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Hi,

 

I just wanted to hear anyone's experience of family & friends reaction to diagnosis? From what I've read so far on the forum, there seems to be many of you that have received little or no support, like us. Our daughter was diagnosed with MD at 3. (Dec 2003). We consoled ourselves with the knowledge that we had close supportive family and friends. After the initial shock and horror, we felt we were basically left to get on with it. Felt very isolated and alone, and struggled to cope for at least 2 years. People who normally visited stopped, and made lame excuses, that went on for years.Infact my sister who I've always been very close to, didn't visit me for 2 years, saying she works full time, and we continually had to visit her, even though my hubby works very long hours??!!. We no longer speak to each other now. People who normally rang, do so less and less. We felt like it was up to us to always ring and always visit, while dealing with all the trauma of diagnosis , and eventually got sick of it and stopped. Then in November our daughter was diagnosed with autism. The relationships we had had broken down to such an extent we couldn't even bring ourselves to tell anyone, other than my mum. My hubby's family have become so distant that they still don't know. I sometimes feel if we've altered to such an extent we just don't have anything in common anymore, or if its hard for them to support us. I know if a close family member or friend of ours had gone thru this we would be totally there for them. What makes people behave in this way? I've seen sides to people I'm appalled by........its as if they are completely different to who I thought they were. We made a conscious effort not to burden anyone with our pain, and just tried to be there for each other. Do you think you alter as a person afterwards and family and friends cannot deal with it? Its a bizarre situation that we find ourselves in now...feel as if we are sat surrounded by the fall out of something awful, very much on our own, and not understanding why. Would welcome your thoughts.....

 

Take care,

 

Debs

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i feel like i'm on my own(except for u brilliant lot now)my family try to be supportive but i feel like they just dont fully understand,they always seem to be looking for the "normal things" my DD does especially my dad and my DD's dad who is still having problems dealing with it cuz he thinks its all his fault(had some of the traits when he was a child but never given a dx)we're not in a relationship anymore but he sees DD every ngt after work,he usually gets here in time to put her to bed etc and he sees her few hrs at weekends but he's never came to any appointments with me since this all began,if it wasn't for my older girls i probably would of cracked by now,especially my eldest,who by the way found out on friday she passed her final exam and will be qualified nurse this summer,REALLY proud of her :tearful::wub: she even did the "more than words programme"with me and gave up her time in between assignments and work.as for friends,some have been fine but dont see them often and the one i really thought was a good friend really upset me,she has a son same age as DD,i used to see them quite often but when i told her last nov specialist thought see was ASD i havn't heard from her since,maybe she thinks its contagious or something!!

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This is a topic that has been discussed quite a few time on this forum - as you have seen.

 

I have always been one of the first to say that family and friends appear to be the very last to take autsim on board and what it means, and I will stand by this. However I also feel that 'I' changed after the dx and I found having company and visitors was often a real trial and left 'me' feeling exhausted and usually praying that they would leave. I still feel like this unless it's company who also lives in a family with autism. Tomorrow I am having a support group committe meeting in my home (remembering that I also home ed) and I will not bat an eye lid if either of my two decide to throw a strop or say something totally inappropriate. There will be no raised eye brows and no tutting and shaking of heads. Better still not one of my new friends will ask 'Why are they doing that?'

 

So I now wonder did I have anything to do with my circle of friends changing? I think I did. I still find that relatives can be a total nightmare and do my best to avoid them coming :( I also think that it is very difficult for someone, even close family, to truly understand. Unless you live with it how can you. I thank God every day that I now have very good friends who are supportive and do not sit in judgement. Life is easier and as a family we are happier because somehow my sons also appear to be more relaxed and can now enjoy company :D

 

Oracle

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Hi,

 

