Spring Flower Posted March 27, 2014 Share Posted March 27, 2014 I am like a yo-yo when it comes to this topic. My DS is 4 and has many "quirks" one of which is an obsession with anything related to mathematics. He falls down into tantrums several times a day and seems to live in his own world. It is impossible to get his attention and keep his attention. He often has a blank stare on his face which I think it means he is deep in thought, but I'm not sure. I could go on and on. Recently there was a thread on this board about getting an evaluation for a child that the mother suspects has Aspergers. I've considered having my son tested many times (not necessarily for Aspergers but anything) but after reading that thread I came away thinking I should. I thought about it for several days more and decided not to pursue it. We homeschool and I plan to meet my son where he is in all of his challenges. Why do I need a diagnosis? Will therapy or other interventions really help my son? Sure, I can see how he would SINK in public school. He is supposed to start K this fall and I cannot imagine him in a regular classroom. But since we are homeschooling, it shouldn't matter, right? Today I read something that said one in every 68 children is on the Autistic spectrum and how it is so important to have an early diagnosis. Now I'm right back where I was thinking I need to have him evaluated. A good friend of mine is a child psychologist and watches my kids once a week. Several months ago she asked if I had ever considered having DS evaluated. I have never brought up the topic before with her and I was almost relieved that she saw the same thing I did. (I was surprised she had the guts to bring it up unsolicited!) I just don't know what to do. Any advice? Quote Link to comment Share on other sites More sharing options...
JenneinCA Posted March 27, 2014 Share Posted March 27, 2014 My personal rule for when to get outside help is: is it affecting the quality of life, mine or anyone else in the family. If yes, then finding a way to get help makes sense. If not, then making changes isn't really necessary. It worked for feeding issues, motor skill issues, general aptitude testing, all sorts of stuff. Good luck. Quote Link to comment Share on other sites More sharing options...
Jennifer-72 Posted March 27, 2014 Share Posted March 27, 2014 Well, what you shared does raise quite a few red flags beyond quirky. I guess you have to ask yourself why is it that you think having a dx would be a negative and/or of no consequence. Seeking a dx is about supporting your child in ways that will provide the best outcomes for your child and your family. Also, it is important to keep in mind that many people have dealt with what they believe to be "x" dx only to many years later have the child evaluated and learn they were really dealing with y not x. For us my son was dx at around 2ish. I have never regretted having him dx. He simply would not be where he is without all of the early intervention and therapy he has received. Ds really could be a poster child for how crucial early intervention can be. The better understanding I have of my son through having him dx and being at every therapy appt over the years has also made me a much better teacher for ds and has allowed me to breakdown things for him in ways to facilitate his learning in not only academics but with executive functioning skills which are critical to his success in life. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted March 27, 2014 Share Posted March 27, 2014 There is no such thing officially as Asperger's any more. The majority of those who previously would've qualified as Asperger's under the previous diagnostic criteria will now fall under "Social Communication Disorder". Some will meet the more stringent criteria for Autistic Spectrum Disorder: http://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteriaHaving a label will make it easier to qualify for services though your health insurance. The prognosis for kids who receive intensive early therapy is much better than for those who don't have access to those therapies. Research has shown that up to 20% of those with "classic" autism will improve with intensive early therapy to the point where they no longer present as obviously autistic. It's controversial whether they are actually fully recovered, but certainly their quality of life is dramatically improved. Quote Link to comment Share on other sites More sharing options...
