ASD "Diagnosis" from school - I don't agree Update post#13 - Mothering Forums
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#1 of 17 Old 05-19-2012, 08:45 PM - Thread Starter
 
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To be clear, I know there is SOMETHING with DS. I've read up on ASD here and on other sites. DS has several "red flags" for ASD, but something doesn't fit about it. I know that misdiagnosis is not unheard of and I'm worried that if I let it be, DS won't get what he needs. Part of me wishes I could be okay with an ASD Dx because then we would have something to deal/work with. But it doesn't feel right. Any thoughts/advice/questions? I'm on the tablet, so I'm keeping posts short-it doesn't do these online word processing things well.


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#2 of 17 Old 05-19-2012, 10:49 PM
 
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I know that misdiagnosis is not unheard of and I'm worried that if I let it be, DS won't get what he needs.

 

 

Why don't you think he'll get what he needs? My experience was that a dx was the first step toward the school trying different things to figure out what would work. Its called a spectrum for a reason, and in some ways, it's a really vague diagnosis. It's also a bit of a golden ticket in terms of accommodations.

 

Is your problem that you think they are missing something that they need to know in order to help? If so, have you checked into a private evaluation?

 

Or is your problem that it freaks you out that the "A" word was used?  I reached a point where I truly wouldn't have have cared what labeled they used, if it meant that the could try to figure out what would reach my child.


but everything has pros and cons  shrug.gif

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#3 of 17 Old 05-20-2012, 04:21 AM
 
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Hi my son had the kitchen sink thrown at him when it came to labels-everyone who looked at him saw something different-in the end i thought he had multiple personalities. I just knew he needed help and followed the process-we lost some of those labels over time but he did get help and has thrived. Once he is in the system he will get looked at, dont worry about them missing something, try to think what they could be missing and tell them, even if you are vague just let them know your concerns and fears.

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#4 of 17 Old 05-20-2012, 09:09 AM - Thread Starter
 
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That's what I needed to hear: that the specific label won't be "defining" him for treatment. I don't mind an autism label. Like I said I wish I did believe that it was ASD because I would know what it is. Not knowing is more stressfull to me than any Dx would be. I just don't see aspergers being the problem (that's what they are saying). I think it's partially SPD, which I know is also ASD. I just think there's something else going on. But if having a Dx is more important than what the Dx is, I can work with that.

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#5 of 17 Old 05-20-2012, 11:26 AM
 
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Originally Posted by Wolfcat View Post

To be clear, I know there is SOMETHING with DS. I've read up on ASD here and on other sites. DS has several "red flags" for ASD, but something doesn't fit about it. I know that misdiagnosis is not unheard of and I'm worried that if I let it be, DS won't get what he needs. Part of me wishes I could be okay with an ASD Dx because then we would have something to deal/work with. But it doesn't feel right. Any thoughts/advice/questions? I'm on the tablet, so I'm keeping posts short-it doesn't do these online word processing things well.

 

I believe than you need to agree in writing to categorize him as Autistic for special education services; this category makes available services that he might not otherwise qualify for. My ds barely qualifies via their evaluation but what their conclusions are close to what we had done privately, and he has access to more services this way.

 

I agree with this:

try to think what they could be missing and tell them, even if you are vague just let them know your concerns and fears.

 

If you disagree with their evaluation you can request an IEE; if you are able I would do a private evaluation anyway--it isn't a good idea to rely on the school's assessments. Our hospital assessment also included an ability/achievement IQ-type test which was helpful in preempting any questions on his intelligence.

 

I also recommend reading "The IEP from A to Z"; you may not only get some ideas for his IEP but you may find things in the examples that fit your ds but the school isn't really addressing.

 

Independent Education Evaluations: What? How? Why? Who Pays?

Independent Evaluations: Must Parents Select an Evaluator from the School's Approved List?

How Can We Get an Independent Evaluation (IEE) by ...


