disclosure of diagnosis... concerns

[mysweetboys]

My DS (6y.o.) has received a dx of Asperger's and Anxiety Disorder NOS via a private psychological assessment that we pursued. However, we are not absolutely confident that these diagnoses are correct (primarily because the Asperger's criteria do not seem to be met consistently) and are getting a 2nd opinion. One of our concerns is that our DS does not currently show any concerning behaviors at school; he does misinterpret social situations and can get very upset and anxious, but he holds it together until he gets home. He used to show some difficulty tolerating changes in routine at school and did not play with others much, but he is doing better with these and his current teacher has absolutely no concerns. The primary reason we had the assessment done was related to explosive outbursts at home (which are severe, but periodic in nature and appear to coincide with increased stressors outside the home).

I wonder how wise it is to disclose these diagnoses to the school (and the community at large I suppose) when he appears to everyone in those environments to be managing well (although of course we do have the impact at home depending on how he is dealing with stressors in other environments). I am particularly concerned because once you disclose a diagnosis, there's really no way to take that back... and I wonder if he will even truly meet the diagnostic criteria in the future.

The funny thing is that I work with kids with a wide variety of diagnoses and I actually encourage parents to seek out evaluations to get the correct "labels" for their child so that they can receive the supports that they need in order to succeed. Yet here I am, feeling very conflicted about whether it is in his best interests to share the information...

Any thoughts or personal experience?

[beenmum]

 6 is a bit young IMO (and professional opinion) to be 100% sure that your son has Aspergers. And since you said yourself that you're not 100% convienced this is the case, I woudlnt tell anyone right now until you are sure. The concern is switching dx's with the school can backfire and make the school take the new dx less seriously.

I would focus on the behaviours when dealing with the school and not the dx right now.

My ODD dx'd changed so many times it was awful. She went from being Autistc with Dev Delay, to being HF autistic with Dev delay, to being ADHD with Dev delay and autistic tendencies and now she is just autistic with Dev Delay.

I do believe that they are removing Aspergers from the DSM 5 and just labelling everything autism from what I have heard. YOu may want to wait until that time, and have his Dx reflect the new autism dx.

[mysweetboys]

Thanks for your reply. Lots to think about for sure (especially as someone who tends to overthink everything...).

[Linda on the move]

I would hold off on telling the school until/unless you decide to ask for accommodations.

Life gets more complicated every year, and some kids on the spectrum develop along their own little timelines, so a child who does OK at 6 may or may not do OK at a later age. It just depends.

My DD has Asperger's and the sh*t didn't really hit the fan until middle school.

Other kids can look quite quirky at 6 and seem pretty darn normal by middle school.

Even when my DD's behaviors become debilitating for her, some of her teachers thought she seemed fine. She shuts down when she's overwhelmed, so she just seemed quiet. They didn't see the other side -- panic attacks at entering the school, banging her head on the table while doing homework, pacing the house in the middle of the night.

My DD can hold it together in many situations (or just shut down) but it doesn't mean that she's doing "OK."  If your son's problems at home increase, I suggest seeking accommodations to lessen his stress, even if he isn't acting out that stress at school.

[buttercup]

I am assuming he does not have an IEP because of the private eval.  There is always the possibility that even if you disclose it, the school is not going to evaluate him because his special needs is not affecting his education.  My only concern is that as he gets older and his peers begin to develop socially, then he may be left behind or sort of left out because his peers and the teachers are not aware of his special needs, if he does have Asperger's Syndrome.  Misunderstanding by peers can lead to other issues, such as being picked on or being bullied.  I am not saying that would happen, but that is always a possibility for children and if he has difficulty interpreting social situations, then there may be a possibility that someone is interacting with him in a negative manner and he may not be aware of it. 

If he was my child, I would not tell the school but I would have regular communications with the teacher about some issues he may have socially so she can assist him in the future should the need arise.

[mysweetboys]

Thanks for your input, Linda. DS is similar in that, as the psychologist put it, he internalizes everything at school and then externalizes at home (so school mostly sees him as being a quiet child who follows the rules). We have disclosed some of this to the school as needed and had some small accommodations made for a short time without any of it being official, but I know that we may need to make things official in the future. It's just so hard to know for sure whether it will really be of benefit to him in the long run in a situation like this... time will probably make it more clear, and there really is no need to rush to decide what to do at this point I suppose.

