Worried about life!

[Rushed]

Hi their

 

I have been reading this forum for a matter of weeks now and i have been unsure if it's only for adults with children with AS, So sorry if under 18's are not allowed to post. My story is i'm 16 i was given the diagnosis of AS back in april, after a year off seeing endless psycologists. I was told once i was given a diagnosis thing would be ''so much better'' but for me they only seem to have got worse. but to go abit further back in my life, i would say i just just like every other kid i did all the usual kid things, went out with friends, i was never indoors, i would chat away to anyone and i was like this until i hit 12, then click my life just feel to pieces my confidence hit an all time low and i withdrew myself from everything and everyone!

 

I stopped going outside, for a period of time i stopped going to school. So as i was in my house (alone most of the time) my confidence bit by bit was shrinking, so i was taken to the doctors then to a psycologist and we talked for weeks on end, but they could not seem to come up with a reason, why i was finding everything so hard.

 

Until someone else got involved and they were finally able to dig deep and pin point where my problems were. Which later led to my diagnosis of AS, since then i have had loads of help in settling back at school and covering my family problems, but i just don't feel any better, i still get nervous around new people and i start shaking if i'm standing infront of a large crowd, i don't go out much and i am nervous if i have to go on public trasport on my own.

 

But another problem is on appearance i'm just like everyone else, people have expectations off me to be this druggie, trouble maker, sporty guy but i'm not like that at all, i just keep myself to myself and stay within my small group of (lovely) friends who also do not know i have AS.

 

All my problems are on the inside, no one see's how much stress i got through on simple things, but more than anything i just want my confidence back and i can start living my life like it should be instead of feeling awful all the time.

 

Although i have AS i don't think i should be this bad?

 

Thanks

x

[Nic m]

Hi Rushed,

Welcome to the forum,i am sorry life is difficult for you at the moment but i hope with time and some help from others you will feel better.There are some adults on the forum with AS who have given great advice to us mums and dads so i am sure they will be a great sounding board for you.

The one thing that has changed in our household since diagnosis is that my extended family seem to be better able to understand my daughter, so there is less stress in her life which helps.

good luck with finding ways to reduce lifes stresses and i look forward to reading your posts.

Merry Christmas

Nicola

[TheNeil]

Hi,

 

First things first - the forum isn't just for parents of kids with ASDs. I'm not a parent of child with an ASD, I'm actually the one with the ASD (I'm AS too). Ask away, chatter away, and please don't feel afraid or awkward about posting - when I was dx'd (at the end of April too) I was 'lost', 'confused' and went through a lot of things that you seem to be going through. Don't worry, you're not on your own feeling the way you do.

 

Anyway, I thought that being dx'd would be like having a magic wand waved and that life would instantly get better but, just like yourself, I found that the 'better life' didn't happen. Getting that piece of paper which says that you're AS is supposed to make everything alright, everyone will understand what it means and they'll help you and make sure that you're OK...wrong.

 

Being dx'd as AS doesn't make life better but what it does do is give you a reason. I spent 31 years being 'different', being anxious all of the time and many of the same things that you've been through but although having those magic two letters stamped on my forehead didn't solve my immediate problems, it is a massive step forward. It justifies what you are, it 'explains' what you are and, certainly for me anyway, it means that, to a certain degree, don't have to worry about not being 'normal' - you now know that you're not 'normal' so that questioning and doubting no longer applies (believe me, you will still question and doubt though but in different ways and about different things). What a dx won't do is suddenly stop you from feeling uncomfortable in front of crowds, getting nervous on public transport etc.

 

When you're immersed in the world of ASDs it's often far too easy to forget that anyone outside of that little world doesn't have the faintest idea what AS is. I know from bitter experience that people just don't care. It's not that they 'don't care' in a nasty way but that they have no idea what an ASD is or how it affects people - to them you look 'normal' so you must be 'normal' and they never look outside of their blinkered little world. Sadly it's up to you to educate them and this isn't always easy or practical.

