12 mo DS diagnosed in 15min? good or bad? | Autism PDD
I always ask questions and 1 Psychologist was horrible. This was last year and a total waste of my time. This was before I knew my family history anD what was going on. Anyways I explained some of the sensory stuff my daughter was doing, he had no idea and her repetitive behaviors. This guy was totally lost. The only thing he asked was does she here voices, what a joke. No!!!! I walked out with nonthing but a big bill and thank goodness tri-care covered it.
Of couse I didn't know it was sensory and until my aunt an OT in another state told me and my family history about SID and aspergers. That's when I took the pdd test and it is 156.
Anyways, I know in Sept which one she has either pdd or aspergers. She going to developmental pediatrician, he also works with childerns hosp. I also got my video cam. out too. catching her walking hands and toe walking.
The bottom line nonthing wrong with asking questions.
Sorry saddyinpa, I didn't mean to upset you. Your child may well be on the spectrum, it's just that admittedly 12 months old is very early to tell for sure and if the doctor can explain how your child differs from a typical 12 month old that would reassure others to know one way or the other.
I apologize if I too hastily poured my emotions onto this post in detail without thinking through the implications/complications of it all.Right now is a very tough time for me... I am sort of alone in all this, with friends and family making me feel that I am somewhat crazy and 'new mother frazzled' when I talk about my concerns over DS.
I am torn between 'letting it go' for a while and 'pretending' that DS is an average toddler and just being in the 'NT world' for a little while longer. It is almost easier than facing the realities.
When I pushed my DH to let me take my DS a month ago to a dev ped at our Childrens Hospital, he agreed but though I was overreacting. Because she didn't mention the word ASD and only said delays... he as well as the rest of my family, have been able to deny that anything else could be going on.
I know better and I also know that if I get more help/therapy for my son now, it may make a difference. I also need support in going through all this and cannot get it until we face whats possibly going on.
I am the one pushing for more and actually want a 'diagnosis' deep down. That is why I went to the Autism Center. I thought they either would tell me I was wrong or help me find out. Even then I was nervous to really hear what they would think... is it worse to get a confirmation of your worst fears or to have someone tell you your gut instinct is wrong???
That all being said, I need to say that The Autism Center was caring and seems to have a wonderful program/services in place. I did not mean to totally question anyone's skills or 'get them in trouble'.
Cindy, you should be proud of what you are doing with the Center and I am sure Dr. C is very qualified. I just didn't really like his style I guess. I also could have just caught him on a bad day. I will say that he seemed very rushed and looked at his cell phone about 5 times during our visit. He did seem preoccupied with other things. He really only did spend that 1 min engaging my DS directly... with only very little other questions. He gave a lot of credence to my notes and observations, which I should be thankful for. I never wanted to lodge any sort of complaint formally, it was just my opinion about it being so fast, rushed and sort of impersonal.
BUT... he may end up being the person in all of this that actually helps our family the most, because he was not afraid to give a diagnosis and help us get the ball rolling with PA's services. I do know that... I think it is just hard to take it all in.
I never knew that I had spoken to you on the phone previously, Cindy. In all honesty, I remember thinking that the person answering the phone was very personable and understanding! thank you.
thank you all for your thoughts and input... I know this is a long journey and I am just starting on it.
denise
Denise,
I just want to say that everyone here has been through what you are going through right now...Well the parents anyway. I think we can all validate your feelings regardless of what they may be. You have to feel it all so that you can get over that initial shock so that you may help your child. So for goodness sake....go cry...scream...or do what you need to do to get though this first phase of sadness. Just remember one thing through it all....Your child is the same child he was before you took him to this appt. Nothing has changed with him except YOUR perception. Now what you decide to do, with knowing what you know now, will make all the difference in the world for your son. Take care,
karrie
Autismlink, would you be able to explain how you were able to tell at such a young age? The thing is, is that a lot of 12 month olds don't point, don't pretend play, don't make eye contact if they're shy, don't have many words (so it's difficult to tell what are difficulties with social communication and what are just speech delays) and don't walk. Very few of those 12 month olds are not typical, babies all develop at different rates. I can just about understand you saying "well, it may be possible for x and y reasons, but we're not sure, come back in so many months to see" but a firm diagnosis at such a young age, when babies all develop at different rates, must be difficult.
Also, how were you able to distinguish in such a short space of time that the repetitive behaviours were above the normal rate for 12 month olds? Reiterating actions is very much a favourite activity for babies and young toddlers, we only have to think of the phrase "again again!" to be aware of this.
How were you able to determine that the 12 month old had an unusual skill set, with very high skills in some areas and very low skills in others?
How were you able to determine if the baby had any sensory issues that went beyond those experienced by typical babies and yougn toddlers. Eg my NT son used to be terrified of the vacuum cleaner, really distressed. Now he's fine with it. His distress only lasted a few months.
I really don't mean to have a go and I'm sure you offer a lot of help to parents. But if I'm being honest I'd say that to give a definite diagnosis to a baby, rather than just saying "maybe, it's possible" means there'd have to be some definite signs. And I know this will prove an unpopular view, but I don't agree with giving a child an autism diagnosis "just in case" and then if the child does develop in a typical way, leaving the parents wondering if the child was ever autistic. So if you were able to explain what the signs were that led the doctor to declare a diagnosis was definite, I think it would be vey helpful to parents of very young children.
I personally know Cindy and her organization. They are First Class with regards to the feelings of parents and their children.She is a virtual dynamo in the Autistic parents community, and her intentions are only to help people get the services that they need. The MA card is necessary to even begin any form of intervention in PA, so even if the child was not as accurately assessed as possible, the "Red Flags" indicate that the beginning steps must be taken. The time factor is most impoprtant here.
