Does diagnosis mean quicker access to help if needed?

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moarjin
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26 Nov 2017, 4:56 am

First off, hello.
I'm a 42 year old father of 4. I've never been any good at staying in employment, so my partner works full-time, while I'm a house husband, looking after the kids and stuff.
I also have a part-time job, being a PA for an Autistic adult who's 21 (which is relevant. I'll get to it in a moment).

Back story. (Skip this part if you like)

Fairly typical Aspie childhood it seems. Not fitting in in adolescence. Trying too hard as a young adult. Not understanding social situations. Driving people away by not reading situations. Not realising when I'm being ridiculed till it's too late. Etc.

All of this was fairly unknown to myself. I seemed to be oblivious to how I was till about 25, when I decided to make a tactical withdraw, and stop trying to be everyone's friend. About the same time, my first marriage failed, which threw me into depression. We had a child who was about 3. She left him with me, which was good, as he was my reason to keep going.
Met my current partner at about 29. We quickly had 2 kids. This was when I completely changed. I decided to basically cut out pretty much all social interactions unless they were necessary. I had no friends, was struggling to work, but kept going by willpower and great acting. I decided that the missis and kids were all I needed, other humans didn't matter (still think this). We also had another child (not planned).
At some point, a few years ago, we switched roles. My partner's career was taking off, while mine was in decline. Leaving me in charge of 3 kids and the house (my eldest son has got his own place now).

Back story over.

Didn't know much about Asperger's until I started my part-time job.
The lad I look after is a fairly high functioning autistic 21 year old. I've known his mother for about 25 years, she's actually my ex-wife's older sister. She was struggling to find a PA for her son, so I volunteered. I needed a part-time job and thought it would be ideal, I've known the lad since he was born, and I can fit it around the school runs.

Anyway, she also has 2 other kids, both of them have Asperger's. We were talking about things when she suggested I take the AQ test "out of interest". You can guess the outcome.

She admitted that she'd worked out I was probably an Aspie a long, long, time ago. I just needed a push in the right direction.

I've spent the last 13 months coming to terms with it. My life made sense now, except the "Normie" part of me was struggling to accept it. I've been acting for so long, I'm not sure what parts of me are real, and what parts are an act anymore.

Even though I've done loads of tests, with pretty conclusive results, I'm still only about 90% there with accepting it. There's still 42 years worth of "Normie" telling me I'm being selfish, trying to be a special snow flake.

Back to the original subject!! !

I’ve been struggling with stress lately. In fact, I’ve noticed that as I get older, I’m finding stuff more difficult. Stress seems to build up. Sometimes I find it hard to form sentences. I’ve become extremely hypersensitive to sound, not loud noise per-se, but lots of noises that are hard to keep track of, like a room full of separate conversations, it just feels like excruciating pressure in my head. I’ve always had thought loops and a poor working memory, but they seem to be getting worse. I actually thought looped myself into a panic attack the other day!

So, I’m toying with the idea of a formal diagnosis. The thoughts behind this are twofold.
1. It would finally crush any doubts.
2. It may allow me to get medical help quicker if I start to 'lose it’ at any point.
In your collective experience, is it worth it?
I’ve read reports of adults getting diagnosed and then getting zero support anyway. I’ve read reports of diagnosis ruining their careers or marriages. I’ve read reports of people personally struggling to come to terms with diagnosis.

Are there any advantages (in terms of getting medical help if/when required) as an adult in the UK? Is it worth it? What’s the process and is it potentially disruptive (I’m not sure how my partner would take it)?
Can it be held against me with regards to my caring for my kids!?

(Incidentally, I’ll post my test results to get your opinions if you like.)

.

EDIT: Just clarified one point.


_________________
AQ: 42
EQ-60: 3
Aspie: 147
NT: 54
RAADS-R: 186


Last edited by moarjin on 26 Nov 2017, 6:36 am, edited 1 time in total.

moarjin
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26 Nov 2017, 5:38 am

Just to add the results of the tests I've taken so far.

