Please help

No it isn´t. She believes I need therapy based on body movement. I don´t  really understand why yet but I think it´s because she believes my emotional problems may not be related to autism. I´m going to try to disconnect from this over Christmas and come back to it then.

My most important issue at the moment is still extreme anxiety and I need to try to manage that.

I guess the crucial answer for you then, starts with whether you can see that for yourself or not.

I think I've got the idea behind your 'diagnosis', I just wonder how they tell the difference, and even the idea just seems odd. Obviously we all mimic, that's how every chilkd learns at first before reaching the age where they start to reason for themselves (at about 8, I believe) but AS people tend to get lots of practice at mimicing what we think are 'acceptable' or 'expected' behaviour. That's why 'new' situations can be so terrible, we easily fail to understand what is appropriate speech, behaviour, and conversation for that place/time/location.

So, if they're saying that you're not on the spectrum but only mimicing the beahviour of an AS family member, then surely that means that you can unlearn those behaviours. Is that what they're offering now?

It´s a final diagnosis after some extensive testing. However, after reading the report, I scored quite clearly on the spectrum in most things, apart from the specific verbal therapy with the psychologist. So, my questionnaires, tests and some family testimony put me more or less on the spectrum. However, her observations of my specific behaviour talking to her swung her opinion the other way. I may be wrong about this, but it´s how I´m reading it right now.

I get that description - I'd pretty much got it from the title, but couldn't believe that it might actually be a diagnosis. As I read it, it means that you are the product of an environment created by one or two AS people (parents, parent/sibling) and are copying their behaviours and thus 'presenting as' AS, rather than actually being on the spectrum..

I find that as odd as I find the concept of 'mild/severe', 'high/low function', etc, that is to say, it doesn't make any sense to me. I'm astonished that someone could be considered able to learn to behave as we do, when they can't be considered to be thinking, experiencing and reacting the way we do.

In your shoes I think I'd be bewildered by that, it would certainly set my head spinning. I'm not surprised that you disagree. Do you have more assessment to go, or is this final?

I hope it's an 'initial asessement'!

I´ve been diagnosed with Broad Autism Phenotype. Not sure what that means exactly yet, or whether I agree with it, but it´s something to work on. Fromwhat I´ve read so far, I can understand where the psychologist is coming from, but I´m not 100% sure I agree with it at the moment.

Well I explained everything to the doctor yesterday and she signed me off for two weeks yesterday without me asking her to, and said I should probably take more time. I´ve had a lot of concerned questions from colleagues but I don´t want to tell them anything just yet. At least I can relax a little better now as this is a weight off my shoulders.

I told one person in work, in a jokey way, about the first time I did the AQ questionnaire but after a later comment from her along the lines of ´Aren´t you taking this autism thing too far?´, I haven´t mentioned it again.

Its really difficult to think clearly so I´m best just avoiding any stressors.

I´m also going to try talking to my father tomorrow as I got mixed messages from my mum about my childhood. She thought I was very sociable but I remember it slightly differently. My one concern is I´m making up memories to fit the diagnosis. After all, I am just after the truth about why I am like I am, I´m not after a label that fits.

Being well behaved fits with autism because we are often literal and strict rule keepers. However, if the rules aren't applied consistently or fairly then we can get rebellious. If the environment means that things are structured and sensible then you are likely to manage well. If you find that rules are being broken selectively and people are behaving irrationally then you might struggle and become difficult.

You are worrying about whether you have answered the questionnaire honestly. (perhaps a sign of trying to be too literal? We also struggle with being too honest to the point where we can't even tell white lies) There isn't a right score for you or anyone. The scale indicates a likelihood and you are in the range where autism is considered likely. Try not to worry about it - I know that is easier said than done!

With regards to work. Look after yourself and don't strugggle to breaking point. Is there anyone at work that you consider to be a "best friend" that you could confide in?

Thank you again everyone for the comments. They are a real help.

