Paula

My son needs the diagnosis he is on the spectrum and also has additional learning needs,fulltime jobs,independant liveing are just a dream that might not ever happen.He does ok but needs a lot of support.

Finaly got my son diagnosed after spending the first ten years of his life being told it was all in my head or the old favourite hes a boy,i gave up in the end.Then three years ago when my son was 19 i asked his gp how i went about trying againe to get him diagnosed as an adult a 2 year waite to see a physcologist ,its taken from june last year to this week though to get the final draft and diagnosis through.Hes on the spectrum ,weve known that all along.Why bother now i guess people wonder,well to ensure its easier to acess services if and when needed and to ensure theres no more argy bargy when it comes to benefits . No one can argue the toss with me and my son now.

My son has an obvious learning disability also so hey our lucks in we may get help.The psychologist has been out to observe him in his volunteer placement just waiting now for her to get back in touch with her draft of the report so we can check I'm in agreement ect.She was very nice and supportive I'm hopefully once we get the diagnosis some help will come. My son also behaves inappropriately towards woman and girls if he likes them.

Finally completed the questions yesterday she says he's very autistic and once we get the label she's going to help us look into getting some support re a social worker occupational therapy for him social funding and like I said to her me and his dad are just getting older we need to be within the next ten years looking into supported living for him it sounds morbid but no one lives forever and I want to see him happy and settled before I check on out, is it awfull to not want to spend ones whole life caring for someone I feel bad but like she said it's better to plan these things take time implementing them rather than waite for a crisis situation.

I've suffered myself with depression for years and was diagnosed with bi polar at 30 even playing that card didn't get my son acess to services you push and push and kick of but you get worn down and exhausted by always having to fight a system staffed by people who on the whole know nothing about anything and work of a check sheet I just hope when we get the diagnosis finally they'll listen.Its a miracle me and my husband are still together the stress over the years guess we're made of tough northern gritt.

I was just his mum doing what any mum would do and no he never goes into respite I was told by the council there was nothing wrong with him even though they'd never seen him even though he went to a special school and claimed dla and esa I didn't qualify for support,he won't go to grandparents and a few years ago social services sent a social worker to assess situation and said get on with it services are stretched .You couldn't make it up but I bet I'm not alone in this situation.

He returned home as if nothing happens … I went to the physcology appointment we haven't even got through the form yet and she says he's very very autistic. … tell me something I haven't known for 21 years least she's nice and friendly and approachable ended up telling her things I'd not ever told anyone ever it was hard putting it into words out there for someone to hear but she didn't blink an eye she just couldn't believe I'd managed with him for so long without help or a diagnosis … she said I'd done a good job

My son is 21 I've been posting on here for a long time since he was 11 life doesn't get any easier.He went into a rage last night over nothing stomped to his bedroom locked the door and stayed in there all night occasionally shouting abuse if he heard me or his dad on the landing.We've the second phenology appointment today but he's got up stormed out the house ranting and shouting.She said he didn't need to attend so that's not an issue.He's left the house scruffy,stinking,unshaven unwashed for a week.I'm left in tears at his utter unreasonable behaviour and outbursts. I think thankgod he's gone he shouted he was of into town,I'm thinking god he looks a mess and stinks,I'm thinking I hope hedoesnt come back,I hatemyself for thinking that I love him but I'm worn down after 21 years.I'm sick of dealing with a grown man a largegrown man over 6ft and 16 stone who treats me like . I want to run away far away I want my life back. So fed up and sad.

Don't need post diagnostic support we've always known our son is on the spectrum but we've never pushed for a diagnosis but as hes getting older I'm fed up and so he of not having the label.Next appointment on the first september to continue ploughing through the questionnaire.

Finaly after been on a waiting list for almost 3 years we had the first appointment with clinical physiologist yesterday. Went well finaly were going to get the diagnosis for my 21 year old son.

why is youre daughter haveing to sign on. i ask because my son 21 claimes esa and isnt required to sign on for job seekers allowance.All i did was phone up the benefit people ie the job centre and explaine my son had a learning disability and was aspie and i was his mum and what did we do and they said hed to claime esa.He doesnt have the pressure of singing on and haveing to justify hes looking for work all the pressure is of him.