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#6 of 17 Old 05-21-2012, 04:17 AM
 
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My oldest son was diagnosed with autism at age 3. If DH and I hadn't been in denial, he could have been diagnosed at 2--and started intervention a year earlier.

That said, once he did get the label, the benefits of the label far outweighed the problems.

Basically, the only problem was that some teachers taught the label, not the individual, based on misconception, or lack of imagination; they couldn't see the potential, or they'd see a typical behavior or problem where none actually existed, because they were focused on the label.

We were able to access speech therapy, OT (he had vestibular issues), help in school, help at home, etc., and what a difference it made!

We did have to be VERY on top of things, both to avoid things that we felt were not right for him (ABA, for example, which is considered the gold standard for autism, but was wrong for him), and to access simple things (we had to call an IEP meeting at school JUST to get the teacher to let him use graph paper for math--but without the label,and therefore the IEP, the school would not have allowed him to use graph paper--go figure).

There is an enormous amount of hope and help out there, and it isn't always where you'd expect it.

Our child "lost" the diagnosis in middle school. He is now an honor student without an aide, has many friends, plays in the school orchestra, is very involved with school and community orchestras and theater productions, and is a black belt in Tae Kwon Do.

No, we don't believe he was misdiagnosed--remember I said we were in denial? He ended up being diagnosed 5 times because we didn't want to believe it the first time.

We did eventually stray from mainstream medicine's approach to autism and we flatly refused all psych/ADD medications that were offered. We did not chelate or do homeopathy, either, but we did stop vaccinating--he had 2 severe reactions to vaccines that initially were claimed by the doctors/nurses to be a "coincidence;" all I can say is, if I'd known then what I know now, we'd have stopped a lot earlier. Gluten/casein-free made a huge difference, too.

Hope that helps!
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#7 of 17 Old 05-21-2012, 08:54 AM
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Schools don't give a medical diagnosis.  The school determines if the child is eligible for services in one of 8 categories, autism is one of the categories.  So the school is just saying, "He is eligible for services in this category."  I say accept the services!  The autism services are usually speech therapy, social skills, occupational therapy, individualized instruction at school.  These services will all help your child.

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#8 of 17 Old 05-21-2012, 03:28 PM
 
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I think this is a really complicated issue.  I should be clear that I am coming at this from someone whose DS was misdiagnosed by Early Intervention and whom I think suffered because of it. 

 

I was very much like you in that I thought it was possible DS was on the spectrum but that didn't seem exactly right.  There were enough confusing things going on that an ASD diagnosis just didn't explain.  We went through early intervention and they gave us basically an "ASD-like" tentative diagnosis and all the services we got from that point on were based on that.  The reason this was a problem was exactly what Taximom5 mentioned.  We eventually found out (and have now had 4 different experts confirm) that DS has a severe language disorder (which can look very much like ASD to someone not trained to look for those kinds of things).  We eventually pulled DS out of the special ed preschool he was in because they would not address his specific needs and ended up working with him in ways that were not appropriate for his diagnosis. 


Many (not all!) teachers have a list of things to work on with kids on the spectrum.  They also have a set idea about the right methodology.  In our case, this caused a series of problems.  First of all, they spent a good deal of time "working" on things that were simply not a problem for DS.  So, for example, eye contact.  Our son always had fantastic eye contact and their constant, somewhat aggressive demands for eye contact actually reduced his eye contact for a while.  This also applied to his therapy time.  So, they spent a lot of time working on social skills when he actually wasn't behind in that area. 
 

I would have been totally fine accepting an ASD diagnosis if it was accurate.  But, when I saw what they were focusing on and I questioned it, I got a lot of very negative push back.  I know many parents can have a period of denial and I know that's what some of the folks we dealt with thought was going on.  It wasn't until we have a developmental pediatrician and a child psychologist emphatically diagnosing a language disorder that the preschool seemed willing to listen.  And even then, the preschool used a non-play based, traditional ABA approach which can be VERY bad for kids not on the spectrum. 

