Responding to those who discredit psychiatric diagnoses

[Wendi]

Recently on Facebook, an acquaintance posted a video. The basic message of the video is that labeling kids with psychiatric diagnoses (ADHD, bipolar, conduct disorder, etc.) is wrong. I read the website of the organization that made the video; the organization promotes the idea that psychiatric diagnoses are bogus and purely subjective.

 

This is not the first time I've encountered these ideas, of course. There are those in the church who insist that all these disorders are really just sin, the result of bad parenting, etc.

 

As someone with OCD (wonderfully under control with medication), who has a BIL with bipolar disorder and a son with Asperger syndrome (newly diagnosed, previously diagnosed with OCD, SPD, probable ADHD, maybe mood disorder), I have a hard time with this. I realize that there's no objective diagnostic test for these problems (although apparently some brain scans, etc., have shown differences in some cases). How do I respond? How do you respond to those around you who deny the existence of these disorders?

 

Wendi

[AnitaMcC]

I just pay no attention to people who just don't understand about behavioral dx's if I don't have to deal with them on a regular basis nor do they have any direct interaction with my kids (or me).

 

I have found convincing people to believe in behavioral dx's takes a lot of effort from me. So I focus that energy on helping those who matter to me and my family understand in gentle ways and to be proactive where needed. Often I just leave easy to read information laying around. I find that curiosity works better at helping the "non-believers" into understanding more. Every now in then autism/ADHD/LDs topics come up in family get togethers and we will impart tidbits of information.

 

Thankfully those that matter to us just love us and mostly accept our quirkiness as part of us. We try to be proactive to avoid any issues... like making sure Ds#1 has a place to go to for his own quiet space when visiting relatives. Many think he is just shy when in reality he just can't stand all the sensory input bombarding him. Over time it just has gotten easier as certain dx's have been cropping up more in our extended family (Ds#1 was first dx on autism spectrum... now there are 3 others children dx'd over the last 5 years) and actually most of the "non-believer" family members find out the hard way... they have children who are "difficult" and find out that it really isn't "just bad parenting".

[PeterPan]

Wendi-That's such a hard thing, because I've been on both sides of it. At this point I personally think both sides are blind. Aspie and autism have become so mainstream and recognizably medical that I don't think you'd have problems with anyone. Yes there are increasing problems, and yes some of it probably does include an element of parenting. And yet these same people who say the psychiatric side doesn't exist have NO medical knowledge as to the very real physical problems going on in these kids!! It's not as if we're saying our kids have such and such behavioral symptoms (which of course anyone could write away as bad parenting) and NOTHING else. You're saying bi-polar plus SPD plus this plus that. These are SICK kids with legitimate physical problems, a laundry list often, that any reasonable person could understand if they knew the whole story. Instead they latch onto one label.

 

Personally, I would stick to the physical, the recognizable, the things they can understand. They can understand: my child has a sensory problem and touch hurts them. They react funny, but it's their sensory system. We're doing OT for it. You don't have to tell the psych label part at all, and in fact I wouldn't. Why toss out a label that they aren't informed enough to understand? I don't say my dd has _____. I just say my dd has working memory issues. They go hey, that's pretty interesting. It's something they can grasp or imagine, even though they don't really know what it means. It sounds physical and concrete, not the same as a psych label.

 

I also try to be careful how I present my dd, because this person who is a child now has to live with these people, in a community, in a church, in a whatever, and have her right to privacy, kwim? It's just something I keep thinking about with my dd.

 

Ok, I'll ramble on about this for another minute and then give up. I took the nouthetic counseling (Jay Adams style) courses in college and grad school, so I know about the non-psychiatric, it's all sin, approach. They paid lip service, utter lip service, to the idea of physical problems being at the root of things. They NEVER had a doctor in, never had us read extra materials on the very real physical problems (low thyroid, etc.) that are EXTREMELY COMMON and can lead to symptoms for which people would seek counseling. They never discussed any of it. When a student asked why her relative was so much better on lithium, the prof said he didn't know but it didn't matter, it was still volitional. So you get my point. They are totally blind on the medical side.

