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#31 of 45 Old 05-03-2011, 06:27 PM - Thread Starter
 
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Well, we met with the Pediatrician today and we are arranging a meeting at the school to discuss what they can put in place to decrease anxiety/social stress. The Ped thinks we can do this without formal disclosure of diagnosis, with the focus primarily on explaining the relevant concerns (e.g. anxiety about rough play, difficulty knowing when to take things literally, sensitive to being bumped, etc.), but she wants the whole school team there. The school is aware of the Psychologist's assessment (since we had the teacher fill out forms), and they know that he has missed a lot of school time for "appointments", so as soon as my DH spoke with the Principal about arranging the meeting she said "is this about his diagnosis?". DH carefully answered without really answering. Obviously we will have to decide how we will address the diagnosis piece as it will likely come up at the meeting and we will really be on the spot with the whole team there. I am thinking that we might request that there be no diagnosis recorded on official school documentation as there is some disagreement amongst involved professionals about diagnosis at this point, but disclose the diagnoses that were given by the Psychologist for their unofficial information if we feel we need to give some weight to the need for the school to take the requests seriously. It is so hard to know how that will go over though.

 

In the meantime, DS will be seeing a counsellor tomorrow, and we are waiting for other services to be arranged through the mental health agency. I am also trying to arrange a private speech-language assessment to get a better understanding of his language and social/pragmatic skills, but no one is even calling me back, which is frustrating. If things get worse instead of better again in the future (historically fall has been really rough) we will probably push for another professional assessment (whether Psychologist or Psychiatrist). Right now DS is generally managing ok behaviorally at home, but he has actually been showing more signs of anxiety at home.

 

Thanks for all the support!

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#32 of 45 Old 05-04-2011, 01:02 PM
 
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I think that might be enough for the school to go on for now.  Our DS1 has a somewhat ambiguous diagnosis at the moment (not so much over disagreement as everyone trying to see where the best fit is with some inconsistencies) but the school has been able to do a lot with a functional assessment as to what his strengths, needs and deficits are.  A long as they know what the difficulties are and can come up with a plan to work through them, the official name of the diagnosis can wait until later when there's some consensus.


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#33 of 45 Old 05-04-2011, 01:53 PM
 
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Originally Posted by mysweetboys View Post

 If things get worse instead of better again in the future (historically fall has been really rough) we will probably push for another professional assessment (whether Psychologist or Psychiatrist). Right now DS is generally managing ok behaviorally at home, but he has actually been showing more signs of anxiety at home.

 

Thanks for all the support!



Good luck with your meeting!

It is so interesting your mentioning fall because this has been our experience, too - I wonder do you have any explanation for this actually involving the season (weather, light, deficiencies, less outside play, more indoor stimulation etc) or just the new classroom environment fall always brings?

 


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#34 of 45 Old 05-05-2011, 06:26 PM - Thread Starter
 
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Thanks to both of you for your replies.

 

Re: fall being worse...I am not entirely sure why. Initially we thought there must be seasonal allergies as both spring and fall were far worse both in terms of sleep and behavior. However, allergy testing was negative, and last spring was actually quite good in terms of both behavior and sleep. More recently, we think that the seasonal pattern has been primarily related to stressors/anxiety. So of course fall has increased stressors with start of school (and for the last 3 years there have been significant changes each fall). Two years ago in the spring there were a lot of stressors (his school was closing and moving to another site so there was a huge disruption to the regular schedule as classroom supplies were being packed up, and in addition there were end of year trips and concerts etc for both school and Montessori where he attended part time). Three years ago in the spring was the first major behavioral change though, and we have no knowledge of any stressor at that point, so that theory doesn't entirely make sense. Winters here should be the worst season in terms of outdoor time, artificial light, etc.

 

DS is quite atypical in that, when he is going through a good phase behaviorally (which may be several months in a row) he's actually extra-well behaved - extra thoughtful and helpful, always trying to do the right thing. Always a bit rigid, and always with some sensory sensitivities, but generally an easy child to parent. Then when he's going through a rough stage (which also often lasts several months) he's absolutely miserable to be around almost constantly - irritable and on edge, exploding and going into a rage sometimes without an identifiable trigger or over something really minor. Then there are some in-between times (like now) where he has some periods where he seems to be emotionally labile and argumentative, and has occasional explosions, and you wonder what is coming next. I really can't make sense of the changes. All I know is that (contrary to what the Psychiatrist seems to think) I cannot find any link to our parenting approach or any changes within our home. The only (somewhat tenuous) link I can find is stressors that are change related (not knowing what to expect) or social related (anxieties related to violent play and talk at school, etc.).

