What to expect at ASD evaluation? Update in 1st post

[Innisfree]

So, a lot has happened in a week.

 

The doctor's answer was not very helpful. He didn't explain if this should be regarded as a screening visit, simply said he couldn't make predictions ahead of time, and seemed annoyed to be questioned. He's probably fine at what he does, but I didn't have good feelings about the results he'd get with my dd.

 

I spent a couple of days scrambling to explore other options, and came up with a private neuropsychology practice 2 hours from us. When I talked to the staff, they understood my need to make a quick decision about the other appointment and the director got us in yesterday morning for a consultation.

 

The appointment went very well. The director met us with an adorable therapy dog on a leash, established a good rapport with dd, and obtained her cooperation. They got through the ADOS-2 screening yesterday, and while she hadn't had time to score it yet, she said dd is on the spectrum. There will be two more visits for other testing. She said dd is clearly intelligent and has a lot of strengths.

 

In the five years I've been dragging dd to one appointment after another, trying to figure out what was wrong and what we should do, this is the first time we've left an office and had dd say "Can we come back here again?"

 

I've spent the last twenty-four hours reeling between relief that we're getting an answer that feels right and anger that it took so long and so much agony. The bad advice from people who were supposed to know better, the years of pediatricians and therapists and psychiatrists... anyway. And then the hope that this time we're on the right track.

 

So, that's where we are today. Once this diagnosis is firm, it turns out there's a place that does ABA therapy for autistic kids practically around the corner. So, today I'm trying to breathe deeply and keep my fingers crossed.

 

 

 

 

We've been on a waiting list for months, and finally got a call. Appointment is in 10 days. This is at a good children's hospital/university medical school clinic, but now I'm getting worried because they say the evaluation is only about an hour long, with one doctor. 

 

I told them dd9 typically shuts down and refuses to talk. Heck, I'll be lucky to get her to leave the car and enter the building. But they say the doctor will ask me a lot of questions. I'm fine with that, but I don't want the evaluation based on their impressions of what I say, kwim? What if I get something wrong? I'd thought they'd spread something this important out over several visits, maybe with multiple people. 

 

I'm sending the doctor an email with questions today, but what have your experiences been for an autism spectrum evaluation? Is this typical? I'm hoping her very lack of cooperation can be helpful diagnostically, but I just don't know. I want the right diagnosis, after all, or what's the point?

[Crimson Wife]

What may happen is that appointment may be an initial screening, with a more in-depth eval if there are "red flags". My little one skipped that step because she already had an existing diagnosis of Global Developmental Delay from Early Intervention. So the developmental clinic went straight to the full eval with her. That involved 3 visits- two hourlong parent-only appointments and an all-morning assessment of DD in between.

 

My DS did the initial screening visit only. I wouldn't even have brought him in at all if his little sister hadn't had an autism diagnosis. But her having ASD made me question things about him. The pediatric neurologist understood why I was concerned, but she felt strongly that his symptoms were due to a combo of ADHD + anxiety + giftedness. There were other things that would rule out a diagnosis of Asperger's or PDD (this was under the previous DSM-IV). She didn't think it was necessary to have the full eval.

[Tokyomarie]

Could this be an "intake" type of appointment where the doctor's aim is to get some background information and observe your daughter for a bit. Such an appointment can be used to develop a plan for further evaluation, which tests to use, which other professionals to refer to look at specific areas such as Speech and OT.

 

I would be hesitant to accept a final diagnosis based on a 1 hr appt. If further team-based evaluation isn't suggested, ask about it and ask about recommendations for therapies.

[Innisfree]

What they told me was that after this appointment they could give me a diagnosis, and I'd get a written report later. 

 

Cause for concern, then?

[PeterPan]

Yup, around here that type of appt is a one hour screening where you get a thumbs up stay or thumbs down go somewhere else.  And no, we canceled the appt after I waited months and months for it.  I realized I couldn't AFFORD to keep going at $350 an hour for evals with that place and it turned out they had a reputation for not being homeschool-friendly.  The hs-friendly thing REALLY matters with spectrum or you can get a lot of blame shifting.

 

If you want full evals, you need to continue through the process to full evals.  That's what will give you the IQ and lots of detailed testing.  That up or down 1 hour appt is NOT going to be that.  It's really a question of what you're wanting and who you want to do that.

 

Sorry it's so stressful.  

[Lecka]

My son's appt was 4 hours.  Of that -- about 3 hours was with us having interviews and them doing stuff with him.  3 scales/tests were done just for autism.  He did not really do the IQ stuff -- it was not what they picked for him and he was 4, so not the thing for him.  After 3 hours, we waited in a waiting room about 30 min, then spent 30 min with them and got a one-page report with a diagnosis.  The full report came in the mail after about a month.  

