Countdown to diagnosis

I can't seem to edit my original message so I'm adding an update in the thread. The feedback was that I do meet the DSM-5 criteria and I have got a diagnosis of ASD.

We had a useful discussion about things I can do now to reduce anxiety levels, ways of working on relationship issues, and what to consider in relation to work.

I am going to get an email summarising today's discussion with the action points we discussed. I also asked for a brief letter confirming my diagnosis I can show to my GP and employer. The full report will follow in a couple of weeks.

My husband came into the meeting after the first few minutes. I thought it was easier for him to hear things straight from the psychologist rather than me relaying the information to him afterwards.

I came away from the feedback meeting feeling much more positive. A big part of the strategy is to help me recognise building blocks of anxiety, reduce miscommunication and plan activities to minimise the risk of going into meltdown or burnout.

Thank you everyone for being so supportive while I have been going through the assessment process.

Good to hear you got the answer to the questions you were asking yourself. This will probably get you asking more, but just my take, don't ask yourself too many. You are now diagnosed autistic, just remember, more importantly you are still yourself first. Not being preachy, but from posts here, and from personal experience, there can be a little bit of a fallout. Hope it all is a positive experience!

Thank you. That is good advice. I am glad to have had a few weeks to come to terms with the idea of being autistic. Although I always had a feeling I might be (and indeed wanted to be diagnosed) it throws up issues. 

Something I do need to consider is this. Knowing what I now know do I continue with my existing employment in the hope that adjustments can be made, or do I put my energy into finding a benign working environment? 

I think I will start a separate thread about this, as others here seem to be in a similar position. Yesterday's feedback made me realise that the way I see things is different to most people. Perhaps a working environment where I can be myself safely is an impossible dream. 

Glad to hear you had a good time!

Sunflower said:

Makes a lot of difference being self aware and conscious of the need to manage stress and energy levels.

That's something I'm struggling with at the moment. I've got anxiety, and for about 20 years I was basically drunk or high to manage life. I'm sober now, but it's a bit of double whammy. I know the things that stress me or overload me, but I've also lost my "toolkit", so to say. Sometimes I get a bit too vigilant. I'll get there but, ***, it's hard at times!

Thank you! We had a lowly time. I took some quirky objects in my handbag for my grand daughter to look at. That was a good distraction for both of us. I sat in the corner where there was extra space. It was very noisy but I popped out to the campervan a couple of times to fetch things which gave me a break. Sat quietly when we got back as it was a very long day - six hours in the campervan there and back. First social occasion since my diagnosis. Makes a lot of difference being self aware and conscious of the need to manage stress and energy levels. 

Yeah, it's best to just see how thigs pan out, and not let autism affect every aspect of how you approach your thoughts and actions. Just try and still be the same old you if it is time. Sounds like you picked a nice activity to put things out of your mind for a while. It will be hard comimg to terms with things but after so long coping with it, I think you know what it affects, best not to let it bleed over into things that it never did, imo anyway.

Hope you had a great day out!

Very sound advice! I am seeing my two adult children, their partners and my grand daughter later today, so I'm going to try and switch off my hyper focus on autism and enjoy having lunch with them. It's a dog friendly pub which is great as Izzy will be there too. She actually played for a few minutes last night, wagging her tail while she did so. Izzy first came to us on 25 August so it's taken about 3 months for that to happen. She's snoring away in her little bed now. I love having her sleeping next to me. When she first arrived she would get into a panic in the night and I could just reach down and stroke her for reassurance. These days she is sleeping quite well. I have invented some puzzles for her to solve when she gets bored and that is helping to settle her down. I love watching her solving problems like how to get a treat out of a cardboard tube! 

Sunflower said:

Now exhausted with far too many thoughts crowding my brain. 

It's useless doing that to yourself. You sound like you've got it in the right hands, and there's nothing you can do about it. I do that to myself sometimes, more than I'd like, but I have a rule now. If it's outside of office hours, or I've already done as much as I can, then it's time to rest. Doesn't always work, but I try!

My mom worked in a Mental Institution for years, as a cleaner. She used to tell me of some of the injustices that went on. There were quite a few elderly patients that had been admitted in the 30's and 40's as children for having things like epilepsy. They had become institutionalised, and often picked up behaviours from the other patients, which left them inside. There were lots of patients that shouldn't have been there.

Sunflower said:

i'm feeling a bit abandoned by my parents. We had a long chat on the phone last weekend that I thought went well. They asked why I was autistic and I said it was almost certainly genetic. It is very clear to  me now they are both autistic. 

I did warn you of it, this is going to be a rough time. You will read into things, and see autism everywhere. Autism has many more factors than genetics. The truth is there still isn't an absolutely solid cause. My dad has strong traits, very strong. I can't put the ball in his court though. All he did was have sex, and get my mom pregnant. He had no control over it, neither did my mom.

The best way to look at it is that we have it. Plain and simple. Even if it is totally genetic, they had no play in it. I understand the feeling of needing an explaination, but it just is how it is. You may feel distance, you may feel lots of things. That's that thing of the fallout. You need time for it to sink in. Forget why you have it, how it came about, and who may be responsible. We may never have the answers, I'm not waiting for answers I may never get.

You will see autism in everything at first. Don't dwell on it. The best thing is to prioritise practical things that will help you move forward. Best not to get caught up in the things you can't ever answer, or do anything about. Accept what you can't do anything about, address the things you can work with.

