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      Depression, Mental Health and Crisis Support   06/04/2017

      Depression, Mental Health and Crisis Support   Depression and other mental health difficulties are common amongst people on the autistic spectrum and their carers.   People who are affected by general mental health difficulties are encouraged to receive and share information, support and advice with other forum members, though it is important to point out that this exchange of information is generally based on personal experience and opinions, and is not a substitute for professional medical help.   There is a list of sources of mental health support here: <a href="http://www.asd-forum.org.uk/forum/index.php?showtopic=18801" target="_blank">Mental Health Resources link</a>   People may experience a more serious crisis with their mental health and need urgent medical assistance and advice. However well intentioned, this is not an area of support that the forum can or should be attempting to offer and we would urge members who are feeling at risk of self-harm or suicide to contact either their own GP/health centre, or if out of hours contact NHS Direct on 0845 4647 or to call emergency services 999.   We want to reassure members that they have our full support in offering and seeking advice and information on general mental health issues. Members asking for information in order to help a person in their care are seeking to empower both themselves and those they represent, and we would naturally welcome any such dialogue on the forum.   However, any posts which are deemed to contain inference of personal intent to self-harm and/or suicide will be removed from the forum and that person will be contacted via the pm system with advice on where to seek appropriate help.   In addition to the post being removed, if a forum member is deemed to indicate an immediate risk to themselves, and are unable to be contacted via the pm system, the moderating team will take steps to ensure that person's safety. This may involve breaking previous confidentiality agreements and/or contacting the emergency services on that person's behalf.   Sometimes posts referring to self-harm do not indicate an immediate risk, but they may contain material which others find inappropriate or distressing. This type of post will also be removed from the public forum at the moderator's/administrator's discretion, considering the forum user base as a whole.   If any member receives a PM indicating an immediate risk and is not in a position (or does not want) to intervene, they should forward the PM to the moderating team, who will deal with the disclosure in accordance with the above guidelines.   We trust all members will appreciate the reasoning behind these guidelines, and our intention to urge any member struggling with suicidal feelings to seek and receive approproiate support from trained and experienced professional resources.   The forum guidelines have been updated to reflect the above.   Regards,   The mod/admin team
anewman

What's in a "diagnosis"? (self-diagnosis)

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anewman   

This post is sort of a reply to replies made to a previous post of mine at http://www.asd-forum.org.uk/forum/index.php?/topic/25824-am-i-doing-this-right-re-unemployment/page__view__findpost__p__301277 in which I suggested someone looking for employment at the jobcentre should say "I have Asperger Syndrome" as opposed to "I have suspected Asperger Syndrome" in order to access the correct support and help they need to get a job, and hopefully to help stay in that job once they get one. I wanted to start a new thread so as not to detract from the OP's request for assistance regarding employment, as I am sure this subject has the potential to be a rather heated one and generate lots of debate.

 

Quite rightly and justly people who have already received a diagnosis of Asperger Syndrome would not want to see the label being misused. Eventually if it is misused then this may detract some benefit from people who do have the condition, or even promote misunderstanding of those who do have the condition (but NT's seem to manage misunderstanding the condition without too much prompting anyway). Afterall noone would want someone without problems to "muscle-in" on any support out there for people with Aspergers (not withstanding the fact that such support is unlikely to be suitable for them anyway, the only reason I can think someone without the condition would want to say they have it is for benefits if they were lazy). However, I think there is too much credence placed on the label and it tends to be considered by those who have received it as sacrosanct - and wrongly so in my opinion.

 

Under some circumstances self-diagnosis is easy as well as important. For example, people can identify when they have a cold and know they should not go to the Doctors as it wastes the Doctors time because they can do nothing. Asperger Syndrome is clearly more complex than a cold, but many people are bullied at school, feel they are social outcasts, have few or no friends, find difficulty getting jobs and socialising with other people - they search on the net and no doubt find out about Asperger Syndrome. They read on, they read the personal experiences of people with the condition, and think "yes this seems to explain me and my difficulties, I think I may have this condition." What I cannot understand is why many people who have been diagnosed would seek to say they could not use a diagnostic label to their own benefit?

 

I think it is wrong that people may have extreme difficulties with day-to-day life and that they are made to wait a long time for a "diagnosis". I am sure none of us would disagree here. If you are not able to claim to have problems when you do that makes things all the more difficult and challenging. Why is it not fraud that it is so difficult to get a diagnosis? It is my point of view that the diagnosis or label itself is not important, but the difficulties a person faces, and the help they can receive - not receiving a diagnosis presents as many barriers as having the condition itself does. In my view it is wrong that people with difficulties are considered normal until such a time as they receive a diagnosis, and up until which point they are expected to languish without any support or help. To be completely honest I do not believe even having a label presents much benefit at present due to how NT's misunderstand Autistic Spectrum conditions. There are after-all a range of other labels that could explain AS tendencies and behaviours. For example Social Anxiety disorder is one. My belief is that Social Anxiety disorder in and of itself rarely, if ever, occurs independently and that most cases are due to either Autistic conditions, or Post Traumatic Stress Syndrome in relation to social activities. Whether we label a person as having Social Anxiety Disorder, or Asperger Syndrome, very much affects how they are perceived by other people, and the types of treatment and support they receive. Even though outwardly to the layman NT they may appear to be the same.

