Aspergers/HFA teen playing dumb and regressing

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Hope to get the suggestions of the members of this forum about the issue we have. My son is 19 years old and HFA with a lot of obsessive thinking (more like Obsessive Compulsive Personality Disorder rather classic OCD). Since last 4-5 years we have seen gradual regression as my son has gone into teen years. Currently he is out of school but not agreeing to do anything to learn anything even about simple living skills. Over the last 4-5 years he has lost whatever interest he has in video games, travel and even TV. He has made a life goal of going thru some encyclopedia about Pokemon and that too is very slow progress and has become multiyear project.

Since last year many times he tries to play stupid. He will say I don’t know how to do brushing, walking, basic stuff etc. He thinks whatever he learnt so far that was not the right way to learn, so one day in life he will learn how to do the brush in a prefect way. He has IQ around 85, has driving license, basically he has the capability to do many things if his mind was into these.
He was diagnosed at the age of 3. SO we had been in constant touch with doctors and meds.The neurologist and psychiatrist has the view not much can be done. We have seen many therapists, but most of them treat issues more as behavioral issues and advise us to be stricter. But our feeling is trying to do stricter also produces negative results over long term and causes him to be more narrow minded.

We will like to know does any other member of the forum or any parent has come across this type of situation. How did you deal with it? Any hope?

TIA, Raky

Has none of the therapists suggested depression? This is what it sounds like to me.

I have two thoughts regarding this. The first is that it could be depression, as a previous poster said.

The second is that it may be some form of response to being overwhelmed. Admittedly, at almost 30, I am the same but have the freedom to be so a little more (though it isn't ideal with a family of my own!). Fact is, a lot of basic tasks get me overwhelmed. Technically I 'know how to do them', but when I'm faced with the task I shut down.

I can't process what I need to do, I end up feeling utterly exhausted even just thinking about doing it, and I'm really negatively affected by getting the task done.

This, I think, comes across as a lazy and can't-be-bothered attitude. My husband does most of our house maintenance because even basic tasks destroy me. That's one of the hardest things in the world for me, because I feel so guilty, but it doesn't make it any easier.

So, I naturally identify when a task is 'too hard' for me - when it's going to make me feel exhausted and overwhelmed - and I don't do it. I have tried, of course - I've tried forcing myself to do it anyway, and that often works for a day or two, but then I end up feeling so much worse because of it. I end up needing to nap during the day or sleep by 7pm, I end up emotionally and physically drained, I shake with tiredness. I feel proud of myself for actually achieving these basic things that as a grown adult and mother I should be able to do, but no amount of pride can outweigh the exhaustion.

And it isn't easy to put into words. For a long time before I was diagnosed, I simply said that I didn't have time. And that was true to some extent - I struggle to find time for these tasks because I can't fit them in order into my day, finding a point where it's okay for me to get overwhelmed and when I'm not already too tired to do them. If I'm going to do a task, I have to accept that I will be drained and 'weak' for potentially hours afterwards, and take that into account. Not easy when you have other commitments! And if I leave it until the end of the day when my other commitments have ended, I'm already naturally tired and don't have the energy to get the job done.

I'm certainly not depressed. I'm a very happy individual and do a great job at many other things - I run a business, I'm raising a happy child very successfully - so it isn't that I'm incapable of everything. But simple things like household chores, which should be significantly easier than raising a child or writing an essay a day, destroy me.

Obviously I don't know your son, but I wanted to bring this in as something to think about. I imagine if you know he's capable if he tries, this could be the most frustrating thing in the world, but there is a good chance he's shutting down to protect himself from that experience of being overwhelmed and exhausted. And if that's the case, no amount of strict behaviour is the answer because doing it only makes things worse. That said, I don't have any alternative advice for how to deal with this. If I did, I'd be taking it myself!

Is your son a horse?

...

Sorry, couldn't resist.

I thought the same.

He may be reacting to the change in routine--school provides a regular routine--when that went away there was nothing to fill its place.

My best guest is also that your son is dealing with a depression. It sounds like he needs help for that, not just for autism.

