what do you make of my son? | Autism PDD
Fred, my 27 yr old son would sit in the closet when anyone came to our house, even relatives. From 2 1/2 - 4 he practically lived on his sit and spin. I mean hours and hours at a time. he got older and was obsessed with video games. He can build a computer in no time, but he is so socially akward. I fought with the school to get some type of services for years to no avail. He had so much anxiety. The bad thing was, he discovered as he got older that if he had a few beers, he could actually talk to people. Happily, he went past this phase. He has never had problems holding down a job, even though he never made it out of high school. Back in the early 80's, I had never even heard the word autism. So, I don't know how different he would have turned out with some kind of intervention? All in all he is a pretty good kid, I really like him a lot, as a fellow human, not just because he is my son. So I guess my point is, your son seems happy enough. I guess we can't all be just the same so there is no point in trying to make sure our kids fit the mold. What is the perfect mold anyway, (another thread) kwim? I think you are such a concerned parent, that if there are problems down the road, maybe with academics or whatever at school, I'm sure you will be on top of it.
The questions you were asking about those with "lower" functioning kids earlier: I consider Ethan lower functioning than a lot of the kids I read about in his age group on here. He only says 1 or 2 words appropriately , knows maybe 10-15 for labeling. Transitions are nightmares. Going out in public is a nightmare. He is terrified of noises ,of vehicles I mean any, so we get crying and shaking constantly when we are out. He only eats 5 yellow foods. Doesn't attempt to move any body parts to help with dressing. Can only walk really short distances he has almost no muscle tone, drools all the time. Chews on everything. Throws things and hits when he is frustrated. blah blah blah. Having said that, I am envious and have pity parties quite often. When I see other kids out and about and sometimes when I read about other kids here. The difference is I feel I know you guys here and I know that no matter where our kids are it's all relative. I also know that even though our kids may not be in the same place, if sometimes we don't understand every little thing, I know we all try to be helpful and sympathetic. So, to make a very long story short. No, I am not at all bothered by hearing anyones story. We really are all in this together. My god, I have learned more here than I could have in a lifetime reading or talking to our drs. therapists etc. Group hug!!!!!!
I liked the storyEven though he has AS,he had moderate signs of Autism at 3,but of course he just snuck under the wire for speech,( So, AS was his DX),his whole day was spent stimming,paceing, lining ,visual stims ect...,He was NOT social and would block out all people he was not comfortable with,No Eye contact,could not cope with peers ect.
I guess my point is that most people haven't seen where he came from,so they dont Understand what im worried about,So ,he is full of anxiety ,So, he talks to himself,so, we get head butted 100 times a day,I get, Oh he's shy,he is a great talker,or he s a real boy ,loves the rough stuff .
Yesterday, he brought his video game to Daycare,one of the boys came running up to him and said ,Hay I have that game ,later I will show you some moves,and I have another game that I like ect ..ect.
Zach closed his game turned to me and just started sobbing,he cant handle this type of Interaction,we had to remove him from the room,so he could recover ,so even though he seams NT at times we have a long road ahead.
I dont know what Im trying to say here ,Just a vent I guess,God bless you all ,Thanks for Listening.
Linda
I'm not sure I understand what this autism specialist means. Does he mean that you ought not to spend money on intervention because it may end up being wasteful if he's not ASD? Does he mean that getting him dx may mean he'll suffer the stigma of having ASD and it's not worth it if he can get by without a dx? Does he mean at his age seeking a dx might affect his self esteem?
At this point he may not be dx ASD because he doesn't have those red flags as you say. But as someone has said before, it may be a while before you realize there are some problems. These problems might be more apparent during teen years, highschool or the twenties.
But you might be able to circumvent these problems by honing his social skills now. If there was something I could do for my child to lessen the difficulties the future holds for him AND I could do it in a way that would not affect my child's self esteem, I'd do it in a minute. And you can do alot at home without getting a dx.
I would keep an eye on his play with peers to see how often he initiates play, whether he goes along with their initiated play, whether he is good at adding more fun to their existing play, whether he can use more help in learning how to enter a group of kids playing, whether he can stand up for himself around a pushy kid but do so in a nonthreatening way. There are so many ways to hone our kids social skills.
I think by helping him in this area, you'd be giving him a lifetime gift as it will likely help him get through the social mine fields of highschool and in the future help him with dating, marriage, etc...
I'm rambling....To Snoopywoman:
My youngest is 5 and he is now just getting the catching and throwing of
balls. We play a lot of keep away so he loves that. My middle daughter is
pretty athletic so she will also work with him.
Can I suggest an OT for coordination issues first? The reason I say this is
because we tried vision therapy for my oldest son when he was in 5th
grade.
We only tried it about 5 times and I was not sold on it. My girlfriend had
a great OT/physical Therapist who basically worked on the mechanics of
catching/throwing/running/balance. If I had to do it over again I would
have done OT at a very early age with my oldest. He had the funkiest gait
when he ran. He worked through it but I think soccer was histoy by that
time.
These are the sports we tried with our son.
Tennis
soccer
baseball
Karate
sailing
golf
swim
waterpolo
He does Varsity Swim and Waterpolo. We live in southern Ca. so Polo is
big.
We've done both OT and PT for over 2 years. While both have had great impact in his balance and coordination areas, in the catching/throwing areas they have had almost nil. He catches at about a 3 year-old level (he is 6). My dd catches better than he does. He cannot watch the ball and he has no depth perception. This is genetic as I don't either! I can, however, catch a ball well. I have somehow learned to compensate.
OT deals more with fine motor skills and they don't work much on things like catching/throwing. In PT, they worked on almost nothing but - and he had an AWESOME PT - who we can no longer use as we moved an hour and a half away in May. I need to find one around here - but don't know if our new insurance will cover it...
