Confusing late talkers with autism spectrum disorders

[KirstenB]

My DD took the ADOS, that is the one they said she was not on the spectrum???? That is why I am so confused by all of this. I was ecstatic when I found out she didn't fall in the spectrum on the ADOS but now I am left with what bookwormde calls "alphabet soup" and no one to say what definitely will help her. They are just stabbing in the dark. And the Dev. Pedi that was SO HARD to get into (who is high up in Any Baby Can here) basically will see us once every 6 months and does nothing but adjust her meds (and charge me $550 for the visit)!!!


Also, I did go to the public school at the advice of our OT and the principal told me they do not initiate any 504 or IEP's until school starts and the techer discovers a problem. How do I reply to this? I thought of taking all of her medical test records to the school??? Any recommendations? I asked them to put her in social skills group and they agreed but that's about all they will do. This school is rated "exemplary" but we are in a small town with people who are probably not too familiar with these issues.

Thanks!

I don't have experience with trying to get an IEP for a "school-ager". Our dd went straight from Early Intervention into Special Ed. preschool. However, I did bring all my documentation from dd's evaluation at UVA Children's Hospital to the initial meeting at the school. They did their own testing, and scored her abilities. I do think my documentation speeded up the process. The school wasn't interested in the exact diagnosis per se. They explained that they focus on the child's needs, and do not attempt to make a diagnosis.

Their assessments measured and scored her abilities compared to typically-developing peers. For example, her expressive speech was scored at 11-14 mth old (she was nearly 3 at this point). They did self-help skills, cognitive skills, gross motor and fine motor, motor planning, etc, testing.

If you have this type of documentation from the developmental ped she sees, I'd bring it. I'd also give a copy to her teacher the first day of school, so the teacher knows exactly what your daughter's delays are. I have friends with older special needs kids, and I know the IEP process can easily take the first month of school. If it's like our schools, she won't begin therapy until the IEP is done and signed. You don't want the teacher trying to guess what your dd's triggers are, and what is tricky for her.

I know some people disagree with this, but we've always been very open with teachers, swim coaches, nursery providers at church etc. We feel that people need to know how they can best help dd. If they feel they aren't capable of working with dd, frankly, we'd rather know upfront.

Our county is very small, yet has an excellent reputation in the central Virginia autism community. They work very hard with the kids, and I have loved the improvements I've seen. I hope you have the same experience.

 

[GraceLuvsWDW]

I don't have experience with trying to get an IEP for a "school-ager". Our dd went straight from Early Intervention into Special Ed. preschool. However, I did bring all my documentation from dd's evaluation at UVA Children's Hospital to the initial meeting at the school. They did their own testing, and scored her abilities. I do think my documentation speeded up the process. The school wasn't interested in the exact diagnosis per se. They explained that they focus on the child's needs, and do not attempt to make a diagnosis.

Their assessments measured and scored her abilities compared to typically-developing peers. For example, her expressive speech was scored at 11-14 mth old (she was nearly 3 at this point). They did self-help skills, cognitive skills, gross motor and fine motor, motor planning, etc, testing.

If you have this type of documentation from the developmental ped she sees, I'd bring it. I'd also give a copy to her teacher the first day of school, so the teacher knows exactly what your daughter's delays are. I have friends with older special needs kids, and I know the IEP process can easily take the first month of school. If it's like our schools, she won't begin therapy until the IEP is done and signed. You don't want the teacher trying to guess what your dd's triggers are, and what is tricky for her.

I know some people disagree with this, but we've always been very open with teachers, swim coaches, nursery providers at church etc. We feel that people need to know how they can best help dd. If they feel they aren't capable of working with dd, frankly, we'd rather know upfront.

Our county is very small, yet has an excellent reputation in the central Virginia autism community. They work very hard with the kids, and I have loved the improvements I've seen. I hope you have the same experience.

