Finding Ourselves on the Autism Spectrum

Figuring it out

I just figured something out.  I experienced one of those “lightbulb moments” that don’t come nearly as often as I’d like.  I just saw the relationship between a particular behavior pattern of mine and the situation in which I find myself living each day.  Kind of like figuring out that I’m on the spectrum, this doesn’t really change the nature of me or my situation.  But suddenly my frame of reference has shifted, and somehow that makes a difference in how I feel about things.

I’ve always been very much a “live and let live” sort of person.  Not only do I not feel a need for others to believe what I believe or act as I do (provided they aren’t hurting anybody), but I actually think it may be necessary and important for them to believe or do something entirely different.  We are each unique individuals with different brain chemistry, skill sets, belief systems, and life experiences.  What works for me may not work for you at all.  We may be at different points on similar journeys, or we may be on different journeys entirely, since we all start in different places.   I enjoy sharing with others and having them share with me so that we can possibly benefit from one another’s different perspective and insight.  I really don’t feel a need to decide for someone else what they should think or how they should feel.  Mostly.  Except there’s this thing with my kid.  

Once again, I don’t feel a need to insist my kids embrace my personal belief system.  It keeps evolving, anyway, so it’s not like it’s something they could adopt and be done.  And I don’t get to decide that for them ultimately, anyway.  I share my views with them, but I also let them know about other people and others ideas.  Whatever decisions they make, I’d like them to do that with information and not out of ignorance.  And I share ideas that I’ve personally found helpful in terms of managing conflicts, dealing with difficult feelings, and coping with physical issues like sensory overload without necessarily expecting that they will adopt them – I can only hope.  I feel pretty good about all that.  But I seem to have this huge problem accepting my kids’ negative feelings.  And I think I’m starting to get why.

I can remember getting really annoyed with my mom years ago – prior to my son’s diagnosis – when she suggested I was too concerned about making my then-only-child happy.  I considered myself too evolved to try and control another person’s feelings.  Except, I learned later that she was right.  I don’t just want for my kids to be happy.  On some level I need it, or at least feel like I do.  And I think maybe it all comes down to one underlying belief:  that feelings signal something needed to be fixed, and I’m the one who has to fix things or they won’t get fixed.

My husband once called me “Annie Sullivan”, referring to the woman who first helped Helen Keller to communicate.   At that moment I had ten of my fingers on one of my son’s and was showing him what he needed to feel in terms of pressure in order to operate the control for a toy racetrack that was frustrating him.  Hubby had tried unsuccessfully for a while, but I had an inspiration and tried a different approach, and it worked.   That’s happened a lot over the years.  I’m not the only one who ever has an important insight, but the great majority of the time, when something about my enigmatic spectrum son isn’t working and everyone else, including him,  is out of ideas, I’m the one who gets things moving in a positive direction.  It’s my job.  And the ability to do that gives me feel a sense of specialness and purpose.  It’s become a big part of my identity.

I remember actually praying once for God to please provide whatever I needed and to change me into whoever I needed to be in order to help my spectrum son with all his difficulties.  No conditions.  Just give me the tools I need to do the job and I’ll spend the rest of my life doing it.  And to at least some extent, that has happened.  I’m constantly tuned in to my son and to any helpful instincts I might have about what is going on with him, and I am continually being brought into contact with the very people who can help me with whatever situation I happen to be facing at the moment.  I am open to good ideas coming from absolutely any direction, so I recognize lots that come my way.  I see more every day how my son and I are actually alike however differently our issues may sometimes manifest themselves, and that insight helps me to see what others often miss.  I’m doing what I was put here to do, and I feel truly needed.

The downside of all this is that I feel very insecure when a problem arises that doesn’t have a clear remedy, or when I know I am not functioning at my best, because I feel like the pressure is on me to find a solution and to find it quick.  Because that’s what I do.  And because if I don’t do it soon, the problem may grow bigger, and the consequences may be more severe.  The clock is ticking.  Will I find the right button to press?  What will happen next if I take too long?  Why does no one else seem to see that any decision we make has further implications?  However I choose to handle this, down what road will that decision take all of us, and what will we face along the way?

Because of my own spectrum issues, I find the unknown to be extremely disconcerting, and I tend to obsess over anything I feel has gone wrong in the past or might go wrong in the future.  I have the impression that I feel pain out of proportion to what others seem to do over a given event or circumstance, maybe in part because I’m feeling it before, during, and after whatever actually happens.  I carry the pain with me through time and can resurrect it full blown at a moment’s notice even after it appears to have faded.  I’ve seen how things can go wrong in our own lives firsthand, and that doesn’t even begin to touch the impressions made on me by stories I’ve heard from others.  So when someone tries to tell me it will all be fine if I just don’t worry about, I get very frustrated, because I know there’s a good chance that it REALLY WON’T.  At least not according to any definition of fine that works for me. 

