WWYD - have DD tested?

[CAmomof4]

I'm not looking for a diagnosis on here, of course, I'm just wondering what other moms might do, if this was your child...I'll try to keep it relatively short...

 

My DD5 has some social issues.  She is extremely uncomfortable around both unfamiliar adults and unfamiliar children.  When uncomfortable, she goes into a catatonic-like state, where she stares blankly into the distance, won't look at anyone or anything, won't speak, won't move, etc.  Eventually when the discomfort is removed (i.e., the person leaves the room, etc.), she goes right back to being her normal self.  Occasionally she will throw herself into a crazy temper-tantrum if she thinks we are bringing her into a situation she won't like.  Then it's going limp, screaming wildly, kicking, etc.

 

She talks very very loudly most of the time, to the point where we are constantly telling her to lower her voice.  When she hears something she doesn't like, she covers her ears.  She does this at church, when they are singing, or sometimes if we're in a noisy crowd somewhere.

 

Although she was fully potty-trained by her 4th birthday, she has gradually begun to have accidents in her pants, for the last 6-9 months or so.  Not at night, only during the day, and I can't say for sure but it seems like she does it on purpose, even though she seems very upset after it happens.  Like she'll be playing in one room, then go into the bedroom and "have an accident," and only then start crying and go into the bathroom.  Or she'll be playing, then go into the bathroom, where she then goes in her pants, and five minutes later goes to sit down on the toilet.

 

DH and I have read online (--I know--) that some of these things could be signs of a high-functioning autism, such as Asperger's.  But there are other Asp symptoms that she does not display.  And like I said, this behavior is not constant, it only seems to be in stressful situations, other than the accidents.  And she has overcome it before, like when we tried to get her to go to Sunday School during church.  It went from refusing to cross the threshold into the room, to having me sit with her while she was catatonic, to six weeks later, now she willingly goes to the class by herself and seems to enjoy it.

 

So we have mentioned these behaviors to our pediatrician, who referred us to another ped. within the same department.  This other doctor is not a psychologist, just a ped. who is a "child behavior specialist."  She met with DH, DD, and I for about an hour a week ago.  DD sat catatonic and refused to speak the entire time, until at the very end she snapped out of it and told the doctor she drew a cupcake on her paper.  The doctor said she could not diagnose, blah blah blah, but it was her "suspicion" that this was an anxiety issue, not autism, since it was not consistent.  She gave us two options:

 

(1)  Move forward with a full autism diagnosis test, with multiple doctors, taking about 3 hours, while they try to watch her play and interact with her and ask questions and all that; the end-game of which is I don't know, even if she WAS diagnosed;

 

(2)  Bring her to a child psychologist, who will try to confirm that it is anxiety, and counsel her on ways to cope, like breathing deeply, squeezing a stress ball, etc., and will most likely try to do group counseling with other children.

 

We were thinking about choosing Option

 

(3)  Blow it off, relieved, try to help her cope on our own, and just not pressure her into uncomfortable situations, hoping maybe she will make progress and be more interested in group activities later on.

 

But I'm just not sure.  This week we have been trying to remove all stressful stuff, teaching her techniques, and nothing has improved.  Actually the accidents have been quite bad this week, 2-3 times a day.  I don't even know if that is related to the social thing.  I am very reluctant to pursue anything official, because (1) I hate to have DD think that we think there is something "wrong" with her, (2) maybe she is just very shy! (3) I am totally not open to inviting a slew of doctors into our business and having them start recommending that we medicate her, and all of the side issues that that could open up.

 

Of course I also want to do what is best for DD.  Any advice?  TIA if you read this meandering post.  :-)

[Cheryl in CA]

Edited to remove personal info :-)

 

All that to say that I would definitely investigate anxiety.  If anxiety is determined to be an issue (even if it isn't the only issue), I would want to find out why she is having anxiety.  I am so thankful that our Pediatrician didn't want to give my son medication because that would have just been treating the symptom instead of the cause!  He likely would have had some relief, but we'd still be hitting a brick wall because the cause would never have been addressed.  He is still behind in some areas but flourishing and catching up instead of still "stuck."

