Hearing the diagnosis

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I went through this yesterday!

I was not at all surprised with the psychologist told us S1 has high functioning autism (her words). I've done a ton of research, and everything pointed to this diagnosis - I even joined several boards on the subject (like WP) based on my suspicions - but I'm not the one with a relevant degree, so I deferred until a professional told us definitively. In reality, it was pretty anticlimactic.

The backstory is that S1 was speech delayed (the first clue), and has been in speech therapy since he was 3. He's now 13. He also has what the school defined as a learning disability in reading comprehension, inference and expressive language (the second clue) and has had a full IEP for those things since 3rd grade. For a long time, I thought that was all it was. Until I realized that toddler tantrums never went away, and the fact that those tantrums lasted for an hour, with non-verbal growling and head banging (the third clue), that this was not normal. Hence all the research I did.

After she told us, I got to the part I really wanted to talk to her about - what do we do now? She recommended a couple of books, only one of which she could find so that I could see the cover. The other she didn't even give me the correct title, so I have no idea what I'm looking for on Amazon. She mentioned that we might find therapist directed social groups helpful, but did not suggest any providers. She suggested pragmatic speech therapy, which he's already been receiving since he was 3. Other than that, she was not much help. She did offer to do a couple of sessions of counseling if we got into a bind with something we didn't know how to deal with.

Also it took forever to get here. The first psychologist I went to wasn't developmental, didn't do the ADOS, just parent/teacher surveys, told us it was iffy and then told us to find a developmental one. I went to him not knowing what was wrong, just that something was (the tantrums). This first psychologist was the first to suggest Aspergers. I admit it did throw me for a loop, because I was expecting bipolar disorder (which is what I have). Then I did some research and decided that maybe he wasn't far off the mark. So off I went to find a developmental psychologist.

That took about 6 months to find one on my insurance, because I literally had to call each one on the provider list to verify that yes, indeed, they did what their profile said they did. And we could not afford to pay out of pocket for the big autism center here in town, which even though they worked with our major insurance company, our particular plan did not have them as a preferred provider. And the first psychologist, who was on our insurance plan, only referred us to the autism center and a couple of private folks who did not accept insurance at all. So when I found one both on our insurance AND who could do what we needed her to do, I put up with the less than stellar/unprofessional service because I didn't want to start over. Did I mention that the test administrator took so long to schedule it all that the authorization period ran out two days before the scheduled testing, and we had to re-up it. Which the insurance company actually did immediately, but I would have never have known if I didn't do some calling and forcing the issue two months later.

In short, I was very frustrated with the whole process of getting to a diagnosis, that having it was sort of, "Well, about d@mn time! Let's move on now." True to form, as I implied before, I'm not getting much help there either. We'll certainly figure it all out on our own, but a little help would have been nice.

On a related note, we told S1 as soon as we got into the car. He's 13, he knows he has issues. Our younger son, 10, who was also in the car, knows he has issues. We all know why he was tested and for what. There's nothing to hide or tiptoe around. So he wanted to know right away and we told him. He did ask what autism meant, and all I said was that he had some brain quirks, and I'll find some resources that will help explain it better. That was yesterday. Still looking for that.

Yep, yep, yep.

One thing that really was hard for me was to hear that kiddo has 'an elevated risk for depression and psychosis'. End of sentence. I guess there is no 'good' way to say this.

Sure there is.

Present the whole picture, not just the alarming relative one.

If the risk of psychosis is 600% of the baseline and the baseline is 0.002% (made up for illustrative purposes) the odds are good that this scary bad thing will not happen. Why not say that? Just saying 600% or 9 times higher or whatever is the act of an irresponsible, thoughtless twerp.

i have always known i was diagnosed to be 'different' (officialy PDD-NOS with hints of tourettes, ADD and a list of other things).
getting the re-evaluation that pinned aspergers on me was just a confirmation really (the initial asessment was when i was like 4 years old, and AS didn't exist yet back then).

i don't really know how to tell a child their diagnosis, as i dont remember how i was told, or even if i was 'told' as such at all.

I don't think anyone informed us about co-morbids in such a harsh way. It was just listed as things to look out for as part of a list of things, kind of like when they tell you about possible side effects to a med. I wasn't bothered by it b/c I maybe figured out not getting on with others but having to deal with them anyway might be an issue that would cause other things.

I felt something was off from around day 1. My child never slept, he wouldn't latch or take a bottle, and he was incredibly difficult to sooth. He would arch his back like a bracelet. I started googling things.... This went on for about a year. Over that first year he hit every developmental marker at the end of the "expected range." During the second year I became very conscious of the fact that he couldn't do the physical things all the other kids around his age could do. The other two year olds were running and excited. He seemed afraid all the time. It was very upsetting. But by the time he actually turned two it all seemed to be getting better but I told our pediatrician about my concerns. He said to get him tested.

