What difference would diagnosis have made?

[Mannify]

As a mum, relative and friend I'm intrigued what difference those of you with diagnoses as adults think being diagnosed as a child would have made. And those diagnosed as a child, what difference do you think it did make?

[Special_talent123]

well i was diagnosed age 14 bit late but I never knew until age 16. Although i had a diagnosis of learning disability, my behaviour was a concern and social services were involved around age 12. but the social worker would help me to get involved in youth clubs, teach me personal hygiene etc. A diagnosis that i know i have helped me to change - less outbursts because NAS helped me understand myself. I had speech and language therapy as a kid.

[Mannify]

Thanks, that's such a valuable thing to say, Special Talent. We've always been really open with our kids, because we think that self-knowledge is really useful to them, and we think we're doing the right thing in always just discussing autism openly with them. We did so right from the start.

[indiscreet]

It's impossible to say what difference a diagnosis as a child would have made to me. It would have meant that I wouldn't have had to carry the burden of being 'different' and blaming myself for it but against that I might have fought less hard to cope in an NT world. I might have sat back and said "I can't do that because I have AS" and if I had received financial support I might not have struggled to work for a living. I just don't know.

[Athrylith]

No regrets. Only lessons.

 

But, probably a huge difference, as much as predicting alternative causal timelines is impossible.

 

Thanks for your sharing people:-)

 

Life has been almost impossible for so long that it just feels normal. I'm hoping that the diagnosis may change this a little.

 

But to be fair, it seems that those difficulties (moving 18 times in 16 years, being homeless twice, 10 jobs in 12 years, partial bankrupcy with Debt Relief Order., no contact with mother after step-father threatened me with a knife on xmas day, being ran over... etc., etc., I'm only 32!) have made me wiser, sharper, stronger, more positive, more practical, more confident.

 

I'm glad that the endless pain has happened, as I learnt how to grow in reaction to suffering.

 

No that I see that 90% of what has happened is becauase of Apergeres and ADHD, the consiquential depression and social confusion, the other malady's in turn, it does all seem like an unnessary decades long catastrophic accident - but I wouldn't wish to go back and change it.

 

That being said, I've yet to experience prosperity, and when I do, I may think differently lol!

[Mannify]

Thank you, indiscreet and Athrylith, for your insightful replies. Yes, it's impossible to predict alternate realities, really, isn't it? And very hard to extricate varying environmental factors from each other, whether that be diagnosis or other occurrences in life.

[Sa Skimrande]

Given the fact that I am forty four this year diagnosis as a child would not have happened, although autism was known about and it was I understand suggested at one point but my father quite rightly in my belief resisted the suggestion down to the fact that special schools were little more than holding pens for autistic children back then where people that went to them actually degraded and there was an autistic child that lived near us who was at one of those schools until his parents took him out of it and put him in the mainstream where he stayed and from what I remember he actually got better as he was my age and in my class at school.

 

I guess for a suggestion to be made I did at the time display enough for a particularly clued up primary school teacher to suggest autism, but I was not that bad to warrant special schools. Sure I was a loner for most of my school life and suffered bullying all the way through school, senior school particularly where it got very nasty, but I just went with the flow as others got bullied too and in reality school life was preparation for the real world where bullies come in different forms but they are still there.

 

The result is I through being in the mainstream I have developed my own coping strategies which are always open to modification when what I know no longer works such that when I was finally diagnosed it was dyslexia I was being tested for but the educational psychologist being an aspie himself knew what he was looking at and he said I am clever I have created a facade that allows me to get by, but to the clued it's all in the eyes and how did I know what to do in such situations as was presented, I said I used to struggle and so to not struggle I always watched other people and copied because what they do seems to work for them so it should work for me. He told me the college I was attending had me down as an aspie even before coming to see the psychologist, they thought I knew and was just braving it out. But I was always was the last to hear about anything concerning myself.

 

My only negative as reagards this diagnosis is as I have said elsewhere, the job centre now knows and as long term unemployed who has undergone the ATOS abuse I have now to find work but the job centre have actually told me, they believe they cannot help me find work as in their view I am unemployable and so they leave me alone. But pre diagnosis I held jobs and I was good at what I did, I never progressed in any of those jobs and I now understand why, my people skills are somewhat lacking and one can be the best technical mind possible, but if one cannot manage people, in this society you are nothing and I was a very good technical mind as my jobs were always jobs involving trouble shooting, I had the ability to see beyond the obvious and so guarded against what most never thought of, but that is in the past now, as now, I have lost the confidence in what I used to be able to do, some of that is long term unemployment, the rest is I now understand I am flawed so what's the point trying as I know I won't get anywhere, my efforts as before will not be rewarded and now I understand why, so again why bother.

 

I have tried to get out of this negativity too many times and I always end up back at the same point, that being trying to get out the negativity and it is exhausting and I am running out of ideas now having tried so many.

[darkshine]

I'm with Indiscreet on this one - its impossible to tell, but I'm in the mood to give it a shot.

 

I'm intrigued what difference those of you with diagnoses as adults think being diagnosed as a child would have made.

