Sometimes I HATE my AS step-son

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What does Seth say about all this? I mean, the goal is to be self-sufficient, doing something you don't hate and being happy. How does he propose he get there?

He doesn't have to know today, but you might ask him a few questions to get him thinking in that direction.

My youngest son told me he wanted to be a travelist when he was 10. I asked him to define travelist and tell me who would he work for. This opened up a lot of possibilities and started more than a few discussions. He's in the Army now, traveling the world. Not what I would have picked for him but I know he thought about it for several years. He is a fine young man, studying to be a Geologist.

As a kid, I really would have really liked living on an island. I'm an extrovert who covets her solitude.

Step,

It really sounds to me like you are doing all that you can to be supportive to both your AS spouse and AS step-son and that you had been tireless in your efforts.

One thing that did strike me is not just the isolation (basically you and your spouse are "it" in terms of Seth's social life) -- but the grief and fear of loss. Seth has lost 2 people whom he had seen as "parent" and "parent figure" in close succession -- first the mother, then the uncle.

I'm wondering if part of his behavior is triggered not only due to his undiagnosed and unmanaged AS but also due to his fear of loss and grief. He now only has his father and you as his closest kin. There may be a lot of anxiety and acting out around this fear that maybe his father and step-mother will be taken away from him too. Only a clinical psychologist can get at the root causes to help with management, but this was something I thought about when I read through (all 4 pages!) of the post.

My best wishes for you -- hang tough.

JS

Yah, I don't know. When his special interest was vacuums, he wanted to own his own pet sitting/house cleaning business. When it was trains, he was dead set on being a train engineer. Now he still says train engineer sometimes, but it's more half-hearted. He really loves mechanical things and designing contraptions and is quite advanced and has said he wants to go to MIT ever since he was about 8 or 9 (not sure where he got that from!).

He showed my brother-in-law (who is a mechanical engineer) a design he created for a pneumatic trash compactor and my BIL was really impressed. We think that he has a real future in non-train related engineering and talk to him about needing to stay in Advanced Math, even though it's hard for him, because that track will be helpful for him if he decides to pursue that type of career in the future. We had him on the Lego Mindstorms robotics team and he was by far the most advanced in terms of designing robots for their missions and doing the programming, but he had to quit because his coach couldn't handle his behaviors and when his dad tried to stay with him during the working groups, Seth would get furious at him for cramping his style. It kind of ended in a huge blow-up. Seth does not know how to be part of a team or take other members ideas under consideration. He feels he has the best ideas and others should recognize that and go with whatever he has in mind and he gets really furious when others want to try different things. Seth wanted to go to the very first meeting for Lego Robotic, with his own fully designed and programmed robot. He thought everyone would be really happy about that, just couldn't get the fact that others would want or need a say in it.

And that's what worries me about future jobs, is that even if he's brilliant there might not be anyone willing to give him a shot at doing the things he loves if he can't learn to get along better with others.

By the way, I think I would have LOVED the job of travelist! That is so cute, and it's so great that your son is now getting to travel the world.

I think you are right that Seth is very worried about the possibility of losing either of us. He gets home from school a little before my husband or I get home from work and as soon as I pull up in the drive I see his face pop up in the upstairs window (our family room is upstairs) and seconds later, he will be magically out on the front porch waiting for me to come in. And then he really bounces around saying "I wonder when my dad is going to get home" until he walks in the door, and then he does the same thing with him, rushes down the stairs to meet him and give him a hug etc. It's kind of sweet but a little overwhelming to. Especially for my husband who gets flooded easily and needs a little time and space after work to decompress before he engages too much with the family. I've tried to explain that to Seth repeatedly, but he just gets so excited he can't contain himself, and it usually ends in my husband getting upset with him, saying angrily "can't you give me some space" which I'm sure crushes Seth's feelings.

It's like, we understand things intellectually, but that doesn't make it any easier, and doesn't help us when we get angry. Seth gets confused too. He's explained to me that it seems like everything is fine until suddenly we blow up at him for no reason. He doesn't get all the signals of everything that led up to the blow up. I get that's part of AS but again, that doesn't help us to not blow up.

