My Sister Has Aspergers And We Need Advice.

My sister who is 46 years old. She was diagnosed as a child as autistic but gradually symptoms faded somewhat and we moved to another country and it was really not focused on any more, it was sort of the elephant in the room and my parents tried to have her seen by psycologists in her teen years, but she refused to speak to the psycologist. She seemed to adapt somewhat to school and gain an education, that said she has always struggled with depression and anxiety and she clearly sees herself as different, but has never officially been diagnosed with AS. There is reluctance in Canada to assign labels to people so she may never actually get a diagnosis unless she pays for it.She has done online tests that state that she does have AS. To me, her brother, and our mother she fits the description of AS in every way. This said she did have a diagnosis by 3 doctors in the late 60’s and early 70’s with autism in England. As I read about Aspergers traits it is as if I am reading about my sister, it is surreal actually that she fits this picture so completely.

My dilemma is I see my sisters struggle and I see her not being well treated for depression and anxiety and I see what is clear to me as many Aspergers symptoms. When pointed out to her she is always somewhat defensive. She will reluctantly say “yes I think I have Aspergers” but then immediately state that “ the effects are minor and it does not affect me that much”. She views it as a defect and I think she is ashamed of having Aspergers. For me understanding her as someone with Aspergers explains so many things, so many conflicts in the family over the past 40+ years. So often the conflicts can be rooted in her not getting the full picture or the true meaning of a conversation, but being adamant that her recollection was correct and arguing that it is correct and that others are stupid and wrong. I felt excited at finally understanding what it was that had caused all of these things and I truly expected my sister to embrace this understanding and gain from the massive amount of information on Aspergers. I hoped that she would be able to connect with others with Aspergers and realize she is not alone in this.
What has happened however she is has essentially done nothing at all. She denies the impact on her at every moment (while still acknowledging she does have it). She won’t go to an Aspergers support group that I offered to go with her to. I feel strongly that her depression and anxiety are related to her Aspergers and the answer to coping with these is rooted in her learning to cope with having Aspergers. She rejects the idea at ever point all the while struggling with untreated/poorly treated depression and anxiety and essentially concealing her true self from doctors. By that I mean my sister has a personality that is reserved for family and is truly who she is, she also has a facade that she present to the outside world that is less Asperger like and go through the motions of small talk and eye contact etc. She can’t maintain this long and it is draining for her, but she is a fairly good actor and pulls it off at most doctor’s appointments. It is so difficult to see her self destructing, she has isolated herself more and more and has gained so much weight that she would be in the severely obese range, this impacts her breathing and the joints in her knees.

It tears me up inside to see her decline, I often leave a visit with her and cry, I truly fear that she will die. It has never been this bad. For those of you that have Aspergers and have used support systems and treatments what advice would you give to my sister? I will share the advice with her and she tends to really listen to what others have to say.

Zenny123 Zenny123
46-50, M
5 Responses May 4, 2012

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I think the more we focus on someone and their 'disability' the more we isolate them. Not all are the same.
Within many lies an intelligence to see that underneath it all, as a human race we are all equal and all have that intrinsic worth. And your sister might well understand this and see it as hurtful to be seen as if there is something 'wrong' with her in regards to the greater world.
As far as masks go, the whole world wears them, the one who has had it pointed out to them that they are different, will be more aware of it and become exhausted by it. For she is really actually catering to a greater world that does want those masks.
I think the isolation comes from being aware of some very real realities, the reality that the world likes a very linear construct. and that anything falling outside of it should change to cope or fit.
I just think she might be ultra sensitive to some stark realities and not so keen on accepting faults of society.

