Tough Time

[Matt J]

The top suggestion is 'get a hobby' how can you do that when you have no motorvation what-so-ever.

if I am not on here, i am sleeping, if im not sleeping im online, or watching tv, or both.

 

I could sod those people of who 'claim to be friends' all off, but I do like hearing off them when they can be bothered to get in touch, sodding them all off that would loose me most of my communicating, and that would cause me to annoy the few that were left more.

 

How the heck can I have a high IQ? When I cant even do simple things like amuse myself?

They say the higher IQ you have the more bored you get as you want to keep an active mind and can't

[Clare63]

No noone should have to face everything by themselves and you have made a very positive and good start by joining this forum. It makes me so cross when people say "only you can solve your problems" that's what school tells my son, trouble is he has not got a problem its everyone else, ie not being consistent, following rules etc., I am supposed to be NT and I find this world a confusing and annoying place, so what chance does my son have making sense of it all as he grows up. Its others expectations and lack of understanding which is the real problem and I guess its our role to make them see otherwise. IYKWIM.

 

Clare x x x

[Matt J]

Hobbys are hard just to "get"!

You just wake up one day and decide your hobby is gonna be....stamp collecting!!

It just don't work like that

[Clare63]

What sort of things were you into when you were a kid ?

[pearl]

I think you are in a dark place right now Matt & any suggestions we make will fall on deaf ears until you yourself are ready to take on the world again.

 

I have suffered depression myself so know about how hard it is to get motivated, but ... I'm going to sound like a mum now ... one of the best things you can do to fight it is make yourself a routine & stick to it. Think of it as therapy. So, you start going to bed at a reasonable hour. The first few days you wont be able to sleep as you've been used to staying up, but eventually your body clock will readjust. Set an alarm, get up in the morning, have a proper breakfast & a shower. All of these things use up time & help give a structure to your day. If you dont have a job, find a substitute. Volunteer somewhere that matches your interests - charity shop, RSPCA, whatever. Hours to suit you. People to connect with. Limit the things that arent good for you. So if you spend an hour on the computer, spend the next half hour going to the shop for a paper, some exercise & fresh air. Baby steps - start with what you can manage & do a little more each day.

 

You are probably thinking, she doesnt understand, but believe me, I do. I can remember lying on my bed in the daylight with my curtains closed & just wanting the world to go away & leave me alone. I was very young then, & the daft thing that put me on the road to recovery was getting a dog. I had to look after it, & give it walks, & in return it gave me cuddles & love.

 

You wont want to listen to what I have written until you are ready to hear it, so come back to this when you are. <'>

[Clare63]

Very wise words from Pearl.

 

Take care Matt, here if you need us.

 

<'> <'> <'>

 

Clare x x x

[Matt J]

I cant really do the outdoors thing, as when I get out, I have to get home asap, dont ask why I just need to be in my comfort zone.

 

I cannot get motivated, not at all. i dont go to bed until 4am most days, then i dont sleep very long.

Connecting with people isnt a specialiaty when you have AS

[Clare63]

One step at time Matt, one step at a time. It ain't gonna be easy and no one is saying it is. Just stay outside as long as you can and then try over time to increase the time, slowly incorporating into your routine. Make a list of some goals you think you may be to achieve, pick one and test it out.

 

Clare x x x

[Clare63]

One step at time Matt, one step at a time. It ain't gonna be easy and no one is saying it is. Just stay outside as long as you can and then try over time to increase the time, slowly incorporating into your routine. Make a list of some goals you think you may be to achieve, pick one and test it out.

 

Clare x x x click on it twice !!!!

Edited January 1, 2008 by Clare63

[Matt J]

I need friends, buddies, contacts, people to talk to, to encourage me to do things, involve me in things, anythings, but no one does. They all ask how you are and the moment you mention the D word they are on your case preaching to you or they dont want to know, or havent a clue what to say to you.