I do have several reports from the different specialists and a binder full of testing results. I will copy it and take it to the school. I offered to do this for the principal and she replied that she would rather have a letter addressed to the school from the Drs stating exactly what interventions would be necessary and getting something like this is practically impossible so I will take the reports as you suggest instead.

Thanks!

 

[BeckyScott]

Also, I did go to the public school at the advice of our OT and the principal told me they do not initiate any 504 or IEP's until school starts and the techer discovers a problem. How do I reply to this? I thought of taking all of her medical test records to the school??? Any recommendations?

I don't know if that would be exactly true. Hmmm. I mean, really, there would be plenty of circumstances where the IEP would need to be in place the first day of school. Maybe the principal doesn't think your DD needs to have one in place for the first day, but then again he doesn't know her does he?

For example, what if there was a hearing impaired child who needed a 504 for a signer? Would they just expect the child to show up the first day of school with no accomodations at all, and keep going until they finally get around to doing a 504? I would question him about that. There are most definately circumstances where a 504 or IEP would need to be in place first. Physical disabilities and 504's, obviously, but also other kids that would need a significant amount of support in the classroom. And I would think especially if the child possibly would need a para, because that is a staffing issue that the school will want to know in advance. You can present it, that it would be of benefit to the classroom teacher for an IEP to already be in place... that your daughter is a "handful" (or however you want to phrase it) and that it wouldn't be fair to the teacher or the other students in class for her to be in there without something already in place.

I remember when youngest DS was starting kg. He had been to a SpEd preschool so he already had an IEP in place. His kg IEP had him sharing a para. The school was insistent on that, that he could share with a couple other kids. I tried to tell them but I'm just an overprotective mom.... after the first day, they realized he needed his own para and they had to find someone to hire ASAP... (I resisted the urge to scream "I told you so!")... and then they tried to make me feel bad about it like I'd inconvenienced them by making them do staff hiring. Tried, did not succeed. Not my fault they didn't listen to me, they could have taken a month or two to hire his para instead of trying to find one in two days. And this was a kid who was already well-documented.

Anyway, if I were you, I'd contact the school district's Special Ed person, rather than the principal. Sometimes the principal doesn't know a whole lot about IEP's and stuff. Call them, but also send them a letter. (You know the #1 rule of Special Ed system is that if it's not in writing, it didn't happen) Write them, send copies of any relevant test reports, tell them the names of her therapists, and tell them you are requesting that your daughter be evaluated for special education services. They won't want to do anything over the summer, but there's still time within this school year. In the letter tell them you'll be calling to set up a meeting on such-and-such date, but that they are free to contact you before then.

 

[bookwormde]

One thing to remember is that no 1 test or lack of characteristic can say that a person is not on the spectrum (actually there is no clinical procedure for doing this at all) all that can be said is that they lack sufficient characteristics or manifestations to meet the clinical definition requirements. This is why the new draft standards are much less reliant on these scoring tests (that and the variability as to how they are implemented creates serious variability since all the input is subjective). The new draft standard is much more reliant of the nature and severity of the impact and where possible analytical observation directly of the neurovariation.

GraceLuvsWDW


As for initiating the IEP under section 300.125 or IDEA Child find requires that the state locate and evaluate children who are in need for special education even if they are in private schools so at the moment they are likely in violation of this portion of IDEA

Once the evaluation has determined eligibility, then under 300.341 (a) the IEP must be in effect at the beginning of the school year.

I cannot find the specific section by typically the district has 60 days to complete the evaluation (this is why it is important to start right now).

Most principals do not have a “clue” when it comes to IDEA and what it actually says. You need to contact the district and talk to the head of the special Ed department (who may pass you down to the educational diagnostician for your home school).

Basically you need to write a letter that states that you want an immediate evaluation under section 300.125 of IDEA so that your child may have an IEP in place by the beginning of the next school year as required by section 300.341 (a) of IDEA.

