Just wondering.....

[Sa Skimrande]

Now I know this forum is frequented by both the affected and those in care of the affected, I was just sort of wondering, those who are in care of , parents of ASD kids and such, are they listening to us older aspies ?

 

Because if you're not, you ought to, because the qualified 'experts' that have not grown up with it, don't know the half of it as they study children not adults who were once children totally ignored and had to make their own way in life.

 

So, what is it are we worth listening to, or are we just a bunch of grown up children that don't know what we are talking about ?

[trekster]

I have a few friends on here who are parents and i get the impression that many parents benefit from autistic perspective inputs.

[robert7111a]

I think as adults we can pass on our wisdom to our children. For the AS adults who have children, the adults are well placed to see the signs in their children first before any health professionals...of course I'm talking about the 35-50yr old adults who were never diagnosed as children themselves. Us adults are not listened to and I fear now that AS is to be taken out of the DSM-V altogether, what is to be become of tomorrow's children?

 

Does this make sense?

[justine1]

From my own point of view I think its very individual condition no two ASD people are the same,on top of that(no offense to the adults with ASD) you all grew up in a different era...whilst things are still a struggle it has definatley improved over the years. So for those reasons I dont always "listen" to the adults with ASD.

 

However there have been posts where I think that the adults have made a very valid contribution and I enjoy reading their experiences. It is reassuring to hear others have been through the same. Though I cannot always relate to techniques used or some of the views and opinions....but thats the same as with other parents on here.

[LancsLad]

The first point I will make is Justine you have come on here and been honest which as people can expect we do after all live in a society where free speach is allowed. What your comment highlights is the fact that I don't believe many parents do listen to mature adults with ASD. In similar ways to Justine I believe they construct thought patterns which means they give themselves permission to listen or not as they see fit.

 

This cherry picking culture is the real issue out there, we can decide what we want to hear about ASD and we can reject what we don't sound the likes of.

 

We have had a recent debate on this forum about charities namely the NAS and though I doubt this post will get much response from parents it does importantly raise one important question for me Sa Skimrande and that is, if anyone is to own ASD who should it be? I think the answer is charities often think they own the condition or parents do but very few of them believe individuals with the condition have any ownership of it whatsoever. If we have a voice it is only going to be an internal one. The problem with this culture is it is in my opinion transfaring onto young people with the condition who in my experience struggle to take any responsibility for themselves, which is the worst possible thing they can do. If there is anything to be learn't from older people such as myself it is without an early diagnosis and being surrounded by this culture we can move on in our lives and make real progress.

 

If you had to ask me in what area in life do I feel the least empowered and capable as an individual I would without doubt say it is on forums such as this and in the company of young people with ASD, their parents or professionals from within the sector. It is the one environment where I feel my experience, knowledge and skills are completly negated and neautralised and it is why I very rarely post on the forum these days. It is also why I don't get involved in my local AS group which is run by parents as I do not feel welcomed.

[watergirl]

This a very interesting topic, and one I have been wondering about myself, but for different reasons.

 

I joined the forum recently after I was diagnosed, and immediately wanted to get involved and talk a lot......which is one of my traits,...not knowing when to stop, or how appropriate I am being. It struck me a couple of days ago that there would be many people reading what I write, and that some (especially NT parents of AS children) who may find me a bit too "full on".......immediately it started the worry cycle, playing out conversations in my head and overall starting the spiral downwards towards low self confidence etc. My point is that the very nature of the condition can make some of us appear self centred and attention seeking, so I can see why parents may be dismissive of our thoughts and opinions.....but I would encourage them to listen and use our experience as parenting tools.....I am a parent myself, and one of my chidren (my son, now an adult) may have an issue of some sort..........I may never know though, as we are separated through unfortunate family circumstances.......and part of those circumstances were caused by my AS (which at the time was undiagnosed) and also my son's behaviour.......we clashed badly....his behaviour was much talked about when at school, but nothing was ever done. If we, as a family, had understood AS at that time (and I had been diagnosed) then maybe we would have worked it out, and I am now trying to take on board a lot of information in order to try an improve my ability to relate to friends and loved ones....my daughter in particular, who I still see often. I live in hope that my son and I will connect again one day, and understand each other better.

So I am an older Aspie who has much to share..(possibly too much?)....but I'm also a parent (and probably grandparent one day) who is listening with interest to everyone's experience......I may need to call on it in future.

[Mike_GX101]

I would imagine many parents come on here because they seek help for their child(ren) who are affected by autism. They will have picked up the usual assortment of leaflets on autism and they may believe that autism only affects children. They may be unaware therefore that adults can also have autism.

 

But things are changing I think and too right because today's children will be tomorrow's adults and to my knowledge there remains no cure for autism. This means that parents need to understand what to expect, i.e. 'what comes next'. Therefore I do believe that the contributions made by adults with autism are very important indeed especially on forums such as this one because it helps to paint a better picture of who we are other than the one which is banded around only too often which I feel totally misrepresents us.

Edited December 1, 2012 by Mike_GX101

[raydon]

From my own point of view I think its very individual condition no two ASD people are the same,on top of that(no offense to the adults with ASD) you all grew up in a different era...whilst things are still a struggle it has definatley improved over the years. So for those reasons I dont always "listen" to the adults with ASD.

 

However there have been posts where I think that the adults have made a very valid contribution and I enjoy reading their experiences. It is reassuring to hear others have been through the same. Though I cannot always relate to techniques used or some of the views and opinions....but thats the same as with other parents on here.

 

When I first joined this forum and made my first post, I remember having some feedback along the lines of "with age comes wisdom", and I thought you must be joking.. me wise What works for me won't necessarily work for anyone else, I can offer my thoughts, but wouldn't expect anyone to take what I say too seriously, I am but a lone soul.

 

I have gained alot by reading and posting on this forum, but it is hard work, my energies channel far more freely through my senses and with practical work.

 

I agree with Justine1, we are all incredibly different individuals and at different stages in our lives. Some have illnesses and afflictions associated with autism which have taken over from the underlying causes and to some extent are preventing progress.

 

Others have come through the darkness, and want to help, I'm one of them, I offer my thoughts, which can change as I assimilate more.

 

Whether anyone, parents and carers included, take heed of anything I say is entirely up to them. If I get feedback of any sort, then I will try and respond, if I am ignored then I reckon I've missed the mark.

 

I'm sure there are a lot of people watching on the sidelines gaining comfort by realising that they are not alone in how they feel, but not able at this moment to say anything, I've been there.

 

We are all a mixture of brilliance and darkness, knowledge and ignorance, clarity and confusion, just keep on talking, not all of it falls on deaf ears.

