Testing for Aspergers

[Karenciavo]

Is there any reason to test for Aspergers? I've suspected my youngest Ethan is on the scale for a while now and I've had three people (former educators) say to me in the last year, "Have you ever had Ethan tested for Aspergers?" They all then go on to say that he seems to have an abundance of the "good" markers and not many of the bad. The "bad" markers are things like getting angry when we don't follow the daily schedule/ there is a sudden change in plans . He also does things like flap his arms when he is talking and excited, always running to get from point A to point B, etc. - annoying /distracting at times, but not "bad." All of these things, including the "bad" I parent like I parented my other two - loving, calm, but firm discipline with a dose of humor. I've made some adjustments as well, e.g. I give him a five minute warning before we begin something because it freaks him out to be pulled away from what he's doing. He's usually doing something - building an intricate Lego village, in the middle of reading, etc. He really never does nothing. I can think of some reasons *not* to get him tested, e.g. I don't want him labeled, I don't want it reported to the state like doctors reported his congenital heart defect - but are there any reasons to get him tested that I'm not aware of?

Thanks :001_smile:

[priscilla]

I think it depends on how he is functioning IMO. Is he able to carry on a conversation, look at you, show interest in different things, play with other kids, etc. My son had some signs of possible Asperger's such as some difficulties playing with others but no difficulty playing with his cousin who he knows well. He never was big in the melt down department, but did have occasional less than 30 second ones. He had trouble joining in with other kids at recess in preschool and other school settings. He used to flap his hands on occasion. He also would space out in school at times. He had trouble with eye contact, but not always. He would be like the little professor. All of these have resolved for the most part.

We did have him evaluated on the advice of teacher's. The doctor's said that he did not meet all of the criteria for AS. Later we had him evaluated again and this doctor felt he did meet the criteria even though he did not display all of the characteristics. He said it was very mild and really only recommended social skills. My dh and I decided to forgo the diagnosis since we saw continual improvements in ds. I did buy social skills DVDs from Model Me Kids and looked into social skills groups of which there were none. We also did some role modeling and every activity known to man since we are doing school at home;) My son never displayed aggressive traits or other really severe traits.

Some of son's quirkiness may be due to his giftedness. All in all, I am glad that we held off on a diagnosis since my son seems less and less quirky:) OTOH I would not have hesitated to get one if ds had displayed severe or moderate problems since a diagnosis can get you services which can be a huge benefit to kids. Also, sometimes it is good to get an objective opinion and if you do that does not mean you have to agree to a diagnosis. Plus I always agree with second opinions. I have also heard of some kids who received a diagnosis and treatment and then were able to lose the diagnosis.

I do worry that many kids are labelled so to speak prematurely since truly a diagnosis is a subjective opinion of a doctor. There are no objective tests to tell you if a child has a psychiatric diagnosis. OTOH a diagnosis can get you services. I was hesistant in my ds case since his symptoms were very mild and my dh and I worked with him and let time be on our side:) I think if services are needed and symptoms are more than mild, then a diagnosis and treatment are good things.

[Momto2Ns]

There is not a "test" for Aspergers. It is an evaluation and as the pp said, different doctors will evaluate differently. Normally a developmental psychiatrist or psychologist will do the testing.

As far as a reason to test... well it varies.
The points I see for it:
*A diagnosis can help if he ever needs accommodations for standardized testing. This is true all the way up to ACT/SAT level.

*It can also help him understand that challenges he faces are just that - challenges brought by Aspergers, not him being "bad", "stupid", "mean" or whatever. The fact is people label even if you don't:glare:. Having a correct label can sometime really help kids understand and keep their self-esteem.

*Getting more information can help you know best how to work with him and help him. At the same time, you may not need a label to help you find this help. :001_smile:

*Access to services and programs that you would not have otherwise. Some of these have been great for us. For example ds does a swim team for special needs kids. His coordination is just off enough he can't win against peers and gets frustrated losing all the time. The special needs team emphasizes sportsmanship, fitness and fun.

Downsides to a label:
*If your state has any requirements for special needs kids.

[sparrow]

There is not a "test" for Aspergers. It is an evaluation and as the pp said, different doctors will evaluate differently. Normally a developmental psychiatrist or psychologist will do the testing.

As far as a reason to test... well it varies.
The points I see for it:
*A diagnosis can help if he ever needs accommodations for standardized testing. This is true all the way up to ACT/SAT level.