 

I hope this helps but what you're going through isn't unusual. I think we expect the dx to solve all of our problems but it can't. Yes it answers some questions and problems but it also poses new ones. I'm not sure what I can really say but I tend to use my AS as a 'shield' (if someone is upsetting me then I just say that I'm autistic and they usually scurry off - ignorance is a wonderful thing at times) or as a way to identify my limits (I can't deal with groups of people, but it's because I'm AS...so forget about doing that and try to find something that I can do and stop getting upset by not being able to deal with groups of people). I often feel that anyone dx'd with AS in later life (even as late as 16) has developed 'coping' abilities, or, more accurately, 'masking abilities' where you might be going through hell (even with the little things - don't put me in a supermarket, I'll freak out) but you've learned how to hide it and, although it's eating you up inside, you can't (or aren't willing) to let other people see it.

 

OK so how can we get you back on your feet and moving in the right direction again? Well it's going to have to come from you but, given what you've gone through, your confidence will have taken a battering. What I would suggest for the immediate future is to focus on the things that you enjoy (in favour of the things that you hate, can't do or have difficulty with) and try to set yourself little goals. The important word is 'little' as if you aim for the moon and don't get there, your confidence will be hit hard. Just set yourself some goals that you almost know you can do as, when you achieve them, your confidence will start to pick up. Ok it might not be by much but it's in the up direction rather than the down. Once your on your way back up again then you can start thinking about tackling the 'bigger' challenges.

 

It might also be worth thinking about who you're in regular contact with and whether telling them that you're AS or not is going to be a plus or a minus. I initially tried to keep my new 'status' confined to immediate family and immediate colleagues at work but eventually went 'public' and figured that if people knew that I was AS, they couldn't come back at me claiming that they didn't know. Some people will be 'awkward' but the vast majority will be fine about it (and to those you are 'awkward': if you've got a problem with me being AS then you've got the problem, not me). If it was me then I'd be inclined to tell my friends (but I don't have friends so you're one up on me already) and explain that the 'head doctor' has said that you've got 'AS' but that it doesn't change anything...because it doesn't. You're still the same person that you were before but, by knowing, people can sometimes feel as though a missing piece has been fitted to the puzzle and 'unexplainable' things and events that have happened suddenly make sense.

 

I wish I could say that getting dx'd makes everything alright, but it doesn't. Life will get easier but just as some problems are solved, new ones will appear. It might sound a bit blunt but you're stuck with this thing for life and there isn't a cure...now are you going to let it rule your life or are you going to try your best to work around it and make the best of what you've got?

 

If you want to PM me at any time, please do, I'll be happy to help if I can.

[Kathryn]

Hi Rushed,

 

Welcome to the forum - and be assured it's not just for over 18's or parents, it's for anyone who has an interest in ASD from whatever perspective. We have quite a few members around your age, actually.

 

It must be stressful trying to constantly play a role when you're feeling quite different inside. Only you can decide whether to reveal to your close friends that you have AS, but you might find them to be interested and supportive if you do. My own daughter, diagnosed at 15, was worried her two very good friends wouldn't want to know or see her any more, and she has been surprised and pleased that they have stood by her and still enjoy her company. She knows she can be completely herself when she's with them, and honest about anything she finds difficult.

 

You're not alone, stay around and keep posting

 

K x

[phoebe]

Hi

 

just wanted to welcome you to the forum.

 

As a parent, when you get a dx for your child, there are a whole load of emotions that unfold over a period of time, and I am sure that this must be true if the DX is about you. The only thing that I can say is that as time goes on, it gets easier and that the things that you can pick up from the internet etc can really help. Places like this are also a Godsend.

 

Stay on the forum and keep posting - it is great to meet you!

 

Love and hugs Phoebe

[Tally]

Hi Rushed, and welcome.

 

This forum is for lots of different people. It does seem like most members are parents with Asperger/autistic children, but there are several members who have AS themselves. I am 25 and I have AS. I found out about AS 2 years ago and got diagnosed this year.