We are doing swim lessons right now (today was the 2nd day). I'm hoping it goes well... He also does horseback riding lessons. We did tumbling for almost 3 years - and that helped more than anything with balance and coordination. However, in our new area, tumbling classes are about 99% girls and it is a VERY small town. If I can find tumbling classes that are within a 15-mile radius that would be good for him, I will try to do so. His previous tumbling instructor used to work full-time with kids on the spectrum so she was just AWESOME. I doubt if we will ever find anyone like her again - and I am grateful that we had her for as long as we did. Getting ds through until kindergarten greatly improved his coordination and balance. In fact, his PT did a test on him at 5 year, 4 months and he tested at a 7 year, 3 month level for balance and coordination. Tested at just below a 3 year level for catching and throwing... She said it was one of the widest ranges she'd ever seen in a child.
So, this is why we are considering vision therapy. That and I have always noticed his problems with tracking and he does have a strabismus diagnosis (which I should have but no one has ever diagnosed it - it is not terribly obvious but you can tell if you look closely). His wandering eye isn't very noticeable either - but since I have it, I noticed it and took him in to get checked. Yup - he has it too.
Anyway, we're way off fred's post - but thanks for the info!
fred,
I wasn't going to get into this post - but after reading that your son loves RISK - I HAD to respond!
My dh has some AS-type symptoms. He cuts the tags out of all of his clothes. He sleeps with a fan on because otherwise he will wake up at the slightest noise (the fan motor blocks the noise). He actually functioned for a while with no fan, because I couldn't sleep with one before we had kids. Then, both my kids require sleeping with a fan because they too wake at the slightest noise and in order to survive (in other words, get ANY sleep at all!) we sleep with a fan outside of our door. Dh also has some odd mannerisms that I didn't notice until I was married to him for a while - and things he only does when he thinks no one is looking. He was very shy as a boy and he played RISK BY HIMSELF for hours if he couldn't get anyone else to play. While you would think he could get one of 12 siblings to play - he wore them out because that was all he wanted to do.
However, he was blessed with decent athletic ability and was born into a family with a VERY sarcastic sense of humor which you have to have to survive in that family (thankfully, I too came from a sarcastic family - so I fit right in!). So with those two things, he was able to fit in quite well and had several friends throughout school, including college.
Unfortunately, with the mix between us - which includes my complete lack of coordination/athletic ability and lack of depth perception - our ds did not get the best of both worlds. Fortunately, our dd seems to have. She got a good sense of humor and her athletic ability seems to be good for her age. She does a lot of things ds did not do at her age - including catching, throwing, hitting a ball.
Getting back to your original question - I too wondered why a lot of infant toys have spinning objects and lots of lights. As a few other posters said, I think it is the SEVERITY and INTENSITY of playing with these things that differentiates the kids on the spectrum from those that are not. We could not go to Menard's with ds because he would want to go to the fan aisle (which was right by the lighting aisle) and he would want to stay there for hours if we let him. Which we didn't - which would result in a total meltdown (around 18 months). That is not typical to be SO fascinated with fans or lights that you have a total meltdown over leaving the aisle and can't be re-directed.
Anyway, I think your ds sounds a lot like my dh. I wish our ds had gotten a slightly different "mix" of our genes. Even if he still had the social issues, I think if he had better athletic ability life would be easier for him. We are working on it, but it is hard.
Kathy - that post was awesome! But, I have no idea how to get ds into team sports. He just refuses to play anything that involves a ball (which pretty much most team sports have!). We are working on it and hoping that if we can get him into vision therapy that that will help his depth perception. We shall see!
Fred, I take BACK what I said about him being NT (NeuroTypical )- I think he is GENUIS level! Seriously what a smart little man! You are blessed!Thanks Autumn, I thought he was pretty good, too, and I actually asked his 1st grade teacher is some of the minor issues he was having could be actually due to 'giftedness' (which, interestingly, gifted kids tend to have social and sensory quirks) - but she assured me that he was just a bit above grade level, the implication being, no, not gifted :(
Snoop - your husband sounds a lot like me. I sleep with a fan, too - very light sleeper- I also have a persistent ringing in my ears that can be annoying at times. I drown it out with white noise. Weird, huh?
I also had lots of social problems in school, but compensated with above average ability in sports. The girls got the short end of the stick - they got more autism and less athletic gifts than my son. He's not overly athletic, but he can hang in there, while the girls have trouble getting out of their own ways, poor things :)
Being good at a HS sport definitely gives a kid a distinct advantage in HS. Sports are very important to HS boys and if someone is athletic, he is respected. Some quirks might be overlooked to some degree if there is a strong athletic ability. But I do think it has to be a HS sport. So if your son turns out to love and be good in martial arts, well, that's fantastic, but if he's good at a HS sport, that is more socially advantageous for him.
I hate to bring this point up, but it's true. There are certain personalities that gravitate to certain sports also. Tennis and track are more likely to attract the less aggressive type of boys. Baseball and especially football may attract the more aggressive type of boys. The more aggressive boys are less likely to overlook quirks in their peers. My husband used to say God help you if the opponent's team members pick up on a kid's quirkiness because then they will do disgusting things like spit in your ear while they tackle you. His own team members may be less likely to overlook his quirks unless your son is good in football.
