Just wondering.....

[indiscreet]

Nobody has made the point that self-diagnosis for adults shouldn't be necessary. It should be possible to obtain a diagnosis in the way one would with other mental and physical illnesses but it's all a question of cost - not just the cost to the NHS of obtaining a dx but the amount of financial and other support that might then be expected to follow a positive diagnosis.

 

It seems crazy to me that parents of a child with autism aren't automatically tested, not just for their benefit but to give researchers more information about the way it occurs in families.

 

I personally don't agree with self-diagnosis; it's much too easy to be subjective when filling in a questionnaire. Joining a forum to ask questions and learn is one thing but to give opinions and advice when you don 't even know if you have the syndrome is another.

[LancsLad]

Along with Darkshine I would say Justine has come on here as a parent and given her opinion which she is entitled to. Looking through the responses it doesn't surprise me that no other parents have come on to answer the posts initial questions so what does that say?

 

We can all play the game of getting a fishing rod and hanging a bit of bait out there hoping someone will come along take it and then we can see what happens next.

 

If parents of ASD kids are not now going to take this particular bait I might offer the following thoughts in trying to move things on as Darkshine has.

 

To all the older adults (I am not putting an age on this but not those in their early twenties) who like me have recieved a later diagnosis in life has recieving a diagnosis significantly changed the way you think and if so do you think this is a permanment feature of your life or do you think it is something that will change again in future.

 

Speaking for myself my diagnosis self and formal all withing the space of four months made me wobble for about another four or six as I came to terms with things. I then realised I was the same person I ever was only more informed and surely that was better, wasn't it? As a result I went back to working on being the same me just a bit better if I could achieve that. At that point I came to this forum because I felt I had something positive to offer, though I am still a work in progress.

 

I make this point because if people have a track record of being angry and frustrated throughout an extended adult life and a diagnosis comes along in whatever form what has really changed? And if the answer is nothing, is it not a case you are simply an angry and frustrated individual just a bit better informed, and surely that is better isn't it? I want to say I am not passing judgement on other peoples feelings here, people have a right to feel what they want to and it is so wrong to deny that. What I will say is if those feelings are not constructive in someones life then the answer is to work on those feelings and not build scafolded constructs to support them.

 

And I think this is where some adults of around my age are going possibly in a poor direction post diagnosis. They are using the information they have gained through the process to build scafolding to reinforce elements in their lives which 'may' not be healthy. I say that because I was tempted to do the same. At one point I felt like blaming parents, schools, medical professionals and had to say towards what aim, to fit and cage myself in as a victim of all of this? I had to come to a concious decision with myself to say don't do it, it's not healthy for you!

 

To go back to the origonal post I think it is true many parents and health professionals simply do not see us older ASD individuals as a valuable resource and that is a shame. But that might continue if they see us as animals caged in by scafolding structures ready to bite at them should they try and get too close. We choose whether to cage ourselves or not. And we need to recognise that we are at a point in time where because of information being readily available there are a lot of adults out there many self diagnosed, but we have a responsibility. If we want to be taken seriously we need to get over our own diagnositic issues and there are many and be prepared to offer our experiences in an open, balanced, for sure honest but importantly genuine way for society to take on board or ignore if that is how they see fit. I have real concerns that what is happening because of the strong culture of parents and children and resource driven services there will emerge a counter culture which if anything might be a lot, lot worse and something bitter and twisted. If that culture is there parents will as is their nature become protective and young adults with the condition will be fearfull of what is to follow.

 

In my experience there is nothing to fear as you age with an autistic spectum condition however you want to term it. As for all individuals there is massive potential for personal growth but it takes time and a lot of effort to achieve that growth and it might not come in the same format for some as it does for others. For sure my own AS has been a challenge for me but nothing to worry or be frightened about once I accepted myself for being the person I am and took responsibility for myself. For sure there are lots of things people say and do which I could take as being hurtful or I could say they might not quite understand and leave it at that. Now that is easy for me because I know I am not perfect and there are lots of things I don't quite understand so I am sure it is the same for others. When it comes to this forum I think that needs to be the basis of healthy conversation the acceptance that there are things about ourselves and others we don't quite understand, if we want to find out a bit more about those things then we have to be tolerant and accepting of whatever anyone says or thinks otherwise we will stand in silence and brood to ourselves.

[Sa Skimrande]

Now I understand what a professional diagnosis meant for me, it gave reason to my madness and I can accept that and of others if they think it will help them if they have had similar difficulties then by all means go for it, but it has to be said to all external services they don't care that you exist, so if it is one is seeking for the help, don't because it's not there.

[Mannify]

It seems crazy to me that parents of a child with autism aren't automatically tested, not just for their benefit but to give researchers more information about the way it occurs in families.

 

Where I am discussion of family history and contingent offer of referral should AS seem to be present occurs as a post-diagnosis process, along with offer of a place on an ASD-specific parenting course. It seems, though, that that is not the case everywhere, which is why I feel frustrated on behalf of others who are in localities where it seems much harder to get a listening ear.

 

Looking through the responses it doesn't surprise me that no other parents have come on to answer the posts initial questions so what does that say?

 

I'm a parent, Lancslad, and from my very first day posting on this forum my life and my understanding of the people I love (both children and adults) who are on the spectrum has been enriched by the many insightful comments on here. I can immediately think of a specific example where the comments of adults on here made me stick to my guns against the advice of a teacher (it was about shoes - nothing earth-shattering - but I felt the advice given was worthy and it helped). I don't necessarily post on every thread, but I read and I learn, and it helps. Surely everyone has a lot to gain from approaching this forum open-mindedly? Since each presentation of ASD is totally unique, and each situation in which a person's life is affected by it is different, whether diagnosed or not, we surely have a lot to gain from each other.

