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Is it possible that he no longer has an ASD? Or was mis-diagnosed in the first place?

1K views 14 replies 9 participants last post by  Tigerle 
#1 ·
There have been some thoughts in my head lately about this, and I've been afraid to speak them aloud. I have noticed such huge changes in DS (9) in the last six months or so, and I don't know what to make of it. He was diagnosed with PDD-NOS last May, and was said to be "just on" the spectrum. It was sort of a surprise to me...I mean, he was always very spirited and had intense interests in certain things, but I never really saw it as an issue. Frustrating, yes! He is an only child so I never really had anyone to compare him with. Anyway, we asked for him to be seen by the psychologist with the school division because of some emotional issues that concerned us, and blah, blah, blah, eventually he was diagnosed with ASD. I'll try to get to the point, if there is one...maybe I just need to say all of this "out loud"!

We moved to a new town in June. Since we've come here, we've gradually noticed a new maturity level. He's much easier to talk to and reason with. I can't remember when he last had a meltdown. Things are going very well for him at school. He's taking responsiblity for his work more than he ever has before, and is enjoying school (big breakthough)! I don't know...it's hard to articulate some of the changes that have taken place...he's just "easier" somehow. He still has SPD-type issues with food and clothing, which are easy enough to deal with. Again, frustrating to me, but manageable. He'd still be a bit on the quirky side, maybe, but he's got friends and seems to be getting along well with all the kids in his class.

This is the first school year with the diagnosis, and I couldn't be happier with the way things are going. He has an EA in the mornings, but from what I understand, she divides her time between him and another child, and both really don't require much. His teacher has given him things to help keep him still...like a band to push on with his feet and a thing to keep his hands busy. Nothing major...just little accommodations, that really should be available to all kids who need them, in my opinion, diagnosis or not.

A year ago, when ASD was first alluded to, I took DS to our ND, who did a hair analysis and found some wonky nutritional issues. She prescibed digestive enzymes (which elevated his behaviors for a couple of weeks before he settled into a new, more focussed self) and some other supplements. I'm wondering if that is what is making the difference now...his body is now more able to absorb the correct nutrients in the correct amounts, and is catching up on the deficiencies? We are due to go back and have a follow-up hair analysis done, but just haven't got there yet. I'm really interested to find how things look now!

He has been on Feingold since he was six, and we definitely noticed a difference when we started that, and have stuck to it pretty close, but even that seems like it's becoming less important to his behavior. I used to be able to tell if a teacher had given him candy at school, but now he seems to not be affected if he only has a little bit here and there. We still mostly stick to FG at home because it's just better for all of us, but I don't have to be so vigilant when we're out anymore. Is he just growing out of those sensitivities?

And then the really crazy idea. Is it the water? Up until now, we lived in a town or on an acreage with horrible drinking water, and have always had bottled water. Number 7 plastic. I remember reading something a few years ago about studies done that found a possible correlation between BPA and Autism, ADHD, etc. in children...can't seem to find anything now, though. Anyone know where I could look at that? Our new town has better tasting water, so we ditched the bottles and now drink tap (filtered through the fridge). Could it be the change in the water?

I'm sorry this got so long, and thanks for hanging in there if you made it this far! Could any (or a combination) of those things have made such a difference? Could it be just maturity? Can I just leave the diagnosis as is, because of the more understanding and gentler way he's dealt with at school? Should I seek to have him re-evaluated at this point? Am I just crazy to think that such a thing could be? We don't have him in any special programs or anything...looked into a social skills class, but it wasn't right for him. The only thing that might change would be the way the school "sees" him, and quite frankly, I like the way things are going now! They try to see things from his perspective and come up with a plan that works for everyone. Maybe that's the way this school does things anyway, but that's not the experience we had at the previous school, so I'm a little leery. Anyway, I'm rambling. Has anyone been in this situation?
 
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#2 ·
Quote:
Originally Posted by Trac View Post

Can I just leave the diagnosis as is, because of the more understanding and gentler way he's dealt with at school? Should I seek to have him re-evaluated at this point? Am I just crazy to think that such a thing could be? We don't have him in any special programs or anything...looked into a social skills class, but it wasn't right for him. The only thing that might change would be the way the school "sees" him, and quite frankly, I like the way things are going now! They try to see things from his perspective and come up with a plan that works for everyone.
so right now he gets accommodations for ASD at school, school is going well, and you are asking if you should get him re-evaluated with the possibility of removing the dx?

no, removing the dx isn't a good idea. Little accommodations are NOT available to kids without dx's. And the situation becomes more extreme as the demands of education increase, because what is expected of children increases every year, but a child with even mild special needs is on their own time table for development.

