disclosure of diagnosis... concerns - Page 2

[mysweetboys]

He discloses very little to us about school, but from the bits and pieces we have been able to put together most of the things he is anxious/upset about seem to be either social or sensory related. For example:

- crowding or being bumped on the bus (younger kids are required to sit 3 kids/seat)

- violent or aggressive play themes or talk on the playground

- misunderstanding/taking things literally (often associated with the violent themes, but not exclusively)

- other kids breaking the rules sometimes bothers him

- changes in routine (supply teachers, etc.) used to bother him a lot but don't seem to be as big a factor now (though I think they still impact)

Academics don't seem to be a trigger at this point. If anything, I think he is not challenged enough at school, but at the same time I'm not sure that asking for more challenging work is in his best interests either... IQ and achievement testing showed an unusual amount of variability, with some scores in the gifted range and others squarely in the average range; his area of weakness was the comprehension subtest of the WISC which requires social understanding... which I guess should not surprise me. Processing speed and memory were fine - both high average. No ADHD or CAPD. Achievement scores were almost all above the predicted level based on verbal IQ, despite the fact that he is in French Immersion (with no formal English instruction) and testing was done in English. French reading skills are well below English, but still above grade level expectations for immersion kids and primarily held back by lack of opportunity (kids are being required to read a certain # of texts at each level rather than starting at their current level and progressing from there), and lack of French vocabulary (which is appropriate for grade level in French Immersion but does hold him back from understanding more difficult French text).  So although there may be academic issues at some point in the future, at this point he doesn't express any concerns and is doing well academically.

Sensory diet wise, we have lots of opportunities for sensory-rich play at home (especially proprioceptive and vestibular input), and give lots of opportunities for sensory input that is calming for him too (quiet place to retreat to, stress balls, gum). At school I think he is sometimes overwhelmed by sensory input but will freeze rather than acting out. He is choosing to stay inside for recess whenever he can, which allows him a chance to retreat from unwanted sensory input... but also does not give him enough activity or social opportunities (although there is sometimes a small group of quiet, calm kids who stay in and that may be better for him socially then the playground anyway...).

Any thoughts on what accommodations you would ask for if we were going to move forward and share more details with the school in order to get more in place for him? (I have some thoughts on this, but would love input from others...).

[Linda on the move]

Can you either drive him back and forth or arrange for someone else to do so? The regular school bus is no place for kids with sensory issues (IMHO).

My DD qualified to ride the short bus, but we avoided that because she was mainstreamed and felt that it would be awkward for her socially, so I just drove her.

Having discussed this with both my neurotypical and my ASD (who rode the bus 1 time) I'd figure out a different way to get him back and forth.

[mysweetboys]

I have rearranged my work schedule so that either DH or I can pick him up daily after school, which has been working well. Arranging to take him in the morning is more difficult - DH can't do it except in emergency circumstances,and there are days when it would not be possible for me to do it either (unless I quit work... which I have contemplated, but would have an enormous impact on our whole family so it would be a very very difficult decision to make). I have considered trying to arrange a way to do the drop off in the morning, but I actually worry that I'd have a harder time getting both kids to school if I did that. My younger DS also has anxiety about school, but climbs on the bus with no issues (I think because he doesn't have to separate from his brother at the same time as separating from a parent). Separating from me at the school seems harder for DS#2.

DS#1 has no problems separating from me if I drop him off at school, but if he is having a bad morning he would fight going to school much more if I were driving him. He has fought going on the bus a couple of days this year, but usually even if he is having a really bad morning he will climb on the bus with no issues (the issues are usually around getting his outdoor clothes on to go outside - but both DH and I are usually home at that time so we can spell each other off to preserve our patience).

For the last 2 years he took a taxi van to school (paid for by the school board because of the length of bus ride being too long for a kindergartener). Unfortunately they have rearranged bus routes so that they no longer have to provide taxi except for kids with special needs. Likely using the Aspergers dx we could get a taxi for him if we fought hard enough, but then DS#2 would have to ride the bus by himself... and I'm not sure DS#1 would want to take the taxi at this stage either, though I think it was much better for him as a kindergartener.

[mysweetboys]

Well, the issue around disclosing diagnosis or not is off the table for now. The Psychiatrist who did the telepsych conference (video conference) today thinks the Psychologist's interpretations and diagnoses are incorrect.

Basically the Psychiatrist thinks we are crap parents who are not telling the truth about what is happening at home because that in her mind is the only explanation for why he would be so well behaved at school and not at home. Our local Pediatrician and mental health clinician who were also present for the telepsych tried to back us up that we were knowledgeable and consistent, and had put in place many very good strategies. Psychiatrist thinks we need someone to see what is actually going on in our home because our self-report cannot possibly be accurate. Mind you, she also thinks DS and both of us parents must have been lying when he responded that he was reading Harry Potter and she indicated that couldn't be true even after we stated that he was. Ummm, WTH?? Why would any of us lie about what he is reading? I guess she thinks we must be pathological liars in addition to being crap parents. The Pediatrician handed me her copy of the Psychology report I had given her so that I could read his standardized scores on reading skills to back up that in fact it could be true (Psychiatrist had this report, and had reviewed it... but I still had to prove it could be true by citing scores!).

After the teleconference ended the mental health clinician threw up her hands and said she could try to put through a referral for someone to observe in our home and help us develop parenting strategies, but she thinks it is a waste of time and money and they will wonder why they are even there. We will call her next week to let her know, but we will probably go ahead even though we think it will be useless. Best case scenario is that we really are bad parents and are such idiots that we don't even realize it - that truly is best case because it means we could have a relatively quick fix to the behavior issues, but I don't think it's true. Worst case scenario: we are decent parents who receive very little actual help from the process and lots of hassle from having these people in our house... but perhaps then we'll have more documentation to back us up in getting real professional help to get to the bottom of what is going on and get the correct treatment in place.

