Re: Not sure if my son is AS or not

August 7, 2006

Hi ,

I have to say from what you've written it does sound awfully like Asperger's

to me. You have to remember that it is a developmental difference, and it

sounds as if all the interventions he has had so far have helped him

progress well, so he will present differently to a child who has not had any

interventions at all. Just because he has developed though, does not mean he

has become 'normal', if he is ASD then he will always have the autistic way

of thinking, he will just become better at 'pretending to be normal'.

Meltdowns do not have to be like tantrums, crying or screaming count too.

It could be that the reason your son does not understand things sometimes is

because of the ASD literality (problems with semantics and pragmatics). You

do not say what he is like with empathy - knowing that another person's

thoughts and feelings are different to his own, but a tendency to ramble on

about things when others are clearly bored would tie in with that.

>> He understand non-verbal communication pretty well for the most part and

>> uses it himself, he just tends to ramble too much when he describes

>> something, sometimes gets out of order but then notices, backs up and

>> says it again differently (just like I do way too often) and usually

>> assumes you already know about the topic when he starts telling you his

>> story.<<

Non-verbal communication is things like facial expression, intonation and

gesture - both using and understanding.

>>I'm afraid of an Asperger's diagnosis, partly because I don't think it

>>will answer the question of why he doesn't put things together as quickly

>>as other kids and will in fact, make that issue less important when for me

>>and my son it is the most important issue. If we can resolve that then

>>he'll have less " reason " to get upset so easily and the emotional issue

>>will, I think cease to exist in a big way. I also am just because it is

>>Asperger's and not just a slight learning disability... it just sounds

>>more frightening.<<

Do not be frightened of it - it is not a death sentence! It is often no more

than a 'slight learning difficulty' (not even a disability), which the right

support in school will help him overcome. And it sounds as if you have a

very willing school.

in England

August 7, 2006

Hi ,

Thank you very much for your reply.

To answer some questions:

1. Empathy: Since preschool he has been described by teachers as one of the most empathetic and compassionate children they have ever met at his age. This is truly one of his most obvious gifts. He notices when people are upset and immediately goes to make them a card or just give them a hug. He asks if we can pray for people he hears are sick or sad and obviously cares about other people. He's never had to be prodded to show empathy (except when he's really mad and is sure he's right... but then he sounds a lot like his dad or me).

2. Non-verbal communication: he definitely seems to use and understand it (you should see the faces he makes, obviously intended for me, when his little sister is whining). He understands when I am giving him one of my looks, but lately his response has been a defiant "What?!" I think he understands perfectly "what" I'm looking at him about. He didn't seem to understand when he was younger, and that might just be age, I don't know, but he does know.

3. His rambling isn't much different from what I used to do (add so many details that my husband would just want to scream, we've managed to tell each other how we feel about our communication differences and I've modified my way of telling stories and he's modified his way of truly listening to me). My best friend and other women, especially, I know do it too. Is this Asperger's or being around talkative women too much? (I'm a stay-at-home-mom and have been since he was born.)

4. A slight learning difficulty I can handle. What I really want to know is what is causing the disconnect between understanding what he's learning right away, like most of his peers do, and his needing more time for it to sink in? Is that Asperger's? I think knowing he's on the spectrum or not is academic to me (except on a deep emotional level) at this point. What I really want to know is what is causing the disconnect and can we correct, and if so how so that he can stay up with his peers. I think that if he can perform at basically the same level, right away, not later when it finally sinks in, will alleviate much of his frustration (and alleviate much of the tears too).

Thanks again,

Re: Not sure if my son is AS or not

Hi ,I have to say from what you've written it does sound awfully like Asperger's to me. You have to remember that it is a developmental difference, and it sounds as if all the interventions he has had so far have helped him progress well, so he will present differently to a child who has not had any interventions at all. Just because he has developed though, does not mean he has become 'normal', if he is ASD then he will always have the autistic way of thinking, he will just become better at 'pretending to be normal'.Meltdowns do not have to be like tantrums, crying or screaming count too.It could be that the reason your son does not understand things sometimes is because of the ASD literality (problems with semantics and pragmatics). You do not say what he is like with empathy - knowing that another person's thoughts and feelings are different to his own, but a tendency to ramble on about things when others are clearly bored would tie in with that.>> He understand non-verbal communication pretty well for the most part and >> uses it himself, he just tends to ramble too much when he describes >> something, sometimes gets out of order but then notices, backs up and >> says it again differently (just like I do way too often) and usually >> assumes you already know about the topic when he starts telling you his >> story.<<Non-verbal communication is things like facial expression, intonation and gesture - both using and understanding.>>I'm afraid of an Asperger's diagnosis, partly because I don't think it >>will answer the question of why he doesn't put things together as quickly >>as other kids and will in fact, make that issue less important when for me >>and my son it is the most important issue. If we can resolve that then >>he'll have less "reason" to get upset so easily and the emotional issue >>will, I think cease to exist in a big way. I also am just because it is >>Asperger's and not just a slight learning disability... it just sounds >>more frightening.<<Do not be frightened of it - it is not a death sentence! It is often no more than a 'slight learning difficulty' (not even a disability), which the right support in school will help him overcome. And it sounds as if you have a very willing school. in England

August 7, 2006

Categorizing kids is very difficult - especially when they are high

functioning. There is no magical divisions within the autism

spectrum. The labels autism, PDD, aspergers, ADHD and possibly even

bi-polar and SID are not separate conditions but just a

classification of what symptoms are greatest issues. Some may

disagree but this is based on the latest research that I have read

and from observation as a person myself that would be classified as

aspergers with one low-functioning autistic son, one aspergers son, 2

NT kids and one with speech delay.