Kerileanne99 Posted March 27, 2014 Share Posted March 27, 2014 I actually have just been going through this with my dd4. She also has a deep obsession with anything number or mathematics related, the color purple, and a couple of others. It is difficult to describe, but several strange social quirks really raised red flags for me as well. The problem was, to see or talk to my dd you would never think autism as a standard reaction. She is extremely out-going, never-met-a-stranger, highly loquacious with a huge vocabulary, and so many other things that would make most casual observers scoff if I mentioned Autism... But she is so inflexible, has massive meltdowns if her schedule is violated or she doesn't get to do 'school'. Sensory issues with food, clothing, temperature, so many things. And I see it every day, as well as behavioral issues at her 6 hr/week play-based preschool. She is a huge mimic of behavior, but really struggles with appropriate reactions. She rarely plays WITH the kids at all. So my intuition just kept insisting that I should have her evaluated. Not because I needed a label, but there are certain things that might be of benefit. Social circles therapy for example. I had her fully evaluated by a psychologist specializing in gifted kids, just to help me know how to help her if necessary, regardless of diagnosis. The results truly helped me to understand her. It turns out she is really frustrated and annoyed at being in the play-based preschool for one. The most helpful thing for me was that when her IQ score tested at even higher than I had guessed, the psychologist showed me an overlap chart. There are sooo many overlapping areas/behaviors between truly gifted kids and autism, especially when they are so young and don't have the proper means/mechanisms to express their emotions in a constructive manner. This turned out to be the case with my child and has helped us to put plans in place to work on that. We gave her much more input on what SHE wants to learn and whether she wanted to attend special summer camps that might give her a more 'academic' challenge. We were able to make behavior charts that used some of those academic options as incentives. It must be so hard to be in a four-year-old body and want to be taken more seriously! Regardless, I am very glad that I listened to that little voice inside. It really has helped us to know her better, to understand what we can do to help her. Quirkiness, autism, 2E, *just* gifted, whatever the evaluation shows is still data. And the more data you have the more you can fine-tune your approach/plans. And if you go for a full evaluation you will not believe the amount of specific information on every little area of ability you will be given. We are STILL sifting through it. Trust your instinct! Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted March 27, 2014 Share Posted March 27, 2014 I would also strongly encourage you to read "Healing the New Childhood Epidemics" by Dr. Kenneth Bock and "The Autism Book" by Dr. Bob Sears. The proper nutitional support can make SUCH a difference for kids "on the spectrum". Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 27, 2014 Share Posted March 27, 2014 If you're worried, it's worth it to get it checked out. Your child may not qualify for a label (or, at least, not for a label other than gifted), or they might qualify for a label, but either way, knowledge is power. In my DD's case, she didn't get a label other than "gifted" with borderline x,y, and z-but those border lines have given me a place to look when it seems obvious that even if it's not considered clinically significant enough to diagnose, it is affecting her. Quote Link to comment Share on other sites More sharing options...
Barbara H Posted March 27, 2014 Share Posted March 27, 2014 If it is nagging at you it is worth pursuing. You can turn it around in your mind forever and really get nowhere with it. While homeschooling certainly can be a better fit for many kids, it doesn't make difficult behaviors or concerning issues magically go away. You still want your family to be able to happily interact, for your child to make friends, and be able to participate in group settings in the community. Whether it is just "quirks" or something diagnosable, you want to have strategies that will help him be able to learn and live happily. The one thing I would suggest though is that you make sure that the evaluator really has experience with "quirky" highly gifted children. This is a helpful book: http://www.amazon.com/Misdiagnosis-Diagnoses-Gifted-Children-Adults/dp/0910707677 Quote Link to comment Share on other sites More sharing options...
EndOfOrdinary Posted March 27, 2014 Share Posted March 27, 2014 I can only speak from the experience of having a brother who was not evaluated young because it was not a real hinderence then. It was years ago, before Aspergers or autism ment anything in the small mill town we lived. As my brother hit middle school the issues began to cross the "quirky" line, by high school it was blatant. The problem with trying to intervene then was that many behaviors had been very solidified. Secondly, he was still a teenager who thought adults to be bothersome. It truly feels like so many issues could have been headed off, intervention could have given him coping skills, or maybe at least lessen the fears and frustrations which have built in his life. I find the homeschooling part one of the best reasons for the designations. I have not always been in this place. I did not initially want my son labeled as gifted. The problem with that is, he thinks differently. My son at some point is going to need to interact with the general populous. I am not doing him any favors by not directly talking to him about how to integrate himself. Because you are homeschooling, you can do this in a non-threatening, non-judgmental way. I was scarred by the way public school handled my designation, but it wasn't the designation that was the problem. It was the way it was handled. Quote Link to comment Share on other sites More sharing options...
