Finally, written report.

Ktllc

New Member
I'm going to use my mediocre typing skills and report the doctor's clinical impressions:

"Based on the assessment information. V's cognitive sills appeared to be at an average level, without significant difference between verbal and nonverbal skills. Borderline communication skills indicated on parental reports could be more indicative of social difficulties using language in social situations than language delays given performance on verbal cognitive measures. This would seem consistent with parental ratings indicating clinically significant levels of wihdrawal, possibly associated with anxiety concerns. Difficulties with anxiety and use of language in social situations could limit his ability to acquire and demostrate academic skills as indicated by below average performance on school readines measures. Difficulties with anxiety could also promote occurences in problem behavior to escape anxiety producing situations and/or receive access to attention and alternate activities. To minimize occurences of problem behavior individuals should focus on instructional tecniques, as compared to reactive strategies.
Although parental reports indicated concerns regarding possible Autism Spectrum Disorders (ASD) given tendency towards compulsive behavior, social difficulties, and sensitivity to environmental stimuli, these concerns would seem to be associated more with anxiety concerns, than an autism diagnosis. V easily used nonverbal gestures to regulate social interactions, frequently redirected the examiner's attention to accomplishments, and consistently changed his nonverbal behavior in response to examiner's social overtures. These behaviors would be inconsistent with Autism Spectrum Disorders (ASD). Minimal indications associated with autism would seem consistent with previous assessment information."

diagnosis:
Speech/language delay
Academic underachievement
Anxiety
Monitor activity level for ADHD

Just to be more specific, the speech delay is for the receptive language and he tests at the 21 months age range. That is REALLY low.

The anxiety and speech delay being the source of all problem according to doctor.

I have been told so many things, I really feel lost. This doctor advises us to get a language assessment geared toward language in social settings. Does that even exist??? His diagnosis is based on parent report. And I promiss I was truthful in my answering questions. Both husband and I had not realised it was that bad...

What do you guys think? Time to really believe it has nothing to do with Autism Spectrum Disorders (ASD)?

Time to contact the school district again and talk about the speech delay?

Time to consider medications (husband really against it)?
 

Ktllc

New Member
Ok, his credential are psychologist Phd, BCBA-D (Board Certified Behavior Analyst-Doctorate).
The test were:
BASC-2 (Behavior assessment system for children, second edition)
BBCS-III (Bracken Basic Concept Scale, third edition)
VMI-6 (Developmental test of visual-motor integration, sixth edition)
SB-V (Stanford-Binet intelligence scales, fifth edition)
Vineland-II (Vineland adaptive behavior scales, second edition)
 

DammitJanet

Well-Known Member
Didnt you say this guy had a specialty in autism when you posted about getting this testing done? If so, I think if he had seen any signs of it he would have told you.
 

buddy

New Member
The positive here: Even with a diagnosis of autism, these are maybe the symptoms that would stand out most and need help. I am glad he didn't go down the behavior road, he discussed the skill deficits and that is HUGE. School district should absolutely perk up. Given his receptive language issues , many of the methods would be similar to Autism Spectrum Disorders (ASD) methods....more visual cues, use of picture schedules etc. that can help him to follow along.

Should you take Autism Spectrum Disorders (ASD) off the table at age 4... No, but with these results I would feel comfortable tabling it as long as he gets therapies and interventions for the language issues ( which comes first...anxiety or lang or behaivor... I would go down the conservative route that lang issues can cause anxiety and behavior issues..... a huge deficit like that??? if it turns out that in a complete lang evaluation he really does have these issues then I would hit that HARD. wouldn't you be anxious if you did not fully understand what was going on?? Always misunderstanding and frequetly getting in trouble over it, getting frustrated and people being angry over and over at school???

