Kailuamom
Phoenix
Joined: Jul 14, 2010
Posts: 654
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 Posted: Thu Apr 12, 2012 10:36 am Post subject: I'm just stunned........ |
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So, this has been a long and difficult journey with DS. It started with him having random, violent meltdowns in school that we couldn't eliminate with behavior management strategies.
My son makes eye contact, gives lots and lots of affection and has always been very engaging. When the first pdoc asked if I thought he could be on the spectrum, I said "no way".
The dr treated him like he had bipolar (which is how it looked) and the results were pretty crappy. We kept searching, and the pdocs question of ASD was in the back of my mind. Finally on a bipolar parenting forum, it was suggested that I come here.
Well. I did and at the same time changed doctors, this doc thought ASD was spot on. However, the Neuropsych testing we did said, no - definitely not ASD. Throughout this time school was a nightmare.
While here, I heard stories that sounded like mine, so we started doing the things that work for you, and found they worked for DS. I finally started getting really comfortable that he has an ASD. Life got infinitely better. As school was a nightmare, we decided that we needed to go to a "center of excellence" for diagnosis and recommendations so the school would listen to us. We got on the waiting list for Stanford..
It took a year to get in and have him tested. In that year, we changed everything. We are homeschooling, and life has radically improved.
Stanford tells us he's not anywhere on the spectrum, and that he doesn't fit into any particular diagnosis well, except that he has anxiety.
WHAT??????
They say that treatment is really the same, and that we need to treat the child regardless of the label.
Ok, that sounds fine in the moment, but when he is having a meltdown, and I say he has autism, people get it. Who gets a violent meltdown for anxiety? When he can't verbalized his emotional state, it makes sense for autism, not so much for anxiety.
When I read the DSM for anxiety disorders, one main criteria is worry. My son doesn't worry. I believe that he always has underlying anxious feelings, but not the worry self talk that seems to be primary for this diagnosis.
I'm really at a loss, where do we fit? What do I do now? What do you think?
I just don't get it.... |
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BTDT
Phoenix
Joined: Jul 27, 2010
Posts: 1007
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| Posted: Thu Apr 12, 2012 11:25 am Post subject: |
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That makes a lot of sense to me--you initial hunch about your son being engaging and making eye contact was right!
My wife had very bad anxiety attacks that led to meltdowns--she is now on SSRIs and hasn't had a meltdown in years.
Congratulations on sticking with it and getting a good diagnosis! |
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Sweetleaf
Metalhead
Joined: Jan 07, 2011
Age: 23
Posts: 14869
Location: Somewhere in Colorado
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| Posted: Thu Apr 12, 2012 11:30 am Post subject: |
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It depends on how severe the anxiety is....and yes it is possible to get more or less violent due to anxiety attacks. Kinda hard to control your reactions if you feel like your in complete danger even when your not....so it could be anxiety, But maybe you should get a second opinion if your really think there's more to it than anxiety, professionals can be wrong sometimes and I am sure there are others you could potentially talk to.
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It's like alice in wonderland except, my names not alice and this is the real world not a dream. |
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DW_a_mom
Ignoring the To-Do List
Joined: Feb 23, 2008
Posts: 9343
Location: Northern California
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| Posted: Thu Apr 12, 2012 11:39 am Post subject: |
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I can see how this would drive you nuts ... It would drive me nuts ... DON'T LET IT.
The most important thing is still your instincts, your son's instincts, and what you know WORKS. I realize the labels are very importat in getting outsiders to understand, but they are only labels, and labels have never been and never will be an exact science.
Maybe all of us here have the wrong label, who knows, the key is that we are getting through raising kids that rise above their challenges and we are doing it together as a community.
You are doing so well by your son. NOTHING. ELSE. MATTERS.
_________________
Mom to an amazing AS boy (plus a non-AS daughter). Have at least a few AS genes myself, although probably more NT than AS.
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Think of the greening of my name as an emeritus thing; I used to be a moderator but am retired and have no authority to act |
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momsparky
Phoenix
Joined: Jul 27, 2010
Posts: 2827
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| Posted: Thu Apr 12, 2012 12:39 pm Post subject: |
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What DW said.