Firstly, I was always extremely well behaved as a child. The thought of being disobedient was abhorrent to me. I have heard that children on the spectrum are often quite wayward in their behaviour but that wasn't me at all. I was just quiet.

As for work, they do not know I am going through diagnosis. I guess going through it doesn't mean they will tell me I am on the spectrum so I wouldn't want to bring it up yet. However, I clearly have an issue there and am taking avoidance strategies. I really should not be managing anyone at the moment because it is not fair on them and it is not fair on me.

Finally, I have one more question. I have completed the AQ questionnaire a few times now. My answers sometimes vary because I think they vary very much according to some situations. I dont score really, really high but I always range from about 31-38. But then I think some more and I wonder whether I am really answering any of them fully correctly. Does this sound right? This may be the confusion and mixed-up thoughts playing with me though.

thanks again everyone

Just writing to support what CC and GM have said. Diagnosis has helped me massively. It is like having the secret key to unlock a puzzle that I didn't know that I was locked inside of.

In the short term I agree with gingerman's suggestions of ideas to displace the racing thoughts and anxieties that are likely to be running loose in your mind. I had plenty of those to begin with as I was highly stressed and didn't know what to worry about. My personal favourite displacement activity was to go cycling whilst listening to podcasts of radio programs such as "The Life Scientific" on Radio 4. The content was sensible enough and challenging enough to make me think about something new. The exercise is also good for relaxation and feeling better.

Having a diagnosis isn't magic, and as CC says it is hard work to adjust and learn new ways of living, but I have absolutely no regrets whatsoever about going through the process.

Does your work know that you are going for diagnosis? As you say, having management responsibilities is likely to be difficult - particularly if you are going through this turmoil. I have tried management in the past (pre-diagnosis) and am now thinking about taking on some managerial responsibilities again, 18 months after diagnosis, but I was in no state to do this whilst going through the trauma that often precedes diagnosis and the period afterwards when you learn to adjust.

I agree with gingerman about positivity. I didn't mean my story to be emotional as such, I just wanted to present the utter contrast between the undiagnosed and then the diagnosed me. I know that your head is scrambled - I've been there too so I hope you know how sorry we are that we can't stop it, but we get it and we're with you all the way, shoulder to shoulder. You are not alone.

I've spent (and am still spending) a huge amount of time looking back at my life from a completely different perspective, and that's what I was trying to get across. I can't change my past, but I can certainly see it differently now that I know why things were the way they were. It's very hard to take sometimes, and I often feel like the hurt and confused little boy that I never grew away from, there's some powerful memories there.

But, and it's a big but, since getting my diagnosis, or as I prefer to think of it, since finding out who I am and who my community is, I've finaly got soemthing that starts to answer all those torturing questions that have haunted my life.

Having been given the power that my diagnosis handed to me, I've had to take responsibility for applying this new perspective of course, otherwise I'd just harm myself with a bitterly vengeful mindset, and that was never the point. I also have to consider what a difficult child I was to understand and deal with, and there are plenty of parents of AS children on here whose posts have helped me to understand that.

Understanding and forgiveness are freeing me from those harmful people and events, and I see nothing but good and positive things in that for me. I won't pretend it's easy, anything but, it's bloody hard work sometimes and exhausting too, but my reward is to gain peace of mind from things that previously just went round and round my head with no resolution - those 'torturing questions' I mentioned earlier. Now when tehy crop up, to some of them I can say 'Stop! No more'.

That's my positive message, hope I've made sense.

p.s. I love writing songs and making music, my only instrument is my pitch-perfect voice. I always wanted to be able to play the guitar, and I'd love a studio but I'll never have one - you've made me very jealous. Isn't it funny that we sometimes only see what people have that we want, but don't see what they have that we wouldn't touch with a bargepole? LOL

i am glad my post was a help. 

i am not a fan of the meds myself.  one of the reasons i resisted help for many years.  however they do help, just to get a sense of control, however limited.  plus i have to take several meds for COPD, so its just another part of a routine.  i would just say do not be afraid of the diagnoses, in the long term it can only help, once the initial shock sinks in. 

the only changes you will make will be to make you live your life in a more positive manner, i do not have to feel guilty as much for being different, i know why i am different.  and i am not alone, and for me that is a good thing, and i am not crazy, or horrible or a freak.  i am autistic, and that is a good thing.

the home studio sounds interesting, a good way to focus i guess.

stay positive, and enjoy christmas with the kids.