 

So I'll reiterate, as a parent, since that is the subject of the OP, I have gained a lot from the insights of both adults on the spectrum and other parents.

 

I mean, I really feel that I owe a lot to regular posters on here, whatever their situation, who take the time to share and support - it's added to our lives (mine and my family's) in ways that aren't readily measured.

Edited December 4, 2012 by Mannify

[LancsLad]

I undertand what you are saying Mannify. I guess what I mean is I suspect there are lots of parents who can't see any autistic traits in themselves and possibly there are none to be truthful because genetic conditions can skip generations, they don't often seem to engage with the older members of the forum who are here because they have a diagnosis of one form or the other.

 

I am being honest but for example I can't remeber a teacher or a GP or a social worker or somone from what we might call a totally NT position coming on and engaging. The only thing we ever see like that are people wanting individuals to fill in research for their own final year degree submissions.

 

In a way if people want to develop better lines of communication they are the people we should target and not parents who are often in the middle of things they have a child with strong symptoms and a diagnosis and can see traits in themselves as Justine has highlighted. And if forums like this are the incubators which help to develop and grow a culture what are the aims of that culture in respect to what it wants to achive in the longrun or is the forum just a warm place where bad feelings are left to fester and grow?

[Mannify]

I undertand what you are saying Mannify. I guess what I mean is I suspect there are lots of parents who can't see any autistic traits in themselves and possibly there are none to be truthful because genetic conditions can skip generations, they don't often seem to engage with the older members of the forum who are here because they have a diagnosis of one form or the other.

 

I personally came on this forum as someone who doesn't have AS, and I thought it would mainly be parents talking about ed stuff, so when I realised, almost immediately, that it was a mix of both parents of children with ASDs and adults on the spectrum, I was struck by what a powerful source of insight (not information, insight ) this forum could be. To be truly honest, I was quite giddily happy to be in contact with such a broad range of people, united as they are on this forum. I continue to value the insights of the contributors here.

 

In a way, it's neither here nor there that the psychologist who headed my son's diagnostic team said that in her opinion I have AS (I had begum to wonder for literally a fortnight before that), because I'm still not sure exactly what bearing that has on my life. On reflection, it's very clear that I have traits (no idea how I didn't spot it), but I'm still unsure how diagnose-able they can be. I don't know, but I do relate to a lot on this forum, I really do. What was significant about my long discussion with the psychologist, however, is that I really respected her not on account of her almost complete doctorate in Autism, but because her sister has AS, and she herself identifies traits within herself. When she spoke to me she understood, really understood, what I was talking about. I wouldn't disregard the knowledge of professionals who are not on the spectrum, but clearly individuals and professionals who are on the spectrum are such a valuable resource for us all, parents included, that it's a resource that should not be ignored. With regard to my experience here on the forum, parents and diagnosed and undiagnosed adults have all contributed valuably, and I suppose I tend not to see this forum as a fetid pool of ill-will, but as I said before, as a valuable source of insight. Nothing's perfect, though, and it can be hard for us all to resist the inclination to categorise and dismiss, I guess. But if anyone thinks that their contributions on here are un-valued, I can confirm that they are not and that they do help.

Edited December 4, 2012 by Mannify

[justine1]

Nobody has made the point that self-diagnosis for adults shouldn't be necessary. It should be possible to obtain a diagnosis in the way one would with other mental and physical illnesses but it's all a question of cost - not just the cost to the NHS of obtaining a dx but the amount of financial and other support that might then be expected to follow a positive diagnosis.

 

It seems crazy to me that parents of a child with autism aren't automatically tested, not just for their benefit but to give researchers more information about the way it occurs in families.

 

I personally don't agree with self-diagnosis; it's much too easy to be subjective when filling in a questionnaire. Joining a forum to ask questions and learn is one thing but to give opinions and advice when you don 't even know if you have the syndrome is another.

 

Exactly my thoughts indiscreet.

 

I have not said people should not question whether they may have ASD or not(again people really should read every comment!) Of course before my son was dx'd it was suggested that he has ASD by a GP,that was not a dx but I joined this forum anyway to learn more as I knew nothing about it. I did not ONCE comment as a parent of an ASD child,merely stating this is what was suggested to me,until after he was formally dx'd which was almost 4 months after I joined. Oh and no I did'nt have difficulties in getting either of my sons' a dx.

 

An example of my point is if I were to put a post on here asking for advice about one of my sons' people will comment with "when I was that age..." (or similar) so if you have a dx then fine your point is valid but if you do not how would I know if its relevant? how do I know you are not NT? I am not saying don't post I am saying that one could state "I don't have ASD but...." then its not giving a false assumption that you do have ASD. I do the same with my 4 year old,he has no dx but I often see certain things he does that other kids with asd do. So if someone comments I may say "my NT son does that,though he may have ASD..." or similar. So people can take my comment with a pinch of salt.

[sesley]

i have used this forum for a while now,just because i want to learn all i can about autism .My son was diagnosed at 4 he is 13 now and i have learned a lot I admit i have a lot of his charcteristics.Ther is so much to learn about autism and i want to learn all i can,including inputs from adults,so that i can nuture my 13 year old into a confident adult,who can do anything he wants with his life,and have him rememeber the good things he has achieved.

Edited December 4, 2012 by sesley

[Lyndalou]

I don't know how to post a link to this blog but this is worth looking at:

 

www.aspergersgirls.wordpress.com

 

Scroll down and you will come to 'Most Popular Posts'

 

At the top of the list is a description by the author of 10 'traits' women with Aspergers generally possess (the author does state that this list is based on a compilation of different women's experience and her own and does not claim that these traits are an exact representation of every woman with Aspergers).

