Benefits of a formal diagnosis?

Has anyone tried Acceptance and Commitment Therapy?

Hi I am 52 and awaiting assessment through RTC. I do now self identify as autistic and I have spent quite an amount of time researching ways to make my life easier, by using noise cancelling headphones a lot of the time, tinted glasses when outside or in a bright room, I am cautious to arrange social activities when I know I will be exhausted afterwards. I am trying to unmask more than I already do (it turns out a few people I know have always thought I was quirky due to the way I behave). But I am waiting for the assessment before I tell my workplace and my children. I just feel that piece of paper will protect me a little. I might be naive about this but at work I am concerned about how people will view me if I say I’m autistic but I know if I am diagnosed by a professional I should be protected legally from discrimination?  I have scored incredibly high on all tests I’ve done online, I’m just astonished it hasn’t been suggested to me before now. 

I have had plenty of experience of CBT, all of which happened before I knew I was autistic. I found it useful, but it never helped deal with some of the deeper issues which I now know were caused by trying to fit in a non-autistic world.

I have piles of old CBT worksheets, some of which have been useful to help me move on since diagnosis. I just work at  these on my own now.

I had initiated talking to a counselor at the same time I decided to pursue a diagnosis, mainly as I was at a point where something needed to change as I clearly wasn't coping. 

It was interesting as by the time I saw her, she said she'd sometimes has clients where they realise they are autistic but she says you only need to do a diagnosis if you need it for work or personal acceptance, otherwise she doesn't push people for one (she doesn't diagnose but has experience with people). So yeah, that is an option. 

I've only had a few sessions and have mainly just been telling her my baggage and she's helping point stuff out, I don't know if that's CBT, but speaking to someone is helping I think.

I didn't really feel like I could tell people I was autistic until I had a formal diagnosis. I felt like a fraud. I also wanted the security at work of being able to ask for help and knowing I had some kind of protection for my needs.

Rather than getting a formal diagnosis, I’m thinking about just getting some CBT counselling. I have tried CBT before but never through the lens of being autistic and never with a counsellor who specialises in autism. Has anyone tried autism- directed CBT and has it helped? I feel trapped in thought cycles (overthinking) and am struggling to unmask fully. Would be great to tap into others’ experiences. Thanks 

A maybe useful analogy...

Last year I had an eating disorder relapse and started being more aware of disordered eating in everyone else. In my head what I was doing wasn't serious because everyone else has food rules. 

The dietician helped with this observation: everyone has food rules but not everyone is passing out half way up a hill because they can't break their food rules and they don't let their food rules dictate all other aspects of their lives.

I'm using this example because I think it's easier to explain. The point is, iny head, autism is a spectrum and so everyone might 'be a little bit autistic' but it becomes ASD at the point at which it is interfering with your ability to function. Heavily masking probably fits this criteria. 

I've also noticed that my closest friends and family have autistic traits... That's probably why we're able to get along. A few initially reacted the same as yours, because they were comparing themselves only in terms of the traits that I wasn't hiding from them.. traits they share. i recently discovered that a friend of a friend of mine who works in social work had always just assumed that I had already been diagnosed.

I'm in my 50's and was just diagnosed with autism a few months ago. 

I have suspected that there was something going on for about the last 20 years. My other half has been telling everyone that I have Aspergers since I did an online test all of those years ago. 

I like to think that I know myself pretty well. So I know where I have issues and how to manage them. The main reason that I went for a diagnosis was because I could get it done through my employer for a minimal cost. Which i thought might be useful in keeping myself employed at a time when the firm is looking to offload people and even if i lose my job I can now ask for reasonable adjustments at interviews for future roles. As i have huge anxiety with interviews so hopefully it will put me on a level playing field assuming that I get any interviews, given that not as young as I used to be...

You make a good point:

Knowing for sure gives you permission to go and investigate and know yourself better, without worrying you are mistaken and exaggerating normal behaviour. It allows you to really believe what you find.