 

I DO think its important to get intervention going as early as possible no matter what is going on but I also really believe that you need to advocate strongly for your child.  If they give your child an educational autism diagnosis, just make sure that it means the types of services you are getting are actually addressing the specific needs of your child.  I would also highly encourage an independent evaluation with an expert who can help you really figure out what is going on. 

 

Hope that helps!

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#9 of 17 Old 05-21-2012, 07:12 PM - Thread Starter
 
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Originally Posted by Taximom5 View Post

My oldest son was diagnosed with autism at age 3. If DH and I hadn't been in denial, he could have been diagnosed at 2--and started intervention a year earlier.
That said, once he did get the label, the benefits of the label far outweighed the problems.
Basically, the only problem was that some teachers taught the label, not the individual, based on misconception, or lack of imagination; they couldn't see the potential, or they'd see a typical behavior or problem where none actually existed, because they were focused on the label

If you don't mind, would you share some details about the denial stage. I'm trying to be very careful about not falling into denial, but it's hard to know when your gut is right and when it's just a gut reaction.

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I think this is a really complicated issue.  I should be clear that I am coming at this from someone whose DS was misdiagnosed by Early Intervention and whom I think suffered because of it. 

 

I was very much like you in that I thought it was possible DS was on the spectrum but that didn't seem exactly right.  There were enough confusing things going on that an ASD diagnosis just didn't explain.  We went through early intervention and they gave us basically an "ASD-like" tentative diagnosis and all the services we got from that point on were based on that.  The reason this was a problem was exactly what Taximom5 mentioned.  We eventually found out (and have now had 4 different experts confirm) that DS has a severe language disorder (which can look very much like ASD to someone not trained to look for those kinds of things).  We eventually pulled DS out of the special ed preschool he was in because they would not address his specific needs and ended up working with him in ways that were not appropriate for his diagnosis. 

 

I would have been totally fine accepting an ASD diagnosis if it was accurate.  But, when I saw what they were focusing on and I questioned it, I got a lot of very negative push back.  I know many parents can have a period of denial and I know that's what some of the folks we dealt with thought was going on.  It wasn't until we have a developmental pediatrician and a child psychologist emphatically diagnosing a language disorder that the preschool seemed willing to listen.  And even then, the preschool used a non-play based, traditional ABA approach which can be VERY bad for kids not on the spectrum. 

 

I DO think its important to get intervention going as early as possible no matter what is going on but I also really believe that you need to advocate strongly for your child.  If they give your child an educational autism diagnosis, just make sure that it means the types of services you are getting are actually addressing the specific needs of your child.  I would also highly encourage an independent evaluation with an expert who can help you really figure out what is going on. 

 

Hope that helps!


I got the ADOS summary today and read it over. Again, I felt that there were so many things that were missing from their observations. The teacher's evaluation pegged DS at severe in all categories but one. I can't even touch on that too much because of the UA rules. irked.gif But suffice it to say, DS has said that the teacher told everyone to not be his friend because he's bad. This is the same teacher that thought an appropriate punishment for a 5 yo not paying attention in class (where he's already out-learned everyone) was to have him run a soccer field without stopping all during recess. censored.gif

They also said a lot about his imaginative play, which apparently isn't imaginative ENOUGH. Never mind that he's always got superpowers, or is a superhero, or the cat's gramma (don't ask wink1.gif), etc. but I guess they didn't see that part.

They also focused a lot on eye contact and his tendency to move in a jerky/clumsy fashion. DS was born with exotropia (kinda like lazy eye without the wandering part - walleye, I think it's called). It wasn't fixed (surgically) until he was 11 mo. Then he had to get another surgery. Then he needed glasses at 2.5 yo. He was very slow with developing his movements and he doesn't depend on visual cues a lot of the time, but I thought that the eye issues covered that one pretty clearly.

 

My problem is that I can find another reason for all the stuff they listed. But I don't want to get caught up in "excusing" behaviors. I'm pretty darned sure that DS has SPD, which is why I want to see what the ADOS team says (in person) before I make a huff. They keep throwing "Aspergers" around at me, but I haven't seen it on any of the paperwork. I don't know how differently they would approach SPD vs Aspergers, so maybe this is a mountain/molehill issue.

