new here; not sure if Asperger's is the right diagnosis

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Hi, everyone. My 8 y.o. son was just diagnosed with mild Asperger's last week, but I'm not sure if it fits the bill and I thought you all might be able to provide me with some perspective. DS is an anxious kid. He is sooooooo much like my husband in both the great ways and the more challenging ways. Theyare both really smart, creative, and loving. They can also be quite absent-minded and their anxiety can be problematic. DS was not an early talker or walker, but he just squeaked in under the wire for staying in the "normal" ranges. Our history has been that when we get really worried about something, like his expressive language skills when he was a toddler, we start to make appointments and then he has a developmental leap. He struggled with sensory issues in preschool, but not to any extreme degree, just enough to make things challenging and mean that we heard from his teachers a lot. He is not sensory-avoiding or sensory-seeking across the board. He isn't a daredevil by any stretch of the imagination, he is more on the timid side when it comes to physical things, but he used to have issues with respecting others' personal space, so I guess that is somewhat of an indication of sensory-seeking behavior. That has improved a lot over the last few years. He doesn't lean on other kids all the time when they are sitting on the floor like he did when he was younger, though he does have a hard time sitting still, especially in a group, for long periods of time. I'm not sure that alone is really extreme, but again, it can be problematic in a school setting. He dislikes loud noises and they make him ucomfortable. He also has a habit (or tic?) of making little noises (e.g., he makes kind of a little humming noise while he eats and at other quiet times in class) and talking in silly voices. The noises could be self-stimming, but I'm not sure where the line is between habit and stimming. The developmental pediatrician who examined him last week indicated that he has mild hypotonia (low muscle tone), but everything else on his physical exam was normal.

Most of his issues now seem to be in the realm of anxiety and emotional regulation. He sometimes has extreme overreactions to things that don't go the way he wanted them to go or the way he planned. This is not every time, but seems to happen more often when he is anxious or stressed. He is in a class of 25 kids that is very boy-heavy and I think that he sometimes has sensory overload problems in the classroom that stress him out and lead him to over-react. He also has a hard time letting go of things that make him afraid and moving on even if someone tries to explain to him rationally why he doesn't need to be afraid. Fear/ anxiety is not rational, so that approach just doesn't cut it when he is worked up. Over the last few years, he has identified a few triggers that he talks about when he is anxious. For several months, it has been tornadoes even though we live in an area where they are infrequent. I think that he brings up tornadoes when he is feeling anxious about all sorts of things that he can't pinpoint. A tornado is something that he can identify as a cause of worry, so he uses that to explain his anxiety, if that makes sense.

Other things that are concerns: he is not great about making eye contact, particularly with strangers or when he is stressed. There are plenty of times when he does make eye contact too, but when meeting with a doctor he didn't know, he didn't make a lot of eye contact, so this is something the doctor noticed. He sometimes gets lost in his thoughts (like my husband!) and will bring up something that may seem like a non sequitur until you understand his thought process. I mentioned the low muscle tone already. I think it was worse when he was younger, but he is still a somewhat clumsy runner. He can ride a two-wheeler and while he isn't as coordinated or athletic as some of his peers, he participates in regular activities without appearing any different than perhaps a bit non-athletic. His fine motor skills are very good.