Good Luck with your childs future. I am sure that you want the best and most comprehensive help for your child, and Cindy's organization is a group of parents and professionals who have been down this road ahead of you and only want to help you.His bedside manner could use some help, to say the least. And, I
understand your frustration (trust me, I'd be upset too!!). Part of your
emotion can also be just hearing that your child has PDD. Even if we
think it, or know it deep down inside, hearing those words uttered, it's a
lot to take in. I've thought from time to time, our docs must be wrong.
It's all part of many, many emotions we as parents go through. The
*good* thing is that your son is VERY young, and he will now be able to
get more services (great program they have in PA, btw, never heard of
that!). We began w/ EI & private services when dd was 8-9 mos old, and I
know that's helped her in so many ways.
I do agree w/ tzoya 100%...docs pick up on subleties that we laypersons
simply cannot. Also, in the case of me & my dd, I tend to overlook things
or because she has been this way all her life or for so long, I don't think
of them as red flags, but simply personality. Trust me, there are days
where I have 0 doubt that she is on the spectrum, but sometimes we do
get lost in where our child truly is. My dh says it's possible b/c I'm w/ dd
so much, that it's like when you are standing too close to a wall, you
probably won't see any faults in it (no curving, bowing, cracks, paint
mistakes, etc.). Hope that makes sense, it did to me!!
Back to tzoya...we saw THE expert on mito disorders a week after dd
turned 2. This expert on mito spoke to us at length, & the majority of
diseases he was looking for in our dd had autistic-like symptoms and/or
the children had autism as a secondary feature. He told us, after not
really doing anything more than a quick medical exam on our dd, that she
defenitely had "autistic features," but that he was not specialized in that
field. STILL, he knew enough to pick up on them, AND he was the first
doc to even utter those words. Fast forward a year, and we have an
official diagnosis. So, it could just be that you found the right person (not
so great personality) the first time around.
I would keep the dev ped appt & see how that goes. Best of luck.
WELCOME!!! I have no idea, I will ask the Psychologist. I'm the Director of the Center, not a psychologist. I'm a parent, just like you.I usually tell parents 12 months of age is too young. For whatever reason, our psychologist (a PhD with 25 years of experience) decided to diagnose this child.
I'm not qualified to second guess him. Are you? I will ask, though.
My job at the Center is to make sure parents are treated well, that they have the support that they need, to inform them of where and how to get services, etc.
Cindy
[QUOTE=AutismLink]
I'm not qualified to second guess him. Are you? I will ask, though.
Cindy
[/QUOTE]
I don't think it's necessary to be "qualified" to second guess ANY doctor. Gone are the days of us putting them up on some high platform and just ignoring our guts. I think Bullet raises good questions...and why not question?? Does it not make it possible for learning more? Thank GOD I second guessed the opinions of not one.....but 2 proffesionals because he may not have gotten what he needed....A diagnosis AND treatment.
Karrie
I never said don't second guess. I said I'm not qualified to second guess him on a diagnosis that he made when I wasn't even present. Especially since I know him well and he has 25 years of experience and a degree that I don't have.Even if I was present, I'm not qualified to make a diagnosis. I can guess..... and I'm pretty good at picking it out by now seeing as how I have two children with autism.
Everyone should question everything. I wasn't making a blanket statement, I said "I AM NOT QUALIFIED" and I'm not.
Cindy
Sorry, I thought you would know. I'll have to start reading posts properly
Hey, believe me, I wish I *was* qualified. I'm actually going back to school in the spring to get a masters in professional counseling and then hopefully a PhD, so I can diagnose.
I"m old and tired, though, so I guess we'll see. LOL.
Cindy
I feel I need to add one more comment... then I promise I will be done!
I hope that more parents out there get earlier help and assistance( and diagnoses) for their children with ASD. I certainly hope that comments or concerns like mine would not cause a physician to hesitate to give a diagnosis at such a young age... I do feel that it is going to benefit children in the long term if We could get them help sooner.
Again, I think I probably needed a little more empathy and explanation at the appt yesterday... mostly because I am just too darned overwhelmed right now. And, it is not the center's responsibility to get me through this.. so I will probably end up wishing I hadn't posted the original message as quickly as I did. But right now I am not in 'control'. Thanks again.
Denise
Very well said Elle 22Not to play moderator here OR stir up anything...but...
AutismLink, I think it may have been a better approach to email Denise
instead of publicly posting like you did. It's, in a way, a breach. Parents
come here because they feel it is anonymous (as much as we want it to
be), and that we can freely discuss things w/o being criticized.
ESPECIALLY without being debated by the very people we may be
discussing. I in no way felt like she was speaking badly about your
center, and if you read our replies, many of us assured her a dx so
quickly is possible, with true experts in the field. Your center sounds
amazing, and it looks like you have some great docs there. Kudso to you!
Personally, I would die if one of my dd's doctors, therapists, or someone
from her SD replied to one of my posts. If the emailed or contacted me, &
my post became a stepping stone toward resolving an issue, that would
be one thing. But, to be confronted here, in front of everyone, in a safe
place, that is not fair. This mom, like everyone else here, came for
support, advice, & comradery. You are a parent of children w/ autism,
and you know how challenging that can be. I know that when my dd was
12 mos old, things were wrong. She already had 3 diagnoses, was in
therapy, & followed by a neuro et al. We knew there were neuro issues &
health problems...that aside, I (as a mom) also knew my dd acted very
different than other children. For lack of better words, she was on one
hand high-maintenance (sensory issues, screaming, etc.) & on the other,
oblivious & in her own world. I felt a range of emotions, mostly the fear
that comes from uncertainty. I was so scared of what the future might
bring.
Think of where you were when you began the process of diagnosis, or
first suspected something was up with your children. It's a crazy time.
Then, think of when you were first given that diagnosis. I know my world
was spinning for some time. I had questions, I was scared, I felt
alone...but thank God, I had this forum. I had parents who GOT it. I
wasn't judged or criticized. I was cheered on, empathized, and felt
support like I can get nowhere else.
