I am a 54 year old man and have done the ASQ and other online tests and have scored consistently in the autism ranges. A lot of my life experiences make more sense now - including extended bouts of anxiety and depression, insomnia, situational anxiety, introceptive confusion and others. I am wondering now about the benefits of a formal diagnosis. I’d welcome advice from others.
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.
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."
I can answer for myself and give indications of what impressions I have from others Danjo
For me I agree with pietro_21 regarding affirmation and there is also a common thread among other autistic people regarding this I believe.
Benefits of diagnosis depend a lot on circumstances - being able to be more "authentic" can be helpful.
In this respect I suggest look up the "double empathy problem on this website.
I and others have also identified a "triple empathy" issue regarding to learn to empathise with oneself.
everyone's journey is different
After a long wait post diagnosis I started some local NHS provided post diagnostic support last week. They put up what I have since done the research to identify as John Fisher's Personal Transition Curve model.
Here's an image that may give a sense of what is involved in your own personal journey fisher-transition-curve-2012bb.pdf
I have done a quick AI search to see if there is evidence to support this model generally and also specifically for autistic people. Perhaps somewhat predictably I haven't found any yet - tricky to be objective about something so complex or boils down to personal experience.
Plato had a good allegory: Allegory of the cave - Wikipedia that I've been pondering on for a while... typical blooming philosopher tho' answers one question by posing more!
Best Wishes :-)
Hi,
My first post on here : )
I'm 48 and diagnosed ADHD but talkingbto people at an ADHD group I go to made me think about autism and I'm on a waiting list for assessment. I'm pretty sure I am autistic - explains most of my life - but I still want someone to tell me officially.
The biggest thing for me being diagnosed ADHD is that I am much kinder to myself now. I think the same benefit would come from an autism diagnosis.
Hope that helps
Affirmation of self. I am constantly going back and revising my own knowledge of who I am around all of the disruption and trauma that happens in life. This can be really helpful as a starting point to looking at yourself through the clearest lens.
Formal diagnosis is not necessary though, it just depends on the level you are willing to go towards self understanding. I’d say the difference between me now and me before my diagnosis this summer is that now a lot of things which I see as facts, before that point they were rather ambiguous. You cannot begin to make total sense from halfway facts/suppositions (like I always knew or had an inkling because that’s how I felt). Although those feelings are important professional diagnosis verifies any uncertainty. That said it is also in some ways an irreversible position even if you choose to tell nobody it stays with you and upends everything.
I'm not officially diagnosed, I'm just here. Scored high in all online tests and researched enough to have the strong suspicion that autism is the best explanation for my life lasting problems. There is a situation right now that I might be sent for testing but as for now I don't know yet. If its just for information- it's up to you. But it's all complicated and stressful. Some people get benefits, others not at all. Just left alone with a piece of paper
Hello, it's been discussed here before. It is largely for personal knowledge and validation. There's no cure, so it is to help understand yourself and have 'permission' to change things.
It can help when others don't take it seriously to have a confirmation. It also helps (a bit) with imposter syndrome.
I got it because I was in burnout, had dysfunctional thinking and was an emotional mess, so had to know for sure what was going on, not least because I wanted to understand what had happened in the past.
There was in the blog last week on embrace autism. It's a reasonable summary.
Hi and welcome to the community.
The GP I had when I did the AQ50 (and scored 42) advised that if I did get a formal diagnosis I wouldn't get any support. A lot of people in this community have reported getting a diagnosis and then no support after. So if you feel you need it just for validation, go ahead - that certainly helps some.
I couldn't be bothered with the waiting and stress of having an assessment myself so I've stayed self discovered. If you choose this option you will still be welcome here.
