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AddlepatedMonkeyMama
02-01-2012, 07:23 PM
The time has come. We're really going to do it (after hemming and hawing for over a year).

Now it's coming down to a matter of where to go. The choices are a one-hour consultation with doctor specializing in neurology at an Autism Center... or a full-blown evaluation with the Developmental Medicine team at a teaching hospital. I'm leaning toward the former at the moment, because we will be able to get an appointment within the next couple of months, whereas the full eval has a much longer waiting list.

Anyone who has been down this path (Batgirl? Cara? Corrigan? Others!?) have any words of advice? I'm not sure if we need to go the full evaluation route, since most of our concerns are about things that can't be measured or tested. On the other hand, is a one-hour appointment enough to get a reliable diagnosis (if there is a diagnosis to be made)?

There's no reason why we can't do both, but I'm eager to get the ball rolling at this point.

Thanks!

Accidental Homeschooler
02-01-2012, 07:51 PM
We have the full-blown evaluation scheduled for July at the autism center at a university/teaching hospital. I did not know of another option around here for getting a diagnosis other than a full evaluation. Will the one hour consultation provide only a diagnosis? I am hoping the testing we have will give me more specific information about dd's areas of strengths and weaknesses so I know where/how we should focus our efforts. But maybe I am putting too much faith in this evaluation. I will also be interested in what others who have already been through this have to say.

Batgirl
02-01-2012, 08:22 PM
My advice is: Do both. The doc can do maybe a thumbs up or thumbs down after a one hour consult but you'll want the full eval (imo, only) to get a full picture of your son's strengths and weaknesses, like Accidental said above. (I would think the neurologist would recommend it as well.) A one hour appointment is enough to get a provisional diagnosis/strong opinion. You can always drop off the waitlist if you change your mind! In the meantime, whether the answer is yes, he is, or no, he isn't, (from the neurologist) you'll probably get a nice list of resources you can immediately mine for ideas and/or therapy if you think he might benefit from it.

A lot of the evaluation will be you filling out questionaires--that's what they'll use to figure out the social/emotional stuff, to a large extent--that's how they try to "measure the immeaurables".

skrink
02-01-2012, 08:23 PM
We faffed around for a while, and ended up with getting a full eval at a children's hospital autism center. It was a loooong process (from first call to end eval, about 18 mos.), and since my dd can be a tad (ha!) oppositional and uncooperative, I'm not sure that all of the testing was completely accurate. Still, it was interesting to read reports generated from different team members/specialties. It led us to our current path of meds (SSRI - has had truly *astounding* results, the extent of which has me reeling) and quality therapy. That part took longer but is very much worth it. Both dd and I are learning so much from this woman. Would we have gotten here w/o the eval? Dunno. Despite some iffy results on testing and in other areas where cooperation was key, we did get a much fuller picture of our situation. And more of a feeling of "oh, crap, we HAVE to do something here", instead of the is she/isn't she debate that has raged in our household from the beginning of time.

The one hour appointment may give you some good data, but I do think there is value in pursuing a cross specialty evaluation. For instance we are looking at speech therapy (for pragmatic speech), which is something that would not have occurred to us prior, and there were a few other things that came up that have been of interest. I would check with your insurance to make sure both paths are covered. We have been battling Aetna for pretty much forever, and if they see something that looks like duplicate services they withhold payment. Just something to think about.

MrsLOLcat
02-01-2012, 08:48 PM
I agree with everyone else. The one-hour consult might point you in the right direction, but the full evaluation is what you'll need to feel really confident about a diagnosis. Even then, there might still be a few lingering questions that get answered over time.

skrink
02-01-2012, 09:38 PM
Even then, there might still be a few lingering questions that get answered over time.

Yes, it's important to realize that the (long) final document you receive at the end of eval will raise as many questions as it answers. But the big picture question will be put to rest. That was important to us. It's frustrating that none of it is an exact science. There's a ton of trial and error. Hopefully you'll land on what helps sooner rather than later. I wish you luck, and patience.