 

It looks like Neil has already given you some really good advice. He's said all the things I would have liked to say, but he's said them better than I could!

 

It does seem like some of your problems are due to anxiety. A lot of people with Asperger's suffer from anxiety, so it is understandable. The good thing is though, anxiety is a treatable condition. Your doctor should be able to refer you to someone who can help.

 

I can relate to your problems with public transport. I find this really hard as well. Are you able to pinpoint exactly what part makes you nervous? For me, it is where I would have to speak to a stranger. I find it helpful if, the first time I do a certain journey, I have someone with me to do the talking.

 

Speaking to new people is another thing I find really scary. Perhaps it would be easier if you can pre-plan a few things to say to new people, questions you can ask, and topics you can talk about. My mum was very helpful to me with this; maybe your parents can also help you. People with AS can learn by rote ways to cope in certain situations. It is harder than the way other people learn, but it can be done.

 

Tally.

[Jill]

Hi Rushed & welcome.

 

I hope you find this forum helpful & that you feel you can keep posting.

 

We have some fab people on here - many of whom will be able to help you with this (The Neil and Tally I think have proven that with their posts). By the same token, it helps us parents to talk to people who have the dx, because it helps to give us insights into why our kids find some things difficult.

 

I'm not saying everyone with an AS / ASD dx is the same (any more than one NT is like another) but certainly reading posts from people has helped me to be a better mum to my son I think. That's got to be a good thing.

 

So, stick around & we'll help you if we can & you can help us too. Hope you find this place as supportive as I have.

[badonkadonk]

Hiya,

 

I'm 23 and was diagnosed Aspergers last December

 

I will warn you in advance, this post will probably be very long. But you asked for our opinions so this is what you get It's hard to sum up something as complicated as understanding Aspergers into a few short sentences and whatever I say below will no doubt only be a small percentage of stuff that you can learn.

 

I think TheNeil made a lot of good points in his reply so I hoped that helped you somewhat.

 

He pointed out the real key issue when it comes to getting a diagnosis of AS and understanding AS altogether. The point is, is that Aspergers isn't a label, it isn't something you have or something you can cure. All Aspergers is, is the name given to the common traits that some people display/experience. These traits are different to what most people experience (also known as Neurotypicals/'The normal people') so it is easier to classify these traits by grouping them together and calling them a name. Hence Aspergers. It's called so because of the guy who first compiled the group of traits that make up Aspergers (Hans Aspergers was the dude). So what I'm trying to say is Aspergers isn't something, it doesn't exist, Aspergers essentially is who you are. You exhibit or experience all these traits and that makes you the same as me and TheNeil and Tally in that respect.

 

I find it much better to be able to get to grips with what AS entails instead of seeing it as a Syndrome or a disorder. That makes it sound like we're ill or something and we're not, we are just wired differently, tis all.

 

That being said it doesn't make the negative impact of AS any easier to deal with. When I say the negative impact I mean the fear of public transport, not liking being in large crowds of people. Sensitivity to noises, smells and sights. Getting over obsessed with things so much that it impacts on our ability to function in life some days. You know, all the things that make being Aspergers a pain in the backside sometimes. When I say we are just different I'm not brushing it off or trying to make it seem like nothing. A difference is a difference and there is a huge one between us and neurotypicals.

 

So I can understand, when AS is referred to as being 'something' all the time or a Syndrome, how alot of us tend to think that a diagnosis will have a huge positive impact on our lives. When really all a diagnosis is, is someone telling us you know what, all those things you do/feel differently, we named that Aspergers so there you go. That's it. It is huge in a way because at least you know that you're not alone, that you're not ill, that there is nothing wrong with you and, more importantly, that there is nothing wrong with your mental health. I for one spent quite a few of my teenage years thinking I was mentally insane.