No hard feelings, I just felt that something had to be said. This mom is
new to our forum, and I want her to feel just as safe & welcome as the
rest of us. I want her to come here, have this support system & group of
friends I don't ever want her, or anyone else here, to feel like we can't
vent or question about the professionals we come in contact with. karjab30 is right. At least you child got the right help and he's young. Other parents have to find the right Dr..
[QUOTE=Elle22]Not to play moderator here OR stir up anything...but...
AutismLink, I think it may have been a better approach to email Denise
instead of publicly posting like you did. It's, in a way, a breach. Parents
come here because they feel it is anonymous (as much as we want it to
be), and that we can freely discuss things w/o being criticized.
ESPECIALLY without being debated by the very people we may be
discussing. I in no way felt like she was speaking badly about your
center, and if you read our replies, many of us assured her a dx so
quickly is possible, with true experts in the field. Your center sounds
amazing, and it looks like you have some great docs there. Kudso to you!
Personally, I would die if one of my dd's doctors, therapists, or someone
from her SD replied to one of my posts. If the emailed or contacted me, &
my post became a stepping stone toward resolving an issue, that would
be one thing. But, to be confronted here, in front of everyone, in a safe
place, that is not fair. This mom, like everyone else here, came for
support, advice, & comradery. You are a parent of children w/ autism,
and you know how challenging that can be. I know that when my dd was
12 mos old, things were wrong. She already had 3 diagnoses, was in
therapy, & followed by a neuro et al. We knew there were neuro issues &
health problems...that aside, I (as a mom) also knew my dd acted very
different than other children. For lack of better words, she was on one
hand high-maintenance (sensory issues, screaming, etc.) & on the other,
oblivious & in her own world. I felt a range of emotions, mostly the fear
that comes from uncertainty. I was so scared of what the future might
bring.
Think of where you were when you began the process of diagnosis, or
first suspected something was up with your children. It's a crazy time.
Then, think of when you were first given that diagnosis. I know my world
was spinning for some time. I had questions, I was scared, I felt
alone...but thank God, I had this forum. I had parents who GOT it. I
wasn't judged or criticized. I was cheered on, empathized, and felt
support like I can get nowhere else.
No hard feelings, I just felt that something had to be said. This mom is
new to our forum, and I want her to feel just as safe & welcome as the
rest of us. I want her to come here, have this support system & group of
friends I don't ever want her, or anyone else here, to feel like we can't
vent or question about the professionals we come in contact with. [/QUOTE]
Honestly I feel the exact same way but I didnt' know how to word it...Thanks.
karrie
Well said Elle22.I'm
Karrie
Also -- I'm glad you posted. If you need help, we're here to help you. CALL ME. I'll be happy to walk you through what you need to do. Believe me, I"ve been there and done that....I know exactly how you feel.
Cindy
"Your child is the same child he was before you took him to this appt. Nothing has changed with him except YOUR perception. "
This is probably the single most important thing anyone said to me after diagnosis.
Cindy
Do you seriously believe that anything you put on a public forum is private? I just wanted to (a) make sure she wasn't treated badly, and (b) defend the Center's reputation. Our Center was mentioned by name, and I had every right to address it.
Nobody criticized anyone. My main concern was that she was treated fairly. There is absolutely nothing wrong with that.
I'll reiterate my offer to have the original poster call us for help. My family told me I was crazy when i thought my first son had autism. It's a difficult time.
Vent away.....
Cindy
AutismLink, I think it may have been a better approach to email Denise
instead of publicly posting like you did. It's, in a way, a breach. Parents
come here because they feel it is anonymous (as much as we want it to
be), and that we can freely discuss things w/o being criticized.
ESPECIALLY without being debated by the very people we may be
discussing. I in no way felt like she was speaking badly about your
center, and if you read our replies, many of us assured her a dx so
quickly is possible, with true experts in the field. Your center sounds
amazing, and it looks like you have some great docs there. Kudso to you!
Personally, I would die if one of my dd's doctors, therapists, or someone
from her SD replied to one of my posts. If the emailed or contacted me, &
my post became a stepping stone toward resolving an issue, that would
be one thing. But, to be confronted here, in front of everyone, in a safe
place, that is not fair. This mom, like everyone else here, came for
support, advice, & comradery. You are a parent of children w/ autism,
and you know how challenging that can be. I know that when my dd was
12 mos old, things were wrong. She already had 3 diagnoses, was in
therapy, & followed by a neuro et al. We knew there were neuro issues &
health problems...that aside, I (as a mom) also knew my dd acted very
different than other children. For lack of better words, she was on one
hand high-maintenance (sensory issues, screaming, etc.) & on the other,
oblivious & in her own world. I felt a range of emotions, mostly the fear
that comes from uncertainty. I was so scared of what the future might
bring.
Think of where you were when you began the process of diagnosis, or
first suspected something was up with your children. It's a crazy time.
Then, think of when you were first given that diagnosis. I know my world
was spinning for some time. I had questions, I was scared, I felt
alone...but thank God, I had this forum. I had parents who GOT it. I
wasn't judged or criticized. I was cheered on, empathized, and felt
support like I can get nowhere else.
No hard feelings, I just felt that something had to be said. This mom is
new to our forum, and I want her to feel just as safe & welcome as the
rest of us. I want her to come here, have this support system & group of
friends I don't ever want her, or anyone else here, to feel like we can't
vent or question about the professionals we come in contact with. [/QUOTE]
Denise,
If I had been on this board when I had an incident with our dev. ped. I would have posted about it. I certainly talked to evryone else about it, wrote a letter and even received a personal call. My doctor said she was glad I said something as it is her role to always try to do better.
.[QUOTE=AutismLink]Do you seriously believe that anything you put on a public forum is private? I just wanted to (a) make sure she wasn't treated badly, and (b) defend the Center's reputation. Our Center was mentioned by name, and I had every right to address it.
