I don't have an ASD

[asereht]

So glad to hear you're staying

[~Jonathan~]

Right well it now goes from the sublime to the ridiculous. I was chatting with a friend who works with adults on the autism spectrum and he believe I do have AS or at the very least have 'key autistic behaviours' as does a friend of the family who has often wondered why I live as I do (very rarely going out, still living at home, not been in a sexual relationship, finding eye contact extremely difficult, talking too loudly or hardly at all, saying the wrong things, bumping into things, feeling awkward on social occasions, flat way of speaking etc etc) and she feels that I have some form of ASD. The only thing is, if my GP doesn't believe I have it what can I do? I can remember emailing Dr. Tony Attwood with my symptoms and behaviours and he was of the opinion I had it. This is all so confusing. Yes, Avoidant Personality Disorder does address a lot of what I feel but (and I feel bad for saying this) I think I read more into it than is there because I was happy to be seen to have something that isn't an ASD. That's terrible isn't it? I think I am ASD deep down I was diagnosed in 1999 with Tourette Syndrome because I repeat stuff over and over under my breath and make noises and mutter and click my tongue and stuff and I can't help but wonder whether this is an ASD thing and not a TS thing because I know that those on the spectrum can do this. However (and sorry for all these edits) I have a fantastic imagination, so maybe .... oh I don't know anymore

Edited May 22, 2006 by ~Jonathan~

[Flora]

Jonathon, probably a silly question, but have you contacted the diagnositc clinic at Cambridge? Their phone number and details are on the cambridge autism research website. Their only criteria for accepting adults for assessment that they have a close friend/relative who has known them for along time and is about 5 years their senior.

 

Just a thought.

 

Lauren X

[~Jonathan~]

Well, my friend who works with adults on the spectrum is older than I am, has known me since 1998 and believes me to have an ASD. Would that do? He could write to them for me expressing his concerns.

[Flora]

Jonathon I think that might do. They really want someone with information about what you were like when you were a child but someone with knowledge of ASD who has known you for 8 years might just cut the mustard. I know I know ridiculous isn't it? Apparently there are rumours and talks about this part of the adult diagnostic criteria being done away with, about time, I mean how many of us have parents that remember??? My mum thought I was a genious because I used to crawl round the floor undoing all the tight knots in shoe laces that other people couldn't do. She's hardly likely to go along with something that may suggest I'm neurologically impaired I wouldn't even ask her.

 

It's worth a try Jonathon.

 

Lauren

[barefoot wend]

Jonathan

 

This must be very difficult for you. Reading on the internet about Avoidance Personality Disorder there are similarities with aspects of asd that you are obviously aware of. To get any kind of definitive answer would require an expert in the field. Perhaps if you speak to the National Autistic Society they may be able to link you with an expert locally.

 

Barefoot

[~Jonathan~]

I just hate the idea of having an ASD. I feel shame for saying that but it's like being in a prison I won't ever be able to get out of. I seem to spend my entire life when around others trying to behave and do as others are just so that I'll pass muster but I always feel awkward and long-limbed and don't know what to do with myself. I've been told I hold myself wrong many times now. With Avoidant Personality Disorder, there's the sense I can get better and move on from it and it's true, a lot of the behaviours are me but the reason I avoid is because I'm awkward in social situations, that I'm going to be found out, that people are going to realise that I'm acting, that what they all take for granted and do naturally is so very difficult for me. The reason I'm writing this is because the friend of the family caught me stimming the other day. I've heard the term and know what it is but never thought I did it but I do and have done for years and not realised it, it's something I do when under stress or in social situations, it's a behaviour that when I act out makes me feel better about myself and everything else.

[bid]

<'> <'> <'>

 

So sorry that you are having such a difficult, confusing time

 

I've been referred, and it's been a roller-coaster of emotions for me...including realising that I have always stimmed, but because it's quite discrete I never thought of it in that way!

 

Hang in there <'>

 

Bid <'>

[barefoot wend]

Jonathan

 

You are a GREAT person whether you are NT, have Avoidant Personality Disorder or are on the spectrum. NEVER forget that.

[~Jonathan~]

<'> <'> <'>

 

Thanks everyone. Lately has been a very difficult time for me in many areas, I live in near constant denial about all sorts of things. I feel swamped

[Flora]

Jonathon.

