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.

Hmm, our DS was assessed for autism a while back. Some people were clearly 100% convinced that he was autistic. I felt more that the significant glue ear he had (entirely deaf) was more likely to be the cause but was very happy to engage in any way to get the best help for my DS. We went along with every assessment, including seeking out lots of assessments ourselves (I begged the GP for SALT involvement, contacted HV with concerns, fought for ENT treatment) and cooperated as much as we possibly could. Every professional who has assessed him has said that there are no signs of autism, and that he has shown every sign of suffering from the after effects of no hearing. We continue to push for DS to get the best help he can: ENT, Thrive, Ed Psych etc. We support everyone involved in his care, have always listened to all recommendations and have been congratulated on our parenting and support for DS (which is nice...).

However, someone who thought he was autistic (only ever a couple of people) is still convinced. There was lots of gossip at the school gates about what terrible, neglectful and blinkered parents we are. Meh. If we, and all the assessments so far turn out to be incorrect, then I'll be grateful for a diagnosis and will continue to support my boy as much as I can. In the meantime, we work with the diagnosis we have.

So, I'm sure that parents do sometimes fail to see the evidence. But I also think these things are complicated and it's never wise to jump to judgement, no matter how well you know the child. The professional who thought DS may have been autistic was fab and knowledgeable... But so was everyone else that saw him (including my family, full of experienced teachers). I always engage to my fullest with anyone who wants to help my son, but I don't have to agree with everything.

I think equal amounts of professional incompetance in particular with diagnosis if girls - parents who know somthing is wrong and cant be arsed - parents who think the system is shit and there is little point

My 9yo has asd and is very friendly, but he doesn't have the social know how to build healthy relationships... but he's perfectly capable of chatting away to people or wanting to play...etc.

There is a huge difference between unsocial, and not having the ability to maintain mutually acceptable social peer relationships.

I diagnosis doesn't limit people, the condition does. Even if someone is undiagnosed that doesn't make their struggles any less real or any less of a problem. In fact it could easily make it more of a problem as people may not understand and it May be harder to access reasonable adjustment.

Ds is awaiting an ADOS to confirm the asd which every professional knows he has, when we have that piece of paper though we will be able to access services we can't now locally so actually getting a diagnosis does matter in the sense of helping him access the support he needs.

We are about to start the ehcp process, without the reports we have gathered from various professionals that would be harder. He wouldn't get DLA without me having been able to provide the reports.

Even the process of getting to this point - and getting confirmation of spd and dyspraxia - has massively helped me understand Ds, accept his problems and learn how I can help him.

DS1 had a speech delay and as a result of this was quite behind socially when he first started talking aged 3, often becoming frustrated and reverting to making noises as he had not yet learned to express himself using words.

His first school spotted the above as markers and suggested he might have additional needs which we disagreed with and he started reception at another school when a place came up there. We explained what had happened previously, they agreed to keep an eye and he caught up with the others shortly. His reception teacher was very experienced with SEN and agreed that the above behaviours might be construed as traits but she didn't see that he was in need of any extra support and by the end of that year he had matured considerably and was almost a different child.

He is now 8 and thriving, very bright academically, sporty and social. Never been an issue and I'm actually very pleased we trusted our own instincts and chose not to proceed down the route the first school wanted us to.

i dont understand why people are delaying the investigation/diagnosis process. Its taken us nearly 3 years to get to where we are now, from his first referral to a specialist for possible dyspraxia, and then onto CAMHS for the ASD/ADHD, and now we're embroiled in the EHCP process.

A diagnosis can take SO long, and all it does is just open more and more doors to help an assistance.

Its not labelling unless you choose to suddenly see your child different because their issues have an official name. Its an answer, and one that if its is something that's going to affect them lifelong, protection under the Disability laws.

He was 3 years old and had already been already involved with SALT due to the language issue who saw no other problems and discharged him when his speech improved.

I suppose our view was that a speech delay would obviously have some impact on behaviour and socialisation for a short time while he caught up. He had only been speaking clearly for such a short time when he started nursery, he was just adjusting, he didn't require any kind of diagnosis or support and the opinion of the second school was the same.

Obviously if we had moved him and the new school had suggested an assessment we would have been forced to reevaluate but they were aware of the issue and didn't feel it was warranted.

Surely this whole thread proves that support is not needs led as we keep being told.
If it was, surely all these children whose parents are in denial would be getting the support they needed in school anyway?

Polter, in an ideal world that's how it should be. Where I live the child is assessed for ASD, they dismiss other co morbid conditions (ds has adhd traits and SPD), will offer support if (and only if) the child gets a diagnosis, if they don't they are very clear that it is a parenting issue - unfortunately I've seen this happen to too many families in my area, it's shocking.

The issue is if parents are in denial then schools are limited in how much support they can put in place. Parents have to be willing to accept the needs of the child for a needs led approach to work.

I was on the thread earlier, saying that I didn't want a label child. I want to make it clear that I don't see a label as a pejorative thing.

My ds1 presents as nt unless you know him well. I would have to fight tooth and nail for a diagnosis, and I can't see the point. It wouldn't help him to access any support that I can't give him myself, with the help of the friends and professionals I am already in touch with. I'm not neglectful, honestly!

DS is 6 and may be on the spectrum, he certainly is quirky but he is also very academically able. We have considered assessment but have decided against it for now simply because we cannot see any advantages at this stage to having a diagnosis. Socially he is awkward but a diagnosis of ASD is not going to make social interactions with children any easier for him, all it means is that we can explain his more unusual behaviour to other adults. I don't feel the need to explain him, he is only six and he really doesn't care what other adults think of him. DS is generally easy enough to manage as long as we remember to anticipate where problems might arise - sure there are days when this can be wearing but I don't see how a diagnosis would help with this. Because he is very academically able he does not need any special schooling, he started school as a free reader and has embraced every aspect of his schooling with enthusiasm. School suits him because of the order and routine.

