Possible miss DX? | Autism PDD
Candy, I was told before that the school system can NOT diagnose a medical disability only a LEARNING disability... they can however through EI suggest your child MIGHT HAVE a PDD/ASD but can NOT diagnose it. Heres some info from a sight about diagnosis...
http://www.firstsigns.org/treatment/dx.htm
- Surveillance and screening
(See Screening Guidelines) - Diagnosis
It is recommended that the formal diagnosis of autism is made by a physician who has extensive experience with, or specializes in, Autism Spectrum Disorders, such as a pediatric neurologist, a developmental pediatrician, a child psychologist or child psychiatrist. See Specialists for more information. - Medical and neurologic evaluation
This includes “a perinatal and developmental history” as well as a “physical and neurologic examination.” This can be performed by an experienced physician, a developmental pediatrician, or a pediatric neurologist. - Evaluation and monitoring of autism
As part of a team or multidisciplinary approach, specialists are called upon to evaluate and monitor a child after diagnosis. See Specialists for more information. - Speech, language, and communication evaluation
A comprehensive speech-language-communication evaluation should be performed on all children who fail language developmental screening procedures. These evaluations should be conducted by an experienced speech-language pathologist. - Cognitive and adaptive behavior evaluations
Tests such as the Vineland Adaptive Behavior Scales and the Scales of Independent Behavior “should be performed in all children with autism by a psychologist or other trained professional.” These evaluations “provide an overall index of ability” including social, verbal, and non-verbal skills. - Sensorimotor and occupational therapy evaluations
Depending on the presenting needs of a child, a physical therapist or occupational therapist may assess a range of skills, including: fine motor, gross motor, and sensory processing. For children thought to have sensory integrative dysfunction, the Sensory Integration and Praxis tests may be required. - Neuropsychological, behavioral, and academic assessments
These assessments may be performed by a psychologist or other experienced clinician. A child’s behavior, cognitive abilities, and social skills are core elements of these evaluations. An “assessment of family resources” is also important in order to determine if additional supports or resources may be needed.
If you go to the first post in the newbie thread, there is a list of links for signs and symptoms, characteristics etc of the different asd's and also some links to some on line evals that might be helpful.
Also, not trying to dispute the dx you received from the school, but,..... sometimes its confusing.... people will say its autism when its actually a higher functioning ASD like PDD NOS or Aspergers because lets face it most people dont even know what autism is,.... if we said PDD NOS or Aspergers (much less Childhood Disintegrative Disorder or Retts) the majority of people wouldn't understand what we were saying. So just an example - if a child has Aspergers and is pretty high functioning, to tell a dr he has autism (which then they then think of rainman) it might confuse them and make them question the dx.
I would say talk to your pediatrician and ask for a referal to a nearby specialist to have a complete eval done and have his dx confirmed....
I can relate very much to what some of you said in these posts. Not long ago, when the idea of asd came up for my son, I flipped out like you markdad. I self dx'd him constantly. I changed my mind every day, sometimes every hour as to what it all meant. Some days he seemed so very "normal" that I thought I was the crazy one who was overly worried and overly analyzing everything. Other days the asd "signs" seemed so apparent that I was convinced he had something on the spectrum. I'd go back and forth so much I was going crazy. I spent so much time researching and printing inet info (I have binders packed full) and talking to other parents...I was obsessed.
After a couple mths, I was able to just relax a lot. I don't know why for sure. I just felt ok with it all. Very accepting of it. I had time to learn about it and digest it. To me knowledge helps. Now I just know he is who he is. Sometimes getting a proper diagnosis is hard, especially at a young age I've heard. But it doesn't matter much to me anymore. I know what ds's probs and issues are. I know what his quirks are and what will start his tantrums. And I love him for who he is, regardless what he gets labeled with if anything at his eval in Sept. I find most of his quirks endearing and sometimes humorous.
Now I'm not saying it's not challenging and difficult to deal with his behaviors and I often dread taking him places, but he's my son and my heart. And he will be ok...I just know it. He will do just fine in life. When my stepmom first mentioned autism for my son I about freaked. Now I've realized it's not the end of the world. If my son had to be wheelchaired or lost an arm or what not I'd be very sad at first and worried about how it would affect his future and happiness, but after awhile I'd realize that he can still live a full wonderful life and he would just need maybe some therapies and extra understanding. SAme goes for asd. It's a physiological disorder I believe. Some say mental but I fail to see that.
I still worry at times and question things and wonder about his actions here and there. He hasn't been dx'd yet so I haven't quite gotten closure. But I've learned to see him more for who he is not what he might be.
Amber
And I thought I was the only one who dx ds everyday, every few hours sometimes!
Please keep us posted on the new dx.
What are your son's list of "a lot of things Autistic children do," out of curiousity.
I'm just wondering because I am in the pre-diagnosis whirlwind where I'm constantly self-diagnosing our son, too. There are so many conflicting approaches to diagnosis (hence so many misdiagnoses). There are doctors who won't diagnose Autism if the child makes eye contact with the parents (ours does). There are doctors who won't diagnose Autism if the child is making short phrases at 3 (ours does). That said, our son has tons of echolalia, out of context speech, occasionally toe walks, has trouble with eye contact at random times, has little or no imaginative play, and stims on occasion. Then again, I've also been told by some doctors that all of these can happen simply because of speech delay.
