Hi ! Is being diagnosis worth it as an adult?

for the first couple years post diag, it was shitville. i joined a couple aspie groups - gave up with them.  but eventually i got a psychologist who agreed to see me twice a week, and slowly and painfully, things have improved. things still are awful, but it helps so much to i guess figure out you really are different, and not just a fkup... or whiner... i now no what to avoid (noises, crowdes, too much stimulation, and also avoid disorganization!)... 

i guess the diag is definitely worthwhile, for the reasons people say here... i was 62 when i was diag';d. i found out that almost eveyrone i no probably is aspie, aspie-like, or just has some EF and other challenges. it's kind of eye opening. but --- my life still reeks... basically, i was one of those aspies in plain sight, just hiding it, from everyone. awful. it helps to be able to look back at the past 60 years, and see how all those pieces just fit... well, helps is the wrong word --- it makes sense now.

good luck....

PersonAnon said:

It's like walking across Dartmoor for your whole life, making it up as you go along, and somebody suddenly hands you an ordnance survey map, a compass, a smartphone to pick up weather forecasts.

This. Beautifully put. A fantastic way of describing what it was like for me when I was diagnosed. (I would add though, to riff on PersonAnon's comparison, that it does take time how to learn what to do with the ordnance survey map, a compass, a smartphone.)

I'm 64 and the diagnosis last year came as a huge shock and a real surprise (quite a successful career, financially secure, married 30+ years, but struggle with relationships generally).

Having got the diagnosis, I studied the hell out of Autism, not with popular books but peer refereed academic papers, original research, and academic books for counsellors and other professionals.

So many cogs dropped into place, explanations for things that had happened in the past.  I am - absolutely definitely - navigating the world with less stress and conflict, and with greater predictability, because I can stand outside my 'autism head' and understand that something which is common sense to me, may not be for everyone else.  I can even predict when that will happen, quite often.

I’ve learned that to achieve a particular outcome in discussion, the ‘input’ you give has to be completely different.

In a typically autistic way, I have spread sheets, lists etc of scenarios to watch out for, behaviours (both my own behaviour and NT behaviour) to be aware of etc.  I don’t refer to them, but creating them helped to order my thoughts and generate different strategies for interpersonal communication.  I don’t always get it right, but if I get it wrong I usually know why, fairly quickly.

Knowing myself better has helped me to know others. 

It's like walking across Dartmoor for your whole life, making it up as you go along, and somebody suddenly hands you an ordnance survey map, a compass, a smartphone to pick up weather forecasts.

Different world.

It's an interesting journey. 

I had mine done a couple of years back just before the pandemic.  I literally got my diagnosis a month before we went into lockdown.  Through the next few months I really struggled and all evidence points towards my life being a complete failure and general fkup, which is mostly down to my autism.  I then spent some months considering ending it.  Then I decided not to, but thought I should just embrace being bloody-minded and selfish and generally myself.  I went to college and did a course I was interested in doing and maybe getting a job in.  I haven't finished it yet.  Health problems have complicated things.  That brings me to here.

If you go into it expecting a miracle you will be disappointed.  it doesn't change anything besides offering you a little more help throughout your life.  Your employer can no longer bully you and has to make your work life more suited to your condition.  If you are unable to work, you can probably get PIP and ESA.  I don't think blue badge or motability is possible, though.

I don't actively hide my diagnosis, but not many people outside my family know of it.  The people I tend to hang with are also ND.  As an ND I seem to always find people who are also ND and I can talk to them easily as we are all on a similar wavelength.

Saying that I was supposed to be on a waiting list for an understanding autism course run by my local NHS Autism hub, which I have apparently been removed from.  I was looking forward to going to it and meeting other people.

My advice is do it.  It's an interesting journey of self discovery.  But it's not like getting a degree.

it didnt make a difference to me apart from when i went to get help for my mental health they just blamed the Autism which is a F'KING joke and has led me to develop more mental health issues, not idea what this world has become

No problem, and really interesting to read your own sense of sometimes connecting only obliquely with a conversation and ending up in tangents without seeing them as such. I have that to some degree, but some days are worse/better than others. The stress and anxiety I totally get. It’s a near constant - the best way I can sum it up for me is that I can invest three times as much mental energy, thought, care, and internalised emotion into getting something wrong as most will put into getting it right. It’s a constant drain in the batteries, as is the introversion that naturally goes with the territory.

Yes, like other have said in the thread already, I also had to go via my GP to get a referral to the NHS for assessment. However, the resulting waiting list was four years so I chose to pay for an assessment  and it wasn’t cheap! But worth it. And now the information goes back to my GP for the record. I’m still working out who to tell and why. But even if I told no one it is already helping me to see that the way I’ve arranged my life needs no apology. It’s scaffolding, not stagnancy, and healthy in a way it might not be for someone else. Knowing that is so helpful and consoling. I know who I am, what I am, and that I’ve navigated life better than I ever thought. Even if the struggle that makes that true can’t be ‘fixed’ as such. And I wouldn’t want it to be, for reasons I find it hard to presently articulate. 