 

Don't feel ashamed because of that <'> Your post almost made me cry. What you need is acceptance no matter what label anyone happens to give it. You don't have to have a label of anything. Just try and accept you for yourself. You need a good dose of friendship from people who don't care if you look awkward or say the wrong thing or stim to relieve your stress or if you have a thousand labels. You're a lovely person, and that comes accross very strongly in your posts. You sound gentle, kind, and friendly and those qualities are not affected by a label or no label. I wish I could say more but don't want to sound all 'hollywood' !!!

 

Lauren XXXX

[bid]

I really know that feeling

 

You will get there, though! <'>

 

Bid <'>

[~Jonathan~]

<'> <'> <'>

 

Thanks Lauren

 

And thanks also bid

Edited May 22, 2006 by ~Jonathan~

[mel]

jonathon <'> You are what you are, Just be yourself, like lauren said, you do sound gentle kind and friendly. be yourself and anyone worth having around you will accept you for yourself.

<'> <'>

[Richt]

I'm coming in very late on this, but would like to offer my support at a very difficult time, because the site was down yesterday I couldn't post, and I guess it would have been quite different, but now I've had time to reflect on my own experience, perhaps it will help?

 

A quick reminder (I've mentioned it all before) but the death of my mum last August got me thinking about who she was (definitely ASD) and who I am (yesterday a psychiatrist agreed I was ASD) I dunno about the quality of the "diagnosis" in fact he told me he wasn't happy to go the whole formal hog because at 40 I've learned too many coping strategies and do I really need it? But he was convinced that I had Asperger's.

 

24 hours on, I agree with him. He didn't tell me anything I didn't know and his re-assurance allows me to do the next bit of work in my head.

 

In some ways it's like sitting under a chute that drops pieces of an infinite jigsaw onto your table randomly. Sometimes you get pieces that match and can fit them together, so you begin to see the picture - maybe. Most often you are surrounded by bits that you can't put together. I now feel that maybe I've completed the frame, all the straight bits are out of the chute and I've joined them. I can now get on with my life, understanding why it might be different to other people's. Who knows what the future will bring, no doubt there'll be sad times and glad times, I'm not saying that a professional "diagnosis" (especially at my age) is a panacea, but it alters your focus - and that's what matters.

 

Labels aren't good, but understanding is, the complex thing is understanding and making sense. Some how you need to get to a point where you know the ladder is there, it's your ladder, to climb as you will and make the most of your life as only you can. Everyone fits in somewhere, they need to find the right ladder to get there.

 

Sorry if this seems too looney but it makes sense to me.

 

R

[~Jonathan~]

<'> Richt <'>

 

It makes perfect sense, thank you

[littlenemo]

When i first looked at this thread, it shook me up a bit as social interaction is a major problem for me too. Like Richt I'm in my forties and don't have a formal diagnosis, just a 'nod and a wink' from the psychiatrist. "at 40 I've learned too many coping strategies and do I really need it?" kept going round my head (i brought it up on a thread here, but it was the wrong time and wrong place (social interaction problems again )).

The first point is that we learn coping strategies - it might be harder than for NTs, but after a while it becomes second nature, allowing you to get on with life. And it does generally get easier over time.

The second point is that you don't need to label it, but it helps to understand what makes you different for better and/or worse. In the end understanding AS helped work out how its symptoms affect me, rather than what the label would make me.

Hopefully a better diagnosis will give you better insights into what you need to be happier. It's like having the box the puzzle came in, with the picture on the top.

Though i must admit in the jigsaw analogy it feels as if i've got two really big bits of sky (the hard parts) done, but no idea where they go!

 

good luck

 

nemo

[Richt]

Jonathan, Nemo. I'm tempted to leave it at "trust me on the sunscreen" Baz lurhmann. It's been going round my head for weeks if you want the lyrics pm me.

 

A friend of mine whose son shares my birthday and is diagnosed with aspergers asked tonight if she could tell him, (we talk a lot) I don't mind, maybe I can teach him how I coped while he's still young enough to learn? or at least set him an example of an ASD adult who survived.

 

The important thing is I got to 40, I'm doing OK, no I'm doing better, nemo has sky in her jigsaw, that is good, but also the box. Which is great. Hope, perhaps we all have the same picture and need to work together to make it complete?

 

It's never about a cure, it's always about understanding where you are, the only way to gain understanding is to talk to people, share ideas, have them debated, and always find people who really care to do it with. OK those people might change, but places like this are ideal for us to bounce off the walls together,

 

R

[kirstie]

Richt,

You have such an articulate way of putting things!

I'm sorry some situations are difficult for some, and i would never make anyone feel they weren't worth knowing.

