Support thread - adults on the Autistic Spectrum :)

[fuzzpig]

Hello!

I've seen a lot of MNers mention being on the Spectrum, whether diagnosed or not. I thought we could use a long-running place to chat, share coping strategies and basically to know there are other people like ourselves, who won't judge us for being different.

I'm new to all this myself - only realised there was a possible name for How I Am a couple of weeks ago (thanks to MN)! Now I have a referral to an adult ASD specialist, to see if I have Aspergers. It's all happened very quickly.

Enough waffle from me (for now anyway...) but I hope other people will come along and find this thread useful. :)

[MarynotBeSarcastic]

Apologies for "disappearing", I was going to find out the name of that AD medication, which I'll still do, then I'll come back and let you know and catch up!

My 10yo DS is Pokemon mad. Also Bakugan as well.

I know its a kids programme, but for those of you who love visual humour, have you discovered the Ooglies? I love it!

[SystemofaDowny]

I haven't seen the Ooglies. I've been told I have a very strange sense of humour because I like things like Noel Fielding's Luxury Comedy.

[TheLightPassenger]

yes, my DS has quite the collection of Bakugan too. If it emanates from Japan, DS is likely to be attracted to it. Not erm entirely like me then

I am not really visual at all, that's the big difference between me and DS, he is v visually oriented. I do rather like Gigglebiz, tho!

[fuzzpig]

The wedding was amazing! I am really happy it went so well. The only difficult bit was being on a table with people I didn't know. They had a ceilidh which was much better than normal dancing as they tell you what to do! I felt I was among many like minded people - geeky and although not into exactly the same things, we had a similar mindset. I wish I'd got to know them earlier.

I have agreed to host a small party based on a shared interest - Famous Five! That seems achievable even though I don't know all the guests that well.

I have come to accept that I get nervous about big events like this. Bizarrely I was not nervous about my own wedding because it was small. I have another wedding to go to in June so I'll make sure I get travel and accommodation organised much earlier. Now that I know why I feel like this (ie Aspergers = struggling with unpredictability), I can go easier on myself and actually admit it.

[PermanentlyOnEdge]

devil - yes, the one good "mummy" friend I have made locally is foreign, and appreciates my directness compared to most Brits. Re:coping situation - I seem to be v marmite - I come over as nervy, intense/serious but genuine. I feel as if I'm boring and have no personality at times, as it's hard for me to open up. So most people run a mile, but others come to appreciate my intelligence. I can't let my guard down easily to show others my sense of humour. I find iv difficult to manage the casual friend/parents at school gate type relationship. I can be v withdrawn tho if not feeling confident so some of this is my fault tbh

I read this thinking 'hang on, how have you climbed inside my head'? That is a perfect description of me. I think I am glad to have found this thread.

I have just started stumbling around info about ASD as my DS's teacher said at parents evening last week that he was showing 'spectrum markers', which left DP and me a bit shocked. So I started reading websites, and all I've been thinking is 'but isn't this me...?'

So I did the AS test, and got 32.
Did the Aspie test and got 124 for Aspie, 104 for NT.

Now just very unsure about what to do next, for DS, who's only 4, and for me.

Though frankly, if someone said, 'you've got aspergers', the relief would be astounding! Finally something would make sense of my WHOLE LIFE! And I could stop feeling like such a horrible person who doesn't work properly and is so horribly self-absorbed.

Perhaps if this had been dx'd as a child, my depression and 12 years of therapy and psychiactric care could have been avoided? But why, when I've been seen by so many different MH professionals, in so many different roles, hasn't somebody noticed?? Am I barking up the wrong tree?

[MarynotBeSarcastic]

I like Noel Fielding too, think he is brilliant on Never Mind the Buzzcocks! Not come across Luxury Comedy.