I just wanted to hear anyone's experience of family & friends reaction to diagnosis? From what I've read so far on the forum, there seems to be many of you that have received little or no support, like us. Our daughter was diagnosed with MD at 3. (Dec 2003). We consoled ourselves with the knowledge that we had close supportive family and friends. After the initial shock and horror, we felt we were basically left to get on with it. Felt very isolated and alone, and struggled to cope for at least 2 years. People who normally visited stopped, and made lame excuses, that went on for years.Infact my sister who I've always been very close to, didn't visit me for 2 years, saying she works full time, and we continually had to visit her, even though my hubby works very long hours??!!. We no longer speak to each other now. People who normally rang, do so less and less. We felt like it was up to us to always ring and always visit, while dealing with all the trauma of diagnosis , and eventually got sick of it and stopped. Then in November our daughter was diagnosed with autism. The relationships we had had broken down to such an extent we couldn't even bring ourselves to tell anyone, other than my mum. My hubby's family have become so distant that they still don't know. I sometimes feel if we've altered to such an extent we just don't have anything in common anymore, or if its hard for them to support us. I know if a close family member or friend of ours had gone thru this we would be totally there for them. What makes people behave in this way? I've seen sides to people I'm appalled by........its as if they are completely different to who I thought they were. We made a conscious effort not to burden anyone with our pain, and just tried to be there for each other. Do you think you alter as a person afterwards and family and friends cannot deal with it? Its a bizarre situation that we find ourselves in now...feel as if we are sat surrounded by the fall out of something awful, very much on our own, and not understanding why. Would welcome your thoughts.....

 

Take care,

 

Debs

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I do empathize with you. I don?t have much time for my family as they always are critical with my parent skills always telling me I do things wrong , My son is a bully I give in to much. He is too fussy with food I could go on. . I get exhausted trying to educate my family with my son and ASD I asked my family to read a book by Mark Haddon. (The curious incident of the dog in the night) the book would help my family understand my son condition and I hoped they would be less critical. I have a large family and not one of my family members could be bothered to read it. I decided not to let any family member come around to my home, but I do make time once a month to go out to see them, Pictures or girl?s night out. I found this a good way to have a break and keep some sort of relationship with my family. I don?t talk to my mum, sisters or any other family members. About my family or my son. I don?t think they understand what it is like to bring up a child or children as they don?t live with it. Family member tend to get scared and try to pretend autism or ASD don?t exist how can they show empathy with something they don?t understand. Frustration level are high on both sides. I cope a little with the isolation by using this forum.

There is a saying that helped me. Those that matter don?t mind. Those that mind don?t matter.

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I have to say that my family treat me and A exactly as they always have and are brilliant. Having said this, I can see that A's autism came from my side of the family and that me and one of my brothers and one of my sisters clearly display traits, and that my father and grandfather when alive were clearly autistic, so they just accept A as he is and understand what is happening and so know how to deal with him. However, since we live over 100 miles away from them it really doesn't help very much.

 

My husband's family and his friends are very different. I often find myself very hurt by their comments and lack of understanding and I have to be honest and say that we have both distanced ourselves from them as they have revealed a total ignorance and lack of compassion and empathy. I could understand if their comments were based on A's behaviour or what they know of him, but they base their attacks on their incorrect understanding of what autism is and not the reality of what is facing them. Got to say that I'm not bothered that we are on our own, but I do feel sorry for my husband who is really far more social than I am.

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My family and friends have been great to be honest. I agree with Carole in that I feel I have changed to an extent, but my friends etc still come round and visit and family help out a lot.

 

They also are fairly critical though because although they accept Logan is autistic, they really haven't accepted the implications of it iyswim and have a long ways to go to understand it - but then I'm learning too. So I think I'd say emotionally there are some I can count on, but most I can't, but practically I could count on most, although Logan will only accept a few.

 

Lynne x

Edited by Lynden

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I have recently been thinking about this a lot. My eldest brother is an alcoholic, and I have given him a lot of time and support over the years. He also used to be a care assistant for adults with learning difficulties, including autism, so was the obvious person to expect support from. But unless we are talking about him, I can't have a conversation of any depths. Same with my mum, she doesn't want to have the conversation, and when I force the issue says that my son is 'just slow' and that there is nothing the matter with him (I'm pretty sure she thinks my parenting is the cause of his behaviour, and I would have probably agreed if I didn't have an elder NT child who is fine). My other brother seems to be scared that I might want to get emotional (god forbid), and so stonewalls me.

 

I had to give up my job a year ago to support my son's entry into school (I've worked full time for the past 20 years), and that was met with no comments, and no acknowledgement of the financial struggle that would mean. But of course that means that I am more available for running my family around to the shops, etc.

 

May Day weekend I decided that I had had enough of this one way street, and was going to ease off with them all, as if I can't get the emotional support that I need from them, then I would treat them more in the way that I do my fair weather friends.