 

I was once briefly told of a case where someone, most likely in their clinical opinion, had a personality disorder. However, the parents thought the diagnosis of Asperger Syndrome would be nicer because it sort of implies you are not responsible for any anti-social behaviour whereas "personality disorder" has more negative connotations. Apparently they "pushed" for the Aspergers diagnosis and it was given, presumably they looked into the diagnostic criteria and possibly bent/twisted the truth. So even clinicians are dishing out false diagnoses at the whim of parents. Why would you happily accept this person into the ranks of Asperger Syndrome sufferers and not someone who meets all the clinical criteria but has not had a doctor say he thinks that person does have this condition? Even many mental health professionals still know little about Asperger Syndrome.

 

Regarding my own diagnosis, in my case I was at first misdiagnosed as Schizophrenic due in part to my AS behaviours. Now do we say for the rest of my entire life that I have Schizophrenia just because the label was once incorrectly given to me? To me the fact a Doctor can say something and it be considered right and not retractable is very destructive if the diagnosis is wrong, particularly with something like Schizophrenia where the indicated treatment regimen is anti-psychotic drugs. The label actually stuck for a very long time. What if someone DOES have Aspergers but for whatever reason when they go to seek diagnosis they are told "you do not have AS"? I doubt I have ever met anyone with sufficient knowledge to diagnose me "by the book". I think my diagnosis somehow transformed from "difficulties relating to Asperger Syndrome" to "Asperger Syndrome". Plus I suspect my mother's own difficulties with communication would have meant any diagnostic requirements for my mother to provide information could not have fully been met. AS was eventually the accepted label by mental health professionals and what my GP wrote on my sick note. I never got a diagnostic report. I do not think the label has any special meaning other than how it helps other people understand me, and if there are substantial difficulties in the way people understand me that is when I mention the label.

 

Do not be too hung up on labels. The important things are that people have difficulties, and those difficulties need understanding, addressing, and support on the basis of those problems. A diagnostic label is one route into helping people understand but even still autistic spectrum conditions are largely misunderstood by the general NT population. There is nothing special about a doctor's "professional" opinion and even professional opinions can be, and from my perspective all too often are, incorrect. I agree with Aspies for freedom that Aspies believing people can not be allowed to self-identify as AS is bigotry.

 

I hope that one day the brain scan that can detect Autistic Spectrum Conditions is feasible for use, then all we have to do is scan a brain and there's a diagnosis and we can put an end to this rambling about diagnosis which serves no benefit other than for the people who have already been diagnosed.

 

One related thing people may be interested in is that often deaf people were hospitalised on secure psychiatric wards and diagnosed as Schizophrenic because of their difficulties communicating with the world due to their deafness. They had no real mental health problems. There is the case of Geoffrey Abbott who was hospitalised for 22 years 1 minute in here http://www.youtube.com/watch?gl=US&hl=uk&v=Rvgg9ZjX9DI and http://www.youtube.com/watch?gl=US&hl=uk&v=pI2UNbd7lxY (4.40 in if you want to skip). His diagnosis did not help him so please stop going on about how important a diagnosis is and how wonderful it is once you get one. If at one point doctors could not tell the difference between a simple physical-world disability like deafness, and a serious psychotic disorder that's a sad indictment of these "professionals". Diagnoses can be as destructive as they are helpful and placing too much faith in them is what makes them destructive. See also http://www.ncbi.nlm.nih.gov/pubmed/7247640

Edited by anewman

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KezT   

no-one has claimed that a dx is an end in itself or the passport to all necessary support & assistance. What the posters, myself included said that you can not claim to specific disablity on the basis of "Ithink it therefore it is". It totally belittles and discredits the disability and has no real bearing on your personal individual circumstances.

 

Yes there have been incorrect dx's made throughout history and still happening today. One hopes that the medical profession is learning from their mistakes, and few deaf people are sectioned nowadays - along with the single mothers and post-natal depression who were also routinely locked up for insanity in days gone by :rolleyes: Where a DX is proven or acknowledged incorrect by the medical profession, then of course, that person no longer has that condition. Equally, where an individual states their dx is wrong, that has to be considered carefully by the medical profession, but not taken as true by the layman - we all know that (for example) schizoprenics (sp?) often think they are better either because they have been taking medication, or sometimes because they have gone so far into their fantasy world that they don't recognise their delusions any more. It doesn't mean they ARE better - ust because they have decided the original dx was wrong!

 

If we get to the stage where we allow everyone to self dx via the internet nothing will have any meaning any more. I was bullied at school and had difficulty making friends. Sometimes I feel quite down about my life and sometimes I'm really happy with it. I have really bad hadaches occasionaly, especially if stressed. I'm tired all the time and find it hard to motivate bmyself to change my lifestyle for the better. According to the internet, I am clinically depressed, bi-polar, ASD and probably have a brain tumour, cancer or Leukemia. :unsure::blink:

 

However, I can not say I have any of thse things unless I get a dx from a medical profssional! I can say that I am under ivestigation, or that I have symptoms of..., or that I need assistance with.... but to say I have cancer when I almost certainly don't is really quite a revolting idea IMO.