*It can also help him understand that challenges he faces are just that - challenges brought by Aspergers, not him being "bad", "stupid", "mean" or whatever. The fact is people label even if you don't:glare:. Having a correct label can sometime really help kids understand and keep their self-esteem.

*Getting more information can help you know best how to work with him and help him. At the same time, you may not need a label to help you find this help. :001_smile:

*Access to services and programs that you would not have otherwise. Some of these have been great for us. For example ds does a swim team for special needs kids. His coordination is just off enough he can't win against peers and gets frustrated losing all the time. The special needs team emphasizes sportsmanship, fitness and fun.

Downsides to a label:
*If your state has any requirements for special needs kids.


:iagree: We recently decided to have ds evaluated and we're glad we did. Ds is 9 and realizes that he is different. The times where he has felt "stupid" can now be understood in terms of "your brain works differently. not worse, in any way. just different." and we have a psychologist's evaluation to back that up. I needed to hear it, too, since ds does not have the so called bad Aspie traits of lack of eye contact or lack of empathy (but he knocks the other Aspie traits out of the ballpark :)).

Our ds struggles with the social stuff most of all. Kids gravitate to him because he is a charismatic, good looking boy. Once he starts making up games and bossing everyone around, they just kind of drift away. By having him evaluated we now have services available to him, like pairing up with another HFA and attending art or music at the PS. I think this will be great for him.

I definitely wanted any LD diagnoses documented for ACT/SAT accommodations.

So, for us, so far, evaluation has been a plus.

[Karenciavo]

There is not a "test" for Aspergers. It is an evaluation and as the pp said, different doctors will evaluate differently. Normally a developmental psychiatrist or psychologist will do the testing.

Right, thank you, I understand there isn't a test. I was using testing in the same way you did here.

As far as a reason to test... well it varies.
The points I see for it:
*A diagnosis can help if he ever needs accommodations for standardized testing. This is true all the way up to ACT/SAT level.

*It can also help him understand that challenges he faces are just that - challenges brought by Aspergers, not him being "bad", "stupid", "mean" or whatever. The fact is people label even if you don't:glare:. Having a correct label can sometime really help kids understand and keep their self-esteem.

*Getting more information can help you know best how to work with him and help him. At the same time, you may not need a label to help you find this help. :001_smile:

*Access to services and programs that you would not have otherwise. Some of these have been great for us. For example ds does a swim team for special needs kids. His coordination is just off enough he can't win against peers and gets frustrated losing all the time. The special needs team emphasizes sportsmanship, fitness and fun.

Downsides to a label:
*If your state has any requirements for special needs kids.It seems as though all these except for your first and possibly your last points can be handled without an evaluation. Right now Ethan is advanced academically and does well on tests so I'm not sure at this point if the first matters. He is uncoordinated and doesn't do well in sports, but I think there are other ways we can handle that as well.

Thank you. :001_smile:

[Karenciavo]

There are some social quirks/concerns. He doesn't like it when kids don't follow the rules and that alienates him. Plus he's a "little professor" as well and other kids think it's weird when he goes on in depth about a topic or uses big words. He does make eye contact and loves to join in with groups although sometimes they reject him which gets my mama bear fur up I must admit. Rejection = he's always "it" while playing tag, etc.

Thanks Priscilla. :001_smile:

I think it depends on how he is functioning IMO. Is he able to carry on a conversation, look at you, show interest in different things, play with other kids, etc. My son had some signs of possible Asperger's such as some difficulties playing with others but no difficulty playing with his cousin who he knows well. He never was big in the melt down department, but did have occasional less than 30 second ones. He had trouble joining in with other kids at recess in preschool and other school settings. He used to flap his hands on occasion. He also would space out in school at times. He had trouble with eye contact, but not always. He would be like the little professor. All of these have resolved for the most part.

We did have him evaluated on the advice of teacher's. The doctor's said that he did not meet all of the criteria for AS. Later we had him evaluated again and this doctor felt he did meet the criteria even though he did not display all of the characteristics. He said it was very mild and really only recommended social skills. My dh and I decided to forgo the diagnosis since we saw continual improvements in ds. I did buy social skills DVDs from Model Me Kids and looked into social skills groups of which there were none. We also did some role modeling and every activity known to man since we are doing school at home;) My son never displayed aggressive traits or other really severe traits.

Some of son's quirkiness may be due to his giftedness. All in all, I am glad that we held off on a diagnosis since my son seems less and less quirky:) OTOH I would not have hesitated to get one if ds had displayed severe or moderate problems since a diagnosis can get you services which can be a huge benefit to kids. Also, sometimes it is good to get an objective opinion and if you do that does not mean you have to agree to a diagnosis. Plus I always agree with second opinions. I have also heard of some kids who received a diagnosis and treatment and then were able to lose the diagnosis.

