hi all really need someone to talk to or advice i don't know what to do next my 12 year old son has been under the cahms services since the age of 6/7 the school nurse refferred him when myself and his class teacher raised concerns about him,they then refferred him to the boathouse to be assessed for aspergers by the age of 10 but they said after there assessments that although he shows some signs of difficulties that can be seen in people with aspergers there wasn't enough for a diagnosis,mainly because he scored average in some things such as they said he can show some emphathy and also facial expressions in the assessments they came to the conclusion that he just has anxiety and this is made worse by him having sleep problems so they refferred him back to cahms service to have more concilling with some of his anxieties and to a peadriction who prescribed him meletonin to help him sleep,what drives me mad is that they think everyone with aspergers are automatically going to act exactually the same,whether you are on the spectrum or not you are still an individual person,i didn't agree with there decision and nor did a few of his teachers at primary school he was attending at the time including the senco teacher who even went for a meeting with me at the boathouse to ask that he is re assessed which they did but still they said the same thing.I have recently asked cahms if he can be referred back to the boathouse because i still believe that he has aspergers and so do other family members,he has a older cousin who is diagnosed with aspergers so we know the signs of it,he has been going to cahms still since he was last assessed and has overcome some of his anxieties mainly quite a bad phobia he had of dolls and mannequins,but still i see the same signs in him,one of his biggest difficulties is school,at primary school they were very supportive and helped him alot but now he is at high school he isn't getting so much support in year 7 he was in the foundation(senco) class and he was still having some struggles but was coping better with the work and going to classes but then they decided near the end of year 7 to put him into the mainstream classes and he is really struggling he is getting detentions and put on report constantly and he was even excluded for a day last week,the main reasons he is getting detentions is because he hates the lessons that much he is trying to go to one of the support teachers for help which is resulting in him being late or even refusing to go to the lesson completely,he is also getting detentions because his teachers say he isn't trying to do his work but he says he is trying but when the teacher explains what they have to do he does understand what he has to do most of the time but struggles to put it from head to paper if that makes sense,he just starts to feel really wound up like he needs to get out of the classroom,plus it doesn't help as in these class unlike the foundation class he was in it is more noisy which doesn't help when he is struggling to concentrate,i have had meeting with his head of year but they said they won't put him back in the foundation class as he is to clever for the work in there,they basically said the only way he could get more one to one support is if he had a statement saying he needs it as it is all down to funding,but i have now had a letter yesterday saying the request of re referral at the boathouse has been denied as he has already been assessed,what do i do now??,any advice would be appreciated i just do not know where to go from here but i know i cannot give up until i get him the diagnosis and the help he needs,because until i do he is suffering and struggling ,wondering if there is anyone else in the same/simuilar situation
thankyou for your replies,yes thats it i am just hoping that he can get the extra help and support that he needs in school now with the help off send,like you have all said it doesn't matter so much him getting a diagnosis as long as he has the support he needs in place which he has plenty of it at home and from extented family too it is just mainly school that we have issues with,fingers crossed that when i contact them they can help us,thankyou for the info/link recomninantsocks i will take a look at it now.
If he is getting support then the value of having an autism diagnosis is debatable as Iridessafay says. You can always try again later on if the need arises.
hello thankyou for your replies i haven't been able to get on here since i last posted,since my last post i have spoken to my sons keyworker from cahms about how the boathouse has declined him being reassessed and she has now suggested i contact a place called send who are an organsiation who help children/parents to liason with schools etc to hopefully get the school to atleast do a educational needs assessment with an educational physcoligist ,since alot of my sons problems are focused on school at the moment she thinks this will be a good idea but unfortunatly i have to wait until this monday when they are there to contact them,she is still going to keep him under cahms services for the time being aswell,its like she said i have had so many meeting in school lately with my sons head of year, and even deputy head of the school and they have said they would put different things in place to help him but haven't done most of what they said but hopefully with some back up they will listen and start to do more action than words,i am just starting to fill with dread again now with only 2 days till he is back to school again as he is always worse once he has been off for the holidays just wish i didn't have to send him atall ,the only subject he does like or look forward to in school is music as he is brilliant at playing guitar
Like CC and Longman, I grew up without a diagnosis and survived school as the schools I went to were probably better for someone with Aspergers than many schools are now. Modern life has caught up with me so I have had many years of undiagnosed ASD followed by a couple of years since diagnosis.
Is there any way to move him to a different school? It is possible that he might survive well in a more structured, better disciplined (i.e. rules and expectations are set and observed rather than ignored). There are schools that have specific provision for ASD within the mainstream environment but I don't know how many schools have this - do you know if there is anything in your area with that?
