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Will ASD testing break my son?

post #1 of 33
Thread Starter 
I've been worried about ASD in my son for a while. Just back of the burner worry because of some seriously advanced behavior on his part, coupled with a lack of social skills, coupled with mercury fillings both placed and removed from my skull. For the most part, my heart says he is not autistic at all. I've been watching him closely and there have been some signs, but I've also seen a lot that indicates otherwise. It's been hard to judge, because he's also just so bright.

But, crap.

My dad came over a few hours ago and brought a magazine about autism, along with some print outs that he'd researched from the internet. He's convinced that there's something wrong with Nico, most likely autism.

I listened to what he said, and he made some good points. Hell, I've been worried about it. But these last few weeks I've seen so many changes, socially, that I was really reassured and almost not worried about it anymore. I mean, anyone who hangs out with Nico for a length of time can see that he's playful and affectionate and engages with people. And he continues to change and develop. So much of what he does is also on the Toddler Spectrum.

But where is the line between rationalization and reality? What does it hurt to have the testing done? He is who he is, I love him. If he's autistic, what does that even really change? Knowing would only strengthen my ability to guide him as a parent.

But FUNK! At the same time I'm so scared to find out. So scared the methods of testing are flawed. I mean, some of the symptoms on the list that match up... heck, I have to wonder how he'd act if we were punishing him for things, rewarding him for things. Perhaps he'd be more social because he was constantly seeking approval; perhaps he'd "behave" more in public out of fear that we'd beat him. Are these tests really set up to recognize children of "long term approach" parenting?

Ugh.

Ugh ugh ugh.

So, I guess I'll get him tested. This does push the decision in that direction, even though I'd just decided that it wasn't necessary. I don't want to miss a window of opportunity.

Someone please tell me that doctors don't medicate for autism? Tell me the testing won't screw him up?

Or tell me that it will, and what the risks are? I'm really scared, and don't trust "the system".
post #2 of 33
getting a dx is your choice. the testing will not "screw him up" and medications are not needed for autism (most of the time) just therapy, and there isnt anything wrong with that because it helps the children reach their fullest potential.

also, there isnt anything wrong with having autism, or having a kid with autism. Autism is a spectrum and you have high functioning autistics, and classic autism, and then PDD-NOS, which is a developmental disorder that is not otherwise specified. It isnt a diagnosis that should bring your world crashing down, but one that gets the ball rolling to helping your son be all that he can be.

there has been no proof that mercury causes autism

if you are worried, bring it up to your ped. and he will point you in the direction you need to go.
post #3 of 33
I had the same feelings as you when DS's pediatrician wanted to get him evaluated. I knew he'd still be my wonderful, sweet, bright boy whether diagnosed or not. We decided to go through with it, mostly because we are on State insurance and need all the help we can get for approval for additional speech therapy, but also because of the window of opportunity you mentioned. It was a 4-5 hour evaluation and as long as your little one is well rested, he will be OK. It's alot of play and just a little work. More exhausting for the parent, I think (so many questions!).
post #4 of 33
For me it was driving me nuts thinking what if he's on the spectrum? No, he can't be look at this, that, this. As he got older I was feeling like I was analyzing everything. I just had to know. So we went for evaluation and I made a big long list of why I didn't think he could be on the spectrum (social, super affectionate, eye contact, smiles a lot etc. etc. etc.) She said "what on this list do you think rules out autism?" None it turns out.

I was just plain old terrified of autism. But once we got the diagnosis and I settled into it it was easier to handle. The what if was a lot more scary and upsetting than the what is.

There isn't a window of opportunity per se but I do think for us it helped because I could select things to help him manage easier.

Medicate? No, there is no prescription for autism. Most kids here aren't medicated. If a child has certain issues (like aggression or explosiveness) sometimes medication could be used temporarily. But no one would force that even in that case and it's far from even a majority of kids. Anyway, that would be true if the underlying diagnosis was anything. It's not specific to autism. Same thing with depression or seizures or anxiety, you know? I'd say you're a lot, lot, lot more likely to get medication automatically suggested if a child gets an ADHD diagnosis. No med is automatically suggested for autism.

Testing won't screw him up. I don't know his age...but generally it seemed like play to my son in my experience. As far as your concerns about your parenting approach..no concern. Autism's affect on interactions that they are looking at would be something you would see regardless of parenting.