[/QUOTE][/QUOTE]
What the poster meant was that you could have Private messaged her, here on this forum instead of posting publicly to (a) make sure she wasn't treated badly or (b) defend your center's reputation... (your centers reputation was not what this thread was about and finding out if she was treated properly would have been best handled by private message)
karrie
edited to add that I agree with the poster above me also.
Whatever!
I'm very well aware of HIPAA, thank you. Nobody mentioned her name. Nobody knows who she is. Her problem was solved. Enough said.
Anyone else feel like beating a dead horse?
Saddyinpa - I am GLAD you posted that first post - dont ever regret it - this ois a forum for you to feel supported in - I dont know what I would have done if I did not have this group to help me deal with things
Cindy I can tell - you are warm and obvisouly have very good intentions- but this is primarily a forum for Parents of Autistic Kids and we need to vent sometimes without feeling like we are directly talking to the ventees - ( bad grammar - sorry ) -
Saddyinpa is new here and I would really like it to feel safe here for here
Stay around autismlink, I'm sure you can offer lots of help and advice :).
I will say that I have nothing against parents being given help for their children if they need it. None whatsoever. My only reservation was with a serious diagnosis like autism being given very early, rather than a "it might be". I think a child can be given help, eg speech therapy, occupational therapy, if they need it even if a diagnosis is unclear. It's just my opinion though and it probably comes from my living in the UK where it's very unusual to diagnose before the age of two.
Cindy...
We all read the part where you have children on the spectrum but you also are representing the center that the original poster was complaining about. You even admitted that the first post in response to her was also to defend the reputation of the center. How could you possibly play both the person defending the center you work for and also the caring parent of children with Autism. If you go back and read the whole thread again and really look at the way your words are written and just think about if you were the original poster comming here to vent and then someone shows up from the center you were just talking about and completely turns around the whole thread. I have been a member here for over 2 years and some of us are just protective of others here. Just like you are protecting your center by defending it as you said. Honestly this is a VERY caring group of people and if you were to stay I think you would see that. No one here is angry at you....we just are giving our opinions. You seem very aggitated by your last post and for that I appoligize If I had anything to do with that. I still think you should have contacted her privately though...even by phone and could have just did a follow up and asked her what she thought of your center etc. She didn't even have to ever know that you were here. You could have joined under the pretense that you are a mother of 2 children on the spectrum instead of the director of a center that was worried about her centers reputation. That way we would REALLY get to know you and your children. I mean...that's what this board is for isn't it??
Karrie
"Perhaps you missed the part where I said I have two children with autism"
Yes I did miss that - sorry about that
But I do still feel you could have adressed it better - if you had send an email to her directly instead of giving the center's perspective- this is not private forum obvisouly but we do gain a certain sense of safety in the anonymity. If that is violated - this place will feel less safe
I agree with elle. There is something very shaming about your tone,autismlink. While I understand your need to defend your clinic, it could
have been done in a more respectful and private way.
I felt very uncomfortable when I read your post, something that doesn't
happen very often on this board. I feel it could have been handled
privately, with a follow-up post about how the issues were resolved. It
would have been much more professional and caring.
I have a much worse impression of your clinic by the way you handled this
incident than I did from the original poster.
This is not about your clinic. It's about a mother who came here for
support and ended up being taken to task for it by you.
I do not think that the 'public' nature of an online forum is a justification
for how you chose to handle the situaton. We are a very supportive and
caring group of parents. I am saddened to think that anyone would be
made to feel publicly embarrassed here. Feelings come first. Rules of
respecting people's privacy and feelings still apply on a board like this.
Okay everyone. I'm sorry. Could've handled it better. Can I come down from the cross now?
[QUOTE=AutismLink]Okay everyone. I'm sorry. Could've handled it better. Can I come down from the cross now? [/QUOTE]
Totally !! -
Karrie
You know, I was angry for YEARS when a speech pathologist I took our son to at age 2 did the very same thing. I spent way too much time trying to prove him wrong. His manner of telling me our son had PDD-NOS (back in 1993) was wrong, but his conclusion was right. I know now what I didn't know then. That, for those who are very familiar with the red flags, it's way too easy to see autism in a brief observation. It's often so obvious. Of course, most doctors are cautious and take lots of time to observe and document, but I can tell you that ANY expert can tell nearly immediately, just from looking. At least that the tendency is there. Sometimes other disabilities -- like deafness and mental retardation -- can look like autism in a young child, but the sorts of traits that are seen in young children that lead the experts to say autism are, at the very least, indications of disordered development and are bad signs. My son is 16.5 years old. I got my first "diagnosis" when he was 2 years and a couple of months. In all these years since, I have not seen any children who were diagnosed quickly turn out to not have some form of autism. The red flags are that accurate. Yes, most experts spend more time observing, but I can tell you that they ALL know nearly immediately. But a DX is permanent, so they don't want to give it immediately in all cases. The silver lining to getting the dx quickly is that the child's disability can be addressed properly IMMEDIATELY. Autism educational techniques, particluarly ABA or any intervention derived from ABA, are the best way to deal with the symptoms and reduce their negative impact on your child's life. You are right that 12 months is young, but there is no downside with assuming autism and getting your child treated immediately for it. There is a HUGE downside to not assuming autism and not getting the proper intervenitions as soon as possible. Consider yourselves lucky in a way.Our neurologist knew in our ds's first visit at the age of 9 months. I was too tired or didn't want to notice. She didn't say anything until he was 20 months but he was getting the services he needed anyway. We are still working through his diagnosis.
I wish she had told me right away.
I am sorry that you were unhappy with your visit. I wish you would have come to me with your concerns because they would have been addressed immediately. Dr. C. is actually extremely compassionate. Our Center is operated by parents of children with autism. I personally have 2. The reason that we opened is because of the cold nature of larger facilities. so we give a warmer, more personal experience.
