? Benefits of diagnosis

Hi Bumblebee,

I'll answer succinctly (unusual for me!) in terms of what the diagnosis meant for me.  I got it at age 56, by the way.

1) Finally, an understanding of my entire life.

2) Validation that I wasn't simply 'inadequate', 'stupid', 'anti-social', 'weird', 'a freak', 'unable to focus', 'a dreamer', 'a loser', 'a retard', 'strange', 'hyper-sensitive', 'a wuss'... or any other label you care to mention.

3) Something I could use as evidence for my need for reasonable adjustments in the workplace.

4) A sense, at last, of who I really am.

There are inevitable downsides.  Supposing I'd been diagnosed earlier?  Would my life have been so much easier than it has been?

On the whole, though, it's been positive.

In essence, it changed a lot.

But that's just my experience.

Hi I think the sounds that bother me most are things most people don’t seem to hear mainly the buzz of electrical appliances (I have to have music or sometimes audiobooks on all the time at home to cover it). I have problems with noises that echo like bowling allies and if I’m tired or stressed I don’t cope well with the noise of crowded places or buses but I regularly go to concerts and music festivals and have never really had problems with the noise there not really sure why but I don’t sleep too badly in a tent in a packed field! It took me a long time to realise that most people don’t have a problem with sound in the same way some sounds seem to echo down my nerves and hurt my skin. A few years ago our cinema changed its snack advert before all the films it now has a very loud kind of warbling bass note at the end I can’t listen to I have to put my fingers in my ears luckily my best friend ( after looking at me as if I was slightly insane when I explained that the sound hurt my skin) always lets me know when it’s over so I don’t miss the film.

I work long shifts at times and find that my first day off after this I can’t cope well with going out or seeing anyone I just need the time on my own to the point where I’ve lied about being ill so I can cancel plans. I used to do this at school a lot needing to take a day off every couple of weeks of so where I would be able to have the house to myself while my family was at work or school. At the time I didn’t realise it was because I needed time alone I just used to get so exhausted I just couldn’t cope with leaving the house. Sometimes just talking to people takes so much concentration I’m too exhausted to do anything else.

texture wise it’s mainly fabrics there are a lot I can’t wear I mainly stick to cotton and more natural blends but not wool. Some of this is related to the sounds they make as well as the feel. I can’t sleep if I don’t have a heavy quilt or blanket on even in summer although I do feel the heat so a bit of a catch 22 sometimes. 

After reading all the posts on here I’m leaning towards pushing for a diagnosis. If it turns out I’m not autistic I’m pretty sure something else must be wrong and I’m very aware of how poor mental health services are in my area as some of my friends have struggled for help.

Sorry if my previous post was a bit me focused rather than a reply, I meant to say things agreeing with you and ended up using it as an exercise to order my thoughts before next week. Anyways that being said I think I get exactly what you mean about change, it always bothers me when things are changed like item locations in shops, especially if it messes with things to the point that it becomes necessary to go and ask someone where things are now. I also get what you mean about knowing what to say in social situations as I tend to find that it takes so much effort to keep track of all the things people expect such as remembering to try and look people in the eye and do all the small talk things (I once described eye contact to a counsellor as like balancing on something extremely unstable and it being an indescribably strong urge to just stop and rest on solid ground - they didn't understand what I meant). Social contact can be exhausting. The sensitivity thing is interesting too as I have always had trouble with the feel of certain fabric textures or the texture of things like baked beans or mashed potato, and sound has always been a thing for me but like I said in my first reply I didn't understand that not everyone feels that way. Do you mind if I ask what kind of sounds bother you out of interest as I seem to have a bit of a complex relationship with sound, some things like noisy environments are just draining but I find a lot of sudden discordant noises to be quite disturbing, such as the sudden banging rattling crashing of one of those supermarket stock trolley cage things rumbling by. At the same time as that I find myself drawn to some particularly discordant synth music as I find it almost thrilling to listen to such things when I am in control and in private. 

I hope you find enough feedback here to satisfy yourself either way.

Hi Bumblebee, what you have said makes a lot of sense. In fact, you are describing exactly how I have felt for a very long time. It took me many years to get the courage to ask. And I think this is something that does take time to consider, as I thought once diagnosed, you can't be undiagnosed. I have the same problems with change, social situations, and sensory issues. And I feel the same way as you about applying for benefits and peace of mind. It's nice to meet someone who shares the same feelings. After years of wondering and worrying, I did ask for an assessment as I finally felt "ready" to know, and wanted an answer. 

