GAPeachie Posted September 27, 2012 Share Posted September 27, 2012 So we got a jumbled message from the pyschologist (our follow up appt is at the end of October...) about our son's testing. She is referring us to a psychiatrist. She said that she isn't done with the case but she for sure sees ADHD and some Asperger's but then goes on to say that she doesn't want to officially diagnose the Asperger's. Can someone shed some light on why this is? Or what the benefit would be to not have a label right now? Also, the school system is waiting on our private testing results.. we have another meeting in November. I wonder what the outcome will be without that diagnosis? Or is everyone just giving me the run around? Just trying to figure out where to go next, I guess. :confused: Quote Link to comment Share on other sites More sharing options...
Guest Posted September 27, 2012 Share Posted September 27, 2012 I found this old thread rather interesting: http://forums.welltrainedmind.com/showthread.php?t=219585 Quote Link to comment Share on other sites More sharing options...
GAPeachie Posted September 28, 2012 Author Share Posted September 28, 2012 I found this old thread rather interesting: http://forums.welltrainedmind.com/showthread.php?t=219585 Thanks! I tried to search but didn't come up with too much. We have group insurance through a large employer. Most of us have pre-existing conditions. Mine is a blood disorder. So private insurance has never really been an option for us at all. I think without taking the label, we aren't going to qualify for services as I understand it. I dunno. Something to think about further and pray over. Wish I could fast forward time in a machine and see how these decisions shape the future though. Quote Link to comment Share on other sites More sharing options...
Guest Posted September 28, 2012 Share Posted September 28, 2012 (edited) Thanks! I tried to search but didn't come up with too much. We have group insurance through a large employer. Most of us have pre-existing conditions. Mine is a blood disorder. So private insurance has never really been an option for us at all. I think without taking the label, we aren't going to qualify for services as I understand it. I dunno. Something to think about further and pray over. Wish I could fast forward time in a machine and see how these decisions shape the future though. For the time being, I have not sought out an evaluation, even though I am at least seeing some Asperger's traits. It is a personal decision since we are high functioning and so far what ever it is I am seeing has not affected my boys enough that I have felt the need for services, even though I have been researching autism as much as I can myself and tackling weaknesses I see in my son through various materials. Anyway, I am definitely not the right person to give you advice ;). I do hope others chime in with some helpful comments for you. I would love a time machine also! One thing I can tell you that I would definitely do in your shoes though, is ask the psychiatrist why she feels that way. It's a tough call deciding what to do! Hope you find the best solution :grouphug:! Edited September 28, 2012 by Guest Quote Link to comment Share on other sites More sharing options...
GAPeachie Posted September 28, 2012 Author Share Posted September 28, 2012 One thing I can tell you that I would definitely do in your shoes though, is ask the psychiatrist why she feels that way. It's a tough call deciding what to do! Hope you find the best solution :grouphug:! Right. Since she left this information on a voicemail (after telling my husband she could only give results in person :confused:) we didn't have the opportunity to ask any questions. We have an appointment at the end of October. We are really struggling to find folks to help us at all due to his age. It's maddening. All I know is that he cannot continue to have outbursts like he has been having. Quote Link to comment Share on other sites More sharing options...
Guest Posted September 28, 2012 Share Posted September 28, 2012 She left that information on voice-mail :confused:! I don't know why you are not getting any other replies :confused:! Sorry for that! During the summer I read "Does My Child Have Autism" by Wendy L. Stone and Theresa Foy DiGeronimo. A fellow forum member (Jennifer72) had recommended it in another thread. It has a lot of useful information about testing and I believe it was in that book that I read about how some doctors hesitate to diagnose a young child. Check your library. I found it very useful. There was a big focus on EI which your child is past age wise (right?) but I still found it very helpful. I can't see how you could get services if she does not give you the diagnosis though! Quote Link to comment Share on other sites More sharing options...
GAPeachie Posted September 28, 2012 Author Share Posted September 28, 2012 Yes, he is over three. So when I called EI, they sent me to the school district for evaluation. We did a screening and then I had a meeting at the school for the results. They told me I have an extremely bright child with poor attention, social skills and impulse control. Then they told me that because we were having him privately evaluated that they didn't want to do any other testing of their own until we got those results and set up a meeting for November 7th. We have developmental preschool here (which they told me is full and priority is given to 4 year olds.) Sigh... I will look for that book. Thank you! Quote Link to comment Share on other sites More sharing options...