Do this even if they verbally say they are going to do the evaluation. They should have you sign a permission to evaluate form. And be sure to date your letter and have the district sign a receipt copy of the letter or if they will not send it certified return receipt mail.

bookwormde

 

[GraceLuvsWDW]

Bookwormde, thanks so much for your suggestion. I have composed a letter stating her issues. I will copy an excerpt here to see if you think this is appropriate:

"I am attaching reports from XXXX's Developmental Pediatrician and her Occupational Therapist. XXXX has been diagnosed with several developmental delays, Sensory Processing difficulties and Anxiety issues. As you will see on the attached reports, these disabilities hinder her success in the classroom and can create problems with her teacher and fellow students if there is not some understanding and support of the problems.

XXXXX has excessive anxiety which can manifest as school refusal and problems separating from her parents in the morning when dropping her off. Her anxiety can manifest as severe stomach aches. She has poor frustration tolerance. A teacher who is experienced and firm and a structured environment where XXXX knows what to expect will help alleviate these issues. XXXX has many appointments which I try to schedule outside of the school day but which may cause her to miss school.

XXXX has fine motor delays which impair her handwriting and drawing. She is in occupational therapy to address these issues but her handwriting has had minimal improvement and she still writes in a large, strained fashion. She has trouble holding a pencil or scissors correctly and cannot write small letters or numbers.

XXXX is being treated for Attention Deficit and Sensory Processing issues. She can be disruptive in the classroom by making inappropriate noises, touching others inappropriately, refusing to make and maintain eye contact, and defiance with teachers. XXXX exhibits tactile over sensitivity which can manifest as aggression towards others, extreme responses to temperatures, tastes, and sounds, crashing into things or being excessively rambunctious, putting things in her mouth, and will sometimes undress inappropriately."

After all this should I directly request the evaluation or should I specifically request certain accommodations, and if so what kind of accommodations would she need? I am sorry I am so new at this and just don't know what they can/will do in these situations.

Thanks for your help!

 

[bookwormde]

The general background information is good an if they follow the law will help move things along.

Yes formally request the IDEA evaluation, if not the letter has no “legal standing”, although under the law they should do an evaluation just from your information. After the classification is done, is the time for accommodations to be discussed formally since a lot of the information from the evaluation is used as a basis (along with outside medical reports) for the accommodations.

Again CC the principle but address it to the special ed director.

I think they have 10 days to reply.

bookwormde

 

[BeckyScott]

"In accordance with IDEA, I am requesting that she be tested for special education services."

That's really all you need to say at the end, because that's the magic words that bookworme was talking about. They have 10 days to get back to you. CC it, keep a copy yourself, and hand-deliver it.

You might want to make mention of her age somewhere in there (I know it's on the test reports, but...) Say that she'll be entering kg in the fall. Maybe "My daughter will be entering kg in the fall at such-and-such school. In accordance with IDEA, I am requesting that she be tested for special education services."

 

[jodifla]

One thing to remember is that no 1 test or lack of characteristic can say that a person is not on the spectrum (actually there is no clinical procedure for doing this at all) all that can be said is that they lack sufficient characteristics or manifestations to meet the clinical definition requirements. This is why the new draft standards are much less reliant on these scoring tests (that and the variability as to how they are implemented creates serious variability since all the input is subjective). The new draft standard is much more reliant of the nature and severity of the impact and where possible analytical observation directly of the neurovariation. bookwormde

Can't see how this will help anything. IN fact, I imagine it will make it many. many, many times worse!!!!!!!!!!!

MORE AND MORE AND MORE CHILDREN MISLABELED BY THE AUTISM MACHINE IN THIS COUNTRY!!!

P.S. But thank you for pointing this out. I have some more research to do on this.

 

[jodifla]

I do have several reports from the different specialists and a binder full of testing results. I will copy it and take it to the school. I offered to do this for the principal and she replied that she would rather have a letter addressed to the school from the Drs stating exactly what interventions would be necessary and getting something like this is practically impossible so I will take the reports as you suggest instead.

Thanks!

It's definitely a good idea to talk to the Special Ed director. Some principals are very cued in, others are not.

