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.

Oh and you know this how nataleejah? I would be extremely careful before making such hard judgments on other parents.

As this thread shows people often fight against a diagnosis, rather than seeking it for spurious reasons.

You should read the "this is my child" campaign..the myths section. Namely the myth "behavioural disorders are just an excuse for bad parenting".

www.mumsnet.com/campaigns/this-is-my-child-myth-1-behavioural-disorders-are-just-bad-behaviour

I have Aspergers, and see how parents can be in denial. My father has the same pattern of obsessive interests and eats few foods. These days, I would be a child with a feeding disorder. My mother was just thankful I would eat more than my dad. My pet theory is that Aspergers runs in families.

I'm one who doesn't want a label for my child. It's only in the last few weeks (since I have taken him out of school to home educate him) that I have had my lightbulb moment and realised that he has asd. It's something I have been aware of a a possibility since he was very young, and I thought he seemed to be functioning pretty normally. However, he is 7 now, and I can no longer stick my head in the sand.

He's academically bright, but his social skills are pretty poor. His behaviour has always been difficult to manage, but I thought for a long time that this was due to his father's very poor parenting (happily, I have been a single parent for over a year now).

I don't think ds1 would get a diagnosis very easily - he presents as too "normal". I'm probably the best placed person to help him - I have a lot of coping strategies as i am almost certainly on the spectrum myself, but only realised this when I got a job providing 20 hours a week 1:1 classroom support for a little boy with Aspergers - that little boy did extremely well under my care, despite his teachers trying to use all sorts of inappropriate strategies, and his mother was no end grateful to me.

In my view, a diagnosis is a route to getting appropriate support. I can provide appropriate support much more effectively than the school or camhs etc. (In fact, when I asked for support from camhs because of his behaviour, their response was to recommend that I did a parenting course for mums of children who have experienced domestic violence - the same response my friend got, even though her little boy presents quite obviously as having autism and I think he needs 1:1 help at school).

A diagnosis isn't a magic bullet, and can stigmatise the child without the additional needs actually being met.

I know I'm rambling, but it is the middle of the night - sorry if I'm not making sense!

I know it's a hard journey to acceptance intothe

But I do have issues with seeing a diagnosis as "stigmatising". That is a wrong and harmful way of looking at ASD and refusing a diagnosis only perpetuates this.

It is indeed the middle of the night though so I need to try and sleep

Should add that ds2 (aged 3) is much more obviously "odd" - I can deal with him perfectly well at home, and find lots of opportunities for him to socialise appropriately, but his preschool staff just keep going on about his behaviour being bad - they don't know how to deal with him despite me telling them that I think he may be on the spectrum. They think there might be a problem with his hearing, for example, as he ignores their instructions. I'm confident his hearing is okay - he just tunes them out because he doesn't want to hear them! I'm considering taking him out to home educate him too. ..

Does this mean I am avoiding a diagnosis and not meeting his needs?.. I don't know... I hope not. My feeling is that I know just as much about child development as his preschool staff, but am much more sympathetic to his individual needs. ..

I don't have any experience of SN, but with MH problems (with which I am familiar) there's absolutely no bright line, and diagnosis can bring attendant problems (and I'm not talking about stigma). In most cases parents have their kids' best interests at heart, and that it's for a parent to judge that their child's needs are being met. I think you have to be very slow to judge the parent of a child with any kind of condition, diagnosable or not, for how they deal with it.

Yes, by stigma, I meant all sorts of attendant problems in the future. I'm not worried about what friends, neighbours and family think - but I am concerned about it showing up on a job application for something specialised in the future, when ds1 has developed all the coping strategies he needs and it doesn't affect him in the same way any more. If I had a diagnosis, it might prevent me from working as a childminder/ youth worker/ playworker etc. because people would worry about a lack of empathy because I might not pass the initial checks - yet I can be just as empathetic as somebody who does not have traits of autism, maybe even more so than some because I am aware of my limitations and work twice as hard at this as most colleagues.