That is an old post May 2012. I need to update you. In May 2013, my sister was formally diagnosed with autism, not even aspergers. She is no longer depressed, she is on permanent disability and her live has improved. i disagree that identifying someone as disabled is isolating. It can also be liberating. Now my sister educates others about what she has and explains why she is different. Yes I think there was reluctance to accept the diagnosis early on, but she was not managing before. Having a clear diagnosis has helped VERY much. We have discovered that much of her anxiety and depression was rooted in her Executive Functioning disability, which is a huge part of Autism Spectrum disorders. Once diagnosed and explored help can be offered to improving her function in those areas to allow her to gain better control of her life. Ignorance of these deficits did no one any good and honestly was abuse of my sister for years. When the real root of her anxiety and depression was not known, doctors threw different medications at her and, no big surprise, ALL FAILED. The impact of 7 different trails of medication on her body were far more traumatic than a diagnosis of Autism has been.

That is such good news. Definitely found the right help. And I hope within this, society at large can see that having disabilities is a normal part of life.
Which hopefully she is able to now teach. :)

Hi Zenny, your post is so uncannily close to my own experience that I am almost tempted to out you online as part of my own family: even the timeframe, and the years in Canada and England, are the same. I am very moved by your dedication to finding support for your sister. I must say that as the younger sister of an undiagnosed Aspie woman, I have no such open channel of communication with my sister as you do. Partly this is due to the fact that I live far away and have a busy family and career of my own now, but it is also due to long entrenched communication difficulties with her and in my family. The culture of denial you speak of has been a culture my whole family has subscribed to, except for my oldest brother. Like you, he is quite dedicated to trying to get help for her and to connect with her, and I am awed by his patient dedication and persistence. But as the younger sibling, I have often been completely dismissed by my AS sister. All my life I bore the brunt of her scorn and her inappropriate comments and reactions, and I find the work of breaking years of communication barriers--in fact of building relationship which has never exists between us--almost insurmountable. I love her, and I think she knows that. But she has shut me out her whole life or else put me down, and when we were younger and she was bigger than I was she was physically abusive to me in a way they went far beyond normal sibling rivalry or comradely hazing. Now I face a family situation that is getting even more complicated as my parents age (one has cancer) and she is still financially and emotionally dependent on them. I feel it's time to start really talking, really getting help, but like you I see the challenges her as unnavigable. She will not admit she needs help. Part of the AS pattern of a lack of empathy has meant that she has not been a low to see effect she has had on the whole family her whole life. I would truly like to know if you have made any progress with your sibling since this last post. I would also like to ,now how you have cultivated this open communication with your AS sibling, which is so admirable. As you say, there have been so many family blow ups in the past, and AS siblings have major anger issues. I am so keen to keep the peace that I am often afraid to start any kind do the communication you seem to display with your sibling, for fear it will explode back on me. I am convicted that this anger pattern is part of what keeps the culture of denial going in the family. I am also loathe to open channels of communication because the way my sister sees herself is as a long term victim of the world. It is clear to me that she often elicits from others the poor treatment she receives, if only because she makes poor social choices, cannot understand complex relationships, and often pushes people away with her relentless and solicitous pursuit of their friendship. So I often find myself listening to her stories but unable to comment: she has always bristled at advice from me, her younger sister, and sees the world in such a rigid way.

I would suggest that many of the things you have viewed as scorn and negative opinions from your sister are actually not at all. She simply lacks the ability to read any body language or tone in voice that gives clues to how people think and she likely make statements that seem insensitive. she is not actually insensitive, she just has no ability to understand things you take for granted. Likely her perspective is that she is just engaging in what she thinks is a normal way, and people unexpectedly react in a negative way towards her. This is in fact what it is like for many. So there is negative feelings on both sides but for different reasons. It is like she has offended you, but has NO idea why or that you are offended, all she perceives is your negative response that appears to come from no where. I fully understand why she see's herself as a victim. It would be like if you went to another culture and acted in the way you have always been raised and feel is polite, but you broke some rule of that society and everyone now viewed you as a trouble causer. You would have no idea why they reacted negatively to you, but you know they don't like you. This is what it is like for your sister. The reality is unlike the different culture you can learn the rules, it is impossible for the person with Aspergers to learn the rules. They are blind to most of the cues we use, it is a foolish as expecting a blind person to look out the window and know the weather that day.

