Please can someone talk to me about Autism and Asperger's Disorder.

[SystemofaDowny]

I am not new but this is the first time I have posted. I hope that I can get it right. I have read a lot of this forum and have seen that some people here have lots of information about Autism and Asperger's Disorder. I would really like to speak to a person about it. I am sorry if this is the wrong thing to do.

I am very sad right now and always have known I am different to other people. I do not know how to explain this or make anyone understand. I look the same on the outside but I am not the same inside but I try so hard. It is so difficult but I don't know what else to do. I have so many worries because I can't do the same work as other students in my class. Everything is more difficult for me. I had this same problem at school and at college. Everyone says I am too clever and should not have a problem but I do and it is so hard.

A college tutor told me I should be tested for Asperger's Disorder and get more help but I did not know how to do it and then I left that college. I did a test online and it scored me 43. My mother has laughed at me that i am autistic because I never played the same games as my brother and had strange hobbies and wasn't like the other girls in my class. Also she was the same when I stopped talking and eating at school and when I changed schools.

I do not know what to do. How will I know if this is true about me? What do I need to do, to make this better and so I can do the same as other people? I am so tired from struggling all the time but I don't know how to talk about it with people. I have no friends to talk to and I find it hard to talk to my tutor or my family. Please can someone here talk to me, I have tried to write this so people will understand me. I hope I have not upset anyone.

Oh system just saw your last post, I'm so sorry especially about your mum :(

I'm really sorry I'm going to bed now but I will be back tomorrow.

I am really scared too but maybe it's a good thing we are going through this at the same time. x

Hello SystemofaDowny, your description of yourself sounds just like me!
I have big problems with noise, being touched, bright lights, groups of people, focusing and understanding dynamics between people. I always had such a difficult time at school, work, parties (full of loud noises and lots of people acting strangely=hell) never understood WHY, just thought I had to work harder all the time because everyone else seemed to handle it just fine.

I recently got an Asperger diagnosis - it had gotten to the point that I was completely burnt out! It was a great thing, now I know why I've had such a hard time, that I can't help it, and instead can look for solutions that work for me.
It's like a big burden with lots of shame have ben lifted.

I wish you all the best and hope it works out for you!

CardgamesFTW, can I ask how you went about getting diagnosed? :)

I'm living abroad so maybe things are different here. First I met a GP because of my depression and exhaustion, then I was sent to a psychiatrist and finally I ended up on a specialist psychiatrist centra for people with different diagnosises because it was suspected I might have one. And there, I heard the criteria for Aspergers for the first time, found it true, and got the diagnosis.

Really wish I had heard about Aspergers sooner - I had only heard the stereotypes about low-functioning male aspies, which I didn't identify with. There really should be more info on how it manifests in "high-functioning" people and in women - we tend to act out less.

I agree, and because they (we?) get far too good at covering most of it up. Which I think is a massive factor in the depression - it is all internalised and acting 'normal' is exhausting.

I am impressed that a psychiatrist actually suspected you might have something. I have mostly heard of the sufferer being the one to research it and approach the doctor.

I have my GP appt in under an hour. Very scared. Will be back to update later.

I hope you're ok System x

I was diagnosed a couple of years ago, at the age of 42, a year after DS was. It helped me make sense of myself. For years I thought I had no friends because I was a bad person. Now I understand!

I strongly recommend hanging out on the website "Wrong Planet". It helped me make up my mind whether a diagnosis was right for me.

I went to see my GP when it became clear that I wasn't going to feel any better about myself until I was sure, otherwise it was a vague thing floating in the background. I was referred to a centre in Cambridge (ARC) for the diagnosis of adults, under the NHS and received a diagnosis that way.

I got the referral. I don't know if it was just luck that I had a really nice doctor (whom I've not met before) but it was actually easy. She was happy to refer me very early into the appt, and only wanted me to describe more symptoms so she could write them on the referral letter. I just gave her the list to keep instead (though I'm now panicking because I thought of more things so my list is incomplete :(). After reading it she said the referral was definitely worthwhile as it is quite likely I am on the spectrum.