For me it is always better to know than to fear the unknown. And I was able to select things that helped my son when we finally knew what was going on for sure.
post #5 of 33
Thread Starter 
Oh man, I just realized that what my dad said might make it sound like I was passing judgment on people with autism. I should have used quotes around the "something wrong, most likely autism" part to indicate that that's what he'd said. I think he mostly meant that there was "something different", but he did say something "wrong." I hope that didn't hurt anyone's feelings

Thanks for the feedback, this is really, really helpful. I am just soooo distrustful of the "the system" and hesitate to introduce my son to it. Knowing there isn't a Medicate-now protocol is especially reassuring. I think I'll wait a day to see if anyone comes along with a different story, and if not I'll give the testing center a call (he ped had given me a referral when I expressed concern the last time I saw her.)
post #6 of 33
There are doctors who experiment with medicating for autism and related disorders; but it is by no means the norm.

We felt the same as you--questioning the tests and whatnot. People questioned whether the therapies helped.

In the end, we still loved our son. The therapies certainly didn't hurt him any (although he really did NOT enjoy some of them, this wasn't the majority). And today, he's doing really well. Who knows if he's in the spectrum or not (I honestly DO question it now, although in retro I totally see where he looked like he was).

Just go ahead with the stuff until you feel like it's actually doing some harm... kwim? This stuff won't change how you feel about your child; and even if they're wrong and they have you doing therapy with him--ask yourself if that could do anything but good for him... kwim?
post #7 of 33
Quote:
Originally Posted by sbgrace View Post
For me it was driving me nuts thinking what if he's on the spectrum? No, he can't be look at this, that, this. As he got older I was feeling like I was analyzing everything. I just had to know. So we went for evaluation and I made a big long list of why I didn't think he could be on the spectrum (social, super affectionate, eye contact, smiles a lot etc. etc. etc.) She said "what on this list do you think rules out autism?" None it turns out.

I was just plain old terrified of autism. But once we got the diagnosis and I settled into it it was easier to handle. The what if was a lot more scary and upsetting than the what is....

For me it is always better to know than to fear the unknown. And I was able to select things that helped my son when we finally knew what was going on for sure.
:

That's exactly where we are, after a year of that roller coaster. It's not as scary as I thought it would be. And knowing how to help him will make a world of difference!
post #8 of 33
When my sonw as diagnosed there was no formal "testing". The doctor did ask him to do things like hop on one foot and run down the hall and draw some designs on paper, but the vast majority of the interaction with the doctor was with his dad and I. Autism is a diagnosis that is made pretty much on anecdotal evidence. You will be asked a lot of questions about your sons behaviors. If you are concerned about your son listening to you describe his quirks then have your dad or your DH sit out in the waiting room with him while you speak to the doctor. But there really isn't anything about the eval that think would traumatize your son. The doc may want a hearing test which most kids, autistic or not, don't care much for because it's boring, otherwise the doctor will simply watch your son speak and play.
As far as whether you should get a diagnosis or not, that's up to you, but if you even remotely suspect that your child may need help somewhere on down the line at school, then you need to get that piece of paper with that label on it. If you don't you and your child could find yourselves in a very unhappy situation at school and with very few options to change it. I love both of my autistic boys exactly the way they are, but the fact remains that they need special accomodations at school in order to succeed. If I refuse to have them "labeled" then they will be inadvertently "punished" for that. Just my two cents. Good luck with your decision. I know you are in a hard place right now.
post #9 of 33
There are doctors who experiment with medicating for autism and related disorders; but it is by no means the norm.

We felt the same as you--questioning the tests and whatnot. People questioned whether the therapies helped.

In the end, we still loved our son. The therapies certainly didn't hurt him any (although he really did NOT enjoy some of them, this wasn't the majority). And today, he's doing really well. Who knows if he's in the spectrum or not (I honestly DO question it now, although in retro I totally see where he looked like he was).

Just go ahead with the stuff until you feel like it's actually doing some harm... kwim? This stuff won't change how you feel about your child; and even if they're wrong and they have you doing therapy with him--ask yourself if that could do anything but good for him... kwim?
post #10 of 33
I actually found the testing really useful. Both in terms of having very specific ideas of where my son's delays are, and what to do about those specific delays, but because it gave me words I could use with other people to explain behavior they saw. In the end, we had testing done a few different times by different people, and all of those rounds of testing gave us different information and validation that what we were seeing and were concerned about was real.

Remember, too, that the testing doesnt force you into anything -- it just give you information. So then you can take that and do specific research into what, if anything, you want to do about it. It give you a way to target your concerns into specifics, which if you are just generally worried you can't do.

And hey, they may say "everything is typical" and you can relax!

I think more information is always good.
post #11 of 33
I haven't gone through your responces but want to respond before I'm out the door for the weekend.

Autism testing would in no way "screw up" your Ds. How would it? No idea how it could. They observe him and ask you a bunch of questions. Its not like a medical proceedure. Generally the kids have no idea they are being tested, only being played with.

