Newly Diagnosed

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Hi There, My son has been recently diagnosed with AS. Hes almost 11. I hadn;t really given it much thought until the last two years when he really started having problems with friends (he argued alot as a child with other kids, and at playdates would rather sit and chat with the mothers - guess I didn;t pick up on this).
I was just wondering if anyone else had any experience of fears and kids with AS. My son is afraid of alot of stuff, feels afraid in our house in case someone breaks in and takes me away, is afraid walking home from school alone (we walk with him but he won;t walk alone (about 3 minutes walk) in case someone kidnaps him, if he drops someothing on the ground hes afraid someone mite slip on it and get hurt, he worries that if he argues with someone they mite go and do something like jump off a cliff because he upset him.
I know very little about AS but I'm educating myself...
Any opinion.
Thanks.

From what I have gathered from reading, doctors and experience with my son (10 year old, PDD-NOS), most of these fears are caused by two things - anxiety and need for sameness. Many kids with ASD (Autism Spectrum Disorder) need things to be the same all the time. This could be their schedule, food, responses, route, etc... Does your son need things to be the same?

The examples you used sound like anxiety related issues rather than need for sameness. Anxiety disorders are common in ASD children. They can be related to ASD symptoms or a separate disorder. A professional should assess him to make that decision.

My son has similar fears with every day things. The only thing that has worked with him is explaining every step to him in detail. For example, going to the store causes great anxiety for him for a couple reasons. First he doesn't know what the weather is. He has extreme sensory issues, wind and rain cause him great discomfort. He worries about walking from the house to the car, car to the store. Second, he doesn't know if I will need to go to more than one store. Third, the store is always different - different people, different parking space, different distance from car to store, etc...

Just to give you an example of how I handle this - 8 am Saturday morning I will tell him we have leave to go to the store at 2 pm. I will tell him we will first go to Walmart on X road. There we will be buying X items which will take about X time. I will tell him the weather - if it is raining a lot we wouldn't go, but if it is raining a little I will tell him it is raining and that I will have his umbrella and I will drop him off at the front of the store. If we are going to multiple stores, I will explain the same for each stop hours in advance. Then I will explain all this to him again right before we leave.

It is tedious but if I don't do this, we will either never make it out the door or never make it from the car to the store.

I am also learning - we just got our diagnosis a few weeks ago.

Sometimes I think of this as if being on a balance beam in a world where everybody else either walks or just wanders around on the ground. The beam offers a "sameness" I seem to need and definitely want, and much different skills (or even fewer, as I sometimes see things) are needed on the ground ... and my fear, of course, stems from the thought of ever being expected, required or even forced to go there.



Great!

Thanks for that. I think you are def right. If I asked him does he have issues with change he'd say no, however there are various areas where he likes things to be the same ... he hates substitute teachers, and hates the beginning of the year when they move to a new classroom or when he has to wear his uniform to school on uni days rather than his tracksuit I have to tell him a few days in advance, so he doesn;t ahve a wobbly. (also has sensory issues and hates uniform) I guess I need to prepare better and maybe stick to better more predictable routine in our daily lives to make it same for him and so he knows what to expect. Maybe that will ease some of the anxiousness.
My son also hates the shopping and he gets so frustrated if I say I have to get a few things and end up with a basket full. I need to say what I mean so as to cut the frustration before it starts. Thanks again...

Establishing a routine and preparing him for changes should help. Just a couple suggestions.

Avoid build his fears by using 'scary' and 'afraid' when you talk to him. He relies upon adults to keep him safe and when they are anxious, it will make him worse.

Our daughter (AS, now 27 yo) suffered from anxiety for years until we went to a beach with a jetty made of van sized stone blocks with her friends. While they scampered over them, out daughter wailed of being scared. We helped her climb them and get across the chasms which separated the blocks and she became more comfortable until she was able to keep up with the other kids. We were impressed and proud of her ability to meet the challenge, but over the next weeks the incidence of anxiety issues were greatly reduced. We tried getting her to walk across a ravine on a fallen tree when her confidence ebbed and she conquered the obstacle and felt great about it. Again, the anxiety issues were minimized.

At about that time, the school's concerns were about her lack of focus and concentration. She loved animals, so we tried hippotherapy - therapeutic horseback riding. One can't ride a horse without focusing and concentrating. The penalty is a face full of dirt, so her ability to stay on task improved greatly. The program kept pushing the kids and she was soon jumping horses over jumps. The challenge was sufficient to give her the boost to her self esteem that was needed and she was able to use it to keep the anxiety in check. Downhill skiing offered the same benefit.

This may not work for everyone, but Aspies are known to perform better with positive rewards and the psychological boost they get from succeeding, particularly against NTs, seems to have lasting rewards.

My 13YO AS son is the same, although some things are changing for the better. He is no longer sleeping with a light on at night, afraid of what his imagination suggests might be hiding in the closet or under the bed. He walks home from school with no problem. I think these are simply the benefits of maturing. He sometimes mentions that he'd like to build a moat around the house, so I imagine there's still something going on, but it is not as pervasive as it once was.

This is a little off-topic, but going to the dentist or doctor was so bad, we decided not to tell him in advance since the anxiety level would reach the red zone from the time we told him and stay there until the appointment. I'm pretty sure he managed to distract the entire school once when he was dreading a visit to the dentist. Both have gotten better, unless he needs a shot or a tooth worked on. A trip to the podiatrist this summer for an in-grown toenail was dreadfully difficult, even if, afterward, he admitted that "it wasn't that bad". Anxiety medicine took the edge off, but didn't resolve the overall fear. What bothers me about the toenail is that he hid it from us until it got to the point where he knew something had to be done. We've tried to explain why doing that could have really bad consequences. I know he heard us, but am not convinced he'll change his ways.

My son would worry alot about stuff in advance too, and totally stress himself out. However Doctors and Dentists are not one of them. He couldn;t wait to get into the doctor to get the flu vaccine as he was terrified of getting swine flu (all the media coverage) - he did however question both doctor and nurse as to what was in it, why the nurse was giving it instead of the doctor, and if they were sure they got the dosage right!! !
I do tell him stuff in advance though because if I surprised him with something he wasn;t keen on he would definitley freak out. Its a tough one.