NobbyNobbs

There are no NAS services south of Surrey, so I haven't received any benefit from their services. I paid my subscription the year after I was diagnosed and didn't even receive the newsletter. Then they called me up, gave me a huge speech on helping disadvantaged autistic children in schools, and when I pointed out they had my contact details because I had AS their response was "well... We can't possibly keep track of that... Will you still donate?"

Hi I am in full time employment. I was diagnosed at 23, got a 25 hour job at 24 on a temp contract and spent the next few years contract and job-hopping to stay employed in the organisation because it suited me and now at 27 am on a permanent contract and working towards my dream job. I think the key to dealing with having AS and managing full time employment is to find a job that you enjoy as that eases the burden a bit to balance out the fact that work is usually harder to cope with for us because of the social aspects of working. The huge advantage people with AS have is that often, if we're doing something we enjoy, we can out-perform people who don't have AS because of our greater abilities to focus obsessively, so it's not all bad on the work front. My official job role is very social-focused, but as soon as my employer found out that I had specialist skills in another area she started shifting my job role around so that now I do hardly any of the social aspects and spend a lot of my time blissfully working on databases. You really do never know where a job might lead. Having AS certainly will have affect your life, but it doesn't have to be all bad. It does take a bit of time after diagnosis to re-assess yourself and regain your confidence as getting diagnosed with AS is very much a process of people ultimately saying "you're not so good at these key functions" and working out that a lot of non-AS people aren't so good at those things either, and they seem to get on alright in life! I have better social skills than some of the people in my office and they don't have any excuse! If your current job really doesn't interest you, maybe you could hang on for now (money is money after all) but start looking for a replacement job/voluntary position related to music or some additional training that would help you take the first step into the music industry.

Hi I'm not sure if there's anyone still around who remembers me from when I was last in here but I thought I'd check in and have a look around again. So much has changed for me since I was last posting on here, it is very surreal to be back in a place that helped so much during and right after my diagnosis

i dont think anyone expects her to make it in mainstream in the long term, unless by some miracle school is a magic switch for her and she can deal with it differently to the rest of her life. we spoke to nursery today and asked them to do 2 things - she has to keep her socks on, if she takes them off she has to put them back on, and she has to keep her uniform shirt on... they freaked out and started saying they couldn't do that because she'd never go for it and she'd just scream all day. yet in meetings they say shes perfectly normal and they have no trouble with her local authority is being contacted to find out what is the best option.

yeah. i was more thinking that she'd go into the mainstream part for now and then move over once things are sorted. since we likely can't get her in a local school anyway it seems silly to put her in a random one somewhere then move her in 6 months/a years time when things are sorted out.

today we had a crisis meeting with CAMHS with regards to K and how to manage her behaviour which is getting worse and worse. the CAMHS person was amazing and we've been referred to a behavioural specialist for an assessment. she also said within 15 minutes of the appointment starting that K was clearly on the spectrum and they're pushing through a full assessment for ASD at the same time despite her being below the age that our county are willing to assess children. all this will be started within the next 4 weeks!!! they're also contacting the nursery to inform them that they WILL be starting a program of getting K to comply and complete structured activities on the grounds that she has to be prepared for school. we still dont have a school place for her, so i'm now trying to look at the wider area for the school that will best meet her needs, but i have no idea where to start. i know some schools have SEN/ASD units attached to a mainstream school and this sounds ideal for K as she is always going to be challenging and need more support than other kids (and other ASD kids because of her background), but i have no idea how you find out what schools have them. does anyone know where i should be looking?

those points were all on my first refusal form. its all down to evidence. unless you have some medical evidence that those situations are so, they will ignore whatever you say and say they do not believe it. i haven't had my renewal back yet so i dont know if my increased evidence has helped but i didn't get anywhere before because i couldn't prove that i had certain problems at home. since we dont live with professionals the only way to get the evidence is to explain the situation to a doctor and ask them to write a report.