Also, regarding social skills - you said your son has pals and is well regarded by them. But age 7 is still fairly young. It's around this age that kids start to become more discriminating, less tolerant of social faux pas. It will get worse and be at it's worst perhaps in HS. I think it absolutely could not hurt to help him hone his social skills NOW. Even NT highschool kids need help with their social skills. This is why what your neuro said struck me as odd. Is she advocating a do-nothing don't-ask policy UNTIL the problems are very clear? If you learn your son has social problems at the age of 14 or 15 you might be hard-pressed to make very pronounced changes in his social abilities quickly during his highschool years to benefit him. Some damage to his self-esteem might have already occured at that point also.
There are social skills books that are pretty helpful. I like that book by Cathi Cohen (forgot the name though). I would try to read that.
Lots of ASD children are not great at sports. Many NT children are not coordinated enough to make a HS team either. So if your son isn't good enough to make the team in HS, he should have something else to give him some social advantage. The band is another option for him. Kids in the band are their own unique club. They tend to stick together and almost appear impervious to the ridicule of other cliques.
Regardless of sports or band, I think your son would benefit from social skills training. How often does he go over to his friend's homes and how often do they come over? I would encourage him to spend time with his friends at least weekly. It is only by spending time with his peers that his social skills will improve. If you keep an eye on how they interact, you could also give him pointers after his friend leaves. Kids who are flexible in play win friendships. Yet an intimidated child is also less likely to stand up for himself if the other boys are pushy in their play. I would teach your son ways to be flexible. For example, if a group of boys are playing a game and your son wants to enter the group play, he should comment on how cool some aspect of their game is, or he should suggest a way to improve their existing game or make it more fun. He should not simply ask, "Hey, can I play too?" or try to change their game around too much. Apparently, psychologists tell us that most kids will say "NO!" to this polite request to join in. If other boys are being rude to your son it wouldn't be good for your son to say and do nothing in response. This may signal weakness and then he may become an even greater target of pushy kids. Some psychologists suggest the child should just say, "Whatever!" and turn away. It shows their behavior isn't important to him yet he has stood up for himself in some way.
One of the first books I read before my son got the autism diagnosis was Late Talking Children by Thomas Sowell. I was convinced that my son did not have autism, but rather something else going on. Sowell has interesting data on quirky/late talking children (who do not have autism) of gifted/engineer type parents. My family is composed mainly of engineers, pilots and musicians. Most of the males were socially inept youngsters and were obsessed with things that we all would call red flags at this day and age. Unfortunately, my son turned out to have autism, but I can think of 3 other males in our family that fit the profile of your son. They were considered "late bloomers" socially and are all successful engineers today. Anyway, I think I've gone off topic here, but Sowell's book did give me a non-autism perspective to some of my son's behaviors.
anyone can have quirks that could fall into the red flags......even more than one, and still not have a spectrum disorder at all. and most persons have had sensory issues now and again. however, just because there are red flags doesnt mean they are on the spectrum. my son at age 7 mos. had every single red flag and over 2 years later still has all but maybe 2, plus many cooccurences. he has pdd, or asd depending on what he is on the days hes seen by docs. but, i spent 2 years getting anyone to diagnose him.
but my sons were across the board, phenomenal rote memory, emotional regulation problems, for awhile no eye contact and no speech, sever regressions lasting months, obssesive, ritualistic, stereotyped behaviors, can not stand to be around children, and so on and so on. the things you were listing, alone by themselves, would not be thought of as a red flag for anything, at least not here in marylands medical systems.
just my opinion, and might i say long tedious experience.
Thanks, Fred.We have somewhat similar lives!
My twin girls are NT, but my son is mild on the spectrum. My DH is not an engineer, but his Dad and Grandfather are/were both Brilliant Engineers. Both FIL and G-FIL have/had photographic Memories - and I think Bug does as well.
MIL and FIL were here for Fourth of July - and MIL and I had lots (and lots and lots) of conversations about this very thing. She does not think Bug is Autistic - but then goes on to share with me that DH's Brother did not speak until he was four, and he repeated Kindergarten!
LOL - I wanted to say, "Uh, that is considered Autistic, now!" BIL is happy, he has a job, he finally moved out of their house (at 28) and he just got married. If Bug can hold down a (good) job, and find someone to marry him (or not) - I'd be very pleased. It did make me wonder, though, where is the line? Of course, I hope that with early intervention, Bug will not have to repeat Kindergarten - and maybe because he was labeled (and is getting services), he will have an easier time of school/life.
???
I'm waiting on an e-mail from his teacher about her opinion on his placement for next school year. He has one year left of preschool - and I want to make sure we get it right!
Hey there -
I havent read every response but I wanted to add to this...
This may be my dd. I know I have posted before so I am kind of repeating myself but turning 5 seemed to change everything for her. She is like a completely different child. Six months ago I was so very worried about putting her in Kindergaten and as of today, I am pretty confident she will do fine.
Her speech has improved, no real delay just really poor pragmatics and grammer. She had no idea on how to explain herself up until recently. She just didnt "get" how to use language. It scared me to death.
When she was two to three, I knew something was up. I knew nothing of autism then and if I did, I would have done so much more for her.
Looking back, wow. She used to twiddle her fingers constantly. She was pretty repetitive. We have a play center in our mall and for some reason she would pick out corners to do things in...like everytime we were there she would run up to a family in the same corner and just tell them her brothers name or describe what she was wearing. It was very odd. In another corner she would spin, with her eyes in the corner of her head of course. She also ran the outside of the play center several times before she decided to play. She used to "tag" kids that had no idea she was playing tag. My heart broke everytime she did something like this, I wondered why she just couldnt "get" things.
She had a long, long period of echolalia and reversing pronouns. Language has been her biggest "red flag."
Finally, my sister told me about her finger twiddling and how she saw a little girl with autism do the exact same thing. I went online and read as much as I could. I couldnt sleep the first night, I was crying so hard. It was like reading about her life story.