 

Under this is a list of the 10 Myths relating to how women with Aspergers present (same caveat as above applies).

Edited December 4, 2012 by Lyndalou

[Mike_GX101]

When I was growing up I was driven by the desire to be independent; it got me up in the mornings because it gave me a sense of purpose in life.

 

What I am learning increasingly day by day however is that there is a general perception that all adults with an ASD are unable to be independent and cannot therefore fend for themselves. And sadly I fear many young people with an ASD grow up with a learned sense that because of their ASD they will never be able to be truly independent.

 

I am only grateful in retrospect that I was late in learning of my ASD and was therefore pushed earlier in life because I got to learn through experience and through making mistakes. Youngsters with official diagnoses of autism do not appear to get that opportunity and that is a shame in that it denies them of that initial spark which makes them want to become independent and self-sustaining.

[trekster]

i have used this forum for a while now,just because i want to learn all i can about autism .My son was diagnosed at 4 he is 13 now and i have learned a lot I admit i have a lot of his characteristics.Ther is so much to learn about autism and i want to learn all i can,including inputs from adults,so that i can nurture my 13 year old into a confident adult,who can do anything he wants with his life,and have him remember the good things he has achieved.

 

This is also my experience ie so much to learn about autism and i really admire your stand on the situation and wish my family would do the same. They claim they have no time to read up on autism and at the same time wont accept how my autism and other disabilities affect me! ive even had my nephew kept away from me 'in case i get angry and hit him' when the opposite is true, if anything i would protect him from the slanging matches his 'gran' and my 'sis' have in front of him.

 

Another thing i have experienced is difficulties with getting diagnosed (18 month waiting list and trying to kill myself the majority of the time during that wait). In the pan Avon area there is a year long waiting list for 1 ASD service and many reluctant GPs in the others. A friend of mine had to wait until she was in her late 50s to get diagnosed and she is very obviously autistic also a parent to 2 autistics who are 'ignored or inelligible' for services. i've also come into contact with 'more able' people who find coping mechanisms so are unable to get diagnosed. i had a meeting today and was told how able i was, i asked my support worker why and he told me 'your presentation hides your disability' i do speaker and campaigning type work because im fed up with being dismissed as not needing services. it was really insulting and i was even told 'we help old ladies', the person was very taken aback by my saying that younger people shouldnt miss out because of you helping old ladies.

 

The social groups i co run accept self diagnosed and diagnosed people, those aren't the catchment criterion. The criterion we have at the social groups are "avoidance of any type of discrimination", people are given 2nd chances as a reasonable adjustment for their ASD. Also some disabilities are similar to autism eg NVLD but they were probably being assessed for autism but got an NVLD diagnosis instead. The AQ test is easy to fake and also has many flaws eg 'a museum or a party' i like both provided the sensory overload is controlled. i could be in a museum with a buzzing sound caused by security hurting my ears or at a party with the bass box adjusted so it felt louder but didn't hurt my ears. Also museums IME tend to echo the sounds of people talking.

 

'Whether a point is relevant' would depend on how the response was worded. We are aware that many ASD folk have sensory issues, so an undiagnosed autistic talking about hypersensitive hearing has just a valid point as a diagnosed autistic. Does the person sound like they are speaking as an autistic? ie does their viewpoint tally in with other literature you have read about autism or symptoms of autism. Is there experience possible to find via google (apart from here)?

 

As for the 'independence' desire it is impossible to be 100% independent because you will always need doctors, police and various other people helping you, we will always depend on others for support whether that be support we all get or support from home help type people as well. As they say 'no one is an island'. My experience of semi independence resulted in abusive neighbours, isolation, loneliness, unable to leave my property mentally or physically and eventually burning myself with chicken noodle soup and going to hospital. That was with 13 hours of home help per week. i was unable to communicate my needs and wishes to my support people or anyone else until things went drastically wrong because SS let me down by refusing to do a relevant through needs assessment when my physical needs became much worse.

 

Also ive been given opportunities to try 'independence' before such as University for 2.5 years where i got my DipHE in Diet and Health (and nearly had a breakdown as a result). Now im stuck trying to find a suitable housing situation my only response was 'somewhere i feel safe' to 'where would you like to live?' im scared of specifying certain places in case im accused of being over fussy or told that area is oversubscribed.

[Mike_GX101]

As for the 'independence' desire it is impossible to be 100% independent because you will always need doctors, police and various other people helping you, we will always depend on others for support whether that be support we all get or support from home help type people as well. As they say 'no one is an island'. My experience of semi independence resulted in abusive neighbours, isolation, loneliness, unable to leave my property mentally or physically and eventually burning myself with chicken noodle soup and going to hospital. That was with 13 hours of home help per week. i was unable to communicate my needs and wishes to my support people or anyone else until things went drastically wrong because SS let me down by refusing to do a relevant through needs assessment when my physical needs became much worse.

 

You say you had abusive neighbours and yet you do not explain what made them so and you certainly offer nothing to validate your perception of them being that.

 

You say you were isolated, lonely and unable to leave your property. Many people feel like that from time to time. It isn't just some people with an ASD who feel like that.

 

You say you burned yourself with chicken noodle soup and went to hospital. But you do not quantify a sufficient enough link for that to be associated with any of the above.

 

Yes you are right though there will be some people on the 'spectrum' who do require more care. But some of us are more than capable of being independent within the society in which we live and even prefer it that way.

[sesley]

each circumstance is different,some cope vey well independently and others need extra support.You are right we all need outside help,like the services. the important thing is children with autism now are given the ability through being taught to according to their abilitys,if they want to eventually go out ino the world and live independentadult lives safetly and confidently if they choose to do so and are able.

Edited December 5, 2012 by sesley

[indiscreet]

... 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.....

