Hi guys, I hope you don't mind me tagging you in this, but as you were all the first to so kindly respond to my issue/s (to put it mildly) - I want to let you know how my second appointment with GP went today. Really, if I had followed the instructions he had given me more closely, I likely would have been referred to Specialist.
The Dr had given me sites such as mencap and others to read through and try and highlight myself with what conditions read out loud to me, a lot I was aware of, many I was not such as PDA (is it PDA?) apologies if incorrect, but it is alarming how much that described my behaviour in particularly through my late teens until early twenties and I wanted to know more about this though I was most certainly not ruling out anything else, as there are so many conditions on the Spectrum I could easily say 'well that happens every day, I feel that' and it is just a bit chaotic at the moment.
The Dr said he did not want me to return with my opinion on certain conditions and more examples - to cut long story short - he wanted me to write down every day what I am feeling. Though to be honest, I did not quite understand as what I am feeling does not necessarily include a direct link to anything I am convinced of on the spectrum I have been in the grips of in my firm belief for a long, long time. He says I was in such a state the last time he seen me that he understands on this occasion, it happens and to do an exercise over the rest of the week, and post him the pages I have written at the doctors when I get a chance next week
Though I am still not entirely clear, if there are any GPs on here who think they may know what he wants, or if anyone else has had to do the same thing??? The reason I am panicking is because the only way I can describe what is in my head at the moment is white noise, with a combination of tears streaming down my face and the constant feeling of grief. Each day I am seemingly experiencing a high-stress event that I definitely did not cause.
I have never been able to sleep in silence due to the things I have done in the past (not horrible things to people as such, nothing nasty) but regret, I have voices in my head that repeat and repeat and photographic memories of times when I was absolutely out of control, reckless and displayed a complete lack of inhibitive behaviour which at the time was considered 'funny' ... I didn't know when to stop. It ruined my life.
What I did read about was PDA which I had not heard about before and this is probably because it was not classified as a legit condition until 2002 .. the year I was supposed to have graduated school but didn't .. I absolutely wrecked that too
I explained to the GP I need to know more about this condition as it scares me how reading into this describes my day-to-day life, even today and to be honest, I dont even know what my life is. I know though I cannot diagnose myself but that scared me, how I have spent so long not looking into other possibilities when I know fine well autism/extreme mental health issues have come from my Grandmother (Dad's Mother's) side
As I say, I am suffering acute depressive illness and anxiety but I believe it is because there is something else missed that is the core of the issue. I have tried everything with medication for depression, to the point they given me seizures (controversial seroxat meds etc) and I will not return to any of them as they did absolutely nothing but make my behaviour 100 times worse
My family do not have a clue generally, when it comes to mental illness. I am not having any understanding, most of my best friends who I have not seen for years are of the attitude 'man up, he's acting like a clown' and I have never felt anyone truly understands what is happening. I feel like the pressure is killing me, I am not joking. It now has a physical effect breathing problems, palpitations, weight loss, trembling.
PDA is something I am absolutely convinced could be central to my problems, though. If something or someone can help me explain what my doctor wants, how do I do a day to day diary in this condition?? I told him I understand him but he seemed rushed this time, did theGP, but I need to get this right because one I do not want to waste NHS time and two it is absolutely crucial I see a specialist to try and find out what is going on. It has been too long and I am at breaking point. If I am fobbed off by a specialist I am scared about the future though not entirely bothered about me, if I live or die. My life is ruined already, 37 years nearly 38 and through all this behaviour (I assure you, I am not a bad person. no criminal records, just broken) I have absolutely nothing. I used to be a promising guitarist, I worked my way up the music industry, know a lot of famous musicians and actors today even. I had breakdowns and just given all my equipment away which costs a fortune. Why did this happen?? I moved back to my hometown, fell into addiction problems (I am on a program now seeing to this) but even always told the program , my mental health even far before these events, it needs looking into ... surgically.
If anyone can help me though I would be so grateful, I just want to know how the Dr wants the information from me, written down. It is so crazy, as I say my head is full of white noise or if not that, thinking of the end when the pain will just stop and then I will no longer be here to cause anyone problems. I wish I could articulate this better than just sound like a moody teenager but I am not. A 37 year old man. It is absolutely shameful but I need answers. I have tried my best to fight this and given all I had.