[Lyndalou]

Feeling really fed up about this whole topic at the moment. I don't feel believed, listened to or taken particularly seriously at all. I suppose in the 'virtual' world I have a little more freedom to feel like I can share and perhaps some people might 'get' a bit of what I'm saying. In the 'real' world however, I don't think what I say is taken particularly seriously. If you 'look' normal then you really have to suppress the frustration and put up and shut up. I'm finding that very hard right now. I have a friend who has a disabled child who 'looks' disabled. I can't help but feel quite bitter about the 'pecking order' that is afforded to disability with developmental conditions appearing to fall right at the bottom. I feel like she hoovers up all the sympathy and empathy there is because she has perfected her 'look' of saintly mother-of-a-disabled-child.. I can't do this because it isn't me and I'm not false. I don't want sympathy for my son or for myself for being the mother of a disabled child and an adult with this 'disability'. All I want is a bit of understanding but there is a definite lack of it even for my son so I think I can expect about 0.005 % of available understanding going.

[indiscreet]

If you had to ask me in what area in life do I feel the least empowered and capable as an individual I would without doubt say it is on forums such as this and in the company of young people with ASD, their parents or professionals from within the sector. It is the one environment where I feel my experience, knowledge and skills are completly negated and neautralised and it is why I very rarely post on the forum these days. It is also why I don't get involved in my local AS group which is run by parents as I do not feel welcomed.

 

This needed saying LancsLad, and I admire your frankness.

 

I think one of the problems is that older people who come on boards like this one have learnt to come to terms with the NT world; which doesn't mean we don't still have a great many problems but we've managed to make a life for ourselves. To parents who are struggling with the day-to-day problems of sometimes quite severely autistic children it probably seems that people like us are more or less on a different planet. There's also the widespread belief held by both professionals and others that we are not "really on the spectrum" and have only obtained a diagnosis because the parameters have been altered.

 

 

 

[justine1]

Lancslad and indiscreet you make some good points. I think some(not all) adults have struggled/muddled through the "NT" world and somehow think because of that they are "owed" something and so expect everyone to adjust to them rather than the other way....the irony of that is from previous comments I see that adults think this of children(which can be true) I think this is partly "I did'nt have the opportunities you have" attitude.

 

I could never think that ASD does not excist in adults that would be rather stupid as it is a lifelong condition and my boys will one day be adults with ASD,what I don't believe in is self diagnosis and so if someone on here is giving advice from an ASD point of view when they only have a self dx I really would not pay much attention to that person.

 

I really think the group would be boring and dull without the point of view of the adults with ASD. Occassionally I have seen some adults post in the education discussions and it means alot to hear their side or experiences,I wish they(you) would post more. I don't have to agree with what has been said but its great to read posts.

 

Forgot to add on the subject of being selective,I do not think this is exclusive to parents I have seen many adults picking which posts they want to hear rather than getting a balanced view. I come on here to get a balanced view and I enjoy discussions where there is a bit of a debate because that is the point,again it would be very boring if every parent or every adult was to agree with each other and again we are all so different.

Edited December 3, 2012 by justine1

[sesley]

its always good and helpful to hear or read a adults point of view and of their experiences. you remind us that our children will become adults

and the importance to learn and to undrestand them,to help them have good childhood exeperinces.we are all human and will make mistakes,and you can say what works for you and what did not

[watergirl]

This needed saying LancsLad, and I admire your frankness.

 

I think one of the problems is that older people who come on boards like this one have learnt to come to terms with the NT world; which doesn't mean we don't still have a great many problems but we've managed to make a life for ourselves. To parents who are struggling with the day-to-day problems of sometimes quite severely autistic children it probably seems that people like us are more or less on a different planet. There's also the widespread belief held by both professionals and others that we are not "really on the spectrum" and have only obtained a diagnosis because the parameters have been altered.

 

When I was diagnosed one or two of my friends were disbelieving......they see little snapshots of me coping for short periods and don't realise it is actually quite stressful to socialise, whereas my partner, and people at work (when I was working) who see me more, get to see the symptoms. I asked my psychiatrist about this and now realise it is just a case of having learned as time has gone on......on the triad of impairments my social communication wasn't too bad and my social imagination was actually quite good, but my interaction was poor. Having had time to reflect on this, I realise how much I have changed since childhood,.....so my communication and imagination have improved, although I still struggle in many ways.

I hope that any parents reading this will think positively about their offspring's future.......there are many positive aspects to being AS in my opinion, and overall I'm a happy person

Edited December 3, 2012 by watergirl

[LancsLad]

I watched an interesting programme on TV last night called 'Alien Investigations'. What it highlighted to me is that people come to something with their own preconceptions and if you want to believe something is an alien for example it will be in your mind.

 

To use one example there was a bloated dead carcass washed up on a beach and it did in fact took very strange. But if you come to this from a scientific perspective and say what is the real evidence then we might come to a very logical conclusion. The conclusion in this instance was it was a dead racoon which was half rotten, swollen, add lost bits of flesh etc... a dead racoon which looked very strange I agree. The response of the alien believers was "but it doesn't look like a racoon", but what does a rotten half eaten racoon look like after being in the sea dead for a few weeks? The skeleton says it's a racoon, the DNA says it's a racoon, all the science says it's a racoon, so it must be an alien, because it doesn't look like the ones in the zoos?

 

As an individual I kind of feel like a washed of carcass in a way. I look back at a period of my life say childhood and teenage years and all the issues which I see on the forum from parents were there and a hell of a lot more besides I promise. But I do know that was me, all the scientific evidence says it was me just younger. I then look at a lot of young people in their twenties on the spectrum and the issues they post about and again I go back to a similar period in my life and the issues and a lot more besides were there in my life at that point and again I think back and know the scientific evidence would indicate that was me. I can then move on in a timeline and look over the last 15 years or so and the scientific evidence which is there the very real mental health issues, the suicide attempts the time in secure units lying naked in an empty room locked in and again, yes it was me, my medical records say so. And then I look at myself today and for sure there are issues but I am content and at a very good place in my life. Things come along such as health issues and I can deal with them where many might struggle and I think you are doing alright, the evidence says so, I don't take medication, I don't self harm, I don't need to engage in mental health services, I am self reliant etc...

 

At times I have decided because I have learnt so much because of having to work out how to overcome so much to give back through teaching, coaching sport and being a foster carer with some very difficult cases. Whilst engaged at those levels people never questioned why I was in that position, they looked at the evidence in front of their eyes and came to the conclusion I knew what I was doing.

 

In trying to give back in the same way to the ASD community why is it I feel like an alien, the answer is because that is how people see me. I possibly don't look like them or their kids and so I can't be the same species. In a way when I and others like me got to the scientists and they look at our skeletons and DNA they come to the scientific conclusions and say this is someone with ASD but in another state than what they usually observe. In other words not all racoons look like the ones in the zoo but even though they are dead and washed up they are a racoon nevertheless. The thing I find very frustrating as is the nature of the original post is I am very much not dead or washed up I am more alive and sorted than I have ever been and as such like others I feel I have a lot to offer but when you get treated like an alien because you don't fit the clichéd norm of what something should look like then you have problems.

 

In a way if we transported all the old people off the planet for a few generations at say the age of 40 and then a couple of centuries down the line we transported them back how would we treat them. Would we be able to see they are mainly extensions of ourselves or would we treat them like aliens and be frightened by them and what they might have to offer. Well the scientific truth is no one transported me off the planet, I am not an alien rather there is a simple answer and it is I am someone with the condition who got a bit older and changed a bit, nothing more nothing less.