I often think of the autism spectrum like a cold. One person may

have sneezing and a runny nose while another might have a fever and

stuffy nose. They both have a cold yet their symptoms are

different. The severity can be different too. For one person it

might be a mild irritation while another will be flat-on-his-back

sick. It is still caused by a cold virus even though the level of

severity is different. Sometimes there is an attempt to classify a

cold such as a head cold or chest cold yet that really just described

what symptoms are greatest, not separate viruses.

The term aspergers and high-functioning autism are used synonomous by

some and others feel they are distinctly different. I have heard

some say with autism there is typical development then regression

while with aspergers, the development was always consistent. This

doesn't hold water when you consider kids that are severe at birth

are called having Kanner's Autism. I have heard others say austism

means there is a speech delay while with aspergers there is no

delay. One of the greatest authorities on aspergers is Tony Attwood

but even he has appearantly contradicted himself since someone on

this list said in a book he wrote, it says they are distinctly

different while someone said he gave a talk a few months ago where he

said the only different between aspergers and autism is how they are

spelled. To me, I really don't care. I call myself aspergers

because the symptoms I have seem to fit that label.

Over the years, I can't tell you how many time the " professionals "

will change labels on kids. Some will say the previous label was

wrong while others will admit that the label change is different

because of the amount of improvement the child has had. Just last

week I was listening to a talk by Dr. Wakefield where he was saying

as the autistic kids he works with improve, they tend to either

because more ADHD-like or more asperger-like (stating either the

attention & hyperactivity becomes more predominant or the social

deficits become more predominant issues). I think the emphasis on

labels is taking away from time and energy just getting to work

helping the child. No matter what label fits the child best, each

child is still an individual and sometimes a label can cloud that.

Not only that, as a child gets older, they often naturally have a

shift in areas of concern.

In some ways I can relate to your son and in some ways my oldest,

asperger son. In my opinion based on what you wrote, he does sound

aspergers but mild. It sounds like the therapy he has had and

maturity has been in his favor. This is not a death sentence by any

means and there are positives that go along with it.

You yourself said he has above average intellectual ability which is

fairly common. Since he learns differently, the way new information

is presented may be confusing to him which means it is not that he is

not understanding the concept being taught but the way it is taught.

For example, many on the spectrum can't quite understand something if

it is shown piece by piece. They need to see the whole first them

can tackle the pieces. In school, I remember they will have some

craft project and they would give us step 1, then step 2 etc. I

would feel like I was paralyzed because I didn't know what I was

shooting for. If however, the teacher showed a completed project

then showed us how to do each step, I would be eagerly working and

keeping up. When I was in high school, I tried to take driver's

training but just froze behind the wheel. A car was a mystery to

me. What did I do? I enrolled in auto mechanics, learned how all

the parts of the car worked and then I was ready to drive. The

process was longer but the end result is I not only knew how to drive

but how to do my own minor repairs. I have homeschooled my asperger

son from the beginning which has enabled me to tailor his teaching so

he could excel. He is starting high school next year and is doing

great. He is going to take some college-level courses in Engineering

which he will get dual college and high school credit for. I wonder

if the reason your son takes longer to get a concept is because he

didn't get it until the entire concept had been completely shown,

then he was able to put the pieces in place from the previous

instruction.

Both my son and I can cry at the drop of a hat. I find it very hard

to control my tears. Just thinking of something sad will turn it

on. Thankfully I am a woman so it is not as bad as a guy but I have

embarrassed myself too many times in front of a boss. My son has

always responded to frustration with tears. This last week, he has

responded to frustration with anger. Yesterday he was very angry and

for the first time, I was scared of my own safety (he is taller than

me). I could tell he was really trying hard not to express his anger

physically. After he calmed down, I told him I was scared of him and

that really hit him hard. He pointed out he had recently stopped

crying when frustrated but unfortunatly it was replaced with anger.

We need to figure out a way to deal with it. I too had an anger

problem and early on in my marriage, I hit my husband. I have

learned to deal with it but can't really put my finger on what

changed except that it was at the same time I eliminated MSG from my

diet.

