Would you point out to a friend if you thought their child has Aspergers

[Aspasia]

Hmmm...I guess I'm the oddball. I have a good friend, to whom I am close enough to know that autism hadn't even crossed her mind with regards to her 2-year-old's quirky and difficult behaviors. I have spent a limited time working with autistic kids. I spend a lot of time with this friend and her children. I was thinking for a couple months that something wasn't quite right with her eldest and i agonized over how to bring it up with her. She was talking one day in generalities about his behavior and I gently mentioned that he does have some concerning behaviors. I also gently suggested that she just ask her ped about it. She did, and her DS was diagnosed quite swiftly. He is now going to an early-intervention preschool, which is going really well. She is getting needed breaks every day, she's learning from his therapists how to cope with his behaviors. It has been nothing but positive. I'm so glad I said something, and so is she.

 

To me it isn't about offending the parent, it is about honoring them as an adult and respecting their right to privacy. How do you honestly know someone isn't doing something about it or hasn't already sought help? Do you know how exhausting it is to get help and get a diagnosis?

My own child has gone through screening multiple times over the past nine years, all with the same 'negative' diagnosis. Yes, I know he has quirks. Yes, I know he is different. It doesn't make me unaware or unmotivated because I haven't shared with you (you, in the general sense) what we have gone through to get him tested.

 

See, this is getting at what I think is the key. "How do you honestly know someone isn't doing something about it or hasn't already sought help?" Well, if I'm not close enough to someone to know that, then no. I would never suggest it. And I definitely wouldn't suggest it based on just one night's behavior. But if you're really close to someone and you have concerns that last for several weeks--concerns you know they haven't thought of--I think a good friend DOES speak up. What if my friend's little boy made it all the way to kindergarten before he was diagnosed? What if he even made it to age four? He would have missed out on the help he s receiving now, and so would she. And i would hate myself.

 

I just think it has to be dealt with wisely and delicately.

[LucyStoner]

My point is more that some people still shrink away from a diagnosis even if a doctor raises concerns.

 

I agree with you but that is sort of like the parent feeding their obese child a constant stream of junk. They are not going to hear whatever you say if they are resisting medical help. But maybe, perhaps, if you stay around and be supportive, they might lean on you when they are ready to face the truth. I have a friend whose husband is obese, she is overweight and their daughter is quite obese at age 5. Now that the mom is trying to make changes and asked for shopping and cooking advice, I am helping her. But 2 years ago, had I offered up the same information (eggs are a better breakfast than danish and koolaide etc) it would have been both alienating and useless. If you don't know someone well enough to know if they are seeking help, then you dot know them well enough to make assumptions. And unless you are the clinician reviewing their case, you have no business offering up a diagnosis.

[Farrar]

My kids' pediatrician said many parents insist to her that that's just how their child is, they're just quirky, and decline further medical intervention. And in several threads, many parents have said they avoid check ups/ well child exams, so there is a potential for hiding from the truth.

 

Oh, very true. But a pediatrician only sees the kids once or twice a year for a few minutes in a situation where kids may be worried about shots and so forth.

 

One time we went for our check up and one of my ds had just smacked his head coming out of the pool and was all worked up about it (he had just turned 5, I think, and wasn't a strong swimmer and had gotten a scare). Then we go to the appt and get the other doctor, the one who doesn't know my kids as well and my kids were profoundly disappointed because they really wanted to see the other practitioner. Plus, they knew they were going to have to have blood drawn. Anyway, by the end, my ds was being completely NUTS. And the doctor was clearly concerned. But what am I supposed to say? I mean, yes, if that was typical behavior and not an alignment of bad stuff... But how can you say that without sounding like you're just in denial?

 

That's why I think teachers are actually much, much better at catching real issues with a kid. A professional has to do the testing and make the real diagnosis, but I think it's the adults who see the kid every day who can see when something isn't right. Usually that's the parents, obviously, but every once in awhile, it's not.

 

And that's why I think we may, as a homeschool community, have some extra obligation to speak up when something really does seem "off" about a child. But I think it has to be a child we really know pretty well. Most of us aren't qualified to actually diagnose anyone and crying "autism" every time a kid you've seen twice can't meet your eyes or "sensory processing disorder" every time a new kid is chewing on his coat is a bit presumptuous. And why it has to be done sensitively.

 

If parents are going to live in denial, they're going to live in denial, of course. There's only so much that can be done.

[stripe]

Oh, very true. But a pediatrician only sees the kids once or twice a year for a few minutes in a situation where kids may be worried about shots and so forth.

In this case, the doctor meant, the parents knew their kid was not normal, all the time, but preferred to think of the child as quirky and not seek further intervention. And, although I have been frustrated by this office, I have to say, she and the office in general have made an effort to not be that sort of medical experience, so I don't personally feel that she's making snap judgments with no evidence or is in a rush to subject kids to unnecessary treatment. And I have seen a lot of parents prefer to ignore obvious symptoms because they make them uncomfortable. I mean, mothers of kids with food allergies had a thread recently, about how hard it is to deal with this, and I have seen this with people, say, not going to the doctor when they find a lump on their breast. There is some perceived safety through ignorance.

[LibraryLover]

I would not.

[Catwoman]

Personally, I think it's quite presumptuous when people attempt to diagnose other people's kids.

 

I had a friend who went on and on about how she'd been a teacher, and how she could tell when kids had "special needs" and "learning disabilities" just because they didn't happen to enjoy her little crafty Sunday School projects.

 

And she would be sure to tell the parents all about their kids' supposed deficiencies... in a very kind, sweet, and incredibly knowing tone of voice.