[Lyndalou]

I could never think that ASD does not excist in adults that would be rather stupid as it is a lifelong condition and my boys will one day be adults with ASD,what I don't believe in is self diagnosis and so if someone on here is giving advice from an ASD point of view when they only have a self dx I really would not pay much attention to that person.

 

Thanks for that Justine. Makes me feel even better today and that's really quite sh1t!

[justine1]

I could never think that ASD does not excist in adults that would be rather stupid as it is a lifelong condition and my boys will one day be adults with ASD,what I don't believe in is self diagnosis and so if someone on here is giving advice from an ASD point of view when they only have a self dx I really would not pay much attention to that person.

 

Thanks for that Justine. Makes me feel even better today and that's really quite sh1t!

 

What part of my comment? Cannot see where I have insulted anyone? If you self dx for any condition and try and give advice on that condition it can lead to problems but thats just my opinion.

[Lyndalou]

'While it is stirring for those of us with AS to see all of this attention being focused in our direction, many of us remain without a formal diagnosis, particularly if we don't have a Y chromosone. Females, from the littlest of girls to the eldest of ladies, continue to fly under the radar of proper diagnosis, eventually landing in worlds where they don't belong. Neuroses, schizophrenia, obsessive-compulsive disorder, personality disorder, oppositional defiant disorder, anxiety issues, social phobia - these are familiar diagnoses for women beyond a certain age who struggle to make sense of the environment, society, relationship rituals and the like. Not that these diagnoses are completely off base. The chances are very good that any mix of those comorbid factors also lay on a lady's genetic code. The problem is many counselors and doctors seem unable to see AS crouching in the middle of the huddle. Why then (many of us ask) does a diagnosis of AS remain a guy's thing? Why do researchers still report that AS affects males three to four times more often than it does females, despite top psychologists in the field, such as Tony Attwood, Judith Gould and Lorna Wing, trying to reframe our thinking from 'AS does not affect females' to 'how can we recognise AS in females?'....more and more Aspie women are joining web forums...A voice here or there might not be heard, but the collective voice of women willing and able to share - wow. That's a loud chorus that can't and won't be ignored...and will serve as an important catalyst to encourage contemporary thinkers to have the realisation that a significant number of females do, in fact, have AS.'

 

Liane Holliday Willey

Foreward to 'Aspergirls'

 

The psychiatrist who covers my area does not believe that AS even exists.

The expert who gave an opinion - that I am autistic 'some of the time' - is a devotee of Simon Baron Cohen

 

Yep, I stand a cat in hells chance of ever receiving a 'formal' diagnosis. Do you think I'm pissed? You bet I am.

Edited December 3, 2012 by Lyndalou

[justine1]

Why you angry at me though? I am merely stating my opinion and I don't think someone who has no formal dx can give an opinion on how it was growing up with ASD when it is hypothetical. I am not saying those who believe they have ASD don't I am saying how can you be 100% certain of that and give advice. If it were me I would'nt feel comfortable. I may comment on here about my own childhood experiences but I almost always say "though I don't have ASD" yet I may very well have,however as there is no evidence I would rather say I don't than I do.

 

As I say its my own opinion.

[Mannify]

Yep, I stand a cat in hells chance of ever receiving a 'formal' diagnosis.

 

It's tough that you are at a geographical disadvantage, Lyndalou. In our locality we seem to be served by some professionals who have a strong interest in ASDs - and that extends to diagnosing women, in particular, as a group who are often overlooked. Also, the extent of the waiting list for the SCD panel meant that my son's diagnosis took about three years, but it would seem to be a matter of months in the case of adults. I don't say this to make you feel worse about your situation, it's just that I can see that it must be very frustrating .

[LancsLad]

I think we have to be careful and apreciate the reality of getting a diagnosis as an adult. I recieved a formal diagnosis after I was told by an undertrained and misplaced mental health professional "that I was far too intelligent to have AS". I wrote to their director of mental health who then offered to pay for a formal diagnostic process to take place.

 

For a lot of adults there simply are not the resources, expertise or experience in their own areas to get a diagnosis. Before I recieved mine I was more than happy to be self diagnosed for the simple reason 'I am the expert in my own life'. I am the person who has lived it and believe me there is not a lot of positiove stuff if anything which comes with self diagnosing. I made that decision after talking with a number of people, reading up on a lot of research and a lot of books on the subject, and most importantly reviewing my own life. In reality I went into about ten times the depth that the formal diagnosis process did.

 

In my opinion if someone has done the same as I did and is well informed and self diagnoses then I am happy to listen to anything they might have to say I would never say i am in a better position because some professional has wrote a few words regarding thier opinion.

 

So I can see exactly what Lyndalou is saying here. Many adults such as myself with a diagnosis feel somewhat ignored and rejected by sections of the broader autistic community at the end of the way I can at least wave a piece of paper in their direction, for many others they can not and it must be so much more difficult.

 

A few months back I had to go for an MRI scan on a couple of prolapsed discs in my lower spine. As part of the process they discovered higher up a large tumour growing on my spine, that I hadn't a clue about because it has caused no real symptoms yet, but it is there. In so many ways I wish I didn't know about it, because there is nothing I can do. Nor are the NHS in a position to do anything about because I don't tick and boxes, and so I know it is there and have to get on with life. In some ways not having a diagnosis is very similar in my experience you know you are carrying something around it is as clear as day as the tummour was on the scan but what do you do about it, you just have to get on with life. If someone said to me I am sure you haven't go a tummour I would find that very hard to deal with, because I know I have. In a similar way i couldn't say to anyone you might not be on the spectrum because how am I to know?

[justine1]

I think we have to be careful and apreciate the reality of getting a diagnosis as an adult. I recieved a formal diagnosis after I was told by an undertrained and misplaced mental health professional "that I was far too intelligent to have AS". I wrote to their director of mental health who then offered to pay for a formal diagnostic process to take place.

 

For a lot of adults there simply are not the resources, expertise or experience in their own areas to get a diagnosis. Before I recieved mine I was more than happy to be self diagnosed for the simple reason 'I am the expert in my own life'. I am the person who has lived it and believe me there is not a lot of positiove stuff if anything which comes with self diagnosing. I made that decision after talking with a number of people, reading up on a lot of research and a lot of books on the subject, and most importantly reviewing my own life. In reality I went into about ten times the depth that the formal diagnosis process did.

 

In my opinion if someone has done the same as I did and is well informed and self diagnoses then I am happy to listen to anything they might have to say I would never say i am in a better position because some professional has wrote a few words regarding thier opinion.

 

So I can see exactly what Lyndalou is saying here. Many adults such as myself with a diagnosis feel somewhat ignored and rejected by sections of the broader autistic community at the end of the way I can at least wave a piece of paper in their direction, for many others they can not and it must be so much more difficult.

