Conflicted on whether to go through the process of getting a diagnosis or not

So, I would say you aren't alone in thinking all this stuff.

For myself, I literally hit a burnout so bad it felt like crashing into a steel wall. It's taking time to recover and rebuild and part of that was trying to sort through the ways in which Autism affects me. Everyone around my had at some point or other suggested I might be autistic and for the most part I ignored it because 'it didn't matter' and 'what would it change'. 

I only had the assessment on 31st of December so it's all new to me, but as I've sorted through things - knowing one way or the other has changed some things.

My reason was that my brain does get in my way a lot of the time. I needed to know if there was a reason that the way I approached the world was so wildly different to other people. I had to wait a little over two years to get that answer, but slowly I'm beginning to figure out things.

I would suggest though, if all the indicitive tests suggest you might be autistic - get the referral for an assessment. Take the AQ10 into the GP and speak to them. You lose nothing by undergoing this stuff. If you have an experience like me you might cycle through a lot of periods where you strongly think you are, but then hear a single word from someone else and for months deny that you might be autistic. Truth is that the only way to know for sure is to go through the assessment/diagnosis process. 

Knowing for sure, where its only been a suggestion is a mixed bag for me right now. What I will say is that while I don't 'feel' any different - I have some explainations for the way the world works, and my reactions to it. 

Though, you are you. What works or worked for me, might not work for you. I hope whatever you decide it helps you out though.

Just wanted to reply to say another person here in a very similar situation. I really like the replies given below. All I can add is that you don't need to make a decision today, this week, this month or even this year. Take time to think about it and look after yourself as the main priority.

I'd encourage to get it checked out! You would get an answer to your constant 'what if I am', they do ask alot of questions and are very thorough, more so then online ones. After having my son, watching him and thinking of my own experiences and behaviours, it finally prompted me to go for it. I ended up being fast-tracked through. It doesn't change alot and I'm still the same person but it explained alot of my suspicions and now I feel I can be better prepared to support and understand him through understanding myself.

Best of luck to you

Thank you so much for your thoughts and comments, everyone.

it’s helped me a lot. I’m still thinking about it, but I’m leaning in the direction of just going for it.

Thank you all again.

Hi

I was not sure about having a formal diagnosis but decided eventually to go for it. The main reason for me was that my youngest boy received his diagnosis and I want to show him he’s not alone and that he has a future (something he worries about a lot).

I am now on the waiting list but massively nervous about it all.

I like you said thought about this for so long, some days I wanted to go ahead and some days I convinced myself I was doing the wrong thing. I think eventually you will come to a point where you will want to or you won’t, I guess it’s about asking yourself enough times and making sure.

Maybe you could write a list of why you think it may benefit you and why you think it might not. 

Good luck 

I ended up doing what Pixiefox said, not seeking a label but figured out what my identity was finally. The acceptance of that in my own mind made me happy enough. It did take me a long time to come to that decision though, it wasn't overnight. It really helped talking to people here though - one person's statement in particular helped me settle it, they said something like "after an assessment/diagnosis or not, you'll still be the same person as you were before".

I was only diagnosed a few weeks ago but had an employment grievance earlier in the year. I had told them that autism was suspected and that I was on the waiting list for assessment but obviously, whether you have a diagnosis or not, your HR need to have a record. If you don't tell them, they don't know.

I was offered a payout that my solicitor said wouldn't be any higher if I had official diagnosis 

The law does state that a formal diagnosis is not needed to receive adjustments. However having a diagnosis makes it much harder for employers to claim they either didn't know or don't believe you. Also makes it easier to show you meet the requirements of being disabled under the equality act

Mr T said:

In the uk having a formal diagnosis is probably best if you want to ask for accommodations in employment.

Just as an aside on this subject, I have heard others on this forum say a diagnosis is not needed and just claiming you have autism is enough.

Does anyone know what the law actually says about this?

I would normally look this up myself but got limited internet access at the moment.

In the uk having a formal diagnosis is probably best if you want to ask for accommodations in employment. This is because it is much easier to confirm to a court that you are autistic in any case of discrimination.

The law states you do not need to have a formal diagnosis to receive reasonable adjustments but if you have to go to a tribunal having a formal diagnosis make it easyier to prove you are disabled.

Hi and welcome to the forum. Are you in the US? (Just because you wrote "mom" rather than the English "mum")

It's going to be your decision, but read through posts on here to gain more knowledge about it.