I can also guarantee you that Dr. C spent more than 15 minutes with your child because I was there. If he kept looking at his cell phone when he was with you, I will talk to him about that. Dr. C has been diagnosing autism for 25 years. My guess is that if he even suspected your child had autism spectrum disorder, he probably gave the diagnosis so that you can get services started right away instead of having to wait. We have no wait at our facility -- other facilities have up to a six month wait. Early intervention is key. The reason our facility opened was also to give parents a change to get a faster diagnosis to get services started sooner. I personally had to wait seven months for a diagnosis for my first child.
I know how it feels to get the diagnosis (twice), and many times you feel hatred or blame toward the diagnostician. We hand picked our psychologists for their compassionate behavior toward parents. I've had to ask two to leave because I didn't like the way they treated families, so believe me, I am *EXTREMELY* sensitive about this. (Almost in an OCD kind of way.)
I do not feel that you were treated poorly in any way, but if you are unhappy, I would welcome a call from you.
Cindy W.
Diagnosing so quickly and informally seems strange, but I guess I have mixed feelings. Here are my thoughts:
- I'm glad he didn't treat you as just another nervous mother and dismiss your concerns in 15 minutes, which is much more common.
- Has your child been given a proper hearing test? Hearing (and vision) problems can lead to developmental delays and need to be ruled out.
- In a recent Newsweek article, an autism specialist with years of diagnostic experience said she had to retrain her eyes to detect autism at age 14 months. She was only able to diagnose half of the kids in the study so early. Maybe just the most severe cases? Here's the link for anyone that's interested: http://www.msnbc.msn.com/id/19588967/site/newsweek/page/0/
- When you had that many concerns about a 12 month old, the doctor probably realized that this was a rather unusual child.
- I feel like I can spot a non-NT child almost immediately, though I've never had suspicions about a baby (not even my own!). Thinking back on the local and then regional specialists who evaluated my son before his diagnosis at age 7, I wish they hadn't held their cards so tight to their chests, and instead given me a clue as to what they might have suspected. Because of waiting lists, a year passed between our first local consult and our first regional consult -- a year that I could have used more productively if I had known what they suspected.
- It's nice that the doctor told you something about how to get services. A lot of doctors are clueless about this.
Good luck with everything.
Oh, and by the way, we also have support groups and assistance if you need it. If you need help getting MA or starting services or finding out which wrap provider to use, please call us.That's what we're there for.
We also do outpatient OT and Speech (two of our therapists have kids with autism), and social skills groups.
Seriously -- if you're unhappy I would like to hear about it. If you were treated badly, I will address that immediately with the psychologist. (I'll run over his cell phone.)
:-)
Cindy
Hi All-
I guess I am sort of angry and worried as to what happened when I took my 12 mo old DS to a Autism Center and met with their Psychologist yesterday.
He diagnosed him with PDD after about 15 min of talking and almost no observation!!
Now, I have been to one other doctor for an evaluation, a developmental ped who said she saw developmental delays in DS but wanted to do some medical testing and follow up appt in 3 mos. She made no attempt at a diagnosis. I wasn't surprised, because DS is so young and also doesn't seem to have severe or classical autistic traits or red flags.
Soo... I had already made this appt and decided to keep it. I actually was prepared to 'argue' my case that something was different about my DS and thought they would probably tell me to go home and not too worry yet.
I had about 4 pages of notes of things that may be a concern or things to mention that I have been journaling for the past 3 months.
The dr took us into an observation room and while my DS crawled around and played.. he took my general info( I easily could have filled out my address and phone number while in the waiting room- uggh!) and then quickly asked me what 2 or 3 conerns I had. I actually had to tell him that there was a 'myriad' of things going on, not just 1 or 2 things. Then I mentioned my notes and he asked if he could just read them. He did in about 2 min and then quickly got on the floor with my DS and played with him for 60 sec- no exaggeration!
After this, he asked if if I understood how the system in Pennsylvania worked, how to get a Medical Assistance Card. I had researched this some and knew that one needed an MA card in order to get what PA calls Wraparound Services. Wraparound basically entitles you to a Coordinator type person who is Masters prepared and sort of manages your child's therapies. It is great that PA has this and I know it is one step more than what I am doing now with EI( 2.5 hrs of therapy a week).
I was actually shocked that he mentioned this because I knew one had to have a diagnosis for the MA status. When I said this, he said 'I am going to diagnosis him today'. He then gave me a clipboard with paperwork on it and left the room with my insurance card. The paperwork included the CHAR(?) questionaire and HPIAA releases. I was to quicky answer the questions about my DS's behavior and give it back. He did not look at it.
He then told me he was diganosing my son with PDD and here was a folder explaining how to get the MA status.
He then looked at his cell phone about 4 times( had already done this 3 or 4 times during our appt) and told me he would be mailing me more info soon.
I was shocked.
I mean, I guess I wanted help, but this seemed so rash and unprofessional. Now I am torn because I have a diagnosis...which helps me get more services for my son... but I am not sure he was really evaluated.
I am sorry this was so long, I guess I just needed to 'talk it out'.
Should I just let it go and be happy that I have a diagnosis which will most likely entitle me to more therapy for my DS????
I am due to go back to the original dev ped in 2 months, so I will also plan on keeping that appt.
Feeling sad about reality and questioning our society,
d in PA
I would be feeling very very frustrated as well - the doc sounds like he could not wait to get on tohis next appointment - SHame on him and wow he does seem to have made up his mind wayyyyyyyyy too fast
the bright side ( and it svery bright ) though is that you are soooooo ahead of all of us on the curve of starting services so ealry kudos to you !!!Early Intervention is key and its also a load of fun
I wish I had started earlier
I don't know about his proffessionalism, probably not the best etiquette. I can tell you something about my experience though, the doctor that evaluated my son told me she knew the minute he walk in the door that he was in the spectrum. At the time of the evaluation my son was so fascinated with numbers, He would carry a piece of paper around with him with numbers on it. He would look at anyone or talk to anyone, just look down at his piece of paper.