I do worry that many kids are labelled so to speak prematurely since truly a diagnosis is a subjective opinion of a doctor. There are no objective tests to tell you if a child has a psychiatric diagnosis. OTOH a diagnosis can get you services. I was hesistant in my ds case since his symptoms were very mild and my dh and I worked with him and let time be on our side:) I think if services are needed and symptoms are more than mild, then a diagnosis and treatment are good things.

[Karenciavo]

Thank you Sparrow. Good food for thought.

We recently decided to have ds evaluated and we're glad we did. Ds is 9 and realizes that he is different. The times where he has felt "stupid" can now be understood in terms of "your brain works differently. not worse, in any way. just different." and we have a psychologist's evaluation to back that up. I needed to hear it, too, since ds does not have the so called bad Aspie traits of lack of eye contact or lack of empathy (but he knocks the other Aspie traits out of the ballpark :)).

Our ds struggles with the social stuff most of all. Kids gravitate to him because he is a charismatic, good looking boy. Once he starts making up games and bossing everyone around, they just kind of drift away. By having him evaluated we now have services available to him, like pairing up with another HFA and attending art or music at the PS. I think this will be great for him.

I definitely wanted any LD diagnoses documented for ACT/SAT accommodations.

So, for us, so far, evaluation has been a plus.

[Karenciavo]

If anyone has any books or web sites to recommend I would love to have your suggestions.

[Momto2Ns]

Karen,
One other thing I will mention... if this is your 7yo, the social world tends to get much harder for aspie's and all ASD kids when they hit middle school age. When my ds was 7 I thought we had it all handled. When he hit fifth grade, things changed. He was in ps at that time which made a big difference. Kids who had always been kind and friendly overall (even if he was sometimes set apart a little) suddenly became downright mean:001_huh:. I don't think a diagnosis is necessary at all, but it really helped my ds cope. He could cling to the fact it was autism not him they were picking on. Two years later, all is well and he has a great group of friends again. Through those rough times though, the diagnosis has really been a friend to us.

My ds was more severe in the beginning than yours though. We needed a lot of services and help (speech, OT, etc). If you don't want a label skip it. But remember that you are the only one that has to know he has it. Sharing it is still up to you even if you get it.

Blessings in whatever decision you make.

btw - I love your blog and your TOG schedule has really helped me as I researched Tapestry. Thanks!

[Karenciavo]

Karen,
One other thing I will mention... if this is your 7yo, the social world tends to get much harder for aspie's and all ASD kids when they hit middle school age. When my ds was 7 I thought we had it all handled. When he hit fifth grade, things changed. He was in ps at that time which made a big difference. Kids who had always been kind and friendly overall (even if he was sometimes set apart a little) suddenly became downright mean:001_huh:. I don't think a diagnosis is necessary at all, but it really helped my ds cope. He could cling to the fact it was autism not him they were picking on. Two years later, all is well and he has a great group of friends again. Through those rough times though, the diagnosis has really been a friend to us.
Someone else told be puberty was a tough time as well. I guess that is middle school age though.

If you don't want a label skip it. But remember that you are the only one that has to know he has it. Sharing it is still up to you even if you get it.
I was reminded of that this morning. I don't know why I didn't think of that myself. :tongue_smilie: The main reason why I'm anti-label is because I don't want well meaning people giving him a free pass on behavior that should be corrected.

Blessings in whatever decision you make.
btw - I love your blog and your TOG schedule has really helped me as I researched Tapestry. Thanks!

Thank you. :001_smile:

[Verity]

I read this post/responses with interest because I'm in a similar situation. My oldest son is undiagnosed "officially" but has many of the traits of HFA/Aspergers. The most glaring are the lack of coordination, little professor speech, and difficulty with peer/social groups. He also struggles alot with ADHD and I think has some visual-spatial issues.
He was evaluated at age 6 on the recommendation of his kindergarten teacher who was convinced that he had autism. At that point the dr said no to autism (though he agreed that his strengths and weaknesses mimiced autism) and yes to high level of ADHD. As he gets older some of the traits have become more obvious.
Like Karen I struggle with whether or not to have him officially diagnosed. One of the several reasons I pulled him out of public school was the lack of diagnosis, without which he couldn't qualify for an IEP and accomodations in the classroom. The teasing (started in third, continued to fourth) was getting really bad and affecting the way he felt about himself, his attitudes and personal habits.

