Asperger's? long post, sorry

Mrs. Bradbury

It will ALWAYS be the PeopleMover!
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May 11, 2009
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I am posting here hoping that you guys will have some words of wisdom for me. I have suspected for years that something was different about my youngest (12 year old) son, but I also have just figured he was being himself so I went along with his quirks as best I could. But as he is getting older it’s occurred to me that clearly, I am going to need different strategies with parenting him than I used with my older two.

Backstory - my 2 older children are from a previous marriage. Both are bipolar (recently diagnosed, doing great on meds) and all 3 kids have ADD. My pregnancies with all 3 were completely normal, full term. No developmental delays in any of them. I am divorced from his father and remarried to my soul mate. We have a very happy home.

So, I have written a list of things about my youngest that, if taken separately, you could probably pass off as no big deal, but taken together, to me it makes me suspect Asperger’s. For example:

1. His gait - he walks kind of clumsily, on the outsides of his feet, and is pigeon-toed. He has been to his regular doctor and two different specialists who all said that absolutely nothing was physically wrong - they even did xrays of his hips, legs, feet. He rarely runs and is sedentary by nature and always has been.
2. Preferences for clothing - he has always preferred soft cotton clothing with no extras like collars. Only his love for my husband (his stepdad) will get him into a polo shirt - he wants to dress like him when he “dresses up”.
3. Not wanting to tie shoes - he would still be wearing Velcro shoes if I allowed him, but children can be so cruel I just won’t buy them. We had to force him to learn to tie his shoes at a much later age than normal. With my other two, they wanted to learn how; he couldn’t care less. There does not appear to be any problem with his hand/eye coordination - he has dead aim at the Frontierland shooting gallery, for example. He has to have athletic shoes for PE but otherwise he gravitates toward pull on boots in the winter and flip flops in the summer, as well as Crocs.
4. Food preferences - he has a very short list of things he will eat. My other two were picky (me too) but grew out of it, and he’s picky to the extreme - what kid doesn’t like mashed potatoes? And he is pretty unreasonable about some preferences - he likes Cheetos, cheez-its, goldfish, etc. but would NOT eat actual cheese. Now he will, but is still pretty rigid, for example, he likes only “mild” cheddar cheese so I bought some mild cheddar sticks and he won’t eat them because they’re not the shape he’s used to. Same cheese, just not a slice. Ugh. He has maybe a dozen things he will eat (besides sweets, no problem there) and he’s a bread-a-holic.
5. No friends - he’s never really had friends; I used to try to get him together with classmates, but if they came over once, they didn’t reciprocate. He was more social as a preschooler. I will say also, we live in a small rural town so there’s not as many kids that might “click” with him. Also, he seems to be much more comfortable with adults than kids - I think this may be because adults are more likely to overlook his quirkiness due to politeness.
6. Won’t say I love you - he definitely loves us, but up until recently has not been very demonstrative. In the last few months he has begun hugging again. I remember realizing at about age 3 that he would not cuddle anymore and I thought that was odd. We are a family that says “I love you” often and he just will not. If I ask him if he loves me he will say yes, but “the 3 little words” are not part of his vocabulary. In conversation he said to me “I love Bill” (his stepdad, my husband) and I my jaw dropped - that is the closest he’s ever come. My two older kids totally love him and spoil him, to be honest. He’s got it good.
7. Bright, but underachiever - my former MIL is a piece of work. This child is her only blood grandchild - we call him the Little Prince of that side of the family - and she thinks that he is the most brilliant child in the world; in my reality he’s my 3rd bright child, kwim? She is a social climber with new money and she drives me up the wall, but anyway . . . she wanted to be able to say that her grandchild was in the gifted program and to be honest, he is very bright - he could easily read the headline crawl on the bottom of the CNN screen in kindergarten. His father pushed for him to be tested for the gifted program, and as my daughter was in the gifted program and me too, for that matter, in this same school system, I felt the only advantage to being in the gifted program was smaller class sizes, so I cooperated even though I didn’t think he had the self-motivation of a truly “gifted” child. It took 3 tries before he was admitted. But my son hates school, always has, and does not want to put forth the effort. It’s one of my most frustrating challenges because I don’t know what to do to motivate him. I always did what was expected of me in school; my older son wanted to please so he did well, my daughter is very type A so she did well, and this one? He couldn’t care less about pleasing anyone. I have no idea how to handle it. We’ve tried taking things away, getting very involved with his projects, rewarding good behavior, etc. and none of it works. The only plus to him being in gifted is this is the same group of kids every year, and they take almost all of their classes together, which makes him more comfortable.
8. ADD - as I said, all 3 of my kids have it. He’s on medication that doesn’t work well, but does help.
9. Does not like strangers - He likes staying in his circle of known acquaintances and is most definitely not a joiner - no scouts or 4-H or sports teams. There were other reasons why we stopped attending church, but one of them was that he dreaded going to Sunday school - way beyond dislike - and church services, and with other things going on I gave up that fight.
10. On the other hand - when he does decide to step outside his personal space, the result is kinda weird. For example, one Disney trip a few years back I bought a bunch (100?) of glow bracelets from ebay for us to use on the trip and spread a little pixie dust, too. We talked about it being a nice thing to bring joy to someone or to distract a fussy child, and he would see me and my daughter handing them out every so often and he wanted to do it, too. But he couldn’t just give one to someone and move on. He wanted to talk to them about him giving them the bracelet, to where it was just too much. I really can’t describe it but the result effect was just odd. Another trip he bought a little pin thing that you could program to spell out different things, and once someone noticed it he was obsessed with getting other people to notice it, too. He gets plenty of attention - good attention - so it really perplexed me.
11. Obsessiveness - he has obsessed over different things since he was old enough to talk. These days, he will become interested in one thing and that is all he will think or talk about for varying periods of time, but some are always ongoing - chewing gum is a recurring theme, for example, as well as Nerf and the Northern tool catalog. Last week it was throwing a baseball with my husband; this week it is Old Spice commercials.
12. Sensitive to tastes, smell - I know kids have a more bland palate than adults, but his is in the extreme. Certain smells, too - when he was younger he had to have a stick-up type air freshener held up to his nose when he pooped or he would gag and throw up. I mean, I know it doesn’t smell good, but his poop didn’t smell worse than normal, and he just couldn’t stand it.
13. Doesn’t want to sleep - sleeping has always been a challenge with him. From the time he was about a year old, it’s as if he tries NOT to sleep. He gave up naps very early. I put him to bed at 9PM which I think is an appropriate time for his age (12) and his wake him time for school is 6:30AM. He wakes in the night and stays up, or pretends to go to sleep but doesn’t and stays up an hour or two, and sometimes when I get up at 5 AM he’s already awake. And then he goes around with dark circles and his father blames me. He does not have night terrors, or bad dreams, or an uncomfortable room or bed; I’ve tried varying kinds of night lights/no light/lamps, etc. and none of it seems to make a difference. It’s not as though he has insomnia; he looks sleepy, yawns and so on. When I question him about it, he’s never said he can’t sleep or said anything was paining him or bothering him. He is not allowed to have caffeine when school is in session (Friday nights & Saturday OK).
14. He does not pick up on other people’s feelings - the most recent example of this is that my daughter was a finalist for a 4-yr full scholarship for college. We (me, son, daughter) were on our nightly walk when she got the call that she did not get it. Both she and I were very upset; we both almost cried right there in public, but held it together and just talked about how disappointing it was. He heard all of this but was completely oblivious to our state - chattering about other things, cracking jokes, hanging his head out of the car window like a dog on the way home - but he was the first one in the door and immediately said to my husband, “Gracie didn’t get it.” It’s like there’s a disconnect unless it’s his feelings that are involved - he’s very aware of HIS feelings.

