To Seek Dx or Wait&See?

iVillage Member
Registered: 07-12-2004
To Seek Dx or Wait&See?
10
Fri, 07-09-2010 - 12:04am

Hi there,

I visited this board once, over a year ago when I was just beginning to realize that my ds is 'different.' Now ds is 5yrs old, starting kindergarten in the fall and I have some choices to make. After my stepmother, who is the biggest "you just don't parent right" person in the world! asked if I have ever thought that ds might have Asperger's I figured it was time to talk to the doc about what has been obvious to me for years now. After doing so, the ped feels that ds shows signs of ADHD, a slight sensory disorder and touches of Asperger's. He gave me the name of a dr to contact re testing.

My question and quandary is in trying to decide whether or not to pursue a dx now, or wait and see if his kindergarten experience turns into "please put your child on medication." I have a 15 yr cousin with ADHD and medication has helped him to a degree, but I am reticent to start it before trying other things. The dr warned me that if ds was given a dx of ADHD, the question of whether or not to medicate will come up faster than if he gets a dx of PDD-NOS or Asperger's. My son is so very hypersocial I think the dr testing him may overlook other traits that are not part of ADHD in the formal sense. I'm not anti-medication, but I do want him to have the diagnosis to best help him to love school and the world he inhabits, not one that will address only part of his challenges.

I suppose I'm afraid a dx now may hurt him more than help, though I want him to have the proper tools going forward and I think those will only come with the benefit of a dx, or else he'll just end up being the problem kid in time-out all day.

Ugh. If anyone made it this far, wdyt? Test or wait?

Thanks,
Jody with Griffin, the sweetest maniac in the world!

iVillage Member
Registered: 05-11-2005
Fri, 07-09-2010 - 1:13am

That's a tough call. I had a difficult dilemma with my youngest


June08siggy

iVillage Member
Registered: 03-27-2003
Fri, 07-09-2010 - 8:37am

If it were me, I would start now.

                                

iVillage Member
Registered: 01-07-2008
Fri, 07-09-2010 - 11:46am

I would strongly advocate pursuing a dx. At the moment, you do not know what the dx will be, definatively. But your gut instinct, and the dr, tells you that something is 'wrong' and it isn't going away. Without the right dx my experience tells me you will wind up with a kid who struggles in school, who gets labelled as 'bad' just as you have been labelled as being a poor parent, and who then has a really tough time getting it together. With a dx you get access to help and support, and also a better understanding of your child and how to be a better parent to them.


it's important to get the right diagnosis though, and you need to be prepared that it may take a while to get the diagnosis right - particularly if it is Asperger's this can be really difficult to disentangle from other possibilities until they are older, we started the referral process at 5 and didn't get a defininative diagnosis until he was 8. Also bear in mind that even if ADHD *is* part of the mix (and it may, or may not be, a lot of ASD-type behaviour can present as ADHD-type behaviours, and vice versa, which is why you need a very good and experienced professional to disentangle it all properly) you may or may not want to medicate, and certainly no one can force you to. I know a lot of parents of special needs kids where ADHD is part of the mix who do not medicate and I also know some who do, and it really is a matter of working out what is best for *your child* and *your family* which will not be the same as what is best for child B, who may have exactly the same diagnosis. For some, meds are a lifesaver, for others, they are part of the problem. It isn't a cut and dried as ADHD=meds and not ADHD =/= meds. there a lot of parents here who use medication and can share their experiences, and there a lot (like me) who don't and can share those experiences too.


Anyway, my personal experiences would indicate that pursuing a diagnosis is the right thing to do - we've never looked back and have been extremely grateful from the moment the lightbulb came on. But it is a difficult process in itself, and may be more time consuming, expensive, and emotionally draining that you realise, so be prepared for that.


and welcome to the board


Kirsty, mum to Euan (11, Aspergers Syndrome) Rohan (7, NT) and Maeve (4, NT)

"My definition of housework is to sweep the room with a glance"


"My definition of housework is to sweep the room with a glance"


Follow my blog on http://mumsnet.com/blogs/kirsteinr/


 

iVillage Member
Registered: 10-08-2009
Fri, 07-09-2010 - 11:54am

iVillage Member
Registered: 07-12-2004
Fri, 07-09-2010 - 1:28pm

Thank you all for your help. Everything everyone said was so reassuring and makes me feel more confident about moving forward. I agree that being 'labeled' with xyzDX is so much better an option than being labeled as the 'bad kid.' I have hesitated not because I fear a dx, at this point I would welcome one, but have suffered from the bad parent self-image, that he's a boy and I just don't handle him right. And his father -we separated 2 yrs ago- is of the camp that nothing is wrong with his boy, so he is definitely not supportive in this regard.

On a positive note, we had a playdate today with two of his preschool classmates and I was able to discuss this with the other mothers. DS attended a co-op preschool, so these mothers worked in the classroom a lot with ds and both agree that knowledge and tools can only help ds as he starts public school.

Thanks again for your time and support. I'm gonna go shed a few tears now in relief that finally, I will be taking steps to make all of our lives better. I know this will be a process, the magic fairy hasn't made a wand yet to deal with this situation, but at least there is something I can do.