 

AND YET, it is also true that it's so easy to look ourselves in the mirror and whitewash everything. I shared the book "Pretending to be Normal" (autobiographical material of an adult aspie) with a friend who commented the lady seemed very self-centered. And indeed the author WAS! So does having a neurological impairment and laundry list of physical problems absolve us of all guilt?? Does it mean we are good-intentioned? I've always assumed it was my ugliest self coming out in my worst moments. For instance, if my sensory system is riled up and I respond angrily at dh, is that my fault or my body's? Surely it's both. Surely if I were sweeter inside, it would come out.

 

Well I'm rambling here. I've been on both sides. I've had churches say it's all sin, skip the meds cuz they're mind-altering. I've had pastors counsel that said relative should take the meds by all means, ignoring the bad things the person had volitionally chosen to do. Equally not helpful. So I think they're ALL blind. And what you say depends on the audience and how they will receive it. I think it's more important to respect the dc's privacy and paint a picture that the receiver can understand than it is to be informative, if that makes sense. They don't need to know everything, only enough to interact with the dc appropriately.

Edited December 27, 2010 by OhElizabeth

[Guest]

 

AND YET, it is also true that it's so easy to look ourselves in the mirror and whitewash everything. I shared the book "Pretending to be Normal" (autobiographical material of an adult aspie) with a friend who commented the lady seemed very self-centered. And indeed the author WAS! So does having a neurological impairment and laundry list of physical problems absolve us of all guilt?? Does it mean we are good-intentioned? I've always assumed it was my ugliest self coming out in my worst moments. For instance, if my sensory system is riled up and I respond angrily at dh, is that my fault or my body's? Surely it's both. Surely if I were sweeter inside, it would come out.

 

 

 

OhElizabeth, I loved what you said about your dd having to live with these people, so that presenting a description rathe than a psychiatric or neurological label is sometimes a good way to go. I loved a lot of what you said.

 

But -- The author of Pretending to Be Normal is an Aspie. Temple Grandin, whose books are incredibly "self-centered" according to our definitions, is also on the spectrum. There have been studies showing a lack of the "mirror gene," or the ability to project one's feelings into the wider world or to understand other people's feelings, particularly if they do not harmonize with their own.

 

There have also been studies beginning to show that many people on the spectrum do not lack empathy, but rather suffer from a kind of emotional sensory overload from which they retreat in self-protection.

 

Either way, expecting sweetness in your own response as you described above I think DOES put too much expectation on the person who is dealing with a neurological difference. People on the upper end of the spectrum may come to mimic the proper responses or function fairly reasonably, but they may not; and some people on the spectrum will always live in their own world and WILL NOT BE ABLE to acquire the ability to put forward the kind of response, in the manner and tone that is expected socially and culturally. I don't say you shouldn't aim for this or keep it in mind; only that to expect it of yourself while not expecting a similar understanding and acceptance from your dh is unbalanced and puts too much of the burden on you.

 

Not only does your dd have to live with others; others also should have this same expectation put on them: they need to live with her, to understand and accept someone who is not exactly like themselves. To my mind, refusing to do this is as self-centered as you perceive the author of Pretending to Be Normal, and with a lot less reason! We put all this enormous effort into explaining to our Aspies how to fit in and conform; where is the similar effort put into getting neurotypicals to help comfort Aspies and communicate in a way they find natural and logical? Yes, there are lots of books out there and everyone has now heard of autism; but that's a long way from understanding, and a long way from actively working WITH people with neurological differences.

[PeterPan]

Karen, those are really good distinctions. Just to split hairs a bit, you'll notice I didn't say her self-centeredness (which was how my friend described her btw, not my own take) was a sin. As you say, there are things that just ARE in the neurology. I think I view it (at this stage of my life) as having three prongs: 1) bent and you can't change the output, 2) bent and you can, 3) bent and you want to change the output but can't. To me, that last type is actually the hardest to deal with.

 

I'm done with looking for understanding or acceptance or anything else. I've gotten burnt too many times. I'm tired of the misunderstandings, the way they read their own experiences into it, the pity parties, etc. So even if you made it your mission to educate those around you, the results might be annoying. I've met very few people who have an ability to connect and open their minds in the way you need, very few.

