Getting diagnosed at Navy hospital. What do we expect?

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First off I want to say that I do not wish for my amazingly unique daughter to change. I simply want to help her be the best she can be in a world that doesn't understand her. Perhaps this is why we have waited to really look into what's going on with her. She is 5 and started kindergarten this year. I'm still not sure if I am ready for her to be labeled but we (my husband, her teacher, and myself) are pretty sure she's on the autistic spectrum. We are Navy. I do not like having no idea what to expect. She has high anxiety, stims (rocking), losses eye contact when upset, doesn't do well with unplanned changes, gets overstimulated by loud noises (I always volunteer for any possible triggers so she can step out if needed), has a hard time with pretend, loves dinosaurs (used to be cows), is incredibly smart, and most of all is starting to realize that she's different. We have never told her so. But when no one else rocking in their chair in class and you are an extremely smart little girl you might start to wonder. We have such an amazing teacher this year that gets her. Next year we might not be so lucky and I can see that she's starting to get anxiety from her uniqueness. She has expressed a desire to be like her friends.

My husband and I decided to use one of our resources which was free counselors to get an opinion on if a diagnosis would be good for her. Two counselors later and a discussion with her teacher lead us to try to get a consult at our Naval Hospital. Only problem is that they insist that she's present while we talk about her. I'm worried that its going to make her anxious or feel like something is wrong with her. Which there isn't. We aren't even sure what it is that's going on.

So my questions are: What should I expect during that first appointment? Do you think it will raise her anxiety? Any tips for this journey that we have started on? What can we do to help her see that she's not different in a bad way but a good way? What happens after that first appointment? Anyone have any experience with doing this thru the military?

Thanks

It's not a "label," it's the identification of her handicaps, so that she can be understood and receive assistance and/or accommodation, rather than struggle helplessly all her life with invisible disabilities. It's only a label to those who are intolerant and judgmental and they will always treat her poorly for being different, "label" or no label. You're not branding her as defective, you're helping her with a problem that she would have, whether it had a name or not.



She may be a bit young yet for explanations, but the simple explanation is:

The way people see the world around them and they ways in which they do things depends on how their brain is wired on the inside, and different people have brains that are sometimes hooked up in different ways, so they see and hear and notice things differently, and as a result, they do things a little differently.

One set of wiring is not better or worse than any other, but if more people have Type A, then the people who have Type B may sometimes feel left out, because they don't think the same way as most of the group. That's okay, though, because if you have Type B, that makes you special - you have something most other people don't have - a different way of looking at things.

The more complex concepts, of sensory hypersensitivity and social impairments can be handled as they come up.

We're not in the military, so I can't speak to that part of it. You could call ahead of time and ask whether they will be doing testing, such as the ADOS (autism diagnostic observation schedule), or if it is more of an informational interview.

When DS was evaluated at age 5 the first two hours were an IQ test. It was things like the doctor would show a page with 4 pictures and ask him to point to the object she named, also having him stack blocks to match a picture, pick the next object in a sequence, etc. Then there were simple screenings like draw a circle, X, square, etc., hop on one foot, skip down the hall, etc.

The ADOS was a series of activities, most of which were kind of fun -- like look at a book of pictures and tell me what is happening in the story, playing with action figures, etc.

The doctor didn't ask a lot of interview questions in front of DS -- instead there were a lot of questionaires to fill out beforehand and bring to the appt. Although DS was in the room when she gave me the diagnosis, he really didn't seem to realize he'd been given a label, or to pick up on any of that part of the session.

It was a year later, when we were seeing another doctor about ADHD medication, that he first connected the word Aspergers to himself, because we were using the word in front of him. It turned out to be a good thing, because he could ask what it meant and it didn't have to be this big thing we had to agonize about "revealing" later.

Thank you both for your replies. The corpsman I talked to said nothing about actual tests but also seemed unsure of the whole process. Talking to her doctor isn't an option until the appointment because it all goes thru the corpsmen. Hence my worry about her becoming upset or thinking something is wrong with her. For now my husband and I are going to attend with the kids in tow so that hopefully she can not be there for any discussion since we feel that going thru a checklist of differences wouldn't be a good idea for her right now.

