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FlorenceD

How did people in your lives react???

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I first discussed the possibility of me having an ASD with my GP over 2 years ago. Now things are getting out of control for me and I'm struggling more and more. I went back to the doctors last week and now might be getting somewhere with regards to getting a diagnosis.

 

So I was having a conversation with mum last night about my nephew who has Aspergers, this led nicely into me being able to tell mum whats been going on with me lately. I also discussed with her the possibility of me having ASD and that the doctors happy to go for diagnosis as it means I will get help and support which is much needed. Well my mums response was pretty hurtful tbh. She said that the child pyschologist we saw when I was 6 said that its 'middle child syndrome' and that they said theres nothing wrong with me. She then ignored what I was saying and changed the subject completely.

 

I wasn't expecting a great reaction from her but I at least thought she might be interested. Just feels as though she doesn't care, I also now know for sure that she's never going to understand me because she doesn't want to.

My sister said that for mum to admit to something would mean to admit she failed and she will never do that. It doesn't make me feel any better. It took me 2 years to say that out loud to her which was a huge deal for me and thats how she takes it.

 

How did the people around you take it? Were they supportive or in denial?

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I'm so sorry to hear this.

 


Well my mums response was pretty hurtful tbh. She said that the child pyschologist we saw when I was 6 said that its 'middle child syndrome' and that they said theres nothing wrong with me.

 

It was once common for psychologists to dismiss any concerns in this way, especially with girls. It still happens today, but with increasing awareness of the female AS presentation, I hope it's happening a lot less. There's no such thing as 'middle-child syndrome' and using the term is a poor excuse for doing nothing. It's a pity you are a middle child, for they'd have been unable to use it otherwise. Does it actually say this in your records, or could it just be your mum's interpretation of what may actually have been said? Obviously there was something 'wrong', for most middle children don't suffer from anything that could be called 'middle-child syndrome'. For those who do, the causes must be sought elsewhere.

Just feels as though she doesn't care, I also now know for sure that she's never going to understand me because she doesn't want to.

 

Exactly! She's in denial, and as you say, she doesn't want to understand you. I know of other parents who have reacted in this way. It's counterproductive and helps nobody. Unfortunately, I lost my own parents before my diagnosis, but I know that it would have come as a relief for them, for they always knew that I was 'fragile', but never knew why.

My sister said that for mum to admit to something would mean to admit she failed and she will never do that.

 

She could be right, for this is a common reaction. It comes from a lack of basic understanding of the condition, which is unconnected with poor parenting, but rather is genetic and unchangeable. It's not a personality disorder. Its cause isn't psychological, but neurological.

It doesn't make me feel any better. It took me 2 years to say that out loud to her which was a huge deal for me and thats how she takes it.

I'm sure it doesn't. It must be really upsetting, especially after waiting so long and finding it so difficult. Maybe if you showed her this post it would make her think, and change her attitude... or maybe not. If she has the kind of personality that isn't open to change then I suppose nothing would convince her.

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For once unfortunately I have something I can empathise with. My parents have also gone before diagnosis and know how stressful it can be getting misdiagnosed with other things that people throw at us when they don't know. Doctors said I would grow out of it and they just passed me off as badly behaved even though I begged them to tel me what I had done to upset them, later beleiced to be childhood seizure or other rocking. My new gf works in mental health and has helped me to accept my asperger and be at peace with myself. But the trips me up when I speak out of turn or struggle to listen to her or attempt humour, she barks at me and says im hiding behind my symptoms and I wonder if she even knows me or cares at all. It can be very frustrating I know. I'm hoping for family help with adult diagnosis so my esteemed journey into my own mind can be settled once and for all. I also hope that diagnosis will give some releif to the ones that care about me so they know I wasn't doing it on purposely and will help them to understand people like us better and love us for who we are no matter what. Good luck

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Also the bit about them not wanting to admit something might be wrong with us because it would mean they would have to either amdit in themselves or be at fault for treating us as poorly behaved.

 

So sorry to hear you have this issue too. I pray one day they can easily test another way

 

I heard they can now find traces of all infections we've ever had as there's some trace they can detect.

 

All the best you guys

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Thanks guys. It helps to make me feel a little better being able to make sense of things here. I'm still struggling alot with everything. I feel guilty as my sister said to me the other day that as mum isn't willing to accept there's anything wrong then she (my sister) feels responsible for me. We were talking about going on holiday abroad next year, I said I wasn't sure (fear of the unknown/lack of usual routine etc), she then said that she won't let me live my life like that and that shes going to help me get through life.

 

I guess if I went for diagnosis at least I know I can count on her for support. I feel so awful though relying on her as she has got so much to deal with in her own life.

 

I just hope that mum comes round eventually and realises that im not making this up and that my struggles are very real and that I need support.

