How can I get through to my family?

[atlantis]

I’m having real trouble getting through to my family following my diagnosis. This is really hard for me, as I feel that right now I need all the support I can get.

 

The hardest part is that they’re simply not interested. If I bring up the subject they seem bored, practically rolling their eyes.

 

My brothers don’t live at home anymore so I don’t see them all the time, but usually they visit every week. One brother visited just after I got the diagnosis, and I told him and he was like ‘well I don’t even know what that is’, so I offered to explain and he just said ‘no, it’s alright’. He hasn’t been round since. I texted my other brother right away when I got the diagnosis, because I thought he’d react more supportively, but he never replied and hasn’t been round at all.

 

When I told my sister her reaction was literally just ‘oh, cool’, then she went back to her room to see her friends. The other day I tried to explain to her that I need someone to talk to, and asked her if she’d just been avoiding me because she didn’t know what to say and she got really mad at me. She shouted at me for accusing her of being a bad sister.

 

My Dad isn’t interested either. My mom tried to explain things to him, and I told him that right now I need to talk about it. He said that’s fine and immediately left the room and hasn’t mentioned it since… that was a week and a half ago. Even if I try to talk about it he changes the subject.

 

I guess my mom has been the best about it, but she still seems to avoid the subject. If I’m upset she assumes it’s because I’m upset about breaking up with my boyfriend. Outwardly, at least. I know she knows what’s wrong really, just doesn’t want to confront it.

 

That is hard too though- if there was anyone I could have talked to about this it would have been my (now-ex)boyfriend. I spoke to him for the last time the other day- the last time because he was bullying me about having Asperger’s, basically saying how ‘retarded’ I am and how glad he is to be rid of me and how I’ll never get anyone else because I’m such a freak. This was because I wouldn’t give him money. The good side of this is that it completely cut dead any feelings I ever had for him. But right now, I just miss having someone to talk to.

 

Is there any way I can get through to my family?

 

Sorry about the long essay…

 

Thanks,

 

_atLantis_

[baddad]

Hi Atlantis -

 

Sorry if this isn't what you want to hear, but I think the answer to your question is you probably can't 'get through' to your family. Either you are lucky enough to have a supportive, 'listening' network, or you're not, but having a dx won't suddenly turn the latter into the former. I am aware that sounds really negative, but realistically, if they seem bored and roll their eyes this soon after your dx they're unlikely to respond well to you trying to raise your support needs with them over the longer term. In your position, I would try to concentrate my efforts on speaking to people who are interested and - more importantly - who are qualified to help. That'll be the people who made the dx, and the services they represent and/or can refer you to. Over time, hopefully, that will be something that your family can 'link in' with, but if not that's sadly something you're going to have to accept and just try to work round.

 

Another 'tip': If mum is the one most likely to come good with practical support then that's where to look... but don't push it, and try to do it in a way that helps your mum feel she's got something constructive to offer rather than just being a shoulder to cry on or a vent for your frustration. She'll feel more useful, and therefore more likely to get involved, if you're asking for support she can deliver. Try talking to her with an objective in mind - maybe something like 'oh, mum, I'm seeing the people at CAMHS tomorrow can you help me organise some notes on my childhood development' or something like that. It is unfortunate that the family's not 'coming good' in the way you would hope, but the ###### of families is you gets what you're given, not what you would choose!

 

HTH

 

L&P

 

BD

[KezT]

giving it a ore positive slant:

 

it could be that they just need some time to deal with their own emotions about your dx. Families are`affected too, and most people need to work through things themselves before they can talk about it with others.

 

This is somehing that (I assumde) you have recognised in yourself for some while, yet you still need to "work through" the dx - for your family it may have been a complete surprise - you'd be amazed at how much families can ignore/deny LOL

 

Give them time - leave some leaflets lying around/the computer on the NAS page etc, but don't push it at the moment.

[Karen A]

Hi.

 

I do not have AS.I have one son who is 13 and has AS and a son who is 15.

Ben was diagnosed with AS a couple of years ago.

 

As parents my husband and myself try our best to support both of our lads but we often don't get the balance right.

Sometimes that is because we are stressed about other things.

Perhaps your parents have other things going on too.

 

When Ben was first diagnosed we were not sure how to handle it.We had known Ben might have AS for a few years.I had also been on the Forum for a few years and had read loads.However we still did not find it easy to know how to support Ben.

Even now Ben complains that I am not always helpful.

 

Ben's brother still does not find it easy having a brother who has AS.He wants to get on with things in his life.Although he is supportive Ben having AS is not a big deal for him because he has always known Ben as Ben.

It is very normal for sibblings not to get on well all of the time.

Perhaps your brothers and sisters don't know what to say.It might not even be the big deal for them as it is for you.

 

It sounds as though you are better off without your ex if he wants money from you.But it is still difficult.

