Originally Posted by Momtoelandandy
I do also. I have a five year old w/ no formal dx, but the school system suspects Asperger's. Right now they say pdd-nos. We are doing biomedical interventions for him. Just began chelation. Our main struggle is his fragile emotions and temper. Lots of ODD issues I just do not know how to handle! Any advice???
So far just hoping it will go away with treatments...
Wow, does that sound familiar!! I have a nine-year-old with pdd-nos, verging on Aspergers, and a friend of mine has two with identical behavior patterns.
Hunter's temper was so bad we gave that persona a whole different name. He loves his name, so when he acted out we told him that Hunter didn't act like that at all and it must be Zelbert (the angry alter-ego) who was throwing the tantrum. Before we did that, he was absolutely uncontrollable; the first time we did it (his stepfather's idea), he was so shocked that after getting even madder because we took his name away, he came back out in five minutes -- at which point we hugged him and told him how much we loved and
liked Hunter, and that we loved Zelbert but it was very hard to like him. It's taken years, but he can now control his temper.
The fragile emotions, I think, were largely due to a lack of social interaction. We moved to a neighborhood a year ago with a park literally in the backyard and lots of kids right around his age; he's now much happier and more self-confident, and has in fact developed into a leader of the kids his age and younger because he comes up with all the cool games.
We still sometimes have the potty-training issues, though that is getting better as time passes.
We didn't do any medical intervention, though we did change diets to include fewer cookies and more fruit. He takes vitamins too, but nothing fancy. I watch what he eats to make sure he gets enough protein and healthy food; he tends to skip meat, which anecdotally seems like a common thing among autistic kids.
Structure is good; we have a very good school system here that has made a huge difference. He hasn't had an outburst in school for about a year, and though he is a long way from fully mainstreamed, he is getting closer and closer to it. Where two years ago he tested off-the-charts for math and patterns and at zero for verbal skills, he's now testing high in everything. The school psychologist took an intense interest in him after observing some of his behaviors. She thinks (and I'm not inclined to disagree) that he is at least a savant with things like codes and memory. He does some wild things in that area that just blow my mind!
Compare that to his school in Florida, where he was so uncontrollable he was almost feral at times.
What has helped me is the gradual recognition -- and then some informal testing to prove to myself -- that I had exactly the same problems he has when I was a child, sans the temper outbursts. It made it easier to catch what he was reacting to when he crawled under his desk, for instance; they called me in to school one day because he was getting under the desk and growling. I knew immediately that he was overwhelmed by something, and that he needed to do the kid equivalent of rebooting; so I walked in and covered his head and body with my heavy coat and sat down next to him. After about five minutes, he calmed down enough to talk through the coat, and a little after that he told me what was wrong. Once he started talking, he became cheerful again and went back into class.
The OCD -- yep, we had that too. It just took constant redirection. He needs to get used to looking you in the eye when you talk; that focuses him. It can be overwhelming for some autistic kids, though, so if he fights it try holding his hands or cutting out outside stimulation (television off, fans, off, lights off, people away -- basically as close to a blank empty room as possible) until he gets used to responding to you. If the OCD is really bad and he can't refocus, you may need to actually medicate; though I hate medication it is sometimes necessary. Try EVERYTHING else first. Autistic children need to be retrained, and the medications can sometimes get in the way of that.
Hunter was OCD with Yu-Gi-Oh cards; he would always default to the cards when he had to interact and didn't want to. He also would get very upset when his routine was upset -- rough for a military kid!
Pick up Temple Grandin's book, too -- I don't remember the name, anyone out there have it? Oh, it's
Animals in Translation. My copy's loaned out. It will tell you so much about how autistic kids see the world!! She's a weird lady, but it's a weird with a real charm to it.
Autism in any form
never goes away. It is a neurological wiring issue. I always knew my mind worked differently from everyone else's, but I never understood why; I just put it down to being freakishly smart. Now I know: why I didn't pick up on social signals; why I didn't care for the same things other girls liked; why I got totally obsessed with Robin Hood and, later, Indiana Jones; why I had bathroom issues and no one else did; why I had absolutely no common sense.
All that social stuff that most kids pick up through observation, a child with autism must learn through practice and study. The profundity of the autism will dictate how basic you have to go. High-functioning like my son and I mostly need to learn body language cues and how to recognize physical and verbal responses to what we do. Lower functioning autistics will have to start at more basic levels, like learning to focus on a single person who is speaking to you rather than the spot on the wall, and how to tune out all the extra background stimulation -- sometimes as simple as the hum of an air conditioner, or of a fly.
A lot of his frustration is probably that he doesn't understand the feedback he gets from the rest of the world, or he is not getting feedback that he reconizes as feedback. Watch what he wants, and, while retaining structure so he knows something is expected of him, respond to him in ways he can understand. For instance, my son's a snuggler. I let him snuggle as much as I can, and talk to him whether he seems to be listening or not; he's always listening at that point. I will also seek him out at times, and instead of talking to him face to face, I'll sit down with him and put my arm around him and talk while he's snuggling up against me.
Bedtime stories work really well for me as a reward, especially when accompanied by snuggling. Hugging him sometimes helps when he's upset -- just holding him really tightly when he's upset, even if he struggles. (Read about Temple Grandin's hugging machine -- that will freak you out!) Put together a robust reward system. Negative reinforcement doesn't work well with autistics -- they don't understand it. But they're just starved for positive reinforcement; there seems to be a certain amount of uncertainty in the early years that quickly turns into a lack of self confidence. Positive reinforcement helps offset that.
I was really, really lucky; I fell in with a group of peers many of whom had autistic symptoms -- SF fandom, anyone? Then again, I always wanted to be a writer, so I forced myself to learn how to describe all these verbal and physical cues in words. When I could recognize them in words, I could suddenly recognize them when I saw them. It took years. I'm trying to make it easier on Hunter, and I think I have succeeded. But it is a struggle every day.
Where you are right now, that's a really hard place. But you have a diagnosis at an early point, and that's a start (get a formal diagnosis as soon as you can -- autism centers are opening up all over the country). Learn everything you can about it, and look at it as a difference, not a problem.
The problem isn't your son; it's really that most other people in the world function differently from him, and they expect something different from him. The blessing of autism, though, is that once you have learned to function in this alien world you have a different perspective, a different way of solving problems, and often a brilliantly active imagination. Temple Grandin turned it into her dream career. Your son can do that too. Autism doesn't mean that you give up on the future; it often means that your future is blessed.
If your son has siblings, don't leave them out. Teach them how to interact with him more easily, and listen to them when they tell you what works; kids pick up on these things faster than adults. And include them in the reward system. They'll feel left out very quickly if you don't.
I know there's more, but that's all I can think of right now. Do remember, it's not the end of the world. I sometimes wonder if autism is an evolution that we are struggling through, it's becoming so prevalent. But then, that might just be my natural arrogance.
Jamie
Anyone with an Autistic child?
We will definately have to try that. Elliott will be mainstreamed into regular kindergarten w/ a part time aid this fall. I am so nervous. We have the potty training pretty much down (he doesn't like to flush or wash hands). But he complains that the room is wobbly and he has to start over and he can't walk. We call him noodle legs. Any clues as to why he does that. He also HATES to go to sleep. I try to equate it to the computer going to sleep so it can take in more information or a battery running out of power and needing recharging. He seems to like that (he's so into technology). Still he screams at bedtime.
! Email me personally if you want -- do you know how to do that? I'll hold your hand as long as you need it. But so will this board.
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