You have to laugh or you'd cry

[Lyndalou]

It's New Year and I don't feel happy. In fact, I feel quite miserable. For the last 2 years, I've tried to raise awareness about what autism is for people to understand how to relate to my little boy and for people to understand that it can be a 'hidden' disability and that us girls can have it too. I was too outspoken from the start. I was too enthusiastic. I thought I could challenge perceptions and stereotypes and that people in RL would actually listen. However, it's all backfired. I'm not believed. I'm seen as being an attention-seeker and now that I'm in full-on withdrawal mode, simply cold and horrible. My son's not that autistic because people KNOW what autistic is, after all they've seen Rainman and there are other kids in the town who DEFINITELY have autism and compared to them my kid is obviously not. As for me, I'm talking rubbish because again, I don't LOOK autistic and everyone's quite clearly intelligent enough based on next-to-no actual knowledge on the subject that I'm talking rubbish. I'm sick of all the posts on FB (yes, that's a lot of the trouble) where autistic children are 'angels'or 'treasure at the end of the rainbow' or some other equally nauseating description with mums responding saying things like 'My child is an angel with wings' or other variations on the theme. No. Having autism is damn hard work a lot of the time and parenting a child with autism can be damn hard work too. I'm sick of the posts which say that THIS YEAR in 2013 they pray that people will understand what autism is. Everyone supports those posts, everyone 'likes' them because after all everyone wants to be seen to support such a worthy cause. Still, no-one listens and no-one wants to understand. A few days ago, a local woman killed herself and no-one had any idea before she did it that she was in such turmoil she would jump in front of a train. There's been a huge outpouring of grief for her. I've tried to tell people how difficult my life has been and particularly about recent times. Is it preferable that someone just kills themselves and everyone remembers the 'wonderful' person they were when they were still blissfully ignorant (not that anyone would think I was wonderful)? Because whenever I reach out, I feel that I just manage to push people away because they really don't want to know. How much more explicit can I be? 'I'm considering going back on the happy pills because I feel quite depressed, my emotions are yo-yoing and December is an extremely difficult time for me'. Response (not literally been said): 'Oh that's a shame. You're obviously just an attention-seeker. We'll just calmly walk the opposite direction now.'

 

Seriously, I'd have to laugh or I'd cry. Actually no. I'll just cry.

[smileyK]

@ lynda lou - glad you were honest enough with yourself inner within yourself to openly admit how it truly is for you emotionally I'm at exactly same level of where you're at emotionally felt nothing numb pretend happy fake seeing in brand new year felt grump but with how been battling struggling feeling lately been difficult to swallow hard down just grin and bear it carry on esp when my 7 year old neice is present as feel it not right fair to place her in the middle of my tumbling crumbling mess of life how I feel deep inside all as a classic "norm" child is innocence and happiness plays massive part impact in their lives felt robbed of mine totally due to " the missing hidden years" in background struggling make sense of anything still am lost and confused didn't feel like celebrating after how I've been and been feeling spoilt ruined total atomsphrere/ environment for me, if you feel like heading in direction reaching a point of needing anti - Dps meds no harm booking docs appointment tell them how feeling too! Good luck with that I can empathise as everyone around me family bouncing around with excitement from blasting loud blaring music from large speakers found hard manage that and masses amounts of people crammed in! Not good in that way sensory issues! Tried to join but wasn't entirely working so feel like at least made an true effort stuck til the end til we all left (mum,dad and brother)!