PermanentlyonEdge, the next stage for your son would probably for the school to refer him, either to an Education Psychologist or a Paediatrician, or you can take him to the GP. My son was "picked up" at the age of 3, but nothing was done until he went to school, when it was raised again there, when he was 5. The school have put in supporting mechanisms round him, and he is doing really well, although we do have occasional difficulties as he adjusts to changes around him. Because I understand him so well, I've been able to work with the school to explain "how it is" for an Aspie, and this has helped the school too.

Not sure how old you are, but for a long time Asperger Syndrome was thought to be something that boys have, if recognised in girls it was very rare and only the extreme cases were recognised. Now the professionals are really starting to wake up to the fact that not only do girls have it too, but we present differently, so they should be looking for different markers.

Glad the wedding went well, fuzzpig! :) I love going to Ceilidhs and barn dances when I was younger!

[SystemofaDowny]

I think that too- if I really do have AS, how did nobody notice before? Maybe its because I don't talk to people about most things. I can honestly say that there is not a single person who knows who I really I am. That is why I prefer to be on my own most of the time, so I can just be myself and not have to pretend as it is so exhausting. So I guess its probably my own fault nobody has noticed before.

[fuzzpig]

Though frankly, if someone said, 'you've got aspergers', the relief would be astounding! Finally something would make sense of my WHOLE LIFE! And I could stop feeling like such a horrible person who doesn't work properly and is so horribly self-absorbed.

Perhaps if this had been dx'd as a child, my depression and 12 years of therapy and psychiactric care could have been avoided? But why, when I've been seen by so many different MH professionals, in so many different roles, hasn't somebody noticed?? Am I barking up the wrong tree?

Ok now you've climbed into my head!

And I don't think it is our fault that nobody noticed, System. I think a big part of the problem is that you develop coping mechanisms and because it is on the high functioning end of the spectrum you can get by as 'quirky' or shy. And of course awareness has only been recent in a mainstream way - the usual idea of autism is so totally different from how we are.

That said I do still feel resentful that not one person ever flagged it up. I'm even wondering if somebody did but my parents ignored it.

[SystemofaDowny]

I do still kind of blame myself though. If I didn't pretend to be normal or avoid people that started to guess I wasn't all this time maybe my life wouldn't be so bad as it is now. I thought it was my fault that I wasn't like other people. It was only a few weeks ago that I read about Aspergers online and started to think maybe that is the reason I am this way.

I know it wasn't even known about when I was a child (early 80s) but I know every parents evening my family were told about how i didn't ever speak at school. This would not be considered normal now but I don't think they were bothered because I was reading the junior school book scheme by age 5 and could do my older sister's ( at secondary school)maths homework by 7.

This weekend my mum was comparing me to my own DC (who were playing very a very noisy game) she said I was so quiet at that age (5-6), I never used to talk while playing, didn't create stories with my toys just liked setting them up in a scene and used to sit for hours doing colouring books but didn't like anyone looking at the pictures or interrupting me. She also reminded me about how I was obsessed with flags when i was small. For christmas when I was 6 I got a globe and I learnt all of the countries, capital cities and their flags. I remember this was the first time I started writing lists- of all the countries in the world, in alphabetical order. I really wasn't normal as a child either.

[fuzzpig]

Sounds like we were pretty similar as kids!

And it's not your fault you 'acted normal' - you had to. I had to. It was that, or being bullied even more.

I think it's because with the intelligence that AS usually brings, it's easy to see how you should be acting, and force yourself into that mould. That's what I feel I did, anyway. That's why a lot of the AS symptoms are playing out in my own mind (as opposed to being obvious to others) and driving me crazy. For instance the repetitions and lists are all in my head, it's buzzing constantly, but it isn't out loud so nobody knows.

[SystemofaDowny]

So how can you convince other people if you are so good at hiding it? I feel like I'm going crazy roght now, but if I said or did half the stuff thats in my head, i would get locked up or lose my kids. Also other people have got used to me like I am now, what if they think I'm lying when I try to explain?

[fuzzpig]

I'm not sure really, but I think I - and you, from what you've said about your doctor appointments - have enough 'visible' symptoms to show that you aren't making it up! Things like eye contact and interrupting can't be hidden.