 

I don't know. I've literally got so much going on in my life right now, I just want to hide in a hole for a while and see what goes away.


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#10 of 17 Old 05-21-2012, 08:03 PM
 
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I think of special ed services (anything covered in an IEP) as being surrounded by a fence with many gates. Each specific diagnosis is a gate in. But once you are in the yard, it doesn't much matter which gate you came through. Theoretically at least, all services are available, and could be written into the IEP. Remember, that stands for INDIVIDUAL Educational Plan. YoungSon's school diagnosis was for speech. It was clear his behavior was downright weird, but he didn't meet the school criteria for any other specific diagnosis for years. Despite having a medical diagnosis of PDD-NOS, and several others.nut.gif Still, I was able to write in all sorts of accomodations that had nothing to do with speech. And he did not participate in speech therapy at all after a couple years.

 

The medical dx of ASD, and the school's dx are 2 different things. A developmental pediatrician would be the right "expert" to make a diagnosis if you need one. Don't lose too much sleep over what the school wants to call it.
 


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#11 of 17 Old 05-22-2012, 06:12 AM
 
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My problem is that I can find another reason for all the stuff they listed. But I don't want to get caught up in "excusing" behaviors. I'm pretty darned sure that DS has SPD, which is why I want to see what the ADOS team says (in person) before I make a huff. They keep throwing "Aspergers" around at me, but I haven't seen it on any of the paperwork. I don't know how differently they would approach SPD vs Aspergers, so maybe this is a mountain/molehill issue.

 

I don't know. I've literally got so much going on in my life right now, I just want to hide in a hole for a while and see what goes away.

 

I'd be concerned too, considering what his teacher has been like. I would consider giving the eval team any medical documents you think they should consider.

 

You don't have to sign anything that says you agree with the conclusions of the eval if you don't. You can request a copy of they eval prior to the meeting where it is presented*, and you can request to reschedule the meeting if you feel you didn't have enough time to prepare.

 

It would be a good idea to read the whole document, but I think what seems most relevant to you starts on page 19:

 

 

TITLE 92 - NEBRASKA DEPARTMENT OF EDUCATION

 

You could also contact an advocate:

Nebraska Advocacy Services : Resources : Legal Resources

 

*The the psycho-educational evaluation is an education record, access by parents prior to an ARD/IEP meeting is not governed by personal policy but by federal regulation 34 CFR 300.613 Access rights.


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#12 of 17 Old 05-22-2012, 12:49 PM
 
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Well, my first reaction is to get that teacher out of the picture!  If she did actually say no one should be friends with him and did make him run for extended periods of time I would file a formal complaint with the school.  Totally inappropriate and NOT someone you want helping guide the direction of your child's education.

 

Regarding denial - I went through a very serious depression feeling like I was in denial but just couldn't see it.  I was scared because so many people were telling me DS was on the spectrum and I just couldn't accept it because it just seemed wrong.  If I hadn't taken him to the dev ped, I am pretty sure he would have an ASD diagnosis because its very hard to listen to your gut when many "experts" are telling you different.  I don't have an answer for you, but I do think you should be willing to question your own position pretty closely.  If you examine it and STILL feel like there is something not right, then I would keep looking for answers. 

 

I know many people feel that a diagnosis doesn't really matter as long as a child is getting help but I actually feel like we didn't come up with the RIGHT road map for our DS until me knew what was really going on.  He has a language disorder so now we know we have to focus on that above all else since it is the root cause.  Without that knowledge, we might still be working on the wrong things.  So I guess I would say that, if you do think something is going on, you should really try to figure out what is up. 

 

If I were you, at this point I would list what I see as potential issues that I would want to work on.  Then think of the kinds of help you think would address those issues.  That can be the foundation for what you think would be a good IEP.  If the school disagrees, ask them why.  Closely examine the issues they believe should be focused on and, if you don't agree, follow up with them.  Don't be afraid to be an aggressive advocate (you don't have to be mean, its possible to be firm without being rude). 

