Scared of going for a diagnosis

The issue that i had about my childhood was that i was brought up in foster care, so my mum didnt know all of the information. Also she has learning difficulties so would not be able to remember. I honestly thought that this would impact my assessment.

I love this Rayyah. It's exactly how I feel about it all

This could be me writing this Alan!! My experience was almost identical (bar having my old nanny as the informant for the assessment, regarding me as a child)

Hi Alice,

I just wanted to say that I recognised so much of what you’ve written. Although I’m a man rather than a woman, I had many of the same fears before my assessment.

I spent a long time worrying that I wasn’t “autistic enough” and that I’d somehow be putting it on without meaning to. Looking back now, I think those thoughts came from years of masking and questioning myself. I was so used to trying to fit in that I wasn’t sure what was genuinely me anymore.

I also worried about my childhood because I couldn’t remember much and there were gaps in the information available. My assessment didn’t rely on me remembering every detail. The clinicians were interested in my whole life, how I experience the world now, and any examples I could provide. They understood that memories aren’t always clear.

One thing I found was that I didn’t need to perform or prove anything. I just answered honestly, even when I thought my answers sounded silly or didn’t seem “autistic enough.” Ironically, the things I thought were completely normal turned out to be the things that reflected my autism the most.

Getting my diagnosis was a huge relief because it finally explained why I’d struggled with things that other people seemed to find easy. It didn’t change who I was, but it helped me understand myself with a lot more compassion.

I know it’s incredibly daunting, but you’re definitely not alone in feeling like this. From what you’ve written, it sounds like you’ve put a lot of thought into understanding yourself, and I hope you find the answers you’re looking for. Whatever the outcome, you deserve to be listened to and taken seriously.

Wishing you all the best with whatever you decide to do.

Alan 

Hello Alice, 

A man here, age early 70s. I have just recieved my Autism diagnosis.  
I had many of the same feelings you mention. I prevaricated for quite a time going through the "will I be able to illustrate my autism".  I needn't have worried, as the two specialists were very experienced. The assessments are standard and designed to obtain the data required but are not like an exam. I found it a most remarkable and memorable experience. Probably the first time anyone has taken me so seriously. 

I, too, was worried about being able to provide the answers required.  But it isn't like a school spelling test i.e. right or wrong. So, just a poor made poor example of how a professional might ellicit the information they require:

Question: Have you ever flown in a plane?
Answer: No, I would hate that. 
Question: Why would you hate it?
Answer: Well, it would make me very anxious.
Question: Do you get anxious a lot? 
Answer: Oh, yes all the time!
Question: Can you give me an example?
Answer: Oh, this will sound so stupid but I really get stressed using a public loo or even one is somebody else's house.
Question: Did you get anxious when you were little?
Answer: School was so strange and all those people, and names, and rooms, and corridors, and loos. I felt so lost.

This actually mirrors my own experience of starting school and I never ever got used to it.

Best wishes with whatever decision you make. 

Oscar 

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)