Hello I’m new to the forum. I’m looking for advice and am interested to find anyone who has had a similar experience to me.
I am a 27 year old female and am considering seeking professional advice as I believe I have traits and characteristics that would place me on the autistic spectrum. It is something I have wondered about for a while but have put off going to the doctors.
Can anyone share their experience of being diagnosed as an adult, especially any other women? Was it difficult to get the right help and advice? Did your GP take you seriously? Is it a relief to have a diagnosis?
Heed my warning - be careful what you wish for!
Unlike many stories I've heard, I found the actual act of getting diagnosed relatively simple. Okay, so I had to wait about six months to see the diagnostic Psychiatrist, but that's just NHS waiting lists for you. And, whilst the diagnostic interview was meant to last a few hours, The Doctor had confidently diagnosed me only 22-minutes in - simply saying we would go through the rest of the process as a mere formality!
All my problems started after diagnosis. And to be honest, at this stage in my life, I have to say getting diagnosed was one of the worst things I've ever done.
Whilst there are admittedly far worse things in life than being diagnosed with Asperger's, I was... for want of a better word... devastated. And, unlike certain conditions, disorders and illnesses (forgive me), there's no cure... you can't fight autism. So, diagnosis robbed me of hope; and my life has drastically changed (for the worse) ever since.
A lot of autistics I've spoken with have expressed a sense of relief in getting an official diagnosis. So, I suppose it all depends on your particular character to begin with, and what you expect to get from a formal diagnosis? But once you've crossed that line, there's no going back... as you cannot be undiagnosed.
Tread carefully, and the best of luck.
Evan said:Whilst there are admittedly far worse things in life than being diagnosed with Asperger's, I was... for want of a better word... devastated. And, unlike certain conditions, disorders and illnesses (forgive me), there's no cure... you can't fight autism. So, diagnosis robbed me of hope; and my life has drastically changed (for the worse) ever since.
Believe me, I understand this position, Evan. I fight against it every day. But my diagnosis offered me a different kind of hope. And I cling onto it for dear life.
Thanks Martian. Alas, I have yet to find that place.
I see a lot of Aspies who wear their autism with an air of pride; who are happy with their difference, have found their unique strengths, and who boldly claim that they'd never change their diagnosis for anything in the world (see my previous post about "would you take a pill if it could cure you of autism?").
The problem is, no one can tell me how they got to that state of acceptance, pride and positive self regard. A year and a half after diagnosis, I just see myself as incurably broken, isolated in difference, and looking at a very black and void-like future.
Before diagnosis, I always kinda new I was a bit weird and had idiosyncrasies. But I secretly harboured hope that I'd cut the crap out, figure it all out, and some day be my better self. What diagnosis did for me was confirm that all the worst parts of me were in fact something fundamentally flawed beyond character quirks, and that this was going to be lifelong and without cure. Like I say, diagnosis robbed me of hope.
Evan said:But, get told you're autistic? Nope... you get the diagnosis and then booted out the door and told to hopefully enjoy life as you somehow magically try to figure it out on your own!
a rule book.,, a wiki page to living, yes.
have you ever read the following...