 

Let's flip this. It's the responsibility of the NT person living with you to "get" it? Wouldn't that be such a luxury? Wouldn't that be beyond reasonable and extremely unlikely? Even if the person wants to, they're likely only to get it to an extent, meaning it really is back on the non-NT. I don't know, I've just found NT's to have sort of limited ability to grasp anything beyond their experience. It's sort of an inverse blindness and limitation. So the non-NT has to understand BOTH the NT and themselves, but the NT doesn't even bother to grasp himself. Go figure.

[Ottakee]

It is tough and honestly, quite often the toughest in the church.

 

I think that in the future they will find some tests for many mental illnesses. For example my daughter with bipolar has POLG 1 which is a mitochondrial disorder that has bipolar as one of its common symptoms.

[PeterPan]

Ottakee, that's really interesting that they could actually track down the physical CAUSE of her bipolar symptoms. That's what irks me so much, that it seems to me there ARE causes. We just don't know them yet.

[Ottakee]

Years ago they used to think that seizures were sin/demon possession as well and now they can do brain scans and EEGs to determine seizure activity.

 

On an interesting note, all of the major meds for bipolar (except lithium) are seizure meds. Make you wonder if there is some sort of connection there.

 

That said, I don't/won't excuse all of my daughter's behavior due to an illness (the bipolar). The meds allow her to have more control over her actions but they don't turn her into a perfect robot either.

 

Ottakee, that's really interesting that they could actually track down the physical CAUSE of her bipolar symptoms. That's what irks me so much, that it seems to me there ARE causes. We just don't know them yet.

[PeterPan]

And you know, it's really fascinating because if you said your dd is on seizure meds, they wouldn't blink an eye. But say she's bipolar, and they're all in an uproar, saying you're writing off a sin problem. The trouble is "bipolar" is sort of nebulous and doesn't communicate much, just has a lot of connotations. Outside people are never going to take the trouble to understand such complex issues.

[laundrycrisis]

I have seen that video, just today. It was posted by someone who I am guessing has never seen chemical imbalances in action up close, or experienced them. It is perhaps easy for someone in that position to decide that it is all not real, and just a conspiracy by big pharma. I am against overdiagnosing, but the idea that none of it is real, ever, is not helpful to those who are dealing with a very real problem that needs to be treated. I found the video to be disturbing.

 

I had a roommate who was on meds for schizophrenia. She decided to take herself off them. She became very unstable and impulsive and made some very poor decisions that made no sense at all and had bad consequences - it was sad.

 

I have a sibling who is bipolar. His wife has told me what a roller coaster life with him is. Some of his impulsive decisions can be very destructive financially. His depressions are deep and frightening.

 

In the past I have been treated for recurrent major depression. I think someone who has not experienced major depression or seen it up close in someone they know well, cannot understand how it is so much more than just feeling sad - I felt my very soul was being ripped to shreds, but could not say why, but only feel the inexplicable pain day after day. Since going through it myself, I have directed two other people who were suffering silently to get help for depression - both of these people had been considering suicide. I believe medication saves lives.

 

I have two nephews who have ADD. It runs in our family. I am all for learning to monitor one's own mental state and trying natural remedies and if someone finds one that works, that is great ! I also think that ADD/ADHD meds are at this point probably overprescribed for young children who are simply being put in an academic situation that is not compatible with their young nature. But when a person struggles for years, and experiences sadness, frustration and low self-esteem because of it, and the medication helps - it's a blessing.

 

I have another family member who has pyroluria. It was diagnosed, by a psychiatrist, with a urine test for kryptopyrroles. It causes a variety of mental symptoms. Treatment is pretty much all natural supplements that correct the imbalance that it causes.

 

I understand those who take issue with overdiagnosis, and I do think that is perhaps a real problem that should be examined. But dismissing all psychiatric diagnosis outright is ridiculous. Psychiatric illness causes real pain, and can destroy lives. IMO it is wonderful there are some medications available for treatment.

Edited December 28, 2010 by laundrycrisis

[mykdsmomy]

I'll jump in here too. I am on a mission to educate the world about the devastation that Fetal Alcohol Spectrum Disorder can cause. My ds6 lives with permanent brain damage from his birth mother's choices. His birth mother herself had mental health issues so ds inherited those plus the brain damage from his mother's self medication (alcohol).

 

Ds looks average. He doesn't "look" like there's anything wrong with him. He is articulate when he speaks and *can* hold it together in some instances.