 

I dont need my friends to 'tell' me what to do, I need or would like people to help, assist, encourage, ask after my welfare, if they can do anything, build my confidence, make me have some kind of purpose.. as at the moment I have very little purpose....

[Tally]

Are you getting any help Matt? From the mental health service or anything?

 

It is really hard to find the motivation when you're really down, but anything extra you can manage is a positive step which you can feel proud of.

 

It's difficult when you don't get any happiness from anything. Can you remember the things you used to enjoy? It might give you a bit of a lift if you try one of those things.

[Matt J]

No, the MS are not doing much at all, they are dragging their feet, they rufuse to believe I have AS. So I did self diagnosis and have gone about it that way with help and assistance from the NAS.

Every consultant I have seen just dismisses it, and I havent the idea of who to contact in this area to get assistance, as I have with the BA and DLA too.

[Tally]

Are you getting any help with the depression and agorophobia at least? They are clearly having a huge impact on your life and disabling in and of themselves.

 

You are probably not able, at the moment, to push for Asperger Assessment, and have far bigger problems to deal with.

[Matt J]

Well I would like help and assistance from my friends but thats not happening, so I cannot conquor the agorophobia as would be good to get out. As for the depression nothing is happening there either.

[Karen A]

Hi Matt sorry you are having a tough time.It is difficult coping with feeling down.I am not sure who MS are.Do you get any regular support from a psychologist,psychiatrisrt or CPN ?.It is very difficult to get an assessment for AS as an adult in the UK.Professionals with the knowledge and experience to diagnose adults are very difficult to find.

Things are more complicated for adults who may have AS but who may also have other mental health issues such as depression or anxiety.Finding a professional within adult mental health services with experience in diagnosing AS is likely to be difficult.To be honest even if you are able to obtain a diagnosis of AS it is likely to be extremely difficult to access specialist support for AS.

However it is worth talking to your GP about how low you are feeling,about how diffiucult you are finding it to get out and about your difficulties sleeping.

If you are feeling very low it is important to talk to your Dr or to a professional that supports you as they may well be able to help.It is difficult to differentiate between AS and some other mental health difficulties and if you are very low and have not had an AS Diagnosis from a professional it is important to not rule out other mental health issues that if treated might improve.Karen.

[Frangipani]

Hi Matt,

 

Jut caught up with your post. My son went through everything you have discussed so far yet he had a diagnosis at 4, signs were there at two. His ASD is more complex when you get a diagnosis this early.

 

Still, from the age of 15 things went pear shaped. Everything you described he could have written the same. Here is how we got through the Agrophobia and anxiety attacks. We have a community health team especially for youth. He visited him weekly - it was free, a medical professional a Paediatrician and GP failed to help and referred him to a Clinical Psycholgist.

- straight away my son clicked with this 'young' Clinical Psychologist. My son couldn't wait to go back each week, he eventually suggested meds to alleviate the anxiety. He gave manageable baby steps to try. I believe someone like this would be a huge relief. Each time my son left he had a smile on his face because this guy worked out what the triggers were and helped with each and every one of them. Plus strategies for social situations.

 

My son has hand weights for exercise and gradually built up a collection of things for a home gym with his favourite music. This helped his confidence. Are you interested in IT etc, this is really beneficial.

 

Frang

[Matt J]

My GP fails to see I have AS, he tells me he a GP and cannot do anything other then refer me, when I went the Specialist just shook his head and said no no.. I took along the Iq test and a print out of the AS page from the NAS website to support me in telling him what I was experiencing. Still am waiting for someonen to contact me about how to get diagnosed properly. I feel until I am, Im going to bed depressed and my anxiety goes higher and higher, Have spent most of today in bed as I cannot face the day.

[Matt J]

Well I have been awake for all about about 3 hours maybe more.

I am going to good somethings that were suggested In a PM I got so thank you to the person who took the time to do that.

 

Im trying, well failing really... Im just trying to minimise people 'leaving' me as they dont understand what I 'AM'

I did have a fair few friends now I have about 2 if that and everyone seems so 'busy' all of a sudden since the AS beccame known.

