How did an adult autism diagnosis change your life?

[redheadonascooter]

I have just done an online request to my GP for an adult ASD and ADD assessment. I've been building up to doing it for ages and even though I know waiting lists are huge and it'll take ages it feels like I've just taken a big step.

So, in the interim (whilst I'm waiting for probably two years) tell me about if/how your diagnosis as an adult changed things for you. Or if it didn't? Did you feel different? Better?

I was diagnosed with autism six years ago and adhd last year. I'm 51.

It has helped me understand why I am the way I am and enabled me to come to terms with things that have affected me throughout my life. I no longer feel like a weird misfit. It has answered so many questions about myself that I had. I finally have a meaningful identity.

However..... the knowledge has affected my outlook on my place within society and in relation to other people and I experienced a mental breakdown as a result. Basically, I've found that I can no longer relate to other people at all and I no longer have anything to do with neurotypical people because they have caused me so much pain my whole life. I can't describe the feelings adequately, but I feel totally removed from others now. It's like a sort of existential crisis. I have nobody to help me process these complicated feelings, so I become depressed and have to take medication. These feelings frighten me at times.

The adhd is just a damn nuisance and prevents me from doing things. I'm not medicated. I would love to read books, but I can't.

I'm glad I found out about myself, but it has opened a Pandora's box and I can never be the person I once was. I feel as though I'm on a boat steadily drifting away from shore, out to sea, to an unknown destination and I may fall overboard and drown.

My area provides no post diagnosis counselling or support.

It's a worthwhile journey, but you don't know where it'll take you.

I feel like this too ^

It gave me an explanation of why I felt 'wrong' but it also made me analyse every relationship and friendship I ever had and I was hit with the realisation that I am absolutely awful at judging people. Every person I have ever been close to, with the exception of DH (which was luck) has been a bad one. I now know I can't tell if someone is nice or has an ulterior motive which means I no longer want to make any new connections, ever.

I'm glad I know why I reacted the way I did earlier when I had to nip out to the shop, however knowing that is me and I can't just feel 'normal' about going to the shop is quite depressing.

I am pleased to have the diagnosis but facing up to the implications of that has been quite hard.

Our area doesn't diagnose adults unless they are picked up on whilst going through the mental health services so I had to wait years and pay for an assessment privately.

Wow thank you both. That's really interesting.

My GP has sent me two scoring things to complete and send back to him (one for ASD and one for ADD). I've done them and scored well over the threshold for both. So it looks like a referral will be coming, just waiting to hear back.

I could go private if I really had to. But I am not in a desperate hurry. This has been on my mind for some time, since my daughter was diagnosed and I started attending courses and realising they could be talking about me, and generally learning about autism. Slowly the penny has started to drop for me. All the things that have never made sense before, do, if that makes sense.

Good luck, I was the same. Realised when my DD was diagnosed.

It's not all bad. Diagnosis has allowed me to be who I am, not who I am expected to be. To the outside world it looks like I have 'got worse' since diagnosis but the truth is I'm actually just allowing myself to be me. I no longer panic to answer a question, from anyone, I will say 'I need time to think about that' or 'I'm not too sure, let me think' whereas before I always felt expected to be able to process and respond straight away because that's how regular communication takes place. I am happy to simply say 'no' to things, rather then feel like I should be saying yes and trying to find an excuse. 'No thanks, I won't be able to' sits fine with me now when I am invited somewhere (rare these days) before I would have said yes and tried to get out of it or turned up and felt absolutely awful the whole time. I think I was quite negative when I replied last night, but it's actually one of the best things I ever did.

I was at uni when I was diagnosed.

It helped me accept myself as it gave me a reason for a lot of my struggles.

It meant when I accessed other services like therapy I could tell people and they could take that into account in developing strategies for me and a framework for considering my difficulties.

When I access medical or welfare benefit services more generally I can get adjustments put in as well and explanations for some of my behaviours.

If I have difficulties with certain situations I can tell hosts/friends etc and either have adjustments made or just a reason to leave without causing offence/more understanding about my behaviour.

Possibly helped me to claim PIP and consequently the disability elements of WTC, although difficult to know how much of my eligibility is due to mental health issues and how much due to the ASD.

A friend of ours was diagnosed as an adult and it helped them understand how they felt about things, want some things that came easily to others didn't to them and why they behaved a certain way sometimes.

It also helped us as friends too understand those things. It helped us to help them when they were struggling as we approached things from a different way than we maybe would have otherwise (only a few close people know but it has helped for those closest).

Good luck with your journey.

I think I was 60 or 61. People wondered why I wanted my diagnosis - I told them I was tired of people rolling their eyes when I say I'm autistic. Autism explains so much about me - to me, that is, I no longer care what other people think. All my family are autistic, though we don't all express autism in the same ways.

I am 37.

DH has asked me why I'm seeking a diagnosis (or investigation, at least) at my age. His point being it's not like our child who will have adjustments and help made for her thought out school and beyond. It will change nothing really to find out either way. But I feel like I need to know. Because if just makes so much sense, and there have been so so many things over the years that I've struggled with or have bothered me that bother no one else around me and this seems to me, at the moment, to be why.

