Should I seek a second opinion?

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sagerchatter
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26 Sep 2016, 6:29 pm

sarag1989 wrote:
One of the things that was suggested to me by the psychologists was to place him in daycare/preschool as a way to "test" that the evidence that I'm giving them is actually happening across the board. This is where I get seriously wary...I have a child who has made it clear across the board through countless interactions with other toddlers (cousins, the park, the library, our attempt at watching a little girl, mall and doctor play areas, etc.) that something does not work for him regarding other small children. He is not yet old enough to articulate why he behaves the way he does around them. As a parent, is it ethical, then, for me to place him in a situation where I can reasonably assume he will "fail", just for observational purposes?


I felt the same way you did when my son was this age! Do you have a community center in your city or county that offers "parent/child" classes? I started a movement/play class with my son when he was 18 mos old. At 3, they "age out" to what they called an "On My Own" class, where the class was shorter (30 mins) and the parents could either sit outside the door or sit along the side of the room, as long as they didn't interact too much. This worked pretty well even for my socially anxious son, until a little girl started going that screamed hysterically the entire class, for a couple weeks in a row. Even after her mother (finally) took her out of the class, my son couldn't keep it together for the classes. ASD/Asperger's wasn't on our radar, so we chalked it up to a phase. I was also in my first trimester with my daughter, so I had little brainpower to investigate his behavior. But in your situation, you could do something like this to gauge his interaction.


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DW_a_mom
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26 Sep 2016, 6:44 pm

The thread is long so I am going to confess up front that I've cheated and only skimmed.

Some key points, some of which have been mentioned but that I think bear emphasis:
1. It is very difficult to diagnose ASD accurately at your son's young age unless the issues are severe.
2. Your son is developing well enough to not have any strong need for intervention.
3. There is absolutely nothing stopping you from learning the protocols recommended for ASD children with the types of issues you believe you are seeing, and applying those protocols.

The biggest danger in failing to diagnose a "high functioning" child at your son's age is likely to be in the area of inappropriate discipline. So, learn the protocols members here have found to work better for ASD children and see how they work for you. If they improve behavior and outcomes, you are on the right track.

The official diagnostic guide has eliminated Aspergers as a diagnosis; it is simply all Autistic Spectrum Disorder now. It may be a little trickier for so-called high functioning children to fall into the new category, which could become an issue if your child starts public school and needs interventions and accommodations. I find that unfortunate. But for now, home with you? You don't need the label to do what is best for your unique child.

My son, now 19, was given a tentative Aspergers diagnosis by the school when he was 7. We choose not to pursue the medical diagnosis as the school one allowed him to receive the accommodations and services he needed, but there has been no doubt in my mind that the school called it perfectly. I rebelled when they first suggested it, but a little research let me see just how appropriate it was. A HUGE piece of that diagnosis was the scatter on his IQ test, and that is not testing one can accurately perform on a 28 month old.

I do and do not wish I had known in the toddler years. On the one hand, there are definitely some situations I would have handled differently. I can see so clearly looking back how I messed up and created impossible situations for him; it obviously would have been lovely to avoid those tears, frustration and stress. On the other hand, without a label I was forced to follow our doctors very good advice. At the time, I was wondering if my son might have a sensory processing disorder, which our doctor felt was a trendy and unnecessary label. Still, his advice was sound: instead of worrying about labels, pay attention to your child. If you are watching and understanding your child, you will also, for the most part, figure out what makes him tick and what his needs are. As a result, my son and I rarely had issues when we spent time alone together. Preschool and public outings with other family members (including my husband) throwing in opinions and changing the situation were another matter.

So. I would wait a few years, and THEN pursue a second opinion. For now, since you believe ASD is likely, I suggest trying it on. Parent him on the assumption he is ASD and see if that makes things go smoother. Provide routines and predictability. Provide more clear explanations and details on what is ahead. Give long warnings before asking him to change what he is engaged in (I used to give 5 minute, 3minute, 1 minute warnings and then sing ABC followed by a count to 10). Avoid overly stimulating situations. If he seems to be attracted to overly stimulating situations (my son was), approach them carefully and provide regular quiet breaks. NEVER change your mind or create a delay after telling your son something positive is about to happen. See if you can notice tell tale signs of overload so that you can enter into mitigating routines before meltdowns occur. And so on.

As for trying on play groups or preschool, note that your son WILL have to learn to get along with peers at some point in his life. But there is no reason you can't choose carefully and ease him in. Follow your instincts making those selections; I have always felt that I had my son in the wrong preschool and I will always regret that choice. I misunderstood something I was told during tours and should have pulled him out the minute I realized the miscommunication, since that one policy proved to be highly problematic for him. It was just so hard at the time because I felt I was going at 100 mph and all the other preschool options had year long wait lists. I did eventually loosen up my own obligations so that I could adjust on the run better, but that was something I still had to learn back then.

