Tuesday, October 17, 2006

A friend in need

My friend Teal is at wit's end with her live-in father-in-law, and I thought it might be prudent to turn to my wise resources in the autism blogosphere for some insight on the matter.

Teal's father-in-law, Ernie, a widower, has been living with them for several years. It has been difficult from the start, but over time it has gotten almost unlivable for Teal. Some of the highlights:

- Ernie is a collector. He goes to yard sales every Saturday and purchases old cameras and kits for model airplanes. He does not use the cameras. He does not build the models. He does not catalog them. He does not, in fact, look at them once they've been purchased. He stores them in cartons in Teal's basement. Until Teal declared mutiny and rented a storage unit this summer her very large basement was - quite literally - packed floor to ceiling and wall to wall with Ernie's "stuff."

- Ernie is not considerate. He makes demands on Teal's time (announcing, for instance, that he would like bagels from the bakery as Teal is rushing at top speed to get her children on the bus and herself off to work, expecting her to accommodate his whim and go get his bagels because he does not drive, and being shocked and offended when she does not acquiesce.)

- Ernie is (to put it mildly) not a people-person. He works as a science professor at a community college, but when he is not working he is sitting at Teal's kitchen table. All day long.

- Ernie has hygiene issues. He bathes infrequently. He does laundry even less.

- Ernie has skin problems. He picks at his problem skin while he is sitting at Teal's kitchen table, leaving shards of skin and drops of blood in his wake. Because he has hygiene issues, he fails to clean up after himself.

- Ernie is a creature of habit. His preference to stick with his habit often outweighs his desire to avoid contact with people, so when Teal has visitors Ernie stays at the kitchen table. When he does not enjoy their conversation, he puts his hands over his ears.

The list, I'm sorry to say, goes on from there. Recently, Teal has begun to compare Ernie's behavior to the DSM-IV criteria for Aspergers, especially 1) severe and sustained impairment in social interaction; 2) the development of restricted, repetitive patterns of behavior, interests, and activities; and 3) significant impairment in social, occupational, or other important areas of functioning, and it all seems to fit.

This realization, however, has thrown Teal into a bit of a tailspin. She cannot tolerate Ernie, but she wonders Am I being prejudiced and narrow-minded? She wrote in a recent e-mail:

(I imagine that) Aspergers (or whatever label you want to use as an example) isn't the only factor at work. I'm sure there's still the issue of personality. Of course, then you get into the chicken or the egg thing: did the Aspergers help shape the personality, or did the personality flavor the person with Aspergers? In terms of Ernie, I can only guess that Aspergers helped to define and shape the personality. For instance, the guy can't stand loud noises or lots of sensory stuff, and therefore learned to shy away from any situation that could possibly include those things, such as crowds, being with people, etc. And since he didn't know how to act quite appropriately (in social situations, anyway) people started to choose not to be with him - like in grade school, etc. On the other hand, I look at Bud, who clearly has a personality of his own that is not AUTISM, but just Bud - charming, funny, draws you to him, and I think that personality must not be shaped by disability. So, in all, I just don't know.

I wish I had insight for my friend. Ernie is not a child. Teal can't hire an OT to work with him or start an RDI program at home. Ernie is not interested in changing. But Teal is simply not able to continue living with the status quo.

So, blogosphere friends, what advice do you have for Teal? She is a warm-hearted, fiercely loyal person. Ernie is her husband's father, and she wants to do the right thing. But, as is so often true in life, the right thing remains elusive.


Kristina Chew said...

What has Teal's husband said about his father's health history---any history of mental health concerns? What you describe sounds familiar to me in regard to my own living arrangements..........a few more questions: Does Ernie have any friends or social acquaintances beyond Teal and her family (at work, for instance)?

I think it is helpful to consider if Ernie might have AS, though it is not necessart to get a formal diagnosis. I have suspected such in some friends/relatives and it has helped me to be much more patient about certain characteristics they have.

Daisy said...

This is a tough one. Is there an option of moving to a place with an attached apartment or a duplex? A diagnosis (formal or informal) can help her be more patient, but her sanity is at risk, too.

andrea said...

The skin-picking thing can also be related to OCD. Some of the other issues can be related to depression, as well. We also know that sometimes people who grew up during the Depression have issues with hoarding. This is not to deny those definite aspie-sounding tendencies, just to point out that any number of thigns might be going on. As assessment might be useful, if only to rule out organic issues. She will definitely need to find some way of negotiating through life and setting boundaries with this person, for everyone's sanity.

Anonymous said...

I was also thinking OCD for the skin picking and hoarding and some AS issues.

Autism Diva said...

Sometimes "rude" people are suprisingly responsive to blunt statements like, "You are not going to do this in here any more, I'm going crazy!" I would think that Ernie's son would know something about how to negotiate with his father. The straightforward blunt thing might not work, but it's something to consider. Teal or someone else could ask Ernie what he'd rather be doing if he could do anything... there might be a thing he'd prefer doing rather than buying plane kits and stashing them, but he doesn't think it's possible...
maybe there's a tangential plane hobby that could be cultivated. Something that might be more fun to do outside of the kitchen, than in the kitchen.

