What have you achieved from getting diagnosed?

It is exactly that! What do I do now? I feel like I need a bit of guidance and direction but the reality is that I’ll just end up stumbling through and finding my own way! I have a bbq at mine for a few members of my group later, I might chat with them about it. We’re mostly all relatively newly diagnosed but it might be helpful to get other people’s take on it.

You’re exactly right about the signposts in the journey. I felt the same when I finished uni - the end of a process that was comfortable because it had waypoints and clear goals, and then life after uni had no clear direction.

It’s reminding me now of the end of “I Robot” where the robot finally gets consciousness and free will and says “What do I do now?”

I really hope that you can manage to use your diagnosis to make positive changes to your work environment.

Thanks! I'm not being hard on myself, more just wondering what, if anything, I'm supposed to do next. It is good that both myself and others have a better understanding of why I am how I am. I've always known that I am different, now I know why. I'm really sorry to hear that people took advantage of you! That was very mean of them! I hope that they're not still doing so? Good luck with gaining employment. What type of job do you want to do? Your answer is good :-)

It's a bit like the journey from realising we were probably autistic up to the point of diagnosis was signposted quite well. But post diagnosis there are no sign posts! We've been sent back out into the big wide world with no clear guidelines as to what to do next, how to use this new information, where do we go from here? It's like being lost in a random and remote part of the country with no sat nav, no map and no road signs! You just kind of have to take pot luck and hope that you get to somewhere good eventually!

I guess that having a formal diagnosis and 'knowing' that I am autistic does allow me to step back from things when I need to, to feel ok to acknowledge that I am struggling with something and give myself time to recharge rather than feeling that I just have to carry on.

I hope that this discussion does get quite philosophical and it's interesting to get input from those that have been diagnosed for longer and are further along their journey. To see what they think that they have achieved from their diagnosis and where their journey has taken them. Maybe it will take some time to fully adjust and see the benefits but I'm sure that we will all get there in the end.

With regards to autism and genes. My youngest daughter who has her 4th and last assessment for autism next Wednesday, will also be having genetic testing once she gets to the top of the waiting list. My understanding is that myself and my husband and quite possibly our other children will also need to be tested. It will be interesting to see what, if anything shows up.

Yeah diagnosis is just a part of the journey!

Haha, yes I know exactly what you mean. The more formal interviews are, the more awkward they become. I have many stories of interviews going strange or just failing for completely stupid reasons.

For example one time I applied for a job at a company doing a really specific job. I just happened to have done exactly the same job elsewhere and I knew there was no chance of anybody with similar experience applying. Had an interview and it went surprisingly well (best interview I have had, although a good part of that was due to it involving tests instead of all interview questions). They were very happy and confirmed to me that they really didn't expect to find anyone with such relevant experience.

Seemed all good. Then they invited me for a second interview. They said it would be very informal and not really an interview, more of a social get to know the team. Sounded like it would be a bit awkward but I figured the main interview was done. The second interview was informal like they said. However they were asking me questions such as "do you like dogs because the person you will be working with loves them". I gave a blunt honest, "no". It didn't seem to go down well. Or another was "what music do you like", which I said I don't even listen to any.

By the end of it I could see they weren't impressed, I just didn't gel with them (as with every interviewer) and got rejected.

I did speak to a doctor before to try get a diagnosis when I was expecting to have a bunch of interviews in the near future.  He said that he would arrange an appointment to see someone and I would hear from them, but I moved house shortly after and never followed it up.

To be honest I don't know what to say to a doctor about this anyway, which is why I've never bothered again. It was very awkward first time I spoke to one.

In regard to interviews, I have had plenty of these interview help sessions etc. I get what I am ideally 'supposed' to say or how I'm 'supposed' to act in these formal situations. But it is one thing knowing and another actually pulling it off. It isn't something that really bothers me in any emotional sense. I really don't much care if I fail an interview because it is just normal to me not to ever pass haha. I'm am a very laid back person, so I do tend to brush these things off. 

The part where a diagnosis comes in is more for practical reasons - to actually have something to refer to in order to pass interviews by encouraging interviewers to take into account that, say, not being able to make eye contact might be awkward in a social sense but is irrelevant to whether I can do a particular job, so should not be held against me.

My diagnosis has answered a lot of questions, but at the moment I also feel that it has asked a lot more questions too.

I do know what you mean, it's good to have the diagnosis as 'justification' to need something to be done a certain way. I'm finding that too!

other people now seem to understand my need for 'time out', they didn't before.

trying to understand that something is an issue for someone else, even though we don't 'get' it is important.