 

This is is a support forum and claiming that self diagnosed folk are likely to lie is plain insulting.

 

I've never thought that those who have self-diagnosed are consciously lying but I do think that one can't be completely objective about oneself. It needs a professional with experience of the condition to make the diagnosis as happens with other mental an physical conditions. It is, after all, quite normal to be convinced our symptoms mean we have a particular disease only to find out (with relief) we were worrying unnecessarily so this could quite easily be the case with someone who has self-diagnosed.

 

Also, self-diagnosis affects the creditibility of autism/AS in the eyes of the general public who too often view it as "flavour of the month".

Edited December 5, 2012 by indiscreet

[Lyndalou]

I've never thought that those who have self-diagnosed are consciously lying but I do think that one can't be completely objective about oneself. It needs a professional with experience of the condition to make the diagnosis as happens with other mental an physical conditions. It is, after all, quite normal to be convinced our symptoms mean we have a particular disease only to find out (with relief) we were worrying unnecessarily so this could quite easily be the case with someone who has self-diagnosed.

 

Also, self-diagnosis affects the creditibility of autism/AS in the eyes of the general public who too often view it as "flavour of the month".

 

All I can say is 'Ain't you the lucky one to have found these amazingly receptive and clued up professionals who see further than the end of their own noses?'. Do you know, my child is diagnosed and no-one gives much of a monkeys about him. All I get is 'He's not that bad' and 'Hasn't he come on' and people don't really think he's THAT autistic because he says 'Please' and 'Thank you' and doesn't flip out at the supermarket. He's chatty and friendly so it doesn't matter that his chatter consists of an awful lot of echolia and he is completely clueless about half the things that are said to him.

 

I remember with clarity my mother constantly saying 'Will you just stop copying everything I say' and that she found it in turns infuriating and very funny that I needed things repeated to me over and over. I still deal with the same problems now that I see in my own child but I get very little support (apart from a wonderful teacher) and all the support I have I've had to fight for.

 

I research autism to help my child and myself every single day. No-one else is going to do that for me. I have read numerous articles, blogs and current research and ran a Support Group for a short while where I was peer-recognised as having AS. I had the OT who worked with me for a number of months when I was in a very bad place after finding out about AS and subsequently being disbelieved, saying to me that I am a 'Pioneer' because she recognised my autism when I was just brushed aside by other professionals 'with experience of the condition'. I don't want to be a 'Pioneer' - I want to be recognised, valued, supported and understood.

 

I've come on this forum for about a year and a half and initially was picked to pieces because I have self-diagnosed and have NO CHOICE but to be. Yes, there are those who perhaps are completely unable to be objective. I've met autistics who have talked to me at a volume loud enough to be heard a mile away but had no notion their voice was loud. There are those who have simply no idea how they come over to others and I'm not saying I'm not one of them but often I'm painfully aware that I'm being avoided or that there has been a change in attitude towards me and I can spend a lot of time trying to figure out exactly what I did or said 'wrong'.

 

For 20+ years I've been trying to better my life and come to terms with various difficulties which I have which are all part of the diagnostic criteria for an ASD. What it would appear is that I have done TOO MUCH WORK, so much in fact that I am not considered to have the condition. The way I am is measured against the expectations of what professionals and parents expect their child or teenager to be able to achieve. I studied abroad when I was 19. This was a big tick AGAINST me having an ASD because the expectations are that kids with ASD cannot do this and are not independent enough to go so far from home. In fact, many women with ASD have actually done quite adventurous things. What was not taken into account was that at the age of 15, I 'knew' I was only allowed to shop in one particular shop when I shopped BY MYSELF in a town 30 miles from where I lived. At the same age I 'knew' that I had killed my old best friend because the hatred that I had for her eminated from me and killed her. I 'knew' I was an evil person who no-one wanted to be friends with or if they did then they had every right to abuse me.

 

When I went abroad I did very little for FUN because I had no idea how to structure my time. Within a week I was in a relationship with a man who only wanted to be around me in order to get to another girl. I became obsessed with being able to count all my own ribs jutting out through my skin and lost a considerable and noticeable amount of weight because I was always too busy to eat, became addicted to the feeling of being hungry and exercised excessively. I always described that year as the reason I didn't end up in a psychiatric hospital because I was convinced I would have done if I had remained in close proximity to people who caused me great mental anguish at home. However, I remember that year fondly for the amazing experiences I had but I assure you I am certain that it would have been a completely different experience for someone deemed NT.

 

Why should I now be penalised for having a 'normal' life with family responsibilities? I even felt it was held against me that we are 'middle class' because of course, so many autistics struggle financially. My lifestyle is as a result of my HUSBAND's job. It would not be the same story if I was the principal breadwinner.

 

Perhaps some people do lie. Perhaps some people are convinced they are on the spectrum and they are not. I am absolutely and totally aware of my own limitations, the problems I have maintaining any friendship I have, the way I crack up if my kids make too much noise or I can't get time to myself, the stress I feel when I can't organise my day. I can assure you that I am not lying.

Edited December 5, 2012 by Lyndalou

[sesley]

i have my sons traits i was terrible in social situations,i find sarcasam hard to do and get,i dont know if people are teasing me i still love to be on my own,i dont do touchy feely stuff,dont do make up r posh frocks, i like comfy scruffy clothes, i will be buried in jeans and t shirt. i find crowds impossible, i get anxious when i dont know where to go and i can have a vey bad temper. like my 13 year old don. i was terrible at school. i cant do maths some arithmatic if i can take time to work it out and i was obsessesd with horses still like them

i have a dream land and am distrusting of people i first meet and keep a invisble barrier intil i get to know them and i dont do eye contact,i am my age and have never sought a diagnosis i dont need one since i am like my son.who is Asd.accept he is good at maths and i am not

Edited December 5, 2012 by sesley

[darkshine]

Lynda, I would like to offer some words here and you are completely free to take them or leave them.

