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.

zzzzz, it may not be that they're worried about getting a diagnosis if they go down that route. In some cases it may be that they know the reasons for their child's behaviour aren't down to ASD (because they know what is causing the behaviour) and they don't want to waste time going down the wrong route and not getting the immediate help that would actually fix the problem. (In our case dealing with the bullying!)

My child has severe Autism diagnosed at 2 years old, yet even with this diagnosis we still get people thinking the diagnosis isn't correct because as they put it "but she isn't naughty or violent".
It may be why some people don't want a label, they probably find it all so confusing as there are so many myths, especially where ASD is concerned.

ds2 is severley autistic i was in denial for a long time its hard to accept your child has life long disabillities hes non verbal goes to a special school etc i hate the whole low /high functioning bollocks too .

I'm so frustrated with this I've come right to the end to comment without reading the rest of the thread.

I'm dyslexic, it was picked up late ish about 10 took a lot of fitting on my parents part to get it diagnosed, my high school was actually very good lucky. Now I've watched my children carefully just in case it can run in families. They seem fine, unfortunately my niece isn't she seems worse then me.

They have know this for at least two years now. My sister despite knowing what I went through at school has just gone with letting the school give minium support I've tried suggesting they get a private assessment. But she doesn't lisson to me, at 9 years old she's now well behind. After talking her to the doctors last summer they suggested she needed assessment and that private in there area would be the way to go as waiting for the Lea it wasn't likely to happen. Six months later she's still not had it done.

I'm not happy I could rant and rave at her they go on bloody holiday to Florida every year so it's not like they don't have the money. This time when she came back my sister said she didn't want to go back to school as she now notices that she can't read and tell the time like all the other children.

I do just want to shout at her about helping her child rather then going on bloody experience holidays but you just can't tell some people. They have known for at least two years she could have had a private assessment then. That's what I would have done. But then I've been there I was that child who had to struggle.

Sorry for the rant, I just can't rant at my sister as it doesn't do any good she seems to think she's doing everything she can.

We are in the middle of trying to get an assessment for DS2 in YR5.

He has struggled socially since he was in pre school. He also had issues with pen grip and coordination and balance, and had meltdowns round flash points - mainly if someone though he had done something wrong, or round transition times where there was a lot gong on. His concentration was poor too, unless in a topic interesting to him (engineering/science), and he has terrible issues with his short term memory in school. He is clearly capable of achieving really highly in school, but he would need support in place to help him unlock his potential.

We have consistently raised concerns with school, who refused to admit there was any issue as he is academically able and so they said they could not refer as he was not below their achievement threshold for referral. GP refused to refer as they said could not do so without school support. This went back and forth until last year when a lovely NQT raised concerns with us. I was so relieved I cried.

School did not exactly put a rush on any investigations after that though. He is not a naughty boy, they don't get complaints from other parents, and he is lovely and funny and caring, so for them he is not a priority. Especially as he is doing ok academically and not likely to stuff up their figures.

I managed to finally get a referral from our GP to a consultant for DS2 being hyper mobile (only because I really pushed and kicked off). Luckily the consultant we saw was a rheumatology consultant with a general interest in SN. He then set the ball rolling and we are going through hoops now. Every medical professional I have seen since the consultant appointment says it is clear that DS has SACD of some description, probably dyspraxia and possibly ADHD also. They are gobsmacked school haven't pushed for an assessment well before now.

After a visit from the CLASS team from the LEA, and a strongly worded letter from a development pediatrician at the clinic the hospital have referred to, plus physio reports, school have only now sent off the referral for a MAAT assessment, which means he will transition to high school with no support in place, as waiting times from the referral are 18 months.

We have been badly let down - I can see though from the outside why it must have looked to someone that we were in denial - after all DS2 is 10 now, and it's only been since last April that there has been any movement or help on the horizon for us.

People were probably looking at him and us thinking we didn't give a rats arse.

I know of someone who has a child who is very obviously autistic. They know it but can't handle the fact that their child will be "labelled". He is home educated so won't be flagged by any external services. As a parent with a child with autism I think long term they are doing him a disservice.

Notsomarky, that's the short of hopes my parts had to jump through for me and it angers me that the system is still so rubbish, 30 years on. I have a box of letters my dad wrote at the time with everything in.

I was lucky though I was picked up last class at primary so year 6, and the high school where willing to put support in place before my assessments where done. They where very good, my parents also paid for private English lesion for me as well.

My sister knows the family history, one of my parents was possibly dyslexic to. It was very clear her daughter was having problems really early on. They where concerned the school want doing enough but have never pushed the school to do anything.

Maybe like me until my dad gave me that box of letters she doesn't know what it takes to access the right support. But they can pay, They have been told to pay for an assessment, so I'm not sure why they haven't done it already. I have friends who've had to do it seems like it's quite common to do that.

wash I suspect the Bs were because she kept herself to herself, didn't play up and merged into the background (what I would have done in her situation) so when they wrote the report they couldn't remember anything much about her. I managed to get As for my report for one subject in Secondary without handing in a single piece of work all year! On the other hand my ds got Cs for effort for several subjects last year which made me cross as they knew he had SN and the effort for him to write is so much higher.

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.

I'm supposed to be protected against discrimination for being female - yet I've been paid less and had training denied me because of it and been asked inappropriate questions during interview. Getting redress for was IME actually quiet hard and would have labelled me a trouble maker - so I worked round it and moved on as soon as possible.

