What are the benefits of an adult diagnosis

Hi, I'm in a similar situation to you, it took me a year to decide to have an official diagnosis, and I only did this to ensure that I get support when older, as who knows how that will go? I'd suggest that you have direct conversations,, other than online, that's what I did, I called several people with experience in the autistic field and also discussed the issue in a general sense with others. All in all, it helped me reach a conclusion.

PIP is horrible to try and claim. Even with the bit of paper. I have it for my physical disability which is very visible and even then they try to make your points score as low as possible. It doesn't have to cost 2k, mine was a quarter of that with Sara Heath at Autonomy. But as I say even with it PIP is hard to get.

VLD said:

what we thought was depression, is actually meltdown/shutdown

holy crapola, what a revelation!  i need to consider this too because i'm also diagnosed with MDD and PTSD, so i'm taking an anti-depressant.  still, i don't think my PTSD symptoms look like other people's.  maybe a big part of it is meltdowns/shutdowns. 

Somebody said something about a passport thing which could be used in hospitals? Sorry I don't know anything more than that it was mentioned in a post a while back.

i found out from a friend i was autistic at 40 years old, and then was diagnosed at 41.  it has given me the answer to all of my lifelong difficulties.  so many things are making sense now.  before this, i remember seeing a psychologist and asking her, "relationships always go like this for me: 1) he's an a**hole, 2) he's actually not an a**hole, 3) he truly is an a**hole, and 4) oh, he's actually very sweet and caring and is just different.  why is this happening?  i want this to stop.  i've read the personality disorders in the DSM at least 10 times and i don't think i fit any of them, but i know i'm different. what's wrong with me?"  she responded by saying that, "you are a highly sensitive person, and nothing is wrong with you.  in fact, a certain percentage of the population is highly sensitive because it helped us when we were hunter-gatherers.  i suggest you read up on highly sensitive people."  when i looked into it, it helped me understand things about myself, but i knew that wasn't all.  i was still racking my brain trying to figure it out.  once my friend told me, i was like, "ohhhhHHHHhhh. things are making sense now."  but i still wanted the diagnosis to make sure because i still had doubts since i've been misdiagnosed with bipolar before.

once i received the diagnosis, i felt so much relief and pride.  i'm not a horrible person like abusive NTs have been telling me i am to weaken my spirit and take advantage.  i'm autistic, and i'm so happy i am.  now, i can spot the predators more easily because they'll start throwing passive-aggressive remarks or defining me.  "sorry, but i'm already defined and you're not going to abuse me, jerk that likes to hurt people you see as disabled for fun.  'yeah! let's go abuse the autistic kid!' jerk."  i have found my people.  you guys are it.  it's very relieving and has helped me adjust my life to go down my path rather than letting NTs take me down theirs (edit: i initially wrote "there's" lol).  i have reduced my masking a lot, and it's so nice.  masking takes up so much energy, and it raises my anxiety because i can't stim to relieve it.  i went to the ortho today and didn't mask much.  they treated me soooo sooo much better than when i would mask.  i'm assuming it's because they could tell i was hiding something before, so they thought i was a jerk.  not anymore.  i'm autistic af.  seriously, i will forever divide my life as before and after diagnosis.  i highly recommend it.

Just to answer your question, simply, and from my experience. It could be useful if you are a child or a young adult in an educational setting. On a professional level, having a diagnosis may be useful to be able to negotiate adaptations in the workplace (depending on your type of employment or employer) and/or you may find it useful as evidence to support a claim for welfare benefits.  

On a personal level, however, nothing changed for me, I still feel exactly the same as you did before having a diagnosis. You may or may not have an initial superficial interest (and advice and guidance) from the NHS Team that diagnose you—after all that is what they are paid for—but it will quickly evaporate within a few weeks. The bottom line is that no one cares whether you have a diagnosis or not, and if your life circumstances improve, it will have no connection to having or not having a diagnosis.

Hello 86401, I am Number.

I'm not sure that a "formal diagnosis" helps someone in your position, but I do KNOW that accepting and understanding my autism has been MASSIVELY helpful to me.  I still have all the old challenges and problems, but I now deal with them with significantly greater aplomb and a pervasive sense of "calm" that I had never thought possible in my cauldron of a mind.  Being in this place, communicating amongst ourselves has also been massively important to me.  I had no idea that there were people very like me in the most fundamental sense....who tolerate my nonsense, help me learn and, quite importantly, make me feel less alone.

I hope that helps - just my opinion obviously.

I totally get what you are saying, after all this time, I have started to  give myself a break, my husband is extremely patient and understanding since we discussed that their might actually be a medical reason that I find certain situations and environments hostile and incredibly overwhelming, he is the only person I feel at complete and total ease with. I suppose I’m just thinking that I will still find certain aspects of life hard and always will, I totally understand getting an early diagnosis as it helps the child or young adult navigate life, but I’ve found coping mechanisms and strategies the hard way, but I suppose in a way it might bring comfort when im experiencing particular problem, I just don’t want it to be a crutch and for me to use it as an easy way out of forcing myself to confront my fears of everyday life, like going to a new restaurant etc.