AQ Test: 42 out of 50
EQ-60: 3 out of 80
RAADS-R: 186 average
Cam F/V Battery: 68% in 18.1 seconds
Aspie Quiz. Aspie: 147 out of 200
Aspie Quiz NT: 54 out of 200

Other clues. I have a huge problem with recognising emotion (my own and other people's). I seem to completely lack empathy, although I have learned the ability to sympathise. I cannot handle any emotional stress with my partner- the tiniest thing can cause an instant adrenaline fuelled meltdown. I can get so deep into hyperfocus that it's like a drug. I stim with my hands a lot (though hidden for years). I am Asexual, I can 'DO' it obviously (I have 4 kids), but never really enjoyed it, and don't ever need it (I put this down to lack of empathy and never connecting to a partner). Have big trouble in social situations still. I can act my way through in short bursts, but I can't sustain any social activity without high amounts of stress.
I could list loads of fairly typical Aspie traits, but you guys know about these anyway :wink:


_________________
AQ: 42
EQ-60: 3
Aspie: 147
NT: 54
RAADS-R: 186


harry12345
Deinonychus
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26 Nov 2017, 7:10 am

Are you in the UK?



moarjin
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26 Nov 2017, 7:50 am

Yep. I'm in the UK.


_________________
AQ: 42
EQ-60: 3
Aspie: 147
NT: 54
RAADS-R: 186


harry12345
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26 Nov 2017, 10:29 am

From going to my GP with my work OHA supplied report detailing his suspicions to getting diagnosed took about 6 months. It can take longer (a lot longer) depending on where you are in the UK, but at least it should be free of charge. I went to about three appointments all told - all a couple of hours long. Ask your GP where you are being referred too as well, so you can chase things up if you need to.

Follow up counselling to my diagnosis was a further 6 months later, though I deferred the appointments to the New Year because my work place is always busy in the run up to Christmas. Not sure if this is available everywhere.

I have a social group that I go to twice a month which has been great too, but again not every area has them.

A formal diagnosis will not "finally crush any doubts", at least in the short term. If anything you can have more doubts after the diagnosis than before! It can take a long time to process the fallout of being diagnosed and what it means. Longer term - maybe 12-18-24+ months down the line - then yes I feel it has been a great help to me knowing why I am the way I am.

I also tried to avoid reading too much about Asperger's before my assessment and just tried to be myself at all times whilst being assessed. Afterwards I got loads of books and that helped enormously.

I am not sure about the quicker medical help. I do know that NAS supply Autism Notification cards that can be carried in a wallet. I have one in my wallet in case it is needed in an emergency as it may help to de-escalate a situation.

Stress - well..... that is what lead me to be off work and in the end got me to the right places and seeing the right people.......

Quote:
I’ve been struggling with stress lately. In fact, I’ve noticed that as I get older, I’m finding stuff more difficult. Stress seems to build up. Sometimes I find it hard to form sentences. I’ve become extremely hypersensitive to sound, not loud noise per-se, but lots of noises that are hard to keep track of, like a room full of separate conversations, it just feels like excruciating pressure in my head. I’ve always had thought loops and a poor working memory, but they seem to be getting worse. I actually thought looped myself into a panic attack the other day!


I had all of this ^^^.

I'd say write down as many/all of your problems, issues and quirks (bullet points will do). The more info you can jot down the better. Take that with you to any appointments.

Hope the above helps...



moarjin
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26 Nov 2017, 11:35 am

Thanks for the reply.

I'm getting concerned about my ability to keep it together at times. I mean, I'm fine right now, but it is harder as I age, and I don't want to get to the stage where I might need help, but have nothing in place. I feel a diagnosis may alter that scenario.

