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Adult Brother with undiagnosed Aspergers?
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Adult Brother with undiagnosed Aspergers?

I have a brother, who is 52 years old. He was never diagnosed when he was tested because at that point, aspergers had not made it to the USA. It's been the proverbial "white elephant" in the room with our family as we've all been afraid to hurt his feelings by telling him....after it came to our attention from a friend of mine who is an administrator in education and met my brother.

Anyway, I took the plunge and just told him an hour ago. I told him that I've been researching it for some time. He seemed happy that I said something though I know that once he thinks about it, he will be upset...and clearly told him that he will probably be upset with me but that's a risk I am willing to take.

He has been without work for over a year now. He used to drive trucks with his CDL B drivers license but was let go from the last company for taking too long. In addition, he has type 2 diabetes and was living alone for some time. We recently were able to convince him to move to Florida where I live and my parents will eventually relocate.

I am writing for many reasons...where do we start? I figure he needs to be diagnosed. Are there benefits out there for people with this condition? Where can we get assistance? I want to make sure he gets the best support necessary since my parents will not be around much longer and it will be up to me to keep an eye on him. I took the plunge and broke the ice now I need to know what to do next. He is staying in south west Florida near me (Naples) and this is a good time for me to get things rolling. Any kind assistance would be so appreciated.
Vince
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347888_tn?1239903054
I don't know how much I can help you, but I think telling your brother was a good idea.  He probably knows he is "different", and having a reason why may make things a little easier for him, and your family, by being able to accept him & his differences.  I do not know about financial help for an adult with Aspergers.  Maybe they are eligible for some type of disability?  I would like to know that myself, as I have an 11 year old Aspie daugther who will be an adult in the near future, and, of course, I worry about her being able to support herself.  Let us know how things are going.
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Avatar_f_tn
you are wonderful to go the distance for your brother, and yes there are several benifits to having aspergers
i have lived with the positives and negatives of this for a long time
i will list a few negs....
1. some people may see me as odd, because i have a very blunt and practical approach to life
2. it is impossible for me to lie to someone, for instance i cannot feed people the stuff that sometimes friends need to hear, like no your husband is not a butthead, and no that dress looks fine on you
3. i see things my way and it is difficult to place myself in others shoes
now for something possitive
1. when i set my mind to something i get it done, thats how i bought my house, finished 4th in my class (paramedic), married who i wanted to, started homeschooling my aspie son, becoming room mom, joining a roller derby team, helping others in the communitte
2. aspie's get all obsessed about things, once we start a project we will finish come hell or high water
3. aspie is more of a learning disibility than a mental illness, so we can function in the real world most times without medication
so i could go on, but i havent the time, your brother needs help finding an outlet, sometimes adults with asp. can turn to drugs or alcohol to feel normal, but once they are re-directed to something positive to obsess about their life becomes manageable again
your brother will make it with your help, find out what he is interested in, a sport or a different vocational field,
aspie people think outside the box, therefore they are not bound by any limitations
you are probably going to have to get him out of his box/ self made prison
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Avatar_n_tn
Hello Vincent, I was sorry to hear your truck driving brother had lost his job as he was proberbly happily obessessed with his trucks and concientous and had no idea this was taken for 'slowness'. My boyfriend of 8 years is also a undiagnosed aspie and obessess about trucks in all shape, forms, in books, mags, tapes, DVD's also the railways plus he has a vast collection of models etc.,. You might be able to help your brother to redirect his life into that kind of work again or something else that fires him up. My boyfriend is 'hardwork' and selfish has like your brother lived on his own. His family 'know' there is something but even his well educated father have never confided in me that 'he' is diffirent. He knows hes diffirent and says he is but he doesn't know why or in what why. Everything has to be explained to him, and he doesn't seem to learn from one time to the next. So we go over old ground. Hes clever, has a wonderful head for figures, movements, names, number plates, phone numbers, but all that doesn't really help him in social situations. The aspie doesn't aim anything at the connected partner personally it seems but is intent on getting his own way and cannot moderate touch, strength, behaviour, habits and has to be told 'how it is' and what they can and cannot do. I will stop here and hope this posts to you.
