To wonder whether anyone had found getting an adult autism diagnosis to be a negative experience overall?

[MaybeND]

Nearly everything I’ve heard about adult autism diagnoses has been really positive. There’s lots of, ‘Now my whole life makes sense!’ …. ‘I understand myself so much better now!’ …. ‘I’ve finally found my tribe!!’

I’m wondering though whether has found a diagnosis (or even just the suggestion of one) to be a negative overall?

I’ve had the suggestion of seeking an autism diagnosis suggested to me by several therapists and have declined. I don’t think it would help me at all.
it seems to be the answer to all struggles at the moment and I believe over diagnosed.

I suppose it depends what your expectations are. Some people are just seeking some level of confirmation which puts a formal explanation and a name to why they’ve always felt a bit different or struggled with particular functions. A good friend recently had an ADHD diagnosis and it really helped her in that respect, though she’s also very driven and upbeat and has since put a lot of her own steam into working out how she supports herself better and what she can put in place, and the diagnosis has guided that really well. But I have a couple of acquaintances who had ASD diagnoses and fell a bit deflated afterwards because following it they expected more to be given to them - and in reality there’s not necessarily a lot of support or assistance for adults just out there which suddenly gets offered simply because you’ve been diagnosed.

It was negative for an acquaintance who was all set to emigrate to Australia a couple of years back - it disqualified her from obtaining the visa she needed, and she has said she wishes she’d not been through the diagnostic process.

How on earth would a diagnosis of autism prevent an Australian visa!?

Edit to add, I googled and saw that it can be a factor in getting rejected. Wow.

I imagine it’s a case by case thing, so won’t bluntly apply to everyone; though broadly, some countries are wary of immigrants who they perceive as likely to place a burden on services rather than become net contributors.

I don't think I've known anyone who has found it negative personally. I do know people who were disappointed with the lack of any support, or family members being off with them about it. There can be a period of grief as well, if thinking about how life could have been different, ie either without being autistic, or more commonly, how life could have been different if it had been identified when they were younger.

I wouldn't pursue a diagnosis as an adult if I was coping OK. There isn't any support offered to most people and it can have unintended consequences like the Visa issue highlighted by a previous poster, plus I'm wary about having a diagnosis on my medical file for fear that doctors would be too keen to blame any medical issues on autism. It's already bad enough as a woman to avoid getting everything attributed to anxiety, even if you have no diagnosis of anxiety.

Australia are quite strict about immigrants not needing healthcare. It won't be on a case by case basis, they are just looking for the slightest reason to exclude you.

Sorry this answer is more slanted to ADHD but hopefully still relevant.

I had a private ADHD diagnosis. This was after years of feeling different, struggling with socialising in groups and deadlines, stress and quitting school/ jobs, feeling extreme exhaustion etc. I kept wondering when I would grow up, i.e. be able to "do all the things" other adults did like work/look after domestic stuff/have a social life without chronic burnout.

I am currently in the middle of an NHS autism assessment after the ADHD-diagnosing psychiatrist said I was presenting with ASD traits as well.

I'm old enough not to have to give a stuff about what employers or other people think or need a visa. But I do get some people's reluctance to get diagnosed in case disclosure to their employer makes life more tricky. Some employers will be helpful, others will not understand at all. I am very open about my diagnosis. I am self-employed and am gradually building sensible boundaries to avoid overwork and trying to communicate such in a positive way to customers and others. People have been largely very very supportive. What I don't do is present myself as a "neurospicy creative" like ADHD is a really fun thing. That annoys me. If ADHD is so positive for you why did you need a diagnosis?

With regards to NHS, I want it firmly on my records because I have always struggled to engage with healthcare and am starting to understand why.

My main problem is family. Few accept that I genuinely have ADHD as I have masked pretty effectively for decades. Again, I am building boundaries to maintain some balance in life but it is a struggle as I am at the life stage of elderly parents needing lots of help. I am happy to help but cannot take the full burden as I know it will just push me to total burnout.

Did I grieve? Not really. I'm angry that women like me have gone unnoticed and undiagnosed for years, yes, but I don't wish away meeting my DH and friends and colleagues that I wouldn't know if my life had taken a different trajectory.

Has ADHD diagnosis solved all my problems? And will an ASD diagnosis do the same? No. But it has helped me understand myself better and where possible organise my life so that I'm less stressed and over-committed.

Will an ADHD or ASD diagnosis help you? I have no idea as everyone is so different in the presentations of ADHD/ASD. My very rough rule of thumb answer to anyone who asks if they should get a diagnosis is this: are the symptoms having a negative effect on a daily basis? If not, then maybe you aren't ADHD or ASD. E.g, misplacing your car keys occasionally is normal, losing stuff multiple times a day isn't.