I had a little tiny tear in my eye as me and my son went to vote today him for the first time down at the school where 16 years ago they said why bother sending him to a special school it will do no good he will never learn to read or write or do much........... Well today my 21 yr old son went back to that school to vote and guess what it was worth the bother sending him to a special school because he can read,write, he travals independantley hes a disabled sports ambassador and volunteers in a sports centre twice a week and is working towards gaineing a supported paide job................so stick that in youre "we know whats best for youre son " hat. Weve come a long way from the first time i posted on here worrying over his bowels and what the future might hold. Never give up hope and remember the steps are small and you often dont notice any progress but there makeing it.

My son isnt lieing round playing on xbox all the time. he is currentley doing the second part of a community sports leader course for disabled young adults something he wanted to do something we found out about together rather than me just saying this is what youre going to do no matter what.Hes actually building up his cv because theres an opportunity for paide work for 6 months two days a week as part of the disabled sports federation where they employ a young person with a disability for 6 months with the hope of them keeping them on permanatley,he actualy was put forward for this scheme at the end of last year but sadley didnt have the sports leader qualification he needed so were working towards that and hes been told next time hell have a better chance.Hes aslo a ambassador for the disabled sports federation and goes to schools supporting other younger pupils with disabilities get into sports.Hes busy and active and the plus point is hes doing things hes chosen to do. I guess ive come across like some sort of parent who sits at home drinking white lightening whilst kids run riot because i cant be bothered but that is way of the mark...........the point i was trying to make but obviousley bodged was at 16 regardless of the aspergers they have the right to make there own decisions,they know what they like and dont and yes as parents we can gentley encourage and point out that something else might be more beneficioul and hope they listen but forceing someone in my opionion isnt the way. I also think this young lad probley fancy now hes had a whirl at work experiance getting into work instead of college so it would be worth checking out the Princes Trust website and the schemes they do for all abilities they worked wonders for my son in broadening his horizons and makeing him realise for himself that being home all the time isnt the best option for a happy life.

Im comeing at this from a different perspective My son is now 21 and hes been at home with me since he left his special school at 16.I wanted him to attend college and things a supported place with transport to and from but he refused ,yes i could have forced him to go but i thought he has to have some say some controll over his life i cant controll everything he may be asperger but he knows his own mind.It didnt matter what i said how i tried he refused and that was that.I worried about what would happen .I wont lie its been hard but hes doing ok,we were forced to look at other opportunities and schemes,he took part in the princes trust team,hes done alsorts of sports based projects and courses not attached to colleges .Hes happy coz he feels in controll doing what he wants to do. Youre saying you fought so hard to get him into special school and where as it gotten you....but isnt it about where its gotten youre son.it looks like its gotten him to a point where hes decided college isnt for him anymore .he sounds like a "normal" 16 year old lad stuck on his game machene who cant be bothered with stuff my sisters daughters nt boyfreind is 17 and he doesnt get outta bed till turned 12 and does nothing but xbox one and eat ...........Maybe youre just expecting too much. I say leave him to it ,let him make some of his own decisions and you may not like them but hes the right to make ones that you dont...........i also am of the thinking life is a 70 plus years journey so does it matter if we have a few glitches along the way realy. Ive learnt over the years with my son just to go with the flow and sod it.

My son is now 21 but he had horrendous bowel issues as a child and teenager.His stomach was that swollen and yet they insisted he wasnt constipated.He would go weeks without a bowel movement then hed produce a small tot sorry to be graphic but his poo would stink to high heaven,it was also the consisyancy of toothpaste and very sticky he had constand anal leakage.We were given movicol ,pecessarys alsorts of stuff.In the end id to look at his diet and cut out all the processed foods it wasnt easy but it helped a bit.he had stool tests and we were told that some sort of bug that lives in the bowel had got out of controll and that this was causeing his issues so he was given anti biotics specific for the bug.It went on for years then as suddenly as it all began it just stopped.he now has normal mvements no issues at all.Its just one big mystery why wed years of problems. You say youre son is 13 my son is a lot older than youres but his behaviour which had been settled to a certaine degree kicked off round puberty ,wed more tantrums and agro as he hit his teens than we ever had as a toddler.he grew out of that also as he matured. I hope ive helped if only in showing someones been through something similar.

