Scared of going for a diagnosis

I don't think anything is needed to be done. It's sort of validating, try and see the benefits of your (now) understanding 

I found it upsetting at first. I suspected I was autistic now I know I am... it feels very different that I don't know how to process it.

Hey, and how are you feeling as it's sinking in ??

I found my diagnosis very positive (mid 40's, male), and personally I try to very much embrace my differences from others, instead of worrying that I'm different!

I applied for my assessment quite late, I'm in my mid 60's now. The doctor asked why, I said I wanted confirmation, rather than just suspecting I'm autistic.

I, too, don't remember much of my early childhood, Anything before the age of 11 is a jumble. I had one or two strong memories, but couldn't tell you where or when they were.

As I got older, I did feel lonely a lot, plus felt like an outsider all the time. The idea of being autistic back then didn't exist, it's only recent decade or so I've started to suspect.

My assessment got input from my partner but they only know me from the last twenty years, nothing from my family as such.

I've felt like an impostor in most of what I do, so when I was told, "Yes, you are autistic", it was a bit weird. It's one thing to suspect, but to actually be told was very emotional.

(I'm a man, for context)

Hi Alice,

I completely relate to this. I felt exactly the same before my assessment, and I think a lot of autistic people do.

For me, it almost felt like imposter syndrome. All the voices of people who had doubted me over the years came flooding back, people saying I was overthinking, being dramatic, "too intelligent to be autistic," or that it was all in my head. It made me question whether I was somehow making it all up.

But here's what I came to realise: autism is real, and it's incredibly diverse. There isn't one "correct" way to be autistic. Your presentation won't look exactly like someone else's, especially as a woman who's spent years masking. That's one of the reasons so many women are diagnosed later in life.

I also worried about not remembering much of my childhood and not having people who could speak about what I was like growing up. I thought that would mean I couldn't be diagnosed. In reality, the clinicians are experienced in assessing adults, and they understand that not everyone has perfect childhood memories or family members who can contribute.

I was recently diagnosed, and honestly it has brought me a huge sense of understanding. It didn't change who I was, it simply gave me an explanation for things I'd struggled with my whole life. Now, if someone comments on a behaviour, the way I communicate, or a body language difference, I don't feel ashamed anymore. I can simply say, "That's part of my autism," and if they're curious, I can help them understand. More often than not, people realise they were making assumptions.

A diagnosis isn't about proving yourself or becoming "more autistic." It's about understanding yourself better and giving yourself permission to stop blaming yourself for things that have always been genuinely difficult. Whether you decide to pursue one now or later, your experiences are still valid.

You're definitely not alone in feeling this way, and I hope being here helps you realise there are so many of us who have had the same fears before diagnosis. Wishing you all the best on your journey. 

For me it is similar. 

Some of us won't just fully trust the result, since they can not be always entirely accurate.

Hence, personally, I took the result simply as an extra piece of evidence, and kept working on my struggles in the same way. This thought helped to ease some anxiety during the wait as well.

I don't remember much of my childhood. They had some opinion of my mom only. So they worked with more of my timeline from teenage years onwards.

(I should add, I am a man, just for context.)

Hi Alice! I was in a similar situation a few months ago and am now formally diagnosed. I can definitely understand the imposter syndrome feeling, just know if you are relating to the symptoms of autism and are struggling it is always worth getting referred. The process (for me personally) was very smooth, come ready with preparation on how you think you fit the criteria and just be open and honest. The clinicians were all very helpful and kind, and no one is here to judge. I think that getting a diagnosis can help you understand yourself better and get adjustments in daily life to help you! Best of luck in whatever you choose to do

Hi Alice, ask yourself why do I need a formal diagnosis, for what reason.  Mine was simple, I was homeless and needed it to help support a housing application, its also helped with employment and I've found it has helped me understand the highs and lows of my past.  Like many on the ASD we can overthink and make it harder to deal with everything and anything.  Maybe just tell yourself 3 reasons why you want it and 3 reasons how its going to help. 

PS I had no childhood or parental input either, just 3 interviews via an online video conference with a psychologist.  yes I did get agitated, I did ramble, I did get confused, and I found it frightening, but like a marriage certificate its just a piece of paper, what it means to you is more important with or without it - self diagnosis is not any worse or better. 

I wish you all the best on the journey that is self discovery what ever that may entail. 

also see if you can get the books through your library or on free online apps, otherwise it can be very expensive to look things up and do research as i found to my cost.................financial and otherwise. 

Hi Alice, 

I felt exactly the same way and felt like I was going to be told off for making it all up but the truth is your gut is probably right! Mine was. The assessment was actually very validating and is a lot to process but if you want to explore the potential of being autistic, you should go for it!

Hi Alice!