ETA - Buttercup - you are correct he does not have an IEP. We are in Ontario Canada, so the process is a little different here and with a diagnosis they will give an IEP (they don't need to do their own eval). However, at this point he is performing at or above grade level so it really is just social and anxiety related issues that would need to be addressed. I would think that some of this could continue to be done informally as long as his teacher/administration are supportive, although I am very aware that social concerns could increase as he gets older. My hope is that we can work at both anxiety management and social thinking/social understanding and over time this will be less of an issue, but I know he will likely continue to have some issues.

[Linda on the move]

Originally Posted by mysweetboys 
However, at this point he is performing at or above grade level so it really is just social and anxiety related issues that would need to be addressed.

My DD is above grade level in most subjects, but needed accommodation to pass 7th grade. She has a slower verbal processing speed than average, and lack the ability to ask questions in class (due to anxiety). She has writes slowly due to fine motor deficits. Those thing combined to her not having a clue what her homework was in her classes, or being able to complete it all each night. 

He may need accommodations eventually, even though they may not have a thing to do with how bright he is. 

You might check into a social skills class for him, now or later, either way. Some kids pick up social skills naturally and some don't. I think it was one of the best things we did for DD. She sometimes opt to not bother interacting with other people (because she doesn't have the same need for connection that most of us do) but she has far less anxiety about social situations now. She's happier and more at peace with herself after the class. Where we live, a certain dx wasn't not required for the class.

[BeautyforAshes]

If it were me, I'd probably hold off on it, especially until you get a second opinion.  I would disclose it on a "need to know" basis if/when accommdations need to be made, etc.

[mysweetboys]

Thanks for the input! We will definitely hold off on disclosing until we have another opinion, and will re-evaluate after that.

[Tigerle]

I live in rural Europe and for us, an ASD diagnosis does not only carry social stigma but also might preclude educational options rather than help with accomodations in school. So we feel we have to be very selective about what we share with school and others outside the immediate family. 

We did share that we were going to have DS evaluated because there were some behavioral concerns in preschool (not bad enough for the teachers to push for an eval, but from their reaction I could tell they felt it was an appropriate step on our part) and I thought they ought to know that we were concerned as well and taking steps - though it was mostly stuff we were seeing at home, like explosions, some OCD-looking behaviour, tics and disordered sleep, and increasingly, reports that other children did not want to play with him, which made us decide to pursue the eval (NOT something that had the teachers concerned for some reason). I did mention to them that I suspected sensory issues (trying to reframe rather aggressive sensory seeking). Part of the eval was having a questionnaire filled in by the preschool teachers, which I gathered from them was a rather routine demand so proabably did not raise major red flags. I also mentioned that the psych thought DS' problems stemmed from the huge discrepancy between his clearly very advanced cognitive but possibly delayed socio-emotional development (an issue they are aware of) and that they were pursuing further testing. I did NOT share that they were evaluating for ASD.

At this point, though they talked of "some autistic traits" and "needing to watch his development", full-blown ASD is off the table. So we feel comfortable not sharing this concern at all with the school. We do not have the results in writing yet, but I am already planning what to share. I feel they ought to know the minor concerns like that he is "anxious", "highly sensitive", "extremely perceptive", that he is easily overwhelmed in social situations, that there are reasons to suspect, due to his low scores for receptive language, that he may have an auditory processing disorder, which makes him very sensitive to noise, and makes it hard for him to follow verbal directions, that he has problems with body awareness and sensory seeking. I feel comfortable withholding larger concerns -  I want them to think "poor sensitive, anxious kid" not "oh no, disturbed kid" at this point.

[kavamamakava]

I think it's a "need to know" thing. If you do not need special accommodations for your son at school then there's no need to disclose the diagnosis to the school.  If you are meeting with his teacher and it comes up, that's not really a formal disclosure of diagnosis anyway. It won't carry from that teacher to your child's school records or be taken into consideration next year.

But if you do pursue school services the diagnosis will be critical in obtaining proper services to support your son in his education. 