Thanks Zenny. You are wise. This is probably true. But how do you cross this cultural divide so far as you have to engage your sibling in discussions about their Aspergers traits? I don't think I could ever go there. You seem to have miraculously maintained or built excellent communication with this sibling.

I suggest that you read first hand accounts from people with AS and learn what it is like for them as best as you can. When you have an understanding of that, I suggest you reach out to your sister and tell her, before I never understood, I have read such and such and now I feel I understand more what it is like for you. Can we talk more often? I want to have you in my life. It is sometimes useful to say, I don't want Aspergers to get in the way of us getting along. Use what you learn to better communicate. Stop using the non verbal things and the sarcasm. Talk in clear ways that you would use with someone who had learned English as a second language. Be clear, be calm, don't react in a negative way. Ask her what she means when she says something you might not like or don't understand. You will be surprised at how she understands what she is saying. Good luck.

Dear Zenny:

Hope you don't mind a response from another sib, rather than someone who has AS and/or has used support systems and treatment. I'm just writing as someone who shares your suffering on behalf of your sib.

My brothers, let's call them Dan and Matt, are 6 and 7 years younger than me respectively. I'm 56 (NT), Dan is 50 (AS), and Matt is 49 (NT). Our Dad died in 1998 and our Mom in 2001. I went online and "diagnosed" Dan with AS because of his odd behavior while my Mom was dying (actually, he'd been "different" since birth, but after my Mom's death, I HAD to try to figure out what was going on.) Dan was finally! diagnosed with AS 3 years ago. He didn't tell Matt or I; I found out this past summer (2012) when I saw a book about AS in his closet (not snooping, our family is very big on personal privacy) and told him straight up I had seen the book and wondered if he had been diagnosed.

Like you, both in 2001 and 2012, I was very excited to know what was going on. Shared what I knew both times with Matt -- in 2001, he more or less thought I was spending too much time on the Internet, but in 2012, I was very excited that he now accepts the AS diagnosis. Also, I was very excited that Matt now seems even more concerned than I about Dan's visibly deteriorating social skills, lack of motivation to do ANYthing besides watch TV when he's not working, unhealthy obsessions (Russian/Ukrainian women, even brought one over on a fiancee visa, which ended VERY badly), etc.

However, Dan doesn't seem at all interested in his diagnosis or getting support or talking about AS. Probably to be expected, as it came so late in life, and also because he tends to discard info that doesn't fit into his mindset, and actually acting on ideas isn't one of his strengths. I am so sad about this, I was really hoping we had found some common ground and that now that we all three know Dan has AS, Matt and I can build a better relationship. Perhaps it just isn't in the nature of people with AS to change. Could I dare hope that he's happy the way he is? Matt and I don't believe he could possibly be happy, but is that just projecting our own value systems on Dan?

Please share your thoughts, both Zeppy and anyone else.

Best, "Joanne"

I think the challenge is with each and every realization of an AS symptom the person with AS must endure a challenge to their self esteem. It is a vicious circle, without the realization they continue to alienate and not form meaningful relationships, but then with the realization they have to come to terms with understanding , for example that the 7 family conflicts in the last 10 years have likely been a result of the AS diagnosis and their different perception of the world. It is not easy for them to accept their difference. Some don’t and direct the responsibility and fault on to others, they never grow, and never gain insight. Others can grow and learn to manage and adapt and gain better understanding. My sister has learned a number of significant issues and how she can better navigate these. It may be easier for your brother to not face his AS, if he manages and his world is acceptable to him then why would he?

Dear Zenny:

Thank you for replying; I think all of your posts are very thoughtful, which is why I first responded. You really "get it"!

Your reply is very insightful. When I learned that my brother sought out and received a Dx of AS three years ago, I realize that I expected the light to come shining down, scales to fall from our eyes, trumpets to sound, and someone to start singing Handel's Hallelujah Chorus! :-) But that's me, not him, and nothing changes if nothing changes, right?

