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.

Hi,

I'm a primary teacher and have learned a little about Autistic spectrum disorders (including Aspergers) over the years - and I have a personal interest as I also think I would have been diagnosed autistic if diagnosis had been more common when I was at school. You may well be autistic, but equally, you may just be different, and there is nothing wrong with that - I have never been like other girls and personally I see that as a strength rather than a weakness!

If you are autistic, it is likely you will have difficulty generalising things (maybe in maths, you will learn a method for eg dividing 3 digit numbers by 1 digit numbers, but you will not easily be able to apply the same method with bigger numbers without help - this is a very specific example). You might find things like planning science tests hard (working out what to change, measure, keep the same, for example). You are likely to have a hobby that you tend to get quite obsessed with, you are likely to like order, eg collecting complete sets of things, putting things in order (alphabetised CDs) and to prefer your own company to that of crowds - I would always rather be on the edge of a crowd of people, looking in and watching what is happening, for example, rather than being in the middle of it. You are also likely to be visual and to like things written down in a logical order.

However, all of these traits would not necessarily make you autistic, and I am not by any means very knowledgable about this. Hopefully someone with much better expertise than me will come along soon.

Please be assured that you do not have to be like everyone else - you don't say how old you are, but I'm guessing you're at an age where it seems like you HAVE to fit in with everyone else - don't let that get you down, the most interesting people in life never fit in with everyone else around them!

It is also likely, if you do have some level of autism, that one of your parents passed it on to you - perhaps your mother, if she is having difficulty relating to you? That's a symptom too. Sometimes when children are diagnosed, a parent recognises the symptoms in their husband/wife too.

This test looks quite straightforward: glennrowe.net/BaronCohen/AutismSpectrumQuotient/AutismSpectrumQuotient.aspx

If you are diagnosed, by the way, it doesn't change you - just explains some behaviours (which is often more helpful for those around you) and allows you to find some strategies to cope a bit better.

Hope you find some support.

SystemofaDowny

I am currently in the process of being assessed for Aspergers, and know exactly what you mean about not feeling the same as other people, and having difficulties with things people assume you should be absolutely fine with.

I will send you a private message, but wanted to say, you are not alone out here, there are a lot of us around, more than you probably realise, and I will do my best to help you find groups in your area to help you.

xx

Thank you for your replies. I have done the test you gave a link for, my score is 43 out of 50. The first person talked about science tests. I am on a science course and got very good grades in all practicals as I follow the instructions exactly. This year i had to design my own test and carry it out. I can not do this and I have failed it. My tutor does not understand why because I did very well before. I don't know how to explain why either.

You also say you don't know my age. I am 32. I don't think I have to fit in anything. If you mean do I want to be the same as other people, I do, but I know I am not. I say I do because for me it is always so hard to do things other people can do easily. Also because nobody understands this. If I can change this one thing then I will be happy to be me.

Hi,

I would recommend talking to your doctor, who should be able to refer you on to any local specialists - or maybe a counsellor who has experience of autistic spectrum disorders and will be able to help you come to terms with it and manage it. It's not anything you'll be able to "change", in the same way that you can't change the length of your legs. It just means you'll have certain strengths (lots of them, which other people will be jealous of, particularly organisational skills if you're anything like me!) and certain weaknesses (generalising, empathising with others, maintaining friendships with other girls (I find this very tough as I'm not bothered about the same things a lot of female acquaintances are, and I find small talk pointless - I'm a terrible girl)) - but everybody has strengths and weaknesses. It's not a case of changing, more a case of learning about your personality and how it affects your interactions with others and taking steps to sometimes be less "you" and more "normal", ie more like others, because this will help others relate to you (this was the biggest thing for me). Also, be open about it. I'm a year leader at school, and each year I have to say to my team "I'm crap with people because I'm autistic, so if I'm too blunt, or I don't understand how something will affect you, please give me a prod because I likely won't notice otherwise". They're fine with it.

It's an area that's increasingly understood in children but still not in adults, so blaze a trail! Tell people about it! People are generally pretty interested in things like this.

Let me know how you get on x

Hi system
I just wanted to say you aren't alone.

After a post on MN I also took the AQ test and also got 43. I spoke to the national autistic society and they sent out lots of advice. I've now written a list of all the things I do that I know are 'wrong'. Until that thread I never really thought there was a connection between them, but now I feel like I may have an explanation of why I have lived my 25 years in isolation (mentally, even when around people), why I have felt different, and ashamed.

I am off to the doctor on Tuesday to ask for a referral and I am really scared. Nothing has changed but everything has changed, if that makes any sense. It's like my whole life has been a lie, and I keep thinking if I'd just realised earlier (or if my parents had) I wouldn't have spent so many years hating everything about myself.