I used to have difficulty with eye contact. I have gotten better but

I think it has been primarily due to practice. My mom instilled in

me that it was disrespectful to not look someone in the eye (nobody

knew I had a disability except the school early on tried to say I was

mentally retarded). I forced myself to make eye contact but because

I was concentrating on it so much, I didn't understand much of what

was said. I can talk so much easier on the phone since eye contact

is not necessary. I have gotten better at both looking and hearing

but if I think about it, it throws me off.

My son is very social and makes friends easy. The problem is keeping

the friends. Things will go well for a while then out of the blue,

he will say something odd that will make them back off. It might be

something insulting that he had no clue was insulting or might be his

intense desire for things to be done the right way. As a kid, I got

a reputation as a tattle-tale because if someone broke a rule, I

could not rest until it was corrected.

Just because your son is the shining star of the social skills group

doesn't mean he doesn't have problems with social skills. It just

means among the kids that are severe enough to be put in the social

skills group, he is the highest functioning. Count your blessings

though. My autistic son can't even be in a social skills group

because he is completely non-verbal.

The issues that made me question if my son was aspergers were similar

to what you describe in your son. For years I had been so frustrated

how he will talk about something without enough information as to

what the subject is. When I ask questions, he will get very angry

feeling like he is always misunderstood. Sometimes as a family, we

will be deep in a conversation about something and he will all of a

sudden he would say something such as, " that was really funny what he

did " . Who is he? What does it have to do with the current

conversation? His mind was wandered off and he assumed ours wandered

with him. He also will say a sentence and the volume will go down at

the end. I will ask him to say the last word but he cannot. He has

to say the entire sentence all over again.

The other issue is rambling. Both my son and I do this. We have

areas of deep interest and feel compelled to talk about it. I think

it is a combination of our strong desire to talk about it and not

getting the social cues that the listener is not really interested.

This gets a bit easier as one gets older. Part of it is learning to

recognize the cues and having the self-control to stop. Part of it

is due to the fact that as we get older, we chose those we associate

with by common areas of interest. I am actually rambling right now

online about my area of interest - autism, but now it is more

functional because I can use this interest to educate others.

In the past, I had many more sensory issues than I do now. Some went

away as I got older and some I can now relate directly to diet.

Many with aspergers are very intellegent. Some like my son have a

photographic memory. Many of the greatest inventions are thought to

be from those with aspergers. Spielberg is one of the most

famous men that has publicly admitted having aspergers. Many believe

Bill Gates is too. My son is 14 and after 2 sessions learning about

how computers are put together, he can build a computer from

scratch. He is also gifted artistically. He could watch a cartoon

and a month later, draw a scene from that cartoon with incredible

detail. I'm talking knowing right where the pocket is, where each

wrinkle is, the colors etc. It is absolutely amazing. Early on

teaching him has been a struggle and I questioned his future. Now, I

am reaping the rewards and seeing his future is quite bright.

>

> I'm a frequent lurker and very infrequent poster. I especially

don't post because I joined to find out more about AS from a parent's

perspective and to see if it looked like my son fit in with the other

kids described. I don't think I see him, but I'm not sure. He is 8

and this fall will have his 3 year IEP evaluation at school. We

originally got an IEP because he was diagnosed with Sensory

Integration Dysfunction (SID) just before kindergarten started. At

that time, the developmental ped we were seeing suggested autism,

asperger's, ADHD (which he definitely is not) and other things that

have not held. He has aged out of the early childhood developmental

delay label the school was using and they are proposing using the

autistic impaired label starting this year but will decide after the

eval (I joined this group after I heard that). I'm fine with that if

it gives him services he needs (OT especially) but it raised

questions in my mind again as to whether he is or is not on the

spectrum. My only two concerns with him though are (1) he cries very

easily when he's frustrated and 3rd grade is going to be very hard,

he needs to learn better coping skills and we've been working very

hard on that this summer. He's doing extremely well but I'm still

worried about him. (2) He's average to above average intellectual

ability but it seems to take him longer to understand new concepts

than it does other children. Once he understands he masters it

quickly but it takes him more time so he gets left behind sometimes

and of course, gets frustrated. He did 2.5 years of private OT (and

gets it at school 1x/week during the school year) and graduated from

private therapy because his sensory issues no longer interfere with

his daily functioning at all. He is a totally different child than he

was 3 years ago, when he was first diagnosed. His OT said when he

came in she would have thought autism but now would not say so at

all. (And I apologize, I'm still not clear on the differences between

HFA and Asperger's so I'm thinking of them interchangeably for now.)

>

> We are now doing vision therapy for visual processing issues. I

know that visual processing issues can cause problems in

comprehension and am hoping this is the key to helping him understand

new concepts more quickly. So far, it hasn't unlocked anything and

we've been doing it for 6 months but he has made great progress in

reading (his tracking ability, among other skills was terrible and is

much better now) and sports too.