Edited January 2, 2008 by Matt J

[Karen A]

My GP fails to see I have AS, he tells me he a GP and cannot do anything other then refer me, when I went the Specialist just shook his head and said no no.. I took along the Iq test and a print out of the AS page from the NAS website to support me in telling him what I was experiencing. Still am waiting for someonen to contact me about how to get diagnosed properly. I feel until I am, Im going to bed depressed and my anxiety goes higher and higher, Have spent most of today in bed as I cannot face the day.

 

 

Hi Matt.Sorry you are having a tough time today.I was wondering if the specialist is a specialist in ASD and what sort of professional they are ? Karen.

[Matt J]

Well the specialist was a Psychologist and he told me I was depressed, (Which I already knew) but he was the one who was surposed to have had dealings with AS but he just shook his head when I said and showed what I know I have.

 

I have not seen anyone since as I am awaiting someone that will actually take me seriously

[cmuir]

Hi Matt

 

Just been reading your posts and saw your post that you're finding it really difficult to venture outside and that you're depressed. I'm NT, but my son (aged 6) and husband (undiagnosed, but definite AS) both have AS - some days things really get on top of me and I don't feel like venturing out at all (admittedly, I'm feeling pretty depressed right now). In fact, if I didn't have to work, I suspect I wouldn't go out at all and that's why this forum is a real godsend. I've actually met quite a few people from this forum and they've been incredibly supportive. Absolutely everything in my life seems to revolve around my son and husband and I'm finding that incredibly difficult to deal with. I really feel like I've ran out of steam. Enough about me though! could you contact NAS asking for details of a local support group. Can't help think that you're obviously in need of understanding from people who know about ASDs (either have a loved one who has an ASD or who have an ASD themselves). It's difficult to make people understand and listen and be supportive, whereas people already living with an ASD could be just what you need right now.

 

Best wishes.

 

Caroline.

 

I have edited this post as the safety of Forum users is very important and may be compromised by arrangements to meet with others in reallife.Regards Karen.

Edited January 2, 2008 by Karen A

[bikergal]

Hi Matt, I'm in a similar place to you. You've had some good advice, I would definitely see a gp re the depression. I've just gone back on anti d's because I felt so stressed and physically tense and these take the edge off it. I also have a befriender from the mental health befriending scheme, not sure if there is one in your area but the NAS also do a befriending scheme. As for diagnosis, I didn't bother with the NHS but saw a private specialist who diagnosed me in June last year. I know how lonely and isolated you may be feeling, please don't feel you have to cope with this on your own. Feel free to pm me. Hope you're having a better day today <'>

[Matt J]

I just want to have dx and then I know where I stand, and I can go forward, as right now I havent the foggiest.

GP doesnt do much about the Dpresssion or the AS, he just shakes his head and advises me to 'get out more' if he read what I had given him that I had printed off then he would see.

 

I dont think half the GP's have ever woken up thinking, "I dont wanna get up today" and

also "I Cant face the GP appointment as he wont believe what I am saying". Im sure most normal humans have.

[cmuir]

Hi Matt

 

You need to be really strong. GPs are general practitioners - they're not experts and very few have specific areas of expertise in which they're particularly knowledgeable about. You need to ask for a referral. You get some GPs which are more sympathetic than others, granted, but be firm and tell him/her how you're feeling. My advice would be to note down in bullet point format examples of things you find difficult to deal with (justify why you think you have AS).

 

I actually kept a diary over an eight month period and photocopied parts and sent it in advance of appointments for my son when trying to get him diagnosed. I really believe that's what helped. For example, Christmas he would not touch wrapped presents, instead piling them up behind dining room table and wouldn't look near them (needless to say, I don't wrap pressies anymore!). His birthday was disasterous - hired fire engine and him and 3 'friends' accompanied by me went off for a ride in it and he didn't look up once. It was clear he was very uneasy. The list could be endless, but basically, I listed examples of things that NT kids would be fine with/things which Robert had difficulty with. What it did clearly show was that my son has great difficulty coping in situations where there's a lot going on eg lots of people/noise/etc (over-stimulated). Trips to the seaside where it's secluded proved to be much more fruitful and enjoyable for him.

