Doctors and scientists can most help children with autism by sharing their interests and expertise to form a team approach to improve the lives of children with autism.
This review article describes a new way of thinking about autism. The author notes that while autism is common, doctors lack good tools for diagnosis and good treatments. Many doctors perceive borders between medical knowledge and therefore specialists such as psychiatrists, psychologists, neurologists, and pediatricians do not work together to help these children. The author calls for a paradigm shift that will improve how doctors diagnose and treat children with brain problems such as autism. He suggests bold changes in training, research, and increased efforts to work together across specialties.
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PDD-NOS Repetitive Behavior
Aug 28, 2011 by Claudia CellaI'm looking for guidance. In case of a child with PDD-NOS that shows repetitive behaviours - such as playing the very same scene of a movie over and over - is it advisable to make him stop by using a distractor or negotiation or whatever works with him, or is it better to just let him watch the movie the way he likes?
The boy I have in mind is 7. He has been working with a neurologist, a psychopedagogist and a neurologist since he was diagnosed at 2 and has developed good social skills. He attends school, has friends, is a very calm, loving boy. He´s a happy kid. He usually has some repetitive behaviours but there are days that for no reason at all - at least to my knowledge - the intensity of the repetitive behaviours increases. Instead of playing with his brothers like he usually does, he may spend a whole afternoon watching the same 10 seconds of a movie, normally a funny part that makes him laugh.
So, is it ok to let him do that or should I find the way to make him stop?
Thank goodness THAT'S over!
Jul 14, 2009 by AnonymousBastille Day. Also, visit-the-neurologist-day. Woo-hoo.
I do not understand what it is about these children that they absolutely CANNOT shut their little mouths for FIVE MINUTES while I talk to the neurologist. They were good and well-behaved until she walked in the room and that was it! They were acting like they do when I’m on the phone: like I’m standing around, doing nothing, waiting only for them to make some request of me. I broke it down, and every minute I get to spend in this doctor’s office costs $25. I had to ask her to repeat herself more than once because the kids were acting like we were at the park instead of the doctor. Then, after I finished my disjointed and frequently interrupted conversation with her, she dropped a bomb: She wanted Thomas to have blood drawn to check his liver and kidney function, and also a CBC.
I have lost count over the past few days of how many times I have told Thomas that there would be NO SHOTS at the doctor. Technically, I was right; there were no shots. But somehow, Thomas didn’t see it that way. The doctor told us that we could just come back tomorrow or the next day so that we had time to prepare Thomas, but this hospital is a good hour away (on two expressways that are both under construction) and I decided to just bite the bullet and get the blood drawn today. What jolly fun we had! Actually, the phlebotomists thought the kids were both hilarious. Thomas sat on my lap and screamed his head off while Hayley held her hands over her ears and said, “Mommy, this is CWAZY!” When they took the needle out and slapped a bandage on his arm, they offered him stickers and he said, “But I wasn’t well-behaved! I don’t deserve stickers!” We left the lab as both techs were doubled-over laughing.
Anyway, Thomas did a lot better with the neurologist’s exercises than he did last time. He successfully completed almost all of the things she wanted him to do which is a great improvement. We decided together that he should try an increased dose of Strattera, moving him up to 18 mg from 10 mg. We’re going to stick with the current dosage of Clonidine because he hasn’t gained any weight since his last appointment, which is good. A side-effect of Strattera is weight gain, I guess.
I just wish they would behave at this doctor’s office. No matter how I threaten them or try to coax them or cajole them beforehand, NOTHING works and they’re always a pain. I wish I could see this doctor without Thomas (or Hayley) having to be with me. I guess it doesn’t work that way.
In my last blog I mentioned that I was trying to get Thomas to do some writing over the summer. We did have a successful “writer’s workshop” about a week ago. We all sat down and drew a picture and then decided what to write about it. It took a lot of waiting and asking pretty-please to get Thomas to sit down and do the thing, but once he sat down he drew a nice picture of several cars on a street and then wrote – mostly by himself! – “there are 5 people in the cars.” I was so proud of him that I wanted to scan the paper into my computer and e-mail it to his teacher. In the end, I decided to leave her alone and let her have her summer. I was so tickled that Thomas even seemed to be happy with the whole thing because of my favorable reaction. We’ll try again soon. It’s just nice to know that Thomas hasn’t forgotten how to read and write since school got out. Actually, he did a much better job than he used to do in school every day, writing most of the letters and sounding out most of the words himself.
While at the doctor, we got her to sign a letter I drafted for anybody at Disney World who might want to see it. It outlined the reasons why Thomas can’t be expected to stand in long lines or be around people for too long. Really, the reason we’re going to get the Guest Assistance Card for Thomas is not for his own comfort or our sanity. It’s more for the comfort and sanity of innocent people who might be standing near us. I shudder to think of what might happen if we encounter metal queuing-area fences. If he’s got anything in his hands to whack against the metal, there will be no survivors. Anybody in line with us will be doomed. In fact, I’ve decided that’s a good thing to say if there are any rude looks or inconsiderate comments from any other patrons in line while we move modestly up to the front. “Trust me buddy, you don’t WANT to wait in line next to this kid! Wanna read the letter from his neurologist?” I’m sure everyone will be perfectly courteous and understanding.
