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.

Very common. I have known parents take a different sibling to assessments.

It's very common in Early Years, as many parents need time to come to terms with the idea. As the child gets older, and the family meet more and more people, they may only then begin to be ready to see what Nursery staff saw some time before.

Karen

I sobbed my heart out when ds was diagnosed. It isn't an easy thing to face, but six years later, he has a good understanding of himself and is able to stand up for himself in difficult situations by saying "I'm autistic" and people tend to back off/approach him differently. Diagnosis has been very empowering for him.

raises considerable concerns for

JessicaRuby that is my angle on it. The parents are doing their child no favours, especially when the child is glaringly lagging behind (its) peers.

Also ds was diagnosed at 8. I never thought he was autistic and I am a fairly intelligent person. Noone we knew thought he was including teachers. In the last year or two behaviours became slightly more obvious but even now most people wouldn't realise. We are all used to his ways and he has adapted. Part of me still thinks it is all bullocks and he's just a bit different (as are lots of people). Do you have an autistic child op? Don't make assumptions and accusations when you have no idea how hard it is to understand something as complex as autism in relation to your child. Neglect? Maybe in a few cases but most people are just trying to do the right thing by their child.

Bollocks not bullocks

I can see why parents will withdraw from the process of assessment. It can be incredibly patronising and I think when the focus is quite negative focusing on what your child has failed on the barriers can go up - and not all professionals give their feedback well.

I personally had the reverse - the first community paediatrician I saw told me DS1 wasn't autistic as he waved to her. She hadn't tried to engage him at all and actually wanted me to leave him alone in a waiting room that he could have potentially left and got outside on to the street. He was just turned 2! I felt humiliated, patronised and not listened to so I declined a follow up. The SALT eventually convinced me to go back into the system and assured me they had a new paediatrician in post. He was dx with ASD.

In my experience it's usually one of the parents who are in denial leading to huge conflict within the family at a time when everyone desperately needs to be pulling together.

When parent/parents are resistant The usual thing is "well I don't want label him/her" a statement that makes me want to tear my hair out. So you just want them to struggle along often sensing everyone's disapproval but incapable of changing their behaviour instead then? It's not a label it's understanding.

My nephew is two and hasn't spoken one word yet. My SIL won't consider seeking help and is supported in this by my DH and her parents.

It's upsetting really because she and the family understand him by looking for signs/signals that he for eg. wants a drink or is tired...but he will be attending nursery soon and his peers can all speak...and communicate.

He's getting more and more frustrated not being able to talk...he understands everything...if I ask him to "bring the blue ball" for eg he will....his humour is fine and he's lovely....but all he can say is "Uh."

I suspect something is physically wrong...not with his understanding but with actually forming words. He needs to see someone but SIL just ignores it and MIL says "he will get there when he wants to talk...he just doesn't want to yet"

Titsywoo I did ask if anyone thought denial/refusal could be classed as neglect. I do think the child does have (its) basic needs met. I just wonder if the parents refusal/denial of SN is ultimately fair on the child, with there being potentially life long implications for the child.

The parent surely has an inkling? The areas of concern, which I have pointed out in a pp are very obvious, I have over the years witnessed many different 'excuses' for a variety of different quirks and difficulties from the parents. Admittedly, I find it strange the parent has not already picked up their child could very likely be on the spectrum. For all I know the school may have already picked up on SN.

The contast here between the people who work with children with extra needs ans the people who have children with extra needs is immense.

Feels a little patronising this thread.

thehouse has your nephew been seen by their hv? Not talking at two isn't highly unusual and as you say he understands what you are saying. My cousin didn't speak until she was four but met every other milestone. Doctors and her parents were at their wits ends. She had no issues though and she now works with children who have additional needs

Interesting. Our local Family Court clearly don't regard denial or refusal to obtain help as neglect. In fact they seem to take the opposite view that to try to seek help for a child who is struggling is an issue and that the parent who refuses to assess should be supported in that decision. Perverse.

Needs I'm just stating the facts about tjis particular child. His parents seem to think that 7 years in mainstream will make him like the rest of his peers.

It won't.

Parents might not believe it because their child might behave pretty normal with them.