I will share that at 19 my son is considered a success story, eventually leaving behind his IEP (which I had mixed feelings about, but officially that is considered success) and moving onto a well respected University, where he is a computer science major and top student. It may surprise you to hear that in his summer jobs, he works with children. He loves working with children, despite not really caring for people as a whole all that much. He understands the unique ones and gets a lot of satisfaction from being a mentor, and he has a captive (but surprisingly interested) audience for sharing the vast amounts of information he has in his head. He is a good teacher, already hired as a tutor at his school, and is toying with that as an option for his career, although game design is his first love and obsession. I don't know if he could be diagnosed under the revised criteria; we read them together and think it would have been a close call. But the interventions he received were ESSENTIAL to his finding his way. Before we had the label the gap between what he seemed to be able to do, and what he actually was doing, was large and growing. After, the school had a reason to sit down and learn how to handle his needs. Still, if he hadn't had a severe dysgraphia co-morbid, I don't know if the school would have been willing to look, and everything would have been much, much more difficult.

Anyway. I wish you luck on your journey. If your son is ASD, there will be some very rough years ahead. But as long as you are paying attention and doing your best to understand him, he will also amaze you and make you proud.


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Last edited by DW_a_mom on 26 Sep 2016, 6:59 pm, edited 2 times in total.

sagerchatter
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26 Sep 2016, 6:52 pm

sarag1989 wrote:
The thing that confuses me, though, is that it's not an angry aggression. It's an obsessive, reactionary, knee-jerk aggression. He always has a straight face and doesn't seem to do it ever out of a desire to harm, but rather to defend his own self. Or a sensory, always needing to touch others thing. Any ideas about that?


I already spoke to this in my first reply (more like volume :lol: ), but I really feel it's important to affirm what you're saying. I can tell you from my experience that when my son gets aggressive, it is clearly with great agony. He "winds up" his arms, ready to smack us but he practically shakes with resistance. He knows he shouldn't hit, but he doesn't know what else to do. When we talked with him about what it means when he says he wants to kill someone, he made progress by adding "and I'm not supposed to say that because it's not a nice thing to say" after saying he'd kill his sister for her crying. That's actually the only time and situation he says he'll kill someone and I can say for a fact that another kid crying (it has to be big crying, thankfully, not just whining) is the most overwhelming circumstance for him. So even though it takes my breath away when he says it, I know that he's using it in a situation that's the worst for him. And hey, he's gotten better still. Now he just says he'll do something terrible. I guess he's listening!

And then there's the sensory component, and I think that's a two-fold thing for us: 1) he is seeking sensory input. I wish we had space to put a huge foam block pit or a giant mattress he can flop himself onto, to body-crash. I'm that way too! It feels good to hurl myself into the mattress at the end of a long day!! 2) I don't think he understands the amount of force he's using and how much force should be/should not be applied. For example, we've had to teach him how to hug his sister. He either doesn't put his arms out and just wiggles around, or he slams up against her, knocking her off balance. We have take his arms and her arms and like position them as if they were dolls. It's quite cute, actually. And he's picking up on it.

Again, I hope I'm not equating our experiences where it isn't fitting. Feel free to discard whatever doesn't fit! :lol:


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sagerchatter
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26 Sep 2016, 7:04 pm

DW_a_mom - your reply is excellent. I was thinking the same thing about the complexity of testing a HF toddler. I think it was difficult to test my then-5 year old, b/c he couldn't/wouldn't comply for most of it. He had the same scatter of points you describe. I actually feel better, after reading your post, that we didn't "see" the problem when he was a toddler/preschooler. And I think our instincts were right to not double down on traditional discipline theories. I do wish we would've stumbled upon something appropriate before now, but at least we got here. I think your advice to parent as you suspect is necessary until a diagnosis is appropriate is so great.

Again, what you said about the appropriateness of discipline is spot on. You have to find the best way to apply limits that doesn't activate him. We haven't figure what will work long term for him yet, but I feel inspired by DW's reply that my instincts are correct. :heart:


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26 Sep 2016, 7:09 pm

sagerchatter wrote:
sarag1989 wrote:
The thing that confuses me, though, is that it's not an angry aggression. It's an obsessive, reactionary, knee-jerk aggression. He always has a straight face and doesn't seem to do it ever out of a desire to harm, but rather to defend his own self. Or a sensory, always needing to touch others thing. Any ideas about that?


I already spoke to this in my first reply (more like volume :lol: ), but I really feel it's important to affirm what you're saying. I can tell you from my experience that when my son gets aggressive, it is clearly with great agony. He "winds up" his arms, ready to smack us but he practically shakes with resistance. He knows he shouldn't hit, but he doesn't know what else to do. When we talked with him about what it means when he says he wants to kill someone, he made progress by adding "and I'm not supposed to say that because it's not a nice thing to say" after saying he'd kill his sister for her crying. That's actually the only time and situation he says he'll kill someone and I can say for a fact that another kid crying (it has to be big crying, thankfully, not just whining) is the most overwhelming circumstance for him. So even though it takes my breath away when he says it, I know that he's using it in a situation that's the worst for him. And hey, he's gotten better still. Now he just says he'll do something terrible. I guess he's listening!

And then there's the sensory component, and I think that's a two-fold thing for us: 1) he is seeking sensory input. I wish we had space to put a huge foam block pit or a giant mattress he can flop himself onto, to body-crash. I'm that way too! It feels good to hurl myself into the mattress at the end of a long day!! 2) I don't think he understands the amount of force he's using and how much force should be/should not be applied. For example, we've had to teach him how to hug his sister. He either doesn't put his arms out and just wiggles around, or he slams up against her, knocking her off balance. We have take his arms and her arms and like position them as if they were dolls. It's quite cute, actually. And he's picking up on it.