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#35 of 45 Old 05-06-2011, 02:39 PM
 
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That's interesting what you were saying about the behavioral changes.  We have a very similar pattern, with the difficult behavior being more frequent when getting used to anything new (the start of a school year, sport program, first time with a new social group, etc.)  I always figured that was the cause of the fall problems.  I guess we were lucky that the professionals who worked with our son actually had concerns about the "good behavior", because they could see the rigidity and the difficulties with adjusting to a more informal style with peers.  The "difficult" behavior is really a flipside of the same coin because the rigidity, perfectionism and somewhat adult-like behavior is not a good blend with typical pre-teen interactions.  When it irritates peers but he can't see what unspoken social rule he broke, or when their (appropriate for age) behavior seems to break a rule (because he doesn't get that the playground and after school rules are different than the classroom expectation), he blows up. Fortunately it's just with the mouth and he's never been physical about anger, but we've had a lot of trouble with increased ticks when he feels this way.  It's too bad the psychiatrist is seeing the inconsistency as being about your parenting.  Most people I've met with a child with a formal or suspected diagnosis of Asperger's for their child seem to have a lot of inconsistency in behavior between home and school and depending on stressors.

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#36 of 45 Old 05-08-2011, 02:42 PM
 
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I think it's really smart of you to trust your gut regarding the accuracy of the diagnosis.  The developmental peds we've seen aren't comfortable diagnosing Asperger's that young.  Our experience was similar to yours.  My son went to pre-k and kindergarten in the public school (he's been homeschooled since first grade--love it!), and he had an IEP.  At that time, he had a "tentative" PDD-NOS diagnosis (with SPD and anxiety disorder NOS).  He had explosive tantrums at home, but was well-behaved at school.  However, that didn't mean school was a happy place for him.  He was miserable and so anxious that he cried before bed many nights because he was worried about school the next day.  His teachers loved him.  It was hard for them to imagine him having any "disorder".  His special ed teacher thought he was gifted and that that was the cause of his social discomfort at school.

 

Near the end of kindergarten he started self-harming at school to deal with stress.  He bit his hand, rubbed carpet burns on his hands, or punched bruises on his shins.  It's how he dealt with his feelings to keep from acting out and getting in trouble and being embarrassed in front of other kids.  (He's very afraid of public embarrassment.)  He's also a rule follower.  And he reacts incredulously when kids don't follow the rules.  That's one of the main reasons he was mainstreamed midway through kindergarten.  (The other kids in his special class were more impaired behaviorally.)  He liked the regular class, but the noise and chaos were still really stressful.  He asked to be homeschooled, and we started homeschooling at the beginning of 1st grade.

 

We had an in-depth reevaluation (by the same psychologist/developmental pediatrician team) when my son was 7.  And based on that, and how much progress he made between 5-7, PDD-NOS was ruled out!  So we'd been operating under the assumption that our son had autism for two years!  I was like you in that I didn't feel that enough of the criteria were met on a consistent basis.  His diagnoses are now nonverbal learning disability, SPD, a few LDS, and OCD.  And it's the right fit. 

 

I don't have anything to add as far as advice about disclosure, but I wanted to give you kudos for trusting your own judgement regarding diagnosis.


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#37 of 45 Old 05-09-2011, 09:17 AM
 
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That's interesting what you were saying about the behavioral changes.  We have a very similar pattern, with the difficult behavior being more frequent when getting used to anything new (the start of a school year, sport program, first time with a new social group, etc.)  I always figured that was the cause of the fall problems.  I guess we were lucky that the professionals who worked with our son actually had concerns about the "good behavior", because they could see the rigidity and the difficulties with adjusting to a more informal style with peers.  The "difficult" behavior is really a flipside of the same coin because the rigidity, perfectionism and somewhat adult-like behavior is not a good blend with typical pre-teen interactions.  When it irritates peers but he can't see what unspoken social rule he broke, or when their (appropriate for age) behavior seems to break a rule (because he doesn't get that the playground and after school rules are different than the classroom expectation), he blows up. Fortunately it's just with the mouth and he's never been physical about anger, but we've had a lot of trouble with increased ticks when he feels this way.  It's too bad the psychiatrist is seeing the inconsistency as being about your parenting.  Most people I've met with a child with a formal or suspected diagnosis of Asperger's for their child seem to have a lot of inconsistency in behavior between home and school and depending on stressors.


This was a really helpful insight for me.  We're experiencing some of this when it comes to time spent with other pre-teen boys (or older kids in Scouts).  For example, many 5th, 6th, 7th, etc graders cuss, and my son reacts to this.  If they say bad words or make inappropriate comments (like say balls or call each other douche bags), he thinks they are jerks.  As a mom, I kind of agree--BUT, I also know that it's pretty typical at this age.  These boys are showing off and trying to sound tough.  They're doing it because their friends are doing it.