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MrFlosk1986
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I would look into ASD for your issues. I don't know how many people get diagnosed with PDA as adults as its more commonly diagnosed in children with observation from their family and therapists so I suspect being diagnosed as an adult is rare and as well as not having input or evidence from somebody who knew you as a child, school records, etc. It will be hard
You need a referral to a psychologist. ASD psychologist as PDA will fall under their remit, better than a generalised MH psychologist. You won't meet the criteria for a intellectual disability psychologist, but if you did that would be good, that would indeed be the best approach.
Thank you very much. I appreciate this more than you know. Really. This is what I feel really represents me in what you posted, but as you know GPs or Specialists dont like to be 'told' before they have got to know you and I am worried that I am absolutely certain the above is where I fall on the Spectrum, or it is surely a huge likelihood, that me mentioning it diminishes my chances of any progress in looking further into the matter. It is hard to know what to do though as I say, with having to write a daily diary to post to my GP about what I am thinking about or what I feel. I worry a few words may just sounds like a typical depressive. possibly deluded and told to just try therapy or something like that which has not worked previously, certainly not medication too. If anything, Seroxat I remember nearly killed me. I had multiple seizures when I was young from serotonin syndrome. I won't be going back there.
also as for intellectual disability - you would be surprised at the things I struggle with. I unfortunatley, sound far too much smarter than I am just through writing. I struggle with certain things, for example I could even watch a Childs movie and not understand the plot or message at the end, but I could watch something abstract and find it absolutely wonderful and fitting. I am also awful at Math, slow when it comes to reacting to simple jokes, in fact I did not pass any school, I dropped out before GCSE years and failed them all. I was placed into some of the top English classes but did not pass high as I did not understand the coursework as I did with the rest of subjects. I wrote my English Literacy exam - the whole thing - in capital letters. I mean, what the hell. I struggled when I attended college, whenever it come to the actual work, I needed help all the time understanding how to approach the work. This problem lasted even until I went to a guitar school in London. That would maybe have been more of a success but unfortunately I had to come home as I lived with a bully who completely manipluated money out of me and I could not afford to last the course. To this day, I am still chased for thousands for the debt of dropping out of that school. Another problem I am not dealing with and unable to make my mind up when it comes to dealing with all the looming financial trouble. That is another matter entirely. I quite frankly should not ever be trusted with money alone, I am too reckless. I pay my rent and scrape by on energy but i can barely afford anything else because I despite try my best, worry I am going to need money for an emergency due to living on the poverty line with nothing. No assets, no savings, I don't drive. I am absolutely tired of money issues. Living with an undiagnosed as of yet disorder yet deemed too mentally sick to work by the Govt, I am walking a tightrope and do not know which way to go. I am tired of destroying things and it is embarrassing dealing with this sorry excuse of a life day-to-day
Firstly I must say that it must have taken so much courage and strength to write this! It is very good to open up and obviously you are crying out for help, which is a positive.
No disrespect to your GP but he doesn’t seem to have a clue or understand your situation. Went recently with my son to my local GP who didn’t have a clue about AS and OCD. He told us that he has never seen a person in his 50s having OCD, plus he kept taping his pen on the desk! My point is that some people don’t have a clue about autism.
If I would be you, what you wrote here, send it to your practice and ask to see another GP.
Can you contact the National Autistic society? Can someone in your family or friends help you? If not what about social services? Citizen advice bureau?
I perfectly understand your situation and it saddens me to see that there’s no proper help out there. Keep pestering them, in a nice way. I am going through something similar with my son and at times he’s even too anxious to have to talk on the phone.
I wish you all the best and hope that you will find the help you deserve.
Hello, from what you have said you may have PDA (Pathological Demand Avoidance) and it does affect adults. It might explain all that you have been suffering with and your anxiety now at trying to do what your GP has asked because it is a ‘demand’. The anxiety caused by his demand to record your feelings may be what is causing you to feel so awful now. Anxiety can make it impossible to think properly and cause horrible physical symptoms too. The PDA Society has a very helpful website. This is a link to a page that has useful information about what it’s like having PDA and about getting support.