 

Obviously with yourself, it's a bit different because you're an adult, but you need to try and outline how you're feeling, if you're able to articulate that. It doesn't have to be a long report (quite the opposite - they won't have time to read it), perhaps A4 sheet. Just be as brief as you can. In one of your posts you've already said you stayed overnight with a friend and found that very difficult. Also, you don't want to go outside, etc. This is something you might need some help with. Appointments can be incredibly difficult in that you're mind races and when you're actually there, you forget what you wanted to say or it all comes out wrong. That's why putting pen to paper can be really helpful.

 

Best wishes.

 

Caroline.

[baddad]

Hi matt -

I've just been looking through this post, and from an outsiders perspective it seems like you're trying to tackle things from the wrong end...

 

Whether you have or haven't got AS is - in terms of the problems you're experiencing - a moot point, but you seem to be rejecting all of the support that IS being offered to pursue some sort of external answer... The psychologist may well be seeing that as some sort of 'projection' or denial of the things that are really affecting you, and unless you spend time exploring that with him he is really going to be unable to form any sort of opinion, inclusive of ASD or otherwise...

 

All of the things that are really getting to you (isolation/depression/fear of the wider world/feeling overlooked and abandoned/stress) are things that can effect anyone, and whether ASD is part of that mix or not it's important to respond to them appropriately. Your GP has helped you by referring you to someone who can help in that process if you give them the opportunity to do so, and if the consultant is a psychologist who 'knows' AS/ASD (as you have said) chances are that if it is a factor he is more likely to 'see' it than one who doesn't.

 

Walking in and saying to any professional (ESPECIALLY a psychologist!) 'this is what I've got, please confirm it' is really unlikely to produce the result you want. Sitting and talking to him/her, explaining why you feel that it's relevant and how it relates to the problems you are encountering, is much more likely to be productive in getting to the root(s) of the problem.

 

Most importantly, I'd reject the idea of finding any 'solutions' from an ASD diagnosis - while ASD may be related to how you interact, the problems themselves are not ASD specific, and even if they were an official dx isn't going to take them away.

 

Hope that helps

 

L&P

 

BD

[cmuir]

Walking in and saying to any professional (ESPECIALLY a psychologist!) 'this is what I've got, please confirm it' is really unlikely to produce the result you want. Sitting and talking to him/her, explaining why you feel that it's relevant and how it relates to the problems you are encountering, is much more likely to be productive in getting to the root(s) of the problem.

 

Most importantly, I'd reject the idea of finding any 'solutions' from an ASD diagnosis - while ASD may be related to how you interact, the problems themselves are not ASD specific, and even if they were an official dx isn't going to take them away.

 

Hope that helps

 

L&P

 

BD

 

 

Hi Baddad

 

Hope I'll be forgiven me for challenging some of your comments ...

 

Referrals to specialists eg psychologists etc are not always fruitful. Frankly some of them are underqualified (they may have the theory, but no practical experience) and cannot give the appropriate level of support, diagnosis, etc. So just because Matt has had referrals, doesn't mean it's to the right people. It can be 'pot luck'.

 

In my experience so far with my son, I've seen several specialists who frankly haven't a clue (some of them are idiots to put it bluntly!). Because my son didn't tick every little box on their checklist that was it - we were going to get nowhere. Truth is to get anywhere, you need a diagnosis - I was amazed when I asked 'so what happens now that we have a diagnosis?' to be told by the consultant that my son would be seen by a SALT, he'd be put on the special needs register, etc. It was only after a great deal of perseverence and backbone on my part that my son did get diagnosed because I desperately wanted peace of mind (a reason for why he behaves/acts the way he does) and I wanted him to get the help and support and understanding that he needs. Because I know my son better than anybody, I felt this qualified me to be able to say to specialists 'I think my son may have ...' - I was also able to back this up and I do think that specialists listened thereafter. Only Matt knows how he's feeling, and if he's done his research and has a strong suspicion that he has an ASD, then that qualifies him to say that (again, as long as he can back this up).