AddlepatedMonkeyMama
02-02-2012, 08:34 AM
Thank you guys, so much! I'm going to call around to a couple more hospitals that do evaluations. I'm glad we live near a city with about a half a dozen teaching hospitals. :)

dbmamaz
02-02-2012, 08:48 AM
Wow, that's cool to hear. I didn't know what was up w Orion and we went through 4 different evaluations and I al out went for another, plus one from the school, but we don't have an autism center. I tried county mental health, a psychologist at children's hospital and a developmental pediatrician at children's hospital,and finally a private practice psychologist who used to work w her ex at one of the hospitals but is known here as one of the best diagnosticians. I almost e
Went to the children's mood disorder clinic, but decided we'd had enough. But the difference between a 1-hour office visit and a thorough evaluation was pretty huge. And then of course, we never found anyone who could HELP us, other than a psychiatrist.

Good luck

kailuamom67
02-02-2012, 10:48 AM
We started with trying to keep it simple, which complicated things more! The shorter consults ended up providing a bad DX, which set us backwards. Of course, we didn't realize it was wrong until travelling down that path for quite a while with disastrous results.

We are now mid-way through the process at Stanford, and I think it is a much much better process! So far, we have spent two hours with the two psychiatrist team, and come away with, yeah - likely on the spectrum, go get this book/activity thingy. Had someone recommended this stupid exercise three years ago when we started, I bet we would have skipped LOTS of heartache.

We have to go back for a full day of testing, but so far I would say that I would skip the shortcuts. They ended up taki g us much longer in the end.

AddlepatedMonkeyMama
02-02-2012, 10:55 AM
Thank you, Cara and Colleen. I knew I would get some good advice here.

laundrycrisis
02-02-2012, 11:10 AM
I need to do this too, for DS2. The older he gets, the more obvious his social delays and behavioral issues are becoming. I have been extremely disappointed to find out that we have ZERO insurance coverage for this, meaning any of the evaluation process and any of the therapies. Although IL has a state law requiring coverage, private companies that self-insure are exempt, because they are covered under the federal ERISA legislation. DH's employer fits this category, and our benefits are written to specifically exclude all evaluations and therapies related to autism or any learning disabilities that are not the result of a physical injury or physical birth defect. So we are looking into an evaluation, but I understand the cost can be $2-4K, and we will have to pay for the whole thing out of pocket.

Penguin
02-02-2012, 12:20 PM
We just -- finally -- got a referral from our pediatrician to the Autism Center in Nov. Despite hearing that the waiting lists were 6 months long, we had our first appt the week before Christmas, thanks to cancellations -- a one hour intake evaluation with an ARNP. She gave us a "yes, I think you're on the right track and I recommend a full evaluation" which we now have scheduled, beginning Feb 14th (can't believe it's all happening so quickly given what I'd heard about waitlists!) It's four 2 hour appts, the last of which is just for DH and I to discuss results.

I'd do both. I definitely think you'll want the full evaluation, I don't think they can get a really full picture in one hour, but they can certainly decide there's reason to go further. Get on the waitlist for sure! You never know if you'll get a cancellation and get in sooner.

hockeymom
02-02-2012, 12:52 PM
I just wanted to say Good Luck, AMM! I hope the process doesn't take (too) long and I hope you get the answers and help that you are looking for.

((hugs))

manec93
02-02-2012, 12:59 PM
I'm very new to this group (been lurking off and on for a while), but I just want to echo what the others have said. We went both routes with our two on the spectrum. With our now 14 year old son, we tried the simple eval first, and just ended up with more questions. With our now 11 year old daughter, we had a full-blown ASD eval. through our local Easter Seals. It was worth the time, energy, and associated costs.

The one thing I will caution you about though, even if you are convinced going into something like this that your child falls somewhere on the spectrum, receiving the results of a full-blown evaluation, and seeing those deficits on paper, can be an emotional gut punch. Even today, after being a "spectrum mom" for over 10 years, I still get emotional whenever we receive testing results, etc.

Good luck~ it's not easy, but like the others have said, knowledge is power when it comes to neurological disorders.

AddlepatedMonkeyMama
02-02-2012, 04:46 PM
Thanks, everyone. You guys are the best!