[MomatHWTK]

I wouldn't go with option 3.  You could start with treatment for anxiety and over time determine if evaulation for ASD is needed.  Your description sounded like ASD to me, but with deal with both anxiety and some level of either autism or PDD-NOS (aka "we think it could be autism but aren't willing to commit"). 

[freesia]

I would go the anxiety counselor route. Avoiding anxiety inducing situations completely actually makes anxiety worse.

[CAmomof4]

So, I guess you are saying that whatever it is, it won't go away by itself.  I was just worried that if we start taking her to all these specialists, saying "there's something wrong with my child," they are going to make sure they find something wrong with my child.  Do you know what I mean?  I don't know.

[Cheryl in CA]

I would go the anxiety counselor route. Avoiding anxiety inducing situations completely actually makes anxiety worse.

 

I think that depends on the cause of the anxiety.  We needed to keep my son out of anxiety inducing situations until the cause for his anxiety was addressed.  Before it had been addressed, it would have (and did when we HAD to put him in an anxiety inducing situation) made things worse.  Once the cause of the anxiety was resolved, he no longer had anxiety, and there were no longer any stress inducing situations (making for a very easy transition for him). 

[Cheryl in CA]

So, I guess you are saying that whatever it is, it won't go away by itself.  I was just worried that if we start taking her to all these specialists, saying "there's something wrong with my child," they are going to make sure they find something wrong with my child.  Do you know what I mean?  I don't know.

 

Without knowing what is wrong, there really isn't knowing.  From what you have described, I would guess that it will not go away on it's own, but that is only a guess. 

 

I understand your concern.  I'm sure there are professionals like that (though I would use the term "professional" with a grain of salt ;) ), but I would not avoid having my child evaluated for that reason.  If she is evaluated and you feel that is what they are doing, I would seek another opinion.

[Guest]

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[kbutton]

So, I guess you are saying that whatever it is, it won't go away by itself.  I was just worried that if we start taking her to all these specialists, saying "there's something wrong with my child," they are going to make sure they find something wrong with my child.  Do you know what I mean?  I don't know.

 

This is a very common fear and a strong barrier to receiving legitimate help--help that you may need to handle the problem. There are stages to work through mentally when you suspect something is going on, and I'd like to encourage you to realize you'll have moments of doubt. Don't let those moments convince you to sweep things under the rug. My son's issues were very inconsistent for a long time, so we were afraid of being laughed at or having him receive an inappropriate label. We also had some significant (but very, very common) misunderstandings of autism spectrum disorders. We did a lot of correct guessing about how to handle him without knowing anything, but during that time, we also formed some bad habits around things we didn't know how to cope with. It was also grueling to figure him out ourselves. Our experience of seeking help actually led to parental validation overall. If you find a clinician of some kind that is not supportive, you find another one (I know, easier said than done). 

 

Anxiety is part as parcel of many possible things, and it sometimes occurs alone. Either way, help is invaluable.

 

We were stunned at our PDD-NOS diagnosis, but it's been so helpful to have it. The older he gets, the more he grows, but the more we see the need for therapies and help from experts who don't have to reinvent the wheel. You are at a good age to work on a lot of things, whether you are looking at anxiety or a broader diagnosis.

[CAmomof4]

I want to thank you all for your words of encouragement.  Helps to know we're not the only ones going through it!

[PeterPan]

So, I guess you are saying that whatever it is, it won't go away by itself.  I was just worried that if we start taking her to all these specialists, saying "there's something wrong with my child," they are going to make sure they find something wrong with my child.  Do you know what I mean?  I don't know.