Sunflower said:

Fry's dog in Futurama - now that is just too sad! Reminds me of Greyfriar's Bobby who my last dog looked like:

You sure know how to pick 'em, and take good pictures. Both of your dogs are cute as ***! Fry's dog in Futurama, Greyfriar's Bobby, both Hatchiko films. All of them are things I can't watch. Longing, sadness, love, loyalty, and dogs. A powerful concoction! 

Fry's dog in Futurama - now that is just too sad! Reminds me of Greyfriar's Bobby who my last dog looked like:

My dog is asleep on my lap after a long pacing and whining session. She may have picked up on the fact I'm not feeling great tonight. She's probably just tired. I got really frustrated with my Union earlier. Just needed advice about an Occ Health meeting on Monday and got passed from person to person. Eventually got a phone call at 7pm when I had given up hope. Now exhausted with far too many thoughts crowding my brain. 

When I was a teenager a girl in my year at school developed schizophrenia - we were about 15. I used to cycle up to the psychiatric hospital to see her after school. I was appalled that she was on an adult ward heavily sedated with a flimsy curtain round her bed. Her mother had pinned a picture of Twiggy on her bedside locker because she thought she was getting too fat. 

I volunteered in the long stay wards at the same hospital playing cards and dominoes with the old men. It was a terrible place. Years later I made a documentary with a woman who had been a patient there from the age of 14 after falling off her bike and getting a head injury.

i'm feeling a bit abandoned by my parents. We had a long chat on the phone last weekend that I thought went well. They asked why I was autistic and I said it was almost certainly genetic. It is very clear to  me now they are both autistic. 

Perhaps at some level they know it too, but don't want to know it. To be fair they did send a nice email after we spoke. But then the phone rang yesterday  - I could see it was their number but it stopped after two rings - they probably rang by mistake. They never phone me. Not sure why this upsets me so much.

If we hadn't adopted Izzy I was going to consider fostering dogs when the owners go into hospital or refuges. There are several schemes like that now. I can't really cope without a dog after years of being with one. Somehow it makes me complete. Fell head over heels for Izzy and now  I am dreading going back to work. 

Off to look up Fry's dog in Futurama.... don't know that film but probably should! 

No problem at all Sunflower.

Sunflower said:

Sensory intensity, along with anxiety, are probably the most obvious features of my autism.

Me too. I have hyposensitive symptoms too. I don't feel a lot of pain, but something like a stiff label in a T-shirt will feel like hell. My senses are fucked, the thought of something starting the sensory rollercoaster basically makes me *** myself. The anxiety and the sensory stuff play off one another. A vicious circle. I too have been trying, and sometimes finding strategies to cope.

Sunflower said:

Feeling I was going mad sums up the last few months.

It sums up about the last 30 years of my life! My grandfather, and my dog died around the same time. I was very close to my grandfather. Both of them were sort of a refuge for me. Very calming influences. I could talk to my grandfather about anything. He'd done so much in his life, and was never judgemental. As for my dog, I never shouted at him, he never shouted at me. I'd just come home, and we would be happy to just see each other.

Sunflower said:

I knew a woman who spent years locked into a catatonic state,

I was talking about my cousin the other day who suffers from Schizophrenia. She often goes into a catatonic state, that's when you know an explosion coming. She was telling me when she was having a pretty lucid period, that when it happens she "sees hell" and can't move. She gains her movement and snaps back into a more normal place in the blink of an eye, but she said it's like a drowning person getting up to the surface. All of the panic comes out at once. I've got quite a few Schizophrenic relatives, and with my ASD, plus Synaesthesia to boot, I always thought I'd be diagnosed with Schizophrenia one day. I kind of digressed there, but I just thought of how my cousin is, and the fear of madness. I think that not knowing what was up probably worried you too. I'm glad to hear about the bond that you and your dog are sharing.

I was thinking of getting a dog, but it doesn't seem fair to the dog. I'm not too good mentally at the moment, and it just wouldn't be fair on the dog. I couldn't walk it regularly and I couldn't do that.

Your dog is really cute! He reminds me of Fry's dog in Futurama! I just get a lump in my throat thinking about that! I better shut up. I don't want people thinking I'm a softie!

Thank you Cloudy Mountains. I had expected strange psychological things to happen post diagnosis, but when I got up yesterday I was incredibly dizzy and my head was spinning. I decided to take Propanalol my GP prescribed a few weeks ago and soon felt OK again. 

Sensory intensity, along with anxiety, are probably the most obvious features of my autism. Over the years I sometimes used a sensory diet at times of crisis, without realising I was doing it. I am considering doing this in a more deliberate way now. 

Feeling I was going mad sums up the last few months. On previous occasions I always managed to ride out the crisis, but this time it was different, probably because my elderly dog had died I consider myself so lucky that this episode ended with autism diagnosis and finally feeling understood. 

I knew a woman who spent years locked into a catatonic state, mute and cut off from her family after an episode of bullying at work. Her little grand daughter finally reached her and sparked her recovery by saying: "love is the key". My rescue dog and I are both in the overcoming trauma, learning to trust the world and play again. We have an incredibly strong bond - love is the only word that describes it. 

Yesterday I worked out a way of getting my dog to pick up a toy. I put treats in a Tupperware container, then I put a toy on top. She had to pick up the toy to get the treats! It is lovely to watch her wagging her tail and running around full of energy - soon I hope to be doing this too!  She sleeps next to my bed at night and sensing her close to me makes me feel safe. 