As far as seeing a psychologist goes, I would really like for him to continue to get some grief counseling in addition to the OT type behavioral stuff but Seth says he does NOT want to talk about it anymore and refuses to see a therapist about it. I don't know, as a parent is it OK to force a child into counseling, even if they can not be convinced that it could help them?

Maybe the key is not 'talking' about it.

Many kids can't use language adequately (even NT kids) to process complex issues like grief and loss. Heck, we adults have a hard time "talking" through profound loss and grief, we can't expect children to express theirs the same way.

One method I thought about is using alternate modalities like art, music, dance, and play-based therapies. Don't talk this up like it's counseling or talk therapy -- it's really a way to express feelings using other approaches besides language. But I have a feeling this needs to be addressed. It is hard to suffer this kind of loss for even neurotypical children, let alone a child with AS who may need a different way to express his grief and anxiety.

This is where it's challenging living in what sounds like an isolated area where you may not have all the service options you may need.

If people reading this know of resources for parents -- please share it (I'm new to ASD parenthood)!

It reminds me of my son....Sometimes I have no choice but to actually blow up, I go as far as telling him explicitely "if you don't stop doing that right now, I am going to start getting mad at you, can you please stop before I start screaming, I really hate screaming...."
But nope. He doesn't get it... I have AS too btw, so sensory troubles don't help.

As for the therapist, you can force him, he's a minor, but i don't know if it would be beneficial to do so... My son sees a psychiatrist, and they talk about mathematics a lot lol... I don't even know why he sees him. I'm not sure it's very helpful, unless he's a very good autism specialist, otherwise he might start making him feel bad about his natural feelings and reactions to things, damaging his self esteem further... I personally don't trust psychologists very much, especially when it comes to autistic people.
I'm not sure they're trained to deal with that. I mean, they ask questions like "how does this make you feel", which is deeply private for an autistic person , and then draw inappropriate conclusions from your "abnormal" response...... Not sure psychology is a good choice.

This is a great idea. Seth isn't interested in art or dance at all, but he does love music and is really quite gifted on the guitar. Maybe we could ask him if he'd like to write a song for/about his mom and/or uncle for Hanukkah. That's another cultural issue in our house...Seth's mom and that whole side of the family is Jewish and he was being raised Jewish. That was really important to his mom. But Seth doesn't believe in an interventionist God and does not want to be involved in Temple activities. My husband and I are not Jewish either, not religious at all really, so it's hard for us to try and force him to be involved in the Jewish community, although we know that would have been very important to his mom. We are so clueless in many ways, as to what is the right thing to do. But I think keying into his feelings of loss through music might be a new approach worth trying. Thanks for the suggestion!

Oh, ediself, I LOVE the idea of just telling him point blank "if you don't stop doing that right now, I am going to start getting mad at you, can you please stop before I start screaming, I really hate screaming...." even though you say it's not very effective, at least he'll see it coming better!

As far as my location goes, I do live in an isolated area, on an island, but the population is not super small...i mean, there are some specialists here. I knew Seth had AS before anyone else, because I'm a researcher and I just kept googling all his behaviors until I found this site and then started reading books and articles and Seth is so textbook in everything that it was easy to come to this realization, though there may be additional things going on that I'm not aware of. Because of that, I have only sent him to child psychologist who specialize in autism spectrum disorders. He had a wonderful therapist and we saw her individually and as a family. Then one day Seth just decided he'd had enough and didn't want to go anymore. Now we're going to take him to a new doctor, a neuro-psychologist who specializes in autism assessment, in order to get the official diagnosis needed to get him set up with an IEP at school etc.

I haven't met with her yet, my husband is finally taking the lead on this and I'm thrilled, but he has his own timeline and I have to be patient with him as our paces are not the same and if I appear to be bullying him into moving more quickly, he tends to shut down all together. So, hopefully in the next month or so, we'll have more information to go on. My husband has just started to have conversations with Seth about how he interprets things differently than some people and that seeing this person may help him be happier in his life. Seth is willing to give this a try, but it is not anything related to grief counseling.