Again, I hope I'm not equating our experiences where it isn't fitting. Feel free to discard whatever doesn't fit! :lol:


These (both posts) sound like overload. There are many kinds. Point being, everything at that point is so jumbled in the child's head that they no longer are in control of their own actions. They do not want to be in that mental space. It is the same build up you have for melt-downs, just a different way of exhibiting it.

My advice is to identify the patterns preceding the behavior. My son, for example, would start to appear more excited and engaged, but would also be increasing his efforts to gain control of the situation (giving out more directions, trying more and more to direct the actions of those around him, or might start actively trying to change the physical landscape literally moving objects, etc). His eyes also changed. To everyone else, he was playing and having fun, and the eventual outburst came out of nowhere. I learned better. Eventually I learned to redirect him out of a situation if I started to see those signs, so that he could regain control before acting out.


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26 Sep 2016, 7:21 pm

sagerchatter wrote:
DW_a_mom - your reply is excellent. I was thinking the same thing about the complexity of testing a HF toddler. I think it was difficult to test my then-5 year old, b/c he couldn't/wouldn't comply for most of it. He had the same scatter of points you describe. I actually feel better, after reading your post, that we didn't "see" the problem when he was a toddler/preschooler. And I think our instincts were right to not double down on traditional discipline theories. I do wish we would've stumbled upon something appropriate before now, but at least we got here. I think your advice to parent as you suspect is necessary until a diagnosis is appropriate is so great.

Again, what you said about the appropriateness of discipline is spot on. You have to find the best way to apply limits that doesn't activate him. We haven't figure what will work long term for him yet, but I feel inspired by DW's reply that my instincts are correct. :heart:


I am glad you are learning to trust those instincts. They will be very, very key to raising your unique child.

There is a ton of good advice buried on this board about what types of discipline will work. While ASD kids are "normal" in having a need to test and break boundaries, most seem to respond best to sheer logic. If they understand the reason for a rule, they will follow it. Don't be afraid to explain and explain again until they can absorb it. Still, that comprehension isn't going to happen right away, so very clear, "do A, and B will happen" is going to have to be your go-to in the short run. Just be wary of how difficult it is for your child to understand that situation A.1 is still A, and go a little gently with that process.

One of the most effective tools I used was the simple, "we will have to leave if you cannot follow the rules I've set out." AND I repeated them every. single. time we entered the situation. I happened to have a sensory seeker, so being out and about was nirvana for him when he was young. He didn't want to have to leave. Sadly, he eventually realized he had a limit on how much he could process and became more introverted, a level of self-insight he needed to achieve and that I really respect, but its weird to reconcile that eager toddler I just wrote about with the more reserved adult I now know.


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sagerchatter
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26 Sep 2016, 7:29 pm

DW_a_mom wrote:
My advice is to identify the patterns preceding the behavior. My son, for example, would start to appear more excited and engaged, but would also be increasing his efforts to gain control of the situation (giving out more directions, trying more and more to direct the actions of those around him, or might start actively trying to change the physical landscape literally moving objects, etc). His eyes also changed. To everyone else, he was playing and having fun, and the eventual outburst came out of nowhere. I learned better. Eventually I learned to redirect him out of a situation if I started to see those signs, so that he could regain control before acting out.


I can totally picture what you're describing. I'm going to start paying closer attention!


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sagerchatter
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26 Sep 2016, 7:48 pm

Your comment about his shift to introversion made me think of something I just read about the "observer perspective" that parents must provide for their children until they are old enough to be their own observer. The book is written by a psychologist who specializes in Asperger's/HF ASD, ADHD, OCD, bi-polar disorder and Tourette's. It's called Genius: Nurturing the Spirit of the Wild, Odd and Oppositional Child. He defines the "observer perspective" as the ability for him/her to see themselves in the context of his situation, to own his part in the problem and understand how others fit into the picture. From what you describe about your son, I'd say you did a fine job helping him learn that observer perspective!


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sarag1989
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27 Sep 2016, 9:12 am

So many replies this morning! You all are amazing! It will take me some time, but I'll work through them and get back to you all! Thank you so very, very much!! !!



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27 Sep 2016, 9:47 am

sagerchatter wrote:
I hope I didn't make this post seem like I was trying to make it about my son, and not yours. That's my way of saying "I totally understand what you're saying", but in about 500 more words than necessary. (Okay, maybe more like 1000. I have ADHD, and my editing skills suck!) anyhow, I have found so much relief from reading about other kids that are just like my son. It strengthen my resolve to support him however we need to.


No, seriously, thank you. It made me feel so good to come home from errands last night and read this post. Re-reading it this morning, my son was alternately chattering the same three sentences over and over (and over and over) again in his little odd (but endearing) voice about needing to eat gum ("I NEED gum, Mama. I want to eat GUM! I WANT my gum, Mama.") (he has been very jealous of late of our gum chewing and knows he won't be having any until he is older) and licking my house slippers. So, re-reading your post helped even in that moment. Hearing that other people's children have other similar behaviors as my own child's helps to be able to look at the situation more from the outside and see a lighter side of life. Because, honestly, just as you were able to see the humor in my descriptions, I can see it in yours, despite the fact that in the moment we both have probably been so frustrated and confused by those same behaviors at times! Actually, I wanted to thank you for being brave enough to tell me that you chuckled at the descriptions I had written of him. I could keep saying this so many different ways, but for someone who is seasoned in this stuff to read it and react that way feels so much better than the opposite that I get almost daily in life (and sometimes it is me reacting this way): reactions first of shock, and then wanting to make an excuse ("He's just spoiled"), and then getting annoyed when the behavior isn't going away, and then retreating and distancing emotionally. I watch it happen with acquaintances and family members and it is painful, but even more painful when I realize that I've done it to him myself. I can promise you, I will remember your post in my times of frustration and your reaction alone will help me to respond appropriately and with a lighter heart :heart:



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27 Sep 2016, 10:00 am

sagerchatter wrote:
I can't tell you how many times in his short little life that my husband and I have utter the phrase "THAT'S why he's been doing that!" I'm stuck for examples at the moment, but basically almost every one of his frustrating behavior or responses that we were just positive was defiant rebellion and disrespect (ok, that's mostly me - my husband is less emotional than that) has had some "reasonable" explanation.


These are the best days. Making a realization like that literally makes my day. We are having them now, though they are still few-and-far-between because of his age. But, just like the church example I gave a few days ago, he is able here and there now to communicate something that produces an "Aha!" moment for us. We just had one the other day that I sincerely wish I would have written down because I forgot it, but it was important because it connected to something that I did when he was an infant, as well, and if I had known how it made him feel, I wouldn't have. It was a sensory thing. I have tried to remember it for days and it hasn't come back. Anyway, in that moment, we both felt great. I was able to say to him, "Okay, I hear you and that makes sense. I'm sorry for the times I've done that in the past." And he heard that and I could tell how validated he felt. Even if it really doesn't make sense to me personally for how I experience things, when I know how something makes him feel I can take it at face value and just believe him. I am really looking forward to him being able to express himself more and more, because I'll be able to be such a better parent for him then, when he can tell me to some extent how things make him feel and I can adapt accordingly. It's such a shame to remember what a perpetually unhappy infant he was, and how in the next years I'll probably realize all these things I did that I didn't know were causing him pain and stress, that any other person does for/with/around their kids as well. Like make them wear hats, or the wrong kinds of fabric, or singing too much, or having music too loud, etc. Poor man, coming into the world and being so uncomfortable all the time!



sarag1989
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27 Sep 2016, 10:28 am

sagerchatter wrote:
sarag1989 wrote:
Do you have a community center in your city or county that offers "parent/child" classes?


Before we started suspecting Asperger's, last year at about this time we enrolled him in a parent/child Kindermusik class. He loved to dance at the time. Boy, did Kindermusik change that. It was a once a week class, and there were all 6m-newly 2-year-olds there with him. This was actually the beginning of my suspecting that something was wrong. He was 15 months old when he started. He was talking already. I would have expected him to find the whole place very pleasant, with the cute music and soft playthings and other tiny kids. But when we were there, he was silent. He demanded to lay on my shoulder for all 45 minutes. He wasn't smacking at other kids yet, but would shriek when they would come near him. And these were little babies just learning to crawl and walk for the most part. He never danced, ever. He wanted me to carry him around the whole time. Unlike the other babies, when we did dances where the parents had to move their kids' arms and legs or lift them into the air, he would tense up and yell at me and hit me. He did not want to be moved in any way. After a month of this, I began asking the Kindermusik teacher if she thought something was wrong. She assured me that she thought he would grow into it. She said she would try some things to make him more comfortable. She started including balls in the routine; this did help a lot in terms of happiness, but he still wanted to be in a corner kicking the balls alone once they were included. She also said she would try to find bilingual music to play before class started. This helped before class started, but not once class was in session. However, despite her efforts and a year's worth of practice, he never improved, and actually started to get more aggressive (in that reactionary, deadpan, knee-jerk way when kids walked past) as the year went on and to make it harder and harder to get there in the first place. And so, the isolation began. We had to start sitting away from other kids, and back then I was always embarrassed that he was so upset always upon arriving. It finished up in May. I considered quitting all the time, but we had paid for it and I was hopeful back then that with more "socialization" he would get more comfortable, and my family was really pushing for "socialization" at that time as well. Instead of "socializing" him, though, it actually made him less sociable and more anxious and stressed, even at home. I do pinpoint this time period to when he started to have fits about leaving the house at all, ever. I don't know if at that age he was worried he would be going to Kindermusik at any point, or what. Or it could have been coincidental because now he mostly hates going into public, anyway. I will never know.

So, I get worried. I don't know what the right thing to do is. Last month, we got new townhome neighbors who have a 24-month-old girl who, other than her outie belly button and the fact that she is often not wearing clothing (exposing him to all the parts he prefers to bite), she is a quiet, independent sort of kid and that seems to work for him. They leave each other alone and seem happiest to smile and giggle walking past each other, and then go back to their own work. I don't know if this is a step in the right direction or keeping him in a situation that won't help him to grow. I really like the idea of a group of parents with kids "like him", but I don't know if that would work for him yet at this age or if it would be more for me to have the luxury of being around forgiving people who understand. I have stopped hearing from pretty much all of my mom acquaintances in the past months, and it's hard not to assume that it's because of my child's behavior and my own (probably) obvious nervousness about everyone's reactions and judgments, as well.



sarag1989
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27 Sep 2016, 11:30 am

