Misunderstanding of Autism

My reason to seek an assessment is for validation and some sort of closure. For over 50 years I have known I’m different, I just couldn’t workout why, It was only accidentally listening to a radio program that ‘lit the fuse.’ 
The rise in people seeking a diagnosis is not a fad, people are becoming more aware of autism and there are generations who were never able to access any kind of help, they are the ones who are now becoming self aware. From originally realising I’m autistic to an assessment next month has been nearly 4 years. Nobody would do that lightly.

I know I’m autistic, the powers that be may agree, the end result will be a piece of paper. Not much for a long wait, this piece of paper hopefully will stop comments that I’ve managed fine for 57 years plus many other ignorant comments, that 57 years was me struggling every single day and constant thoughts on ‘checking out’. 
Validation is definitely not a fad. As for humanity, I don’t know. I know its only a fable but I can see why Noah only wanted to save animals.

Vile people often do very well in society, at least outwardly. It is something that puzzles me. Luckily, though I was only diagnosed after my early retirement, my boss was very fair, though he expected high standards.

GeekyTim said:

It has to be a Mini

I know what you mean. For me, it’s laptops – it has to be a Lenovo Thinkpad (the only laptops that have a trackpoint).

Regarding your question about diagnosis, I don’t think it’s faddish. But I do think it depends on your circumstances. In my case, having done several of the screening tests and read widely about the spectrum, I recognize myself as clearly autistic. So I don’t see much benefit for me in having a diagnosis; I would merely be ceding my agency to a professional gatekeeper.

When I am alone, I still rock, despite being nearly 57. It helps me a lot.

I was fortunate that the company I worked for paid for my diagnosis, but only after I highlighted the extreme prejudice and harassment I went through, Before I proved the situation, they allowed my boss, in their presence, to tell me I had to leave my autism at home, that any reasonable adjustmentsa were too expensive (despite it costing nothing because I had what I needed) and telling me mI was asking for things I was not asking for.

I'm one of those maths and IT people. I shouldn't be thought of as different within the circles I was in, but this single boss went on an ego-trip because it made him feel powerful.  I have since heard about his abuse of his kids and family home, and his demand for money to move out of the family home, despite court orders. He was so vile!

Today, the last day at one of the hospitals where I support patients, I helped an autistic person get discharged. He was on Section 2 because he's autistic and has very strong views about certain things. Nothing to get locked up for 28 days for! He's quite capable of looking after himself, but he just doesn't like interaction with people who don't agree with his views (veganism). 

It is so disturbing that mental health (inc. crisis teams) don't recognise us as just being different; they sometimes assume that our difference is a mental health issue. It is not. This lovely, caring guy is finally getting home, and acepting help, whereas previously his lack of communications was being seen as an issue.

Communicate with us in a way we are comfortable, and we will respond appropriately.  Communicate in an agressive way that scares us because we don't understand what is going on, we will react in a way thay might be seen as non-conformant, and therefore needs locking up!

I'm quite cross about what has happened. He should not have ever been there, but his Autism led to him being sectioned. This is unacceptable. 

A lot of the clients I work for are neurodiverse; I recognise it, tell them about how it makes us feel, and something clicks in their minds. They suddenly realise they are different, and what they are is ok; it's normal for us. It's that society has issues acepting us for who we are, and our special interests are seen as obsessive. It's not - I buy another Mini once the old one starts to need a lot of work. It has to be a Mini; that's me, it's what I identify as. And that makes no sense to people who don't understand our differences, or 'obsessions'. There is NOTHING wrong with those.

Given that an autism assessment is either difficult to get and takes a very long time (NHS), or is expensive (private), I suspect that a vanishingly small number of people seek one because of a perceived fad. I wanted an assessment because I needed validation of my autistic status, I had worked out that I was autistic myself and found that it best explained me, my problems and difficulties.

The only things that most people in the general population know about autism are that autistic maths savants who can do pi to an indefinite number of places exist, and there are silent children who sit in a corner rocking, or can become violent for no obvious reason. It isn't really a surprise that intelligent autists find that their autism is disbelieved, or that people do not believe that autists can function well in the world and be productive.

I thought you did but wanted to do a literality check.