Anyway, I will report back how the "Please don't make me angry, you won't like me when I'm angry" track goes!

Last edited by Step on 06 Dec 2011, 7:41 pm, edited 1 time in total.

my son too, twice. he was briefly distracted by snakes but went back to vacuums. i was so happy when he decided houses were more interesting.

back on topic, the music idea sounds great!

I know, right? I mean, I can hold my own in a conversation about Star Wars, but comparing the suction to horsepower ratio between a Bissell Velocity Dual Cyclonic Upright and a Dyson DC41 Animal Radial Root Cyclone Bagless Upright...and you've lost me!

I had a bit of an "aha!" moment reading this. My son, like Seth, simply cannot read the body language or tone of voice which indicates that he should stop or reduce something he's doing. He is also then completely mystified and taken aback when, suddenly and without warning (as far as he's concerned) I am at the "end of my rope".

I recently had a conversation with my son's class teacher, who previously spent 10 years teaching in a specialised autism unit so she knows her stuff, about my son's tendency to repeat the same questions, statements, actions regardless of how many times I reply, respond, tell him to stop. She pointed out that visuals can be much more effective than spoken words so using cards with readily understood and previously agreed symbols can be helpful. She also suggested that I again try using social stories, but now involving my son in the writing of them, so that he can internalise and take ownership of the behaviours we're trying to encourage and reinforce.

Sorry, got a bit long winded there. My initial "aha!" was that you could try devising a system which will let Seth know that a situation is escalating, and so let it be nipped in the bud before frustration and upset are reached. You could get together when you are all calm and in a good mood, and work out a system which you all understand and think of images or symbols to use on cards. A kind of grading system. Let Seth decide what symbols would work for him.

For example, if I were to do it with my son, (and now I've thought of it I really should try it!), then the starting point of happy to listen and spend time with him might be a picture of a kitten, next one might be a grumpy cat - meaning less talking but not cross, then a few more stages with the final one which we never want to use being a picture of a roaring lion!

mine too and he would be mystified that i could get so upset so quickly (in his eyes). before we even got the AS diagnosis i noticed this and started giving him verbal ques "i'm starting to get bored with this topic", "i'm really bored with this topic, let's talk about something else" "i am not talking about this topic anymore today (or for two hours, whatever applied at the moment)" it seems to work most of the time for him.

when i say i noticed this before the diagnosis, i mean i had noticed at an early age that my son was very literal and tried to wrap my head and directions to him around his way of thinking.

I like the idea of visual cues but worry Seth would think that was "baby-ish"...as he's nearly 12. How old is your son? We do have a "safety" word. It's a word he can say that means he's feeling over-stimulated and needs a time-out. I have one with my husband as well. If either of us needs a discussion to end immediately, we use the code word. However, I don't use the code word to indicate to Seth he needs to break off communication temporarily. I'm not sure why that never happened. It's like, we have so many techniques in play it gets hard to remember all of them!

The literal thing is a big part of it for us. "Seth, could you pass me the jam?" "Well, actually it's not jam, it's jelly, the reason is that..." only this happens nearly every time I open my mouth. I try to speak very literally to him, but I also try to encourage him to use expressions and to try and understand that sometimes people talk in a kind of code where others are expected to get the "gist" of what they're saying without being corrected. We're still working on that!

this made me think of something that works well with wes, he tends to get very LOUD to where he is pretty much yelling when he talks. he doesn't like to be interrupted so we developed a hand signal, that way i don't interrupt his flow and he still can see what i want. maybe something like that would work.

If you haven't done so yet, I strongly recommend looking into wrap around services for both your step son and you as his parents. Your local county mental health service/agency should be able to give you referrals to who provides these services in your area. You need some backup from knowledgable autism professionals to both help you and your husband with coping skills as well as teach you and offer strategies for handling the behaviors you do not understand.

There have been some wonderful suggestions here but I get the impression that your problem is much bigger and deeper than a few online suggestions could solve.