We took him to a psychologist when he was in pre-K and at the beginning on K for a while, and while it was fine, I'm not sure how much he gained from it. He also did about 6 or 8 weeks of OT when he was in pre-K and I think that was good. The PE teachers in his school now do a lot of things that they call brain exercises, and I think those have been helpful for him too. Since we have had quite a bit of communication from school about behavior/ emotional regulation this fall, I talked with his pediatrician. I also scheduled an appointment with a developmental pediatrician who saw DS two years ago. Two years ago, the dev. pediatrician said there was nothing to diagnose. He said that DS was a great, somewhat quirky kid who would likely be challenging to raise. At our appointment last week, we did intake with another doctor who seemed to be leaning toward ADD/ ADHD. Then she left the room and talked to the main doctor. He came in and did a physical exam and repeated some of the things he heard from the first doctor. Then he pronounced that DS has Asperger's. I was kind of stunned because I wasn't expecting this. I know DS has anxiety issues, but I didn't think he was on the spectrum. I didn't ask a ton of questions because I was absorbing it all. Now that I have had a few days to think it over, do some more reading, and read the dev. pediaitrician's report to our regular ped., I am really questioning the diagnosis. Several things that we told the doctor who did the intake seem to be amplified in the dev. pediatrician's report. For example, fears that we said DS had a couple of years ago are all listed as current even though he is no longer afraid of these things. We talked with the doctors about friendships and I said that DS had lots of pals but not a lot of close friends. I think perhaps I was under-selling the friendships DS does have. There are two girls he has been close with since Kindergarten and other friends who have been important to him at various times. He seems to be well-liked by his classmates. Another mom just told me last week how much her daughter loves DS and wanted to sit next to him when they changed seating assignments in the class recently. He gets invited to lots of birthday parties and other kids come to his too. We don't do a lot of playdates because my husband and I both work, so DS stays at the after school program every day. He usually has one activity going at a time on weekends (e.g., golf, tennis, basketball) and that is also our family time. We have a 5 y.o. DD too, who doesn't seem to have the same issues as DS. DS does develop deep interests that are not always the same as his peers, but not to the point of being obsessive. For example, he loves holiday decorations and talks about them a lot from Halloween through Christmas every year. While it may be a bit unusual and he gets more excited about Christmas inflatable decorations than some of the "cooler" kids, is it THAT weird?

The dev. pediatrician didn't ask us to complete any instruments and did not have any information from DS's school when he made his diagnosis. (The school had not returned the questionnaire we asked them to complete.) From what I am reading, it is very difficult to diagnose Asperger's, and I am wondering if the dev. ped. thought he was helping us by giving us a label for DS's problems because the label might help us get more consistent support from school than we have been getting. I'm OK with the label if it fits, but I'm just not convinced of it yet.

The dev. ped. prescribed Fluvox for anxiety, and I think we are going to start trying it when DS is on his holiday break so that we can watch for side effects. We are also looking into cognitive behavioral therapy and are on a wait list at a clinic that has been recommended to us. The dev. ped. said he would have the OT he works with contact us too, so we will likely do a course of OT for DS as well. We have talked with school (before this diagnosis) about trying to get DS in a social skills gorup, and we hope that will start in January though I am not holding my breath since the school is slow to act (though quick to contact us about problems.)

If you have stuck with me this long, THANK YOU! What do you think? Does it sound like Asperger's is the right diagnosis or is DS simply an anxious, somewhat shy, and non-athletic kid who sometimes marches to the beat of his own drummer?

the thing that strikes me is that he generally gives eye contact to folks he knows, but was too shy to with the new doctor. i'd ask the doc if this weighed heavily into his decision. if not, then i'd go along with the treatment for a while to see if it helps.

You say that your son has friends that like him at school but how does he play with these friends? Does he play in an age appropriate manner? Does he seek out sharing of interests or enjoyment with them? How is he at the birthday parties he attends? Does he play/speak to all of the kids in an age appropriate manner? If you have been seeking a social skills group that leads me to believe he has some issues in this area.

It sounds like your son was diagnosed by using the following two criteria:

(1) marked impairment in the use of multiple nonverbal behaviors, such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

(2) failure to develop peer relationships appropriate to developmental level

It does seem that he qualifies for (1) because of the lack of eye contact (it doesn't hve to be all the time, it just has to be marked) How is he with other non verbal gesturing? Can he read facial expressions/body language?

If you find that the above 2 criteria don't adequately or accurately describe your son, you may need to make a new appointment with the Dev Ped and ask how she qualified him in each section of the diagnostic criteria. He could have another issue such as NVLD, anxiety disorder or even ADD that presents somewhat like how you have mentioned. How is he academically?