I don't know about autistic people being optimistic, people in general are a mixed bag, but one things for sure, if we apply ourselves to something, autistic people have a whole lot of focus. I think that our brains can eat us alive at times with that focus, if it's channelling itself negatively. Channelled correctly it's a very powerful tool to have at our disposal. Sometimes it feels like I've got more than one brain, with all of the thoughts running around, but it's not ideal because I've only got one skull! When there's something that makes all of that energy go into one place it's such a relief. If I focus it into despair, which I can, it can become an odd source of comfort. That's not ideal. Placing that focus into something positive, or even inane, can be a great thing.

I know personally for me, if there's a problem, it's best to address it. Negativity affects the person who's having it piled on them, the people around them, and even the arsehole in the scenario! It brings out the worst in everyone emotionally. When the situation is over, regardless of the way it ends, explosively, with civility, or just a fade, everyone feels better. It can even do the arsehole good. 

As you say you've got through dark times. Now is a time where there has been a lot of light shone in, use it, and don't lose yourself. There are a lot of ways to lose who you were before the diagnosis, but I don't think that will be the case.

Sunflower said:

I feel much more confident now I know I really am different to most other people.

Speaking personally, I don't mind if I'm different to people or not. I just got to know that all of the things that I thought were going to crush me weren't. My sensory problems are pretty intense, and I thought all of my life that I was going mad. That was the thing that I needed from all of this.

Stay positive!

Thank you so much for this. I read somewhere that autistic people often have an incredible abiiity to deal with adversity and remain optimistic. I have certainly got through some very dark times in my life. I feel much more confident now I know I really am different to most other people.

I have started applying for other jobs and looking into self-employment. This will give me an escape route if I need one. As well as being an intrinsic part of who I am being autistic is actually an additional qualification!  

In my experience, if you just keep going, in spite of not being able to see a path ahead, a way forward will open up. 

No problem whatsoever, Sunflower. I think that you are taking the right actions yourself. Being proactive always helps quell the fears that can take over when we don't make that leap. I think that it will be far more beneficial whatever the outcome. ASD can be a fertile ground if there are seeds of doubt planted.

Well I think you have had some great luck there! Having someone in your corner who "gets" it all, is an amazing stroke of luck. You taking the bull by the horns has led you to a pretty good place by the sound of things!

I think reading through Lonewarrior's, Jonesy's, and your last few comments, that there is light at the end of the tunnel. Things tend to iron themselves out in ways. There are good people out there too.

Best of luck with it all, and I think you will be OK.

) ( said:

Imagine working only with men!

Trust me LW, women are no better. I worked with a whole floor of women at one place. The behaviour was vicious. The bullying was far more duplicitous, cold, and calculated. I'm not saying that men can't be as equally bad, but if it was out and out social bullying, and mindgames, they'd honed it to a fine art.

The section I worked on was ran by three older ladies who were very, very, bitter towards younger ladies, some were basically girls. 17 and 18 year olds. They were so cruel towards them, I think because they were younger. Some real insecure shallow ***. They'd also work out who had more to lose by being in trouble, or not getting their contracts renewed. If they heard in a passing conversation that someone was in debt or struggling, they would turn the screws. It wasn't the chest beating, ritual mating dances, that men do. It was meticulous. There was one woman manager there that was admittedly a "sex tourist", divorced, and absolutely vile. There was a guy who was from Jamaica who was trying to get citizenship, he was a really nice guy, quiet, good looking though, she propositioned him for sex, and told him she'd get him fired if he refused, as he was still in his probation period. He refused. He made a complaint, and it wasn't even looked into, because she was pally with HR. Sure as ***, he was fired. She knew it could have jeopardised his application. There was a culture of caste ranking in the Indian girls. That was vicious. They picked on all of the Dalit girls. It all ended when a guy who was a higher caste, pulled rank on them, he hated the caste system, but the two main culprits never did it from that day. I don't know what he said, or how much status he had but they wouldn't even look at him from that day. We were going to report them all, but he said not to, because they'd turn it into a race thing. He'd sort it out. I could go on and on. It was a nest of vipers. 5 men and I'd say 40 plus women. I got out of there as quickly as I could.

) ( said:

At break times they are either discussing sport which invariably means disagreement as to who is best, or the worst thing watching videos on mobile phones, They go looking for the most extreme video possibly  in some kind of attempt to prove how strong or extreme they are?

I like a bit of sport but not as far as it to turn into a bone of contention. I know the kind you are talking about, the "tough guy by proxy". They had a guy who was in with some guy that all the other guys at work were in awe of, an ex-criminal, he'd always say to them "I know so and so", and "I was with". I fucking hate it when grown men are fanboys like that. I knew the guy too, he's actually a quiet guy now, and not the type to mix with the guy who was talking all of the rubbish he was. What does who you know have to do with anything, lol. We are grown men! That stuff grates on me. We got into a disagreement over some invoices in the warehouse, he started being threatening, and started talking about the guy. "I know so and so", I said "Is he here now? Here phone him", and gave him my phone with his number showing on the display. He went white, then walked off. He didn't mention him again. From that day on people thought I was some kind of tough guy. What a pathetic bunch. The guy was just someone I talk about history and comics with, been friends since school, he's as nerdy as they come by the "mating dance ritual" crowds standards. Far from a chest beater. I've worked with some real planks. I'd be here all night. I could go on and on.