 

I think that judging from my family and the way they were and stuff that I do know - I think the main difference is I'd be locked in my bedroom still, I wouldn't have left home, I wouldn't have moved 200 miles away, I wouldn't have started a new life and learnt to cope with finances or making sure I eat, I wouldn't have spent 12 years in the mental health service trying to sort myself out, I wouldn't have done any of that.

 

I think what would have happened instead is that due to the highly negative and harmful beliefs in my family I'd be rotting away in a small room - and all those labels I told the shrinks and docs and psychologists to go stuff up their ass - well I'd have a nice string of them by now if my mum had got anything to do with it, cuz those labels would have enabled her to put the blame and guilt elsewhere.

 

Its all too easy to go "I wish" but the fact is, the way my family are, it would have been highly likely that everything would have been worse than what it was, cuz all this stuff I've tried to do, its taught me stuff.

 

Of course there is a mild chance it could have gone the other way and I'd have been supported etc etc - but the truth is, and I'm not just being negative here - my family just weren't that way inclined when I was growing up - I don't see how a diagnosis when I was younger would change that because being depressed didn't change anything at that time, nobody helped me, I don't think a diagnosis of Aspergers would have changed anything for the better cuz there would just be more negative beliefs than there already was.

[Shnoing]

Given the fact that I am ...

Almost all goes for me, too, only I'm 41 and I'm employed in my one-and-only job which I got before my dx.

 

My son's got his dx at age 3, so you've got a question which I've posed myself over and over again: what would a dx of myself in the 70s have changed? It wouldn't have been better, I think: the schools (2) I attended were so well-structured and the other pupils were so calm that I didn't need any accomodation (and I know what my son gets now at age 8) - either I was extremely lucky or the world has gone downhill steeply. (I personally blame the private TV channels).

One more fact: any weirdness I'd have shown would have been dismissed because my father has a professional doctorate - it's funny how this little thing changes how you're seen by others.

[Willow-Tree]

I got diagnosed at around 16/17 but I'd been in the process of getting a diagnosis since around 14. Having a diagnosis from the start would have made some things easier, school might have been able to make special arrangements for me with regards to certain uncomfortable situations like lunchtime, sometimes the uniform was an issue etc..but on the whole, I'm not too fussed. I think it's nice to know, just in case I need to explain myself.

 

My little brother was diagnosed as a child and I think it's had a negative impact on him, because even though my parents would disagree, I think he uses it as an excuse for bad behaviour, and to an extent my parents put the bad behaviour down to having Aspergers, when really, I think he could be a lot better. I didn't know I had it for so long and so I had to conform to normality in a way, and it was damn tough, but I think it's made me strong and able to cope in the real world.

 

People who I have seen with AS that have been diagnosed early on are somewhat more closed in and shy of the real world because through no fault of anyones really, they've been 'molly coddled'/'wrapped in cotton wool'.

 

So there are pros and cons to both sides, I just think it's harder to get on with life with an early diagnosis under your belt.

[LancsLad]

Firstly a good question Mannify. Possibly none at all. I don't believe it would have done anything to change the way people around me would have thought about me at all. My parents have struggled to understand what AS means today so nothing changes there. The teachers of the time wouldn't have seen it as being any different from any conditions and issues kids faced on a daily basis. And the kids at school would have treated me no better or worse. The same could be said of employers and work colleauges. So at the end of the day I would still have to have lived each day as life presented itself to me and would have had to overcome obstacles which were part of that life journey.

 

I would say that given a diagnosis I might have used the badge as an excuse not to take responsibility for my own personal development. I might have been tempted to say I couldn't do things because of AS. I might when I did make mistakes have failed to take responsibility for my actions and say it's not my fault I have AS and that is why I did it.

 

So in many ways as someone with the condition I can see no advantage in being given the badge at an early age because it doesn't come along with a new set of parents, teachers and friends. For some kids they might be lucky in this respect but many might not. When it comes to parenting I can see that for some post diagnosis parenting might improve a little but I suspect on balance the parenting response might well be negative over a broad sample.

 

When I was a foster carer I worked with kids who had issues in their lives easily as comparable to those of my childhood. I find it interesting that for a lot of the time my efforts were directed at trying to normalise their upbringing from that point onwards. To create an environment where a normal childhood and normal development processes could take place. In those environments labels such as deprived or abused were to a large extent irrelevant to the well being of the child. What was more important was they were seen and respected as an individual.

 

In a way development simply has to take place in relaxed, caring and supportive environments which reflect the demands of society. A lot of the time I knew that the children in our care did not have the emotional capability or mature enough thought processes to deal with labels such as 'abused'. Those were things not to be forgoten but to be understood and dealt with at an appropriate time. In a similar way I question based on my own experience is AS a label which benefits the child durring the first part of their life, or is it something we should take on board as an adult when our skills and experience is such we are able to deal with the issues in a constructive and positive way. I think we are in danger of placing labels on kids which might serve the interests of the adults around them but do little to create positive individuals who are able to take responsibility for their own lives.

 

A few personal thoughts.

[justine1]

I have enjoyed reading some of these comments and agree with most of what has been said. I wonder though when we say the "label" may have changed things with regards to using it as an excuse for negative,does this not still apply once diagnosed as an adult? Is it not possible to look back and say "oh I must have done X cause of my autism" which is the same thing as making excuses when young IMO.