I will tell you that I twice heard a very similar thing about how my son was able to use what language he had socially and seemed more social than he should be to have autism. Then those very same folks twice did full autism evaluations including specific autism protocals including the ADOS (autism diagnostic and observation scale) and he was smack dab in the autism range on their own standardized testing. I really feel it takes autism specialists to do a full autism evaluation for those more borderline kids unless you have a very experienced person who actually works with people with higher "functioning" forms of autism. But he could really NOT be autistic too and have issues that very much overlap with autism, and that is fine... as long as those issues are all identified and worked on. The main thing to me... he did not go down the "this kid is being ODD" road and thinking he needs rewards/consequences to turn it around! YIPEE!!!!

What was his expressive language age? A lower receptive age is far less common than a lower expressive age (again more frequent in Autism Spectrum Disorders (ASD) but also happens with other kids of course)

So, in answer to your question about social language evaluations, YES absolutely. I would still ask that the therapist who does it be someone who is very familiar with autism just to make sure they understand the kinds of social delays to look for in children that age. But not only the social piece should be done. The tests he used gave generalized results. I would ask for a complete language evaluation because you can get more pictures of what parts of receptive language are affected.... vocabulary, processing/discrimination, etc..., meanings of language(semantics), etc. His scores are generalized from those tests (and are subtests and based some on parent report which is great but he is old enough to do testing) and they may do a taped (video and/or audio) language sample to look at how he uses language in context.

From the other things you have said I think it would still be good to have him get a full Occupational Therapist (OT) evaluation. (I forget if you did that yet)

No matter Autism Spectrum Disorders (ASD) or not, these skill deficits (anxiety and language delay) are demanding of intense attention and the school district should now realize he needs more service. You are on the right track and I am just really relieved that he found actual deficits regardless of the final diagnosis.....this is a far better way to describe him than to say he is a behavior kid. Know what I mean???

Keep going, you are on a much better track. AT age 4 you are way ahead of many of us at that point! I know it is long and frustrating though. Now to get the dumb you know what SD on board!!!!
 

Ktllc

New Member
To answer a few questions: this doctor told me he has over 10 years experience working with Autism Spectrum Disorders (ASD) kids. During an other evaluation, V was tested on the ADOS and other Autism Spectrum Disorders (ASD) protocole. His score was a little above normal but NOT in the Autism Spectrum Disorders (ASD) score range. That's why sensory processing disorder (SPD) was first mentioned and we proceeded with full Occupational Therapist (OT) evaluation. And his expressive language tested at 4 years, V is 4 1/2. So no huge delay there.
So now we know the defficit areas and I guess you are right: whatever we call it, we can work on improving those areas.
The devel. pediatrician office called me a little bit ago and they want to meet and talk about the results quote "in order to help Victor". I've asked husband to come with me. It is just to overwhelming to face alone. I hope the office will know of an EXCELLENT speech therapist. I wonder if the school speech therapist would even be able to handle a child like V? Afterall, she completly overlooked the problem back in August.
How about medications: would you give it a try? I know the devel. pediatrician. will mention it in order to control the anxiety.
Maybe I'm causing all the anxiety with my high expectations... Afterall, V is almost at the comprehension level of Sweet Pea! I don't expect her to understand everything that is going on around her. I would not get so impatient if I was talking to a 21 months old toddler.
To medicate or not to medicate... just to repair the damage?
 

susiestar

Roll With It
If they used the ADOS test then why did you not get results from it? Just being aware and using it "informally" is NOT a valid test in any way, shape, or form. I think you will see more autism related issues as he gets older but with the very low receptive language that may be a false impression on my part.

Did they give you the actual results or just a verbal or written overall report? These tests give a LOT of info but if you don't get the actual scores for the subsets you don't get ANY. On a couple of tests the overall reports showed Wiz has NO problems but when forced to give me the actual results instead of just the report that said he was fine, he was sky high on a few areas and that pulled his rock bottom scores on other areas up to "normal" levels. If I hadn't pushed for those actual scores and gotten someone to help me figure out what was the normal range and what Wiz' scores on each section meant, we could have gone his whole educational life wondering why he didn't work up to potential and thinking he just caused trouble because he wanted to rather than because he needed help.