Prairie52
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Avatar_f_tn
My brother is 59 and has Aspergers's Syndrome. I am two years younger and I understand very well what you are saying. Years ago, I got my brother to go to a psychologist that I was seeing regarding self-image and anger issues. The doctor told me later that he felt my brother had Aspergers. I began researching it like mad. I had already done a lot of research on ADD because both of my kids and I have it and I also felt my brother had it too but he fits  the description of Aspergers very well. When he was in the 3rd grade, he began methodically reading the encyclopedia and when he got to the F volume he became very upset because it was missing. He is extremely bright in some ways and clueless in others. My father died at 50 over 35 years ago now and my mom is in assisted living with alzheimers disease. It is very difficult for her to talk. She went into assisted living last August and my brother has not been to see her or call her since he was there to see her place after the move. My family and I along with my mom are the only ones he has and it is overwhelming to be the responsible caretaker for both of them. My brother still lives in mom's house which we will need to sell this Spring to use for her care eventually but I am dreading it. I need to help him find a place to live. I can only do so much because he has a mind of his own, a lot of anger issues with me and my mom about past issues. He has always lived at home and there is no agency or organization  or church there to help. The psychologist does not see any point in telling him he has Aspergers and I disagree but I have been to chicken to do what you did. I have a fear that it will make things worse. The  rooms he occupies in the house, (four bedroom split level - big house)  plus the garage are wall-to-wall stuff/junk. I could go on and on. I saw  your message on the Internet and thought "finally! someone who knows and understands what I am going through! Sometimes I despair at the prospects for his future. He has a job which he will probably be able to retire from in about 3 or 4 years. My brother also has Type 2 diabetes as do I. I have been told it is the Scandinavian heritage that is the factor for us. He does not eat properly at all though I think he believes he does. Would you ever consider corresponding by e-mail? Librarian69
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Avatar_n_tn
It's amazing to read your comments - I have a 49 year old brother whose story is so similar...
He's always had a hard time making and/or keeping friendships, and has had very few romantic relationships - he can strike up a connection  because he's very talkative and knowledgeable about topics that he cares about, but he alienates people quickly with his odd behavior.
He was somewhat functional and independent in his 20's and 30's, but right around 40, he got laid off from a job that he liked and has never been the same. He moved back in with our parents and things have just gone down hill since then. He hasn't had steady work in years, has no friends, has nothing really to call his own...
My parents have the resources to just throw money at the problem - they are retired and now live in Florida most of the year, leaving him to take care of their house in our hometown, and sort of leaving me to take care of him, which is very stressful because he's not all that pleasant to be around. He interrupts, talks too loud, doesn't understand most types of humor or the subtle meanings in most interactions. And he's really, really messy and unorganized - except for whatever new hobby he's obsessed with. It's like dealing with a 12 year old who ignores most everything you say.
I've tried over the years to talk to him - to suggest therapy, work resources, social outlets, but to no avail. I am now getting increasingly worried for the future - I will of course take care of him when the times comes that our parents no longer can, but I don't really know how I will handle it...
It sound terrible, but he's so clueless and inconsiderate that it's hard to be around him for very long - and that makes me so sad. I try to deal with him on his level - but all he really does is take...
I do think that he has Asperger's, and it's actually helping me handle the situation better, but I haven't talked to him about yet (if I ever do). I think I need to find a support group/therapist for me first and then go on from there. Finding resources for this problem in older adults has not proven to be very easy.
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Avatar_n_tn
Hi Vince,