 

As has been said numerous times on here, you DO NOT NEED A DX to access any of the diability assistance available - it helps professional understand what the issues are in one easy word (although not very much with ASDs) but is totally irrelevant to what disabilities affect your day to day life. Howver, if you self dx anything and request help on the basis of that dx, you are comitting a fraudulant act and the DWP will almost certainly take a very dim view of that!

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Mumble   

Kez - :thumbs::notworthy:. Couldn't say it better myself, so I won't try!

 

I have really bad headaches occasionally, especially if stressed. I'm tired all the time and find it hard to motivate myself to change my lifestyle for the better.

Have you considered that you might have student-syndrome? Sounds like you have all the classic symptoms! :lol: :lol:

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KezT   

Kez - :thumbs::notworthy:. Couldn't say it better myself, so I won't try!

 

 

Have you considered that you might have student-syndrome? Sounds like you have all the classic symptoms! :lol: :lol:

 

LOL - actually I think I have tired mummy syndrome :devil:

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bid   

Thank you Kez! :notworthy:

 

Anewman: you appear particularly contemptuous of diagnosis, and yet you advocate that people use a fictitious dx of AS according to their personal preferences!

 

I would also add, that in my opinion it raises questions about someone's psychology if they self-dx and then present that as a proper dx.

 

Self-diagnosis will continue to be no diagnosis as far as health, SS, DWP, etc, are concerned, and rightly so in my opinion. Autism is a serious, neurological developmental disorder and should not be trivialised in this way

 

Bid :(

Edited by bid

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justine1   

I agree with Kez T and Bid :thumbs::notworthy:

 

Also I personally do not see my boys dx's as "labels" the reality is for my 7 year old he did not get support without a dx even though in theory he should have as it was clear he was not coping.As soon as he had his dx everything changed for the better. I never knew either of my boys had ASD,I did read up on things,in this case for my 4 yr old who had speech problems,however because he had recurring tonsilities and was born a few weeks early I put it down to that.

 

I never had the time to search for symptoms online,only done so after my 7 yr old got his dx.I to was told by a GP that he has AS before we went for a full assessment I did not take this as a dx just a suggestion. I only fully accepted it when I got a full report,its hard reading but it is also a comfort to know I havent done anything wrong as his mum.At the age of 6 my son was also eager to know why he felt the way he did and I would have felt awful if he went through life never knowing for sure,always just assuming he had a condition.

 

As a student nurse I cannot fault the medical professionals,yes they make mistakes they are human,but it is not so common for such mistakes to be made. I also think the diagnostic process may have its faults but is there for a good reason.Not every person who suspects ASD will get a diagnosis,surely that does not mean the professionals are wrong :unsure:

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i was i right mess before i knew i had so many negative experiences in my childhood especialli in education system due to not knowing it was such confusing lost little girl in playground on her own i clearly remember being in my own world wondering why i didn't have no friends to play was something i did wrong! did no one want me? wasn't i good enough! i became questioning myself every min of everyday and believing i was 'nothing' and no one to anyone i felt no one really cared what happened to me as in their eyes i was seen as nuisance trouble maker class clown attention seeker that's the labels that followed me around stuck to me like glue and lowered dented my self esteem so much until i had nothing left it had eaten away at it! i always felt 'different' couldn't explain why or hows of the situations i was 'forced' into out of my control nothing made sense around me felt everything 'out of focus' 'slipping out my fingers' and felt powerless useless stupid pathetic etc so finding out learning discovering the unhidden truths behind eveything made all become 'clear'in my head and my world opened up i was everywhere before i knew i knew felt wrong from others my age yes takes a while to accept A.S into your life don't think i ever fully will to be honest with you! but i think made my past more understandable and problems that have arose from misunderstandings and confusions not on my fault but because A.S has 'got in the way' blocked me out! i think knowing gives guidance encouragement some peace and gives you some determation and power not be beaten down by label but fight back and make A.S life best you can but knowing has emptied foggy past and head

 

even my nan she asking questions about A.S to my mum as wanted to know more was interested i suppose and supported me alot after knowing but i was very troubled not knowing caused alot friction throughout my life and explainations i could have given if was given the chance no diagnosis no wasn't possible not EXCUSES no! this just explaining difficulties of what struggle with find hard etc i know everyone entitled to own personal opinion /POV i totally stand with the others i disagree and now hope i can help others going through same lost feeling empty pain and heartache feeling out of control etc save getting point i was at! the 'label' 'diagnosis' was struggle to come to terms with and find information about but i believe made me stronger saved me literally! brings answers to missing jigsaw

 

you made me angry annoyed by what you have said really!

 

XKLX

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A.S not knowing living life in constant limbo all time drives mad crazy ... also feels like been living a 'lie' all your life and how is that right or fair to carry on living in that way! it awful position to be in! i was discovered my 'accident' as had MH issues which weren't adding up on there onw still unanswered questions so was assessed and they knew straight away without adding up scores from tests they did just talking me and my mum about past birth history what struggles/difficulties faced with everyday A.S then mentioned i was scared alone as child not knowing i used to cry so much my head used to hurt thinking about 'everything' going on! trying find an answer myself! no child should ever feel that isolated have no friends no be invited to parties all i had was 2 dinnerladies who used keep me company talk to me i feel if i had diagnosis earlier on more support MAY have been recieved! so tiring 'fighting' unknown with your eyes 'closed' to what going on locked in trapped in your own world! feeling no one can reach you help you before too late i reached that point many a time! so frustrating not knowing you blame yourself become angry and get 'blame' everything gets put onto your shoulders when too young understand what really going on or what the true affects are until later on!

