Anyone have experience of adult autism diagnosis

[Thinkidbetterleave]

Have NCd for this. If anyone has any advice or experience, I'd be really grateful.

I am 38 and have known that something was wrong for a long, long time and it's only recently occurred to me that I might be autistic. The reason I didn't think I was is because I am a very empathetic person (sometimes overly so) and always had the stereotype that autistic people didn't understand emotions in mind. However, I have read a bit more about autism in women and have seen that empathy is actually very common, as is having relatively good communication skills.

I have above average intelligence, which I think helps a lot with masking symptoms. It has become second nature and I think I appear relatively normal and competent to the world (maybe a bit reserved or aloof but essentially normal). When I was at school, I was extremely quiet and shy and had no episodes of disruptive behaviour. Despite this, I have struggled a lot for a long time with social situations. I don't have many friends and the ones I do, I feel that they don't really understand me. In the past, I have been the target for bullies at school. I would also do stupid things when younger to 'fit in' like drink to excess or have unprotected sex. It wasn't because I wanted to do that but because I thought that people would like me more if I did. I tend to feel like I am acting a role rather than being myself with other people and I have a constant sense that people would rather spend time with others than with me.

I have had a few instances of 'new starts', like going to university or moving to a new town for work. Even though I am leaving my past behind (bullying etc), there are still problems, which makes me think that there is a reason why I come across as different to everyone I meet. I have also had instances where friends have said they just don't 'get' me and then stop bothering. I genuinely prefer my own company and need a lot of time to recharge after social events. I have a lot of feelings but cannot really communicate them.

I have been diagnosed with depression on at least two occasions and given SSRIs both times (but have suffered undiagnosed at other times in my life, including having suicidal thoughts). I have attended counselling and hypnotherapy. None of it seems to make much difference to how I feel and the low-level depression is always there. Now that I have read more about female autism, I wonder whether it's not depression that I have after all. Oddly, since I have read about autism, I feel weirdly accepting of myself. I no longer think of myself as a failure or a loser but as having a differently wired brain that I cannot change. I realise that the things I thought I needed to do (eg get married and have a family) would probably not suit me but that I can go a different route, such as having a partner but not living together for instance. I also suspect that both my parents are on the spectrum (in different ways) and my childhood wasn't great so I really would not want to pass that on to a child.

I guess I don't really need a formal diagnosis for anything other than peace of mind. If I do have it, I am high-functioning. I have a lot of qualifications and work in a competitive career where I am fairly successful. I don't need any assistance on a day to day basis and am financially independent. However, I would like to know for sure and so that I can maybe access counselling that is more specific to my needs. I think that because my symptoms are not debilitating that my GP probably wouldn't refer me on the NHS so I would be looking to go down the private route. If anyone has any information about prices or what sort of assessment I would need, that would be great.

Apologies for the essay! Thanks in advance for any replies.

Should also say that I have done those online tests for it and my score says that it is very likely that I have autistic traits.

Hi, your post mirrors my own experience exactly and I was officially diagnosed privately last month.

My first recommendation is joining the UK women with ASD group on Facebook which welcomes those self diagnosed as well as those with a formal diagnosis and is a great place to talk to similar minded women and get recommendations on private diagnosis options. I also recommend reading sarah Hendrickx "women and girls with autism spectrum disorder".

Thank you! I will definitely check out the facebook group and the book. Wow, it feels like a relief already to know that I am not the only one who feels like this. Thank you.

I could’ve written much of your post OP, except the bit about a successful career. I am excellent at masking generally, but work is where it falls apart for me. I was Diagnosed privately 3 years ago aged 40. I sought out diagnosis for validation but only afterwards was really able to see the true effects I had experienced - like the final piece of a jigsaw falling into place. Agree re the fb group mentioned. There are a lot of great ones out there who can offer recommendations local to you

Thank you EssexLioness. It's so helpful to know I am not alone. Well, I wouldn't say I am super-successful... I am sure I could be more successful than I am but, to the outside world, I think I am doing okay. I have joined the FB group now and will have a look tonight. I can relate to what you said about a jigsaw falling into place, even before diagnosis. Just thinking back to situations that I went through where I blamed myself for being rude/weird/awkward, they make much more sense now through an autism lens. I think it also helps me see my own limitations and means that I am not trying to model myself against something impossible. I thought that maybe a diagnosis would help some of those around me to understand me better too and not take it personally if I don't want to go to things.