The best of luck with ACAS, it's utterly crap that conciliation is a mandatory part of the process. If it all breaks down and worst comes to the worst do some research into constructive dismissal. It will.put on the record that you've had to leave due to your employers unreasonable behaviour.

With you with the home centricity. I've had neurotypicals glibly say 'why don't you just find another job then (previous post)'. It's just not worth trying to illustrate the anxiety that would kick off.

It'd be good to hear how things go if you'd be willing to drop back in here from time to time.

Yes I meant the organization's response is pathetic.

I have occupational health recommendations stating I would be fit and capable with the adjustments noted.

I am at conciliation stage with ACAS before a possible tribunal claim.

I have about 1GB of data in an evidence file going back to before my ASD disclosure where, I knew there was some issues and was asking for help to solve them. Instead I was told that was part of my management duties.

My ASD makes me very home centric and the thought of going somewhere else fill me with angst.

I am really pleased you have a supportive manager and wish you the best.

I work for the NHS, but in England. Your right, the organisation doesn't care. I happen to have a manager who does though. Purely by chance. We spend a huge chunk of time at work so feeling like you do must be awful. When you say 'how pathetic' are you describing the response of the organisation to your reasonable adjustments request? If so, agreed, totally pathetic. 

In terms of work place the thing that was a game changer in my work place was me asking for an occupational health referral to specifically look at the impact of my neurodiversity in my work place. My trust contracts out occ health so it was totally third party.

Bits of paper shouldn't matter, but the world we inhabit means they do. My report made it clear I could do my job, but also outlined adjustments. That's a legally binding document. If it's not paid attention to then I can lodge a formal complaint under the disability discrimination act. 

Don't know if something like that is even possible in Scotland. I would find looking for a new job very daunting, so this was at least something that made work more liveable.

Thank you for your honesty.

Okay first off in case you are struggling with this: 

Mr T said:

because I asked for help and adjustments....how pathetic

You are not pathetic for asking for help. I know you didn’t directly say that, but you’re not weak for wanting help. The people in management are weak for not being able to assist you.

Now this might sound super drastic, but continuing on where Stuart333 left off: Have you considered looking into similar positions elsewhere in the UK or out of the country? Moving out of the country with an Autism diagnosis can be tricky (some countries like New Zealand don’t allow people with Autism to immigrate in), but you might be able to find a better niche outside of the Scottish system?

I'm in a very niche scientific profession and in Scotland each of the other hospitals all talk. So no chance of finding a position in my profession. Therefore I'm fecked.

I was always a big believer in union but my experience is not great at the moment. I get the feeling that they would rather keep me in employment  than fight the overt disability discrimination.

Sorry to hear this.

Is it possible to move to another hospital or trust where things might be different?

Were the adjustments compatible with the role?

Are you a union member and would they be able to help?

I was diagnosed at 53 a couple of years ago. I always felt that I was missing something and found out I wasn't it was everyone else!!!

Since then my life has been in freefall. I have lost my career because I asked for help and adjustments....how pathetic.

I am lost in a spiral of uncertainty due to innate bias and discrimination by my management.

I was well paid but now face being moved at best to an unfamiliar role within the NHS or at worst my employment will be terminated.

This was supposed to be the answer but all I have encountered is misunderstanding. To hear my management talk I cannot do my job. Hell Ive got a PhD which is way more than them. However, they can talk the talk whereas I really struggle to do so but I do know my subject.

I actually thought the NHS would be supportive but have found that all they do is treat the staff as a piece of ***.

I am so sad to read your post, and also very mad at the same time. It does little to change my view about people in general, where is Batman when you need him? I am in my 50's as well trying to get to grips with things and working on restoring my identity after decades of masking. I agree that there is a massive misunderstanding around autism, ranging from those that think is some kind of talent with special powers to the danger to society. I would not want to be in the US just now with Donald Trump and his cronies putting in the bin, years of progress. It really makes you think twice about disclosure....I am a very private person anyway but this kind of thing just reinforces my opinion. Wishing you well from a fellow Geek....

I think the reason it is being called a fad is there are people who look fairly normal being diagnosed. They would not have been in the past and/or would not have come forward for fear of stigma.

What they miss of course is what you see on the outside does not explain what happens on the inside, or the more subtle problems in relationships, jobs, burnouts, stress and health that occur. Or that by putting so much into work you don't have the energy for anything else, plus the sleep issues, isolation and depression.

