Misdiagnosis for my adult son?

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I'm pretty sure he's got depression. I'm not a doctor, but I've had depression in the past--recurrent, so multiple episodes--and I know how it works. You just can't see a way out. It feels like being caged in, or paralyzed, or just totally lost. The trouble with AS/depression combo is that often times you have real problems, too--real problems that need real solutions. You can't just take antidepressants and expect to feel better automatically. All they ever do is give you an edge to fight it yourself (not that this isn't useful: I'm willing to accept the extra fifty pounds of weight in exchange for the edge that antidepressants give me against my depression, and when you're girl in the USA, that's a pretty significant price to pay).

I've gotten angry at my mom too, but there's one significant difference: My mom knew about my autism when I was about eleven years old, because she is an occupational therapist and was aware of the DSM-IV when it first came out with the first widely used definition of autism without speech delay. She knew, and did nothing because she didn't want to "label" me; so, instead of being called autistic, I was called lazy, rebellious, and rude. Those are much more hurtful labels than "autistic" will ever be; in fact, now, years later with a diagnosis, I am proud of being autistic. Your son, on the other hand, would have been in high school when the DSM-IV came out, and you didn't have the benefit of being in the medical field like my mom was. You aren't to blame.

I'd be concerned about those meds, too. They put me on some pretty heavy-duty meds when I was hospitalized for the first time about eight years ago, and all they did was tranquilize me and make me tired. That might have made me seem less anxious and agitate to an outside observer, but inside, I was losing hold of the mental alertness and control that usually lets me take hold of and solve problems--losing the last bits of what was letting me fight my depression and stay functional. I landed in the hospital again in short order. That's the trouble with medication: The observer sees a different thing from what the patient sees much of the time. I was lucky, ironically, because my landlord threw me out of my apartment (yes, that is still legal), and I spent a summer without a permanent address and without access to most of my medications. When I came off most of them, I realized how much better off I was without them. Today I am on a stimulant for ADHD and a low-dose antidepressant to keep my recurrent depression in remission, and nothing else.

Most doctors are driven by a desire to take action. They want to do their jobs, and do them well--that's a human universal, unless it's been beaten down by work that seems repetitive and pointless--and it's hard for them to recognize sometimes that the best thing to do is not to do something, like not to prescribe a drug or not to add another diagnosis to the pile. Doctors want to feel like they're doing something for their patients, and they know the patients want to feel like something is being done for them. That leads to people who are getting too much medication, or too high a dose, even when the doctor is compassionate and competent. If your son is getting negative effects from his medication that are worse than the positive effects he gets from those same medications, then he needs to put his foot down and insist that the doctors reduce the number of prescriptions and the dosage to balance the benefits with the drawbacks. When it comes to psych meds, more is not necessarily better.

The paradox with your son's saying he is lonely but not taking steps to make friends is actually pretty simple. Think of it like this: You're three days into a camping trip in a big national park. You've lost your food somewhere along the way, and now you're very hungry. From your perspective, this is a big problem: You can't get food. There's no food here. But let's switch perspectives: Get in your time machine and retrieve a Native American from that same area and plop him down in that same national park. He looks at you, looks around, and is very puzzled that you say you are hungry. To him, there's food everywhere--roots to be dug up, fish to be caught, small game to be snared. He doesn't understand how you could deliberately ignore so many things to eat. Why don't you just get up and find some food? You must be awfully lazy; or perhaps you're not hungry at all?

I think you see your son a little like that Native American fellow might see you and your empty stomach in the national park. Your son wants friendship, but he simply doesn't have the skills to find it, even though the opportunities are all around. His loneliness is real, even though you don't see him actively looking for friends. Social contact is probably mentally exhausting to him, to the point that he needs to spend most of his time alone; and even when he wants to reach out, he doesn't know where to start.