 

It may take your family time to come to terms with your diagnosis.

I have worked very hard but to be completely honest I can't understand completely what it is like for Ben having AS because I don't have AS.Ben has learned more by reading about AS than he has from me.

He also really enjoyed litening to speakers who are adults with AS.

 

I would suggest reading some books about AS such as autobiographies.

Also read around here or elsewhere.

There may be a group for people in your age group who have AS in your area.

You could also look at the NAS web site as they have some helpful information for adults who have AS.

Have you been offered any support at all since your AS diagnosis ?

If you are at college there may be a group for students with AS or a disability or support available there.

It is difficult to find appropriate [or any] provision as a young adult with AS but it is worth investigating.

 

There are groups and courses for parents of children with AS who are newly diagnosed.

NAS also has a course for sibblings.However almost all of the provision is for those with children diagnosed at age under eighteen.There is very little available for parents or sibblings of people diagnosed as adults

Unfortunately once people are beyond the scope of CAMHS provision is very limited.

It may be a case of you needing to explore avenues for support outside of your family just because that is all that is available unless you have significant care needs that your family are helping with.

 

 

Karen.

Edited July 30, 2011 by Karen A

[atlantis]

Hi

 

Thanks for the replies- you raise some good points

 

I suppose what's making it so problematic is that they usually ARE supportive. It just seems that now it's something they don't understand, they don't want to know. It's frustrating because I've been there for them so much in the past- even though I'm not that great on giving advice, just listening to their problems and doing favors to help makes things go more smoothly for them.

 

Unfortunately there isn't much help available to me in my area at the moment- only groups for parents of young children. But when I go back to uni there should be a better support network (I had my diagnosis in my uni city). It's just that I've got 2 more months 'til I go back, and for the moment I'm stuck here with only my family for company. The dx has really got me down, I feel like I'm at breaking point.

 

_atLantis_

[darkshine]

Hi

 

Thanks for the replies- you raise some good points

 

I suppose what's making it so problematic is that they usually ARE supportive. It just seems that now it's something they don't understand, they don't want to know. It's frustrating because I've been there for them so much in the past- even though I'm not that great on giving advice, just listening to their problems and doing favors to help makes things go more smoothly for them.

 

Unfortunately there isn't much help available to me in my area at the moment- only groups for parents of young children. But when I go back to uni there should be a better support network (I had my diagnosis in my uni city). It's just that I've got 2 more months 'til I go back, and for the moment I'm stuck here with only my family for company. The dx has really got me down, I feel like I'm at breaking point.

 

_atLantis_

hi atlantis, dx is a really confusing time (so is afterwards but not in the same way) there's a lot of things to think about and process and a hell of a lot of information to digest so go easy on yourself and ride out this hard bit.

 

I can't talk to my family either, partly my fault partly theirs - when I mention anything at all to my parents my mum goes into guilt mode (hers but aimed at me til I have to tell her for weeks on end that everything will be alright when I don't think so) and my dad goes into denial mode ("there's nothing wrong with you" etc etc)

 

I have brothers and sisters but the sisters just do not talk about anything less than perfect ever (tried before with mental health stuff and depression got nowhere - just don't see the point) and my brothers, well, one's worse than me and the other's depressed - so enough cr4p to deal with without mine

 

Take the time to come to terms with it, I'm sure I read somewhere that there's leaflets available that explain AS so when your ready to do so, consider distributing a few and seeing what happens.

 

Unfortunately it may be the case that you might not ever get through to your family - but it'll be a lot easier if you understand it all first everyone's different but for me, when I finally approach the rest of my family it won't be the softly softly approach, it'll be wham, here's the info, wham, leave 'em to read and then any who don't contact me will get a phone call or email..... (but that's just cuz I've lived all my life never being allowed to say what I think to them, this time cuz its about me and my life, I will be doing it my way)

 

It'll get better in time

 

Darkshine

[philipo]

Now you have a dx then give yourself and your family some time to understand.If you think about it then work out some areas in your life that can be understood more clearly and think about suggestions/ways that you can get your family to relate to your experineces of as/asd.Time is the key and being patient is very hard.Confrontational stuff won't help.Just do it bit by bit because its important that your family understand ,not just for you but for others they may meet /know with the 'condition.being angry and confrontational will encourage them to be defensive and interpret your as/asd as a menta' health problem .I was so ppsssd offf at 48 getting dx'd and very angry at my family for treating me as a non specific nutter for years,but its not their 'fault',it just is,and as they are becoming aware of as/asd it brings out feelings of anger/blame in them that are directed at the nhs.i try to reassure them that the subject of as/asd in in its early stages and that it's not just been hell for me being undiagnosed,as we've had to acknowledge/examine the implications for my kids,one of whom is clearly on the as/asd spectrum,

Keep happy and don't try to force people to understand,after all a lot of people are too thick!!!!