So what all this leads back to is that frequently when my spectrum kid is out of sorts or having an issue – or even when another family member is significantly off balance ( because in my mind everything is connected, and because we all affect each other so much) –  I initially become anxious.   I overreact.  I add stress to an already stressful situation.  I sense a problem that needs fixing, when the truth is that somebody is just expressing a feeling or bumping up against a challenge, both of which they should be able to do without having to worry about how that impacts me.   It’s not what happens all the time, but it happens a lot.  We regroup and get a handle on things later, but an impression has already been made that grows deeper each time we end up there.

So figuring all this out doesn’t really fix this particular problem.  But if I can see it and how it came to be, maybe I can start to recognize when it’s happening, instead of being caught completely off guard and wondering how I ended up there again.  And maybe I can make a better choice in how I respond.  At least I can know that I have a choice.

Bless all of you who are sharing your journeys, and thank you for allowing me to share parts of mine.  It truly makes a difference.

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Comments on: "Figuring it out" (23)

  1. This is really great insight. I do this to an extent too. I was the only one who recognized any of the conditions my children with which my children were ultimately diagnosed, so I feel an extra responsibility to be on hyper alert. 🙂

    • Thanks, Laura.

      I think I’m feeling this even more now because of the change in schools and dealing with all new people. They are understanding and supportive, but they just haven’t been through some of the difficult moments that at least some of the folks at the previous school have, and they don’t have that intuitive sense of what is needed.

      On the positive side, my son is getting more opportunities to learn to advocate for himself and to explain his point of view, and those skills are really valuable and worth developing.

      It’s hard to find a balance when his ability to handle things keeps shifting 🙂

  2. Diane,
    I can see where those senses can get you in trouble if someone really just wants advice or to vent, but really wants to solve the problem themselves. Still I think it is great that you can sense there is a problem. Relying on your senses can have many positives too although I get that it can cause anxiety.

    I don’t really think I have Asperger’s because my singing is way too pitchy and I’ve never been able to hear as well as my daughter, nor do I have issues with food, smell, etc. that she does, but I get the sensing others emotions as I can sometimes do that. Although, I think I rely on my dogs to help me sense things. They are the best judges of character I know. Sometimes I think I’m better as picking things up from them than from people. Does my connection with animals give me Aspie traits? Yep you bet!

    I think my husband and I both have Aspie traits, but then many of the quirks of autism spectrum are totally wonderful quirks that make for successful people and loyal friends. Thanks for sharing your story and for reminding me of my own similar quirks.
    Aloha,
    Sue

    • Hi, Sue.

      I agree that a lot of Aspie traits are very good qualities to have 🙂

      I think a lot of where I get into trouble is when my kids are the ones who think they can’t handle something when maybe actually they can. With my spectrum son, it’s really tricky to figure out what he’s going to be up for on a given day. If he’s ready for a challenge, I am a very enthusiastic supporter.

      When he’s not wanting to deal with things (which happens a lot), it’s hard to know when to push and when to back off. I can sense this better when I’m in a calm, relaxed state myself. It makes me anxious when I am confronted with a situation and I’m not already in an optimal state of mind, because then I don’t have access to my instincts, and my instincts are what I trust.

      There’s no rule book for what to do at that point. I generally end up giving a shot at some moderate pushing and see what reaction I get. Gauging the reaction helps me to find my way when I don’t know what else to do and others are looking to me for guidance. Sometimes we don’t know how much we can handle until we feel we have no other choice.

      I really hate the pushing part. I’ve always wanted to be a mom who lets her children find their own way, and I ended up with a kid with navigational difficulties 🙂

  3. I know that feeling of “needing to be needed” and being the fix-it person. It probably accounts for why my daughter’s entrance into the teenage years provoked such a crisis in me. It’s not as though I had to let go all at once, but at some point, it hit me very hard that she was going through things that either she didn’t want to tell me about, or that I couldn’t fix even when she did. After all those years of intense child-raising and homeschooling, adjusting to her being at school all day and entering that phase of life in which she just didn’t depend on me so much was really hard.