Get some real, in depth speech language and auditory testing done. I would suggest calling around and asking at a university if there is one around that has these programs. Sometimes you can get help through them. Also consult a chldren's hospital if there is one nearby. let school do the testng they can, but don't depend on them. They look for problems that will affect school not his entire life and they also have a vested interest in finding no problems. I know most speech therapists would rather help a child than worry about budgets, but there are schools that pressure them to not identify problems because that is expensive.

I am just curious why, if his scores didn't show problems or anything significant on the ADOS and other autism tests, the doctor didn't give you the results? Just telling you he wouldn't have any significant results is bogus. One of the first things taught in the classes on how to give these tests is that if you go in expecting a response you will find it and if you just do part of the test then none of the results are valid - you must do all or nothing. So just "knowing" that V won't score anything significant is bogus - you simply cannot do that and have ANY degree of statistical reliability. With no statistical reliability the results mean nothing. You either do it right or you go home and don't do it. I hate when doctors pull koi like that. They hate doing it on me because I have been known to debate the statistical accuracy and bias in their testing methods with them (waaaayyyy too many stat classes, lol)
 

InsaneCdn

Well-Known Member
You absolutely need the detailed results from those tests. From every last one of them.
And... no ADOS? there's a couple other Autism Spectrum Disorders (ASD)-oriented ones, too... not their either.
In other words, this doctor did not go looking for Autism Spectrum Disorders (ASD) - had already ruled it out in his own mind before he even started the testing.

The level of detail... is what I would expect an initial informal result, often delivered verbally. Written? should be extensively detailed.
 
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Malika

Well-Known Member
Hi. Completely understand the dilemma about whether or not to give medications. My own feeling is that I would not want to do that, partly because I don't believe medications would help the situation. But what do I know... I am completely outside and you are on the ground. My own view about the "is he or isn't he on the autism spectrum" is really... to wonder what difference it makes, in the end, what it is called? V has skills deficits and that is what you need to tackle and are tackling. I do feel that things will become much clearer over time. Of course I do understand that it makes a difference if you need the label to get particular help and services. Anyway, as has been said, you have already got so far in terms of understanding and evaluation, which is just great as he is still so young. I guess you do all you can to help the anxiety, try the techniques that have been suggested to you, and see how that improves things. And also, vitally, see how things go when he starts kindergarten.
 

BusynMember

Well-Known Member
My son didn't get his Autism Spectrum Disorders (ASD) diagnosis until age 11 and we were also told he "can't" have it. The older he got, the more it became obvious that, regardless of the early professional's asseessment, he has it. I agree that for now IF THE SCHOOL WILL ACCOMODATE HIM WITH THE DIAGNOSIS THAT HE IS it doesn't matter.

However, in the US, the diagnosis is mandatory in the end if you want appropriate help. My son is eighteen now and we are going for adult supports. We just had Sonic's IEP for this year and after graduation. We were told that the school is changing his special needs label from Other Health Impaired to Autism. Does it really matter? Well, it didn't matter while he was in school because the school itself loved him (he was lucky) and he got anything he needed. But, as the school transition specialist told us plain out, "Sonic will get more services and more doors will be open for him to get help if his school educational label is autism." We agreed at once to change it. He is going to need those services and, in the end, he is on the autism spectrum.

If you can get everything you need from early school with the diagnosis that you have, I'd just go for it. If the school balks that he doesn't need the degree of services that you feel he does, then I'd get a second opinion and I'd go to a neuropsychologist. We did not have the same sort of luck with a regular psychologist than we had with a neuropsychologist. For one thing, neuropsychologist tested for a longer period of time (10 hours).