So frustrated! Uggghhh!!!

[Linda on the move]

I'm so sorry.

We went through a period where my DD would freak out at the beginning of the school (taking an hour or so to enter the building the help of the social worker, and then spending another hour or so in the social workers office) but eventually getting her day going and doing fine in all her classes from about 3rd period on. Then she would come home and completely freak out -- doing things like banging her head into a table as hard as she could until we could restrain her.

When we were in meetings with her teachers to figure out accommodations, most of her teachers were really surprised there were any problems at all. They didn't see the beginning of the day stuff, and she acted completely normal in their classes.

I really don't know what to tell you. One thing that helped was getting my DD into talk therapy. The talk therapy was helpful, and the therapist wrote a letter to the school. If you could schedule appointments for the times your son is most likely to be freaking out, it might help. It's helpful to have a *professional* witness the freakouts.

[Tigerle]

I am very sorry. what a crap scenario.

DS has been evaluated for ASD and the result has been negative. however, some of the issues which have prompted us to seek the eval in the first place remain so the psych suggested sessions with an OT with a specialization in developmental counseling and she's been doing videos of us interacting with DS during games. I thought these might be a waste of time and money too (she picked games that DS was good at and he had a the full attention of a parent in a quiet room, so how could this tell us anything about he times we had problems?) but I was surprised how much I liked seeing us interact and having an outsider comment on it. Specifically as they were mostly nice comments, telling us we were interacting very well, being kind and consistent and mostly doing things just right IHO. And maybe the documentation will be useful for you.

DS, by now, seems to hold it together in school, but we still have explosions at home. On the whole, I much prefer it that way - I can change, and accomodate, and schools sometimes just can't.

[mysweetboys]

Thanks for the support. Still processing everything... I had really hoped this appointment would help to clarify the true issues and/or diagnosis (didn't really care about the label as much as the underlying issues being correctly identified) and help us to get the best possible supports in place. Definitely not what happened. And I could have gotten that kind of snap judgement from anyone walking down the street without costing anyone a cent, and it would have been just as valid in my mind...

When I explained that he is quite rigid and on edge about following the rules at school, she actually said something along the lines of him needing to have more of that fear at home so he will behave. Yep, that's after we've disclosed family history of anxiety and his anxiety. Great, let's make a child MORE anxious because surely that will help him to learn to handle life's stressors more effectively. Seriously, when he's going through a particularly bad period of time even the mention of a reward or consequence escalates his anxiety and his behavior goes through the roof, he seems like he panics and cannot control his behavior in order to get the desired (or avoid the undesired) outcome. I don't agree that more fear will help him learn how to control his reactions.

Edited by mysweetboys - 4/21/11 at 8:34pm

[FarmerBeth]

Do you have any way of working with a different psychiatrist as part of the interdisciplinary team?  If you aren't feeling that what you are getting from this person is helpful or supportive, it could hold back getting the right adaptations in place but most of all it just can make the family feel crappy.  We (the parents) went through something like this and it stressed the entire family (especially the socially sensitive siblings) a lot but more importantly, it held us back on getting the right treatment and adaptations.  Getting a better psychiatrist made a HUGE difference.

[mysweetboys]

We will look into getting another psychiatrist's opinion, but I don't think it will be a straightforward process (and they would likely have access to the record from this consultation which I think would bias them). The more I think about it, the more I realize all the information that the psychiatrist did not bother to gather. She had made up her mind before she ever spoken with us based on very little information, and focused on a few (marginally relevant) topics for most of the appointment rather than gathering full background prior to making a conclusion. She based her reasoning that it must be a problem within the home on the fact that his current teacher reported no concerns with anxiety, behavior, or social skills. She did not bother to ask about previous teachers or observations of others in the school - his previous teachers were well aware of his anxiety and rigidity and his social difficulties, and although they had no behavior concerns they did recognize that his behavior changed when stressed. The counsellor who worked with him at school realized in just a few sessions that he has very high expectations for himself and is very rigid, and documented for the school to recognize that this may cause anxiety when things do not go as he thinks they should. The principal is also observant enough to have noticed his anxiety and sensory issues when he is surrounded by rough play on the playground, and she can see that he works hard to hold it together. But because his current teacher is not particularly perceptive and is focused on the kids who are disruptive, the judgement is made that it must be a problem in the home... Uggghh, I think the more we try to figure out how to help DS and what we need to put in place the more roadblocks we hit.

[FarmerBeth]

Ugh!  I know this is only somewhat reassuring, but I suppose you have about six weeks of school left, roughly.  If you can't get some of this resolved through getting a second opinion from a new psychiatrist, maybe next year's teacher will be more observant and the psychiatrist can revisit this with new information.  Is your school small enough for you to have contact with the teacher for next year and discuss any accomodations that would reduce some of his stress, and maybe ask her to keep an eye out for certain behaviors?  Is the mental health clinician, a counsellor or a psychologist an option for you son having someone to discuss his feelings with or for giving you some concrete suggestions that would help?

[mysweetboys]

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!

[FarmerBeth]

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.

[Tigerle]

Originally Posted by mysweetboys 

 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?

[mysweetboys]

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.).

[FarmerBeth]

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.

[ReadingMama]

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.

[ReadingMama]

Originally Posted by FarmerBeth 

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? 

[SpecEdTeach]

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.

[Linda on the move]

Originally Posted by SpecEdTeach 

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?

[FarmerBeth]

Originally Posted by SpecEdTeach 

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.