>

> Anyway, with the possibility of the AI label, I asked my son's ped

if we should look more closely at that from a medical standpoint and,

since it has come up before, she suggested we go back to the

developmental ped for an autism evaluation. (We originally went to

the behavioral ped 3 years ago because of our son's very strong

emotions and reactions interfering with his ability to cope with

preschool and were worried that kindergarten would be difficult and

after testing revealed very delayed fine motor skills and slightly

delayed gross motor, we were referred for PT and OT testing and both

immediately diagnosed SID.) I especially wanted a referral back to

the behavioral ped to find out if there was anything else I should be

looking at for the cognitive processing issues and for help with

teaching him to regulate his reactions to frustration.

>

> We were told a team would evaluate our son and that the team would

consist of the behavioral ped, a ped neurologist and a ped

psychiatrist. After not hearing from them regarding an appointment

after a month (and several other phone calls) I called again

yesterday and was told by the person taking the call that she had my

son's file right there and that there was a note in it that the team

(without ever having seen him, except the behavioral ped who saw him

last in Oct. 2003) had decided to refer him directly to a

psychiatrist specializing in Asperger's. I called my ped to ask her

about this but she was out of the office and will call me next week.

She is fantastic and I'm hoping she'll either tell me to just take

him in or especially that she'll call the behavioral ped to see what

exactly prompted that because the behavioral ped had no new

information about my son except the referral paperwork. I'm hoping

she'll convince her to do a team approach eval on him instead.

>

> I'm really upset because I want him to be evaluated by the most

appropriate people to make sure we don't get " nope, not AS, let me

send you back to the behavioral ped for a more complete eval. " Just

in case the ped says yes, go ahead with this, I called the

psychiatrist especially because it takes so darn long to get

appointments. They did a 10 minute interview over the phone which

included questions like, " Does your son make eye contact " (didn't

used to but does great now), " Does your son make friends easily,

enjoy playing with kids his age, etc. " (yes and his social skills

are, for the most part, age appropriate though he does take part in a

social skills program at school, he's also been described as the

shining star of the group), " Does your son have any tics or behaviors

that he needs to repeat over and over? " (nope, never), " Does your son

get upset when things deviate from their routine? " (used to but goes

with the flow most of the time now), " Does your son have frequent

meltdowns? " (Yes he used to, he still cries easily, that is his way

of coping with frustration and we've been working with him to find

more appropriate and useful ways to deal with it and he's responding

well to our interventions). That was the ONLY question I answered

that would, in my mind say, yes this child needs to be seen in an

Asperger's clinic. At school he also receives speech although is

rarely pulled out for it and it is done within the social skills

group because the SLP takes part in it. She is mostly concerned about

his pragmatic language. His conversation and especially narrative

skills are not great but I'm not sure they're terribly out of bounds

for his age either since I hear NT kids talk like him too. He

understand non-verbal communication pretty well for the most part and

uses it himself, he just tends to ramble too much when he describes

something, sometimes gets out of order but then notices, backs up and

says it again differently (just like I do way too often) and usually

assumes you already know about the topic when he starts telling you

his story. Those are the biggest issues I can see anyway. He goes to

the resource room for one hour per day for help with understanding

new concepts and completing work assigned in class. He definitely

needs this help. He has had a parapro since kindergarten and they

thought he was ready to go on his own this year but had so many

meltdowns toward the middle/end of the year, as the work got much

harder (and the teacher more stressed because she was behind in

getting through everything) that they are giving him a parapro again

this year (it is a shared aide). Sometimes he needs help because he's

stuck understanding what to do or how to do it and other times he's

just flying right along.

>

> At this point, I don't know what to think except that the

behavioral ped had a bias and, without reevaluating him herself is

making assumptions. 3 years ago he was severely sensory seeking in

some ways and avoiding in others. He was a mess! He didn't have a

sense of his own body in space and frequently violated other

people's " space " because he didn't know he was so close, he couldn't

make eye contact but does in a very " normal " way now, he had a

terrible time making friends because he came on so strong but now he

is much more aware of other people and their needs and is also a MUCH

calmer person himself and has lots of friends. He melted down very

frequently because of sensory overloads and now it is mostly because

of disappointment or frustration learning something new and not being

able to get it quickly enough (and then it is just some tears and

very rarely an actual meltdown). He also desperately needed visual

schedules at school but now does fine without one and, as I said,

when things have to be out of order he's fine with it.

>

> I'm afraid of an Asperger's diagnosis, partly because I don't think

it will answer the question of why he doesn't put things together as

quickly as other kids and will in fact, make that issue less

important when for me and my son it is the most important issue. If

we can resolve that then he'll have less " reason " to get upset so

easily and the emotional issue will, I think cease to exist in a big

way. I also am just because it is Asperger's and not just a slight

learning disability... it just sounds more frightening. I'm writing

this because I'm hoping some parents or professionals reading can

give me some more insight. Does he sound like an Asperger's child?

Can anyone suggest anything else that might be going on? I'm

concerned the doctors are going to let me down (for the first time

believe it or not) and I want to have a back up plan if they do.

>

> Thank you very much for reading all of this. As I'm writing it is

late and I'm emotional so I hope I included enough information

without putting in too much. Thanks for any help you can offer.

