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Special Needs
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Curious: Autism DX question
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Does everyone with an autism dx or suspicion of autism get an MRI to rule out a brain abnomality? One the same note, does everyone do genetic testing?
I am curoius because ACC babies live tend to have Autism Spectrum behaviors. The MRI automatically proves "high probability of developmental delay" and therefore we are automatically able to get EI. I think there could be more people out there with ACC, but they have been misdiagnosed or labeled "autistic".
WAY 2 Cool 4 School 
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Re: Curious: Autism DX question
We did see a pediatric neurologist, but she did not recommend an MRI. We had no other indicators that something else might be going on and no genetic history that would indicate a genetic issue. Additionally, my DS's delays are totally social/emotional and is pragmatic language. I think it would depend on each child's presentation of autism, how into "blanket" testing the professionals they see are, the age of the child when diagnosed, etc.
Can I ask what ACC is? I'm not sure if its been mentioned to me.
ETA: Sorry - I see your story below. I saw your post earlier and in the title it said AAC instead of ACC and I didn't compare the screen names. With the alphabet soup of illnesses on here it is hard to keep up sometimes!
ACC is Agenesis of the Corpus Callosum. It is the structure in the brain that connects the right and left hemispheres. Bascically it is the main circuit board for your brain. My son has partial ACC. Some of his developed and for some reason stopped growing before it was finished. It grows from weeks 5 until 20 during pregnancy. It's lack of growth can be caused by genetics, alcholism, toxplasmosis, an infection in the fetus, a cyst taking up the space in the brain where it is supposed to grow or some other catastrophic event during the pregnancy.
Some people are born without one and never know it. Others get DX of Autism because there is a spectrum of things the corpus callosum does. It manages coordination(development), speech, eating (sucking, swallowing, & breathing at the same time), social interaction (one side of the brain sees the frown, the other side of the brain interprets that the person is sad) and a whole slew of things that are easy for people to learn. An ACC child needs repetition to learn a lot of tasks we all do without even thinking.
Every ACC patient presents differently. Some may just be hyperactive kids or develop slower than other kids. Others could have a whole spectrum Autistic behaviors. Some have other brain issues on top of ACC which do not help the situation. You just dont know. The brain is very plastic and environment also affects if the brain can "rewire" itself.
ACC kids will get a label of "Autistic" or "Cerebral Palsey" which is not exactly accurate, but those are the catagories school systems use.
Christopher had an MRI due to an eye issue; his right eye has abnormally large eye cup pallor. The neuro-opthomologist wanted to rule out any brain annomolies. That's where we found he had something called delayed mylenation on his corona.
That didn't get him automatic services but the second neurologist we saw felt that we sould be tested through EI but wouldn't use that as the diagnosis code and instead labeled him as autistic at 15 months old. I disagreed.
Here's what I found during my research tha made me wonder. It is from the CalTech website. CalTech has an ACC research study.
"Estimates of the frequency of AgCC (including both complete and partial agenesis of the corpus callosum, but not other corpus callosum malformations) vary greatly. Recent studies in the United States suggest that the broad category of AgCC occurs in approximately 1:4,000 live births, which is likely to be an underestimate. A study of head ultrasounds performed on apparently healthy full-term newborns in Taiwan suggests an incidence of 1:1,000, while a study in France reported 1 case per 7,000 births that resulted in elective pregnancy terminations because of the AgCC diagnosis."
On the Autism dx: From my limited amount of time going to blogs and ACC websites, I have sensed a frustration among ACC'ers about their child being labled "Autistic". Frankly, I am not sure why. If that dx gets Nate more services then I am all for it. Maybe I'll ask the ACC listserve. Maybe it is the fact their kid get labeled in the first place?
I don't want DD labeled as Autistic or cerebral palsy, not for any other reason than those are NOT her issues. Autism, cerebral palsy and ACC are different, even though the outward behaviors can sometimes be similar. I think that parents of autistic and cerebral palsy kids would feel the same if their child were to be randomly labeled as ACC if that is not their issue. If we know the actual diagnosis, then that is what my child should be "labeled" if you will. I also think proper diagnosis/labeling is important for research purposes. If my child is erroneously labeled as autistic then her progress will be lumped in with the success rates in autistic children of various therapies, etc. As a parent, I want to know the therapy success rates of other ACC'ers since that is what DD's issue is.
You have mentioned several times on the board that ACC kids are often randomly labeled as autistic or cerebral palsy so they can receive more services. I am confused by this as DD gets MORE services (with less hassel I might add) with an ACC label in my state. It automatically and undeniably qualifies her for EI--and later when she is in school, she will automatically qualify for any special services she might need (as a teacher, I specifically asked our SPED coordinators about this and they called ACC a "free pass to everything!"). Even my insurance company considers ACC an automatic qualifier since it is a brain defect. Does it differ that much by state?