) ( said:

I told him to his face. It felt good, he was stunned and thought he was a mate.

Lol, I can picture it. Loves the spectacle of violence, but just froze at the prospect of confrontation. It's like a form of LARP, or cosplay when you think about it.

) ( said:

I am not a laugh like the others, but a few do and accept me for who I am, they have respect for me and I give respect back. 

Who's to say that? Something that's funny to one person isn't to another. You might be a howl. I find that's the best way to be at work. Let people know as little as possible about me, and give respect to everyone until I see reason for someone not to get it.

Yep I used to get that one too! "Brainache" "Keeno" etc. Some men never progress past this level and there were some girls who joined in as well.

It's a thing I don't get. It's a skill, and a talent. I've seen people feign ignorance, as not to step out of the mold. You know that they know much more than they do. I went to junior school with a girl and she was really clever. She went to senior school and pretended to be the opposite, just to fit in. I'd get so frustrated with her. She got her degree this year at 40. She said "I had to do better, I wasn't happy". She saw me start laughing and laughed herself. I think that she knew what I was thinking. Good to see she beat that mindset though. Nice girl.

Really good advice, I am leaving it to my union rep to discuss Absence Management Interviews. She said that Occupational Health will advise on any ASD related adjustments needed for my return to work.

I am incredibly lucky that my Union rep is very well informed about autism through previous employment. It is refreshing not to have to explain everything from scratch. It is helpful having the Union as a buffer between me and a stressful work situation. 

Thank you for giving this such careful consideration, and for making such helpful suggestions. 

) ( said:

Some try to make me appear to be a snob, “ oh he just thinks he’s clever and better than us”.

Yep I used to get that one too! "Brainache" "Keeno" etc. Some men never progress past this level and there were some girls who joined in as well.

Some try to make me appear to be a snob, “ oh he just thinks he’s clever and better than us”. Maybe those words when really thought about are partly true?

I have morals and standards, without them the world is anarchy. 

Thier seems to be a never ending search for that buzz, a quick fix, maybe they no longer get stimulus from playing or interacting fully? So compensate by glaring into small screens looking to feed thier emotions that way, 

The wannabe programmes aren’t helping, they are based on fail or succeed, instant success or failure.to mock or to go wild about.

 Both extremes, no nurturing a talent, no real connection to the person, focus on a tragedy or sob story. 

This kind of male behavior is only too familiar to me, its basically secondary school playground stuff taken to nth degree. I suffered from this kind of stuff at school, college and work during the 1980s as I never bought into the whole macho thing and as a consequence I was bullied (physical and emotional) and socially excluded. It was only when I started working in higher education that I found a sanctuary and other than one particular loathsome lecturer I was free from it. During the 70s and 80s I was often labelled/accused of being gay due to me not buying into the whole macho BS thing.

I may end up with no one wishing to work with me? I am not a laugh like the others, but a few do and accept me for who I am, they have respect for me and I give respect back. 

Sunflower replied. “The problem I often come up against at work is that getting along with people sometimes means ignoring or endorsing unpleasant behaviour. It's almost certainly an ASD thing to get so hung up about this. I'm well aware of my many failings but they don't include being deliberately nasty or cruel to others. I try and make excuses for people who act like this - maybe their unhappiness is the cause - but I'm not sure I can be around them too much, as it eats away at me. Ultimately I end up challenging their behaviour, usually with disastrous consequences.”

Imagine working only with men!

It feels like one long continuous lads night out! They seem to compete to get a reaction or a bit like them upping the stakes to make sure they are seen as better or equal in whatever the subject matter.

At break times they are either discussing sport which invariably means disagreement as to who is best, or the worst thing watching videos on mobile phones, They go looking for the most extreme video possibly  in some kind of attempt to prove how strong or extreme they are?

The level of depravity seems to be what gives them credibility amongst the others.

Often they will say “here have a look at this!” To which I used to say ok but look away and pretend to be interested,, it poisoned my mind hearing the content let alone watch it.

Since the realisation of who I truly am and why I no longer try to fit in.  I tell them straight. I do not wish to watch such nasty horrible things like that, I do not find it funny or nice seeing somebody subjected to such nastiness “.

They look stunned! Then say “ jeez it’s only a bit of fun mate”.

They have lost all sense of right and wrong. Constantly looking to find ever increasing extremes in order to get a buzz out of it.

This includes practical jokes that seek to hurt or cause maximum distress.

They include beatings by others say out on a Friday night! The worst by far are the videos showing sexual acts, totally sick. One once found a video showing an execution which hadn’t yet been banned. 

I no longer even work with one individual and have said I will not have him working with me ever.

when asked why I now tell them why. Because everything he does and says is to cause distress 

, He hasn’t anything nice to say and do not want his negative mind near me.

I told him to his face. It felt good, he was stunned and thought he was a mate. 

I speak my mind now instead of just masking to fit. It caused me to much suffering.

long reply, no apologies it’s who I am. 

Me being me and accepting I do not have to just be what everyone expects.

Sunflower said:

Good advice not to lose myself in the midst of all this reflection. One thing I did just remember was being taught various tools and techniques to improve communication when I was a social worker. It always seemed slightly dishonest to ask a question in a way designed to elicit a certain response. Now I am beginning to think that if I do want to reduce miscommunication there are times when I may have to use conscious communication rather than being my natural, unfiltered self.