 

When it comes to rule-oriented kids, what's the best approach to take in order to balance good behavior with getting along with peers?  My husband and I just told our son that some kids say bad words, and that it's not his job to police them.  But he can choose who he does and doesn't want to hang around.  It's counter-intuitive, but we've had to say that kids can cuss and call each other names and still be generally good kids.  Is that weird?  redface.gif


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#38 of 45 Old 10-21-2012, 10:22 AM
 
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Asperger Syndrome can be diagnosed at 18 months.  Most children are diagnosed between the ages of 21 months and 3 years of age.  Early intervention has been proven by research to be beneficial to those who are in the autistic spectrum, especially with those children with communication deficits, transition and socialization issues.

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#39 of 45 Old 10-21-2012, 10:40 AM
 
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Asperger Syndrome can be diagnosed at 18 months.  Most children are diagnosed between the ages of 21 months and 3 years of age.  Early intervention has been proven by research to be beneficial to those who are in the autistic spectrum, especially with those children with communication deficits, transition and socialization issues.

 



I don't buy this. Do you have a reference?


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#40 of 45 Old 10-21-2012, 03:32 PM
 
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Asperger Syndrome can be diagnosed at 18 months.  Most children are diagnosed between the ages of 21 months and 3 years of age.  Early intervention has been proven by research to be beneficial to those who are in the autistic spectrum, especially with those children with communication deficits, transition and socialization issues.


I don't really know any stats on this.  What I do know is that frequently on the boards and in real life, people will say (especially those who work in psychology, oddly) that they can find autism spectrum disorders, including Asperger's, on a regular screening.  One professional on these boards even suggested that getting evaluations from specialized professionals in the autism field wasn't necessary because a regular developmental pediatrician would pick it up.  I'm not saying that SpecEdTeach is necessarily in agreement with this, but I do want to point out that anyone who believes it is an easy early diagnoses may not be seeing the big picture of the difficulty in diagnoses of very high functioning kids.  These boards are full of parents who have experienced spending years trying to find an appropriate diagnoses for their child before they found a correct one and adequate help.  My own son was seen by early intervention (age 2) and they couldn't see my concerns.  Back again at age 5, diagnoses of ADHD and probable NVLD.  Age 7, anxiety and ADHD.  Four years straight of med tweaking, school intervention and so on.  The Asperger's diagnoses didn't happen until age 11.  I have met so many other people in these shoes.  18 month to 3 year olds are not particularly socially sophisticated yet, and home and school exposure to different situations really vary, so it isn't unusual for professionals to say that it is necessary to wait and see how things progress.  If there's a communication issue, professionals can be a bit quicker to jump on things, but kids with Asperger's often don't have communication issues.  My own son had no delays in anything accept making a friend, and he could still have casual social exchange at a younger age (18 - 3 years) like "Hi" or "What's your dog's name?" or "Look at this bug in the sand pit".  Parallel play is normal in toddlers, as is very casual friendship more in line with acquaintance, so subtler social problems would be hard to spot.  But when a school age child is speaking very formally with peers and doesn't seem interested in friendships, or tries to but can't, that's a little more unusual. 

 

Not related to this post, but to Asperger's diagnoses in general, is that a lot of people perceive that kids on the Autistic spectrum have way greater or way different difficulties than those with learning disabilities or ADHD, we've even had parents feeling that having a different forum for these problems would be suitable.  Yet, having worked with special needs kids in the past, I've seen kids with "plain old" ADHD have more trouble than some kids on the spectrum.  A lot of kids on the spectrum would pass for just having a learning disability or being "quirky" if the diagnoses wasn't disclosed.  The only people who seem to just "know" my son is on the spectrum without my saying are close friends or family of other people with high functioning autism.  There's such a range of ability and behavior along the spectrum, I think it's not always easy to recognize, even for professionals.


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#41 of 45 Old 10-21-2012, 04:17 PM
 
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Absolutely 100 percent the case in our families experience. 

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#42 of 45 Old 10-21-2012, 05:30 PM
 
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Not related to this post, but to Asperger's diagnoses in general, is that a lot of people perceive that kids on the Autistic spectrum have way greater or way different difficulties than those with learning disabilities or ADHD, we've even had parents feeling that having a different forum for these problems would be suitable.  Yet, having worked with special needs kids in the past, I've seen kids with "plain old" ADHD have more trouble than some kids on the spectrum.  A lot of kids on the spectrum would pass for just having a learning disability or being "quirky" if the diagnoses wasn't disclosed.  The only people who seem to just "know" my son is on the spectrum without my saying are close friends or family of other people with high functioning autism.  There's such a range of ability and behavior along the spectrum, I think it's not always easy to recognize, even for professionals.

