Misdiagnosis for my adult son?

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Hello,
I am the mother of 2 adult sons. One will be 28 in June and is into his 3rd month of rehab for heroin/meth addiction (doing well at this point) and my older son who will be 30 in June.

My older son, Art, seems to have an overwhelmingly number of characteristics of someone with AS. As a matter of fact, his unusual behavior as a child now all seems to make sense to me now. His life has seemed to be getting progressively worse.

Around a year or so ago, his GP suspected that he had ADD and prescribed Adderall for him. Well, that seemed to work out fine in the beginning but did nothing for his anxiety. Therefore, GP added Xanax. Long story short, he has been seeing a psychiatrist and has been prescribed a multitude of different meds, none of which actually seem to work over a week or so.

My son finally read about AS and immediately related to those describing their symptoms. His psychiatrist agreed as well. We decided to take him to a center in Santa Barbara which specializes in Autism/AS to have him tested via ADOS (mainly because he had been diagnosed with so many other disorders to this point and we wanted to know how best to proceed with treatment(s)).

Well, much to our surprise, they did not diagnose him with AS but gave him a diagnosis of Borderline Personality Disorder. We were a bit shocked but somewhat relieved to have an actual diagnosis. We took the information to his psychiatrist who absolutely disagreed with their diagnosis. Having worked with my son for around a year, he said that he truly did not see any of the characteristics of BPD in him whatsoever. He still believes that Art has AS and suggested that we get a second opinion.

My biggest concern is when he goes into a meltdown which seems to be happening more frequently lately. I am very concerned with the heavy duty meds he is currently taking and what effect they may have on him if he does have AS. He becomes so enraged for little or no reason (in my NT mind). He secludes himself (always has) however complains that he is "lonely" and that nobody wants anything to do with him. I keep trying to tell him that he is lonely by choice since he does not want to be around people. Makes no sense to me whatsoever. By the way, one of the reasons that the clinicians said that they did not feel he has AS was because of his desire to have a relationship with a girl and/or friends. They also said that his ability to carry on a conversation appropriately was also an indicator that he did not have AS. What they did not consider was that it took him years to learn how to act/speak "appropriately" to strangers. He hates having to conform to this behavior which is perceived to be appropriate. Any way, I am at a loss here.

I am so desperate to help him at this point and just don't know which way to turn. Please tell me if there are any suggestions that you might have for us? Thank you.

I'm sorry, I don't really have any suggestions for you, but if your son has a lot of AS symptoms, then there is a decent chance that he has the disorder. The clinicians that diagnosed him seem pretty ignorant. Some people with AS may not want friends and may be unable to carry on a conversation, but they would be in the minority. The official diagnostic criteria for AS doesn't mention a thing about not wanting friends or a girlfriend, so those doctors were just going by a stereotype they had formed in their heads.

Some people with AS do get married and have kids, so we know it's possible. Is it true that no one wants anything to do with him or is that just his way of saying he'd rather be alone? There some things I see in your son that I see in me. In addition to me being diagnosed with AS, I also have Avoidant Personality Disorder and Borderline Personality Disorder. You combine those three diagnoses and you end up with someone who is a depressed social misfit that just doesn't do well with groups. Therapy & meds are sually the order of the day, so there is hope. See if you can encourage your son to visit WrongPlanet. He'll be among friends here. Good luck.

Autism is passed on in the genes so there must be a heck of a lot of autistic people having relationships and children. I have yet to meet anyone with AS who doesn't want a relationship or friends but it's like we're shackled by our condition. I can also hold a conversation like an NT. For a while at least and then I run of out learnt phrases/responses and I'm stuffed. Or the conversation bumps into a special interest and then I talk and talk and talk and the other person can't get a word.

It sounds to me like you don't have confidence in the decision the clinic made. So see if you can find somewhere else. Is there someone/somewhere the psychiatrist can recommend? When I went for assessment and when my daughter went for assessment I very quickly realised the people we saw really did know their stuff. I had every confidence in them. Waiting for the results was nerve racking because I knew whatever they were, they would be correct. You need to find someone you trust like that.

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!

There are links to all the tests I had done as part of my diagnosis on the thread linked below. I wonder if these would be of use to you.

http://www.wrongplanet.net/postxf97198-0-105.html

My suggestion to you would be to take him to a Licensed Clinical Social Worker (LCSW) instead of a psychologist or psychiatrist. The LCSW will focus on the problems that he's having with the world around him rather that trying to figure out whats going on in his head. I've been diagnosed with AS by both but I will never again see anyone other than a LCSW.