Agree with Longman that having a label may be a good thing or may be a bad thing - it gets you extra help but it can also encourage a dependency attitude that may do more harm than good. A diagnosis may also be simply wrong as CC says. We can't say whether your son will helped or hindered by having a diagnosis/label.
My experience of school was just the same as Longman's was. I marvel sometimes that I had any friends at all, yet I always did. However, that didn' take away my wider experience of being targetted and bullied for my (then unrecognised) difficulties, and I suffered the range of bullying behaviours, and I include that of some teachers whose subjects I had no interest in whatsoever.
I think that everyone recognised my abilities. Certainly, I have high intelligence and because of my eidetic memory I was able to record and spew forth the recordings at testing time, which gave the appearance that I was 'learning' as they measured and understood 'learning'. Similarly, because there were activities that I joined in with, it looked like I was 'functional'. For instance, I always loved music and was a member of my church and school choirs, I liked 'acting' so joined in with house and school productions ('learning' lines was, of course, easy) and no-one expected Oscar winning performances.
This is where I take such great exception to claims of 'high functioning'. My functionality, when measured against an average, wasn't 'high' at all, it was rubbish. What does this 'functionality' relate to? I have certain exceptional skills and abilities, but I can't sustain a conversation with a stranger for more than a few minutes. I can discourse on philosophy but am totaly puzzled by the average 'Sun' reader. I fail to understand how people get a driving licence and then abandon every Highway Code rule on gaining it.
I'm with Longman in taking issue with the way that young ones are assessed, which means that stories such as yours are not rare, and they should be if diagnosis was properly effective. I wonder if the principal of the right to a second opinion might mean that you could request assessment from a completely different team? In my experience, once they've 'diagnosed', so-called 'professionals' won't change their minds easily - the staggering arrogance of some people leaves me to wonder if they're far more 'functional' than intelligent.
At the same time, I would support the caution that an incorrect diagnosis of AS can be just as damaging. You have drawn parallels with a known AS cousin, have you also , drawn parrallels with a known non-AS cousin? We often say that most people can demonstrate AS traits. We also make clear that 'traits' alone are NOT diagnostic criteria, diagnosis is a holistic thing and takes a highly trained and experienced assessor. It seems to me that some 'assessors' simply demonstrate the adage that 'a little knowledge is a dangerous thing', they show so little understanding. 'Knowledge' and 'understanding' are NOT the same thing at all.
Most importantly, what does your young man have to say about it, does he accurately describe his daily experience, or just suffer from it?
I thought my reply might have stimulated more discussion over the issues of trying to get a child diagnosed. In the absence of anything, did my solo response help or confuse, Nikki25121?
It does make you wonder how seriously schools take the Government's assurances (window dressing) about better and quicker diagnoses.
However there's a moral dilemma here. Getting a diagnosis is the only way to get support for the kinds of difficulties manifest by children who might be autistic.
So if he doesn't fit the diagnostic criteria (or some SENCO's bizarre interpretations) he gets no support whatever. Left, as they say, to sink or swim.
Also you cannot really treat a child for autism if he/she hasn't got it - that might have all kinds of undesirable consequences.
However, the notion behind getting an early diagnosis is getting the right support. That means lots of (well meaning?) therapy sessions - thinking in pictures etc, which can be soul destroying for kids whose needs are maybe not sufficient to have to think things through that way all the time.
It may mean being kept back educationally, missing classes that abler peers progress by. It may mean limited horizons through having to be in a special room with less able kids, where the supervision is determined by the neediest - stultifying for many abler kids on the spectrum.
And it increases the risks of being treated differently by peers, and therefore the potential for being bullied. This is an important point because one of the objectives I thought early diagnosis had was to PROTECT vulnerable children. I'm not convinced that current measures do that.
I grew up without a diagnosis. Of course I got bullied and was held back a lot by my difficulties and had to carry a lot of 'emotional baggege' through life as a result. But I'm just not convinced that diagnosed kids are actually that much better off.
Would it matter so much if someone on the margins of being diagnosable didn't get support?
Are there areas where informed support can be given at home that enables someone without a diagnosis to cope better?
Is diagnosis the be all and end all that leaves lots of parents in limbo for years trying to get one, when by the time dianosis is secured, a lot of damage has been done already, and the intervention is late in the day?
Someone who is not diagnosed but has autism traits could surely be supported for the traits?
What is lacking is guidance on support for autism traits, independent of whether there is a diagnosis.