Guest Posted September 28, 2012 Share Posted September 28, 2012 Yes, he is over three. So when I called EI, they sent me to the school district for evaluation. We did a screening and then I had a meeting at the school for the results. They told me I have an extremely bright child with poor attention, social skills and impulse control. Then they told me that because we were having him privately evaluated that they didn't want to do any other testing of their own until we got those results and set up a meeting for November 7th. We have developmental preschool here (which they told me is full and priority is given to 4 year olds.) Sigh... I will look for that book. Thank you! Your boy sounds like my little guy if you take out the poor attention. He is more on the appear deaf sometimes but know exactly what you are saying, category. We have impulse control issues and some rare meltdowns. We did have some aggression before we went gfcf. He also did not feel pain prior to the diet. I have experimented with gluten and he seems to be sensitive to it so I have kept it out of our diet. I have also brought back casein (through yogurt) on occasion and my oldest does not do well with that. I seem to have a sensitivity to both so we have decided to stick with the gfcf diet from now on. Temple Grandin recommends trying the diets for young children, before attempting meds. I would highly highly recommend reading her book "The Way I See It". She has some great advice in it. Your library should carry both this one and the other I mentioned. I am in Canada and my library carries both. Quote Link to comment Share on other sites More sharing options...
GAPeachie Posted September 29, 2012 Author Share Posted September 29, 2012 Hmm I'll add that to my list for the library tomorrow. He is already dairy free, egg free, nut free, blueberry free, carrot free, red dye 40 free, soy free and corn free. We just ended a 3 week gluten free trial... we saw no improvement. Yeah I know... :confused: Quote Link to comment Share on other sites More sharing options...
Guest Posted September 29, 2012 Share Posted September 29, 2012 Hmm I'll add that to my list for the library tomorrow. He is already dairy free, egg free, nut free, blueberry free, carrot free, red dye 40 free, soy free and corn free. We just ended a 3 week gluten free trial... we saw no improvement. Yeah I know... :confused: Sorry about that :(! The diets don't work for everyone. For what it's worth, gluten can take up to 3 months to clear your system. Casein (from dairy) takes only 3 weeks. I saw a big difference in my little guy pretty much from the start though. Another suggestion, start a new thread. It is possible that people are not posting here because I did. I feel bad about that! If you start another thread I will stay away and hopefully you will get some helpful posts. Since I have not had evaluations myself, there is not much advise I can give you on that. I do hope for the best for you and your little guy though :grouphug:! Quote Link to comment Share on other sites More sharing options...
Mukmuk Posted September 29, 2012 Share Posted September 29, 2012 I would reply, except I have no experience with Aspergers :001_smile:. But my son has a host of sensory issues as well. I took him off gluten about 2 years ago because our family has a documented history of gluten sensitivities. Things were marvelous till I decided to ease him back into a regular diet- disaster! It was only then that we did a full blown test. He's got leaky gut. Result- he's off casein and gluten. I saw a strong improvement in about 5 weeks after we restarted his gf diet and banned dairy. By improvement, I mean a more engaged child, and his rashes (which came back when he started gluten) have disappeared. Also, his tummy used to be so bloated, but that's gone too. I think he's more comfortable and sleeps a lot better too. Quote Link to comment Share on other sites More sharing options...
Guest Posted September 29, 2012 Share Posted September 29, 2012 I would reply, except I have no experience with Aspergers :001_smile:. But my son has a host of sensory issues as well. I took him off gluten about 2 years ago because our family has a documented history of gluten sensitivities. Things were marvelous till I decided to ease him back into a regular diet- disaster! It was only then that we did a full blown test. He's got leaky gut. Result- he's off casein and gluten. I saw a strong improvement in about 5 weeks after we restarted his gf diet and banned dairy. By improvement, I mean a more engaged child, and his rashes (which came back when he started gluten) have disappeared. Also, his tummy used to be so bloated, but that's gone too. I think he's more comfortable and sleeps a lot better too. We have sensory issues here also and the results that you saw in your child is what I saw in my child also. We did not do any testing but I did suspect leaky gut. We have family immune deficiencies like Hashimoto's Thyroiditis and some sensitivity to yeast so gluten especially is a big one for us. I saw great improvement in my oldest son's attention from cutting out casein. He seems more sensitive to casein while my youngest seems more sensitive to gluten. It is evident to me though that both are an issue in our home. Quote Link to comment Share on other sites More sharing options...