I hate to be negative, but nine is usually a pretty easy age. I wouldn't consider yourself out of the woods until after he goes through puberty and has successful transitioned to high school. I wouldn't assume that because he's doing OK in elementary school with a few accommodations that he will make the transition to middle school smoothly. It's great that things are going well right now, but it may just be a breather before the next storm.
 
#3 ·
I've read that anyone who appears to "outgrow" Autism was misdiagnosed to begin with. It's possible that sensitivities and deficiencies were causing symptoms if they are truly gone. But I agree with not having a reevaluation at this point, particularly if you would not be happy with the schools reaction. Also, I've read posts where they accepted a diagnosis that they felt wasn't quiet accurate because it got their child services that they thought were needed--such as having an "Autism" diagnosis instead of an "Asperger's" diagnosis because accommodations/services were only available for an Autism diagnosis.

"If it ain't broke, don't fix it."
 
#4 ·
My nine year old was just diagnosed with Aspergers ( this month actually). He has gone through periods where I questioned whether or not he even had aspie behaviors at all or if it all came down to sensory/ gifted stuff. After going through a really good period here , he is having a huge increase in meltdowns/ shutdowns and extreme frustration and anger ( never ever has there even been any indication of violence or anger in his outbursts before). This coincides with more body odor and body changes and I just feel like it may be an increase in behavior due to hormonal surges. I would keep the supports there for another year or so, since they are working so well for your son.... and just watch through he upcoming growth changes and such. It is nice to have the extra supports in place.
 
#5 ·
As we use supplements as well, it sounds like the digestive enzymes are working but not enough as you mentioned a clothing and food. Maybe consider getting food allergy and sensitivity testing done so that you know specifically what his body is having an issue with. Does your family have thyroid issues, depression, vision-RP, diabetes? Maybe check into Mitochondrial Dysfunction.

FG is a good start but it sounds like you are ready for the next step.

In regards to his age, you are on the cusp of puberty which can be a difficult time to go through, may old behaviors and symptoms re-appear because of the hormone changes which also affect the immune system, cell energy, and gut, etc...

Maybe you moving also removed some toxins and allergens that may have been setting his body off as well, something to consider?

I think it would be a misdiagnosis if he has medical issues that when addressed resolve or control the symptoms which happen to be on the DSM-IV checklist for this diagnosis.

Warrior Mom to Nick and 3 more Amazing kids!
 
#6 ·
I have to agree with what others said- just because things are going well doesn't mean his doesn't have the diagnosis. My step son was diagnosed at 8 with AS, ADHD, and anxiety and we have had up and down times before and after.

We have had other people tell us they didn't think he had it... mostly school staff who didn't understand his accommodations, or family who wanted to blame us for his behaviors.... but it's always been really clear to us. I think AS/HFA is a really hard one because they can behave so differently depending on so many factors.

My DH hoped for a long time that the diagnosis was wrong because he struggled to put the son he knew and loved into a new context and understand his behaviors in a new way; but over time he has been working to let that go.

Be grateful that you are having smoother time of things and that for now you have the right combination of supports in place.
 
#7 ·
Thank you all for your thoughts. I guess I've just been wondering, because we have always had our share of good days and bad days, and good/bad weeks, but it has been such a long "good" stretch (roughly 6 - 8 months), and especially coinciding with a move to a new town, school, and lifestyle. I really expected him to be having a tougher time with all of this, and it's turned out to be better than it's been in a while! I do have reservations about his diagnosis...I wonder about a lot about my answers to their questions, and how much they weighed in on the final decision. I was going on my own (somewhat faulty) memory for his early years...DH wasn't able to be there for the interview. Maybe my answers weren't always complete, and would have made a difference...yes, he did line up his cars and trains side by side, but he also pulled them out of the line to drive them around the tracks/road. Is that different? I looked back at some video tapes of him (preparing to have them transferred to DVD), and I see a social, interested little guy that looks just like every other kid. Those are only snippets of time, but I see nothing! And honestly, the thought never even crossed my mind back then. Even after being diagnosed, and after all the books I've read about ASD, I'm still not sure that it feels "right." I know that ASD manifests itself differently for different people, and yes, there are some things that fit, but wouldn't those things almost always fit? I'm still trying to figure it out. And I know it could all change tomorrow! Sigh.

Thanks, oceanbluemomma...yes, my family has issues with thyroid, depression...I will do a little reading re: Mitochondrial Dysfunction. That's another thing: the children's services centre where DS went for evaluation asked us to see a pediatrician "to rule out any medical reasons," but all he did was basically lecture me on parenting practices (123 Magic, etc.). Never even looked at DS while he asked me questions "about" him. I was so angry after that fiasco!