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Tally   

I do think there has to be a place for self-diagnosis. Given how hard it can be to get assessed, you are not likely to seek formal assessment unless you already strongly believed you had Asperger's.

 

A formal diagnosis rarely leads to formal support, because there simply isn't any available. Most of what I have learned about Asperger's and the new skills I have developed as a result have happened through my own research and work. The formal diagnosis offered me assurance that I was on the right track, but it has not been much of a factor in allowing me to read books, pick up hints and tips from other autistic adults, or try out new techniques for learning new skills. I could have done all those things (and did begin to) without a formal diagnosis.

 

Saying you have a formal diagnosis if you don't is a separate matter. That would by lying and might even be fraudulent. But listing your difficulties and even saying that they might be caused by Asperger's is not a lie. It just might be difficult to obtain medical evidence if you have not had a formal assessment.

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baddad   

Hi anewman/all -

not a comment on your own situation at all, but another issue of self diagnosis in the wider context, is that for many people the 'idea' of autism frees them from self-repsonsibility. This doesn't apply exclusively to those self-diagnosing - many autistic people and/or their parents/carers are equally happy to justify every negative of their lives or personality with an autistic label - but I do think it is a bigger issue among those who claim a diagnosis or 'traits' informally and then cherry pick bits and bobs from the various autistic stereotypes as and when it suits them.

My own experience has been that it is more often the most able - whether 'officially' diagnosed or self diagnosed - who are most likely to say, effectively, 'it's not me, it's my autism', and try to bully others (either directly, or indirectly by assuming the role of 'victim') into accommodating them with absolutely no expectation of compromise or adjustment on their part. More profoundly autistic people might be equally uncompromising, but more often this is because they genuinely don't 'get' what is being asked of them rather than because they have intellectualised it and decided that the usual rules don't apply to them, or because when they have intellectualised it they have weighed up the pros and cons and accepted the implications, good and bad, of their behaviour.

 

Trying to think of an example, that old cliche of 'I don't do social' comes to mind. Many autistic people don't, and will wherever possible try to remain in their comfort zone socially, whatever that might be. They will often put a huge amount of time and effort into developing self-help strategies so they can cope better when they are out of their comfort zone...

Other autistic people may be completely socially 'unaware', and while their environment can have a huge impact on their behaviour they are responding to it on a largely instinctive (i.e. 'it is crowded') rather than social ('there is a large crowd of people and I don't know them/they are looking at me') level. Other's may just not 'do social', being largely content to be on their own or perhaps interacting some of the time with a very small network of friends/family. The kind of people I have a problem with (and the group, sadly, that many 'self-diagnosed' Aspergers seem to fall into) are the ones who say 'Ooooh, I can seem really rude, but it's just my autism', or 'Oh, I've got a vile temper - but it's just my autism'... There are many variations on that theme, but effectively it usually has more to do with people wanting things their way or no way and controlling others to ensure they get it. And sorry, but that isn't autism - or at least it isn't only autism...

 

As I said at the top of this post, this in no way should be taken as a direct comment on your own (or anybody else's) situation, and the control factors I've highlighted can apply to 'officially' autistic people too. But in a society where the term 'Aspergers' is being increasingly casually applied to describe and (more importantly) justify just about any personal, social or behavioural negative I think home diagnosis and cherry-picked 'symptoms' can only be a bad thing all round.

 

L&P

 

BD

Edited by baddad

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I agree with that - autism (or any other ND condition) shouldn't be used as an excuse for bad behaviour, or as an excuse not to make the effort to make yourself acceptable in the NT world. If you are going to explain aspects of your behaviour as autism or whatever, it should be done apologetically, so as to make it clear you're not just making excuses for being rude / unsociable etc. In that situation, whether you're diagnosed or not doesn't matter.

 

Coming back to the original point of this post, some years ago I was able to get Incapacity Benefit without any diagnoses by explaining what problems I had that made it difficult for me to find work, but now that IB has been replaced with ESA this would be more difficult now. I stopped claiming IB when I became a student, but this year I will have to return to the benefits system if I can't find work.

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baddad   

I agree with that - autism (or any other ND condition) shouldn't be used as an excuse for bad behaviour, or as an excuse not to make the effort to make yourself acceptable in the NT world. If you are going to explain aspects of your behaviour as autism or whatever, it should be done apologetically, so as to make it clear you're not just making excuses for being rude / unsociable etc. In that situation, whether you're diagnosed or not doesn't matter.

 

 

Hi eccentric/all -

not sure if I've read your post incorrectly, but just in case I wanted to clarify that I was in no way suggesting that autistic people should have to make themselves acceptable in an NT world or apologise for being autistic. The scenario I was commenting on was when self diagnosed 'mildly' Asperger's people or autistic/AS people who chose to portray themselves that way use their diagnosis/home diagnosis to defend behaviours they can manage successfully.