Your post was very interesting to me as I have a 48 year old brother that lives in the Louisville area and this describes my brother's case almost exactly. I thought one of my brothers may have posted it.
We also are desperate to find some help and a possible support group in the Louisville area. We can find only children info and young adults sites. If you hear of anything I would appreciate hearing from you.
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470168_tn?1237474845
As every adult is going to need help with different things, this is a list that might be of some help.
Contact the USA equivalent to the Job Centre.  Find out what help they have getting disabled people into work.  Tell them that you suspect the family member has Aspergers and ask if they need a diagnosis to get access to any of the help or support that can be provided towards getting a job.  In the UK people with disabilities are supported into work.  The Job Centre will give details to the employer about things they are good at, things they struggle with etc - so the employer is fully aware of any issues.  So if they tend to go slow that issue would already have been discussed.
Get in touch with the USA equivalent of Social Services to find out about housing, supported living etc that is available.  Again ask about Aspergers and whether someone needs a diagnosis.  Also ask them about care in the house - they may get help with cleaning/shopping/meals etc.
Get a benefits check.  In the UK there is an agency you can go to who will check your circumstances to see if you are eligible.  Again, ask them if a diagnosis is going to be useful.  
I suspect that it will be alot easier with a diagnosis because, it is typical of someone with Aspergers that they will be brilliant at something like quantum physics - but cannot cook a meal.  
My personal opinion is that it is helpful for it to be on their records as a diagnosis because when parents are dead, any agencies that come into contact with that person will be aware of what the issues maybe.  And as they get older themselves they will possibily need health care, or an operation, or may need to go into a nursing home etc and knowledge of their diagnosis should be helpful in professionals making the right decision.
You can also write up a Care Plan which you can register with a solicitor who will represent your sibling.  In it you will make your wishes clear (but please make sure your wishes tie in with the siblings wishes).  Then a solicitor can be involved when needed.  Speak to a solicitor who has experience of special needs, particularly autism/aspergers - there are some out there.
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Avatar_m_tn
I am 39 about to turn 40 and I think I may have asperger's. I live alone, have only one friend, never dated, can't hold a conversation with anyone, very intelligent but am completely isolated from people. I hate changes, very anxious and paranoid when things change, can't understand what people mean when they talk to me (if joke, serious, etc). When I am in a car with someone I rarely if ever speak...I am too busy looking around...even when driving I am committed to the road and my thoughts are constantly changing. I become obsessed when I do meet someone I would like to become friends with and quickly loose them. I want to go get tested but am afraid that being diagnosed with aspergers or something else will prevent me from working. Every job I get I loose because of social interactions...no complaints  about doing my job just my interactions with people. I know I can't keep on like this but am anxious about taking the step to get tested. Even with family I can sit for hours in the room with them and never say a word. I have difficulty when alot of people are around...I NEVER join in on conversations...never know what to say. I just don't know. Am I one or not.... I am at my wits end with all of this.
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Avatar_m_tn
If he's interested in reading articles on the web, suggest this one for diabetes advice:

Welcome to Alt-Support-Diabetes
http://www.alt-support-diabetes.org/

I've found that it helped me get past the social interactions to choose a career that does not involve much direct interaction with other people.  Some indirect interaction through computers, though.
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Avatar_m_tn
I also have a brother who is a bit younger than myself who has undiagnosed Aspberger's.  He was unofficially diagnosed by a close friend who happens to be a psychiatrist and has spent significant time with my brother.  Years ago my brother was diagnosed by a small town mental health facility as being Schizophrenic.  We have since realized that this is not the case after years of dealing with him.  He has had nothing but drama and trauma for years and family on both sides and several friends have tried to help him straighten out his life. It is impossible.  I finally told him, after his last disaster, that he probably has Aspberger's Syndrome and emailed a website discussing the symptoms and so forth. I presented it in a tactful way and offered to help in any way I could but he is in total denial and will not even discuss the subject.  He was able to get on SSI years ago when he was diagnosed originally or sometime in that time period.  He is a very creative, educated, and intelligent man but his life is spent living partially off of his friend/landlady and puttering around doing housework and reading old books on latin and classical studies.  Not that I think there is anything wrong with these studies but for him it is a symptom of his condition. No one will hire him to teach anymore because his erractic, impulsive and mis-guided actions have served to tarnish his reputation with almost everyone he has come in contact with.  He has had some things unfairly done to him but it is mainly because he has poor judgement and gets in peoples faces and spaces too much and in the wrong ways.  He tries to have a romantic relationship with his landlady who has told him repeatedly that she is only a friend and not interested.  She is big hearted and has taken him back in several times after throwing him out.  He has totally kept her life in disarray for years by interfering with her personal relationships and personal affairs. I feel bad that I can't ask him to come live near my family but it would be a huge disaster with no way out.  I have a sick spouse and I am raising a grandchild and I can't deal with anything more.  I really don't know what will become of him when this older lady passes.  He feels very entitled and hates anyone with a little money and feels that they owe him.  He completly embarrassed one of our aunts because she wouldn't take him in and support him and she already has family living with her.  It is a very difficult situation that my family has been dealing with for years.  His main focuses are politics and geneology studies.  He considers himself the expert on all this and will not tolerate a different view point.  He wears people out talking about these two things constantly.  He has a Bachelor's in Latin and studies German(oh, yes, another obsession, anything German)and there is nothing wrong with this but, for him, it is symptomatic. And I am a very liberal person and very understanding of mental health issues.  Our family has other members with Autism, ADD etc.  I myself have a form of ADD.  But I am able to manage my life and work at keeping myself together.  I am over sixty and I have worked to try to understand myself and others and function in a healthy way.  I don't claim to be perfect but I am realistic.  I love my brother but I just don't know what to do for or about him.  I have just had to accept that neither, I, nor my family has any real solution at the moment.  Professionals have not been able to help him.  He has abused all the help he has gotten from others and it has been a lot. This is not to say that other situations are hopeless.  There are degrees of anything and maybe multiple symptoms involved with some of these folks.  Good luck to you in your search for answers and solutions if you are in a similar situation.
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Avatar_f_tn
To Willie and Others:
With autism, Asperger's, and other learning disabilities, one can possibly qualify for SSI or SSDI disability income. You'll need an official diagnosis from a doctor explaining how their daily functioning is affected. I don't know much about this yet, but do know that the harder it is to function in their daily lives, the better the chances are of qualifying for SSI/SSDI income (ie: a child having a hard time learning in school and needs a tutor or special school/classes, or an adult who has a difficult time holding down a job).

I think the SSI/SSDI income doesn't come from the parent's retirement income account, so your child won't take away money from your retirement fund!
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Avatar_m_tn
Hi  I have an older brother that has all the symptoms of Aspergers, but refuses to get help.  He is very angry, and easily becomes enraged.  He is a CPA in his own company, married, and raising a stepdaughter.  Recently he punched my husband in the face, and when my dad tried to break it up, my brother got in my dads face, and threatened him.  My daughters, husband and I no longer want any contact with him until he seeks some sort of therapy.  He is in complete denial, and claims to be happy in his life, and career, but then said "I never felt like I belonged to this family"  My dad is done with his abusive behavior also.  My mom stands behind him, and says well "he has a problem" what can you do?  She enables him, and gives him no motivation to seek help, as she always forgives him!  He didn't even apologize to anyone, and she still allows him into her home. There is never ever a consequence for his behavior, instead he gets a "lollipop" from my mom!  This makes me nuts, he treats everyone like crap, we walk around on eggshells when he is around, because you don't know when or what will trigger his anger  .Am I a bad sister for not wanting anything to do with him?  My mom cries all the time, and I have always had to give in, and allow this abuse from him to please my mom.  I feel so guilty now because I told my mom that if my kids go to her house, and she invites my brother over to see him, I will never bring my kids to her house again.  
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Avatar_m_tn
I know it's a few years, but just came across these posts which are so similar to my own story. I have a very difficult 53 year old brother, who I think must be undiagnosed autistic. He has mostly lived with my parents and has an erratic work history. He has an incredibly short fuse, interrupts people, mutters to himself, drinks heavily and is unpleasant to be around. I think he also has some sort of personality disorder -- he is suspicious of everyone, racist, and any type of authority figure is stupid and incompetent. My father has died and he now lives with my mother who has alzheimers. I have always done my best to limit my (and my husband and children's) contact with him, but he has just lost his job so when I regularly call in to see my mother he is there. He does love his mum and does look after her to the best of his ability, but of course he just doesn't have the empathy and understanding to do a good job. I find it utterly depressing and exhausting dealing with the situation as I know it may gone on for a few years. I've worked so hard to build myself a good life and -- selfishly, I'm sure -- I feel a great sense of shame and self-pity about having such a brother. I'm just posting to let others know that there are others dealing with similar situations.
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