Others of you have much more challenging situations and I feel like a whiny wimp even bringing this up. My biggest question is what can I do to help him? How do I deal with his increasingly challenging school subjects when he doesn’t care? I live in the south, which isn’t on the cutting edge of anything, and as I said we live in a small rural area with a backward school system.

The bright spot is that my son seems entirely comfortable with himself. So I guess he’s not the one with the problem, I am.
Sorry for the long post, and thanks for your help.
 
Well you hit just about every characteristic (it could be describing my son), clearly he is very bright and an amazing self adapter. Since Autism is an evolutionary genetic neuroligical variation it is safe to assume that the charactertics and maladaptive coomobidities you see in your older children are from going through life with out anyone understanding the source.

you have probably seen me psot this before but get a copy of Tony Attwood's The complete guide to Aspergers (availbel on amazon for $17) and read ti and you life and children will "make sense"

bookwormde
 
For us, we went through MANY years of searching and testing for our son who was FINALLY diagnosed last year (at age 14) with High Functioning Autism (NOT Asperger's because of the communication component). While it doesn’t “change” anything (I had long suspected he was on the spectrum, it was good to finally have a “name” for it, so that I could better educate myself how to best help him. He has multiple health issues, which have also been a challenge; however, he is a wonderful human being to know and love! Blessings as you seek ways to best help all your children.
 