As an example, my son jumps around like a mad thing when playing difficult levels of computer games. I prompt him to try to stop, and he puts a huge amount of effort into trying to stop, and slowly he is starting to get some control over this 'stim'. But ultimately he and I both know it is symptomatic of his condition, so controlling it is a long term goal, if indeed it is something he can/will be able to control at all. On the other hand, things like barging to the front of a queue or deliberate rudeness are things he can control most of the time, and when he chooses not to that decision is usually reached through the same kind of social processing that non-autistic people who jump queues or who are deliberately rude use. That is not symptomatic of his condition, and he knows I will be unsympathetic to suggestions that it is. Sadly, that's not the case for all autistic people or their carers, and certainly among the 'home diagnosed' AS as a free pass for rudeness or inconsiderate behaviour often seems to be the norm.

 

Oh - for those who would say 'what's wrong with him jumping around?' the answer is 'not much', and that's another reason why it's very much a 'back-burner' issue. That said, the noise (he's nearly six foot tall now and quite solidly built), the wear and tear to my carpet, the burnt out game controllers, the possibility of broken limbs/furniture etc all make it worthwhile to try to stop if possible. I'll lay money he gets there at some point, too, because that's the kind of kid he is :)

 

L&P

 

BD :D

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munty13   

I think we have to be careful when we point the finger at people, and claim that they are "putting things on", and not controlling their behaviours to get their own way. This can be a bone of contention between me and my wife - especially when I fail to follow a conversation. She will think me rude, and playing on my Aspergers, when I am genuinely exhausted trying to keep up with her.

 

From her perspective, there is an idea that if I am aware of my behaviours, then I must be able to change it at the drop of a hat. Frustratingly for us both, this is simply not possible, because Asperger's (at least as I see it) is a real physical problem in the brain/central nervous system. My listening skills are improving, but this has been something of a long, slow process.

 

 

That said, there's little doubt that diagnosis, whether self-realised or otherwise, can be of enormous benefit to someone with Aspergers. In a world that can appear so bizarre, and terrifying, a diagnosis of Aspergers can offer a person some sort of understanding as to why it appears that way. The relief I felt when I found out about the existence of Aspergers was immense. It was nice to know that I was not simply "crazy" and that there was a physical, mechanical explanation as to why I percieved the world differently from most other people.

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baddad   

I think we have to be careful when we point the finger at people, and claim that they are "putting things on", and not controlling their behaviours to get their own way. This can be a bone of contention between me and my wife - especially when I fail to follow a conversation. She will think me rude, and playing on my Aspergers, when I am genuinely exhausted trying to keep up with her.

 

 

Hi munty -

 

No 'finger pointing', just genuine concerns about manipulative people being manipulative - just as much a reality among the autistic (and self diagnosed autistic)community as elsewhere in society, and probably more so because precoceptions about, and patronising responses to, the diagnosis make it more viable. Please don't take what is a general observation personally, but by the same token don't reject the logic because it may not personally apply.

 

L&P

 

BD

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munty13   

Don't worry baddad, I won't take it (too!) personally. I too make the assumption that it is possible for people with Aspergers to be just as manipulative as the rest of the population - after all, people with Aspergers are only human.

 

To be fair, I should imagine that a NT also finds it difficult to change something about their behaviour which they don't like (smoking, procrastination, etc) If change really was that easy, the world would be a different place wouldn't it? Given the opportunity, the first thing I would do is change my perception of the world - which should help ease things along quite nicely.

Edited by munty13

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bid   

Tally: I can see a place for 'self-awareness' rather than 'self-diagnosis'. Of course there is nothing wrong with someone recognising difficulties they face or traits they may exhibit that might be on the autistic spectrum. For some adults it's enough to read around, and maybe find strategies that might help and so on, or they may decide to explore things further by seeking an assessment.

 

But this is very, very different from 'deciding' you have AS and then telling people, including things like the DWP, that you 'have' AS. I have to confess that I really struggle to understand why anyone would do this...at the very least they risk looking a fool when they are inevitably asked where they were diagnosed and have to reply that they haven't actually been seen by anyone. The other very, very important thing about an assessment is that it rules out other conditions that may often mimic aspects of the autistic spectrum. One has to ask why medics 'waste' years and years of training if it's possible to self-dx using online tests! I've also been struggling to think of any other serious conditions where there is this worrying prevalence for self-dx.

 

Eccentric: I don't know if I am interpreting your comments correctly...I have certainly always pushed myself out of my comfort zone. If I did what I really want to, I wouldn't work and I wouldn't socialise including my extended family. However, I'm pretty bl00dy-minded, so usually refuse to 'give in' as it feels to me (I'm just talking about how I see myself, not saying that anyone else is 'giving in' to their difficulties :unsure: ), and for the majority of times I'm really glad I've pushed myself. For example, I have had some huge personal struggles with my job, but the sense of achievement I have from working and doing well at my job far outweighs this.

 

As for 'apologising'...if by this you mean not being aggressive about 'my rights' as someone with AS, I would agree. I have occasionally asked for 'reasonable adjustments', mainly at work, but I have tried to do so in a pleasant, positive way, rather than in a combative manner. So far I have never had any problems, although it may be because I work in a special school. However, I still think that as a rule in life you get farther by being pleasant (it's perfectly possible to be pleasant without being a push-over! ;) ). I tried to be the same when I was my son's advocate when he was young...I'm probably the only parent in the history of the world who sent her LA SEN officer a 'thank you' card, and the SENCO flowers, when we finally got his Statement! :lol::hypno::wacko:

 

Bid :)

Edited by bid

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Tally   
Tally: I can see a place for 'self-awareness' rather than 'self-diagnosis'. Of course there is nothing wrong with someone recognising difficulties they face or traits they may exhibit that might be on the autistic spectrum. For some adults it's enough to read around, and maybe find strategies that might help and so on, or they may decide to explore things further by seeking an assessment.

