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.

Completely understand what you mean Polter. I'm not sure if it's the same everywhere but in Norfolk they no longer diagnose high or low functioning asd - it's just "asd" and I actually think that's better. As you say being so called higher functioning doesn't necessarily mean you can cope any better than someone with lower functioning autism in certain situations. It's very complex.

I don't like the prefix 'mild' autism either. Just because someone can pass as 'normal' doesn't mean that the effects of their autism doesn't make life a struggle for them. Some people with asd are more able to cope with day to day self care demands and hold down a job etc., but that doesn't mean that they're okay.

Zzzzz. That in a nutshell.

It certainly happens. I don't know how commonly and suspect I may know an unrepresentative number of cases due to my work but I definitely know a number of examples.

More extreme cases include:
a child who had been to many different schools by the time they were in their early teens - every time the school raised concerns the parents moved them elsewhere. The child was very clearly significantly autistic.

a child who, at many years older, presented as an NT 4-5 year old socially, academically, emotionally and in some physical aspects. Parent in such strong denial that, when it was suggested that a specialist school would be appropriate, they said 'but if they go to a special school it's going to look terrible on their university application.'

a child who presents with completely stereotypical, classic aspergers - every single pointer that so many people assume are always present in ASD but actually don't have to be at all is there. Although very academic, child struggles massively socially and is bright enough to know and feel that nobody accepts or likes them. I'm sure the support that might come with diagnosis would help. But it is impossible to even hint at a problem with either parent. Their child is their child and is their perfectly individual NT child. A suggestion of anything else equals brick wall.

Obviously, in cases like that, the parents, though I understand their anguish, are almost certainly harming their child by not acting.

But, in more blurred/minor cases, I don't think it's always so. Eg:

A family of a fair number of children. All have things about them that scream aspergers. But all seem to improve (or learn to deal with it, who knows) as they get older and one parent says they are exactly like them and therefore they will be fine. All the children are coping well academically and socially so, really, who's to say those parents are wrong?

A SENCO has recently suggested that my 13 year old DD has ASD. Personally, I think she's wrong Certainly, my DD has an eating disorder and is a very anxious child but, although I cannot and would never try to deny that she has mental health problems, to my, not inexperienced, eye, she is totally NT. I don't see the signs for ASD at all. Does not agreeing make me irresponsible? I don't know.

This recent experience has led me to wonder if the diagnosis of ASD can actually be objective? I suspect it's so difficult to get diagnosed at times purely because it is subjective and some people see what others don't, see things differently etc.

I've also come across children with a diagnosis that has left everybody around them scratching their heads because we just can't see any evidence of it. Whether or not they're misdiagnosed or we just can't see the problem that is there I don't know.

zzzzz I totally agree, the language thing especially (because that is within my experience). My bright above average intelligence ds with speech delay and disorder came out as having the abilities of an 18 month old when nursery tested him at 4 using a very language heavy test. Actually I think they did realise this wasn't correct but still decided he must have general learning disabilities. Fortunately, they have since realised he is above average (using a different language heavy test so also not accurate).

It an Interesting question OP.

I had the reverse situation where two of my four were exceptionally quiet for the first year or so at school. One barely spoke and both were very reserved and didn't interact with the other kids that much unless it was 1 on 1. Teachers commented on it and I'm sure other parents thought there was something up with them but thankfully, I knew they were NT. They were completely normally behaved at home and were chatty, funny, happy and playful. They also interacted with their non school friends just fine.

They are now at Uni and doing well in all aspects of their lives. Sometimes I wonder if another set of parents they might have tried to get them diagnosed with something.

It's not easy diagnose DC unless they have very obvious traits especially if you have not had proper training. such as a medical degree I don't think it's always appropriate to Diagnose other peoples DC.

Reading this thread, I'm wondering whether DS is one of the undiagnosed children with an undiagnosed parent. He was under SENCO for a while in primary school, but I could never really work out what the problem was. She certainly mentioned traits which I have, but she was very vague (or at least I felt she was) and after a while the meetings stopped. Do you think she thought I was neglectful or in denial?

kirkenes I feel the same about ds almost 4, he is chatty at home, he does not have behavioural or sensory issues and is on a totally NT wavelength compared to my dd who has ASD. Yes I know it is on a spectrum, but as a parent you get that feeling. I am not denying he has SN, because he does have speech difficulties which impact on his ability to communicate and interact, I have noticed as his speech is coming on, he is much more confident in interacting with others. At nursery he is a funny and happy little boy making progress. I am not comfortable, with this notion of an automatic assumption of ASD, if the child has speech and language and communication difficulties, they do not always go hand in hand. As ds specialist teaching team specialist and SALT have said, that his speech delay does not mean he has ASD, for that reason we are holding back.

At the same time we are not denying him the support he needs, as he does have a speech and language delay and a dev delay, but he does not need a dx to get support and an EHCP! When I asked him why he does not talk much at nursery, he told me that he does not want to. I saw as he went in, he tried to tell the teacher something, but but the more confident speakers got in there first.

As ds is so young, unless he was displaying obvious signs of ASD, which were impacting on daily life and his experiences at nursery/school, then of course I would get a dx, like with dd. Funnily enough, she got the EHCP and into specialist school without a diagnosis. We pushed for one as he behaviours were quite obvious and we thought that would help her into special school for children with ASD.