Incidentally, inability to carry on a conversation is a trait of classic autism; it doesn't need to be present in Asperger's. If he weren't able to carry on a conversation, that would be a reason to evaluate for classic autism. Desire for friendships is not a necessary trait either--his inability to connect despite his desire to do so is quite sufficient. With his history of problems with spoken communication, I would be wondering whether he might not have been diagnosable with classic autism as a child, and has now lost enough traits that his diagnosis would have been re-adjusted to Asperger's or PDD-NOS since then. Either way, those aren't particularly good reasons not to diagnose AS, especially not in view of his obvious problems with social reciprocity and his need to learn the rules of social interaction explicitly.

Autism is something that's part of how you're made. If you're autistic, you have a healthy autistic brain, not a damaged typical one. The goal of treatment for autism is to learn useful things that help you live in a world not made for autistic people--not to become normal, but to learn to communicate with others. You learn that it's more effective to do things your own way, instead of imitating NTs; that you'd rather be eccentric and happy than be constantly, neurotically checking to be sure you were being "socially appropriate". Frankly, I don't blame him for being angry that he's constantly being asked to comply with social rules--I don't like it, myself, and I've made the choice to modify my natural interaction style only where it causes confusion, embarrassment, or hurt feelings for other people. I would rather deal with the fact that people think I am weird, than spend all of my time pretending, reinforcing the idea that who I am is unacceptable. I'd rather tell the world, "Hey, I'm different. And if you don't like it, you can go take a hike, because you're not the kind of person I want to interact with anyway."

Bring your son over here--it's better to talk to people personally rather than having someone else relay information. There's also a parents' forum, though many of the parents have much younger kids.

I don't like it, myself, and I've made the choice to modify my natural interaction style only where it causes confusion, embarrassment, or hurt feelings for other people. I would rather deal with the fact that people think I am weird, than spend all of my time pretending, reinforcing the idea that who I am is unacceptable. I'd rather tell the world, "Hey, I'm different. And if you don't like it, you can go take a hike, because you're not the kind of person I want to interact with anyway."

I have spoken with some of his friends and they tell me that he tends to be a loner and not get involved with the "group". His friend told me that they will be out at a club and it is obvious that a girl will be looking his way and seems interested but my son won't believe it. Even when his friends find it obvious, he doesn't see it and will not act upon it. He has always been extremely shy (even as a child) and will not approach people he does not know.

Can you please elaborate on the similarities you see between the two of you? I am trying to get him interested in joining this group but he tells me that he is so overwhelmed with other things (of which I have no idea). Thank you so much for responding UnLoser and redrobin!

As I am writing this, I continue to get texts from my son telling me how miserable he is. Then he starts saying stuff like, 'if we would have listened to him when he was a child, he probably would have gotten treated earlier'. and that we are trying to "run his life" by telling him what to do. (Keep in mind that when he was a child, there was no diagnosis of AS or even ADD. I did take him to a psychologist who diagnosed him with depression. Anti-depressants did not help him whatsoever.) Then turns around in the next text and says - nobody wants to help me. It's like he doesn't see the contradiction with that.

It feels as if he is blaming me for everything and then when I go to defend myself, he says that he is not blaming me at all. I can't keep talking in circles like this. I am getting so frustrated with the lack of understanding between us.

Also, I don't see him trying to find treatments or answers to his mental state. He can continue to research the symptoms, but never seems to look for the answers or ways to help himself. That seems to be my responsibility and when it doesn't work, he blames me for "telling him how to run his life". I'm sorry, but I am just so damn frustrated at this point and have never felt so close to giving up as I do now.