A diagnosis of Autism doesn't change your DS. The only difference is you have a label that you can use to get services if you want them.

There is NO medication for Autism. Period. End of story. what Drs do Medicate are underlying issues, like Anxiety or ADHD if the child has those and if the parent wants medication. Nothing is forced. Most professionals wont even bring up medicating for those unless its a HUGE distrubance in the child's life and medicating is the last option.

Mercury doesn't cause Autism. Mercury poisining can cause "autistic-like symptoms" but is not Autism or linked to Autism in any way.

Autism is a spectrum, not all kids will have all symptoms. Its what symptoms, how many and the different combinations that determine if a child has Autism and the type of Autism they have.

My Ds has Classic Autism, he is social and loving and attached to people. The idea that Autistics can't love or attach or are non-verbal is a myth.

If you go for an evaluation and they do come back with an Autism diagnosis, remember, he's the same child. Nothing changes that.

Overall, the testing and diagnosis helped us get the services our DS needed and to better understand him.
post #12 of 33
the testing for ASD's is very non invasive, and it would be extremely rare for it tocause your son any long term effects. He may be off schedule for a few days and not like going into the drs office etc, but the workup doent involve needles unless theres testing for other possible causes that needs to be done, doesnt involve meds at all unless thats a treatment plan that becomes necessary as your son ages. If there possible nurological problems that need investigating, they will try the least invasive methods first.

I would not be scared of seeking out a DX for your child.
post #13 of 33
Add me to the pile of "go ahead." We experienced no negatives from getting a dx, and the evaluation itself is observation and playing.
post #14 of 33
I pretty much agree with everyone else. I will say though in our circumstance it hasn't helped with services and I didn't learn anything new from it. But I know our state is different than a lot. Until 6 we can receive the same services whether he had a dx or not. Plus he had been getting services since he was 1 1/2 so we had all sorts of evals done that I learned from.

Do you think you want or need services? Will you be able to understand your ds better if you knew he had a certain dx? Those are the type of things you may want to think about.
post #15 of 33
Quote:
coupled with mercury fillings both placed and removed from my skull.
This phrase really struck me. If what you're concerned about is mercury poisoning, then I think testing is well worth the effort because that's very treatable. My son (23 mos) has enough symptoms of mercury poisoning from my fillings that I've found it worthwhile to treat him now. For us, it started because my health is much worse, and in figuring out what is messing with my life, we started asking questions about him.
post #16 of 33
Thread Starter 
Well, to be honest I don't think he's on the spectrum. We aren't dealing with any issues that I feel I really need help with, I'm pretty comfortable with his development. The only reason that I've been worried is that he's just so advanced in certain areas; started reading before he was two, had a vocabulary of at least a 1000 words at two, was using 5-6 word sentences, etc. And he's really INTO letters and words, and it seems like that kind of intense interest has been on some of the watch lists that I've seen. Anything unusual sort of sets my hackles up, and none of the kids that we hang out with has shown similar development, so that feeling of difference has been somewhat unsettling to me.

My dad is concerned mostly because of social issues. But I think his expectations are off for a 2 year old boy. He thinks that Nico doesn't really respond to him, but he'll try asking him "how are you?" "what's your favorite color?" things of that nature that mean absolutely nothing to Nico. Add to that, he'll do it while Nico is engaged in something already and really doesn't care about some adult flapping his lips. Dad thinks that he should at least look at him when he talks, that it's not socially appropriate for him to not respond at all. But I don't know, that doesn't seem all that odd to me because he does respond if some consideration is given to the appropriateness of the timing and the question itself. Dad was finally convinced when he babysat Nico for the first time. He watched him for three hours, and says that Nico didn't respond to him at all. I happen to know, though, that he put a video on the tv as soon as I left. Nico is really affected by the tv in a way that diminishes his ability to engage with people or even be creative or spontaneous. Finally, Nico is a wild and crazy kid. Loud, boisterous, curious; I think he thinks that Nico should sit at a table and answer questions and be enthralled with adults and what they're saying. Well, Nico is far more interested in dancing in his seat, testing out the acoustics of the room, running around the tables. He's not interested in the kind of conversations that my dad wants to have. If Dad tried participating with Nico on Nico's terms, he'd get a different response (as the other grandparents have experienced) but his expectations just aren't appropriate in my opinion. Not for every two year old. And add to that, my dad doesn't see Nico very often; the least of all the grandparents.