 

Again, in my son's case, a diagnosis didn't take away the difficulties nor does it solve anything. What a diagnosis does is give peace of mind - I had a reason (not an excuse) why my son behaves the way he does. Not only that, a diagnosis suddenly opened doors - my son was assessed by SALTs, placed on special needs register, etc. This would not have happened had he not received a diagnosis. In addition, I believe a diagnosis can make some individuals more tolerant and understanding (not always of course).

 

Caroline.

[Mumble]

Hi Matt/Cmuir/BD,

 

I've been very careful to avoid this thread till now because it has, in parts, 'set me on edge'. But now I'm going to wade in . . . *sounds of water sploshing everywhere*.

 

I think the specific difference between what BD and Cmuir are saying is that BD is speaking about an adult getting a DX themselves whilst Cmuir is talking about getting a DX for a child. The first is about saying (as I think you are doing Matt, and excuse me if I'm wrong), I've self-dx as blah, I want someone to tell me I'm right, whereas Cmuir is approching from the perspective of I think my son/daughter has specific needs, please address these and label them to help me and others understand him/her. These are entirely different situations. I have no firsthand experience of the second, I can't think what it must be like to have a child who you know needs support and people aren't listening. However, that's not, what I think Matt's issue is or what BD is saying.

 

My position - I think a proper, clinical DX is important. It stops you thinking about all the other things that might be causing the particular difficulties you're having. It's not easy to get, but if you are affected to the extent that a DX is warrented (and remember that one of the DX criteria, for adults is that it have a pervasive impact on all areas of daily functioning, then it is worth pursueing. But a DX isn't the end. It isn't a magic wand that says this is what you have, all better now; it's the beginning of a very long, painful journey of self-discovery and understanding.

 

What I have very very strong reservations about is anyone who says they are AS without a full clinical DX. The only people who can DX ASDs are properly trained clinicians, and whilst there are a limited number of these, they are the only people who are trained to give the appropriate DX. It makes me very angry to read of people who label themselves "self-DX AS". There is no such thing. You can read about AS and look at the checklists and say I seem to have some of these symptoms/characteristics, but the actual DX is far more intensive than a few simple checklists. You (I mean a generic you here) wouldn't dare to DX yourself with a multitude of other medical conditions - you would go to the doctor saying you have noticed particular lumps/bumps/symptoms. ASDs should be treated the same. They are complex, and all that self-DX does is increase the likelyhood of others saying to a full clinical DX, "oh, well I do some of those, I can answer those checklists, everyone's a bit like that". Self-DX and the possibility of AS (and particularly in the student/young adult population) becoming a "fasionable" label really dismisses the acute difficulties that those who have a full clinical DX face on a day to day basis. It also serves to give a very skewed impression of what AS is all about. We're not all depressed people who do nothing all day and don't listen to advice. We're not all incapable of being involve in social interaction, having social relationships and leading a happy and fulfilled life. Sure it's harder, but AS is not an excuse not to bother. I hope you don't think I'm getting at you here Matt, because that's not my intension at all. I am simply concerned about the potential for over and particularly self-DX to further distort the already fairly negative impression of ASD. If you've got to adulthood without a DX, ASD is not an excuse - it's as simple as that. I'm not denying that other individuals are not more severly affected, and I am not dismissing anyone's situation on this forum. I have read how much you all struggle as parents and I am in awe of your coping skills. All I'm trying to say is that this shouldn't be about blame, which is the impression I have got through this thread and why is has got me slightly worked up. Now of course, I'm speaking from the perspective of looking back - it's taken me almost a year to get to this position of acceptance and I know how ###### hard it is going through the process of being DX and coming to understand the self.