I'm actually ok with a brief 'hello' hug in social situations with people I know as its usually predictable, I can see what they're about to do so get a few seconds to prep. I do notice some friends being a bit hesitant before hugging me now though. When my house gets too noisy I just switch off my hearing aids :-)

I think it's good to be open about autism as much as possible, it helps to challenge some people's perceptions of autism too!

Yeah, the job interview thing. I feel your pain on that one. I’ve had a couple where it’s included being taken out for a meal as well as the actual interview. Didn’t end well in any of those ones as you can imagine! Also the what would you do in x situation questions. I can never answer because I am not in that situation even though I know I’d deal with it fine if I was to be put in that situation... aaaargh!

Ones where I’ve got the job have always asked me to demonstrate competence related to the job and answer straightforward technical questions. 

Sorry ... going off at a bit of a tangent aren’t I

Do you think that you will pursue getting a diagnosis?

Sorry to hear that you struggle with interviews. I've heard that this can be an issue for some autistic people. I've also heard that you can get interview help and practice interview skills somewhere, does anyone else know where and with whom please? If no one answers that then Citizen's Advice Bureau may know the answer. An interviewer should not be shouting at you! That's really bad! I imagine that you probably didn't want a job with them after that! Another thing that really helped me for those times when I 'feel' that I do need to mask was reading and studying Daniel Wendler's 'improve your social skills'. It's not for everyone but I found it 'really' useful. He's Aspie too so everything is explained really well in the book. 

Hope this helps!

I do know what you mean about stopping blaming yourself for things. I'm realising how very literally I take what people say and that if they aren't specific with what they tell me then I probably won't realise exactly what they are trying to tell me. Now I have a reason why and I can tell other people that they need to explain things properly otherwise I won't always 'get it'. I'm also getting better at realising when I'm getting a bit over loaded with 'stuff' and I'm more able to rejig arrangements so that I can take a break when I need to. 

I'm ok with it being forever, I'm already used to having a brain that's not 'normal'. I'm more just wondering where I go from here? Not in a dip as such just maybe a block in the path of my journey that I need to fathom out a bit before I can move on. Thank you! Spending time with other autistic people does definitely help!

It may prove useful at work for justifying changes to my workstation and other adjustments such as no background music and other distractions. I'm coping as is but things can change.

There's A LOT of research suggesting a higher prevalence of alcohol or substance (mis) use and addiction in autistic individuals. As well as self medicating stress and anxiety, many use it as a crutch in social situations, so they can loosen up and be more chatty and less awkward. My tolerance to alcohol is rubbish, I also have no ability to 'stop' once I start drinking so will usually carry on until I fall asleep! Apparently I go from appearing totally normal and being coherent to really obviously drunk extremely quickly!

Yes exactly, this forum is brilliant for that. Autism and alcohol is another subject worthy of research - apart from the (ab)use of alcohol to self-medicate the stress of undiagnosed autism, I wonder if there's a difference in how we react to it - I seem to be able to carry on making sense long after I should have become incoherent :-)

It's good! Being in a group of people where you can just 'be' and not have to pretend!

I think that many of us go on a similar journey, post diagnosis. That's what's good about this forum I guess, that it enables people at different points pre and post diagnosis to support each other and to share stories. It's kind of reassuring that other people are experiencing the same thing. We can all work together to come through it in the best way that we can.

Getting a diagnosis doesn't 'fix' us but it validates, explains, perhaps illuminates things that may need changing or adjusting. You're making a lot more sense than I was the last time I drank (a whole bottle of) vodka!!!

Don't be hard on yourself! And you are NOT weird, just unique. Being diagnosed gives others the opportunity to be able to understand why you are the way you are. I knew that I was different somehow i.e. I didn't fit in with my peers at school and I didn't follow the crowd. And some very nasty people took advantage of my, for lack of a better term, difference and teased me relentlessly. By getting a diagnosis, I believe that I now potential employers will understand why I am, the way I am in interviews and so will give me a more fair chance to gain employment.

I hope I have given a good answer!

Kitsune said:

We talk too much; interrupt each other; talk at each other; talk over each other. But it works because we're all doing the same thing.

Brilliant! Sounds wonderful :-).

And I could have written, from my own experience, the last five paragraphs of your post containing that quote. In other words "snap" / "same". :-) Apart from the bit about the brain injury of course.

Here's another thought; getting a diagnosis doesn't fix you, but it does illuminate and validate you. According to some folklore, knowing the name of someone gives you power over them, so perhaps knowing the name of our condition gives us power over it. I like to think so - or perhaps we now know the names of our true selves, and have power to channel ourselves to an even higher level of potential (note - I'm sipping vodka so may talk rubbish!).

