To diagnose or not to diagnose, that is the question!

Hi and welcome to the community. I'm not formally diagnosed, I'm self discovered and identify as autistic. I realised that I was probably on the spectrum around 9 years ago, but the doctor I saw at the time advised that if I got a diagnosis I wouldn't get any support, so I haven't pursued it. However I've been a member of this community since then and it has helped me, as it's good to have others to chat online with that have gone through similar situations and think in the same or a similar way.

It's your choice, but whatever you choose you're welcome here.

There is that. Not knowimg is irritating.

Last November I made a request to ask for my medical notes. I know the child psychiatrist I was sent to did write about me because many, years later I caught sight of them during a visit to my GP. It was quite the revelation. Unfortunately the notes were written in the 60's and my troubles were seen as related to craziness, not neurology. Bit it would be useful to know if there is anything like PDD Nos mentioned, let's say.

But I have been abroad continuously since 1999, so I may never get to the bottom of it now. 

As one doctor told me recently "If you have to ask, there's something to diagnose. It's just a case of whether or not you think it would help you to have that diagnosis."

In your case, it sounds like it would help. It's a slog but worth it if it would give you peace of mind and tools to move forward. I'm pursuing diagnosis now in my 30s after 4 assessors in my childhood separately declaring me not autistic enough to be diagnosed (in one case, a direct quote). For me, it's worth it because I like answers and not knowing for certain is irritating.

Thsnk you profdanger

I know New Zealand, Australia, and Canada have done it. Now granted, they probably only turn away people that are high-support Autistic, but still having the diagnosis could be a risk.

By way of answering… I spoke with my GP who advised me I could seek a diagnosis via the NHS with a two year wait. Or use Right to Choose. I opted for the latter. You are provided with a list of private specialists who offer treatment. Then the GP makes the referral. The NHS pays. 

Long story short, I am now officially a member of the club. 

You don't happen to know wbich countries enforce this would you? 

HI maiz450 

So I asked ai to summate the thread for me first and it came up with this:

"The National Autistic Society community forum thread examines the complexities of pursuing an adult autism diagnosis, weighing benefits like validation and workplace support against challenges such as long waiting times and limited post-diagnostic resources. While a formal diagnosis aids in accessing specific healthcare and employment accommodations, many members also emphasize the validity of self-identification and community acceptance."

I'm gonna take a different tack tho' and build off your title quote because it has been thro' my mind a lot.. (literally quoting it in my internal speech). 

TW I spent a long time in suicidal ideation before kindoff emerging as a different person in context of autism diagnosis/burnout etc.

AI says this when i asked it to explore the famous "to be or not to be" speech for me

It could also be asked if those people are happy now, a diagnosis is what you make of it, it can empower you or hamper you.

Hi and welcome to the community.

You might find the information here helpful - it includes some insights from other autistics:

NAS - Deciding whether to seek an autism assessment

And also, perhaps:

NAS - How to request an autism assessment

But there are also some autistic people who are not happy at all, that there are more and more people getting this diagnosis. Anyway I always remind myself: stop pleasing other people,  at my codt. there will always be someone unhappy. So the main reason for getting or not getting diagnosis should be: do you want it, do you need it?

Indeed. Well said. Thank you for helping me look at this from a different perspective. 

I'd say it is yes, if for nothing else than to get the true numbers of autistic people there are, then maybe we won't be labled as weird and odd. I think this effects not just those of us who are autistic, but for wider society too, maybe NT's aren't so "normal or typical" after all?

Thank you so much.

this has made me feel so much better about pursuing a diagnosis! I believe I can get a free screening consultation to see if it’s worth me pursuing a diagnosis which is also quite reassuring. 

I suppose it’s not the end of the world if it was negative! 

thanks again. This has helped so much 

maiz450 said:

did you worry about the results coming back as non autistic before diagnosis? 

Oh yes, I did worry about that! However, I’ve heard on this forum that chances are if you think you’re Autistic, then you’re likely to be diagnosed as such. I was even more worried when my daughter was being assessed because I (incorrectly) thought that if it came back negative then that means I’m just a bad parent.

One thing I like to make clear though is that if you get a negative you’ve got two options: You can pursue a second opinion or you can self-identify. There are several regular members on this site that self-identify, or in other words they don’t have a formal diagnosis but they still identify as being Autistic. That’s totally fine. It might not get you some of the positives that I listed earlier, but a self-diagnosis at least gives you access to Autistic communities such as this one.

So it’s not all doom and gloom if you get a negative.

Hi Cinnabar_wing! 

Indeed, it’s nice to know that awareness of autism in females is beginning to develop allowing so many people to understand who they are! 

I agree with you about profdanger it was very helpful. I also agree with them about ‘imposter syndrome’ I think id rather know than not know! 

Thank you for your reply and kind words! 

Good evening from England! 

thank you for your reply.

not planning on emigrating ever so that should be safe! It’s more for my peace of mind and for my family to understand why I am the way I am. 

did you worry about the results coming back as non autistic before diagnosis? 

considering these points you have provided me (I love a list!) there appears to be a lot more positives than negatives, which leads me towards at least trying for a diagnosis.

thank you so much for your reply and advice. 

maiz450 said:

The lady said to me ‘it’s not possible it’s mainly in males’

Hi maiz450! This bit says it all really, it's really very outdated to say autism is a male thing, so if this is holding you back from bringing it up with your GP, then I think it would be worth it.

ProfDanger has some really excellent points on why you might or might not consider it, I had no idea of the last one before being diagnosed, though I don't think it's an issue for me.

Good luck with whatever you decide, but you are still welcome here if you self identify, you don't need a diagnosis to use the forum!

Hey good morning from America, maiz450!

So my diagnosis journey was somewhat focused on proving to family members that I am, in fact, Autistic. I didn’t really have much else in terms of a goal with it. It worked, though.

However, there are other reasons to pursue one:
1. It is incredibly hard to get accommodations at work, but a formal diagnosis makes it a possibility.
2. While there are no cures or medication for Autism, it can inform doctors of what treatments may or may not work. Ex. I used my diagnosis to explain to a sleep doctor why a CPAP machine was not going to work for me.
3. You can possibly do this without a diagnosis, but it makes it a little easier to get a therapist with a background in Autism.
4. It can help, but not cure, imposter syndrome. It’s less likely you will question whether you have it.
5. It’s rare, but I have heard one person on this forum state that there are support groups that only let people with a formal diagnosis in. That’s a little wrong in my opinion, but it’s apparently a thing.

On the other hand, there is at least one good reason why you shouldn’t:
1. If you’re planning on emigrating, some countries do not allow people with an Autism diagnosis to immigrate into their nation.