[Sa Skimrande]

It's New Year and I don't feel happy. In fact, I feel quite miserable. For the last 2 years, I've tried to raise awareness about what autism is for people to understand how to relate to my little boy and for people to understand that it can be a 'hidden' disability and that us girls can have it too. I was too outspoken from the start. I was too enthusiastic. I thought I could challenge perceptions and stereotypes and that people in RL would actually listen. However, it's all backfired. I'm not believed. I'm seen as being an attention-seeker and now that I'm in full-on withdrawal mode, simply cold and horrible. My son's not that autistic because people KNOW what autistic is, after all they've seen Rainman and there are other kids in the town who DEFINITELY have autism and compared to them my kid is obviously not. As for me, I'm talking rubbish because again, I don't LOOK autistic and everyone's quite clearly intelligent enough based on next-to-no actual knowledge on the subject that I'm talking rubbish. I'm sick of all the posts on FB (yes, that's a lot of the trouble) where autistic children are 'angels'or 'treasure at the end of the rainbow' or some other equally nauseating description with mums responding saying things like 'My child is an angel with wings' or other variations on the theme. No. Having autism is damn hard work a lot of the time and parenting a child with autism can be damn hard work too. I'm sick of the posts which say that THIS YEAR in 2013 they pray that people will understand what autism is. Everyone supports those posts, everyone 'likes' them because after all everyone wants to be seen to support such a worthy cause. Still, no-one listens and no-one wants to understand. A few days ago, a local woman killed herself and no-one had any idea before she did it that she was in such turmoil she would jump in front of a train. There's been a huge outpouring of grief for her. I've tried to tell people how difficult my life has been and particularly about recent times. Is it preferable that someone just kills themselves and everyone remembers the 'wonderful' person they were when they were still blissfully ignorant (not that anyone would think I was wonderful)? Because whenever I reach out, I feel that I just manage to push people away because they really don't want to know. How much more explicit can I be? 'I'm considering going back on the happy pills because I feel quite depressed, my emotions are yo-yoing and December is an extremely difficult time for me'. Response (not literally been said): 'Oh that's a shame. You're obviously just an attention-seeker. We'll just calmly walk the opposite direction now.'

 

Seriously, I'd have to laugh or I'd cry. Actually no. I'll just cry.

 

I understand completely what you are saying here, as I had it from my distancing friends on Saturday night where again I caught them all out together without inviting me, I found they think I am an attention seeker and so I am too hard to deal with and so they don't want me around when they want to have a good time, gee thanks friends !

 

They say I am highly intelligent with knowledge in areas they cannot even think to fathom but my social side plainly sucks, so I say well there is a very good reason for that hadn't you heard and guess what, it isn't going to get any better because there is no help for what I have aside from friends who don't judge and I can learn from, but as the saying goes you know who your friends are when the going gets tough and so I don't appear to have any friends as I cannot deal with dishonesty, it's a trust issue you understand.

 

But xmas I did my best to treat it as just another day, no TV it was easier and I slept most of it and last night I actually forced myself to go out to the pub at 10.30 to do the human thing, two pints and I fell over outside the pub, drunk on two pints, that's new and have been awake ever since, things aren't good and I know I have to sort myself out somehow, but it's hard with the isolation I experience where no one seems to care and I see no one unless I am forced to go out and believe it I have to be forced sometimes as in not eaten for a couple of days and no food left. I go out do what I need to do and scurry back lock the door behind me and close the blinds, no one knows I am here.

 

Facebook although I maintain a profile on there I don't go there often as I don't need to know someone has just washed their face and I do find if people are bandying about the term attention seeker facebook is full of them, talk about shallow, we support this, or like this, well mate words are cheap anyone can afford them I will have respect for you when you delve into your pocket or better still get involved with what you profess to be passionately in support of, then it is just excuses.

 

ASD to me is damnation, a disease for life with no cure, yes fine the diagnosis explained a lot, but it didn't help and I have degenerated.

 

SSRI's are the only answer along with all their unpleasant side effects, but I don't want to be taking experimental drugs all my life, I just want to be human like everyone else as the way I exist isn't life, it is just an existence.

[matzoball]

Smiley, this post isn't about your issues - but you need professional help.