Well you hit just about every characteristic (it could be describing my son), clearly he is very bright and an amazing self adapter. Since Autism is an evolutionary genetic neuroligical variation it is safe to assume that the charactertics and maladaptive coomobidities you see in your older children are from going through life with out anyone understanding the source.

you have probably seen me psot this before but get a copy of Tony Attwood's The complete guide to Aspergers (availbel on amazon for $17) and read ti and you life and children will "make sense"

bookwormde

I'm going to check my library for that book but will buy it if I have to!

For us, we went through MANY years of searching and testing for our son who was FINALLY diagnosed last year (at age 14) with High Functioning Autism (NOT Asperger's because of the communication component). While it doesn’t “change” anything (I had long suspected he was on the spectrum, it was good to finally have a “name” for it, so that I could better educate myself how to best help him. He has multiple health issues, which have also been a challenge; however, he is a wonderful human being to know and love! Blessings as you seek ways to best help all your children.


Thanks to both of you for replying.

I'm so conflicted - I've never been one of those "not MY child" parents, but I wonder in my particular situation what is the best thing to do. If I go the route to have him diagnosed - what does that provide in the end? Can I trust that the "experts" I have access to through my health insurance are capable? Even if I luck up and get a good diagnosis, then what? And what will it do to my son's self image to be diagnosed at his age? I know he would assume it was something negative. There would be no sneaking it past him; he's very astute.

Sorry if I sound so sour - what we went through trying to get help for my daughter was absolutely horrible, and it only happened less than 2 years ago, so I am a) still reeling from that experience and b) still paying the bills. In her case the bottom line is there really isn't help where we live for plain old mental illness - everything is geared toward alcohol & drug treatment, and she didn't have problems with either. So rightly or wrongly, I expect the same drill with getting help for my son. Maybe I shouldn't make comparisons.

Getting my older son diagnosed was a happy surprise - he saw what went on with his sister, and when he was having a meltdown for some reason while they were together (and she was on the right meds for her), she pointed out that he had "it" too and needed help. I took him to her psychiatrist and he prescribed meds that really helped on the first try.

But back to my younger son - if I get a diagnosis, how will that affect his schooling? I've had just a little exposure to IEPs ~15 years ago with my older son - he tested as having a LD for math and was put in a great class where he made a lot of progress - then for reasons that were not explained to me, they school called me in and said they had decided he didn't have a LD anymore and were going to put him back in a regular math class, which was baloney because he STILL struggles with math in college. I really don't expect a lot of help from this school system for my younger son.
 

My personal opionion.

It's worth a shot. You say you are in rural area but do you have a large medical center within a couple of hours that has autism specialists? We live right in a city with it "right here" but we know of people that travel 100 or more miles to come here.

The label doesn't change anything, he's still your son, he's the same kid he was. But if you can get services or network or something, it could help him.

Our DS will be 7 at the end of the month. He was diagnosed almost 2 years ago.

I know you said is 12. I have a friend whose son was diagnosed when he was in his mid-20's. It just helped put things in perspective. The most important thing is that you are already aware, that you are willing to look into it. As Bookwormde said, get the book. Research online.

And visit here. These folks are a great resource and we are a very supportive community.


Keep us posted.

:hug:

-A
 
I have one more question - regarding his rigidness about his preferences, how can I tell what is his personality and what is willfulness? Is it even possible? I'm especially concerned because he's with his dad every other weekend and his dad is of the opinion that he can bully Robert into "straightening up & flying right". No acceptance of the child as he is, and he thinks I'm a pushover. My son has a pretty miserable weekend every other weekend. :sad2:
 
I have one more question - regarding his rigidness about his preferences, how can I tell what is his personality and what is willfulness? Is it even possible? I'm especially concerned because he's with his dad every other weekend and his dad is of the opinion that he can bully Robert into "straightening up & flying right". No acceptance of the child as he is, and he thinks I'm a pushover. My son has a pretty miserable weekend every other weekend. :sad2:

Oh dear. To me, his dad's not recoginizing there is an issue is a reason to get the diagnosis. Like I said in an earlier post, there's got to be something somewhere even if it's 200 miles away.