 

I constantly get the "he doesn't seem like he has brain damage...maybe you just need to set firmer boundaries" If I had a nickel for every time that was said to me........

The thing is, if ds was in a wheel chair or if he was blind (my ds10 is legally blind and there is much more empathy for him than for ds6), he would be given more grace. His brain causes him to have rages. We are working on this through several methods (meds being one of them) but what do we do if he still can't control his impulsivity or anger when he's an adult? That part of his brain is damaged. If someone lost their ability to walk or talk through brain damage, we wouldn't expect them to "just deal with it and walk and talk"....and yet it seems that as a society, we treat mental illness like it's a choice.

[Guest]

I'll jump in here too. I am on a mission to educate the world about the devastation that Fetal Alcohol Spectrum Disorder can cause. My ds6 lives with permanent brain damage from his birth mother's choices. His birth mother herself had mental health issues so ds inherited those plus the brain damage from his mother's self medication (alcohol).

 

Ds looks average. He doesn't "look" like there's anything wrong with him. He is articulate when he speaks and *can* hold it together in some instances.

 

I constantly get the "he doesn't seem like he has brain damage...maybe you just need to set firmer boundaries" If I had a nickel for every time that was said to me........

The thing is, if ds was in a wheel chair or if he was blind (my ds10 is legally blind and there is much more empathy for him than for ds6), he would be given more grace. His brain causes him to have rages. We are working on this through several methods (meds being one of them) but what do we do if he still can't control his impulsivity or anger when he's an adult? That part of his brain is damaged. If someone lost their ability to walk or talk through brain damage, we wouldn't expect them to "just deal with it and walk and talk"....and yet it seems that as a society, we treat mental illness like it's a choice.

 

I completely, completely agree. My child is an Aspie, who also "seems" normal to those who don't look very hard. When she was younger I was accused over and over and over and over of helicopter parenting when I was trying to keep other kids from mowing her down when she froze. (Ironically, now she's the kid who at 14 has a part-time job.) People still by and large don't get it despite all the explaining and book-lending I do. I think you just don't, until you live with one of these kids (of any difference); the very very few people who do seem to get it are psychologists.

 

Sadly, you'd be surprised to hear the story of one girl who doesn't speak (she can only make vowel sounds) due to catastrophic brain malformation. Her father details on his blog how many times people have: told him he must be parenting wrong; turned off her assistive speech device but claimed they hadn't; urged him to keep forcing her to try to speak rather than use sign language (which isn't that successful as she's got fine motor defects as well) or computer assistance.

 

(As a total aside, his blog is pungent but interesting -- http://www.schuylersmonsterblog.com -- and his book, Schuyler's Monster, is very touching.)

[PeterPan]

Oh my lands Karen, that's horrendous! Been on the receiving end of some of that "your child doesn't xyz because you're doing such and such thing wrong" too. Joy. I'm sick of them too and pretty much say that upfront, any time I talk about it, curbing it. My dd says I'm getting crochety in my old age.

[Tiramisu]

Oh my lands Karen, that's horrendous! Been on the receiving end of some of that "your child doesn't xyz because you're doing such and such thing wrong" too. Joy. I'm sick of them too and pretty much say that upfront, any time I talk about it, curbing it. My dd says I'm getting crochety in my old age.

 

Elizabeth, I wish I were closer to Cincy so I could get to the convention and meet up with you and have a healthy venting session. :)

 

I went to the library to drop off some books this morning and picked up a book on ADD that looked interesting. The author puts a big burden on parenting, and even though I don't buy (most of) his hypothesis, it still depressed me.

 

Now that I'll be putting one dc in school, I feel like I'm going to be entering a combat zone. Already, people with dc in ps are reacting in a way that shows very obviously they think I've finally come to my senses and assuming this means I'm putting all my kids in. Now I'm afraid that every issue that comes up with this dc will approached as the result of poor parenting and a consequence of my hs. I'm not so much concerned with the teachers as with the ps parents who seem to think parents can only be happy and children can only be well-adjusted when they don't spend too much time with each other.

 

Meanwhile, I'm sure my homeschooling acquaintances think I've lost my mind and that if may parenting and hs methods were better I wouldn't be in this situation.

 

Since I'm obviously on a rant, I'll keep going... What really gets me is well-intentioned people telling me if I used physical discipline on my special needs dc all their problems would be solved.