She has seen doctors and it was hard to for them to see what I saw. It takes getting to know her to see the real problems. Mainly because she comes off as very social and likes to talk, almost non stop. I never got the dx but in my heart, I knew what I was dealing with because of her younger years.
Maturity has changed her dramatically. She never qualified for services. I got her some speech therapy but realized that preschool was a better option. She learns better from watching other kids.
She is doing so well. A lot of the issues she had are gone and as of now, nobody would assume she was different...unless she got excited and did the finger stimming. If that went away, she would appear NT.
I also wanted to add, my Dad is super smart. He is a self taught computer programmer that didnt even finish HS. He came off as lazy and unmotivated but once he found an interest, he went all for it and became very sucessful. He raised a family and has had the same job for 30 years - he hates change. He even has had the same hair dryer since I was a baby:) I dont know how it still works. He is quirky and banged his head as a child...I did too. He has no friends but is very loving to my Mom and to him, that is all he needs. He is a good dad and one of the best grandpas around. He seems like he has many AS traits. Truthfully though, he is VERY private and even though we are close, we are not close enough to "know" eachother, if you know what I mean...
Same with my nephew...very socially off but a very, very smart loving kid...as well for my Dad's Mom, she skipped grades and tells me that she never had a real friend until she met my grandfather....
Makes me wonder...
My son is 6 and a half and he LOVES baby toys
I am so mean because I don't let him buy them. I worry that when his NT friends come over they will make fun of him. I know you are thinking, let him have the d**n toys Momma! But i just bring myself to buy him baby toys. I do, however, let him spend lots of time in the baby toy isle playing with them. I also bring out a couple of the baby toys of his I had saved on occasion for him to play with. If it were up to him, he would only pick baby toys to play with and not regular toys. Luckily he is obsessed with Transformers right now, so I can steer him over to them. Obviously they are meant for babies, so babies must be the "norm" for these behaviors, right?
I too have always been very quirky. I got in trouble in 3rd grade for kicking pine cones all over the playground because I liked watching them "roll". I was always in advanced placement classes. I have always had a really hard time fitting in socially. I have had lots of wonderful girlfriends (girls that were my friends!) but I think if you asked any outsider they would say we were all major nerds LOL I still think I am sort of immature socially compared to other people. This has been especially hard as an adult because I still tend to forget social rules, or I have been accused of saying things without being tactful about them and such. I don't know, I guess if your son is not being affected by his "quirks" then I wouldn't worry about them too much. He sounds like a great kid.
By the way, when I say NT "friends" I mean the kids of other moms that I am friends with that come over. he doesn't actually have any friends of his own :(
Ya know our docs TOLD us to buy toddler and baby toys ONLY for our 8 year old becuase he is in reality two years old - it makes a lot of sense to us and he enjoys toys at the level he is really 'at' - so buy them! who CARES what anyone thinks?
As far as no friends, I can relate - not just for my son but my whole family - we have not been invited anywhere in YEARS.
Fred - Thanks. You sound like a caring guy. AUTUMN..I READ YOUR POST AND AGREE WITH YOU..I TO BELIEVE THAT WE ARE IN THIS AUTISM THING TOGETHER..I ALSO GET GOOD SUPPORT FROM THE PEOPLE HERE ON THIS BOARD. BUT LIKE YOU I ALSO BELIEVE THAT THOSE OF "US" WITH MORE SEVERE CASES OF AUTISM IN THEIR HOUSES, ARE ON A LITTLE MORE ROCKY OCEAN AS YOU PUT IT. RESPITE IS HARD TO FIND, AND THE "EXPERTS" ARE ALL FOR PUTTING THE CHILDREN IN GROUP HOMES OR INSTITUIONS, RATHER THAN HELP YOU HELP YOUR CHILD. THOSE WHO HAVE LESS AFFECTED CHILDREN ALSO HAVE ISSUES TO DEAL WITH, AND MAY HAVE TO FIGHT FOR THE SERVICES, BUT ARE THEY COMING UP TO THE WALLS WHERE "DUMPING " CHILDREN SEEMS TO BE EAISIER THAN HELPING TO "FIX" ? pEOPLE WILL SAY I AM NEGATIVE OR CYNICAL, BUT ALL MY SONS LIFE I HAVE HAD TO FIGHT, AND NOW MORE THAN EVER...AS MUCH AS I HATE THIS NEGATIVE FEELING, IT IS WHAT HAS BECOME OF MY LIFE AND MY SONS...I GUESS I COULD GO ON AND ON..BUT I WOULD JUST UPSET MORE PEOPLE THAN I PROBABLY ALREADY HAVE. Fred, I think that the type of play you described your son having as an infant/young child would only be a red flag if it was accompanied by other more worrisome issues, like language delay (or using language in an unusual way) and social delays. On it's own, the play you described does seem to be pretty normal for very young children. I think the flag comes in when the stimmy play always seems to be more interesting than human contact. KWIM? Though I would bet that the mix of genes you describe may account for the degree of interest that different children express in different kinds of things. In May, we went to a first communion party that had a kids DJ. The DJ had a strobe light. Every kid there was totally fascinated with it, especially the younger set. And for the infant/young toddlers it was almost difficult to distract them. So I think it really does boil down to the combination of flags and not really anything standing on it's own. I understand too, the potential for resentment of us gray-area parents must be HUGE. OTOH, it IS harder to get services, if you cannot get a dx. And I have read, if a parent sets a precedent for getting services, it is generally appreciated by other parents, not seen as competition. If my kid's dx brings in more dollars to the district, and she is high-end, maybe some of those dollars are going into funding a position or buying equipment that the more severely-affected kids will benefit from even MORE than my kid. So ... I am not sure there is a rational place for resentment, even though I certainly understand it. I do not think that makes me a fraud or a Munchhausen's Mom, or anything ... does it? no, no! Of course not, Linda! 