 

The subject of self diagnosis is clearly a very emotional one for you, you've had negative experiences with people who don't or haven't taken you or your issues seriously, regarding both you and your son. I recall you describing your experience of trying to go through the diagnostic tests and that you didn't feel you were fairly understood and that was some times ago, but some of what you said here jogged my memory.

 

Autism is a developmental condition and I hope that in 8 years time when I reach your age that I will have put in so much work at my own development to achieve things that I want to achieve, and that my life will look very different, will this take away my AS? No, but I could well not fit the profile so obviously as I do now, because it is a developmental disorder.

 

If you can take a pretty big step back from how this subject is making you feel Lynda, and I really do appreciate that this is an emotive topic area for you - there is some truth in there being some issues around self-diagnosis - of anything and not just an ASD - it doesn't mean that it all applies to you or your life at all, but we have all seen certain posts in meet and greet especially last year and there have been some rather dubious posts there from time to time.

 

You already know my position, I'm not really worried or unduly concerned about labels, and as far as my feelings go on this, if someone tells me they truly believe that they have AS or are on the spectrum then I am perfectly ok with accepting that, I have spoken to a number of people via PM who have not had a diagnosis for a whole host of reasons ranging from age, finances, available resources, being content at understanding oneself, worry about perceptions and careers - to name but a few of the reasons.

 

In my opinion someone doesn't have to have a diagnostic badge for me to speak with them - as I said earlier about rockets and asses - I'm pretty easy going. I try to put myself in some of these people's position, which is difficult since I have the diagnosis (which I didn't even want) and I struggle because on one level I see that a degree of personal understanding could be a really good thing, but I don't think I'd like it if people thought I was a liar or didn't listen to me because for whatever reason I did not have a label.

 

What I would say is that everyone has an opinion, and mine is this:

 

Lynda, you believe you have AS then in my view that is fine by me, I do not think you are a liar, I also think you have a whole wealth of experiences to offer. If other people choose not to listen then that is their choice, as it is your choice to share your thoughts, opinions and knowledge.

 

If I walk into my families home at xmas and say I have AS, they will all tell me I do not, every single member of my family - and yes, I could technically go armed with a diagnostic report - and you know what? It doesn't matter, because there are people out there in the world who will accept me for who I am and possibly even like me, and I'd really rather concentrate on them.

 

As for the people who have beliefs that conflict with my own - well that is fair enough too, we are all entitled to believe what we wish and we all have choices here, and although we may disagree on some things, I think there are other topics where we can all offer a great deal to each other on a different subject.

 

I think that when people are saying their opinions here Lynda, and those opinions are close to you and make you feel angry or upset or like you are being ostracised - it really is ok because although those opinions are aimed at a group of people that just happens to include you, it doesn't mean that anyone is personally attacking you - its just that their feelings and opinions and their experience has led them to their opinions, just as yours have led you to where you are now.

 

Now I cannot speak for everyone here, and I'm not in the best position to do so because I'm alright with people having different opinions to me, even about things that are actually very emotive to me at times - but I can say that there are people on here who are not judging you or thinking ill of you because you don't have a diagnosis, because I am one of them and the big question is, is that good enough? It might only be "some" people or a "few" people - and I guess if that's good enough then it might not matter so much if "some" people or even a "few" people do have issues for whatever reasons about self-diagnosis.

 

Just a few more thoughts

 

Darkshine

Edited December 5, 2012 by darkshine

[justine1]

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.

 

I am sorry but I really don't know what "undiagnosed autistic" means? You can be undiagnosed but suspect you have autism or you can be autistic...but how can someone be an undiagnosed autistic?

[watergirl]

I've been away from the computer most of the last couple of days, but keeping an eye on this thread when I could.

 

It has certainly appears to have brought out some strong feelings, and I think it is important to remember that we are all very different, although many of us have some common traits. For example, on my assessment/dx report it points out that I have great difficulty seeing other people's point of view and that I get upset when I believe other people are acting illogically.........and this is indeed true. So I think it is important for us to remember that the very nature of our condition, whether with a dx or not, may be a factor that will affect our view of other people's opinions......which makes it a bit tricky at times. It may not apply to you personally as you read this, but it may well apply to posts you read between other members interacting with each other on the forum.

I have found that taking my time and thinking about everything I read helps a lot....I try not to post when I get emotionally involved with something I have read....I wait a while and consider it properly. I was discussing this, and other aspects of ASD, with my partner last night, and tried to explain to her that if the discussion on this thread had been happening verbally in a group meeting, for example, I would probably have said all sorts of things that I may have later regretted, as I find it hard to think quickly and say what I really want to say, whereas it is much easier to get it right when writing in a quiet environment.

 

To those parent's who may be reading this, I would hope that us older folk on the spectrum may be able to offer some practical help as well as emotional support. I know I have made progress since I was young, so I am hopeful that today's children on the spectrum can also progress. If the adults on here are able to remember various things that have happened in their lives that have helped them move to forward, and are able to share them, then surely that can only be a good thing. Information is like a toolbox, and if you need a tool for a specific job, you dig around in the toolbox until you find the right tool for the job. As I said once before, the adults on here may be able to provide some of those tools.

 

Hope this makes sense?

[trekster]

You say you had abusive neighbours and yet you do not explain what made them so and you certainly offer nothing to validate your perception of them being that.

 

***i dont appreciate this line of questioning. My neighbours were at least inconsiderate put it that way. My CPTSD brain has blocked it out and i suspect he's autistic so could be on here. Dogs barking at 3am when he came in from drug dealing (verified by the police), music being played until 1am most nights. Guests that made considerable amounts of noise.