 

But if you are ASD, you will always have been ASD; it can't be used as something to explain current problems. I think BD makes a very important point about the characteristics you are describing not being ASD specific. And I think these need to be explored. The trouble with finding something that you think 'fits' is that you read the bits that fit and not the bits that don't. I would be quite willing to bet that there are multiple other checklists for other conditions that could be made to fit the characteristics you describe. I'm not sayign you're not AS, I'm simply saying that you need, as BD says, to take some time to explore all options.

[baddad]

Hi Baddad

 

Hope I'll be forgiven me for challenging some of your comments ...

 

Referrals to specialists eg psychologists etc are not always fruitful. Frankly some of them are underqualified (they may have the theory, but no practical experience) and cannot give the appropriate level of support, diagnosis, etc. So just because Matt has had referrals, doesn't mean it's to the right people. It can be 'pot luck'.

 

Caroline.

 

Hi caroline - No, no problem at all with you challenging my comments

I'm a bit pushed for time now to respond fully, but would quickly like to clear up this point...

I made my comments about the specialist based on the info Matt had posted... At one point he says 'every specialist i've seen..' (suggesting that his GP has helped with more than one referral) and also states that (one of?) the psycholgists he saw

 

told me I was depressed, (Which I already knew) but he was the one who was surposed to have had dealings with AS

 

While I would agree that GP's aren't necessarily 'up' on AS etc, The comments I made are valid on the basis of the information Matt supplied.

 

I'm certainly not suggesting that Matt does not have an autistic spectrum disorder (nor endorsing his personal belief that he does) as I've never met him and am not qualified to make such a dx in the first place... all I was saying was that he has been offered support avenues which could lead him to better awareness if he were to take them up... Additionally, whether AS is or isn't a factor, the problems Matt faces at this point indicate of themselves a need for support that should not be overlooked for the sake of pursuing a dx which may or may not be relevant.

 

One final point - I'm sorry, but i do not agree that parents or patients automatically 'know best'. (that's a general observation, BTW, so please don't misinterpret it as specific to yourself or to Matt's situation). Certainly the observations, experiences and knowledge that parents have of their children can be hugely valuable to the diagnostic process and should be part of any holistic assessment, but if we reach a point where 'because my mum says so' replaces thorough medical investigation I think we'll be taking a big step in the wrong direction.

 

Hope that clarifies things a bit

 

L&P

 

BD

[pearl]

It makes me very angry to read of people who label themselves "self-DX AS".

 

Mr p's sister self dx'd after JP's dx. We have no problem with that, as she feels no need to get an official dx. She doesnt want any additional help, is retired, does voluntary work that suits her skills, & is generally a happy bunny. To her, finding out about JP just made her realise that she had been like him all her life, & gave her some understanding of why. She looked at her past, & forgave herself for not coping in certain situations.

 

I can understand where you are coming from with this Mumble having gone through the long & arduous process of official dx yourself, it seems like a cop-out that someone can just "decide" they are AS, & I'm sure that some peeps self-dx erroneously. But I also think that some, like JP's aunt, self-dx correctly with no "agenda", & personally I'm absolutely fine with that.

 

Anyhoo I'm making this slide off topic as usual, sorry

[Matt J]

Walking in and saying to any professional (ESPECIALLY a psychologist!) 'this is what I've got, please confirm it' is really unlikely to produce the result you want. Sitting and talking to him/her, explaining why you feel that it's relevant and how it relates to the problems you are encountering, is much more likely to be productive in getting to the root(s) of the problem

 

I havent just walked in and handed him it to him on a plate, I have sat there a few times and said to him.. I think I have this...(My GP is a bit thick) and have taken supporting evidence with me, and print outs of what I can relate to...

 

I was refered to one psychologist who asked me "What I can do for you" and again I did exactly what I did with the GP.