 

I guess that's enough now. Sorry if this has gone really OT.:001_smile:

[PeterPan]

Kelli-That's a lot to be going through! Can't win with either side at that point. I hope the change goes well for you.

[laundrycrisis]

:grouphug: Kelli.

 

The idea that the problems aren't real and will just go away with "better" parenting or teaching is unhelpful and offensive.

 

Our younger son has some sensory issues with loud and chaotic sounds. Today at his music class, one of the other parents commented to me that he probably has problems with it because "you must keep your house really quiet all the time". :banghead: The kicker - she is a preschool teacher :ohmy: - someone I would expect to recognize and understand it. Fortunately the music teacher recognizes his problem and does not blame me for creating it.

[PeterPan]

Sigh, heard that one too. "Your dc would tolerate noise better if you ran a vacuum during the day. The real problem is she's an only. She needs to go to school." On and on. It's wiring. I wish we had understood it earlier. We weren't looking for it and missed early signs. It's good that you have found yours so young!

[Tiramisu]

Kelli-That's a lot to be going through! Can't win with either side at that point. I hope the change goes well for you.

 

:grouphug: Kelli.

 

The idea that the problems aren't real and will just go away with "better" parenting or teaching is unhelpful and offensive.

 

Our younger son has some sensory issues with loud and chaotic sounds. Today at his music class, one of the other parents commented to me that he probably has problems with it because "you must keep your house really quiet all the time". :banghead: The kicker - she is a preschool teacher :ohmy: - someone I would expect to recognize and understand it. Fortunately the music teacher recognizes his problem and does not blame me for creating it.

 

Thank you, both! :grouphug: I need to just stop worrying about what other people think, except you two, of course.:D

[~cindy~]

 

Let's flip this. It's the responsibility of the NT person living with you to "get" it? Wouldn't that be such a luxury? Wouldn't that be beyond reasonable and extremely unlikely? Even if the person wants to, they're likely only to get it to an extent, meaning it really is back on the non-NT. I don't know, I've just found NT's to have sort of limited ability to grasp anything beyond their experience. It's sort of an inverse blindness and limitation. So the non-NT has to understand BOTH the NT and themselves, but the NT doesn't even bother to grasp himself. Go figure.

 

Just jumping in here as the wife of an Aspie. It is up to us to 'get' it. All the Aspie marriage counseling books tell us so. While I'm not exactly NT either, I have ADHD, it is up to me to make the leap to understand my husband because it is not a matter of him being able to change...he can't, so it MUST be me to make the leap. You are completely right, in my experience, of NTs not being able to grasp this, they think that my husband should be able to change, that somehow he should be able to change the way his mind is wired. People will only make themselves unhappy if they don't grasp this....Aspies are not NT and never will be able to be NT, they can mimic etc but their brains are wired differently.

 

Sorry I'm probably rambling here. I'm ill ATM I hope I even understood the question:rofl:

[PeterPan]

Cindy-Good point! I think I was talking about two sides of the coin. The NT should try, but the other side shouldn't be shocked when they don't get it. Welcome to the boards! :)

[Momto4nmore]

I too saw this You Tube posted by a home schooling friend of mine locally. It broke my heart as I watch my little ones go through their "issues". But yet wherever I go,I frequently(mostly) hear "oh they are just young, all kids their age are like that". Well I guess my quack Drs at Mass General have no clue and are over educated but hey if you want to train up my children God Bless you and good luck!

Sorry, have anger still from the 1 hr I tried to spend at our local Social Security office. I was trying to drop off paperwork for my son and of course had to wait just to hand it to them. In the meantime my PDD child and ADHD/Bipolar child went nuts trying to maintain themselves. True I should have not brought them, but seriously did not think I would have to wait to drop off paperwork! So 1/2 hr in, the security guard comes out and tells me of course htey can sit quietly in the chairs(LOL). And then he proceeds to tell me how his 3 boys would not dare act that way with him. I tried to say well my son here is the reason we are here which means his has a disability and it affects his comprehension and obedience, but after a few breaths I gave up and went home. BTW I did call them by phone and tell them how unhappy I was at our treatment at a facility for people with disablities!

I am so no longer willing to open up about their conditions anymore.