DS is our eldest and has
Mild ASD. When he was 3 and 4 I assumed his behaviour was relatively normal as he was my first child and his symptoms were subtle. I did think he was a bit more grumpy than other children.

I only realise now that his behaviour while in nursery was not normal. He did not interact well with the other children - but the nursery always told me he 'had a great day' so I was reassured. When I started noticing his lack of friends and specifically asked the nursery if they thought it might be autism they told me they didn't think so.

I am not sure "neglect" is the right word but can offer a perspective. Both I and my now ex-h knew something was "off" with our DS pretty much from birth. A very on the ball HV referred him for assessment when he was 2 1/2, I hadn't suspected autism. Unfortunately, this coincided with my then husband's affair and he decided that there was nothing wrong with DS and that the HV appointment had never happened. This was compounded by OW diagnosing my DS as "not autistic", that I was "attention seeking and only doing it to claim DLA" . Husband checked out of the process immediately and has remained thus except for his attendance at the diagnostic appointment to "prove me wrong". DS was diagnosed with Aspergers. His father's lack of input with this and lack of ongoing support has been shocking. I later found out that OW's DS has "issues" that she has refused to address. Quite awful really and his/their attitude has been very negative for my DS.

For me, it has been empowering. It opened a huge support network, access to courses, sensory clinics etc. The result of my "education" is a little boy who is high functioning and no longer the utter nightmare he was. Without all of the help and support I have received, we wouldn't be where we are now. I think it's an awful shame that some parents (particularly fathers in my experience) refuse to acknowledge the situation when in actual fact they are failing their children and not affording them the support they deserve. I know one woman with an obviously autistic child who just dismisses him as "quirky"...he's not quirky, he needs help. It's very sad.

I imagine it's hugely frustrating for you OP, particularly as in my (very fortunate) experience, my DS's school have been utterly wonderful. What a shame for that child.

I know of a couple.

One who started school not talking and in nappies. The school tried from the start to get his parents to agree to assessment and statementing. Time and again they refused. The child had obvious learning difficulties, but still nothing was done. The school tried their best but with no statement obviously the child couldn't get the 1:1 support he needed.

Finally in year 6 they agreed and he got his statement and went to a SEN secondary school.

other person is a relative. We knew from a young age that their child had ASD, but nothing was ever done despite bullying and social skills problems. But he's so clever! He was seen as a teenager and probable Aspergers was mentioned but I don't think they ever followed up the appointment for a proper diagnosis. Now they are adult and it's so obvious and they are having real trouble coping in the big wide world.

It seems strange to me - as soon as I recognised there was something different with my child I was straight on getting a diagnosis, a statement and finding the right school for him, where he has thrived.

1 of my DSs has ASD, we were told by the 1st paediatrician that we saw that he didn't . We could have accepted that and just that that it was all dyspraxia . We didn't, it took a referral after we had moved to a different health area to get a diagnosis. The older he gets the more non neurotypical he seems.( he is amazing, he is just not like most people). But without our persistence we could have had people saying that we were not trying.
Parents of a child that we know have gone to their doctors on more than 1occasion concerned about ASD. The flow charts to help referral have now changed, there doesn't seem any way for GPs in this area to refer for ASD assessment unless they deliberately decide to ignore the flowcharts. They keep getting referred for counselling. But those who didn't know this could just say that the parents weren't trying and were in denial.
How do you tell the difference between those who are actually in denial and those who have been given the wrong advice by people they thought they could trust?

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.

It's not a different matter. If the child has ASD they need a diagnosis to make sure their needs are met, in exactly the same way.

And parents who don't want a "label" of ASD put on their child will find their child will get other "labels" such as "naughty" or "weird" down the line and will always wonder why they don't fit in.

It shouldn't be a case of "accepting a diagnosis" or not. It isn't with other conditions.

It reflects a negative view of autism in society that is pervasive and has quite a long way to go before it is wiped out IMO.

I'm not talking about people who are unsure whether their child actually HAS ASD, but those who go on about "not wanting labels on their child".

I tend to notice quite the opposite. People want to find any sort of SN so they can get away with simply bad parenting and child's horrid behaviour. And it is certainly not about getting the right help.