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Discussion Starter · #1 ·
I'd be interested in any advice anyone could offer about this situation.

For various reasons that would take forever to explain (I could practically write a book about this), I'm starting to suspect that DD's ASD diagnosis may not be entirely accurate. Lately I'm more and more suspecting that what she has is actually some kind of acquired brain injury, either from an early vax reaction, birth trauma from being induced a month early w/my preeclampsia, or as a side effect of her wacky GI issues. Her symptoms have had a host of subtle changes lately that are causing me to doubt that this is typical autism. One example is that she has acquired a willingness to be social with adults despite her continuing language issues and she's no longer at the point that people can obviously tell that she's not NT at all unless they try to talk to her. She doesn't flip out on the drop of the hat like she used to and she doesn't seem as affected by sensory issues as she once did. Again, I could ramble about this forever.

What I wonder is whether or not it matters. I could start trying to hunt down a pediatric neurologist to discuss these concerns with and see if they wanted to run an EEG or MRI or whatever the test would be, but those tests would stress DD out and I'm not sure it would change anything. Regardless, she is still significantly developmentally delayed. She still needs speech therapy and the special needs preschool. She still needs the special diet for her GI issues. I am doubting that the approach would change much based on the exact label. Probably a lot of kids diagnosed with ASD have some kind of brain injury involvement and it seems like it would be treated the same. And in this case, it isn't as if one label is better than another.

I haven't been able to find much info about what to do if I'm right. The only thing I've seen is that maybe she would benefit from hyperbaric oxygen therapy if I'm right, but we could pursue that anyway since it's commonly used for just straight "autism" also. I haven't found a whole lot about medical therapy for brain injury but it doesn't seem like there's something drastically different there. I could see it maybe being an issue for medical insurance if we switched providers and had one that started fussing about treatment for "autism" but that's not an issue right now.

How important do you suppose it is to have the exact right label? Does it make a difference whether the exact diagnosis is ASD or acquired brain injury? WWYD?
 

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I am going through diagnosis drama with my dd also. The only thought I do have is that you don't want them to take away a label that's helpful as far as getting approved for treatments. But I definitely think you're on to something- she sounds like she's improving and that's awesome!!
 

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How would you know if it's an incorrect dx or recovery via all the interventions?

Sometimes I think that I must have been wrong. DS is so much closer to NT now... But then I know what interventions we've done, and I know that there was a positive difference afterwards...

I have a list-mate on my one of my local autism groups whose autistic tendencies completely disappeared after she healed his gut issues. He isn't even on any supplements anymore, and has no diet restrictions. She is going to get him re-diagnosed now to remove the label. But she didn't do it until she was confident she no longer needed the access that the label bought her son as far as services.
 

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I was very interested in your thread because you brought up a question I've been thinking about in the back of my mind. My question has risen for a different reason, however. My DS hasn't improved that much lately, but as I become more familiar with the fact that he has delays, and am working with him on these SI exercises that our O.T. has given us, I'm seeing that he has neuro delays that I know are typical of brain injury. I am/was a physical therapist and I used to work with patients with stroke and brain injury often, though rarely children. I never noticed before that DS has such rigid tone, total extensor pattern, weak trunk muscles, and limited balance. In fact, it blows me away because he's my own kid and I never picked up on these things. Granted, he is very good at compensating, maybe they all are. The only trauma he has experienced was that I was in a car accident a week before he was born. There were no signs of anything abnormal at the time, but I don't think a small degree of pervasive brain damage would be detectable in a fetus. He has SID with fine motor and motor planning delays, and Asperger-type social issues. I don't know if these tone issues, etc. are typical of many SID kids so that maybe he just has the whole gamut of things you typically see with that Dx. I also wonder if it matters, as far as treatment. But I feel pretty sure, from my experience, that you would not get better benefits if you went with a brain injury Dx because generally after about 6 mos. insurance usually assumes a person has progressed as much as they will from therapy. When I was practicing, we pretty much got patients with a Dx of cerebral palsy as the catch-all for various forms of in-utero BI or BI shortly after birth. Also, I am not familiar with dietary interventions, etc. being effective for people with definitive BI, like it can be for ASD.
I also agree with SoVeryCherry that maybe your DD is just improving from your choosing the right interventions for her. My older DS had a Dx of ADD last year. This summer we did a gut-clearing diet, and I wonder now if he would still get that Dx if they re-evaluated him. His attention is so much better.
 

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Discussion Starter · #5 ·
Quote:
How would you know if it's an incorrect dx or recovery via all the interventions?
Hard question. We are doing a lot of interventions and a lot of them have helped. As I've posted in the past, she's a big gut kid and she's been blossoming as her gut begins to heal.