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Thanks for your replies and comments :D Got to say that no one within our family and friends has said any negative about our daughter or us. Think i would go ballistic is they did... :angry::angry: I think for us its a general lack of care and effort. It's us who are expected to phone and visit, and now we've come to the end of the road and stopped, we just don't see or hear from them. Relationships which were once close, or no longer. Yet, I don't feel that we've been difficult to be around, or have wallowed in self pity, quite the opposite. During our hardest times we've listened to their problems and tried to be there for them, while struggling to cope ourselves. Simple things mean to so much....remembering her birthday, asking how an appointment went, making a little time to visit, just a basic human acknowledgement of what we are going thru.......rather than feeling we and our daughter are of no great importance. I'm still not sure if all this has come about because we've altered in a way that they don't like being around us, or that we are just unwilling to accept c~~p anymore. On another note, I've got to say that as a family unit we are at our most positive at the moment. We feel a great deal of peace, and life seems to be getting a little easier.

 

Take care,

 

Debs

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I haven't told our family yet, I don't know how to, whether I will be emotionally stable enough, I don't want to hear their reactions, or for them to feel sorry for us or talk behind our backs. In some ways I feel ashamed about it. My family just wouldn't react in the way I would want them to.

 

He will get to a point where it is obvious that he isn't ... sorry to use the term ... 'normal' and I will have to tell them.

 

Then they will say "ah we thought that there was something not quite right" or "oh well he'll get over it" or "could be worse" or something like that. They have heard of autism but dont know what it really is.

 

My sister has a 6 year old and always competes her child against mine ... she is p'd off cos my son can read far better than hers, and when anyone mentions how clever my little boy is she gets all protective. I bet she would love this diagnosis so she could say "oh well at least her son is normal" or something.

 

I always have to keep him away from them as much as possible, and other members of the family - a couple are teachers and I always wonder if they know or not. Nobody has ever said anything, but I am waiting for it to come up.

 

If I told everyone, I also think he would get isolated, people would fear "the unknown" and stop talking to him or talk to him like he was deaf. That he would go from "the super intelligent grandson they are so proud of" into the "cabbage in the corner" in their minds kind of thing. They will then give all their attention to my other son (who wins on the cute stakes because he is still a baby) and my other son will be left out.

 

I also feel guilty about keeping it a secret from them and when I do tell them they will be angry for me withholding this information.

 

At the end of the day, I just want everyone to love him as much as we do.

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My sister said my As son was the devil child

 

My mother once actually said wed have been better aborting.

 

My family get on my ###### wick where my son is concerened.They dont support me,or give us a break from him.And quiete frankly knowing how they think and feel means im reluctant to leave him with them unless absolutley an emergency.

 

I dont even discuss his problems any more with them.They dont give a toss.They all live close by but they might as well be a million miles away.

 

Ive a few very good freinds most of whom also have special need kids.

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Our daughter is 12 and only recently diagnosed - at the moment we've only told my parents/GP and the school.

 

My daughter doesn't want anyone to know so I can't ever imagine telling anyone else - I have one brother who I fell out with about 18months ago over his attitude towards my daughter (whom he saw as a badly behaved child) and probably other friends and family think the same as he does but just don't say.

 

Take care,

Jb

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We've had no negative comments, but a fair bit of trying to brush everything under the carpet. "Oh. he's fine, he's just slow to talk." "He's just being two." You get the picture.

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I tend to use the same criteria for family and friends as I do when answering parents who have kids who are being forced to do things at school that they are unhappy with. I ask ' What are they gaining from doing this?' It's a pretty good yard stick and although it is more difficult when it's family and friends then the same applies. Would we continue to hit ourselves with a big stick if it hurt everytime we did it? Probably not so why take the negative comments for your family and friends lying down. Or why continue to see them if it only make you feel :crying:

 

I have never been ashamed of my sons they are two unique individuals that have qualities that some 'normal' children and adults could all do with aquiring. I am actually very proud of my two because they work doubly hard to succeed at most things :D It's not all negative with autism. I find myself thanking god on a daily basis that my two are not attending the local Mainstream Comp or hanging around on corner ends drinking. When it come to being polite and having manners my two sons are probably the only two in the neighbourhood who have any. Yes it took a long time and a great deal of hard work and input to get to where we are now but we did it :D

 

I do have family members who accept my two warts and all and they are the very elderly uncles and aunts all now either in, or approaching their 80's, so it's not an age thing. My Mum has always been brilliant as was my Dad. My Hubby's family are another matter and I try very hard not to see that much of them. I remember reading a quote somewhere from an autistic person which was' We are not different you are all the same' I love it :thumbs:

 

If we invest in our children then we can make a big difference. If family and friends don't want to take part in that then it's their problem and if my sons gain nothing from them then why bother seeing them?