Im my sons appointee also.he made his first claime for esa as soon as he hit 18 has he wasnt in education or work.Dont be put of by the form a lot of it isnt relevent.I filled it in and initially he was awarded something like 50 odd pounds a week whilst they looked into his claime.Then we had to get a "sick note" from his gp which was realy easy because she knows him as done since birth it just confirmed he had a learning disability and was aspie.Then we were called in for an assesment ,we didnt actually have to waite too long in our area west yorkshire for this to happen.Againe there was nothing to worry over,i went along with him and we were in the room with a lovely lady for around 10 minutes where she asked a few questions and basically confirmed my son was genuine............it was obvious as soon as she started talking to him.Soon after that he was awarded an increased amount of weekly money and had to attend the job centre to see a disability work advisor once every 6 months or so.To be blunt this was a compleate waste of time has there was no work for him and no schemes to help him get into work but like the lady said at the job centre they have to show willing.We havent been called back in almost 12 months.He gets his money once a fortnight and weve had no more assesments or forms nothing. I hoped that once he was claimeing esa that theyd be help and support in finding him work or training or supported work but the reality of the situation for us in our area is theres nothing its all just lip services saying what should happen but in reality theres not enough support or money to provide the proper support and you just slip into the background forgotten about. least with esa he doesnt have to go sign on every two weeks,so the pressures of but at the same time it feels like hes been condemed to a life out of work on benefits. i dont bang on over his lack of a job to him because i dont see the point ,its hard enough for normal young folks to get work and i dont want to make him feel like a fialure because hes not.We just make the most of it and try not to let it get us down.

Im glad im not alone in this but wish i was if that makes sence. Yes when there small adulthood and 21 seems a million miles away and you think things will be different and itll all just fall into place or that adult services will suddenly kick in........then you realise that adult services are thin if not none existant on the ground especialy where i live,services are been cut left right and centre.His weekly social group is on the verge of being cancelled due to lack of funding and not being deemed imortant ,but for us and my son is a lifeline i as well as him look forward to that one day a week when we get to do something that doesnt involve being with each other.Its bliss even our dog seems to sigh a big thankgod when hes hotfooted it away for the day................ Im not ashamed to admit ive spent a good many years struggling with depression on and of,im not blameing my son for this but its not helped.Im also getting to that age in my late forties where me hormones are allover the shop and im haveing my own problems so dealing with him at times is getting harder and im just so bloomeing tired of it all. Im well past the stage of why us why him,spent too many years thinking that and it gets you no where but i still wish miricles happend because id remove the autism tommorrow and have him "normal" so that his life could be easier and more rounded. I have changed some of my ways,i used to bang on and on at him to shave his face because he looked a right scruffy mess but now i think sod you youre 21 a grown man and if you dont want to shave im not going to stress myself out over it,the same with his lack of bathing i just think forget it it just makies my stress levels go up and up trying to force him to do something he refuses to do unless he actually wants to do it. It sounds like its all bad...........its not. He has his good points,hes not into fashion so doesnt want all the latest expensive gear,saves us a fortune,he doesnt use much water because he isnt in a shower everyday,he doesnt demand things material things like most young people do and despite the myths surrounding aspies he does have a sence of humour and can make me laugh at times and when i look across at him i feel a rush of pried and love at the fact hes my son and i can see the innocent child that lives in this adult mans body. Maybe 2015 will be a turning point,i hope so.

thanks for youre reply to be honest i just wanted to get things of my chest in a place where folks "get it" so the fact that you cant offer any difinitive advice doesnt matter just knowing someone knows what you mean helps a lot.Sometimes you feel so isolated.What gets to me is when peole say things like............oh isnt he comeing on isnt he a grand lad..............and i think yes he looks "normal" he can seem the model citezen in the outside world but behind closed doors dont you dare rattle his cage unless youre prepared for an aspie rant.......... Yes he is verbal,he can read and wright,he can tell the time,he knows the money system he has a bus pass and travles to his local town which he knows well independantley.he attends a social group once a week and takes part in a disability sports thing also.At the beginning of the year he was involved in a supported volunteering project and helped out in a food bank with support,alas the support only lasted a month and after that was withdrawn it fell apart,he couldnt stay on task,arrived too ealry basically got on everyones nerves. I guess hes stuck in a rut,hed like to work but the reality is hes found it hard if not impossible to get work and even volunteering goes wrong and he cant cope........I dont work,id like to have a small job but ive lost me confidence due to being a stay home mother all my now adult childrens life. I guess it could be worse. Thanks for listening.