Well you’re more successful than me, job wise. I am very part time self employed along with some voluntary stuff on the side. Work politics eventually get to me, along with the noise/ sensory issues of working alongside other people. I was a high schiever at school, but can’t handle trades work environments.
Totally agree re the autism lens. I used to be very self critical and had dreadful self esteem from constantly masking to fit in, but never quite being ‘normal’. I always questioned what was ‘wrong’ with me and why I was so weird, stupid, over sensitive etc. Now i have my confidence for the first time, as I don’t see myself as weird, just different and that’s ok. In fact, I think I’ve done pretty well considering the added difficulties of being undiagnosed autistic, and misunderstood all my life. I am very honest and realistic about my own limitations and am more protective over my time/ energy. If I feel unable to cope with a situation eg being invited to a party I will be honest about the fact that I will be unable to cope. I don’t force myself to go and then fall apart afterwards, or panic just before I am due to leave so make up some excuse. I find myself masking much less than I used to and I accommodate my autism as best I can to live a healthy life. My diagnosis and realising beforehand that I was autistic, helped give me the confidence to accept and care for myself and see my quirks as a positive and interesting thing, rather than something to hide.

I hope you find the same comfort and validation

Oh and one more thing (sorry)! Don’t worry about masking infront of your assessor. I naturally did this and worried that they wouldn’t see past that but they did. Not every psychologist is experienced in diagnosing women, and as I am sure you know it can present very differently in us, so it is important to find someone who is experienced working with women. Sadly I know of several women who have been misdiagnosed because they are being assessed against the more traditionally male traits, so do not tick many of the boxes.

Thank you so much for all your insight and advice. Yes, I’ve definitely started thinking differently - I have done pretty well considering that the world is built for people with different brains to us. I wonder whether if I had been born twenty years later if it would have been picked up earlier.

One thing I thought of as well was the first lockdown. It was weird because despite all the stress and worry, I also felt relief that the world had more or less stopped or slowed down. It felt like I had been given space to think and didn’t have the stresses of normal interactions. It was also quite interesting how extroverted people really struggled with the lack of social interaction whereas I was like ‘welcome to my world!’

I also find office politics exhausting. I used to be a lawyer which was the worst thing for me! Stress, constant interaction with people, long hours, open plan, high pressure. I almost had a nervous breakdown when I was 29 and quit. Now I work for a university and it’s much more flexible, I have my own office where I can shut the door and I can work from home a lot.

I don’t have much to add from what pp’s have said, but good luck OP.

I have ‘high functioning’ autism and was diagnosed as an adult. I used Clinical Partners, and the whole process was quick and efficient. Although I think their prices have increased since I had my ASD assessment, but if money is not an issue would definitely recommend using them

Placemarking. Good luck OP

Thanks so much asd99 I will have a look at them.
Thanks CarolNoE.

Just to update, Clinical Partners look like my best option in my area. It’s expensive (nearly 2 grand) so I will save for a few months but then I will contact them. I have decided that I’d like to know either way.

Another funny thing is that I used to think I couldn’t be autistic because I was really good at reading people. I have since realised that that’s not true 😆. I did one of those facial expressions test and got most of them wrong! I tend to have a fear in the back of my head that people I am talking to are getting bored but I’ve realised I can’t actually tell so I often cut the conversation early just to be on the safe side.

I also found a checklist of autism in young girls from a local authority and it sounds so much like me. Quiet, well-behaved, few friends, passive, really messy desk/locker, very early reader (age 3), couldn’t understand why lots of children didn’t want to be friends with me, happy to play by myself or sit and read. I also remember that I used to stutter as a child and would launch into long monologues with family or close friends. Of course that wasn’t seen as an issue in the 80s and 90s.

I remember when I started uni and I had several experiences of where I met a group of people who then ended up being friends with each other but not me - for example, I met three other girls in our first lecture and none of us knew each other and we all chatted and went for lunch. The other three ended up close friends for the rest of the course but never really spoke to me again. That same thing happened several times with most of the people I met during freshers week. They would make lasting friends whereas I wouldn’t.

I’ve also realised that, outside family and a few friends, I feel better in groups of 3. With just one person I feel stressed about keeping the conversation going whereas with one other person there, I can happily slot into the conversation. A bigger group gets quite stressful though. I used to dread the teacher telling us to work in pairs or large groups. Also, job interviews with group tasks and assessment centres were terrible for me.

I also remember being absolutely terrible at PE. I could run fine and was relatively fit but i had no coordination and was so bad at team sports. I used to forget my PE kit on purpose and my teacher gave me a D for PE - the only one in a sea of As. As an adult, I have preferred things like yoga, walking and weights for exercise, where there is no expectation of competition and you can set your own pace.