It's hard mulling it all over. One thing you've got to ask yourself is was it stressful using those techniques? They might work better than the alternative. I didn't have an idea about masking, but I discovered that the way I masked was to be goofy. I was the class clown at times, at work I'd always be goofy, and I'm goofy around my friends. It helped, I still come across as weird, but it helped me relate to people. To be honest I'm not even sure if it's a mask (see how I'm second guessing myself, even after more than two years!), I find it easy to do. It's got me into as much trouble as out of it though! If I say what's in my head all of the time though I'm sardonic, direct, and a bit too observational. Like I say though, all this stuff about masking, and the like can be a bit of a double edged thing. I can't mask my tics, stims, or speaking to myself and singing, I don't care to either, that would be far too stressful. I think it's a hard place to start at an older age. The only thing I can say is do what is going to be least stressful in the long term.

Sunflower said:

The problem I often come up against at work is that getting along with people sometimes means ignoring or endorsing unpleasant behaviour. It's almost certainly an ASD thing to get so hung up about this. I'm well aware of my many failings but they don't include being deliberately nasty or cruel to others. I try and make excuses for people who act like this - maybe their unhappiness is the cause - but I'm not sure I can be around them too much, as it eats away at me.

I'd always I think that you can only control what you do. Trying to control the situation for other people can cause more problems than it solves sometimes. I wouldn't say it's an ASD thing to feel like that, there are lots of peoole that don't like bullies, or the atmosphere they cause. That environment is draining on everyone. Don't think that other people are OK with it, generally they aren't. If you step in everytime though, it can also stop the person being bullied from finding the strength to fight back. That's a journey that some people need to walk. They find something from it. I don't have to be all pally and cordial with an arsehole either. If I find someone like that I'm going to be ice cold around them. It's my right. I look back at some of the things over my life with bullies, and they can make me become the bully. I can go quite far, too far. It's a fine line. It eats at me too, but I've had to learn to let things take their natural course, only stepping in when it is absolutely necessary.

Sunflower said:

Ultimately I end up challenging their behaviour, usually with disastrous consequences.

I can totally empathise with where you are coming from. I can become the monster, or make a situation where no-one comes out better off. I used to be a team leader for a while, and I didn't tolerate bullying. There were only two rules, the work gets done, and no bullying. Everything else was OK, the team ran itself. People generally tend to be more productive, and happy with less rules, imo. There were two ladies who were on my team, and the one was a real nasty *** to the other lady. She used to directly put her apperance down, and her life outside work. One day she was showing her a picture of her daughter, and she said "She's not a looker, is she?", that was too much for me. Apparently it made the nice lady cry. I disciplined the bitchy one, and they kept their distance. I was working late with the lady that was being bullied, and she said that she didn't like the wedge that had been driven between them. I said that she treated her like a lapdog, and she wouldn't have it. She enjoyed being a subservient punchbag. I was dumbfounded.

I quote Lao Tzu a lot here it seems, but the third paragraph sort of rings true in this excerpt of the Tao Te Ching, in the sense of those situations.

http://thetaoteching.com/taoteching38.html

Sunflower said:

If I have to use strategies and techniques to placate bullies it will simply become too exhausting. Sooner or later things will fall apart anyway, so I'd rather remove myself calmly now. I am checking my assessment of the situation with my union first, just to make sure the behaviour is unacceptable and I'm not being too sensitive or overreacting. 

I think with the way you feel, this might be the best thing. I wouldn't mention bullying, or name names, but put the onus on them to accomodate you. When you have got your feet under the table in the acceptance of your condition, then you have a stronger position. You never know it could just be part of the fallout period. I'd do as much as I can in that sense, but don't jump to any conclusions of what you are or aren't capable of. I know I've said it ad nauseum, but this will be a very strange few months for you. I'd try and keep it sweet until you know where the land lies, with both yourself, and your work situation. If you make a definitive decision at any point, that you don't want to be there anymore, then look elsewhere.

I'd just say be patient. Let everything do what it's going to around you, and work on yourself. Like I said earlier you can't control everything outside of your head, but you have to try and control what's going on in your head. That's the most important thing at the moment.

Sunflower said:

Good advice not to lose myself in the midst of all this reflection. One thing I did just remember was being taught various tools and techniques to improve communication when I was a social worker. It always seemed slightly dishonest to ask a question in a way designed to elicit a certain response. Now I am beginning to think that if I do want to reduce miscommunication there are times when I may have to use conscious communication rather than being my natural, unfiltered self.

It's hard mulling it all over. One thing you've got to ask yourself is was it stressful using those techniques? They might work better than the alternative. I didn't have an idea about masking, but I discovered that the way I masked was to be goofy. I was the class clown at times, at work I'd always be goofy, and I'm goofy around my friends. It helped, I still come across as weird, but it helped me relate to people. To be honest I'm not even sure if it's a mask (see how I'm second guessing myself, even after more than two years!), I find it easy to do. It's got me into as much trouble as out of it though! If I say what's in my head all of the time though I'm sardonic, direct, and a bit too observational. Like I say though, all this stuff about masking, and the like can be a bit of a double edged thing. I can't mask my tics, stims, or speaking to myself and singing, I don't care to either, that would be far too stressful. I think it's a hard place to start at an older age. The only thing I can say is do what is going to be least stressful in the long term.