Tap Posted September 29, 2012 Share Posted September 29, 2012 Sometimes they don't want to pigeon hole a child if their tests are borderline. DD5 is diagnosed PDD-NOS but her psychiatrist and behavior therapist both feel that she has Aspergers. The funny thing is, the reason they don't diagnose her with Aspergers is that we have done so much therapy and so much work over the past 4 years, that we have worked through a lot of the diagnostic criteria. If you go back to notes from when we started therapy, she definitely fits the criteria. We do not want her diagnosed now because we want her looked at for who she is and what her individual issues are. We do not want assumptions made about her based on her diagnosis. DD5 started public kindergarten this year. She has an IEP. She visits with the school psychologist, she has time with the school resource teacher, but I don't discuss a lot of her issues with her teacher. The teacher has access to all of her records, but since she is so young, there aren't a lot of specifics in her file, mainly diagnosis notes and specific major issues that help her qualify for services. We see a private psychiatrist and behavior therapist that are not associated with the school. I purposefully don't tell her teacher about her smaller issues (only the ones that truly interfere with her life) because I want the teacher to assign and expect full work from her. If something becomes an issue, then we will deal with it. I don't want the teacher to automatically make assumptions that she will have language difficulties or assume that she will be unable to make correlations between subjects. She is able to hold a lot of her issues in check at school and then lets loose when she gets home. I firmly believe that part of her success can be tied to the expectations her teacher holds the class to. Over time, we hope that some of those modified behaviors will become more and more ingrained in her. With Aspergers, there are some issues that the child cannot help. BUT some of those issues can be worked through and resolutions can be taught. Things that other people learn naturally, have to be worked on and can take a lot of effort for those with Aspergers to learn, but it can be done. And peer pressure can have positive results, not just negative ones. I don't want her teachers to think "dd5 struggles with social skills so I won't expect her to instigate a conversation with a playmate on a playground. I will do it for her." We work hard in therapy to teach dd5 skills like 'how to ask someone to play with you', 'how to deal with someone who knocks over your blocks (without hitting them)', 'how to tell someone you don't want to play (without saying "go away") etc. Quote Link to comment Share on other sites More sharing options...
GAPeachie Posted September 30, 2012 Author Share Posted September 30, 2012 When Xander went back on formula (last Decemeber) it was gluten free too. Long story, but that should have been a sufficient length of time to see improvements. We reluctantly tried it again and our chiropractor said that we should see some improvement around week 3. No such luck. All of the other foods are easy for us to pinpoint issues, so we know we are on the right track with that. We don't want to make excuses for him, or pigeon hole him, but from the phone calls I made on Thursday and Friday without a diagnosis it seems like we are going have issues accessing services without it. What I really need is to get back in touch with the psychologist. We are hoping for a cancellation so we can get in with her faster than the end of October. Quote Link to comment Share on other sites More sharing options...
Mukmuk Posted September 30, 2012 Share Posted September 30, 2012 :grouphug: I have no advice but hope the situation improves with therapy. :grouphug: Quote Link to comment Share on other sites More sharing options...
Tap Posted September 30, 2012 Share Posted September 30, 2012 (edited) When Xander went back on formula (last Decemeber) it was gluten free too. Long story, but that should have been a sufficient length of time to see improvements. We reluctantly tried it again and our chiropractor said that we should see some improvement around week 3. No such luck. All of the other foods are easy for us to pinpoint issues, so we know we are on the right track with that. We don't want to make excuses for him, or pigeon hole him, but from the phone calls I made on Thursday and Friday without a diagnosis it seems like we are going have issues accessing services without it. What I really need is to get back in touch with the psychologist. We are hoping for a cancellation so we can get in with her faster than the end of October. I understand needing a diagnosis for treatment! We just stopped at the PDD-NOS diagnosis and left it at that. (If you aren't familiar PDD-NOS is the umbrella diagnosis that Aspergers, Autism and other similar diagnosis are under). Depending on what services your child needs, a diagnosis like Aspergers could be very valuable. I just wanted to say why we chose to not push for the more specific diagnosis instead of the more broad PDD-NOS. For us, a big part of that is that she is now considered borderline. If I had a child that was absolutely, definitely and wholly diagnosable as one specific diagnosis.....I would have no problem seeking that out. I think we have an odd advantage with access to services. With dd being adopted, it seems like agencies are more willing to work with us and are more open to granting assessment. This is just based on my friends experiences, so it is anecdotal at best. Edited September 30, 2012 by Tap, tap, tap Quote Link to comment Share on other sites More sharing options...