This has turned into a vent...sorry!
 
#8 ·
We've been through this with our eight year old. I have a hard time with his diagnosis, he's had several including ASD. The last one, and probably the most accurate, was ADHD and mild SPD. But, at one point, 4 or 5 years ago, he did fit the criteria for PDD-NOS. I still have an evaluation around that basically says, DS's preschool teachers and DH and I are all in denial the severity of DS's social delays, sensory issues, and lack of imaginary play. Yet, I have videos of him from the same month of the evaluation where he is playing an elaborate game of make believe with his best friend. I can't understand half of what he says on the tape, but he's clearly engaged with his friend. Yet, in other videos he's clearly jumping up and down (stimming) as he is watching a video, but is having a conversation with me about the video we are watching and is constantly referencing me. I just don't know.
 
#9 ·
It is a puzzle, isn't it? Same with DS on the "lack of imaginary play." "Did DS ever play with action figures?" No, not really...he never seemed all that interested in them (probably because we were mostly tv-free),so he never really HAD any. But when he's playing with his friends outside, there are elaborate dinosaur hunting expeditions through the forest, or the building of "settlements"... led by DS. Parents of DS's friends have commented "Wow! I love your DS's imagination, and the great ideas he comes up with!" Maybe that's not the sort of imaginary play that they mean. I don't know.

I guess, when it comes down to it, the diagnosis maybe doesn't matter that much. I concede that he does have some issues and I'm thankful that he is able to receive help with those things, and most of all, I'm thankful that his diagnosis encourages his teachers to use gentler and more understanding methods with him at school. Their teaching methods are more in line with my parenting methods now! However, I don't think that I can, at this point in time, rule out the possibility that his issues may be caused by something that we haven't figured out yet, given the changes that come along with these other "tweaks" that we've tried.
 
#11 ·
We do see a ND, which is where I got the enzymes and supplements. Sometimes it feels like I need to "lead" her, by asking questions about things I've read online, though. I wonder what questions I'm not asking, lol, and what other tidbits of information I could tease out! We are in Canada, near Edmonton, AB, if you have anything about that. Thanks!
 
#12 ·
Try this listing:http://www.autism.com/pro_danlists_results.asp?International=true

I do not know any of these personally, but will post around to see if anyone know. The ones on this list have gone to training on biomedical = supplements, vitamins, gut issues, neuro, etc...they are trained to treat the medical issues that cause Autism like symptoms, ADHD, ADD, depression and more. Now not each one is equal in "awesomeness:)" so you need to do some research to find out who rocks and not. A good place to check is your local conferences - see who is speaking. They usually are up on the newest info and make the biggest impact in the community. It is always great to be with someone too, who knows exactly what you are going through. I always hated going to the new med school graduate ped who had no real world experience, because they were not a parent. I can read the books myself, but to have someone who walks in my shoes is even better:)
 
#13 ·
My son with ASD is quite young compared to many of you (almost 3), so I don't know if my insight will help at all, but I do notice times like these. I know that DS2 was most definitely born with ASD as he has always been displaying symptoms of being developmentally delayed. But things do get better with treatment, and occasionally we regress. He began speaking recently and with GF/CF diet and supplements, as well as lots of early intervention, he seemed "normal" for a while. Mostly everyone was expecting him to be a "wild animal" (which I took offence to, yes, people actually said that to me). But now we are regressing a bit into more stimulating behaviors that had previously disappeared, he's becoming more violent, etc. We've gone through stages of progress and regression since birth. I am having him reevaluated in a few weeks, as he was originally on the low functioning end of the spectrum but has made great progress since his diagnosis over a year ago. I don't know if we'll ever have our label "removed" (as I do believe his issues are genetic, was never vaxed, avoided all "triggers" etc) but I don't know if I'd want to.. because he does receive some "special treatment" at school which helps him learn better and his teachers are much more understanding.
 
#14 ·
Hitting and rage are tell tell signs of gut issues -yeast overgrowth, impacted bowel, strep in the gut, biofilm. If you haven't read the "Gut Brain Connection" book it is outstanding at explaining this. A stool analysis collected over 3 days (Great Plains Lab) is outstanding place to start. Anytime any child has regression, this is a great place to start to answer why. Then blood work to check strep and CBC, thyroid, food and environmental sensitivities and allergies.

Labels are a double edge sword for sure, you have to do what is best for your own kiddo.
 
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