I guess you just have to give as much detail as possible about the "in your head" stuff. From what I read, it is well understood that adults with AS have often gone without a dx specifically because they get good at hiding things and acting normal - so a specialist would understand that. I think that's why Aspies are prone to depression too, the pressure of trying to act normal puts quite a strain on you, and knowing that you aren't able to function like everyone else doesn't exactly do wonders for your self esteem.

[TheLightPassenger]

I think it's too tempting for parents (and of course there was a lot, lot less awareness of Aspergers ten or twenty years ago) to see the social problems as being part and parcel of being an academic overachiever, as somehow a "gifted" personality. Sweeping over generalisation, but girls tend to not get diagnosed, or misdiagnosed with an eating disorder, as they tend to be less aggressive and more compliant. A cash and knowledge strapped system is more likely to react to challengingly behaved children than withdrawn passive ones IME.

SystemofaDowny - I used to memorize capitals etc, but that was as a young teen, so rather later on than you. I guess it's about the appeal of systems, of something that is consistent, predictable and non-scary, unlike people can be!

[fuzzpig]

Yes I agree, so much importance is placed on academic achievement that people often don't even consider that the clever quiet ones could have a disability.

[ThePinkPussycat]

I am horribly intelligent, but think I have AS and that DF does too. I am now nearly 60, did well academically but have had terrible trouble keeping a job. I have tried twice to do a PhD but find it very hard to be self-directed or to get started unless I have a deadline or am in obsessive mode - then I can't stop. I believe I have ADD as well as AS. Suffered from depression most of my life, ended up with a diagnosis of bi-polar, but psychiatrist now thinks I could be right about myself. Since I started taking this (self) diagnosis into account, I am better at managing myself. But it takes energy and effort, and I need a fair amount of down-time.

There is a thread on Relationships about distinguishing AS from emotional abuse, at least that's what it started out as, but it has developed in a quite interesting way to be about family dynamics where AS is involved, if anyone would care to take a look? I have posted a fair bit on there myself.

[SystemofaDowny]

I think I can understand that. I've been thinking a lot about the dyslexia assessment I had last week today, wonderering if things would have been different if I did that test 16 years ago instead. I might of stayed at school if they had understood me then, instead of wasting half my life and still struggling to get my degree years later.

Also what does an educational psychologist do? I have only heard of them in relation to children before and not really sure why they wanted me to see one.

[fuzzpig]

I always thought EPs were for children too but maybe as they relate to education they are relevant at all levels.

It is very sad isn't it, thinking back on all the wasted potential :( still... Just have to move forwards from here I suppose (easier said than done!)

I had noticed the AS/EA debate thread on active, but I didn't look as it was just when I'd realised about myself and I thought it might be upsetting at a very emotional time. But if it's ok then I will take a look.

[ThePinkPussycat]

The thread is a little troubling at the beginning, but then settles down and is quite constructive :)

[PermanentlyOnEdge]

I was definitely a withdrawn passive over-achiever, and I buried myself in my work, until about 16. I think things were easy to hide as I was in a small girls boarding school in the middle of nowhere, so no boys, no independent social life and massive amounts of rules and routines for 24/7 meant I could hide my oddity. It all fell apart in the sixth form when drugs and boys crept in on the sly, and I couldn't cope as all the boundaries and expectations shifted and got threatening. And at Uni I sank like a stone and lost even my academic lifelines. I feel I've been picking up the pieces, or failing to, ever since.

I can remember my mum mentioning the autistic spectrum when I was early twenties, saying she used to wonder if I was on it when I was small. She worked with adults with learning difficulties, so was unusually clued up for someone in the 1970's. I wish she had followed up on that! Instead I grew up feeling something was terribly wrong with me, that I just didn't 'get' how being friends worked, and just accepted the 'difficult' label my parents gave me.