Thank you both for your responses. We're supposed to meet with the developmental pediatrician again in three months. I'm not sure if I will wait until then to talk with him or if I might try to reach him sooner. I get the impression that he is a head honcho and his time is scarce. The first time we met with him, it took at least four months to get an appointment. My husband and I both work at the university where he is in the academic medical center, and one of our newest benefits is priority scheduling with university physicians. It only took a few weeks to get the most recent appointment. I wonder if the reason another doctor did all the intake was because we got sandwiched into his busy schedule. I'm just not sure.

We're waiting to hear from the OT and plan to start that. We also hope to start CBT soon and will give the anxiety meds a try. We think that all of this can only help DS whether or not Asperger's is the diagnosis.

DS does engage in age-appropriate play with his friends. He is interested in things they do and vice versa. It's real play, not just parallel play. He talks with them about their interests and his own, which often but not always overlap. Most of his friends aren't quite as interested in holiday inflatables as him and he isn't as interested in some of the video games some of them like. I think I have a hard time seeing how typical he is sometimes because I have worried about him for so long. Other parents who are my friends have reassured me that he seems just fine to them when I have expressed concerns about him. A mom of one of his classmates told me last week that all the kids in the class love DS, and another mom told me that her DD wants to have a sleepover for her birthday and invite one boy, my DS. He was the first person on her list. When I visit school or attend a party where I get to watch lots of his peers, he doesn't seem that different than them. He sometimes seems a little silly or perhaps a bit less mature, but not to an extreme degree. For example, he and his sister still blow me kisses and sign "I love you" out the window to me and DH when they get on the schoolbus. I noticed recently than another second grader on his bus has started to make fun, though DS hasn't seen it. This other boy usually sits in the row behind DS. The other kid is a bit of a "tough guy" and DS is the opposite. He still loves to snuggle up and is not embarassed about hugging and kissing me in front of his friends. Our interest in getting him to practice social skills may be misguided. I guess I hoped that it would help him better understand social norms and what sort of reactions are appropriate in different situations, but maybe that's not the point. I think he has also had a habit of acting silly and trying to be a class clown to get attention when he feels like he isn't getting enough. As much as his goofiness can be endearing, it can also be annoying when it is not an appropriate time for it.

We really have seen him make great strides over the last few years. I think that when I hear about his problems at school, I tend to worry more than might be necessary. It's hard not to do so when you know your kid is a little different than many of his peers and you aren't there when some of these things happen to see the context. For what it's worth, the school hasn't jumped to help him. Our discussions with them have been about influencing his behavior and helping him to regulate his emotions. I know they are not all experts in development and they have limited resources that are mainly reserved for kids who need more support than DS. That has made me and DH concerned that DS will fall through the cracks. He is at grade level academically but we think he could be doing even better if he could get past some of his behavioral/ emotional problems. My biggest worry is that his self-esteem will be damaged if he feels like he is in trouble too much or feels like he just doesn't fit in somehow.

Edited to add a reponse to one of your questions: He is good with reading facial expressions and non-verbal gestures. The dev. pediatrician even noted in his report that when I got tears in my eyes while we were talking, Ds came over and stood beside me and put his arms on my shoulders.

His own gestures and facial expressions are sometimes exaggerated, especially if he is acting silly or if he is upset.

It is really difficult, obviously, to assess using information in a few posts, but I will tell you that if you had known my son at age 8, you would NOT have thought he could be on the spectrum. He is a very social and engaging child, highly affectionate, and was part of a fast group of friends all through elementary school. He also was and still is very good at reading ME, my movements, expressions and moods.

And yet I have no doubts at this point in time that the label was correct.

As other kids developed and matured, it became more clear that certain skills just weren't there at the same levels in him.

Still, I believe in mommy instinct, and if it doesn't feel right to you, you are right to ask .... just, I want to make sure you are asking for the right reasons, and with the right understanding of what AS is and how it exhibits.