'twould be nice if the school's just did the right thing regardless of severity, and then there's the whole issue of the 'fall through the crack' kids that parents of HFA kids have to deal with (not getting any services because they are not so obviously impaired). Different issues. Be nice if we didn't have to worry about it all and could trust those charged with educating them. (hey, I've hijacked my own thread!). VCUDDY, and all whose kids are severely affected, my heart goes out to you. I think all the time about how difficult it can be and belonging to this board has given me a deeper appreciation of that. And please, do not worry about upsetting those of us whose kids are milder. I do not see anything divisive in your post. Fred -- It WOULD be nice if there were enough staffing and funds, for all and every. Oh, would it! Rigth now I am feeling very grateful for having chosen our SD ... but, it is summer and we have not started applying the IEP yet! Autumn, thanks for clearing that up - I'm glad that you're not annoyed by what passes for autism these days (and admittedly, there does seem to be at least some kids that are being diagnosed that really do seem to be just quirky). Although my kids are not severely affected (they are mild-moderate, probably leaning towards mild, according to our neurologist), I do agree that things would be much different if they were on the severe end of the spectrum for the reasons you mention. It is hard for us, but frankly, I'm not sure it would be that hard if there were only one of them. In other words, the degree of difficulty for us has as much to do with them being twins than them being autistic. It brings up a whole can of worms - like, the fact that respite is available to us, but I decline it because I figure someone needs it more than we do. I sometimes wonder how parents of children who really need ABA to learn academics feel about parents of 'quirky' kids hiring lawyers and advocates and demanding these precious resources for their own kids, who could learn via more traditional methods. There's a whole host of issues surrounding the 'spectrum' nature of this condition - I'm just not sure if bringing them up would start a war, so I've never really brought these things up before, but I do think about them - especially how my posts must sound to parents who are going through more challenging things thatn we are. The one common thing that we have, though, is worry about our kid's futures. The day to day, moment to moment concerns might be different, but it's probably the same, long term worries that keep us all up at night. Yup, Fred, you'd've been TERRIFIED. I remained in the dark about T for ages, because of that very thing. She really did not have frequent stims or obsessions, but in retrospect ... I'd've been terrified too! I do not think it would have helped. She got EI from age 2 on, anyhow ... speech and OT. And she is one of the kids I think will outgrow services, if not diagnosis. I hate the gray areas, but she is in one!!! Hi Fred, just saw and read your question! FRED WRITES: do you think that in some (perhaps many) cases that what's being diagnosed as 'autism' is really not? I sense that you sometimes take offense to some of us who have autistic children, but do not fit the stereotyped image of autism. PLEASE do not think I am taking OFFENSE. It is as one of the other threads posted, email cannot accurately express emotion! I believe strongly we are ALL in this together and have posted as much on another thread. However at the same time I also believe that those of us with low functioning children are in a, perhaps, more turbulent ocean for lack of better term. When you literally are a 24/7 parent who has to go into each room with your child and who is black and blue from your childs agression, when you can hardly find anyone to do respite because your child is so intense, when taking a vacation with your child is a total fantasy because it will never happen, when you have already had a team of docs tell you your child will no way ever be independant, well,.....I guess I DO believe in severity. BUT I still say we ALL are in this together on the 'ASD spectrum', and if anything, people who have it harder should make those who have it easier grateful!
He stopped lining things up around 3. He began speaking well by four. He makes eye contact now, but will still look away in extreme social settings. He stopped chewing his shirt in second grade. He made a large number of friends in between grades 4 and 5. He plays football, baseball and dabbles from time to time in basketball. He is not an allstar, by any means, but is not bad. He outgrew me a few months ago and now stand at 5'9". His father is not social. However, his father was always what I call a "motorhead". He could take a car engine apart and put it back together in his sleep. He now does that with computers. We have laptop parts everywhere. He has never been trained in any of this. It just came natural to him. The above is part of the reason I waited so long to have Liam assessed (3 year old). However, my gut tells me he is more affected and will need assistance where his older brother did not. So Fred...I get where you are coming from. I think there is genetic issues at play....perhaps autoimmune with added enviormental issues...I don't know. But when you look at all of these different buckets, they all seem very alike from a 50,000 feet view (Presenting the same way), but different other ways (outcome). His father is not social. However, his father was always what I call a "motorhead". He could take a car engine apart and put it back together in his sleep. He now does that with computers. We have laptop parts everywhere. He has never been trained in any of this. It just came natural to him. [/QUOTE] Yes - exactly. This is just like me. I'm a 'self taught' software engineer and have been in the industry for fifteen years. I taught myself everything - it just is intuitive and easy for me. I sometimes think that ours is a specific neurology that is, perhaps, more "delicate" - and susceptible to disorders - but, if things fall into place, you get an engineer or a computer programmer or mechanic or something. would not know HOW to do a video game much less be into it [/QUOTE] I just have to disagree with this one part of your statement autumn...no offense! But my nephew is considered classic, severe autism...he is now 17 yrs old...he is non-verbal and measures as MR...he is a computer and game whiz!!!!! He can play any game and LOVES to sit at his computer for hours surfing the net and playing games...he is very much into it! Also, Fred I just wanted to let you know that my 9yr old was a lot like your son was...he was into spinning objects and lining things up...he was VERY quirky in the way things had to look ( he would only eat his sandwiches cut into triangles) I had to cut the tags off of his clothes because they bothered him so much...he seemed to outgrow a lot of those traits as he got older, and the ones that are still there, he can easily cope with now...he is now in the gifted program at his school and has many friends...he still gets obsessed with certain things and talks my ear off about them and one of his favorite past times is to take things apart to see how they work! I have no doubt that had I taken him to a doctor when he was 2 they would have dx'd him as ASD...especially because at that time the only talking he did was echolalia...and prefered to play alone and didn't appropriately play with his toys...at the time I didn't know about autism except for my nephew and Logan had his quirks but in no way reminded me of my nephew. I think you're right when you say that depending on the mix you get, it decides if you are going to be an engineer or not!