 

While the name Aspergers isn't all that important then, what is important is learning about traits and triggers and I think this will be the one thing that could lead to positive improvements in your life. You said that you still feel the turmoil inside, so do I, it's part and parcel of Aspergers I'm afraid but that horrible feeling can be reduced because a lot of that feeling is made up of us not knowing why sometimes we suddenly feel upset, or agitated or irritable. So you need to start doing some research. The National Autistic Society lists some good books on their website and there is loads of information on here in the resources section. Just start looking is the best advice I can give. There will be things you come across on the web that won't be helpful and will be untrue but over time you will start to recognise the key characteristics that make us different, these key traits that we experience.

 

You can't just stop at reading a list of traits either because again they are like the subtitles of Aspergers. Communication difficulties, obsessive interests, resistance to change. All these things are nonsense words and mean absoultely naff all to most people. What on earth are communication difficulties? If you tell Non-AS people "I have communication difficulties" they mostly assume that you can't talk or hold a conversation and it's absolute tosh. You have to look at people's experiences of difficulties with communication. My experience of this trait isn't that I have trouble talking (clearly!) but I do have trouble with taking people seriously, not understanding jokes or why people say nasty things in a joking way (and not mean what they're saying even though I think they do, or else they wouldn't say it at all, even in a jokey way but apparently it's not true....grrrr). I find small talk incredibly tiring and stressful because often I don't know what to say and more often I have absolutely no interest in the conversation and I lack the desire to understand why we should fake an interest just to 'keep up appearances' or something. I don't care what that person is up to, why do I want to sit and talk about it for 3 hours!!!

 

But you ask another Aspie about their experiences with difficulties faced in communicating and you're likely to get a different answer with some similarities. Even though we can all be placed under the umbrella of traits that make up Aspergers we are all individuals first and foremost so we are all going to experience these traits in different ways. They key is, is to identify what traits you experience, find out what makes you, you and what makes you tick. Only when you understand will you be able to try to tell other people what makes you different and how they can understand you better. I wish I would have been able to realise that, when I used to go clubbing as a teenager, the flashing lights and fogs would make me feel angry and irritable because I was experiencing an overload of my senses. If I had known that I could have stopped going clubbing, or found a club that didn't have too many flashy lights etc (Indie clubs are much better than dance clubs for example). I wish I could have known this about myself and been able to tell my friends that this is what was upsetting me instead of fleeing the club, being seen as a weirdo and being bullied by the so-called friends for being a bit weird. But hey-ho, you get what you're given and I'm glad I got my diagnosis now rather that in another 20 years time. I know it could have still happened sooner for you, but being 16 you have even more time to learn about yourself and get an understanding of AS.

 

One of the biggest problems us Aspies face is learning about negative traits and what triggers them, like I mentioned just with the sensory overloading. For years as a kid I had screaming fits and tantrums and meltdowns and World War 3,4,5,6 etc whenever I stepped foot in a supermarket or shopping centre or just singular shops. I didn't know why I felt upset or agitated, I just bloomin well did and I didn't want to be there and I made sure that my mum knew that I didn't want to be there. Now that I have researched Aspergers and know that we tend to experience sensitive senses (if that makes sense) I have been able to identify what makes me feel so mad when I go shopping. It's the artificial lights, the different smells, the many different sights that my eyes have to deal with. The noise of the shoppers and the different conversations that are going on. Combine that with the music they pump out into the shops and the dreaded loudspeaker announcements that confuse the hell out of me in a supermarket. Plus being in a different environment experiencing constant changes in temperature (frozen food aisles or just walking in and out of shops when not food shopping). Plus I've got to try and focus on what I'm doing and where I'm going and my mum is rabbitting in my ear and ARRAGHGHGHGHGHGH. Flip out time. So I avoid supermarkets and shopping if I can because I know it makes me so mad. I do a lot of my shopping online and if I venture out I make sure I'm well prepared. I dress in comfy clothing and make sure my hair is off my face (not a problem for most blokes I know). I wear my sunglasses if I need too and plug myself into my Ipod to shut the world out of my ears. I drink lots of water to combat the dehydration that anxiety and stress causes and I keep a pack of nuerofen in my bag. I plan what I need to buy in advance and try to focus solely on achieving this. If someone is talking in an aisle and it's bothering me, or the loudspeaker is going off all the time I find a quiet aisle and take a minute to chill. I tell whoever is with me that I'm getting ansty and we make an effort to get done asap. I try not to worry about all the things that bother me and I don't beat myself up about feeling upset.