But her symptoms are changing. The more "autism" kind of symptoms like extreme social reluctance, lack of eye contact, etc. are fading and the other stuff is becoming more glaringly obvious. She's making attempts to communicate and the words come out all garbled. She has trouble understanding long strings of words. And the weirdest thing is that she wants us to draw pictures for her. She'll ask for a crayon and paper but then get frustrated and upset if she is asked to draw herself; she wants someone to sit next to her and draw pictures that she requests. She seems unable to even draw a simple circle and she starts crying if I ask her to try.


The reason I have been mulling a new diagnosis is I'm getting frustrated with therapists trying to blame everything on autism. I'm really concerned about this drawing thing, for example. I think there is something more going on there than sensory issues, but it is being blamed on sensory issues nonetheless, like the pressure required to make a mark on the paper with a crayon. But the same thing happens in every type of art I try to do with her no matter whether it's crayons, markers, paint, etc. Similar with the speech issues. I get so frustrated because even the speech therapist that has seen her several dozen times doesn't seem to grasp the way DD processes language and it really seems like they are using a cookie cutter approach. This is the problem with "labels," I guess. I'm just pondering whether it would be reasonable to expect anything to change in that regard with a more specific diagnosis. If I proved she had some kind of brain injury, would that change anything? I'm guessing not. It may be that I just have to call another IEP meeting and be more aggressive about getting her more specific therapy. But even then it might help to get more documentation about what we're dealing with...so hard to decide.
 

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Has she ever had a cat scan? I would think if you're worried about possible brain injury, then that could definitely be beneficial. Because a brain injury is so different from ASD, and the treatments as she gets older DO vary so much, I would pursue it until I got a definite answer. A pediatric neurologist consult might be in order.
 

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JBAmom - Those types of physical issues you mentioned can be a part of SID. I just finished completely reading "The Out-of-Sync Child" and it talks about those things.

krissi - This part I've quoted here sounds just like my daughter except for the receptive language part. She has apraxia which primarily affects her language, but also affect her fine motor skills some. She knew/knows that it's hard to color so she would often just want us to color for her. She has improved greatly as we have worked with her, but often we still have to push her a little to color with us.

I agree with the other moms that I'd be hesitant to change the label if it meant my child losing needed services. However, if apraxia is a part of it (and it is often comorbid with ASD and sometimes apraxia w/SID is misdiagnosed as ASD from my understanding) then getting that diagnosis would be useful. The speech therapy for apraxia is very different from typical speech therapy. I was very frustrated with our previous speech therapist who didn't know how to work with a child with apraxia. I ended up finding a private therapist to work with her. It has made a big difference I believe.

Quote:

Originally Posted by krissi
But her symptoms are changing. The more "autism" kind of symptoms like extreme social reluctance, lack of eye contact, etc. are fading and the other stuff is becoming more glaringly obvious. She's making attempts to communicate and the words come out all garbled. She has trouble understanding long strings of words. And the weirdest thing is that she wants us to draw pictures for her. She'll ask for a crayon and paper but then get frustrated and upset if she is asked to draw herself; she wants someone to sit next to her and draw pictures that she requests. She seems unable to even draw a simple circle and she starts crying if I ask her to try.


Similar with the speech issues. I get so frustrated because even the speech therapist that has seen her several dozen times doesn't seem to grasp the way DD processes language and it really seems like they are using a cookie cutter approach.
 

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http://www.crossroadsinstitute.org/

First of all congrats on the improvement!
I had my son re-evaluated by the behavioral therapist at our children's hospital because the school OT said he had SID. This was almost 3 yrs after he started recieving services and no one had mentioned it. At first I kinda thought she was just giving him a label but then I noticed some characteristics. I honestly didn't know. So I wanted to re-evaluate to make sure his dx's were correct.
He did not qualify for OT or ST services thru the hospital. At first she said he definitely would???? The suggestion on his final paperwork was to see a neurologist. I had so many mixed feelings. I came across this website in the process. I didn't go to the neuro. I think we are making progress and I am not sure where it would have made a difference for us. I did find the site to be pretty informative as I didn't know much about the brain mapping.
I will say that after having my boy in school, therapy, and working at home he has come a LONG way. He was dx'd as severe global delay and LD's. When we first started EI he could not talk, sit still, and had motor problems. I think I would try to find out if you have to have her dx changed upon the results of the neuro before you go. Good Luck!
 

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Discussion Starter · #9 ·
I don't think she would lose any services if the label changed. It wouldn't be as if the new diagnosis were of a less disabling condition, kwim? I guess it would be something to research more. I may hold off till she's older anyway because I think that she's still at a point that doing neurological tests would freak her out. Doctor's offices freaks her out except those that don't look like doctor's offices. I think she's always afraid we're going in for a blood test.


I do think the brain mapping stuff might be something we'll look into sometime. Very interesting! She hasn't had a cat scan or any type of neurological testing because she used to freak out if anyone or anything touched her head. That has diminished quite a bit but I think it'll be easier in six to twelve months to do something like that without her freaking out. Doesn't a CAT scan require sedation in order to be accurate? Or am I thinking of something else?

