We requested that the school evaluate DS5, who is in kindergarten, despite the fact that his (excellent) K teacher thought that he was within the normal range for all of his behaviors. We had the evaluation meeting just before break, and it turned out that they qualified him for an IEP on the basis of behavior and also speech. Our IEP meeting is this Friday.

DD9 is on a 504 for dysgraphia and ADHD, neither of which I believe that she has (at least not any more), and SPD, which she probably does. Honestly, I don't think she's actually receiving any accommodations that any kid in the class wouldn't get without a need for a 504 right now. But the IEP process is a little different and new to us.

They were talking about "push-in" to work with him on social skills in the classroom. Can anyone explain to me a little about what that means? Right now he's still really in a parallel play phase, and rarely interacts much with other kids in the classroom. He likes them - he just doesn't really do stuff with them. I'm sure they'll tell me more about what they're planning at the meeting on Friday, but I'd like to go in having some understanding.

The SLP wants to work with him on summarizing and other comprehension skills (I assume on a "pull-out" basis). His teacher has him in a much lower reading group than we expected, mostly because he can't seem to retell a story that he just read. But the SLP discovered that he can't retell a story that he just heard any better, so the problem doesn't really necessarily seem to be reading comprehension. "Hyperlexia" has been thrown around a bit, but he's able to define words quite well, so I don't think that's exactly right. He did really well on a test of identifying opposites of words, for example.

We had a neuropsych test done, and the advice pretty much boiled down to "no diagnosis, but something is not quite right with this kid."

Does anyone have any BTDT advice for me?

Hi Elizabeth,


At this phase, the first task is to make a list of all the issues identified in the evaluation, and start imagining what is needed to remediate or accommodate those issues. I like to walk into IEP meetings with a summary list of all the things that MUST be addressed before we leave.


We had a ton of push-in services for DS11, and it was the single best thing that school did. Instead of pulling DS out, we had a special ed teacher in the classroom to support skills like learning to participate appropriately, work in a group, raise your hand at the right time, etc. The goal from the outset is to build specific skills, then fade the support so the child is demonstrating those skills more and more independently.

The special ed teacher can also take data on problem behaviors (or lack of positive behaviors like hand-raising or conversation with others) and that data tells you how things are going and how to adjust the strategy.


Likely pull-out, and likely a good idea.

Honestly, I wish our school had been this proactive with DS11 at that age.


Both of my kids have retelling issues. For DS11 it is a perspective-taking deficit: he cannot imagine that the other person doesn't already know what's in the story (especially the teacher who gave it to him in the first place)-- and then he can't figure out what is important to tell. This has improved with experience and perspective-taking training.

It can help to have specific testing that separates out the components of reading, so that retelling is tested as a separate skill from decoding or comprehension.

Because our school uses a retelling-based reading test, they have systematically underestimated my kids' comprehension skills.


A hyperlexic may be able to identify meanings of individual words, but then they don't process those into an overall meaning.


How long ago was that? We found that the accuracy of neuropsych evaluations improves as a child goes through the elementary years, and it can take more than one eval to get closer to the truth of what's going on.

What tests did that neuropsych eval include? And what did they find?

DeeDee

For my older son who is now 13, we didn't get an Asperger's dx until my son was nearly 8 years old....that vague speech language social behavior anxiety not sure what is wrong but something is...until I finally pushed for it to be ruled in or out officially.

That's really common, especially with the gifted kids. Our DS11 (2E Asperger's) is so verbally fluent that nobody could really believe he was autistic, and we consulted a lot of professionals before we figured him out.

DeeDee

Well, maybe that's right, then. He's been reading since he was three, and he can read difficult books aloud with very good expression. He's not great at explaining them, but he does fine with comprehension tests that ask questions that are no so open-ended.


The evaluation was in August, just before he started kindergarten. Tests were:

WPPSI-III: VIQ 116, PIQ 121, PSQ 100, FSIQ 119
CTOPP-2: mostly 13's (one 12), Standard score in Rapid Naming 116
Beery VMI: VMI 113, VP 107
WIAT-III: Early Reading Skills 121/133, Alphabet Writing Fluency 80, Numerical Operations 110

She gave him WIAT Word Reading, but couldn't calculate a score given his age. (The computer apparently won't let you fill in some parts when the child is so young.) Test was discontinued when he refused to go on, instead of getting four consecutive zeroes, but he got pretty far into it.

It appears to me that the problem is with retelling, not with comprehension. The neuropsych report says, "Further, although he displays some characteristics of hyperlexia (precocious early reading ability without formal training; "word calling" generally with poor comprehension), his parents and teachers reported that his reading comprehension is quite good. Tests of verbal ability also showed good general verbal comprehension skills."

I don't have a copy of the school testing to be able to tell you which tests they gave him and how he scored on those. I remember that the SLP tests were all over the place, from a 130 on a test of antonyms to a 6th percentile on paragraph comprehension. Based on parent and teacher questionnaires, he was found to be entitled to services for social/emotional behaviors. He flies off the handle at the least thing, and doesn't seem to have strategies beyond screaming for dealing with the world not going his way. The school psychologist wasn't at the meeting in December (he was sick), but we got the report he compiled. Reading it after the meeting, it also says that the test is not diagnostic for autism, but that he scored moderately high on autistic traits. I want to talk to him about that and about whether he should get an ADOS or something.

I expect that we'll wait a couple of years before doing another neuropsych evaluation, but I think it's likely that we will want another one.

This sounds a lot like my ds who has an expressive language disorder. Any type of open-ended writing assignment through him for a loop, but he was (is) a very advanced reader who understands everything he reads. Working with an SLP on summarizing has helped tremendously.


It sounds like he's had a good SLP eval and the school's SLP has a good plan for helping your ds - truly the SLP part of this all sounds very encouraging! The one thing I'd ask about in the meeting is that he be moved up into a higher level reading group that is appropriately challenging for him. With my 2e ds, the one thing that was really difficult to see until it was actually tried, was that remediation didn't work for him when he was given material to work with that was below his intellectual ability. The first time he successfully tackled a writing assignment in school (after literally not producing anything for several years) was when he was given a complex and challenging writing assignment in his gifted pull-out. It's really important to note here that I'm not saying the problem he had with writing was that he wasn't given gifted-level assignments - he had very real problems with expressive language - what I'm saying is he *learned* best and remediation worked much more effectively when it was given at the intellectual level his brain was working at, not at a lower grade level.

Best wishes,

polarbear

We are on the same wavelength (as usual), because that was already something I was going to ask about. I think he actually is in the top-level reading group already, but I want to ask about what books they're having him read in class and how he is doing with it. (At parent-teacher conferences, she said that his measured reading level was at about the level they want kids to reach by the end of kindergarten, so even the level they have him at is relatively high - I just don't think it's as high as what I thought would it would be given what we see at home.) I really do think that his kindergarten teacher is really good and really wants to work with him, so I'm not expecting a lot of pushback there. None of us were expecting the paragraph comprehension scores he got, so we're all sort of feeling our way in figuring out what to do next.