Hi Its been a long time since i last posted on here and i cant beleive my son is 21,i think i started posting way back when he was around 10 and hed got bowel issues....it seems such a long time ago now. Anyway hes 21 so hes all grown up.he still lives at home with me and his dad ,his sister actually got married last year in may so its just us threee now in the home.In some ways its better because his sister like all sisters knew exactley how to push his aspie buttons and wind him up. He left school at 16 and did a few courses and took part in numerous schemes,Hes unemployed and claimes benefits.Thats the rough background. I just wondered how otheres especialy mums who maybe like me have been the maine carer since birth start to step away and leave them to it instead of always feeling you have to help or sort things out.Dont get me wrong i dont meen leave them to rot of course i oversee things make sure hes safe ok not in any danger ect its other things.My son is over 6ft tall and weighs 14 stone hes a big man im a 9 stone woman who he towers above.He can be ver abusive and unkind he shouts a lot when things dont go his way he rants and raves and makes no sence.Just this weekend i was in tears after one of his outburst i just walked out of the house to get away from him with my husband and dog.I was so upset.I thought ive done everything for you over the years made all the sacrafices to make youre life as good as it can be and for what to be verbally abused and treat like sh~~~t . I ended up looking at myself takeing a close look,do i make excuses for him all the time always saying well hes got aspergers blar blar he cant help it he doesnt know what hes doing,Thing is maybe he does maybe he can be just a nasty piece of work who doesnt give a monkeys.He isnt capable of liveing alone ,he can warm food in a microwave ,make cups of tea ect but he wouldnt be able to run his own home.Hes also bone idle and lazy,most days he refuses to get dressed,hes an aversion to bathing and as for teeth brushing he thinks thats not something he needs to ever bother about.I just get so fed up at trying to motivate him to shift his backside,to get dressed to do something other than sit on his backside.Hes not grossley overweight as he is a tall lad,but he does carry too much weight round his stomach and needs to loose around half a stone to sort his belly out but he wont listen to me and when he does leave the home he buys rubbish in the form of crisps and pop and eats the lot in one hit. Im no longer dealing with a child,hes a full grown man who has the right i guess to do what the heck he wants.But somethings got to change.Hes in utter denial over aspects of his behaviour,his weight,his food intake,his lack of hygene.Should i be cruel to be kind and get tough with him,not easy when hes my son or leave him to it. Anyone whos dealing with an awqward adult aspie any experiances ,advice on anything as to how you made the transistion from delaing with a child to an adult would be welcome.daft thing is it was easy with my daughter as she grew up and got married .Im just stuck in the mum ,child carry on with my son maybe due to the fact ive been a carer for so so long. Sorry for long rambling post. Paula

We have a dog and my son is a lot older 19 so he handled a dog comeing into the house ok plus our dog was 7 months old when he arrived as he was a rescue dog. I have a freind though with a autistic son who was in the same postition youre in with a 9 week old puppy in the house.her son loved the puppy but foound the fact that he couldnt control or predict what the dog did unsettleing.It took a good while for the young lad to come round but as the dog got older things improved.So im sure things eventualy will work out in youre house too.

Yes hes calm now Hes not in work He attends one day a week a social group run by an outreach team for young adults with learning disabilities and he also goes to a sports group every saturday for a few hours againe for young people with disabilities. He doesnt see anyone from mental health. He wont aknowledge any of his behaviour hes in denial. I tried to talk to him but he just shuts down and refuses to have conversations about it. I just feel powerless. I guess we just plod on till next time. He can go weeks and be kind of ok ........ as long as nothing disrupts his routine cast in stone.Then the slightest thing and that can be anything can trigger him.