That stinks about your insurance, laundrycrisis. I hope you can find a way to get the evaluation.

skrink
02-02-2012, 04:50 PM
I need to do this too, for DS2. The older he gets, the more obvious his social delays and behavioral issues are becoming. I have been extremely disappointed to find out that we have ZERO insurance coverage for this, meaning any of the evaluation process and any of the therapies. Although IL has a state law requiring coverage, private companies that self-insure are exempt, because they are covered under the federal ERISA legislation. DH's employer fits this category, and our benefits are written to specifically exclude all evaluations and therapies related to autism or any learning disabilities that are not the result of a physical injury or physical birth defect. So we are looking into an evaluation, but I understand the cost can be $2-4K, and we will have to pay for the whole thing out of pocket.

The evaluation itself was covered for us, but all treatment has been out of pocket, and for this very reason. No coverage for treatment of developmental disabilities. I can work myself up into a righteous froth when I think about dealing with insurance cos. We loaded up our FSA this year so at least there'll be a tax benefit. Sigh.

Lou
02-02-2012, 10:20 PM
We did a one hour doc visit and all that was told to us, was that it appeared he was flying 'asperger red flags' but a full eval would be needed for a Dx. So we did the full eval last month, still don't know the results. Yet, every day I beat myself up because this or that situation comes up and I think about the eval and how they never touched base on these issues. Never asked, and yet they are asperger issues according to the books I've read.

And someone suggested reading Aspergirl, which I'm in the middle of now and it just nearly puts me in tears wondering if I should of been given a Dx as a child? My life was amazing, so no wonder I flew under the radar, I was always told I could do no wrong, I was the baby, I was a princess, I was special and amazing, blah blah blah, so I had NO FREEK'N IDEA I was 'different' in any shape or form. If someone was different from MY normal it was THEIR problem. I had confidence and self esteem out the WAHZOOOOO but NOW that I'm a mother, I see the same things in my kids and think, wow, that's different, How do you build a great self esteem when your child is doing so many 'odd' things? I sometimes HATE that I'm not one of those parents that are completely dilusional about their child being perfect. I soooo sometimes wish I was living in that bubble. (like a friend of mine who has an sad to say VERY NOT attractive daughter, but she is convinced her beauty should be a model) WHY can't I be blinded with parental love like that??? WHY do I see the quirks???

ANYHOW, back to the eval. I'd go with the full eval if you can. :)

dbmamaz
02-02-2012, 10:41 PM
I sometimes HATE that I'm not one of those parents that are completely dilusional about their child being perfect. I soooo sometimes wish I was living in that bubble. (like a friend of mine who has an sad to say VERY NOT attractive daughter, but she is convinced her beauty should be a model) WHY can't I be blinded with parental love like that???
Um, Lou, didnt I once tell you we arent much alike? way to make me eat my words!

When I moved here to the great white soulless suburbs, and put my kids in the schools which my neighbor once described as a hotbed of conformity and mediocrity, I was greeted by them . . .not fitting in. My daughter, in the gifted program in our last school, got Cs her first report card. My beautiful, brilliant boy, I was told, had some problems bigger than 'just a boy who cant sit still." I panicked and tried harder and harder to teach my kids how to fit in at this 'good' school district.

But you know, they never fit in at our OLD school district. Our old grade school, my kids were clearly among the best and brightest - they worked hard, got good grades, and Heron, at least, was well behaved.

It took me years to realize that, hey, _I_ was never normal and _I_ never fit in, and I was pretty proud of it. Why would I expect different from my kids? I have to admit, homeschooling makes this SO much easier. We hang out w families homeschooling asperger and adhd kids who like video games, and we feel like we are just fine!

but I am VIVIDLY aware of the differences. tho honestly, I do think I was in denial until Orion got all of his dx's and Heron said she had no freinds in high school.