That really sounds like it could be considered abuse, but you'd have a better case with a diagnosis.

As far as willfulness vs the Aspergers. It's hard. It's a little bit from column A and a little bit from column B.
 
I have one more question - regarding his rigidness about his preferences, how can I tell what is his personality and what is willfulness? Is it even possible? I'm especially concerned because he's with his dad every other weekend and his dad is of the opinion that he can bully Robert into "straightening up & flying right". No acceptance of the child as he is, and he thinks I'm a pushover. My son has a pretty miserable weekend every other weekend. :sad2:

Willfulness vs. personality? Does it matter. Not really, IMHO, and if you have a good diagnostician they can help you with issues like that. If you HAD a diagnosis, you would at least be able to get some help for him and “show” his father what might help. That can be a treacherous slope, when others try to say “if you would JUST do this”…how easy life would be if it were that simple! As stated, my son was 14 (almost 15) at diagnosis. He didn’t see himself “like that” because he had met autistic children in the past that were not HF. The psychologist worked with us and I used a workbook (a tad simplistic; but, easy to use with him). The workbook is called Asperger’s…What does it mean to me? by Catherine Faherty. We skip anything that doesn’t really fit DS; however, it was invaluable in my son accepting that how he felt and what he “had” would NOT limit his life choices…he can be and do whatever he chooses! I knew we had a break through when I picked him up from Fire Fighter’s Explorers one day about a month ago. The Fire Captain shared with me that he had been trying to break a “clique” of students who gravitated together, leaving some in the program to not feel they were a part of it. He had them interview each other one on one. One of the questions was “Tell me something about yourself that no one else in this class knows about you”. DS told his student interviewer he had HF AUTISM! I was shocked and pleased. I asked how the other FF Explorers took that news and the response was overwhelmingly supportive and accepting! I felt like DS had a breakthrough and an acceptance that day. He was able to share a part of himself and can still be a part of the group. I hope this helps you as you make the decision to get more testing. It IS expensive and you want the best…explore your options, check if you can get any suggestions from anyone in your area, form the school, etc on where to go. Try to go to someone who specializes in Pervasive Developmental Disorder, obviously your son’s issues aren’t as clear cut as a child that is able to be diagnosed at a younger age. I do hope that helps! Many Blessings to you in this journey, I can relate!
 
Thanks again to you both. His father's attitude really, really bothers me because Robert's such a great kid. He's happy go lucky and has a wicked sense of humor - we value foolishness at my house - and his dad for whatever reason thinks that being serious all the time means that people will take him (my ex) seriously. So he doesn't appreciate Robert's sense of humor at all.

Example - yesterday morning Robert was making his lunch, alone in the kitchen, and opened a new bag of apples. He put the apples in the fruit basket and then proceeded to put the netting (the bag) on his head and just wore it around, no explanation. I got so tickled and wondered what the chances are that he would forget and wear it to school. :laughing:
 
Life is certainly more fun with happiness, joy and SMILES! Sounds as if his Dad is VERY insecure....
 
The "rigidness" comes from several sources. First is sensory sensitivities and once you read some books on that subject they are easy to pick up on. Second is anxiety, which if you relate it to NTs who are anxious you will see the paralells although it is much more acute. Third is NTs are "compliant" because they have a social predisposition to "fit in" our kids do not so logic and reason are more helpful (and time consuming). Flexibility is one af the skills that are typically worked on first after an accommidating enviroment is created and anxiety is lowered to a managable level

Bookwormde
 
OP - Your first post described my 14 year old son almost perfectly. Expect for the sleep issues (he loves to sleep) and the affection (he's very sweet), most everything else is exactly what we experienced. He was diagnosed as being on the autism spectrum at 3 and we added Asperger's to the mix when he was 7. Having a valid diagnosis has helped us to get him the services he needs from his school district. Public middle school was a disaster for him and we were able to get a fully-paid placement at a private school with an Asperger's program. I think it would still be worthwhile for your son to have an accurate diagnosis because it may open up services that would be helpful to him. My son receives speech therapy at his school - not for articulation and language - but for social skills. He sees the therapist in a pair or group and she facilitates appropriate conversation, turn-taking, inquiring about the other person's interests, etc.