Many of our kids ARE social and DO make eye contact; those are only potential external indicators of what is, when it comes down to it, a difference in internal brain wiring. And looking inside at that internal brain wiring - not so easy.

Did they do a componentized IQ test on your child? This was done on my son, and it was fascinating, because one of the things that is seen in most AS kids is a wide spread of gifts and burdens right there in the IQ components: the scores don't usually spread that way with "normal" brain wiring, and it indicates the combination overdeveloped/underdeveloped brain wiring that seems to be, in my experience, the true hallmark of and ASD.

Anxiety is a common side effect to ASD, and also a common co-morbid (it can be either). So are sensory issues. Have you looked into sensory issues much? I see you mentioned loud noises being an issue; that would be a sensory issue. Another common co-morbid is the hypotonia and is, actually, what drove my son's assessment (he had trouble learning to write, it was literally painful, and I can write books on how we got him through in this area).

How is his pragmatic speech? The ability to exchange in age appropriate conversation, giving and taking turns, keeping his turn succinct, knowing the right way to convey his meaning effectively, etc?

The doctors could be doing a bit of "when A, B and C are there, then it would be unusual for D not to also be."

For now, keep reading. Get everything you can. And remember that labels are only worth what they get for you. If the wrong label gets you the right services and the right understanding, then maybe it isn't so wrong after all. One thing a label never will be: a summary of who your child is nor of who he can be.

Good luck.

Thanks, DW_a_mom. Interesting to know about your son.

They didn't do *any* tests on my son, which is another reason for my uneasiness with a diagnosis. It seems to have been made simply on the basis of (1) what I told the doctor who did the intake, which seems to be amplified and in some cases, misconstrued, in the dev. ped.'s report, (2) the dev. ped's observations that included a "mild clumsy gait" and this language: "[DS's name] was in good spirits and was cooperative with the exam. He appeared slightly anxious but dealt with the stress of the office visit well and gradually became more at ease. He was engaged with me and talkative. He mostly did not look me in the eye when he talked to me but looked past me. He shared openly about some of his fears. He often punctuated his speech with hand motions and he had a stereotypic little posture with his hands that he struck when referring to himself as getting "freaked out." In the office setting these were mild. At one point when his mother became a little teary-eyed, {DS's name} noticed and walked over to stand beside her... didn't really say anything but stood by and put his hands on her shoulders."

The "freaked out" language and posture comes from home. DH and I have both used the term often and that's where DS learned it. DH also has a habit of gesturing with his hands a lot and I think what DS does is similar. Maybe they both have Asperger's! I do think the anxiety is something that runs in DH's family. DH is dealing with it right now and his late father was similar. Now that I think about it, his mom often looks past people when she is talking to them, but we always joked that it's because she was embroidering the stories she tells to make them more interesting. Maybe that's not what she is doing at all!

If you really want to ease your concerns, get a full psychological evaluation from a recommended psychologist including the ADOS, an IQ test, an achievement test, an interview with possible inventories for your son, inventories for you to fill out and inventories for the school to fill out.

On a second note. He sounds soooooo much like my DS. He is 10 (11 in Jan) and is just now getting a diagnosis. I preferred to deal with his "quirkiness" without the diagnosis for a long time. The gap at age 8 is not very wide and its hard to see the differences and easier make concessions for differences. At almost 11 and in 5th grade, the differences in social abilities for our DS are glaring. My DS has been in social skills classes since 2nd grade and he knows all the answers, but still cannot consistently apply the skills. The "friends" who overlooked or were not even aware of his "quirks" at age 8 refuse to play with him at age 10. The demands for social interaction, cooperation, subtle reading of gestures, word play, and nonverbal rules of behavior are too much. So my DS plays well with the 7 and 8 year old boys living down the block, but has no friends his age. The diagnosis difficulties for us were, DS has great imaginative play, good eye contact (except when anxious), no specific interest, few to no stims or repetitive movements (although he's a stickler for routines and rules), and can give all the appropriate social interaction answers (because of all the social skills classes). Anxiety is the prime problem at school for our DS and his meltdowns have been escalating at school. They finally recommended a special education evaluation to keep him from ending up at the alternative school for so many referrals (class disruptions due to meltdowns).