I think this is what I meant really.

If working out that you have some autistic traits and strategies intended for autistic people are helpful for you, then that can only be a good thing.

For me, realising that my communication style is not "normal" or what people are expecting has been a huge help. Before I knew about AS I thought that people hated me and it really put me off communicating at all. Since learning about AS I have started to realise that it's not all about me being horrible, or about others picking on me. Although it's something that's coming from me, it's not something I am doing deliberately and it's not due to be being a horrible person. It's taken that step for me to even realise I needed to find better ways to come across, start doing that, have better communications, and very gradually build up my confidence. The diagnosis has given this problem a name, but learning that it existed at all was the main thing that has helped.

 

But this is very, very different from 'deciding' you have AS and then telling people, including things like the DWP, that you 'have' AS . . .

I said that in my post too :)

But I do think it might be appropriate to share your difficulties with individuals when you have a personal relationship, including the suggestion that they might be caused by AS.

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bid   

I think this is what I meant really.

If working out that you have some autistic traits and strategies intended for autistic people are helpful for you, then that can only be a good thing.

For me, realising that my communication style is not "normal" or what people are expecting has been a huge help. Before I knew about AS I thought that people hated me and it really put me off communicating at all. Since learning about AS I have started to realise that it's not all about me being horrible, or about others picking on me. Although it's something that's coming from me, it's not something I am doing deliberately and it's not due to be being a horrible person. It's taken that step for me to even realise I needed to find better ways to come across, start doing that, have better communications, and very gradually build up my confidence. The diagnosis has given this problem a name, but learning that it existed at all was the main thing that has helped.

 

I completely agree with your points...in a way, any 'reasonable adjustment' almost needs to be two-way, I think.

 

I said that in my post too :)

But I do think it might be appropriate to share your difficulties with individuals when you have a personal relationship, including the suggestion that they might be caused by AS.

 

Sorry Tally...I was sort of 'thinking out loud' around your original point :wacko:

 

Bid :)

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westie   

Hi eccentric/all -

As an example, my son jumps around like a mad thing when playing difficult levels of computer games. I prompt him to try to stop, and he puts a huge amount of effort into trying to stop, and slowly he is starting to get some control over this 'stim'. But ultimately he and I both know it is symptomatic of his condition, so controlling it is a long term goal, if indeed it is something he can/will be able to control at all. Oh - for those who would say 'what's wrong with him jumping around?' the answer is 'not much', and that's another reason why it's very much a 'back-burner' issue. That said, the noise (he's nearly six foot tall now and quite solidly built), the wear and tear to my carpet, the burnt out game controllers, the possibility of broken limbs/furniture etc all make it worthwhile to try to stop if possible. I'll lay money he gets there at some point, too, because that's the kind of kid he is :)

 

L&P

 

BD :D

My youngest jumps around all the time when on a computer/ WII game, and cant seem to stop for long, even when reminded (where he gets his energy from I do not know!) luckily he is only 5 and quite slim, wonder if he will be doing it when he is as old as yr lad?! :o

 

It does take time to change behaviours/ responses (to whatever, and whether you have a diangosis of ASD or no diagnosis but some behaviour is becoming an issue for your or others) but I think it is worth putting time and effort in as it will benefit them (or you!)in the long run.

Sometimes knowing what to do to change it (a particular behaviour or response) is the issue, and that is when help and input and support is needed. Its not always easy to either find a solution, or persist in keeping on with it and that is when you most need support, I feel, to keep at it even when it seems not to be working. Or to recognise that you have given it long enough and perhaps its time to try something else!

 

sorry this bit is perhaps not directly relevant to your post but I will keep it here anyway save posting again!

Edited by westie

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bid   

I think it is relevant Westie :)

 

A dx of anything can either be taken as a challenge to enable that person/oneself to achieve maximum potential, or it can be seen as a sort of 'get out of jail free' card to excuse everything. Of course, we all make mistakes and get things wrong, but I do think that what is important is the underlying motivation.

 

Not for one minute am I saying that people on the autistic spectrum should be 'normalised' in the way of certain 'cures', neither is being autistic any less valid than being NT. However, autism undoubtedly brings with it certain disabling/isolating/restrictive difficulties, and my personal opinion is that we should be aiming for as much independence as is possible given each individual's situation.

 

Bid :)

Edited by bid

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Tally   
any 'reasonable adjustment' almost needs to be two-way, I think.

Yes, I think so too.

 

The kinds of situations I was talking about were dealing with strangers, asking a question in a shop, etc, where I can't realistically expect them to make any adjustments at all. In those situations, it all has to come from me.

With people like work colleagues or friends, you might be able to expect them to show some understanding, but it's still really me that has to do most of the work.

It's only really with people you know very well, such as a best friend, family (that you live with) or partner where both parties can really try to meet in the middle.

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westie   

 

Not for one minute am I saying that people on the autistic spectrum should be 'normalised' in the way of certain 'cures', neither is being autistic any less valid than being NT. However, autism undoubtedly brings with it certain disabling/isolating/restrictive difficulties, and my personal opinion is that we should be aiming for as much independence as is possible given each individual's situation.