    The thing I figured out, which might help here, is that I’m still very much needed, but it’s more like “need in waiting.” I’ve joked for a long time that my job has become to knock on Ash’s door, say “Hi, hon. Need anything? No? Okay. Going now.” And if I just concentrate on those few seconds, it’s awful. I feel obsolete. But then I realized that what I’m really doing is holding the space in the house for her to walk into when she needs support, or wants to talk something out, or wants to share something. It’s a critical job. I think our kids really need us to hold that space in order to feel secure, and it’s pretty much a full-time job, since it entails taking care of ourselves and being present to what’s going on.

    It sounds like you and I both need to know what our “job” is at any given time, and sometimes the job is just to create the mother space, you know?

    • Rachel, that was absolutely beautiful. I’ve printed it so I can keep it out in my workspace as a reminder for myself. I’ve tried in the past to explain this sometimes in terms of the analogy of a firefighter – maintaining the firehouse equipment and supplies, keeping fit and ready, educating people, and working on fire prevention – until there’s a need to handle an actual fire. I like the idea of a loving “mother space” better. It feels more like what I’m actually trying to provide. I’ve been feeling less than appreciated today, and this was a message I really needed to hear. Thank you.

  4. Diane,

    This is a really good post, full of things to chew on. Bobby’s like you; he can pull an event from the past into the present fresh like it just happened. There’s no dampening of emotional response. To a lesser extent, I can do the same thing on the big things. Bobby does it on the everyday things, so learning to understand that relative untethering in time has been a big thing in our house.

    • Hi, Kim.

      I like that phrase – “things to chew on” 🙂

      My oldest is this way with memories, too. He still has strong feelings about things that bothered or entertained him in some way long after the event has passed, and he can recall also specifics of an event if they made it onto his radar screen in the first place as it was happening. Not everything registers the first time around, so those thhings don’t make it into reruns 🙂

      For me, if I start down a mental path, I just keep going with full lighting, mood, and sound effects until I make a conscious choice to change direction or until an outside force acts upon me to bring my attention elsewhere. I can be re-experiencing something or creating a scene in my mind (sometimes a resolution I wish would have happened instead of what actually did) for a moment or for much longer. I don’t do it all the time, but it’s one of the things that happens if I don’t have someplace in particular to focus my attention.

      Having three kids and three cats, something usually comes along to snap me out of a reverie pretty soon after it starts, but I’ve been known to “wander off” at really strange times. My theory is that it happens when I’m not that happy with where I’m supposed to be at that moment 🙂

      My son has spoken to me of feeling like there are different channels in his brain. Some are fun, and some are unpleasant, but there is always something playing. Sometimes it’s reality-based, and sometimes it’s not. He said it was really weird when he was little, because the channel seemed to change at random, like someone else had the remote control. Now he says he has more control and can make choices about which channel to watch, but sometimes he gets stuck on a particular channel and has a hard time switching without help.

      I sense a post in here somewhere, but I’m too tired to manage it right now 🙂

      Thanks for sharing about Bobby’s experience.

  5. This really resonates with me! Firstly, the ‘re-living’ experiences with all the emotions: I suspect BB does this a lot, and it causes him a lot of grief, but he couldn’t tell me what was happening. Born2Bme wrote a very helpful piece that explained it to me. Secondly, the feeling that it’s my job to keep everyone happy – yes, that’s definitely me. I really like your analogy of keeping the firefighting equipment ready. I’ll let go sometime…just not yet 🙂

    • Hi. Thanks for sharing your experience with some of this. I’ll have to go take a look at Born2Bme’s blog today. I’ve been meaning to spend more time reading there, anyway. Do you happen to remember the title? If not, I’ll enjoy the excuse to wander there for a bit 🙂

      “Firstly, the ‘re-living’ experiences with all the emotions: I suspect BB does this a lot, and it causes him a lot of grief, but he couldn’t tell me what was happening.”

      My ASD son seemed to start doing this even as a non-verbal toddler. I was reading through a journal of mine yesterday and came across this: “got very upset when I went to leave him at school – I think I prolonged the leaving too long. I hadn’t even been planning on leaving, but there were only two other kids coming, so they suggested I run errands. When I got back, after only a half hour, he just smiled for a moment, then he ran over to get a hug and kept crying off and on for at least twenty minutes, sometimes waving at me like he was trying to talk about when I left and was waving ‘bye bye’. ” I was pleased at the time that he was communicating an experience to me from his day in the only way he could find. It wasn’t until much later that I realized he was revisiting experiences after much longer periods.

      I’m glad you like the firefighter idea. That’s what comes to me when I try to think of ways to explain my life to people who aren’t sharing this experience. I don’t know whether it conveys anything useful to them or not, but I enjoy the imagery.