 

Sorry for ranting. Just need to get it all out there!

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I'm sorry to hear about the situation your in and the responce of your mother when it took so long and so much effort to tell her only to have to deal with such a negative reaction.

People can sometimes underestimate how much support and help they can actually be without realising it, I felt that I was nothing but a burden to people and still have those moments if things are not going well that it is still the case and nothing has changed.

My girlfriend after a long talk explained the things I did that actually supported her and I didn't even know this was the case so you may find that you support your sister either emotionally or in some other practical way that you didn't see, it's hard sometimes when we can only see the problems but there are positive things we do that we just don't see but they are there, your sister obviously loves you a great deal so you enrich her life just by being in it for a start.

My father had passed to spirit when I was diagnosed and my mother is in her eighties and is not the same so I don't think she really understood what the condition was in anycase. She has always supported me so the diagnosis didn't make any difference I was still her son it's just a word she said nothing's changed.

From her point of view it didn't and if people saw past the word and seen us as individuals not the label we have then I believe the world would be a better place for it as there would be more individual free thinking people in it.

Obviously I don't know you or your mother and family situation but there can be many reasons people act as they do from not caring to being scared maybe she has her own problems she can't confide in anyone about and is in her own personal dilemma.

Nobody knows until somebody has the courage like you did to tell her and that was a big thing so you deserve that being acknowledged and you have taken the first step which is the hardest one to take.

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Its ok Florence, don't feel guilty. I do too sometimes but I make it up to my gf in other ways. She looks after me and I look after her. Swings and roundabouts I guess.

 

Not having family support is rubbish, but at least your sister is on side. Just love her and help her where you can.

 

As for holidays, they can be amazing!!! What I do is google the hotel and beach etc and find all the pics you can of the place so you can build your mental image. This greatly reduces my anxiety of the unknown

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Its ok Florence, don't feel guilty. I do too sometimes but I make it up to my gf in other ways. She looks after me and I look after her. Swings and roundabouts I guess.

Not having family support is rubbish, but at least your sister is on side. Just love her and help her where you can.

As for holidays, they can be amazing!!! What I do is google the hotel and beach etc and find all the pics you can of the place so you can build your mental image. This greatly reduces my anxiety of the unknown

That's not only a good idea concerning holidays it works when you have to go somewhere you haven't been before. I find out everything I can about a place beforehand decide on a route how to get there it doesn't stop the anxiety but helps a little.

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Good replies, Mr S & LL.

You're not ranting, Florence. You're lucky to have an understanding sister. It was my parents' hope that my brother would 'take care' of me after they'd gone. Even though I'm almost certain that he too had Asperger's, he could at least travel and organise his life a lot better than I can. Unfortunately, I lost them all. :(

If your mother does come round, it would make your life a lot easier, but if she doesn't it's not your problem, but hers. If you're sure a diagnosis would change her mind, then she shouldn't just assume that you don't have autism. She should at least accept the possibility and give you the benefit of the doubt. (I suppose that my logical brain working!) If you do get a diagnosis, I hope she apologises for all the stress she has caused. It seems so wrong that we should have to rely on 'professionals' before people change their attitudes towards us. What happened before such a diagnosis had even been thought of? Luckily for me, my parents accepted me for who I am, and didn't even suspect autism - but knew there was something 'fragile' about me.

Good luck, Florence - and don't ever give up...and don't feel guilty.

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Mihaela makes a very good point , I too find it very frustrating that people need a professional diagnosis before they consider there may be some understanding or exceptance of how we are. We are not a condition or a problem we are people with emotions and feelings and a lot of the time that appears to be forgotten. Some people discuss us like they would buying a car or deciding on a holiday I've heard it and experienced it so when some people say don't take things too personally I reject that totally, I except I may see things a bit different but that doesn't mean I am devoid of feelings have opinions and a right to express them that is also forgotten by some people.

When you consider the challenges we have sometimes I wonder how a so called NT would manage when faced with daily life as we do, would they be so quick to judge and pour criticism on us if they faced such a challenge.

You don't wish hardship or distress on others but can anyone understand unless they have experienced the same issues, that's most probably why so many people don't understand. At least I like to think so it would be awful if people just didn't care through choice but not understanding is slightly different even though that makes life just as difficult.

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Mihaela makes a very good point , I too find it very frustrating that people need a professional diagnosis before they consider there may be some understanding or exceptance of how we are. We are not a condition or a problem we are people with emotions and feelings and a lot of the time that appears to be forgotten. Some people discuss us like they would buying a car or deciding on a holiday I've heard it and experienced it so when some people say don't take things too personally I reject that totally, I except I may see things a bit different but that doesn't mean I am devoid of feelings have opinions and a right to express them that is also forgotten by some people.