I so agree that I use my intelligence to mask all my confusion, I still do. There's a voice inside doing a running commentary, going stuff like 'that didn't sound natural, lighten up', 'be quiet now, you're boring them', 'remember to ask about their DC, they asked about yours', 'she said she was poorly, ask if she's better' etc etc and it's just exhausting. I manage for a while, then every few weeks I get overwhelmed and crash and burn, and then hide at home for a while till I feel 'strong' again.

I'm going on a bit. I feel like I'm looking at all my life through this new filter and seeing it all in a way that finally adds up. Does anyone on here have experience of getting a dx as an adult? Is it worth it? As for DS, the school want to 'wait and see' for the time being. He's still so small, and frankly, it could be just that he is a May birthday and hasn't settled well. Wish I knew what was right to do.

[PermanentlyOnEdge]

pinkpussycat thanks for pointing out the other thread. I've just spent all morning reading it. I picked up on some very odd things on the way through, one being about how hard I find it to share a bed with DP, it's like torture, with every movement and breathing noise he makes waking me and winding me up till I explode at him. He sleeps most nights on the sofa.

But it made me think how hard I am to live with. But also how hard he can be. He is an emotional void, just nothing there, no reactions, no sense of connection or of team work, which I desperately want despite my clumsy and stunted ways of trying to initiate it. And then his anger if he feels overloaded, completely disproportionate and horrible for the children to witness. I'm starting to feel my DS's teacher has inadvertantly opened a whole can of worms about all of us. My DD who is only two had already struck me as being different somehow to the rest of us, there's a lightness and happiness to her in herself as a person that seems just missing in the rest of us. Maybe this whole spectrum thing is at the root of it for me, DP and DS. The other thread seemed to suggest AS people find each other. I am just full of questions right now.

[MarynotBeSarcastic]

If its any help, re: how will the Dr diagnose you if you keep things hidden, the Dr does see things which even you aren't aware of. What happened at my diagnosing appointment was that the Dr would say things like "did you know that when you make eye contact, you stare? Normally people would break eye contact occasionally before making contact again". Now I didn't know that, but from that point on, I couldn't help myself and would break eye contact with her occasionally. Then she would say (my DH was sitting behind me and to the left), "When your husband joined in the conversation, you didn't look round and include him", and my thought was "no, well I knew he was there", so she said "well people would generally look round at who was speaking". So from that point onwards I started doing that too.

Its how we learn and adapt to what we know that makes us able to survive.

[Dylthan]

Your Aspie score: 154 of 200
Your neurotypical (non-autistic) score: 41 of 200
You are very likely an Aspie

I got an official diagnosis of aspergers on the 29th of December. I went for a diagnosis because I was really hoping for some help and support but there is nothing in my area. :(

I work for the NHS and my psychiatrist recommended that I spoke to them for help so I got an appointment with occupational health who asked me three questions 1) am I able to do my job? 2) can I do my job well? 3) can I do it in a timely manner? As I answered yes to all three questions he said there is nothing they can do for me. I am very good at my job but I could do with help with the interactions between myself and my colleagues and some other things I find difficult.

I think if they all just knew about me and what the problems are that i face then things will be easier it's certainly worked out that way with my family but occupational health have advised me to keep it quite and so has my line manager. It feels like they think it is something I should be ashamed of but I'm not at all I'm finally proud of who I am it's taken me along time to feel like this.

[fuzzpig]

Why on earth should you keep it quiet? That to me seems hurtful and wrong. I could understand, I think, if you'd not been officially diagnosed.

It's ridiculous to keep it hidden - if it was a physical disability you wouldn't be able to!

I was planning to wait until dx to tell colleagues but I'm not sure I can wait that long - I want to tell a couple of people what's going on. My managers have said it's my decision.

[fuzzpig]

Finding this evening really difficult. Had to come back to work to cover an event.

My brain won't shut up. I hate days like this :(

[SystemofaDowny]

What is your brain saying? A few days ago my brain wouldn't stop saying Olly Bolly Dob Dob Tree. i even ended up saying it a few times. Luckily there was no one around to here me.