I guess it is much easier for me to understand a 17 year old with CA into computers, but a 7 year old with CA into computers and video games would be a HUGE stretch! Fred, I am glad that your son is so NT! He sounds like a sweet happy boy! I posted this on the 'indistinguishable' thread in response to someone else's question, but it got me thinking and now I'm curious about what others think of my son. He was so 'classic' autism when he was a very small child - spinning things, lining things up, obsessed with wheels, fans, the dryer, echolalia - I mean, we're talking the poster boy for autism red flags - many more red-flag behaviors than my daughters had - but this was when he was very, very young (probably less than two) and he outgrew these behaviors and never had a speach or language delay, etc. We never thought to get him evaluated when he was exhibiting these behaviors because he always had good language and seemed social enough and connected, very sweet disposition - no problems at all - we didn't know that these behaviors were 'red flags', and since he was hitting all of his milestones (early, in most cases), we thought nothing of them. It's not clear to me whether the former behaviors were because he is or was on the spectrum or if these habits and mannerisms are just part of the maturation process of some infants - just a phase they go through on their way to developing language and more abstract play - and that the reason that these are seen as 'red flag' behavior is that they are IMMATURE behaviors, and when they're present in an older child, they mean that there's a developmental delay. I'm guessing there's a reason why most infant toys are spinny or blinky - so, this sort of play really could just be immature play, rather than 'atypical', and only noteworthy if it persists past infant/toddler phase - anyone? I'm really not clear on this at all, but if these are ever NORMAL, but immature behaviors that some infants go through, then there's implications for 'early diagnosis' that are pretty obvious, but I digress (even though this whole tangent is a digression :) Anyway, my son - so, he just turned seven and yeah. Everyone just thinks he's the nicest, sweetest, kindest, most considerate and personable child. He's just finished first grade and did very well - at or above grade level in all subjects and nothing but positive comments from his teacher and the in-class aid - he's reading and writing chapter books, etc. He's very competetive and loves to run and race - just completed his first 5K race with me a while back and had a ball. He has pals at school and gets along well with all of his same aged cousins and relatives. He has no problems with eye contact (except when he's in trouble for something) and will pick up and play and engage with other kids appropriately, though he can be a bit bossy and overbearing at times. He still has some quirks - he's really into video games, especially 'Roller Coaster Tycoon' - which kind of feeds into a semi-obsession he has with Roller Coasters. He's very sensitive and can talk your ear off about whatever he's into at the time, though I think lots of seven year olds are like that. He has over senstive hearing, and would cover his ears up until about a year ago. I mean, this is all pretty classic autism stuff, it's weird, huh? Weirder still since his sisters are both diagnosed. Just goes to show, I guess, that even the most classic kids can turn out to be somewhat normal (at worst, quirky) and that these traits, wherever they come from, run in families. Perhaps it's early manifestations of an engineering-type neuroglogy? That would make sense, since I'm an engineer, and it'd be actually quite difficult to be an engineer without hyperfocus and perseveration - both often considered 'autistic' traits - and I and most of my collegues are not the most socially motivated people (not inept, just not that interested, really). Why my daughters are disabled by them and he is not I have no idea. I also realize that he might have problems down the road when social and academic demands increase, but there are not warning signs at all, currently (and frankly, I had problems in school starting at around sixth grade, so, it wouldn't surprise me if he does, too). FRED WRITES:Everyone just thinks he's the nicest, sweetest, kindest, most considerate and personable child. ...at or above grade level in all subjects and nothing but positive comments ... very competetive and loves to run and race - ...has pals at school and gets along well ...no problems with eye contact (except when he's in trouble for something) and will pick up and play and engage with other kids appropriately, though he can be a bit bossy and overbearing at times. He still has some quirks - he's really into video games, especially 'Roller Coaster Tycoon' - which kind of feeds into a semi-obsession he has with Roller Coasters. He's very sensitive and can talk your ear off about whatever he's into at the time, though I think lots of seven year olds are like that. He has over senstive hearing, and would cover his ears up until about a year ago. This sounds like a perfectly normal 7 year old guy to me and not a BIT like 'CLASSIC' autism. Classic autism would not have pals, would not be at grade level, would not be competitive, would not even KNOW when they were in trouble, would not know HOW to do a video game much less be into it, would not talk your ear off about ANYTHING since they could not even carry on a conversation, and certainly would not have PALS! by classic, I meant when he was very young - he had all the 'classic' red flags (spinning things, lining things up, echolalia, etc.). He never had a language delay and always has seemed social enough, though - so I guess the only domain he was every 'classic' with is imaginary play or atypical play, so I'll take your correction. I'm not clear on whether these red-flag behaviors are just IMMATURE behaviors, and only red flags if they persist past very early childhood. ...and if he were to be diagnosed with anything, obviously it would be Asperger's syndrome, since he had no language and cognative delays. It's just weird - those early behaviors and the lingering issues with emotional over-sensitivity, literalness (hard to tell what's age appropriate, here), and obsessions and with my daughters actually being diagnosied, it makes you wonder. Autumn, do you think that in some (perhaps many) cases that what's being diagnosed as 'autism' is really not? I sense that you sometimes take offense to some of us who have autistic children, but do not fit the stereotyped image of autism. I get this sense from other parent's groups at times, too - kind of a dismissive attitude - that your child isn't really autistic - that this (citing a list of severe traits) is really autism. NP - if so - I can empathize with that opinion (if I'm reading it correctly, which is hard to tell in writing) - just