I would agree that there isn't much support outside meds or hiring a private therapist. (I can't take the meds for other health reasons and not in therapy) I have been offered a coffee group at a local supermarket and a FB group. And maybe NHS CBT if I wanted it. I am told by everyone I know who has tried CBT that it's useless.

Yay, ASD-bashing time. Again.

I was diagnosed with autism in February at the age of 36 - for me, it’s been nothing but positive. I always suspected it (it runs in our family) but when an external person confirmed it, it’s like everything fell into place. I was finally able to accept why I struggled with “X” when nobody else did, or why I had to do Y and Z in order to cope with certain situations.

I’m very open about my diagnosis and everyone has been incredibly supportive, kind and understanding. I don’t feel like I have to mask as much anymore and I’m much more confident saying “no” as well.

I have bpd which is most likely wrongly diagnosed autism but I dont see the point in pursuing it just to sit on a waiting list for years to be told I have autism like yeah no shit sherlock and then be offered no further help or medication whats the point. I dont know if autism is stigmatised within the nhs but bpd definitely is and iv been treat shit by health care professionals ever since so I dont see how having autism on my records will help

I think something that non autistic people struggle to understand is that for a lot of people with autism, 'certainty' is an issue, and that's why getting a diagnosis can feel very important.
I had a screening done by someone who pretty much wrote the book on autism (well, wrote the diagnostic procedure used in their area, and had headed up that part of the service for many years) who told me after the screening that they were 90% sure I was autistic.
It was a multi stage private assessment so they suggested I could leave it there if I wanted. I chose to go ahead and pay for a full assessment.

Afterwards they (nicely) pointed out that most NT people would have accepted that someone with their level of experience was 'probably right' at the first stage! However that didn't occur to me, I am black and white with my thinking at times and there's no way I personally could have 'allowed' myself to conclude I was autistic without an expert going through the evidence with me. I have heard a lot of other late diagnosed adults say the same.

Thank you all for such an interesting range of replies.

I had a psychologist suggest I was autistic and that I might like to pursue a diagnosis. To be honest, this suggestion has mostly just made me more paranoid. I already had a lot of social anxiety and this has just made it worse. She’d only just met me, which has led me to worry a lot more about whether I somehow come across as being a bit different (for reasons I’m oblivious to) and whether this is obvious to most other people generally.

I’ve dabbled in quite a few books about autism now but I can’t honestly say I’ve felt the response most autistic people seem to that, ‘Yes, this is me! My whole life makes sense now!’ Perhaps that means I’m not autistic. I honestly don’t know. There are aspects I identify with but also aspects I don’t (e.g. I have zero sensory issues). Whether it would be helpful to know for sure, so don’t know either.

Yes. Very negative. One of the biggest mistakes of my life.
It was done as a box ticking thing to try and show my youngest DC needed a diagnosis for actual support as it's genetic.

Insead I was criticised by my GP and told I needed parenting support and it was my fault my DC struggled. As a result she didn't get any support and I had to jump though endless thicky parenting courses.

Wish I'd never done it as I can't get rid of it and my child is still struggling.

The negatives for me are the lack of support and also due to being very highly masked no-one really believes me if I choose to tell them... but I don't really care about that as time goes by. It's been incredibly positive for me, (& my DH and kids,) to be able to better understand myself and make the necessary allowances. Haven't found my tribe at all but that's not necessarily a negative for me anyway.

@MaybeND sensory issues are common for people with autism, but they're not actually part of the diagnostic criteria. You can be diagnosed without any. The primary thing for autism is social and communication difficulties that started in childhood.

I also thought I didn't have sensory issues but realised over time I do, just not the stereotypical ones like not coping with labels in clothes. I'm 'sensory seeking' - I love going to places with loud music and lights that I can let wash over me - but 'jumbles' of noise, such as a bar where there's conversation and too many people is very overwhelming. I also freeze when I go into new environments, like a restaurant, which I used to think was anxiety but realised now that it's sensory overload. It's similar, but it's more like my brain freezes, there's so much to take in I can't make sense of a menu, queue, etc.

The other aspect that I hadn't realised that makes me autism less visible/obvious is when I'm overwhelmed it's inward rather than outwards. I go very quiet, placid, calm. Whereas people think of autism as people getting visibly emotional, angry upset. It's the difference between meltdowns and shutdowns.

I'm not saying you are autistic, just that there is a lot of variation.

I was diagnosed in my late 30s (Level Two / moderate needs).