DW_a_mom wrote:
I will share that at 19 my son is considered a success story, eventually leaving behind his IEP (which I had mixed feelings about, but officially that is considered success) and moving onto a well respected University, where he is a computer science major and top student. It may surprise you to hear that in his summer jobs, he works with children. He loves working with children, despite not really caring for people as a whole all that much. He understands the unique ones and gets a lot of satisfaction from being a mentor, and he has a captive (but surprisingly interested) audience for sharing the vast amounts of information he has in his head. He is a good teacher, already hired as a tutor at his school, and is toying with that as an option for his career, although game design is his first love and obsession. I don't know if he could be diagnosed under the revised criteria; we read them together and think it would have been a close call. But the interventions he received were ESSENTIAL to his finding his way. Before we had the label the gap between what he seemed to be able to do, and what he actually was doing, was large and growing. After, the school had a reason to sit down and learn how to handle his needs. Still, if he hadn't had a severe dysgraphia co-morbid, I don't know if the school would have been willing to look, and everything would have been much, much more difficult.


This is lovely. It is interesting to hear about Asperger's being removed/blended in. I am wondering now if that's a critical piece of information that I didn't understand and that is contributing to things with the psychologist being so difficult at the moment. You son's success story is touching and hopeful. It is everything that I want for my own child. And it was interesting to read your beginning comments about the "facts" of his situation because, again, I think it helps me to understand the position of the psychologist better. Here is where I'm at, and I'm going to be 100% honest. I'll be looking for your opinion, if you check back at this and have the time today or tomorrow to respond. Also, please, please don't hear this as me questioning you or judging you or being frustrated with what you've told me. If I have a tone of urgency, it's a reflection of things going on in our life right now regarding this issue.

I already have started reading books and instruction manuals on kids with Asperger's and implementing more and more strategies at home. They are working; it has been wonderful. I read these books and it is like I have been bestowed "the light of reason"- they just make sense for my kid. I do think that the more I keep reading, the better things are going to get, and I do think he is going to be really successful. And as someone that plans on homeschooling anyway (with the support of the local homeschool community; he isn't going to be perpetually home alone or only with his future siblings), and has found that the homeschooling community is rife with kids who are "different", I don't anticipate having the same avalanche of unique problems that beginning "the school-age years" can pose- the rhythmn of our home life will continue on as ever, and I'll be able to tailor his outings to his needs. However, I have a few worries, and perhaps admittedly they are more about me than about him, but hopefully as a parent they are relatable and perhaps even true of the parenting life: 1) I worry it is "unethical" to essentially be self-treating him for a condition he hasn't been diagnosed with. Well, maybe less "unethical" than "questionable" or "criticizable". There is small voice in my head that tells me, "So what if what you're learning makes sense to YOU and the strategies you're implementing WORK for him? If a doctor doesn't believe you, the doctor is probably right." 2) You mention that if he does have it, there are hard years ahead. So far, for the most part, yes, things are more or less okay. What do I do if in future things change, I realize there are deeper issues there that are beyond my assistance, and he doesn't have a diagnosis already in place? How long would it take him to get the help he may need? 3) The validation will help my relationships, and hopefully his relationships, too. It is incredibly awkward to be put in a situation where I feel compelled to tell acquaintances, "We think he has Asperger's" to explain the behaviors they are seeing. I have literally had family members tell me I only think that to make myself feel better about the way he is "turning out" and that that isn't fair to him. If a family member thinks that, what do people who aren't related to me, and likely as judgmental, think? On the flip side, if he did have a formal diagnosis, I can pull people aside just one time and say, "Hey, just so you know, he has ________, and so if he is doing anything that upsets you or your child, just let me know and I'll handle it. He doesn't mean to hurt your child." That comes off as authoritative and demands respect for both of us, as compared to the other which I feel sounds apologetic and desperate for acceptance. Other parents are notorious for labeling parents and children as "bad", and it closes off relationships. I cannot express to you, but I'm sure you've witnessed it yourself in life and on social media, the degree to which mothers are constantly judging and comparing other mothers. I think when we see this online all the time, it shapes how we think in our heads, too. I have heard women in my own life do this against mothers we are acquaintances with, and in front of children. My kid is aware of people's perceptions of him, though I don't think he "understands" or processes it well. It certainly makes him more agitated and more likely to act out rather than encourages him to act like other people. These are the types of ineractions and judgments I'd like for both of us to be able to avoid. As I said in a previous post, we don't hear from really anyone anymore. 4) Unfortunately a good deal of my family, other than luckily my own parents, is convinced that he is the way he is because he is home alone with me, that I am too easy on him, and that he doesn't have any siblings to force him to "learn" how to be nice to people (which is particularly appalling to hear from them given that he had a little brother that only lived 2.5 days, so it's definitely not like I am doing this to him "on purpose"). My in-laws are the type of people who believe that grandparents, by virtue of being grandparents, do what they want. And boy, do they follow through with that. Their most recent response to my son was, "Give him to us for two weeks and we'll have him "fixed". Nothing two weeks on the farm can't fix." Their idea of "fixing" him is forcing him into situations that make him uncomfortable on a regular basis until he "just gets used to it". I have seen the opposite in my child, such as with Kindermusik. It's hard for me to not feel like if he had a diagnosis, I could tell them that it is imperative that they follow the directions I give them for his health and well being, or he simply cannot see them anymore. Under any other circumstance, including life right now, they do not believe me and it would cause huge family problems if I were to not allow him to see them anymore for what they consider to be 'no good reason". Everyone knows right now that there is a reason he hasn't really seen most of them in a while, especially without my supervision. I honestly dream of a situation where people in my family believe me and are capable of learning how to interact with him in a healthy way, how to set up time with him in places that don't trigger him, and are willing to learn to see things from his perspective. Instead, right now, they are horrified by his reactionary behaviors, tell him how ashamed they are of him, insist to me in front of him that he just needs to be spanked, and have insinuated in front of him that raising him should be no different than training their new puppy. These are people who don't change their ways unless life absolutely forces them to.