 

Lyndalou - I hope things get better for you soon xx

[Lyndalou]

I'm sorry this is such a negative post. Smiley, don't feel bad about commenting. I don't always feel like this and you won't always either. It's so hard when you are smack bang in the middle of it though - you can feel like you can never get out of it and it can take a lot of effort and determination to get to the top again. I always picture myself like I'm right at the bottom of a well or a pit (a bit like in the movie 'The Ring' but without the creepy girl...lol) and I am clinging to the side, slowly inching my way up towards the light. I agree with Matzoball to though Smiley that you do need help (I'm thinking about the meds here) and I probably do too. I do appreciate what you say too SA as I know how hard it is and it's so difficult to know 'for sure' if your perception is distorted or things really are as they appear.

 

I'll just take it as an omen for the coming year that my oven gave up the ghost in the middle of preparing New Year's dinner when I got up the oomph to bother. What fun and games are in store for me this year? I'm trying to be positive but this morning I was thinking about the logistics involved in just 'disappearing' and starting again. My husband persuaded me to ask my neighbour for the use of her oven to finish cooking which she agreed to. I've spoken to her a lot about my son and my own situation because she has actually asked - she was the person who asked me 1 1/2 yrs ago how I was as I didn't seem 'right' - and she has remained interested in what ASD is about. It always gets to the point though that yet again I start being very paranoid about what she is thinking about me too (but not as paranoid as with other people). She reckons that if anyone was avoiding me or thinking badly about me that she would know. She reckons that it is simply my fuddled state of mind that is dictating those perceptions. My take is that people wouldn't go out of their way to say anything to her about this as they know that we talk quite a lot.

 

Is it just all in my head?

[smileyK]

I feel like everything in my head - making me feel mad,crazy even more so til spirals completely out of control struggling climb out the hole without a hand or rope to hold onto everything seems step too far too much scared afraid even make first tip toe attempt to hold your breath panicking becomes such an easy free emotions as does added pressure / strain of depression!

[trekster]

Reminder to all that there are links to websites offering help for mental health issues. 'Sources of mental health help' i think the thread is called.

 

Theres also natural remedies to help with depression. Taurine and Magnesium have helped me in the past as has folic acide, b12 and b complex/b 50s in general.

 

i have some idea what the OP means about the New Year being overloading. Last year was particularly difficult for me, i had just become wheelchair bound a few months earlier and so called friends were rejecting me because of this 'decision'.

[Sally44]

Christmas and New Year are always sold as the big 'family' and 'social' events. So for anyone not in a family/relationship/group it just exaggerates those feelings of isolation.

 

I don't have any solutions. I just think it would be so good if those on the spectrum could network, meet each other and make their own circle of friends.

 

My Christmas was not perfect. My husband cooked it, whilst I was out locking up our animals. When I came home he had fallen asleep and burnt the dinner. Then we had a huge argument [probably many families out there did the same]. We said some horrible things to eachother. Said we would prefer to be separated. Didn't speak to eachother the next day. And then everything returned to normal!

 

I'm sorry your friends have let you down. If your friends don't want to know about being on the spectrum and how it affects you, then you can't force it on them. But I would ask them why they did not include you, and tell them that they have not behaved like friends. I'm not going to say to cut them off. But it would be advisable to widen your circle of friends if at all possible, in the hope that you do find true friendship elsewhere.

 

If I am honest, I don't have any friends at all either, apart from my husband and family. There are people I know. Occasionally I might go out with one of them, but that is it.

[smileyK]

is socially withdrawing a natural guard/protection from the world itself to not get them involved as been asked to go out saturday afternoon for work mates birthday meal there's 18 of them going but freaked out not by nubers as didn't know how many going til asked her but made up real lame pathetic excuse about saying going to my auntie in hertfordshire which isn't true at all just can't cope /manage especially being social would push me closer to the edge ... but feel bad and guilty ???

[Lyndalou]

Sorry to hear you had a bad Christmas Sally and absolutely get where you're coming from. That conversation took place a couple of times last year in this house too. It's not easy but it probably does clear the air if you can only just get past the argument. Glad to hear you are back on speaking terms now! I think I would have been hacked off if my husband had fallen asleep and burnt the dinner too...it's not like it's an important meal is it?