[kavamamakava]

Originally Posted by mysweetboys 

Thanks for your input, Linda. DS is similar in that, as the psychologist put it, he internalizes everything at school and then externalizes at home (so school mostly sees him as being a quiet child who follows the rules). We have disclosed some of this to the school as needed and had some small accommodations made for a short time without any of it being official, but I know that we may need to make things official in the future. It's just so hard to know for sure whether it will really be of benefit to him in the long run in a situation like this... time will probably make it more clear, and there really is no need to rush to decide what to do at this point I suppose.

ETA - Buttercup - you are correct he does not have an IEP. We are in Ontario Canada, so the process is a little different here and with a diagnosis they will give an IEP (they don't need to do their own eval). However, at this point he is performing at or above grade level so it really is just social and anxiety related issues that would need to be addressed. I would think that some of this could continue to be done informally as long as his teacher/administration are supportive, although I am very aware that social concerns could increase as he gets older. My hope is that we can work at both anxiety management and social thinking/social understanding and over time this will be less of an issue, but I know he will likely continue to have some issues.

If your son continues to perform at or above grade level and has the potential to perform at an even higher level, you may want to address this with the school. His social and anxiety related issues could be holding him back from a more academically advanced program and you would want the school to know of his challenges so they can support him in those areas and help him reach his full academic potential. 
 

[eyebeeablessing]

My firend has an 11 year old and is described as what you wrote. He does have Aspergers.

But like PP i would wait until you have a 2 nd opinion to discuss a plan of action and care with anyone.

[beachcomber]

I agree with those who've suggested you hold off for the time being, at least until you're satisfied about his diagnoses. That said, Aspie criteria don't need to be constant and unchanging to be Aspie. My DD has HFA and is a different kid outside the house than inside it. Nobody in the real world sees her meltdowns and tantrums and acting out nor do they see her motor mouth chatting and singing and intensity. She's a watchful little mouse outside the houe and everyone thinks she's all sweetness and sunshine. So, I just wanted you to know that Aspie kids aren't necessarily consistent in their symptoms, how they show them or even which ones they have from one month to the next..

[Smithie]

Wow, a kid who's functional OUTSIDE the home and struggles INSIDE the home. I know the grass is always greener on the other side of the fence, but I wish my son's issues manifested that way. 

So... I have never had a choice about disclosing, and I don't feel that it has had negative consequences to talk about all the assessments and attempted treatments over the years. But if my son was functional at school, I think I'd apply the "ain't broke don't fix it" methodology for a few years at least. I wouldn't want a kid walking into a middle school without the counselor knowing he had a social interaction disorder. (Not that all middle schoolers don't seem to have one.) 

[Linda on the move]

Originally Posted by Smithie 
I wouldn't want a kid walking into a middle school without the counselor knowing he had a social interaction disorder. (Not that all middle schoolers don't seem to have one.) 

  When my ASD was in middle school and was in a social skills class, she asked why they didn't have ALL the kids take social skills class. She felt most her class mates could benefit from it.

[mysweetboys]

Originally Posted by Tigerle 

I live in rural Europe and for us, an ASD diagnosis does not only carry social stigma but also might preclude educational options rather than help with accomodations in school. So we feel we have to be very selective about what we share with school and others outside the immediate family. 

We did share that we were going to have DS evaluated because there were some behavioral concerns in preschool (not bad enough for the teachers to push for an eval, but from their reaction I could tell they felt it was an appropriate step on our part) and I thought they ought to know that we were concerned as well and taking steps - though it was mostly stuff we were seeing at home, like explosions, some OCD-looking behaviour, tics and disordered sleep, and increasingly, reports that other children did not want to play with him, which made us decide to pursue the eval (NOT something that had the teachers concerned for some reason). I did mention to them that I suspected sensory issues (trying to reframe rather aggressive sensory seeking). Part of the eval was having a questionnaire filled in by the preschool teachers, which I gathered from them was a rather routine demand so proabably did not raise major red flags. I also mentioned that the psych thought DS' problems stemmed from the huge discrepancy between his clearly very advanced cognitive but possibly delayed socio-emotional development (an issue they are aware of) and that they were pursuing further testing. I did NOT share that they were evaluating for ASD.