 

A few months back I had to go for an MRI scan on a couple of prolapsed discs in my lower spine. As part of the process they discovered higher up a large tumour growing on my spine, that I hadn't a clue about because it has caused no real symptoms yet, but it is there. In so many ways I wish I didn't know about it, because there is nothing I can do. Nor are the NHS in a position to do anything about because I don't tick and boxes, and so I know it is there and have to get on with life. In some ways not having a diagnosis is very similar in my experience you know you are carrying something around it is as clear as day as the tummour was on the scan but what do you do about it, you just have to get on with life. If someone said to me I am sure you haven't go a tummour I would find that very hard to deal with, because I know I have. In a similar way i couldn't say to anyone you might not be on the spectrum because how am I to know?

 

But could you not say that for everyone? Where do you draw the line? The online information and the online tests are sometimes mis-leading and a case of ticking boxes,whilst its similar to being formally diagnosed,the formal process takes many things into account and not just one person's opinion of how they see themeselves.

 

I completely understand the lack of services out there for adults and that some people will never know,but I just don't think you can claim to have ASD if indeed you may not. It goes both ways really. I am always listen/read people's opinions but if you don't have a diagnosis you can have an opinion without stating you do have ASD.

 

If someone claimed to have cancer without a diagnosis we would be horrified but when its ASD or even mental illness such as depression(which many people self dx) we not too bothered but why is that?

Edited December 3, 2012 by justine1

[Mannify]

If someone claimed to have cancer without a diagnosis we would be horrified but when its ASD or even mental illness such as depression(which many people self dx) we not too bothered but why is that?

 

I suppose it depends, to some extent on how well-informed the person is. For example, my sister is a medical student and she hurt her ankle. She was able to self-diagnose her injury accurately based on the knowledge that she most certainly already has. She is not qualified to make such a diagnosis per se, but there is no reason to doubt her conviction, because she has an in depth knowledge of the presentations of her injury, having only recently studied that area of anatomy in her medical degree.

 

Many parents read vast quantities of information regarding ASDs in relation to their children, and have an intimate knowledge of how these present in their children, and where there is a genetic inheritance of certain traits. For some of these, geographical location may ever bar them from diagnosis; but I personally would accept the opinion of a parent who concluded that they, too, have AS, because their intimate day-to-day acquaintance with AS may well put them at an advantage over professionals whose overview is broader but shallower. If the pattern is so strong and compelling that it's impossible to ignore, then what makes it any less AS than diagnosed AS?

[justine1]

I suppose it depends, to some extent on how well-informed the person is. For example, my sister is a medical student and she hurt her ankle. She was able to self-diagnose her injury accurately based on the knowledge that she most certainly already has. She is not qualified to make such a diagnosis per se, but there is no reason to doubt her conviction, because she has an in depth knowledge of the presentations of her injury, having only recently studied that area of anatomy in her medical degree.

 

Many parents read vast quantities of information regarding ASDs in relation to their children, and have an intimate knowledge of how these present in their children, and where there is a genetic inheritance of certain traits. For some of these, geographical location may ever bar them from diagnosis; but I personally would accept the opinion of a parent who concluded that they, too, have AS, because their intimate day-to-day acquaintance with AS may well put them at an advantage over professionals whose overview is broader but shallower. If the pattern is so strong and compelling that it's impossible to ignore, then what makes it any less AS than diagnosed AS?

 

I agree with you. My only problem with it is that we do become so wraped up with everything ASD related when we have kids with ASD,sometimes we walk the shops and spot someone and think "they may have ASD" or even just watching telly. So we may see similarities in the way our kids behave and how we do(or did) however NT parents do the same,they are our offspring of course there will be similarities.

 

I can quite easily tick almost every box for ASD criteria but I don't think I do have ASD,but my perception could be wrong and I could get a dx,whereas someone in the same position may think they do have ASD but actually they don't. Hope that makes sense.

[LancsLad]

Justine I take your points on and what I would go back to is that we are talking about 'conditions' and not something which is a disease with a known cure which is in very limited supply.

 

I used my own example of a tumour because in a way it is seen as a condition at the moment by experts, the evidence is not there to call it a disease and to find out might not be appropriate given where it is. So as a condition I and they accept it for what it is a tumour (condition) and we can describe it in terms of size and location on a report.

 

What I am left with though is working out how I feel about it, and for me that is what conditions are all about what do i feel about it. When we turn conditions into something they are not then I think we start to get into difficult territory. That territory becomes problematic in my mind when we start to question how people feel about themselves, and surely that is their right not ours. In a similar way I would personaly never consider my own AS condition to be a disability, as such I couldn't relate to someone in the paralympics as a competitor with AS, though I train for sport to a high level myself. But if someone feels it is a disability in their life then I guess thats how they feel.

 

The reality is whilst conditions are very much about what we feel about them making conections with symptoms is always going to be problematic. I might have some very severe autistic traits but because of my personality I am a very driven and motivated individual who will find a way past them to achieve what I want out of life. Not everyone will share these personality traits and I appreciate that it will be a very mixed picture out there. One thing that concerns me is that when finacial resources are brought into the picture parents and children get drawn into a bidding culture based on percieved needs and things become clinical and far more driven by professional analysis rather than the emotional needs of the individuals with a condition.

 

In many ways the adult ASD world at the moment in a number of areas namely AS is not like the resorce driven culture at lower age ranges. I think what a lot of this post is about is do people from all areas recognise that fact. This could work both ways do people my age really understand what it is like for kids in their culture. I might say I do for a number of reasons but many might not. In a similar way do parents understand the culture of what it is like to be surrounded by all these online tests, looking back at your own life and 'feeling' you have a condition but not having any real answers other than having to deal with the fact it is there and is now a part of your life.

 

You are right Justine to highlight with kids it is very different but we should recognise that and possibly adapt our thinking a bit if we are parents. To go back to my tumour i really have no problems with it at a personal level. When i found out I was a bit upset and went out for one of the fastest bike training sessions I have ever done and got the issue out of my system. The only time it gets to me is when I look at my son who is 8 and wonder what if in respect to thins thing on my spine because opperating on it would be a nightmare. Kids do make things different on a number of levels I understand that. And the way i deal with my son and my tumour is to say for the time being it is just a 'condition' and with a bit of luck it might remain so for a very long time. When we start to think a condition is something more than it really is we can get into all sorts of difficult areas. It might elicit a bit of sympathy from certain types of people but in the long run it does not serve us well, far better we understand things to be what they are and simply work out how to get the most out of life day by day.

[justine1]

Going back to the OP. I have noticed over the three years I been on here that many adults do feel hard done by and many feel their parnets are to blame some don't even see their parents. Again I am curious to know why this is?

 

If I found out at this age that I do have ASD I would not blame my parents for not seeing it sooner or for the way they pushed me to do well etc. There is that "they don't get me" attitude but again don't we all feel this way at some point in our lives.