I'm going to be kicking off my attempt to get a formal diagnosis next Wednesday morning when I see my GP. I've been treated for generalised anxiety for getting on for 11 or 12 years now with the usual anti-depressants and a couple of courses of CBT but never been quite happy with that diagnosis. I've lived in this pattern of feeling largely fine all the while I'm firmly in my comfort zone doing the same routine at home for weeks on end to the point that I start to feel guilty and like some kind of a fraud for being on ESA. At that point I usually push myself to do try and find work by asking for help to do so from my adviser at the jobcenter or similar, and for a little while everything goes relatively well; I browse for potential jobs, I email off applications and while I start to feel nervous I still feel I can cope. Then comes the stage when someone either responds or I get pushed to phone places to chase up on potential opportunities and this is where the wheels start to come off for me but I push on because I just can't find the words to explain to the adviser or even myself WHY its so uncomfortable to phone strangers out of the blue or why the idea of going for an interview is so terrifying. So, I meekly say yes and do my best to look like I'm getting on ok. I made it as far as practising interview technique with an adviser from the Shaw Trust last time last summer before I couldn't keep the tears out of my eyes and had to apologise and leave. I still remember clearly the rest of that morning as it scared the hell out of me because I didn't understand why I felt like I did. I've always had sensitive hearing and been one of those people that can't tune out background noise and finds bright light uncomfortable but I had no idea that things weren't this way for everyone else for the simple reason that if I said something when younger and was given one of those "oh everyone dislikes blah blah blah" or "everyone finds x y or z difficult" throwaway comments in response I took it literally to mean that my experience was the default for want of a better way of putting it. But that morning I was so distressed and sunlight seemed painfully bright and even birds chirping seemed like they were shouting at me with hostile intent. I went and sat in a park under some trees for a while until I could function and eventually made my way onto a bus home where I burst into tears again for reasons I still can't explain. I did make it home alright and my GP told me I had had a panic attack and to keep trying but I couldn't help but fall back on my old comfortable routine at home and isolate myself again, its the only way I started to feel calm again.

Years ago right at the start of the period I was signed off sick with anxiety which started after I couldn't cope in my first job after Uni I was given counselling at my GPs surgery and the lady gave me some print outs she had found about aspergers and I could see some similarity with myself in what I read but since I applied a very black and white view in my comparison I wasn't convinced. I did mention it to the GP at the time but they didn't seem enthusiastic so I let it slide. It wasn't until I was talking to a good friend I had made playing world of warcraft and she explained in more depth that what I was going through sounded an awful lot like her experiences with ASD that I started to dig into reading up on peoples experiences and at the end of November everything just suddenly seemed to make sense to me about my whole life.

I've always had some difficulties socially, in primary school I was very easily led by the other kids for their own amusement and I have found some of my school reports from back then describing how I was either too quiet or too chatty, fixated on certain subjects and at times other children had complained to the teacher that I was "too silly". I also found references dating back to when I was 8 or 9 about me still reversing my letters and complaints from the teacher that my creative writing exercises were "marred by nonsensical passages" - I even have a vague recollection that I was pulled out for some kind of special lessons but I can't recall the specifics and it didn't go on long enough for my parents to know much about it either when I asked them. I had trouble going from primary to secondary as I was sent to the local grammar but developed irritable bowel and missed so much time that they transferred me to the local secondary school that many of my friends were at. I also have memories of being picked on in my teenage years for having a monotonous voice, a teacher ridiculing me in the sixth form for walking like a robot with my arms rigid at my sides, and it took me two attempts to actually make it to university with the first attempt ending after a week in a panic. 