we already have something like this, just over a longer period of time because of all the reviews/logs required because she's looked after. i might suggest we set up a book for day-to-day issues. we just dont quite know where we stand anymore. the nursery say shes doing advanced work because shes so clever but this seems to be that they leave her on the computer to play games. but since she can't write her name, draw a circle or line, use scissors or create any piece of work that 'is' something we feel that perhaps they should be concentrating more on basic skills. ideally i would like that they set aside a fixed period of time in each session where she HAS to do art/writing/make something with a purpose/subject. because of her non-compliance at the moment she doesn't do anything like that. the nursery is child-led so they dont require her to do anything, and she does even less (she wont wear the uniform and wont eat her lunch, and theyre about the only things the kids have to do). but are we in a position to ask for this? we're losing the battle on her behaviour at the moment because everywhere else she goes she does whatever she likes and noone enforces any rules. then when we tell her at home she has to follow rules she just looks at us like we're nuts and does exactly as she pleases anyway

1 step forward, 2 steps back! the early years woman showed up to observe K before 2 VERY important meetings... on a day when K doesn't attend nursery and so wasn't there to be observed. so the early years woman has attended both meetings having not seen k in 6 months!! nursery phoned today, K has been off the walls, she attacked 4 children, ripped a chunk of hair out of one girls head and has been screaming abuse at the others all day. shes hit, bit, punched, spat... to credit the nursery they called to tell us, but said they'd keep her the full day as they didn't want to reward the behaviour with an early home time. while this was going on we were in a meeting with the school we want her to go to. they informed us that since they were full they would refuse to take her because she has special needs and since there will be another child in her class with similar needs they dont think it is appropriate to take on K as they wouldn't be able to provide the support. the other child doesn't have a statement, isn't on any special measures at nursery, yet the woman constantly referred to him as 'severely autistic' and very clearly suggested that K did not have the same level of needs. when we said that it we would be persuing a statement for K because of her complex needs she announced that the other child might get one 'some years on' and needed more help than k so her priority was there (shes never met k OR this other child and only knew what we had told her that morning about ks behaviour). i rang the LEA to find out what other schools had places. thanks to Labour deciding the population was shrinking?! there are only 2 primary schools within 12 miles that have spaces, both of which are loud boistrous schools that would be completely inappropriate for K. its just so sad when you know that a child needs certain things and noone wants to listen to what you're saying. when we pulled up outside the school the first thing i said was 'she'll be straight over that wall and into the road' because the playground is only surrounded by a 4ft brick wall. we've got so used to her issues, and we're fighting endlessly to try and sort things out but everyone else seems to be working in the opposite direction!

i did a search but didn't find anything. your best bet is to actually go to a garden centre and ask them as they will have catalogues. otherwise you could try searching gardening catalogues yourself for the right species name.

UPDATE - K was seen again at child development and it was a total success. the first person we saw was the speech and language therapist who had previously suggested a mild delay in language due to not being talked to as a young child. but the story this time was totally different. shes now been assessed as having semantic language problems, word finding problems (can't access the right word so uses anything she comes across) and tracking problems in conversation which is why she talks utter nonsense. she talks round and round as a delaying tactic because she can't find the right word and then gets distracted by the nonsense coming out and forgets what it was she was trying to say in the first place. she also uses repeated phrases/words in place of correct speech to compensate for her problems. the old 'spikey profile' was trotted out and she commented that she felt the difficulties were a significant problem rather than just underdeveloped because they were in a very unusual grouping that isn't seen with underdeveloped speech. shes being referred to a speech therapist and will need 'significant support' at school to enable her to express herself, particularly with reference to the teacher taking extra time when asking K a question as it will take her far longer to be able to answer as she can't find the words and being supportive when she uses the wrong word but clearly knows the answer. when we got to seeing the pediatrician we explained our concerns about her behaviours etc and she agreed that there was likely a problem. she's being referred for a social communication assessment with a view to diagnosing (but didn't say what with) but explained that this might not be successful at this point because her case is complicated by her life experiences and previous upbringing. they're on the case with extra support for school and are going to contact the action plus woman and tell her she needs to review Ks case and factor in learning/communication/social difficulties as well as the emotional/behavioural ones theyre currently looking at. theyre also going to contact nursery and ask them to step up getting K to do things she doesn't want to. the nursery is child-led which has been great because it means less conflict, but K is neglecting certain essential skills because she wont do anything she isn't instantly good at and this needs to be worked on.

