Diagnosis has made things worse

Yesterday I paid good money to buy that book off ebay.

That RARELY HAPPENS...

Just sayin'. 

Most books one buys do NOT pay for themselves directly, however three that I have bought HAVE increased the financial value of my lfe, far in excess of the cover price. 

I have a theory about swearing basd on my observation in life, so it might hold no water in the wider world bt I'll put it out there:

People who lack the self control to not swear in formal situations more probably also lack the self control to lie effectvely...

I should just highlight: it is a booked aimed at adults and does include ...what one job interviewer once so delicately described to me (when they were concerned I might find their otherwise all male team shocking) "industrial language" ...it would have been a speedier processing experience for me sat the other side of the conference room table during that interview - if the interviewer had just said: "swear words"!

Thanks, I’ll definitely give that a listen 

Former MemberYou post some great wise stuff. I only recognise you when I hover over your username and see the purple flowers. I may have asked you before, as I ask all the NASnumbers who say something good and don't look like a robot. Have you considered giving yourself a profile picture and changing your default username? It really would help many of us recognise you.

To put it another way - imagine this and other topics where are the users were just numbers and blank pictures. It would be impossible to folllow.

Anyway, apologies if I have asked you this before, and apologies if you decline and I ask you again (thus proving my point )

In case you didn't know - none of your posts would disappear, they would just get your new username/pic.

Currently I am listening (7 hours 6 minutes as an audiobook or 352 pages as a paperback) to an audiobook via my local Library online service which might interest you.  Refreshingly, it is written for adults (as opposed  to children and young people) coming to terms with a diagnosis of Autism / ADHD.

TITLE: How not to fit in - an unapologetic guide to navigating Autism and ADHD.

AUTHOR: Jess Joy and Charlotte Mia.

PUBLISHER: Thorsons (February 2024).

It is available as an audiobook / paperback / hardback / Kindle eBook.

One of the points they make is that in late diagnosed people the lack of information can make people assume they are anxious / not working hard enough / just entirely failing altogether.

They are trying to help people explore the journey of discovering, accepting and flourishing with your Neurodivergent brain.

To give you an idea of how popular the book has become since it's publication in February 2024: my county Library service has 4 audiobook copies and I was on the waiting list for access to a copy for 17 weeks!

Hullabaloo said:

people enjoy being listened to.

Someone once told me; to get the proportion correct (talk : listen) you can remember you have one mouth yet two ears, so 1 part talk to 2 parts listen.

When I was in my twenties, if I were attending something informal (a new crowd I was hoping to meet) I used use my clothing as a conversation "icebreaker". 

A great t-shirt with a design or logo of something which interests you may sound cheesy, (or a badge / button / pin / brooch if you want to attract attention from just the fellow observant people), however, it can be enough of a prompt for a fellow introvert in attendance to start a conversation with you about the subject you are advertising.  Some folk appreciate the none too subtle hint on what it might be safe to use as their opening remark towards you on meeting you for the first time.

Safe counsel, good for us all to remember.

If you're able to attend the events themselves, that's impressive already. I think that the anxiety of trying to out-do an extrovert in terms of talking is not the right motive for trying to socialize with others. I mean extroverts can gain a crowd, because they get energized by socializing with others, whereas introverts recharge by having personal space to themselves. You might excel more if you just chat with someone one-on-one, and just ask open ended questions and allow them to answer, because people enjoy being listened to.

Socializing isn't just being the center of attention and having a crowd of people soaking up your every word, like an extrovert would, it can be a much smaller and simpler one-on-one interaction with another person. Try to keep the socialization simple so that it will be less overwhelming for you. Social skills is a skill, and people can get better at skills over time.  

Anxiety could be caused by a variety of factors, such as past trauma, chemical imbalances, gut issues, etc., or a combination of those things and more, so maybe therapy, prescriptions, a dietary change, etc., might serve as a few beneficial changes. 

I am in my 70s and at some point I just got so tired of trying to be like others I let go and embraced and discovered who I really was, aside from what others thought I should be doing/saying/thinking/etc. I had a much easier time of adjusting after that and finding what really attracted me as opposed to what I felt I needed to want to be attracted to in order to fit in.