I think it’s disappointing and concerning that your GP has said to not say what you think is wrong. Often people do have a very good idea of what is wrong and you are clearly intelligent and have thought a lot about what you have been struggling with. The GP may not know anything about Pathological Demand Avoidance and assume you have anxiety. The information at this link may help you explain to him. I hope that he is open to really trying to understand and help. If not you may need to see a different GP.
The PDA website also has links to support groups. On Facebook and local ones too.
If you have PDA it would explain why you have struggled at work.
Please try not to be so hard on yourself or so critical of yourself. You are clearly a very intelligent and insightful person and trying very hard to understand and overcome what you have been struggling with. We all struggle with different things, none of us are perfect.
It sounds as though the GPs request/demand is too much for you to cope with. Perhaps you can tell him that you have tried and point him to the PDA website for an explanation as to why. If he refuses to look into the PDA possibility the website has information about where you can seek diagnosis.
This is what (PDA) was discussed briefly with my GP but he cannot diagnose (obviously) and as they are pressed for time, as I said it scared me how much reading about PDA resonated with me - he quickly moved me on, and requested simply that I get back to him and post him the exercise he requested but will contact a specialist when I have completed what he wanted. I simply do not know how to do what he wants exactly, however ... as all I can describe is complete chaos/disorder/white noise in my mind and a heavy, what seems like a narrator of my day but also a voice repeating what I have done in the past, right to the point of being anxious about bumping into someone on the street, I then imagine arguing, my brain arguing back ... this can go on for hours sometimes and feel real enough to the point I am convinced, for example, the subject is angry with me for whatever reason this could be. I genuinely have horrendous neighbors and have had conflict/abuse from them in the past- it could be them a lot of the time and most of the time, I am under the impression they dislike me to the point I am affected in my own home as to what I do, any move I make within my own space - but this is about my living situation where I do not feel safe in my own space. This is not a feeling exactly, how am I supposed to make notes of this??
Apologies, that is a poor reply but I am truly exhausted today. I am still anxious about this process. I am so brittle I can't even look after my dog so my Mother has taken him away for some time. This all sounds so pathetic.
My behaviour in general has been a bit erratic today but I find I am still doing the same things I have to do repeatedly to get in any kind of comfortable state (of which I never am)
I play the same films or shows over and over again to keep sound out from outdoors. I guess the only way I can describe this is 'company' rather than escapism. This would be trivializing it. I have been doing this obsessively for years.
I may have pointed out things in earlier posts, I have wrote so much, but I can NOT sleep in silence. I either have to use white noise tracks played on an internet platform or perhaps a TV/Film list I have compiled. I have one I have used for years in particular. I can not go to sleep without these things, they are vital. I have too loud a conscience (sp?) and I genuinely fear having to go to bed, close my eyes. I do not sleep in the dark, ever. I have lived with friends who complain about this and do not understand , leaving a lamp on is essential to the mood of the room or I won't switch off. I once lived with a bully who would walk into my bedroom and switch everything off once I was asleep though he knew I needed it. I would pretend I did not notice him then have to switch them back on when he left the room. I paid towards the bills - this is what I mean, it seems pathetic but yet more examples of friends or family never understanding why I have to be in certain environments. I have never had any emotional support that is genuine.
My Father who is still alive, living alone. He sleeps in exactly the same environment as I do. My father in the past had done jail time. Had diagnosed schizophrenic when incarcerated, etc. My younger brother was sectioned twice in his early 20s - schizophrenia - he practically had not left the house in around four years after a breakdown around 18 years of age ... he stopped drinking with his small circle of friends.
What I am trying to show above is the complete lack of real emotional support or understanding in our family. My Father shows now real emotional support. If you could see how he lives, you would be horrified. There are levels of OCD I have never seen. My younger brother, we're practically estranged. Since he left the hospital he has been getting help from community MH nurses to get by day-to-day
With the alarming rate of mental health crisis on my Father's side, I have always demanded a more surgical look, but I have never been able to get any answers and it is getting to the point I want to scream.
I have always suspected a spectrum-related disorder in me, and I am absolutely convinced my younger brother has the same issue that has been overlooked during his time in the hospital. I am not sure if this is because he was in a catatonic state for most of these two stays and very little information was gotten from him, and to be honest, the care around him was of poor standard within our local NHS MH Trust at the time.