 

So, for example, in our case the preschool listed that DS would be able to sit for 20 minutes during story time in their proposed IEP.  Well, first I don't think it is developmentally appropriate to expect 3 year olds to sit for 20 minutes.  But beyond that, this is a great example of working on the symptom not the cause.  DS won't sit for a story because he doesn't understand it.  So yes we could "train" him to sit still and "listen" but what we should really be spending time working on is his comprehension.  So I would much rather that IEP goal be about working to increase his comprehension of basic words.  Hope that distinction makes sense?

 

Anyway, I also think the ADOS is a terrible test.  Kids who are not as complaint get higher scores.  Children with language disorders are regularly misdiagnosed by that test.  If you think they school eval is missing something or misunderstanding something about your child, say that to them!  Talk to them about your concerns.  If they respond well, then great.  If not, then you have rights and should work with an advocate to make sure your child is getting the kind of help you want. 

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#13 of 17 Old 05-31-2012, 10:24 PM - Thread Starter
 
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Update: DS is listed as "meeting the requirements for autism spectrum" and outlined an IEP. They will be focusing on his social and empathy skills and "perspective", which I am happy with. I made some suggestions about how to approach the "lessons" in the IEP, such as using role-play to appeal to his kinetic learning tendencies. They added that in. They all seemed very open to what we had to say, not just "talking at us˝. So, I am very hopeful about this.

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#14 of 17 Old 06-01-2012, 07:13 AM
 
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glad to read the good update!


I just wanted to add, that (as far as I know) SPD isn't one of the categories that qualifies a student for an IEP.  I know of several kids who get OT as a related service due to a related disability (ASD and ADHD are the two that come to mind right now) and that OT is able to integrate sensory stuff into her treatment plan, but the students wouldn't have been able to get this services with "just" an SPD dx from an outside doc (and the schools do not give that diangosis)....so hopefully the DX you were given will be the ticket of admission to get whatever specialized  help  your DH could benefit from.

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#15 of 17 Old 06-02-2012, 10:53 AM
 
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glad to read the good update!


I just wanted to add, that (as far as I know) SPD isn't one of the categories that qualifies a student for an IEP.  I know of several kids who get OT as a related service due to a related disability (ASD and ADHD are the two that come to mind right now) and that OT is able to integrate sensory stuff into her treatment plan, but the students wouldn't have been able to get this services with "just" an SPD dx from an outside doc (and the schools do not give that diangosis)....so hopefully the DX you were given will be the ticket of admission to get whatever specialized  help  your DH could benefit from.

 

SPD (which isn't a stand alone diagnosis) could be covered under the OHI category (other health impaired); you don't need a specific diagnosis to receive services (but it's easier). My ds was initially categorized as OHI under IDEA to receive ST for social reciprocity, pragmatics, and articulation issues with "s" and "z." He did have an ADHD diagnosis at that point, but ADHD isn't one of the diagnoses listed in IDEA and isn't particularly relevant to his speech issues.

 

Being categorized as Autistic under IDEA (which my ds now is) apparently does open a couple specific additional services, though I forget what they are.


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#16 of 17 Old 06-03-2012, 06:35 PM - Thread Starter
 
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So, today I realized something they said in the IEP. One of them said that my parenting techniques are probably why D's has done so well up tip now. ... That's a pretty big complement, I think. I shall take some comfort in that apparently I haven't hindered ds's development. :D

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#17 of 17 Old 06-07-2012, 09:38 PM
 
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That is a big compliment.

 

If autism does not feel right, look at the list for the the diagnoses that will qualify for special education services and see which one, if any, fit. Our dd was diagnosed with autism (asperger syndrome) - yeah, that's how they put it on the school paperwork.  It may not be the correct diagnosis, and I often worry whether OHI, or other health impairment, would be a better fit.

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