 

Personally I never went out to get a diagnosis for Sam,I did believe something was wrong but at the time had no access to internet so unlike other parents I could'nt/did'nt google anything. It was only when he was 5/6 years old the school he was at (the third school he had been to) told me to takehim to the GP. I just thought they would tell me to go to parenting courses(I had already done two on my own accord.) I was surprised when they said its ASD.With Dan's dx it was different as I now had more knowledge on ASD but even though I thought thats what it was I went to get a referral for his eating as that was my main concern andfrom there he to was dx'd. But I never knew about the dx before and had raised them just fine,so I never changed.

 

My boys are mixed race so I already push them harder,we live in a very competitive world so I want them to be the best,that does not mean I want them to be surgeons or MP's I just want them to excel at what they want to do. I make sure they never make excuses for bad behaviour in fact my family even ask me why I do this. Recently my brother took his two kids to an indoor play centre and there was a boy in a tunnel throwing balls at every child who entered,everytime he done so his mum would apologise saying her son is autistic. My brother has never heard me do this so asked me why,I replied well how do I know Sam or Dan is doing that because of his ASD or just because he wants to be a brat? I do say to people that we have to leave because one of them is acting up but don't elaborate. Both of them go to mainstream schools(although Sam is in a unit for most of the school day) so they don't have excuses at school.

 

I am glad they have a dx only because(in Sam's case in particular) it has given them more of a chance. Sam had missed out almost a year of schooling because we had no diagnoses the LEA would not even send in an ed psych or behaviour support for him and the school just could not cope. He definatley would not be doing so well if he had no statement and as a result I am able to work and study,which I believe will be a positive influence on all my children,if not I would have had to home educate him.

[darkshine]

I have enjoyed reading some of these comments and agree with most of what has been said. I wonder though when we say the "label" may have changed things with regards to using it as an excuse for negative,does this not still apply once diagnosed as an adult? Is it not possible to look back and say "oh I must have done X cause of my autism" which is the same thing as making excuses when young IMO.

 

I think that's a good point and the label can do that at any age - I suppose the point I was trying to make with my response (perhaps not very clearly) is that in the case of my parents I have a feeling that the label would have been used in ways that would have placed negative beliefs onto me regardless of whatever I thought or felt about it, and there were enough of them already.

 

For example I could see my dad being ashamed of the label because he cannot accept it even now, there's a fair bit of denial, although he is slowly asking the odd question so who knows, but I can also see him coming down on me harder than he did to try and normalise me.

 

As for my mum, well... the sad thing is I can see her as this matryr having to deal with a kid with AS, I can see her demanding I should be helped, pawning me off to get respite, but excusing my behaviour by not assisting me to facilitate change, and I also see that could have led to a split between the label and my behaviours occurring - she would either be like that or minimising of the whole thing and saying that we all struggle with exactly the same problems - I can see her doing a lot of things - from experience some of those apply anyway.

 

Technically speaking I see more possibility of being so sheltered and coddled and "protected" that I'd have been like an animal in a cage - of course, I am still me so there would have still been that likelihood that I would have still said screw you and done a bunk anyway

[Sa Skimrande]

Thinking on this today, I feel very strongly that kids being diagnosed with this thing are at a massive disadvantage compared to us late diagnosed and where we know there is no help for adults that have been bumping along through life with varying degrees of success and failure, the children being diagnosed and given what support is available they will soon find all that dry up when they become and adults and they will be well and truly lost and that through the varying degrees of molly coddling aspies may receive as children, they simply fail to learn how to survive in the that is society with all it's pitfalls and other dangers, they are in for a very rude awakening when they hit adulthood and I can see this their future if they don't manage is mental health issues where they will run the gauntlet of various mind warping, often zombifying and downright unpleasant medications that cause all manner of not nice side effects which only make the issues worse until it just happens if it happens a medic might actually find a more suitable medication and dosage, but most of it is rial and error and it's terrible.

 

But the system is wrong if it supports childhood aspies and then discards them when they become adults, if services were available for children with this thing then one simply does not grow out of it, this thing continues and so, so should the care, but if the care is available to some adults, why then not all the adults with this thing.

 

And to think, we live in a first world country, the eight richest in the world and we are in the twenty first century, and just look at it, how we have progressed.

[raydon]

I was brought up in the 1950's so diagnosis was not possible, but the symptoms would have been the same, just not understood.

The big difference is, there was no medication then, so behavioural control was deprivation or physical.

I don't see this as disadvantageous, because it did prepare me for the real world. It taught me cause and effect very efficiently.

Edited October 26, 2012 by raydon

[justine1]

There is no medication for kids with ASD so nothing has changed there.

[Sa Skimrande]

They will get it when they hit adulthood as the inevitable depression, medics dish out pills as though they were sweeties and where the NHS guidelines for depression state medication with talk therapy, the talk therapy is one of those things that is too expensive and so rarely happens and if it does then it months waiting lists, with generally a maximum of six sessions and that's it, it achieves nothing.

[raydon]

There is no medication for kids with ASD so nothing has changed there.

 

I'm glad to hear that. How are tantrums and headbanging for example dealt with?