Yes, sigh, that's what my dh feels and gets frustrated by.  He thinks the whole thing is a racket.  But he's not with him all day and isn't trying to do things with him he doesn't want to do.  He hasn't worked in education with classes full of kids to have perspective on how the behavior compares to his age mates.  You (we) wouldn't have multiple professionals telling us to get evals for things if they weren't outside the norm.

 

I think in your case the thing to remember is that intervening is better than wishing you had.  It's better to get the evals and be WRONG than to have the problem continue, go through years of heartache without the right words, be frustrated, and then finally get them.  Your Mom Gut is NOT wrong.  It just isn't.  You've already had someone tell you what's probably going on, so going to a full autism center doesn't make sense.  A good psych can diagnose spectrum if it's there and catch other things as well.  Then you can decide what to do with that information.  The ARI (autism research institute) had a terrific webinar a while back on treatment options for anxiety.  You might like to listen to it.  There's a lot of research in psychiatry now (I know, you wouldn't expect!) into causes of the anxiety and interventions beyond counseling and meds.  Addressing Anxiety & OCD in ASD | Autism

 

I'll just tell you that untreated anxiety in a teen (or adult) is REALLY not pretty.  You REALLY want to intervene now, while it's easy, while she's still flexible, while you still CAN.  

[Ottakee]

Has the social stuff gotten worse or better over time?  Any major changes around the time the accidents started?  Are they pee or poop or both?

 

I would not ignore this as it isn't likely to go away.

 

Have you talked to the doctor about checking for a bladder infection and constipation?  Constipation can cause wetting accidents and is the first thing our peds urologist checks for (after UTI) as a cause for wetting accidents.

 

Is she scared to go into the bathroom alone?

 

[PeterPan]

Has the social stuff gotten worse or better over time?  Any major changes around the time the accidents started?  Are they pee or poop or both?

 

I would not ignore this as it isn't likely to go away.

 

Have you talked to the doctor about checking for a bladder infection and constipation?  Constipation can cause wetting accidents and is the first thing our peds urologist checks for (after UTI) as a cause for wetting accidents.

 

Is she scared to go into the bathroom alone?

Those are good questions for the op!  With my ds, the wetting seems connected with an inability to handle emotional intensity.  I read the book (It's No Accident) and wondered if it was constipation.  I don't know.  Definitely emotional overload here.  I sort of assumed that was at least part of the picture, but I agree it's worth looking into, talking with the ped about, etc.  Our OT eval confirmed the issue with the emotional intensity, and when we avoid that he's pretty stable.

[CAmomof4]

Has the social stuff gotten worse or better over time?

 

It is hard to say, as we have only recently (last 6 months or so) been trying to gently "push" her into doing some group activities.  She has always been shy, but of course we are comparing her to our older DD who is very boisterous and outgoing.

[CAmomof4]

Are they pee or poop or both?

 

Yes, both, and as far as I can tell there doesn't seem to be some medical issue there.  Most of the time she uses the bathroom normally.  If we are out of the house, and I take her to the restroom somewhere, she almost always does just fine, even if we are racing in there emergency-style.  She is able to hold it when she needs to.

 

It's typically at home where she has the accidents, no stressful situations, she'll just be playing or something and forget to go.  That kind of made me think it's just a distracted-child thing, not related to the social issue.  Like she just isn't paying attention.  She'll go into the bathroom needing to pee, and stand there making faces in the mirror for five minutes instead, and there you go, accident on the floor.

 

That was common for both my girls when they were potty training maybe at 3 years old, but they learned to stop it.  Or at least, I thought my younger one did.  Maybe she just never progressed.

[wapiti]

Those are good questions for the op! With my ds, the wetting seems connected with an inability to handle emotional intensity. I read the book (It's No Accident) and wondered if it was constipation. I don't know. Definitely emotional overload here. I sort of assumed that was at least part of the picture, but I agree it's worth looking into, talking with the ped about, etc. Our OT eval confirmed the issue with the emotional intensity, and when we avoid that he's pretty stable.