SO - job one - find the path to self acceptance.

sounds trite? - It is a life's journey. This so for everyone. The sooner we get around to it the easier it will be for us.

Loneliness doesn't have to be a rut where we always end up back at.

There are ways to participate in the things we love without being crippled by social anxiety:

First hurdle,

"they will think I am different and weird and shun me." This is the highest of the hurdles and when you straddle it you will find most people are actually very accommodating and understanding, even if they are a bit clueless and full of preconceptions. here you can consider yourself an emissary, come forth to set them all straight by simply being an example of self love and acceptance, by living openly your truth as your discover it. You are, at your best, an authentically, awesome autistic person willing to play with the others and yet no letting go of what makes you awesome, and authentically so, even if you are different.

Being understood is something that we would like but the truth is no one really understands anyone else fully. Be honest and authentic within yourself and in your outer expression. You will gain the confidence you need.

So first trust and enjoy being alone with yourself and stop envying what others have. You are unique and awesome just as you are.

So, Think what is the main things you like about the sport you want to play and focus on that, in your mind, practice it your mind alone. Then, find one other person you trust to play it with for practice. Let them know right up front you are going to a bit socially awkward-own it. Without apologizing for being your self, say it up front, that it is a challenge you are working to understand. This shows the other person you are expressing self-love and acceptance and also that you are up for a challenge, same as anyone. They will reciprocate. If they don't keep looking for a practice partner.

second hurdle:

Persistence. full stop.

Thanks everyone for the advice, much appreciated! 

I notice a few comments about the ‘anxiety’ and thought I’d clarify exactly what I meant in my original post. I desperately want to fit in and make friends and have a relationship, but whenever I try to do pretty much any form of socialising, I end up just drifting into the background while the more extroverted people do all the talking. This causes my anxiety to build and I start putting pressure on myself to talk more, but I’m awful at making conversation so I end up just getting more and more stressed out until I can’t bear to stay in that situation anymore. It’s got to the point now where I just avoid those situations altogether so I don’t put myself through those feelings anymore.

I’ve seen advice on trying to go to places/do activities based on things that I’m already interested in so I am better at making conversation. But even this doesn’t seem to work as I have that same problem of just getting overshadowed by all the more talkative people - everyone makes friends with them and I’m left on my own again. It just seems like a cycle I’ll never be able to break now that I know my awkwardness in social situations is down to autism. 

It’s got to the point now where I almost get jealous when I see people having a laugh with friends because it feels like I’ll never be able to have that. Apologies if I sound too despondent, it’s just very hard to see how things will ever improve following this diagnosis. 

Not all sport / physical activities mean team games and contact sports.

Some things can be slightly more individual sports around fewer other people.

Two examples:

1) for a couple of years, I had an excellent Tai Chi Tutor.  He helped each student within the class to benefit from the class within their capabilities and boundaries.  If people preferred to stand in their own space and hone their form movements - that was fine.  Those who were interested were shown how to practice the combat moves in pairs.  Anyone who wished could participate in the moving meditation and Qigong exercises (through which I found some useful strategies to help address anxiety).

2) an Autistic work colleague was a keen and proficient long-term member of his local Archery Club.

Your diagnosis does not mean you have ceased to be "you" - the person.  What hopefully it does begin to change; is you now have the opportunity, (as and when you are ready to do so), to start to learn more about those aspects of how you experience your environments and some of the adaptive strategies which you might experiment with deploying in support of your Autism.

On days of higher energy and enthusiasm - that is a good day to try and be bold with trying out a new adaption to give you confidence to: explore a new place, activity or meet new people.  Once you start to find things which aid your participation (on your terms of thrive ...not just survive or avoid) you might become more confident about e.g. giving the sport or activity organiser an advance courtesy briefing about what it takes for you to be able to take part well (and please would they be so kind as to not draw attention to the tactic in front of the group).

On those days of lower energy and outlook - be kind to yourself, do life's essential things but consider rescheduling your "nice to have" tasks for another day.  (Don't admonish yourself about it, just learn how to find ways to rebuild your reserves ...ready for the next higher energy day of activity).