I will stop rambling now but I just wanted to tell you somebody else is going through the same thing and if you want to chat then just post here or PM me. x

hello OP, i have a son of 20 who has AS, i think he would relate to your science practical

if you want to see someone about getting a dx (diagnosis) i would start with your gp and ask for a referral to a psychologist with some experience in ASD. My son was dx at 7 but i know he found it a huge relief to understand why he was different, and knowledge is power!

pick a sympathetic doctor at your practice and start by going for a chat with them, take someone (a friend or family member) with you if you think you might struggle to explain yourself.

good luck with it! i think getting a dx is a very good idea, i think it really helps people to understand. My son is brilliant at some things and hopeless at others....his tutors all understand why and he gets extra help at uni to overcome this.

Hello

My usual name on here is Peachy; I am in the referral stage of a dx myself, have a son with Asperger's, a son with autism and a son who has just been diagnosed with SLD and is being assessed for Asperger's; I am also at the last hurdles of an MA in Autism.

I always knew I was different but when i realised why (with my tutor and the local psych's help, she lectures at uni) it hit like a brick; I started to really dopubt myself and my own validity. Two years on it's still early days as it took a near breakdown to ask for formal help but recently I started to like myself agin- it's been a long trip.

Hugs to you and if there's anything I can help with, holler X

OK thank you again for replies. Most people say I have to talk to my GP. This is going to be hard. I have a doctors appointment next monday about a blood test I had. Maybe I can ask then but I am worried about it a lot. I do not like to talk to people and find it really difficult. Even to write on here is hard for me. I will need to plan what to say first before I go there- what do I say? what did other people say? I can't take anyone with me because it is worse to talk in front of 2 people or more. Also no one else knows what to say because they do not understand me. I also have an appointment with the university counsellor next week. I am so terrified about this. I start shaking about the kind of questions she asks me. I never know how to answer unless I have practised before what to say, but I can't because I don't know what she will say. I have no control over my life, everything is going wrong. I just want it all to stop so I can be on my own to think. How can I fix this when I don't even know how to speak and ask for help from anyone?

Could you print out this thread and take it with you? That way, you have done all the 'talking' on here and they will be able to respond to your concerns.

System, I am obviously not at expert as I'm basically at the same stage as you. But I would really recommend going on autism.org.uk and looking at their info on Aspergers. It is really helpful the way the symptoms are divided up into categories. Please phone the helpline too (open 10-4 on weekdays) - phoning can be difficult but they were so friendly and helpful so it was totally worth it.

I feel much more prepared for my appt tomorrow because I have a list of very specific behaviours that I struggle with. I think if I didn't have that, and I were to go in just saying "I am different" then we wouldn't get anywhere.

Hope nobody minds but here is my original thread. Reading the 'symptoms' may help you to narrow down what your own ones are. Since that thread (only just over a week ago! It's been a blur since then, a very scary blur) I have written down more and thought more specifically about them.

my advice on talking to the gp system would be to write it all down - bullet points so its clear and concise, then you can either give the gp it to read, OR you could read it out to him, so you dont have to worry about what to say when you are there.

tell him about the online test - mention it in the notes.

is there a friend or person you trust at uni who could help you?

I read your thread fuzzpig and most of those things are the same for me except the hearing stuff. I hear everything, I wish I didn't but I can't block it out. It is really bad if I am somewhere lots of people are talking because I get so confused and it makes my head hurt. Also I don't always know where the sounds come from- like if someone knocks on my front door it sounds like the noise is coming from my kitchen and i can never find a phone that is ringing in time.

I hope your appointment goes ok tomorrow. If it does then maybe I will feel better about trying to speak to my doctor next week

auditory issues are very common in people with AS or ASDs, my son has issues with noise too. (when he was little, we had his hearing tested 3 times!)

everytime you realise you have an issue with someone associated with AS, jot it down.

make a list, to give to your doctor.

That's what I've been doing too vicar - unfortunately a lot of what I've been realising has been while I'm at work, and made me rather miserable. But I also figure at least I may get an explanation for WHY I do all these strange things.

System I understand what you mean about too much/too many noises. I get irrationally angry inside when there is too much noise, for example in the mall or if there is TV and another noise in the room. Sensory problems are often a symptom of ASDs but because there are so many variations and possibilities it is unlikely that two people will have the same set of problems. I find touch a massive problem as well as hearing, but not visual, smell or taste.

I will try that but I have been trying to cut down on writing lists as I was spending too much time on it and nothing else.

I also hate anyone to touch me, even people I like, it makes me feel sick especially if I'm not expecting it. Other things as well I don't like the feel of touching my skin- even water and wind which is a real problem. If a person breaths on me I have to try so hard not to scream i hate it so much.