      It’s hard to give up that role of keeping people happy – especially when you seem to actually have the ability to make a difference for somebody in a positive direction who doesn’t always have that ability themselves. I need to learn to separate that from general people pleasing for the purposes of avoiding conflict 🙂 I don’t believe any of it is an inherently negative thing. We just need to be conscious of why we do what we do. For me, it keeps coming back to a zen awareness thing.

    • BBsmum,

      I think I just found the post you meant, because I saw your comment there. I don’t believe I’m making any big outward gestures someone would notice. I’m pretty “controlled” most of the time, so maybe that carries over into flashing back. But I definitely catch myself mumbling things and changing my facial expression when I’m having one of these “moments”. And if I happen to flash back on something like a creepy scene from a movie or something disgusting I came across at home, I will cringe and tense up just as if I were having the experience in the present moment.

      My NT (mostly 🙂 husband actually does something related to that, too, with recent or upcoming conversations that he finds or expects will be particularly bothersome or upsetting, and we refer to it as “having a conversation in your head” when one of us catches the other doing it. His only seem to come with facial gestures as far as what other people can see, and they seem to be limited to time within a day or so, past or future.

      I don’t generally find any of my mental meanderings happening when my attention is focused on something in particular, which it is a lot of the time these days. But I do go to interesting places sometimes – in time, as well as space 🙂

      • Diane, your comments are really helpful. This is why I love hanging around on blogs written by people who identify as being on the spectrum (either self-identify or having a formal dx) because insights like this are so useful. Because BB finds it hard to explain his feelings, I need all the outside help I can get!

      • I’m so happy that you find things I say helpful. I don’t always get that sense from the people I live with 🙂 I do think we all benefit from getting the perspective of others who have experience with something and want to help.

        I’m trying to regroup after an afternoon that spun out of control on me, and your encouragement is improving my mood. Thank you.

  6. I can really relate to this post in several ways. First off, I am a total fixer. I feel like I need to fix everything all the time, whether it was my fault or not. I am working on it, but I have noticed it a lot lately.

    Also, my dad hated when we had any negative emotions. he would lash out in anger at us and never validated our feelings ever. He really made me doubt my feelings. Lately, after researching Asperger’s, though, I truly believe my dad has it–he has all the hallmark symptoms, and it sheds some light on things. Perhaps the reason he was angry with our negative emotions was because he didn’t know how to handle them or fix them, and he learned from his father how to be a tough guy and have a bad temper.

    Now, sometimes when my kids are upset, I have to stop myself from either brushing off their feelings or trying to fix everything. I am trying to just listen and validate more. It is so tough.

    ANyway, your post really made me think, so thanks!

    • Hi, Patty.

      Thanks for sharing your experience. It always helps to know we aren’t alone. I have such a difficult time in this area. I also tend to either want to brush off their feelings or to fix things for them. Listening and validate is so important and healing. It’s just so hard to do in the moment. Fortunately, my kids can be very forgiving.

      A while back I started reading a copy of How to Talk So Your Kids Will Listen and Listen So Your Kids Will Talk, and a great deal of it is about the healing effect of just letting your child express a feeling and letting them know that you hear what they are saying WITHOUT trying to fix or judge anything. This is completely counter-intuitive to me, because like the authors and much of their audience, I hadn’t experienced a lot of that myself, and my own spectrum issues don’t make it any easier for me to pick these things up on my own. I’ve managed to try this approach on some occasions, and the results are truly amazing, even with my spectrum son. I’m starting to see why that is, given the effect that blogging and commenting and receiving supportive responses is having on me. It’s still a struggle for me to stop and remember to try this during a difficult moment, and plenty of times I forget and have to deal with the consequences. There really is no negative to this approach. If it isn’t completely achieving the desired effect, at least I’ve made a positive step, and I haven’t done any harm. I’ve never really gotten much farther in the book, because I’m still trying so hard to get the hang of this part 🙂

  7. Diane,

    I’m right there with you, panicking at the thought that things are going to get way out of control really fast if I don’t step in and make it better now! The worst is when my husband is with my son and I interrupt with how I think he should be handling something. (While there are times he could use guidance, most of the time it works out fine and they have a good relationship to fall back on if they aren’t always on the same wavelength right away.)

    I think that’s why it’s been so hard for me to relax with him at school, too, I get worried that they aren’t responding to what he needs or supporting him the way they should. And I project that ten years into the future and feel like it’s the end of the world!

    I think what you said to me in a comment earlier about people’s judgments bothering us only if we agree with them in some way might be analogous here. Do you think we are motivated we are to find a quick solution relates to how upset we would feel if we were having that problem ourselves? (Just a thought that occurred to me; I haven’t really thought it through completely yet.)

