Elementary school diagnosis of autism -- effects later in life?

[GeorgiaGirl160]

I would really appreciate some guidance from the hive mind on this one please.  I'll try not to make it confusing.

 

DS is 9 yo and in 3rd grade.  We have been struggling with what was believed to be an attention problem in class since kindergarten.  We've tried behavioral rewards, etc with no success.  This year, he is getting worse.

 

We investigated Auditory Processing Disorder this fall on the suggestion of the vice principal and a new Sunday school teacher.  Eureka!  We finally figured it out!  I was present for the 3 hour audiologist eval, and it was crystal clear.  The poor kid can't understand approx. 40% of what he hears in a room with background noise!

 

This explains why he does so well on his schoolwork for me in our quiet house, and so poorly in his typically noisy classroom.  He can't understand what his teacher is saying.

 

The school is currently doing his level 4 RTI to get him qualified as learning disabled so he can receive auditory assistance in the classroom (FM system) etc.  One problem: our school system (Georgia) does not recognize APD as a learning disability.

 

Our school psychologist, who is very well intentioned, has suggested finagling a diagnosis of "mild autism" to get him the help he needs in school.  He's failing 3rd grade, and yet his standardized scores show 6th grade intelligence.  He may qualify for the gifted program and the learning disabled program simultaneously. 

 

The psychologist has suggested that "mild autism" may be to blame for our son's lack of social skills in school.  We think it's because he can't hear his peers talking to him, because he's perfectly conversational and friendly in one on one playdates in our quiet home.  If you put him on a loud playground, gym class, or in the lunchroom, it's like the "cone of silence" drops because he seems overwhelmed by all the noise, sometimes to the point of covering his ears.

 

We are tempted to go along with the "mild autism" diagnosis to get him the help he needs from the school.  Yay, bureaucracy!  We are concerned, though, about possible detrimental effects on him later.

 

Will FERPA, the law governing privacy in educational records protect him?  He's our oldest, so we have no clue.  He's in third grade.  Will his high school and/or college even know of the diagnosis by the school (not a medical doctor) if we don't disclose it?  Does anyone out there with more experience see problems in the future we may not have anticipated?

 

Thanks,

 

GA Mom

[bettyandbob]

Um   NO

 

If your ds is not autistic do not seek an autism diagnosis. You have had testing done. You have shown the school's approach is not appropriate. They know what your ds needs. 

 

The student's placement and services are not driven by the student's label. This is part of the federal law. Regardless of label the student is supposed get a placement that meets his needs not the generic needs of a particular label.

 

You might consider posting on the special needs board. 

[wapiti]

You may want to post on the Learning Challenges board.

 

Personally, I'd be reluctant to accept such a diagnosis if you feel it is incorrect, and it sounds like that might be the case due to the APD.

 

If you haven't already, I would do private testing - or have a consultation based upon scores you already have - with an ed psych or neuropsych who specialized in twice-exceptional (2e) kids.  Expertise in 2e kids is critical.  The psych should be able to write up recommended accommodations or services in the report for the school.

[Crimson Wife]

Under IDEA you have the legal right to an independent evaluation by someone of your own choosing. I would push for a full neuropsychological eval because that should be able to clarify the issues that he is struggling with. It's possible that he could have something like Non-Verbal Learning Disorder in addition to the CAPD. There is a lot of controversy over whether NVLD should be considered part of the autism spectrum or not, but it might explain a kid who has some autistic tendencies but not others.

[dragons in the flower bed]

An autism diagnosis can prevent your son from getting medical care under the policy of several health insurers. It will follow your son around forever. I would never ever agree to have a kid falsely diagnosed.

[Anne]

Another voice from the "Don't Do It" camp.  

 

You may have to put your Momma Bear hat on for this one - but your son is worth it!!!

 

Anne

[Mom2TheTeam]

There is no way I would allow a false diagnosis.  Whether it is supposed to be private and sealed or not, it can and will follow him everywhere.  No way, no how. 

[Caroline]

Won't they use OHI (other health impairment) to do the IEP? I teach high school in GA, so my students tend to already have an IEP in place when they get to me.

[bettyandbob]

It is my understanding that Federal Law now allows school systems to use the term "child with a disability" without a specific label. Honestly, this would be a better description of my ds than the label our school system gave him. He has down syndrome, but his IQ was too high for the ID (intellectually disabled) label and I wasn't going allow the ID label when he was young because labels can be incredibly limiting. The principal suggested "child with a disability", but the psych was afraid of it (no one in our district had used it before). The psych suggested LD since ds did have a qualifying discrepancy between IQ and achievement. 

