Seeking Advice: 39 year old w/ recently diagnosed Asperger's

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Nobodyz... Thank you

It's just hard, ya know -- it feels like he is standing in front of a moving train and I can hardly help myself but try and pull him out of the way...

I think I'm going to post a few pictures... maybe that will better illustrate the situation. See, BIL may be more severe than the average Aspie -- then again, maybe not... I don't have a lot of experience with AS. As far as the timeline and letting it happen when the time comes... the time is pretty much here. We're planning our trip already because Dad is not doing well at all, we know the time is coming -- and soon.

If this all hits BIL at one time -- I can tell you now, it will be a disaster. (For everyone involved)

For now... we are just gearing up and trying to get our ducks in a row. One of those things will be discussing with BIL his plans; he is the kind of person who doesn't deal well with change... at one point for a period of about 3 years, he did not step foot out of the house. Literally -- not even into the yard.

So... for him, steps have to be gradual. Let me go and resize some pictures... I think you'll understand then maybe, this isn't just a case of less than perfect housekeeping

Ok... I hope these pictures are not huge -- if they are, I will remove them. I don't know if this is "average"... I know that many times when a person has AS they tend to neglect housekeeping a bit. I'm not being at all sarcastic... is this about average? To me it seemed very much out of control. I have nothing to compare it to though... I really do not know.

These are 2 of the dumpsters we filled -- we filled between 12-15 of them in addition to having a Salvation Army truck come for several very large pick-ups:



This is one of the rooms... the office. I have before and after pictures... the doors were twistie-tied off, the room was full from the floor up to my hips, there was no way to walk through the room. It had been filled up and was unusable... most of the rooms were.

BEFORE:







That is a single sized bed up on its side in the corner... most of what was in this room was garbage. Years worth of junk mail had been rubber banded together, put into grocery bags, and tossed in... the fear of identity theft was so great, nothing with the names/address on it could be thrown away. A lot of old clothes and knick-knacks, old bills and statements dating back to the late 1960's... photographs... what is worse is that there were some important items mixed in, so everything had to be sifted through carefully. This is the same view AFTER



And BEFORE:







AFTER:









(**Photos of his room, removed by request -- I left the photos of the office)

Sooo... is that about on par? Average... better or worse than average? To me, I couldn't feel ok knowing he was living this way. The clutter was contributed to by his mother, but she was not filthy really... after she was gone though, nothing was ever cleaned.

Last edited by AspieSister on 05 Jun 2007, 11:21 am, edited 1 time in total.

I'm the brother in this situation...and I appreciate all of the comments so far about it.

I guess the biggest concern that I have about it simply has to do with my perception of his ability to cope. I would love to see the world like the above poster suggested...that when the time comes...that he will rise to the occasion out of necessity. That would be the most wonderful of all options.

The concern that I have, however, is how the situation will play out, and anticipating what will happen in the context of my 37 years worth of experience with him.

How it will play out is this...

Dad will die. So far as he's concerned - the only "permanent" and "reliable" person within his life has just passed. As far as he's concerned - I am not "permanent" and "reliable" in the same way - because I will not assume the role of parent. I will not bring my wife into that situation. So - given that I will not assume the role of caretaker - even partially - he knows he cannot rely upon me in the same way.

So - he will be forced to not only deal with the loss of his last parent - but he will be forced to have to figure out a lot of basic life things that up until now he's been given the ability to neglect and ignore.

Need an apartment? Well, not only do you have to figure out how to find one, you also have to learn how to get around the fact that you have no credit. This means a month to month lease. What are the repercussions of that? Once you're in the apartment, you have to set up all of the utilities. You have no credit - so - that means extra time spent dealing with more people that you're unsure how to deal with. While you're doing that - you need to figure out how to get food into your place. Where's the closest supermarket, and how are you going to get the food back without a car? What bus lines go there? You need to pay for the food - but you have no credit card - and no ATM card...so that requires planning at least a day or two in advance to make sure that you go to the bank to withdraw money. Do you need furniture? How are you going to move the furniture from the house to the new place when you have no credit card to secure the movers? You need cable - for your internet. Once again - no credit.

...blah blah.