Guest Posted September 30, 2012 Share Posted September 30, 2012 (edited) Stephanie, I am glad the others replied also. I just wanted to say, I don't think anyone here was trying to say that you are finding excuses for your child, but rather, share our own experience in the hopes that you might find something useful or at the very least show you that you are not alone :). I wanted to correct one of my previous posts. I meant to say tantrums, not meltdowns. I just realized I had typed meltdowns. I remembered your other thread after I had already posted here. I just wanted to say, that in your situation I personally would push for the diagnosis. Your little boy clearly needs the services. I can't imagine how you will be able to handle the situation and help him without them :grouphug:. I think you and your husband need to make that clear to the psychiatrist. You might want to PM Crimson Wife for some advice, if she doesn't mind. She has dealt with the system and is very knowledgeable about getting the services her child needs. She also seems fortunate to have found a good doctor, a big plus in all this. I think my approach would have been different also, if we had a good reliable doctor. Anyway, I will keep you and your boy in my thoughts and prayers :grouphug:. Edited September 30, 2012 by Guest Quote Link to comment Share on other sites More sharing options...
dkpalaska Posted September 30, 2012 Share Posted September 30, 2012 Just to chime in with a comment directed at the original post: In truth, think I'd rather see the psychologist be cautious and thoughtful about this, although it's really hard on your family while you wait for the final diagnosis; and it's all compounded by how hard it is to get in to see the psychologist again and/or even talk with her. You need the label for services, yes, but it also helps you learn more about your son and how he relates to the world. It empowers you, in a sense, to advocate for him in all areas of his life; and helps direct the specific services that will help him the most. At least, it worked that way for me. And with it giving you so much benefit, you really don't want the wrong label(s)! That makes everything so much more frustrating. All the literature I've read emphasizes how difficult it is to accurately diagnose (most) very young children. Fortunately this is recognized so that the diagnosis can be revisited as a child matures, but still: it's best to get the most accurate diagnosis possible. He is so much more than a label, but the correct label will help. I'm just sorry it's taking so long to get there for you. :grouphug: Quote Link to comment Share on other sites More sharing options...
dbmamaz Posted September 30, 2012 Share Posted September 30, 2012 If tantrums and meltdowns at home are your biggest issue, i honestly dont think you will find a lot of help from school or private services. Have you tried any of the books about dealing with challenging kids? Often the kinds of discipline you use for regular kids will backfire on these 'different' kids, and you have to learn new ways of handling them. I can never remember the names of them - the explosive child is probably one of them? Quote Link to comment Share on other sites More sharing options...
GAPeachie Posted September 30, 2012 Author Share Posted September 30, 2012 Marie, I didn't feel like anyone was accusing me of making excuses. I've been processing as I type and things are coming out rather disjointed. *blush* TapTapTap- Thanks for the information about PPD-NOS. A friend back home suggested that perhaps the psychologist was trying to say that she wasn't going to give us an Asp. diagnosis because she intended to give us a PPD-NOS one instead, but that she didn't explain that on the voicemail. I guess we will see. Quote Link to comment Share on other sites More sharing options...
GAPeachie Posted September 30, 2012 Author Share Posted September 30, 2012 If tantrums and meltdowns at home are your biggest issue, i honestly dont think you will find a lot of help from school or private services. Have you tried any of the books about dealing with challenging kids? Often the kinds of discipline you use for regular kids will backfire on these 'different' kids, and you have to learn new ways of handling them. I can never remember the names of them - the explosive child is probably one of them? I have looked at that. Most of the meltdowns/tantrums we see are when he is overstimulated. But he is also a sensory seeker not a sensory avoider, so it is a vicious cyle. I think we need coping skills. Today the tantrum/meltdown was at church. He usually begs to go to church and asks at least 5 out of the 6 days that we do not attend. Right now his sleeping is practically non-existant which has only exacerbated the situation. We've tried melatonin and other natural remedies, a strict bedtime routine, even medication, etc, etc. He went from sleeping through the night to, well--not, instantly. We are going on week 8 or so of no sleep. I mean, our newborn sleeps better than he does at night. :001_huh: Quote Link to comment Share on other sites More sharing options...
