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Sa Skimrande

18 and up, what happens then ?

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And so I hear about all these wonderful services set up for the children diagnosed with ASD, where they can do activities separate from the general population to suit their needs, which is, wonderful but given the premise that joining in activities with normal children or indeed children of all abilities is part of the necessary training for life what happens to these children when they become adults as they undoubtedly will when they reach the age of eighteen, will there be special services available for them then, or will they be expected to basically just get on with it along with all the other adults ?

 

Now as we are all aware things are not getting better in terms of funding in this country and it might even be what exists now will become subject to cost cutting exercises, leading to special services drying up. What then with services you once depended on not being there anymore or you suddenly find your child is excluded through being better abled, what then what is there, bearing in mind everything you depended on has gone or is at least hard to get ?

 

Is this separate activities the right course of action or should children be with everyone else learning to exist in a society they will become part of and be expected to function well enough to work for a living and maybe even find a partner, get married and have their own children ?

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Seems like once transferred over from child/teen -adult services you seem to go "un-noticed" ,invisible and missing from their radar you can get caught between the middle gap which can be SO frustrating as seem 'forgotten' and seem like endlessly comes down every time to "nothing" and seems child support services are more clued up and available than adult support services! Which angers me greatly!

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You do your best. You get moral support from sites like this. There isn't one approach that will work for everyone but instead of focussing on what isn't there, focus on what is available.

 

The government aren't doing a very good job in keeping support where it is needed but we can support each other.

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You do your best. You get moral support from sites like this. There isn't one approach that will work for everyone but instead of focussing on what isn't there, focus on what is available.

 

The government aren't doing a very good job in keeping support where it is needed but we can support each other.

 

That is all the late diagnosed have had to do to get to where they are in life; do their best as there was no other option and so the understanding should be noted that it can be done without special services laid on.

 

But where there are special services laid on for the young and young diagnosed, how well will they cope when the support they had has suddenly gone, which they will experience when they reach the age of eighteen or maybe sooner ?

 

And so, could it be said the young diagnosed and supported now, are at a disadvantage in terms of adulthood ?

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I can't comment on that, I'm not a parent nor am I likely to be. It's something each parent will have to sort out when it happens. Not perfect or ideal but without having gone through that process, I can't comment further.

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I can't comment on that, I'm not a parent nor am I likely to be. It's something each parent will have to sort out when it happens. Not perfect or ideal but without having gone through that process, I can't comment further.

 

And this is where I am rather hoping the parents of will chime in with their thoughts and feelings on the matter, as I for one would like to be educated.

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The simple fact is that there are not enough services or provision of any kind for adults with ASD. It is also a fallacy that there is a huge amount of services out there for children with ASD too but it is fair to say that children do get the biggest part of the pie.

 

I have had to fight for all the support I've received as a parent of a child with ASD but I am in the fortunate position of understanding many of my child's problems. Many parents with children who have an ASD are left to fend for themselves after their child's diagnosis, left with many questinons and often no-one to answer those questions. These days, there is so much contractictory advice out there on the internet and because often professionals will leave parents to make their own decisions about what is best for their children and even suggest they learn NOTHING about ASD, parents will grasp onto all sorts of information to answer the 'Why's' about behaviour or difficulties. I am part of this world and I am in contact with these parents. Often, I am in disagreement with other parents because I do things differently due to how I think and the fact that I do not always believe what professionals say and I do my own research.

 

As an adult, I found no support and in fact there are professionals who believe I have ASD and those who don't. This is because I've learned so many ways to cope and have over the years sought therapy in an attempt to conquer my chronic mental health difficulties. It got so hard that at one point I almost ended up in the local psychiatric hospital when my second child was only 6 months old. I set up a support group because of this dearth of support but it got too much for me to facilitate stress-wise - thankfully one of the group members now runs it and is doing a great job. Apart from a family group for parents of adults with AS there is nothing else for adults in the whole north east of Scotland. It is pitiful but we can't spend our time wallowing around saying 'Not fair, not fair'. it isn't fair but it's up to us to advocate for ourselves if we can and be at the forefront of helping people understand exactly what ASD is like in adults and the support we actually need.