I'd say many of us started with the schools in special preschool classes, and so the IEP is handled either before they get to class or very soon after.

Even with that, it can really drag out. Ours sure did. And their knee-jerk reaction was to try and put our son in an autism classroom. We talked it over with our clinicians at the university research hospital we've been taking our son to, and they said, absolutely do not do this. It's not the right setting for him, and will likely make things much worse for him.

So, we had to take a VERY proactive stance on the IEP team, consulting with lawyers and having the head of the research department phone conference in on the IEP. It was just crystal clear that he was so much more knowledgeable about what was going on with our son then they were, they stopped arguing and starting listening.

Then we got the appropriate IEP and supports.

Particularly if your child doesn't fit into a program they already have, it can be frustrating. THey'll want to do what's easiest for them.

Visit any program they want to put your child in, to make sure you think it's a good fit.

It sounds like the frustrating thing for you is you haven't found a person who really can tell you what's going on with your child! It sounds like a lot of "best guesses."

My DS doesn't have that level of anxiety your daughter has, but a friend's child is highly anxious and OCD. I know it causes stress in their family. They are still figuring out what to do.

Having a child with special needs is a journey, it seems. It's not like you get to your destination and you're all done.

Good luck to you and your beautiful daughter!!

 

[bookwormde]

Jodofla,

The idea is to treat the autism spectrum as what it is a “spectrum”, so that those who do not specifically meet the clinical definition still have useful information for clinicians to help them with particular characteristics or manifestations.

Ideally there should be no need for a diagnostic threshold, we should just be meeting the particular need that evolve from the specific or interacting group of neurovariations, but that unfortunately is unlikely until the underlying genetic mapping is complete, until then all that clinicians can do is where practical identity the indication of the genetic variation and the manifestation which sometime come from it.

As I have said I believe that the vast majority of individual who are getting autism diagnosis and related ones such as PPD-nos and many who have alphabet diagnosis will genetically verify as having parts of the spectrum gene set when it is available.

Except for the insurance companies and governmental regulations creating a “hard line” between autistic and not autistic does a great disservice to people on both sides with the line.

I agree there should not be a “autism” machine, this type of clinical and educational services are completely inappropriate since no 2 spectrum individuals are the same, but this in no way diminishes the value of knowing that there is a good chance that the characteristics are part of the autism neurovariation set, denying this is just as damaging.

It is a NIH panel, I had a link to the draft but it is no longer active.

bookwormde

 

[GraceLuvsWDW]

It sounds like the frustrating thing for you is you haven't found a person who really can tell you what's going on with your child! It sounds like a lot of "best guesses."

My DS doesn't have that level of anxiety your daughter has, but a friend's child is highly anxious and OCD. I know it causes stress in their family. They are still figuring out what to do.

Having a child with special needs is a journey, it seems. It's not like you get to your destination and you're all done.

Good luck to you and your beautiful daughter!!

That is exactly what's so frustrating. Even I don't know what's appropriate and what's not. To be quite truthful, I still hesitate in trying to initiate an IEP or 504 because I don't want my daughter labelled "special needs". (I went to WDW 6 times before I got a GAC, and now I wonder why I waited so long) I know that is my own filter of judgement because when I was in grade school (back in the 70's) the special needs kids were not what I view in my daughter. She obviously needs some classification, or else I fear she'll be disciplined for her out of bounds behavior. BUT I fear she'll be ostracized by the other kids and treated differently by the teachers (coddled) and I am more of a proponent of helping her to adjust to "normal society". I know that might not be a popular opinion here but I have to be honest and say I don't wish for my daughter to be labeled as "different" (eventhough we are all different to varying degrees) and treated differently and therefore not receive a level of education that will allow her to become the best she can be. She obviously needs OT, and I'm hoping the school could provide that. I hope I'm coming across and do not sound snooty, I just want my daughter to adapt to regular society as best she can.