 

Talk about condescending. :glare:

 

And because she acted like such an authority -- in a very understated and Christian way -- she scared a few parents half to death that there was something dramatically wrong with their children... you know, because they didn't like to sit and do crafts. :rolleyes:

 

Honestly, the kids were all perfectly fine. This woman had her own vision of what children were supposed to be like, what they should enjoy, and how they should behave... and if a kid didn't fit the mold, he or she was in serious need of intervention.

 

She may have meant well, but I always secretly thought she got a thrill out of being considered An Authority About These Things.

 

So, Quill... my vote is to say nothing unless the parent specifically asks you if you think there's anything unusual about their child. You have a few suspicions that may or may not be accurate, but I don't think you have enough information to be sure about anything, and I can't really imagine that the parents would take it well if you said something, anyway.

[Heather in Neverland]

 

One would hope every parent recognizes conditions or delays their children may be having, but such is not always the case. Often it is the school system and teachers that come to (utterly surprised) parents with concerns. I understand that for a parent that is totally on top of their child's situation being reminded their child is different by another parent might not make their may, but dealing with that in an adult fashion—and understanding that it takes some moral courage to advance the topic with another parent—is in the best interests of children.

 

Sitting around with unaddressed concerns while children go without support is a terrible alternative.

 

Bill

 

:iagree:

 

I am a very well-educated person. However, referring back to my earlier post about my oldest ds, he was our first child. He was also the first grandchild on both sides of the family. We were the first in our group of friends to have children. I taught high school, not elementary. Ds did not go to preschool until age 3 so there was very little interaction with other children.

 

So really, I had VERY little idea of what "typical" looked like in a 3yo. I knew he was a handful but I didn't know that his behaviors were so atypical until someone with a lot more experience with children pointed them out to me.

 

And as Bill has pointed out, I was instantly offended. But I was foolish.

 

There is NOTHING WRONG with listening to the advice and concerns of others. It may turn out that they are completely off-base. But you could also get some really helpful ideas you may not have considered.

 

Everyone needs to stop being so easily offended. Even as a mother you DON'T know EVERYTHING. And some people really are just concerned. Is that such a crime?

 

 

.

[Celia]

A friend pointed out to me that she thought my son might have aspergers, just as she suspected her husband did. I'm thankful she mentioned something. I'd not heard of it before, and talked to our doctor who referred us for an evaluation where he was diagnosed. He wouldn't have had access to nearly so many resources without the diagnosis, so I am very grateful she mentioned her concerns.

[*Lulu*]

Personally, I think it's quite presumptuous when people attempt to diagnose other people's kids.

 

I had a friend who went on and on about how she'd been a teacher, and how she could tell when kids had "special needs" and "learning disabilities" just because they didn't happen to enjoy her little crafty Sunday School projects.

 

And she would be sure to tell the parents all about their kids' supposed deficiencies... in a very kind, sweet, and incredibly knowing tone of voice.

 

Talk about condescending. :glare:

 

And because she acted like such an authority -- in a very understated and Christian way -- she scared a few parents half to death that there was something dramatically wrong with their children... you know, because they didn't like to sit and do crafts. :rolleyes:

 

Honestly, the kids were all perfectly fine. This woman had her own vision of what children were supposed to be like, what they should enjoy, and how they should behave... and if a kid didn't fit the mold, he or she was in serious need of intervention.

 

She may have meant well, but I always secretly thought she got a thrill out of being considered An Authority About These Things.

 

So, Quill... my vote is to say nothing unless the parent specifically asks you if you think there's anything unusual about their child. You have a few suspicions that may or may not be accurate, but I don't think you have enough information to be sure about anything, and I can't really imagine that the parents would take it well if you said something, anyway.

 

I had to laugh at the bolded statement. With the exception of some specially trained SPED teachers, most teachers are basing their recommendations for referrals on some small training and their personal experience. IME, students with glaring educational deficits will likely be referred while students who are marginal will most likely be missed, even if there is evidence that "something" is off, even if the parent is saying their student needs help.

 

I took all the required SPED training/coursework for my degree/certification and worked primarily with students who were behind, many if them due to LDs in the years before I left the workforce. Even with my training and experience DS was almost 8 before we realized "something" was wrong, was 9 before we began to figure out what the problem was, and was 10 before we were able to convince a pediatrician that we needed intervention.

[LucyStoner]

I think it is overreaching to characterize parents who may be hearing the same uneducated diagnosis over and over again as "highly offended" and overly sensitive. If a babysitter or someone who has ongoing personal interactions with a child makes a suggestion to seek some evaluation (NOT a diagnosis), yeah parents are wise to listen and not get offended. But what is far more common is some "helpful" person with limited information stating point blank, often in your child's presence, that they think your child has X. Being exhausted of that is not being overly sensitive. Especially not when you already have your kid making the OT, PT, ST and specialty clinic rounds and are being told about 87 different things. And moreover when you give a simple answer which indicates you are aware and they argue with you or demand to know if you vaccinated or if anyone in the family has it or if you have read Jenny mcCarthy's book, since she "cured" her child with a diet or tell you to watch Big Bang Theory since "he's really smart." Um ok. Can I ask you about your child's medical conditions now and tell you I think your approach is lacking or reference something I saw in a movie about it? Oh wait, I would never do that.

 

It was genuinely helpful to get insight from my son's sitters and extended family etc. Insight and observations from people with actual knowledge of the child are not diagnosis nor are they necessarily unwelcome. However, that is not what most people are doing when they "reach out".