Just wanted to say its not Asperger's Disorder, its Asperger's Syndrome.

all of those things system are also symptoms - even the list making! my DS used to do reams and reams of 30 and 60 times tables in a list - i had literally hundreds and hundreds of pages of lists - but it harmed no one and it gave him comfort to do it - so wheres the harm? make lists if it makes you feel safe.

write all of these things down, the more you write, the more evidence you have that supports your being referred to a specialist in the field.

RFF I've been fighting the urge to say that [pedant emoticon] :o

And YES on the lists. It drives me up the wall. EVERYTHING has to be on a list, I can't do anything spontaneously, it makes things like birthdays/xmas a total misery because I plan and plan and plan and memorise the lists every night and and and :(

This is one time when you do need to write though. This is one time when the obsession will do you good. It really has helped me. I used the categories on this page to clarify my worries:
Social Communication
Social Interaction
Social Imagination
Love of Routines
Special Interests
Sensory Difficulties

A word of warning though, some of the behaviours didn't fit easily into a specific category (I'm sure they would if I were an expert) and that wound me up a bit

But really it was worth doing. Because I am a very logical person it helped to lay it all out in such a clear format. I can now look at it and see that I do have valid concerns (rather than just continuing to think I'm useless, which is what I have felt my whole life!) and I can use that to approach the GP.

Make the list. It is ok to do that :)

System I just reread the OP and what I hadn't picked up on before was what you said about your mum. Do you feel quite let down by her? It seems horrible that she has always laughed at you for being so different and yet never tried to get help for you

I have resentment for a different reason. I am so angry that my parents never noticed a single fucking thing. SO angry. All that mattered to them was my intelligence. I think that's still the case, sometimes, and I'm 25 FFS.

Also, I was wondering if you've been treated for depression in the past? The NAS advisor said that was really common - the AS symptoms can make you so isolated and unable to function properly (yet enough to 'get by') that depression is almost inevitable. Now I know why several attempts at antidepressants got me nowhere. Increased seratonin is never going to change the way I think and act, the way I communicate with others (or not...), the obsessions.

I was really worried that the GP might laugh off my symptoms as being symptoms of depression (which has been on my medical records since age 14), so I'm glad the advisor told me this is a common mistake. A weird kind of mistake, because I couldn't possibly deny that I am depressed (anyone would be depressed if they were as fucked up as me!) - but a mistake nonetheless, as the bigger underlying reasons were missed or ignored.

I am so sorry I wrote something wrong. I don't want to upset anyone. I was repeating what my college tutor said. She was going to send me to educational support about it but then I left college. i feel really bad now.

system - its doesnt matter what you called it - really! we all knew what you meant.

it is true that depression is very common in people with AS, that is why i believe its so important to get the correct diagnosis, i think it must be very worrying to know that something is different yet not know what it is, and must add to the sense of anxiety that people with AS also often feel. My boy has known since he was 7, and i think it helps with wellbeing.

Ok but it matters to me, I don't like to get things wrong and I feel bad if I upset people even if I don't ever mean to. I won't be able to stop thinking about it.

I don't know why my mum says those thins- recenlty she told me something else she read about a boy with autism who was scared of christmas presents because she knows I hate them too. My mum would never have found help for me. One time I was really ill and I thought I was going to die. I had flu and was covered in a rash. It was an allergy to the cough medicine only but I didn't know that. I kept hoping she would take me to the hospital but I knew she wouldn't. We never got taken to doctors or dentist ever as children. You said intelligence is all that mattered and I think that is the same. She hated me when I left school aged 16 because she wanted me to go to university. My mum works at the university I go to now. She will be able to see the grades I get this year and she will not be happy. I am really scared about that.

i have been treated for depression since I was 16 years old and also for anxiety. I have got anti-depressants now, but they do not work. I have tried lots of types but none work for me. After a while I stop taking them until I go to the doctor about something else then they tell me to start taking them again. About 5 years ago I was also taking anti-psychotic tablets which did make me stop worrying a bit and reduce other things but I stopped taking those as well because I didn't like going to see that doctor anymore.

Don't feel bad system. It's just a name really.

You sound like you're in a really bad place right now. Is there anyone around to talk to?

I know it's really hard to talk to anyone but I would really recommend the Helpline 0808 800 4104, they really are amazing.

I really do think knowing will help vicar. I feel like I would have a reason for how I am. If I know what is wrong with me then maybe I won't have to apologise for myself so much as I will know the syndrome causes the behaviour, it's not just me being crap. Just little things like saying "I don't understand what you just said" instead of being ashamed and pretending I understood. I am already practising this one on DH!

i understand, but i am quite sure that you have not upset anyone.

it sounds like your doctor has been treating the symptoms without ever finding out about any underlying condition - now could be the time to change that. You have a very good understanding of your own condition - you just need to educate your doctor!

make that list. go see the gp. the more you know and understand the more settled you may find yourself feeling.