Autism screening WWYD

[chickypoo2468]

I'm sorry I have all the questions.

Ok so O has his first appt with the neuropsychologist at the end of March. It's a 3 appt process, the first is like just to meet everyone, the second is 3 hours of testing, the third is to go over the results.

The reason we have this appt is because in July we saw a neurogeneticist who mentioned autistic behaviors, and then we saw the developmental ped and I told them this and they referred him since it was a 6 month wait and we could always cancel later.

This was when we were finally realizing (I think the professionals knew but no one actually said it until the geneticist) that O had an intellectual disability and his issues stemmed from that, not that he was just a little behind because of his vision impairment. So it was kind of a whirlwind at the time. Sometimes I felt like he couldn't understand anything, other times I felt like you just had to learn how to get through to him in the way you needed him to. We watched videos and read things and thought we saw O in these other kids that had autism.

Now O doesn't seem to do the things we were concerned about before, or else I'm just used to it and don't notice them. He's getting farther behind in all areas as time goes on and I feel like he's too babyish to assess for autism anyway. He does have the retained newborn reflexes and he did start babbling and then stop for a long time, but I'm sure that's not enough to go on. He makes noises now but I don't even know if I would call it babbling. There's definitely no meaningful sounds. He seems like he starts to learn something then backtracks all the time. He's still hard to interact with and there's no give and take. Maybe he's just mentally disabled and that's that.

So now I'm thinking I should cancel his appt. My husband said to just take him to rule it out, but 1. I'm the one doing all the appts and this sounds like an ordeal 2. I don't want to be the crazy mom insisting on unnecessary testing, and 3. I don't want to take a spot when there are so many other people waiting. Im all about early intervention but I feel like it would be like asking them to assess an infant. And we can always schedule again down the road.

But then there's that 6 month waitlist...

What would you do? Probably cancel right?

[akafred]

Keep the appointment! More information is always better. It is possible that you meet to go over initial paperwork at that initial meeting and they say they would like to cancel or perhaps refer for different testing etc, but in no way are you wasting their time or anyone's money etc. And if the testing is informative then you gain time with early intervention and treatment.

[Deleted]

I would go to the appointment. Sorry there are so many appointments I can relate, but I would still go.

[chickypoo2468]

Lol. I thought you guys were going to be all "everyone thinks their kid has autism" and tell me to stop reading things on the internet and trying to diagnose him myself.

At least we have a pulmonologist appt the same day at the same place, so we'll be there anyway.

I hate looking back at all these appointments and tests that gave no results and wondering if it's worth it. Hopefully someday I'll know that it was.

[luvboston]

@chicypoo2468 as a mom who bops from one hospital to the other everyday I know the feeling! However it only takes 1 doctor to have an aha moment and help you with one part or the whole picture. And from my own experience it took 50 doctors until 1 had an aha moment.

[akafred]

If you keep the appointment the worst that happens is to rule out autism (or get a dx of autism, depending on which you consider "worse." Right now I assume the not knowing is worse.). If you drop the appointment the worst that happens is you lose at least a year (6+ months of "wait and see" and then 6 months wait for appt). Definitely don't lose that year!

[chickypoo2468]

Feb 3, 2017 16:43:55 GMT -5 luvboston said:

@chicypoo2468 as a mom who bops from one hospital to the other everyday I know the feeling! However it only takes 1 doctor to have an aha moment and help you with one part or the whole picture. And from my own experience it took 50 doctors until 1 had an aha moment.

Yeah and that's what I keep thinking. But then at our first visit our pulmonologist was like "you see all these doctors, but nothing is going to change" and I was like omg, am I overdoing it? Did I cross that line? But I don't want to miss anything that needs care to keep him safe and alive as much as I want an answer to why he is the way he is.

My first son had a milk protein intolerance in the form of really bad eczema. We had tons of appts and saw specialists and he just grew out of it. I still think back about how those appts changed nothing. But his skin reactions looked like allergic reactions and it could have been serious so I keep telling myself I had to do it. But O's life is so much more intense. I don't want to waste time on testing when I should be enjoying him. But really I'm not enjoying anything when I'm worrying. You guys know all about this though.