I agree that I really liked the school SLP. I hope she is able to make progress with him. He did seem to enjoy the testing with her, from what she said about it. (When she came to pull him out of class, he insisted on going and asking the teacher if it was OK to go with her, which she said she's never had a child do before. We were all amused by that.)

It is worth paying attention to how they measure reading level. We ended up requesting that they use only a non-retelling-based assessment. Reading A to Z is one such.


A good SLP will help sort this out.

I would *not* call that hyperlexia. Hyperlexics truly don't understand what they're reading.

My DS11 was thought to be possibly hyperlexic, when actually he was just an autistic very early reader. Sometimes the distinction is not obvious.


From what you say, me too.


They didn't give you a copy of the written evaluation team report? They should have. I'd request one. You need that as your guide to what the team found.


My sympathies. DS11 was like that too, and I don't remember K as being our best year, for sure. Things will get better.

I would get a private neuropsych involved, not to repeat the testing you've already got, but to do some supplemental testing. For educational planning, it is worth figuring all this out.

I would definitely want an ADOS and a NEPSY, as well as a Conner's rating scale and a Vineland adaptive skills questionnaire. Perhaps an ASRS (Autism Spectrum Rating Scale) and Achenbach Child Behavior Checklist, though I think those don't start being valid until age 6.

And yes, my preference would be to go to a place where there is a high level of expertise about autism. We got our first testing that started to make sense at the autism center of a children's hospital.

Having a very clear idea of what's going on is, IMO, essential for knowing what to do to improve things.

DeeDee

Oh, I'm sorry - I was unclear. I do have a copy of the school testing at home. I don't have it with me here at work.

Should I ask the school to do the autism testing, or go to his pediatrician and ask for a referral to an autism center? The autism stuff was mentioned in the written report that they gave us in December, but they gave it to us at the meeting, and no one pointed out that bit while we were discussing the report, so I haven't talked to anyone at school yet about it.

Definitely a private tester for ruling autism in or out. You want someone who has seen hundreds (preferably thousands) of autistic kids and borderline-but-not ones, and who will not be confused by the giftedness. This is specialist stuff.

Asking the pediatrician is a fine place to start. There is also a list of diagnosis resources at aspergersyndrome.org .

DeeDee

I presume that the pediatrician will refer me to Seattle Children's, which has an autism center. Is there any reason not to use that one that anyone knows? Feel free to PM me if you don't want to get into specific information "in public."

We are seeing a trusted doc on Thurs--I'll ask.

FWIW the language on their website looks very sensible to me, proven approaches, nothing wacko.

He sounds a little like my 6 year old, who has dyspraxia. Does your DS have any articulation issues, or issues with speech fluency? The neuropsych who assessed DS said it's an "output" issue. He has a problem getting his speech out in a fluent way. His speech is slow and the prosody is odd. So his receptive language is a lot better than expressive. He was delayed with sentence formation (although he a huge vocabulary labeling things).
He also had early reading ability, although his comprehension is fine as long as he can choose a correct answer (i.e. multiple choice test) rather than express an answer (unless it's a simple question that can be answered with a few words or sentence).

In kindergarten he didn't really make any friends til several months into the school year. Now in first grade he has a group of friends and is much more social.

If you go for an autism eval, just make sure you go to a good place that doesn't over-diagnose. The neuropsych I took DS to said that if I had taken him to certain centers they might have slapped him with an asperger's label due to his cognitive ability and odd speech/mannerisms (like flapping hands, walking on toes, etc). But he does fine on tests for asperger's/autism and there are no red flags other than the superficial type ones. There is an overlap between dyspraxia/developmental coordination disorder and autism. Wikipedia has a good page.

No, he was an early speaker and speaks very well. He has a slight lisp, but he's easy to understand, even by non-family members. His prosody is good. He does quote movies a lot, and he watches the same TV episodes over and over again. He doesn't flap or walk on his toes. He is very constipated and has had issues with potty training, though.

I'm always worried about this, because on the one hand, both kids have behaviors that I would describe as "spectrum-y," but neither of them is a classic case of autism or Asperger's.

Some autistic people do have stereotyped (repetitive/odd) behaviors or motor delays, as well as comorbid conditions like dyspraxia, but autistic people all have some delay in social skills, which is not necessarily true with those other disorders. In addition, not all autistic people have the motor issues you describe.

I'm not saying nobody is ever wrongly diagnosed-- it happens-- but a careful neuropsych will tease out the difference between these distinct diagnoses.

It makes sense for parents to ask lots of questions about how the neuropsych arrived at their conclusions, and follow up on any conclusions that don't make sense with the parents' gut feeling.

DeeDee

Those traits do make me think that the further consultation is a good idea.


In the autism community, people say "if you've seen one person with autism, you've seen one person with autism."

There are stereotypes of what constitutes a "classic case," but the reality is that it's more like a set of family resemblances, with no two people having the exact same presentation. In some ways my DS is very typical of "classic" Asperger's, and in other ways very atypical. (He adores travel and novelty! His verbal skills are a strength, not a weakness!) Giftedness only complicates the picture.

A good evaluator will be able to quantify the traits in the way a lay person can't. And if the child doesn't have a spectrum disorder, the information gleaned from the detailed testing can still be very useful in making an educational plan.

DeeDee

I don't know how much over-diagnosis happens but there does seem to be a considerable number of young children who "outgrow" it--probably never had it in the first place. By 5, I would think a diagnosis would be more reliable but still be careful. There was a place I wanted to take DS based on the school's recommendation and the pediatrician refused to give me a referral saying "they diagnose everyone with autism". She sent me to the neuropsych at the university instead. And he made similar comments. we filled out rating scales plus there were a couple tests looking at affect recognition (reading emotions on people's faces?) and "theory of mind", all of which he did fine on.

AFAIK nobody is collecting statistics-- that's a very hard kind of statistic to collect.


I don't know any such cases personally, and those covered in the literature are comparatively few. All children learn and grow, and many who have challenges as young children grow into adults who have learned to manage their difficulties relatively smoothly (although often with invisible effort).

My take on that question is very like that expressed here: http://jerobison.blogspot.com/2013/01/can-we-outgrow-autism.html


Some autistic people have theory of mind; it's a misconception that they can't. My DS can do quite well on those tests. Still autistic.

The ADOS attempts to quantify the social engagement aspect of autism for diagnostic purposes-- it's the best instrument I know of for making the distinction. Rating scales aren't enough IMO.

The reason I recommend going to a major pediatric autism center is that they have access to and much more experience with the latest testing instruments than the average private neuropsych might. And they've seen a lot more kids, so the practitioners tend to have a quite nuanced sense of where the diagnosis applies. Not to say you can't have a bad experience there, just to say that going where the expertise and experience is makes a lot of sense to me.

DeeDee

Here's an article about the study talked about in your link. Small study, but 18 percent who were diagnosed at age 2 no longer met the criteria at age 4. I really don't believe that those people who met the criteria at age 2 but don't at 4 actually have autism. If they did, they would meet the criteria or show definite differences from their peers later on, even if it is only "coping". I think they did indeed "outgrow" it as their brains matured, or they were misdiagnosed, and what those kids really had was social impairment or some "red flags" for autism, maybe sensory processing problems, developmental delays, or another disorder having similar symptoms, but not real autism.
http://online.wsj.com/news/articles/SB10001424127887323301104578255721887372386

Interesting article
http://www.nytimes.com/2012/02/01/opinion/aspergers-history-of-over-diagnosis.html?_r=0

I'm sure this article made a lot of people mad when it came out and I'm not saying that I agree with everything that is says, but I think it makes some interesting points.