IME (severe needs) it is common for the mother to know, but to come up against a lot of resistance from the partner & wider family. I spotted ds1's (severe) autism at 17 months & then had a year of hell from the rest of the family. I used to borrow books from fhe library & hide them u under my bed. DH was the first to come on board with the idea, the rest were behind.

Mind you I eventually managed to secure an autism screen with a specialist SALT when he was 2 and a bit. She diagnosed him with mild language delay & said he definitely wasn't autistic as he was far too affectionate & sharing attention with me & would catch up soon. He was eventually diagnosed with autism about a year later, soon after turning three.

He's now on the cusp of adulthood, still non-verbal, severely autistic & learning disabled (& still affectionate)

We were also once told DD would be fine once she was 4 or 5. Hmm.

Devilish that is exactly the same as my own experience. Even down to the books!

I have seen one case of heart breaking denial. Friends of my dp. Two sons 5 & 7. The 7 year old had the physique of an 10 year old but the language and social skills of a much younger child. We went for a drink with the two boys and their father in a pub garden with a playground in it. The 7 year old had no idea how to play, disrupted the entire playgrund, upset lots of other kids. Father basically ignored it, even when one delightfully ballsy little girl came and demanded an apology. One of the other parents tackled me in the toilet, thinking I was the mum. When I told her how old the boy was she totally backed off, she knew instantly that it was likely SN were involved.
The dad was so proud that they had resisted all attempts to have him "labelled" and were going to keep him in normal school come hell or high water. we don't see them now, but I often think about how that boy is coping.

I was diagnosed at 30 with Aspergers and my mum accepts the diagnosis but seems to think I can just turn off traits of it at will.

Autism should not be described as mild IMO - it may not appear to affect everyone to the same degree but it's still a struggle to live with.

Our experience with DS2 was that we didn't push for a dx until he was 14, but we had good reasons.

When he wss a baby there were several medical issues which resulted in us paying to see a specalist in London, these issues over time became less needy. We did notice that he was developing at a very slow rate in terms of motor, speech and understanding enough that (as a teacher) I knew I had to fight to start the statement process. Once this statement was issued he started at a special school which met all his needs and more so, through his school we were able to access social and sports clubs and as a family we just got on with life, knowing what we needed to do to keep him happy (ensuring I had spare lego bricks in my bag!).

It was only when we started thinking about when he was leaving his wonderful school and the realisation that we weren't getting any younger that he needed to have a formal dx on record, so we went for it.

After 18 months of appointments, school observations his dx came through of ASD and MLD.

I know that we were fortunate that DS was already getting support due to his schooling and I have seen some DC at my school who despite the support we give really need that extra, but I wanted to relay our story to say not all who delay dx are in denial or neglectful, we didn't need a 'label' to change how we parented.

I think op that you need to first realise that the help given to children with asd in nursery and early years is minimal. It can be implemented without a diagnosis and is not beyond a professional in early years. Finding out your child has a significant special need is heartbreaking and takes time to come to terms with. I find your lack of understanding and respect for this quite worrying. Getting a diagnosis for their child will give the parents a name for their childs issues and a limited amount of power to request help for him or her. It isnt a magic wand. It doesnt mean that the people working with him change and become knowledgeable. It doesnt mean he will get therapy that makes a difference. Rather than judge this childs parents and twitter abiut neglect why dont you focus on trying to support this child and his undoubtedly worried parents?

YY Cansu, and years later we are still adjusting with dd.

Also just because a child is Autistic does not necessarily mean they cannot manage in a mainstream environment, around where I love it is very hard to get into a specialist school, it has to go to an SEN panel. The child's needs have to be profound, it's not a case of just transferring.

No, I don't think it's a sign of neglect because someone doesn't agree with your opinion of their child.

Our experience was that some people started suggesting SN when one of our DCs behaviour started to deteriorate in school. His behaviour at home/after school groups had not changed - the issues were only in school. It turned out he was being badly bullied and it wasn't being properly dealt with. He still has issues with stress and anxiety but once the bullying was dealt with properly his behaviour drastically improved.

We wouldn't have been getting him assessed and we most certainly weren't neglecting him. I think if you don't know the full picture and what is going on behind the scenes then you really shouldn't be judging the parents.

There can be other reasons why children struggle to build good social relationships with their peers that aren't related to ASD.

I have had to fight for years to get support for dc1 and dc2. It took 2 years before any support at all for dc1 as I was fobbed off by the GPs and refused a referral over and over again.

When I was called in to speak to the senco when dc had only been in reception for 2 days, and she told me we needed to consider special needs, I literally sat in her office and cried. Finally, someone was listening to our concerns.

They both have a diagnosis now, but has it changed anything? Nope. Not one jot. Still fighting for appropriate support. It never ends.

If the parents are being surrounded by family and friends who are constantly stating "oh nothing's wrong with him" who do you think they are going to listen to? There's also a possibility that someone they know has been through the ringer dealing with a child with SNs, and they are loathe to open that can of worms. Not saying it's right, but a friend of mine has a child with some difficulties that could possibly be SNs. Is she having him assessed? No. Why? Because she has seen everything we have been through and sees our dcs still not being supported. It hasn't exactly inspired her to put her child on the rollercoaster for assessments.

It's not neglect, by the way, to disagree with professionals regarding your child. I disagreed for 2 years with the GPs at our surgery regarding my dc1, as they said that he was fine.

He now has a diagnosis of a number of SNs, so clearly I was not neglectful. I was CORRECT. And the GPs? Still happily fobbing off other parents. I know who is neglectful in that situation, and it's not me!