At 8 weeks we have a recording of DS bableing. At 5 months we have a video of him communicating via eye contact and all rather normal interaction. By 12 months this was all gone. By 18 months he was totally withdrawn and by 24 months we were seriously concerned and I went ahead and changed pediatric groups because we moved (I am in the US so no GP for kids). New doctor was picked based on his training in SNs, had a shit fit and called the early intervention. He called on colleagues to get help started because he was seriously concerned about autism. Our doctor was fab because he called DH and told him to meet us at the office right away because he wanted to talk us through the process. DH was in denial with his bloody mother telling him there was nothing wrong with DS. The doctor told us both straight that there was something wrong and we needed to work together to get him as much help as possible. Sadly the doctor left the practice in October last year. Good news is that I found another fab doctor who has a special interest in SNs.

I have always thought of myself as a humble parent. I know my kids are not perfect and although I've been told DD is extremely smart, I am smart enough to know that at 4 you can't determine if a child is smart or not. I'm also smart enough to know that if someone who is professionally qualified tells you there is a problem listen to them. I am a parent because I delivered a baby. Not much of a qualification when it comes to assessing my DC against what is normal.

IMO it is a form of neglect when you don't listen to professionally qualified people who are there to help you. If you don't agree you get a second opinion, you do not walk away. As a parent I have an obligation to do the best for my DC. That means being humble and putting pride aside.

Well people who would bar you from a job due to a perceived lack of empathy because of an ASD diagnosis would be acting illegally and also ignorantly as ASD does not mean a lack of empathy.

I do sympathise but my view is fundamentally that if society has a wrong attitude we will perpetuate it by refusing a diagnosis.

Undoubtedly you want the best for your child, I in no way question that,of course.

X posted I was addressing intothe of course :)

Think will give up on sleep thanks to DD banging and sore neck.

Plus although obviously you hope he will "develop all the coping strategies he needs"he may not do that, especially without a diagnosis and proper understanding of who he fundamentally is.

Sorry if I sound harsh.

Also re DS2 intothe. .yes preschool don't sound great. Avoiding diagnosis and home educating him may work for now but I would worry about far down the line when it's not a matter of preschool or home educating.

Anyway just my humble opinion and again I know you are clearly doing what you feel is best for your children and putting a lot of soul searching into it.

In my experience it is the other way around. Parents know there is a problem but don't get listened to or get told to wait and see. For most children I know diagnosis did not mean extra appropriate support.

Unless you are prepared to fight for it and probably spend a lot of money doing so.

My son is 3.7 and has fairly severe asd and learning difficulties (expect to start special school in September). He currently goes to a special needs preschool. In my experience most parents are fighting tooth and nail to get a diagnosis for their children but you do get the odd one or two in denial- often because they have an unsupportive partner. I think for some reason as sexist as it sounds men often have more trouble accepting their child as Sen or asd than the woman and this can lead to a lot of friction and refusal of help.

Saying all this however my ds diagnosis hasn't really made any difference - he wouldn't engage in salt and had to be withdrawn from speech group as he gets too distressed and none of the help and strategies work on him. The only main thing that intervention has helped with is getting him his ehcp so I could apply to an asd specific special school.

I come from both sides of the fence on this one - DS1 ADHD and DS2 Asperger's and a primary teacher.
As a parent we did what so many families do which is adapt around our children and our life was just 'normal' for us. It was when they went to nursery/school that we realised how different they were in comparison to their peers. As a teacher I knew there was something and had my suspicions, but decided to see if it was a developmental/maturity issue. It wasn't and I fought tooth and nail for them. CAMHS were awful for DS1 and all they said was "He'll always be like this. " So we were left to research and help our pinging off the walls child ourselves with no support because he had no diagnosis. DS2 was a different story - no problem (when we eventually got an appointment when he was in Year 7 for God's sake!) with a diagnosis, which meant that in secondary school he got the support he needed - and importantly, a quiet place for his GCSE's and extra time. He needed this and without the diagnosis, he wouldn't have got it. DS1 also needed this, but no diagnosis = no support at school.
As a teacher I get so fucking angry at our SENDCO who tells parents that a diagnosis (because she can't be arsed to do the accompanying paperwork) won't make a difference to how our school supports them. I always tell parents that as a parent of SEN children, a diagnosis will open doors to support and rights that their child has a right to. I also get so angry at the medical professionals who say they don't want to 'label' children - if it was cancer they wouldn't have a bloody problem. The more they bang on about 'labels' with regard to 'mental health' needs as opposed to physical ones the longer the stigma will stay in society. No-one is embarrassed to say their child has Down's or MD or CP, it should be the same for everything like ADHD, ASD etc. It's no wonder that parents stay in denial.

intothe your DS might not develop all the coping strategies he needs at a young age though.