Evan, I'm one of the "Aspies who wear their autism with an air of pride", and I think I can have a go at explaining how I got here, if it's any help. I was late-ish diagnosed (not quite adult, but only a year off) and didn't learn to "own it" until I was well into adulthood, so I pretty much fit your criteria.For me it was after I was in an abusive relationship situation in my early 20s. I was left genuinely broken, and things were very much "fly or die". I thought about it, I didn't want to do the latter, so I completely rebuilt myself. I did online CBT, put real effort into changing my way of thinking. I learned to be vulnerable in front of people I was close to and stop letting my emotional wellbeing be totally dependent on what I thought other people thought of me (which had always been my main obstacle, really- I tried too hard to be accepted, because I was scared of being alone and therefore vulnerable). It was incredibly difficult and it took time, but hey I'd reached the bottom; nothing to lose and all to gain. Things I discovered specifically relating to the autism;* There is a certain freedom to knowing and accepting that your differences are inherent in your make-up, not something you CAN change. You can, with effort, just let go of the idea of being like everyone else and no longer expect yourself to change. And at that point, you think why should others expect you to change? And when you realise that, you can say "OK, I'm going to be completely myself, and the people who react positively to that are the only ones worth spending my time on". * Having done my research, I can now recognise a lot of the things I take pride in about myself as being directly linked to my autism. -I'm eloquent, because I am intrinsically attentive to detail.-I know a LOT of obscure things about the subjects that currently interest me or have done at some point in my life and I seem to have a much better memory for these impressive "fact of the day" bits of knowledge than any neurotypical people I know. -I'm extremely resilient, because I have had to be due to my experiences growing up autistic. It's not a happy thought per se but I'm proud of it in hindsight; I'm a survivor.-I know my own mind and don't change it due to social pressure.-I can think of solutions to problems other people just don't see because my brain is wired differently. * Autistic people have a lot of qualities that make us excellent and interesting companions (see above). So you're not selling yourself to them, because you know you're a good person to have on the team; you're the one bringing something different to the table. They are selling themselves to you, and that mindset is so much better for your mental wellbeing.* At the end of the day, my aspergers ended up being a very useful "good-person-filter". When I stopped masking (and I will emphasise that it was a VERY hard thing to do, breaking a habit of over 20 years) I managed to create close, reciprocal friendships with an ease that really surprised me. A fair few of them, in fact. More importantly I stopped letting people take advantage of me because of my social insecurities.* In my experience, when you are very open and matter-of-fact about something like autism, you find that people usually react by imitating that matter-of-factness. This is one of the great secret tricks of NT psychology; they are built to conform to a perceived social norm. So even talking about your autism just becomes a normal thing, because they subconsciously assume it must be if you're treating it as such! Bloody brilliant.There are always exceptions, but I have only met one person who didn't simply take the information on board and use it to make our interactions mutually easier (the people like that are also much easier to avoid as an adult than those who bullied me for being "weird" as a child). Some were even very curious and eager to be educated on the topic. Many were relieved to learn that the fact that I wasn't reacting to them socially in an expected manner wasn't because they had offended me somehow, which I thought was ABSURD (though if I think hard about it in hindsight I guess it does make sense)!That's everything I can think of right now. I hope it's helpful to see a bit of the process and reasoning behind the attitude, and that you find your way out of the void you describe. x
Thanks Emma. That really is useful and good advice. Indeed, I'm thinking you may be the future author of "The Rules to Being Autistic..."!
The one thing I do still try and do... chronically... is masking. Every day I shower, comb my hair, and wear suitable clothing... and finally put on my real costume - pretending to be normal. I actually said to a Manager in an important workplace meeting this week that most colleagues don't think to offer suitable sensitivity around me when talking about autism because I simply don't look autistic enough in their eyes. I mask too well. They'll often talk disparagingly about other autistic colleagues right in front of me, and I'm thinking "do... do you not see me standing right here?"
My problem is that I'm surrounded by NT's of my age and socio-economic group... my peers... and I can't help but continually compare myself to them. Whereas they're enjoying high-flying careers, getting married, having kids, developing valuable life skills etc... I'm failing on all those comparable life measures. Yes, I have autism, but it kinda feels like a weak excuse. It doesn't matter why I'm failing, the point remains that I'm never gonna have those things.
How can anyone see autism as a positive when you feel it's the one thing that's robbed you of all those opportunities... it's robbed you of hope?
Thanks Elephant. Yeah, my Therapist gave me a copy of that to read. I thought it had a lot of potential, and was certainly better written than many of the allistic books I've read. But to me, it felt merely like an opening chapter or introduction... like there was so much more to be said.
It's such a tragedy that he died so young.
There's a kind of remake of the Autistic Survival Guide here:
We could all contribute to improving it, probably.
Does it include an NT Babel Fish?