DeeDee I'm not sure if you're misunderstanding what I'm saying or not--I'm not telling her to go to a neuropsych vs. an autism center or what exactly an eval should entail. But I do believe there are poor centers or quacks out there who will diagnose based on superficial characteristics. In my DS's case the neuropsych didn't need to do a more intensive eval because he clearly doesn't have autism based on the inventories, their observations of him, and the "theory of mind" type testing. It wasn't just any one thing that they were looking at (like ruling it out just based on one test), There just wasn't enough evidence of it to even do an in-depth eval. On the rating scale he didn't even come close to being out of the normal range. They probably would have done more if there had been red flags on the other tests, but there weren't. He was social and chatty with everyone there and clearly did not have the social component, but there were other things like the hand flapping (which he does sometimes when excited) and voice that a "quack" might have picked up on and made too big of a deal out of it. I also wasn't taking him in just for autism testing, he had a TBI and issues with motor skills, and it was pretty obvious before he was even seen there that what we were dealing with was DCD and brain trauma possibly exacerbating it, but they looked at autism just to make sure. I think since this is a "spectrum" there is a gray area and there is no consensus among professionals about how to define that and who in the gray area should be diagnosed. A "good" center should be able to do it accurately in an older kid over age 2 or 3 but it's not a hard science. So much is subjective.

It's a very small study, and the design looks to me like it is subject to confirmation bias (they chose their evidence selectively and found what they were looking for). This is not yet convincing to me.

And yes, diagnosis at age 2 has historically been very difficult (and note that several years ago, when those early diagnoses in this study happened, the improved standardized tests that are now in use weren't available, so those *were* subjective early diagnoses.

Last, as the autistic author at the link I posted notes, these studies of "success" in becoming "normal" are typically not asking autistic people how hard it is to be them, or how hard it is to "pass" for normal-- only observing from the outside how successfully someone looks "normal."

There is a powerful anti-autistic bias in those studies, in the sense that they do not really take the experience of autistic people into account. Some who pass do it because they've been well trained to pass, but there remains a cost in effort to keep that up.


Yes, there is a line of thinking in the popular media about how "everyone's a little Aspie." (a term I hate, but that's neither here nor there.)

This article isn't really about "overdiagnosis" per se-- the headline is misleading. It's part of a much larger conversation that pits the parents and caregivers of severely ("classically") autistic people against the Asperger's community (many of whom are able to "pass" or "become normal," ahem, see above.) Some people want to exclude Asperger's from the definition of autism and devote all the resources available to helping the most impaired.

As we see it in our house, having a high IQ is no guarantee that autism won't be a problem. It's been a huge challenge for DS11, making his life really difficult at times, and it will continue to be so.


That is true. The quacks can often be recognized by the setup where the diagnosing doctor also has a cure-all treatment to sell. By contrast, in a typical hospital autism center the diagnosing doctor gets paid whether or not the diagnosis is made, they have no financial stake in treatment, and there are long waiting lists for treatment programs; the incentive is more to be correct in the diagnosis so that the right folks get on the treatment list, since everyone will earn their money regardless.

So what you say is true, BUT there are also lots of practitioners who will see a child who clearly has autism, and say "oh, he's just quirky." Or "oh, he's just gifted/has overexcitabilities." DS11 lost several years of early intervention because of several doctors' failure to diagnose what was very clearly there.

In my family's experience (which is extremely rich and varied around this issue) overdiagnosis is less harmful than underdiagnosis. In the case of overdiagnosis, a *good* therapy team will still base treatment decisions on the actual problems to be solved, so there is relatively little harm. Whereas in the case of underdiagnosis, the child and family get no help whatsoever.

Your characterization of being "slapped" with an autism diagnosis makes it sound like diagnosis is always bad. In our case, it brought much-needed therapeutic help that we had sought for years. Not so much a slap, more like a support.

I am not saying rah-rah, let's diagnose everyone-- but I do think the likelihood of underdiagnosis is greater for gifted kids than that of overdiagnosis, and I think that if parents seek help from reputable professionals who are using evidence-based practices, the risk of harm from seeking diagnostic information is small.


My point is this: there is not "no consensus." There are now standardized instruments (most notably the ADOS) that let you get a handle quantitatively on the behavior presented by the child. Yes, it's a snapshot on that day, and yes, there is still some interpretation, but much less so than there used to be.

Nobody has to get their child diagnosed who doesn't want to, but stigmatizing diagnosis itself as a slap or a problem strikes me as not a very helpful position vis-a-vis parents like ElizabethN whose kids have problems that are not yet well-understood, yet real.

Very well said, DeeDee.

I was cautioned by more than one person about 'labeling' my son during the diagnosis process. Having him properly evaluated and diagnosed has brought nothing but positives to our family. He is now engaged in productive therapies, and receiving necessary supports at school. He's growing and learning amazingly quickly. My only regret is not having him evaluated sooner!

I don't have the background to speak to the autism issues, but agree with DeeDee above, and particularly about working with an autism center that's associated with a children's hospital. I've also found with my kids (and their different needs) that our pediatricians have been able to steer us to competent professionals and away from ideas or places that weren't worth looking into.


There's also one other thought I had when reading the comment (somewhere above) about overdiagnosis at 2 and some children "outgrowing" autism. My dd11 has medical issues that are also found frequently in a sub-group of children with autism, so I read a lot about that specific subset of children when I was trying to find help for her when she was very young (her issues started at around 2 years old). During that time (which was around 10 years ago now, so my "knowledge" is out-of-date, to be sure) - there was a thought that the children who were diagnosed around 2 years old after having a "regression" in development were not really the traditional form of autism but perhaps another form or an entirely different issue. This didn't mean they didn't have autism (or something else in common with each other), but how it played out over their next few years of life was sometimes very different than in children with "classic" autism.

The other thought that comes to mind (to my very un-knowledgable mind, so take it with a big grain of salt!)... interventions and treatment and opportunities for children with autism diagnoses are much wider now than they were when I was a child. Recognition and diagnosis has also most likely improved. When I was a child *MANY* years ago, autism meant a child who was so locked away inside their head that there was very little hope of them ever being functional in the world. I remember it being big news when either a parent or a dr took their child to the ocean for the first time and somehow discovered that what had kept their child so isolated in their own world was that they were exceptionally sensitive to sound. Things like that. Today we understand sensory issues relating to noise perception, touch, etc. So maybe what can look like "overdiagnosis" is really just heightened awareness and knowledge.