Oh, and I also know a mom/daughter where the daughter is pretty akward looking, but they enter her in pageant after pageant. I mean, she looks a big less awkward in all that makeup, but . . . urgg

skrink
02-03-2012, 07:24 AM
I was that kid, too. Still am. :) My dd is an interesting blend of me and dh. He's a self-defined geek, but was always pretty much happy and oblivious, bouncing along. He went to a huge, urban school and was able to find a group, has fond memories of school. I bet there was teasing and maybe some lightweight bullying, but it slid right off of him. Either he didn't notice (highly likely) or he remembers it the way he wants to remember it (also likely - quite the revisionist, nothing bad has ever happened to the man!!). I was the gloomy, shy, smart, quiet kid in a graduation class of <100. Rural, poor. Happiest day of my life (before marriage/kiddo) was hs graduation. Dd is bouncy and oblivious like her dad, but she definitely doesn't fit the mold. She isn't at all compliant, doesn't have that "respect authority" like dh (I never had it either, but I flew under the radar enough that no one noticed). I can't wait to see who she becomes. I'm a little afraid... ;)

I always knew something wasn't quite as it should be with dd. Dh was hard to convince. He was of the "there's nothing wrong with MY kid" camp. It sort of sucks being the one who is always bringing up the problems and saying that, you know, maybe we need some help here, when he was her constant white knight. It used to make me feel crappy as hell, poking holes in this perfect child image he had created (and that I so desperately wanted to believe in myself), but we would be nowhere if we just stuck our heads in the sand.

Accidental Homeschooler
02-03-2012, 10:01 AM
I was that kid, too. Still am. :) My dd is an interesting blend of me and dh. He's a self-defined geek, but was always pretty much happy and oblivious, bouncing along. He went to a huge, urban school and was able to find a group, has fond memories of school. I bet there was teasing and maybe some lightweight bullying, but it slid right off of him. Either he didn't notice (highly likely) or he remembers it the way he wants to remember it (also likely - quite the revisionist, nothing bad has ever happened to the man!!). I was the gloomy, shy, smart, quiet kid in a graduation class of <100. Rural, poor. Happiest day of my life (before marriage/kiddo) was hs graduation. Dd is bouncy and oblivious like her dad, but she definitely doesn't fit the mold. She isn't at all compliant, doesn't have that "respect authority" like dh (I never had it either, but I flew under the radar enough that no one noticed). I can't wait to see who she becomes. I'm a little afraid... ;)

I always knew something wasn't quite as it should be with dd. Dh was hard to convince. He was of the "there's nothing wrong with MY kid" camp. It sort of sucks being the one who is always bringing up the problems and saying that, you know, maybe we need some help here, when he was her constant white knight. It used to make me feel crappy as hell, poking holes in this perfect child image he had created (and that I so desperately wanted to believe in myself), but we would be nowhere if we just stuck our heads in the sand.

This sounds very similar to the process we went through. It was hard because dd is so verbal and did everything early or early normal range. She is very bright and quirky and we just thought that was great. Then the only thing her preschool teachers talked about was how creative she was and how she came out with so many "interesting" comments. We really thought we just had a "spirited child". It wasn't until kindergarten that the differences became more worrying, especially the not being even aware, I think, or adult authority. Kids, adults.. they are all just people and she treats them the same way and that did not fly in ps. Dh had a very hard time and when I finally convinced him that something was up, he was the one who said that we need to get the evaluation and get on top of it. I was kind of going back and forth with it.

Staysee34
02-03-2012, 12:04 PM
Definitely seek out a full evaluation for your son! In my experience, an hour long evaluation will only get you a report telling you what you already know. The evaluator may be qualified but not in the right field and they will spend the majority of that hour gathering information from you rather than child observation and testing. It's a good way to get the ball rolling but a full eval by a skilled professional with real world experience is (again IMO) the best option. Good Luck AMM!

AddlepatedMonkeyMama
02-03-2012, 01:00 PM
Thanks, Staysee!

Echoing others, we saw our son go from "quirky," "highstrung," and "energetic" to TRAINWRECK when he got to kindergarten. I'm reading the Asperger Syndrome and Difficult Moments book that Cara recommended (thanks, BTW!), and it describes how behavior worsens when these kids are under stress. They simply cannot access the part of the brain where all the behavior lessons (like "no hitting") are stored. They often revert to their old, inappropriate responses to situations instead of the correct ones that we've so painstakingly taught them.