Edited November 3, 2012 by kijipt

[Celia]

After reading a couple of previous posts, I just want to say that I had noticed delays and differences in my son from very early on. He was in speech therapy and occupational therapy. Even after spending significant amounts of time with these professionals, none had suggested an asd assessment. He did great in one on one sessions, so his asd symptoms werent nearly as pronounced. It took a friend who knew him and was familiar with aspergers to see the full picture and put a name to it.

 

I was personally not being familiar with how much variety there is on the autism spectrum, and my son didn't fit into what I would have thought the profile to be. My son had such difficulty with sleeping, and I thought most of his delays and behavioural issues were related to that. I had no idea that sleeping problems were a symptom of asd.

 

I would personally risk offense and talk to someone if I suspected autism. Such progress can be made with early intervention. The friend that raised her concerns about my ds did both of us a huge favour.

[Samiam]

I think it is overreaching to characterize parents who may be hearing the same uneducated diagnosis over and over again as "highly offended" and overly sensitive. If a babysitter or someone who has ongoing personal interactions with a child makes a suggestion to seek some evaluation (NOT a diagnosis), yeah parents are wise to listen and not get offended. But what is far more common is some "helpful" person with limited information stating point blank, often in your child's presence, that they think your child has X. Being exhausted of that is not being overly sensitive.

It was genuinely helpful to get insight from my son's sitters and extended family etc. Insight and observations from people with actual knowledge of the child are not diagnosis nor are they necessarily unwelcome. However, that is not what most people are doing when they "reach out".

 

:iagree: I posted several pages back that I would be upset if a casual friend tried to diagnose my child. I am not offended, nor overly sensitive, but if you are truly a good friend, one that is close enough to me and around my family and children often, you've seen my child in various situations, then likely I've told you a bit about my life, told you my concerns (if we have any), told you that we are seeking medical options because those are the type of conversations GOOD close friends share with each other about their lives. If I haven't told you any of this, then I don't consider you close enough to let you in our struggles and then I wouldn't appreciate you trying to diagnose my child because I don't feel the need to have to explain him to you. It's not about being offended. It's about the fact that you are not a trained professional and are simply pulling from internet stories to potentially give someone worries that may not be necessary. If you were have some training in this field, and some actual experience, then that's a whole nother ball of wax. As a friend and TRAINED PROFESSIONAL, please, kindly let me know your concerns, and I am all ears! As just a mom who doesn't think my child acts the same as yours, well, I don't need your Dr. Internet diagnosis. I am not offended. I am just being honest with you. There's a difference. If you want to play Dr. Internet, then be do be prepared for the good, the bad, and the dont-think-you-know-what-are-talking about reactions. You might be coming from a good place, no doubt, but that doesn't mean it's the right thing to do.

 

NOTE: I just re-read the whole thread, and in my original post, I did say I would be offended. Wrong verbiage, I guess, because offended is not the right word so much as just shocked that a casual friend would deem to be knowledgeable about my child based on one night, and a rather unusual night of TOTing at that.

Edited November 3, 2012 by Samiam

[*Lulu*]

From kijipt: Insight and observations from people with actual knowledge of the child are not diagnosis nor are they necessarily unwelcome. However, that is not what most people are doing when they "reach out".

 

 

:iagree:

[1GirlTwinBoys]

No, it's really not your place to do that.

[Garga]

I would not be offended at all if you pointed out your observations. But I guess I'm in the minority.

 

But, OP, I had your same issues--my oldest has ADHD and he also probably had acid reflux as a baby (cried ALL THE TIME), but being that he was my first and I'd never been around children, I had no clue that his behaviors were different from the norm.

 

If only someone had told me (over the screaming baby), "Has he been checked for acid reflux?" I might have had more than 45 minutes of sleep at a time each night for a year. I thought that all babies cried for hours upon hours every day and and night and didn't sleep more than an hour at a time. I didn't know any better.

 

If only someone had said, "Wow! Your little guy is pretty hyper. Does he have ADHD?" I could have started handling the issue properly, with graceful redirection, etc, instead of thinking he was being willfully defiant.

 

And yes, my MIL has pointed out simple observations to me about my kids, and I've listened to her and have made adjustments in the way I parent them. Because she's been right! And she was far enough from the situation to see it where I was too close and missed it.

 

So...I vote for saying something to the parents, esp. since the father opened the door about it. But, according to everyone else, that would be the wrong thing to do.

 

P.S: I'm not sure a pediatrician would have time to dx aspergers in the 5 minutes they're with the child. And what if the child is homeschooled so there are no preschool teachers giving feedback? These parents might not know for years if there's a problem.

 

P.P.S. I also think it's a little strange that people keep saying "You're not trained to dx this," but at the same time, we're generally the type of people who don't believe that you have to have "special training" to do things--like educate another person. We also have a thread on here at least once a week about "doctors who can't diagnose their way out of a bag." So, which is it? Are only professionals allowed to give any opinion? Or are we all mature and observant enough to form our own opinions? (Saying this with curiosity and not judgement.)

Edited November 3, 2012 by Garga

[Catwoman]

Everyone needs to stop being so easily offended. Even as a mother you DON'T know EVERYTHING. And some people really are just concerned. Is that such a crime?

 

Yes. Sometimes it is. Because just because they are concerned doesn't mean that they have the slightest clue.