Maybe your son is not Aspergers. Maybe his is NVLD, or PDD-NOS, or just "quirky." I hope you find what you need to get the best help for your son.

Thanks, Eureka-C. I guess there is no "typical" for Asperger's, huh? DS very well could have it, but it's the fact that the diagnosis seemed to come without lots of evidence and it so nuanced that throws me off. The replies here are helpful because no one has dismissed my concerns or said that I am in denial about an obvious problem. We'll go ahead and work on the "symptoms" and see what results. I guess time is what will really tell whether or not DS has Asperger's or not.

Thanks again to everyone who has replied so far. I do appreciate it.

Diagnoses can change over time. I think the important thing is not to worry about the specific label so much as to be glad that you are doing things to help. The therapist he sees will tailor what they focus on to his personality rather than worrying a lot about the label he is given. (OT, SLP do their own sets of evaluations for strengths and weaknesses.) My DD's main issue is emotional regulation. Occupational Therapy has been amazing for her. You can also tell them that your main focus is emotional communication/regulation rather than social skills.

Also, being evaluated is also a step toward getting him some accommodations at school and some more understanding about his behavior issues there. I think most useful part of getting my daughter labeled was realizing that she needed some extra help and that her behaviors weren't all willful. It also pointed me in the direction of some great parenting books I hadn't considered. "Normal" parenting books don't have ideas like deep pressure and visual schedules, for example. Check out some books like "Quirky Yes, Hopeless No" for some positive views of Asperger's/NVLD and the like. Asperger's or not, you'll be getting some new ideas to try that might work great for him.

Another note is that my DD's extreme behaviors that were alarming to a regular pediatrician were taken in stride by a developmental pediatrician (for example, aggression and panic attacks are very common in kids with autism), so I felt more open to discussing some of the nastier problems we had and wasn't judged as a bad parent.

Maybe because he is so much like your husband and you believe that your husband is "typical" that it is difficult for you to think that your son could have Asperger's. It may be that they both do. Also this is not such a terrible thing especially if it is "mild" as you say. Also it sounds like he is responding well to learning and his sensory issues are not too bad. There are various levels of Aspergers just as there are classic autism. Like my son, there is no question that he has Aspergers (same with me), he actually scored only two points away from being diagnosed with classic Autism but his gigantic vocabulary kind of puts him over the line. He was diagnosed at age 6 which, three years ago, was young for a child to be diagnosed with Asperger's. My son is also one of those touchy feely types which I kind of had a problem with at first because I tend to be more like my 6 year old daughter who has classic Autism, more tactile sensitive. For some reason this did not bother me when they were infants, I even carried them around in slings constantly and loved breastfeeding, my babies were literally attached to me LOL. I have gotten used to it now though but we did go thorough the inappropriate touching and thinking its funny phase, glad thats over with! He is also more gentle with me now because he knows that I am sick, I have a nasty auto immune disorder and my bones are very fragile and I am in a lot of pain. So he jumps on Daddy....he and my daughter have a game called attack the Daddy....Poor Daddy!
Both my kids like to be hugged tightly and they like weighted blankets and animals. My daughter does not like to be touched in certain places like the insides of her arms and her face. I am the same way which is why I avoid the dentist at all costs....someone in my mouth and that close to my face is a nightmare!
We are all unique....I know some people hate this but Im going to pull out the old saying "When you've met one person with autism, then you have met one person with autism". I think it is the mistake many people make, they see another child who may be autistic or have Asperger's....maybe even on TV and think "My child does not act like that".....but that is not YOUR child!