 

It can be hard to be an adult with ASD and be a parent of a child with ASD. Perhaps not for the same reasons as it is hard to be an NT parent of an ASD child. In many ways I consider my child 'normal' because it's my 'normality' although he has many problems. Those can be dealt with if I take the time to understand them and I always consider practical problems to have practical solutions. So, I find it hard to hear the views expressed by some other parents who do not view those traits in the same way and who may not understand why I push my child the way I do etc or think my child does not in fact have ASD to the same degree as other children simply because his anxieties are kept in check and he is disciplined, corrected and taught daily with concessions made for sensory problems, fears and rigid behaviour but not for poor behaviour. However, again I feel it is up to me to try to educate and understand as well as give my own child the opportunties to learn and grow in a way that gives him at least a chance of not succumbing to the mental health difficulties that I have.

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I guess supporting children with an ASD by taking them out of difficult situations can have a negative impact on them when all of a sudden the big wide world is a real place where they have to function - whereas if they'd not had the support they would have either - always been used to having to deal with difficult situations and so it wouldn't be a shock; or they could have learnt how to cope and overcome certain things so they can begin to function a little more 'normally' (hate that word - but you get my drift).

 

I wasn't diagnosed as a child so I had no support - I had a friend once who was diagnosed as a child and they had all the support under the sun, but they weren't coping as an adult and I think it's because to an extent, they'd been 'wrapped in bubble wrap'.

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I think it can make so "jealous" over what could of been... What could have had support service wise but doing this "eats you up" from inside your head due to replaying past events especially education!

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I don't think anyone can really know until they are a parent. It's interesting to hear different perspectives on it however.

 

I disagree - surely it's best to understand this from the perspective of the person with the ASD? A parent can't truly know how that person is feeling or how something has made them feel. The best way would be a conversation between a person with an ASD who didn't have support as a child and a person with an ASD who did.

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The perspective of the person with ASD is definitely valid Willow. I didn't say that. I'd be a self-hating ASD person if I did. My mum has Aspergers. Lyndalou has Aspergers and she is a parent. Are their perspectives invalid because they are parents?

 

It's the parent that has to navigate the system for the child, because simply put - a child, especially a child with a disability is ill equipped to deal with the nuances, and frustrations of dealing with an inept system. What I do think would be useful is a workshop for children approaching 18, showing them how to apply for support themselves, how to handle phone calls, how to get an advocate when it simply isn't possible to advocate for themselves. Proper life skills that they will need. All of this is dependent on how pronounced their ASD is. Most people with ASD on here, yourself and myself included are lucky that we can be as verbal and as communicative as we are.

 

What about children who are non-verbal or have mobility issues, or are non-engaging? How can they put their point across? It's usually their parent that does that for them. Just because goverment support stops - it doesn't mean their parent stops being their parent.

 

What also needs to happen are ASD awareness courses in goverment departments that deal with the public so that misunderstandings due to communication issues are dealt with more tolerance, that plain language is used, right down to the colour of paper that letters are printed on.

 

The unfortunate reality is that the goverment are taking away so much from people who desparately need it. People are having to become more and more self reliant - in some cases that can be the making of someone, but for a desparate parent who needs that extra help with their child who they love very much and want to help them but can't because they were depending on a local service that has been taken away - it may prove the undoing of them.

 

No ones views are being discounted - there is the need for better communication between all parts of the spectrum. Parents and children alike.

 

The fact is that right now, to live in the UK, with the services we have - it's crud. Things need to change. But only if we all work together. It's a big world out there and there is room for all of us.