 

I don't think most people would be offended if a comment was made by a very close friend who knew a particular child very well, but that's not always the case, and sometimes the parent has every right to be offended. I know a woman whose ds has some issues, and she is so sick and tired of hearing people she barely knows provide her with very detailed diagnoses of what is "wrong" with her child, and what she should be doing to help him, all usually delivered with either pitying smiles or condescending nods. The most bizarre was a complete stranger at the food court in the mall, and she was extremely opinionated and rude about it... and after the big lecture, it turned out that the stranger was talking about the woman's dd, who happened to be grouchy because she was over-tired, not her ds, who had some legitimate issues. :rolleyes:

 

This particular woman's ds has been diagnosed with some problems (nothing particularly serious, BTW,) but she said that only one person ever came remotely close to being correct about his issues. The rest apparently saw something on TV or the internet or "knew someone whose kid had the exact same thing and it was XYZ and it was HORRIBLE." :glare:

 

So unless you're very, very close to a parent, and know the child very, very well, and you have lots and lots and lots of experience with the particular condition you believe you believe that child may have... you should probably keep your mouth shut about it unless the parent specifically asks for your opinion.

Edited November 3, 2012 by Catwoman

[Arcadia]

His dad remarked that he "gets like that," where he won't follow instruction or acts like he can't hear instructions.

 

So...I vote for saying something to the parents, esp. since the father opened the door about it. But, according to everyone else, that would be the wrong thing to do.

 

Not sure if you are referring to OP's above quote when you say the father open the door about it. Don't know if it is a cultural difference but when someone says "gets like that", it is more of a conversation closure than opener. Since we do not know the tone of the dad when he say it, it is hard to say if he is just exasperated and don't wish to discuss or he is open to suggestions.

[Catwoman]

Not sure if you are referring to OP's above quote when you say the father open the door about it. Don't know if it is a cultural difference but when someone says "gets like that", it is more of a conversation closure than opener. Since we do not know the tone of the dad when he say it, it is hard to say if he is just exasperated and don't wish to discuss or he is open to suggestions.

 

:iagree:

 

I think the dad was just making an offhand comment, not looking for input.

[ChristineW]

Not every kid likes to trick or treat. Dad noticed the kid was tired; he'd probably had too much and his parents should have taken him home. Our three year old came home from ToT and just sat on the floor staring for several minutes. Clearly, her circuits had been overloaded, and she's my most neuro-typical kid.

On a more personal note, I have never done well with trick or treating. There are too many people, too much noise, and the weird lighting can trigger headaches. I find it overstimulating and I tend to withdraw inwards and zone out. I probably do have a mild sensory processing disorder, but I definitely do not have autism.

 

If you've observed him on other occasions where he doesn't interact with other kids or where his emotions are inappropriately flat, then I'd consider saying something then but not based on Halloween.

[Georgiana Daniels]

I haven't read the other responses, but no...I wouldn't. Not unless my friend asked my opinion, and even then I'd make sure they really wanted to know what I thought.

 

People get funny about comments made about their children. And I'd feel weird if someone told me something about my kids that I wasn't necessarily ready to hear.

 

Unless that child is adversely affecting your kids or if they are putting themselves in danger, I'd hold my peace.

[SKL]

:iagree:

 

And as Bill has pointed out, I was instantly offended. But I was foolish.

 

There is NOTHING WRONG with listening to the advice and concerns of others. It may turn out that they are completely off-base. But you could also get some really helpful ideas you may not have considered.

 

Everyone needs to stop being so easily offended. Even as a mother you DON'T know EVERYTHING. And some people really are just concerned. Is that such a crime?

 

 

.

 

That is wise as far as a self-improvement goal. But we're talking here about how Quill should deal with her friend. It's not up to us to force our friends to accept or appreciate something they are not ready for. We all know it can harm a friendship, depending on the circumstances.

 

And also, I really don't see how observing a child for one night - a very weird night on many levels - can inform a person whether the child has autism. One of my dds is as mellow as you can imagine for her age, and yet there are times when she acts weird. Sometimes it's because she's putting on an act (something understandable when in costume), sometimes because she's very stressed out, and sometimes just because it seems like fun. Also, neither of my kids would respond to strangers when they were 4 unless I sternly reminded them.

 

If there really is enough evidence to suggest that an eval is in order, it should be approached gingerly and based on specific concrete observable facts. In the case of my nephew, he would answer questions by calling up from memory something he'd read, but had a really hard time forming his own original response. (Still does.) I observed this (in an "I'm getting to know your son" way) to his mom, i.e., "is he reciting something he's read? Does he do that a lot?" But I did not offer conclusions. And also, it's important to show acceptance rather than just "concern." It's more about planting the seed of awareness if the parent isn't aware. After that the parent may open up and want to talk more.

 

But that also depends on the existing relationship with the friend.

[texasmama]

P.P.S. I also think it's a little strange that people keep saying "You're not trained to dx this," but at the same time, we're generally the type of people who don't believe that you have to have "special training" to do things--like educate another person. We also have a thread on here at least once a week about "doctors who can't diagnose their way out of a bag." So, which is it? Are only professionals allowed to give any opinion? Or are we all mature and observant enough to form our own opinions? (Saying this with curiosity and not judgement.)

 

Wanted to respond to this. I have the college degrees and professional experience and license to give a diagnosis of Aspergers. I still don't do it, not even with therapy clients. I refer out for further evaluation if I am concerned about a child being on the ASD who has not been diagnosed.

 

A fine distinction exists between someone close to the situation offering up a possible diagnosis versus offering observations based on specific behaviors. The former is inappropriate in almost every situation. The latter can be very helpful.

[Stayseeliz]

I did tell a friend after knowing her for years that I thought her son would fall in the aspergers range. Having worked with an autistic child in grad school I saw a lot of the same issues. I waited for a very natural time to do it though. I didn't just blurt it out.

[Mergath]

I think there is a problem with "the culture of outrage" that makes people way too defensive and too easily offended when people attempt to be kind, caring, and compassionate. Good grief.