>

August 8, 2006

,

Thank you so much for your insights into my questions and concerns. I'm not going to try and comment on all of it, but much of it made sense and is giving me more to think about. The idea of learning in whole chunks instead of in pieces is very interesting. I have an educational background (certified in secondary English and Spanish, have more experience in preschool through 1st grade though and professionally was a instructional systems designer for businesses instead of going into school teaching) and am trying to figure out how you could teach things like math, for one thing that comes to mind because he's having difficulty there, in larger chunks. That said, I'm really not sure how math units and lessons in elementary school are structured in the first place. I think what I'm really after is how can I explain this to his teacher this year, assuming it would help him. I can see easily how it relates to process-driven lessons or tasks like a craft but was quite surprised and intrigued when you said you needed to understand how the car worked before being able to drive it.

It is interesting too that your son replaced tears with anger. I've long understood that if you take something away, especially a habit, you have to replace it with something so when I correct his behavior I try to remember to tell him what he can do instead. At school they did a social story to help him learn what he could do instead of cry when work got hard (it gave 3 options: ask for help, take a deep breath, take a break). That helped him but a positive reinforcement program I'm working on at home is especially making that stick better. We'll see what happens when school starts again though.

Social issues: so far, I haven't noticed anything with him like you've seen. His friendships seem to stay well but he's quite young so that could change. His teachers were actually thinking about taking him out of the social skills group since many of the things they work on he's already mastered but we decided is not a bad thing (he often does gain something from the activities), he enjoys it, feels good about himself there since he's often helping other kids and it is a good vehicle for the SLP to work with him on pragmatics (it is facilitated by the SLP, OT and school psychologist). Will keep my eye out for unexpected shifts in his friendships though to see if there's a problem because of social issues. He was very "rule-oriented" too but seems to have relaxed about it this year (and was even rather obnoxious about breaking rules for a while but is back to being respectful but without a lot of the overboard black & white rules so maybe his temporary rule-breaking obnoxiousness was good). I don't know if he notices cues to stop rambling... I will work with him on being aware of them. Is this something NT people just learn or did someone teach us at some point? I don't remember. My friend is not AS but does not notice the "uh huhs" and body shifts trying to break in on a long, very detailed story (she's aware you don't know all the details and players so she makes sure you do whether you need to or not! :-)

About intelligence... that's a strange one for me. He tests as average to above average (or did 3 years ago, he's due to be reevaluated in September). Verbal skills were above, most others were average. I have a 4.5 year old daughter (NT though she has some mild sensory issues) who is very likely quite gifted. Her preschool teacher wants me to get her tested as soon as the school district will allow it because she's likely to be bored in regular classrooms (without some kind of extra challenge or opportunities to take interesting lessons further). My son is definitely not like her. He seems much more average to me but the processing problems bother me because I know without a doubt he has the capabilities (because eventually he gets it) and I want him to be able to get it without having to work so hard to get there (a little hard work never hurt anyone but a lot, especially while peers are not struggling, does hurt his self-image). I don't care if he's "gifted" academically, I just don't want him to have to struggle so much. One gift he has though that his sister does not have in nearly the abundance he has is empathy. Teachers started pointing out to me in preschool that he is much more empathetic than children his age (at any age so far) normally are. When someone is sad he's right there with a hug or word of encouragement or he makes them a card or suggests we pray for them. He's never been prodded or "directly taught" to do this. He's spiritual and naturally so caring that when I think of his future, despite any learning disabilities or different abilities, I know it will be filled with love, especially as he creates it in his interactions with others and I can see him enjoying himself in many different professions too. This comforts me anyway and I try to point out to him what a beautiful gift he has that so many more people need when he is frustrated with his own inability to understand a concept. It doesn't seem to help so I try to say it at other completely neutral times too so he understands how important it is and not just in contrast to what he wishes he had more of too.

I don't think I really care what the label is but I want to help him in whatever way is best for him because school is so frustrating sometimes. Asperger's still sounds more "intimidating" like there's something "wrong" with him that I can't fix (I think that is the bottom line with the labels, I want it to be something I can take care of or help him move beyond) but your descriptions make it less important that I do. Perhaps the learning disability is ours in the form of a teaching disability... I'll definitely need to look more closely at that... it sounds even more challenging but at least it is on my end to take care of it instead of forcing him to do things differently than he is possibly able.

I think I'm rambling now... like I said, you've given me a lot to think about, as your posts so often do. Thank you for sharing your thoughts and especially your experiences.