For me, as you know, I'm in a similar position in that I have a touch of the post-diagnosis come-down & the main thing to adjust to is the fact that you're no longer waiting for diagnosis! Even after a month or so, it's not quite what I expected. It's certainly a relief, and it gives me some pleasure to "cut myself some slack" and look forward to a future of being even more authentic to the true me. That, and having a good framework for thinking through those parts of me that are flexible strengths worth tuning, development areas that I can usefully work on to enhance my enjoyment of life, and what are fairly fixed features of me that I would do well to leave alone and work *around*, is probably the benefits summed up.

Could that be achieved without a formal diagnosis? Probably - but for me I held back from believing it 100% and therefore having 100% motivation to put the learning into practice without a formal endorsement.

It's also a very useful thing to have in my back pocket should I ever need to say "No, I'm not going to do *that* because I have autism and *that* isn't good for me" without feeling the need to add in "suspect I have autism, and if I'm right, what happens is......".

I think this discussion could get quite philosophical (which might be fun!).

I'm becoming quite interested in the different manifestations of autism too, and I'd be fascinated to know if I have any of the genetic factors that are known to be associated with autism. I was reading this paper earlier today, and feeling an urge to map my symptoms to my genes - but a) I need to (re)learn the scientific landscape and b) I need more information......

So in some ways I see diagnosis as a waypoint, not an end.......

Thanks! I don't feel down or anything, more just a bit kind of questioning what I'm supposed to do next? Wondering what the next part of the Journey is? Of course I feel good that I'm able to build links with other autistic people, especially in the group that I run, I 'know' that it makes a difference to them and being able to spend time with other autistic people is mutually beneficial. What always strikes me is how very 'normal' it is, just a group of women meeting up and chatting over a cup of tea/coffee. It's just that the conversation is on the autistic level. We talk too much; interrupt each other; talk at each other; talk over each other. But it works because we're all doing the same thing. There's actually something quite powerful about my group, getting people together, that have previously felt misunderstood and not known where they belong throughout their lives, into a group where they can feel at ease and understood. Actually I think I'm a bit overwhelmed because I've suddenly had loads of new group members the past month or so, the groups got quite busy of late. The vision has become a reality, which is good, but also a little scary!

I guess I'm starting to fully realise how I process information about people and the world. How I take in what I can see or what someone is saying, I think about it for a while and decide what if any response is necessary. I don't quite know how to explain it but I kind of take in the raw data and search through a number of potential matches in my data store that could potentially explain the situation or why someone is saying a certain thing, before picking the most probable answer based on all available information. I'm realising how emotionless I am while I'm doing that too! 

I realise that stress is bad for me too and will try to reduce it where possible. I like to live a busy life but I tend to stick to things that don't require a huge amount of mental effort; things that are enjoyable! NTs have a bad habit of behaving in ways that just do not make sense to an autistic brain! That said, I'm sure that we do plenty of things that make no sense to them either!

Separating strengths is a good topic. There are many positive strengths to Autism/Aspergers BUT this is where I struggle. In my mind, the brain injury that I had has eradicated all of the positive aspects and strengths that I did have as a result of having ASD, and made a lot of the negative traits a lot worse! 

I HATE phone calls! Luckily my friends know this so will text instead. Sometimes I 'have' to do phone calls with regards work etc but I avoid them where possible. You have a good point about delegating tasks to the person who is best suited to the task. I'm presently trying to get a bit more organisation and structure around the monthly/weekly shopping, my husband is useless at it!

Yes I'm a bit prone to 'beating myself up' about things, though I do try not to!

My diagnosis has given me the answer to a lot of 'Why...?' questions

It has provided a way to defuse situations where it can be understood that I'm not 'just being difficult' this is a thing that has a big impact on me and I NEED it done a certain way

or

I'm not being 'rude', I just need time to recover from a situation that I find overwhelming but you think is 'fun'

or

I know this thing isn't important to me, but it is to you and although I don't understand that, I'll respect it

I'm different - and that's OK

It's not always me that's the source of the problem - other people have their own baggage and sometimes that's the issue, not whatever it is that I've said/done

I have rights - if I don't like to be touched then it's OK to say no to 'social kissing/hugging', if I'm sensitive to noise or smells or light it's OK to ask for those things to be toned down...

I'm learning how to be the 'best' version of me more of the time and that's great for everyone

I'm open about my diagnosis and I'm trying in my own small ways to make being different more accepted