This is off-topic, but I've been meaning to tell you something interesting that I recently discovered about my ds and the wetting. If you recall, his history is complicated in that he started having accidents around 3.5 y.o., then had surgery to release the tethered cord at 5 y.o. last week I ended up giving him D-Mannose on a lark (something that has been in my cabinet for years but not for him; traditionally it treats UTIs). I haven't given him magnesium in several days and yet there has been no nighttime leakage whatsoever. It would appear that he may have had some sort of subclinical level of infection - he's had numerous urine cultures - well that's the only reason I can come up with for the D-Mannose to take care of this. What I still don't know is why the magnesium helped before.

[PeterPan]

This is off-topic, but I've been meaning to tell you something interesting that I recently discovered about my ds and the wetting.  If you recall, his history is complicated in that he started having accidents around 3.5 y.o., then had surgery to release the tethered cord at 5 y.o., and since then has bedwetting only if I forget to give him magnesium citrate.  Well, to make a long story short, in our odyssey of supplements for this PANDAS thing, which includes wetting as a symptom, last week I ended up giving him D-Mannose on a lark (something that has been in my cabinet for years but not for him; traditionally it treats UTIs).  I haven't given him magnesium in several days and yet there has been no nighttime leakage whatsoever.  It would appear that he may have had some sort of subclinical level of infection - he's had numerous urine cultures - well that's the only reason I can come up with for the D-Mannose to take care of this.  What I still don't know is why the magnesium helped before.

Wapiti, that's interesting.  When I googled it, Dr. Mercola's version came up with cranberry extract, probiotics, etc. in it.  Is that what you're taking or just d-mannose?

[wapiti]

Wapiti, that's interesting. When I googled it, Dr. Mercola's version came up with cranberry extract, probiotics, etc. in it. Is that what you're taking or just d-mannose?

I'm just using the D mannose powder, Now brand. It is sweet and will mix in anything taste free. I read someplace that the cranberry can be irritating for some people if they have too much, so since I am not ds (and can't sense what he feels) I thought it best to go with the plain.

[Jennifer132]

I can't speak to the accident issue. But I can speak to the social issue. IMO, whether you pursue further testing or therapy of some kind really depends on how much you believe this affects her everyday life. My son was 5 when he was diagnosed. He also withdrew in social situations. But he also became aggressive when he'd throw tantrums and we now know that was due to anxiety. We spoke with our ped, who referred us to a therapist. The therapist suggested an autism eval, and he did qualify for a diagnosis, however he is very high functioning. Sometimes anxiety can be a part of autism. Sometimes it stands alone. We never pursued meds for him, instead we did some social skills therapy 1:1 with a therapist and some ABA based social skills classes and anger therapy. Ultimately for him, changing his diet was the key, but therapy (and time) certainly helped.

[Jennifer132]

So, I guess you are saying that whatever it is, it won't go away by itself. I was just worried that if we start taking her to all these specialists, saying "there's something wrong with my child," they are going to make sure they find something wrong with my child. Do you know what I mean? I don't know.

I don't know if that's necessarily the case. My dd was having some anger/anxiety issues, and her ped basically told me that he thought it was within the realm of normal but we could pursue therapy if we wanted. Also, with autism, there is an actual checklist with criteria and the child has to meet a certain number of criteria to receive a diagnosis. So if your dd doesn't fit, the eval will show that.

[texasmama]

So, I guess you are saying that whatever it is, it won't go away by itself.  I was just worried that if we start taking her to all these specialists, saying "there's something wrong with my child," they are going to make sure they find something wrong with my child.  Do you know what I mean?  I don't know.

Haven't read all the responses but no, it won't go away by itself.  As I read the OP, my first thought was anxiety - SEVERE anxiety.  She may also be on the spectrum, as these two are often comorbid. 

 

Disclaimer:  I'm a specialist in the mental health field and have worked extensively with kids and families.  I never once, nor would any responsible professional, "found" something wrong with a child when there is not something wrong, any more than you would go to an oncologist and the oncologist would make sure to "find cancer".