You hang in there. You are a great Mom, and you are doing every single thing you can for your son, and that's what he needs.
I personally am highly skeptical of "generalized anxiety." I think that's what doctors say when they can't figure out what causes the anxiety, but that doesn't mean there isn't a cause. |
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Kailuamom
Phoenix
Joined: Jul 14, 2010
Posts: 654
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| Posted: Thu Apr 12, 2012 1:12 pm Post subject: |
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Thanks for the support. I appreciate it very much.
Rocking, toe walking, chewing, limited emotional language, special interests, All of those things seem so odd for anxiety, and at least to me hard to explain to people.
I don't know what my problem, but I'm really struggling. |
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Wreck-Gar
Phoenix
Joined: Jun 20, 2011
Posts: 950
Location: USA
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| Posted: Thu Apr 12, 2012 1:15 pm Post subject: |
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| Well, ASD diagnoses are very subjective as they are based solely on behaviours. Do what you need to in order to help your son and don't fret over the label. |
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BTDT
Phoenix
Joined: Jul 27, 2010
Posts: 1007
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| Posted: Thu Apr 12, 2012 2:43 pm Post subject: |
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It isn't unusual for folks with very rare neurological disorders to say they have MS, when they they actually have their disorder pinned downed via DNA testing as something else. For most people, the explanation "I have MS" is close enough to explain why you have trouble walking and have a disability license plate--they don't need or want to know the details. I'm sure there are Aspies who would disagree, but we are from another planet.
http://www.unitedspinal.org/msscene/2009/12/08/disorders-that-mimic-multiple-sclerosis/
http://www.sp-foundation.org/pls.html
Here is a rare disorder, Primary Lateral Sclerosis, with an estimated 500 to 2000 people affected with it in the USA. Works out to be one in every 200,000, much rarer than Aspergers. |
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Kailuamom
Phoenix
Joined: Jul 14, 2010
Posts: 654
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| Posted: Thu Apr 12, 2012 3:07 pm Post subject: |
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| BTDT wrote: | | It isn't unusual for folks with very rare neurological disorders to say they have MS, when they they actually have their disorder pinned downed via DNA testing as something else. For most people, the explanation "I have MS" is close enough to explain why you have trouble walking and have a disability license plate--they don't need or want to know the details. |
THIS!!!
This is what I seem to be reacting to. A quick one word label took the place of a million details and gave basic information which helped us manage in the world. Now, if we are told that simple one word shouldn't be used anymore, I feel lost. |
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momsparky
Phoenix
Joined: Jul 27, 2010
Posts: 2827
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| Posted: Thu Apr 12, 2012 4:11 pm Post subject: |
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| Kailuamom wrote: | | BTDT wrote: | | It isn't unusual for folks with very rare neurological disorders to say they have MS, when they they actually have their disorder pinned downed via DNA testing as something else. For most people, the explanation "I have MS" is close enough to explain why you have trouble walking and have a disability license plate--they don't need or want to know the details. |
THIS!!!
This is what I seem to be reacting to. A quick one word label took the place of a million details and gave basic information which helped us manage in the world. Now, if we are told that simple one word shouldn't be used anymore, I feel lost. |
I think, also, in the back of many of our minds (at least mine) is the specter of what-if-I-really-am-a-helicopter-parent and this-is-all-my-fault. I have to wrassle that one every time DS starts doing well and the school starts talking about taking away his supports (thus far, as soon as a support goes, we are given a painful and exacting illustration of exactly why the support was put in place, and I have to keep reminding myself of that.) That social pressure of "you're making it all up" isn't helped when professionals make a judgement that doesn't jibe with our day-to-day experience.
In 20 years, they will have a whole other set of diagnoses and interventions that will make today look like the dark ages. They'll have diagnostics that will pinpoint causes with much better accuracy than the current "Well, we think maybe it's ___________" Until then, we can only use the information that makes sense to us, even if it doesn't make perfect sense.