[Deleted]

Definitely been there with wasted appointments and then paying the bills later. But the majority were not wasted maybe 85 percent so overall good odds. But yeah battling traffic to be told things were nothing or the pointless sleep studies. I may still have a few in the future, but I learned my lesson as DS graduated out of children hospital care, I have switched doctors and usually the doctors are closer now.

[Deleted]

Feb 3, 2017 17:40:05 GMT -5 chickypoo2468 said:

Feb 3, 2017 16:43:55 GMT -5 luvboston said:

@chicypoo2468 as a mom who bops from one hospital to the other everyday I know the feeling! However it only takes 1 doctor to have an aha moment and help you with one part or the whole picture. And from my own experience it took 50 doctors until 1 had an aha moment.

Yeah and that's what I keep thinking. But then at our first visit our pulmonologist was like "you see all these doctors, but nothing is going to change" and I was like omg, am I overdoing it? Did I cross that line? But I don't want to miss anything that needs care to keep him safe and alive as much as I want an answer to why he is the way he is.

My first son had a milk protein intolerance in the form of really bad eczema. We had tons of appts and saw specialists and he just grew out of it. I still think back about how those appts changed nothing. But his skin reactions looked like allergic reactions and it could have been serious so I keep telling myself I had to do it. But O's life is so much more intense. I don't want to waste time on testing when I should be enjoying him. But really I'm not enjoying anything when I'm worrying. You guys know all about this though.

[

Also I don't think it's great bedside manner to say you see all these doctors but nothing is going to change. I mean it's possible he has something that can't be treated but it's possible that there are things they can treat- you know? I fired my ENT for not being supportive of his hearing aids. I mean there is virtually no drawback to hearing aids- they are non invasive and pretty much can only do good things (unless programmed terribly or something). So yeah I mean they need to be supportive.

[zaraceligon]

I'm agree with everyone, keep and go to the apt. Don't be so hard on your self, it's always hope and something the we can do for our kids. I totally understand the been most of the time with apt is very exhausting and frustrating, specially when you don't get the results right away. But everything, every little thing we do for our kids is very important and helpful even though we don't see the results right away. Don't give up, I send you all the hugs and love MK. also this lady weillcornell.org/clord. She give me hope, She give a conference yesterday and it is amusing how much research she has done for kids on the spectrum and the videos of the kids that have been on the study are totally in universities studying and continuing with their lives. She show some videos from those boys from 18 months old to 9 years and 21 years old. That is an amazing job the she has done.

[zaraceligon]

www.med.nyu.edu/child-adolescent-psychiatry/research/institutes-and-programs/autism-spectrum-disorders-clinical-and-research-program/convo I leve this here, it may be interesting or helpful.

[chickypoo2468]

Feb 3, 2017 18:42:08 GMT -5 @clarypax said:

Feb 3, 2017 17:40:05 GMT -5 chickypoo2468 said:

Yeah and that's what I keep thinking. But then at our first visit our pulmonologist was like "you see all these doctors, but nothing is going to change" and I was like omg, am I overdoing it? Did I cross that line? But I don't want to miss anything that needs care to keep him safe and alive as much as I want an answer to why he is the way he is.

My first son had a milk protein intolerance in the form of really bad eczema. We had tons of appts and saw specialists and he just grew out of it. I still think back about how those appts changed nothing. But his skin reactions looked like allergic reactions and it could have been serious so I keep telling myself I had to do it. But O's life is so much more intense. I don't want to waste time on testing when I should be enjoying him. But really I'm not enjoying anything when I'm worrying. You guys know all about this though.

[

Also I don't think it's great bedside manner to say you see all these doctors but nothing is going to change. I mean it's possible he has something that can't be treated but it's possible that there are things they can treat- you know? I fired my ENT for not being supportive of his hearing aids. I mean there is virtually no drawback to hearing aids- they are non invasive and pretty much can only do good things (unless programmed terribly or something). So yeah I mean they need to be supportive.