Thank you Classic Codger.

That´s an emotional story to read and I can relate to a lot of things you say. It did jolt me a little when you referred to a wasted life. I´ve spent all my life, achieving and failing in many things, but underneath everything I´ve just wanted to be at peace and if it turns out that I am on the spectrum, then I will look back with doubt over many choices I´ve made. It was actually me who iniated the diagnosis procedure because I did the Autism Quotient questionnaire, just out of boredom more than anything else, and scored high enough for me to have a second go at it. Then, thinking about my answers more carefully, I scored even higher.

I just have a whole mismash of thoughts and emotions going through my head. I always kept a lid on things before, although there was the occasional meltdown, but now we´re in the process it´s become increasingly difficult to keep things inside. I have anxiety about being diagnosed, about not being diagnosed, I´m watching all my behaviour instead of just getting on with things, and basically I should really just take time-out.

It makes me happy to see how you´ve progressed and I take heart from it. However, right now I can´t really think straight about much at all. Thank you anyway though, it means a lot to me that you took the time to reply. To Gingerman the same.

Martyn

Hi GuitarMan. I was going to respond to you in much the same way as gingeman, but as he's said it all already, I won't bore you with repeats.

They wouldn't be bothering with the diagnostic process if they didn't have good reason to. However, I would really like to offer you some positives and hope that they help with the intense anxiety that I know you're going through. It was the same for me, so if I just relate my own experience, perhaps you'll be able to identify something that helps. Hope so anyway.

When the suggestion was first made to me that I might be on the spectrum, I had absolutely no idea what it meant. It put a wehole new unknown territory into my world - the very thing that causes so much anxiety for AS people! There's irony... My perception of autism was that of a severe disabiltiy, but I had not even the slightest knowledge of the condition, and I certainly never even considered it to be me. My brain went into scramble because I just couldn't handle the many strong thoughts and emotions that the suggestion engendered in me. I chose not to research the condition and just let the diagnostic process happen, and I'm glad now that I made that choice.

I struggled all of my life with so many things. The strange thoughts, the complete bewilderment as to why, when I copied other people's behaviour, I got nothing but trouble for it, my record of broken relationships (of all types) and constantly losing jobs for reasons that were beyond me, my absorbtion with with subjects that people didn't understand but were perfectly logical to me. My own Mum constantly telling me that she never understood me or the things I talked about, and being treated by my family, both close and extended, like some kind of dangerous alien - the rejection was excriciatingly hurtful and I never understood why people who were supposed to love me enjoyed hurting me so much with their casual cruelty.

I spent much of my childhood wondering why my real parents had dumped me with these awful people - I just couldn't work out what I'd done that was so bad that I was a reject. When I say my childhood, I'm talking about the entire period up to my diagnosis at the age of 59...

I'm still going through the process of learning about me since then, but the diagnosis gave me an explanation, a sense of who I am, and a community to talk with, finally, who 'get' me. It's been overwhelming at times, but also comforting to know that IT'S NOT MY FAULT. Having spent my life understanding that everything's my fault, I still can't get used to the idea that it's my difference, but I like to think I at least know what my starting point is. Nothing I've said here is either unique or unknown, but I never knew that before! My isolation is over.

I'm crying a little as I write this, the mixed emotions are starting to overwhelm me. It's sadness for a wasted life, it's happiness to know I'm not alone, it's sadness that the close, loving person who always accepted me and cared for me died without knowing the answer, but happiness to be able to know that her faith in me, often in the face of aggressive opposition, was justified. I have chosen not to share my diagnosis with my wider family - they'd argue that I'm just a bad piece of s**t with a new excuse and they neither deserve me nor the truth about their own behaviour. I don't think they're nice enough or inntelligent enough or mature enough to admit just how wrong they were, and I need NONE of these things from any of them. They are my biological family, not my real one. My true life has begun.