All of this needs to be learned how to be dealt with in a very short period of time - under the duress of losing your last "stable" person/parent - and losing the only place that you've ever lived. To compound that - all of it requires dealing with new and random people - which he appears to really fear doing...

I just worry about how that will play out.

This thread feels very violating to the privacy and dignity of a person with AS.

I'm sorry you feel that way.

There has not been, nor will there be any indication of who he is. He has no interest in internet forums and will never see this page. There are really no other options available (aside from reading books) for my husband and I to really understand Asperger's -- this is new to us and we're going through a really, really difficult time.

In most cases... I would think that when loved ones were looking to embrace and understand someone's condition, illness, situation, etc -- it would be met with respect and love and appreciation.

I have read a lot on this forum where people with AS have discussed feeling misunderstood, they have been treated in ways that feel uncomfortable, they have been emotionally abused, discriminated against and on and on.

Why? because a lot of people do not understand Asperger's. We are making an effort to understand and share what we know in a forthright and open/honest manner.

Rather than make some blanket judgement; perhaps you could be of some help.

I've been in this EXCACT situation in the past.
I would get welfare but i hated paying for things because i was afraid to go broke.
I would be tied to my computer and refuse to do chores around the house.
We had daily arguements about these things.
I wouldn't clean my room until it was a totally horrible mess and i just couldn't stand it anymore.
My parents simply refused to help me because they wanted me to do it on my own.

Than i went into a phase of slowly getting my act back together.
I hadn't worked or went to school for years due to severe sleeping problems, and i wasn't diagnosed so not getting treatment.
I hated going to the shop, hated getting my hair cut, hated working, hated cleaning.
There was always enough oppertunity to postpone these things or not do some of them.
But than my parents started going abroad for weeks at a time.

This meanth i had to do things on my own for weeks at a time often.
Usually for the first year things became a mess and during these periods i ate no vegetables, only meat mostly fastfood.
But slowly i started doing things more on my own.
At one point it seemed this bird was ready to leave it's nest.

So now my parents are gone for the summer season abroad and i'm doing everything myself.
The results have been totally amazing.
Within weeks i turned from letting my mom do everything into a totally independant person.
And i love being able to take care of myself.
Currently i'm renting a room at my brothers flat.
But i've already subscribed to an apartment of my own.

The moral of this story is this.
He wil need good reason to learn all these things.
He wil learn them at his own pace.
When the time is ready for him to do everything alone he wil tel you so.
Because he wil know it trust me.

I've been to the "live with help" thing and lived in such a house for a week.
This was just a few weeks ago.
I could totally not stand the fact that i had a certain amount to spend on this and that.
That i had to have an appointment with a caretaker almost every single day to talk about stuff and plan stuff in your life with.
I also ended up living with some loser that i couldn't even discuss things with, without having a caretaker as an inbetween person.
So these places should only be a last resort if all else fails.
Because often times these people could be treating him as a handicapped person and seriously limit his freedom.

I think that if absolutely felt like you needed to post some photos, it would've been better if you posted them in the locked part of this forum. But I'm not even sure posting photos of other people's private property without their consent is legal.

For all it's worth, my dorm room doesn't look much better, but it's not dirty, just untidy. I shower every day even though I have serious tactile issues (I would MUCH prefer baths but I only have a shower stall).

I find it very scary that in your country you need to drive a car even to get food. I am supposedly very high functioning but I can't drive a car. I've spent two years trying very hard but I'm completely incapable of participating in vehicular traffic in a safe manner.

I was in a much similar situation than your brother was at age 18 when I moved away from home to a different city to study at university. I think I only had one skill that helped me: searching on the Internet. I searched the Internet for everything - what to do in a bank, what to do in the population register, how to pay with a card (I have a debit card and I would never have a credit card, I know myself enough to know I would not be able to keep track of my credit and would likely rack up a debt). It was very very hard but fortunately I made 2 friends. They were blind but they had much better life skills. So I could help them with what problems they had and they could help me too with what problems I had. I like being around blind people because they are not bothered by my horrible eye contact. I can sit next to them and talk, without being extremely stressed like I usually am when I need to pay attention to all the things one needs to pay attention to in order to participate in an everyday conversation.