Lou
02-03-2012, 01:05 PM
Um, Lou, didnt I once tell you we arent much alike? way to make me eat my words!

lol, I'm sure if we dig deep enough we could find some more similarities. ;)

I often feel comfortable with my quirky kids being alright as adults as long as their self esteem isn't crushed. People freak out at the idea of a Dx, but I welcome it because IMHO, it gives me fresh ideas on how to help my quirky kids keep that self esteem in tact as well as grow socially so that when they are adults they can feel confident to conquere whatever they set their minds/hearts on. Everytime I read a book on differences I get ideas.

Both dh & I are quirky different (in different ways) which makes our two children who are both a quirky perfect 50/50 blend of us (however, they themselves are polar opposites, so we have it all in one or the other here) They have opposite weaknesses, opposite strengths, opposite learning styles, opposite everything! It drives me nuts, because I will spend time focused on one and their needs, which ends up completely dropping the other one's needs, so I'm in a constant ping pong game of life. And the dh is generally in complete opposite view of me when it comes to something with the kids, so we are rarely getting anywhere with anything here. :/

I will say that the dh will support me when I feel strong enough about something, because he knows I'm the one that reads the books, researches and has to deal with the kids all day. So kudos to him for that, but when it comes to getting help with a confusing topic for me, and what to do about it, he is not the person to turn to for bouncing ideas or brainstorming problem solving ideas. He's cut and dry, one right answer, not many answers that could work type. If the answer he had didn't work, then it wasn't the right problem. lol ;)

Accidental Homeschooler
02-03-2012, 02:00 PM
They often revert to their old, inappropriate responses to situations instead of the correct ones that we've so painstakingly taught them.

Yes, and then the school staff assumed that the only way she could demonstrate the inappropriate behaviors is because we didn't care enough to teach the appropriate ones to her in the first place.

dbmamaz
02-03-2012, 02:06 PM
Wow, you all are reminding me why I REALLY don't want Raven I school. Sigh.

Staysee34
02-03-2012, 02:52 PM
I can honestly say, after having homeschooled Julia since August now, that I regret having ever sent her to PS in the first place. One the other side of that regret is feeling assured in my decision to never send her back. She's a completely different kid and she's learning so much. We still have a long way to go but she has finally (after3 years) figured out her basic addition facts. We've been working on them slowly but diligently since the beginning of the year and just in the past week...SHE FINALLY GOT THEM ALL! Now subtraction....UGH! I've also figured out that even though she loves workbooks, she loves the computer more haha! I signed her up for T4L this week and she's really liking it. She has another evaluation coming up soon. Hoping they will see the improvements just as we are at home. Then, it will be Sarah's turn. Sarah is without a doubt ADHD but completely different from her older sister. The BSC who comes here every week recommended I have her evaluated just in case I would ever need services for her as well. I've been holding off because she already has a blood disorder that requires routine visits to a hematologist and bi-weekly blood work. I don't know if I want to add anything else to her plate or to mine for that matter. I know what her issues are and I go down this road with her sister every day. I'm not sure I need the diagnosis for her.

Cactus Flower
02-03-2012, 04:21 PM
We, too, went through both types of evaluations. The one hour consult isn't going to give my much information. They will probably say, as they did to us, that there is "something there" and suggest that you have a thorough evaluation. Even the thorough was rather anti-climatic with us. It didn't help because the evaluation report said mild Aspergers and Sensory Intergration Disorder. Our grandson wasn't considered severe enough in today's budget cuts for any help from the school system (we were using the K-12 program then) and special testing considerations. There was really no help from anyone as to better ways to teach him. I've relied on a great deal of reading and research to guide me. There is a lot of trial and error, a lot of trusting your intuition, and constant research to stay as up to date as you can on theories. Then you try to find what works best with your child.

But, to your question, I would go with the full evaluation, but in the meantime trust your instincts and search for methods that work best with your child. Don't wait for the results to start. It certainly isn't going to hurt the child, and if you get a diagnosis of Asperger's you will have a head start. Good luck.