Wanting to be understood
I am 34 and about 6 years ago i went for diagnosis for Asperger's (My younger brother has had a diagnosis since the 90s i believe) i saw a lot of traits and similarities in myself and i wanted to know (and i told them this) if i was just an as*hole or there was more to it. I got to the second stage and saw a psychiatrist who assessed me, i got 4/5 in the required groups and was told that although i have autistic traits its not quite enough and a diagnosis wouldn't help me as i am established in my life (i have a good job and a girlfriend and i can drive) and have developed a multitude of coping mechanisms and i am very self aware.
So life moved on, i continued to avoid social situations more and more and through myself into running and cacti to obsess over. I met a new person who is more out going and pushes me to do more... which is great, i guess i am a better person now than i was before, we live together and have been together just over 5 years.
Now i feel i need help, i feel like i am going completely mental, i cant quite work out what it is and besides going back to the doctors i dont know where else to go.
My gf says i am great in social situations, but these are always when we go out, i have places to hide or we can leave, i can spend a lot of time going to the toilet or get drunk to cope. I bounce off people and in the right crowd i probably seem like the life and soul of the party, but the other 90% of the time i just want to go home and go to bed or rip my skin off and scream.
So we had the odd time out with 2 particular friends, one is the sister of my gf and we do get on very well (probably too well and inappropriate at times....) but if i am not feeling it then i cant and dont want to engage. The other friend is a long term friend of mine, and we used to have stuff in common and i used to like her, but times moved on and we are different people,like i said i bounce off people and she is very tough. We been out for meals as 4 a few times and i am happy just sitting there is silence, responding when spoken too, but i dont want to do much more... i then frequently get told i am being miserable and my girlfriend does this thing where she hits me or gives me a strained look like "f*****g SORT IT OUT" and that obviously makes me worse. When we got home from one of these nights out i even got told i was really rude to my friend and they both thing i dont want to hang about with them and i dont make an effort.... now i can not recall how i was rude, i mean this isnt new to me, i am very aware i say and do things that other people might think are inappropriate or rude (kind of the reason i went for a diagnosis at the start) but this was things i just can not recall happening the way i am told... or at all
Now i know this might sound like am painting my gf as the bad person in this, she really isnt and i talked a lot to her over the years, trying to explain myself and how i think. Its been good for me, before i would act "odd" and it would upset her or cause issues, but now i know its okay to explain how my brain is working ...e.g. she comes to me with idea of doing something fun later that day, and before i would make excuses to not go (she had changed my plans and i am not prepared) and this would cause issues etc, but now she knows i need time to process and so will give me the idea, or if it is on the fly i will say "Sorry i was not excited about your idea of going out later, but i just need to process it in my head, i want to go, just give me time to respond"
The latest incident which has my gf telling me shes now tired and fed up of having to mop up after me is the following...
we had a busy social weekend, a friend of hers from London came down, now that was fine for me, i get on okay with them, but not so much that i have to make an effort, we did things and went places, so lots of distractions. I then went to my volunteer place on the sunday and later we went to our dog training group, being the only male and amongst lots of older females i got lots of attention (which is fine, i just smile and respond.. its in a field i am comfortable).. so we then come home and we are suppose to be having a BBQ with the 2 i mentioned above who are going to set things up for us before we arrive. Now we have sort of 2 gardens and one leads onto a main road and the other is round the back with fields (but a lot smaller). I spoke to my gf earlier and we agreed to have the BBQ in the back garden so smoke wont blow onto the road and cause issues for drivers...to be fair we didnt communicate this, but i didnt expect them to arrive till just before we got home....but i am socially stacked at the moment.
So we get home and i guess as i been distracted for most the day i hadnt mentally planned what would happen when i got home (i plan every moment and possibility in my head for every day so i am prepared for more circumstances). The 2 friends have set the BBQ up in the garden by the main road and are both chatting away when we come in, my head is like going to explode, so i go upstairs and try to decompress, but i am then worried that this will be seen as being anti social, so i go downstairs and see some random person staring at our garden and the BBQ, this makes me more anxious and i start pondering if we are even allowed one (we rent) so this is making me more anxious. I sit in the front room and everyone goes outside, my girlfriend sees am trying to chill and so leaves me too it, but its been about 30 minutes so again i know i will get told off for being anti social and making these friends feel unwanted, so i plonk myself outside
Now we live next to some neighbours who can only be described as inconsiderate pricks (long story, but they are the type of people who park outside your house when they got 7 spaces they can use and when asked to move dont see how its a problem) and a pub beer garden.