Thank you, All, for your thoughtful and thought provoking responses. My wife thinks I am autistic, which prompted me doing some online tests. I scored an average of 38 in the ASQ test (did it 5 times!). I did some other tests which confirmed definite autistic traits. Has anyone else done these tests and gone on to get a formal diagnosis? Does a formal diagnosis require input from a close relative? 

I told my 2 closest friends and my mother that I suspect I'm autistic, but got the response that everyone is a bit autistic and that the whole field is made up and if you pay someone to diagnose you, they will give you the diagnosis of autism regardless of whether you are or not. I found this very deflating - made me feel that they don’t really know me at all. Or maybe I’m just a very good masker.

But masking is so exhausting. I’m wondering if a formal diagnosis would give me the courage I need to unmask and just be me. It would be so liberating to not feel like I had to keep acting neurotypically. To just be me. Finally!. 

I went down the formal diagnosis route purely to clear up all the misdiagnosis labels I'd collected. There was something really powerful about the psychiatrist clearly stating "you're autistic, this is your why" and how quickly other clinicians have stopped what felt like gaslighting me over my 'symptoms'.

I will say that the assessment report itself was not immediately helpful. I don't think the assessor entirely understood the extent of my masking and the fact that I've been misunderstanding myself for decades. For example, for 30 years I've sometimes referred to not liking supermarkets and other people have replied "me too" so I just assumed they had the same experience and just got on with it. Only recently discovering that they didn't mean they too had melt downs in their car everytime they came out! This complete lack of normal reference point in my head made the assessment somewhat flawed as I continued to misrepresent my own experiences based on what I'd assumed was 'normal'.The report still came back with a diagnosis and that led me to drop the imposter syndrome and do more research which has been more helpful than anything written in the report!

I’m so sorry to hear this- I’ve also had some bad experiences after telling some people but overall I am glad I got diagnosed- I think maybe there are two points here 1) should you get diagnosed? And 2) who should you tell? I wish I had been a bit more cautious about the telling part. 

It depends on where you are at in your life. Especially as it relates to family and relatives. Diagnosed at 52. A day doesn't go by that my SO doesn't berate me for the limitations of autism... Its a weapon always at the ready.... If you weren't so autistic maybe we could have friends... if you weren't so autistic maybe you could have been present for your children... if you weren't so autistic maybe you could do something with your life. Why don't you try and get fixed? And on and on. So for me I regret getting a formal diagnosis. If you are surrounded by loving family members full of grace and patience, or are a loner in this world without being shackled to ones who look for weaknesses and try to gaslight any remaining sanity out of you, then a formal diagnosis may not be so bad. 

I’m in my 60s and diagnosed nearly a year ago. I’m glad I sought I diagnosis because it has removed so much self blame and guilt over how my life has been. I have much more self-awareness now and feel more whole as a person. I’m retired, so I didn’t consider potential benefits of diagnosis for my working life.

Follow-up support is very much area dependent. I was fortunate in my area and I had some support in the form of one-to-one talking sessions and referral to organisations that could help with some of the executive function challenges. There isn’t anything ongoing for people like me, nearly everything is geared up for younger people. 

I'm 64, female, waiting for a diagnosis.

I guess I had several reasons for seeking a diagnosis, I don't think it will make much difference to the way I live now and I don't expect any support afterwards.  I'm lucky in that I am at a stage in life where I can arrange things so I have time to recover if I have to interact with people a lot.  It's made a lot of difference just calling myself autistic without a proper diagnosis but I did finally decide to go for it after hesitating for a while.

My first reason is perhaps a strange one.  I've seen both my mum and dad with terminal illnesses, and they were treated well by the medical staff.  But maybe a little too touchy feely for what I could cope with if I was in the same situation and unable to express my needs. I cartainly would not want to be hugged and kissed by the care staff in the way they were, and I hope a formal diagnosis might help with that.  I know I can write a formal statement of how I want to be treated anyway, but want a diagnosis to back it up and make it a bit more understandable for some care staff.

Secondly, we moved to a new town several years ago.  When I started to get to know people I found some were telling me that they were autistic, or knew a lot of autistic people or had autistic family members.  I was slow to catch on, but later thought they were trying to find out if I was autistic myself.  But not having a formal diagnosis, I just did not reply.