Best wishes,

polarbear

We aren't dealing with autism, but fwiw, have had the sam experience re our ds' and dd's challenges. I just would add one thing (also very positive) - the "label" my children have received (and the understanding of what it means) has meant a ton of relief for my children. Before they had a diagnosis, they had internalized that the "it" that was different about them was something inherently their fault or something that they should be magically able to get past since their peers didn't have the same issue. Understanding that they had a particular diagnosis and challenge helped them understand themselves better and helped them regain their self-esteem, which had taken a real hit when they were struggling and none of us understood why.

polarbear

I have a friend with a child in my DS's grade at his school. They were given an autism diagnosis by the school system for their child when he was around 3 and IEP was written. They say that now they can't get rid of it, and they do think that some of the "therapies" that the school has tried have been actually harmful, or at least not productive. The parents are not sure if he really has Asperger's or if he has severe ADHD and they are unable to afford private evaluations.
I'm sorry if you are offended by my saying "slapped with an autism diagnosis". I don't mean to imply that this is a horrific thing that's very negative. But if a child doesn't really have it, then yes, I do think it's a negative thing. No matter what the diagnosis or disorder, it's not a good thing to be labeled with it if you don't actually have it. Obviously if they do have it, then any supports/therapies they can get will be helpful and the younger they are started, the better. And even if a child doesn't really have autism, the supports/therapies MAY be helpful, but the child should be given supports/therapies which are validated by research for the actual disorder that they DO have whenever possible. So if a child really has an expressive language delay, being put into ABA therapy probably isn't going to be helpful and may be harmful. The problem arises when an early diagnosis is given, everyone assumes it is correct, and then it is not reconsidered later on as new evidence arises.

Hi, this is Tom, Elizabeth's DH (at least I hope I'm D :-) ).

Actually, I disagree about his speech fluency. His pronunciation is great. But to me he clearly has a problem getting words out. He will often start trying to say something with a couple of words, and then repeat the first couple of words with pauses many times before he gets the full sentence out. It's like he's trying to gather his thoughts or something and it takes a while. Sometimes it's like he's distracted by other things while trying to make the sentence.

I don't know if that is dyspraxia or not, but I wanted to make the clarification.

The school is not actually allowed to "diagnose" anyone with a disorder. The school's role is only to provide an educational evaluation, which assesses the educational needs only, not the overall picture of what's going on with the child.

It sounds as though in this case the school people overstepped their bounds (saying "diagnosis" where they should not) and/or got it wrong, or the parents have misunderstood the process. At any rate, the parents are members of the IEP team and can request meetings to collect data and/or change the plan.

The way to "get rid of it" is to convene an IEP meeting and change the stated reason for the IEP. One would probably need an outside evaluation to contrast with the school's. If the parents don't like the school's opinion, they are legally entitled to request an independent evaluation at the district's expense. (See Wrightslaw.com for details.)

There is no such thing as a permanent school record for kids this young.


Of course.


If the ABA team is worth its salt, not harmful, because ABA is targeted to meet the actual need (it should not at all be cookie-cutter or inappropriate to the particular child). That, of course, depends on the skill of the implementation.


Right. Pretty much every parent of an unusual child I know is hypervigilant about diagnoses, symptoms, and so on, myself included. And that's not paranoid; it's a sensible response to the reality that our medical system does not offer any kind of safety net for us. It's on us to get it all done.

I am not, FWIW, offended. It's just that I care very much about how these issues are discussed. There is a minefield of misconceptions out there that don't do anyone any good.

My 2 cents.

DeeDee

At the risk of incurring some flames, I gotta agree with this. Once you have an erroneous "label" at least where I am... Everything is viewed through that lens. Even normal behavior is often considered 'pathological' to support the lens. I have seen first-hand and experienced to certain extent what Blackcat cautions about. I do think autism (and ADHD) are dx here VERY EASIIY and I think a lot of learning disorders and anxiety resulting from un-dx learning disorders (like dyslexia, dysgraphia) go completely undiagnosed b/c they are much to quick 'slap' on a misdiagnoses of autism or adhd here. I could be totally wrong but it feels scary that way here. That's why I am really trying hard to get an OBJECTIVE look at my kid. If I were easier going, less intelligent or too busy to bother (or if I desired it), my kid would have PDD-NOS and ADHD dx, no problem. He would have had them years ago. He would never have been look at dysgraphia nor would he have been looked at for EDS. Now I have friends in other states who have children they truly do believe have some type of ASD and they have trouble getting the Dx (though all three did get it eventually). So maybe it is a geographical thing.

Well it feels like it. My kid's record is following him around and I'd love to be freakin' free of it quite honestly. And trust me, atleast around here clinicians are loath to take away dx. They tack new ones on to it readily though.

Huh. Nice to know I am not imagining things completely. I am not expert. I am not doing big studies, etc. It's just my experience here in my little corner of the world. But it definitely FEELS very much like I described. And, quite honestly, it feels very scary - walking the line of trying to "get" the "right diagnosis." And my DS has plenty of "labels" and sometimes it feels the more labels they pile on the more harm is done. I feel like NO ONE really sees HIM anymore. And it does FEEL like once you got it, you can't get rid of it, which can be very, very problematic in some cases.

Personally I think any diagnosis at 2 or 3 should be considered "provisional" and subject to later confirmation or disproof and this should be clearly stated. But people can grow out of things like asthma so why not ASD.

I understand that a diagnosis can be comforting but I am concerned that society seems to becoming less tolerant of differences - everything has to be explained by a condition instead of just being accepted as human diversity.

Exactly. People want a definite answer or diagnosis for their child's delays/differences at age 2 or 3 (or even younger) and I just don't think that's possible. It doesn't mean that interventions can't be started, but more research should be done on which cases/severity warrant which therapies and long-term outcomes.
I also have little doubt in my mind that we could have gotten a PDD-NOS diagnosis for DS at age 1-2. His speech was delayed, he wasn't really gesturing at age 1, he spent a lot of time by himself trying to figure out how things worked rather than interacting with people. NOw that he is older we can see he is dyspraxic and had some delays (probably also atyical brain development combined with giftedness/2e to muddy up the issue more), not autism. I suspect that the school would have written up an autism IEP (which they can do as an educational diagnosis) if I had pushed hard enough, because they were/are clueless about how to qualify a child using other disability categories.

ASD is not a disease like asthma, subject to inflammatory or healing processes. It's a neurological difference (disorder if you prefer).

Experts agree that one can "grow out of ADHD." I think it's only about 1/3rd( depending on the severity) - this is pretty well accepted.

I'm not sure I understand exactly what you meant by "comforting" but I doubt that any parent or person diagnosed with a disability finds it "comforting" to have a diagnosis. My experience has been that it's enlightening - leads to personal understanding and starts the journey to making sound decisions for therapies, remediation and accommodations. Having a disability isn't something anyone I've known really *wants* or would choose to have, but having a diagnosis and an understanding of that disability is something that most people I've known with disabilities appreciate and find helpful. I hope I'm understanding that and not mis-speaking, I'm not sure I've explained it well.

[quote[but I am concerned that society seems to becoming less tolerant of differences[/quote]

Call me an optimist but from what I've seen I think we're (as a human race) getting more tolerant - at least in the small corner of the world I've experienced.