It's funny because when Sonic first started school, NOBODY believed he was on the spectrum and, because he was so young, we let it ride. He hung in there at school until about fifth grade when he no longer had any friends (friendship gets more complicated and more give-and-take at that age) plus he could no longer keep up with the work. He did not seem to be particularly upset about not having friends coming to the house. He tended to like being alone, although he could appear quite friendly. At times he acted almost like a typical kid. At times he seemed spacy and out of it. At 11, he was diagnosed with Pervasive Developmental Disorder (PDD)-not otherwise specified. This summer, he was tested again, because he was close to turning eighteen, and the diagnosis was autistic spectrum disorder (our neuropsychologist explained that pretty soon all spectrum kids...whether classically autistic, Pervasive Developmental Disorder (PDD)-not otherwise specified or Aspergers, would be under one umbrella term: Autistic Splectrum Disorder). Last week was the first time that the school itself acknowledged and promoted the diagnosis. The psychologist at school seemed very familiar with older kids on the high end of Autism Spectrum Disorders (ASD). But it took this long for acceptance of the label because Sonic is atypical. Everyone wants Sonic to succeed as an adult, even if he needs job coaching and other help. Since he's not little, they are no longer worried about labeling him. It is more about making sure he lives as full and happy a life as a he can, even though he will not be 100% independent.

I g uess this long ramble, which I tend to do, is summed up by saying, if you can get school supports for V, don't worry about the label. If they give you a hard time, get a neuropsychologist evaluation, but IF he has Autism Spectrum Disorders (ASD), and anxiety is always a big part of Autism Spectrum Disorders (ASD), you will probably start hearing the words more in middle or high school because the differences between these kids and other kids becomes far more obvious by then. If he doesn't have it, he has autistic-like traits, so supports can't hurt him. Do what you can to get him the help that he needs to live a full and happy life. Labels are for getting services. It's amazing how you fight for services with labels like ADHD/ODD but how easily they come with a diagnosis of Autism Spectrum Disorders (ASD) :) Take care and lots of good luck to V. If you don't get the servicess you want, I recommend calling the Dept. of Education in your state and asking for the name of the free parent advocate who works in your district.

One last thing: We found that Sonic is very sensitive to medication. He is doing much MUCH better without medications and their side effects. Every single child is different. V. may do better on medication. But you don't need to rush to a decision on that. Do research on any medication suggested. I wish, in retrospect, that this is what we had done.
 

buddy

New Member
My son didn't get his Autism Spectrum Disorders (ASD) diagnosis until age 11 and we were also told he "can't" have it. The older he got, the more it became obvious that, regardless of the early professional's asseessment, he has it. I agree that for now IF THE SCHOOL WILL ACCOMODATE HIM WITH THE DIAGNOSIS THAT HE IS it doesn't matter.

However, in the US, the diagnosis is mandatory in the end if you want appropriate help. My son is eighteen now and we are going for adult supports. We just had Sonic's IEP for this year and after graduation. We were told that the school is changing his special needs label from Other Health Impaired to Autism. Does it really matter? Well, it didn't matter while he was in school because the school itself loved him (he was lucky) and he got anything he needed. But, as the school transition specialist told us plain out, "Sonic will get more services and more doors will be open for him to get help if his school educational label is autism." We agreed at once to change it. He is going to need those services and, in the end, he is on the autism spectrum.

If you can get everything you need from early school with the diagnosis that you have, I'd just go for it. If the school balks that he doesn't need the degree of services that you feel he does, then I'd get a second opinion and I'd go to a neuropsychologist. We did not have the same sort of luck with a regular psychologist than we had with a neuropsychologist. For one thing, neuropsychologist tested for a longer period of time (10 hours).

It's funny because when Sonic first started school, NOBODY believed he was on the spectrum and, because he was so young, we let it ride. He hung in there at school until about fifth grade when he no longer had any friends (friendship gets more complicated and more give-and-take at that age) plus he could no longer keep up with the work. He did not seem to be particularly upset about not having friends coming to the house. He tended to like being alone, although he could appear quite friendly. At times he acted almost like a typical kid. At times he seemed spacy and out of it. At 11, he was diagnosed with Pervasive Developmental Disorder (PDD)-not otherwise specified. This summer, he was tested again, because he was close to turning eighteen, and the diagnosis was autistic spectrum disorder (our neuropsychologist explained that pretty soon all spectrum kids...whether classically autistic, Pervasive Developmental Disorder (PDD)-not otherwise specified or Aspergers, would be under one umbrella term: Autistic Splectrum Disorder). Last week was the first time that the school itself acknowledged and promoted the diagnosis. The psychologist at school seemed very familiar with older kids on the high end of Autism Spectrum Disorders (ASD). But it took this long for acceptance of the label because Sonic is atypical. Everyone wants Sonic to succeed as an adult, even if he needs job coaching and other help. Since he's not little, they are no longer worried about labeling him. It is more about making sure he lives as full and happy a life as a he can, even though he will not be 100% independent.