I think there are certain characterisics that are unmistakable and usually tend to be a big red flag for professionals.
If you are unhappy or unsatisfied with the evaluation there are tons of rescources you can find right here on this board ......good luckIt is extremely worrying that the first doctor saw fit to try and diagnose after so short a time. An autism diagnosis is not something to be given lightly. There needs to be detailed observations and questions asked and 12 months is extremely young. When my ds1 was referred to the paediatrician who in turn referred him to the multidisciplinary assessment, she told us after about 30 minutes she thought he was on the spectrum but she did say that she couldn't diagnose and that further examination was necessary. My son was two and a half at the time.Not to get into this debate because I really wouldn't know either way, but I did want to comment that if this doctor really can tell at 15 months, I really wish I could get Nina into see him.
Well as a matter of fact, yes I do.
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[QUOTE=karjab30]
Autismlink....You have no idea how many people frequent this board do you? Or who?
Karrie
[/QUOTE]I thought it was over too until I saw YET ANOTHER finger-wagging-hand-on-hip chastising post.
As far as calling the Center to find out who is posting.... I signed my name and my title. Hello? Oy.
I've been in the autism community for many, many years, and I truly don't need this treatment. AutismLink has one of the most comprehensive websites on autism, we give grants to autism organizations, we take kids all over the place, free of charge, to promote community inclusion. Go take a look at our website http://www.autismlink.com and see what we've done.
We also have a database of providers where you can simply put in your zip code and find providers within a 10-80 mile radius of where you live.
We've been in the New York Times, Animal Planet (there's a segment on the front page of the website toward the bottom) and all over newspapers nationwide. We also have a nationwide news listserv, free of charge, that delivers news on research, etc. to your email every day.
Yes, I'm truly an awful, horrible, scum-of-the-earth person. I've dedicated every waking hour to helping people, with no salary, mind you.
Why I'm trying to justify this to you is beyond me, but.... there you go. I've been at the "support" game for many years. That's why I founded the Center. That's why I founded AutismLink.
So to those of you wagging your fingers, just wanted you to know who you're wagging your finger at.
Oh, you might also want to check out our radio shows too with guests like Temple Grandin, David Kirby.... and a plethora of others.
Now can we stop beating this dead horse? I'm not the one bringing up the issue.
CINDY (yes, I signed my name.)
[QUOTE=Elle22]Wow...not really sure where to go with this. Earlier, I was about to write a
"Phew, glad all this has blown over! Welcome!" & then opened this up to
see your most recent reply (AutismLink). I am really astounded, it
seemed to me the whole issue was done & over with. You were welcomed
w/ open arms.
Still, you continue to dig up this issue. I'm not sure if you are having a
bad day, trust me, we can all relate if that's the case. However, it's unfair
for you continue with all the negativity. No one here has a "superior
attitude," & I'm sorry this is how you are perceiving things. We are simply
a group of people, all here for support--to share successes, stresses, and
even to have some fun.
If you are here as a parent seeking that same support & warm experience,
then we all extend our hands to you.[/QUOTE]Can we now commence the support and fun part?
well, I certainly didn't intend to make this post so long or complicated.
I will say that I never mentioned the clinic's name, specific location or any doc names in the original post. I intended for the post to be about the possibility of diagnosing a 12 mo old and if anyone had an opinion. My appt did go pretty much the way I described it, although the center itself is a great resource and the director should be proud that she has been able to put it together.
I was surprised that the director of the center spoke to me through this forum 'publicly', but I do understand that she probably felt compelled because She recognized that it was an appt that took place at her center. (Although no one else knew this until it was brought up).
I think that our family will continue to work with this center, and also go for a second opinion. I am grateful that this Dr has a sense of urgency when it comes to getting treatment started for kids who are on the spectrum... and it will most likely get us some extra help. For that I am thankful.
I did not like this particular dr's style and definitely felt rushed and confused when I left. But there are probably others who really like this doctor. But, I am a big girl and could have called the center if I had more questions.. or wanted to lodge a complaint. I dont. I may not go back to this particular doctor, but feel that the center offers great services.
Let's leave it at this? I should have probably made the original post more general with a little less emotion... and Autismlink could have contacted me privately if she had wanted to comment or check on things.
I appreciate all the help and it is a tough topic...I will back on these boards for support again soon! I hope AutismLink stays as well!
thank you,
SaddyinPA
Denise
Your daughter is beautiful. Look at those eyes!!!!!
AutismLink has a following down under from a group called Autism Solutions, Inc. Are you familiar with them?
Can you not get a diagnosis quickly??? How are services there?
Cindy
[QUOTE=Allegra]Not to get into this debate because I really wouldn't know either way, but I did want to comment that if this doctor really can tell at 15 months, I really wish I could get Nina into see him. [/QUOTE]Perhaps the best thing would be for saddyinpa to phone the centre and ask to speak to the woman putting these posts up.
Autismlink....You have no idea how many people frequent this board do you? Or who?
Karrie
Wow...not really sure where to go with this. Earlier, I was about to write a"Phew, glad all this has blown over! Welcome!" & then opened this up to
see your most recent reply (AutismLink). I am really astounded, it
seemed to me the whole issue was done & over with. You were welcomed
w/ open arms.
Still, you continue to dig up this issue. I'm not sure if you are having a
bad day, trust me, we can all relate if that's the case. However, it's unfair
for you continue with all the negativity. No one here has a "superior
attitude," & I'm sorry this is how you are perceiving things. We are simply
a group of people, all here for support--to share successes, stresses, and
even to have some fun.