So I am not in denial, I simply do not see the point of putting the family through the stress of seeking an ASD diagnosis. There have been a lot of suggestions from nursery, health visitors and even the SALT that DS is on the spectrum, these actually irritate me as I feel that they are simply making pop diagnoses with no actual understanding. I realise that we are lucky, we have very good coping strategies in place and day to day we do not struggle but I am also at the suggestion that our decision would be considered neglectful.

I don't know but I appreciate the difficult journey from birth to seeking a diagnosis for any pervasive developmental disorder. I'm interested in how society makes parents feel uncomfortable about having 'different' children. I hope that the model of inclusion, for all it's ills, will foster a environment where those, and the families of those with SN can thrive and feel within society. I'm a bit passionate about it!

Tirfar being academically very able does not preclude the need for a special school. There are many children with ASD (and other diagnoses) who are academically high flyers but still need specialist schooling due their condition. Unfortunately there are not enough special schools that deal with the mix of academic ability and other difficulties.

But a diagnosis, or more so the process, can help to identify the areas they struggle with so social skills, sensory overload whatever and help the child, parents, school and others learn tequniques which will help the child.

The fact that a number of professionals have suggested it to me would say it is something worth looking into further. Just because he is coping now doesn't mean he always will. Here it takes around 2 years from first referal to final assessment so surely it's better to get the process started younger than waiting until someone is really struggling and then starting it.

As far as I can see from doing some research the only way we would get his needs fully met around here would be to go down the private route. This may yet happen but at the age of six we are happy if he is happy in school.

He was assessed for an ILP within 3 months of starting reception - they did have some concerns re communication and engagement but we moved areas very soon after that (unrelated reasons, we weren't running away ) and his new school read the report but said that they didn't share the concerns. He still has the ILP but this basically involves stretching within subject areas.

I do see the point about him maybe not coping so well in the future but I think we will just have to cross that hurdle if we come to it. I am not burying my head in the sand but I am very put off starting a process that by all accounts is very stressful for all involved.

DS was coping fine until yr3 and then it went spectacularly wrong in the June of that school year. 6 months later we are talking about full time 1:1 support, an ehcp and taking him out of mainstream.

Coping in yr r,1 and 2 does not mean that they are fine or don't need the help a diagnosis will bring when it suddenly explodes in your face like it did for us.

For, its stressful for the parent, not the child. DS has only been seen by the cahms Dr once, the rest have been just me or the school senco and based on classroom observations and my input.

OP:

1. In other European countries autism and similar are not seen as neurological conditions but rather as psychological conditions. This means that (as I understand it) children presenting with similar behaviours as you have described would have their needs assessed and treated in a different way by the school.

1. Early years trauma which can include serious illnesses and accidents can cause behaviours to those which you describe, I believe. Again, the treatment for trauma related behaviour is completely different to that of ASD/ADHD - therapy can completely "normalise" a child.

OP, I think what I am saying is that the whole area is incredibly complex and it is going to be difficult for you to have a handle on what is going on as an outsider. Can you leave it to the school to deal? I am not sure talking about neglect is going to help anyone?

Polter yes yes yes to your last comment.

My ds is very much on the "disabling" end of autism. He's not some quirky genius, he is very disabled by his autism. That's not me being harsh, I love my little boy to the moon and back but he will require substantial care for the rest of his life. I think everyone needs to be aware that the common perception of autism as generally being some higher functioning quirky individual is just part of what autism can mean.

I have a DD who I am convinced has HFA. I tried to get her assessed when she was 5 but, IMO, her being a girl made it too subtle to tick their boxes. An example was the Sally Anne test. She was told that Sally had taken her watch off so she could swim in the sea, then put it in her bag. But a naughty bird took the watch up in to a tree. Where would Sally look for the watch? If she said 'the tree' it shows a problem with 'theory of mind'. If she said 'her bag' it shows that she can place herself in the shoes of Sally. She passed the test- she said 'in her bag'. But after, when I asked why Sally looked in her bag, DD2 said "because it's her bag." Dd2 hadn't engaged with the test...she wasn't thinking of Sally, she was thinking of her own logic. It's Sally's bag so that's where she'll look.

This week, DD2 (now 8) forgot her homework. Her teacher said "it will be treated as if you haven't done it". When DD2 told me, I said "Did that upset you DD2?" She said "well it did a bit, but mostly it didn't make any sense because I did do it!" No amount of explaining that the teacher would only use the fact that it hadn't been brought in to school to judge it could make her understand. She just kept saying "it just doesn't make sense, because I have done it, I just don't have it at school!"

We had terrible tantrums over 'estimating' homework this week, because the answers weren't 'right'.

But, mostly her school (this the third school, because she fell apart at the previous two) 'get' her. She doesn't need an ASD dx because they are happy to use phrases to describe her needs without a name. E.g. 'DD2 likes clear instructions' 'DD2 can't cope with teachers using metaphors' 'DD2 likes the routine to stay the same' 'DD2 likes rules to follow' 'DD2 needs to sit near an adult during maths activities, to access support' 'DD2 likes tasks to be split into parts', etc.

Also, when she's been bullied, the HT had approached it with 'OK, I'll deal with the girls responsible, but let's give DD2 some phrases she can say, such as "come here DD2..." 'no thanks, I've got my friends over here', "you're a silly year 3!" 'Don't be ridiculous, I'm in the same year as you'., etc., to make her a less easy target.