Sunflower said:

The problem I often come up against at work is that getting along with people sometimes means ignoring or endorsing unpleasant behaviour. It's almost certainly an ASD thing to get so hung up about this. I'm well aware of my many failings but they don't include being deliberately nasty or cruel to others. I try and make excuses for people who act like this - maybe their unhappiness is the cause - but I'm not sure I can be around them too much, as it eats away at me.

I'd always I think that you can only control what you do. Trying to control the situation for other people can cause more problems than it solves sometimes. I wouldn't say it's an ASD thing to feel like that, there are lots of peoole that don't like bullies, or the atmosphere they cause. That environment is draining on everyone. Don't think that other people are OK with it, generally they aren't. If you step in everytime though, it can also stop the person being bullied from finding the strength to fight back. That's a journey that some people need to walk. They find something from it. I don't have to be all pally and cordial with an arsehole either. If I find someone like that I'm going to be ice cold around them. It's my right. I look back at some of the things over my life with bullies, and they can make me become the bully. I can go quite far, too far. It's a fine line. It eats at me too, but I've had to learn to let things take their natural course, only stepping in when it is absolutely necessary.

Sunflower said:

Ultimately I end up challenging their behaviour, usually with disastrous consequences.

I can totally empathise with where you are coming from. I can become the monster, or make a situation where no-one comes out better off. I used to be a team leader for a while, and I didn't tolerate bullying. There were only two rules, the work gets done, and no bullying. Everything else was OK, the team ran itself. People generally tend to be more productive, and happy with less rules, imo. There were two ladies who were on my team, and the one was a real nasty *** to the other lady. She used to directly put her apperance down, and her life outside work. One day she was showing her a picture of her daughter, and she said "She's not a looker, is she?", that was too much for me. Apparently it made the nice lady cry. I disciplined the bitchy one, and they kept their distance. I was working late with the lady that was being bullied, and she said that she didn't like the wedge that had been driven between them. I said that she treated her like a lapdog, and she wouldn't have it. She enjoyed being a subservient punchbag. I was dumbfounded.

I quote Lao Tzu a lot here it seems, but the third paragraph sort of rings true in this excerpt of the Tao Te Ching, in the sense of those situations.

http://thetaoteching.com/taoteching38.html

Sunflower said:

If I have to use strategies and techniques to placate bullies it will simply become too exhausting. Sooner or later things will fall apart anyway, so I'd rather remove myself calmly now. I am checking my assessment of the situation with my union first, just to make sure the behaviour is unacceptable and I'm not being too sensitive or overreacting. 

I think with the way you feel, this might be the best thing. I wouldn't mention bullying, or name names, but put the onus on them to accomodate you. When you have got your feet under the table in the acceptance of your condition, then you have a stronger position. You never know it could just be part of the fallout period. I'd do as much as I can in that sense, but don't jump to any conclusions of what you are or aren't capable of. I know I've said it ad nauseum, but this will be a very strange few months for you. I'd try and keep it sweet until you know where the land lies, with both yourself, and your work situation. If you make a definitive decision at any point, that you don't want to be there anymore, then look elsewhere.

I'd just say be patient. Let everything do what it's going to around you, and work on yourself. Like I said earlier you can't control everything outside of your head, but you have to try and control what's going on in your head. That's the most important thing at the moment.

In the past I have always resisted taking prescribed medication for anxiety, which was a bit ironic given that I used alcohol to relax or enable me to be more social.

I finally gave in after my diagnosis and started taking Propanalol. It doesn't replace the other strategies - pacing myself, trying to keep stress levels below meltdown point - but it makes it easier for me to stay calm and relaxed.

In spite of all this effort I'm still having flash points and times when everything feels like ****! Generally though life seems less chaotic and my head feels clearer. 

Sensory stuff is still heightened so even though Propanalol switches off some of the signals I am still affected by anxiety. I am trying to address the underlying causes of angst as well as masking the symptoms. 

Prior to my diagnosis I'd assumed everyone struggles with this kind of stuff. Now that I know some things really are harder for me, it actually makes things better! 

Glad to hear you had a good time!

Sunflower said:

Makes a lot of difference being self aware and conscious of the need to manage stress and energy levels.

That's something I'm struggling with at the moment. I've got anxiety, and for about 20 years I was basically drunk or high to manage life. I'm sober now, but it's a bit of double whammy. I know the things that stress me or overload me, but I've also lost my "toolkit", so to say. Sometimes I get a bit too vigilant. I'll get there but, ***, it's hard at times!

Thank you! We had a lowly time. I took some quirky objects in my handbag for my grand daughter to look at. That was a good distraction for both of us. I sat in the corner where there was extra space. It was very noisy but I popped out to the campervan a couple of times to fetch things which gave me a break. Sat quietly when we got back as it was a very long day - six hours in the campervan there and back. First social occasion since my diagnosis. Makes a lot of difference being self aware and conscious of the need to manage stress and energy levels. 

Yeah, it's best to just see how thigs pan out, and not let autism affect every aspect of how you approach your thoughts and actions. Just try and still be the same old you if it is time. Sounds like you picked a nice activity to put things out of your mind for a while. It will be hard comimg to terms with things but after so long coping with it, I think you know what it affects, best not to let it bleed over into things that it never did, imo anyway.

Hope you had a great day out!