 

Smiley, I think withdrawal is quite a common 'coping strategy'. I've certainly done it for a very long time. With regards to the meal, I would possibly have gone for a short while and then made my excuses before they went on for a drink. If you were to sit to one end of the table and not in the middle there are less people to speak to. I do understand your reticence though as it can be very daunting. When I was 20 I attended a wedding and the dinner was in a very small room. I went to the loo feeling quite ill and then had such a horrible hot flush that I was drenched head to toe and had to leave. I now recognise that it was a type of panic reaction but at the time I had absolutely no idea what had happened to me. I say this to you because over time you will start to recognise the signs that you are struggling in different situations and then this may alleviate some of the 'anticipation' anxiety.

 

I'm not feeling as bad as I did this morning. I've got a horrible sense that it'll be a bit of a rollercoaster for a while.

[smileyK]

I think withdrawal me trying to shut off and down everyone in sight! As all too much just want be alone as can't let anyone down become a massive burden that way

 

The thinking builds up to point of the world out to get me destroy ruin me everyone hates me can't socialise and enjoy when comes down to these thoughts!

Edited January 2, 2013 by A-S warrior
merged post together, to keep topic easy to read.

[indiscreet]

,,, For the last 2 years, I've tried to raise awareness about what autism is for people to understand how to relate to my little boy and for people to understand that it can be a 'hidden' disability and that us girls can have it too. I was too outspoken from the start. I was too enthusiastic. I thought I could challenge perceptions and stereotypes and that people in RL would actually listen. However, it's all backfired. I'm not believed...

 

I can understand how disheartening it is, Lyndalou, but try not to let it get to you.

 

After I received a diagnosis I was happy to tell a few close friends and relatives thinking that this would explain certain 'oddities' in my behaviour over the years but (with just one exception) I found I wasn't believed. The reply to any examples of AS I gave was "Well, I'm a bit like that" and "I'm sure most people feel the same way." The fact is that most people who have no personal experience of autism - either in themselves or in family/friends - believe it's just the latest fad; people wear Asperger's Syndrome in the same way they would acquire the latest fashion accessory as well as using it as an excuse for criminal/anti-social behaviour.

 

The problem with children is that the discovery of childhood autism unfortunately coincided with the growth of a 'child-centred philopsophy' with regard to their upbringing so that NT children are often permitted to behave in a way very similar to those who are genuinely on the spectrum, with the result that among the general public there is a large amount of sceptism about the condition itself.

 

I don't think trying to explain what it's like being on the spectrum works any more successfully than trying to describe the aura that accompanies some severe migraines to people who've never suffered the effects. I know that sounds negative but that's the way I've come to see it.

[trekster]

Christmas and New Year are always sold as the big 'family' and 'social' events. So for anyone not in a family/relationship/group it just exaggerates those feelings of isolation.

 

I don't have any solutions. I just think it would be so good if those on the spectrum could network, meet each other and make their own circle of friends.

 

****In Bristol and Bath we do network and meet up with each other once a week. Also many autistics do have friends in fact i met up with some just before xmas and also some friends from a MH group just before xmas.

 

My Christmas was not perfect. My husband cooked it, whilst I was out locking up our animals. When I came home he had fallen asleep and burnt the dinner. Then we had a huge argument [probably many families out there did the same]. We said some horrible things to eachother. Said we would prefer to be separated. Didn't speak to eachother the next day. And then everything returned to normal!

 

I'm sorry your friends have let you down. If your friends don't want to know about being on the spectrum and how it affects you, then you can't force it on them. But I would ask them why they did not include you, and tell them that they have not behaved like friends. I'm not going to say to cut them off. But it would be advisable to widen your circle of friends if at all possible, in the hope that you do find true friendship elsewhere.