 

Bill

 

Very true. But we also have a problem with the culture of lay-doctors-certified-via-Google. People spend ten minutes on autismspeaks.org and think half the kids on the planet have autism, and that they need to inform their parents immediately. My dd has a genetic disorder that left her with a one-in-three chance of being on the spectrum, and believe me, it's no fun to lie awake at night, going over everything your child did during the day and trying to figure out if there were any autism red flags. If I knew the kid well and it was really, really obvious there was a problem I might say something, but otherwise, I'm not going to cause someone to worry needlessly.

[kubiac]

Sorry to dredge up this thread again, but today I encountered an interesting article at the news stand that I thought might be germane to this discussion. It discusses Asperger's as a "trendy" diagnosis and what the term means to us as a society these days:

 

Wallace, Benjamin, "Is Everyone on the Spectrum?," New York magazine, Oct 28, 2012

[Laurie4b]

No, I wouldn't say anything. I think a good pediatrician would pick up on the things you mentioned, if they are severe enough to be concerned about. Our pediatricians note things about my kids and ask further questions.

 

My experience is such that I wouldn't count on it. I actually can't think of anyone I know whose kid is on the spectrum whose doctor brought it to their attention rather than vice versa. I know physicians who didn't recognize it in their own child for a while.

[Catwoman]

Very true. But we also have a problem with the culture of lay-doctors-certified-via-Google. People spend ten minutes on autismspeaks.org and think half the kids on the planet have autism, and that they need to inform their parents immediately. ... If I knew the kid well and it was really, really obvious there was a problem I might say something, but otherwise, I'm not going to cause someone to worry needlessly.

 

:iagree: :iagree: :iagree:

[Catwoman]

Sorry to dredge up this thread again, but today I encountered an interesting article at the news stand that I thought might be germane to this discussion. It discusses Asperger's as a "trendy" diagnosis and what the term means to us as a society these days:

 

Wallace, Benjamin, "Is Everyone on the Spectrum?," New York magazine, Oct 28, 2012

 

 

Thank you for posting the link. The article was very interesting! :001_smile:

[Murphy101]

My experience is such that I wouldn't count on it. I actually can't think of anyone I know whose kid is on the spectrum whose doctor brought it to their attention rather than vice versa. I know physicians who didn't recognize it in their own child for a while.

 

Okay. Maybe this is a separate thread topic... But my question then is this:

 

If it is so mild or able to be coped with as to not even be "recognized" by those the child is with every day, then it sounds to me like it doesn't need a dx, much less treating via whatever methods?

 

If the child is doing okay in school, at home, and seems otherwise happy - then I don't see a problem.

 

Maybe someone can explain why that's a problem to me?

[Jennifer3141]

Very true. But we also have a problem with the culture of lay-doctors-certified-via-Google. People spend ten minutes on autismspeaks.org and think half the kids on the planet have autism, and that they need to inform their parents immediately. My dd has a genetic disorder that left her with a one-in-three chance of being on the spectrum, and believe me, it's no fun to lie awake at night, going over everything your child did during the day and trying to figure out if there were any autism red flags. If I knew the kid well and it was really, really obvious there was a problem I might say something, but otherwise, I'm not going to cause someone to worry needlessly.

 

 

:iagree::iagree::iagree:

 

The lay doctors from google drive me nuts. I especially love it when empty-headed actors and actresses become "experts." :lol::lol:

[Night Elf]

(Haven't read the other posts, but...) I would only dare to point out the possibility if I were someone who really understood Aspergers and had dealt with a number of Aspie kids. I would not do this if I had just read about Aspergers somewhere and thought the child might fit the symptoms. Such a presumptuous suggestion needs to come from someone with credibility.

 

:iagree: This actually strikes very true IMHO. My ds16 has Aspergers and I don't think I could necessarily suggest another child have it. Symptoms present so differently in different kids. I've read so much because I haven't had medical help. Even then, I don't feel qualified to just make a suggestion based on behaviors. I still don't understand it all myself. It's interesting to talk to others on this board about their Aspie kids. My child doesn't sound just like any other child. Even socially, he is not the most outgoing child but he had no problem having a best friend, and he can interact with anyone on an as needed basis. So I don't think all Aspies look alike.

 

ETA: I didn't word this well. My son was officially diagnosed at age 9 by a child psychiatrist. It's just that she didn't see any need for any type of treatment. When I continued to bring it up, she finally suggested I have him evaluated by the school system. The school system wouldn't evaluate him because he was homeschooled. I had a bad experience with an autism center. I was just truly on my own. Reading books gave me more information than any of the professionals I talked with. So I feel sort of schooled in Aspergers but really only in regards to my son. I read the books with a filter of trying to help my son, not just any kid on the spectrum. So while I sought help many times, I simply didn't find it. And I started it all when he was 4. It's possible that others have been through the same experience.

Edited November 4, 2012 by Night Elf

[Leonana]

I would say no, because my experience of speaking up involved a lot of drama and backstabbing.

 

In my case, this involved a mom who had made comments that she suspected her dd had ADD. Later, her dd was accusing my dd of doing and saying things that she hadn't done. I mentioned that perhaps her dd needed some professional help. I thought I was helping her dd, who didn't seem to be getting any help, and trying to protect my own dd.

 

Let's just say it didn't go over well, and she went around telling other people that I had accused her dd of having a mental problem. :rolleyes: And this was six months after I made the remark!

 

From people she was talking to, I learned she expected an apology from me. I did apologize for my remark, partly because I felt sorry for her, and partly because I realized I had made a mistake mentioning it. Fortunately, it ended the drama, as far as I can tell.