It's bloody hard being an adult with an ASD. It's even harder when you're undiagnosed. Whilst my mum suspected ASD, she thought I was 'coping' so didn't pursue it (in fact I wasn't).

Fast forward to adulthood, and being a mother, and holding down a job, and several stressful events happened at once and suddenly I visibly wasn't coping, and suffered autistic burnout, which is what led to my being assessed and diagnosed as an adult.

If I had already been diagnosed and in the support system, maybe I could have got help sooner before it got so bad. Maybe adjustments could have been made so that I could cope. Maybe we could have altered our expectations and not took on so much.

Having the diagnosis has meant that I can ask for appropriate help, when I need it. And if I do slip up and act inappropriately, I have the choice of whether or not to disclose. I don't have a neon sign on my head so the vast majority of people I meet and work with are unaware.

My parents have a 3 year old (surprise late pregnancy) and since he was just over 1, all of the family including my nan have said there is something not right with him.

He hates loud noises, freaks at crowds, dislikes wind and has some really bad behavioural problems.

My parents refuse to see it. However he started nursery at two and all the staff have told my mum, that dbro needs help.

She finally admitted defeat and sought help. However because the health professionals are now dragging their feet to give a diagnosis, both my mum and dad have reverted to the "there's nothing wrong with him. He's just really naughty and uncontrollable" mentality.

I feel sorry for my mum as she has been on the receiving end of violent behaviour from dbro and I know no one wants someone to tell you there is something wrong with your child but I think she needs to open her eyes and see it

Very common I expect.

Dh was recently diagnosed with aspergers, mil was furious and wouldn't believe it!

I think it's because she thinks it makes her look like a bad mother for either not picking it up herself(I noticed the signs and made him seek the professionals). Or thinking it was her fault, iykwim.

Another one who has experience of 'both'

I seem to be the only person who can see it in my own DSs, though people will happily point out their quirks they wont put it all together. DH flip flops, he sees it but sort of forgets about it when he cant.

Yet my parents are and at my own diagnosis (age 29). My mum almost messed up my diagnosis, luckily my psych could see that she was in denial (and it says as much in my report)

Well..

Because you haven't seen reports of meetings they've been to dismissing parental concerns completely.

Because they know the child has receptive difficulties, but EYFS SALT have admitted off the record the only things on offer for the age group are basically parenting groups, and they agree the parent is doing fine with what they can be offered.

Because luckily at this stage the child is happy, so it can wait and see a bit

Because there is no support out there unless the child really truely isn't coping, and this child behaves...so no issue for anyone

Because the parent has siblings with the same needs and has been to every therapy so is confident with support, and is saving any fights for school age i need be

Because the parents professionally support such children and can access off the record advice through many friends they trust

Because they won't be changed

Because they have another condition, and its now a concern that this is what's really causing the problems with memory and language

Because professionals view from a distance, but never really have an honest chat with parents. Have an honest chat with me and I'll have one back, but generally everyone thinks they are the first ones to 'flag' in a fluffy way and I've already had that chat with more people than you imagine. Cba to start over again unless you really will be open enough to say what you really think AND back them up to other professionals, I know where the delays are. I have medical reports that I could paper the loo with with them stated on but they do fuck all for dd. It's one thing to suspect asd and tell a forum/ colleagues...gather evidence in a useful manner to aid assessment THEN I'm chatting with you.

No-one is embarrassed to say their child has Down's or MD or CP, it should be the same for everything like ADHD, ASD etc. It's no wonder that parents stay in denial.
That's because Down's or CP is very clear and visible. With ASD -- basically everyone is somewhere on the scale.
I do understand not wanting a label in the long run -- thins like a certain diagnosis could limit career or lifestyle choices, etc. Its not like flu, when you simply get well and its over.