 

This understanding of yourself and creating coping methods is something that you need to look into and figure out. When and where do you get upset or feel weird the most? Think about the environment you're in at these times, is there anything that could be causing you to get upset? (remember to factor in the "new places" thing and not just focus on noises, smells etc) What happens when you talk to people? Does anything bother you then? How do you feel at these times. You sound like a smart cookie so it shouldn't be too hard to figure all this stuff out. It would really help if you could do this with your parents as well, and even your closest friend so that they discover this stuff with you and learn more about you at the same time. Plus you don't have to go explaining it over and over again, and because other people know your traits and triggers they can also explain it to other people such as family and friends and teachers at school or people who need to know that you're Aspergers. Don't be afraid to figure out and tell people about all the little things that bother you. They're not stupid and insignificant to us, they are real things that can upset us. The noises people make when they eat just make me want to throw up and make me mad because I can't block these noises out, where as Neurotypical people's ears do this for them and so when you tell them your issue with food they don't understand or can't see the problem because their ears don't work the same. I slurped and chomped and mashed my food around in my mouth doing it right near my boyfriend's ear and said that is what it sounds like to me, even when I'm sat over the other side of the room and I can't block it out. Now he understands!

 

So, it's all about learning and understanding yourself. On the surface and on the whole we aren't that different to most people. Some of us do have groups of friends and go out and do things that everyone else does. We don't look different, we don't do anything majorly different to other people. It's all the little things that we do/feel differently that make up the huge unseen difference between us and everyone else. Figuring these out is the hard part. Educating those around us, harder. Expecting society on the whole to understand...damn near impossible and this is the one battle we do face. But you can only chip away at people and try not to focus on the fact that most people are, largely unknowingly, ignorant. Focus on you and the world immediately around you and you should be alright.

 

You are going to face challenges and difficulties that alot of other people don't have to deal with. But I still wouldn't have it any other way. I like my positive differences....I have a random sense of humour, I'm quite smart, I'm not blinkered when it comes to seeing the world like a lot of people are. Our minds and our ways are quite unique and special and that's why a lot of us go on to achieve great things. Steven Spielberg, Gary Numan, Dan Aykroyd are just 3 celebrities I can think of at the minute who have AS. But it's like Spiderman's Uncle says "with great power comes great responsbility". We have these brilliant minds but, I guess, in order to address the balance we have things that we are not so good at like communicating and dealing with senses. We also can see all the unjust things that happen in the world, we have strict moral codes and don't prejudice against others. But because we see things this way we also see all the prejudice and immoral things that happen in the world. It's hard to accept, this life that we live in, I struggled for many of my teenage years with learning to understand how we can seemingly ignore problems like starvation and aids in Africa, gun crimes in America. But over time I have learnt to focus on the positives and to try and set a good example by how I lead my life. I'm never going to change the world, I don't want to badly enough and I'm not that smart that I can figure out how, so I just focus on my life and that seems to settle some of the unrest I feel inside.

 

Anyway enough, I think there is enough food for thought for you to be getting on with there. Sorry again about the length but it's hard to explain Aspergers in a few short sentences. Most people write books to give advice. I just write chapters to people on a forum

 

Hope you have a good christmas and can hopefully start taking more positive steps towards accepting and dealing with Aspergers in the New Year!

 

Emily

xxx

 

Oops, forgot to include this link for you. At the minute Josh is keeping a blog for the National Autistic Society to document his day to day experiences and thoughts. He is around the same age as you I think and mega funny! Josh Muggleton

Edited December 22, 2006 by badonkadonk

[Rushed]

Hi everyone...

