Heather in Neverland Posted April 9, 2009 Share Posted April 9, 2009 My niece was born premature at 27 weeks. She weighed only 2 pounds and spent 8 weeks in the NICU. However, she breathed on her own from birth, no ventilators, and has no issues with her heart, lungs, eyes, ears, brain...all the typical things premature babies have issues with. She is now 4.5yo and is beautiful, healthy and of above average intelligence. BUT There is something a little "off". It is hard to describe. It's like she is disconnected "emotionally" from most everyone. Very aloof, very distant. Sure, she has emotions...like she can throw some of the most massive tantrums when she doesn't get her way! And she is attached to her parents and my youngest ds. But that is really about it. She doesn't make eye contact with anyone. Shows little to no emotion...mostly blank stares. Is not physically affectionate and actually dislikes if you try to hug her. She seems to lack or not respond to social cues. For instance, they came over last weekend and she wanted to see Alex (my youngest). She walks in the door and I say "Hi Sophie!" and she says (without looking at me), "Where's Alex?" And I say again, "Hi Sophie!" She repeats "Where's Alex?" We did this about 3 or 4 times and I gave up. She is extremely particular about all kinds of things. I don't know if I am describing this well but there is just something that is a little "off". My friend suggested Asperger's but I don't know much about it. And if it is: a) how is it diagnosed? b) what can you do about it? Quote Link to comment Share on other sites More sharing options...
specialmama Posted April 9, 2009 Share Posted April 9, 2009 Sounds like an aspie to me, or high functioning autism. I would get a referral to a child psychologist who specializes in diagnosing childhood developmental disorders. Do not let a regular doctor diagnose as they often miss something. When dealing with these "unseen" disorders, it really is best to go to someone who specializes in that area. She'll need lots of direction in life, mostly those close to her to tell her what to say in certain situations, how to modulate her voice, etc. Don't worry about offending her by telling her what to say. It is often very nerve racking for them to flounder along, they appreciate being told what to say, how to say it, when. Aspies do not understand sarcasm, or words that they can't see, you could help her with this by explaining what people mean, you can "paint a picture" for her of what the person means. An OT can work with the sensory issues. Good luck! Quote Link to comment Share on other sites More sharing options...
Heather in Neverland Posted April 9, 2009 Author Share Posted April 9, 2009 how to modulate her voice, Oh WOW! She DOES need help with this. She often sounds deadpan, almost like a robot. Quote Link to comment Share on other sites More sharing options...
Stacie Posted April 9, 2009 Share Posted April 9, 2009 (edited) From what you indicate, it certainly appears there may be a disorder somewhere along the spectrum. There are other things that can masquerade as such, though. She should be seen by a specialist that can determine fully. There are different paths that you can take to get a proper diagnosis. It depends a lot on personal preferance, availability in your particular area, and insurance. Consider a doctor in one of these specialties: Childhood Development, Pediatric Neurologist, or Child Psychiatrist. Or better yet is a practice specializing in spectrum disorders that employ all or a combination of the above! Once a diagnosis is made, there are many different types of treatment. These are specialized to the child and her needs, but can vary from physical therapy, occupational therapy, speech therapy, nutritional and dietary changes, and many others. You are welcome to PM me with any more questions. Good luck with her! Edited April 9, 2009 by Stacie Quote Link to comment Share on other sites More sharing options...
PollyOR Posted April 9, 2009 Share Posted April 9, 2009 Sounds like my nephew(9) who has high functioning autism. He has a monotone voice and walks around growling and grumping at the world. My 7yo adores him. :) I believe sister-in-law worked with the public school system to find out what was going on. Quote Link to comment Share on other sites More sharing options...
Carrie12345 Posted April 9, 2009 Share Posted April 9, 2009 4 is about the age where we started to realize that something was up with J. Like others said, don't take the word of a generic doctor. Our pediatrician dx'ed J with Asperger's after 15 minutes, and it ticked me off. I moved on to specialists and multiple evaluations spread out over several months. While he wound up with the same dx, we were able to get a much clearer picture of his specific issues and how to help him. Just remember that no two spectrum kids are alike, even when they have the same dx. Therapy and accomodations really need to be child-specific! Quote Link to comment Share on other sites More sharing options...