Wanting to have friends or a girlfriend doesn't rule out AS but obviously the person with AS will have a very difficult time forming and maintaining relationships. In fact, I think you would find that a majority of people who have AS want to have friends. If I heard a mental health 'professional' rule out AS because of a desire to have friends I'd run for the door.

His rage might be frustration from not being able to express how he feels.



Speaking of rage.... This pissed me off to be honest. Have you considered that he's not lonely by choice? Maybe he's lonely because he has a problem. Has anyone considered social phobia? You still think he chose to be the way he is?

MKB - Funny you should mention that because I am near certain that his uncle (from his dad's side) had AS. I divorced his dad when he was 4 years old but I remember that his dad's brother (Art's uncle) was 30 and still living with his parents. He would spend hours and hours in his room building model planes. I used to think that he was mentally ret*d until we had a conversation and I realized that he was very bright. Back then, almost 30 years ago, I don't believe AS was even realized.

Also, my son's conversations almost always end up returning to whatever he is interested in at the time (for the past 2 years he has been consumed with his mental condition). He will dominate the conversation as long as anyone will listen. He will repeat himself quite often as well.

I do have a question though. It seems that during a meltdown, my son will go on and on about what a miserable life he has and how nobody wants anything to do with him and how everybody wants to control his life, etc. But if I mention that I am feeling crappy during this conversation, he has no interest in hearing about it and will somehow turn my misery as if it is directed solely at him. Does this sound like a AS symptom as well?

As far as the clinic goes, I really don't have much faith in their diagnosis at this point. His psychiatrist has recommended someone else for a second opinion.

Well a second opinion is always good.

There are several different psychological theories to explain what is going on in autism. None of them fully encompass it and now it's believed that all of them (the mainstream ones) go some way to explaining some aspects of autism. One of these, which you may have heard of, is called Theory of Mind. Basically this means mind blindness. Some autistic people, to varying degrees, are blind to the mental states of others. They cannot see things from the other persons person's perspective, they cannot imagine what it's like to be that other person, they believe that other people have the exact same thoughts and feelings as they do.

So yes, what you describe could be an AS symptom. It could be that the only feelings that exist to him are his own, that you telling him yours means nothing because his ability to comprehend that is impaired. My AS daughter drives me insane with this. She doesn't tell me really important stuff that I need to know because it doesn't occur to her that I don't know what she knows. I found out about the week long school trip to Stockholm the evening before they left

The last thing I want to do is piss anyone off. I seem to do that quite well and quite often with my son. Of course I know that he doesn't "choose" to be lonely. What I meant to say was that he can't expect to meet friends unless he gets out of the house. It's a vicious, mean cycle. I am trying my best to help him but seem to be failing miserably.

Sweetleaf - he most definitely wants help. He has said so directly, however, because I really don't understand how his mind works, it is hard for me to understand him at times. I really want to get him around people who can relate to him and can share their feelings and experiences with him. He just gets very stubborn about that idea though. I don't know how else to help him. I have even suggested that he finds a forum such as this one, but he just says that he doesn't have time and that he is overwhelmed with other things he has to do (I don't know what because he doesn't work at this point).

Please don't think that I whine to him about my problems. I have been trying to understand and help him for the past year and a half now. I raised them as a single mom and seem to be the only support system for both sons and my parents right now. Everyone seems to have hit me all at once with their problems. I thought that we were progressing with Art's situation and that only lasted around 5 hours. I had told him that I was feeling overwhelmed at 2 in the afternoon and he seemed to be sympathetic but by 10:30 that same night I started getting texts from him saying that he is miserable, lonely, worthless and that he wants to end it all. I have been getting these types of texts from him weekly for the past year now. It was just too much for me to handle at the time and that is why I brought it up to him.

I keep trying and we keep ending back where we started. I don't know how to help him.

Yes, he definitely cannot imagine how I feel and gets extremely frustrated that I cannot understand how he feels and thinks. It's like we are speaking two different languages. He also has a really hard time with empathy and makes very inappropriate remarks.

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'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.

By the sounds of it the specialists are completly ignorant. I cant advise you on diagnosis but you can still do some things without out it. Get the complete guide to aspegers syndrom, by attwood, reading autobiographys by AS people too is good and I watch a lot of youtube vlogs by people with it.