Oddly enough he didn't seem unsupportive though. We had a couple other appts the following week and he added on bloodwork to theirs and mentioned a possible brain MRI that we ended up scheduling. Then he ordered the tests we were referred to him for. He was very tender with O and after he said nothing will change he said we will just manage things as they come. I felt more like he was being realistic and just laying it all out for me when everyone else is so vague.

[Deleted]

I meant in terms of going to more doctor appointments. It sounded like he said you shouldn't go to more doctor appointments but then scheduled you for more. Maybe the wording is just off, but I am glad he is helpful in his actions.

[chickypoo2468]

Feb 3, 2017 19:58:49 GMT -5 @clarypax said:

I meant in terms of going to more doctor appointments. It sounded like he said you shouldn't go to more doctor appointments but then scheduled you for more. Maybe the wording is just off, but I am glad he is helpful in his actions.

Yeah it was kind of weird, but maybe more like I went in there sounding like we could eventually find a doctor to fix him. Not that I want a doctor to piss on my dreams, but I would like them all to be upfront with me so I'm not so frustrated and feeling like such a failure. A lot of my stress and anger come from not being able to accept O for who he is, and as much as him saying that he is who he will be made me go home and cry, it also felt like a burden was lifted. Does that even make any sense?

[luvboston]

It makes sense. However your kid is 15 months not 10 so I'm not ready to call in his cards yet.
And for my kid hell will have frozen over when I accept that we are going to live this horror his whole life!

One thing our complex care doctor says often is that complicated cases are not fixed in days or weeks most of the time it's years until you get a true answer. But don't give up while you are waiting!

[URMySunshine77]

Although I'm new here, I just want to voice my support and encourage you to keep the appointment.

[mrsbuttinski]

Feb 3, 2017 15:50:00 GMT -5 chickypoo2468 said:

I'm sorry I have all the questions.

Ok so O has his first appt with the neuropsychologist at the end of March. It's a 3 appt process, the first is like just to meet everyone, the second is 3 hours of testing, the third is to go over the results.

The reason we have this appt is because in July we saw a neurogeneticist who mentioned autistic behaviors, and then we saw the developmental ped and I told them this and they referred him since it was a 6 month wait and we could always cancel later.

How old is O? Does he walk at this point? The essay zaraceligon posted, by Catherine Lord,  makes some points, but I do know families with very young children who have been dxd. I've heard as young as 16 to 18 months. I kind of disagree with some of what she said vis a vis kids on spectrum not being different from their peers at 12-18 months. People I know with kids who have even an Aspergers or HFA dx would disagree with her to a mom. My kid was really different in a lot of ways both subtle and obvious. There's a reason M-CHAT is times for 16-30 months. 

IME, having a child who didn't start ASD interventions until he was weeks away from 7, I don't know that he'd have had a better outcome starting at 3-4. I suspect he would have transitioned to kindie better but I suspect we'd be exactly where we are now anyway. 

I kind of wonder how old that interview is. Many of the double blind studies on secretin took place in the late 1990s and early 2000s. Hyperbaric oxygen isn't something I've heard talked about much on the crunchier forums in maybe 8-10 years. There was a local support group here who would rent a chamber periodically- something went awry and the doc who owned it had it confiscated which made the news about 10 years ago.

I ask about the walking because one of the best diagnostic tools for dxing ASD, which was written by Dr. Lord and her team, is ADOS and that requires a child to be walking. 

This was when we were finally realizing (I think the professionals knew but no one actually said it until the geneticist) that O had an intellectual disability and his issues stemmed from that, not that he was just a little behind because of his vision impairment. So it was kind of a whirlwind at the time. Sometimes I felt like he couldn't understand anything, other times I felt like you just had to learn how to get through to him in the way you needed him to. We watched videos and read things and thought we saw O in these other kids that had autism.