So, I realize that people can say, "You're his parent, it's your responsibility to stand up for him and protect him no matter what, whether he has a diagnosis or not." The thing is, I do. But if I believe he has Asperger's, the books I read further make me feel that way, and the strategies are working, isn't that all the more reason to say he probably does have it, rather than say, "he is successful for the most part, so he probably doesn't have it"? I picture myself saying, and wonder if you would also say, "Well, he's successful because I am terribly dedicated to that outcome- using strategies for people WITH ASPERGER'S." Honestly, I cannot currently see a way that having the actual doctor's diagnosis will do anything other than make his quality of life better, concerning everyone involved.

Again, please don't read this as confrontational. It has nothing to do with you, and everything to do with our life right now. I am so glad that you responded to us. I am only addressing these specific questions to you because you sound like someone who knows her stuff, who has been around this particular block, and has used all of that to her child's great advantage.



sarag1989
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27 Sep 2016, 11:37 am

DW_a_mom wrote:
My son, for example, would start to appear more excited and engaged, but would also be increasing his efforts to gain control of the situation (giving out more directions, trying more and more to direct the actions of those around him, or might start actively trying to change the physical landscape literally moving objects, etc). His eyes also changed. To everyone else, he was playing and having fun, and the eventual outburst came out of nowhere. I learned better. Eventually I learned to redirect him out of a situation if I started to see those signs, so that he could regain control before acting out.


Wow. Thanks so much for describing this. While my son tends to react mostly physically to other kids, it is definitely in this light, and this provides a lot of perspective for me. When we were watching the other two-year-old, until it became clear that it wasn't going to work for him, it was like all the following her around and "physically assaulting" her in his non-angry, obsessive way, was his attempt to control the situation, even though he didn't seem outwardly upset. Hearing what you're saying about the "increasing" nature of your son's behaviors, his eyes changing, and then the eventual outburst, sounds so familiar, just with different preferred ways of expressing that. He would follow her around and touch her until he would eventually just lose it. He never actually once played with her or "settled" into a comfort zone.



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27 Sep 2016, 5:22 pm

You ask a lot of really good questions below. Ones that we've all pretty much had to grapple with. My decisions were based on my unique facts and circumstances; I share them only so that you can widen your data base of options and outcomes. What you choose will ultimately have to come from your own instincts about your unique situation. It will ALWAYS be that way for you and your son; there may be protocols and recommendations, but there are no absolutes when it comes to raising a child, especially an ASD one. Never apologize for asking questions and seeking what you need to make the most informed choices possible, and never apologize for doing what you've decided is right.

I will do my best to address some of the points, below, and then I will have to disappear back in the woodwork. I'm afraid I have a work deadline looming.

sarag1989 wrote:
DW_a_mom wrote:
I will share that at 19 my son is considered a success story, eventually leaving behind his IEP (which I had mixed feelings about, but officially that is considered success) and moving onto a well respected University, where he is a computer science major and top student. It may surprise you to hear that in his summer jobs, he works with children. He loves working with children, despite not really caring for people as a whole all that much. He understands the unique ones and gets a lot of satisfaction from being a mentor, and he has a captive (but surprisingly interested) audience for sharing the vast amounts of information he has in his head. He is a good teacher, already hired as a tutor at his school, and is toying with that as an option for his career, although game design is his first love and obsession. I don't know if he could be diagnosed under the revised criteria; we read them together and think it would have been a close call. But the interventions he received were ESSENTIAL to his finding his way. Before we had the label the gap between what he seemed to be able to do, and what he actually was doing, was large and growing. After, the school had a reason to sit down and learn how to handle his needs. Still, if he hadn't had a severe dysgraphia co-morbid, I don't know if the school would have been willing to look, and everything would have been much, much more difficult.


This is lovely. It is interesting to hear about Asperger's being removed/blended in. I am wondering now if that's a critical piece of information that I didn't understand and that is contributing to things with the psychologist being so difficult at the moment. You son's success story is touching and hopeful. It is everything that I want for my own child. And it was interesting to read your beginning comments about the "facts" of his situation because, again, I think it helps me to understand the position of the psychologist better. Here is where I'm at, and I'm going to be 100% honest. I'll be looking for your opinion, if you check back at this and have the time today or tomorrow to respond. Also, please, please don't hear this as me questioning you or judging you or being frustrated with what you've told me. If I have a tone of urgency, it's a reflection of things going on in our life right now regarding this issue.

I already have started reading books and instruction manuals on kids with Asperger's and implementing more and more strategies at home. They are working; it has been wonderful. I read these books and it is like I have been bestowed "the light of reason"- they just make sense for my kid. I do think that the more I keep reading, the better things are going to get, and I do think he is going to be really successful.