I g uess this long ramble, which I tend to do, is summed up by saying, if you can get school supports for V, don't worry about the label. If they give you a hard time, get a neuropsychologist evaluation, but IF he has Autism Spectrum Disorders (ASD), and anxiety is always a big part of Autism Spectrum Disorders (ASD), you will probably start hearing the words more in middle or high school because the differences between these kids and other kids becomes far more obvious by then. If he doesn't have it, he has autistic-like traits, so supports can't hurt him. Do what you can to get him the help that he needs to live a full and happy life. Labels are for getting services. It's amazing how you fight for services with labels like ADHD/ODD but how easily they come with a diagnosis of Autism Spectrum Disorders (ASD) :) Take care and lots of good luck to V. If you don't get the servicess you want, I recommend calling the Dept. of Education in your state and asking for the name of the free parent advocate who works in your district.

One last thing: We found that Sonic is very sensitive to medication. He is doing much MUCH better without medications and their side effects. Every single child is different. V. may do better on medication. But you don't need to rush to a decision on that. Do research on any medication suggested. I wish, in retrospect, that this is what we had done.


I agree with MWM, for now kids are often grouped together anyway and as long as he is accommodated for his specific issues that may be ok. I have worked in full on Autism Spectrum Disorders (ASD) classes at the preschool level and they really do have more involved kids so he could be better off in a more typical special needs preschool if that makes sense... a more general one.

But as he grows, as she said... doors open for Autism Spectrum Disorders (ASD). equipment, specific teaching strategies, access to sensory rooms, direct social skills training, visuals in the entire environment that help all of the students not just popping up when a specific student needs it, etc. so just monitor and adjust as time goes on.
 

Ktllc

New Member
A lot of help, as usual.

To clarifiy: an other psychologist had done the Autism Spectrum Disorders (ASD) testing back in september. I do have the results in written.
She did the following:

ADOS-3
Childhood Autism Rating Scale- standard version
Childhood Autism scale- questionnaire for parents.

On the ados, he as only 1 point in the social categorie. This point is related to asking for information, quality of social overtures (most were restricted to personal demands/interests) and repetitive reference to specific topics.
Reminder: Autism Spectrum Disorders (ASD) cut-off is 7points.

Total score for the SCAR2 is 21 (30 being the cut-off for Autism Spectrum Disorders (ASD)). His score was slightly elevetated with regards relating to people, emotional response, management of change, listening responses and activity level.

The tester was a psychologist at the Masters level.

I actual e-mailed her and very politely asked if there were any chances her testings could have missed some atypical form of Autism. She replied that, after looking at the scores again, she really does not believe it is any form of Autism Spectrum Disorders (ASD). But she said she was only human and a second opinion might indeed come up with different observations and scores. That I should not hesitate with a second opinion if I was not 100% comfortable with results.

After talking to Teachh, I now know that their waiting list is about 12 months! That is very long. I will put V on the waiting list and patiently wait for a second opinion.
We have some very good information (language and anxiety) to start working with. It should be enough for now.

Ok, next battle: the school!
I think I will be visiting the Special Education forum quite a bit. LOL
 

BusynMember

Well-Known Member
Well, she is going to say "No, I'm sure I'm right" lol.

However, there is no way to be sure she is right, especially at his young age. We didn't get the diagnosis that young either, as I said. It was when he was older that it became very clear.

Neuropsychs have PHD's. They are PHD psychologists with special training in the brain. Not so sure I'd trust somebody with a Master's only. Anyhow, good luck. Take your time, there is no rush for any label UNLESS you are denied services. And, in my opinion, go slow on the medication. In retrospect, I would not have medicated my son after he showed aggression and meanness (which is not like him) on even the first stimulant. I would have tried other things first. JMO :)
 
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