean classical autism/Kanner syndrome and implied a life-altering disability.

I can imagine it might be hard for some parents with an averagely-intelligent child in mainstream ed. to reconcile a diagnosis of ASD with their own understanding of autism, and the (lack of) necessity of a label of autism.

Butteredparsnips Thu 21-Jan-16 23:32:41

Really interesting question, in a couple of examples in my own limited experience, I would say the parents are blind to it rather than neglectful.

I wonder if it is relevant that spectrum disorders often run in families, I know of 2 families where their adult DC have been diagnosed with autism in their 20's. In both these families it has come as a huge shock, as there was no previous inkling that there might be an underlying condition, and yet I strongly suspect that each of these adults has a parent with an undiagnosed disorder. Could it be that parents on the spectrum are less likely to identify symptoms in their own DC?

Bebobib Thu 21-Jan-16 23:33:27

After concerns being flagged up by a preschool keyworker, the child in question underwent brief assessment and underwent SALT. The SALT expressed concerns regarding possible difficulties with receptive language which the parent did not agree with.

I do not specialise in SEN/SN, however having worked with the EYFS, the child has quite noticeable delays or difficulties with communication, social, emotional and physical development and is in need of further assessment and support.

I am concerned the parents are refusing to recognize/accept that certain characteristic behaviour is abnormal and are avoiding ASD as a very real possibility, rather blaming other factors for their child's symptoms. The denial of the need for treatment, to me, raises considerable for the child's care and future prospects.

Understandably all parents just want a 'normal' child, we all do when we first cradle our newborn babies, we have hopes and aspirations for our children. I get the impression they have implemented coping mechanisms in hope there is improvement through use of their own measures, rather than their child being labelled? ie. they're trying to 'fix' their child.

I suppose there is not much that can be done to help? I feel desperately sad for the child. sad

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