Nature Posted September 30, 2012 Share Posted September 30, 2012 There are a lot more services for someone who is on the autism spectrum vs. someone who has adhd. We did the gfcf diet for a couple years and it took over 6 months to notice a difference, but then it was remarkable. DS was no long impulsive or distracted. He didn’t have as many sensory issues, rituals went away and there were hardly any behavior issues. We also eliminated all food dyes and artificial sweeteners. When he went off the diet, all of these things started coming back. Quote Link to comment Share on other sites More sharing options...
Guest Posted September 30, 2012 Share Posted September 30, 2012 (edited) I have looked at that. Most of the meltdowns/tantrums we see are when he is overstimulated. But he is also a sensory seeker not a sensory avoider, so it is a vicious cyle. I think we need coping skills. Today the tantrum/meltdown was at church. He usually begs to go to church and asks at least 5 out of the 6 days that we do not attend. Right now his sleeping is practically non-existant which has only exacerbated the situation. We've tried melatonin and other natural remedies, a strict bedtime routine, even medication, etc, etc. He went from sleeping through the night to, well--not, instantly. We are going on week 8 or so of no sleep. I mean, our newborn sleeps better than he does at night. :001_huh: Sensory issues often come as a package with autism. Not that you cannot have them without it but they are often seen in autistic kids. It was another reason that made me take a closer look at autism. They can cause various issues, anxiety being one of them. Sleep disorders are another issue seen in children with autism. http://www.webmd.com/brain/autism/helping-your-child-with-autism-get-a-good-nights-sleep If you check the list of sleep problems, the only one we now have (after the diets) is "Inconsistent sleep routines". I never had that issue with my oldest but with my youngest... Since he was born he did not sleep for long periods of time. He most certainly slept less than any other baby I have ever heard of. He would doze off in my arms and immediately wake up the moment I tried to put him in his crib. It was why I nicknamed him Napoleon. I did not know what getting 5-6 continuous hours of sleep meant until about 6 months ago. I was getting very little sleep. With the diets it took a few months for us also, to see a difference in his sleep but I slowly did. I can now see him sleeping without being restless or waking up all the time. This has very likely made a difference in the tantrums also. His routines are inconsistent still though (we are working on it), which is why you will often find me posting in the middle of the night :tongue_smilie: (we are on PST- Pacific Standard Time). It is a huge improvement though. He actually gets about 10,5 hours of sleep during a 24 hour day now. Most if not all of it at night so I am counting my blessings. The waiting and trying to figure out what to do can be nerve-racking. Hope you find some solutions that work for your boy soon! Edited October 1, 2012 by Guest Quote Link to comment Share on other sites More sharing options...
Guest Posted September 30, 2012 Share Posted September 30, 2012 Marie, I didn't feel like anyone was accusing me of making excuses. I've been processing as I type and things are coming out rather disjointed. *blush* Good :)! I was worried! Quote Link to comment Share on other sites More sharing options...
Guest Posted September 30, 2012 Share Posted September 30, 2012 There are a lot more services for someone who is on the autism spectrum vs. someone who has adhd. :iagree: Quote Link to comment Share on other sites More sharing options...
dbmamaz Posted September 30, 2012 Share Posted September 30, 2012 Right now his sleeping is practically non-existant which has only exacerbated the situation. We've tried melatonin and other natural remedies, a strict bedtime routine, even medication, etc, etc. He went from sleeping through the night to, well--not, instantly. We are going on week 8 or so of no sleep. I mean, our newborn sleeps better than he does at night. :001_huh: :crying: aww, poor kid and poor mom! When my middle one didnt sleep, it definitely made things worse. He was eventually put on meds for anxiety (this was age 9, though) and it really helped with the sleep. Have you had a sleep study? Or checked for seizures? My teen daughter also wasnt sleeping for a while. at one point she had slept 3 hours in 2 days and came swinging at me, certain that i'd been running at her ready to attack . . .she still believes that . ..i was walking quickly (because i was mad) to go get her brother. Lack of sleep is just horrible. Quote Link to comment Share on other sites More sharing options...
GAPeachie Posted October 1, 2012 Author Share Posted October 1, 2012 Have you had a sleep study? Or checked for seizures? We are waiting to get in.... *sigh* (We are also right outside of Richmond-- despite my username.) Quote Link to comment Share on other sites More sharing options...
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