 

Bid :)

 

that makes sense to me

Edited by westie

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munty13   
A dx of anything can either be taken as a challenge to enable that person/oneself to achieve maximum potential, or it can be seen as a sort of 'get out of jail free' card to excuse everything. Of course, we all make mistakes and get things wrong, but I do think that what is important is the underlying motivation.

 

This reminds me of some thoughts I had following a little research into how the most primitive, but largely misunderstood, area of the brain - the reptilian brain or cerrebellum - works. I know myself that I lack a social imagination, and when I think back throughout my life and how I have applied the same routine to a social encounter - regardless of how much I wanted/needed to change it - I found that it always seemed to surprise me when I got the same dire feedback from different people time after time after time. It's doing the same thing over and over again, but hoping for a different result (some might say that this is the very definition of madness!) A different result never, never came. That didn't stop me trying though - if only because I lacked any other option.

 

Right now, I do my best to avoid socialising completely. Thinking about it, this is probably something of a lack-lustre option, but at least it's better than the humiliation of repeatedly smashing my head against a wall.

 

I guess I need to work on more options.

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baddad   

This reminds me of some thoughts I had following a little research into how the most primitive, but largely misunderstood, area of the brain - the reptilian brain or cerrebellum - works. I know myself that I lack a social imagination, and when I think back throughout my life and how I have applied the same routine to a social encounter - regardless of how much I wanted/needed to change it - I found that it always seemed to surprise me when I got the same dire feedback from different people time after time after time. It's doing the same thing over and over again, but hoping for a different result (some might say that this is the very definition of madness!) A different result never, never came. That didn't stop me trying though - if only because I lacked any other option.

 

Right now, I do my best to avoid socialising completely. Thinking about it, this is probably something of a lack-lustre option, but at least it's better than the humiliation of repeatedly smashing my head against a wall.

 

I guess I need to work on more options.

 

Hi Munty -

I seem to remember in an earlier post that you have four kids? Obviously all of your 'social' hasn't been banging your head against a wall then? :lol:

I think the idea of giving up socialising if you don't enjoy it is a perfectly sensible and natural one - as i said in my first post:

 

Trying to think of an example, that old cliche of 'I don't do social' comes to mind. Many autistic people don't, and will wherever possible try to remain in their comfort zone socially, whatever that might be. They will often put a huge amount of time and effort into developing self-help strategies so they can cope better when they are out of their comfort zone...

Other [more profoundly] autistic people may be completely socially 'unaware', and while their environment can have a huge impact on their behaviour they are responding to it on a largely instinctive (i.e. 'it is crowded') rather than social ('there is a large crowd of people and I don't know them/they are looking at me') level. Other's may just not 'do social', being largely content to be on their own or perhaps interacting some of the time with a very small network of friends/family.

 

As bid said, a huge amount depends on the underlying motivation, and it's not always as simple as the motivator being 'autism'. You've reached a decision that you feel works for you, so any 'loss' should be offset by what you feel you've gained. If you don't feel your decision has been a 'gain' then it was, whether autism was a factor in it or not, the 'wrong' decision.

 

L&P

 

BD

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munty13   

I seem to get on well with kids. I like kids. There's something that I once heard which was attributed to Spike Milligan and said something along the lines of: a child does not grow into an adult, but rather, the adult appears and the child disappears. I find this statement very profound. Adults, I guess, are hurt children, installed with a vast array of (exhausting) defense mechanisms.

 

If I'm honest. If I am really honest, my oldest daughter is nearly 6, and I am starting to feel something "missing" between us. I can do silly. I can also do strict and grumpy. I just seem to lack "normal" conversation. I sometimes worry that I may have failed her in some way - that I've not BEEN enough. I wish I could give her more "normal". Maybe I'm just saying something that every parent on the planet tells themselves now and again.

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bid   

If I'm honest. If I am really honest, my oldest daughter is nearly 6, and I am starting to feel something "missing" between us. I can do silly. I can also do strict and grumpy. I just seem to lack "normal" conversation. I sometimes worry that I may have failed her in some way - that I've not BEEN enough. I wish I could give her more "normal". Maybe I'm just saying something that every parent on the planet tells themselves now and again.

 

Oh Munty >:D<<'> I have 4 children too, and this is something I talked at length about during my assessment for AS.

 

The specialist said that having spoken to both myself and my husband he thought that what we brought to our parenting complemented each other. And now, a few years on from my dx, I listen to what my children actually say about me (they are 21, 15, 13 and 9) and I have more confidence in my ability as a mum...I still have some wobbles, but on the whole I look at my kids and think we (I) have done a good job!

 

I would aslo add that by worrying about this you are being a reflective parent, which is far, far better than the thousands of parents who never give a second's thought to their parenting!

 

Bid >:D<<'> >:D<<'>

Edited by bid

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munty13   
I would aslo add that by worrying about this you are being a reflective parent, which is far, far better than the thousands of parents who never give a second's thought to their parenting!

 

Hey, thanks bid. But I think every parent worries about their parenting - maybe for different reasons though. I've noticed there is a real difference in how I worry about raising my kids. When I worry, am I worrying more about how people percieve my parenting, or is it a genuine concern about my child's welfare? Ideally, dismissing the former and sticking to the latter, is probably going to be more beneficial to the child, in the present and future.