 

Before that -- we filled out a ton of paperwork.  We also went to the pediatrician who did an intake form and it had to come out with red flags.  That is to save us a trip, we are in a more rural area and it would be a hardship to make multiple trips to Kansas City.

 

He had the ADOS, CARS, and another one -- they were all autism screenings.  

 

The people were extremely nice.  We had a speech therapist, and two other people.  I had a long parent interview with the speech therapist.  One woman was mostly with my son.  She was very good with him -- he did better with her than he would do with a lot of people, at the time.  We also saw a doctor with him who asked about his health and I think was to rule out any physical causes or if he might have been having seizures and things like that.  

 

You might be able to call and ask what they are going to do.

[Spring Flower]

:grouphug: I don't know what to tell you but I can share what we have experienced so far. I initially had an appointment with our ped and she had to fill out a lengthy referral. From there we went on the waiting list. We have been on the waiting list for 7 months and our appointment was just scheduled for December. I was sent a large packet of questioners to fill out along with a letter explaining a bit about what to expect. The forms took almost 4 hours for me to fill out. Our appointment is supposed to last 6-8 hours and DS will be evaluated separately while I am interviewed. I was told to find childcare for my other children. I have no idea what evaluations will take place in those 6-8 hours. I've been thinking about posting that very question here when I saw this thread. 

 

 

 

 

 

 

[Spring Flower]

What they told me was that after this appointment they could give me a diagnosis, and I'd get a written report later. 

 

Cause for concern, then?

 

It would concern me, but I don't know what I would do in your shoes. I would probably still keep the appointment. 

[PeterPan]

:grouphug: I don't know what to tell you but I can share what we have experienced so far. I initially had an appointment with our ped and she had to fill out a lengthy referral. From there we went on the waiting list. We have been on the waiting list for 7 months and our appointment was just scheduled for December. I was sent a large packet of questioners to fill out along with a letter explaining a bit about what to expect. The forms took almost 4 hours for me to fill out. Our appointment is supposed to last 6-8 hours and DS will be evaluated separately while I am interviewed. I was told to find childcare for my other children. I have no idea what evaluations will take place in those 6-8 hours. I've been thinking about posting that very question here when I saw this thread. 

There's an autism center like this in a big city near us, and yes it has a year wait.  Very well-regarded.  Sounds like you're going to get an awesome eval!

[Innisfree]

I just talked with the admin assistant again, asked if maybe this was an initial screening visit or the whole deal. She said this was a diagnostic visit and we'd leave with an answer, but if they needed to do more testing they'd let us know then.

 

When I said I'd heard from others that their evaluations took 4-8 hours, she said "well, I guess everyone does it differently."

 

So, ugh, I just don't know. It's covered by insurance, but then the insurance company will feel we've had our evaluation and don't need this particular one again.

 

 

We do want full neuropsych evals, but the psychiatrist (who referred us to this place) said to start with the ASD eval because she thought that would eliminate some duplication of testing.

[Innisfree]

I'm going to email the doctor and see what he says.

[Spring Flower]

So, ugh, I just don't know. It's covered by insurance, but then the insurance company will feel we've had our evaluation and don't need this particular one again.

 

 

This would be my main concern with keeping the appointment. I'd call your insurance and ask them. My insurance website has a surprising amount of helpful information about ASD testing. My ped said it is because they are required by law to provide it. 

[PeterPan]

I just talked with the admin assistant again, asked if maybe this was an initial screening visit or the whole deal. She said this was a diagnostic visit and we'd leave with an answer, but if they needed to do more testing they'd let us know then.

 

When I said I'd heard from others that their evaluations took 4-8 hours, she said "well, I guess everyone does it differently."

 

So, ugh, I just don't know. It's covered by insurance, but then the insurance company will feel we've had our evaluation and don't need this particular one again.

 

 

We do want full neuropsych evals, but the psychiatrist (who referred us to this place) said to start with the ASD eval because she thought that would eliminate some duplication of testing.

One problem is that *most* people are coming from the ps, where they've already had some kind of baseline psych eval and don't really need the IQ, etc.  As a homeschooler you NEED the info from the full testing.  Hospitals have their system, and it sounds like you've gotten caught in it.  Call a private psych and see the difference.  A private psych will pick up the phone and answer your questions directly.  A private psych will give you at least a partial list (enough to give you a sense) of what kind of tests he'll run.  Private vs. hospital.

 

Is your insurance compelling you to stick with this place?  Even though you've waited, you might call around and see what your options are.  

 

See the other question you ought to be asking is what this type of eval is a feeder for and whether their goals are your goals...  If the eval is a diagnosis with the goal of feeding you into therapies in their system, is that what you're wanting?  Or are you wanting full evals that give you information on how to teach him better?  Not ever practitioner has the same goals, so you want to make sure their goal is your goal.  