 

Since then I have asked my GP to get me soemone with some experience of AS, this was in October, I am still waiting.....

[Karen A]

Hi Matt.Unfortunately there are very few professionals with the experience and knowledge to Diagnose AS in adults.It is not considered a priority for funding.Adults on the Forum who have obtained a Diagnosis as adults have had to push long and hard to access professionals who can Diagnose.AS is a relatively new Diagnosis so until a few years ago many individuals were simply not Diagnosed at all.Many adults with AS here have also eventually payed to obtain a Diagnosis privately.

General Practitioners are just that...they are not specialists,psychologists or psychiatirists.Your GP may well be having difficulties finding who to refer you to.If your GP has qualified as a GP he/she may be many things....but will not be thick I asure you.

In our area a wait of 2-3 months for an Assessment Appointment would be considered very brief.If you read around the Forum you will discover that it is fairly ''normal'' for parents to wait for years rather than months to obtain a Diagnosis.

We started Assessment for Ben two years ago and even with excellent input from some very good professionals we do not have a clear AS Diagnosis.Karen.

[Mumble]

Mr p's sister self dx'd after JP's dx. . . . She looked at her past, & forgave herself for not coping in certain situations.

And that's fine. To say, I probably have 'blah', or at least many traits of blah, as a way of understanding yourself, no problem.

 

To say, I'm AS, catagorically, without tempering it in anyway and using it as a reason/excuse for something - that I think is problematic.

 

But I also think that some, like JP's aunt, self-dx correctly with no "agenda", & personally I'm absolutely fine with that.

How can you know it's a 'correct' self-dx? If it's causing her no probs now, then actually she wouldn' be dx, hence her self dx must be wrong. I'm not getting at you at all Pearl - please please don't think I am. I just think that if we accept self-dx we're at the top of a very very steep slope and it's going to be difficult to turn around. We all know the problems that we currently have with people being dismissive. I was horrified to read a student forum recently where student self-dx were going on about it, and using it as an excuse. Things can be hard, sometimes, being AS without support, but support requires understanding and if we go off down a route that potentially could reduce understanding by making ASDs simply a 'fasionable' label for bad behaviour/lazyness/whatever, we ignore the real difficulties that people face and put up further barriers to understanding.

[Mumble]

I have asked my GP to get me soemone with some experience of AS, this was in October, I am still waiting.....

Is that all? That's only just over two months, Matt. It takes time to be referred to the correct people, and although this can be frustrating, in some ways it is necessary that you do go through the 'proceudures' and that other possibilities are ruled out.

 

If you think your GP is referring you to the wrong people, then you need to find who you want to be referred to. However, funding it finite, an adult AS dx can cost between �1000 - �3000 to your PCT/funding authority - if they're spending that, it's right that it's correctly spent and done with appropriate referrals. Most clinics require what called I think a second-level or somethingorother referral, i.e. from a psychologist, hence you do need to follow up with what's offered, even if it's less useful longterm.

[pearl]

How can you know it's a 'correct' self-dx? If it's causing her no probs now, then actually she wouldn' be dx, hence her self dx must be wrong.

 

I didnt say it wasnt causing her any problems. Just that she feels no need to seek help because of her undemanding lifestyle. In a different, less supportive family, in a demanding job, if she had had children .... it might have been a very different story. Personally it has helped me take a step back when she flies into a rage when people don't obey the rules during a board game, for instance, whereas at one time I'd have just got cross with her.

 

And I know her, Mumble. I am absolutely sure she is AS.

 

And like it or no, people are going to join this forum "self dx'd", and we should make them welcome.

 

And I'm not getting at you either. <'>

[Mumble]

And like it or no, people are going to join this forum "self dx'd", and we should make them welcome.

I'm sorry if I've made people feel unwelcome

[pearl]

I'm sorry if I've made people feel unwelcome

 

You haven't.

[Bard]

Hi people!