I'm glad I did it. I'd say the negative for me is a kind of "Well, what now?" post-diagnosis. I now know that my sensory/workplace/other difficulties are legitimate, but the lack of support that exists for them means that I have nowhere to go with that diagnosis/knowledge iyswim. It's a bit like discovering that you are allergic to sand when you live in a desert.

I have applied for Access to Work and I hope if it's granted that I get a bit more help, but the bottom line is that things are very bloody difficult and I'm not sure there's any way to make them easier. And that's a tough realisation.

You mention speaking to a psychologist, I'm not sure if that means you're involved in any mental health treatment/assessment? You don't have to share, but I would say if you are it's worth thinking about. There are subtle differences between how ND and NT perceive/identify and communicate feelings, which means that there can be a mismatch if your receiving treatment that is by nature, designed for someone who is neurotypical.

I had several rounds of CBT and counselling for anxiety when younger and it didn't help at all. I later learned that CBT often isn't a good match for people with autism - I don't need anyone to talk me through a pattern, I see that very easily, it's the emotional side I find hard.
When I had counselling I always felt the counsellor made a lot of incorrect assumptions and again, later realise why! I can recognise other people's feelings but not my own so I appear to be withholding/guarded when I actually just don't know how to answer.

I always wondered what expectations of support after diagnosis people have other than having a better understanding of self and being eligible for reasonable adjustments at work (which are not diagnosis specific anyway) there is not much else?

Yep - my GP was very clear about the fact that there’s no real support available on the NHS for people with “high functioning” autism. I wonder if some people have been a bit misled or have read too much online without actually looking at the facts.

When I got my diagnosis there was very much a sense of “well, what now?” attached to it. I actually pay for private psychotherapy which has been incredibly helpful but it’s expensive and is obviously not accessible to everyone.

For me, my diagnosis was important because it meant I could understand who I was and why I had the feelings etc. that I do. I never expected any wider support but it is nice to be able to say “actually, I struggle with X due my autism, can we do Y instead?”.

I think the opposite may be true for me. The psychologist is ND herself and all her family are ND too. Our relationship frankly has been messy with lots of misunderstandings. I’m wondering whether this may be because I am not in fact ND, just socially anxious.

It’s been suggested before that I might want to go through an autism diagnosis process. My reasons for not doing are:

• I’ve been quite successful in my life and goals. I think me getting a diagnosis is unhelpful to people who do actually struggle to thrive with autism, and so given it wouldn’t change anything about my life I have no need to take someone else’s space in the diagnostic process, or to contribute to a perception that you can get on just fine with autism if you are so inclined.
• It’s not a black and white objective diagnosis. If it was a blood test then maybe I would, but given it is a broader assessment then it’s possible to be assessed incorrectly. I’m quite big on personal health data, but I struggle to perceive an autism diagnosis as data in the same way.
• Ive seen diagnoses in my family where they now use the diagnosis as an excuse for bad behaviour and think they have no power over the traits related to their diagnosis. I have ways that I deal with sensory overload/social fatigue/needs to decompress etc. I can see how I would do away with some of those coping mechanisms and just be like “oh it’s the autism”, but those masking/coping mechanisms are the reasons I’ve been able to progress at work and meet goals etc, so I don’t want to give myself an excuse to take an easier path.
• If I am autistic, it’s just part of the way I perceive the world, I don’t need a label for it, and if I had one I doubt I’d share it much with others. I have aphantasia for example, and feel no different now I know it has a name. I operate in the world in my own way, just like everyone else. It doesn’t need to be clinical.

A hefty caveat to the above is might not have autism, and so my view on the above is totally invalid. But I wouldn’t be hugely surprised to get an autism diagnosis based on the reading I’ve done. I think it can be positive for some people, but if you’re not yearning for that explanation or for a reason as to why you don’t fit in, then I personally don’t see what benefit it could bring.

I suspect that if I underwent the tests, I would be found to be on the autistic spectrum. I don’t have the tests because I don’t understand what possible use it would be. I have a successful life. I have some difficulties in some situations but I just manage those in my own way. I’m 47, I just don’t see how it would help; it’s just me.

That’s not to denigrate the experience of anyone who does want a diagnosis and who would benefit from it.

Yes, this is the reason for me also. I don’t want it on my medical records because I do believe it will close some doors in the future. There’s not any benefit to me getting an official diagnosis, I’d rather spend the money on a holiday.

This is the flip side of “it all makes sense now” isn’t it. Scary what can happen if it’s official. People also question your intelligence which is ironic considering many autistic people have above average intelligence (not including those with high support needs though I also think they’re highly intelligent just not in a mainstream sense, judged by society’s strict standards)