Re: Not sure if my son is AS or not

Categorizing kids is very difficult - especially when they are high functioning. There is no magical divisions within the autism spectrum. The labels autism, PDD, aspergers, ADHD and possibly even bi-polar and SID are not separate conditions but just a classification of what symptoms are greatest issues. Some may disagree but this is based on the latest research that I have read and from observation as a person myself that would be classified as aspergers with one low-functioning autistic son, one aspergers son, 2 NT kids and one with speech delay. I often think of the autism spectrum like a cold. One person may have sneezing and a runny nose while another might have a fever and stuffy nose. They both have a cold yet their symptoms are different. The severity can be different too. For one person it might be a mild irritation while another will be flat-on-his-back sick. It is still caused by a cold virus even though the level of severity is different. Sometimes there is an attempt to classify a cold such as a head cold or chest cold yet that really just described what symptoms are greatest, not separate viruses.The term aspergers and high-functioning autism are used synonomous by some and others feel they are distinctly different. I have heard some say with autism there is typical development then regression while with aspergers, the development was always consistent. This doesn't hold water when you consider kids that are severe at birth are called having Kanner's Autism. I have heard others say austism means there is a speech delay while with aspergers there is no delay. One of the greatest authorities on aspergers is Tony Attwood but even he has appearantly contradicted himself since someone on this list said in a book he wrote, it says they are distinctly different while someone said he gave a talk a few months ago where he said the only different between aspergers and autism is how they are spelled. To me, I really don't care. I call myself aspergers because the symptoms I have seem to fit that label.Over the years, I can't tell you how many time the "professionals" will change labels on kids. Some will say the previous label was wrong while others will admit that the label change is different because of the amount of improvement the child has had. Just last week I was listening to a talk by Dr. Wakefield where he was saying as the autistic kids he works with improve, they tend to either because more ADHD-like or more asperger-like (stating either the attention & hyperactivity becomes more predominant or the social deficits become more predominant issues). I think the emphasis on labels is taking away from time and energy just getting to work helping the child. No matter what label fits the child best, each child is still an individual and sometimes a label can cloud that. Not only that, as a child gets older, they often naturally have a shift in areas of concern.In some ways I can relate to your son and in some ways my oldest, asperger son. In my opinion based on what you wrote, he does sound aspergers but mild. It sounds like the therapy he has had and maturity has been in his favor. This is not a death sentence by any means and there are positives that go along with it. You yourself said he has above average intellectual ability which is fairly common. Since he learns differently, the way new information is presented may be confusing to him which means it is not that he is not understanding the concept being taught but the way it is taught. For example, many on the spectrum can't quite understand something if it is shown piece by piece. They need to see the whole first them can tackle the pieces. In school, I remember they will have some craft project and they would give us step 1, then step 2 etc. I would feel like I was paralyzed because I didn't know what I was shooting for. If however, the teacher showed a completed project then showed us how to do each step, I would be eagerly working and keeping up. When I was in high school, I tried to take driver's training but just froze behind the wheel. A car was a mystery to me. What did I do? I enrolled in auto mechanics, learned how all the parts of the car worked and then I was ready to drive. The process was longer but the end result is I not only knew how to drive but how to do my own minor repairs. I have homeschooled my asperger son from the beginning which has enabled me to tailor his teaching so he could excel. He is starting high school next year and is doing great. He is going to take some college-level courses in Engineering which he will get dual college and high school credit for. I wonder if the reason your son takes longer to get a concept is because he didn't get it until the entire concept had been completely shown, then he was able to put the pieces in place from the previous instruction.Both my son and I can cry at the drop of a hat. I find it very hard to control my tears. Just thinking of something sad will turn it on. Thankfully I am a woman so it is not as bad as a guy but I have embarrassed myself too many times in front of a boss. My son has always responded to frustration with tears. This last week, he has responded to frustration with anger. Yesterday he was very angry and for the first time, I was scared of my own safety (he is taller than me). I could tell he was really trying hard not to express his anger physically. After he calmed down, I told him I was scared of him and that really hit him hard. He pointed out he had recently stopped crying when frustrated but unfortunatly it was replaced with anger. We need to figure out a way to deal with it. I too had an anger problem and early on in my marriage, I hit my husband. I have learned to deal with it but can't really put my finger on what changed except that it was at the same time I eliminated MSG from my diet.I used to have difficulty with eye contact. I have gotten better but I think it has been primarily due to practice. My mom instilled in me that it was disrespectful to not look someone in the eye (nobody knew I had a disability except the school early on tried to say I was mentally retarded). I forced myself to make eye contact but because I was concentrating on it so much, I didn't understand much of what was said. I can talk so much easier on the phone since eye contact is not necessary. I have gotten better at both looking and hearing but if I think about it, it throws me off. My son is very social and makes friends easy. The problem is keeping the friends. Things will go well for a while then out of the blue, he will say something odd that will make them back off. It might be something insulting that he had no clue was insulting or might be his intense desire for things to be done the right way. As a kid, I got a reputation as a tattle-tale because if someone broke a rule, I could not rest until it was corrected. Just because your son is the shining star of the social skills group doesn't mean he doesn't have problems with social skills. It just means among the kids that are severe enough to be put in the social skills group, he is the highest functioning. Count your blessings though. My autistic son can't even be in a social skills group because he is completely non-verbal.The issues that made me question if my son was aspergers were similar to what you describe in your son. For years I had been so frustrated how he will talk about something without enough information as to what the subject is. When I ask questions, he will get very angry feeling like he is always misunderstood. Sometimes as a family, we will be deep in a conversation about something and he will all of a sudden he would say something such as, "that was really funny what he did". Who is he? What does it have to do with the current conversation? His mind was wandered off and he assumed ours wandered with him. He also will say a sentence and the volume will go down at the end. I will ask him to say the last word but he cannot. He has to say the entire sentence all over again.The other issue is rambling. Both my son and I do this. We have areas of deep interest and feel compelled to talk about it. I think it is a combination of our strong desire to talk about it and not getting the social cues that the listener is not really interested. This gets a bit easier as one gets older. Part of it is learning to recognize the cues and having the self-control to stop. Part of it is due to the fact that as we get older, we chose those we associate with by common areas of interest. I am actually rambling right now online about my area of interest - autism, but now it is more functional because I can use this interest to educate others.In the past, I had many more sensory issues than I do now. Some went away as I got older and some I can now relate directly to diet.Many with aspergers are very intellegent. Some like my son have a photographic memory. Many of the greatest inventions are thought to be from those with aspergers. Spielberg is one of the most famous men that has publicly admitted having aspergers. Many believe Bill Gates is too. My son is 14 and after 2 sessions learning about how computers are put together, he can build a computer from scratch. He is also gifted artistically. He could watch a cartoon and a month later, draw a scene from that cartoon with incredible detail. I'm talking knowing right where the pocket is, where each wrinkle is, the colors etc. It is absolutely amazing. Early on teaching him has been a struggle and I questioned his future. Now, I am reaping the rewards and seeing his future is quite bright.