If you are here as a parent seeking that same support & warm experience,
then we all extend our hands to you.Hmmm...missed this interesting interchange. I'm glad that the subject of both fast diagnosis and early diagnosis was aired, though. It's a fine line -- lots of kids at 12 months vary from typical development without ending up having an actual disability. However, we all know how important it is to get early intervention -- the earlier the better. Also, every human being can have a bad day, including diagnositicians, administrators and us moms. I'm glad there is a clinic that is trying to both diagnose accurately and early and ALSO trying to be sensitive to us parents. It's a very hard line to walk. Welcome, Autismlink. Please stick around. Again with the superior attitude. Oh if we could all be perfect like you, perhaps. Nobody was "taken to task."
I guess if you have a bad impression of our clinic, I only care if you're in Pittsburgh.
[QUOTE=MamaKat]I agree with elle. There is something very shaming about your tone,
autismlink. While I understand your need to defend your clinic, it could
have been done in a more respectful and private way.
I felt very uncomfortable when I read your post, something that doesn't
happen very often on this board. I feel it could have been handled
privately, with a follow-up post about how the issues were resolved. It
would have been much more professional and caring.
I have a much worse impression of your clinic by the way you handled this
incident than I did from the original poster.
This is not about your clinic. It's about a mother who came here for
support and ended up being taken to task for it by you.
I do not think that the 'public' nature of an online forum is a justification
for how you chose to handle the situaton. We are a very supportive and
caring group of parents. I am saddened to think that anyone would be
made to feel publicly embarrassed here. Feelings come first. Rules of
respecting people's privacy and feelings still apply on a board like this.
[/QUOTE]Ventee? Perhaps you missed the part where I said I have two children with autism. I'm not defending the psychologist, I'm making sure she was treated fairly. (I think I've typed this about 300 times now)
Saddyinpa: if you want help locally, come to our local yahoo group. There are 500 people on the board -- full of parents to help:
http://health.groups.yahoo.com/group/pittsburgh_autism/join
There, we can help you with wraparound, MA, etc. -- whatever you need, really. It's LOCAL to you.
I'll be leaving this group. Much too full of superior attitudes.
.....
Yes, as I said in retrospect I probably should have contacted you privately. Oh well.... pobody's nerfect. All I can do is say "sorry" and move on? I don't know what else to do.We have other doctors if you don't like him. Also, I would suggest that you make an appointment with Children's Hospital Child Development Unit -- it takes six months to get in, but your son will be a little older then, and they can do a more thorough evaluation including genetic testing, etc.
It can't hurt to have a second opinion. I would get it from Children's. He is awfully young.
Do you have services through the Alliance for Infants and Toddlers? It's the birth to three program in our county. If not, call me on Monday and I'll give you the information. They'll provide speech, OT and developmental therapy in your home.
Also -- I have more information for you on other things. You're eligible for WIC, and for the MA Transportation program where the state will reimburse you for driving your child to and from appointments, etc.
Happy to help,
Cindy
[QUOTE=saddyinpa]well, I certainly didn't intend to make this post so long or complicated.
I will say that I never mentioned the clinic's name, specific location or any doc names in the original post. I intended for the post to be about the possibility of diagnosing a 12 mo old and if anyone had an opinion. My appt did go pretty much the way I described it, although the center itself is a great resource and the director should be proud that she has been able to put it together.
I was surprised that the director of the center spoke to me through this forum 'publicly', but I do understand that she probably felt compelled because She recognized that it was an appt that took place at her center. (Although no one else knew this until it was brought up).
I think that our family will continue to work with this center, and also go for a second opinion. I am grateful that this Dr has a sense of urgency when it comes to getting treatment started for kids who are on the spectrum... and it will most likely get us some extra help. For that I am thankful.
I did not like this particular dr's style and definitely felt rushed and confused when I left. But there are probably others who really like this doctor. But, I am a big girl and could have called the center if I had more questions.. or wanted to lodge a complaint. I dont. I may not go back to this particular doctor, but feel that the center offers great services.
Let's leave it at this? I should have probably made the original post more general with a little less emotion... and Autismlink could have contacted me privately if she had wanted to comment or check on things.
I appreciate all the help and it is a tough topic...I will back on these boards for support again soon! I hope AutismLink stays as well!
thank you,
SaddyinPA
Denise
[/QUOTE]I dont think I have posted on this forum in almost 2 years, however I feel compelled to comment on this subject. I have some (limited) knowledge of the privacy and ethical issues regarding information received in a health care setting, though I am no attorney, nor do I play one on the computer.
I did review some sites for the basic AMA ethics codes, and the psychological codes (which are even stricter than the AMA) and I will share the links here, in case anyone needs to review them.
http://www.continuingedcourses.net/active/courses/course032. php?PHPSESSID=4461064bf9ecc43ddaba547b0657fd81
http://www.ama-assn.org/ama1/pub/upload/mm/369/ceja_4a05.pdf
http://www.drozur.com/ethicsofconfidentiality.html
Of course we know there are many more sites if you care to see them, and each state will have its own regs and boards. Each clinical setting will have its own policys and procedures. I recommend that the clinical director of this program consult with her governing body, and / or the companys attorneys to review privacy and confidentiality. While you did not use names, I fear that if you did not cross the line in your post, you certainly were almost there. I was really, really concerned when you posted the reason why the Psychologist kept playing with his phone, that leads me to assume that you told him of your communication with this mother and he did not feel the need to remind you of privacy and ethical considerations? Again, it would have been very different if this had not been done on a public forum (IMHO). As you said, what is online (unless a private group) is public domain, so why would you choose that forum to chastise this mother? You said that you KNEW that the Dr spent more than 15 minutes, because you were there, then that whole visit was to be held in confidence by you, not posted on the internet.