Yesterday, I was convinced he was PDD-NOS in the morning, then started to think he might be Asperger's in the afternoon, and ended the day convinced he had Semantic Pragmatic Language disorder.
Of course, all of those are considered part of the spectrum, and all require the same therapies, so it's somewhat a mute point. What the diagnosis is in no way determines our son's prognosis for the future. Only early education and therapy can determine that.
But I'm with you in feeling frustration at knowing so little. If I could see 10 years into the future, I'd be more calm, believe me (even if what I saw was sad... it'd keep me from getting my hopes up).
All we know at the moment is that EI thinks he's behind in communication (esp. social communication), but has many strengths to build on (some real language, excellent learning abilities, decent eye contact, excellent overall health, generally agreeable temperment, etc.).
We *really* need that diagnosis, so that I can stop this self-diagnosis game! I'm wrecking myself.
Did they ever perform a hearing test prior to the Autism dx? My 19 mo old ds had some of the characteristics of Autism (so I thought) - not reponding to name, not reponsive period, didn't follow simple directions, didn't point, made little eye contact. Then, 4 mos later he started growing out of those. We had him eval. recently and they said that he was delayed as a result of his series of ear infections over the course of 8 mos. We suspect that he had ear infections when we didn't know it.
So YES it is possible that there could have been misdiagnosis OR those who are doing the eval now may not understand Autism. Definately get a 3rd opinion after this one.
mark_dad,Leo doesnt communicate well unless it's pointing at things he wants or just standing by the fridge or cupboard and waiting for you to guess what he wants. He does do the handflapping when he gets nervous or excited, he doesnt follow commands like: go get your shoes, put on your coat, things like that, he lacks social skills and seems to want to play by himself unless his sister is with him, he likes to be in his own little world most of the time, and gets aggressive with you if you try to engage him in any activity. I'm in the same boat as you because there are days where I think he is just behind or maybe that is his personality, but I feel there is something else going on. I feel also thought that he may be HF and the school does believe he has potential to move forward. I really do sympathise with you.
little byrd,Whoops messed up
I was going to say to you little byrd that we found out yesterday that he may have a mild hearing loss due to all the ear infections when he was younger, and like you we didnt know sometimes that he had an ear infection. The good news is no more fluid in the middle ears, but we found out his tonsils are very big and seem to have stayed that way from his last infection. So we traded one thing for another 
I'm hoping on Friday we can get more answers and just continue therapy for now.Here is the problem me and Dh are experiencing, yesterday we went in to Albuquerque to have my ds see an ent and Audiologist, he had fluid build up in both ears and we wanted to re check them, this is where the problem starts, everytime we take him to see a DR. they look at us funny when we say he has been Dx with Autism. They always say, in my personal opinion he doesn't look or act like he has Autism. The thing is the school in Nebraska Dx him with Autism, we have seen a Neurologist and he said maybe but in his opinion no, also we have seen a Developmental Pediatrician and she said developmental delays only. This Friday we go back to talk to a Developmental Ped in Albuquerque, I'm hoping that they can shed some light on all this confusion. For me being his Mom and doing research he does have a lot of the signs for Autism, he also does a lot of things Autistic children do, so I'm just confused right now and wondering who should dx your child?Then how to kids get diagnosed thru the teams that come to schools.Do you have insurance that will pay for a reassessment? (medical reassessment). DO you have access to the first evaluation? Many things my child did / does are not typical for autism, but he certainly has enough chechmarks, to meet the DSMiv dx. I am a little upset that people are telling you your child doesnt 'look' autistic. There is no physical symptoms of asd (though I have read that asd children almost always are super cute).
This is JMHO, I would not be quick to jump at the idea of the school saying he is not asd, that is just my own opinion. I hope you can review the tests and notes from his original assessment . If a ped neuro told you he is Not ASD, you should investigate further (imho).
I pray with all my heart he is not ASD, just a little delayed and rapidly 'catching up". Good news about the ears being clear, sorry to hear about the tonsils.... Keep us informed and we are all cheering for you and your family!!!!
Thanks everyone for your honest opinions and suggestions, I'm going to go see a new Neurologist and see what he has to say. I dont want him to have ASD either but I feel in my gut there is more to it then the doctors think, I need to buy a video camera so I can tape him and the things he does at home. Most teachers I have met really dont like the ASD word and feel like it's becoming a blanket diagnosis, I just tend to ignore them and just convey my personal feelings. Thanks guys for all the support:)Reading up on the disorder and filling in the blanks for me helped to accept and deal with this. Rather than playing the self-guessing game, I now have a "real" lable (hate using that word) for him to where I can finally relax. Knowing there is help for him through Early Intervention gives me HOPE! There is soooo much information to where it makes my head spin. Sometimes I hafta literally drag myself away from the computer and absorb what I did learn. Sometimes I read too much and just want to cry. It is not easy to deal with these issues day in and day out. However, we must keep the Faith and KNOW there is help!