 

Anyway, I know that if ds had had the ID label, I would have been railroaded toward a self contained ID class with no interaction with typical peers, possibly a self contained school. By staying away from the ID label I was able to get a placement that fit my ds better. 

 

If you don't believe a label fits your dc do not accept at all. It will stay with the child. Are school personnel even qualified to diagnose autism. 

 

You might want to check out the Wrightslaw website. 

[OneStepAtATime]

I agree with PP.

 

1.  Post this question on the Learning Challenges board.  There are a lot of parents there that have gone through this and can help.

 

2.  Get an evaluation through a neuropsychologist trained in assessing and evaluating 2e kids (not just from the perspective of a 504/IEP mentality).

 

3.  Understand that the school is coming at this from a different perspective.  Their primary goal is to find a way for your child to pass grade levels and keep moving through the system.  Their primary goal in doing assessments and assigning labels is not to evaluate your whole child so he thrives as a person in the short and long term, assessing all his weaknesses and strengths.  And they don't usually have the training, experience and expertise for an evaluation like that anyway.  However, you need, as a parent, a full, clear accurate picture of all his weaknesses and strengths, as much as possible. to give him the best chance at a well-rounded education AND a fulfilling life.

 

Sort of Short example:  My DD's assessment through the school was limited in scope and actually was a misdiagnosis of her issues in many respects.  They tried.  They just didn't have the training and experience.  And I was too inexperienced to know better until I started doing research on my own.  The evaluation also gave us nothing in the way of strengths, only focusing on the most obvious weaknesses.  It also really didn't help much with remediating my child's weaknesses, it just helped the school to find accommodations to move her through the system.

 

 When we had a more thorough evaluation outside of the school, we were given a much fuller picture of her weaknesses and what to do to help remediate (and accommodate where necessary) those, but we also found that she has tremendous strengths in 3D spatial relations (among other things).  This helped enormously with how her teachers (while she was still in a brick and mortar) and then I (once we started homeschooling) approach teaching her so that she doesn't just survive, she taps into this and other great strengths.  Knowing this also helps with looking at possible career paths and areas of interest to pursue where she might truly thrive (such as art, architecture, piloting, neuro-surgeon, electrician, Broadcast Engineering, etc. - all areas that the ability to see complex systems in 3 dimensions in your head are a real asset).

 

4.  Finally, don't have a label assigned that may not fit at all.  There are so many reasons why that is just a bad idea.  I understand why the recommendation was made, but you shouldn't have to do that to get the school to help your child.  Once you have a clearer picture of all the issues and strengths, then you can come back to the school and work to educate them on the best course of action for your child.  You might was to read The Mislabeled Child by Brock and Fernette Eide to gain some perspective on this.

 

Best wishes to you and your family.

[Tiramisu]

I also hope you post on the LC board.

 

APD is considered almost universal in kids on the spectrum. If there are social skill issues, too, I would not ignore it, even though it looks like it could be explained by APD. Depending on where a kid is on the spectrum, the signs can be rather subtle on the outside but significant for them internally. I'm saying that as a mom of a kid with APD who sounds a lot like your ds. She is not on the spectrum and is thankfully functioning fine, but she has more spectrum traits than I realized, that if I had known earlier I could have had a better awareness and learned how to help her with her difficulties. 

 

Since this was brought up as a possibility, I wouldn't ignore it. But you need someone properly qualified to rule it out, and not just go with the school psychologists judgment of this. 

 

ETA: Yes, it's secret. It's not on high school transcripts. The ACT/SAT accommodations are secret. College accommodations are private. Certain people at the office of disability services will know the exact diagnosis in order to decide on the most helpful accommodations, if you decided to go that route. But even after that, a student decides which classes he will need accommodations for and takes letters to the professors which indicate the accommodations but not the dx. 

[QueenCat]

Will FERPA, the law governing privacy in educational records protect him?  He's our oldest, so we have no clue.  He's in third grade.  Will his high school and/or college even know of the diagnosis by the school (not a medical doctor) if we don't disclose it?  Does anyone out there with more experience see problems in the future we may not have anticipated?

 

I'm not sure if it shows up on the record for the college or not. Ds told the college he has autism so he was straightforward. It did not prevent him from getting full merit scholarships or admittance. He does get a bit of help from the Office of Disability Services.

[QueenCat]

An autism diagnosis can prevent your son from getting medical care under the policy of several health insurers. It will follow your son around forever. I would never ever agree to have a kid falsely diagnosed.

 

Some insurance companies don't cover autism specific services. Many states require that they do cover autism related services. Each year, more states require that autism related care be covered. Hopefully, it will be all before too long. However, that does not mean that they won't get medical care for other medical conditions, such as strep throat or a broken bone.

 

However, I would  shoot for a correct diagnosis..........