Very sound advice! I am seeing my two adult children, their partners and my grand daughter later today, so I'm going to try and switch off my hyper focus on autism and enjoy having lunch with them. It's a dog friendly pub which is great as Izzy will be there too. She actually played for a few minutes last night, wagging her tail while she did so. Izzy first came to us on 25 August so it's taken about 3 months for that to happen. She's snoring away in her little bed now. I love having her sleeping next to me. When she first arrived she would get into a panic in the night and I could just reach down and stroke her for reassurance. These days she is sleeping quite well. I have invented some puzzles for her to solve when she gets bored and that is helping to settle her down. I love watching her solving problems like how to get a treat out of a cardboard tube! 

Sunflower said:

Now exhausted with far too many thoughts crowding my brain. 

It's useless doing that to yourself. You sound like you've got it in the right hands, and there's nothing you can do about it. I do that to myself sometimes, more than I'd like, but I have a rule now. If it's outside of office hours, or I've already done as much as I can, then it's time to rest. Doesn't always work, but I try!

My mom worked in a Mental Institution for years, as a cleaner. She used to tell me of some of the injustices that went on. There were quite a few elderly patients that had been admitted in the 30's and 40's as children for having things like epilepsy. They had become institutionalised, and often picked up behaviours from the other patients, which left them inside. There were lots of patients that shouldn't have been there.

Sunflower said:

i'm feeling a bit abandoned by my parents. We had a long chat on the phone last weekend that I thought went well. They asked why I was autistic and I said it was almost certainly genetic. It is very clear to  me now they are both autistic. 

I did warn you of it, this is going to be a rough time. You will read into things, and see autism everywhere. Autism has many more factors than genetics. The truth is there still isn't an absolutely solid cause. My dad has strong traits, very strong. I can't put the ball in his court though. All he did was have sex, and get my mom pregnant. He had no control over it, neither did my mom.

The best way to look at it is that we have it. Plain and simple. Even if it is totally genetic, they had no play in it. I understand the feeling of needing an explaination, but it just is how it is. You may feel distance, you may feel lots of things. That's that thing of the fallout. You need time for it to sink in. Forget why you have it, how it came about, and who may be responsible. We may never have the answers, I'm not waiting for answers I may never get.

You will see autism in everything at first. Don't dwell on it. The best thing is to prioritise practical things that will help you move forward. Best not to get caught up in the things you can't ever answer, or do anything about. Accept what you can't do anything about, address the things you can work with.

Sunflower said:

Fry's dog in Futurama - now that is just too sad! Reminds me of Greyfriar's Bobby who my last dog looked like:

You sure know how to pick 'em, and take good pictures. Both of your dogs are cute as ***! Fry's dog in Futurama, Greyfriar's Bobby, both Hatchiko films. All of them are things I can't watch. Longing, sadness, love, loyalty, and dogs. A powerful concoction! 

Fry's dog in Futurama - now that is just too sad! Reminds me of Greyfriar's Bobby who my last dog looked like:

My dog is asleep on my lap after a long pacing and whining session. She may have picked up on the fact I'm not feeling great tonight. She's probably just tired. I got really frustrated with my Union earlier. Just needed advice about an Occ Health meeting on Monday and got passed from person to person. Eventually got a phone call at 7pm when I had given up hope. Now exhausted with far too many thoughts crowding my brain. 

When I was a teenager a girl in my year at school developed schizophrenia - we were about 15. I used to cycle up to the psychiatric hospital to see her after school. I was appalled that she was on an adult ward heavily sedated with a flimsy curtain round her bed. Her mother had pinned a picture of Twiggy on her bedside locker because she thought she was getting too fat. 

I volunteered in the long stay wards at the same hospital playing cards and dominoes with the old men. It was a terrible place. Years later I made a documentary with a woman who had been a patient there from the age of 14 after falling off her bike and getting a head injury.

i'm feeling a bit abandoned by my parents. We had a long chat on the phone last weekend that I thought went well. They asked why I was autistic and I said it was almost certainly genetic. It is very clear to  me now they are both autistic. 

Perhaps at some level they know it too, but don't want to know it. To be fair they did send a nice email after we spoke. But then the phone rang yesterday  - I could see it was their number but it stopped after two rings - they probably rang by mistake. They never phone me. Not sure why this upsets me so much.

If we hadn't adopted Izzy I was going to consider fostering dogs when the owners go into hospital or refuges. There are several schemes like that now. I can't really cope without a dog after years of being with one. Somehow it makes me complete. Fell head over heels for Izzy and now  I am dreading going back to work. 

Off to look up Fry's dog in Futurama.... don't know that film but probably should! 

No problem at all Sunflower.

Sunflower said:

Sensory intensity, along with anxiety, are probably the most obvious features of my autism.

Me too. I have hyposensitive symptoms too. I don't feel a lot of pain, but something like a stiff label in a T-shirt will feel like hell. My senses are fucked, the thought of something starting the sensory rollercoaster basically makes me *** myself. The anxiety and the sensory stuff play off one another. A vicious circle. I too have been trying, and sometimes finding strategies to cope.

Sunflower said:

Feeling I was going mad sums up the last few months.

It sums up about the last 30 years of my life! My grandfather, and my dog died around the same time. I was very close to my grandfather. Both of them were sort of a refuge for me. Very calming influences. I could talk to my grandfather about anything. He'd done so much in his life, and was never judgemental. As for my dog, I never shouted at him, he never shouted at me. I'd just come home, and we would be happy to just see each other.

