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Joined: Apr 2010
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She has friends and school insist she is doing fine socially. But I am increasingly convinced that she's doing fine in superficial / shallow situations and is lagging in complex preteen girl social awareness.
She's been very thoroughly schooled by us, and her schools, on appropriate behavior and has learned this mostly very well, but increasingly it's clear that there are subtleties that she doesn't get. There are behaviors and small incidents everyday where we correct her (and she often seems puzzled), but her 5 yr old sister would not need to be told. Girls with AS are extremely hard to identify because they try SO hard socially, but don't quite get it. They usually don't have the profile of meltdowns and other assertive behaviors that boys with AS often have that make it obvious that something is up. They can sometimes seem a little like they're drifting; afraid to say the wrong thing, following along but not in the mix somehow. Are you seeking evaluation? You'll need a practitioner (neuropsych or developmental pediatrician) who specializes in autism and has seen lots of girls. A useful item I forgot to mention: the website and parent forum at MAAP / OASIS: http://www.aspergersyndrome.org/ . It has a list of resources by state. DeeDee
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All very good questions, and I'm not offended. While writing all that I've written today, I've been aware that I probably am coming off as someone who is not wanting to accept the AS diagnosis. I wouldn't say that. The impression I got was more that you want something really clear cut and you are frustrated you aren't getting it. I totally get the appeal of that, it just may not be reality. The line between PG and PG+AS can be really fuzzy. It may truly be a situation where only time can tell. To me it doesn't sound like pushing for a very firm "he's got it or he doesn't" is really going to accomplish a lot right now. I'm wondering if there is a possibility of letting go of the diagnosis question for a while and instead focusing specifically on what may be challenging your son on a given day. It may be that you are more open and comfortable to seeing and coping with that stuff if it doesn't feel like everything you notice is a check in the "he's got it" category. I'm not sure what to say about the evidence I would need to see to feel better about this diagnosis. The psych used the example of a midpoint and ds possibly being at say #49 (PG only) or possibly at #51 (AS and PG). This person didn't appear to be certain as to where to place ds, on or off the spectrum, though 'on' was what he chose in the end. The one behavior that was used that technically qualified my ds as having AS didn't seem, to us, to fit. Perhaps the psych was trying to be gentle and we misunderstood the statements made to us. One of the things I dislike most in doctors is if they act like they are certain when they aren't. So, as frustrating as it may be when you want a firm answer, I guess I would appreciate the honest discussion of how close your son appears to the line. I'm also thinking while a lot of instruments and measures are used, at the end of the day some of this is really about the gut feeling that there is something there that needs attention. In the case where it is truly on the line, it may make sense to lean toward thinking there may be a concern because that keeps it on the table for further treatment and evaluations. If it is so close, I'm not sure it makes sense to rule it out just yet. You make a good point here. There are clearly a few boys in his class who have something going on, but ds seems to be able to interact with all children, and is accepted by the more popular kids in the group. I'll observe him more closely next week. More popular kids are often more popular because they have good social skills and are able to deal with a wide variety of kids. One good thing about homeschooling is that it can be like an extended family where kids are accepted for all their quirks. I would look more to new situations to get a handle how he's doing.
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One of the things I dislike most in doctors is if they act like they are certain when they aren't. So, as frustrating as it may be when you want a firm answer, I guess I would appreciate the honest discussion of how close your son appears to the line. I'm also thinking while a lot of instruments and measures are used, at the end of the day some of this is really about the gut feeling that there is something there that needs attention. Some people have also identified a "broad autism phenotype"-- that there are people who have enough traits to seem unusual, but not enough to get diagnosed as autistic. This often includes the siblings or other family members of people diagnosed as on the autism spectrum. There really is a big borderline area. P2P's advice to look at particular issues that need addressing is sound. That's what you'd be doing with a firm diagnosis anyway. What the diagnosis gets you is potentially more professional help in addressing them; only you can decide if that's what you need. DeeDee
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Some people have also identified a "broad autism phenotype"-- that there are people who have enough traits to seem unusual, but not enough to get diagnosed as autistic. This often includes the siblings or other family members of people diagnosed as on the autism spectrum. There really is a big borderline area. I'll tell that to my wife. She recently decided to diagnose me with Aspberger's disorder.
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I'll tell that to my wife.
She recently decided to diagnose me with Aspberger's disorder. I took the online Aspergers test with DW. She scored around 40 and I scored around 150. She read through the traits and said, "That's you!" Now she calls be PIAB. Pain in the A** Burger!
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Some people have also identified a "broad autism phenotype"-- that there are people who have enough traits to seem unusual, but not enough to get diagnosed as autistic. This often includes the siblings or other family members of people diagnosed as on the autism spectrum. There really is a big borderline area. My DH had a hard time with my DD's diagnosis, his response to me at the time, (being the class clown that he is), "it's just your genes".  There are times my DD seems neurotypical, and times when it's blatantly obvious she is not, sometimes she's just so much like me it's scary.
EPGY OE Volunteer Group Leader
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I probably fit the phenotype and I think my own mother and some of her siblings do too...
Last edited by MumOfThree; 10/07/11 06:01 AM.
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One looks around the gene pool a bit, sighs, accepts it, and moves along...
DeeDee
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I'll tell that to my wife.
She recently decided to diagnose me with Aspberger's disorder. I took the online Aspergers test with DW. She scored around 40 and I scored around 150. She read through the traits and said, "That's you!" Now she calls be PIAB. Pain in the A** Burger! I found some online tests. They say that I'm most likely not Aspie. Maybe it's because I can't actually remember numbers or strings of digits and don't care if people randomly distract me. Maybe I'm answering the tests wrong. Who knows? I'm more oblivious to general reality, social or physical, than anything else. I'm going with ADD-inattentive over Aspie here.
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You will probably never ever know whether you child is truly on the spectrum or not. When it's somewhat vague (I am not hearing about dramatic flapping and rocking and being tuned out) then there is just not going to be a definitive diagnosis one way or the other, that you don't have doubts about.
You can go to ten experts and ask ten teachers for comments and do more testing. But at the end of that you may go to the 11th and they'll disagree. What percent of experts need to agree for it to be valid?
Austism spectrum is not a mystery that some particular expert has magic insight into if only one could find them. It's a catch all of ever-shifting boundaries that includes a myriad of environmentally and genetically caused disabilities, that happen to have a common feature of social difficulty. It's like depression in it's variety, except medication helps an even smaller percent.
At a recent family gathering there was talk over where the kids in the family wanted to go to college. One kid named a college that it's unlikely he could get into. My dad says, "Hah! You'll never get in to X". Everyone cringed. This however does not make him on the spectrum. It makes him a person who has said something insensitive.
At the same time if social skills training or sensitivity training at an early age would have made my dad's life a little easier then a austism spectrum diagnosis would have been good for him. If teachers would have been nicer to him after he said something thoughtless about their curriculum, or if my mom would have had more understanding when he neglected to compliment a dress when she asked how she looked, then it would have been a good diagnosis.
On the other hand knowing his diagnosis he might have decided against teaching, and he was by all accounts an excellent teacher. My mom might have thought that someone on the spectrum wasn't marriage material.
With iffy symptoms it's not the school's job or one psychologist's job to make a diagnosis, it is more in the realm of best-choice decisions parents make for their children. Only a parent truly sees the lifetime ahead and all the pros and cons. If you are worried that a diagnosis will be hard in the future or too defining or that it represents only a short time period, then don't accept it. When symptoms are iffy then there may be better ways to spend effort than in psychologists' offices.
Polly
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