i think its about acceptable responses. if you've always got away with having a big screaming paddy/meltdown/whatever then thats what you're going to do. we point blank refuse to use the term meltdown for K... she has tantrums out of frustration just like every other 4 year old and with age will be expected to grow out of them, just like every other child. granted the frustration might come from a different place than an NT child (she will go absolutely nutso if the sun shines in her eyes) but its still just a strop because she's annoyed and doesn't know how to deal with it. i go the other way. i dont have meltdowns, i have shutdowns. i can't talk and can't move, just freeze on the spot while my brain catches up with the situation. this can take from a few seconds to hours. these have always been referred to as strops, and thats what they are in my mind. i'm annoyed at the way something has happened - more often than not its because of an unexpected change in routine that someone hasn't bothered to tell me about or if someone has misunderstood why i'm behaving in a certain way. - we went to a HUGE clothes store a few months ago, and my mother got very cross with me because when she told me to go back out the way we had come in while she paid i said i couldn't and she'd have to show me. she thought i was being petulant. i was actually so disorientated by the noise/crowds that i literally had no idea where on earth we'd come from and couldn't have found the way out if i was being chased by wolves. i'm fairly sure NTs get annoyed at these things too (being misunderstood, having plans changed unexpectedly), and since they dont scream and shout... why should i? i passed for NT for 23 years so why get all autistic now? i suppose the answer is to develop acceptable coping strategies for the frustration/whatever rather than coping strategies for the meltdown because otherwise your life is based on the fact that the meltdown is the key, rather than the coping with everyday stress and in that way the meltdown will always be the first response and a desperate attempt to fix it as a secondary response.

it is one of those awful conflicts when you care for a child as a job. we have to work with the social worker, and potentially will work with her again if another one of her cases is placed here so we have to not annoy her excessively... but sometimes thats not what we would be doing if the child weren't fostered. that said, a poor relationship with the social worker is even more harmful to the child (we have one social worker we wont take placements from at all because he is terrible and has openly admitted he has no interest in the job/children and is just waiting out his pension) she has another child development assessment this week, then psychological profiling which should be very interesting. no dx for anything but a general consensus that although we dont know what is wrong something certainly is and its spectrum-y. we're currently trying to get permission for me to submit a report to Ks review based on her educational/behavioural stuff to try and wake up the Early years person. my mom has the memory of a goldfish and no matter how many times i explain the SEN setup she cant remember it. i suspect since K was referred to action plus for emotional/behavioural issues they're failing to take into account that she has made no academic progress and her only social/behavioural progress is that she doesn't hit the other kids quite as often. she has, however, started spitting and kicking which will go down well at school. i dug out her action plus paperwork and there are no targets/goals that are actually measurable. it is purely 'the nursery need to spend more time doing this or that'. the only one that actually refers to something K should be doing is that apparently she needs to be forced to spend more time discussing her emotions. there is nothing that mentions actual progress that will be of any use to her (she can't/wont write her name, can't be moved from one activity to another without a tantrum, wont join in with group games/activities, wont eat her lunch, wont wear her uniform)

no phone call cue mom to the rescue at 7 this morning. she went into the shop and tracked down the person i was meant to be meeting, who said i should have been called back by the company on friday and told to go in for 6am. 15 minutes later i was there being talked through the job roles, i start full training tomorrow!!

two very good things happened yesterday the first and best... after 2 years looking i have finally got a job! i start my training on monday which somewhat terrifies me and i'm still half expecting to either not be called tomorrow (which they're meant to be doing to tell me when to go in) or they will, then when i show up say they dont want me after all. its the perfect job for me and it all seems a bit too good to be true right now. i'm also now starting to get nervous incase i can't cope. all my stress behaviours are becoming a problem (i'm watching Glee on a permanent loop, jump every time theres the slightest noise) the second thing is that i finally had an appointment with the west sussex autism unit. its been a year since the person i was seeing left and my support worker funding has run out so i was at a bit of a loose end. now i'm getting referred to social services and she's looking into supported lliving housing so i might actually get to be something resembling an adult at some point. plus she looked through my DLA renewal form, said that the tribunal had been grossly unfair and that my renewal case was good. she gave me some pointers of things to improve my case and explained the true impact of some of my difficulties that i hadn't realised and so wasn't explaining well. fingers crossed i get a good rate this time sorry for the 'me' post but i thought i'd post something positive for once!