As an adult, Dan tried to gain self-esteem through his career (he has an MBA, a CPA, etc.) -- his job titles and his salary. However, he couldn't hold a job in small or large corporations for very long, and has since turned to academia as adjunct faculty. I was thrilled -- someone along the line had told him that 1. he shouldn't be in the corporate world and 2. he should never hold a supervisory position. But recently, I asked him which he preferred, the corporate world or the academic world. He said the academic world is more work and pays less!!! OMG -- I wanted so much for him to be happy in his new career -- the routine of teaching courses he's already taught, no office politices, pretty easy hours, no crises, plus professors don't get fired for being quirky or brutally honest (i.e., rude, curt , and condescending!

I've been beating myself up about not raising the whole AS question when I first suspected it in 2001, b/c most of what I'd read seems to support not keeping the Dx from the sibling. Perhaps Dan could have made some changes 11 years ago that he can't make now. But I will pursue getting my other brother to push a little for the social stuff -- I've taken some encouragement from your posts and others' replies that positive change can occur. As the oldest in the family, and the only sis, I can't help but feel some responsibility for Dan's happiness. I just don't think he's happy or feels like a productive member of society, although I know I'm using my own value system for defining happiness.

Again, thanks for your insights, and here's to a Happier New Year -- there's always hope, right?

Best, Joanne

I feel like what you wrote could have been said about me. <br />
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Firstly, is your sister is an Aspie, then is she hyper sensitive to noise and such- for instance lights, even dim ones hurt her? Or hypo and not responsive to things? That is VERY important to know. If she is hyper, very very low doses of meds can be ok for her, but "normal" doses can harm her and make her worse. <br />
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Aspies tend to wear masks - and very convincing ones at that. But yes, they take their toll. Have you considered your sister may be stimming orally with food? Most stims are frowned upon and aspies tend to quit doing the healthy ones in favor of more socially appropriate, yet with huge unhealthy consequences. Like eating and nail biting.. did you know that aspies need to stim when happy too? If you suppress your happy stims you are more prone to depression.<br />
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Three years ago my boyfriend asked if I was autistic. I rejected that so fast his head could have spun. But then I started seeing it... and ooooh it was hard to accept... now not only do I accept it, I talk about it, embrace it and try to raise awareness about it. I am still trying to get an official diagnosis - but I KNOW I am an aspie. It was truly liberating and life changing the moment I accepted and saw it.<br />
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Two years ago I was morbidly obese. I STILL want to stim with food - and fail most days. I lost 100 lbs and have regained 20 lbs now. I am off all meds now, instead to help with depression I use Himalayan salt - look it up, incredible stuff! I don't tend to get bad depressions anymore, just lows.<br />
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I have begun stimming again. I no longer care what people think when I do it. Until I learned all I could about AS I rejected how much it affected my life. Unfortunately, you can't force your sis to accept it. it took me over a year to fully become aware of the similarities in myself. Just keep talking with her and pointing out the things she does - you may tick her off, but one day the light bulb may go off. <br />
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I didn't like being an aspie either - now I have done a complete turn around on it. It can happen, so don't lose hope :)

"Firstly, is your sister is an Aspie" - sorry should be IF there

Thank you for your post, this is very helpful. I will share it with her. I still hope to have her come online and come to EP, so far her response has been.. Why would I waste my time talking to people I don't know? Thanks again.

She dislikes sounds and crowds. I think light bothers her sometimes as well, but not sure. I will share this response with her and see what she says.

That sensitivity can lead to sensory overload - it is quite awful. Google it - there are things she can do to help it. Maybe not eliminate it, but make it take longer to set in. It is one of the worst things for me. Once I learned about it - it enabled me to improve my quality of life :) .. next time your sis tells you about talking to people she don't know... maybe she doesn't realize that communication through writing is soooo much easier... her world can blossom online... mine sure did. If ever you get her to come to EP - tell her she can contact me... maybe it would help her if she knew there is someone like her out there :)

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