Korrale Posted March 28, 2014 Share Posted March 28, 2014 I am like a yo-yo when it comes to this topic. My DS is 4 and has many "quirks" one of which is an obsession with anything related to mathematics. He falls down into tantrums several times a day and seems to live in his own world. It is impossible to get his attention and keep his attention. He often has a blank stare on his face which I think it means he is deep in thought, but I'm not sure. I could go on and on. Recently there was a thread on this board about getting an evaluation for a child that the mother suspects has Aspergers. I've considered having my son tested many times (not necessarily for Aspergers but anything) but after reading that thread I came away thinking I should. I thought about it for several days more and decided not to pursue it. We homeschool and I plan to meet my son where he is in all of his challenges. Why do I need a diagnosis? Will therapy or other interventions really help my son? Sure, I can see how he would SINK in public school. He is supposed to start K this fall and I cannot imagine him in a regular classroom. But since we are homeschooling, it shouldn't matter, right? Today I read something that said one in every 68 children is on the Autistic spectrum and how it is so important to have an early diagnosis. Now I'm right back where I was thinking I need to have him evaluated. A good friend of mine is a child psychologist and watches my kids once a week. Several months ago she asked if I had ever considered having DS evaluated. I have never brought up the topic before with her and I was almost relieved that she saw the same thing I did. (I was surprised she had the guts to bring it up unsolicited!) I just don't know what to do. Any advice? Personally... I would as soon as possible. Even if it is just to give you peace of mind. I can't tell if he has anything that needs assistance either way. But I would heed the advice of your friend. This is a very difficult subject for someone to broach. Yes there are therapies, there is information, there is funding and there are services that he could quality for. Their earlier the assistance is offered the better the quality of life. My son had developmental delays when he was little. He has a preliminary diagnosis for autism. Which is basically their way of saying he may be on the spectrum because he has many red flags, but he is so high functioning that they can't say if it is quirks or not. His assessment was done when he was 2.5. Further testing was not suggested until he was 4-6. Until then... We treated it as autism and we do PRT, among other things. He has SPD and speech issues that have evolved, that we have been working with also. It has been a frustrating and up hill battle. And some days are worse than others. Quote Link to comment Share on other sites More sharing options...
Spring Flower Posted March 28, 2014 Author Share Posted March 28, 2014 Thank you so much for all your responses! I'm not sure why but I was expecting more responses to say, "Don't worry about it!" I think I was looking for validation for choosing NOT to test my child. Now I am more convinced than ever that I need to look into this seriously. I'm so grateful for this board and the stories shared here. I feel like no one IRL can understand my children and what we are going through. It is nice to know there are other people out there who know how I feel! Quote Link to comment Share on other sites More sharing options...
kbutton Posted March 28, 2014 Share Posted March 28, 2014 Thank you so much for all your responses! I'm not sure why but I was expecting more responses to say, "Don't worry about it!" I think I was looking for validation for choosing NOT to test my child. Now I am more convinced than ever that I need to look into this seriously. I'm so grateful for this board and the stories shared here. I feel like no one IRL can understand my children and what we are going through. It is nice to know there are other people out there who know how I feel! The Learning Challenges board is a good place to share as well--lots of 2e families there as well. Best wishes with your testing. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted March 28, 2014 Share Posted March 28, 2014 The way I look at it is this- my child either has the LD or he/she doesn't. Declining to test doesn't change that fact.That said, we haven't yet shelled out the $$$$ for my oldest two to have a full neuropsych eval even though I think they could both benefit from having one done. My 2nd child was actually on the waiting list to see the Eides but we had to pull him off of that when our financial circumstances changed. Quote Link to comment Share on other sites More sharing options...
fdrinca Posted March 28, 2014 Share Posted March 28, 2014 Another vote in favor of testing. There are few downsides to doing so. One of the great things about therapy for little ones is that it is, in my experience, a "fun" time for them. We have a great OT who makes therapy time my son's favorite times of the week. Quote Link to comment Share on other sites More sharing options...