When you consider the challenges we have sometimes I wonder how a so called NT would manage when faced with daily life as we do, would they be so quick to judge and pour criticism on us if they faced such a challenge.

You don't wish hardship or distress on others but can anyone understand unless they have experienced the same issues, that's most probably why so many people don't understand. At least I like to think so it would be awful if people just didn't care through choice but not understanding is slightly different even though that makes life just as difficult.

 

I too relate to this, I appear to not exibit much emotion but I do feel it.

 

ok so im not great at understanding my emotions, even less the emotions of others, but I do feel

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I too relate to this, I appear to not exibit much emotion but I do feel it.

 

ok so im not great at understanding my emotions, even less the emotions of others, but I do feel

I think that this is something that is little understood in the NT world and from experience most don't care even if they realise. Most wouldnt have the same responce to somebody who had a physical disability but they appear to give little thought or understanding to emotional issues we may have, another example of the lack of care in some people where autism is concerned.

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Talking of emotions, I cry a lot, and when under great stress even over the most trivial of things. Sometimes I cry out of frustration for all the needless suffering the state of the world. Sometimes I cry for no known reason - a feeling of loss sweeps over me, or a feeling of my 'smallness' in the world.

 

I find difficulty showing affection to humans, but not to animals. Putting my arm around somebody can seem unnatural, although I do do it when somebody is unhappy or upset. I'm never sure whether it's the right thing to do at the time, or how long I should do it for. Sometimes I may regret not having done it. It all really confuses me.

 

I find much of the emotion expressed by NT people as shallow and affected. Genuine emotion is the only type that I can understand and identify with. I can't understand how any caring parent would react negatively to their adult son or daughter having a diagnosis. It should come as a relief and a welcome explanation of why their child was always 'different'.

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Animals are so much easier because there is no judgment or preconceived ideas, they dont expect anything from you they are pleased to see you appreciate when you feed them smooth or cuddle them I like to think it's a honest behaviour.

People at least a lot of them are far from being honest and you can't know how they are going to react or what the right thing to do is in many cases everything you do is somehow wrong but when you do find somebody who is an equal that does become easier as confidence and trust grows.

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hi, I'm new here and have not posted before. My daughter and I are currently on the waiting list for assessment for aspergers (i'm in my thirties and my daughter is a pre teen) and I have recently realised that it's also incredibly likely that we are both bi polar as well. My friends have been pretty open minded and supportive about all this but my parents and partner- well, frankly It's a nightmare. I'm sorry that your mum isn't ready to deal with what you're saying, I agree with the comments above, I certainly know that's the case with my parents and partner, although my mother is starting to come round now and I know that she adores me even during a meltdown.

 

It's so tiring and frustrating and just horrible having to put up with your loved ones constant bewilderment and annoyance at everything you say and do, isn't it? you start thinking you're such a burden :0(

Mt Blanc, ditto to everything you said, isn't it a nightmare!

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Hi Skinnyweirdgirl, and welcome to to the forum! (I presume you're skinny and weird - like me. LOL)

My daughter and I are currently on the waiting list for assessment for aspergers (i'm in my thirties and my daughter is a pre teen) and I have recently realised that it's also incredibly likely that we are both bi polar as well.

 

I'd be very cautious about suspecting your daughter is bipolar (or even yourself). Of course, it's possible, and it quite commonly occurs with AS, but often the symptoms are misinterpreted as bipolar. Children at around puberty often have mood swings and this would seen as being within the normal range. Misdiagnoses of various kinds are only too common when a psychiatrist doesn't specialise in autism. I've had a lot of experience with adults who are bipolar - sectioned under the MHA many times. Witnessing full-blown manic episodes is very frightening and can be dangerous.

It's good that your friends accept and support you. My parents had seen me have many meltdowns over the years. They may not%2

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Grrr! It's done it again! Why are my posts doing this? :(

 

Luckily I'd saved the rest, after yesterday's wasted time on a post.

 

They may not have always handled them well, but unfortunately they never knew that I was autistic. They still loved me though, in spite of my difficulties and eccentricities. What are the main problems with your parents and partner?


It's so tiring and frustrating and just horrible having to put up with your loved ones constant bewilderment and annoyance at everything you say and do, isn't it? you start thinking you're such a burden.

At least if you got a diagnosis they wouldn't be able to blame you for the way you are. You're not a burden. They make you a burden by not accepting your 'difference'. Have you tried getting them to read up on the subject, although they'd need to have a willingness to learn.

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hi, I'm new here and have not posted before. My daughter and I are currently on the waiting list for assessment for aspergers (i'm in my thirties and my daughter is a pre teen) and I have recently realised that it's also incredibly likely that we are both bi polar as well. My friends have been pretty open minded and supportive about all this but my parents and partner- well, frankly It's a nightmare. I'm sorry that your mum isn't ready to deal with what you're saying, I agree with the comments above, I certainly know that's the case with my parents and partner, although my mother is starting to come round now and I know that she adores me even during a meltdown.