IMHO this mother is feeling lost and needs support, encouragment and help, may I ask why she wasnt referred to a LCSW or family therapist? Why she wasnt allowed to go through her list of concerns (You know we are encouraged to document our concerns). Your clinic may be the best thing since sliced bread and toasters, I'm not saying it isnt, but your behavior on this board is of great concern to me. Your attitude came across as snippy with a dash of superiority. And the Mom felt the need to try to justify her post on a forum that is plainly labeled for Parents of spectrum children, that is just not acceptable.
If you KNEW who this mother was, and you felt she had somehow defamed your group and action had to be taken to protect your clinic, it should have been done in private, or at least through your attorney. I could see no reason for concern by the clinic, noting was libelous, just a mother pouring out her heart.
I am sure you are a wonderful and loving mother, friend and a great employee, but IMHO you behaved in an unacceptable and inappropriate manner with this mother. It is my wish that you will indeed discuss this with your group, to assure that everyone is on the same page regarding confidentiality for the clients.
Just one last thought, no one or no system is perfect, it is natural for us to feel protective when we face critical judgments, yet thats the cost of the game. Perhaps you can use a system of CQI to improve first time visitors perception of your services. Maybe develop a followup survey for your clients and use that information to improve the services on an ongoing basis. You and I are mothers to spectrum children, we can both rememeber how it felt that 'day', and I think both of us would agree, there was no excuse for a DR to be so distracted that he was playing with his cell phone during the session. Maybe start with a new rule, no cell phones in exam rooms, it is highly disrespecful and distracting.
Now back to my hidey hole and I wish you both well, that the clinic director will continue to provide support and services to sp needs children and that the Mom can have real life and on line support, without being lectured and chastised...we all feel what we feel...and as long as we are respectful of each other , we should be able to get along.
Thanks for your timeMore wagging fingers. That's it, goodbye. This forum is definitely not for me. It's clearly for people who appear to think they know it all.
[QUOTE=Jean]I dont think I have posted on this forum in almost 2 years, however I feel compelled to comment on this subject. I have some (limited) knowledge of the privacy and ethical issues regarding information received in a health care setting, though I am no attorney, nor do I play one on the computer.
I did review some sites for the basic AMA ethics codes, and the psychological codes (which are even stricter than the AMA) and I will share the links here, in case anyone needs to review them.
http://www.continuingedcourses.net/active/courses/course032. php?PHPSESSID=4461064bf9ecc43ddaba547b0657fd81
http://www.ama-assn.org/ama1/pub/upload/mm/369/ceja_4a05.pdf
http://www.drozur.com/ethicsofconfidentiality.html
Of course we know there are many more sites if you care to see them, and each state will have its own regs and boards. Each clinical setting will have its own policys and procedures. I recommend that the clinical director of this program consult with her governing body, and / or the companys attorneys to review privacy and confidentiality. While you did not use names, I fear that if you did not cross the line in your post, you certainly were almost there. I was really, really concerned when you posted the reason why the Psychologist kept playing with his phone, that leads me to assume that you told him of your communication with this mother and he did not feel the need to remind you of privacy and ethical considerations? Again, it would have been very different if this had not been done on a public forum (IMHO). As you said, what is online (unless a private group) is public domain, so why would you choose that forum to chastise this mother? You said that you KNEW that the Dr spent more than 15 minutes, because you were there, then that whole visit was to be held in confidence by you, not posted on the internet.
IMHO this mother is feeling lost and needs support, encouragment and help, may I ask why she wasnt referred to a LCSW or family therapist? Why she wasnt allowed to go through her list of concerns (You know we are encouraged to document our concerns). Your clinic may be the best thing since sliced bread and toasters, I'm not saying it isnt, but your behavior on this board is of great concern to me. Your attitude came across as snippy with a dash of superiority. And the Mom felt the need to try to justify her post on a forum that is plainly labeled for Parents of spectrum children, that is just not acceptable.
If you KNEW who this mother was, and you felt she had somehow defamed your group and action had to be taken to protect your clinic, it should have been done in private, or at least through your attorney. I could see no reason for concern by the clinic, noting was libelous, just a mother pouring out her heart.
I am sure you are a wonderful and loving mother, friend and a great employee, but IMHO you behaved in an unacceptable and inappropriate manner with this mother. It is my wish that you will indeed discuss this with your group, to assure that everyone is on the same page regarding confidentiality for the clients.
Just one last thought, no one or no system is perfect, it is natural for us to feel protective when we face critical judgments, yet thats the cost of the game. Perhaps you can use a system of CQI to improve first time visitors perception of your services. Maybe develop a followup survey for your clients and use that information to improve the services on an ongoing basis. You and I are mothers to spectrum children, we can both rememeber how it felt that 'day', and I think both of us would agree, there was no excuse for a DR to be so distracted that he was playing with his cell phone during the session. Maybe start with a new rule, no cell phones in exam rooms, it is highly disrespecful and distracting.
Now back to my hidey hole and I wish you both well, that the clinic director will continue to provide support and services to sp needs children and that the Mom can have real life and on line support, without being lectured and chastised...we all feel what we feel...and as long as we are respectful of each other , we should be able to get along.
Thanks for your time[/QUOTE] please stay Cindy, regardless of this debate, people here are forgiving(not saying you need forgiving necessarily, I haven't read the posts :) and when this blows over I'm certain that you could contribute a lot to this forum.
This whole thing is confusing. First off how did autismlink know she is a member of this board and find her post :)
I just hope everything is resolved and we can can back to helping each other out :)
I just think it is wrong for someone who is venting about her child's eval to be told she is wrong in how she felt things went.
I agree with whoever said this just about crosses the confidentiality line. I would be livid if someone representing a center I went to came on here and started discussing my child's eval. The OP didn't like the dr, and I think it was wrong to try to convince her, and the rest of us, that it couldn't have gone the way the OP mentioned. I doubt she is making it all up.