ThoughtfulMama Posted March 29, 2014 Share Posted March 29, 2014 It sounds like you have made up your mind, but I also wanted to add support for getting him evaluated. Yes, as a homeschooler, you do have the ability to meet his needs, but maybe you could use some help deciding how to do that. And he's not going to be in school forever. Eventually he will need coping skills to navigate college, jobs, etc. and it's certainly easier to learn those skills as a child. Good luck! And remember that no diagnosis label changes your kid at all but can give you tools. Quote Link to comment Share on other sites More sharing options...
Donna Posted March 29, 2014 Share Posted March 29, 2014 If going through with an evaluation, you might consider taking him to someone familiar with gifted children and their possible quirks. I think sometimes those who are gifted have quirks others might see as being on the spectrum when the child really isn't especially if only seeing them for the amount of time an evaluation takes and in an unfamiliar environment. Whether he is or not doesn't change who he is or how you might handle his needs at any given time but there may be people who have experience helping children like him learn coping strategies for the future. Skills are taught through play during therapy sessions for children his age. Quote Link to comment Share on other sites More sharing options...
fdrinca Posted March 29, 2014 Share Posted March 29, 2014 If going through with an evaluation, you might consider taking him to someone familiar with gifted children and their possible quirks. I think sometimes those who are gifted have quirks others might see as being on the spectrum when the child really isn't especially if only seeing them for the amount of time an evaluation takes and in an unfamiliar environment. Whether he is or not doesn't change who he is or how you might handle his needs at any given time but there may be people who have experience helping children like him learn coping strategies for the future. Skills are taught through play during therapy sessions for children his age. I agree! Our little guy is 2e and has benefited so much from an OT who understands what's *him* and what's *changeable,* if that makes sense. The goal isn't to make him less quirky, but help him manage his quirks so that he can be happier in himself, with our family, and with others. Quote Link to comment Share on other sites More sharing options...
Spring Flower Posted March 29, 2014 Author Share Posted March 29, 2014 I agree! Our little guy is 2e and has benefited so much from an OT who understands what's *him* and what's *changeable,* if that makes sense. The goal isn't to make him less quirky, but help him manage his quirks so that he can be happier in himself, with our family, and with others. This is my EXACT goal! Thank you for putting it into words I could understand! Quote Link to comment Share on other sites More sharing options...
Plink Posted March 29, 2014 Share Posted March 29, 2014 When faced with choices like this I try to play devil's advocate with myself. What is the worst case scenario if you choose to avoid testing but find out later you needed it? What is the worst case scenario if you choose to have testing but find out later that you didn't need it? In general, my advice to parents is that if you think you might need testing, then you probably do need it. Our bias as parents tends makes us think that our kids are better, not worse, than they truly are, so any inkling of concern is usually based in truth. Quote Link to comment Share on other sites More sharing options...
Spring Flower Posted March 29, 2014 Author Share Posted March 29, 2014 I would also strongly encourage you to read "Healing the New Childhood Epidemics" by Dr. Kenneth Bock and "The Autism Book" by Dr. Bob Sears. The proper nutitional support can make SUCH a difference for kids "on the spectrum". Thank you, I put these books on hold at the library. Quote Link to comment Share on other sites More sharing options...
Spring Flower Posted April 1, 2014 Author Share Posted April 1, 2014 I just got home from the ped. and she wasn't sure how to do the referral. Do we want ASD testing or neuro psych testing? What is the difference? Quote Link to comment Share on other sites More sharing options...