All those explanations of conditions come from acquired knowledge, from learning more and more about our human condition. All that knowledge is helping people who in earlier days would have had a far greater struggle in life and not have perhaps been successful instead be able to live up to their full abilities. I've seen this in my dh's family - first with his father, who was never diagnosed with anything but was just known as "never talks" and "very difficult to talk to". Everyone who knew him just chalked that up to personality. Now that I've parented a child with an expressive language disorder, I have to wonder - was it his choice not to talk, simply his personality, or was there a person hidden behind the lack of voice who was much like my ds, a person with amazing and wonderful ideas to share with the world but no understanding of how to get them out?

Also in my ds' generation there are more than a few cases of dysgraphia/dyslexia. One of ds' cousins wanted more than anything to go to med school and would have made an *amazing* dr - full of compassion and oh so danged smart. Yet in school she could never achieve the scores on reading comprehension etc parts of exams that she needed to go to med school (she did very well on math/science and her profs in college all felt she'd be a wonderful candidate for becoming a dr). Looking back 30 years ago, she had a vision challenge when she was very young. During the time prior to it being corrected, she remembers going to remedial reading classes at school but that eventually stopped when her eyesight issues were resolved successfully. After she'd already graduated from high school, when my dd with vision issues started vision therapy and she heard about it, she found so many similarities in her own life and her own struggles with reading. But now she's an adult, independent, doesn't have the $ to go back and get a diagnosis for the purposes of retaking med school exams etc and she's moved on in life. She'll have a wonderful life, but wow, the world missed out on an amazing dr. It makes me sad just to think of it

The cool thing is - more and more children, today, in school and with vigilant parents at home - are having their challenges recognized and identified and they're getting help and accommodations. It's a *good* thing. Really!

polarbear

Except that there are quite a few people in the autism community who resent it being called a disability or disorder or something that needs to be helped or changed (at least the very mild forms of it.) http://en.wikipedia.org/wiki/Neurodiversity

I struggle with this even in terms of DS's DCD. Does it really matter if he's uncoordinated as long as he can function? Is it really to his benefit to make him go to physical therapy/occupational therapy to "fix" him? At what point do you let it go and just let the person be? What if he doesn't care if he can ever do jumping jacks? We make him learn it anyway? No easy answers. He's in PT and OT so obviously right now I'm taking the route of "intervention" and trying to do what I can, but is it really reasonable? Who knows. Another mom friend I have has a kid in junior high who probably has DCD and she never did any therapies or anything. He is not in sports but is happy and does just fine.

I just wanted to bump this post from my husband up to the top, since it was hiding in the buffer for a while and may not be seen by some people.

I'm finding the current direction of the thread very interesting, though.

Look up the Wikipedia page on DCD/developmental dyspraxia and see if he has other symptoms (like gross or fine motor issues). No one with dyspraxia is going to have all the symptoms, but if he has quite a few, it's worth checking into it. Some people with dyspraxia don't have speech issues at all or they are mild.

Thanks, I just went and read that. He doesn't seem to have any of the other problems. He holds a pencil correctly, and his drawing and letter writing is on par with other kindergarteners. He's not great at getting the tongue of his shoe in exactly the right spot or in pulling his underpants up without getting a bit of a fold at the waistband, but that may be more that he doesn't care or notice. :-) When he writes, he seems to be able to get the words onto paper as fast as he can write, so he's not slowed down in handwriting. It just seems to be in talking where he will start with a couple of words, pause, repeat them, again, and again, and then get more of his sentence out.

You can also look up "apraxia of speech" because some kids with apraxia don't have the motor issues, but if he didn't have any major speech delays, that probably isn't an issue. Sounds like it could be a fluency disorder though, more in line with stuttering. Whereas my DS has articulation problems and speaks slowly but doesn't stutter. Both are fluency problems.

This, plus what TomN contributed, sounds similar to my DS8. He was diagnosed last summer with oral apraxia as well as social communication disorder. We see the issue of story retelling in spades, despite the fact that he clearly comprehends what he hears and reads. (He will, for instance, act out a story as I read it) We also have issues with very slow response times, even when I can see on his face that he's formed an answer (e.g., "do you want chocolate or eggplant for dessert?" takes several seconds for him to spit out that he wants chocolate even though I can see him looking at the chocolate, for instance). Asking him what he did at school almost feels like a cruelty. He cannot answer it without about a minute of thought. Journal writing was also painful. He can write just fine, but a free form "put down some thoughts" was impossible.

DS also shows signs of the oral apraxia through inability to say complex words, particularly with multiple syllables formed in the same part of the mouth, as well as significant oral motor issues related to eating. It was hard to get the diagnosis, and harder to find a SLP with the right skill set to treat it. The one we have has done an excellent job on some of the issues, and has been unable to touch others.

I discovered last year that DS could retell a story 5-10 minutes after reading or hearing it, but not immediately after. We describe things as taking the scenic route through his brain. I'm not sure the speech therapy has helped on this point much (I asked her today to revisit this issue), but it did help to script him on what "retelling" means. I gave him a sequence of questions to answer, which helps by reducing the number of options of what to describe, but also seems to help in scripting the order of how to respond. We practiced for a month - first with written questions to read and answer after a 5 minute break, then fading the script and reducing the "rest" time.

We did go get another evaluation (on the school's request, we've done 3 autism evaluations, negative each time), and the above diagnoses came from a hospital team evaluation that constituted the child's 6th speech evaluation. We also ended up with an ADHD diagnosis. I know last year's teacher agrees, but no one, including this year's teacher, the principal, or us as parents agree (and when I finally got the report, all the surveys and rating scales). However, since we have some sequencing problems, boredom, and basic young wiggly kid issues, we have established a series of accommodations that fit the kid and got DS a 504. The 504 game him things like supervision during lunch time so he doesn't choke. Overall, I don't care if the ADHD is right or not, it is getting him what he needs.

No idea if you're dealing with any of the same issues, but hope something in here helps.

We have one like that at our house. I think there are multiple possible causes for this kind of verbal dysfluency, including but not limited to attention, motor issues, and sequencing issues.

(For that matter, there are multiple possible causes for retelling issues as well. Both my kids have that problem but, I think, for different reasons.)


This has been our family's position on diagnoses. They are absolutely obligatory both in the school and medical systems IF you need certain kinds of help. If the kid needs help, the label can often make that help available. In our case, I would rather have the help because the needs are real. If help is offered for the wrong need, we negotiate and investigate and try to get the whole team clear on what we see.

I do not share others' fear of labels-- a disability label is better than the label of "slow" or "stupid" for a child who operates at an unusual pace, or "bad" for a child with behavioral issues. Outliers are going to be labeled-- better IMO to have the correct name for what's going on and some control over the message.

DeeDee

Helped can be very different from changed. Sometimes social acceptance means recognizing that some people need more help than others, and I think most neurodiversity advocates acknowledge that having help available when needed lets some people live more independent lives.


We have struggled a great deal with this. DS11 has worked out his own opinion, which is very like Robison's referred to in the link above-- basically that if the issue is holding you back from doing things that would be good for you or things you want to do, it's a disability. If not, it's a difference. I see it as a bit more complex than that (since I'm the one who has to decide how to spend limited resources) but I'm not opposed to the distinction in principle, and I find it useful.