Heather in Neverland Posted April 9, 2009 Author Share Posted April 9, 2009 4 is about the age where we started to realize that something was up with J. Like others said, don't take the word of a generic doctor. Our pediatrician dx'ed J with Asperger's after 15 minutes, and it ticked me off. I moved on to specialists and multiple evaluations spread out over several months. While he wound up with the same dx, we were able to get a much clearer picture of his specific issues and how to help him. Just remember that no two spectrum kids are alike, even when they have the same dx. Therapy and accomodations really need to be child-specific! So there ARE things that can be done for it...treatment and therapy and such? I mentioned to my brother about the asperger's and his response was "Well, there is nothing we can do about it." What he means is that there is no medication for it and you can't cure it so it's not worth exploring. :confused: Quote Link to comment Share on other sites More sharing options...
Jennifer in MI Posted April 9, 2009 Share Posted April 9, 2009 So there ARE things that can be done for it...treatment and therapy and such? I mentioned to my brother about the asperger's and his response was "Well, there is nothing we can do about it." What he means is that there is no medication for it and you can't cure it so it's not worth exploring. :confused: Oh yes!! There are definately things that can be done about it! My ds is 12 and I don't think most people know he has Asperger's when they meet him. He went through Occupational Therapy. I worked with him at home daily on Social Stories. I read and read and read about things that worked for others and applied them to Sam. Vitamins, diets, supplements, etc, etc, etc. He went from a child who would growl and hide from people to being someone who can now carry on a conversation with people. It's not always comfortable for him, but he can do it. He went from having TERRIBLE awful screaming fits to someone who could control himself. I can't even begin to explain all the differences in Sam!! Good luck with your niece. It's great that she has someone who cares so much! Quote Link to comment Share on other sites More sharing options...
Stacie Posted April 9, 2009 Share Posted April 9, 2009 Yes, we've had wonderful results from different courses of treatment, specifically diet changes, nutritional supplements, and therapy. In fact, my ASD child no longer tests on the spectrum. He's been tested twice since receiving treatment and I could have him released from the diagnosis but I chose not to. I encourage you to have her parents read as much as they can on the topic. Many different courses of treatment are available but not all are accepted by all doctors. One doctor may prefer therapy, one prefer medication, one prefer diet changes, etc. If she attends school, they should work with her counselors there to continue her preferred mode of treatment throughout the day. The more knowledge they have as parents, the more involved they are in her treatment and the better they are at navigating her treatment options. Quote Link to comment Share on other sites More sharing options...
Carrie12345 Posted April 9, 2009 Share Posted April 9, 2009 So there ARE things that can be done for it...treatment and therapy and such? I mentioned to my brother about the asperger's and his response was "Well, there is nothing we can do about it." What he means is that there is no medication for it and you can't cure it so it's not worth exploring. :confused: Well, he's wrong. :) Some kids do take medications for certain *aspects of their disorder. Then you have your psych/soc therapies, speech therapies, social skills classes, or physical and/or occupational therapies. Not that every child needs all of those things, but they're extremely helpful for many. For J, "studying" logic has been a huge help. Making accommodations at home, like setting schedules and routines, writing lists and working on organizational lists are absolute MUSTS for him. My goal for him is to prepare him for a self-sufficient life. I think it will happen. It might not. But if I did nothing, I guarantee it wouldn't! Quote Link to comment Share on other sites More sharing options...
Carrie12345 Posted April 9, 2009 Share Posted April 9, 2009 Best book for beginners- http://www.amazon.com/Aspergers-Syndrome-Guide-Parents-Professionals/dp/1853025771/ref=sr_1_5?ie=UTF8&s=books&qid=1239301641&sr=1-5 Quote Link to comment Share on other sites More sharing options...