I do think some autistic kids and cerebral palsy kids might be misdiagnosed, but an MRI gives a very black and white answer as to ACC/cerebral palsy. While ACC/cerebral palsy can be ruled out for an autistic child, the actual diagnosis of autism is not as easy to obtain. Of course, some kids can have ACC in conjunction with autism, and that is another issue altogether.
I may have mis-spoke. But my intention was to say that ACC is not a box that can be checked off on some form. I got this impression from the ACC list-serve. Because the discriptor box was not there, some people's kids got the "label" of CP or Autism. This could have been for children who are now in high school or older. Since then, I am sure most states/countries have modified things for the current scientific norms. Maybe some haven't. There are people on the list-serve from all over the world so I cannot say which folks had that issue with their children......
I totally agree that ACC is a free pass (at least in my state as well) and I am also grateful for it. I don't have to spend valuable energy trying to prove something is wrong with my child.
Hopefully ACC is a "free pass" for all the states. I am sure it is different in other countries though. I too am grateful that I don't have to argue or prove my DD's condition. It makes life much easier in that regard.
Auntie, I did not mean to imply that just because of an ACC diagnosis, the child would get unlimited services. Yes, they still have to show they need them, but they do not have to go through the laborious process to get them that others often do. For example, in my county, we have a process that children must go through to be evaluated (which takes a minimum of 12 weeks, often up to a school year before they will receive an IEP). During this time, teachers meet with diagnistitians who give strategies based on the academic/behaviorial difficulty. The strategies are tried for a minimum of 6 weeks then the team meets again. This process goes on until it is determined that typical interventions are not having the desired effect and only then are they given dianostic tests to see if there is a LD, etc. With a diagnosis of ACC, DD gets a "free pass" to go straight into diagnostic testing if necessary. The process is much shorter. We will not have to "prove" her disability. We will just have to go through the process of finding out if she is far enough behind (if you will) to receive services.
My DD has never had an MRI or genetic testing. She was diagnosed with Asperger's by a neuropsychologist.
Yes, I REALLY am a teacher and yes, I do understand the concepts of IDEA, FAPE and LRE. One you left out is a process, commonly known as RTI that is accepted within the confines of IDEA. Many states use it and it does have time guidelines. As a teacher, without a specific parental request for special education testing and without a known condition that potentially impacts learning, I have to follow the RTI process as outlined.
Here is a cut/paste from the Texas Special Education website with a timeline similar to what I described above (GA's is not as "user friendly"):
"Failure to achieve: Failure to achieve adequately for a student?s age or meet State-approved grade-level standards may be determined by measures such as in-class tests scores over time (e.g. six weeks), statewide assessment scores, stangrade average dardized achievement test scores, criterion-reference measures, and/or a Response to Intervention (RtI) process. A student?s failure to pass the statewide assessment (e.g. Texas Assessment of Knowledge and Skills or TAKS) should not automatically result in a learning disability referral and/or determination. The determination of a learning disability should include a variety of information sources and measures and should not be based on a single measure.
Repeated assessments: The multidisciplinary team must also consider documentation of repeated assessments in determining LD eligibility. Data-based documentation of repeated assessments may include response to intervention progress monitoring results, in-class tests based on state standards (the Texas Essential Knowledge and Skills or TEKS), benchmark assessment, criterion-referenced measures or other regularly administered assessments. Data from repeated assessment results used in the LD eligibility process should typically have been administered at evenly-spaced intervals, such as once per week, over a reasonable period of time. A reasonable period of time may typically fall within a 4 to 8 week period, six weeks being the average."
So, since a teacher has to document a trend over time (usually 6 weeks minimum) and then there is the 6 week average of interventions (but even up to 8), yes, it can take 12 weeks or more before a child shows that repeated interventions are not proving effective and the child is moved into the tier in which more diagnostic testing takes place. Once in that tier, the school has 15 days to notify the parents of the referral (2 more weeks). Once parental consent is given (undetermined amount of time), then the 60 day timeline for testing comes into place (potentially another 8 weeks). Once the testing is finished, another 30 day deadline for IEP implementation (potentially another 4 weeks). Add it up and it can take up to 26 weeks for an IEP to be official. Now, with this timeline, if a teacher begins the first day of school with documention, it is still more than a semeter before an IEP is potentially in place. Considering that a school year is only 36 weeks, many kids can take a school year to get an IEP. A parent can expidite this, but THE PARENT has to request specific testing. Additionally, children with known conditions can be directly referred by a teacher, if needed, without the RTI process. Parental consent for testing is still needed.
I respect your knowledge and experience in this area, and I ask that you please show the same respect for others who also have experience from a different angle. As a teacher, I have to follow the RTI process. Is it a flawed process? Most definitely, but it is the process that has been adopted by many states to help reduce the number of students who are unncessarily assessed for special education.