DH has asked me why I'm seeking a diagnosis (or investigation, at least) at my age. His point being it's not like our child who will have adjustments and help made for her thought out school and beyond.

It will change nothing really to find out either way.

It will change things for you on a personal level. It can also help you access adjustments in the workplace which could benefit you, or things like extra time in an exam/test. It will help you understand who you are and enable you to make your own life easier. It will give you an explanation, if you feel you need or want to offer it, to everyone/someone else. It will make you feel validated.

Excellent posts. Thank you.

@legotruck Thank you. You're right.

Well I just heard back from the GP, we had a chat about why I thought I could have ASD and he completely agreed that an assessment is appropriate. So he's put the request in.

It will probably take a long while as the waiting lists are huge, but that's ok. Just glad to have the ball rolling.

Best of luck - I've just been referred by my GP too, and yesterday I got a load of paperwork in the post with multiple forms to fill in and return. Bit daunting, but I think it will be worth it in the long run.

The fact that my GP agreed to refer me has made a difference to how I feel already. Now I know why I'm the way I am, I feel a lot better and can cope with it more.

May I ask a genuine question? Why do you think so many people are on the spectrum?ADHD,Aspergers,ADD etc. It just seems to be everybody now has this condition in some form or another. My question is not perhaps coming across well, please excuse if I offend anyone. I genuinely would like to know from people who know what they are talking about.

Well, social services and the schools listen to me now, but only really when my therapist acts as an advocate. I've constantly been told to modify my behaviour, which is all I've been doing for 53 years.

The process was awful as you have to bring up your significant deficiencies. The result: legal protection. Better able to ask for help with difficult things. Good for when you are older and it all becomes too difficult to mask. Only recently diagnosed but it feels better to realise this will be difficult because I am autistic and to cut myself some slack and not expect myself to be NT.

@Gothichouse40 Your question is ignorant and not based in fact. Less than a million people in the UK have an autism diagnosis. More women are now being diagnosed because the different presentation was ignored by the medical community for many years.

If you genuinely don't mean to be offensive, then take some time to read the National Autistic Society website and learn some facts.

Orf1ABC, I'm so sorry and yes, I am ignorant of much to do with autism. I did not know it presents differently in women either. Im an older person where these conditions were not really known about and getting diagnosis was difficult. I will go and look at the website. It was a genuine question.

I'm not offended @Gothichouse40.

Honestly I don't feel like more people have it. People have always had it. The difference is, more is known about it and as time goes on, more and more is being learned about it (like lots of conditions).

I remember when my child was diagnosed they asked about family history and there is no diagnosed ASD or any neurodiversity in either family. They said that that isn't uncommon, but if you look back carefully you'll probably find somewhere in the family you'll have someone much older who was considered a bit odd, or unsociable or who was 'eccentric'. It's certainly true for us.

Even in 2021 a huge percentage of girls with ASD will be overlooked because girls often present so so differently to the stereotypical view of autistic children, mostly boys. The diagnostics are all centred around the presentation of boys. They (girls especially) can mask amazingly well (my child can and does at just five years old). Women who are older will have been missed as children and it's only now that it's becoming more apparent.

But yes, if you want to learn more the NAS has some good resources.

It's really positive that you want to learn more, that's the best way we can promote awareness and acceptance. If you're particularly interested in autism in women, this piece may be helpful. I know for me and majynothers

taniaannmarshall.wordpress.com/2013/03/26/moving-towards-a-female-profile-the-unique-characteristics-abilities-and-talents-of-asperwomen-adult-women-with-asperger-syndrome/

• I know for me and many others it helped our diagnosis click into place, I recognised myself in it rather than the typically male presentation that forms the stereotype of autism.

@mybrainhertz, your post really strikes a chord with me. I have recently been diagnosed with ADHD and am in the system for an autism diagnosis - I can't afford the £££ to go private after paying for my ADHD assessment.

Slowly but surely reasonable adjustments are being put in place for me in work for the first time EVER. So I don't have to run away from this job - there are identifiable reasons for my sometimes less than perfect performance.

I too feel I can't bother with NT people any more as too many have expected me to fit in with them and treated me like something defective who was fair game for bullying and exclusion. I'm sick of loud, boorish people absolutely everywhere and long for the day when there are special housing groups for people like us away from the anxiety inducing sensory overloads less enlightened neighbours subject us to over and over again.

@MustardRose

Best of luck - I've just been referred by my GP too, and yesterday I got a load of paperwork in the post with multiple forms to fill in and return. Bit daunting, but I think it will be worth it in the long run.

The fact that my GP agreed to refer me has made a difference to how I feel already. Now I know why I'm the way I am, I feel a lot better and can cope with it more.

Yes that’s how I feel too.

Thank you for your replies. Ive found them all interesting and I have had a look at the website. It gives very good information and yes, I did wonder about have the conditions mentioned always been here, but we just didn't know enough.

@redheadonascooter

Well I just heard back from the GP, we had a chat about why I thought I could have ASD and he completely agreed that an assessment is appropriate. So he's put the request in.

It will probably take a long while as the waiting lists are huge, but that's ok. Just glad to have the ball rolling.

This is fabulous news. I'm so pleased they have supported you so far.