 

I know it's hard, especially when you've waited so long.  It made me SICK to cancel that appointment after I waited 4 months.  But it was the right thing to do.  I don't know what the right thing is in your case.  To me it's just that bugaboo of being caught in a system where you can't say upfront what you want/need and get it.  Since you have time, you might just leave the appointment but do some calling around to see what your *options* would be privately.  Or talk with someone who has used this psych to see how it worked out and what it's really like and what they really do.  I think you're right that sometimes the person on the phone has NO CLUE.

[Lecka]

You got referred for this test, by the people doing the full eval? 

 

I would assume they are going to be able to use the information. 

 

I might not expect an answer from this one day, though. 

 

The people who do the full eval may get information from score ranges from whatever they do.  They may not just be taking a one-word answer from it. 

 

 

[Innisfree]

You got referred for this test, by the people doing the full eval? 

 

I would assume they are going to be able to use the information. 

 

I might not expect an answer from this one day, though. 

 

The people who do the full eval may get information from score ranges from whatever they do.  They may not just be taking a one-word answer from it. 

 

No, it's more complicated than that. The pediatrician referred us to the psychiatrist, who is an hour away in the capital city, in a treatment center associated with the big regional hospital and medical school. Probably naively, I thought that association meant these were the best people anywhere near us. And, we'd tried local people, without much luck. These were at least pediatric specialists.

 

Then we waited about six months for them to call us, and finally saw the psychiatrist, and started the process of testing meds. We've been seeing them for a year and a half now, with the first psychiatrist leaving and being replaced by another about a year ago.

 

Last spring I got fed up with lack of progress and said look, we've tried meds xy and z, we're still seeing problems, and look at this and this and this. Dh thought we might be seeing hfa. Psych said yes, I bet that's right, and referred us to the asd evaluation center associated with the same medical school and the local (well-regarded) children's hospital. So we started another long wait, still assuming this was the best place to be.

 

I asked then about full evals, and said I'd rather be on both waiting lists at the same time and get things done sooner. I really wanted to have all our answers before September. But the psych said there would be duplication of tests if we did it that way, and it would make sense to do the asd first and then see what was left. She seemed to believe the process would be like others have described, with multiple specialists and tests. That's why I was so taken aback to hear about a one hour appointment and diagnosis.

 

I think OhElizabeth is exactly right that I've gotten caught up in the hospital system, only it looked like the best place to be. Now I'm beginning to wonder. I will check out other options while I'm waiting.

 

I've sent an email to the doctor doing the evaluation. Hopefully he'll answer, and maybe shed some light.

 

Thank you to all who have answered. It's late, and I'm tired and frustrated, but I really appreciate the help.

[PeterPan]

To find private evals, try gooling your state plus autism plus neuropsychologist and see what pops up.  Look for referral lists through peds, OTs, or other practitioners.  You'd be surprised how much these referral lists are floating around the web as pdfs.  Ask around.  You are NOT the only one in this position.

[Lecka]

Ask the psych who referred you to this place, too, I think, once you have the information about what this place will do. 

 

 

[Innisfree]

bumping after adding update

[PeterPan]

I'm so happy for you that you found a good place to work with and are finally getting answers!!!   :hurray:   

[Crimson Wife]

{{{hugs}}} for the diagnosis (it's not easy to hear even if it is no surprise) and I'm glad that your DD had good rapport with the neuropsych. I hope that the further testing helps bring clarity to what may help your DD improve her functioning.

 

Tony Attwood has a book on Asperger's Syndrome in girls that you may find helpful. Our developmental pediatrician told me that HFA can present a lot of the same challenges as Asperger's as kids get older.

[Innisfree]

Thanks for all the help, everyone. Not one specialist told us about neuropsych evals. If we're finally getting answers, it's because of the folks on this board.

[kbutton]

Hugs and best wishes that you'll get answers quickly. It takes time to take it all in, but it sounds like you are on the right track! 

[Spring Flower]

Thanks for the update! I'm glad to hear things are going in the right direction.

[Mom22ns]

What a terrific update! I'm so glad you found an office/Dr that will actually be of help to you. I can remember going through a period of years, trying to get a diagnosis, trying to figure out what therapies and interventions to do, constantly stressed and scrambling. In the midst of it all dh and I had this conversation where we said, there should be some Dr out there managing ds's care and telling us what to do instead of us, clueless as we are doing it ourselves. We were so frustrated. We never found help. None. We found a terrific OT. We found a good school district that helped, our pediatrician was marginally helpful, the neurologist did a great job with ds's seizures... you get the idea. 

 

I hope that you have found the case manager that you need who will guide and direct you through the maze of raising a child on the spectrum. I'm glad that at least for the moment you are making headway and get to feel a supported.