Anxiety is a word which can cause a lot of misunderstanding for Autistic people, their healthcare professionals and those friends, family members and work colleagues. 

It can be helpful to try and distinguish between general anxiety and social anxiety (because you might find a) people understand a bit more about the general kind versus very little about the social kind, and b) you might find quite different tactics are personally helpful to you depending on whether a trigger activates general or social anxiety.

Whichever type of anxiety presents a challenge; beware that non-Autistic people (even loved ones) often fail to appreciate and understand how long an Autistic person can experience anxiety.  Your typical non-Autistic person is likely to associate anxiety with something the feel in the moment of an event such as giving a presentation or attending a job interview.  By contrast, it is not uncommon for an Autistic person to experience layers of anxiety before, during and after the similar event.  This is your clue to, at your own pace, start to explore what support strategies might work for you to address coping better with each of those three phases (before, during and afterwards).

Many, but not all, Autistic people experience alexithymia (not easy to identify and refine to a more granular level and describe what emotions and the depth of emotion they experience).  Hence the term "anxiety" may not always map onto your current experience nearly.  For example, if someone asks me am I anxious - I might say "no".  At the same moment, if the same person had asked me am I stressed - I might likely say "yes".  Therefore, in my conversation with a non-Autistic person it would probably have been helpful had I a answered "yes" to the anxiety question (you might begin to see how what people ask an Autistic person, combined with an Autistic person's reply can easily lead to misunderstanding / miscommunication and how much both parties need to learn about interactions with one another).

When considering social anxiety: this is likely the area where an Autistic person risks becoming frustrated with how poorly other people (including Clinicians) understand, empathise with and support your needs, coping strategies and reasonable adjustments.  I am still educating myself about this topic and the options for me to explore.  That said, what I have realised so far; other people cannot be telepathic about your social anxiety experience, people do need education about it, you can deploy mitigation tactics which better support you, there is plenty for each us to learn, good people will become your social anxiety wing-person once they understand you are trying your best in facing a challenging situation or environment.

Learning about and adapting to suit your personal Autism presentation is a journey.  You don't need to work on it in isolation.  You remain in control of both the accelerator and the brake pedal.  You can take a rest stop when life's demands a pause and regroup.  You can navigate through achieving acceptance for yourself, finding your purpose and bolster your resilience ...all at your own pace  (nobody should judge you about that - it is not a competition - and the "right" answer is only that collection of approaches which you assess as working well for you). 

There is hope. 

You can harness the energy of your internal battle, learn how reframe things / apply some learning to be able to view a challenge through a fresh lens, and with that knowledge: find what suits you (as you explore the benefit to be derived from understanding more about your Autism and what it takes to enable you to thrive).

Welcome to our Community.

Hi Adam

Welcome to the late diagnosed adults club. It will take time to process and accept your diagnosis. I am over a year into my journey. I am in my early fifties and had all the feelings of regret and grief from missing out. Slowly I came to realise I at least had an answer to why things happened the way they did. That was the first small positive. I hope to be able to find more and more of these positives through time.

Hello Adam I've felt like you all my life , life has been a battle for me too, I'm 55 now and i've only just realized that i'm autistic, I've not been diagnosed yet but i relate to everyone so much on this site.  I am going to have to goto my Doctor and ask to be referred for assessment. I struggled in social situations all my life. I have a habit of drinking too much at parties to cope with my social anxiety and subsequently had alcohol and depression problems since i was about 17 years old. I have spent the last few days dwelling on the past thinking about all the lost opportunities that maybe i wouldn't of had if I had realized or had been diagnosed when i was much younger.  You are still young, now you know your autistic there is help out there for you and I'm sure your life will improve.  This is a great forum I've only been a member 3 days and I feel it is helping me already. Just try to look at the positives,  You have been diagnosed now, your life can only get better from here on. 