Believe it or not despite all this I simply though I was to blame and was somehow bad at coping with what everyone had to experience until I read my first personal account of what it is like to live with ASD and a lightbulb went on. I think for me the value in getting a diagnosis would be that I could maybe finally understand that its not my fault for struggling to cope and maybe even let go of some of the self loathing that inevitably builds up over the years of self blame. Until it gets confirmed by a professional I will also not be sure, not feel quite right in my new found understanding as I HATE being in a grey area. Its very important to me to have a concrete understanding of where I stand and what the rules are to find any kind of comfort in any situation. Sorry for the wall of text but I thought some background might help explain why I find the idea of finally having a reason why and maybe even a group I fit into so appealing

My current job is different to the one I was in when I was diagnosed. Before I was diagnosed I faced many issues, which I could probably write an essay about but I'm not going to, so basically I was bullied, excluded, isolated, prevented from gaining opportunities, development or advancement, discriminated against, etc. Of course there was no proof but it was made perfectly clear to me in terms of how I was treated and the sorts of things that were said to me in private situations. When I was diagnosed, it had no impact on me and my job because it was already an extremely toxic environment. It was already made clear to me what they thought of me, so I saw no point in disclosing anything when I was diagnosed. Shortly after they had literally taken everything from me except my ability to walk out so that's what I did and I don't regret the decision I made.

A few months later I got my next job, which I'm still in, and I disclosed everything from the start. They were extremely understanding and supportive but that's not because of my diagnosis or the disclosure, but because they were very nice, compassionate, considerate, kind people. I'm sure they would have been that way no matter what sort of person I was as long as I was a decent enough person who could do the job.

As for what impact my diagnosis had on my life, I'd say the only things that made a difference were the fact that I was more open about my issues (which might not specifically have been related to my diagnosis as when I quit the job I was in shortly after diagnosis it was like a heavy weight had been lifted from me, which made me feel like there was no point hiding things or not being myself in moving forward in life), the fact that I got access to services that could help me get my next job due to access to funding and support, which both helped me find my next job due to signposting me to a volunteering site where the company were advertising and because I was granted funding for part time minimum wage work for 6 months, which the company then took me on with the same employment terms, and also joining a local NAS social group where meeting people like me and talking to them was very helpful.

My family seemed to think my diagnosis would somehow change my life dramatically but I had already gone through my own psychological and emotional journey to the point that when it was raised that I might have autism and that I should seek diagnosis, it really made no difference to me. I thought the symptoms described were an accurate reflection of my own and I just thought to myself "Well, whatever, I am who I am" so to speak. So, basically I had already come to terms with being different and accepting myself for it, which was a big hurdle, so the diagnosis was just attaching a label to it rather than anything else, because I had already been through my own process.

Thank you I do think it would help me stop questioning if this is the reason I often feel I don’t fit in with other people. Good point windscale I hadn’t really thought about it that way if I’m autisic then diagnosis is not going to change that just confirm my suspicions

excellent post, Windscale!

My feelings are pretty much the same - I got diagnosed for ME to help ME understand ME, but having a confirmed diagnosis can also help others to help/understand me. I have disclosed to a small number of people at work, including the boss and everyone has been incredibly supportive.

But to offer an alternative, a diagnosis doesn't change anything - if you are diagnosed as having some level of ASD, then you are just the same as you were before.  What you do have however is an independently confirmed explanation for why you may have been having the difficulties you have. Once you know what a problem is, then you have a better position from where to work out what you might want to do about it to improve things.

I agree you probably want to think very carefully about who you disclose to, but in my case disclosing to work has been relatively helpful.

Hi Bumblenee. I have a slightly negative view.

Diagnosis is only really useful for your own peace of mind - do not expect any support afterwards coming to terms with it - you're pretty much diagnosed and then cut loose to sort it all out on your own.

If you work, telling your manager or colleagues can mean career suicide as you are suddenly seen as unreliable and faulty. Support in the workplace is usually patchy and inconsistent. What they agree and do one day goes out the window with a change of management or if there's a rush on or they are looking to cut costs. Also, colleagues can whisper behind your back and undermine your position.

If you are diagnosed, think very carefully about who you tell.

Family can be horrible to you too.

Hi Bumblebee I am in a very similar situation to you in that I am mid 30s and strongly suspect i have AS. I also suffer from anxiety and struggle with change. Layout of shops is a good example (and even for example when the same blusher which ive worn since age 16 suddenly changed. I went into panic mode haha).

I am in 2 minds about diagnosis. Yes it would give me piece of mind but i am concerned about work. My current role colleaguws and managers are very understanding but i dont know how it would be perceived at other places if i went for a job elsewhere and if you have to declare it. I hide it all very well so no-one would know anyway. At the moment im content with self-recognition.

So il be intetested to read any replies.