Jody with Griffin, all-the-light-in-the world boy

iVillage Member
Registered: 10-03-2003
Fri, 07-09-2010 - 1:44pm

Hello there,


I will wait and have the school test him.

iVillage Member
Registered: 07-12-2004
Fri, 07-09-2010 - 11:59pm

Thanks graceateaa, for your insight. I would never have thought of talking to the school prior to starting an assessment. We have an appt on Tuesday at ds's school for a totally unrelated matter, but I'll definitely ask about how we should proceed to make this as streamlined as possible as it has to do with a school evaluation vs a professional one. I'd like to keep as much of my hair as I can through this process and having the school throw a wrench into it like they did to your family would certainly be to the detriment of my hairdo at the very least.

My stepmom mentioned Asperger's because, after years of getting angry at ds's 'bad' behavior, she finally noticed the quirks during our recent visit(they live in PA, we live in VA). Maybe they're getting more apparent -I think so- or maybe she just really likes that new NBC drama "Parenthood" a whole lot:)

Seriously though, maybe that show(she told me she watches it) or just her increasing age has helped her to notice that what used to seem like him acting up - for example ds was washing his hands, she had to get into the bathroom and she physically removed him, and he totally melted down - is not him behaving badly, but him reacting to having his process interrupted. Because she actually saw that this time, and didn't get mad at him or me. That kind of interaction combined with watching him for two days in a row in social situations(she gave two parties in two days, both w/ at least 40ppl attending)had her asking me if I had ever heard of Asperger's. Whatever has brought about her change of opinion, I'm all for it. So much more pleasant to visit when one doesn't have to worry about one's child being criticized for being himself!

I don't think he has a textbook case of AS, he does fine in some situations, isn't at all removed, is in fact the opposite and tends to have what I call hyper-social behavior. He does have some ADHD traits, but many of his quirks fall on the spectrum, as far as my non-clinical, intuition-based opinion goes:)

-Difficulty catching verbal and non-verbal cues(this has lead to multiple problems with classmates)
-Difficulty with transitions
-Easily over-stimulated in social situations
-Keeping eye contact can be a problem
-Has difficulty being interrupted before he's done with an activity
-Wants to interact with everyone but tends to alienate with behavior
-Late talker, but now highly verbal for age
-High intelligence level
-Hums constantly
-Sensitive to sound(couldn't even pee at gas station because music was too loud for him, he had to hold his ears while little sister was dancing to it happily)
-Awkward gross motor skills
-Awkward writing style and scissor use but could put wooden needle through small hole at 12 months old
-'Obsessed' with Star Wars, Legos, shooting things:P
-Drives mom insane with inability to manage time!

There's more but I think I've gotten enough off my chest for tonight! Thanks again for your support, and everyone else here too.

Jody with Griffin, the fast-talkin' sweetie boy

iVillage Member
Registered: 11-28-2006
Sat, 07-10-2010 - 2:05am

Jody, you just described my AS 10 yr old here, but with a few things difference's like tourettes, he spoke on time but needed speech for articulation and he has better than most eye contact.....

You said....
"I don't think he has a textbook case of AS, he does fine in some situations, isn't at all removed, is in fact the opposite and tends to have what I call hyper-social behavior. He does have some ADHD traits, but many of his quirks fall on the spectrum, as far as my non-clinical, intuition-based opinion goes:)
-Difficulty catching verbal and non-verbal cues(this has lead to multiple problems with classmates)
-Difficulty with transitions
-Easily over-stimulated in social situations
-Keeping eye contact can be a problem
-Has difficulty being interrupted before he's done with an activity
-Wants to interact with everyone but tends to alienate with behavior
-Late talker, but now highly verbal for age
-High intelligence level
-Hums constantly
-Sensitive to sound(couldn't even pee at gas station because music was too loud for him, he had to hold his ears while little sister was dancing to it happily)
-Awkward gross motor skills
-Awkward writing style and scissor use but could put wooden needle through small hole at 12 months old
-'Obsessed' with Star Wars, Legos, shooting things:P
-Drives mom insane with inability to manage time!
There's more but I think I've gotten enough off my chest for tonight! Thanks again for your support, and everyone else here too."

My 14 yr old AS is completly different btw. You will find that you have met one person with Autism, then you have met one person. They are all different.

And btw the school is right, there are certain tests that cannot be repeated within a years time etc.

BUT there are multiple tests that do the same thing that they can run. For example their are multiple tests for IQ. Their are multiple tests for Achievment, their are multiple tests for Vision, or Audiology, or Speech.

Grace, that wasn't a good excuse from the district at all. They could of done their testing, they just decided to tell you something so they could pass the time and save money. Not good for your child who needed services right away.

iVillage Member
Registered: 06-03-2006
Sun, 07-11-2010 - 9:46am

my ex believes nothing is wrong with his son. later i learned he denied any problems because he thought his child support would increase for having a special needs child.

iVillage Member
Registered: 07-12-2004
Sun, 07-11-2010 - 10:58pm

Thank you for the kind words, decson. Finding support here has been so helpful, I wish I had come earlier. Much earlier! I no longer feel so alone and so darn crazy. You guys are great.

Jody with Griffin, finally asleep and at peace!