Masking works unless people get very close, which you may not allow people to do, or you may have been exploited or misunderstood when you have.

Trendy types have talked of taking journeys of self discovery for decades. It could be viewed that this is the same sort of luxury thing, except the impacts are more real. 

I don't see evidence many are seeking labels, what they want is confirmation so they know, and can then adapt or ask for help to find a better life. I don't see how that is bad.

I'm 55, fairly recently diagnosed although didn't come as any surprise to me, also work in mental health services in England. I think diagnosed/not diagnose should be a very individualised decision. I took the step because I went down the autism wormhole and got to the point where I felt lost and just needed an objective other to rebalance. 

Thing is, that's pretty much it, a diagnosis. There is very little afterwards from NHS services in terms of 'ok, that's a starting point, let's create a map of things you find challenging and work out autistic ways of minimising their impact. So even if we do get a diagnosis, most professionals still don't spot the difference between autistic burnout and depression. Hence ending up in mental health units. Which, by the way there is building evidence makes things much worse for autistic people. 

After my diagnosis I felt like I'd been dropped down a wormhole and was free falling with no idea where the ground was. Everything I thought I knew about myself after years of training and experience was at best half truth. I'm lucky, I have an autistic grown up daughter to bounce things off and a really compassionate line manager who has helped me keep work as manageable as possible. So it is possible to have good conversations with neurotypicals...just not common. 

You sound like a compassionate and curious person. Somewhat common amongst autistic folks I find. Keep up the good work!

Thank you so much for this reply. It's how I feel too.

First of all, thank you for doing the work you do! I worked in a mental health unit many years before I knew I was autistic and it's not easy work by any means. Back then, ten years ago there was a huge lack of understanding of autism and obviously people who are autistic can display challenging behavior on wards because they're locked up against their will with no routine in unfamiliar surroundings and strange people. 

I'm newly diagnosed, 32 years old and still very much coming to terms with it. I've been listening to a book 'Spectrum Women' and I find myself laughing at how much I relate to the content and it's almost funny that I've spent the best of 30 years blind to the fact I'm autistic and just struggling along. I haven't told anyone, only my partner knows and now my entire management team as I'm requesting reasonable adjustments. I think in time the diagnosis will allow me to be easier on myself, when I can't do something or I'm overwhelmed or upset, it's okay, I'm autistic and I need my routine, my safe spaces and time to process things. When I was diagnosed the psychiatrist explained that in recent years understanding of autism has changed and it's leading to more people being diagnosed so no, I don't believe it is a fad. 

I am very happy to have my diagnosis. My wife and my kids are also neurodiverse (but not all of them diagnosed yet).  It's why we work so well together and clash so much!  I am recognised for being a compassionate, gentle and empathetic person. My empathy is one of my strengths.  That and Maths!

What I want the world to understand is that this is a SPECTRUM! We range from those who don't speak to those who don't stop talking. We have interests that focus on nothing else, to having interests that make us want to understand everything else. We are timid, and we are furiously curious.  This world would not be as it is without people like us.

I would rather spend an eternity with those like me than 5 minutes with someone who doesn't understand us.

I agree about understanding yourself, and that diagnosis is a choice. We don't need it if those around accept who we are. Unfortunately, too many don't, especially in corporate life, where being a psychopath is preferable!  (I generalise there!).

First off, we can do a lot of stuff right. Sounds like you're making a big, positive difference in people's lives with your work. Second, diagnosis is definitely both on the rise and in an increasingly public spotlight. For that reason, what was once a very personal issue is now a very public issue, however it doesn't erase the fact that all people need to focus on working with folks different from them. I think it can be a difficult discussion, since everybody's experience is different—factors from accommodation needs to family stigma, to government safety all play a factor in people's decisions—but it's rough no matter what. I think what we shouldn't do is politicize healthcare and disability, but unfortunately, these topics will always be so. 

What's most important in my opinion is knowing yourself and having a strong support network around you. If that means formal diagnosis, great. If it means using autism-related resources and educating your surrounding friends and family, great as well. I'm still trying to figure out the balance, and I wish you the best luck in this as well. It's a constantly changing social climate, so answers never really stay the same.

Love,

Max