So i am feeling a bit on edge and i am okay with the people in the beer garden but not very comfortable with it, i dont want to draw attention to myself and i often mumble so people cant hear me talk as it makes me feel awkward knowing people are listening to me.... i am trying to relax and make awkward conversation as thats what expected of me but its difficult and then my gf starts doing the death stares and mouthing i should relax... then the neighbours who have a garden 4 times larger than ours decide the small bit that borders ours is the best place to throw a ball around, it then hits our fence, sets our dog off who has been so so well behaved at this point, i get angry and go into the house to chill out... my gf comes in and tries to calm me down and tells me i need to relax and i am making every one feel awkward. With that the pricks next door throw the ball at the fence again and the dog goes crazy again and i call the dog in and slam the door (in anger) ... my gf goes crazy at me, and says i will have made everyone out there feel bad and awkward, people in the pub and our friends and she has to go out there now and make it all right and its okay for me as i can go hide away. She goes off and i get changed and decide to go for a walk, i text her to let her know thats what am doing....
But as i walk i think, i think about how i dont fit in, how none of this works for me, how the world works in a way that is "stop being moody" rather than "what can we do about this situation to make you feel more comfortable", i do admit i contemplate heavily ending it or just vanishing, to go home meant going back to all that and facing the aftermath of what i had done, i start working out how i can leave my life.... i am in a real mess and i walked for 50 minutes across fields and lanes with my arms wrapped about me, i ended up sat up against a fence post and got a message from my girlfriend saying she went to give me a drink and panicked as i wasnt in the house but then saw my phone and a drink is waiting for me... this made me more upset... i sent her a message back explaining a lot of what i said above and walked back. i got back when it was dark, they were all in the garden still and i joined them for a bit, i was okay with this, it was comfortable, i then went to bed and that pretty much leads onto now.
My gf is not happy with me, says i got to sort it out, but i dont know how, this isnt the first time something similar to this has happened. Its always me though, all my life its always me that causes issues and no one else, its always me who is the one people tell off which tells me something is wrong with me... i discussed all this with my gf but the way she listens to me makes me think she thinks i am just making it all up or that its an excuse for behaving badly.
Now i know everything that happened was basically nothing, but thats how it is, in my head its like a war is going on and its so tough for me, but i tell her that but she just doesn't believe me or thinks i can manage it.
I think i always been like this, i think i just been able to control the situation more, when i was a kid at parties or discos i would sit in the corner on my own, i only went as i was basically forced to by my mum...and i was fine with that, i was left alone mostly.
So here i am, i am thinking about going to the doctors again, but i am scared they will just tell me am normal again and if i am.. what does that mean?
Welcome to Wrong Planet.
It distresses me to hear of the kind of dismissal you were confronted with from that ignorant practitioner. There are autism bigots in many professions, whose opinions are both ignorant and insulting. Diagnosis is a very important step of validation for some, and it matters not whether you have a job or whatever. You will still face challenges however successful you are, because you are a member of a minority group which is not understood.
I think the place to start for you may be first and foremost to learn more about the spectrum itself, and how it affects you - it will affect you at this stage in more ways than you are aware of.
Many of us here started with Tony Attwood's "The Complete Guide to Aspergers", and it was the book that most helped me years ago when my own self-discovery journey as an AS person began. I am glad it was that book and not some of the bigoted books that are also out there.
There's a lot going on, but I think you have to put your energy into you for the time being. It sounds like your girlfriend expects you to behave in a neurotypical way, which is often a road to complete burnout for AS people. Perhaps after reading the book (if you do read it) you could read it again with her.
Also suggest you look for articles and videos on Google made by AS people about autistic burnout, and recovery.
Although you feel very low now, this could be a major turning point in your life. I hope so.