>> I'm a frequent lurker and very infrequent poster. I especially don't post because I joined to find out more about AS from a parent's perspective and to see if it looked like my son fit in with the other kids described. I don't think I see him, but I'm not sure. He is 8 and this fall will have his 3 year IEP evaluation at school. We originally got an IEP because he was diagnosed with Sensory Integration Dysfunction (SID) just before kindergarten started. At that time, the developmental ped we were seeing suggested autism, asperger's, ADHD (which he definitely is not) and other things that have not held. He has aged out of the early childhood developmental delay label the school was using and they are proposing using the autistic impaired label starting this year but will decide after the eval (I joined this group after I heard that). I'm fine with that if it gives him services he needs (OT especially) but it raised questions in my mind again as to whether he is or is not on the spectrum. My only two concerns with him though are (1) he cries very easily when he's frustrated and 3rd grade is going to be very hard, he needs to learn better coping skills and we've been working very hard on that this summer. He's doing extremely well but I'm still worried about him. (2) He's average to above average intellectual ability but it seems to take him longer to understand new concepts than it does other children. Once he understands he masters it quickly but it takes him more time so he gets left behind sometimes and of course, gets frustrated. He did 2.5 years of private OT (and gets it at school 1x/week during the school year) and graduated from private therapy because his sensory issues no longer interfere with his daily functioning at all. He is a totally different child than he was 3 years ago, when he was first diagnosed. His OT said when he came in she would have thought autism but now would not say so at all. (And I apologize, I'm still not clear on the differences between HFA and Asperger's so I'm thinking of them interchangeably for now.)> > We are now doing vision therapy for visual processing issues. I know that visual processing issues can cause problems in comprehension and am hoping this is the key to helping him understand new concepts more quickly. So far, it hasn't unlocked anything and we've been doing it for 6 months but he has made great progress in reading (his tracking ability, among other skills was terrible and is much better now) and sports too.> > Anyway, with the possibility of the AI label, I asked my son's ped if we should look more closely at that from a medical standpoint and, since it has come up before, she suggested we go back to the developmental ped for an autism evaluation. (We originally went to the behavioral ped 3 years ago because of our son's very strong emotions and reactions interfering with his ability to cope with preschool and were worried that kindergarten would be difficult and after testing revealed very delayed fine motor skills and slightly delayed gross motor, we were referred for PT and OT testing and both immediately diagnosed SID.) I especially wanted a referral back to the behavioral ped to find out if there was anything else I should be looking at for the cognitive processing issues and for help with teaching him to regulate his reactions to frustration.> > We were told a team would evaluate our son and that the team would consist of the behavioral ped, a ped neurologist and a ped psychiatrist. After not hearing from them regarding an appointment after a month (and several other phone calls) I called again yesterday and was told by the person taking the call that she had my son's file right there and that there was a note in it that the team (without ever having seen him, except the behavioral ped who saw him last in Oct. 2003) had decided to refer him directly to a psychiatrist specializing in Asperger's. I called my ped to ask her about this but she was out of the office and will call me next week. She is fantastic and I'm hoping she'll either tell me to just take him in or especially that she'll call the behavioral ped to see what exactly prompted that because the behavioral ped had no new information about my son except the referral paperwork. I'm hoping she'll convince her to do a team approach eval on him instead. > > I'm really upset because I want him to be evaluated by the most appropriate people to make sure we don't get "nope, not AS, let me send you back to the behavioral ped for a more complete eval." Just in case the ped says yes, go ahead with this, I called the psychiatrist especially because it takes so darn long to get appointments. They did a 10 minute interview over the phone which included questions like, "Does your son make eye contact" (didn't used to but does great now), "Does your son make friends easily, enjoy playing with kids his age, etc." (yes and his social skills are, for the most part, age appropriate though he does take part in a social skills program at school, he's also been described as the shining star of the group), "Does your son have any tics or behaviors that he needs to repeat over and over?" (nope, never), "Does your son get upset when things deviate from their routine?" (used to but goes with the flow most of the time now), "Does your son have frequent meltdowns?" (Yes he used to, he still cries easily, that is his way of coping with frustration and we've been working with him to find more appropriate and useful ways to deal with it and he's responding well to our interventions). That was the ONLY question I answered that would, in my mind say, yes this child needs to be seen in an Asperger's clinic. At school he also receives speech although is rarely pulled out for it and it is done within the social skills group because the SLP takes part in it. She is mostly concerned about his pragmatic language. His conversation and especially narrative skills are not great but I'm not sure they're terribly out of bounds for his age either since I hear NT kids talk like him too. He understand non-verbal communication pretty well for the most part and uses it himself, he just tends to ramble too much when he describes something, sometimes gets out of order but then notices, backs up and says it again differently (just like I do way too often) and usually assumes you already know about the topic when he starts telling you his story. Those are the biggest issues I can see anyway. He goes to the resource room for one hour per day for help with understanding new concepts and completing work assigned in class. He definitely needs this help. He has had a parapro since kindergarten and they thought he was ready to go on his own this year but had so many meltdowns toward the middle/end of the year, as the work got much harder (and the teacher more stressed because she was behind in getting through everything) that they are giving him a parapro again this year (it is a shared aide). Sometimes he needs help because he's stuck understanding what to do or how to do it and other times he's just flying right along.> > At this point, I don't know what to think except that the behavioral ped had a bias and, without reevaluating him herself is making assumptions. 3 years ago he was severely sensory seeking in some ways and avoiding in others. He was a mess! He didn't have a sense of his own body in space and frequently violated other people's "space" because he didn't know he was so close, he couldn't make eye contact but does in a very "normal" way now, he had a terrible time making friends because he came on so strong but now he is much more aware of other people and their needs and is also a MUCH calmer person himself and has lots of friends. He melted down very frequently because of sensory overloads and now it is mostly because of disappointment or frustration learning something new and not being able to get it quickly enough (and then it is just some tears and very rarely an actual meltdown). He also desperately needed visual schedules at school but now does fine without one and, as I said, when things have to be out of order he's fine with it.> > I'm afraid of an Asperger's diagnosis, partly because I don't think it will answer the question of why he doesn't put things together as quickly as other kids and will in fact, make that issue less important when for me and my son it is the most important issue. If we can resolve that then he'll have less "reason" to get upset so easily and the emotional issue will, I think cease to exist in a big way. I also am just because it is Asperger's and not just a slight learning disability... it just sounds more frightening. I'm writing this because I'm hoping some parents or professionals reading can give me some more insight. Does he sound like an Asperger's child? Can anyone suggest anything else that might be going on? I'm concerned the doctors are going to let me down (for the first time believe it or not) and I want to have a back up plan if they do. > > Thank you very much for reading all of this. As I'm writing it is late and I'm emotional so I hope I included enough information without putting in too much. Thanks for any help you can offer.> > >