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I agree that a parent has to guide a child, obviously - but I think the parent needs to take a look at people with an ASD that has had support as a child and one that hasn't; some people will need support and will always need it, but others are given it when really, they could have managed without it - meaning that when they get to 18 and there's no support, they're not prepared. In the current system where support disappears after 18, I think parents need to think really carefully about the support they push for, for their child - and whether or not that is in fact going to have a negative impact in the long term, due to lack of adult support.

 

Sometimes, you cannot tell in the early years of a child's life how difficult things are going to be - but putting them straight into a special school because they have a diagnosis of ASD and keeping them in special school's until they graduate isn't necessarily the right thing to do. If you keep them in a mainstream school they might cope just fine and learn important skills and coping mechanisms which will ultimately make them a stronger, more prepared adult. My brother got a diagnosis of Autism very early on - he was barely speaking and he had a lot of anger issues - but my Mum put him in a mainstream school from the start; he struggled on and off but the process on the whole has made him so much more than I think he would have been had we sent him to a special school when we got the diagnosis. He's now in a mainstream high school and he's doing fine - he still has friends which he made in lower school, who have an understanding of his behaviour.

 

On the flip side - my friend who had a diagnosis early on (who was very, very similar to my brother, pre-school) was sent to special schools and given all the support under the sun, and now as an adult he doesn't function without support from his Mum. I can't help but feel sad thinking that it could have been so much different for him had they just waited to see how he might have coped without so much support.

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Willow, there isn't a cookie cutter solution to care.

 

There never will be, because it's a spectrum. Everyone falls somewhere different within it.

 

Some people might not need support, some do. You're right.

 

Your brother was extremely lucky in his support system, and his experiences in school. That's great for him. It's also unfortunate that your friend is so dependent on his Mum.

 

But not everyone can be that lucky to not get bullied, or taken advantage of, or struggle in classes because they can't advocate for themselves. Each person is different in what they can handle. Your brother can handle himself fine, my nephew can't - and he's in a mainstream school.

 

I did actually say that the system is flawed. I did say there needed to be change. I also made suggestions on how that could be remedied.

 

To suggest that people should not rely on support is a dangerous line of thinking. Sometimes that's the only avenue available to someone, it doesn't make them less of a person or parent to use it - and it's slightly insulting to those who do to suggest they are making mistakes trying to help their children.

 

Ideally - it's all about finding the right balance between support and independence.

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To suggest that people should not rely on support is a dangerous line of thinking. Sometimes that's the only avenue available to someone, it doesn't make them less of a person or parent to use it

some people will need support and will always need it

 

But not everyone can be that lucky to not get bullied, or taken advantage of, or struggle in classes because they can't advocate for themselves. Each person is different in what they can handle. Your brother can handle himself fine, my nephew can't - and he's in a mainstream school.

 

I understand this - I was in mainstream school and I got bullied out of it - twice, from two separate schools. At which point I received some level of support, but the whole experience has made me stronger - at the time it sure as hell didn't feel like it could ever be a positive thing though.

 

I never said it's a mistake for a parent to help their child - I just think it's a mistake to rush into getting all levels of support, before trying mainstream. And yes, with some children it will be blatantly obvious that they will need support, and of course, that is the right thing to do - but as I said, some people will always need support.

 

I didn't comment here for an argument and I don't think you're seeing my point of view because you're saying it back to me in a way I didn't intend/saying the opposite of what I said. (see quotes at the beginning of post). I just think that sometimes parents need to hang fire for a while and let their child grow a little first without extra support. Aspergers is about learning new ways to cope - but if there is nothing to overcome, it will never become more manageable - therefore hitting 18 and suddenly being expected to work etc will just be too much of a shock. You'll still be a child - in an adult world. You need to challenge the aspects of it which you struggle with.

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Willow - I'm not arguing - just putting my point of view across the same as yourself. If you are taking it that way then I sincerely apologise.