Anyway, I guess my main fear is a misdiagnoses. I worry about the medical profession in general trying to put square children into round slots, and applying names and labels to them just because they're different. I don't really know what kind of long term impact any kind of label would have on my son, there's just no way to know. Gifted, autistic, adhd, even "normal", can possibly shift the way that Nico and the world around him perceives him. That doesn't really apply to a correct diagnosis. If he has autism or is on the spectrum, then of course knowing about it means that we can help him adapt and respond and get the most out of this world. But if it's a misdiagnosis, what kind of course would that set us on? I don't know, and it scares me. There's a woman in my tribe who's talked about some people she's known who have dealt with the possibility and the diagnosis of ASD. One of them regretted getting the test because it was later shown to be a misdiagnosis, one of them never got the test and the child grew out of the behavior, one was diagnosed and they were able to help their son. It seems like this forum might be a little biased in favor of people feel the diagnosis was correct; I don't know where I'd go to hear about the impacts of misdiagnosis.

So, it's just not clear to me what the risks are, and if it's worth it. I've been watching Nico develop consistently over the years in all areas, he's been growing and changing and his development has been reassuring to me. But, it would settle the lingering worry over his letter and word obsession, and it would answer the worries and doubts that my dad is having to have him tested. Knowing that they don't medicate for autism is reassuring, and that the tests themselves aren't stressful or hard on the child is reassuring. But the fear of a misdiagnosis is still unsettling to me. And I don't know what the exact risk of that is, what the exact impact would be, well enough to know if it's worth taking. If I was struggling in some way, if it was clear that Nico wasn't developing or was frustrated or upset or struggling himself, then that would definitely make this decision easier for me.

Like I said, I'm leaning towards just getting him tested. The more information the better, and knowing one way or the other doesn't change who my son is, or the love that I have for him. But, but, but. I'm still scared.

Thanks for all of the really insightful comments are reassurances. They have all been very helpful.

And, dang. I just rambled a good long while, didn't I
post #17 of 33
from what you say, your son does seem like he would be helped by at least an EI evaluation, then you can say if you want to continue or not. EI doesnt give labels, just evaluations of delays and services for PT,OT and ST.
post #18 of 33
In my experience depending on where you are you will have trouble having him evaluated at two anyway. That depends on where you are. I do think that autism can be accurately diagnosed by someone who knows what they are looking for. Typical kids (even genius ones) not on the spectrum do respond differently. At two I was told my son wasn't on the spectrum but I was very confused by the report and what the person said. We had another evaluation at 2.5...on the spectrum and she made a sense. Another at closer to three with same result and a couple since then more for the purpose of helping him.

Typical kids respond when they hear their names. We all do; think about when you're in a store and someone says your name--you just immediately turn to look even if it wasn't directed at you. We're programmed to respond. My spectrum kid hears his name sure but then instead of responding/looking to you he waits to hear what you're going to say then decides whether he wants to respond or engage. It's different. A genius kiddo not on the spectrum at two is going to get and use non-verbal communication and facial expressions and body language for example. That's not even a main issue; just in my mind because of what we're working on with Andrew. But if you're worried about mis-diagnosis you can always have him assessed and then not formally diagnosed. I did that for a while.

I think at two it is hard to tell unless you really know what you're looking for. So maybe wait a while or go somewhere like Kennedy Krieger or I believe there are places in North Carolina and probably other places where they can accurately diagnose young. I don't think you'd have a question whether it was accurate if you got a really good assessment. They make it clear how and why they see (or don't) see autism.
post #19 of 33
Thread Starter 
Quote:
Originally Posted by sbgrace View Post
In my experience depending on where you are you will have trouble having him evaluated at two anyway. That depends on where you are. I do think that autism can be accurately diagnosed by someone who knows what they are looking for. Typical kids (even genius ones) not on the spectrum do respond differently. At two I was told my son wasn't on the spectrum but I was very confused by the report and what the person said. We had another evaluation at 2.5...on the spectrum and she made a sense. Another at closer to three with same result and a couple since then more for the purpose of helping him.

A genius kiddo not on the spectrum at two is going to get and use non-verbal communication and facial expressions and body language for example. That's not even a main issue; just in my mind because of what we're working on with Andrew. But if you're worried about mis-diagnosis you can always have him assessed and then not formally diagnosed. I did that for a while.

I think at two it is hard to tell unless you really know what you're looking for. So maybe wait a while or go somewhere like Kennedy Krieger or I believe there are places in North Carolina and probably other places where they can accurately diagnose young. I don't think you'd have a question whether it was accurate if you got a really good assessment. They make it clear how and why they see (or don't) see autism.
Do you just ask them "please do an assessment, but I don't need a formal diagnosis?"
post #20 of 33
EI do not give formal dx's. They are just to catch delays and refer if you want to for further testing.
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