At this point, though they talked of "some autistic traits" and "needing to watch his development", full-blown ASD is off the table. So we feel comfortable not sharing this concern at all with the school. We do not have the results in writing yet, but I am already planning what to share. I feel they ought to know the minor concerns like that he is "anxious", "highly sensitive", "extremely perceptive", that he is easily overwhelmed in social situations, that there are reasons to suspect, due to his low scores for receptive language, that he may have an auditory processing disorder, which makes him very sensitive to noise, and makes it hard for him to follow verbal directions, that he has problems with body awareness and sensory seeking. I feel comfortable withholding larger concerns -  I want them to think "poor sensitive, anxious kid" not "oh no, disturbed kid" at this point.

We also took the approach of wanting them to think "poor sensitive, anxious kid" for DS's Junior and Senior Kindergarten years - we absolutely framed things up that way and simply did not mention any of the behavioral concerns in hopes that it would not be an issue that he would show there. Fortunately, that seemed to serve DS well and the teachers made minor accommodations to allow him more control over sensory input and prepare him for changes; gradually we began expressing that he needed some support for increasing socialization on the playground and this was also generally dealt with positively. We disclosed a bit more this year as escalations increased at home and we needed to get to the bottom of it. His teacher does know about the Psychological assessment as he had to fill out many quesionnaires, but he doesn't know what diagnoses were on the table. He also knows he's missed a lot of time for "appointments", but he doesn't know the specifics of the appointments / what professionals they are with. Honestly, he probably thinks we're crazy parents dragging DS around to all these appointments,as DS holds it together so well at school... better that he think we're crazy parents than categorize DS as a "disturbed child" as he would likely do if he saw how he melts down and rages at home.

Originally Posted by Smithie 

Wow, a kid who's functional OUTSIDE the home and struggles INSIDE the home. I know the grass is always greener on the other side of the fence, but I wish my son's issues manifested that way. 

So... I have never had a choice about disclosing, and I don't feel that it has had negative consequences to talk about all the assessments and attempted treatments over the years. But if my son was functional at school, I think I'd apply the "ain't broke don't fix it" methodology for a few years at least. I wouldn't want a kid walking into a middle school without the counselor knowing he had a social interaction disorder. (Not that all middle schoolers don't seem to have one.) 

Trust me, I know how fortunate we are that DS is able to hold it together in public settings. I work with many children who can't (including many whose behaviors are far worse outside the home), and that was one of my biggest fears prior to DS starting school. I had actually thought through the entire plan for taking time off work and potentially homeschooling if necessary, as I was worried the school would be calling me daily about explosive behaviors. I still fear that eventually it may all become too much for him and he may not be able to hold it together at school at some point in time... but all I can do is keep working on skills and strategies to help him cope and hope it never comes to that. Although I will say that his explosive behaviors at home have had a huge impact on our family functioning, and the grass is really not particularly green here right now either...

It is good to hear of others' experiences with kids who are on the spectrum but not at all consistent in their symptomatic presentation. Thanks to everyone who has shared their input!

[Wachee]

I work with kids with Autism and my recommendation is always the same, if there is no need do not disclose. They are treated differently when there is a diagnosis - they will be let away with things because "they don't know any better" or the opposite - they failed a test well we better do an IEP for math then. A suggestion I would have so that you can keep an independent eye out is hire someone who knows what to look for to "volunteer" with a community group that your son is involved in or can get involved in to keep an eye out for trouble points with his peers or similar situations as to what is happening at home now. Then you will have a heads up if things start happening and can make a plan in advance of "teachers concerns" or try to head the problems off at the pass with some intervention that no one will know about.

[Smithie]

"Although I will say that his explosive behaviors at home have had a huge impact on our family functioning, and the grass is really not particularly green here right now either..."

My special snowflake is homeschooled, and we have peace and harmony most days. Not that anybody who knows us outside the home will believe me. They probably think I keep him in a cage. 

[Linda on the move]

Originally Posted by mysweetboys 

 Although I will say that his explosive behaviors at home have had a huge impact on our family functioning, and the grass is really not particularly green here right now either...

Can you tie his explosions at home with anything specific at school, find patterns? Because explosivness at home is a reason for accommodation at school. But you kinda got to figure out what to ask for. "Do something different" isn't really a request that school know what to do with, "no timed math test", however, is something they understand.

Also, what kind of sensory input does he get? For my DD, a good sensory diet is VERY helpful.