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. 

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!

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!

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!