MamaSheep Posted April 9, 2009 Share Posted April 9, 2009 'Nother Aspie mom here. What you describe definitely sounds familiar here, and I'd absolutely encourage her parents to pursue a diagnosis and treatment. It's true that there is no "cure", but there are a gazillion things that can be done to improve things. My son is on a medication that helps him regulate his emotions better and has had some very helpful occupational therapy, physical therapy, and communication therapy. His behavior since he was 4 or 5 has changed dramatically. I used to seriously worry that he'd have to be institutionalized by this age because I would not be able to keep him from hurting himself or others. There are kids over at the ps who have in their file that they are never to be placed in a class with him because he's too scary. But he hasn't had a violent outburst in ages, and he's happy and friendly most of the time. When he's not, he can handle it in appropriate ways. He has friends who come over to play, he carries on good conversations, and is currently fascinated with sarcasm and figures of speech, which went completely over his head when he was younger. I can now totally see him having a career and family, which is a far, far cry from where we started. No, he's not "cured" and never will be. But frankly I'm not sure either he or I would choose a cure if one became available. He thinks differently than the rest of us, but in many ways that's a good thing, not a bad one. If he can manage the challenges, which he's doing great at so far, it might be nice to keep the benefits. He helps me see the world in a whole new, wonderful way that I'd have missed out on if I never knew an Aspie well. And there are definitely ways to help minimize the awkward and unpleasant aspects of Asperger's Syndrome and to enhance the wonderful parts. The earlier you start, the better. Quote Link to comment Share on other sites More sharing options...
Jennefer@SSA Posted April 10, 2009 Share Posted April 10, 2009 (edited) of an Aspie who would *strongly* encourage your brother to have her evaluated. We had our ds7 evaluated by a Developmental Pediatrician. Before that diagnosis we did OT, gf/cf diet, feingold diet and are currently starting this social skills curriculum at home: Social Skills for Aspies This has been my favorite book to help me in my journey: Complete Guide to Asperger's We are about to take ds to a neurodevelopmentalist later this month to start on a course of therapy that we are very hopeful about as well. There are many, many things that can be done. It is just hard to get to a place where you as a parent are ready to accept that your child really has something going on. I wonder if that's a huge part of your brother's hesitation. I know it is for so many. Good luck and I your niece is fortunate to have you in her corner! Edited April 10, 2009 by Jennefer@SSA Quote Link to comment Share on other sites More sharing options...
Wyndie Posted April 10, 2009 Share Posted April 10, 2009 So there ARE things that can be done for it...treatment and therapy and such? I mentioned to my brother about the asperger's and his response was "Well, there is nothing we can do about it." What he means is that there is no medication for it and you can't cure it so it's not worth exploring. :confused: I have three children recovered from ASD. Recovery is not the same as cured, FTR. I highly recommend he read "Healing the new childhood epidemics" by Kenneth Bock http://www.amazon.com/Healing-New-Childhood-Epidemics-Groundbreaking/dp/0345494512/ref=sr_1_1?ie=UTF8&s=books&qid=1239346303&sr=1-1 While I do not think every child will see full recovery, there are many natural things you can do to help a child who struggles so. Therapies are wonderful, we've done them ourselves, but sometimes there is a root cause and if these causes are addressed, the child can see relief from symptoms. HTH Quote Link to comment Share on other sites More sharing options...
skaterbabs Posted April 10, 2009 Share Posted April 10, 2009 My boys are both on the spectrum. DS #1 (if we were to both going through the hoops for a dx) would definately qualify as Aspie. DS #2 is High Functioning (HFA, aka "PDD-NOS" or Pervasive Developmental Disorder-Not Otherwise Specified), but doesn't qualify as Aspie. The difference, according to the neuro we saw, is that HFA kids tend to have a language delay of some kind. Aspie kids tend to hav precocious language development. *shrug* For us, there isn't much in the way of treatment. The treatments are there, but our insurance considers Autism to be a learning disability to be dealt with through the school system and the school system considers it a nearo issue to be dealt with through the health insurance. :glare: Either wya, we're stuck paying out of pocket for treatments that we can't afford, so the kids don't recieve. :rant: Quote Link to comment Share on other sites More sharing options...
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