I know I have gone off on a completely wild tangent here, but I am always too eager to get to the next point particularly when it comes to the lack of real understanding of the presence of MH disorders on my father's side of the family
I also have a half-brother on my Dad's side - paranoid schizophrenic - I do not associate with him whatsoever as he did something totally unforgivable and stalked me with a torrent of abuse when he become convinced me and his only friend growing up were conspiring against him to humiliate him on social media platforms.
SO - as you can see, I have a completely healthy, happy functioning family. I Have not even given you the tip of the iceberg .. and yet, I am still seemingly struggling to get the help or really convince anyone in the professional medical community locally that I seriously need to see a professional
For anyone interested - in terms of habit, there has been involvement of alcoholism (my father) drugs (my half-brother, strong skunk) throughout their lives which they turned to, to deal with their mental pain. My younger brother, he is not an addict of any form when it comes to substance abuse. He is a responsible drinker at the most but he does have serious habit in the way of spending most hours of his day whatever his OCD drives him to do - he has very little thing nor ornament in his property, obsessed with neatness but will play on and build computers.
I am not sure why I am still typing the rubbish my busy mind is spewing here but as someone above stated, maybe printing the exchanges we have all had may help along the way. This is so difficult that sometimes I have contemplated terrible things to get people to co-operate and help me, to find someone to at least make it valid that I am not well, clearly, I need an expert to look at me. Good grief. I am 38 next year. My life is already ruined through the lack of control I have had over this monster inside of me, It would at least bring me a bit of peace to learn more about what happened. I do not know where I will start next, if that time comes. i will never have a family, it is impossible for me to be around others or be relied upon, I can not put anyone through dealing with my daily behavior, it would be borderline cruelty. I just want to find out more about myself and then be left alone in peace. At the moment it is anything but that because I do not have a sign above my head explaining why I am the way I am, to put it in simple terms. I am lost.
Do you think it would be a good idea to post the letter my GP requested from me and say that I have integrated with folk on websites associated with what I am looking into and have been thinking about for a long time, (but he did actually himself refer me to a site which led me to this place, which you have all been so wonderful in helping me on) and explain how I simply have not been able to complete the tasks he given me due to the state of mind I am in but through advice from people in the community online who are very knowledgeable in spectrum disorders/autism/aspergers, etc - I have received this feedback and feel he should consider the discussions I have been involved in?? I will also include as much as I can about my particular issues which are rendering me almost totally dysfunctional in terms of being a productive member of society fit for any kind of responsibility at present, because I can not be trusted, I cannot even trust myself - that sounds pathetic and I am ashamed to say it is, but I have, for decades now found myself completely unreliable, I will let people down no matter how much trouble it may create as a result if I panic before an event of any such example - which I am finding is always - I in particular since a child have always been awful in the morning, it is rarely a time I can tolerate and generally I feel out of sorts until later afternoon time. It is a feeling I can't explain, nails down a blackboard is about as close as I can get right now in describing a morning. I can never remember waking up feeling healthy, refreshed, and ready for anything. The last time must have been in my childhod. It started in my teens, particularly severely. I would simply stop going to school, or turn up in the afternoon and be berated by teachers I would pass in the hallways that I had missed on a morning.
There have been times in employment in the past (and God knows how I was ever let loose within any establishment) when I just simply did not turn up. I did not notify anyone. I would not leave my room for maybe days on end and not look at my phone, not until I was maybe intoxicated enough to build up the courage ..at one point in my life, to find out what damage I had done. I was lucky enough to keep the job I speak of on this occasion (ironically, I was working for a local mental health trust, the one that I will be referred to if my Doctors see sense) because they could clearly tell I was mentally troubled - though I never discussed this with anyone in my office. This was embarrassing to me. I returned the following week, sometimes I would manage months with no attendance problems and then it would happen again. There would be the odd day, I would not arrive. I would remain in my bedroom at my Mother's house and not leave, not even to use the bathroom. Later down the line, we had a new boss come in who was less empathetic to my 'unnamed' condition, she did not know me well, and thought I was some kind of trouble causer. She decided to move me to the end of her desk and watched me like a hawk all day. I started to have crippling panic attacks, and could not breathe, so locked myself in the bathroom for long periods. I returned, sat down, and remember I banged my foot against the floor as if it were a pneumatic drill as I sat sweating bullets, feeling the Earth move beneath my feet .. as I attempted to do any work at all. I rarely managed a thing. Sometimes I would get irrational fears, that I would have a stroke as I walked past the creditor team to collect a fax.