I get concerned that a label might limit some of his future opportunities. For instance, he if wanted to join the military (I could see him sitting in front of a computer for the Air Force lol) would he be disqualified? I'm not saying that he will or should go that way but I'm not quite ready to limit him at this age. OTOH, I could see that having some accomodations for the ACT/SAT could be extremely valuable and useful. At this point since we are homeschooling I guess we will continue with the wait and see approach.

Luckily, we did find a social skills group that he qualified to join and really enjoyed. I'm hoping for a second round of that in the spring.

[LivingOutLove]

If anyone has any books or web sites to recommend I would love to have your suggestions.

Hi,

We just started Navigating the Social World, which is a social skills curriculum for kids with AS/HFA. You can check it out on Amazon.

HTH!

[KarenAnne]

I have found my daughter's diagnosis extremely helpful. For one thing, reading up on Asperger's afterwards, I kept running into issues I had noticed before but not known what to think or do about them. For instance, it turned out my child had physical difficulty focusing both eyes together and moving them. She couldn't process the speed and direction of things like kids running or balls being thrown in time to react. After six months of sports vision therapy she is by no means athletic, but at least she can play ball without being terrified of its speed or of being hit. After a year of OT, she learned to do things like ride a bike (at age nine), walk on stilts, and use a pogo stick; but the real benefits came when her improved balance transferred in some way to handwriting and general mental ability. I've seen the same thing happen when she started doing therapeutic horseback riding. She now rides in a regular program, but the practice in balance does something to the brains of these kids and lets them use their brains for other things once the whole physical issues have been made more automatic and natural.

I also second what many have said: middle school is very, very hard after your child may have seemed to improve so much and have a nearly normal life in upper elementary years. Even homeschooled kids sheltered from much of middle-school social brutality become much more aware of how different they are, and understanding why, that it's a matter of wiring and not something they "do wrong," can be helpful.

I have also found that people in general are very willing to keep an extra eye on my child in group situations if they know she has Asperger's specifically; just saying she is "different," or socially awkward, or needs help initiating social interactions, doesn't seem to do the trick as much as making it official has done.

By the way, my husband has also been diagnosed with Asperger's since our daughter went through the process. Growing up, he had no interventions or therapies, and everything from work socialization to narrow interests to a real problem with organization and an inability to interact with his own child have challenged all of us. You can of course get the therapies without having a formal diagnosis, but having a professional discuss with your child how his brain works, what his strengths and difficulties are, and becoming comfortable with that, are all huge pluses. If you read memoirs by adult Aspies they nearly always say when they finally were told or figured out their Asperger's Syndrome, they were so hugely, hugely relieved and wished they could have known much sooner.

[sparrow]

There are some social quirks/concerns. He doesn't like it when kids don't follow the rules and that alienates him. Plus he's a "little professor" as well and other kids think it's weird when he goes on in depth about a topic or uses big words. He does make eye contact and loves to join in with groups although sometimes they reject him which gets my mama bear fur up I must admit. Rejection = he's always "it" while playing tag, etc.

Oh, I totally get this. Ds is also "the enforcer". In his world, rules were made to be followed. He'll be happy to let anyone know that will listen when someone is not following the rules. That doesn't make for easy friendships, unfortunately :(. My mama bear fur is in a constant up state, I fear:glare:. As I said before, ds can be the pied piper, leading children over to play a game of his own making. Once the children leave, one by one, rolling their eyes at the convoluted attempt ds has made of explaining the complicated rules of "his game" my hackles are up. It's no one's fault. *I* can't understand the rules of his games, but I don't want them to hurt my sweet boy!

If anyone has any books or web sites to recommend I would love to have your suggestions.

Buy Tony Atwood's The Complete AS Guide (http://www.amazon.com/Complete-Guide-Aspergers-Syndrome/dp/1843106698/ref=sr_1_1?ie=UTF8&s=books&qid=1264044372&sr=8-1). Dh and I spent an evening reading passages to each other and passing the book back and forth. It's like Atwood had been living with our son. It also made me think about my son's strengths in a different way. He has an exceedingly noble and moral character. Atwood talks about these attributes and how they can be valuable in careers like criminal justice, working with animals, etc....though ds has his heart set on working for Lego:D.

I really liked this social skills website (http://www.btinternet.com/%7EROSALYN.LORD/ASD/SocialSkillCheckList.htm). Your post is a good reminder that I need to print this out.