Edited October 26, 2012 by raydon

[trekster]

Knowing what makes me different from NTs is really important to me. It can help me plan realistically for my future. When i was at college for the 7th year (lack of services in school and later in college until City of Bristol really helped) i thought i would go to university and get the 1st job i applied for. i am now severely depressed because of my lack of support in getting employment in my situation.

 

So i feel an earlier diagnosis could have saved me from a number of let downs in my life. i could have done more research about autism because up until i was 16 my goal was to find out what i had. Years later i still haven't been diagnosed with the full level of disabilities that i actually have, the irony? When i was a kid i used to think 'it would be terrible to be disabled' little did i know was that a) being disabled is fine and b ) that i am disabled.

Edited October 26, 2012 by trekster

[Sa Skimrande]

Knowing what makes me different from NTs is really important to me. It can help me plan realistically for my future. When i was at college for the 7th year (lack of services in school and later in college until City of Bristol really helped) i thought i would go to university and get the 1st job i applied for. i am now severely depressed because of my lack of support in getting employment in my situation.

 

So i feel an earlier diagnosis could have saved me from a number of let downs in my life. i could have done more research about autism because up until i was 16 my goal was to find out what i had. Years later i still haven't been diagnosed with the full level of disabilities that i actually have, the irony? When i was a kid i used to think 'it would be terrible to be disabled' little did i know was that a) being disabled is fine and b ) that i am disabled.

 

Except the British Government does not recognise Aspergers as a disability although both MIND and the Job Centre I use recognise it as a disability in terms of work in that they know employers are not keen on employing known aspies, for there is too much negative press associated with it, although I do hear there are precious few employers actively seeking aspies because they recognise the qualities many of us have would be of use to their company. What was it someone said once, Aspergers is the hidden disability.

 

But a rather old article which sums it all up

 

And one job I was in when my ex wife took it upon herself to decide I had aspergers, a good seven years before I was officially diagnosed, but had obtained literature from the NAS to which she sent to my employer following a phone call she had made without my knowledge telling my boss I was the way I was, i.e. difficult, because I had aspergers syndrome. My boss was not too pleased to say the least and it did affect my future employment whereas in my capacity as technical manager and workshop foreman I was given a free reign prior to, to manage as I saw fit, after my chat with my boss I noticed my boss sticking his oar in where he was not wanted and he actually caused a happy and productive workshop to become unhappy as he countermanded my decisions and so my workforce no longer knew where they stood, should they ask me or should they go upstairs and ask the boss, for I was side lined. But I got my own back, I quit and went to a competitor where I took my bosses custom as again being a workshop manager I was given free rein, less pay with more stress but being sidelined one has to get out of it as it is soul destroying, but my old company ended up sub contracting my services as my workforce at the old place quit after I quit and the company could not get anyone else who could do what I could do for the pay and the cheeky sod was offering less than I was on. Feedback from customers that used both companies said their machines were getting unreliable and of course they don't do customer repairs anymore, because that was my enterprise and I took it with me.

[Mannify]

Thank you all for your interesting insights. It's intriguing that the majority of responses have been ambivalent or negative. Somehow it still seems right for us to talk about autism with our kids, and I think that autism as an explanation has helped to explain some extreme behaviour on the part of our middle son towards his sister. But, as these comments show, it's so easy to take a simplistic view of what's best. Sa Skimrande's point about the support drying up in adulthood is one which does concern me as a mum. I don't know what the answer is, really, because I know that my son's special school is best for him and he's learning so much better there, but it is a cossetted existence. He's 7, and for now I try to ease him towards greater self-sufficiency in small ways. For example, I get him to help me with the online Tesco shopping. He's good - he remembers stuff that I would forget. The plan is that as soon as he is able (which may be years, I don't know) we'll get him to do the shopping for us. My older son is amazing on computers, and my husband constructively encourages him and guides him with that because we hope there's employment there for him in some form or other. But I still feel that as a family we needed diagnosis.

[justine1]

I'm glad to hear that. How are tantrums and headbanging for example dealt with?

 

Not sure about headbanging. My two boys have rocked,flapped and do other "stimming" behaviour I think the more I have made it "ok" for them to do it and not stopped them the better. They have over time realised they cannot do certain things when we are out as they may hurt others or themselves but at home they have the need to do it,my 9 year old does it more when he is excited and it can go on for hours but he is happy and not hurting anyone so its fine.

 

Tantrums like any other should have course have a consequence/sanction depending on severity. Sometimes my boys may "kick off" for something that in part is my/or schools fault and sothey just go and let off steam in their room,there is nothing in there for them to break and they cannot harm themeselves. They will cry and scream for up to an hour and then come out as if it never even happened. If it it something where they are rude/disrespectful or break something (neither of them really lashed out physically) then they lose computer/xbox/telly time from their timetable.

 

I work closely with the ASD unit on behaviour strategies so that there is consistency. But thats just me others may medicate for hyperactivety,the lack of sleep etc but thats not addressing the route cause which is behavioural and ASD,which as I say you cannot medicate.

[LancsLad]

I think history will show that the last 30 years or so has been a period where society has in almost every area of life failed to look at the bigger picture. Concepts and ideas have been completely distorted as individuals become more amnd more insular and have defended a position of having 'rights'.