When I first got a school-use diagnosis for my son, the psychologist told me that from his observations the best way to insure a positive outcome for my child would be to read, read, and read some more. Boards like this one became my favorite way to do that. You are on the right track.

Quote:
And as someone that plans on homeschooling anyway (with the support of the local homeschool community; he isn't going to be perpetually home alone or only with his future siblings), and has found that the homeschooling community is rife with kids who are "different", I don't anticipate having the same avalanche of unique problems that beginning "the school-age years" can pose- the rhythmn of our home life will continue on as ever, and I'll be able to tailor his outings to his needs. However, I have a few worries, and perhaps admittedly they are more about me than about him, but hopefully as a parent they are relatable and perhaps even true of the parenting life: 1) I worry it is "unethical" to essentially be self-treating him for a condition he hasn't been diagnosed with. Well, maybe less "unethical" than "questionable" or "criticizable". There is small voice in my head that tells me, "So what if what you're learning makes sense to YOU and the strategies you're implementing WORK for him? If a doctor doesn't believe you, the doctor is probably right."


The label is far less important than the result. Not to mention, while the doctors may be the professionals knowing the labels the best, YOU are the professional knowing your CHILD best. After spending so many years on this board, I would say that the medical profession overall has been hit and miss with accurate diagnosis, although it certainly keeps getting better. Read around the rest of this forum and you will realize that as adults ASD individuals have a distinct way of thinking; if your son is not ASD, that will become more apparent to you over the years, as well.

My second child is "normal" and, overall, it didn't hurt her that by then I had developed a lot of habits based on parenting an ASD child. The main issue was that she became good at taking advantage of me. In fact, she has the social skill talent to play all of us. Once we realized that and started calling her on it, it ended.

Quote:
2) You mention that if he does have it, there are hard years ahead. So far, for the most part, yes, things are more or less okay. What do I do if in future things change, I realize there are deeper issues there that are beyond my assistance, and he doesn't have a diagnosis already in place? How long would it take him to get the help he may need?


I do think you will eventually want a professional analysis. It's more that I think you have a few years you can wait, until the symptoms will show themselves more clearly. 5, 6 or 7 can be a good age, when diagnosis gets easier. Do have some 3rd party diagnosis (school, psychologist or medical) in hand before age 10 or so.

Quote:
3) The validation will help my relationships, and hopefully his relationships, too. It is incredibly awkward to be put in a situation where I feel compelled to tell acquaintances, "We think he has Asperger's" to explain the behaviors they are seeing. I have literally had family members tell me I only think that to make myself feel better about the way he is "turning out" and that that isn't fair to him. If a family member thinks that, what do people who aren't related to me, and likely as judgmental, think? On the flip side, if he did have a formal diagnosis, I can pull people aside just one time and say, "Hey, just so you know, he has ________, and so if he is doing anything that upsets you or your child, just let me know and I'll handle it. He doesn't mean to hurt your child." That comes off as authoritative and demands respect for both of us, as compared to the other which I feel sounds apologetic and desperate for acceptance. Other parents are notorious for labeling parents and children as "bad", and it closes off relationships. I cannot express to you, but I'm sure you've witnessed it yourself in life and on social media, the degree to which mothers are constantly judging and comparing other mothers. I think when we see this online all the time, it shapes how we think in our heads, too. I have heard women in my own life do this against mothers we are acquaintances with, and in front of children. My kid is aware of people's perceptions of him, though I don't think he "understands" or processes it well. It certainly makes him more agitated and more likely to act out rather than encourages him to act like other people. These are the types of ineractions and judgments I'd like for both of us to be able to avoid. As I said in a previous post, we don't hear from really anyone anymore.


If your son truly is ASD, this all is something you are going to have to let go of. You can NOT let yourself be influenced by the perceptions of others. One of the most important things parents do when raising ASD children is throw out the rule book and the expectations of others. That all gets in the way of doing the right thing for your child. It is really difficult emotionally for a parent, but necessary.

In my opinion, your son will need to know that you believe his "brain works differently" and that the difference comes with gifts and burdens, but that it remains important to be true to who you are. Its no different than being born with blond hair instead of brown hair; people are just made different. Hopefully he will be happy to own it, but don't be afraid to include him at some basic level in your evolving thought process. You are right, he is aware, and he needs help understanding what that means.

Unfortunately, a formal diagnosis won't shut up the naysayers. The people who believe it is a trendy label are incapable of seeing ASD in anything but the most extreme cases.

If you feel you have to explain, I think it would suffice to say "I believe he may be on the autistic spectrum is but too young and too lightly affected to get an accurate diagnosis at this age. I am working with a variety of resources to figure it out and I appreciate your patience with us. I just want to do what is right for him and for us."