It can be hard to separate ID and ASD in terms of behaviors and symptoms. ID is a common comorbid to ASD. It's hard to get a hard number of the actual percentage of individuals who have ASD who have an IQ lower than 70. At the time DS was dxd, 2000, it was thought that around 3/4 of those with ASD also had ID. Broadening the ASD criteria has lowered the percentage, but historically many children who had both were only given the ID dx because the medical establishment felt adding ASD was needlessly cruel to the families. Some feel that these uncounted individuals who are now recognized comprise a significant part of the so called autism epidemic. 

Now O doesn't seem to do the things we were concerned about before, or else I'm just used to it and don't notice them. He's getting farther behind in all areas as time goes on and I feel like he's too babyish to assess for autism anyway. He does have the retained newborn reflexes and he did start babbling and then stop for a long time, but I'm sure that's not enough to go on. He makes noises now but I don't even know if I would call it babbling. There's definitely no meaningful sounds. He seems like he starts to learn something then backtracks all the time. He's still hard to interact with and there's no give and take. Maybe he's just mentally disabled and that's that.


I'm not sure if you posted those behaviors as a reason to opt out of the ASD eval, but they kind of support getting evaluated as the bolded are all red flags for ASD which is a developmental delay. 

So now I'm thinking I should cancel his appt. My husband said to just take him to rule it out, but 1. I'm the one doing all the appts and this sounds like an ordeal 2. I don't want to be the crazy mom insisting on unnecessary testing, and 3. I don't want to take a spot when there are so many other people waiting. Im all about early intervention but I feel like it would be like asking them to assess an infant. And we can always schedule again down the road.

But then there's that 6 month waitlist...

6 months now. It could be 12 months when you are ready to take that step. Meantime, things could get worse, especially if he has a regressive form of ASD. 

What would you do? Probably cancel right?

I'd keep it. If the neuropsych feels the testing would be better accomplished at a later date, s/he'll reschedule it for then. More information is always better if it can help you make decisions around parenting. It's very possible you will only get a tentative or "working" dx for now. But you might get some help with learning ways to engage him better. 

Good luck whatever you decide. 

[chickypoo2468]

Feb 3, 2017 21:51:48 GMT -5 luvboston said:

It makes sense. However your kid is 15 months not 10 so I'm not ready to call in his cards yet.
And for my kid hell will have frozen over when I accept that we are going to live this horror his whole life!

One thing our complex care doctor says often is that complicated cases are not fixed in days or weeks most of the time it's years until you get a true answer. But don't give up while you are waiting!

I'm not calling in his cards. But I'm not expecting him to one day just magically be "normal"

ETA that doesn't mean I'm giving up. But it allows me to look at alternate ways to get him going and try harder to help him.

[chickypoo2468]

Feb 4, 2017 5:31:59 GMT -5 mrsbuttinski said:

Feb 3, 2017 15:50:00 GMT -5 chickypoo2468 said:

I'm sorry I have all the questions.

Ok so O has his first appt with the neuropsychologist at the end of March. It's a 3 appt process, the first is like just to meet everyone, the second is 3 hours of testing, the third is to go over the results.

The reason we have this appt is because in July we saw a neurogeneticist who mentioned autistic behaviors, and then we saw the developmental ped and I told them this and they referred him since it was a 6 month wait and we could always cancel later.

How old is O? Does he walk at this point? The essay zaraceligon posted, by Catherine Lord,  makes some points, but I do know families with very young children who have been dxd. I've heard as young as 16 to 18 months. I kind of disagree with some of what she said vis a vis kids on spectrum not being different from their peers at 12-18 months. People I know with kids who have even an Aspergers or HFA dx would disagree with her to a mom. My kid was really different in a lot of ways both subtle and obvious. There's a reason M-CHAT is times for 16-30 months. 

IME, having a child who didn't start ASD interventions until he was weeks away from 7, I don't know that he'd have had a better outcome starting at 3-4. I suspect he would have transitioned to kindie better but I suspect we'd be exactly where we are now anyway. 