[Lyndalou]

I absolutely do not mean to have a go at you Justine. It's just now been 2 years since my son was diagnosed and not much less time than that since all my own puzzle pieces fell into place. For me that is. Not for the professionals who are meant to 'know' what constitutes ASD and what does not. The OT I worked with last year was moved sideways in her job because the psychiatrist she was under did not like her working with people who had (diagnosed) AS as he felt that the diagnosis was invalid. She informed me that everything I said to her and even the way I spoke was indicative of all the people she had previously worked with who had AS. She asked me to provide my opinion on a piece of research she was conducting into how to write questionnaires regarding anxiety measurement in people with AS. I was very happy to do this because I (and she) was certain I had something to contribute as I have had anxiety difficulties, traceable back to the age of 5 or 6.

 

Her psychiatrist boss is very highly respected in his field of expertise. But, can I respect this doctor? No, I cannot. He, for me represents the very worst of the medical profession with his arrogance and narrow mindedness. He also lied about me to another professional.

 

Doctors are not infallible - as my mum would put it, they have 'feet of clay'. This doctor and many like him are up to their necks in clay.

[justine1]

I absolutely do not mean to have a go at you Justine. It's just now been 2 years since my son was diagnosed and not much less time than that since all my own puzzle pieces fell into place. For me that is. Not for the professionals who are meant to 'know' what constitutes ASD and what does not. The OT I worked with last year was moved sideways in her job because the psychiatrist she was under did not like her working with people who had (diagnosed) AS as he felt that the diagnosis was invalid. She informed me that everything I said to her and even the way I spoke was indicative of all the people she had previously worked with who had AS. She asked me to provide my opinion on a piece of research she was conducting into how to write questionnaires regarding anxiety measurement in people with AS. I was very happy to do this because I (and she) was certain I had something to contribute as I have had anxiety difficulties, traceable back to the age of 5 or 6.

 

Her psychiatrist boss is very highly respected in his field of expertise. But, can I respect this doctor? No, I cannot. He, for me represents the very worst of the medical profession with his arrogance and narrow mindedness. He also lied about me to another professional.

 

Doctors are not infallible - as my mum would put it, they have 'feet of clay'. This doctor and many like him are up to their necks in clay.

 

I really do get what you mean and for you(as a mum of a child with ASD) the case may be different. If you take a glance at the "welcome" discussion board you will notice an overwhelming number of paople who are self dx'ing. I just don't think its right. Whilst ASD is a condition and cannot be compared to an illness,I do feel you can compare it to depression. I so often hear people saying "I am depressed" that is how they feel state of min,in the same way as ASD,but how do they know they are truelly depressed. Not all doctors get it right but at least in your case you have tried what gets me is those who accept they have ASD but have never consulted any professional about it.

 

Don't give up if its what you want,if you happy within youself then you may wish to leave things how they are.

[robert7111a]

what I don't believe in is self diagnosis and so if someone on here is giving advice from an ASD point of view when they only have a self dx I really would not pay much attention to that person.

 

 

Well it's reeeally nice to be wanted or listened to eh? I think this is a rather shortsighted comment Justine1

 

I think people who are self-diagnosed and have advice to give have a lot of wisdom to pass down to the younger members and for me at least, getting a formal diagnosis so late in life is now pointless. It's not going to achieve anything; the state or anyone else is not going to help me because I'm not a child/student or an adult living on benefits and I've made my own way in life, not without its difficulties of course.

 

Getting a diagnosis doesn't mean its the right one or that all doctors/psychiatrists are to be believed.

[LancsLad]

Justine I agree many adults do feel hard done by because they are of a generation where they have missed out on support in their own minds. Personally I really don't feel hard done by rather the opposite. My childhood was in some ways brutal in that there was no understanding and it was a case of sink or swim and I just dug in and fought like hell to be the person I am today. In many ways I dread to think what would have happened to me in the current system. I would I suspect be a guinea pig for adults to push around searching for reasons as to why they didn't have to work with me because looking back I was pretty difficult and a bit of an handfull.

 

Looking back does us few favours though, there is a retrospective culture around at the moment. In contemporary terms I was asaulted as a kid by a number of adults, but in a rough working class gritty Northern town at the bottom of the educational ladder what the hell do people expect to have happened.As a kid you just took it and moved on. In a similar way my parents knew nothing about autism why should they. I was born in very difficult circumstances and when I left hospital living conditions were not ideal, but my mum took me to a few clinics as you did every now and again up to a point and then you hit the school system, it was how things were. I can't blame my parents or anyone else for what it was like, nor as Robert says do I expect anything now. It would be nice if my parents understood and read up on the condition but they don't so what can I do but accept that is what they are like.

 

What I do expect though and it is not asking much and it is what this post is about is a little bit of recognition and respect. I think when people get that they are able to move on in their lives far easier. I don't think the initial reaction of adults either formally diagnosed with AS or self diagnosed is to expect loads of things to be there for them. I think a lot of their reaction is simply wanting a little bit of recognition that they have symptoms and difficulties in their lives which may or may not be related to autism so they can move on. When that recognition doesn't come from the autistic community be it other people with the condition, parents , national charities, GP's and other professionals I believe it is at that point they start to get angry and at times stuck in their own lives. If there was a national register and all it allowed people to do diagnosed or self diagnosed was put a dot onto a map where they live many would feel a lot better about themselves, they would feel I am not the only one rather I am a single dot in a big picture of dots. But as far as I am aware no one does that. And the question is if they did how long would it be before some sections are asking for dots of different colours or sizes because that is what this forum feels like at times. It feels as if people are saying my dot is in fact a circle and it is different. Or we might want triangles decause I have a diagnosis of clinical depression and OCD and it goes on and on, because someone is then a star or a something really complex. When I think the reality is very simple people just want to feel they are not the only one feeling as they do and others feel the same way.

[Sa Skimrande]

Well it's reeeally nice to be wanted or listened to eh? I think this is a rather shortsighted comment Justine1

 

I think people who are self-diagnosed and have advice to give have a lot of wisdom to pass down to the younger members and for me at least, getting a formal diagnosis so late in life is now pointless. It's not going to achieve anything; the state or anyone else is not going to help me because I'm not a child/student or an adult living on benefits and I've made my own way in life, not without its difficulties of course.

 

Getting a diagnosis doesn't mean its the right one or that all doctors/psychiatrists are to be believed.

 

Bingo, you got it and how many professionals get it wrong ?

 

Does anyone ever question ?

 

Where diagnosi for ASD without something as conclusive as say a blood test is basically down to a examining person's opinion and how their day to day moods affect their opinion, because the professionals are only human after all, so there open to error.

 

But I cannot help but think there are many professionals justifying their existence with ASD and what does a diagnosis actually do for the afflicted apart from tell them what they can't do in life ?

 

Where late diagnosed adults weren't told this we were just expected to get on with it, sink or swim just like everyone else and so many have swam but others though they may be currently sinking might have swam at some point and so we have something to offer where the professionals are not thinking, but why should they when there is a plentiful supply of children to keep them employed ad finitum, but as ASD kid gets fired out of the child care system at age 18 that is when they discover how useful their molly coddling actually was as it is a rough dog eat dog world out here and something else, there is sod all jobs so it is looking like the mind rot that is benefits for most that don't have a clue.