Teal could ask him about airplanes, and just work really hard at acting interested. If he's AS he may be craving someone to explain the details of the X98fRZ7 '45 engine mount... (I made that up, but you get the picture.) It's a very loving thing to give an autistic a chance to talk about what they love. Even if Teal's not particularly interested, she might find shreds of stuff that is interesting. She can always ask why something is important. "Why is it important that the 9yt8 Swizl Port is at an 85 degree angle to the fromblid? Who designed the Nixtor 988?" She might get a torrent, but I think he also might be less inclined to pick at his skin if he's relaxed...
Her husband might have to find a way to get at the hygiene thing. My ex's NT grandfather decided that shaving and bathing was really pretty optional at 85 or so. But a daughter in law was able to get him to cooperate, reluctantly. Part of the problem was fear of falling, the tub arrangement wasn't safe for someone that old. They got a bath bench and a shower hose thing...

I agree he probably needs a good neuro work up to look for stuff that Teal might not see.

neil said...

That so reminds me of my mum. She used to sit at her own kitchen table all day and all night, doing nothing, though she didn't pick at her skin. She felt that I should support her and when I couldn't, she had to go and get a job, which probably saved her but cost us our relationship. Guess what I'm saying is that there is no easy answer, some tough decisions may have to be made.

gretchen said...

Random, probably-not-helpful comment here: some of Ernie's characteristics remind me of a more severe version of my father. I believe dad has some autism in him, he also grew up poor, on a farm, and was not taught, or does not care to learn, certain social niceties.

Just one example: dad belches. Loudly. No matter where he is. Last time he visited my brother in Australia he belched loudly in a pretentious expensive restaurant. That was the last straw for my brother, and he basically told my dad that he was rude. Dad's response: "so what?"

So how much of Ernie's behavior is unconscious and related to AS, how much of it is a "who cares what you think" aspect of his personality?

Sometimes I feel like I am breaking my son's will when I force him to act a certain "proper" way. In grown men like this, we are seeing what happens when you don't force a child to behave within the social norms.

Lots of good suggestions here about trying to make the situation more palatable for all involved. I don't envy your friend!

Lisa/Jedi said...

I'm with Diva on getting Teal's husband involved (I was thinking "where's her husband?" as I was reading your post). I agree wholeheartedly that this man has Aspergian tendencies, & also agree that a diagnosis might not be much help. I do not think she's being predjudiced to not be able to accept her father-in-law as he is. I can't believe she's survived this long! My husband was telling me last night of seeing a patient during the day who seemed very much on the spectrum to him. The patient is an adult who lives with his mother & bathes only once a week. He asked C if he thought he should bathe more often (sounds as though his mother had been complaining) & C agreed that he should aim for at least twice weekly. Perhaps Teal's father-in-law would listen to his doctor (although, if he's picking his skin all the time, maybe he needs to get in to see a doctor in th first place). I wish her great luck!!

Anonymous said...

I had some thoughts, you can take them for what they are worth, but when reading that post, I thought ASD right off the bat.

I would make a rule -- some people with aspergers really thrive when they know what the rules are -- Long sleeves at the table. Leave a shirt right there at the ready with button cuffs. That should maybe short-circuit that skin picking behavior. Also maybe get a skin cream to be used daily to soften the skin, dry skin "picks" more easily.

Reinforce that rule with some positive strokes. Maybe a favorite treat or something (bagels?). I realize we are not talking about a child, but everyone needs positive reinforcement.

Make showering mandatory before dinner or TV time. No shower, no dinner. No shower, no TV.

You can request special things from the store, but write them down and expect to get them the next day. Mom works and can't just run off. He will have to learn to wait. Reinforce that waiting with good positive strokes.

If he is spending his own money on the "toys" from the yard sale, fine, but before any new ones come into the house, two must be donated to a good will or thrift store. Here we have more toys than anyone could ever use.

At our house, before Christmas time, when the kids Gramma goes nuts and brings a toystore, we got through the toys and bag up some and put them away or give them to the needy.

I never take the kids with me when I drop off donations. Otherwise they would be upset. And they might want to get more toys at the thrift store!!

And more positive strokes. I have used ABA on my non-autistic husband with very favorable results -- don't tell him! It works just as well on NT folks as it does on people with ASD.

Bless you for allowing her to vent some of this. Her load of frustration must be so heavy, she needs an outlet.

I have a friend who is in a similar situation, but her FIl smears feces in the bathroom despite her every attempt to make him stop.


for what it's worth said...