I’m very much the same, only 7 people know that I’m autistic, self diagnosis or a formal assessment is totally up to the individual. I think I will find a final answer a big help. If a diagnosis is needed for financial support or care support then I think an individual should seek a diagnosis.

Hi there. I was diagnosed at 56, only a few months ago.

Whether it's worth going through the process or not is a personal choice. It is stressful and if the NHS won't do it, potentially expensive.

It also depends on whether you are coping as self identified. An ex boy-friend of mine is self-diagnosed (like minds attract, huh?) and he's happy with that. He knows who is and why and can help himself from the ASD menu of self-help techniques, but otherwise sees no benefit to a bit of paper.

We certainly won't mind here if you are formally or self diagnosed, so your decision either way won't preclude you from jumping in and exploring your autistic identity here.

But on the other hand if you are struggling with any aspect of your autism - yep! I would recommend a diagnostic route. Saved my life! It can secure legal protections for you and access to some services (not that there is a lot) and knowing for sure can enable and empower you to own your autistic identity and the solutions to the detriments of living in an NT world.

As to people finding out..  well I'd suggest your GP NEEDS to know. Other than that, it's entirely at your discretion. The only people who will ever know are those YOU choose to tell.

For me, it was totally worth it. Best thing I ever did! And I am loud and proud about it. That too is liberating me in so many ways. Whatever you choose, Good luck :-)

Hi, I’m going through diagnosis at the moment, the first step is to go and see your GP. It is an uncomfortable task but it has to be done. Make an appointment and then make some notes of what affects you. The waiting list is about 2 years for diagnosis so don’t leave it.

The dsm-5 does require some evidence that you are autistic from a developmental age. You did mention that you felt on the spectrum from the age of 18, think about your earlier life and how you felt about making friends or some social occasions. I’m in my 50’s and I know that I started masking in pre school. It is different for everyone, maybe ask a parent about your early years.

To me a diagnosis will bring closure, once you start piecing it all together you then realise that your not odd, your just different.

I restore classic cars, I get very behind with work, I’ve had a customer badgering me for the last couple of weeks. It got to the point of me hiding from him. My anxiety was going through the roof, I hate personal contact, I finally sent him a text and explained that I’m autistic and my work is apparently brilliant but takes me twice as long and every day is a struggle for me.

I got a message back with an apology for pushing me, he then told me that his son is autistic and he knows what the struggle is like. Knowing why you are different does help.

Good luck.

Hey, Shardovan!! Thank you so much for responding! You describing your experiences ... actually feel like they mirror mine! This helps me feel a lot better. I struggle with feeling completely different verses everyone else and I always feel a little off. One huge problem for me is during conversation I believe I'm on topic or answering a question but I'm completely off base!! Not even remotely close to speaking about the topic, just what I assumed was similar enough to talk about!

Your response has convinced me that a diagnosis might calm me. I always feel a bit anxious or, like, I'm not going to understand what's happening around me. I feel a lot of stress with being different considering it's not something I'm trying to be :( 

I think you're right that having professionals affirming (or not, although I probably am) on the spectrum would give me reassurance instead of thinking "Maybe I am XYZ like these random people say.".

I do have one question. I am based in the USA and I've been reading that in order to be diagnosed I must go to a General Practitioner then a Psychiatrist. Is this how it worked for you?

How did you get diagnosed as an adult? :)

Hi Jabberwocky. I've just been diagnosed at the age of 44 and, for me, it's certainly worth it. For many reasons, but essentially I wanted to know that I am 'really different instead of just being odd.' It has kind of relaxed something in me, even as it brings up other complicated feelings and reappraisals of past and present. I know someone who thinks he too is autistic but doesn't feel he needs the official 'stamp' to say so, and I respect that too. I'm just so uncertain of myself at the best of times, and certainly in terms of telling (in due course) family and friends, it personally helps me to have that bit of paper that says 'assessed and confirmed to  meet  the DSM-5 criteria for autism'. So that if wellmeaning people minimise it or say 'nonsense' I can hold firm in my knowledge that professionals with a lot of expertise could see what I've long suspected. I'm still processing the diagnosis, and a lot of thoughts and feelings spin off from it. But 'know thyself' means a lot to me, and there are so many comparisons I can ease down on now (I think) and stop giving myself such a hard time about.Because it flips things a bit: Instead of being an underachiever (a bit of a too-severe self-judgement anyway, we're not all designed to take life at a sprint - neurodivergent or not), I can actually say I've done OK, considering.