Does anyone else see it as problematic if my son's testing gets put on hold for behavioral therapy?

Ceretta Sheppard - posted on 03/10/2010

Hi K,

you made perfect sense. I understand. I too grew up in a small town and it is nice to have family. If the OT is already working with him then more than likely he has a diagnosis - unless it's private pay. I too do not like the diagnosing which is why I am in private practice. However, I can't liken ADD/ADHD to AS. One of the reason's it's being diagnosed more is that people are becoming educated about it. I have a family member that has never been diagnosed, his mother knew something was wrong but not one of the doctors that worked with him could give her a name for it. YEARS later after I graduate college - I had a name for it which provided her a way to research and support him. Also, while I hate to say it, I do think it's increasing in numbers. I use to work as a therapist/consultant in Headstart (which is the schooling for kids prior to kindergarten) and I could see that more and more kids were coming in and the parents had no clue as to what was wrong but knew that something was not on task with developmental levels.
I still have to stick to my guns and say that OT's should only be doing OT work - that does not include behavioral interventions. The help you receive for your son will vary depending on the state. Most states do allow visits to all of the professionals you listed. Other benefits include schooling options, daycare options (which include mommy days), financial support, medication support (which I don't always agree with), job support as they enter teens, etc.

oh I am new here and had to find this post again -- sorry for the delay in response

K. Erin - posted on 03/04/2010

I also distrust the diagnosing process, it's like autism is the new ADD...Way over diagnosed. I have ppl that have spent the last two years assessing him, that really know him and his problems and they are still working with him now...the only thing I might consider doing is finding him someone to work with him in the summer...or be educated to work with him myself this summer...I still do not see it as a priority to have him diagnosed.

K. Erin - posted on 03/04/2010

The teacher is also meeting with the OT 3 times a week to be educated on how to deal with his behavior. She's dealt with him all year and I think she's done a great job. When I spoke with the OT about testing him, she asked me what would change if he was diagnosed? And I couldn't respond...we will only medicate him as a last resort...she did tell us about an Autism conference coming our way in June and we are hoping to be able to go so we can be a little more educated. If my son is autistic, he is superior highly functioning. His behavior wasn't even an issue til about November of last year...and I honestly believe it was the IEP set for him. The IEP basically stated that anything he was too adamant about not doing, he didn't have to do...it sounds to me like they were trying to avoid his behavior and so I told them that and they brought in the OT. She wants to correct the behavior and the deficits. And I have to say that is way better, in my opinion, than correcting an entire disorder. I'm way past denial about this but just think...if the behavior that is putting him in the autistic category comes to a halt...is he still considered autistic? I know PDD is not something you can grow out of...but what if his behavioral issues are...then he wouldn't be a candidate for PDD, correct? It is only really evident that he may be autistic when he is shutting down and refusing to do his work...or to listen...he doesn't exactly have tantrums but you can't get through to him at all when he has shut down. Stress does that to him. And I really think what the OT has planned for all of us to contribute to is right on. I love my kid and I do want the best possible care for him, but we live in a small town...our jobs don't provide insurance...and the ppl here care for one another like a family. The school staff included. My kids qualify for state insurance but I've never saw it as necessary since the doctor only charges 75$ per visit...besides that I don't even know if state insurance will cover all the psychologists, neurologists, physical therapists etc. that is said to help autistic children. I just feel like I am doing what I can and that ppl are readily available to help him and us. And I still don't feel it necessary to get him diagnosed at all. I don't think I am being unreasonable...he will be tested at some point and if the school testing finds something then I will go further with it. I just think that with all the behavior modifications and education we are all getting, things will get worse before they get better, but they WILL get better. I don't even know if I am making any sense anymore, I know what I want to say...I think I've said it...please leave me some more feedback.

Ceretta Sheppard - posted on 03/04/2010

Hello K,

I am a Clinical Therapist that works with behavioral modifications on a daily basis. I truly understand your point of view, however, I agree with your family. A diagnosis changes his IEP and as you may know the IEP changes how the teacher respond to him. I don't know what type of school you have him in but the teachers themselves are usually at a lost without a correct diagnosis. They need to know what behaviors to look for and what behavior may be "normal". Yes I understand that many kids respond and react differently but it equips the teacher/school with knowledge. Secondly, it's nice that the OT help with the behaviors but that is not her profession (so he is not getting behavioral therapy) and you may be loosing valuable information that can benefit your child. That testing should link your baby to behavioral services and other possible resources. Lastly, you can have your child tested outside of the school and bring the information to the school. Check to see what behavioral services are available under your insurance. Most insurance companies allow testing once a year. When you sign up for testing - make sure that they know what they are testing for (soon all of this will be under autism) and that you will use the report they generate to build or revise his current IEP. In the state of Georgia, the school will not follow an IEP without proper testing. If you feel he is manipulating the tester let them know so they can be aware of this behavior prior to testing.

Jessica - posted on 03/03/2010

More than likely family members just want a diagnosis so they can better understand what is going on and so he (and you) can get all the help possible. Its great that the behavioral modifications are working for him. It might not make a difference if testing was done now, however, it could also make a big difference. What if he doesn't actually have PDD, but has something different that can be manange in a different way? Just follow your instincts.... usually moms know best!



By the way, I just found out last week that there is a way to test for PDD by bloodwork, if thats a option you want to explore.