We try to respect DS's unusual qualities as long as they're not harming his present or future getting along in the world, and we work very hard on changing those behaviors that will get him fired from a job or prevent his having close relationships.

YMMV.

Glad you didn't feel thread-jacked. Feel free to take the topic back to what's actually useful for you.....

DeeDee

I do not share others' fear of labels-- a disability label is better than the label of "slow" or "stupid" for a child who operates at an unusual pace, or "bad" for a child with behavioral issues. Outliers are going to be labeled-- better IMO to have the correct name for what's going on and some control over the message.

DeeDee [/quote]
This is true and worth remembering for sure! Thanks for the reminder.

I agree. I also think it's helped my kids (as human beings) to know other kids who come "with labels". My kids have been in class and at camp with kids with ADHD, autism, dyslexia. My dysgraphic ds has a classmate this year who is also dysgraphic. I'm sure there are other kids with diagnoses that haven't been shared, but everything I've seen re the kids & families who are open about and share their diagnosis with the other kids - I truly believe it's helped give my children a good perspective on how we are all different as human beings and how that's ok. It seems (jmo) that the kids who have the diagnoses and who share them (just in the school situations we've been in) are kids who are included as part of the classroom "whole". The kids who do *not* have a diagnosis that is known to the other students in class stand out more because their peers don't have a context to put their differences into. Sorry I'm not explaining any of this very well. Basically, when my kids are in a class with a student who has autism or adhd or whatever, it's like just a part of who that kid is, akin to being in class with a kid who has red or brown hair - it's seen as part of who they are and everyone is different and that's ok.

polarbear

Are teachers telling the class that student X has ADHD and student Y has autism? I find that rather disturbing. If my DD ends up with a 504 plan for ADHD that should be something that's kept between us and the teachers, not announced to the class with the kids being aware of the "label".

My teacher husband had a student in high school who had Asperger's and could get upset enough to throw chairs. At the beginning of each semester the parent (with the child's knowledge although he would go to the library) would come in and give a talk about autism in general and how the class was all in this together and tolerance and his specific challenges and the strategies he and the teachers were going to use. She also gave the talk to the football team (he was a team manager). The football coach emphasized how he was a full team member and how he expected them to behave. The young man was also know to walk up to people and introduce himself...hi my name is and I have autism...so his dx wasn't really a secret.

By the end of four years, there was very little chair throwing.

This was the student and parent's choice. But you know even if they never disclosed his actual dx the teacher would have had to address the chair throwing and how not to set him off and student safety once chairs were flying...so you could talk around it "everyone has his or her challenges" or you can, with permission of course, give the challenge a name. I think the biggest factor really is school climate.

You see those videos where the middle school or high school kids give the child with disabilities the chance to make a basket or touchdown. There was one middle school one and the kids worked up this plan all on their own and didn't tell the adults. The boy running the ball stopped purposely on the one foot line and then they called a play that they had made up where the young learning disabled boy was given the ball to run in and they surrounded him to protect him. But the interviews of the kids was the kicker...the kids got it...they got inclusion, friendship, putting others first, working around challenges, everything. Some of the organizers got it when they were hatching the plan. Another kid who was in tears during his interview only got it after he participated in the plan. He admitted to the whole thing changing him.

I'd like to add while I do not "fear" an accurate label, I think the point some of us are making is that we fear is an inaccurate label. I know some feel and have experiences that any label accurate or not is helpful but some of us are very wary of that. I know I am very concerned about inaccurate labeling.

And yeah no teacher at our school is ever permitted to announce a students dx - tho one teacher at my sons clarified with the other students whether or not my son had a disability ...

Sweetie, what an uplifting and inspirational post! Thanks for sharing. This made my day.

I remember being in middle school and being annoyed daily by "hyper Helena". I mean I probably once in a while was a mean girl towards her. I wish someone had helped me as a middle school girl be more tolerant and helpful rather than annoyed and short with her because she just couldn't sit still and every movement was big and loud and she was disheveled and she was disruptive and distracting. But our school climate was conformity and not really compassion for a disability that we knew nothing about in 1978 (severe ADHD). She did have a bit of success on the school basketball team but it didn't change opinions.

If I could make amends with her I would try. I didn't bully her but I didn't include her or go out of my way to be nice.

That is lovely, Sweetie. Unfortunately, not everywhere is so accepting. I have a lot of "snots" in my area. Prior to my son's diagnosis (nothing even manifested until he was around three - he did just about everything early and he never had any behavioral issues AT ALL prior to school so we and others never had any reason at all to suggest he was anything but "normal" and advanced), I was in playgroups, a sahm in the neighborhood, SOME people (actually enough) in our area/neighborhood would talk about and behind the backs of those with children who had dx... and not in a pretty or a kind, or accepting way. They would do this in front of their own children and the toxic spirit trickles down. So for me, if my son has a disability that is not readily apparent I pretty much keep it to myself. Unfortunately my son's one disability anyway is kind of apparent since he needs a scribe and uses the computer more than others, etc. So they know something is up. I KNOW they talk. and I KNOW they speculate on what the parents did to cause the dx. But if I could keep it a secret until my son can make that decision for himself I would. I can tell you if he gets dx with ADHD it's certainly mild enough not obvious I will keep it private. WE do not need to be providing any more fodder for these people. If my son as gets older wants to share then that his prerogative and his information to share in the meantime I keep what I can private.

That's so encouraging. It's certainly the world I want to live in.

For some diagnoses, there is a very negative stigma. ADHD for example. A child might go home from school and tell their parent "Guess what, the teacher says Abby has ADHD". So if that parent doesn't know Abby and has a choice between inviting Abby and another child for a play date, who are they going to choose? The child that might be "difficult"? Are they going to encourage their child's friendship with a child that has a behavioral disorder? Probably not.
Teachers who have worked with kids for years in the classroom are completely ignorant about ADHD. So to expect a label to produce positive reactions from yet other people who have NO exposure to it is unrealistic. I tell other parents about DD's ADHD only if they know her well. People always seem surprised because she is probably one of the quietest and most well-behaved kids in school.

I know that is the right thing for some people.

With the young man my husband taught, there were very specific things you could do if you wanted some excitement and to see chairs being thrown about the room. Part of putting it out in the open was to explain that purposefully setting him off was not going to be tolerated. No one could say they didn't know.

I think you can build a climate that is accepting without disclosing dx...but in some cases people do find that disclosing is more helpful than keeping it hush hush. I think it depends on each situation. And privacy is the default setting, disclosure is optional.

Blackcat, I understand your concern. I do want to add though, that one of my ds's best, best friends has a dx of ADHD, and that has never once given me pause or made me wary of their friendship. So not everyone will have the viewpoint that concerns you.

I think everyone, every child, must have something, you know what I mean?

Absolutely. This is exactly what happens in my neighborhood/community. I was privy to these very incidents/conversations Friendships with "kids with 'isms'" (which are how the parents refer to these children) are discreetly and subtly but purposely discouraged. We do have a very very supportive small special needs community though...