We did, it was a long road through early intervention (useless and a total waste of time for us. I point blank asked them after they tested him and at his induction "Is he autistic?" and they emphatically said no. The early intervention team literally laughed out loud.). 6 months later they kinda politely gave up and said to get him tested by a developmental pediatrician for developmental delays. Dealing with EI was an angry gut wrench. They kept saying the opposite of what I expected (he's ahead socially and in line physically, but he has some life skill issues---they called this autonomy--- and sensory issues---which I know now to be code/entry words for autism.). EI went from saying he barely qualified for services to he has developmental issues in 6 months. Meanwhile he seemed better than ever his physical skills were improving and was less afraid of other kids.

We took him to a big name Philadelphia doctor who announced PDD NOS after doing an ADOS and some other tests. I was prepared because I had been reading about it for 2 and a half years. My wife was not. Both of us were devastated overall. But not because of the way it was announced to us but because we had been told for over a year it wasn't the big A and then suddenly it was. The delivery from the developmental pediatrician was weird and still is. (There is a thread out there where I asked of it was normal "Confused by what the doctor keeps saying...". You can find it by clicking on my name or searching for it.) The doctor said it was definitely PDD NOS. Gave the whole chronic life long neurological disorder creed. Said it was certain. But dangled things like "If he never received any services or help he would be fine," "he will be indistinguishable from his peers," "job, marriage, kids are all on the table for him," "He'll be fine." Although they produced a long report it didn't say exactly where he scored low and didn't offer specific services for any one thing. It noted where he had score high. When I asked for more details very little was given. Basically it said he was really smart but made poor eye contact, flaps when excited, and used scripted speech which was consistent with PDD NOS.

At the end were the recommendations. The first was ABA, the second was floortime, etc but the Doctor said these weren't necessary and didn't think they would work well for him. Basically she said take him to the public preschool and see what he can get. She was nice about it. But it was both incredibly sad for us as parents and incredibly frustrating. We were told something was wrong with our child and that it couldn't be improved or alleviated because it wasn't that bad. The doctor started out talking about positive things about our son, pointing to the no other symptoms part I guess, but then she said "but," and I knew what was coming. Good news with bad. It didn't make anything easier really. What made it hard though was at no time did she make it sound like she was part of a team or anything. There was no feeling of we are in this together or even unspoken sympathy or empathy. There was no here is what you do, or opinion from her other than the fact of the diagnosis. That she was strong on. The recommendation section might as well have been blank because none of it was actually being recommended. It was presented as a" list of things some people choose to do." The first two things listed on it were in fact NOT being recommended. The recs were just cookie cuter that they give to everyone and that they change the number of hours next to the ABA at the top. In fact I have never been sure that the entire report is also plug and play. So at the end of the day the Doctor might as well have said "PDD NOS! Good luck! Bye!" The only actual piece of advice the developmental pediatrician offered was an instruction to not go on the internet and read "horror stories" as she put it because people only talk about the bad. But outside of contacting the public pre school she had nowhere and nothing for us to do.

We've gone back like every 3 to 6 months-ish since. I don't really know why. The developmental pedi just says see you in six months! We've been back 3 or 4 times now. The last was the worst because every other time it was all "he's on track!" "Looks good!" "He's gonna be fine!" He drew pictures and told her jokes. During these follow ups we've talked about starting mainstream kindergarten as the goal and she's talked about it like it was a given. But the last visit did not go that way. My son for whatever reason acted like some sort of wild animal flopping all over the place and talking like some sort of demon child. I had never seen anything like it from him before, honestly. But she flip flops and goes from saying "he's on track!" "Looks good!" "He's gonna be fine!" to "he'll be in special ed his entire life." It was like she hadn't read over any of her previous notes from past visits. How does a doc go from saying that he is going to be ready for mainstream kindergarten to life long special ed? We had other soft evaluations done and our developmental pediatrician was almost defensive about finding out if they contradicted her. (They did not but all suggested we get another formal evaluation done as he gets older.) When I asked about him getting retested that was when she said he would be in special ed his entire life.

If you are asking how to break the news? The long story above is a how not to do it. You can be wishy washy but don't flip flop around. Don't say one thing and then another. Don't dangle hopes/ideas in front of parents and then pull the strings back. Don't say this is the way it is there is nothing you can do about it. Be honest with people about what is going on. Be receptive to what they are looking for. Be prepared to explain things both in broad strokes and in minute detail. Be careful about making predictions you'll never be exactly right. Provide somewhere and something for parents to do. Explain that it will take years to really know where a child is going to go and what they are going to do. EI flat out said no Autism and then they said possible ASD get him tested (they did this the day we were filling out forms to transfer services to a private service because he was going to age out). The doctors said ASD but that he'll be fine (jobs, marriage, kids...) and then said he'd be in special ed his entire life because he won't be able to interact with NT kids. When you talk to parents be honest about maybe not knowing because things change from moment to moment, don't base your opinions and statements on the single moment or just one moment. Explain that truly understanding someone takes time...it takes years. And that although what you are seeing that day may be indicative of "something,' that something might not be entirely what you are seeing that day. Tell them you are there to help. And actually try to help.

Sorry for the length and detail. It is still very fresh in my mind.

It's good to be able to release all that, isn't it?