Sunflower said:

I knew a woman who spent years locked into a catatonic state,

I was talking about my cousin the other day who suffers from Schizophrenia. She often goes into a catatonic state, that's when you know an explosion coming. She was telling me when she was having a pretty lucid period, that when it happens she "sees hell" and can't move. She gains her movement and snaps back into a more normal place in the blink of an eye, but she said it's like a drowning person getting up to the surface. All of the panic comes out at once. I've got quite a few Schizophrenic relatives, and with my ASD, plus Synaesthesia to boot, I always thought I'd be diagnosed with Schizophrenia one day. I kind of digressed there, but I just thought of how my cousin is, and the fear of madness. I think that not knowing what was up probably worried you too. I'm glad to hear about the bond that you and your dog are sharing.

I was thinking of getting a dog, but it doesn't seem fair to the dog. I'm not too good mentally at the moment, and it just wouldn't be fair on the dog. I couldn't walk it regularly and I couldn't do that.

Your dog is really cute! He reminds me of Fry's dog in Futurama! I just get a lump in my throat thinking about that! I better shut up. I don't want people thinking I'm a softie!

Thank you Cloudy Mountains. I had expected strange psychological things to happen post diagnosis, but when I got up yesterday I was incredibly dizzy and my head was spinning. I decided to take Propanalol my GP prescribed a few weeks ago and soon felt OK again. 

Sensory intensity, along with anxiety, are probably the most obvious features of my autism. Over the years I sometimes used a sensory diet at times of crisis, without realising I was doing it. I am considering doing this in a more deliberate way now. 

Feeling I was going mad sums up the last few months. On previous occasions I always managed to ride out the crisis, but this time it was different, probably because my elderly dog had died I consider myself so lucky that this episode ended with autism diagnosis and finally feeling understood. 

I knew a woman who spent years locked into a catatonic state, mute and cut off from her family after an episode of bullying at work. Her little grand daughter finally reached her and sparked her recovery by saying: "love is the key". My rescue dog and I are both in the overcoming trauma, learning to trust the world and play again. We have an incredibly strong bond - love is the only word that describes it. 

Yesterday I worked out a way of getting my dog to pick up a toy. I put treats in a Tupperware container, then I put a toy on top. She had to pick up the toy to get the treats! It is lovely to watch her wagging her tail and running around full of energy - soon I hope to be doing this too!  She sleeps next to my bed at night and sensing her close to me makes me feel safe. 

I don't know about autistic people being optimistic, people in general are a mixed bag, but one things for sure, if we apply ourselves to something, autistic people have a whole lot of focus. I think that our brains can eat us alive at times with that focus, if it's channelling itself negatively. Channelled correctly it's a very powerful tool to have at our disposal. Sometimes it feels like I've got more than one brain, with all of the thoughts running around, but it's not ideal because I've only got one skull! When there's something that makes all of that energy go into one place it's such a relief. If I focus it into despair, which I can, it can become an odd source of comfort. That's not ideal. Placing that focus into something positive, or even inane, can be a great thing.

I know personally for me, if there's a problem, it's best to address it. Negativity affects the person who's having it piled on them, the people around them, and even the arsehole in the scenario! It brings out the worst in everyone emotionally. When the situation is over, regardless of the way it ends, explosively, with civility, or just a fade, everyone feels better. It can even do the arsehole good. 

As you say you've got through dark times. Now is a time where there has been a lot of light shone in, use it, and don't lose yourself. There are a lot of ways to lose who you were before the diagnosis, but I don't think that will be the case.

Sunflower said:

I feel much more confident now I know I really am different to most other people.

Speaking personally, I don't mind if I'm different to people or not. I just got to know that all of the things that I thought were going to crush me weren't. My sensory problems are pretty intense, and I thought all of my life that I was going mad. That was the thing that I needed from all of this.

Stay positive!

Thank you so much for this. I read somewhere that autistic people often have an incredible abiiity to deal with adversity and remain optimistic. I have certainly got through some very dark times in my life. I feel much more confident now I know I really am different to most other people.

I have started applying for other jobs and looking into self-employment. This will give me an escape route if I need one. As well as being an intrinsic part of who I am being autistic is actually an additional qualification!  

In my experience, if you just keep going, in spite of not being able to see a path ahead, a way forward will open up. 

No problem whatsoever, Sunflower. I think that you are taking the right actions yourself. Being proactive always helps quell the fears that can take over when we don't make that leap. I think that it will be far more beneficial whatever the outcome. ASD can be a fertile ground if there are seeds of doubt planted.

Well I think you have had some great luck there! Having someone in your corner who "gets" it all, is an amazing stroke of luck. You taking the bull by the horns has led you to a pretty good place by the sound of things!

I think reading through Lonewarrior's, Jonesy's, and your last few comments, that there is light at the end of the tunnel. Things tend to iron themselves out in ways. There are good people out there too.

Best of luck with it all, and I think you will be OK.

Really good advice, I am leaving it to my union rep to discuss Absence Management Interviews. She said that Occupational Health will advise on any ASD related adjustments needed for my return to work.

I am incredibly lucky that my Union rep is very well informed about autism through previous employment. It is refreshing not to have to explain everything from scratch. It is helpful having the Union as a buffer between me and a stressful work situation. 

Thank you for giving this such careful consideration, and for making such helpful suggestions.