Maybe you should encourage him to look things up on the Internet when he is at a loss to how to do something. If he likes computers he probably already knows his way around online. You only need to be sure his internet connection is set up. It worked for me quite well and back then the Internet was smaller. You can also have Skype installed on his computer and he could call you free of charge when he was stumped.

But then he might find this forum and notice the photos of his room that were posted.

to be honest, there have been times my house has looked worse than that-a lot of things wander down to the basement and never get sorted through. The only reason I'm on top of the upstairs is because of the kiddos. Before, my room was probably very similar to those pictures, and so would an entire house if it was left to just me.

My boyfriend comes over and helps me get things straightened back out once a month or so, or he'll just do dishes occasionally, but for the most part with cleaning, I'm on my own. My room still looks very similar to that, but littered with papers instead of clothing, lol. He will figure it out-it may take a while. I mean, if it comes to the point of him not being able to walk through the front door, he'll have to clean to be able to get in-I doubt he'd want to up and move instead of just clearing a path (worst case scenario with the mess most likely).

I have a closet literally piled up to the ceiling with things I "might" use. But as far as I'm concerned, it's my place so I can do that if I want to.

I understand you guys are concerned but give him some time-see what he does. It's probably very hard to remove yourself from it, but logically, worrying isn't going to change anything, and doing it for him definitely won't help. He will get there, but he has to do it on his own. I'm still not all the way there but I'm making it slowly

and as far as credit, yes, that is a problem-I managed to gain credit and get bad credit quickly due to not paying bills though... so really, month to month rent isn't that bad if he's bad at bills, and there are some moving place I think (smaller ones) that will do it with cash as a down payment if you have no credit. Something is always out there

Last edited by nobodyzdream on 04 Jun 2007, 4:34 pm, edited 1 time in total.

[quote="AspieSister']The fall is here, sister He isn't the type to ask for help... I have known him for many years and my husband, of course, has known him all his life. .[/quote]

Hi, I believe I understand the situation, anyway I don't really know how to deal with it, nor how to explain what is happening to you. Many people at the site know what is happening and don't know how to deal with it. Anyway what I suggest you is:

Don't press him to do things he doesn't want to, or you will probably turn things even more difficult to him.

If you want to help him, put yourself at his disposal when he feels he needs some help, he will probably need it and thank you for it.

Also, I believe Esperanza understand more what is happening them you do.

Are you absolutely right that if he enters at your house he wouldn't get similar photographs?

I don't really understand the question as posed. If you're asking - is our house cleaner - or would he find the type of squalor found in the earlier photographs - I can answer that. Our house is like the "after" photographs.

Look, you came to us for advice, and we answered you as frankly and as honestly as we could.

Maybe instead of arguing with us and insisting that we don't understand the situation, you should carefully think about what we're saying. We probably understand the situation as well as you do, but from a different perspective. That's why you're here, isn't it?

Since you can't be around to check on him all the time, why not hire a care worker to drop by his place every week or two? He or she can make sure he's not living with pests or having his utilities cut off.

Let him keep his dignity.

Unless things are different in the state he lives in then there is no assistance unless you pay someone to help him or you do it yourself. There really are only programs for low spectrum. If an Aspie is working a normal job they will not qualify for any sort of living assistance.

I deleted it out of you quote accidently, but you mentioned not knowing how average he is compared to others with AS. He sounds pretty average for an AS male. I mean they seem to have it harder when it comes to being self reliant. The get worse when their parents enable them to be dependant well into adulthood. He really needed to be booted out of the nest in his 20's. Honestly he is not low functioning as far as Aspieness goes. He's average to above average. There is no excuse; he needs to get his butt in gear and you need to let him do it. The talk about not wanting to go on with life is bogus. Almost all Aspie guys say that. It may be true, but there's nothing you can do to change his life into something better. It's something he has to do on his own.

I'll just answer as a whole -- since the concensus is that he ought to be left to his own devices. We won't be able to hire a care taker for him -- as not only is that not in our budget, it is not our responsibilty. Our responsibility is to do the best by him that we can with the tools that we have: encouragement, compassion, sound judgement, and love.