 

Sometimes professionals are wrong.  Your dd is young still, and you kids are tricky to diagnose definitively because there are so many developmental stages that muddy the waters to getting an accurate diagnosis. 

 

The bottom line is that this problem is severe by medical/mental health standards, whatever it is, and it will not just go away.  In fact, it is likely to get worse if it is anxiety.  Now is the time to get a good evaluation and treatment/support.

[CAmomof4]

 

 

Disclaimer:  I'm a specialist in the mental health field and have worked extensively with kids and families.  I never once, nor would any responsible professional, "found" something wrong with a child when there is not something wrong, any more than you would go to an oncologist and the oncologist would make sure to "find cancer".

 

 

 

You're right - forgive me, I was referring more to the parent aspect than the doctor.  I know moms whose first thought when their 4-year-old wets the bed, or someone has a tantrum, or whatever the case, they automatically react as though it is the symptom of something larger.  Like their kid can't just have a bad day, or be behind in math, or...  no, they must have some "issue," and they rush off to get diagnosed and sign them up for ten types of medication or therapy.  And if the doctor says the kid is fine, well they're a quack, let's take Johnny off to someone else.  Then someone else.  KWIM?  Not meant to knock doctors OR moms, really, just a general comment on the times we live in I guess.

[texasmama]

You're right - forgive me, I was referring more to the parent aspect than the doctor.  I know moms whose first thought when their 4-year-old wets the bed, or someone has a tantrum, or whatever the case, they automatically react as though it is the symptom of something larger.  Like their kid can't just have a bad day, or be behind in math, or...  no, they must have some "issue," and they rush off to get diagnosed and sign them up for ten types of medication or therapy.  And if the doctor says the kid is fine, well they're a quack, let's take Johnny off to someone else.  Then someone else.  KWIM?  Not meant to knock doctors OR moms, really, just a general comment on the times we live in I guess.

I understand what you mean now.

 

Honestly, in my experience it is much more likely that people will downplay symptoms and not seek help for a myriad of reasons.  Seeking out help for your child can be a long and exhausting process.  It is no wonder that many people give up or never start.  Also, pediatricians are not always proactive at referring kids who could benefit from an evaluation, and moms listen only to pediatricians. 

 

I knew a lovely mom once who came to visit me to talk about homeschooling her kids because her oldest child had issues in school.  She brought all of her kids with her, and they were at my house for several hours while we talked and I showed her materials.  It was pretty obvious to me that her oldest child had classic ASD signs by the end of the four hours.  I threw up a trial balloon about one of the signs and she dismissed it.  She was not defensive, just unaware, and my association with her was not close enough for me to take it further.  So she didn't even know that there is something going on with her child but just knew that the public school was a bad fit.  She is a lovely and caring mom.  She just had no frame of reference.  And it is SO hard to see your own child objectively.  Impossible, in fact.  Even with many years of experience with kids in the mental health field, I missed some stuff with two of my kids through the years.  Not small stuff, either.  Everyone is okay now because when I don't know what is going on, I do seek out help from professionals, but the help was delayed because I had adjusted to the child's norm and didn't realize how far from the universal norm it had drifted.

 

(I hope any of that is helpful, OP.  You sound like a caring, wonderful mom.)

[CAmomof4]

And it is SO hard to see your own child objectively.  Impossible, in fact.  

 

This couldn't be more true!  Thanks texasmama.

[raptor_dad]

Anxiety and ASD sound like things to consider but I would also try to rule out selective mutism[1] with this presentation. It is comorbid with anxiety.

 

[1]  Here is a link http://www.selectivemutismcenter.org/aboutus/whatisselectivemutism Dr Google can certainly provide more...

[MomOfABunch]

I didn't read the other responses. I would definitely get an evaluation. If it's nothing, great, you can stop worrying. If it's something then good, you caught it early and you can do something about it.