Edited December 3, 2012 by Sa Skimrande

[trekster]

(snip because i agree with the 1st part)... I fear now that AS is to be taken out of the DSM-V altogether, what is to be become of tomorrow's children?

 

Does this make sense?

 

Not really because autism will still be used as a diagnosis,

 

For example 'gender identity disorder' is being campaigned about by trans folk and their allies to become unmedicalised. Transsexual is the preferred term however transsexuals will still exist even though the old name has changed.

 

AIDS used to be called 'grid' at least in the USA but was renamed, AIDS still exists even though the term grid doesn't.

 

I'm really pleased they are considering getting rid of the term Asperger syndrome it was misleading, confusing and long winded for literature to write 'those affected by autism including those with Asperger syndrome' as the term implied that Asperger syndrome wasn't part of autism. 1 of the reason why the term Aspergers will (hopefully) be taken out is due to authorities refusing services based on the IQ rule. An older version of valuing people (a really ironic term considering at the time Asperger syndrome disqualified you from feeling valued) mentioned "learning disability includes those with Autism but not those with Asperger syndrome".

 

I've heard rumours that the dreaded 'IQ rule' is going to be taken out of learning disability (prefer learning disability to learning difficulty because learning difficulty is confusing and can apply to almost any skill). Did I have a learning difficulty in learning to drive because my 1st theory test included talking in the next room that was distracting me? er no it was a disability that prevented me from filtering out the background noise of people talking and that it was totally unexpected. I got my retake for free because of the conditions I was put under.

 

watergirl what you describe as a coping mechanism is a positive way of dealing with your Asperger diagnosis. The strategy you use is known as 'delayed imitation' ie you observe others and copy what you see are useful ways of communicating with others. As you mention it is difficult and exhausting to do so which is the part that the outside world misses also it hides your Aspergers and can give rise to a 'milder' diagnosis. If you went in without your coping strategies then the diagnosis could be very different. Mine being mislabelled as 'mild' means most of my family deny me any of my autism.

 

justine1 with all due respect many of my autistic friends are struggling to get a diagnosis. If the people you speak of were trolling this forum or others i would understand your point of view but i must strongly disagree with your viewpoint. i attend a retreat conference once per year where many self diagnosed autistics are either coping enough and dont feel they need a diagnosis or are struggling to get a diagnosis. There are parents of autistics trying to get a diagnosis on here as well, are their views less important to you because their child is undiagnosed? i advise anyone who is seeking a diagnosis to avoid putting so in their signature.

 

Back to the original question, there are forums where i feel ignored (so i rarely post there) and forums where i feel valued, respected and listened to at least by most of the group (such as here). My friends who are parents on here are just as valuable to me as my other friends regardless of whether they are autistic or not. i am gradually working out who are allies of mine and who are allies of mine in certain situations not others and who i should steer clear of as they damage my self esteem and mental health. i do object to references about 'getting their own way' from people as i feel it disrespects and completely undermines the diagnosis (which is being unable to understand when to compromise or how).

 

Sa Skimrande, ive never received any post diagnosis help or counselling of any kind even though i have been desperately needing it. ive somehow had to work out what is me and what are my disabilities and also fight long and hard to get my additional disabilities diagnosed. i am still only peer confirmed for my OCD, dyspraxia and C-PTSD and awaiting referral about cervical cranial instability, chiari malformation and POTS. My GP is aware i suspect the above mentioned disabilities but hasn't so far offered me any referral anywhere.

 

Diagnosis of autism is in the Autism strategy for a reason because it is often missed due to either the person appearing they can cope or being lost in the special needs system. My dissertation for my BPhil in Autism (2:1) was about which local authorities have changed service access for Asperger (or so called higher functioning autistics) in the pan avon area. The answer was so upsetting i almost had another breakdown over the results. There was some evidence of change but very little IMHO that's to do with services for accessing social care and the so called 'fair access to care standards'.

 

Diagnosis for me helped me realise that i was right about being different from other people and even better there were others in the same boat that i could connect with, i am now running social groups in the Bristol and Bath areas for ASD folk something i doubt i would be doing without recognising my autism. Also to an extent a diagnosis saved my life i was heading for my breakdown which did happen and 10 years post diagnosis i went gluten and dairy free which has really helped. Dont get me wrong it hasn't been all plain sailing currently im trying to get out of a difficult housing situation as im unable to access my flat and need to start a new life somewhere else.

 

i recently found a lovely mental health group that meets mondays where i can have group therapy about my mental health needs. 1 of the facilitators has an ADHD relative which i feel helps and they accept that i can be autistic and have MH problems at the same time. Also the same group has gotten me back into karaoke and ive accessed some more mainstream events. My social life has really taken off. i found this group myself from doing independent research but took 4 months to pluck up the courage to attend.

[justine1]

Justine I agree many adults do feel hard done by because they are of a generation where they have missed out on support in their own minds. Personally I really don't feel hard done by rather the opposite. My childhood was in some ways brutal in that there was no understanding and it was a case of sink or swim and I just dug in and fought like hell to be the person I am today. In many ways I dread to think what would have happened to me in the current system. I would I suspect be a guinea pig for adults to push around searching for reasons as to why they didn't have to work with me because looking back I was pretty difficult and a bit of an handfull.

 

Looking back does us few favours though, there is a retrospective culture around at the moment. In contemporary terms I was asaulted as a kid by a number of adults, but in a rough working class gritty Northern town at the bottom of the educational ladder what the hell do people expect to have happened.As a kid you just took it and moved on. In a similar way my parents knew nothing about autism why should they. I was born in very difficult circumstances and when I left hospital living conditions were not ideal, but my mum took me to a few clinics as you did every now and again up to a point and then you hit the school system, it was how things were. I can't blame my parents or anyone else for what it was like, nor as Robert says do I expect anything now. It would be nice if my parents understood and read up on the condition but they don't so what can I do but accept that is what they are like.

 

What I do expect though and it is not asking much and it is what this post is about is a little bit of recognition and respect. I think when people get that they are able to move on in their lives far easier. I don't think the initial reaction of adults either formally diagnosed with AS or self diagnosed is to expect loads of things to be there for them. I think a lot of their reaction is simply wanting a little bit of recognition that they have symptoms and difficulties in their lives which may or may not be related to autism so they can move on. When that recognition doesn't come from the autistic community be it other people with the condition, parents , national charities, GP's and other professionals I believe it is at that point they start to get angry and at times stuck in their own lives. If there was a national register and all it allowed people to do diagnosed or self diagnosed was put a dot onto a map where they live many would feel a lot better about themselves, they would feel I am not the only one rather I am a single dot in a big picture of dots. But as far as I am aware no one does that. And the question is if they did how long would it be before some sections are asking for dots of different colours or sizes because that is what this forum feels like at times. It feels as if people are saying my dot is in fact a circle and it is different. Or we might want triangles decause I have a diagnosis of clinical depression and OCD and it goes on and on, because someone is then a star or a something really complex. When I think the reality is very simple people just want to feel they are not the only one feeling as they do and others feel the same way.