I love the line , "we are all who we are" it's so true. <'>

[~Jonathan~]

Right, well hello everyone again. It seems I don't have Avoidant Personality Disorder at all, this has been thoroughly discounted though there are some overlapping traits, it would seem I am on the Autism Spectrum though where I don't know. My GP doesn't really believe I have anything wrong with me, just that I'm a little socially clumsy and perhaps a late bloomer whatever that means though is concerned that I'm not currently at the same level in many areas as my peers however the person who suggested I might be Avoidant Personality Disorder now believes that I was correct to begin with and that the likelihood is that I am ASD after all. I've tried contacting the local Autistic Society branch but have heard nothing back. It's been a very confusing time for me hence why I haven't been around all that much as of late.

Edited July 16, 2006 by ~Jonathan~

[phasmid]

Hi Jonathon, nice to see you back with us. It looks like you have had quite a torrid time of things lately. Still, whatever they say you have or haven't got you know you're always welcome here.

[annie]

Hi Jonathan,

 

Lovely to see you again <'> .

 

You really have had a confusing time. I hope the NAS can finally point you in the right direction so that you can get some definate answers.

 

As Phas has said, you'll always be welcome here.

 

Annie

xx

[Karen A]

Dear Jonathon.I am fairly new to the forum and so had not come across your posts until today.Just wanted to say thanks for posting here and for your honesty.I have a very complex mental health history.I only discovered Asperger syndrome last autumn when the question was raised re whether my son had ASD.He has now been Dx Asperger traits.I see some things in myself that I also see in Ben.I think it is so difficult for us as adults ASD is not like many other disorders/health needs where a Dr can do some medical investigations and give a Dx.It is all down to one professionals opinion against another.Things become more complicated if our diifficulties could be due toa different disorder.I also have changed as I have got older[now 41]so many of the things that looked like ASD have sort of mellowed.Thanks for being around on the forum and for a thread that has described the difficulties of adults wondering about Dx so well.Karen <'>

[~Jonathan~]

<'> <'> Thanks everyone <'> <'>

 

You don't know what coming here and knowing I can be myself with you guys means to me. You never cease to amaze me. You warm my heart. This is a little island oasis amid a sea of chaos and I'm grateful for your support and solidarity.

 

Thank you <'>

[phasmid]

You are, as ever, welcome.

[~Jonathan~]

Thanks mate

[barefoot wend]

Jonathan

 

Pleased to see you back!

 

Hope you find the answers you're looking for.

 

Barefoot

[Guest flutter]

nice to have you back

shame you are being messed around tho,

but on the other hand "you are you " no matter what they want to call it

}i{ x

[Richt]

Answers - give me the answers that allow me to live with who I am.

 

I'll be brutal, I am who I am, don't like it? Tough, that's my attitude. People who bother to get to know me realise I'm actually a very sensitive and caring person. Too sensitive, too caring probably.

 

However rubbish my dx was, it has allowed me to grow, I no longer spiral into negative navel watching, feel a lot better about the world and can go home at night and sleep a lot better because I'm not beating myself up about the what ifs and maybes of all my social interactions today.

 

Haven't needed to seek attention for a long time (well a couple of months) only sharing this because previously, I was addicted, I needed replies to my posts.

 

No longer feel self pity for myself (I never fit in no longer enters my head) I don't fit in with the real world (so be it) I've never felt so chilled about me.

 

It's not perfect, and I have a picture of "perfect". I can't live with my family anymore, luckily I have a job 200 miles away, they come and stay with me, I go there when I can. I work 24/7. Every day I meet with families who have everything, despite my recogition, that they are NT, sure I feel a little sad, but I'm not going to get down about it.

 

 

My name is Richard, they think I'm ASD, I think I am too, it took me until 40 to find out. It explains a lot, and leaves a lot of questions unanswered. I was talking to the ASD person (previously mentioned in my posts - same day as Karl Marx in May) who shares my birthday, last Friday we were joking about us being twins (despite there being 20+ years age difference) I said in passing (he doesn't know although his parents do about my dx) We were closer to twins than he thought. He just smiled and said he knew already ( I know for a fact that his parents haven't told him) How off the wall is that?

 

Our family is doing better than it ever has, despite the 200 miles of separation, in 4 weeks we will be on holiday together for 3 weeks, can't wait.

 

R

[Kathryn]

Hi Jonathan,

 

Good to see you back here. I hope you get the support and answers you're looking for.

 

K x