I was 70 last week, i've always been very very shy, when i was about 20 i went my doctor, all he did was give me a little book ......... don't be shy. I suppose things are very different now than 50yrs ago. I was talking to my GP now, a few months ago and he asked if i'd like to get diagnosed, but i said, at my age, is it worth it. All they'll do is give me a piece of paper telling me what i already know. I don't think it's worth a 2yr wait on the Nhs, or a 2wk wait, and pay £2k private. But the last few days i've been wondering. I've got a form here to try and claim PIP, i've put a lot on it about being autistic, and the troubles i have mixing / talking. Will the DWP take my word for it, without having that piece of paper ?

Thanks for the brief.  The whole world is clueless and passes the problem on to someone else I think, leaving autistic person to self-advocate when they can barely communicate, I think.  And no body thinks that an autistic person without intellectual impairments needs anything.  Phew!

My ex-husband was a nurse and used to be able to advocate for me like that.  Sadly, no one is going to get it now.

What's changed for me on receiving my diagnosis is that I'm a lot kinder to myself. I've been able to tell myself that it's okay when I can't do things other people find easy, because I'm not a terribly flawed and useless person, I'm just living in a world that's not set up for people like me.

I still can't drive or cook without a meltdown, and I still find the supermarket to be a sensory nightmare, but knowing why has brought so much relief and self-knowledge that it's a little easier to just... not do things, instead of pushing myself to Be More Normal.

Answers. Nothing will change, why would you want it too ? You will still be the unique person you are and that's something to be embraced and accepted . With my diagnosis , it explained so much . I am very happy and comfortable with who I am  

I was unsure as I am retired, until I had to go to A&E. I told the doctor I was autistic but this was dismissed as I had no official diagnosis. As a result, my GP has put z note on my medical records to show that he has put me forward for an official diagnosis. 

Main difference in accepting I am Autistic is that, working with my GP I am slowly coming off my antidepressant. I can now see that, what we thought was depression, is actually meltdown/shutdown and I can treat is accordingly by taking time out when I feel I am running out of energy.

It will give you peace of mind and hopefully some answers to questions you've maybe had for most of your life.

I didn't think my own diagnosis would do much for me, didn't think it would be worth, but actually it is the best thing that ever happened to me and did give me that inner peace and crushed the doubts that had plagued me for 26 years.

If you want to then do go for it. You've got everything to gain from this.

Hi Dawn, personally I haven’t had any help in that department, I’m not yet diagnosed. I was more hoping. My wife was an endoscopy nurse for over ten years in a large hospital. To be honest if I needed treatment, she normally knew people in that unit, it’s a bit like “mates rates,” I could wait in the nurses office not the waiting room, I always got the nice biscuits.

From what she has told me, they would have a referral from a gp, it very rarely mentioned the persons autism, they only have a potted history of the person. The person needs to inform the unit before the appointment, they have a quiet room and patients can ask for same sex staff. I’ve never had to deal with the bureaucracy like you have, it does still seem that the world sees autism as only a childhood condition.

Roy, how do you get the help at hospital appointments?  We're turning in circles.  Social Services say it's mental health, it definitely isn't - it's a sensory not mental health issue anyway.  Mind CASS were clueless as to what to do.  PiP (to buy in the help) accept I cannot access medical care but give me no points under 'access to medical care', so that's a no go.  My special care dentistry referred to the learning disability and autism team, who it turns out are commissioned to help ONLY if you have both a learning disability AND autism. There is an advocacy agency, who are great, but they can only advocate not provide the other supports and to get that for a single GP's appointment means ringing them, waiting for two weeks for them to allocate someone and then meet with them before an appointment can be arranged - no good if I need an appointment tomorrow. Everyone says "go see your autism charity" as though I have a personal autism charity poised to jump to every time I need medical appointment. OH at work, a social prescriber and my dentist are all trying to find support somewhere just so I can have my treatment, only to be sent around the same circles.  This has been going on for over a year.  Truth is nothing is commissioned to allow me to access health care.

If you've found another way.  I'd be interested.

Thanks, it’s just the knowing why I’ve struggled for the last 50+ years and I haven’t been mad or bad. It’s putting the demon to bed. I hope you find your answers.

I totally get what you mean about needing a definite answer because it’s how your brain works, this too is my struggle and reason for asking. 
logically I know nothing will change but I just feel like I’m stuck like I need a reason to act and feel the way I do.

I hope you get the answers that will help you.

Hi, I’m 55 and going through an assessment at the moment, you’re right nothing will actually change, maybe some help at airports and hospital appointments . For me it’s the validation I  need, the definitive answer. I do already know the answer, unfortunately the way my brain works, it needs proof. I have quite a lot of medical people on my wife’s side of the family, someone wrote on here a few days ago that they were told they shouldn’t say they are autistic without a diagnosis. I found that really hurtful, it’s the first question I get asked by the family members, “ have you actually been diagnosed?” It’s more or less, “ you don’t look autistic,” The fact is, they don’t work in the field of autism. I’ve read 10 times more on autism than they ever will. Sorry to rattle on,