 

 

 

Oracle

Edited by oracle

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HI Bagpuss, since both my parents died I have had little or no support, I have found that people tend to either avoid contact with me or refuse to acknowledge that K has AS. A couple of months ago, my best friend and neighbour, who I have always considered to be the most caring understanding person I know, told me that she cannot be my friend anymore because K is too much like hard work, she also stopped her children, who have been friends with K since babyhood, from playing with K. She told another of my friends that she didnt want anything to do with me or K because, she believes that there is nothing wrong with K that a good hiding wouldnt cure!!! Apparently K hasnt got AS, I just use that as an excuse to let him get away with murder!! At first I was devastated, I couldnt believe that this woman who Id shared all my thoughts and fears with had turned on me and K in such an evil way, I thought I new her, I was so wrong! now I dont let her upset me or K now, the way I see it she is not worthy of walking in my sons shadow, and its her loss not mine!! :dance: Apart from my other friend H and my oldest son who is 21 in june, I get the biggest majority of support from this forum, when I joined a few weeks ago, I was at rock bottom, now I feel more able to cope and I wish Id come here sooner!! :thumbs::thumbs:

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Lizzie - your friend truly was :notworthy: of your friendship. I hope that one day she needs you and then you can repay her for the nasty way she treat you.

 

>:D<<'> Oracle

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Oh Lizzie, that is awful >:D<<'> >:D<<'> I just don't understand people sometimes :( Think you are such a strong person though to have dealt with this and moved on...well done :clap: She'll need you before you need her , thats for sure :D

 

>:D<<'> >:D<<'> >:D<<'>

 

Take care,

 

Debs :D

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My family are really supportive my dad has AS, self dx'd and he has alot of understanding for my son because he kinda is going thru the same as him..... We all have our moments and its hard and like most families we all fall out at times...

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Oh Lizzie, that is awful >:D<<'> >:D<<'> I just don't understand people sometimes :( Think you are such a strong person though to have dealt with this and moved on...well done :clap: She'll need you before you need her , thats for sure :D

 

>:D<<'> >:D<<'> >:D<<'>

 

Take care,

 

Debs :D

Yes your probably right she will need me 1st.................I cant wait to tell her to sling her hook!!!! :dance: Thanks Bagpuss for the support, it means a lot to me.XX

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Lizzie - your friend truly was :notworthy: of your friendship. I hope that one day she needs you and then you can repay her for the nasty way she treat you.

 

>:D<<'> Oracle

The way I see it Oracle, is that God doesnt pay his debts in money and she will suffer for the way she treated us, Im not so much bothered about myself, but she should be horse whipped for the despicable way she treated my son! What goes around, comes around!! Thanks for your support. xxx

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Dear All

 

When I was diagnosed, the only person who understood was my Mum. She had always thought that I could possibly have an Autistic Spectrum Disorder. She dealt with me correctly and loved me unconditionally. My Dad and other family members did not understand as I never used to interact with them.

 

When Mum told her friends about me, they didn't understand and they just said to my Mum, can't I change. Mum gave up talking about me in the end.

 

My Mum died 3 years ago and I had to adjust to living with Dad. I found it quite hard to begin with. He is not very easy to live with. I have adjusted very well. I can cope with being misunderstood by him, as I know that God understands me.

 

We support each other but there is no relationship. I would never sahre my difficulties and problems with him as he doesn't know how to communicate with me.

 

I do have a good network of friends at church who are very supportive and accept me unconditionally.

 

From Debbie

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Hi

 

We get alot of help from my parents. I had a very low point at Christmas time and my parents have now gone into overdrive to help us.

I have noticed that some of my friends don't phone me much anymore and even my hubby has noticed this. I also find it hard when they speak about their problems but I feel as though I can't speak about my son as they don't know what to say.

 

I have definately changed as a person. The majority of time i am a very strong person and i see what really matters in life now!

 

Forbsay

x

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I no longer have much to do with my extended family (cousins and the like) as they are quite simply not helpful to/for me. Just my Mum and close friends really.

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Ive found my parents fantastic and just treat my daughter as they do the others which is great. My mother in law is a different story, she feels i should get stricter! If my little one dosent eat give her meal again at tea time etc !!! Ive told her if i dont give my daughter something she likes she will literally starve herself! Basically i think she feels most of the behavior is my fault (not her precious sons by the way) Helen x

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