 

****i agree with Sally here, you might prefer to find a new circle of friends who you feel accepted to be around. i went to my 1st birthday meal the other week. i had never been invited to a friends birthday dinner in my life then he turned 40 and invited me out to the pub. Even better his sister bought my dinner and drinks :-). it was totally accepted and his family really appreciate the work im doing with autistics in the Bristol area.

 

If I am honest, I don't have any friends at all either, apart from my husband and family. There are people I know. Occasionally I might go out with one of them, but that is it.

 

Dont you have online friends that you PM from time to time?

 

lyndalou pleased you are feeling a bit better and hoping your rollercoaster smooths out. Either that or the song 'life is a rollercoaster' cheers you up :-)

Edited January 2, 2013 by trekster

[Sally44]

If I'm honest, if I divorced my husband, and was separated from my kids and family, then yes I would feel isolated. But apart from that I am happy doing things occasionally with people I know. I find the whole "friendship" thing quite draining. I don't want to have to meet up regularly with people to 'keep up' the relationship. I like doing what I like doing. And I am happy [actually prefer] to do that on my own.

Edited January 2, 2013 by Sally44

[oakers]

I find the whole "friendship" thing quite draining. I don't want to have to meet up regularly with people to 'keep up' the relationship. I like doing what I like doing. And I am happy [actually prefer] to do that on my own.

 

I'm starting to realise I feel the same. I'm fed up of being the one that usualy has to make the effort too. I'm much better, for the most part, just doing my own thing, when I want to do it, bar a couple of exceptions.

Edited January 2, 2013 by oakers

[Lyndalou]

I can understand how disheartening it is, Lyndalou, but try not to let it get to you.

 

After I received a diagnosis I was happy to tell a few close friends and relatives thinking that this would explain certain 'oddities' in my behaviour over the years but (with just one exception) I found I wasn't believed. The reply to any examples of AS I gave was "Well, I'm a bit like that" and "I'm sure most people feel the same way." The fact is that most people who have no personal experience of autism - either in themselves or in family/friends - believe it's just the latest fad; people wear Asperger's Syndrome in the same way they would acquire the latest fashion accessory as well as using it as an excuse for criminal/anti-social behaviour.

 

The problem with children is that the discovery of childhood autism unfortunately coincided with the growth of a 'child-centred philopsophy' with regard to their upbringing so that NT children are often permitted to behave in a way very similar to those who are genuinely on the spectrum, with the result that among the general public there is a large amount of sceptism about the condition itself.

 

I don't think trying to explain what it's like being on the spectrum works any more successfully than trying to describe the aura that accompanies some severe migraines to people who've never suffered the effects. I know that sounds negative but that's the way I've come to see it.

 

I have to say that these are my thoughts exactly. I find it exasperating that I am trying to teach my son good manners and to be well-behaved and in the minds of those not on the spectrum, they do not equate politeness and good behaviour with autism. Early intervention is the byword in teaching autistic children and I and other adults I have spoken to have said that they had strict upbringings with clear rules and boundaries - this I think was our 'early intervention'. I believe strongly in the plasticity of the brain and that the more it is 'exercised', just like any other muscle, the more the person learns from a very early age and I think this is the philosophy behind 'early intervention'. I can never get my head around the fact that professionals/others cannot contemplate that this type of learning cannot have the same or similar results by being 'informal', within the context of the family rather than something that is in the domain of the 'experts'. I think this is why us adults are just not really taken seriously because how can we learn our own strategies and ways of coping which are now only being 'discovered' by those experts? It's like they think it is not really possible.

 

I think children in general these days are cosseted and pampered, given all they want when they want it. They can go to bed when they like, eat when they like and pretty much say what they like and challenge authority with little reproach. You are right, if my child acts up then it's automatically assumed that he's a spoiled brat and if he behaves very well and even more well-mannered than other children his age then he's not that autistic. It's a catch-22 really.