 

Wow thanks for all the amazing reply's, sorry i have taken so long to reply, i have been away for a few days and to my suprise i had the most amzing time ever. What you have all said has made alot of sense and i just wish everyone else could understand me like you do.

 

At the moment i'm just very confused as to what i Can't do and what i don't want to do, for a while now my mum had been planning to stay at a friends for the weekend, and like every other time i'm offered to go anywhere outside where i live, i gave the usual straight no, but for a complicated reason i had to go. I was shocked at how much fun i had, i live in a village in the middle of nowhere, but being in a city was amazing.

 

I just felt free, i could walk into town go into a shop, i even did the things i hate the most, like getting the bus on my own. I even went for a walk with people i had never met and talked to them like i would my mum, when i feel confident i sometimes think i get over confident! yes i was nervous doing all these things but doing them made me feel so much better. My mum was gobsmacked at how happy i was during the 4 days i was there.

 

Anyway, my point of posting all this was, i think i get it into my head that i ''can't do it'' but when i do it it's not that bad,

Edited December 26, 2006 by Rushed

[dooday24]

hi rushed welcome to the forum hope u find it as helpful as i have hope to help if i can my son only got a diagnosis of as about a month ago but i new from wen he was a few months old he had as he is a very special boy and we love him just the way he is. its just nice to get to chat to others that can help and support you at times love donnaxx

[TheNeil]

Hi everyone...

 

Wow thanks for all the amazing reply's, sorry i have taken so long to reply, i have been away for a few days and to my suprise i had the most amzing time ever. What you have all said has made alot of sense and i just wish everyone else could understand me like you do.

 

At the moment i'm just very confused as to what i Can't do and what i don't want to do, for a while now my mum had been planning to stay at a friends for the weekend, and like every other time i'm offered to go anywhere outside where i live, i gave the usual straight no, but for a complicated reason i had to go. I was shocked at how much fun i had, i live in a village in the middle of nowhere, but being in a city was amazing.

 

I just felt free, i could walk into town go into a shop, i even did the things i hate the most, like getting the bus on my own. I even went for a walk with people i had never met and talked to them like i would my mum, when i feel confident i sometimes think i get over confident! yes i was nervous doing all these things but doing them made me feel so much better. My mum was gobsmacked at how happy i was during the 4 days i was there.

 

Anyway, my point of posting all this was, i think i get it into my head that i ''can't do it'' but when i do it it's not that bad,

 

I don't want this to sound patronising in the slightest, but well done you. It's all too easy to assume that you won't enjoy something and convert that into 'can't do it'. It's also really easy (as I know only too well) to get yourself into a little 'safety bubble' and be very unwilling to come out of the 'bubble', try new things, break with routines etc.

 

You're still young and you're just on the cusp of life, about to experience new things, new people and new situations so you're about to discover a whole new world that is radically different from what you've known so far. It might sound a bit blunt but a lot of the pre-conceptions and 'limits' that you've developed as a child get radically changed when you become an adult and interact with the world as an adult.

 

My advice would be to realise your limitations but never to hide behind them. Some things you'll find that you can't do (and that's really 'can't' and not just 'don't want to') but that doesn't mean that you're barred from doing and trying new things or going back and maybe having another go at something...if you want to (the choice is now yours). You now know what you are and hopefully you can draw a lot of strength from that but it might take time. Ok so I can't do X but that's probably because of my AS...so what about Y?

 

Go out and face the world. Some days you won't want to and you'll happily hide under the duvet all day but so what, there's always tomorrow. And take your time with things. Discovering what's a 'can't' and what's a 'don't' can be difficult and, especially as you and your little world change, you might find that how you classify things also changes.

 

Like it or not, you're on the AS path now and, while the destination of Happiness-central might be a long way off, you're moving certainly in the right direction.