Thank you for the link... your last sentence is particularly pertinent
Hi Emma: do you have a link to the online CBT (cognitive behavioural therapy?) you found helpful? Thank you.
Hi TenaciousT, the site I used was called MoodGym; at the time it was free to use but unfortunately it has become a paid service since then. There may be free ones out there if you search but here is MoodGym in its current form. https://moodgym.com.au
I'm glad it was helpful, Evan, and flattered that you think I might be able to write "the guide"! I do understand the comparing yourself to others and the feelings of envy and sadness you seem to be experiencing when those around you seem to have all the things in life you've not found for yourself yet. It is genuinely soul-crushing when that's all happening around you and you're being left out. I would like to attempt to offer you some hope and some further advice, if I may. I have a wide network of real-life friends and family who are also on the spectrum (I seem to subconsciously gravitate to other aspies!) and many of them are examples that it's not necessarily all doom and gloom for us. My other half's sister is autistic and has a partner and two kids (my much-loved niece and nephew, both autistic too!). One of my autistic friends is a research scientist. A couple are married and a couple more (like me) in happy long-term relationships. Also my grandmother was, in hindsight and though not officially diagnosed (the facilities just weren't in existence then), blatantly on the spectrum and she had two sons and four grandchildren, including me! I'm not inclined to have kids now I realise what that entails- far too noisy and unpredictable for me! Plus the body-horror that is being pregnant; nope. That said, I've managed to find a job I enjoy and am good at (it's not very well paid but it supports me and my many pets and that's all I want) and I'm finally in a stable, loving relationship.Now what I have observed is that things do seem to take more time and effort for us than NTs; it's rarely a case of things just falling into place like it can seem to for them (though I sometimes suspect that's a perception rather than a solid truth) and there are often very trying times in between. My story of being taken advantage of by a predatory person as a young adult is far from uncommon in this community. Yes, that is a deeply unfair thing. And yes, you're right that life skills do come harder for us. You should see the state of my bedroom! Atrocious! I still have days where I feel like I just can't cope with existence and end up in tears or a meltdown. Sometimes I have to get a take-away or get my OH to cook for me because I just don't have the energy to feed myself. On the whole, though, I get by.But what I'm saying is, in the bluntest way, if you want certain things in life, there is no reason you can't pursue your dreams. Certainly not autism. Autism isn't what's robbing you of hope. What is very likely (and deeply ironic, really) is that your masking is what's working against you achieving the things you want to achieve in your personal life.It sounds like a cliche but you really do need to give yourself a chance if you want other people to do the same. You can't find the right "person to be in a relationship with" or "fulfilling, stable job" until you drop the mask, because until you do people will never actually see you or what you have to offer; they'll see the disguise you've put on, as you put it. What happens when you force yourself to do everything with the disguise on is that it ends up becoming a necessity, because you are building a life on inherently dodgy foundations; you become trapped in the mask forever or eventually you finally lose the ability to keep it up (very likely, because you know as well as I do that donning the mask is exhausting) and things fall apart.I have one close friend I made in the 21 years before I stopped masking. One. And I'm conscious of the fact that I'm very lucky to have done; she's just an exceptional human being and that's no exaggeration. When I made that conscious decision to act like myself and went to a social group based on things I was interested in for their own sake, I made six genuine friends in three months. They're all still really close to me and one of them has been my partner for five years. That is the power of not masking and that is what made me confident enough to forego the disguise even at places like work. I'm not saying it's easy at all. It's really scary to give up pretending to be "normal" because it makes you feel so vulnerable and open to rejection, but I believe it's an essential step in order for us to be truly happy. You just can't enjoy life if you are putting all your effort into pretending to be someone else. I can't, at any rate.If you feel super brave, try giving it a go when people disparage your autistic colleagues; stand up for them. Do a bit of educating, because education is the only antidote for ignorance. Say "Well we sometimes do X, or feel Y, because of Z". So that's my advice to you. Sorry for the essay and the mush that seems to have crept in there! I really do hope you get what you want out of life, Evan. It sounds like you've had a rough time of it so far. x