We have had this experience. However, it can also be a screener that works to our advantage. If we contact a summer camp and ask if people with Asperger's are welcome, and give them some indication of DS's profile, and they are hostile or ill-informed, I know that he won't have a good experience there anyway. If they are warmly welcoming, unafraid, and seem already to have some sense of what accommodations could look like, it is more likely to be positive for him.

Kind of like only wanting to join clubs that actually want to have us as members.

I do chafe at the limits of inclusion, but we will keep trying to make our way.

DeeDee

Good post MON. Really good points. Thank you for sharing your experiences. It feels better not being alone in this - we have some of the same type of things it seems like - some people/teachers/aids treating him as though he is cognitively impaired (this REALLY burns him up - he'd rather be treated meanly believe it or not), some just doing the negative halo thing - seeing him negatively in general, etc. It's hard.

I have to say the best people are sort of outside the school. So odd, I guess they are just paid to do a job and they get it done in a way that makes the kids want to come back. Like his math place - they haven't got the foggiest clue what dysgraphia/EDS is I don't think. They just meet him where he is and accommodate the weakness almost seamlessly and it's awesome. Same thing with the chess teacher. And his current swimming instructor. It's weird. I guess cause those are one on one and it doesn't matter so much how they get him wherever they are taking him it just matters that he gets and is happy and feeling good along the way. It's hard to explain but it feels like they see just him. I just wish school as whole could be that nice!

Absolutely-- I'm not saying I enjoy discrimination. I worry a great deal about how on earth DS will make it through a job interview.

Something like 13% of adults with autism have non-sheltered jobs. It's a very low number.

I'm just saying that right now, we are being selective about environments and still protecting DS from those where we think he won't be successful due to others' biases. I imagine that our college search and his eventual job search will have some of that flavor. Sad that it still must be this way.

DeeDee

Here is that football story

http://www.huffingtonpost.com/2013/10/31/olivet-middle-school-football-play_n_4182924.html

For us, it wasn't an issue of getting a diagnosis/label, or not. He was ALREADY BEING LABELED. Kids with issues get judged and shamed and labeled things like "unruly" "violent" "anger issues" "behavioral problems" "stupid" etc, etc, etc. Having a proper diagnosis allowed people to see my son in a different light.

Hey moomin, I'm so glad things have improved for your DD!

You can count me in as someone who has concerns about diagnoses and feels it is a confusing area. Not for all children, but for some. Mind you, we were the ones considering if DD9 had ASD in some form, and had professionals tell us no, but I feel we could easily have had someone else tell us yes, because she was very gray area. These days, she really does not look ASD. Similarly, we had one teacher voice concerns about attention, others insist vehemently that they see zero attention issues, another say "There's something, but I don't know what," (this teacher also said "Oh no, not ASD" when we asked if she thought it might be ASD) another say "I think her giftedness is causing behavioral problems," and a young preschool aide accused us of ignoring that she was autistic. She at one point received a depression and anxiety diagnosis, but was borderline on those measures as well. She was tested for auditory processing problems and aced the tests, and also aced an attentional screener on the computer. She also has some new concerns popping up that I can only describe as Differences That Could be Pathologized But Also Maybe Not.

At this point, I feel that any one label would be wrong for DD, but that she is neurologically interesting and extremely sensitive and high strung. Socially and academically, she is having no problems right now. At home, things have improved quite a bit since we put her on rhodiola. She has also seemed to mature somewhat. It could be a lull. We have those here. I fully expect further surprises, but I have kind of given up on finding out the One Thing that is up with her. We will cope with issues as they come up.

I didn't mean to offend. I think I would be diagnosed with something if I went to school now. And I really do think if someone had said "you are hopeless at ball sports because you have no 3 D vision" or "your inability to predict when people are going to lose their temper id due to the fact you can't interpret facial expressions very well" or actually you can't help not fitting in because of whatever reason it would have been comforting. It would have meant that it wasn't because I was an unworthy person etc or just didn't try hard enough at sport or whatever. In fact when someone suggested I had ASD it was really comforting.

When I got Ds6s test results it was a relief.

Society is more tolerant of most things but there are, here at least fewer work opportunities for the non cookie cutter employee.

The thing I was trying to say with asthma and things like autism is that as a severe asthmatic I tend to think that people who grew out of it were misdiagnosed.

ElizabethN, just wanted to send you positive thoughts for tomorrow's meeting.

If I were in your shoes, I would pursue an evaluation by a private SLP. It's great that the school is providing the services your DS needs but he could benefit from additional therapies and if your insurance would pay for that, I'd prefer to have that option than not:

http://www.asha.org/PRPSpecificTopic.aspx?folderid=8589934980§ion=Roles_and_Responsibilities

My dr explained to me that my son had an area of his lung when he was small damaged by pneumonia His dx after that was RAD (reactive airway disorder) and not full blown asthma. But he has outgrown it because he has added lung mass as he has grown so the section of lung that was say 50% of his lung when he was four is now only (making these percentages up) 5% of his lungs now as a teen.

Does that make his history of asthmatic cough or wheezing any less real? It wasn't as classic a case of asthma as I have heard of and not as hard to manage. But it did exist and wasn't misdiagnosed. I sure am glad to have the nebulizer years behind us.

Sorry your asthma has been so hard on you...I can see where you would feel asthma...you don't know what real asthma is, you had a walk in the park compared to real asthma.

ElizabethN, I don't have any personal experience with Seattle Children's, but they have two free events this month, Autism 101 & 201. The events may provide an opportunity to meet staff and network with other parents, so you'll have a better feel if SCH is the right facility for you.

http://theautismblog.seattlechildrens.org/classes-and-events/

I am glad your child is better too. And aware of how stupid it is.

What I was trying (badly) to say is that you treat what you have. And sometimes you don't know whether the problem goes away because of the treatment or because it wasn't what you thought it was. But you still have to treat it - you can't wait. And knowing what you are dealing with is always better though not always easier.

And now I am going to stop digging my hole before it gets too deep to climb out of and wish the OP all the best.

blackcat, I just wanted to clarify that my children's teachers have *not* told their students that certain students have ADHD or autism or other disabilities - my kids know about other student's challenges because either the kids themselves have told their peers or because a parent and/or the child has talked to the class as a whole about it (typically at the beginning of the school year - and this happened more often in elementary school - in middle school the kids tend to handle telling peers on their own). Not all the kids at their school who have challenges tell others - my dysgraphic ds, for instance, as far as I know, has told absolutely *none* of his peers ever. It's something I honestly wish he would do because I think he'd find acceptance. It's pretty obvious he has a challenge with handwriting both because he uses keyboarding for almost all of his classwork and from seeing what his handwriting samples look like compared to other kids in his class.

As a parent, I know of quite a few kids challenges simply because parents talk to each other - not gossip as in "did you know Suzy's dd is allergic to shellfish" but because parents of the kids with the challenges have told me about it for whatever reason. I happen to know another mom of a dysgraphic student in my ds' class simply because the mom mentioned something about it casually when several of us class mom's were having coffee. This is the first person in "real life" (ie not online) outside of my family that I've known who has a ds with dysgraphia - I'm glad she mentioned it. I occasionally will mention my ds' dysgraphia in conversation with other school parents, and found another mom of a younger student who also has dysgraphia. I wasn't looking for that type of connection in either case - but I am so glad I found the first mom, and the second mom was so glad she found me.