August 8, 2006

Good day nancy-

I am amother of a high functioning autistic 5yr old boy. He has

full verbal communications, really isn't tactile defensive, is

fairly versital in our schedule (as long as I am in the equasion) He

will be entering a regular kindergarten this fall w/special ed 4

days a week in the afternoon. For the most part people look at him

and say he doesn't look or act as they expect an autistic child to

be. He still has melt downs and doesn't do much w/o mom. EXCEPT

school. He loves school and willingly goes. Getting on the bus isn't

always easy and he is an escape artist. He has a mean streak that we

have worked hard to tone down by him coming to me and my listening

to him when he is frustrated.

I have a great friend who has a 8 ye old ( I believe) She had

him diagnosed w/aspergers 2 years ago after struggling w/the system

and going thru several doctors. She found her success at getting him

diagnosed thru childrens hospital. She says that one of the top

doctors in the field is in childrens hospital in seattle.

She is currently weaning out some of his meds and changing

others. I got to see him this weekend after 4 months of not seeing

him and he is a different kid now.

If you are interested I can ask her if you can have her email

address and chat w/her.

Jen

-- In Autism and Aspergers Treatment , " nancydewolf "

<nancydewolf@...> wrote:

>

> I'm a frequent lurker and very infrequent poster. I especially

don't post because I joined to find out more about AS from a

parent's perspective and to see if it looked like my son fit in with

the other kids described. I don't think I see him, but I'm not sure.

He is 8 and this fall will have his 3 year IEP evaluation at school.

We originally got an IEP because he was diagnosed with Sensory