I'm in the same boat as you! My first appointment was yesterday, & my next one's in june (the 1st) I was nervous because of previous experiences with the learning disability team, but the 1st one wdnt wrll yesterday, I'm just waiting for the next one

All the best!

Billy :) 

I'm very much impaired internally, externally I function well in everyday life- I don't need assistance in household, basic tasks etc. I have no issue managing my money (currently,  in the past I had) but I struggle doing things that are outside of my daily routine. For example buying clothes for myself and my daughter. Someone has to remind me and help me organise time for that. Someone has to inform me, that I have a hole somewhere or that I need new shoes. Otherwise I live in my own world and it doesn't even come to my mind to think about it. This problem solves my mom, who gives me quite much clothes for me and my daughter. These are usually second hand, but good quality. She asked me few times if I'm not offended for getting second hand clothes. I'm absolutely not, I don't care if it's new or not. I aldo don't care what is the logo, label etc. I'm happy when it lasts more than few washings. My husband controls my pacing (repetitive behaviours,  that used to impact severely my daily functioning in the past) my grandma looked after me, made sure that I shower and used to explain to me that I have to shower and why. I was a teenager at that time. So I used to be quite strongly impaired in my past, with support from some of my family members (although they are also toxic) I appear to be just a bit quirky. I also figured out many things on my own - for example managing meltdowns. 

Sometimes when I look back at myself in the past, I wonder how I managed it, to change so much and manage myself. I used to hear that im not suitable to function in this world. It hurt, it was true but I needed help with it. Nobody recognised that on time, they thought I was just stupid and problematic. My husband supports me a lot, although he does not really understand my struggles. He also does one more thing- talking to people,  on tge phone or live. For me it's terrible,  he does it very well with small talk etc. This way he gets things done.

I really enjoyed reading your thoughts on this, I think it's very relevant to what a lot of people worry about when going for a diagnosis and whether they'll 'count' or not!

Yes, because it's not only confirmation of the condition you have, but also description of your unique only yours experience (full report) written by a professional and it may help to find strategies to cope better. 

For me, getting a diagnosis was important, as I can learn more about the way I am and, crucially, explain that to others.

I would say that you're always going to wonder, as that probably won't go away 

I get the impression that you can live independently without support, however, for me the diagnosis was not about seeking support, it was about understanding (me, and those around me)

I already posted a reply here, but have some more thoughts. 

I researched today a phrase "where is the boundary between Broader Autism Phenotype and ASD. So first there was the information,  that in ASD the autistic traits cause an impairment in daily life. In BAP- not. But it's all not that 0-1, black and white, unfortunately. I like having everything clear and 0-1. But the whole spectrum is not that clear. It was even written, that the difference is often blurry. One person may be considered ASD (meeting the criteria) in certain environments (more demanding) and then if thus person gets support, they function better, then they may not be considered Autistic anymore. Which I find ridiculous,  because everything in life changes, but autism is (as professionals say) a life long condition. So for this reason I decided,  that even if I hear from my assessor, that I currently don't meet the criteria, I would still stay here, because I found my place here. For me a negative diagnosis would mean, that 1) the subjective opinion of this professional is that im not autistic enough; 2) there is probably no support for me out there anyway.

If in any circumstances I lose my closest family members,  then I would need an external help. Then I would suddenly fit the criteria. But taking the uncertainty and long waiting times, it could be crucial for me to have the diagnosis as soon as possible,  but it could be impossible. 

So all this is confusing for me, there are too many voices, opinions,  one assessor would give this dx, another one- not. The only thing I'm currently sure is that I have quite strong autistic traits, that are present since ever. I'm for sure BAP somewhere close to the ASD. Or ASD. I also found out, that many people considered "BAP" also struggle with anxiety and depression as a result of their autistic traits. 

I to had school reports, and they helped throw a light on things. Although some things you wonder why not picked up or taken further. In my case, maybe moving hence attending several different schools in different areas didnt help as I was always the new kid in my younger years and other kids had already bonded and formed friendships etc.

Wow sounds like it was very painful for you. I don't have reports, but I do have memories and things my parents have told me which are indicators. I hope this will be enough and definitely want to go through process now.

Thanks and I'm of very similar age and situation to you. It gives me a little bit of peace of mind that it will be ok to go ahead based on where I am

My parents were both deceased but had kept every school report plus health records from my early baby months. So the nhs assesor accepted these in lieu of a parent. The early months documents included references to limb issues and eating problems which she saw as relevant. The school reports contained many critical comments by teachers about my behaviour, attitudes, and sporting + academic failures. These hurt terribly at the time as my parents judged me as deliberately difficult and not trying hard enough. However these very reports which were traumatising to me as a child were highly valuable in securing the diagnosis