So, following diagnosis (I still boggle at it!) I at least know why my past was as it was, but more importantly, I have a future that doesn't hold more of the same old crap. I've found myself less dependent on drink and drugs (legal or otherwise) to the point where I'd rather not do either - I don't need a fog-shield so much! And by seeing myself in a new way, reading and talking with others on here, and learning that it's OK to be me, I've found a place inside where I am more at peace than I've ever known before. **** the begrudgers.

I'm sorry for what you're going through, but please let me reassure you that you will have answers. I'm glad that you have a supportive partner - she deserves an explanation too, and I suspect that, like me, you'll discover a new relationship with your children. If there is any downside to diagnosis for me, it is that it didn't come sooner so that I, and those who loved me, never knew this before when it could have made such a huge difference. Embrace it, I say, it has many positive aspects that can change your life for the better. The anxiety levels you are experiencing are typical, but not confined to, AS, but either way they will subside. I hope you can find the strength to endure, and please understand that we know what you're going through and stand at your side, all the way.

Sorry this is long, but I pray that you've found something in here to give you hope and encouragement.

Hi Gingerman

Thanks for your comments, support and suggestions. They are very helpful.

I´m a bit better this morning although I now have peace and quiet. Any stressors could make things worse again. I´m particularly paranoid after calling in sick to work last night and having to let some colleagues know this morning. I don´t have a great sick record and thinking about it doesn´t help. I´ve also recently taken on line management which I realise now is a big mistake but I´m not sure how to go back on that. There is a potential confrontation coming up there and I don´t like it at all.

I´ve never been a fan of taking meds, but just as a personal choice. I don´t like the thought of getting them wrong and causing more problems for myself. Also, I don´t know if they would address the root cause of the problem. However, I´m wondering whether to change my mind considering the levels of stress I´m experiencing right now.

I´m also not 100% sure how I feel about diagnosis. I´ve always been searching for solutions to myself and if it turns out I´m on the spectrum then I´ll have to make a lot of changes to make my life more manageable. At the moment I can´t see how that is going to happen. One step at a time I guess.

A positive is due to having kids, as my life generally revolves around a strict routine, for which the only stressful bit is not getting any time alone. I tend to herd my kids around like cattle, barking out orders and getting them to do things straight away. My eldest is beginning to rebel a little against this, but I do also make time to spend with them at the end of the night.

Ok, I´m a writer without a cause now. I shall go and make some music in my studio and see where that gets me. Thanks for reading.

hey guitar man

hang in there.  Im afraid there is no miracle cure, I have been there myself, infact i am still unable to work, and it has been over a year now.  I was diagnosed with AS in November, which was a huge relief.  To me it sounds very similar to what i go through.  And i am getting some good help now.  I do take drugs for my anxiety, which, like yourself can be debilitating, and that helps, a bit.  when i get really bad, i have to go to bed and try and switch off.  i have a couple of techniques that work for me, they may not work for you. 

if i can, and feel well enough i walk, with my wife who i am pleased to say is very supportive.  i cannot always leave the house, so i listen to music, with headphones, calm relaxing music, nothing aggressive or sad,  i find Pink Floyd, Anathema, Steven Wilson, Mike Oldfield, Chopin, Bach all help, for me.  also cooking helps, focusing my mind on preparing food calms me down,  infact i get so focused on it it is like i am in a dream.  and finally i find reading helps, again it directs my attention away from the anxiety.

as for the stimming, do not worry.  yes, it does look odd, i do it a lot, but it helps me.  in stressful situations it does increase, and i am not always aware of it.  my wife tells me i do it in busy shops, i even do it watching tv.  there was an excellent article about stimming on the current autism magazine.

I hope this helps, remember, you are not alone.  i hope the diagnoses comes soon and you can get some help.  things can and will improve.