 

It's so tiring and frustrating and just horrible having to put up with your loved ones constant bewilderment and annoyance at everything you say and do, isn't it? you start thinking you're such a burden :0(

Mt Blanc, ditto to everything you said, isn't it a nightmare!

 

Hello and welcome to the site

 

Things can appear worse than they actually are but that isn't to say what you have said is not right, ive learned to try not to think ahead to much it is difficult I know and you cant always stop yourself as worry and fear of a situation is a natural part of being human.

Family can be quite thoughtless at times but in reality they don't always mean what they say or they may be having their own problems or struggling to see a loved one suffering and they don't know how to cope or what to do.

I don't think its an excuse but a reason as to why ive had that explained to me and it is a logical conclusion I don't always know what to do or how to react so its more than possible they could be reacting in a similar way.

I like people to try to understand me so in return I try to understand them, doesn't always work I know that from experience also but trying is the best we can do.

A quote from a film a will always remember was, theres no such thing as a perfect outcome, just perfect intentions. All we can do is try to do the best we can and except things wont always be how we need then to be.

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"A quote from a film a will always remember was, theres no such thing as a perfect outcome, just perfect intentions. All we can do is try to do the best we can and except things wont always be how we need then to be. "



I am going to keep this phrase in my mind, Livelife. I think it is very helpful...



At present I am struggling with whether to tell my family - only second degree relatives left alive now - or whether to just keep my diagnosis to myself. I read some advice, that said it is best to tell only those people who will have your interests in mind. None have shown that they have... in fact I rarely hear from them - despite efforts on my part to keep in contact with them. Somehow though, I feel that they should know we have Asperger's in the family.



May be that knowledge would make them more understanding.... or not!



I am finding this decision much harder to make than deciding whether to go for diagnosis or not.




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At present I am struggling with whether to tell my family - only second degree relatives left alive now - or whether to just keep my diagnosis to myself. I read some advice, that said it is best to tell only those people who will have your interests in mind. None have shown that they have... in fact I rarely hear from them - despite efforts on my part to keep in contact with them. Somehow though, I feel that they should know we have Asperger's in the family.

May be that knowledge would make them more understanding.... or not!

I am finding this decision much harder to make than deciding whether to go for diagnosis or not.

I asked the question here the other day about whether I should should tell my half brothers, who are 20 plus years older than me. For one, it may explain why he's always felt like the odd one out in the family (I'm sure he's NT). For the other, it's more because I don't reply to his calls, and I ought to, but don't know what to say to him. It's hard to not give a reason, but if I just say I don't feel up to it, that could lead to more pressure on me, or unfair worry for him.

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Confused Traveller...

I think the real problem is that Aspie's can never imagine how an NT will react. So the measure of what an NT reaction might be, will probably have to be based on their past behaviour... probably all we have to guide the decision of 'tell or not tell'.

 

As you rightly point out, there is also our own behaviour to consider. Sometimes our condition and the pressure of maintaining difficult family relationships causes us to retreat... it's normal for us to want to break contact if even for a short while, our minds demand it. But to the NT, breaking contact or not returning letters/e-mails/ phone-calls may seem like a snub. From experience I know that this earns the Aspie a 'reputation' within the family, and if the majority of the family think this way... no matter how rational and honest our explanation for our behaviour, my current thinking is that the prejudice is likely to prevail.

 

If another member of the family were diagnosed, I think it would make a difference. The existence of Asperger's would become a family problem and not just that of the one individual. It is scapegoating really, isn't it ? A harsh practice that I think most Aspie's will find very difficult to understand.

One has to hope that somewhere amongst family members there is at least one individual who is willing to understand Asperger's... though I have yet to identify that person in my own family.

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Well things are getting a little better for me at the moment. I don't really mention it at home except on occasion and I haven't spoken to my mum about it since our last conversation but I get the impression that she may be coming round to the idea that I may have ASD. Both my sisters seem to have accepted it so thats good I guess. My younger sister even seems to be showing some concern towards me which never happens.

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Glad that things are settling down for you FlorenceD.

 

I hope the situation continues to get better for you. :)

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Pleased things are improving for you.

 

In response to your original post.

 

My family have mixed views on how to 'deal with' my autism and other disabilities. Most of them blame me for my behaviour and criticise me in front of others.

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Pleased things are improving for you.

 

In response to your original post.

 

My family have mixed views on how to 'deal with' my autism and other disabilities. Most of them blame me for my behaviour and criticise me in front of others.

I know that feeling it's ok to be autistic as long as you behave like you don't have it, so much for understanding

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