I so feel for all those "refrigerator mothers" of the past. |
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Wreck-Gar
Phoenix
Joined: Jun 20, 2011
Posts: 950
Location: USA
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| Posted: Thu Apr 12, 2012 4:12 pm Post subject: |
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| Kailuamom wrote: | | BTDT wrote: | | It isn't unusual for folks with very rare neurological disorders to say they have MS, when they they actually have their disorder pinned downed via DNA testing as something else. For most people, the explanation "I have MS" is close enough to explain why you have trouble walking and have a disability license plate--they don't need or want to know the details. |
THIS!!!
This is what I seem to be reacting to. A quick one word label took the place of a million details and gave basic information which helped us manage in the world. Now, if we are told that simple one word shouldn't be used anymore, I feel lost. |
I think you can still use it in a general setting. I've even heard parents say that they get confused looks when they say PDD-NOS.
Just save the official diagnosis for forms, etc, when it's really needed. |
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Kailuamom
Phoenix
Joined: Jul 14, 2010
Posts: 654
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| Posted: Thu Apr 12, 2012 4:24 pm Post subject: |
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Boy, momsparky, that says a lot too!
I feel so lucky that I have an older son with the same parents and life experience, who is well adjusted, doesn't have meltdowns and does fairly well in school. I say this because when they go down the path of parenting styles, I am able to say how we started out with typically effective parenting strategies, based on our eldest and then adapted to the more helicopter style, which is not of my choosing. Fortunately, they seem to hear me with evidence of the older guy.
Wreck-gar, you're right. I need to use whatever language necessary to help my child. That said, I want to do it in a way that doesn't add confusion. Hopefully, I can figure out supports for me so I can get comfortable with something. |
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Mama_to_Grace
Phoenix
Joined: Aug 02, 2009
Posts: 915
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| Posted: Thu Apr 12, 2012 10:22 pm Post subject: |
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| It is so frustrating. I recently went to a new lsw who tried to convince me my daughter just had "really bad ad/hd". Until we understand the genetics involved and can "see" them in a test, all the testing is subjective. You know what works for your son. You know it all a lot more than the folks who see a small percentage of him. If it really bothers you, contest their findings and drill down a bit more on the details. |
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ASDMommyASDKid
Hobbit
Joined: Oct 28, 2011
Posts: 1134
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| Posted: Fri Apr 13, 2012 12:30 am Post subject: |
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I agree with everyone here. Even with all the focus and attention on ASD, they really are in the Dark Ages from a medical perspective. Everyone is lumped in together (especially with the new DSM V) because they really do not know. We have certain things in common but they have no causes and the individuals are really very different from one another in many important ways. ASD is a catch-all, a form of shorthand and it enables some people to get a little bit of help.
Continue to use the shorthand with "civilians" when it suits you. The main thing is even when you think you know it is autism, that still only gets you so far. The rest is trial and error anyway. We are all doing that. So not knowing the exact label is not crucial if you can get a sense of what strengths and weaknesses you need to work with, and go on from there.
(By the way, I am Aspie so not knowing stuff precisely and accurately drives me really nuts, myself. It annoys me to no end that I can't know anything more specific than a catch-all and that it with a child with a formal ASD diagnosis. I can imagine how difficult this is for you.) |
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Kjas
Onçinha
Joined: Feb 27, 2012
Age: 23
Posts: 5196
Location: the place I'm from doesn't exist anymore
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| Posted: Fri Apr 13, 2012 11:21 am Post subject: |
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I'm just going to mention a possibility, it's up to you to decide whether this is accurate or not.
The thing is that ASD is a spectrum, quite literally. If your son is really right on the borderline between ASD and NT, most professionals are going to be unable or unwilling to diagnose him due to his NT traits. But that does not mean that is isn't on the spectrum.
If he is right on that borderline area, he is going to show some autistic traits (e.g. meltdowns) and some NT traits (e.g. eye contact). In terms of what they can tell you medically right now from neurologists (if he does happen to be right on the borderline), none of the current technology allows for a definitive yes or no on that front yet for those who happen to be too close to the borderline area.
With the public, if I were you, I would simply continue to say that your son has ASD. If that's the way they understand, then go for it.
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Diagnostic Tools and Resources for Women with AS: http://www.wrongplanet.net/postt211004.html |
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