 

You say you were isolated, lonely and unable to leave your property. Many people feel like that from time to time. It isn't just some people with an ASD who feel like that.

 

***it is more common in ASD and also i had physically reasons for being unable to leave my property. i was so scared of bumping into my neighbour that i needed my carer to be with me in order to leave. Also my 'walking' is so poor that i would be unable to run down the stairs to get away from my neighbour who was high on cannabis (we smelt the stuff in the communal area)..

 

You say you burned yourself with chicken noodle soup and went to hospital. But you do not quantify a sufficient enough link for that to be associated with any of the above.

 

****i had forgotten to eat because i was hyperfoccussed on my work. When i did eat i sat down with a bowl of soup in my hand that took an hour to make and it went all over me. If a carer had been there they would have reminded me to use a tray but as my home help is only 2 hours per day (weekdays) in my flat that wasn't possible. Due to the lack of sleep and fear of what my neighbours were doing (verified by other neighbours) i was unable to concentrate on making dinner. Most NTs would know that a bowl of soup needs a mat or tray under it so you dont burn yourself. It was a common sense error which due to my ASD i tend to make quite a number of. This is something i have discovered myself rather than been told.

 

Yes you are right though there will be some people on the 'spectrum' who do require more care. But some of us are more than capable of being independent within the society in which we live and even prefer it that way.

 

How can you be independent if you still need help from services that any human being needs help from? eg police, fire, doctors, council? i am semi independent but as i rely on those aforementioned services i wont ever be independent. i would consider myself about 60% independent and thats on a better day when im not relocating my jaw or shoulders because they have popped out in my sleep.

 

My ASD meant my chronic pain disabilities took many years to be diagnosed. Only when i went gluten and dairy free did i finally feel the pain that was so strong i sought medical help which led to the fibro and HMS/EDS diagnosis.

[trekster]

Justine1, i meant pre diagnosed autistics so will change my post to reflect that update.

(Just tried to change my post it wont let me :-( )

On other forums some of them mixed parents and autistics (also autistic parents) everyone's

viewpoint is relevant regardless of diagnosis. Also an apology isn't necessary if you have

misunderstood something ive written unless you jumped to the wrong conclusion.

 

Watergirl i would turn the diagnostic report on it's head, a friend of mine has described

empathy as a 2 way process ie neither person is able to show empathy, which is my

way of thinking as well. Also i would say that my POVs have been dismissed due to my

autism by family members when all they had to do is ascertain why i felt that way and

that they had received the right message behind how i felt. My family have a tendency to

think the worst of me regarding my actions and intentions without asking me and i dont

realise when i should offer an explanation to help them understand.

 

i try to offer practical help and emotional support to others on here, IRL and on other forums.

i normally phrase my comments with 'have you tried? to avoid folk thinking ive missed something

in their conversation. Also start some sentences with 'sound like....' to indicate it is my opinion

which can be informed by my experiences, my university qualifications or doing a bit of google

research on the subject.

Edited December 7, 2012 by trekster

[Lyndalou]

Darkshine

 

I know you are absolutely right and if I take a step back I can see that clearly. I think the problem is at the moment that I am mired in obsessing about what it means to be an undiagnosed or as Treskster puts it a pre-diagnosed Autistic because as you say, even with a diagnosis it's hard to be taken seriously and I'm so sorry that your family treats you that way. My mother is the one person who believes me and given that I've had an awful lot of issues with her over the years with me only really reconciling my feelings towards her in the last few years, this means a lot.

 

I had a bit of an epiphany. I now know why the situation with my friend has upset me so much and can't believe I didn't see it before. It also is a lot of the reason why I feel so hurt coming on this forum and feeling brushed aside. It all comes back to me being 11 years old all over again. It's the feeling of sitting on my step in the playground for weeks on end by myself and ignored by my classmates, left unnoticed by the teachers and having parents I reached out to laugh at me. It's the feeling of anger and absolute helplessness and of not having any idea what to do and who to trust. The situation with my friend right now is a replay. She is popular and attracts people to her like bees to a honey pot just like my friend in primary school did with my 7 years strong classmates. I had worked hard to have a certain rapport with my neighbours who I viewed as (low level) friends who are pals with my popular friend. I had thought that the main thing that upset me was that she has a disabled child and that other people see her situation as more requiring of support than mine. However, it's actually that I know she has 'influence' with other people, even if she doesn't say anything explicitly, that people are onside with her and I am now sitting by myself on my sofa worrying about who to trust and how far her influence has spread.

 

I come on here to look for support and I know that the difficulties I am experiencing right now colours my view of discussions and makes them more personal.

 

Thanks for putting things in perspective.

 

Lynda

[Mike_GX101]

How can you be independent if you still need help from services that any human being needs help from? eg police, fire, doctors, council?

 

For the purpose of this discussion when I speak of personal independence I am talking about independence within the realms of normal every day life - i.e. the independence to make ones own choices and decisions in life, etc.

 

Yes thank you for going into more detail regarding your difficulties; it helps to clarify things a little easier. Yes I can identify with the problems you had with your neighbours because I too have had neighbours in the past who have played loud music until 4am every morning and basically been a noise-related problem with loud clumpsy feet on the floor above, etc. Landlord's aught to be more proactive in this sense because excessive noise-levels by some tenants can mean loss of revenue for them when other tenants end up losing jobs, etc from lack of sleep as a result. I have lived in places where it was impossible to leave the house without bumping into certain flat mates who you would happily go the rest of your life never seeing again - so yes I do know where you're coming from and if it's that bad and the landlord does nothing (if you have one) then independence would give you the freedom (and peace of mind) to decide to move to better accommodation.