I then worked out that as I had the key to the filing office downstairs, I would spend as much time in there as I could so the boss was not able to watch me. She obviously knew I wasn't producing anything and not worth the extortionate agency fees they were paying for my services and eventually delivered the ultimatum that I had to have posted my entire payroll and show her by so many days time. Once the first weekend arrived, I never returned. I didn't tell them. I had some friends asking if I was OK, I made some excuse that I got a better job I could not turn down, due to the embarrassment. That was over twenty years ago now. It was the longest job I have ever held down. Any other job, I have never been able to understand exactly what I am doing and soon found I left. One thing also, which is as baffling to me as it will be to others, I have always dreaded anything to do with dinner hours within the working environment. I would avoid anyone at that time, and where ever I would go to dine, (if I did at all) it would be outside the workplace. I would never be seen eating, would refuse food in the office, and refuse to go to dinner parties after work with work friends. I have never once been able to do this with work friends, or couldn't, rather as I have now not been employed for a decade's time. The amount of times I have spent in an office when I was able to work without eating from 'breakfast time' at home until I left the office at 6pm .. I would say it was at least 50% of the time of anywhere I worked, as I did not want to be seen eating, nor would I take in my own food. As many work places were a little far from a fast food place, I would just leave it. Obviously this left me in a state throughout the workday. It even took me months to build up the confidence to accept a cup of coffee in most workplaces.
I am sorry to write a lot on the above but I do not understand why I behaved in this way, also. Simply eating and drinking, in the workplace I rarely could do it. I know for a fact if I was put in a working environment now, I would be exactly the same, if not worse. I am physically in an awful condition as I speak due to the appalling diet habits I have had throughout my adult life.
It is such a mess. One thing is, I am very focused on a spectrum-based disorder as I have already explained, as reading about particular diagnoses resonates with me so much, it is terrifying I have missed this for so long all my life. I have always had a brutal depression and acute anxiety but I know it is something else driving it I can't quite put my finger on. I must be looked at for something along these lines or it is absurd to not do so. If it goes unchecked, this is going to lead to a very bad ending. I do also suffer PTSD, I know that for a fact. Though these are from events recently, over the past two years.
I am also wary of the fact that I may pick up PTSD from minor events that don't actually tend to bother an average, normal healthy-minded person. There can be events that I find upsetting that will bother me for weeks that would otherwise seem like nothing to others,
My mother and my dog were almost killed last year in a vicious dog attack too (Malenois breed, deadly) Mother was badly hurt, hospitalised and miraculously my dog survived though surgery cost thousands. We never caught owners who ran away with the hunting pack of dogs. I am still not over that one bit and can explain how later
I think it’s a good idea to write to your GP, my only concern is what response you might get. They have already not realised that what they asked you to do was a ‘demand’ and so likely to cause you difficulty if you have PDA. It may be, as you said, that they were short of time.
If you decide to write you could give examples of the things that resonate with you about it and say that is why you want a referral, and it needs to be to someone with expertise in PDA. From what you have said you have also suffered a lot of trauma so they should also understand about trauma informed care.
I think the PDA website has information about getting diagnosed so include what they recommend in your letter.
Many things you have described throughout your life were traumatising so it’s no wonder that you have been struggling. Your responses to the trauma you have experienced are normal and the way we respond to threatening situations.
I am sure that with the right support from those who know and understand about trauma etc and how to help and support you, you will be able to get better. With the right help you will get more understanding of yourself and learn coping mechanisms.
This article on Leightons opticians and hearing care might be helpful to you too Since you find noise difficult.
Please please please come along to any of our sessions - I can give you free links. These will help with your mental health. You are not alone. There are good people around who would love to meet you and be with you. Please get in touch, Carol 😊
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