Thanks all for your valuable suggestions. Given my son was diagnosed at young age so we had been in touch with professionals and have read a lot of material. As per Doctors he does have some depression and is on meds but they say his depression also does not fit the classic clinical depression type. They say it is more his neurological problem. ArielsSong’s comments about being overwhelmed does make some sense. After reading so many books and training etc as parents we have learnt how to break things in small parts to explain to him. We know about the resources available and we don’t have any issue that will stop us getting any needed resource. But the issue is his co-operation. He has kind of decided that he wants to spend his life on reading Poekmon encyclopedia. No amount of explaining by the therapist and parents that this is reference info and people don’t read it end to end, has convinced him to not do it. As per him everything else is boring. Given the Doctors says nothing can be done, therapists usually think we need to be more strict, we wished to know the opinion of members of this forum who may had been thru this type of situation as self or as parents. How to get his co-operation to help him!
TIA,Raky

We have been through this. And you're already getting our opinions. The need to dive into our little inner worlds gets worse when we feel like our lives suck. Treat the depression and you'll have a son who doesn't need to spend so much time in pokemon world. Which, BTW, there is nothing wrong with reading that stuff cover to cover. That's his treatment right now. Chances are, pokemon has something he needs to learn, some way that he is ordering his thoughts around it. If you want to talk to him, you can help him by putting it into pokemon terms.

Think of it as if he had the chicken pox. Would you look at him and say, "now, son. This is chicken pox. Stop having that rash! And while you are at it, get out of bed... first pull the covers off and then swing your feet down!" No. You wouldn't expect explanations and breaking things down to get him over that. I don't know why this is, but we don't give mental illness the same respect we give physical illness.

I'm not just saying that he needs more anti-depressant medication. He might or he might not. He might be lonely. He might be really upset about something and not be able to express it. He might be of an age where he can understand that he really does have some problems and he might be giving up on himself. That's a pretty typical revelation for a 19 year old and it's really hard - especially if everyone else his age is moving out of the house and going to collage and he feels trapped. That's seriously depressing stuff right there.

Does he have a set routine? I get that way in the summer when I don't have anything to do, and I can make very slow progress during semesters when my schedule is weird in some way. I don't need to do anything, so I sort of don't know what to do with myself.
Have you looked into online classes?

...I've sometimes maybe thought that if I'd been " dumb " more/" played dumb " people would've liked me more .

The therapists acknowledge he is depressed and then tell you to be more strict with him? That IMO makes no sense.

Unfortunately a lot of early adulthood aspie depression is caused by not being able to find a proper, dignified place within society. Society has certain expectations of what a young person is supposed to achieve and when, and often times this is the stage that trips some aspies up. What I think he needs is to understand that he has his own trajectory and that the people close to hi are not judging him based on what society expects, annd let him know that you understand that it may take him awhile to find his thing. Then I think he needs help finding his thing--not in a punitive, "You need to contribute way, but more with an emphasis on self-actualization.

I have no idea how to do this, so I apologize if my advice is not concrete enough. My son is younger than this, and we have not reached this point.

This ^^^^ is exactly what I was trying to express.

If you (parents) drop dead tomorrow, what would happen to him?

It isn't me being an ass or making a funny, could he function at all?

Grocery shop? Write a check? Make a doctor's appointment? Get a prescription filled? Wash clothes? Dishes? Hair cut? What he has to do for bare bones survival in the world.

There is a big difference between it is much more nicer reading Pokémon than doing laundry (hell, I'll agree to that!), than I haven't got a clue.

Is there anyway to get him into supportive housing? My friend did that with her 18 year old Aspie son. He has is own studio apartment, and at first the support people came much more frequently, than now. The deal with him is either that or a group home. Who the hell wants to live in a group home? NOBODY.

Her son would not do anything at home. It wasn't just "helping around the house", it was totally not functioning, like not bathing more than once a month. Strangers will make you move your ass faster than parents complaining. Her son is 30 now. Has a job, has a little bit of a social life, and he has requested his support workers to still come once a month to make sure he's on top of that boring adult s**t no one likes to do.

I'm not saying toss your sonto the curb. I don't see why you and his team of doctors plus him can't come up with some reasonable timeline to move him towards some independence.

Are you his guardian? Does he get SSI?

We are starting to see more and more collage programs, aimed at people who will eventually be able to live independantly, but need some additional support with daily living skills before that happens. There's a new one here in Jersey at Rutgers (a VERY good school.) But there are even more programs for young adults who are accademically able, but have some barriors to learning, like LD or autism. They provide more support than typical collage settings, but the students take regular classes.

I wonder if your son would be interested in exploring some of those programs. At the very least, it would keep him from staying at home being nagged by his mom to grow-up. (Someone else would nag him!)

Thanks all for your suggestions.

We had enrolled him in appropriate residential/academic program after he finished the high school. But our son does not have the necessary independent living skills to survive there. Before going there we tried hard to work with him so he learns day to day skills. He said he will just learn once he is there. But once there he did not survive and dropped from the program. Now he does not want to do anything until he finishes Pokémon encyclopedia which will take a few years. We do understand the logic behind therapist's suggestion to be stricter as seemingly there is no other option. He is so lacking in skills and against learning that if we drop dead tomorrow he will on the road and probably won’t survive.
Inviting the suggestions of the members of this forum is an effort to take another step in this tough journey.