 

We have now reached a position where it is obvious that those rights are unsustainable within a coherent society based on resources and knowledge. Aspergers is one such aspect of that problem. People have simply failed to see the bigger picture and how the diagnosis is best handled and integrated into realistic everyday living. In the recent past we have driven forwards with an Aspie industry geared towards children and teenagers with little or no regard of how such actions may benefit or be detrimental to their futre lives. That industry has been one about 'rights' the rights of parents and the rights of schools and local authorities. We have had a culture of charitable organisations which are self serving and likewise paint a distorted picture with the aim of raising finace to support its own actions. As a result they are not representitive of large sections of the ASD community thought their mission statements might say otherwise there is little in the way of big picture evidence from them.

 

In trying to draw my own conclusions over this excellent question I tend to reflect a lot on the AS group I was part of at university, one in which I was double the age of every other member, as such they all had a diagnosis early in their lives in my terms. The first point was that they are not representative because their intelligence would be above the average for the Aspie population, we are not all baby Einsteins and to build cliches around such concept does nothing for the 'average Aspie' in this country. The group was split between those who were coping and those who were not. Whilst some were coping with studies they were not with what would even remotely be described as expanded living. They were being handed out large amounts of support to get them through the course. In all honesty I believed that myself and two others would possibly be capable of getting through the experience without support, for us things like the AS group and student services were a real bonus but not an essential. When I looked at the rest of the group if I had gone back 20 years or so to my first university experience in a sink or swim environment they would have sank I am sure.

 

For me a lot of issues around support at the moment is at which point will individuals start to sink and is there much point in prolonging that period of time, or should we be really teaching them how to swim. To put a strong visual image into peoples heads in broader society you very rarely see an adult in the swimming pool wearing arm bands. The reality is these days having taken my son to swimming lessons at an early age they don't allow them there either. I do have my concerns that we have created an arm band generation of Aspies who think they can swim but are unable to go any great distance or hold good body positions in the water hence they are far from being efficient.

 

In many ways the label is not an issue, because that is all it is, a label. So if I had been given a label at an early age that is not problematic. At an early age I learnt what my blood group was and as such I have it written on a card which I carry out on my bike or in an sos lockect when climbing or caving. It has some use at that level but that is where starts and stops for the time being. The problems with a diagnosis are all about the transposed values which are brought to it by adults many under the banner of rights.

 

I will make this point. If some really good research came out tomorrow and came to the conclusion that on the balance of things it was depremental to diagnose children and teenagers with AS before the age of say 25 when they had developed the maturity to be able to deal effectivly with the diagnosis what would the reaction be. Would all the people involved think great that is a weight off our shoulders or would they be kicking and screaming and shouting that they had a 'right' to an existence within the current set up?

 

A lot of the time I think is this early diagnostic stuff about the kids and their best interests or is it just for the adults? I think the time has come to start looking at the bigger picture. It is a condition I can see that, it isn't a disability unless we want to turn it into one, we all at some point therfore have to take the responsibility onboard in trying to learn how to swim if we are to integrate into society in any sort of meaninful way. I am not sure if the current scenario is handing out swiming lessons rather arm bands which deflate after a few years. Some people might be wise and knowing that have a period where they transition between using them and swimming unaided. I have to say I have seen little evidence of that level of maturity within the young Aspie community which should be expected, rather they think they have a right to armbands for life.

 

Just a few thoughts.

[raydon]

Thanks Justine1, that doesn't sound too different to how I was handled.

 

Parents are still parents at the end of the day, and have to cope the best they can, but looking back, it must have been very difficult for them.

 

So back to the original question, I don't know the answer, I have no reference points, but I have still learnt from this discussion.

Edited October 27, 2012 by raydon

[indiscreet]

I have enjoyed reading some of these comments and agree with most of what has been said. I wonder though when we say the "label" may have changed things with regards to using it as an excuse for negative,does this not still apply once diagnosed as an adult? Is it not possible to look back and say "oh I must have done X cause of my autism" which is the same thing as making excuses when young IMO.

 

After I received my dx I was able to look back and see that many of the things I found difficult to do/made me miserable were caused by my AS and this was a comfort; If I'd already received a dx when young I might just not have made the effort to be 'normal'.

[Sa Skimrande]

After I received my dx I was able to look back and see that many of the things I found difficult to do/made me miserable were caused by my AS and this was a comfort; If I'd already received a dx when young I might just not have made the effort to be 'normal'.

 

That was me as well, but with it was where do I go from here because my methods have not worked and there isn't anything else coming up in terms of education to do different as there is not the support simple as that. I have stuck out like a sore thumb most of my life and things are not changing, which could be part of the reason for my persistent depressive thought processing which keeps me on benefits as a drain on the tax payer as sure I would very much like not to be on benefits but I don't know where to go from here or what to do, as there is no help from anyone.

[justine1]

Definatley think its down to the parents,as most have mentioned. A point I was going to make is if you look at the ASD community it is largely white middle class society,why is that? My own theory is that prehaps there is an equal(or slighly fewer)population of other ethnic groups living with ASD but have no diagnosis and function just fine in society,really believe it is down to how they are raised. Ethnic minorities (generally) put more pressure on their children to succeed,there is also far more discipline(prehaps not the "right" sort) which works in the long run,as far as respect etc. Of course it is also down to culture and the fact disability/having a condition of any sort is not always accepted by everyone and if someone's status in society will be affected I suppose they will brush any thought of diagnosis to one side.