Thanks Lancslad that makes alot of sense.

 

As for the other comments let me put it to you like this: You all know me as a mum of two boys with ASD and so when having a discussion you will talk to me as such. If I were to suddenly say "I may have autism" what would you then think? I know the answer but I am sure you will not answer truthfully. I know the answer because I have seen on this forum that when a parent does mention this possibility everyone either goes quiet or tries to persuade them otherwise. Maybe the newer members are different but thats my own observation. Hence why I believe self dx'ing can cause problems. Again though I can say that I do not know anyone from this forum and as such have no evidence that any of you have a dx yet I DO LISTEN (actually read but hey who cares) TO EVERYONE ON HERE. So that answers the OP's question,please read all my posts before judging as I did say how important adult posts are in my very first post!

[darkshine]

Going back to the OP. I have noticed over the three years I been on here that many adults do feel hard done by and many feel their parnets are to blame some don't even see their parents. Again I am curious to know why this is?

 

I think this is an interesting question, I've blamed my parents on here before at times, more so last year than this.

 

When I was 19 I decided to build bridges with them, its taken a very very long time and a lot of effort - at that time AS wasn't anything we'd heard of, and so I was angry at them for not noticing my depression, self-harm or declining mental health.... Later, when I was diagnosed with AS (without seeking a diagnosis) I felt angry again, I felt as though here was some sort of confirmation that they really didn't have a clue. The thing is, in many ways my parents do not have a clue - but - they are my parents and not everyone else's, I don't think all parents are like mine, I don't think every person is the same either.

 

I've spent many many years trying to understand, forgive and accept my parents and I'm not fully there yet, I'm a lot closer than before - for one key reason - many years ago I started to understand they are people too, they made mistakes, they have their flaws, they aren't perfect, but slowly, slowly I find that I feel a little easier about them in some ways - certainly more so than how I felt 5, 10 or 15 years ago. But then I'm stubborn and I refused to just walk away, my relationship with my parents is not perfect, but its sort of ok, its a work in progress in some ways, but in others it is good enough as some sort of relationship exists.

 

As for adults feeling hard done by, I can only speak for myself and I don't think we need the sob story lol. The funny thing is that nothing has changed, I could write the sob story and it all happened to me, all of it, and a lot of the time nobody helped - but I needed to go through that, I needed to be in the position I am today where I could start to look and take responsibility, find some degree of self-awareness, reflection, consideration, understanding of myself and the world. In some ways I've barely started, but it is this change in mindset and the beginnings of these things that are changing how I perceive things out there in the world.

 

I think its all very well for people to stand and shout "help me" but I do also think that we all have to take responsibility, and in the past I did notice that people are a lot more inclined to help, when you show you are willing to help yourself too.

 

And I suspect that when people get angry, bitter, resentful, it is often easier to divert blame onto someone else Justine, and parents are an easy target!

 

Best

 

Darkshine

[justine1]

I think this is an interesting question, I've blamed my parents on here before at times, more so last year than this.

 

When I was 19 I decided to build bridges with them, its taken a very very long time and a lot of effort - at that time AS wasn't anything we'd heard of, and so I was angry at them for not noticing my depression, self-harm or declining mental health.... Later, when I was diagnosed with AS (without seeking a diagnosis) I felt angry again, I felt as though here was some sort of confirmation that they really didn't have a clue. The thing is, in many ways my parents do not have a clue - but - they are my parents and not everyone else's, I don't think all parents are like mine, I don't think every person is the same either.

 

I've spent many many years trying to understand, forgive and accept my parents and I'm not fully there yet, I'm a lot closer than before - for one key reason - many years ago I started to understand they are people too, they made mistakes, they have their flaws, they aren't perfect, but slowly, slowly I find that I feel a little easier about them in some ways - certainly more so than how I felt 5, 10 or 15 years ago. But then I'm stubborn and I refused to just walk away, my relationship with my parents is not perfect, but its sort of ok, its a work in progress in some ways, but in others it is good enough as some sort of relationship exists.

 

As for adults feeling hard done by, I can only speak for myself and I don't think we need the sob story lol. The funny thing is that nothing has changed, I could write the sob story and it all happened to me, all of it, and a lot of the time nobody helped - but I needed to go through that, I needed to be in the position I am today where I could start to look and take responsibility, find some degree of self-awareness, reflection, consideration, understanding of myself and the world. In some ways I've barely started, but it is this change in mindset and the beginnings of these things that are changing how I perceive things out there in the world.

 

I think its all very well for people to stand and shout "help me" but I do also think that we all have to take responsibility, and in the past I did notice that people are a lot more inclined to help, when you show you are willing to help yourself too.

 

And I suspect that when people get angry, bitter, resentful, it is often easier to divert blame onto someone else Justine, and parents are an easy target!

 

Best

 

Darkshine

Thank you Darkshine Enjoyed reading your post.

[darkshine]

Thank you Darkshine Enjoyed reading your post.

 

You're welcome

[raydon]

I could never think that ASD does not excist in adults that would be rather stupid as it is a lifelong condition and my boys will one day be adults with ASD,what I don't believe in is self diagnosis and so if someone on here is giving advice from an ASD point of view when they only have a self dx I really would not pay much attention to that person.

 

Thanks for that Justine. Makes me feel even better today and that's really quite sh1t!

 

I also felt pain when I read that.

 

What part of my comment? Cannot see where I have insulted anyone? If you self dx for any condition and try and give advice on that condition it can lead to problems but thats just my opinion.

 

I feel that I have been written off in a sweeping statement, I am old, and self dx'd. I think Justine1 you have given off a mixed message, In your first post in this topic which I broadly agree with, you said we are all individuals. Now you are categorising the old and self dx'd and devaluing them on mass. If you disagree with or don't like something I say, then I would like to know what it is. I have communication issues and need to know exactly what is meant, I can't fill in those gaps. I don't know what problems you are talking about, I can only recount how I have coped and how I see things, which is patently very different to mainstream thought.

 

But could you not say that for everyone? Where do you draw the line? The online information and the online tests are sometimes mis-leading and a case of ticking boxes,whilst its similar to being formally diagnosed,the formal process takes many things into account and not just one person's opinion of how they see themeselves.

 

Everyone? Again, generalisations.

When I first explored the possibility of AS, I did the online tests, read a great deal about the condition and confided in a family member who is a professor at a medical teaching hospital, who agreed with my thoughts. This is not a formal dx, but I hope it shows that my self declared dx has not been taken lightly.

 

Had I come to this forum and stated (falsely) that I had a formal dx would your understanding or reaction to my posts be any different?

 

As for the other comments let me put it to you like this: You all know me as a mum of two boys with ASD and so when having a discussion you will talk to me as such. If I were to suddenly say "I may have autism" what would you then think? I know the answer but I am sure you will not answer truthfully. I know the answer because I have seen on this forum that when a parent does mention this possibility everyone either goes quiet or tries to persuade them otherwise. Maybe the newer members are different but thats my own observation. Hence why I believe self dx'ing can cause problems. Again though I can say that I do not know anyone from this forum and as such have no evidence that any of you have a dx yet I DO LISTEN (actually read but hey who cares) TO EVERYONE ON HERE. So that answers the OP's question,please read all my posts before judging as I did say how important adult posts are in my very first post!