    • Hi, Aspergirl Maybe.

      You gave me so much to think about catching up on your blog yesterday that I haven’t found time to create any posts of my own 🙂

      We have so much in common. I’ve had my share of times interrupting in order to try to fix how my husband is interracting with my son, especially when I can see everybody’s testosterone kicking in or that my NT husband isn’t reading something correctly about why my son is saying or doing something. A good friend pointed out to me a long time ago that my husband has to learn from experience how to interact with our kids, just like I have. He may not always do or say things the way that I would the first time through, but they need to have their own relationship, and it is by and large a really good one. I interrupt less these days. Mostly I try to share insights with my husband when we’re off by ourselves. I also sometimes share my husband’s point of view with my son in the same way. Still, there are times when I do jump in just long enough to point something out in different words to one party or the other in the hopes that it will help them to understand each other better when they seem really stuck. I have to keep examining my motives when I do that. Sometimes it just doesn’t feel like they are going to get there on their own.

      “I think that’s why it’s been so hard for me to relax with him at school, too, I get worried that they aren’t responding to what he needs or supporting him the way they should. And I project that ten years into the future and feel like it’s the end of the world!” That SO sounds EXACTLY like me. Every event becomes the start of our “road to destruction”. For me, as I’m mellowing slightly with age, maybe it’s more like our “detour through destruction”. I have a basic belief that we will find our way in the end, but I have guilt about causing us to go off course, I have a lack of faith in my ability to handle the extra stress of finding our way back to a better road. Also, my son is 15 now, and I feel this incredible pressure to help him to keep up with his peers. They will all be going off to college in just a few years. I honestly don’t know what we’re going to be doing – my son or myself. And I don’t know how any of that will affect my younger kids.

      I like your comment at the end here. I have to think about that some more. It has occurred to me more than once that I get so frustrated at my son’s level of difficulty at least in part because I’m supposed to be so much better equipped than he is, and it’s all been so difficult and painful for me. How is he even supposed to manage? I just keep telling myself that the world is evolving and learning, and things will keep getting better, even if it’s a lot more slowly than I’d like. It’s how I sleep at night.

      BTW, speaking for myself, if I have to think things through completely before I write anything down, I’m probably not going to have a lot to say 🙂 Writing is part of what helps me to process things. I’m always happy to hear your views, fully-formed or otherwise. They help me to explore my own and to feel motivated to share ideas of my own that may resonate with you or someone else.

      I seem to have found my role in the blogworld as queen of the really long comment. I’ll have to try and turn some of these into my own posts at some point, although I have no idea when I’ll find the time 🙂

      • I can’t stop laughing at the “queen of the really long comment.” I love it!

        Following the thought about our kids managing, maybe part of it is stress of feeling like the only one who really “gets” them, combined with the fear of what will happen to them if we aren’t around for some reason.

        Hmmm.

        Have a lovely day, Queen Diane!

      • OK, now that you mention it, that is kind of funny 🙂 Thanks.

        I know exactly what you mean about feeling like you’re the only one who really “gets” your kid. It’s great to be needed and to know you really make a difference, but that feeling that they wouldn’t be OK if something happened to you – even temporarily – can be overwhelming.

        I’m going to try for the lovely day tomorrow. I appreciate the sentiment, but today has already become a bit much. All the problems that have come up this afternoon have worked out one way or another so far, but the accumulation is getting to me. Maybe I’ll write about that tomorrow. Too many activities still left tonight, and my kids are yelling at each other about something. Sigh.

        Have a good evening.

  8. Okay…so your following words describe me perfectly….and it’s so good to find people that I can relate to and seem to understand what’s going on inside…thank you!! 😀 Chloe xx

    ” I find the unknown to be extremely disconcerting, and I tend to obsess over anything I feel has gone wrong in the past or might go wrong in the future. I have the impression that I feel pain out of proportion to what others seem to do over a given event or circumstance, maybe in part because I’m feeling it before, during, and after whatever actually happens. I carry the pain with me through time and can resurrect it full blown at a moment’s notice even after it appears to have faded.”

    • Hi, Chloe.

      I’ve been enjoying some more of your poems, even though I can’t always think of a worthy comment 🙂 It’s hard to find words sometimes.

      I think it helps all of us to know there are others who feel some of what we feel and understand our point of view. It’s so nice to hear from you. I’m very glad we’ve met.

      • Hi Diane – no worries about leaving comments…there’s no obligation at all.

        I’m glad we met online too 😀 Hope you’re having a great week xx

  9. […] my Figuring It Out post, I wrote about my difficulty in accepting negative feelings in my kids.  I had come to the […]

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