 

I personally believe as parents we should raise our kids to be the best,whether they have ASD or not. I look at myself and question am I doing the right thing but only time will tell. Some parents say "your boys have ASD they don't have to go out or they can skip that lesson as they not coping..." etc so maybe I am wrong maybe I should be making allowances for them. I have five kids,two with ASD but I still work and study whilst others sit at home and claim carers allowance. I am not judging them but I don't think it gives my children the right impression about what life is about. They do not know about benefits they see me working hard and providing for them,so they know they will have to do the same to provide for themselves. Another point is Sam gets DLA and has a statement but despite Dan having a dx of HFA and hypermobility syndrome I do not claim DLA for him and although I may one day get him a statement at this point he does not really need it.

 

So again I really do think its down to what the parents make of the diagnosis,it does not have to be negative,limiting or used to gain something for nothing.

[LancsLad]

A point I was going to make is if you look at the ASD community it is largely white middle class society,why is that?

 

I think one answer might be that this section of society feels it is somehow deserving of a priveledged position. When a child comes along which might not be best placed in respect to other children from a similar background these parents feel a need to excercise 'rights' to create a position of equality and equilibrium back into their own lives not neccesarily their childs.

 

In contrast individuals from my sort of background definately don't feel they are in a priveledged position at all, far from it. As a child and an adult I knew I had a choice deal with the issues of life and work hard. If I did there might be the possibility of a better life but no guarantees. I don't think things have changed in this respect.

 

I think it would be interesting to plot life outsomes for people with for example AS against their peers, it would not surprise me that individuals with AS from relatively deprived backgrounds did Ok against their fellow peers compared to those from more afluent backgrounds. So is AS a disability in complex middle class social scenarios where who you know is more important than what you know to use a cliche? Yet in a section of society where skills are valued as is the ability to get on with things it is simply a condition. If so maybe the answer for a lot of middle class white parents is to move home when they get a diagnosis for their child and send them to the local state school in 'challenging circumstances' and their kids will fit in just fine and developed a well rounded and balanced view of themselves together with the skills to move on in life.

 

Personally I have taught in a number of schools including those in 'challenging circumstances' and as such I have come across kids who are simiular to me at their age, some with a diagnosis many without and I would suggest the above suggestion has a fair bit of experience behind it.

 

Just a thought.

[Shnoing]

... If I'd already received a dx when young I might just not have made the effort to be 'normal'.

That's a sentence that had me thinking. But I have to say, that I - probably due to lack of theory of mind - have never had the idea to make excuses for anything: the concept of making excuses is so totally alien to me that I only learned it recently, and the only excuse I've used so far is my "old age" (41).

As far as I have seen it, my son at age 8 hasn't started to make any excuses so far, although he has got his dx at age 3.

What I'm aware of, at least in theory, is that non-autistics (with theory of mind) surely learn to make excuses at a relatively early age.

[trekster]

Ska skimrande wrote;

"Except the British Government does not recognise Aspergers as a disability although both MIND and the Job Centre I use recognise it as a disability in terms of work in that they know employers are not keen on employing known aspies, for there is too much negative press associated with it, although I do hear there are precious few employers actively seeking aspies because they recognise the qualities many of us have would be of use to their company. What was it someone said once, Aspergers is the hidden disability."

 

Was wondering where you got the idea about the Government not recognising Aspergers as a disability? The Autism Act was brought into account for those at the so called 'higher functioning' end of the spectrum. i say so called because you see someone whose highly verbal and find it hard to accept that they have difficulties combing their hair and getting daily routines done that NTs manage without thinking. Unless that was your point?

 

When someone uses the term aspies I feel that is describing someone who is very positive about being asperger (an autie would apply to ASD/autism). Sometimes im an autie other times im autistic if that makes sense? I guess im saying i agree with the 2nd part of your above quoted text.

 

Totally disagree with your wifes actions. In fact people who take matters into their own hands are IMHO making it less likely for the ASDer to trust that person. At the same time i understand she was worried and thought she was doing her best at the time.

 

Shnoing with regards to making excuses for your actions/intentions I dont feel autism/dyslexia or my other disabilities are excuses, they are valid reasons. Quite a bit of autism biographies mention that getting the autistic to 'just try harder' is effectively doing more harm than good. If people dont wish to accept me for who I am then they're not worth knowing IME.

 

This is a really interesting debate and thanks to the OP for asking the million dollar question.

[trekster]

I'm not sure if ive mentioned this before on here but if I had grown up with non-disabled parents I would have been less

open minded about hidden disability. There are quite a number of deaf relatives in our family and in some respects

deaf culture can be similar to autistic culture in that many deaf folk prefer it that way ie prefer to avoid cochlear implants.

That was the message i got from a see hear programme sometime ago.

[justine1]

A point I was going to make is if you look at the ASD community it is largely white middle class society,why is that?

 

I think one answer might be that this section of society feels it is somehow deserving of a priveledged position. When a child comes along which might not be best placed in respect to other children from a similar background these parents feel a need to excercise 'rights' to create a position of equality and equilibrium back into their own lives not neccesarily their childs.

