Teacher is lying

concerned43

peachyprice wrote: »

So he was diagnosed with ASD at 4, but you refuse to accept that?
That is an extremely selfish stance to take.

What? have you read the whole post - I do not refuse to accept it - I simply do not want my child labelled with it! and the point I was making is that CAMHS said he did not have ASD - which shows how much they know!

peachyprice

Yes, I did read the whole thread.

You are refusing for him to be diagnosed (even though he was at 4, but you're keeping that to yourself) because you don't want him labelled, but you're upset that he's was mis-diagnosed, then even more upset when CAMHS withdrew that diagnosis (that you didn't even want).

Sorry, but with a son who has learning difficulties myself I cannot understand why you are refusing a diagnosis (label) that will give him access to resources he clearly needs. It makes no sense, the child is struggling and all you're worried about is a 'label'??

concerned43

peachyprice wrote: »

Yes, I did read the whole thread.

You are refusing for him to be diagnosed (even though he was at 4, but you're keeping that to yourself) because you don't want him labelled, but you're upset that he's was mis-diagnosed, then even more upset when CAMHS withdrew that diagnosis (that you didn't even want).

Sorry, but with a son who has learning difficulties myself I cannot understand why you are refusing a diagnosis (label) that will give him access to resources he clearly needs. It makes no sense, the child is struggling and all you're worried about is a 'label'??

so what access to resources do you think my DS would be entitled to and why, apart from his anxiety, would he need them?
and apart from his anxiety what exactly is my son struggling with?

Amanda65

My only experience of this is when I was Chair of the SEN committee as a governor at my son's school so am under no illusions that I understand the situation fully but would like to see if I can help but wonder if you could answer the following please concerned43.

1) Your DS has anxiety issues yet outside of school seems to function very well with all of his activities / interest etc. so how does the anxiety manifest itself and is it only apparent in school? If not what strategies etc. are in place to help him outside of school to enable him to cope?

2) DS was diagnosed with ASD aged 4 - on what basis? How has this not been part of his medical / school records (an a little confused about how the school cannot know) and is the anxiety as a result of the ASD or supplementary to it?

3) What do you think would help DS at this moment in time? Could he be referred for CBT through the GP rather than CAHMS?

4) With regard to 'labels', I know from my time on SEN committee how very difficult it is to get extra funding for students with extra needs and without some form of formal diagnosis the schools hands are tied as they cannot apply for the funding and therefore will not have the extra resources you think your DS may benefit from. If they have his records that say he has ASD, and you want extra help for him, they are not goign to be able to provide that without money and I am at a little bit of a loss to see how you expect them to.

I'm not trying to be critical, and if you think I'm being too nosey feel free to ignore post, but I am genuinely intrigued by your current stance.

peachyprice

concerned43 wrote: »

apart from his anxiety what exactly is my son struggling with?

Quite a lot.

concerned43 wrote: »

DS has the following:

Will not look people he does not know well in the eye
Will not communicate with people he does not know well
Does not understand the meaning behind what people are saying i.e. he cant tell if a remark made is a threat, compliment, joke, sarcasm etc
Cannot participate in group work
Quick thinker but slow in communication his thinking
Can not tolerate people for any more than 5 mins
Does not like to play with peers
Does not like anything to do with using his imagination
Can not read peoples faces or decipher what they may be thinking
Shows little/no empathy
Becomes obsessed with one subject and will only concentrate on that.
Finds it difficult to write
Will not read fiction
Has a food fetish - will only eat certain foods and they must be the same brand and purchased from the same store.
Has NEVER slept well and is prone to night terrors
Has high levels of anxiety over silly little things
Prone to panic attacks
Cannot gauge roads and has stepped out in front of cars

concerned43

Amanda65 wrote: »

My only experience of this is when I was Chair of the SEN committee as a governor at my son's school so am under no illusions that I understand the situation fully but would like to see if I can help but wonder if you could answer the following please concerned43.

1) Your DS has anxiety issues yet outside of school seems to function very well with all of his activities / interest etc. so how does the anxiety manifest itself and is it only apparent in school? If not what strategies etc. are in place to help him outside of school to enable him to cope?

His anxiety is mainly at school and this is because he cannot understand his peers - he cannot interpret their comments/questions etc. His daily life at school changes daily and he cannot deal with change. His outside activities are fine because I ensure knows exactly what to expect while at the activities i.e. who is going to be there, what he is going to be doing there, how long he is going to be there for etc.


2) DS was diagnosed with ASD aged 4 - on what basis? How has this not been part of his medical / school records (an a little confused about how the school cannot know) and is the anxiety as a result of the ASD or supplementary to it?