 

I didn't say I wasn't seeing your point of view either, you're assuming I'm not, because I'm not entirely agreeing with you. I respect your opinion, just as I hope you respect mine.

 

What's funny is we are actually saying a lot of the same things, actually agreeing with each other - just in different ways.

 

Being Autistic, or having Aspergers means different things to different people. When people ask me what Aspergers is - I always begin with 'What Aspergers means for me is...' because it's a truly unique condition that affects each person differently. Some people will have an easy time of it, some won't. Some will get lazy and blame negative behaviours on their condition, some will challenge those behaviours and evolve like you have, like I have.

 

We can both discuss, as we have been doing, what should happen to best encourage children to become more self sufficient and learn coping mechanisms for their disabilities. However you at your age, and me at my age are at a point where we can really only discuss it to a point as it's purely academical without having the experience of having a child and trying to support them.

 

Can I ask what your experiences are of trying to get support as you are over 18? I am interested as I am currently trying to get some support myself!

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Can I ask what your experiences are of trying to get support as you are over 18? I am interested as I am currently trying to get some support myself!

 

As far as I can see there isn't anything major. I did have a lady from some kind of 'Adult Aspergers Team' who used to help me with filling out forms and was helping me with DLA but their funding got cut. I guess it depends what support you need. I never really know until someone says they could help with X, Y or Z and I think...'hmm I guess I do struggle with X..'. I don't currently get any help and my DLA was cut a few times but it's back at the low rate (not that I expect that to last!).

 

A couple of years ago I was seeing an advisor for people with disabilities at the Job Centre - who was aiming to help me become more confident with interviews and what not. But I stopped that because my fiancé got a job and we decided it was best for me to work from home.

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To go back to the original post by Skimrande.........what sort of services and support are you referring to ?Educational?......social worker ?.........social groups ?

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As far as I can see there isn't anything major. I did have a lady from some kind of 'Adult Aspergers Team' who used to help me with filling out forms and was helping me with DLA but their funding got cut. I guess it depends what support you need. I never really know until someone says they could help with X, Y or Z and I think...'hmm I guess I do struggle with X..'. I don't currently get any help and my DLA was cut a few times but it's back at the low rate (not that I expect that to last!).

 

A couple of years ago I was seeing an advisor for people with disabilities at the Job Centre - who was aiming to help me become more confident with interviews and what not. But I stopped that because my fiancé got a job and we decided it was best for me to work from home.

I have never received the support you are describing here - I've had to do all of it on my own. It has made me a much stronger person than perhaps I would have been had I asked for and received help with all the things I've ever struggled with but it's come at a huge price.

 

This is the kind of help that I believe in time would benefit my child with his transition into adulthood. However, he is only in the formative years of his life and I believe that my role as a parent is primarily to help him learn the key self care and communicative skills he needs as a foundation for all the other more complex skills he will need to develop as an older child and then teenager. This means building on the strengths he has now to provide focus and help him develop confidence while stretching him in the areas that confuse and upset him and he has little or no natural understanding in.

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There are adult autism services local to me, though as I'm not yet diagnosed I can't access them all. In my area, Autism West Midlands seem quite good as I started a work choice programme for Aspies through them, and they provide other services including floating support and supported housing. I think NAS offer services but I can't remember off-hand, but they defo have a directory of services and the helpline can be useful.

 

I grew up and managed to work for many years despite every day being difficult, I just learned the hard way without any support because I didn't know I might have something like Aspergers. I think its important for autistic people to venture out and find their limits. Learning to coping with change and developing strategies to live the best life you can is vital. If I had been diagnosed as a child/teenager, I may of felt I was too different/awkward to reach the heights I did - and wouldn't of learnt what I was/wasn't capable of. I've learnt I'm great with computers, but difficult with people - and need to find a job, or self-employment, that doesn't overwhelm me. I've grown to like challenges, and develop myself - its hard work because I have to make a concious effort to do things most people do without thinking, but I'm getting somewhere so I feel progress is being made. I'm half-way to an IT degree with the Open University, which is tough but its something positive and rewarding to focus on.