There are still doubts though. I suppose the main reason I'm incredibly cautious, is my family.
This has been a bit of a private battle in my head for the last 13 months. I've briefly talked about it with my partner, and even kinda floated the idea of getting a diagnosis with her, but she wasn't entirely impressed. Not totally against it, but not enthusiastic either. She just doesn't see the point, as nothing would change. And I'm not keen on justifying it by divulging just how hard I'm finding it at times.
As I eluded, I can't handle emotional stress in my relationship, and am fearful of rocking the boat.

Also, as I'm the main carer for my kids, I'm worried that social services, or some such other government body could get involved. And what happens if we ever split up. Could a diagnosis be used against me, legally.

I'm just petrified of screwing everything up, just for a piece of paper.
I'm 50/50 at the moment.


_________________
AQ: 42
EQ-60: 3
Aspie: 147
NT: 54
RAADS-R: 186


harry12345
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26 Nov 2017, 3:04 pm

Not having kids myself I can't help much with that part.

But I do know that getting a diagnosis on Monday will NOT result in Social Services turning up on Tuesday to take the kids away.

I can't tell you what to do, only what I did. Maybe that will help.

I was getting stressed at work (due to the environment, having to work overtime and having too many bosses), I was getting stressed at home because my free time was being constantly eroded due to problems with family situations and we'd had two bereavements in a short space of time and we were in the middle of a major building project at home.

I got four pieces of paper and wrote down all the problems I had:
1) for work
2) for work colleagues
3) for home
4) why I couldn't do my own things etc.

I sat down with my parents (who I still live with at 42) and info dumped the whole lot on them. I think I surprised them with how much I was being bothered. I know I was surprised.

At work I then info dumped the same on them too (but only because I was off sick at the time - it might not be wise to do that if you are not off sick...... 8O)

Slowly but surely I've managed to make changes to make things less stressful. Dealing with less people, doing a less stressful job, having people fore warn me of changes etc, etc. Having a diagnosis has helped in the sense that work need (by law) to be more careful in how far they try to push me; for instance I got took off shift work.

Maybe write down the pros and cons of getting assessed?



ASPartOfMe
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26 Nov 2017, 7:10 pm

moarjin wrote:
First off, hello.
It would finally crush any doubts.



Hello, and welcome to wrong planet.

That validation might be even more important to you then you think even if you do not receive any help.

If you go for the diagnosis it is very important to find a clinician that understands how autism presents in adults.


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doofy
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26 Nov 2017, 8:51 pm

I'm in the UK, got diagnosed about 5 yrs ago. Incredibly useful in terms of validation of self. Totally useless in terms of getting support. My diagnostician assured me she would set up a client centred care plan for me. Nada. Zilch.

Mind you, I live in the middle of nowhere; don't know if it's different in cities.

I keep meeting health professionals who tell me their job is to ensure I'm getting the support I need. I don't meet any who give me that support.

I've just hooked up with a useless start up outfit called Integrated Autism Support. On paper they look very good, and my initial meetings with them were encouraging. But it seems like all they really want to do is bully me into doing more housework. I'm meeting with one of them in a few days, and I'll probably tell her to stick it.

They've offered me an assessment for post diagnostic counselling. Forty miles away. I would really really like post diagnostic counselling but 40 miles? And they seem such a cowboy outfit, I'm guessing that the counselling would be about how to improve my social skills. Well, I've been trying to improve my social skills for 60 yrs, and I've had enough of it. No more. So they'd just end up saying I was resistant, or in denial, or some such crap.