 

As per the chicken noodle soup incident - not everyone uses trays when they have a hot bowl of soup to eat from and no table. To be honest I find trays a bit too large and bulky and some times just 'make do' without a tray. That is my decision. That is what it is to be independent.

[watergirl]

 

Watergirl i would turn the diagnostic report on it's head, a friend of mine has described

empathy as a 2 way process ie neither person is able to show empathy, which is my

way of thinking as well. Also i would say that my POVs have been dismissed due to my

autism by family members when all they had to do is ascertain why i felt that way and

that they had received the right message behind how i felt. My family have a tendency to

think the worst of me regarding my actions and intentions without asking me and i dont

realise when i should offer an explanation to help them understand.

Trekster.....Are you able to able to explain to your family that you need open questions to establish the reasons behind your point of view? Also, are you able to establish when and why things have gone wrong in the past regarding your family thinking the worst in respect of your actions and intentions? I have had similar experiences when I have done and said things that were well meant......but I have learned over the years to stop and think for a moment before I say or do some things, and communicate in order to avoid awkward situations later. Is this something you are able to do?

[trekster]

For the purpose of this discussion when I speak of personal independence I am talking about independence within the realms of normal every day life - i.e. the independence to make ones own choices and decisions in life, etc.

 

***Ah that sort of makes sense, deciding what to eat, how to start or end a conversation, asking for help, how and when to leave a situation and how to plan and organise my time are major problems i experience. Being off gluten and dairy has helped with those deficits.

 

Yes thank you for going into more detail regarding your difficulties; it helps to clarify things a little easier. Yes I can identify with the problems you had with your neighbours because I too have had neighbours in the past who have played loud music until 4am every morning and basically been a noise-related problem with loud clumsy feet on the floor above, etc. Landlord's aught to be more proactive in this sense because excessive noise-levels by some tenants can mean loss of revenue for them when other tenants end up losing jobs, etc from lack of sleep as a result. I have lived in places where it was impossible to leave the house without bumping into certain flat mates who you would happily go the rest of your life never seeing again - so yes I do know where you're coming from and if it's that bad and the landlord does nothing (if you have one) then independence would give you the freedom (and peace of mind) to decide to move to better accommodation.

 

***My house is part owned by me and partly by my landlord whose different to the landlord that owns the rest of the block. Housing say it was the council that decided who went in the homes but deny they are council homes. i cant get a straight answer as to why a block with 3 vulnerable women had an addition of a man who they knew associated with dangerous individuals. In order to move i have to sell the property (although an independent advocacy service says my housing association should buy me out) so i can move. The problem is am i making myself 'intentionally homeless' by selling my home with nowhere to move?

 

As per the chicken noodle soup incident - not everyone uses trays when they have a hot bowl of soup to eat from and no table. To be honest I find trays a bit too large and bulky and some times just 'make do' without a tray. That is my decision. That is what it is to be independent.

 

That is something i dont ever wish to be in that case if it means injuring myself due to being unaware of the dangers in my home when making a simple bowl of soup.

[trekster]

Trekster.....Are you able to able to explain to your family that you need open questions to establish the reasons behind your point of view? Also, are you able to establish when and why things have gone wrong in the past regarding your family thinking the worst in respect of your actions and intentions? I have had similar experiences when I have done and said things that were well meant......but I have learned over the years to stop and think for a moment before I say or do some things, and communicate in order to avoid awkward situations later. Is this something you are able to do?

 

i think you mean closed questions? Open questions are far too confusing to me especially about emotions and social situations. Whats gone wrong is my family never ask me what i intended by my actions, inactions or intentions. Until they do i wont be able to tell them because im unable to think of offering my reasons and on the rare occasion that i do they refuse to believe me. All they have to do is background reading on autism especially the 'asperger lens' part in the "parents and professionals guide to Aspergers".

 

if i was able to think about how my words would be perceived i wouldn't be autistic and i would become permanently non verbal because my answer would be each time 'no idea' they could be the sort of person who would get upset with you saying "hello" to them. Also i need to severely limit contact with my 'mum' as her really bad ways of dealing with things (shout at anyone who does something different and call them selfish). Also i am likely to start self harming again as i do when forced to bottle up my feelings and problems i cant take the risk of a relapse by refusing to speak to people because ive no idea how my words and intentions will be perceived by them. Were talking about 3 people in particular 'mum', 'sister', 'aunt' (all in inverted commas because i dont feel they're my family with their blatant disablism especially with the wheelchair).

 

i am rarely able to be myself anymore, if i go out and meet my friends im told 'you're becoming more autistic because you're hanging out with autistics'. if i stay in im told im crowding my relatives. Also 1 relative tells me i need and dont need antidepressants at the same time which means either way is wrong. i find im tied up in knots because they tell me to do something or to avoid doing something and (provided i can translate "dont" to mean "avoid") then tell me off for doing the opposite! im not told where the middle ground is ie the grey areas on their terms. im dreading xmas as i do yearly because i get stuck after the presents part (will start a new thread on the xmas subject).

[Sa Skimrande]

i

 

i am rarely able to be myself anymore, if i go out and meet my friends im told 'you're becoming more autistic because you're hanging out with autistics'. if i stay in im told im crowding my relatives. Also 1 relative tells me i need and dont need antidepressants at the same time which means either way is wrong. i find im tied up in knots because they tell me to do something or to avoid doing something and (provided i can translate "dont" to mean "avoid") then tell me off for doing the opposite! im not told where the middle ground is ie the grey areas on their terms. im dreading xmas as i do yearly because i get stuck after the presents part (will start a new thread on the xmas subject).

