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?
Hi fieldofdaisies - and welcome!
I'm not a woman, but I'm happy to pass on my experiences
I was finally diagnosed 3 years ago, at the age of 56. I was seeing a therapist for a while following a breakdown, and it was she who first suggested looking into an autism diagnosis. I took the Baron-Cohen AQ test (link at the end in case you haven't taken it yourself) and scored 42 out of 50. The 'pass mark' for a strong possibility of Asperger's is 32. I went to my GP with the result, plus back-up from my therapist, and was initially referred to mental health services. They turned me away (in my experience, that's not the best route to go down). My therapist persisted, though, insisting that I was referred instead to specialist autism services. My GP agreed to this. Some time later, I had a follow-up visit from an assessor, who asked me some more in-depth questions before recommending me for the final diagnostic assessment. I had to wait just over a year for that, and about 6 weeks after it I finally got my diagnosis. From beginning to end, on the NHS, the whole process took just over 2 years.
Getting the diagnosis is often double-edged. Overwhelmingly, for me, there was the relief and validation of finally getting answers to all the questions my life had posed. If anything, that diagnosis improved my confidence and my mental health. No longer was I this 'strange' hypersensitive person who found it difficult to understand why I couldn't make friends, didn't like social situations, felt anxious much of the time, etc. On the other side, of course, was the thought that if only it had been picked up years before (all the pointers were there in my childhood) - how much difference might it have made to the course of my life and my development? But I try not to get hung up on that. The past is the past.
Check out the information on diagnosis here:
Autism Diagnosis for Adults
And here's the link to that test:
I was just diagnosed a month ago (in my 40s). I went private as the NHS waiting list is 18 months. In my region (SWest) I could self refer rather than going through my GP, although I did discuss it with him and he supported my referring.
I had taken several online test first to gain an idea of whether i did fit an AS profile and they conformed I did. I would recommend you do a couple of these.
From start to finish my whole assessment process was extremely efficient. I am very glad I did it, and am happy with my 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:The problem is, no one can tell me how they got to that state of acceptance, pride and positive self regard.
Because, for me, there was no other choice. Just as someone who loses a finger or a limb has, in the end, to accept it somehow. I'm not saying it's easy, because it isn't. For me, my diagnosis answered a lot of questions that I desperately wanted answers to. Of course, there's the other side of the blade. The endless 'What if? What if? What if?' But it's too late for that now. I have to move forwards with my life because there's no other way to go. Going backwards, for me, solves nothing. I have to work with what I've got. Again, it isn't easy. Again... it's all I've got. But at least now I have some sort of map to guide me.
I know, I know. And that's why you're a better person than me, as you're trying to capitalise on the specific cards dealt you, rather than give in to despair like me.
I just wish there was some sort of professional resource to help.
I mean, if you're told you're pregnant, you get to go to antenatal classes, get check-ups and medical professionals advising you what to expect every step of the way. Likewise, if you're injured in an accident, you get physiotherapy and rehabilitation etc. 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!
Somebody (a successful, late diagnosed, adult autistic) desperately needs to write a book called: "The Rules to Being Autistic..."
I'm not a better person than you are. Believe me, I dive into the pits an awful lot. But the only thing that brings me out again is the thought that there's no one to help me - so I can only help myself. Which is tough. But my life, if anything, has taught me a certain degree of self-reliance. When I lost my mother, I also lost my closest human being. The only person I could ever go to. There's no one now. But her memory helps me. I say to myself constantly 'Mum would have wanted me to go on.'
Lord knows, though, I struggle. I'm struggling today - because of the thoughtlessness and selfishness of someone I thought I could trust. I ought to have learned by now... there's no one I can really trust, except myself.
I'll see what they say at this workshop on Monday.
PS There are no rules. Unfortunately (or fortunately), you have to make your own. And if other people don't like them - then tough!
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