We’re still swimming as often as we can and trying to fill up the kid’s summer days with fun activities, but it’s hard. The weather (I know, again about the weather!) has not been consistently warm or sunny, or I have to work that evening or we have a doctor’s appointment…it’s always something. We should (God willing) be done with doctors until January, so that’s good. Well, except for the pediatrician. Hayley had a check-up last week (along with a Hepatitis A booster for Thomas…I’ve never heard so much screeching in my life) and absolutely REFUSED to pee in a cup, so we’ve got to give them a sample sometime.
I’m not fooling anyone, least of all myself. It’s never going to get done, and I’m not making a special trip to the doctor with Hayley’s urine so they can dip a stick in it and tell us that all’s well.
Summertime blues
Jun 30, 2009 by dankohnSummer drags on, but I have just realized that school will start again in less than two months with absolutely no improvement in Thomas’ attitude about starting first grade. As I’ve said before, Hayley is more than prepared, so we at least can concentrate our efforts on Thomas’ transition. I’m going to try to help out in both Hayley and Thomas’ classrooms this coming year so that at least he will have that constant. I’ll only be able to help out for half of the day, I am assuming, because I’m not sure that the first grade teacher will be as agreeable to having Hayley along as Mrs. H. was. Who knows…maybe she’ll be okay with it, but even so, that would be a long day for Hayley and a long day for me. I’m hoping to help out with Hayley one morning per week and Thomas’ classroom another morning of the week.
I have a lot of other personal things on the radar screen that have to happen before school starts, though. My sister’s bachelorette party and shower will be July 31 and August 2, respectively, and I’m hosting the bachelorette party at my house. I’m not sure where Jonathan, the kids and the dog will be that night, but it won’t be here. I’m pretty confident that those things will fall into place fairly easily. What I’m really biting my nails about over here is the trip to Disney. It’s looming very large on the horizon and I’m wondering if I can really pull this whole thing off. I tend to be forgetful about packing lists (which I’ve already started making and revising – like I completely forgot about pajamas for anyone, for instance) but I’d rather remember them now than at 30,000 feet. Does anyone else have this problem? Does anyone else spend the first few hours of a trip away from home trying to remember what you’ve forgotten? I just know I’ll be a wreck during the days leading up to this vacation. And it’s ten whole days long – plenty of opportunity to forget stuff. Can I actually do this right? Can I actually take my family on a vacation across the country involving airports, transportation and unfamiliar areas? I nearly left for my honeymoon without a single pair of shoes to wear – except the shoes I wore with my wedding dress. Imagine trouncing around Disney in a pair of white satin Cole-Haan pumps with big bows on the toes. I did look like Minnie Mouse, sort of, the morning after the wedding when I realized that we’d have to make a stop at home for sensible walking shoes. But it’s that kind of thing that always makes me sweat. One good thing is that I never forget anything that’s absolutely vital like medicines.
When we went to Peoria this past weekend for that wedding, I realized that I sent Thomas along to Grandma’s house with only one pair of socks – the ones he was wearing. That wasn’t a big deal and Grandma just washed them when they started walking around by themselves, but still. I tend to forget things and it’s terrifying me. When it was time to get dressed for the wedding on Saturday, I had a horrible moment when I thought that I had forgotten to pack Jonathan’s suit pants. He would have had to wear his plaid casual shorts with a shirt and tie. Anyway, the kids had fun at Grandma’s and Hayley wanted to stay an extra night, but Thomas wanted to come home and we couldn’t impose on Grandma any longer than was necessary. We did have a nice weekend away although we were somewhat unimpressed with downtown Peoria. It was great to see my family, though. We always have a great time at family weddings. My family always asks us in these situations when we feel it’s best not to travel with the kids, “Where are your kids?” They ask in a manner like we’ve obviously forgotten them somewhere and should alert the authorities at once. I usually have some flippant response like, “Oh, they’re home with the dog.” Hilarity ensues.