Certainly not an easy issue. I agree with the comments which have stated that he does appear to have ASD, but, it likely will not make any difference with a formal diagnosis. I tend to think as I look back upon my own schooling days that I likely shared my classes with students with ASD. In those days no one knew what ASD was, and everyone simply adjusted to the "quirks" of that student. I suspect as you do, he has had it for a long time. Having a career that has allowed him to be solitary has been his solace.
I guess the first issue is a question of resources. My father was a tough old bird who became very emotional upon my mothers death. We all talked about having him move in with each other, but when we spoke to cousellors, we were advised to not do that unless the financial situation demanded it. Even health issues were thought best left to an assisted living program.
It might be time that her husband begins to look for other arrangements like a small apartment within an adult complex. Perhaps being with other, older men and women, he might find comfort. The hoarding issue would definitely be resolved as they simply do not allow for "stuff" to be brought in.
I think as Daisy has said, it really becomes an issue of the sanity and the nuclear family. While sharing lives and home is a wonderful thought, it may simply not be practical and safe for all families. Time for your friend's hubby to speak up..

Kristen said...

Here here "For what its worth"! I think this man's son needs to step in here. I know people tend to immediately jump to the drugs nowadays, especially with the elderly, but if it is something like depression or OCD, maybe a doctor might be able to prescibe some medication. But this man probably doesn't see anything wrong with his behavior and might not be willing to go that route. Unfortunately, this may be one of those situations where your friend needs to come to the point of acceptance of the situation(which really is asking a lot) or changing it.

MOM-NOS said...

Thanks, everyone, for sharing your perspectives on this. I knew I came to the right place! I spoke to Teal this afternoon, and she is finding your feedback very helpful - so please keep it coming!

A few of you have asked questions, but I told Teal that I'd leave those for her to answer. She may be weighing in soon...

Teal said...

I am sincerely overwhelmed by the warmth I can clearly feel from all of you, and by the quality and insightfulness of your comments. In fact, I do have things I want to say, but am having a hard time putting it all down. I hope you'll give me a day or so to respond, and that you won't forget to check in. I really, really appreciate your help. And MOM-NOS, you are the best, period.

Milehimama said...

I would definitely get the husband involved. Does he have any thoughts? Has his dad always been like this? How did his mother cope?

That said, perhaps she could institute some new procedures and be absolutely consistent with them until FIL gets the hang of it.
Things like, if you need something at the store, please write it on the pad attached to the fridge. When he requests bagels - say "Sure! Write it down!", then leave. Then faithfully get the bagels on her errand day.

She could also go the "service" route. Keep a supply of alcohol pads and bandaids in the kitchen; when he picks, immediately and consistently "doctor" him up. He probably isn't even aware of it; this would be a kind way of drawing his attention to the behavior. He may change on his own, or even improve a litte bit, you never know. Maybe she could give him something else to do with his hands, perhaps even something that would make him feel useful? Folding dishcloths, snapping peas, sorting change into rolls? She could then praise his success (not in a condescending way, but letting him know his help is appreciated, even when he is causing more work!)

The hygiene issues, isolation, and even the packratting could be signs of depression as well.

You might have her husband speak with his dad about bathing. Does he need a particular kind of soap? Does he shower or bathe? Night or morning? Then they can get him in the habit. I, myself, can only use Ivory or Dove bar soap - if there is Irish Spring I literally can't wash!

Find out if there is a comfort/sensory thing holding him back. Perhaps he needs a bath chair, pillow, radio in the room?
If he does not drive and cannot make it to the store himself, how is he getting to yard sales?

I do not know if she is religiously inclined, but if she is, that could be a big help to her mentally. Mother Teresa wrote a book, "No Greater Love", that is tremendous. My son is not autistic, he is agressively, destructively bipolar. This book has helped me through many a tough time.

Michelle said...

I agree with some others about the possibility of OCD and depression here. I am sad to say that I'm a skin picker myself and it's definitely a compulsion for me. I otherwise think of myself as rather normal. I don't seek help because it doesn't bother me, but it drives my husband and parents nuts.

I took Prozac a while back for postpartum depression, and I must say that without really being aware of it until I realized my hands had healed, I stopped picking at my cuticles.

Do you think maybe he could see his primary about getting medication? If it's depression and OCD, an SSRI might help some aspects like picking, hygeine (which I see as a separate issue), and hording. It might also get him out of the house...

Teal said...

Friends, your comments have been soooo helpful! I have, in fact, put my husband on the job, explaining what needs to get done, and also explaining that it's his job to see that these things get accomplished. We have "fixed" the sitting at the kitchen table 24/7 issue; husband just told Ernie that he has to read his papers upstairs and can't sleep at the table anymore. There was no argument. It just was straightforward, and it worked.

The hygiene is a work in progress. Husband is now establishing new house rules every day or so, including things like bathing more often, doing laundry more often, etc. The skin picking is a moot point because he's upstairs in his room or office most of the time now, thankfully!

Making friends or socializing is not a possibility. Ernie has never had a friend in his life. My mother-in-law passed away nine years ago, and they were each other's lives. MIL had friends early on in the marriage, but since Ernie wouldn't socialize, they all seemed to fade away. Of note, she was a brilliant woman, kind of quiet, understanding of social things, and interestingly, an alcoholic.

I finally found an article about Asperger's in adults, and it's really helped me to validate my feelings, as have all of your supportive comments. Keep 'em coming, friends, and I'll keep you posted on our situation. Again, MOM-NOS, you're awesome!