I'd be concerned about those meds, too. They put me on some pretty heavy-duty meds when I was hospitalized for the first time about eight years ago, and all they did was tranquilize me and make me tired. That might have made me seem less anxious and agitate to an outside observer, but inside, I was losing hold of the mental alertness and control that usually lets me take hold of and solve problems--losing the last bits of what was letting me fight my depression and stay functional. I landed in the hospital again in short order. That's the trouble with medication: The observer sees a different thing from what the patient sees much of the time. I was lucky, ironically, because my landlord threw me out of my apartment (yes, that is still legal), and I spent a summer without a permanent address and without access to most of my medications. When I came off most of them, I realized how much better off I was without them. Today I am on a stimulant for ADHD and a low-dose antidepressant to keep my recurrent depression in remission, and nothing else.

When it comes to psych meds, more is not necessarily better.

I am VERY concerned with the meds. I am also very concerned that he is living on his own and is so forgetful of whether or not he has taken his meds or not. I keep trying to get him to let someone stay with him (the house is 2700 sf with 4 bedrooms so it wouldn't be crowded) but he insists that he does not want anyone there until the house is repaired and cleaned up. You see, during his meltdowns he will destroy the house. He has put numerous holes in the walls and thrown furniture from the second floor down to the first (this has caused the stairway bannister to be destroyed and now gone). He goes into a rage, destroys the house and furnishings, eventually calms down and then feels horrible and guilty when he realizes what damage he has done. This happens around once a week at least. I worry about his safety, but he insists that he will be okay.

I'm not sure if this is significant, however, he always wakes up in a rage. He has insomnia and has no real sleep routine but no matter what time he wakes up - he is ANGRY. He is the one who has told me this time and time again.

The paradox with your son's saying he is lonely but not taking steps to make friends is actually pretty simple. Think of it like this: You're three days into a camping trip in a big national park. You've lost your food somewhere along the way, and now you're very hungry. From your perspective, this is a big problem: You can't get food. There's no food here. But let's switch perspectives: Get in your time machine and retrieve a Native American from that same area and plop him down in that same national park. He looks at you, looks around, and is very puzzled that you say you are hungry. To him, there's food everywhere--roots to be dug up, fish to be caught, small game to be snared. He doesn't understand how you could deliberately ignore so many things to eat. Why don't you just get up and find some food? You must be awfully lazy; or perhaps you're not hungry at all?

Oh my gosh, this is such a fantastic way to explain this! Thank you so much and I will refer to this reference from now on.

Autism is something that's part of how you're made. If you're autistic, you have a healthy autistic brain, not a damaged typical one. The goal of treatment for autism is to learn useful things that help you live in a world not made for autistic people--not to become normal, but to learn to communicate with others. You learn that it's more effective to do things your own way, instead of imitating NTs; that you'd rather be eccentric and happy than be constantly, neurotically checking to be sure you were being "socially appropriate". Frankly, I don't blame him for being angry that he's constantly being asked to comply with social rules--I don't like it, myself, and I've made the choice to modify my natural interaction style only where it causes confusion, embarrassment, or hurt feelings for other people. I would rather deal with the fact that people think I am weird, than spend all of my time pretending, reinforcing the idea that who I am is unacceptable. I'd rather tell the world, "Hey, I'm different. And if you don't like it, you can go take a hike, because you're not the kind of person I want to interact with anyway."

It is simply uncanny how this sounds like him almost word for word. He continually tells me that he cannot stand the way people constantly lie and deceive each other by 'acting' a certain way and that he does not want to be like that. I honestly don't have a problem with that until, as you mentioned, it actually hurts someone's feelings unnecessarily (someone that matters and means well).
I wish that he would adopt your outlook on social behaviors. It seems to bother him extremely that he acts differently in social circumstances. I think that he is stuck in a place where he wants friendship/relationships (a family is his biggest desire) and thinks that he can only achieve those by acting like NTs. He doesn't want to be or act like someone he is not. It's almost like saying that he is not capable of being loved/liked as he is. I get that. This is why I keep trying to encourage him to go to support groups for AS and/or join a forum such as this one.
Bring your son over here--it's better to talk to people personally rather than having someone else relay information. There's also a parents' forum, though many of the parents have much younger kids.