I particularly related to what you said about Velcro shoes. My son still doesn't tie his shoes and he has no interest in learning. I think it has to do partly with fine motor skills and partly with his attitude toward learning. I don't fight that battle. I just look online for men's athletic shoes with Velcro, zippers or that are slip-ons. He also eats tons of cheese crackers but no actual cheese! Go figure!:)
 
Hi. That description, with the exception of sleeping, (my son sleeps without problems) is my son. I have a question-I have taken him to three psychiatrist and a psychologist and they have all said no Aspergers. I feel otherwise but... With an actual diagnosis of Aspergers, what is different in what he would be offered at school? Right now, he is going through a phase of school refusal which no one including all school personnel seems to be able to help him with.
 
Others of you have much more challenging situations and I feel like a whiny wimp even bringing this up. My biggest question is what can I do to help him? How do I deal with his increasingly challenging school subjects when he doesn’t care? I live in the south, which isn’t on the cutting edge of anything, and as I said we live in a small rural area with a backward school system.

The bright spot is that my son seems entirely comfortable with himself. So I guess he’s not the one with the problem, I am.
Sorry for the long post, and thanks for your help.[/QUOTE]

You shouldn't feel like a "whiny wimp" he is your son and you want what's best for him!! Many of the things you've mentioned describe my son who was just diagnosed with Mild Asperger's along with inattentive type ADHD. It's all still new to me (part of the reason I started reading your post), but I do feel better having "an answer"to all the "why's" in our lives. I would do whatever you could to get him whatever help you can, in can't hurt!

Well you hit just about every characteristic (it could be describing my son), clearly he is very bright and an amazing self adapter. Since Autism is an evolutionary genetic neuroligical variation it is safe to assume that the charactertics and maladaptive coomobidities you see in your older children are from going through life with out anyone understanding the source.

you have probably seen me psot this before but get a copy of Tony Attwood's The complete guide to Aspergers (availbel on amazon for $17) and read ti and you life and children will "make sense"

bookwormde

Thank you for the book advice!! I am going to Amazon right now to order. Thank you:worship:so very much,
Laurie
 
Wow - other than the sleeping and the affection part, my DS9 is sooooo similar, except maybe a tad less? He was just recently diagnosed w/ADHD (very much so!) but I really think there is more to the story, especially about being in touch with OTHER'S emotions. I guess I am in the same boat - would having a diagnosis really help??? I know it would, but I am slightly overwhelmed right now. I am just now starting on this journey, one step at a time. You are not alone.
 
would having a diagnosis really help???

Absolutely, Knowledge is POWER! That is why I have NEVER given up on finding the answers. It IS overwhelming, especially when you get a piece of the puzzle one drop at a time. (((((Hugs))))) as your journey continues!
 
Absolutely, Knowledge is POWER! That is why I have NEVER given up on finding the answers. It IS overwhelming, especially when you get a piece of the puzzle one drop at a time. (((((Hugs))))) as your journey continues!

I know you are right - but it really is so overwhelming... Thanks!!!! :goodvibes
 
I know you are right - but it really is so overwhelming... Thanks!!!! :goodvibes

If you feel I can help guide you PLEASE feel free to PM me and let me know what I can do, even if it is to say “where do I go from here“. I am an RN, have a special needs background and several children with medical, neurological, learning challenges, etc. It can be VERY hard, I know both personally and professionally.:hug::hug::hug:
 
If you feel I can help guide you PLEASE feel free to PM me and let me know what I can do, even if it is to say “where do I go from here“. I am an RN, have a special needs background and several children with medical, neurological, learning challenges, etc. It can be VERY hard, I know both personally and professionally.:hug::hug::hug:

Thank you so much! I am sorry, OP, didn't mean to hijack your thread! I just wanted you to know you are definitely not alone...
 
Hi,

I was glad to find this thread. We have a DD(8) who was diagnosed with Asperger's last year. We have known from age 1 that she was on the spectrum, just wasn't sure which one. I had to pull out the law books with my daughter's school to get them to test her. A lot of people felt that a diagnosis didn't matter and that we shouldn't label her. We disagreed and I am glad we did. Having a diagnosis has helped us personally with learning how to parent and what to expect, and it has helped some of her teachers understand better. She is all set for life, we have everything in place that will prevent her from discrimination, and get all the help she can get now and when she is an adult. We personally feel that a diagnosis is the way to go. It is however an individual choice. We are parents who tell everybody we meet about Asperger's, we find it helps people to understand her instead of not wanting to deal with her. We do have some people in our family who refuse to acknowledge it and we just have learned to stay away from them.

Thanks for listening it feels good to know there are other people who understand:).
 












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