He was not formally diagnosed! he attended a private school (pre school) and was assessed for junior school. They told me he was not suitable as part of there assessment highlighted that DS has autism and was given the same of a private organisation who would formally diagnose him. I believe his anxiety stems from his ASD.

3) What do you think would help DS at this moment in time? Could he be referred for CBT through the GP rather than CAHMS?

A combination of medication and therapy. This is in line with GP's recommendations!

4) With regard to 'labels', I know from my time on SEN committee how very difficult it is to get extra funding for students with extra needs and without some form of formal diagnosis the schools hands are tied as they cannot apply for the funding and therefore will not have the extra resources you think your DS may benefit from. If they have his records that say he has ASD, and you want extra help for him, they are not goign to be able to provide that without money and I am at a little bit of a loss to see how you expect them to.

I moved 30 miles so DS can attend this school because it has its own special needs unit, which DS attends!

I'm not trying to be critical, and if you think I'm being too nosey feel free to ignore post, but I am genuinely intrigued by your current stance.

Don't mind answering intelligent questions.

daska

Right, so, in with your letter you need to put in a copy of his diary of events demonstrating that the Head failed to ask the relevant questions and the efforts to get him out of the house are unnecessary.

BUT

I've come to this the long way round. I am now seriously regretting not pursuing a diagnosis for DS1. The battle for extra support is getting substantially harder - simply because he wasn't formally diagnosed by the NHS. And it's important to remember that it's not a label, it's a diagnosis. Would you not bother to tell a gym about heart problems or a restaurant about allergies? The diagnosis is a description, not a limitation. With DS2 there was no question, there was something obviously wrong from very early on and the battle has been to get that recognised. He now has a statement and is on the waiting list for ASD assessment but there is little doubt that it will happen. If I'd known with DS1 how limiting it is to NOT have a diagnosis there is no way that I would have resisted 'labelling' him - the support my sons have recieved as a result of diagnosis (albeit informal in DS1's case) has made their lives better and therefore less stressful and happier.

Is it possible that if you'd been more open about his ASD diagnosis the school may have understood his needs better, treated him better and therefore he wouldn't be suffering from anxiety? (I do ask that somewhat tongue in cheek as it sounds as if the Head is about as empathetic as the one at DS2's last school)

Fosterdog

OP this will be harsh but one of my brothers has ASD and all through school he was just labelled as naughty and a bit slow with certain areas of development. Nobody would listen when my parents tried to get him assessed and he wasn't formally diagnosed until he was 19.

This meant that his whole life nobody had treated him as ASD and found the right ways to help him so at 19 he couldn't do anything for himself. He had the same food issues as your DS, and the social ones. As he got older he got quite violent as his frustration was too much for him to deal with.

All it would have taken to help him get further in life was a formal diagnosis at a younger age therefore opening the doors to the right support for him and the rest of the family, without it has put him 19 years behind where he could be now.

At age 35 six months ago he cooked himself bacon for the first time in his life, he had never prepared his own meal before and it has steadily grown from there and he can cook a few different food items so giving him a menu of maybe 8-10 meals he could live off if he had to cook from himself. He will not eat veg at all and his health suffers as a result of his poor diet but again he would starve himself before eating something he doesn't want to.
He has no concept of his environment needing to be kept clean, personal hygiene is sometimes an issue (although greatly improved from 10 years ago). He has no future career options, little chance of ever developing any sort of relationship.

We know that this isn't how his life would have turned out if he'd had the right help just because things have improved a lot since diagnosis and continue to do so, the only downside is the 19 years where nothing was done caused irreversible damage.

The way he is going he will still be living with my parents until they pass away and then the plan is that his care will pass to me.

Is that the sort of life you want for your son? Without the correct diagnosis and the right level of help and support that's what you may be setting him up for.

The head may have been a bit out of order but he sound like he's trying to help your son where you refuse to.

puddy

concerned43 wrote: »

so what access to resources do you think my DS would be entitled to and why, apart from his anxiety, would he need them?
and apart from his anxiety what exactly is my son struggling with?

why are you so keen to see his anxiety and asd issues as completely separate things?

why are you so reluctant to consider attachment difficulties which could be in relation to the above things?

what is it you actually want services to do for you and your son?

am i getting confused or are you the same parent that had a lot of problems with his primary school?

thegirlintheattic

concerned43 wrote: »

Don't mind answering intelligent questions.

From what you have said the anxiety issues seem to stem from classic ASD symptoms (social problems, communication and changes). This maybe why CAMHS is pushing for a diagnosis.

In terms of support, most money for SEN support comes through statements, like Amanda said. It maybe beneficial to get a diagnosis (even though you don't want a label) and this will enable him to access funding for the support he needs.