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That is all the late diagnosed have had to do to get to where they are in life; do their best as there was no other option and so the understanding should be noted that it can be done without special services laid on.

 

But where there are special services laid on for the young and young diagnosed, how well will they cope when the support they had has suddenly gone, which they will experience when they reach the age of eighteen or maybe sooner ?

 

And so, could it be said the young diagnosed and supported now, are at a disadvantage in terms of adulthood ?

 

I think there is a lot in what you say, Sa Skimrande, I'm just not sure what the solution is. My lad had a lot of 'support' at school and still has some now at college, I'm not sure how he could have managed without it, tbh. The downside is that he is now totally dependent upon adults and other people to sort things out for him and organise him and even do his thinking and decision-making for him. He hasn't developed independence skills because he's gotton so used to having an adult by his side non-stop.

 

As I say, I'm not sure what the alternative could have been really but I know it has stunted his development to some extent. We're helping him to increase his independence, but at 19 he is way, way behind where he should be. And you're right, he is 19 now, and there will be no more 'support' when he leaves college in June, it will be him and us, that's it. He has no friends, has had no help developing his social skills and so I can envisage a long period of the future where he'll simply sit in his room 24/7 with nowhere to go and no-one to see and no help. He used to have access to holiday activities for AS youngsters but they stopped at 18. He does at the moment attend an AS social group once a week, but even that will end at 21, he'll be 21 next year!, and so what will he have then, nothing! One day when we are gone he will be totally alone and it is terrifying.

 

~ Mel ~

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I think there is a lot in what you say, Sa Skimrande, I'm just not sure what the solution is. My lad had a lot of 'support' at school and still has some now at college, I'm not sure how he could have managed without it, tbh. The downside is that he is now totally dependent upon adults and other people to sort things out for him and organise him and even do his thinking and decision-making for him. He hasn't developed independence skills because he's gotton so used to having an adult by his side non-stop.

 

As I say, I'm not sure what the alternative could have been really but I know it has stunted his development to some extent. We're helping him to increase his independence, but at 19 he is way, way behind where he should be. And you're right, he is 19 now, and there will be no more 'support' when he leaves college in June, it will be him and us, that's it. He has no friends, has had no help developing his social skills and so I can envisage a long period of the future where he'll simply sit in his room 24/7 with nowhere to go and no-one to see and no help. He used to have access to holiday activities for AS youngsters but they stopped at 18. He does at the moment attend an AS social group once a week, but even that will end at 21, he'll be 21 next year!, and so what will he have then, nothing! One day when we are gone he will be totally alone and it is terrifying.

 

~ Mel ~

 

I thank you Mel for understanding what I was asking and taking the trouble to respond from your own observations of your own child for you know what was is, is going to cease to be where your child will enter the adult world and be very much on his own ill prepared because sheltered through support he has been ill prepared and this is the root of my question and my assertion that the young diagnosed and supported are in fact disadvantaged compared to the late diagnosed. And of the late diagnosed many of us suffer unsupported and that is why people like me come here to warn the parents of what could be coming their way.

 

The solution is education, awareness and support of those older and indeed late diagnosed for support now gets perspectives changed and services put in place now will be there for the young when they hit adulthood as to ignore adult and late diagnosed experience and daily struggles in the real world that is adulthood one is in effect ignoring what their child will undoubtedly experience.

 

Burying one's head in the sand and ignoring the elder will not make the problem go away.

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I thank you Mel for understanding what I was asking and taking the trouble to respond from your own observations of your own child for you know what was is, is going to cease to be where your child will enter the adult world and be very much on his own ill prepared because sheltered through support he has been ill prepared and this is the root of my question and my assertion that the young diagnosed and supported are in fact disadvantaged compared to the late diagnosed. And of the late diagnosed many of us suffer unsupported and that is why people like me come here to warn the parents of what could be coming their way.