I kind of wonder how old that interview is. Many of the double blind studies on secretin took place in the late 1990s and early 2000s. Hyperbaric oxygen isn't something I've heard talked about much on the crunchier forums in maybe 8-10 years. There was a local support group here who would rent a chamber periodically- something went awry and the doc who owned it had it confiscated which made the news about 10 years ago.

I ask about the walking because one of the best diagnostic tools for dxing ASD, which was written by Dr. Lord and her team, is ADOS and that requires a child to be walking. 

This was when we were finally realizing (I think the professionals knew but no one actually said it until the geneticist) that O had an intellectual disability and his issues stemmed from that, not that he was just a little behind because of his vision impairment. So it was kind of a whirlwind at the time. Sometimes I felt like he couldn't understand anything, other times I felt like you just had to learn how to get through to him in the way you needed him to. We watched videos and read things and thought we saw O in these other kids that had autism.


It can be hard to separate ID and ASD in terms of behaviors and symptoms. ID is a common comorbid to ASD. It's hard to get a hard number of the actual percentage of individuals who have ASD who have an IQ lower than 70. At the time DS was dxd, 2000, it was thought that around 3/4 of those with ASD also had ID. Broadening the ASD criteria has lowered the percentage, but historically many children who had both were only given the ID dx because the medical establishment felt adding ASD was needlessly cruel to the families. Some feel that these uncounted individuals who are now recognized comprise a significant part of the so called autism epidemic. 

Now O doesn't seem to do the things we were concerned about before, or else I'm just used to it and don't notice them. He's getting farther behind in all areas as time goes on and I feel like he's too babyish to assess for autism anyway. He does have the retained newborn reflexes and he did start babbling and then stop for a long time, but I'm sure that's not enough to go on. He makes noises now but I don't even know if I would call it babbling. There's definitely no meaningful sounds. He seems like he starts to learn something then backtracks all the time. He's still hard to interact with and there's no give and take. Maybe he's just mentally disabled and that's that.


I'm not sure if you posted those behaviors as a reason to opt out of the ASD eval, but they kind of support getting evaluated as the bolded are all red flags for ASD which is a developmental delay. 

So now I'm thinking I should cancel his appt. My husband said to just take him to rule it out, but 1. I'm the one doing all the appts and this sounds like an ordeal 2. I don't want to be the crazy mom insisting on unnecessary testing, and 3. I don't want to take a spot when there are so many other people waiting. Im all about early intervention but I feel like it would be like asking them to assess an infant. And we can always schedule again down the road.

But then there's that 6 month waitlist...

6 months now. It could be 12 months when you are ready to take that step. Meantime, things could get worse, especially if he has a regressive form of ASD. 

What would you do? Probably cancel right?

I'd keep it. If the neuropsych feels the testing would be better accomplished at a later date, s/he'll reschedule it for then. More information is always better if it can help you make decisions around parenting. It's very possible you will only get a tentative or "working" dx for now. But you might get some help with learning ways to engage him better. 

Good luck whatever you decide. 

O is not walking or crawling and has gotten into sitting once. He still kind of topples sometimes when placed in sitting.

I think I had listed those reasons kind of as reasons to test, but then I feel like his delays might also make testing impossible.

Good point about the wait time changing. I'm definitely keeping the appt to at least have him as an established patient.

[Deleted]

I take back my statement then. Sometimes it is the doctors who tells you how it is, but also continue to do the most for your child that are the most helpful. I've had those that did not tell me what I wanted to hear but when it was time to actually deliver good news then I trusted them more because I knew they knew their stuff and would give it to me straight.

[chickypoo2468]

Feb 4, 2017 23:24:44 GMT -5 @clarypax said:

I take back my statement then. Sometimes it is the doctors who tells you how it is, but also continue to do the most for your child that are the most helpful. I've had those that did not tell me what I wanted to hear but when it was time to actually deliver good news then I trusted them more because I knew they knew their stuff and would give it to me straight.

My fault for pulling one sentence out. I appreciate all the feedback!