curious and wanting to learn (and be sensitive to) other viewpoints. As you may know, my daughters carry a 'classic' autism diagnosis (autistic disorder - not PDD-NOS or Asperger's), but are mild-moderate in their severity. I think you are right about the toys, Fred ... maybe it IS a "normal" phase, in neurotypical kids. Or maybe your family genetics are such that your child's brain tends to be less-developed at birth, but does catch up, in the early years ... maybe lots of kids' DO! It will be interesting to read about this stuff, in 20 - 30 yrs ... if I am not too senile! My little cuz is very high functioning and didnt get the Asperger label till this year and he is 12 years old! He has always been in the gifted program and sweet, social with adults somewhat, eye contact not a big deal and totally adorable but in his younger years he had major tantrums and many labels of ADHD, dyslexia, ODD and sensory issues...no one seemed to noticed he had no friends till middle school and now it is being addressed. He has great difficulty with handwriting and is allowed to use computer..his writing is perfect but he tires very quickly and is a total perfectionist.. he had no awareness of social cues and rarely has conversations with us but will answers questions and appears pretty normal if you are not looking too hard:) He has an IQ of like 146 and plays chess with high school kids..he also had a huge language delay at 3-5 years old and needed speech for articulation. He is has always been obsessed with legos, knex, and building robotics and wants to be an engineer:) I am not sure what his mom could of done different with him..he has overcome dyslexia and speech and even his ADHD is subsided...he has problems with writing stories using his own imagination but no problem writing a report on a book he has read especially if it's one he is into..like Harry Potter:) I see his language way behind his peers IMHO and way immature considering he is so smart and gifted..but I love him so much and hope he will be okay. He is a handsome fella:) The school is going to put him in speech for pragmatics and a social group of kids just like him so hopefully at 12 it is not too late to get him help..20 years ago he would of just slipped through the cracks and been considered a nerd and got not a second look. Sign of the the times:) Fred, I haven't read all the replies but wanted to say that since jaden's diagnosis, we have looked around our family and noticed and at least two of the children have autism 'quirks' but would never be diagosed with autism. They talked on time and interacted with others well. But have tics, sensory issues, have a hard time being 'social' etc. My husband also has major aspergers symptoms but would never be diagnosed with it. Too high-functioning. Thanks folks - we do like put these kids under a microscope, don't we ;) I thought I'd share this. This is a story that my son was working on a couple of months ago. I remember reading it and feeling ambivalent - was it showing some sort of longing - some sadness - OH NO - it's about TRAINS! Then I decided I was waaaaay over analyszing the poor kid. I just read it again and figure that, no matter which way it swings, he's a sensitive, kind, creative little guy and I should focus on that rather than the other stuff, kwim? Anyway, here's his story (spellcheck helped him out with the spelling, but the words are all his. I think it's pretty good for a six year old firs grader): Chapter 1
. Now he wears anything, as long as he thinks he'll impress the girls in it.h
With my autistic son, I was SICK to my stomach with worry. His symptoms were so obvious by 2 to 2.5, that there was NO sweeping it under the rug, or attributing them to some other quirk. He stopped talking, hid from people, rocked back and forth, would not look at us AT ALL, even right up in his face. He was like night and day compared to his same age cousins. I can remember his day care provider at the time bringing up concerns to me, in the gentlest way she knew how, and my response being, "What are you saying, that he's autistic or something?" I already knew it without doing much research or seeing a doctor.
Of course, I realize there is a whole spectrum out there, but I think that little quirks like my middle son had don't necessarily indicate a spectrum disorder, but sometimes just constitute personality. Some kids are just a little goofy or strange for a while, then they change.
nakama
your son and my DD are almost exactly alike in there quirks. I've felt as she has gotten older she is on the spectrum but it doesn't seem to affect anything right now. She finished first grade also with all good marks and I always get told she is a great kid to have in the classroom. She talks all the time about things she likes and doesn't seem to notice when your not listening to her. she has had a hard time keeping friends because she will talk about subjects like death and other things that most kids dont want to talk about or care about. By the way she is really obsessed with death, not sure why. she still covers her ears when there's loud noises and now I've noticed she will flap or wiggle her hands by her side when she gets excited.
Sometimes I think about getting her evaluated but I'm not sure if that would make a difference in anything. I wonder the same as you why my son is severly affected and she isn't. I do believe she is on the spectrum, I'm worried about her social skills more than anything else right now, sorry I'm rambling 
Once upon a time there was a little train named Thomas. He was lonely, and he had no friends. Everyone else had a friend. He didn’t have fun days. One day in the morning Thomas woke up, there was a pink train in front of him. The pink train asked “What is your name?” The other train said “My name is Rose.” Then they both asked “Will you be my friend?”, and they both said, “Yes!” The two trains were both happy! They played hide and seek, tag and they got to go to each others houses. They never stopped being friends. Then they had to go home, so they both said, “bye” to each other. They ate dinner and they dreamed about each other. They went to each others houses.
The next day they discovered a new track, and decided to follow it. It went into a very tall mountain. There was a big tunnel they went into. Inside they saw another track. They asked, “Which way do we go?” Rose said “Maybe we should go to the right?” They went the wrong way! They said “I think we went the right way!” Then the track stopped, so they had to go backwards. While they where going backwards they where scared, they saw that it was a little circle and then they heard there moms calling them. They had to go home right away, so they went down the right track. The track crossed a busy road. The cars wouldn’t stop. They had to wait for the light before they could cross the road. They crossed the road to Rose’s house where they had a sleepover.