 

Interesting in that in my case the more time I spend on my own when it is I do socialise which is rarely these days I am told I am getting more like the typical criteria for Asperger's Syndrome, therefore I understand socialising is very necessary for us despite the problem we have because through the fact we can mimic others, we are picking up social clues all the time and so the more we socialise the more we will appear to be just like everyone else.

 

The world sadly is full of people that like to tell others what to do, it is a power trip for them and they feel more secure about themselves when they are telling others what to do. Of course diagnosi where known add to that power seeking through the fact a diagnosis makes one defective in some way and there open to yet more abuse by the power seeking insecure people.

 

The way you or anyone else can achieve control of themselves is to say to themselves they are not going to listen to others, and why should you if all they are going to do is belittle you with their power seeking activities.

 

Live for yourself, not for others and people who really you don't want their unqualified input, tell them to mind their own business as they are not so perfect themselves.

[trekster]

"The way you or anyone else can achieve control of themselves is to say to themselves they are not going to listen to others, and why should you if all they are going to do is belittle you with their power seeking activities.

 

Live for yourself, not for others and people who really you don't want their unqualified input, tell them to mind their own business as they are not so perfect themselves."

 

Thank you so much for your support and encouragement it is much appreciated.

[darkshine]

Hi Lynda,

 

I know you are absolutely right and if I take a step back I can see that clearly. I think the problem is at the moment that I am mired in obsessing about what it means to be an undiagnosed or as Treskster puts it a pre-diagnosed Autistic because as you say, even with a diagnosis it's hard to be taken seriously and I'm so sorry that your family treats you that way. My mother is the one person who believes me and given that I've had an awful lot of issues with her over the years with me only really reconciling my feelings towards her in the last few years, this means a lot.

 

I think that when we reflect on things it becomes clear that the most important person here is yourself, you need to feel happy with who you are and what makes you 'you'. AS is only a part of you, it isn't the defining feature, there's so much more than just AS isn't there?

 

I'd say find a position where you are happy with you, it doesn't matter if anyone else tells you that you do or don't have AS, what matters is that you know who you are and be screwed to anyone else on that score - there's so many other fights in life and some are really not worth it, for example, my family do not accept my diagnosis, but screw them, I know who I am and its a battle that isn't worth having, its tiring, stressful and emotional, and we get on a whole load better if I just leave it be.

 

I think we all seek some level of understanding, I think some of us want to be understood - but we have to understand ourselves and value ourselves - its upsetting when people don't believe us, but we have to believe in ourselves and if we do that, then it doesn't matter so much about some things that other people don't believe.

 

I had a bit of an epiphany. I now know why the situation with my friend has upset me so much and can't believe I didn't see it before. It also is a lot of the reason why I feel so hurt coming on this forum and feeling brushed aside. It all comes back to me being 11 years old all over again. It's the feeling of sitting on my step in the playground for weeks on end by myself and ignored by my classmates, left unnoticed by the teachers and having parents I reached out to laugh at me. It's the feeling of anger and absolute helplessness and of not having any idea what to do and who to trust. The situation with my friend right now is a replay. She is popular and attracts people to her like bees to a honey pot just like my friend in primary school did with my 7 years strong classmates. I had worked hard to have a certain rapport with my neighbours who I viewed as (low level) friends who are pals with my popular friend. I had thought that the main thing that upset me was that she has a disabled child and that other people see her situation as more requiring of support than mine. However, it's actually that I know she has 'influence' with other people, even if she doesn't say anything explicitly, that people are onside with her and I am now sitting by myself on my sofa worrying about who to trust and how far her influence has spread.

 

I would seriously consider this situation Lynda, if you are feeling sidelined, is it because you actually are being sidelined (in which case these people are not worth this level of anxiety) and if that is the case you can exchange pleasantries and treat them as neighbours and see them as low level friends.

 

Or are you upset because of your friend and your perceptions of her, are you withdrawing because you feel those old feelings and worries returning, in which case it could be a bit of a self-fulfilling prophecy.

 

I personally find it difficult having a broad social circle, its ok if the level of meaning I place on it is minimal in an "acquaintance" type way - but with "friends" it can get really complicated as there's more feelings involved - as such I keep things simple and minimal because to be honest, I can't be bothered with the hassle.

 

I find my past feelings infringe on the present, but sometimes I do have to look really hard and see if I am doing anything differently, because at first to me it looks like everyone's changing, when in fact a lot of the time they aren't changing, they are reacting to me behaving differently and closing myself off - previously I've gotten really angry and upset that everyone's acting in a certain way - and I think, looking back that a fair amount of the time it was definitely me who changed because i thought something and never got around to checking I was right.

 

An example of this would be a couple of friends I had a long time ago, I got on well with one, and not the other, now they used to go out together without me, and me and the friend I liked used to go and do things. I thought they were best pals and I was the third wheel, turned out, when I actually got around to asking a few years later and after we'd all moved away from home, that the friend didn't like the other person but felt sorry for them. So sometimes things aren't always as they seem, and sometimes it us who make things worse by stressing and then we behave differently and consequently so do other people.

 

I come on here to look for support and I know that the difficulties I am experiencing right now colours my view of discussions and makes them more personal.

 

No worries, we're all human here, we're all flawed lol, I just wanted to help you take a step back because I could see that you were getting upset, I believed that there was some degree of misunderstanding between people talking here and while everyone's opinions are completely valid, I do think that the lines of the discussion were vague and too open for interpretation which could be why it got to you, as well as your personal circumstances at this time - its difficult when a topic hits a nerve for someone, especially when that topic could be interpreted a number of ways and I think the subject of self-diagnosis has the scope for a fair number of topics, some which would undoubtedly be a lot more emotional than others.

 

Best

 

Darkshine