Anyway, this is definitely useful food for thought. I keep thinking at this point it doesn't seem like things would change all that much. We're moving soon though and I'm considering maybe taking her to a private therapist and having a speech evaluation done without telling the therapist about the autism diagnosis until they finish the evaluation...just to see what they say. It would be interesting to see if they come up with apraxia and auditory processing issues as the primary problem. It really is the speech and OT that I'm most concerned about having the right approach...
 

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Well, I can only give the advice my developmental ped gave me when I questioned whether or not Cait's diagnosis was correct.

She wanted to slowly wean services and supports first and see Cait go through a year successfully with no autism interventions or modifications in school and home. And switch just to auditory processing type supports (what we thought it was) If that was successful she would remove the autism dx. Within 6months of trying to wean/switch services we realized that the dx was correct.

However, this wasnt just because of the weaning of supports but the age. When Cait was about K she was doing really well and blended in pretty well with other kids because they were all still little. HOwever, as she got older her traits stood out a bit more and she started to need more supports again.

She blends pretty well now but I know she is autistic. She still thinks and processes the world as an autistic. She just has learned coping skills and tools to deal with it. Even if she doesn't look it to an outsider, her brain is still that of an autistic, but an autistic with wonderful tools.

Renee
 

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I just spent the day calling 30 audiologists to find if there were any who test for central auditory processing disorders, apparently there are only 3 within 30 miles of Portland. I would guess that a specialized audiologist might also be good to look for when you move. This type of audiologist would look at different things than a speech therapist because auditory processing is a different problem than receptive speech delay. Some kids would benefit from both audiology and speech intervention. My older son whose ADD symptoms are improving is also showing more obvious signs of something else that has been masked by his inattention. He is overall high functioning, but he is incapable of following a command that is 2 or more steps, and usually doesn't follow 1 step commands. Even when I know he is motivated and is now paying attention, he still cannot follow direction and it makes him very frustrated and angry. Now we understand why he has virtually never let us show him how to do anything. He watches very carefully, that is how he learns. Just a thought, maybe your DD is learning by watching you draw.
 

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Quote:

Originally Posted by krissi
I don't think she would lose any services if the label changed. It wouldn't be as if the new diagnosis were of a less disabling condition, kwim?

Doesn't a CAT scan require sedation in order to be accurate? Or am I thinking of something else?
Krissi,

I lurk here sometimes, and your post caught my eye. Even though the course of treatment would not change significantly, it is possible that the change in dx could effect her services later. Often TBI is seen as something that cannot be treated, or as a permanent state after a certain number of years post-trauma. Not fair, I agree, but that is the perception on the part of some school systems. One of my students was unable to receive certain services because he diagnosis was TBI rather than SID/ADHD following a re-eval.
:

As far as the CAT scan I don't think your DD will need to be sedated if she can keep still long enough. I think they wold only sedated her if she was moving around or likely to be claustrophobic.

Congratulations on the improvements BTW, that is awesome.
 

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Discussion Starter · #13 ·
Thanks for all the advice on this subject.

Of course I'm now back to wondering if I'm just wrong and what we're seeing is actually just autism with improvements in functioning. After all, because there is no one cause of autism anyway it could be that for her a lot of the symptoms are caused by medical issues. I can have myself half convinced it's something else. I have been reading up on aphasia the last few days and that totally sounds like her language processing issues. It takes great effort to create a verbal utterance longer than a couple of words and to understand longer utterances. But then I remember that doesn't explain the mood regulation problems and some other stuff. And facts remain that she does show pretty much all of the medical problems linked to ASD by DAN. So maybe I'm just completely off base here and the neurological problems are maybe caused by that instead.

I think I'm just frustrated with the therapy. I keep getting the feeling they're taking the wrong approach and working on the wrong things, and I have tried to talk to the therapists about it but it seems like they're all around clueless as to what IS the right approach. I really feel like speech therapy should be a bigger part of the picture for DD whose major challenge is in speech and language comprehension and that seems to be the root cause behind everything at this point. But the speech therapists keep focusing in on things that DD understands very well already and not having a clue on how to address areas that she doesn't. And then the OT is 100% focused on sensory integration when I think more is needed, particularly in drawing and handwriting. It was supposedly an IEP goal about eight months ago that DD would be able to copy a circle and she still can't except with assistance from hand-over-hand in which case she's not really the one drawing.

So I think I'm going to not seek a new diagnosis for the near future. We will probably do the neurologist route when she's a bit older especially since I do suspect some level of aphasia to be playing in. She'd still freak out about the idea of a CAT scan because she lacks the receptive language for me to explain it to her, so there's no way she'd sit still. In the meantime I'm going to look for a blind independent speech and OT evaluation in conjunction with our move (without mentioning the ASD diagnosis) and get a better action plan for how the therapy will proceed. Previously all evaluations (except the ADOS) were done with parent questionnaire because she was so uncooperative, but I am sure she could be evaluated and complete traditional speech and OT assessments now. A new audiology screening might be a good idea too!
 
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