Re playdates, very few parents I know would specifically exclude a child from playing at their house because they have ADHD or are on the autism spectrum. The way we decide who is invited for playdates at our house is... our kids decide who they want to invite and they are invited. We've had on occasion children over who were annoying in terms of behavior... but they weren't kids with ADHD or autism or any specific kind of challenge - they were just kids who were not well-behaved kids. I'll be honest, I do not get excited about inviting those kids back, and neither do my kids... but fwiw... I haven't seen any correlation between kids who are not fun to have over on playdates and kids with autism/ADHD.


My kids' disabilities and 504/IEPs etc have *never* been announced to the class by a teacher, and neither have other students. From what I've seen the school staff does everything they can to prevent that info from becoming public knowledge - to the extent that when I've volunteered in a coaching position at one school I was not told which kids had 504 plans and I technically violated one simply because I didn't know it existed. I think it's important to realize though that fellow students can figure out for the most part which peers are receiving extra help (either push-in or pull-out) and which kids get accommodations in the classroom and on testing. My ds worried about this a ton when he first was given accommodations - he was so scared of having other kids see him as "different". But the thing was - it really isn't a big deal to the other kids in class. It took him literally months to get up the courage to take his laptop to school and use it in 4th grade... he was so worried about what all the other kids would say and what they would think and that they would think he was "wierd" because he was doing his schoolwork differently. When he finally opened it up in class the first time, maybe one or two students stopped by his desk to see what was up and said "cool!" and that was it.

I don't intend to sound pollyana about the reality of people with disabilities facing discrimination and misunderstanding from others - the only point I was trying to make was that in my observations of the school environment my kids have been in - most students have been very accepting of other student's challenges and disabilities when they knew about them. When students were exhibiting behavioral or other challenges and their peers weren't aware the student had a disability... those students seem to have more difficulty fitting in and being included.

polarbear

When DS was in 3rd we found that other children were afraid of him-- he was unpredictable and got upset about things that didn't bother other people. The brilliant and loving teacher decided we had to do something. With our explicit permission and DS's, she taught the kids a little bit about autism and he talked a little bit about how it is for him. This event (lasting probably less than an hour) was transformative-- once the other kids understood how it is for him, they weren't afraid of him, which vastly improved the atmosphere in the classroom and his peer relationships.

It was transformative for DS, too, to know that his difference could be named, understood, and accommodated.

I wouldn't do this with just any teacher, or in just any situation. But in our particular setting that year, it meant a lot.

DS is also quite "out" about his autism now. We try never to let him use it as an excuse, but he does use it as a way of explaining his experience. He owns his dx. That will no doubt have bad aspects, if he tells the wrong people and they use it against him, but he has to have some ownership of that information, because the autism is not going away.

But yes, if school personnel disclosed IEP details without my permission, I would be upset. That hasn't happened.

DeeDee

I understand your point polarbear, and I think there is a benefit to explaining disabilities in some cases in terms of the children. It's the parents that are a problem. Once a disability is known, things are seen through that lens. People expect the worst or people look for behaviors that confirm their small knowledge of the disorder. That's why I only tell people who already know us. There's a big difference in how a person would perceive a child with something like Developmental Coordination Disorder or a learning disability like dysgraphia vs. ADHD. People hear "ADHD" and immeditely think "hyper" or "impulsive" and those characteristics are indeed a part of the disorder. I bet that teachers go through their stack of files at the beginning of each school year and sigh when they see kids with ADHD 504's or IEPs. "Great, I have 5 of them this year. Last year it was only 2." Then they expect the child to be difficult before the child even gets there. That's why I'm wary of even writing a 504 for DD. Her problem is processing speed and she has NO problem behaviors in school but when teachers see the 504 they are going to expect more than just processing speed issues. And if she went there unmedicated, she would indeed be a behavioral problem just like they would expect.

Blackcat, I'm sorry your experiences have been like this.

We have had some teachers like that, and I remember those years with horror and regret.

We have also had some expert teachers who not only welcomed our child, but made an enormous effort to meet that child where he was, really understand him, and help him grow. I remember those years with gratitude.

Our DS11's current school includes staff who have really enjoyed and embraced him in ways that are not limited to his disability.

We have some neighbors who have made us part of their world and enjoy DS for who he is. Not all, but some.

I'm not saying it always happens in this rosy way, only that it's possible.

So far no teacher has behaved like that in terms of DD, but that is because she does not have a 504/IEP and they don't know anything about it, other than what I've told them.
The teacher last year seemed to think I was just making it up, because DD acted so "normal" in her class.
But I have worked in a school with teachers and they gossip and gripe about kids and families in the lounge. There are some teachers who are very good and love all kids. But I would not say the average teacher is free of biases about disabilities, or that they "embrace" kids with challenges.

ITA.


I don't think you are in a hole, puffin. Just saying.

IEP meeting went fine. They are not at all concerned about the autism-related stuff, to the point where I think maybe we'll wait and bring it up with his pediatrician at his annual checkup, instead of right now.

He'll be doing 30 min/week of time with the SLP working on retelling/summarizing, and 4x30 min/week of special education working on social skills. Goals are to have him able to retell a story 4/5 times one year from now, and to be able to join play and/or invite others to play with him at least 3/5 times.

Right now I'm happy with the services he's getting, pending seeing how it all works for him. Obviously if he doesn't make progress, we'll have to change it up. But I feel like the people at the school are professional and really want to help him, so I am hopeful that it will all work out well.

Elizabeth, that's awesome.

I am so impressed with the pro-active qualities of your school, that they are dealing with the issues they see right away and on their own initiative. Would that more were that way-- it's how it's supposed to work!

Well done to you and the team.

Well, I did have to initiate the request to evaluate him. But since they responded to that request, they have been super accommodating and really want to help. And for that matter, I think they could have blown off my request, and they didn't - they brought in a small army to evaluate him. (OT, SLP, counselor, special ed teacher, regular teacher)

On the autism issue, they pretty much told me that it wouldn't change what they provide at all if we got an autism diagnosis - for any kid, they evaluate the behaviors and how they're affecting his education, and act accordingly.

Also as it should be. If new issues come up, call another meeting, but until then, watch the progress and appreciate those who are helping.

For me, the reason to pursue the autism evaluation as you can would be that it may open helpful avenues and strategies outside of school.

We ended up being pretty intense about DS's education for a while, with a serious therapy program outside of school-- but knowing he had autism also helped us choose fun activities that we knew would support social skills development, even at the expense of other activities that we had always thought we would place a child in. Knowing what's up helps you make the right investments, we think.

Anyhow, glad that meeting is behind you!

This may be a false belief, as the U.S. Department of Education, in a factsheet dated July 2009, describes Statewide Longitudinal Data Systems which have been funded through grants since 2005: emphasis added

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The US DOE's 2009 SLDS Factsheet is archived on the WayBack Machine - https://web.archive.org/web/20210809095250/https://www2.ed.gov/programs/slds/factsheet.html