As far as you bringing up the anxiety and OCD, what's weird is she has many OCD characteristics. When questioned about ADHD they ask "does she lose things, forget things?" and I say "are you kidding me? She can find things I have lost and ritualistically puts all her things away perfectly."

I guess I am frustrated that it's all so undefined. I am an accountant, very black and white. I like there to be answers. You have a headache, you take aspirin. I don't like the use of psychotropic meds on my too young daughter, I worry about the long term effects to her developing brain. Her OT helps me with my doubts, she counsels me that my DD already has a different brain and the meds help make it better, not worse. But we as parents suffer over these very difficult decisions that could affect us all for life.

 

[GraceLuvsWDW]

As I have said I believe that the vast majority of individual who are getting autism diagnosis and related ones such as PPD-nos and many who have alphabet diagnosis will genetically verify as having parts of the spectrum gene set when it is available.

Except for the insurance companies and governmental regulations creating a “hard line” between autistic and not autistic does a great disservice to people on both sides with the line.

I agree there should not be a “autism” machine, this type of clinical and educational services are completely inappropriate since no 2 spectrum individuals are the same, but this in no way diminishes the value of knowing that there is a good chance that the characteristics are part of the autism neurovariation set, denying this is just as damaging.


bookwormde

It is my greatest hope that they do find out what all of this is being caused by, whether it be a genetic issue or something else. This is becoming more and more prevalent, I never heard of SPD before and many people deny the existence which just makes me more confused and hopeless, but now you hear of cases all the time. Even at our OT's office, there are far more severe cases than my DD, which just breaks my heart. I did nothing when I was pregnant (except eat a LOT), no aspirin for headaches, absolutely no coffee, I was so very, very careful. So the idea that it was prenatal exposure is crazy. She was breech and 11 days early and only 6lbs, but every other thing was textbook.

I wish they could pinpoint a genetic issue, then perhaps that would be the first step to a legitimate diagnosis, and then to an effective treatment!

 

[KirstenB]

That is exactly what's so frustrating. Even I don't know what's appropriate and what's not. To be quite truthful, I still hesitate in trying to initiate an IEP or 504 because I don't want my daughter labelled "special needs". (I went to WDW 6 times before I got a GAC, and now I wonder why I waited so long) I know that is my own filter of judgement because when I was in grade school (back in the 70's) the special needs kids were not what I view in my daughter. She obviously needs some classification, or else I fear she'll be disciplined for her out of bounds behavior. BUT I fear she'll be ostracized by the other kids and treated differently by the teachers (coddled) and I am more of a proponent of helping her to adjust to "normal society". I know that might not be a popular opinion here but I have to be honest and say I don't wish for my daughter to be labeled as "different" (eventhough we are all different to varying degrees) and treated differently and therefore not receive a level of education that will allow her to become the best she can be. She obviously needs OT, and I'm hoping the school could provide that. I hope I'm coming across and do not sound snooty, I just want my daughter to adapt to regular society as best she can.

As far as you bringing up the anxiety and OCD, what's weird is she has many OCD characteristics. When questioned about ADHD they ask "does she lose things, forget things?" and I say "are you kidding me? She can find things I have lost and ritualistically puts all her things away perfectly."

I guess I am frustrated that it's all so undefined. I am an accountant, very black and white. I like there to be answers. You have a headache, you take aspirin. I don't like the use of psychotropic meds on my too young daughter, I worry about the long term effects to her developing brain. Her OT helps me with my doubts, she counsels me that my DD already has a different brain and the meds help make it better, not worse. But we as parents suffer over these very difficult decisions that could affect us all for life.

Go into the entire process with an open mind. Special needs kids are like all kids, some are smart, some are not. Before Zoe was born, I substitute taught a lot, in our older dd's elementary school. Sometimes special needs kids are "twice special" meaning they're enrolled in gifted classes, and have an IEP. Certainly, there are kids with cognitive delays, no mistake. Fortunately, those kids are sometimes very gifted socially, and have no shortage of friends. I subbed so often in special ed, I got to know the kids pretty well. There are so many types of accomodations. Some kids were in self-contained classes, some just had a need for weekly OT, PT, or ST. Regardless, these kids taught me far more than I taught them. They were really fun, and I saw what a wide range of needs IEP's served.