 

I believe that there are some kids out there that need help. However, if the parent does not want to recognize it, then you will be the bad guy. Regarding ethics and/or bravery in addressing this, I think you will actually push these type of parents into more denial. I'm not sure what it would take to reach this type of parent, but I don't think I have the means to do it.

Edited November 4, 2012 by Leonana

[Night Elf]

Okay. Maybe this is a separate thread topic... But my question then is this:

 

If it is so mild or able to be coped with as to not even be "recognized" by those the child is with every day, then it sounds to me like it doesn't need a dx, much less treating via whatever methods?

 

If the child is doing okay in school, at home, and seems otherwise happy - then I don't see a problem.

 

Maybe someone can explain why that's a problem to me?

 

That might make a good separate post. I know that others on this board talk about treatment their children are/were receiving but no one ever thought my son could be helped by anything. His problems seem like obstacles to me but I'm told they are par for the course. I'm not sure that my son's official diagnosis has ever truly been helpful beyond helping us understand his tics, or behaviors if you will. They bothered him immensely. We learned how to compensate for them especially because we knew there was a medical reason behind them. Well, I guess it was also helpful in giving me a name for what was going on. I knew something wasn't right but without validation I couldn't figure out if there was anything we could do to help his problems. After his diagnosis, I read and read and things started to fall into place. It did help me to understand him a bit better and to know I'm not alone. But it's never been medically helpful for us.

[SKL]

Okay. Maybe this is a separate thread topic... But my question then is this:

 

If it is so mild or able to be coped with as to not even be "recognized" by those the child is with every day, then it sounds to me like it doesn't need a dx, much less treating via whatever methods?

 

If the child is doing okay in school, at home, and seems otherwise happy - then I don't see a problem.

 

Maybe someone can explain why that's a problem to me?

 

I was thinking the same thing, but not knowing how to word it.

 

I mean, we are all different. When we were kids, there was no "Aspergers." There were nerds and geeks and absent-minded professors and otherwise awkward kids. After a certain age, I think it's probably good for kids to understand that the reason a normal social conversation is so hard for them has to do with their physical wiring. But that doesn't always mean they need early intervention. If the child flies under the radar of all the people charged with his care (parents, teachers, doctors), then maybe it's not a tragedy.

[Night Elf]

I was thinking the same thing, but not knowing how to word it.

 

I'll try it since I'm a parent of an Aspie.

[Dmmetler]

I was thinking the same thing, but not knowing how to word it.

 

I mean, we are all different. When we were kids, there was no "Aspergers." There were nerds and geeks and absent-minded professors and otherwise awkward kids. After a certain age, I think it's probably good for kids to understand that the reason a normal social conversation is so hard for them has to do with their physical wiring. But that doesn't always mean they need early intervention. If the child flies under the radar of all the people charged with his care (parents, teachers, doctors), then maybe it's not a tragedy.

 

 

I think part of the problem is exactly what the article states-that Aspergers as a label is being used for far more than a clinical DX.

 

I can tell you that some of the symptoms that most puzzled and bothered me at age 2-3, that were ruled to NOT be ASD specific no longer exist for my DD. If she'd been DXed with aspergers and given EI, I'd credit the EI. As it stands, since she was deemed to not qualify, but to, basically, be a smart, quirky kid, now I can say that yes, the DX that she WASN'T aspergers is probably right, and I'm a lot more willing to accept that the quirks she still has are part of her personality, not aberrant traits that need to be stamped out. It doesn't mean that she can't be a jerk or react badly (says the mom who's child yelled at a 3 yr old for daring to touch one of her lego dragons)-it just means that when she is, it's not due to a disability, it's due to being a jerk or reacting badly to a situation.

Edited November 4, 2012 by dmmetler

[wonderchica]

Okay. Maybe this is a separate thread topic... But my question then is this:

 

If it is so mild or able to be coped with as to not even be "recognized" by those the child is with every day, then it sounds to me like it doesn't need a dx, much less treating via whatever methods?

 

If the child is doing okay in school, at home, and seems otherwise happy - then I don't see a problem.

 

Maybe someone can explain why that's a problem to me?

I'll take a stab at this one.

 

I work in early intervention. It's not necessarily children who are very mild. I work with families (including educated ones- people who are teachers or even pediatricians themselves) every day who do not recognize the symptoms of autism or other serious issues in their children. Things like severe physical delays or neurological impairments. VERY obvious symptoms and differences. There is a LOT of denial and excuse making- "Oh, well, my cousin didn't talk until he was 5, and he turned out okay" or "Kids have their own timeline, he'll walk when he's ready [said when the child is 16 months and isn't walking OR crawling]". Parents I work with often say their family repeatedly told them their child was just fine, so they chose to believe them. Parents who have children on the spectrum or who have other delays usually go through a grief process, some of which may start before the official diagnosis. It's a scary thing, and a lot of parents take a "wait and see" approach and hope their kids will grow out of whatever it is. I have seen parents flat out refuse to believe a diagnosis of autism even when their child is very "classically" autistic- spinning, flapping, meltdowns, no eye contact, non verbal. I don't think it is just children who are so mild it's not really a problem.

[sparrow]

Sorry to dredge up this thread again, but today I encountered an interesting article at the news stand that I thought might be germane to this discussion. It discusses Asperger's as a "trendy" diagnosis and what the term means to us as a society these days:

 

Wallace, Benjamin, "Is Everyone on the Spectrum?," New York magazine, Oct 28, 2012

 

The forum outage gave me the opportunity to read this article :D. It was very interesting and reminded me of when my ds was diagnosed with PDD-NOS 4 years ago. I asked the psychologist, "So is this just an official medical term for all of the quirky kids I went to school with back in the day?" He smiled, sighed, and said, "Yes, you could probably say that."