Thomas has a neurologist appointment coming up on July 14, but I may have to change it because I usually work on Tuesdays and his appointment is at 3 p.m. Given how many minutes behind the neurologist is usually running, I would never make it for a 5 p.m. shift. Maybe I can switch it to a morning appointment. I’m not sure that I have a lot to discuss with her this time. I’ve given up bothering the doctor with complaints about how Thomas doesn’t stay in his bed all night. I’m convinced that it’s all behavioral because Hayley does it now too. I don’t think it has anything at all to do with autism. Life at home with the kids has been very trying lately, mostly because they fight all the time and the weather has still been not very conducive to getting out and having fun away from home. We were able to go swimming a few days last week, but that was it. Just getting away from the house for some diversion every day is a great thing, but it doesn’t seem like we have many good (inexpensive) options. They still love swimming, so that’s great. But even the park seems to bore them more and more these days. While we enjoyed swimming during the very hot weather last week, the weather has turned cooler again and rather cloudy with rain threatening every day. Tomorrow (as every Wednesday) is our shopping day which usually makes me break out in hives. It’s always a toss-up. They’re either good or they aren’t. Either way, we have to get more food into this house every week! But they fight in the grocery store too and I find myself having to exercise extreme restraint to not put them in a time-out in the glider chairs in the baby section. Sigh.
I’ve been trying to get the kids to keep practicing reading and writing, and I think I might pull the “homework” card on them. I might say that we have to finish homework soon – for school in the fall, so that they’re ready. I’m almost certain Thomas is not going to fall for it. Hayley loves to draw and write still, but it has always been such a struggle to get Thomas to try writing and reading. We’ll have to come up with some sort of reward system, I guess.
Like Disney World isn’t reward enough!
Mouse ears and back-to-work
Feb 24, 2009 by AnonymousI hate to say this, but I think that Thomas either has developed a tic on the Strattera or that tooth has GOT to come OUT. Mrs. H. has noticed it too, but she thinks that it is from absentminded tongue-pushing against that loose tooth. I don't know...it seems like he's pushing against it with his tongue but it's in such a tic-ish way that it's hard for me to tell what it's all about. Jonathan said, and I agree with him, that we'll have to wait at least until the first tooth falls out to see if it gets better. If not, then there'll be a call to the neurologist in which I am instructed to take him off the Strattera immediately. Bye-bye great IEP meetings and terrific progress. Hello, extra TVs playing in Thomas' head, keeping him from effective communication. I'm trying to stay optimistic but I'll be really bummed...rather, EXTREMELY DISAPPOINTED if the Strattera turns out to be off-limits like the Focalin, and for the same rotten reason.
My first day of work which will be strictly orientation is on Thursday. Yesterday as I was taking Thomas to school, he told me that he wanted me to go to work right away. How cute. We'll see how he feels on Thursday when I'm not around to step and fetch and carry for him and Daddy has to do all! We'll see how it goes. I know that Jonathan will be interested in doing his very best so that we can go on our Grand Disney Vacation that we are still tentatively planning for August. The children have no idea of the scope and scale of Disney. I ordered a Disney vacation planning video a while ago that I filed away until recently. We watched it on Sunday during lunch and the kids (especially Hayley) were glued to it. So was Jonathan. I have to confess that even I was taken in by it. If any readers out there have any advice on touring Disney with an autistic family member, we'd love to hear it. Or any advice in general would be great. We're still on the fence about the dining plan...we're thinking that we can do better in terms of how much it costs, but if anybody has tried it and has feedback, please let me know. When we called the reservation hotline on Saturday, the gentleman on the phone said that every single Disney "cast" (employee) member is well-educated on special needs kids. I can't wait to test that statement.
Hayley's been down with a cold this week and missed school on Monday. That's the first day she's missed all school year! Unfortunately for Hayley, the beginning of any illness is marked by an in-bed barf-o-rama and she was in my mother-in-law's bed on Friday night when it happened. We went to pick the kids up on Saturday and I've never felt worse for someone because of what my child accidentally did! The entire bed was stripped and somehow Hayley got vomit all over the bedskirt. My mother-in-law had to yank that bedskirt off from under her very deep and heavy mattress all by herself at midnight. I felt awful and did make her bed (including bedskirt) over for her while we were there, but even when Hayley's thrown up at home in her bed, I've never seen such a serious and far-reaching mess. Thomas has managed to catch the same cold, but he doesn't vomit nearly as much as Hayley, so he's just a little stuffed up. It's amazing how these kids deal with illnesses. What would have grown-ups flat on their backs for days doesn't affect little ones nearly as much. I guess the bigger we are, the harder we fall.
I can't see anything very important on our familial horizon except for me going back to work, something I intend to do now until I reach retirement age. It will be a big change for the kids, sort of. They're used to Jonathan being gone all day at work and I won't be gone all day. Just a few evenings during the week and some weekend days but we all know Thomas and how sensitive he is to any kind of change. Luckily, I can rearrange furniture when I want to or buy a new bedspread when the spirit moves me. It's lifestyle changes for Thomas that bother him. We just put new bunkbeds in Hayley's room and he loves them so much that he wants some in his room. My folks have one more set that perhaps we'll go ahead and take off their hands. We'll be able to sleep an army in this house, but what I'm more concerned about is one spry little six year-old jumping cowabunga-style off the top bunks. It hasn't happened yet, but we just got the things. We'll see how it goes. If he starts his very own "Circus of the Stars" in Hayley's room, then I think we'll be limiting him to just one bunk.