Korrale Posted April 1, 2014 Share Posted April 1, 2014 Developmental assessment via school district for IEP. They can go from there. They will start with a short screening. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted April 1, 2014 Share Posted April 1, 2014 I just got home from the ped. and she wasn't sure how to do the referral. Do we want ASD testing or neuro psych testing? What is the difference?A neuropsychologist can test for ASD, but so can a developmental pediatrician, pediatric neurologist, or child psychiatrist. Depending on your insurance, you may need to see one of these specialist M.D.'s first in order to get a referral for a neuropsych exam.In my area, the developmental pediatricians have VERY long waits (6-18 months) but we were able to get in to see our family's pediatric neurologist with only a 3-5 week wait. So when we had DS evaluated, we had the neurologist do it. If I had realized that she could do the initial diagnosis, we would've had her evaluate youngest DD as well rather than waiting 6 months to see the developmental pediatrician.ETA: I would NOT go into a school district IEP evaluation without first having an independent eval on file for the child. The district has the financial incentive to deny IEP's whenever they think they can get away with it. If you have a medical diagnosis already on file for the child, they are less likely to deny the IEP because they know that the parent will probably take the denial to due process and the district would have to prove why their eval is right and the independent eval is wrong. Quote Link to comment Share on other sites More sharing options...
Spring Flower Posted April 1, 2014 Author Share Posted April 1, 2014 One more question. I called two different places (same hospital) today to find out about setting up an appointment. One is through the department of psychiatry and the other is through "The Center for the Child and Family." Our insurance will cover the testing either way but we have to choose one or the other. The psychiatry department has a 3 - 6 month waiting list. The Center for the Child and Family can get us in next week. The difference is that The Center for the Child and Family is a "non-certified" diagnosis or something like that. Has anyone heard of this? The school district here does offer free testing but our insurance will cover it at the hospital. We don't plan on putting our kids in school while we live in this state (2-3more years) so it doesn't make sense to test this route. Right? Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted April 1, 2014 Share Posted April 1, 2014 In some districts, HS students have the right to IEP services like speech or OT without enrollment in the PS. This really varies from place to place so it might be worth asking around. In my district, HS children have the right to an eval but the district only provides IEP services to students who are enrolled in a district school or the district's independent study program. So if we wanted to HS youngest DD but keep receiving services, we would need to have her placed into the district ISP (which I don't care for since it requires weekly meetings with a teacher and mandatory use of the district-approved grade-level textbooks).I don't know what a "non-certified" diagnosis would be, but I'd be leery of something with that name. What's the point of getting a diagnosis if it can't be used to get services through your health insurance, Regional Center, and/or the schools? Quote Link to comment Share on other sites More sharing options...
Korrale Posted April 2, 2014 Share Posted April 2, 2014 We have a current "preliminary diagnosis" which I am assuming is similar to "uncertified". Basically for us it means that he has on paper that he is high functioning ASD With other issues. And it qualifies him for IEP services. In our school district all children are given services if needed regardless of if they homeschool. I actually thought that IEP was a federally mandated thing. So I guess going that route might not be the way you want to go. For what it is worth my friend gets amazing services for her son via their school district even though her son is not enrolled in school. He gets 40 hours of in home ABA, as well as speech and OT in the home also. She was taking him to a program for an hour daily via their university. It was part of their student doctral training thing. After preliminary testing if we wanted more extensive services or more specifically to be granted SSI we would have had to drive across the state to have my son assessed by a team. They do an extensive work up here. There is a team that includes neurologists, psychologists, behaviourists. They do a lots of testing, mris, blood testing, genetic testing to rule out other possibilities. There are sites to look at that may offer help more specific to your state. Autism speaks is probably the most common. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted April 2, 2014 Share Posted April 2, 2014 I actually thought that IEP was a federally mandated thing. So I guess going that route might not be the way you want to go.Federal law mandates that the district evaluate all students and provide an offer as to what services the child would receive if enrolled in the PS. But it is left up to the districts as to whether they have to provide services to private and home schooled students. See: http://www.understandingspecialeducation.com/private-school.html Quote Link to comment Share on other sites More sharing options...