 

In contrast individuals from my sort of background definately don't feel they are in a priveledged position at all, far from it. As a child and an adult I knew I had a choice deal with the issues of life and work hard. If I did there might be the possibility of a better life but no guarantees. I don't think things have changed in this respect.

 

I think it would be interesting to plot life outsomes for people with for example AS against their peers, it would not surprise me that individuals with AS from relatively deprived backgrounds did Ok against their fellow peers compared to those from more afluent backgrounds. So is AS a disability in complex middle class social scenarios where who you know is more important than what you know to use a cliche? Yet in a section of society where skills are valued as is the ability to get on with things it is simply a condition. If so maybe the answer for a lot of middle class white parents is to move home when they get a diagnosis for their child and send them to the local state school in 'challenging circumstances' and their kids will fit in just fine and developed a well rounded and balanced view of themselves together with the skills to move on in life.

 

Personally I have taught in a number of schools including those in 'challenging circumstances' and as such I have come across kids who are simiular to me at their age, some with a diagnosis many without and I would suggest the above suggestion has a fair bit of experience behind it.

 

Just a thought.

 

I agree with most of what you are saying however my experience is that I grew up in an african country(I am english though) as such the population is majority black ethnic groups. The social classes vary within the ethnic group...another point is you get different levels within each social class...however I never in 19 years came across or heard of anyone whose child had ASD.

 

Whilst some may argue that it is down to being a third world country,this is not the case as white population from all social backgrounds did have such diagnoses. In fact my brother was diagnosed in 1989 as having ADHD.

 

Anyway thats just my own experience. Definatley think it is a very good topic Mannify,thanks for posting.

[LancsLad]

In response to Aspergers and ethnic groups. I have worked in a variety of schools and where there hads been strong ethnic mixes. I would say I have seen what I consider to be cases of AS type behaviour across all groups predominantly boys but not exclusive at all to white children. When it comes to special needs my feeling is that in ethnic groups a lot of kids who are from ethnic groups (non white) tend to recieve a diagnosis following moves by the school. I would say that is also the case with lower class groups. In contrast I believe white middle class society has grabbed hold of the notion of 'rights' and embraced it as a cultural phenomenon.

 

I for example have known a lot of British Pakistani/Indian families through playing and coaching a lot of cricket with them. Their cultural notion of schooling for example is to send them to the local primary or comprehensive. If they work hard and can afford it they would consider a private education. In my experience what they are not interested in is exercising rights to choices around the state sector.

 

Interestingly I was out running this morning and went through an area of town which is in the main a Pakastani origin community. The was a boy of about 10 to 12 out on the street in his pyjamas having a controlled meltdown on a street corner first impressions were he was autistic. He was making loud gutteral noises and spinning and arm flapping to let off a bit of steam, completely oblivious to anyone around him. He was being supervised by an older lady of around 70 years of age and a girl of around 14 and was perfectly safe. There were other people out and about and they were not paying a single bit of attention to him rather it was a controlled and very accepting scene. The odd one out was a white middle aged man in his running gear.

 

Personaly I believe ASD is there in all sections of society and to a large extent in the female population. A lot of the time though there are issues, they can be accomodated and assimilated into community living. I think some social groups are far better at doing this than others. Those same groups are also less likely to exercise rights to external support rather they have a culture of self sufficiency.

 

The concept of 'rights' has grown in line with the growth of the white middle class. In many ways I think it could be read as a sign of insecurity and the fact we have moved away from communal models of living.

 

I was brought up in a run down white working class town surrounded by low living standards and deprevation. I knew i was different at the time and I can see now a lot of that is because of a condition called AS but I never felt disowned by my local community rather everyone had a place and was accepted. For example I was rightly suspended and expelled from my local schools but they always found a way of taking me back in, I was never completely rejected, but then again I never thought they were not good enough for me which might have helped.

 

I think the reality is that a diagnosis of the condition is all about access. And if we traced the origin of every diagnosis I suspect an overwhelming majority will all start out with white middle class individuals be they parents, GP's, school teachers or educational psychologists etc... If there is a question to be asked it is not about the scope of ASD in our society but it is about percieved access to a state system from what appears to be one main group which is possibly self serving and not too interested in cultural groups which is different from their own.

[Shnoing]

... if we traced the origin of every diagnosis I suspect an overwhelming majority will all start out with white middle class individuals be they parents, GP's, school teachers or educational psychologists etc...

Follow-up question: is this a good thing or a bad thing?

Should they take part in society or should they keep themselves to themselves?

[LancsLad]

I think it depends on what you mean by taking part in society. If for example you have a kid with ASD who is well balanced holds down a paid job in say a supermarket and is an accepted part of thier local community, where do they stand? If they have not sought a formal diagnosis, been to a special school, recieve formal support and don't aspire to a univesity education are they missing out on society? Some people may shout "but they have rights" but is this right or wrong?

 

And in many ways this completely highlights my point. As someone with AS I fully understand what the condition can entail. As a teacher who has also spent time in special schools and with a partner who is a SENCO with over 25 years of experience I have some undesrstanding of things, I have aslo been a foster carer in that system. I am not diminishing the condition in any way. What I am passing comment on is the culture which has been built around it and asking the question is that culture in the best interests of the majority of kids with AS in this country. I think the responses so far say it might not neccesarily be so. In trying to find answers to why that might be so one conclusion might be that it is self serving to certain sections of our society. One approach might be to ask why do those sections of our community seem to need more support and in other sections kids with AS for example may well do better in respect to contentment and self esteem?

