Hello. Recently a friend suggested I might be autistic so I did the tests (all of them) on embrase-autism.com and passed them all with flying colours! After discussing this with those closest to me they all believe that I am autistic and can now see why I have found so many 'normal' things so challenging throughout my life.
Here is a bit of by background. 2 years ago I had to retire from my career (I was a maths teacher and deputy head of a school) as I had suffered for years with extreme fatigue, chronic pain, brain fog etc., to the point of becoming housebound. In the end I was diagnosed with ME/CFS. Since not working I have made some progress but no longer have the resilience for a normal day let alone work. It took nearly 20 years to get any support and help from the doctors before being diagnosed with ME/CFS. It was a very stressful and exhausting journey.
I wrote to my doctor requesting a referral and he responded that I won't get a diagnosis in Lincolnshire at 52 and gave me Lincolnshire talking therapies helpline! Since his letter I think I have decided not to chase this up as I don't want to be completely stressed out waiting to be referred and going through the assessments (all of this would cost me a huge amount of energy that I just don't have)
So my question is this - should I try to get formally diagnosed and what are the benefits of doing so? At the moment I don't particularly feel the need to inform or prove to anyone that I am likely to be autistic (those that know me would not be surprised) but want to be sure I am doing the right thing.
Many thanks
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TheManOnTheBike
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I made the decision to get formally diagnosed when I went to university, as it had been suggested by psychiatrists beforehand that this was a possibility, and I thought if I was going through a new challenging environment it would be good to have the diagnosis in writing so that I could access support if I needed it.
Some people also look for a diagnosis for confirmation; that doctors have officially said "Yes, we agree with what you suspect", so you don't have to be repeatedly told by others "You're just sensitive" or "it's just shyness".
I think it can sometimes be mistaken for a fix, that the diagnosis will provide answers and solutions there and then, when actually of course, though it can provide answers and give confirmation and clarity, it doesn't mean the autism-ness we face day to day will change straight away.
What I've found helpful is that when you know you have it, or think you're likely to have it, you can look for ways of helping you manage the day to day challenges, (and this can be with or without a diagnosis).
Bearing in mind everyone is different, in the same way every human being brain's are all a bit different, so are everyone's experiences with ASD. In the same way the ways that you find to help you manage living in the world will be what ever you find work best for you (though naturally, these should be things that are healthy and safe!).
So for example, I know I have ASD, it's well masked most of the time because i've got good at acting fairly normal in public situations. (Also snap, i'm a teacher too,which is like a performance art at times). I know that when i'm starting to feel overwhelmed I need to find a quiet place and some time dedicated to let myself feel calm. I can also find peace being with my animals and doing the things i'm interested in. It lets me refocus. I can also prepare myself if I know i'm going into a potentially stressful situation, e.g., travelling to London by making sure I have planned everything very thoroughly along with contingency options, plus things to help me feel calm like an audiobook to listen to.
These are coping strategies and ways of working that I have come to realise work well for me and how I respond to the world around me. And I think anyone can put these strategies in place to help them, with or without diagnosis.
(sorry for the slight tangent) Overall, I think the benefits of getting diagnosed can be that it can open doors to specialist support (though this is also somewhat dependent on what's available in your area though there are also lots of communities online as well), it also means it's on your medical record which is always good to have. It also means it can be taken into account at any workplace you go to and if you have a good manager / work set up they should be able to accommodate this, as you would be a "disabled" individual. (Though I prefer "differently-abled").
The less great sides are that it can be a long process. I took me about a year to go through the whole process if not a little longer and this was pre-covid. There may be waiting lists. You also have to sometimes work hard to make sure your voice is heard and that they're getting all the key facts.
But overall, it is entirely what you feel is best. It will mean an official term to how you experience the world, but it will also still be you and your experience. I hope this can help a bit.
Thank you for such a full answer. Your response is definitely helping me to think remaining as officially ‘undiagnosed’ is best for me. Being retired (albeit not by choice) means a diagnosis is only a confirmation and not much more for my situation. I’m really not keen on adding any additional stress to my life so thank you for your advice and support. Really appreciated and it’s a huge relief to be able to talk directly with people that truly understand.
There's absolutely no "need" to get an autism diagnosis unless you feel that the piece of paper would give you some sort of closure or if there were some tangible benefits which could flow from it. As regards the latter, I can't see from what you've said that this would be the case for you. If you were a student looking for "reasonable accommodations" on the other hand, my answer would be different. Rather than going through the incredibly energy-draining process of seeking a formal diagnosis, you might instead decide to meet some like-minded supportive people and learn more about autism through social media such as Mastodon or X (Twitter) or reading books.
Hi Schilddruse, I appreciate your confirmation on how energy-draining getting a diagnosis would be. Between you and NotJim you have confirmed that I should accept my self-diagnosis and learn to help myself in a better way. Much appreciated.
unless your aiming at getting support or help I would not bother, a lot of people are quite happy with leaving it with self diagnosed by using the different questionnaires and conversion between family/friends.
My referral for assessment went in in November. My husband contacted them the other week to query if the referral was even accepted as I didn't want to call, I do not like using phones. He was advised that the referral was accepted but could not comment on how long the wait will be. I have heard about people waiting over a year.....
I think your making good decision to let it be for now, gives you time to properly think about it and process what it means to be autistic to you .
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