I'm self diagnosed, or self discovered as some of us now call it. I wouldn't get any help if I had a formal diagnosis and I don't need a label, I know what I am. But some people get reassurance from being formally diagnosed. We're all different.

If you haven't yet seen it, you might like to read this resource:

NAS - Deciding whether to seek an autism assessment

Thank you for all the replies.

I really value everyone’s input.

Well firstly I think that it is good that you are doing this and that you are also thinking about such a lot about yourself – it is not easy to be able to put all of this into words like this so well done.

You have actually described and analyzed yourself, which seems like personal research to me, which is quite a good start. Of course, one must remember that getting diagnosed is not about proving anything to anyone; it’s about learning more about oneself and if one needs some help, then one is more likely to get it.

So, yes, it is okay to be a little confused, or a lot, as the case might be. Perhaps ponder on what a diagnosis would entail for you. Would it bring clarity? Assist you in making yourself understand by others? Make you feel more validated? If it would bring you some level of comfort because you feel that is what is needed or help you grow in some way then go for it.

Hi, I struggled with this debate for quite a while too. I did decide to go via the route of getting tested, and frankly I did find it a bit discouraging. My dad was super helpful and open to the idea of me being autistic, whilst my mother was rather certain I wasn't. My GP was absolutely awful - she told me that it "wasn't worth going through the years-long process to get a piece of paper" and at one point outright refused to refer me to Clinical Partners via Right To Choose - I instead spoke to the receptionist there who was super helpful and if it wasn't for here I wouldn't have managed to go through the process.

However, it was these obstacles that made me want to go through the process even more. My advice is to follow your instinct and try to get an answer for the question - it is a nice thing to know and can help explain some things. Even if you go through the process and you find you don't have autism, it's a lesson learned.

Finally, I would add that getting a formal diagnosis is helpful if you decide you want to request workplace accommodations or if you want to fight a case for discrimination in the workplace, or whatever else. Don't let autism define you, and don't let it become a crux you rely on for arguments you may have with colleagues and the like, but even just informing colleagues that you have autism can help foster understanding and break down prejudices.

I've only recently received my diagnosis. I was on the waiting list in Tayside for almost 2 years and that was the fast track list. During that time, there were days that I was sure of my autism and days I rejected the idea. It was a bit confusing and as the assessment came closer, I did feel a lot of anxiety about it.

Since receiving the diagnosis, I know. There's no doubting it. I don't know what it would feel like to be diagnosed as not autistic but I still know that I would know.

One thing that convinced me to go for it was the reaction from friends and family when I said I suspected it. I didn't have anybody tell me "but you don't look or act autistic" there was a sort of silence that I could only take as "yeah, we could have told you that years ago"

Self diagnosis is valid but unfortunately, you can change your own opinion too easily. If that's what you find, I think official diagnosis is the way to go.

Good luck with whatever you choose to do 

purpledot said:

However, I felt relieved just to figure out that it might be autism. I didn’t feel the need to get an official diagnosis until recently. But when I consulted my mom about it, she said I can if I want to but that she’s sure I’m not autistic

My teachers in primary school told my mom they suspect me autistic, she denied that saying that I’m normal just like her. I’m not exactly like her, but yes there are some similarities. Maybe it’s similar in your situation or maybe your mom is just used to with you and maybe your “quirks” and your issues or behaviors are nothing unusual for her. Maybe it’s also a thing that she may have a stereotype of an autistic child s and you may not fit her stereotype. When I brought this topic up with my mom sone time ago, she said it’s crazy and I have nothing in common with autism and then she gave me a rant about what autism really is. She herself did not realized that lots of those traits she mentioned are also my traits and I was told by her many times stop being so… (for example literal) etc. I just listened and smiled saying nothing (we spoke on the phone). I think maybe you can try to either educate your mom a bit, explain to her why you think you might be autistic, but it may not work at all if she is not open to new information. Then maybe you can choose to discus this matter with people who understand it better and support you with this. This of course does not mean cutting contact with your mom. I talk to my mom everyday and I love her but I just chose to keep her away from this matter. I also think that if you feel you need to find it out for sure - it’s worth to look into it. Here on the site are articles, there is also pros and cons of seeking the diagnosis. I think it’s nothing shameful doesn’t matter if you get diagnosed or not. 

Unless you are assessed you'll never know for sure. If you are in the UK and assessment is done through the NHS but the waiting list is very very long, you also have the "right to choose " option where it's done privately through the NHS. You can go privately but it'll cost do go through that process.

Personally I'd rather know than not.

Obviously your first step will be your family doctor to get the ball rolling.