This kind of thing is maddening. Did you have an opportunity to ask for clarification?

*shakes my head*

I am really sorry. I don't understand anyone being able to give a lifelong prognosis. What is the point of 3-6 mo visits then, as you say?

I'd say more, but I am close to speechless.

(As for the odd behavior, your child might have been upset by something at the office from a sensory perspective or fear of something. I don't know if dev peds give shots or if you have to go to a regular ped for that. Fear of shots could do it, though. My son always acted more "neurological" at the ped's office for that reason. )

After the negative visit I started to think they were just to bill us to be honest. Prior to that I assumed it was to make sure there was no regression type stuff going as well as to confirm the diagnosis.

He likes our current actual pediatrician very much and she does the shots etc. We had one before we moved that he didn't like at all but this new(er) one he really likes. The developmental pediatrician is a different person and we have to go to the hospital to see her etc. I also think that it is possible, of course, that my son doesn't like the developmental pediatrician. I think he knows what the developmental pediatrician is saying and perhaps doesn't like it very much. Conversely, I also wondered the exact opposite...if he thought he was showing off and being silly to impress the developmental pediatrician.

The dev pedi entire demeanor is weird to be honest. She's authoritative but I feel like their is a sort of passive aggressiveness, and/or that she gets a weird schadenfreude enjoyment from giving bad news. God complex-ish. Her credentials are good but I don't wouldn't recommend her all things being equal.

Good to be able to release all that? I'd like to bop the EI the dev pedi on the head a bit. Dealing with them has been like running down a hallway with moving walls...

It was all pretty shocking, the grand "flip flop" that is. I was more shocked by that than by the original diagnosis to be honest.

When pressed as to why? She said that he would probably make it though K to 2nd grade but that by third grade the social demands would be too high and that his mental skills wouldn't be able to compensate for his lack of social skills. Frankly, while I admit that is certainly possible, I don't buy that...yet...and am not sure it will come to pass or come to pass entirely. The four year old says please, thank you, shares his thoughts and comments, cares about the other kids in his class and playgroup, interacts with adults and children. He doesn't run or jump or climb well and he feels anxious a lot. I would think both special ed and mainstream would offer unique problems for him. but the kid is 4, and has a lot of growing up to do. I don't know what his future really holds. But I will say this , he emulates the typical peers in his integrated class (as well as what he calls the "silly things" his sp ed classmates do as well)...even if it was just for K-2 I think it would be helpful. His school is still acting like mainstream K is the plan. When I told them about the experience at the developmental pediatricians they all made OMG faces and said they it wouldn't be appropriate to send him to special ed K. Which goes with what my gut has always worked out with my brain...we will have to see what the boy is like at 5, 10, and 15 before really knowing what he will be and do with his life.

My point for the original poster is don't jerk the parents around. Don't make predictions that will never be exactly right or often even close. Look up the first Autism patient. His docs wanted him to be committed. He ended up working in a bank and is now retired spending most of his days playing golf. As a doc you should offer to be part of a solution to make things easier for a kid and their parents and not just make announcements.

This one?
[youtube]http://www.youtube.com/watch?v=QqVqxWU-Itg[/youtube]

I wonder if the apparent enjoyment of delivering bad news, which I also thought I might have detected, is just a distancing/self-protective technique. I read several articles about the need to train doctors in bedside manner. I hope it's that and not actually taking some sort of pleasure in the situation.

I think so, too, but then I'm a very skeptical person in general.

It could indeed be that hallway. Frankly Galaxy Quest would probably be a fun joy ride compared to some of the issues at work here...

I agree that part of the docs behavior is bedside manner. And it was clear during the diagnosis that she was trying to provide a bit of space between her and us and gauging our reaction. She's said she had parents scream at her and cuss and tell her she was crazy. But she seemed surprised that we were upset both during the diagnosis meeting and the first follow up meeting... Which I also thought was weird. I do think that she has a small thing going where she does feel better about herself (and her life and kids which she has mentioned as NT) in a sort of thank god it isn't me sort of way. It is very very very faint, but I think it is there. She may not even be conscious of it.

I don't know the point of those after diagnosis visits yippy. Like I said I thought at first it was to in general confirm the diagnosis over time and to make sure he wasn't regressing--I quickly also thought that it was at least partly to build her yearly billings.. And now I have no idea. Because he's so different from when he got the diagnosis (because he's a year older!) I don't really see what the visits with the developmental pediatrician are for or what good they are doing. The grand flip flop as I call it just sent of a wave of hysteria and tears and doesn't seem based on current reality so what good was it? Not much. Even if she is right it will take years to know, what use is her guess about the future right now/currently? Useless. Ugh.

I think the continued visits are only helpful if they're building up data to get a clearer overall picture. If they're going to ignore what they've seen at past visits and treat each new visit as a stand-alone, then I don't see the point.

^^^ This. I could see frequent visits in the beginning to develop a decent sample size of time to interact and observe. Beyond that, why? Especially if she is not going to look at the totality of data.

I don't know if she was just looking for a bad visit to judge and now that she got it she is using that as the key bit of information? It makes no sense to me.