 

I see spectrum traits everywhere now, but I question, is it really something medical/mental or is it just nerd/geek traits? My son is often in his own little world. He is always thinking and that can make him seem socially aloof. At other times, if it is a subject that interests him, he is a leader in group situations. I picked him up from a class yesterday and the instructor said, "I think you have an engineer on your hands." I so badly wanted to ask, "is it because he's good at building or is it the way he acts?!"

 

I am now not convinced my son has PDD-NOS. At the time I took him for an evaluation, I knew he was different and I suspected LDs. I now just think he's a bright, quirky kid, with LDs.

[wapiti]

With regard to the considerable professional expertise involved in diagnosing spectrum disorders, it is worth noting the alphabet soup of other possibilities for such behavior, such as SPD, CAPD, ADHD, etc., as well as the fair possibility that the behavior is within the range of normal for age. Aspergers is far from the only possibility. One helpful book attempting to delineate the similarities and differences between such diagnoses and autism is the Eides' The Mislabeled Child. Accordingly, if a casual observer felt compelled to say something, suggesting an evaluation (with, e.g., a neuropsych or developmental pediatrician) would make much more sense than assuming a diagnosis that is just one possibility among many. This is just a point that has been in the back of my mind about this thread and underscores the inappropriateness of armchair diagnosis.

[SKL]

a lot of parents take a "wait and see" approach and hope their kids will grow out of whatever it is.

 

My daughter had some concerning traits when she was a tot. The reason I chose not to get her professionally evaluated at that time was the reaction she had whenever she had to deal with a new person - especially one who got in her face and asked her to do or say something. She would shut down and revert to an infantile stage. There would be no speech, little eye contact, no cooperation with requests, etc. The evaluation would be completely inaccurate, and any recommended therapy unlikely to be appropriate to her actual needs. Plus, the introduction of another caregiver-type would upset her emotionally and create a developmental setback. So I waited.

 

As she got older, a lot of the traits stopped appearing, and some did not. As a preschooler, she was able to cooperate with evaluations and she started to get appropriate help.

[texasmama]

Okay. Maybe this is a separate thread topic... But my question then is this:

 

If it is so mild or able to be coped with as to not even be "recognized" by those the child is with every day, then it sounds to me like it doesn't need a dx, much less treating via whatever methods?

 

If the child is doing okay in school, at home, and seems otherwise happy - then I don't see a problem.

 

Maybe someone can explain why that's a problem to me?

 

In many cases parents become so accustomed to accomodating their children that they don't really notice the behaviors which are outside the norm.

 

I had this experience with one of my own kids, and it took a speech therapist pointing out very specific behaviors (rather than suggesting a label or diagnosis) for it to become clear to me that my child had these behaviors. I didn't see my own child with an objective eye.

 

And you are very correct in that if a child is doing well and is otherwise happy, a diagnosis may not make a whit of difference in the child's long-term functioning.

[Spy Car]

With regard to the considerable professional expertise involved in diagnosing spectrum disorders, it is worth noting the alphabet soup of other possibilities for such behavior, such as SPD, CAPD, ADHD, etc., as well as the fair possibility that the behavior is within the range of normal for age. Aspergers is far from the only possibility. One helpful book attempting to delineate the similarities and differences between such diagnoses and autism is the Eides' The Mislabeled Child. Accordingly, if a casual observer felt compelled to say something, suggesting an evaluation (with, e.g., a neuropsych or developmental pediatrician) would make much more sense than assuming a diagnosis that is just one possibility among many. This is just a point that has been in the back of my mind about this thread and underscores the inappropriateness of armchair diagnosis.

 

I doubt anyone on this thread who tends towards voicing their concerns to another parent would support "playing doctor" or making an armchair diagnosis as it their observations were authoratative. I certainly wouldn't.

 

But if one sees things that leads one to believe a child would benefit by being evaluated (and has reason to believe that is not happening) is it better to say something to another parent, or to remain silent?

 

My sense of ethics is that it is better to approach the other parent in a compassionate and kind manner, as this is the course most likely to be in the interest of the child. That is not playing doctor, just being a caring human being.

 

Bill

[Murphy101]

But if one sees things that leads one to believe a child would benefit by being evaluated (and has reason to believe that is not happening) is it better to say something to another parent, or to remain silent?

 

My sense of ethics is that it is better to approach the other parent in a compassionate and kind manner, as this is the course most likely to be in the interest of the child. That is not playing doctor, just being a caring human being.

 

Bill

 

It's possible I suppose for it to be only done in concerned politeness. But in reality, I don't know that it is. Personally, I'm fine with a parent not taking my advice even when it's asked for, but most people aren't.

 

So, Bill, let's say you manage to approach them in that compassionate kind manner about how their child might benefit for an evaluation...

 

And let's say the parent nods their head politely and proceeds to do nothing. Or at least nothing that you ever become aware of.

 

You don't get a little ticked or bothered or whatever?

 

Because I have to tell you, in my experience most do. Considerably.

[Murphy101]

I'll take a stab at this one.