We chose the centre at the hospital, as it specialises in adults. That is really scary, the thought of going back there. Terrifying.

But not quite as bad as the thought of telling my parents :(

Just butting in here - glad this thread really got going now.

Seen a few of you refer to things that are 'wrong' about you. Nothing is wrong about you, you're just differently wired.

I'm very happily married to a (partial) Aspie and he's a great guy. Not always easy to live with but neither am I and I'm not on the spectrum.

It really helped me to have a label because it stops me getting needlessy irritated about his quirks, like his obsession with facts, well his obsessions full stop . It helped me understand that for example after we've had people round for an evening he can't cope with the clear-up, he needs space NOW. He will clear up anything the next morning, it's not unwillingness. It's space or melt down. Oh the needless arguments we had over that in the past.

He has a very people focussed job so he needs to balance that with alone time at home. At the same time he prioritises ds so all is well.

You're fine the way you are. A diagnosis can be good if it helps you accept yourself x

fuzzpig then don't tell your parents. You are still you, just the way you are. Don't tell them or tell them much later when you are ready.

You are an adult and it is up to you who you share this with, if you share it at all.

I was thinking about telling my parents because apparently some assessments involve the parents to talk about childhood. That worries me anyway, as they weren't exactly 'on the ball' - as I said earlier they were obsessed with the fact I was extremely clever, nothing much else seemed to matter.

Anyway... thanks for your post madmouse (BTW I think I still may have you on FB, from a support thread ages ago? Keep calm and carry on?) - I think accepting myself will really help. DH is amazing and has already said that I should tell him if there's anything else he can do like getting less frustrated when I ask him to tell me something umpteen times!

It's so weird, though, suddenly realising there might be an explanation. For example I have always been angry at myself for not being able to play with my DCs (unless it's something with clear rules like a puzzle, reading or board game), in fact it's the only thing I got upset about in the appt today. I feel like a failure. But having AS would mean it isn't my fault.

fuzzpig, I never told my mum, and used my brother as the family member, as he is 10 years older than I am. He was happy to answer what questions he could about my childhood. I couldn't cope with the crass comments my mum was likely to make. (My dad died 15 years ago)

The assessment was really good as I found out so much about myself from the questions they asked. For example they would say "Did you realise that when you make eye contact, you stare? Most people would look away occasionally". Now when I was in my teens i'd learnt that not making eye contact meant people thought you were lying, so I always made sure I made eye contact. After she said that I couldn't help glancing away occasionally, just as she said. So I'd LEARNT!

system, my DS has a diganosis of ASD. He was diagnosed at 7 & is 12 now. I have found that there is alot of support to be had through organisations like the National Autistic Society and local Autistic groups too. Do some online searching & see what comes up in your area.

Also would add support to all the advice on here to go to your GP and get a diagnosis.

Sounds like you don't have a close relationship with your Mum, but is there anyone who could go with you to the GP or support you?

Does your mum know now though?

I do want them to know. I am angry at them for letting this happen, in a way, even though when I was a kid there wasn't as much awareness of autism. They did let me down in many ways - I was abused by mum's brother and nothing was done, tbh until learning more about AS I thought all these symptoms were because of that, or because of how I was brought up. It's only now I've realised it could go deeper than that.

Truth be told I am a bit worried if I get a dx they will think it excuses them even more. I know if I have AS it isn't their fault, but the fact they've never taken an ounce of responsibility for any of the stuff they could control really hurts. Although they still love me and will help in a practical way sometimes, they made it quite clear that once DP moved in when I was 16, they had no intention of worrying about my wellbeing ever again because somebody else would do it for them.

I am glad that your appointment went ok today fuzzpig and that you got a referral. Do you know what happens next? did the doctor say you need to take a parent with you? I know I won't be able to do that.