Edited by munty13

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A new brain scan has been discovered to diagnose Autism.

The computer can tell small differences in the brain so tell if someone is on the Autistic spectrum.

I had brain scans in the eighties and they could not find any differences in my brain.

When the brain scan is fully in use we do not know if people would count as Autistic if they behave like an Autistic person but it does not show on the machine.

That might mean they would not obtain the help they need.

There is information about the brain scan being discovered last year on the web so anyone can find it with a google search engine.

Is the brain scan a good thing?

David Shamash.

I am including it in the subject of diagnoses but I do not know if it should be in a new discussion.

I have nothing to do with the Norfolk Broads as I live in London.

I do not know how to remover Norfolk Broads.

Edited by David Shamash

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coolblue   

A new brain scan has been discovered to diagnose Autism.

The computer can tell small differences in the brain so tell if someone is on the Autistic spectrum.

 

What this research actually found was that there was a correlation between someone's autistic symptoms and their brain scan. This is hardly a surprise. The brain works on a 'use it or lose it' principle, so if someone had been showing autistic behaviours from an early age their brain scan would reflect this.

 

I had brain scans in the eighties and they could not find any differences in my brain.

 

What you had was a scan to see if there was any brain abnormality or damage that could have caused autistic characteristics. Not the same thing as a diagnosis of autism.

 

When the brain scan is fully in use we do not know if people would count as Autistic if they behave like an Autistic person but it does not show on the machine.

That might mean they would not obtain the help they need.

 

Quite.

 

I have nothing to do with the Norfolk Broads as I live in London.

I do not know how to remover Norfolk Broads.

 

The place name is to do with how many posts you've made, not where you live. Ignore it.

 

cb

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Yes what I had over twenty years ago was not to find out if I was Autistic.

One in 87 at St Georges and another one in 1989 at Wellington Hospital both paid for by the National Health.

It was to find out if I was brain damaged as I fell out of a pram when I was a baby.

After that I had more brain scans at the Maudsley for research to find out if Autistic people's brains are different so may be it contributed to the new brain scan.

 

I think it could happen that a brain scan might find that someone was not Autistic although the person was behaving as though he was.

I should think in the reverse that a brain scan might find a person Autistic when his behaviour was not Autistic.

It is less likely as they are only likely to brain scan people who behave as though they were Autistic.

David Shamash Thanks for your reply.

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I've not read all this - if I did my, rather fragile, head would explode. I don't know what's wrong with me (only that I'm not NT... :rolleyes: ). I've been told, by a professional and by two acquaintances (the first of whom has an elder son who has LFA, and a younger with AS; and the second whose elder son has ADHD and younger, AS) that I'm definitely spectrum and, although 2 of the opinions are lay, they do have experience in recognising the signs...

 

I would never DREAM of applying a label to myself just for the sake of it - do I have AS, I've not the foggiest... but I've been told it's the most likely thing...

 

This is me, I'm just me. I don't know who I am, or what I am, I'm just me.

 

Does that make sense...? :unsure:

 

Sarah xxx

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cmuir   

Hi

 

I can appreciate what you're saying about the value of self-diagnosis (or in my words, 'realisation'). My son was formally diagnosed 5 years ago, but prior to that, I recall sitting up night after night reading lots of websites and books looking for some pointers as to why my son was so challenging. The words are indescribable when (after a lot of research), I read a book that could have been written by me. A whole range of emotions - relief at possibly finding answers, etc etc. I must say that I feel strongly that labels are extremely important - for one thing, it led to doors being opened to services which would otherwise have been inaccessible, school suddenly taken things seriously, R getting a bit more understanding, etc etc. I genuinely feel that labelling is a good thing (even if it does mean an email or a letter) and in my son's case, saw the benefits (i.e. support).

 

Caroline.

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Well I was not self diagnosed.

In family therapy in 1990 my father asked if I had been more strictly brought up whether I would have turned out better.

The family therapist said it had nothing to do with up bringing and explained that I had Asperger Syndrome.

I was not in the room and she explained it to my Parents as it was a terrible secret.

My Father was a great believer in discipline and said that they over did the cane before the war but they should not have abollished the cane completely.

He even got caned for talking after lights out at boarding school in the 1930s.

I will never forget this conversation as he died shortly after that meeting aged eighty-five in 2006.

Learning that I had Asperger Syndrome meant he stopped blaming my Mother for the way I turned out.

 

My Doctor told me in 09 that the only record about Autism on me was the Psychiatrist in 1976 who visited us aged nineteen saying that I had mild Autism which is the equivalent of Asperger today and he did not have records about when I was nine.

When I was nine in 1966 a Psychiatrist wanted to send me tc a special school for Autistic children I am pleased that I did not go there. That Psychiatrist did not explain why he thought I was Autistic.

I was not happy at the private schools but I liked the Primiary School I was at from nine till eleven.

More replies please on the brain scan.

David Shamash.

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coolblue   

There were a couple of discussions about the brain scan when the paper was first published. Here's one of them;

 

http://www.asd-forum.org.uk/forum/Index.php?/topic/24940-scan-could-diagnose-autism-in-15-minutes/page__p__293242__hl__%2Bbrain+%2Bscan__fromsearch__1#entry293242

 

cb

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