Luckily I don't have to tell employers about the dyslexia an dispraxia.

DD1 Y1 teacher kept making derogatory remarks about maths to DD1 - maths was hard and for boys - her enthusiasm and ability went down hill and when it got hard she wanted to give up. Obviously we stepped in as it was an areas she'd loved and been good at previous - still took work to get her back on track and get past all those "ideas".

Last thing I need is people telling her she's not academic or doesn't/won't enjoy reading. As a diagnosed dyslexic I have people try and tell me that what I'm like despite huge evidence to contrary.

DS self identifies as shy and used it as a reason not to do things - I didn't label him that but couldn't stop others doing so and he's picked it up - it's now something I have to work against to get him to develop his social skills.

I can't control how other people react to a diagnosis - it's beyond my power.
It could be a positive reaction or it could be one based on ignorance and preconceived ideas.

A private report for dyslexia around £400-500 and there are people who identify as teachers on here who admit to not bothering with private assessments and it's something I've found parents who have gone down that route complain about.

Plus I know - thanks to me working with the DC, the DC self awareness and their teachers - the areas they struggle with so don't need a report to highlight them.

Mine can access at home and school appropriate support - a diagnosis in our case won't change that yet. They are also coping - actually they are doing very well.

If they weren't coping or diagnosis opened more areas of support seeking diagnosis would be a much easier decision. It's not always a clear cut decision.

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?

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.

My son was diagnosed formally last summer although I'd suspected difficulties from him being about 18 months old. It's helped us access services but has caused a fallout in the family, with my mother refusing to accept it.

is what happened [[http://www.mumsnet.com/Talk/_chat/2528842-My-mother-I-dont-know-what-to-do?pg=1&order=]]

Crap link!

www.mumsnet.com/Talk/_chat/2528842-My-mother-I-dont-know-what-to-do?pg=1&order=

Some parents do seem blind to this. But to be fair getting a diagnosis is a very hard and long process.

People think having a diagnosis opens up a whole of help - it doesn't. There is very little funding for help.

I had a HT tell my Dh in his last week of juniors he thought ds1 had HFA. I went to the GP three times and school twice and talked to my toddlers peadiatrician but he couldn't get a referral to be seen ( dispite having two siblings with SEN)

I had to go private after six years on the NHS waiting to see if my second child has asd. Then his diagnosis ( not asd) is completely ignored by the school and LA and I had to appeal to get him a statement and appeal again to get his diagnosis added into it.

Why put yourself through that? I was told at my appeal by the LA that I was a poor parent and had low aspersions for my child. I would be better off ignoring needs. Maybe then if the school wasn't so busy blocking his funding under pressure of the LA they might be trying to prove to me that he was struggling?

But if you've been told that the Lea won't pay and you need to (I don't know who told them this she doesn't tell me everything) would you then drag your heals over it. They do need to have her assessed to determine exactly what he issues are, they know it's probably dyslexic and possibly dyscalixa as well from initial assessments but not exactly to what extent. Probably quite serious as she's already behind quite a way and struggling. School say they give some help but then my sister find that her support has been used for other things.

I could see why it wouldn't always be helpful for everyone.

I guess it frustrates me as it was so hard for me to learn to read at 10 years old and to see her slipping further behind all the time is hard.

Home educating my autistic child is the best thing I could have done for him. I know loads of HE parents of autistic children who think they same.

Do you mean the home educating is a disservice yankee? Or preventing him from getting a diagnosis.

So she's attending school and the school isn't supporting her? The LA absolutely should be paying for assessments and support. But you're saying she doesn't tell you everything, so perhaps she actually is trying to get support but is not having success. Schools are not well known for accepting an outside (private) diagnosis either. Clearly your sister is checking into it, or she wouldn't "find that her support has been used for other things."

I imagine it frustrates your sister too. Fighting schools is long, exhausting, and rarely rewarding as even when you win the fight for assessment, then comes the battle for provision/support, and then if you win that, you have to battle to make sure the support is actually given!

I totally understand and see what my parents did for me was amazing. But they also paid for private tuition as well. Which I'm sure made a big difference for me. Having one on one teaching can be so helpful I also got that at high school thanks to a really good high school.

Although can't really credit my primary school as they where the ones who miss diagnosis me until my last year. When I had a teacher who had worked with SEN kids before. He picked it up, the school it's self was not that good. And I don't think much has changed many primary aren't good at picking up these issues even now.

Which is very sad as with the right support lots of children can do so well. But the support just isn't there.

There's also a very real climate of "you're only the parent, we're the professionals" in which parental concerns and requests for support are dismissed and ignored. That's not even addressing the issues of funding and staffing, which are used as excuses for a lack of support.

I am constantly being told to listen to professionals ( ie school) who in turn don't listen to the people with PhD's in hospitals.

I heard that our school excluded a boy with obvious learning difficulties- which has led to a climate of fear. Because their is a threat that kids could be excluded if they are too much hard work. The HT told us to leave after we won our last appeal. I told some of other parents and that's when they agreed on the fear culture there.

We also had the experience of people ignoring other issues to focus on a SN diagnosis. DS was being bullied but that was ignored. Once he was moved away from the children responsible he became much more sociable. We had to fight to even get his deafness recorded on his school record and kept being told that lots of kids have glue ear and that it isn't serious. Sometimes it is serious and DS was one of those times. Having those definite, confirmed, issues ignored by staff who were so keen to see autism was very frustrating especially as it meant DS wasn't actually getting the support he desperately needed.

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".