 

I think we have developed a white middle class culture where there is a lack of individualism and in effect those parental groups are petrified if their child is different and so want society to compensate for that difference in inappropriate ways. Personally I think what this post shows is that 10, 20, 30 or more years down the line that difference is still there, yet people are still having issues. A lot of those issues are about acceptance and a feeling of "life is not fair". That is a basic desire for compensatory measures to be put in place. But put simply life isn't fair rather it is what it is. I agree as humans we need moral support and when sections of society have gone down the line of living very insular lives in an attempt to seek their fortunes then should we be putting in lots of moral support?

 

Personally I believe the culture of Aspergers is not sustainable and a lot of it doesn't work anyway. In many ways it is an extension of a white middle class culture which is also unsustainable. As a broader society we are going to have to realign many aspects of our lives to a more sustainable model and that will be a shock for some sections of society. Some sections will be far more resiliant than others and will adapt quickly others will find it very difficult. In many ways our house values have become vastly inflated, the level of salaries in the service sector are often rediculous given the amount and nature of the output. Our use of energy and other resources is well beyond the planets means to deliever. And sadly our cultural expectations around Aspergers are misplaced. I think the way forward is to understand we can't manufacture some corporate solution when it comes to peoples lives. We have to take responsibility look at our own localised environment and find a role within that scenario which works for us. Things will not be perfect but they might well be sustainable and that should at least offer a level of comfort in a complex world.

 

Just a few personal thoughts.

[Sa Skimrande]

Isn't the purpose of all this help that the young ASD people are getting for inclusion in society as in getting a relevant education standard, a job, getting married buying stuff and having kids ? Because if it's not, what exactly is the use of it and what other are ASD people supposed to be doing otherwise, because I can tell you life on benefits is no life, it is cognitive destruction and quite possibly for this country, the nearest one can get to hell on earth and especially now where the general public has been educated to hate ''benifit scroungers', and it's getting nasty out there, for there has already been cases of violence enacted on benefit claimants for being what they are.

 

As to Asperger's being unsustainable, I agree as just what are we going to do with all those aspie kids when they come out of school bearing in mind very few employers will employ aspies, but then the employment market s not good anyway what with sod all industry these days and an ever increasing population that was not adressed when industry was either killed off or driven overseas in the 1980's. It is being addressed now under a different name, but it is too little too late we already have the problem of high unemployment and it set to get higher, I have no doubt about that as heavy industry involving manual work is a thing of the past, now it's all mechanisation and as little staff as possible.

 

But Asperger's is an industry in itself, just look at all those medical professionals that have work because there are aspies, it could even be said they are protecting their industry by discovering more and more aspies, but in discovering more and more aspies are they creating problems for the future ? I am inclined to think so unless there is a sudden sea change in employability, but with a large glut of NT unemployed, aspies will be at the bottom of the barrel even if employers are forced to employ aspies.

[Shnoing]

... I think we have developed a white middle class culture where there is a lack of individualism and in effect those parental groups are petrified if their child is different and so want society to compensate for that difference in inappropriate ways. ...

I thought about your statement for some time and it seems that I do come from a family where a statement - at that time - would have been unthinkable. You had your values, and rules, and as long as you kept to them, everything was ok. It seems to me, though, that only in the past 20-something years there's that additional need for flexibility, which doesn't allow for "eccentrics" any more. (Afaik, the uncles etc. which I would say were autistic all got their professional doctorates, referring to really really weird subjects ... which no one would understand anyway. But they got their jobs on that basis.)

 

So, no white middle class for me ... (white catholic minority culture?)

[Sa Skimrande]

Not middle class for me either, comprehensive school, single parent family and yeah cash was tight I remember that where jumble sales my mother used to obtain clothes from for us where she used to press the item and put it in a popular clothing store bag to hide the fact the item of clothing was from a jumble sale.

 

But eccentrics where they may not be allowed elsewhere, down here in Devon, the place is full of them and the further south west one goes the more flakey it gets, I feel quite at home and it is why I moved here as I certainly did not fit in in Oxford where I was living for ten years nor my home city of Liverpool.

Edited October 30, 2012 by Sa Skimrande

[bobbybaggio]

Good question.

 

If I had been diagnosed at a young age I believe I'd have been bullied even more and had fewer friends. This is down to the fact I was born in the 80's and went to school in a small village/town where being different wasn't received very well. I also don't think I'd have tried pursuing the life I have because I'd have known ahead about the difficulties I'd face and be put off by it. It has been a very painful journey but I think by getting through it I've made some big achievements.

 

I'm currently going through the diagnosis process as an adult and I think it'll also be good that I understand more what my strengths are and where I need more support. As a child or teenager I don't think this would have been an easy assessment to make.

 

So as difficult as life has been at times I would look back and be glad I've been able to get to where I am without support but also assured that I'll have support in the future if I need it.

[Special_talent123]

well I am on the YPAG group working with Department for education with civil servants isnt that inclusion.