I think I understand what you mean by growing up in the 70's. I look back and can see kids who seemed really clumsy, or had a hard time with reading, or whatever, and they were never pulled out for any type of services. Nowadays, a wider range of kids get services, thank God.

 

[BeckyScott]

I grew up in the 70's too. Are we old or what? The kids in the trailer out behind the school. We had a big big problem with that, too. The place where we drew the line was the "short bus", it was just an odd thing with DH and I, we didn't want DS on the short bus, I drove him. It really doesn't matter how big the bus is, really, but I understand your hesitance. DH and I had some leftover garbage in our collective filter of the trailer and the short bus.

Every child is different and every school is different, but I can tell you how it's done here with DS. He is in the regular classroom all day except for when he gets pulled out for therapy. In his classroom, kids get pulled out for ESL, Title 1, all kinds of stuff, there are kids coming and going all day. So he doesn't stand out because of that. Probably half the kids in his class leave the room at some point during the day to go somewhere. It's happened since the kids were in kg, so they don't think much about it.

Along with that, the presence of a para doesn't seem to phase them either. If the para is good, she'll blend in. The para is also trained to not just focus on "her" kids 100%. So the kids see her more like a teacher's aide. The younger ones usually think that they just have two teachers in their room. As they get older, they start to figure out that the para is in there for a reason, but by that point they've also started to figure out that specific children need extra assistance. Like with DS, they might not understand autism, but they do know that DS flaps sometimes and he's slow and he spills things a lot. I have always been concerned about how he fits into the classroom, and I usually ask about that at conferences. And while the kids notice he's a little different, he still has his place in their community and they accept him and notice his strengths. These days, most kids are in classrooms with a couple different IEP'ed kids, several ESL kids, some Title 1, it's a very mixed-up and blended situation and they don't think twice about it.

He is on regular curriculum. Our schools are big into that, they really don't like to modify curriculum, so it has to be really really necessary for them to do. (thus our prob with homework, but that's a different thread) He's in elementary school, of course, but if he continues to have regular curriculum as he gets older, he's getting the same education and thus would get the same diploma as everyone else. Our high school has "special classes" that count for credits the same as regular classes, and it's years away, but I'm hoping we don't need to go that route, but we'll have to see when the time comes. And by the time he gets to middle school and high school, the kids change out rooms so often that him going off to therapy really wouldn't be noticed by anyone. At that level, they do a lot of "class within a class" and the kids are used to that idea, too, and don't seem to notice the extra teacher.

Every school has a different program for discipline. DS doesn't have a behavior plan. But they did sort of modify it for him, off the record. Typically, they put the child in sort of a "time out", but you know if you have a kid who really prefers to be left alone and will sit playing contentedly with his shoelaces for as long as you let him, the whole concept of a "time out" is lost. Since his behavior usually has something to do with not wanting to do the work presented, they remove him from the room (with work in hand) and he goes elsewhere to do it. Either to the counselor, or to a different classroom. (usually to his last-year's classroom where the teacher knows him well) Depends on how far gone he is. Anyway, the school will be able to tell you what their little discipline program is, and you'll probably know right away if it's going to work for your DD or not, and you can discuss it with them.

I just wanted to reassure you that things really are quite different than the olden days. But also reassure you that we've been there on it too. I think you'll find that once it actually gets put in place and started that it works out and that your kid doesn't really stand out in class. And by the time the kids are old enough to notice, they've been in class with your child for years, know them, and don't think too much one way or the other.

 

[sdarwkcabemanmy]

I don't want my daughter labelled "special needs".

I had a hard time with the 'label' at first too. I STILL have a hard time with it, because I worry about as he gets older whether or not he'll be teased, picked on, etc because he's in Sp.Ed.