*wades in, wearing green wellies, splosh splosh*

 

A forum is a place for debate and exchanging ideas and opinions, so having an opinion that doesn't match someone else's is OK. It doesn't mean that anyone is wrong, and as long as no one gets personal and unpleasant, then different views and definitions are fine. To have to stop a dialogue is sad.

I think self dx is tricky if it then stops the individual looking at other possibilities, and that narrow focus might then prevent more appropriate help being sought. I also have dealt with many parents who have dxd their children with ADHD, with a vague understanding of what that is, when I would see parenting strategies and diet as a key to their behaviour. A label used as an excuse is not good.

I look at my partner of almost 25 years, and I can see so many spectrum traits that I do think of him as Aspie, and many of my coping strategies to enable my marriage and home to work well are based on my assumption that he is.

I would never say 'He is AS' and he would deny that he was, as he's never read anything to do with AS or been interested in it. So if someone said, 'He's not on the spectrum' I'd say OK. And then I would go on using what works.

Back to the beginning, it's only my opinion. So there isn't a right or wrong, only different viewpoints which I think is healthy and useful and educates us all.

[llisa32]

Hi Mumble/Pearl <'>

 

Mumble - I don't think you've made anyone feel unwelcome, you were fairly direct in your post and I don't think you meant to be as 'black and white' as it may have come across (feel free to correct me!

 

I think that individuals who self diagnose as a way in which to better understand themselves, and whose lifestyles mean they can live a happy and fulfilling life without an 'official diagnosis' are quite correct to do so. They don't need a diagnosis because they don't feel the need for any external support etc in order to live (in terms of full and happy adult life)

 

I think you mean that for individuals who clearly are in need of some support/proper guidence etc a 'official' diagnosis is the better route to take as then the various difficulties that individual has are taken fully into account, and the more adult's that are officially 'diagnosed' the more seriously the condition will be taken....and hopefully that will also equal more funding in the future.

 

I write this also thinking of my son's dad.....he is also most likely AS, but even after J's diagnosis, I know he will recognise himself in there, but I also know he will not want to pursue a 'official' diagnosis because he is happy with his life as it is and does not feel the need to have anything 'official' - but again, like Pearls aunt, he does not require nor need any external support/assistance etc.

 

I think the older the adult, the less likely they will seek a diagnosis - depending on difficulties obviously.

 

Hopefully I got what you were saying correctly, and Matt...I think what we're all trying to say to you is please do pursue a diagnosis, even if the professionals you have come across thus far have not been overly helpful.

 

It;s likely that along the path of getting diagnosed you will come across some professionals who can and will help you.

<'>

[pearl]

I look at my partner of almost 25 years, and I can see so many spectrum traits that I do think of him as Aspie, and many of my coping strategies to enable my marriage and home to work well are based on my assumption that he is.

 

I can identify with that Bard, the difference being that mr p recognises his aspieness which kind of eases things. Again, only realised after JP's dx, & he feels no need to pursue it further. If he did need professional help at some point then that view might change.

 

I hope I've not upset you Mumble - it had honestly never occurred to me until reading your post that someone might find a self-dx objectionable, so was good to read your views on it.

[Mumble]

So there isn't a right or wrong, only different viewpoints which I think is healthy and useful and educates us all.

The wise witch speaks again!!! :lol:

 

 

Mumble - I don't think you've made anyone feel unwelcome, you were fairly direct in your post and I don't think you meant to be as 'black and white' as it may have come across (feel free to correct me!

I think you've got it. I am concerned about self-dx as a public said thing, if that makes any sense I think as Bard says, the treating Mr Bard as AS, if it works, is fine. If a strategy works, whatever the dx, or if a dx changes or is added to, that's fine. People are, after all, individuals. My concern isn't with anyone here, at all, or anything anyone has said - it's with people (mainly students) who think AS would make a good 'excuse' for not working, and hence degrade and diminish any public understanding the rest of us have worked to develop. I just think we need to be careful, that's all I was trying to say.