I know I haven’t been diagnosed but the relief of it all making sense is immense. I used to think that the reason for my issues was that I was a horrible person. I even used to make ‘resolutions’ that I would start acting like what I thought a kind person would do but I could never keep it up. I remember one teacher at school telling me that I was a horrible and rude person and not as nice as my sister (I can’t even remember why) and I took it to heart. Feels good to know that that probably isn’t true.

Seeing my parents through an autistic lens is also helping. I used to think that my dad was a narcissist but I realise that he probably has autism. He has always had hobbies that he is fanatical about. The latest is birdwatching and he has bought 5 pairs of binoculars! He and my mum divorced a long time ago. I think my mum is also on the spectrum. She can be incredibly rigid and stubborn in her thinking and she once ended a 14 year relationship with her partner incredibly abruptly and couldn’t see how much of a shock that was for my stepdad. When she was with him, I could also see her acting out a role. It makes me much less angry and resentful about my childhood to realise that they probably couldn’t help it.

Apologies for yet more rambling. It just helps to put it down in writing.

Glad you’ve found somewhere for your assessment. I can relate to everything you wrote, except the bit about your parents. I’ve never thought about it before but I’m the same about groups of 3 bring the most comfortable - interesting! Good luck going forward and feel free to continue updating on your progress if you wish

Just reading your last post has unlocked some memories of mine, OP I can relate so much, I could’ve written it.

One thing I liked about my assessment was being able to speak openly and have someone listen to some of my odd thoughts. It was almost comforting for me.

No need to apologise for rambling, I think it’s a good idea to write things down too! It’s what I did before hand for the assessment

Thank you both! It makes me feel so much better knowing that there are people out there who can relate. I genuinely thought I was the only one who felt like this.
I’ve started to keep a list of things I remember that might be relevant for my assessment. It’s 3 A4 pages already, 😂.

I listened to the writer Holly Smale on woman’s hour the other day. She’s a similar age to me and has just been diagnosed and lots of what she said resonated. Also about dating - she says she does it every few years for a couple of months and is then so exhausted that she has to leave it for a few more years. I so relate to that and do the same. I get to a point where I feel I have to try dating again. It’s so hard though - I hate chit chat and find it really hard to tell if people like me. I remember having one boyfriend who ghosted me but I just didn’t get it and needed him to tell me straight that he didn’t want to see me. I spent ages trying to work out what I’d done wrong as well. Dating sites feel like a chore but I think in the future, I will be armed with the knowledge of why I am like I am and will be able to navigate it all a bit better. Holly also said that ‘I am not what men expect’ and that’s so true for me too. I am relatively attractive, educated and articulate but there’s something strange that puts people off and I can see why now. I used to think that it was because I wasn’t pretty enough but it’s nothing to do with that. I could be a supermodel and it wouldn’t make much difference.

Hi OP, did you manage to get a diagnosis or at least get on a waiting list? I've for years thought I could be autistic, a lot of reasons similar to yours, and I may try to seek an assessment but have no idea where to begin really.

Just checking in to the zombie thread. OP, if you are still here I'd love to hear what happened. You could be me, and I have a GP appt tomorrow to start the ball rolling for a diagnosis for me.

Is this a zombie thread …can we start it up again..
I’m half way ,more than half way through an assessment for autism.
My doctor referred me ,after he refused to let me try yet another anti depressant,he said there was none left to try ,that I hadn’t had already and that hadn’t worked ,,and maybe it was time to go down another path..I know deep down I have it ..3 of my children have autism ,my husband is undiagnosed and wants to stay that way ,where as I’m desperate to know ,and have answers as to why ,why why ..everything.

@TonyThreePies

Just checking in to the zombie thread. OP, if you are still here I'd love to hear what happened. You could be me, and I have a GP appt tomorrow to start the ball rolling for a diagnosis for me.

Good luck.. I'm yet to book an appointment but I know I should. I'm just worried that I won't be taken seriously. Are you bringing a list with you? I've made a (long) list of things that I want to discuss with the GP to back me up as I know when I get there my mind will go blank!

I hope it's ok to resurrect this thread?

So, I had a double telephone GP appt today to talk about something else more pressing and asking about a referral, but they were running late so I only got the chance to talk about the other issue. I don't know if the referral appt has gone back into the system or has been disregarded. I'm feeling very upset about it tonight as I'm going through an obsessive phase atm which is driving me to distraction.