 

Yes, I too am in a position now to warn parents with younger children. I often come across parents with younger children who are 'fighting' for full-time 1:1 support and I have no hesitation in warning them of the downsides that this can have too, especially on the child's ability to connect with other children in the class. Some parents want 1:1 support for their child during break-times too and this often puts up a barrier between the child and other children in the class, preventing other children from approaching them and, therefore, not helping, but hindering their chances of socializing and making friends, making it impossible, in fact! Having an adult velcroed to my child's side full-time made it impossible for him to mix with the other children in the class, it prevented them from wanting to come and talk to him and, in retrospect, was a big mistake so I have no hesitation in telling parents with young children thinking of going down that route to think very, VERY carefully about the affect this will have in the long-term, especially the social affects. Like I say, I don't know what the alternative is though.

 

~ Mel ~

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In my area I don't think are any specialist services available. If you are on ESA or JSA there may be opportunities to have a specialist career advisor (who may or may not be specialist, trained, or a career advisor) who's main focus would be getting you into work rather than seeing what help you needed to get into work.

 

I personally believe for those diagnosed at a young age, having a specialist to meet and teach life lessons that promote independence, like socialising, shopping, money management e.t.c and having a set course, with a folder or way of keeping track to ease them into these activities would help hugely. Because many with ASD rely so much on their parents, and because so many parents are so used to giving constant support, being able to step back slightly and let people learn for themselves but with some guidance would be a good plan I would say.

 

I know that I could have done with some help earlier, but a hands off approach made me learn a lot very fast on my own, so there has to be a balance dependent on the individual.

 

Great topic though, and I think self-help and site such as these will play a big part in adult services!

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I personally believe for those diagnosed at a young age, having a specialist to meet and teach life lessons that promote independence, like socialising, shopping, money management e.t.c and having a set course, with a folder or way of keeping track to ease them into these activities would help hugely. Because many with ASD rely so much on their parents, and because so many parents are so used to giving constant support, being able to step back slightly and let people learn for themselves but with some guidance would be a good plan I would say.

 

I know that I could have done with some help earlier, but a hands off approach made me learn a lot very fast on my own, so there has to be a balance dependent on the individual.

 

Great topic though, and I think self-help and site such as these will play a big part in adult services!

My sentiments exactly and thank you for stating it so succinctly. I think this type of help is a way off so until such time I make use of the services available in whatever form they take and as a parent try to teach these skills on a daily basis.

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I personally believe for those diagnosed at a young age, having a specialist to meet and teach life lessons that promote independence, like socialising, shopping, money management e.t.c and having a set course, with a folder or way of keeping track to ease them into these activities would help hugely.

 

I totally agree. My lad had absolutely NO help from school with his social skills at all. He was based in an ASD unit attached to a large mainstream school and had 1:1 support in some mainstream lessons, where they concentrated purely on the academic side. He came away with some GCSEs, 'A' grades in all the science subjects, but hadn't made a single friend in the time he'd been there and had practically zero contact with the other kids in the school. A fat lot of good those GCSEs do him now, when he still hasn't the life skills to be able to get out there and find himself a friend or a job. I'd rather they'd have spent their time teaching him how to make friends, how to have a conversation, how to relate to people, how to be independant and think for himself, they would have been far more useful and he could have done GCSEs at any time in his life, but I feel like now it's too late for him to learn the things he REALLY needs, he should have had help with those skills when he was much, much younger.

 

~ Mel ~

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Yes, I too am in a position now to warn parents with younger children. I often come across parents with younger children who are 'fighting' for full-time 1:1 support and I have no hesitation in warning them of the downsides that this can have too, especially on the child's ability to connect with other children in the class. Some parents want 1:1 support for their child during break-times too and this often puts up a barrier between the child and other children in the class, preventing other children from approaching them and, therefore, not helping, but hindering their chances of socializing and making friends, making it impossible, in fact! Having an adult velcroed to my child's side full-time made it impossible for him to mix with the other children in the class, it prevented them from wanting to come and talk to him and, in retrospect, was a big mistake so I have no hesitation in telling parents with young children thinking of going down that route to think very, VERY carefully about the affect this will have in the long-term, especially the social affects. Like I say, I don't know what the alternative is though.