IsabelC Posted April 4, 2014 Share Posted April 4, 2014 If you think an evaluation would help you son, go ahead. It's really just a matter of what you will get out of it - if you gain more information, advice or assistance by getting a label, than it's a useful thing. Otoh, if it's only going to tell you stuff you already know, and you can't get any help (or don't need any) than assessing him won't be that helpful. My 5yo received a diagnosis after we took her to be assessed, in spite of both her teachers and her pediatrician telling us she was fine. Quote Link to comment Share on other sites More sharing options...
katilac Posted April 4, 2014 Share Posted April 4, 2014 It is impossible to get his attention and keep his attention. He often has a blank stare on his face which I think it means he is deep in thought, but I'm not sure. This jumped out at me. Lack of attention/awareness and staring into space are signs of absence seizures (what used to be called petit mal seizures). I would definitely get this checked - they usually order an EEG. It could be nothing, but because it is noticeable enough for you to specifically mention, I would definitely bring it up with his doctor. http://www.epilepsy.com/learn/types-seizures/absence-seizures Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted April 4, 2014 Share Posted April 4, 2014 This jumped out at me. Lack of attention/awareness and staring into space are signs of absence seizures (what used to be called petit mal seizures). I would definitely get this checked - they usually order an EEG. It could be nothing, but because it is noticeable enough for you to specifically mention, I would definitely bring it up with his doctor. http://www.epilepsy.com/learn/types-seizures/absence-seizuresOur pediatric neurologist told us that kids experiencing subclinical seizures typically show regression. Youngest DD never lost any skills- she has always moved forward in her development, albeit at a much slower-than-typical pace. The neurologist did order an EEG for DD, but everything came back normal. So she thinks DD's spacing out is a combo of boredom & ADD rather than seizures. Quote Link to comment Share on other sites More sharing options...
Spring Flower Posted April 4, 2014 Author Share Posted April 4, 2014 Our pediatric neurologist told us that kids experiencing subclinical seizures typically show regression. Youngest DD never lost any skills- she has always moved forward in her development, albeit at a much slower-than-typical pace. The neurologist did order an EEG for DD, but everything came back normal. So she thinks DD's spacing out is a combo of boredom & ADD rather than seizures. I'm not sure what to think. I will be sure to ask about seizures. DS has definitely shown regression in the past 6 months. At first I thought it was me feeling impatient and irritated with his behaviors but compared to where we were a year ago it is obvious that things are worse. We have gotten on the waiting list for an eval but it could be 3-6 more months. I'm crossing my fingers hoping that it will be sooner rather than later. Quote Link to comment Share on other sites More sharing options...
katilac Posted April 5, 2014 Share Posted April 5, 2014 I'm not sure what to think. I will be sure to ask about seizures. DS has definitely shown regression in the past 6 months. At first I thought it was me feeling impatient and irritated with his behaviors but compared to where we were a year ago it is obvious that things are worse. We have gotten on the waiting list for an eval but it could be 3-6 more months. I'm crossing my fingers hoping that it will be sooner rather than later. FYI, you don't need to wait for the eval in order to check out the possibility of absence seizures; and doctor should be able to do it (get it ordered). Quote Link to comment Share on other sites More sharing options...
Spring Flower Posted April 5, 2014 Author Share Posted April 5, 2014 FYI, you don't need to wait for the eval in order to check out the possibility of absence seizures; and doctor should be able to do it (get it ordered). I'm starting to freak out a little. The link you provided with info sounds all too familiar. We will have this checked out. My brother is epileptic. Quote Link to comment Share on other sites More sharing options...
Black-eyed Suzan Posted April 6, 2014 Share Posted April 6, 2014 I'm starting to freak out a little. The link you provided with info sounds all too familiar. We will have this checked out. My brother is epileptic. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
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