 

I work in early intervention. It's not necessarily children who are very mild. I work with families (including educated ones- people who are teachers or even pediatricians themselves) every day who do not recognize the symptoms of autism or other serious issues in their children. Things like severe physical delays or neurological impairments. VERY obvious symptoms and differences. There is a LOT of denial and excuse making- "Oh, well, my cousin didn't talk until he was 5, and he turned out okay" or "Kids have their own timeline, he'll walk when he's ready [said when the child is 16 months and isn't walking OR crawling]". Parents I work with often say their family repeatedly told them their child was just fine, so they chose to believe them. Parents who have children on the spectrum or who have other delays usually go through a grief process, some of which may start before the official diagnosis. It's a scary thing, and a lot of parents take a "wait and see" approach and hope their kids will grow out of whatever it is. I have seen parents flat out refuse to believe a diagnosis of autism even when their child is very "classically" autistic- spinning, flapping, meltdowns, no eye contact, non verbal. I don't think it is just children who are so mild it's not really a problem.

 

Hmmm. Okay well here is something that jumps out at me from your post. Now I'm not picking on you or anything, just sharing my own thoughts and POV.

 

Did they in fact have family that didn't walk or talk until very late and turned out fine? Because if they did, then I don't think that is being in denial or making excuses, which sounds very .... Derogatory? Which I don't think you intended to be. It sounds more like they are very aware and just don't think it is necessarily the big scare you think it might be? And if they do have family like that, then I can understand why they would feel that way.

 

I guess I just get frustrated by the jump to assuming they are in denial and making excuses. Kids with these tendencies and traits are nothing new to society. They have always been part of society. And most of the time they learned to cope, lived and grew just fine. So I can understand why a parent would have a wait and see approach or be skeptical that a child that seems happy enough and doing okay in school needs therapy.

[Catwoman]

I guess I just get frustrated by the jump to assuming they are in denial and making excuses. Kids with these tendencies and traits are nothing new to society. They have always been part of society. And most of the time they learned to cope, lived and grew just fine. So I can understand why a parent would have a wait and see approach or be skeptical that a child that seems happy enough and doing okay in school needs therapy.

 

:iagree:

 

IMO, there could not possibly be the ridiculously high percentage of kids that some "experts" consider to be "on the spectrum." For crying out loud, if you believe the statistics, you couldn't even walk down the street without bumping into a few kids with autism or Asperger's. :glare:

 

I think that many, many perfectly normal (but maybe a little quirky) kids are misdiagnosed as being autistic or as having Asperger's, simply because they don't fit perfectly into so-called professionals' neat little boxes that define how a "normal" child should behave. Sure, many evaluators are sensible and diligent, but others are overzealous and almost seem to want to find something wrong with every child they meet.

 

Honestly, I think the over-diagnosis is an insult to the parents of children who truly do have serious problems.

[Scarlett]

Honestly, I think the over-diagnosis is an insult to the parents of children who truly do have serious problems.

 

:iagree:

[GoVanGogh]

I hesitate to bring this post back up, since it has been buried for a few days. But I have some new thoughts on the subject.

 

With regard to the considerable professional expertise involved in diagnosing spectrum disorders, it is worth noting the alphabet soup of other possibilities for such behavior, such as SPD, CAPD, ADHD, etc., as well as the fair possibility that the behavior is within the range of normal for age. Aspergers is far from the only possibility. One helpful book attempting to delineate the similarities and differences between such diagnoses and autism is the Eides' The Mislabeled Child. Accordingly, if a casual observer felt compelled to say something, suggesting an evaluation (with, e.g., a neuropsych or developmental pediatrician) would make much more sense than assuming a diagnosis that is just one possibility among many. This is just a point that has been in the back of my mind about this thread and underscores the inappropriateness of armchair diagnosis.

I doubt anyone on this thread who tends towards voicing their concerns to another parent would support "playing doctor" or making an armchair diagnosis as it their observations were authoratative. I certainly wouldn't.

 

But if one sees things that leads one to believe a child would benefit by being evaluated (and has reason to believe that is not happening) is it better to say something to another parent, or to remain silent?

 

My sense of ethics is that it is better to approach the other parent in a compassionate and kind manner, as this is the course most likely to be in the interest of the child. That is not playing doctor, just being a caring human being.

I have already posted about my frustration trying to get an accurate dx on my child. He will be 11 soon and we have known since birth that something was different. He has been screened multiple times for autism in the past nine years.

I am honestly sick and tired of people trying to tell me something is wrong with my child or that they think xyz is wrong with my child. I know/knew something was different, but getting a dx is a long and frustrating process.

There really is an alphabet soup of dx out there, many of them with overlapping symptoms.

 

 

I think today - after 9 years of searching - we finally have an accurate dx.

No, it isn't autism, despite what every well-meaning person has tried to tell me over the years. Yes, we know he has SPD, but today we finally found out there is an underlying medical condition exasperating the symptoms. Yes, he is in constant motion but that is the medical condition not ADD or ADHD, like everyone tries to tell me.

While I am incredibly sad about the dx, I am so relieved to finally have a name to what is wrong.

And my thoughts about everyone who has suggested over the years that I should seek an evaluation for my child? Not once did they help us on this journey, they were only a source of frustration and added anxiety.

[TXMomof4]

I actually started to post about that the other day, then changed my mind. I know there have been posts in the past, asking if anyone had anything 'caught' by their doctor during a well-child visit. Many people have replied that they had. I am wondering the opposite: Anyone had anything missed?

 

:glare:

 

My little sister has had a horrible time getting a dx for her dd. However, it started when the child was an infant and missed *ALL* of her developmental milestones by huge margins. Her ped insisted that my niece was just developing at her own rate. That's all well and good, but my sis was very young and was lulled into a false sense of confidence that everything be would be fine. Now her dd is 11 and really, really struggling. I really feel that if her first ped had been on the ball this sweet girl could have had some early intervention amd her life would be different. I also think my sis would have had more of a sense of urgency in seeking answers to problems that are obvious to everyone around her.

 

She's recently been through more testing but there still aren't solid answers or plans.