Summary: diagnosis can be very useful in terms of validation of self, but don't expect any support afterwards. And I'm still finding it traumatic: reviewing my life and wondering how it could've been different if I'd got a dx when i was young enough for it to have made a difference.



artfulldodger
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26 Nov 2017, 9:15 pm

I have about the same issues as you do, same basic childhood struggles and as an adult. However I am formally diagnosed(at age 39, I am 44 now). Took me about 6 months to accept and then another year or so to readjust to what is the real me and what was my "mask" that I put on to try and be normal. That mask was very tiring to keep up and was the source of many violent meltdowns. I have struggled my whole life to keep a job for any length of time. When I applied with the large auto factory in town, I was upfront right from the start that I am autistic, what my strengths and weakness are. I was hired, put on the day shift to avoid a total upset to my routine, I work driving forklifts and tuggers that take parts from the dock to the assembly line. Once and awhile I have to work on the assembly line when they are short on people, but they are careful what station I am given, that its not to stressful, fast paced or needing good depth perception(which I totaly lack). I cannot stand having ear plugs in and the shop is quite noisy. Hearing protection isnt required everywhere, but i need it everywhere. Its a union shop with the typical issues between union and management. I was getting blown off getting a pair of ear muff style hearing protection to allow me to cope with the noise. Till a co worker who noticed right away that i am on the spectrum(so is her son) and got the union steward involved. I had my muffs in under an hour! I live in them all day and my anxiety is so much lower now. I need the support to be able to work, and being diagnosed gives me protection of the ADA act here in the USA that says they cannot discriminate. I am considered disabled legaly here in the USA. I qualify for vocational rehab services if this job doesn't work out(so far so good thankfully!). I almost qualify to work in the local sheltered workshop, but the wages there are way to low for what our family needs to stay up on bills. While I am not in the UK, I would get the diagnosis, even if you never need to use it. Its there and your anxiety will be less due to that. AD


_________________
AQ score 43
RAADS-R 221
Your Aspie score: 153 of 200
Your neurotypical (non-autistic) score: 59 of 200
You are very likely an Aspie


moarjin
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27 Nov 2017, 12:59 am

artfulldodger wrote:
Took me about 6 months to accept and then another year or so to readjust to what is the real me and what was my "mask" that I put on to try and be normal. That mask was very tiring to keep up and was the source of many violent meltdowns.


That's exactly why I think I've been struggling as I get older! The act, or mask as you call it, takes so much effort to maintain, it's starting to cause an enormous amount of stress, and even the odd meltdown.

Like you, I've been trying to figure out what the real me is! I've spent most of my adult life completely faking it, the line between real me and fake me is blurred. I first did an AQ test 13 months ago, but I've only really started to accept Asperger's recently, and I've spent probably the last 2 months, slowly chipping away at this mask, trying to unravel what's real and fake.

I've found that lowering the mask improves my mood, and lowers my stress levels, but it also removes a lot of my coping mechanisms. I've had several anxiety attacks which I put down to letting my guard down. I need to develop new strategies to cope when these things creep up on me.

So, I'm starting to lean more towards getting that diagnosis, but does anyone have advice regarding how it could affect my family :?:


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AQ: 42
EQ-60: 3
Aspie: 147
NT: 54
RAADS-R: 186


artfulldodger
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28 Nov 2017, 9:37 pm

New coping plans will come with time and come easier if you get diagnosed and get help from a professional that deals with autism in adults. Stuff that works with kids isn't always the best approach with adults that have never been diagnosed or treated. Finding that therapist or whatever they are deemed in the UK can be difficult. But I feel its worth the work. I am who I am and I shouldn't have to put on a mask or act to be accepted. Like you said, its alot of work and to much work leads to stress and meltdowns. My meltdowns used be very violent, throwing stuff, breaking stuff. I haven't had one of those in a very long time. I still have meltdowns, I still cannot always ward them off, but I can minimize them. Shutdowns are not fun either, and I started having more of those once I started dealing with my emotions and dropping the mask. But, my therapist and I worked thru them, she helped me process them and learn how to help them not happen as much. They are the other reason I wear my autism medical bracelet, as they can and do happen in public places like a store. And if I cannot speak/respond, it allows them to know they are dealing with someone who is on the spectrum. Mike, aka Artfull Dodger


_________________
AQ score 43
RAADS-R 221
Your Aspie score: 153 of 200
Your neurotypical (non-autistic) score: 59 of 200
You are very likely an Aspie