To dx or not dx, that is the question....

[Petie1104]

OK, so here's the basics of what the debate is.

DD had to be dx'ed.  Her symptoms were so severe that we NEEDED help.

DS (9 yrs. old).  Has been unofficially dx'ed with multiple issues, but no official dx.  He was low-tone as a baby, was said to have SID by an early intervention specialist, OCD by dd's psychologist, and her psychiatrist (who has observed him frequently) thinks he may be on the high side of the autistic spectrum (there are more symptoms but too many to list), he also has developemental coordination disorder which is the only official dx he has.  BUT, he is extremely advanced, happy, and as of yet has no issues making or keeping friends, so he doesn't really have issues socializing.  His method of socialization is very strange, and he gets on adults nerves because he should be at an age where correcting adults is seen as rude.  Of course, he only corrects them on issues he knows.  Today, a child asked what the neolithic era was.  The parent gave a short, very wrong answer, and ds decided to go into a detailed explanation.  The adult was not pleased.  So in that regard it is affecting him and I'm afraid it will affect him more in the future. DH doesn't want to officially dx, and neither do I simply because I'm afraid it will affect his plans for the future.  He wants to do SOOOOO much, and I don't want anything standing in his way.

DS (4 yrs. old) is now starting to concern us.  When he was 2 I thought he was autistic.  He ignored sounds, played alone, and was very withdrawn.  Turns out his iron was so low that his brain was basically not able to function properly.  We brought his iron up and most his symptoms went away.  BUT, there are still quite a few still there, just not as pronounced.  If anyone other than dh and I or his brothers and sisters address him, he hides.  He rarely plays with other children and even then only when they initiate play and by his rules.  Today, he hid under the first platform in the playplace at the McDonald's for about 20 minutes until only he, and the other two little ones were in there, then he played until he was red faced.  Another 2 kids started playing after he had been there for a while and he basically ignored them.  As a matter of fact, he would push past them like they didn't exist, I tried correcting him and he just curled into the fetal position.  He is smart, but not advanced like his older brother, but he also has no interest in sitting down to learn, so I'm not concerned about that.  DH and I don't want to dx him for the same reason we don't want to dx the older ds. 

Ok so what's my point.  We dx'ed dd out of necessity, there is no necessity in dx'ing the boys.  DSS who is 13 is concerned though, and I don't want to immediately dismiss his concerns.  He is concerned that the boys (the oldest has been homeschooled for a while now and the little hasn't started school yet) are going to get bullied when they start school.  Ds (9 yrs.) will be starting school next week, once we have an address in our new state.  DS (4 yrs. old) will be starting next fall.  DSS is afraid that ds (9 yrs. old) is not acting like a 9 yr. old and is seriously lacking in social skills that are important once he starts school.  He is also afraid that next fall ds (4 yrs.) will have issues with his teacher and if his teacher doesn't know what they are dealing with, they may cause more problems rather than helping.  He thinks the teacher will try to pull ds into the activities and the groups and when ds tries to hide, he will get into trouble for it.  Now, as I said, we don't dismiss what dss says just because he's a kid.  He usually has really good points when he talks about his sibs.  He came to us and brought up the symptoms and said we need to get them dx'ed so that they are "protected" once they start school.  He says that older ds is going to have issues since he has motor skills issues AND his socialization is "off". 

So, here is the question, should we dx the boys or not?  I hate to get dx'es for another reason that I am ashamed of.  That means that ALL the children that dh and I had together are dx'ed with something.  So, what is wrong with us that we have children with issues rather than "normal" children. Don't get me wrong I LOVE my children.  I wouldn't change them for the world and if it wasn't for them having to actually function in a social area, then it wouldn't even be an issue.  But, this is an issue, so what would you do. 

DX or not DX?

[AnalogWife]

I'm leaning toward checking out the 9yo but not the little one.  The 9yo reminds me of some of the kids on Autism:  The Musical, but the little one doesn't seem too-too bad and you can just do it one step at a time. 

I wrestle with myself a lot re: dx's, but when I think about that movie (A:TM) it seems like the kids are happy to be involved in a program that focuses on their dx.  Having options and services is important to me, and that's what a dx provides.

[Linda on the move]

Your 9 year old could attend a social skills class without a solid dx. My DD (who is 14 and has Asperger's) went to one and it was one of the best things we've done for her.

When you enroll your 9 year old for school, I'd talk to them about it, about your concerns and the fact that you are open to accommodations available through an IEP or 504. Having this conversation could pave the way for something being done IF IT NEEDS TO BE. However, there is a thin gray line between "quirky" and "special needs" and he may just be quirky. How well he is able to cope with regular life without special accomodations  really is that thin line.  But my advice it to teach him better social skills -- don't expect him to figure things out. Just tell him.

I'd also tell your DSS how much you appreciate his care and concern for the younger kids. He sounds like a wonderful big brother.

[LynnS6]

For me, a diagnosis is a tool, just like many others. If the diagnosis will help me parent my children better or help me help my children succeed, then I'll seek an assessment that might lead to a diagnosis. If you think that your children will need accommodation, then I'd seek a diagnosis. I'd also listen to your stepson. He sounds like a remarkably articulate and thoughtful young man. He knows what kind of behaviors tend to get kids picked on.

We've had ds assessed twice: once for SPD (the "new" name for SID) and once for anxiety/tics. The assessment came back with definite "yes" for SPD, and he was in occupational therapy for 2 years. That was one of the best decisions that we've made. He gained so much in terms of coordination and comfort in his skin. The anxiety/tics came back "something to keep an eye on" but not as needing treatment at the time. For that, time has helped and he hasn't needed therapy. I don't rule it out some day, but I don't think it's necessary now. Both were cases where I knew that we'd done all we could as parents to address the issue and we needed an outside perspective to see if more would be necessary.

For your older ds, a couple of thoughts. First, the pp is right -- you don't have to have a definite diagnosis to do social skills groups. Ds has been part of social skills groups twice -- once in 1st grade and once now in 4th grade. I don't think there's a HUGE need for it, but he's not super socially skilled and a little help never hurts. I'm a firm believer that it's better to teach skills early rather than to wait until it's a major problem and then have to remediate.

Second, while you can warn the school that you've got some concerns, they aren't going to be able to put anything into place the day he starts. They need to observe him, document his issues, and possibly assess him. That will take some time. Hopefully the school will find ways of addressing.

Finally how could a diagnosis 'stand in his way'? Alternatively, how could lack of a diagnosis stand in his way? If a diagnosis leads to a better understand of how your son learns and understands the world, he can use that knowledge to help him achieve what he wants to achieve. I think people are often afraid that their children will get a label, without realizing that if they have issues that set them apart, they will be labeled. Better an accurate label that can get him the services he needs than an inaccurate one that might prevent him from doing what he wants. [As an aside, I teach at the university level. A number of my students have 'diagnoses'. I don't know what they are, and I don't care. What's important is that they get accommodations that help them succeed. I had one particular, very bright student, who shared her ADHD diagnosis with me. The accommodations she got for exams made a HUGE difference for her ability to perform.]