When they woke up in the morning, they went to play in a big field where there was a loop in the track. They played tag. They saw another track, Rose didn’t want to go on it, but Thomas wanted to explore the track. Rose said “I’ll go make some more friends, while you go explore.” Thomas said “Ok, I’ll see you later.”
Rose made three new friends - Diamond, Brookwood and Amanda. When Rose came back to play with Thomas, she introduced him to her new friends. Afterwards they all played together. They played chase. They played so long that by the time they were done it was midnight. Of course they had to go home. That night Thomas and Rose heard a loud noise. They went out side and there they saw fireworks! They were green, red, blue, purple and yellow. Some were pictures of trees, flowers and snow men! It was a great show! Thomas and Rose yelled out loud “WOW!” Then they went home. Thomas and Rose thought the fireworks were the best things they’d seen in there whole life! They just couldn’t believe it! They said quietly to themselves “I hope there are more fireworks!”
Fred,
I know some boys who started out like your son, mine included who are not on the spectrum. I have been looking at people generally in a new light since I have started my autism journey. Most people have one thing or another that they have learned to compensate for. Show me a perfectly normal person, I will tell you, you just don't know that person well enough. It is important we build up our children's self esteem, understand them well enough that we equip them to play to their strengths and compensate for their weaknesses. Some of us by nature are more people oriented than others. My belief is that those of us who are not as people oriented do not derive the same amount of statisfaction from being a people person as those who are.
I never had too many friends. My parents had lots. The return (too many users and fair weather friends) was not worth the investment IMHO. I usually have a few good ones. I had always been happy with my life that way.
I agree with your doctor:
"She had the very common and sensible notion that yes, we all have quirks, but these quirks should only be considered a disorder if they are affecting your life in a negative way."
Anyway, my son - so, he just turned seven and yeah. Everyone just thinks he's the nicest, sweetest, kindest, most considerate and personable child. He's just finished first grade and did very well - at or above grade level in all subjects and nothing but positive comments from his teacher and the in-class aid - he's reading and writing chapter books, etc. He's very competetive and loves to run and race - just completed his first 5K race with me a while back and had a ball. He has pals at school and gets along well with all of his same aged cousins and relatives. He has no problems with eye contact (except when he's in trouble for something) and will pick up and play and engage with other kids appropriately, though he can be a bit bossy and overbearing at times.
The above are things to celebrate about your son. I would not worry about his quirks and ability to talk so much about his interests. These days most boys his age are like that, I guess its the result of the age we live in, have you tried being around older boys, its the same. I was so worried about my son until I hung around other kids his age long enough. I make mine bring up topics that are of interest to me and others and he is doing well discussing other things. Redirection is all I have to do once he starts and he lets his issues rest for a while.
Being such an aware parent whenever cause for concern shows up you will address it.
Concernedpa.
Wow!! What a great story! Your son has quite a talent.
This is what I would do if my son was much younger and felt that he may
benefit from some social supports.
1. Make sure that he learns to ride a skateboard/scooter/bicycle very well
2. He has a good grasp of major sports and teams as well as the name of
some players
3. Make sure he plays at least one team sport
4. He masters playground sports (kickball/basketball/handball/four
square
5. Develop good organizational skills/ homework,schoolwork,
6. Invite many of his friends as you can for playdates. See how he plays is
there a lot of give or take or is it one sided?
7. Does he get a lot of invitations for play? birthday parties? if not find out
why.
8. Find out what most of the boys are doing with their leisure activities.
Give him the skills to be able to talk with not to other children.
It is tough to stand out in middle school. It is even tougher to stand out
in HIgh School. It makes it easier if you can blend. My oldest son has
learned to do so. He has chosen to do so. He is able to converse about
subjects that he has no interest what-so-ever. He plays sports and does
Varsity in two of them. He knows he is a little different, he knows that we
love that about him. He basically recognizes his shortcomings as well as
his gifts. His ego is very much intact.
Fred,
It seems from his history and what you describe presently, your son does not sound ASD, but maybe what some consider a cousin disorder, SID? Maybe an OT evaluation would be an avenue to consider.
KathyK - What an awesome response!I'm planning on implementing all of these with my son!
Thanks!
Those are good suggestions KathyK - thanks! There's one thing that hit me upside the head tonight, ironically, that clued me in to the fact that he does converse with other kids - listen to them, actually. He started asking all kinds of religious questions, which is interesting, because we're not religious and have basically not given him any religious foundation. He was telling me about the mysteries of God, lol. I offered to sign him up for some bible classes (seriously, I'm not religious due to upbringing, but not averse to exposing him to it at all) -but, anyway, the point is, I guess he is having conversations with other kids at school, because this isn't the first time he's brought home something like this.
sunflowers, by not "buying trouble", the neuro, I think, meant don't go looking for a diagnosis for a kid who is functioning well and having no problems. She had the very common and sensible notion that yes, we all have quirks, but these quirks should only be considered a disorder if they are affecting your life in a negative way. She had similar suggestions to what you all offered - get him in team sports, etc.,
He loves running and racing and is very competetive, but there's no junior track teams down here, so i guess it's going to have to be baseball (I don't know the rules for soccer!).
Oh, ironically, he met a 10 year old spectrum kid at his sister's therapy session today and invited him over for a play date :) Kid was into video games, so they had lots to talk about. My son said that he also liked to draw (which my son also enjoys), but DW said he was drawing repetetive circles and gingerbreat men over and over and over (and his mother complaining that she's not allowed to throw any of them away, lol).