 

How do you KNOW the answer? Why do you think I won't answer truthfully? Just because some people aren't truthful doesn't in any way affect my response, only the way you perceive it, because you have lumped me into an arbitary group and have attached a weighting to it.

 

If you were to say "I may have autism", I would ask why do you think that? I wouldn't try to judge you.

[trekster]

Totally agree with Raydon here, in my experience of working at the ASD social groups those who have self diagnosed are just as valuable as those who have a formal diagnosis. Also if any of them were pretending to be autistic apart from being really twisted and horrible people they would be outed and chucked out the group. Out of the members that have attended i have made exceptions for those with NVLD because it is similar to autism and those who are ADHD again for the same reason.

 

This is a support forum and claiming that self diagnosed folk are likely to lie is plain insulting. i have seen little evidence that parents feel they are autistic and others try and talk them out of that viewpoint. In fact i feel parents of autistics are more likely to be ASDers themselves rather than less. Has someone attempted to deny your self identifying as autistic Justine1? Did you experience difficulties with getting your children diagnosed? Oh and i had an autistic malice of a father so know full well that autistic bullies do exist.

 

i dont understand the difference between a parent coming on here and expressing they think their kiddo is autistic and an adult coming on here and expressing they identify as autistic? I EXIST campaign was about reminding the government and general public that autism does exist in adulthood. i was one of the speakers at the Bristol launch and from that campaign came about the autism strategy and autism act. This is what we should be doing rather than questioning each others diagnoses working together to build a better life for autistics.

 

My mum is an undiagnosed autistic she is in denial but the teacher relatives, me (with my autism degree) and many others know she is on the spectrum by her behaviour. When i can make allowances for her autism we get on great, when i cant or others cant/wont there are problems. Recently i had to ring the local eye hospital as she has a detached retina shes going in this week. Some of the parents at the NAS parents group claim im not a carer which i find plain insulting. i care for both my mum and my gran, i even have to do parent type things with my brother such as helping him with his university application.

[darkshine]

So, what is it are we worth listening to, or are we just a bunch of grown up children that don't know what we are talking about ?

 

Everyone is leaping on Justine here, and I don't think that is right because it feels like she's saying one thing and some of you are responding as though she personally attacked you, which she didn't, she made a valid point. Justine is entitled to her opinions and views and that's her choice, it doesn't mean they are set in stone, and we all have a choice here - we can read what people say or not, we can all choose how we respond to each other, we have the freedom to decide what advice or comments we take on board and the choice of what to listen to or accept or discuss.

 

I don't really understand what the hoped achievement is here, I tend to find that when I disagree with someone it doesn't help ramming info down their throat or leaping on bandwagons. Seriously, we all have a right to our own views, and I personally don't think that the way people are responding is really doing anything to improve matters, and some of this isn't 'discussion' its 'ranting' and achieves very little.

 

As for the original question, it doesn't matter to me if someone is young or old, male or female, it doesn't matter about their religion, sexuality or culture, it doesn't matter where they are from. I don't care if a person has labels or not, AS, ASD, OCD, BPD, ADHD etc etc, and it doesn't matter to me whether someone has an 'NT' label either. I'd listen to someone flying from Uranus propelled only by a rocket up their ass if they had something worthwhile, considerate, interesting or thoughtful to say, or if they shared their experiences or advice.

 

Just a few thoughts

 

Darkshine

[Sa Skimrande]

I don't have anger towards my parents regards this as really what were they to know, oh yes a suggestion was made back in the 1970's, but I believe my father was quite right is panning that idea through what was available to ASD people back then- the so called special school where people actually degenerated.

 

But nowadays I keep them out of the loop, ignorant as to how things are with me because I have been a big enough burden to them already through failing to meet up with their expectations of me and I am a near middle aged adult I should be dealing with my own stuff myself, but there is something else and that is their belief I don't have something called Asperger's syndrome, it comes over loud and clear, either that or they are clueless about it despite the wealth of education at their fingertips or perhaps they don't want to believe their son could be so defective.

 

But I do have anger, I have it in bucket loads and to where is that anger directed, well the so called caring services that in effect don't care as many who get diagnosed with this thing late in life find the very organisation that is supposed to represent their issues ignores their very existence through not being that holy upon holy of things, a sub eighteen year old. Then there is the medical profession who are about as much use as mammary glands on a bull when it comes to adult Aspergers where they almost proudly say we can't help you because there is no funding for adults with this thing and in my experience, an actual GP that denies that adults can have Aspergers Syndrome, where he obviously thinks it's a child hood problem that goes away when age eighteen is attained, or it never existed in the first place.

 

I am angry, because I believe I am being made out to be a charlatan and an attention seeker and so is best ignored or put down where at all possible.

 

And I posted this thread in a moment of anger as a warning to parents what is coming their children's way, for children I believe are far less prepared for adult hood now than what us late diagnosed were and it's not been easy, hence the depressive issues, but if I can do but one thing useful, I hope I can help others by warning of them of what may come as there isn't any help for adult aspies, I know that from bitter experience and where anyone might feel disadvantaged by whatever in society, in today's society ASD is an extra disadvantage as there is not exactly a lot of employment opportunities out there, and where there is no income, there is no hope and mental illness ensues and one then becomes excrement on the shoe of society for learning difficulties or just bone idle, it is irrelevant one is just filth for being a benefit scrounger and that is all there is to it and yes, we feel it, it is that palpable and ultimately detrimental to health and well being

Edited December 4, 2012 by Sa Skimrande

[raydon]

Everyone is leaping on Justine here, and I don't think that is right because it feels like she's saying one thing and some of you are responding as though she personally attacked you, which she didn't, she made a valid point. Justine is entitled to her opinions and views and that's her choice, it doesn't mean they are set in stone, and we all have a choice here - we can read what people say or not, we can all choose how we respond to each other, we have the freedom to decide what advice or comments we take on board and the choice of what to listen to or accept or discuss.

 

I don't really understand what the hoped achievement is here, I tend to find that when I disagree with someone it doesn't help ramming info down their throat or leaping on bandwagons. Seriously, we all have a right to our own views, and I personally don't think that the way people are responding is really doing anything to improve matters, and some of this isn't 'discussion' its 'ranting' and achieves very little.

 

As for the original question, it doesn't matter to me if someone is young or old, male or female, it doesn't matter about their religion, sexuality or culture, it doesn't matter where they are from. I don't care if a person has labels or not, AS, ASD, OCD, BPD, ADHD etc etc, and it doesn't matter to me whether someone has an 'NT' label either. I'd listen to someone flying from Uranus propelled only by a rocket up their ass if they had something worthwhile, considerate, interesting or thoughtful to say, or if they shared their experiences or advice.

 

Just a few thoughts

 

Darkshine

 

I'm not attacking Justine1, I was trying to answer her question and give some reasons.