 

Exactly! I doubt DS1 is Asperger's, he is only 3, he has a PDD-NOS dx right now. Almost no one sees the ASD, he passes as quirky. People are often stunned when I reveal his dx, even therapists. He is though, we traveled to get his dx through a child development center at a Children's Hospital, I have no doubts that he is ASD. DS1 has his difficulties, and life isn't a piece of cake with him BUT compared to my oldest who "just" has SPD, anxiety disorder, and dyslexia, he is a million and one times easier. She is almost 10, medicated, has in in 4-5 hours of weekly therapy for years, and every single day with her leaves me wanting to bang my head repeatedly against the wall. Everything is so very difficult with her, in every accept of life, it has not gotten any easier with maturity or age. I don't know if it ever will. I almost worry more about her being a "functional adult" then I do my child with ASD. 


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#43 of 45 Old 10-21-2012, 08:01 PM
 
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Asperger Syndrome can be diagnosed at 18 months.  Most children are diagnosed between the ages of 21 months and 3 years of age.  Early intervention has been proven by research to be beneficial to those who are in the autistic spectrum, especially with those children with communication deficits, transition and socialization issues.

 

No to the bolded.

 

Asperger's is typically diagnosed after 3, and many are diagnosed at school age.   Many kids who end up with an Asperger's diagnosis have a PDD-NOS diagnosis as it's suspected/believed they are on the spectrum, but are too young to be fully assessed against the range of PDD criteria.  Many kids who end up with an Asperger's diagnosis also go through a series of other diagnoses first, as previous posters have pointed out. 

 

Early Intervention absolutely can help, but many kids on the spectrum are diagnosed after the EI years.

 

I wonder about the interest in an 18-month old thread, about a child who has aged out of EI.

 


OP, if you see this:  I hope things have worked out for you and your child.  Was a standardized instrument ever used?


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#44 of 45 Old 10-24-2012, 06:03 PM - Thread Starter
 
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OP here... it is strange to see I thread that I started so long ago pop up. Interesting timing, as we just recently did get another Psychiatric opinion due to another huge flare-up in anxiety and behavioural escalations. This Psychiatrist feels strongly that DS is not on the spectrum, and that the primary problem that needs to be addressed is anxiety. We, as parents, are still not entirely confident that ASD has been completely ruled out and will never be looked at again, but for now we are treating the anxiety as the primary focus (medication and trying to set up CBT), and are still working on understanding of social pragmatics, feelings, non-literal language, etc. at home. We have tried counseling, group CBT (based on the Coping Cats program), and had a language assessment with a focus on pragmatics and non-literal language since I started this thread, but have not had another evaluation specific to ASD. Fortunately, the school has been very supportive without having an official IEP or diagnosis on file, and minor accommodations are being made to reduce his anxiety level at school and he has been kept with a good group of peers which has helped with some of the social challenges. This year he is showing more signs of anxiety at school, and school staff are aware that he is being treated (including meds) for anxiety, and they are also aware that he does have some "spectrumy traits" but that there is disagreement over whether or not he fits the diagnosis. At some point we may need to have formal documentation on file at school, and we will probably do another full Psych ax at that time to figure out what the best "label" is, and exactly what accommodations will help him the most.

 

Re: Aspergers being diagnosed young... It certainly isn't being diagnosed prior to 3 around here, most Aspergers diagnoses are being made in the school years. I do think there are probably a small subset of kids who could be accurately diagnosed prior to age 3, but many kids with Aspergers seem a little quirky when they are young, but their social challenges don't show up very clearly until the social expectations increase during the school years.

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#45 of 45 Old 10-25-2012, 10:22 AM
 
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Hey, I remember this thread!

 

My ds is in his second year of public school now, and had really markedly improved. I think he has a delay in brain development more than anything else - not the intellectual bits, but the bits that handle fine motor and emotional self-control. He had a full psych eval by the school last year and was given "an academic diagnosis of autism," but I'm pretty sure that nobody believes him to be autistic in the medical sense of the term. Spectrummy is more like it. He is getting speech therapy with a bunch of other similar kids, and has an IEP that includes some behavioral accommodations (he can give himself "time-outs" if he thinks he's going to lose his cool, stuff like that). I'm still working on getting him a full OT eval to see if he qualifies for some help with his fine motor skills. 

 

Basically, we're thrilled. He is so much happier and more socially functional than he was when I posted here 18 months ago. If he continues to make the kind of progress he has made, I think he has a real chance at "passing for normal" in adulthood. Which is all I've ever been able to do winky.gif

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