While I agree that he does need to learn to be as self-sufficient as he can possibly be, after nearly 40 years of having literally everything done for him -- his personal capabilities at this time are very little. Yes, he has a job -- he has indicated that he fully intends to quit as soon as possible; he would very much prefer to waste away in the dark of his bedroom for the rest of his life (so he says). Not to mention that his employer cuts him a load of slack because he thinks my BIL is mentally and emotionally handicapped (and yes, actually he does come off that way almost all the time).

He has no friends -- not a single one. The only people he was ever close to were his parents, mainly his mother. Within the span of one year he will have lost those only 2 people and will also lose his home.

He doesn't know how to order a pizza, much less seek an apartment, locate and arrange for all utilities, and even if he does manage to swing that -- he has no credit. He has never had a credit card or even an ATM card his entire life.

As I understand -- what I am hearing from a good portion of the suggestions here is to wait for his dad to pass away -- go ahead and allow him to arrange for the funeral (since we live so far away -- that's how an average family would handle it, he is closer... we're 2,500 miles away) and he really does need to understand what it feels like when push comes to shove. After that -- he'll need to make all arrangements for his new home (wherever that may be) and arrange for the furnishings to be moved, etc.

We'll do what a "normal" family would do -- come out there for a week or maybe 2 at the most and assist with a couple of things, spend some time with him, and then come home and live our own lives and he can live his -- however he chooses. If he ends up on the street, so be it -- that's his choice. If he falls into an even deeper depression and takes his life (as he has indicated he may one day do) so be it. After all, he is almost 40 and that's his choice.

Somehow... this doesn't sit well with me.

As far as posting pictures "illegally" of "other people's property" That was the home my husband spent 30 of his 37 years in -- growing up and then coming back to help care for his mother when she fell ill (because BIL certainly wasn't capable). It is just as much his home as it is BILs -- so I doubt we will face any legal recourse for posting photos of our clean-up job.

I was not questioning whether or not he should be left alone... clearly, he should not be. I was questioning the best way to approach him, what might get through to him. He has not accepted that he has Asperger's -- he has not accepted that he is OCD, depressed, a hoarder, or has social anxiety. He thinks he's just a little "odd" and claims he is not in "any state that would require a therapist". Yet -- anyone on the planet who crossed his path would tell you different including those who care for him the most.

He *has* been left to his own devices... since his mother passed away he has run the home -- his father is elderly and stays in his bedroom and sleeps all day and all night hoping and waiting to die so that he can be with his late wife. Everything that needed to be done in that home was grossly neglected. Everything.

So -- either we step in and get some help for him -- or we just leave him be -- and let him find a place for himself, assuming he actually can and then just hope for the best. That would pretty much ensure that I would be consoling my husband as he deals with the loss of his third and final family member all in the span of 24 months. I guess I could then just shrug it off and say -- well, BIL made his bed -- he was 40 -- he should have known how to completely function on his own, nothing I could have done.

All that I wanted was some advice on HOW to help -- not to be discouraged and even insulted for wanting to help.

I don't really understand this question either... it took us the entire 3 months to get that house into livable condition again... If he took pictures of our house? It would look kind of like the after pictures, I suppose -- as far as cleanliness anyway. I just don't feel comfortable in a filthy home... clutter annoyes me

I didn't mean to come across as insulting to you and I don't think anyone else did either. But you ask how you can help him. There is no magic secret any of us can tell you. The ONLY way you can help him is to become his parent and do everything for him, but this will probably ruin your life. There really is no answer. Either you let him fall flat on his face and learn to live or you do everything for him and give up your own life.

So why are you worrying that he is sitting in a cluttered house? The clutter obviously doesn't bother him. If he wants to live away his life in a dark corner and not working then let him go live on the streets. I lived on the streets a few weeks and it certainly changed my attitude about getting a job. Now I have a really good job with benefits. Maybe the BIL needs to be out on the streets to change his tune. You can't live his life for him. His life is pretty much meaningless so if he doesn't care why should anyone else? We can't live another person's life.

Maybe you can get him some professional help I dunno about his state. But the rest of us have had little if no help. You either become his parent or you make him grow up or you pay someone to be his parent if the state won't. That's the options; there's nothing else we can tell you.