I think my mum DOES know now, but I didn't tell her, I think my sister told her. But I don't really want to discuss it with her.

The GP will write the referral letter to the specialists, and then I guess they will write to me with an appointment. No idea how long that will take, although she did take note that things are a lot worse at the moment so maybe she will put that on the letter?

I assume the letter from the specialist would tell me what or who I need to bring so I won't know til I get it.

How are you today? Did you think about the list? (don't worry if you haven't, I know it is really really hard and you have done amazingly to even start this thread - the reason it happened so quickly for me is just because I'm so impatient!)

I already have some lists about stuff that I have written in the past so I will go through my notebooks and find them. I am going to put them into a new list in a better organised order and neat enough that I can show to someone. I think it will take me some time to get it right and I also have a science report to write this week. i also had a tutorial today so I need to look at what my tutor wrote down for me to be working on as well because I have got home and already forgotten everything that she said and even what my lecture was about today.

That's good system. Is there maybe somewhere on your phone you can keep a running list? I found I kept remembering new things and it was helpful to be able to write them straight down.

Not sure how I would write things on my phone. I usually have at least 1 notebook with me all the time anyway.

I just told my mum. She phoned and actually asked "what's new" so I thought "oh fuck it" and told her. She was surprised but actually ok.

She also asked, after we talked about it a bit (will talk more tonight) "do you think your dad might have it" to which I said "quite likely". I have been wondering about that for a while too. I suggested as they are going to look at the NAS site tonight, she should wait and see if he finds any of it leaping out at him IYSWIM.

A lot of this sounds very familiar to me. I have the same issue with 'hearing everything', really struggle to follow what someone is saying if there's other conversations going on or music playing, noise makes me very stressed especially if there's more than one thing going on.

At the same time I really really struggle sometimes to process information in spoken-word form, I can sit through talks and lectures and presentations and not take in a single word because I'm distracted or thinking of other things, the worst thing is conversations and meetings at work where someone is explaining something to me but I don't remember a word of it, I'm focused on putting on a 'show' of listening, e.g. make eye contact, nod and smile and say 'yes', 'hmm' etc at appropriate moments, but I'm not really taking in or understanding anything. I get constantly distracted by everything.

If I meet someone and they tell me their name, I've forgotten it literally seconds later, in fact I never really took it in. DP can say things to me and I immediately have to ask him to say it again because I've forgotten, even though I heard him fine.

This makes me sound incredibly forgetful and a bit thick - and I'm not! I have a first class degree and a Masters with distinction, I'm good at studying (with written materials) and writing, I love reading, I just can't take in what people say!

Sorry to go on about me , just nice to see I'm not the only one like this...

Me too Ephiny Reading this thread is like a someone opening a door and letting me in to a place where I finally feel like I belong.

I had never even considered before that I might be autistic despite people asking me if I was in the past. (I can remember the full date of birth and middle name of anyone I have ever been told it for, even from school in the 1970's).

I have not been diagnosed so maybe I'm not but as I'm reading some of the posts it makes me want to cry. This is me, this is why I am like I am. I know I sound mad but it makes me happy. I get it.

I always knew I was different but I never knew anyone else knew what it felt like to be different like me. Thanks everyone and sorry for hijack........

Ephiny - as the hearing issues are what leapt out at you, and you don't have trouble with social life etc, I'd google "auditory processing disorder" :)

Hello AWHFY :) (sorry I don't mean to be taking over the thread system!)

I love your door analogy. I totally agree.

I actually just came back on to say, I feel so much better now I've got the referral. I know I am a long way from dx (may not even get it!) but the fact I've crossed a hurdle, and that the doctor believed me, has taken a massive weight off my shoulders. The last 10 days have been hell.

I felt happy like you, but also quite freaked out as it is like everything I ever thought about myself is suddenly wrong!

If any of you are vaguely wondering about trying for a diagnosis I say do it.