I love the wiring bit . That is something that she would understand (we've discussed nerves and how brain signals work). I will also make sure to not call it a label. I am still learning, as I'm sure I will be for a long time, the right wording and things to say/ do. I want to understand my little one as fully as I can simply so I can do best by her.

Did all the tests happen in one big chunk (within the two hours) or was it multiple appointments? Can it be multiple appointments? She already has an IQ test done since she was tested for the gifted program. Is it that kind of IQ test?

Our daughter was 7 or 8 with our first trip to the doctor. Although it was appointment for a possible motor issue the discussuion ended about a possible nervous tick, and ADHD. The Dr asked if my daughter could sit out on the hall chairs which wasn't an issue, while she discussed her thoughts on what was going on. Little did we know our daughter scooted over to the floor and listened through the vent in the door. I never understood why another nurse or receptionist didn't think to ask to her to move, or let us know what she was doing, but it ended very badly. To this day she has misconceptions about our conversation. She also feels the doctor believed their was something "wrong" with her, and she mistrusts most doctors and anyone in the medical profession. She was diagnosed with AS in a much larger hospital in a major US city and it was handled very professionally. They interviewed her while my husband and I filled out questionaires. Questionaires had been sent to previous teachers and care providers and data was combined. They interviwed us separately as well. They did have her sit outside when they gave us their professional diagnosis. She was in 6th grade by then. I have to admit she took the information very well and then we went out to dinner. At first it caused some depression like emotions but then we discussed all the wonderful things about her and it turned around. To be completely honest though, we are still working on accepting the diagnosis and her self concept. In different situations, challenges and life experiences these same discussions come up and we have to remind her about the wonderful person she is. I am sure this will be lifelong issue, but we still have strong communications lines going and although these discussions are not always easy she has been very successful in middle and high school.

Just wanted to share my experience. Best of luck.

DS's testing was done in one session, about 4 hours total, with a half hour break in the middle. If she's already had and IQ test I would expect it to be about half that. One thing I did to prep him beforehand was to tell him that we were going to see a doctor who would help us figure out what school would be best for him next year. (He'd had bad experiences in 2 preschools, so I think that made sense to him.) Then I said this doctor wouldn't be listening to his heart or looking in his ears, and gave examples of what tests the doctor might do -- solve puzzles, point to pictures, copy a drawing, hop on one foot, etc.

If both parents are going, maybe you could plan to bring a snack along, and if the questioning seems to go in a direction that would upset your daughter, suggest that one parent take her outside for her snack.

I do think it would be better to overhear the diagnosis right there in the room than to be sent out in the hallway and be wondering what the doctor was telling your parents -- kids can imagine all sorts of horrible things, and a clinician should be trained to deliver the dx in a calming and positive way.

If you strongly suspect ASD, you might also buy a couple of books ahead of time to have on hand to read to her after the appointment if she's upset by the discussion:
What It Is to Be Me!: An Asperger Kid Book by Angela Wine
Dude I'm an Aspie (kids edition): see link -- http://www.dudeimanaspie.com/2012/04/dude-im-aspie-kids-edition.html
All Cats Have Aspergers (I haven't read this one, but have seen other recommend it)

Thank you again everyone I have saved the one link and we actually recently had a talk with her about how normal stimming can be. She felt good and normal to know that she was not the only person who stims.

I had a chance to talk with our doctor ahead of time during one of my other kid's appointments. We kept it all very vague but are in agreement that Dad will be present and will take the girls out to the lobby to do their homework while we talk in depth. During this quick talk my little one rocked, hand flailed, had problems responding to her name, covered her ears, and had a mini meltdown that resulted in me "rocking" with her (it was a bad day and schedule was out of wonk). So I feel like our actual appointment will be taken pretty seriously even if my little one is having a good day since the doctor say what I want to talk with her about.