i am in the same boat w/ keith! first they said severe adhd w/ dd. started treatment for that and by him being more calm, hfa signs were more noticeable. the neurologist said that a lot of time if kids are on the wrong meds, the effects can be negative and that appears to be keiths problem. the meds are MAKING HIM ACT AUTISTIC
now the dr says he has S.I.( which blends a lot with the autism criteria) O.C.D. (which blends a lot with the autism criteria) and communication and developmental delays....which blends with the autism criteria. i mean he meets 80%+ where you need 6 symptoms to meet autism, he has like 10! anyway, dr is leaving dx as autism b/c i just got all the paperwork and funding based on that dx and only autism qualifies for the ssi, here, and the medicaid just started. rather than undo all of that, we are going forward trying to peel back all the possibilities! my 7 year old has an appt w/ the same neurologist in oct for possible mr/ld/aspergars dx. kate Candy, A lot of the things you mention are red flags for me. I am sorry you are caught up in all of these professionals not knowing what they are doing! ASD is hard to understand and a lot of professionals just aren't familiar enough with how wide the spectrum can be to make an accurate diagnosis. As far as the school diagnosing your son, there are two states in the country where schools ARE allowed to make a diagnosis without help from a doctor. Minnesota (where we live) is one of them and I don't know what the other one is - our dev ped told us this. Perhaps it is Nebraska? Anyway, in some ways this is a detriment as we have a medical diagnosis, but the school originally didn't qualify our son for services. We fought this and won, thankfully. It seems to me that the diagnosis is important because if you don't get an accurate diagnosis, you may not qualify for certain services. I have a friend whose child has got to be on the spectrum, but she has yet to get a diagnosis. She has gotten several others - like Disruptive Behavior disorder, Developmental Coordination disorder, etc. but not anything on the spectrum yet. Our dev ped said that he is very liberal in giving out diagnoses and he is proud of that. He gets very upset when he hears that doctors won't give out a diagnoses for one reason - like if a child seems to do okay with joint attention, the doctors won't give a diagnosis. Each of those symptoms is just ONE on the list of 12 on the DSM-IV list. You only need 6 symptoms to be classified and so, theoretically, there could be two children who both are on the spectrum and each could have a totally different set of symptoms. Why is one more important than any other? That just doesn't make sense to me. Especially since different dev peds seem to focus on all sorts of different ones. Some focus on joint attention, others focus on speech, others focus on social interactions, etc. Our dev ped gives out diagnoses so each child can get help quicker! He doesn't want parents getting bogged down in a labeling game only to find out 10 years later that their child could be doing a lot better if s/he got help 10 years sooner! I would trust your instincts and stick with the autism diagnosis that you have and fight for every service you can get! Good luck to you! We were just talking about this diagnosis game in a post by Jean earlier!
I also went through the self-test struggle when dd was 18-24 months old. At first I thought she just had visual/auditory sensory issues, and she had no speech or gestures plus regression. But the more I learned, the more I knew it was autism. I guess we were fortunate b/c we got a dx early and easily. Our regular ped immediately sent us to Ped Neuro when she failed the dev. screening at her check-up. He also referred us to a dev. ped. and Babies Can't Wait (EI). He told us then, although he wouldn't dx, he was pretty sure it was autism. All he could say was, "I'm sorry, I'm really sorry for you. It's going to be a long hard road for you, but there is a lot of new research and therapy out there." Sadly, as I've said before, in our case we already knew b/c it was very obvious. The one thing that I think helped in getting a good dx was that we went to a reputable neuro who was on staff at the Marcus Institute/Kennedy Kreiger in Atlanta. This is a group that is well known for research and treatment of ASD and our neuro had MANY years of experience with ASD children. After reading some of your posts, I feel really lucky that we have good doctors that we trust. Hang in there - I really believe your "gut instinct" will tell you what's right. Just remember, find a reputable doctor that you trust. This really makes all the difference and from there you can "mentally" move on and stop second-guessing the dx. Glad to hear your going to try a neurologist, Candy. I think it's a good way to go. That is the person who did the first real autism evaluation of my son. I hear the comments sometimes too, usually from well-meaning friends, about how my son doesn't seem autistic at all. Those can be tough, because oh, how I'd love to believe them. But if it's not coming from a dev ped, a neuro, a child psych, or other professional, then you have to take it with a grain of salt. I have to say on the self-diagnosing thing.....my son got the dx and I still do it!! When my son's having a great day I think, he's so mild, so boderline, maybe he was just misdiagnosed - he's gonna be just fine. On a bad day, I cry and worry about how much of a struggle this is going to be for him as he grows up. Some days it seems we're having almost real back-and-forth conversations. Other days like today, he finishes a puzzle and runs in to find me and just stares at me with a smile. I know he wants to tell me "Come see what I did, Mom", or "Hey, I did it", but he just stands there. The constant self-diagnosing is soo frustrating, and I don't know that I'll ever be able to stop doing it. But the worst would be to try and deny it away, or do nothing & hope for the best, and I will never do that. It sounds like you know your kiddo pretty well. Trust your instincts and get that neuro appt! Rachel
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