Ive been posting on this website since my son was around 11 years old hes now 19 although i havent posted for a while. My son has been at home with me as the maine carer since he left school 3 years ago.His 21 year old sister no longer lives at home his dad my husband lives with us but has to work i work 3 hours a week. To cut to the chase ................ last night my son went crazy over basically nothing.He was simpley asked my his dad not touch his things to leave them alone.This was enough to set our son of into a rage.Hes a big lad over six foot and weighs 15 stone hes bigger than me and his dad were kinda powerless againest him physically.He went crazy shouting fing and blinding he attacked his dad and punched him his dad had to try to restraine him and told him to go upstaires and calm down.He went upstaires shouting swearing saying he fing hated us and was leaving and never comeing back.I was in tears and said theres no where for you to go just calm down and think..............he told me if i didnt move hed hurt me he then grabbed my wrists and threw me out of the way .I just had to let him go. I phoned his sister who no longer lives at home and said what had happend and maybe he was heading her way id give it one hour and if he hadnt shown id have to call the police . He did show up ranting raveing and slept on her couch overnight. I phoned emergency social services explained what had happend............they talked all the talk about how i needed help.............this morning someone called me took detailes and basically said he doesnt meet the criteria for any sort of help...........i cant get respite,i cant even get help or support getting himto sheltered accomodation nothing.I just cant beleive it. I said well what the hell am i supposed to do. Saturday my husband was working and our son went into a rage in the street because hed tripped over he ran home and locked me out of the house and bolted all the windows.Id no key and no phone.Id to call the police to come and break the door down.I was in a right state. The so called adult disability team or whatever they are have said if he doesnt return home today then they suggest i report him as a missing person to the police. His sister says he was calmer this morning but in compleate denial over what had happend saying nothing had happend. I feel so utterly helpless.Ive a 19 year old grown man with the mindset of an infant and the strenth of a all in wrestler.You cant reason with him,he totally dominates through intimidation and tantrums. If you confront him on anything he kicks of to put it midley. What do i do where do i turn it seems no one gives a toss. Its just me me husband and daughter my parents never have been supported me sister doesnt get involved. Life is hell. Im on that many tablets for depression and anxiety. Thanks for listening.

My son will be 19 in January one thing ive learnt over the years is to not give one hoot about what other people may or may not be thinking and dont bother about what anyone says just do what you know is best what works for you and youre family and youre son and forget everyone else.It took me a good few years to get to that stage but when i did i no longer fealt the need to constantley explaine my sons behaviour or what i was doing and why and the stress id always fealt at being out in public and fear of being judged just dissapeared. Youre the one in the situation day in day out not them theyve no right to tell you how to deal with youre son.

Id lilke to defend Costa as not all branches are the same.My son goes into costa regulary and the staff are fantastic with him everyone knows him and they all know his order because he never changes it they all make a point of saying hello to him and make him feel important and welcome.Granted my son is older 18 but i have been where you are when he was younger with interfearing members of the public passing comments on things they knew nothing about. I used to have some of them cards that id just give them and say read that.Id be lieying if it didnt get to me especialy when i was first takeing my son out and about in the early days id be that worried and stressed not by my sons behaviour but by what i thought others were thinking i hated people stareing at us and often would just go home.But you learn to think s*d you you develop a tough skin. My advice is dont be pushed by what you think others are thinking into dealing with youre son any differently to how youd deal with him at home just because youre in public view its a mistake i used to make.If he kicked of at home id know that the best way to deal with my son was to ignore him and let it blow over and it would do, but if i was out and about id feel under preassure to stop the behaviour quickly so id try to talk him round or stop him or get hold of him and it would make it a whole lot worse.Once i started thinking i dont care who stares or what they think things got a lot better. It does get easier in time my son hated leaving the house when he was younger hated crowds hated eating in public now he can walks into costa order a drink and pay something we never ever thought hed do.

Ive found this very informative.My son is now 18 and hes changed a heck of a lot since he was younger and can do things we never thought hed be able to do.........he can travel independantley all be it to a familiar place,he goes into shops and buys things on his own he even goes into cafes and orders what he wants and pays and has conversations with the person serving him once hes got to know them he can use a mobile phone and tex msge me and he goes on overnight stays with his youth group.To many this sounds like a "so what big deal" but less than 4 years ago he did none of these things.Also his outbursts and tantrums have all but dissapeared hes learnt to be a little bit more reasonable and its made all the difference.Hes still a creature of routines and likes things samey but if hes exposed to new stuff and new places slowley then it helps to enrich his life a bit more because the world is something then thats not quiete as scarey for him.I push him but very gentley and in a direction hes happy to go in....