 

~ Mel ~

 

My situation in all honesty, I left my mothers home at 21 to join the military even though I had no interest in war, it was a job and one was looked after, I left the military straight into marriage at 28, I thought I could cope as hey I could work even though I was always late for work even in the military they got fed up with punishing me, but seven years out of marriage and it is perfectly clear I can't cope. My eating is sporadic, I eat only when I really have to, my sleeping is stuffed, I have no social life, hardly go out and the money thing is a disaster and I have lost my confidence in work and so I am one of the hated the unemployed. Now realising my situation I have sought help only to be told there is no help I just have to get on with it and cope and that is what faces those soon to become adults.

 

My support though not ASD specific was my mother, the military and then my ex wife, all those supports made sure I was eating and sleeping regularly, they made me look after my health and helped in controlling my finances and I also worked as with me I have a need to please others. But all that is gone now and at age 38 I realised my limitations and four years later I got diagnosed with AS and there the answer to it all why I struggle so, but in reality the diagnosis was a waste of time as it does not help one's situation at all and in fact it hinders in terms of employment where the job centre have actually told me it is highly unlikely I will find work if I declare I have AS and if I don't declare it is likely I will lose my job in a very short time and so be punished by the benefit system that does not look kindly on people that lose their job, so my safest option is to remain unemployed and suffer the hatred of everybody for being unemployed and a work shy scrounger and lets not forget the DWP and their partners in crime ATOS Origin, a company banned in most other countries worldwide, but contacted by the UK government to kill the disabled and ill.

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In terms of the eating, why don't you write yourself a strict timetable to adhere to and stick it on your fridge door. Write down mealtimes at certain times throughout the day, maybe even set up an alarm to remind yourself. Make it into a routine and stick to it. Do you have other routines that you adhere to, i.e. getting up at certain times, going out at certain times, going to bed, etc.? Just factor in eating into your daily schedule.

 

~ Mel ~

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In terms of the eating, why don't you write yourself a strict timetable to adhere to and stick it on your fridge door. Write down mealtimes at certain times throughout the day, maybe even set up an alarm to remind yourself. Make it into a routine and stick to it. Do you have other routines that you adhere to, i.e. getting up at certain times, going out at certain times, going to bed, etc.? Just factor in eating into your daily schedule.

 

~ Mel ~

 

That's the thing routines don't work with me, I can do them for a short while then I lose interest. My kitchen is chaos I go to use something and find it's rotted as I seem to lose track of what I have got and when I got it and I have tried lists with dates, it works for a while then tails off as I forget to add and remove from the list.

 

I am aware I have some issues with attention deficit but I am not seeking any more diagnosi given how useless the ones I already have are, I don't wish to damage myself any further.

 

Pre diagnosis I had a good diet and it was a routine, the same every day; fish, rice, egg, pasta and I was experimenting with Asian and Arabic cuisine, spices and such, but post diagnosis I lost interest and now eat what is cheapest and doesn't rot as tinned fish; sardine and mackeral which I have always eaten is too expensive now, so currently there is no meat in my diet.

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In response to the original question I don't think it's doing my son a disservice taking him to these specialised activities for fun though as Lyndalou said - there still aren't actually that many. We still do regular activities where he is expected to have to cope and mix with other NT children so it's not like he will reach adulthood and have been sheltered, he will have learned, as much as possible, how to deal with life.

 

I am perhaps coming at it from a different perspective though as his difficulties are such that he's never going to live a completely independent life so although he will need to cope, he will always have support.

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