Quote:
4) Unfortunately a good deal of my family, other than luckily my own parents, is convinced that he is the way he is because he is home alone with me, that I am too easy on him, and that he doesn't have any siblings to force him to "learn" how to be nice to people (which is particularly appalling to hear from them given that he had a little brother that only lived 2.5 days, so it's definitely not like I am doing this to him "on purpose"). My in-laws are the type of people who believe that grandparents, by virtue of being grandparents, do what they want. And boy, do they follow through with that. Their most recent response to my son was, "Give him to us for two weeks and we'll have him "fixed". Nothing two weeks on the farm can't fix." Their idea of "fixing" him is forcing him into situations that make him uncomfortable on a regular basis until he "just gets used to it". I have seen the opposite in my child, such as with Kindermusik. It's hard for me to not feel like if he had a diagnosis, I could tell them that it is imperative that they follow the directions I give them for his health and well being, or he simply cannot see them anymore. Under any other circumstance, including life right now, they do not believe me and it would cause huge family problems if I were to not allow him to see them anymore for what they consider to be 'no good reason". Everyone knows right now that there is a reason he hasn't really seen most of them in a while, especially without my supervision. I honestly dream of a situation where people in my family believe me and are capable of learning how to interact with him in a healthy way, how to set up time with him in places that don't trigger him, and are willing to learn to see things from his perspective. Instead, right now, they are horrified by his reactionary behaviors, tell him how ashamed they are of him, insist to me in front of him that he just needs to be spanked, and have insinuated in front of him that raising him should be no different than training their new puppy. These are people who don't change their ways unless life absolutely forces them to.


My family was tactful about it, but they were the same way. Until one day we were all out together and they witnessed all the steps that led my son to a meltdown start to finish, thought they could get him out of it, and found they were 100% wrong. Your family may or may not ever have that opportunity. All you can do is tell them, "I hear and appreciate your opinions, and I do consider them strongly, but ultimately I have to figure this out for myself. I spend more time with him and know him better than you do, and I hope you will trust me."

Quote:
So, I realize that people can say, "You're his parent, it's your responsibility to stand up for him and protect him no matter what, whether he has a diagnosis or not." The thing is, I do. But if I believe he has Asperger's, the books I read further make me feel that way, and the strategies are working, isn't that all the more reason to say he probably does have it, rather than say, "he is successful for the most part, so he probably doesn't have it"? I picture myself saying, and wonder if you would also say, "Well, he's successful because I am terribly dedicated to that outcome- using strategies for people WITH ASPERGER'S." Honestly, I cannot currently see a way that having the actual doctor's diagnosis will do anything other than make his quality of life better, concerning everyone involved.

Again, please don't read this as confrontational. It has nothing to do with you, and everything to do with our life right now. I am so glad that you responded to us. I am only addressing these specific questions to you because you sound like someone who knows her stuff, who has been around this particular block, and has used all of that to her child's great advantage.


I suspect your are probably right, but at this age I feel you can prioritize letting him be who he is without all the "changing" that is naturally going to follow attaching a label. That doesn't mean you stop reading and applying strategies that might be helpful; it just means you hold yourself back from the sense there is an urgent problem to be fixed. Let him enjoy lining things up straight if that is what he is into. Let him have quiet days alone with you if that is what makes him happy. The world is going to crash in on him with expectations and demands soon enough; these years to be who he is without having to conform are preciously short. As noted earlier, I do think you will eventually want a diagnosis, and if he is ASD it will be much more clear in a few years than it is now. That will also be when he will have a greater need to start overcoming some of his social hurdles, and have to face more expectations to conform. Once he is 6 or 7, children his age will make developmental leaps that he won't, and he will have to confront what some of his challenges are going to mean to the rest of his life. It's all going to hit eventually, and I'm not suggesting you run and hide, just ... let him have these few years, while making plans to get that second opinion and a formal diagnosis at 5-6-7.

I do feel I spent too much time in my son's preschool years worrying and not enough enjoying. While we didn't know he was ASD, we did have a sense "something" was up. That is why I try to get parents to hold off the intensity just a little longer, if I believe their child's issues can handle it. I know early intervention is practically magic in many cases, but your son isn't showing the issues early intervention is designed to address. The time you will need to work the most intensely with him most likely lies ahead, multiple years off. What he needs the most right now is to thrive as his unique self. JHMO.

My son is a success story, but he has also been molded by society. The purity of who he once was is, by necessity, gone. There is a loss there that, while necessary, does make me sad. Hence, my opinion that when you have time to wait, you should wait.


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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


DW_a_mom
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27 Sep 2016, 5:40 pm

sarag1989 wrote:
DW_a_mom wrote:
My son, for example, would start to appear more excited and engaged, but would also be increasing his efforts to gain control of the situation (giving out more directions, trying more and more to direct the actions of those around him, or might start actively trying to change the physical landscape literally moving objects, etc). His eyes also changed. To everyone else, he was playing and having fun, and the eventual outburst came out of nowhere. I learned better. Eventually I learned to redirect him out of a situation if I started to see those signs, so that he could regain control before acting out.


Wow. Thanks so much for describing this. While my son tends to react mostly physically to other kids, it is definitely in this light, and this provides a lot of perspective for me. When we were watching the other two-year-old, until it became clear that it wasn't going to work for him, it was like all the following her around and "physically assaulting" her in his non-angry, obsessive way, was his attempt to control the situation, even though he didn't seem outwardly upset. Hearing what you're saying about the "increasing" nature of your son's behaviors, his eyes changing, and then the eventual outburst, sounds so familiar, just with different preferred ways of expressing that. He would follow her around and touch her until he would eventually just lose it. He never actually once played with her or "settled" into a comfort zone.


I am glad you found it helpful :)

It gets harder for me to describe as those years get more distant, but I'm glad I could still do it in a way that made sense to someone.

Obviously, at 19, my son is in charge of monitoring it all in himself. That is the goal, to eventually transfer responsibility for recognizing the patterns and mitigating the situation to the child.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).