Lastly, I know I can self-describe, but I would like to be sure.  I have several friends who are sceptical anyway about neurodiversity, so I again I want a way to say "I'm not imagining things."

Much of this has probably been said by others, but just wanted to share my experience. I was self-diagnosed for a while before I sought a formal diagnosis. I was in my early 40s when I was diagnosed and it made me feel validated. It didn't really change my day-to-day life, the challenges are still there as they always had been, but it has stopped me second guessing myself (which was something I started doing when bullying started in secondary school and then just went on from there). And it's made me look for ways to be more open about what I struggle with at work instead of taking on things that cause me excessive stress or that I just can't do, which was previously taking a huge toll on me. My diagnosis also led me to this community which is helpful being a part of. Obviously a formal diagnosis is not for everyone and plenty of people are quite happy being self diagnosed or being an ally of autistic people, so it really depends on you. 

Hi, a formal diagnosis can help you ask for reasonable adjustments at work, if you think you would benefit from them. For some people it also helps to have an official diagnosis as they want that external validation that that they are autistic. Depending on where you live you might be able to access additional or specialised support but I think that is quite unlikely - I personally wasn’t able to access any when I was diagnosed as an adult. I think it’s a very personal decision. I was struggling a lot with physical and mental health (digestive issues, issues around food, burnout etc) and had been misdiagnosed with a lot of other conditions and I wanted answers. I was initially very skeptical when someone suggested I might be autistic- I just didn’t know anything about it and just thought this was going to be the latest label that wouldn’t fit but when I started looking into it a lot of things started to make sense. However I was filled with feelings of uncertainty and impostor syndrome which is one of the reasons I went for a formal diagnosis (though a formal diagnosis won’t really eliminate those- I still sometimes have moments where I question if they made a mistake when I got diagnosed even though I am coming more and more to terms with my autistic identity). As I had other misdiagnoses I also wanted to have the appropriate diagnosis on record in the hope that that would help when interacting with medical professionals- I naively also assumed I would be able to access more specialised support but that didn’t turn out to be the case. I was only 25 when diagnosed- I was working at the time but struggling and I also wanted to go back to uni for a PhD- I thought it might be useful to have a formal diagnosis should I ever need any adjustments. I think the most important part for me though was that I wanted to understand myself better and I wanted some answers- I think if I had self identified only then I wouldn’t have been at peace and I would not have been confident enough to believe that I am actually autistic and I would have constantly questioned it and it would have made it harder for me to move forward and build a life that works for me. Since I have been diagnosed my mum and I have realised that she is most likely also autistic- however she has no desire at all for a diagnosis- she is very at ease with who she is and she says she has long known she’s an alien and that to her it doesn’t matter what the name is for it. She is now self employed and has no need for a formal diagnosis in terms of adjustments at work. So for her it’s a very different situation and she’s very happy with how things are. She’s not looking for answes either as she has accepted herself the way she is and it doesn’t matter to her- I wish I could be like that :). Not sure if any of this is helpful but I thought I would share these 2 personal examples of feelings towards seeking a formal diagnosis. 

hehe - I bounce around it like a roller coaster myself Stuart333 .  Ah well, strap in and enjoy the ride I figure :-)  hmm...  unless I can learn to fly one day...

The allegory and the transition curve are good. I followed all the steps on the curve.

The allegory is useful in that it says you need to leave your comfort zone to see a different perspective.

Quoting this Individual change in times of social crisis: Fisher’s Personal Transition Curve | The Oxford Centre for Life-Writing  on Fischer 

"Fisher suggests there are essentially three routes out in the end. One is disillusionment, another is hostility and the third is gradual acceptance. Which one becomes our own personal end in coming through this change will depend on many factors, some of which may lie largely outside of our control."...

"even going back to the drawing board and rethinking how our lives could be lived in a potentially less frenetic and globalised world that might not be as bad as we think. These are all potential ways we could enable ourselves to feel more in control of the outcome of current events and, hopefully, move on to the upward part of the transition curve into acceptance."