Hello
I can definitely identify with what you are saying. I spent years being able to cope (either through drink or sheer determination to be 'normal') but eventually I could no longer keep coping. I have had three breakdowns over a number of years and finally got diagnosed with ASC this year.
I'm not sure if it is just getting older but I have found that although I have ways of coping/masking I can't keep pretending all the time and need more and more downtime.
There is a book by Philip Wylie called Very Late Diagnosis of Asperger Syndrome that I have found really helpful.
I hope things get better for you.
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Diagnosed July 2018:
Autism Spectrum Disorder - Asperger Syndrome ICD10 F84.5
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 35,980
Location: Long Island, New York
There is a term called “Autistic burnout” referenced above. Like typical burnout it comes from doing too much for too long. For Autistics or for those with a lot of Autistic traits when you add the daily constant stress of trying to “pass” or “fake it to make it” to the normal stresses of adult life this makes the burnout come on harder and faster. As mentioned above this is widely not understood and often attributed to lazyness.
The last clinicion you visited did not diagnose you (incorrectly IMHO) because you were seemingly were not impaired in a significant manor. Now you are, probably do to more stressors. You are having suicidal ideation, that is most certainly being significantly impaired.
In order to have a better chance of being assessed correctly it is better to go to a Autism specialist who is familiar with how autism presents in adults. These people can be hard to find and expensive. The situation is better then 6 years ago but there are still problems. If you do go for a reassesment do mention your brother has been diagnosed. Autism often runs in families so that any clinicion that has a clue should weigh that as factor in favor of a diagnosis.
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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
I used to be with a very social partner that pushed me to socialize too. I would drink to handle the situations and would sometimes end up getting overloaded and having meltdowns, which was confusing to everyone involved because I didn't know anything about AS at the time. It doesn't feel good to have your experience minimized and it doesn't feel like unconditional love. My current partner is more similar to me in terms of desire to socialize and is very supportive of my issues and always has my back. I don't feel the need to drink anymore. Being free to be yourself is very important. I think it's important to get your gf to understand that you can't just behave opposite to your nature without horrible consequences. I pushed myself too hard last year and combined with some health issues I had a burnout which I'm just coming out of 9 months later. It's a horrible experience that I never want to repeat.
You don't need an official diagnosis to start creating a more sustainable life for yourself either. I live in a tiny village with no access to anyone who could diagnose me but I have read the Attwood book mentioned above and it's a great resource for learning the specific areas that cause problems in your life. Accepting myself, working on those issues and healing my gut has me feeling good again with no more of those thoughts that the people in my life would be happier if I wasn't here.
Thank you for your responses. Its nice to hear from people who dont dismiss my concerns or just inform me that "everyone is on the spectrum" like it solves my issue...
Its interesting to see a few of you mention that drink helps, having noticed its the only time i am "normal" to others sort of reinforces that.
I dont think i necessarily feel i need to be diagnosed , but i want some confirmation that i am not going crazy and the way i am is the way i am and not some scheme i have made up to be labelled. My original diagnosis i do believe was correct at the time, for years i was angry with it and never properly read it, but i dug i up the other day and it was interesting as it did say i had many autistic traits. I guess what we all want is for people to not think we are just being dicks, its not obvious to other people and everything seems normal, until a certain set of events happen and suddenly we change
I am definitely going to get a copy of the Attwood book (seeing as its recommended twice), thank you for suggesting it, and work on my gf and get her to understand better... she does try, but she also has issues her self (not autistic) and we both try our best to help each other, but dont always get it right.
Its been really refreshing, i think i really needed to hear other people tell me i am not just misbehaving
Thank you
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Your neurodiverse (Aspie) score: 124 of 200
Your neurotypical (non-autistic) score: 91 of 200
You seem to have both neurodiverse and neurotypical traits
Go ahead with the recommended reading, but I also want to suggest that you can probably improve your stability if you put more limits on your social expectations (yours or others') instead of just trying to go go go. Do it unapologetically. If you want a nonjudgmental label to put on yourself, just explain you're an introvert and need your alone time. Again, do this unapologetically. You have nothing to apologize for.
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A finger in every pie.