I was dxed in 2019 at the age of 62. It's resulted in a mixed set of emotions . The 'I knew I was right' emotion  The irreversible damage caused by not getting timely help and support -frustration, anger,and sadness. The self loathing of 'If only I had moved to be near my daughter earlier I'd have got the diagnosis earlier' . Ironically that was down to the very autistic  anxiety over change. It took a greater anxiety over another change that was going to occur to push me into agreeing to move near my daughter.  It's not always easy, but for sanity's sake I have to live as best I can with things as they are, rather than how they could/should've been with proper help and support.

I'm still trying to work out where I fit exactly on the spectrum. I struggle to identify with good job,own house, etc autistic types  but most definitely I'm not at the other end of the spectrum. 

Hi Adam,

Welcome!

I understand what you are feeling. As others have said, logically, this hasn't actually changed anything about you. You were always autistic. So this information can only arm you in the years ahead. I think you will come to terms with it.

Autism and anxiety are two different things. It is true that around half of all autistic people suffer from severe anxiety (I do, hence why I am still awake at 6am with my heart racing because I'm terrified my fire alarm might go off again for no reason). However, regardless of your autism, your anxiety is still treatable. There are a myriad of medications that you can try, aswell as various forms of therapy if you can bring yourself to talk to a professional. Lifestyle changes can also make a difference. Cutting out stimulants like tobacco, caffeine and chocolate can help, aswell as doing regular exercise (I like yoga as I can do it alone in my front room watching youtube.) I have also just decided tonight that I am going to start trying out various scents to help calm me such as lavender, ylang ylang and chamomile tea.

When there is something I really want to do, or have to do, I acknowledge that my anxiety is there, that it is merely a biological reaction to psychological fear, that it is not (usually) rational, I try to think of the worse possible outcome and ask myself whether or not it would actually make any difference to my daily life, and remind myself I should not let it control me. Sometimes it works and I can push through it. Sometimes it doesn't.

I hope you find a way that works for you, and don't give up hope. Autism can make certain things more difficult, but you always have choices on how you handle the hurdles. 

I try to deal with the anxiety using whatever technique suits the situation, and just carry on.

Other things other than Autism cause anxiety (Current events anyone ;) so collecting "tools" to deal with ones own anxiety is always a good idea. 

It's actually a survival thing, too. 

And once you are less "anxious" Autism isn't really such a big deal as it was.

But diagnosis was a HUGE DEAL for me, and has knocked me off my game for about three years, but I'm adapting to the reality that to accomplish some things I need willing servants.

"Service" is such a basic and well documented human transaction, that I was already engaging in pre-diagnosis (I do things for people, they do things for me, (and for gods sake, when you get somethng really working, DON'T MESS WITH IT!!)

The only real impact is that I need to ask NT people to do stuff that might appear "odd" to them. Meh.

Adam,

I am 51 years old and I was confirmed as having autism just last week, I know what you mean by saying its made everything worse, I was angry, sad and relieved all at the same time.

All my life i was severely depressed and always anxious, never had a social group, was never friends with anyone at work, I saw my work colleagues talking about going on holidays together and I never had that pleasure.

You are young still, at least you weren't like some of us in our 50's getting diagnosed, trust me, that is a whole lifetime of regrets, being diagnosed in one way is the best thing possible as strange it may sound, you know it's NOT you but it's still you but its the new you you are getting to understand.

As others have said to me, it will be tough going through all these emotions but never punish yourself for being autistic. 

I wish you well in your new life journey as I'm starting out on mines just now.

The only good way to deal with the diagnosis really is to do all you can to accept it and make peace with it. After all - not having a diagnosis would not take any of your difficulties away (they were there already) but at least with a diagnosis you can increase your understanding and work out good strategies to help you deal with the things you find difficult. Knowledge is a good thing. It takes time but it is possible to use the diagnosis to help you live a happier and more fulfilled life. 

At age 53 and having been diagnosed later in life in 2021, online towards the end of Covid lockdown, I can relate, as my life before my diagnosis and before my redundancy after 17 years in 2019, although relatively stable, seemed to be falling apart and without a post diagnostic assessment, which I feel is vital in assessing level of autism and appropriate supports required going forward - living alone in the U.K. and being separated from family in Ireland due to Irish Covid restrictions did not help either - your experience just shows how much pressure your generation are under too