Finding Ourselves on the Autism Spectrum

In a comment on my last post, Aspergirl Maybe linked a very useful letter, written from the perspective of a child with autism to family he is going to be visiting, that I’d like to share here:

http://joyinthevalley.wordpress.com/2010/12/22/holiday-letter-from-an-autistic-child-to-his-family-and-friends/

My response to her very thoughtful suggestion relates to an upcoming trip of mine to a family wedding, and it grew into a blog post of its own:

I think this type of letter could probably provide some enlightenment for some of my family members and even friends about specific issues relating to our situation, although I think they will be the ones who already listen and respect my needs and those of my family.  They are also the ones with attention spans long enough to read a carefully worded letter.  I do feel like it’s time to start sharing at least a bit more with them.

The Others:

There are some other family members who don’t generally give the impression of hearing me no matter what the subject matter.  They appear not to listen or read past the first few words I try to share, and I feel flustered enough around them that I know I take a lot of words to get across what I am actually trying to say.  I also don’t know how to deal with these people when they dismiss the things I do say because they believe they know better (on what basis remains unclear) and try to push me into making the decisions that they think are best.  I’m fine with making my own decisions and am not really looking for their input, but they give indications that peaceful relations are dependent upon my going along with what they think.  They often come across to me, and I believe sometimes to others as, well, “pushy”.   I don’t really know a nicer, clearer way to say it.    Nothing I say seems to make much difference, simply because they aren’t actually hearing anything I’m saying or are only taking in enough to facilitate them dismissing what I say, unless, of course, I happen to agree with them.

Most  family members just seem to know how these individuals are and to not be too bothered by them, although occasional scenes arise when strong tempers are involved.  These individuals are always kind to my kids, but they interfere with my parenting and me doing what I need to do for our particular needs, and that’s not OK with me.  The way they see it, they are just trying to help or to make things more fun, and it feels like they would take offense at any suggestion otherwise, because they also come across as very defensive.  I know there are lots of people like this in the world, but I don’t choose people with these personality types as friends.  I only have these few in my life because I’m related to them, and they are close to others who are close to me.   When I try to communicate my needs with these people and they don’t listen, I become very confused and frustrated, probably greatly out of proportion to anything that anyone else would find the situation itself warrants.

Communication difficulties:

I’ve run into some major difficulty fairly recently with trying to communicate with a particular couple of family members through writing.  Almost everything I said was misinterpreted, and trying to explain myself just seemed to make things even worse.  Even my attempts at apology and taking responsibility for the communication difficulties (this was probably not the best time to bring up the whole issue of thinking I might be an Aspergirl) were called irrational and passive-aggressive, which I found very hurtful.  It soon became clear to me that the only way to calm things down was going to be for me to just say everything was all my fault and to ask forgiveness without looking for anything in return.  It was really the only move I felt I had left.  It did the trick, and they calmed down and now appear to have decided we’re all fine again, but it left a bad taste in my mouth.  I’ve been working on my own forgiveness issues with regard to them, and I’ve let go of most of my anger, but I’m left with some serious trust issues.

Travel difficulties:

Part of the problem for me in having to travel to see family is that I have issues with the travel itself – joint pain, car sickness, separation anxiety from sources of comfort, and a kind of situational claustrophobia that comes from being cooped up in a car with four guys.  And that’s when everyone is getting along, which becomes less likely the longer the trip continues.  These difficulties leave me feeling very much out of sorts when I first arrive someplace and for a long while afterward.  I’m not exactly at my best for dealing with challenging personalities at that point.

Another thing that’s a problem for me in traveling is my concerns about sleeping arrangements and how we will deal with sleeplessness in myself or other family members.   To sleep sitting up in a car just doesn’t happen for me. (I once spent the night lying on the floor of a school bus on an overnight trip, because I was the only one who couldn’t get to sleep in a seat.  Yes, it was as gross as you’d imagine, but I was so tired that it no longer mattered.)  My kids only sleep in the car if they’re really exhausted and we’re driving at night.  Being able to sleep wherever we’re staying really does matter.   Sleep problems are an issue with all of us at some point or other, but here at home we always have other rooms available and can move around. Usually it’s just one of us having difficulties, but some nights it kind of turns into a night-time version of musical chairs, and it’s interesting to see who ends up where by morning. 🙂 I know for many people, they just need a place to lie down and stretch out and they’re good.  We’re usually more high maintenance.  Hubby doesn’t always get this part, because he can usually fall asleep anytime and anywhere, although staying asleep is sometimes another matter, and he’s often up in the middle of the night or very early morning doing computer stuff here.

When we stay away from home, things can become more difficult, because the extra rooms are usually occupied by sleeping people who would probably prefer to remain asleep.  Also, when we’re visiting with family, everyone wants to stay up late and has a hard time winding down to go to bed.  Then during waking hours, the ones who didn’t get enough sleep and couldn’t do anything about it end up cranky and short-tempered.  The upside is that sometimes we’re exhausted enough from staying up to go right to sleep, but that’s not always the case.  For myself, I rarely get a decent night of sleep away from home, partly because I end up having to sleep close to family members, some of whom make enough noise that I can only manage a few hours of sleep even with earplugs.  I also end up dealing with whichever of my children is either having sleeping issues or just can’t get themselves settled down to let the others sleep, and that cuts into my own sleep time, as well.  None of this tends to bring out the best in me, but I can usually get by for a while with people whose company I enjoy.

What to do about it all :

Having already had some unpleasant experiences that were difficult for me to understand, now when I’m with certain people, I tend to feel anxious or threatened.  My fight or flight response kicks in, and it’s hard to communicate effectively in that condition.  Difficulties associated with travel make it worse.  I’ve already had some discussion with a couple of people I trust about options to help with sleeping arrangements and with having some space to ourselves when we need to regroup.  In terms of practical preparations, we’ll do what we can.  For personal preparation, my main goal at this point is to build myself up enough before I go that I can be firm about my own decisions without becoming angry or defensive in the process.   That last bit is the tricky part.   The one thing I don’t want to do is to make a challenging situation even worse.  I’m hoping that continuing to process my thoughts and feelings through writing will help to facilitate my self-assurance and peace of mind.  (And if anyone here wants to kick in any suggestions,  I’m definitely willing to listen. :))  I’m also working my way through some Zen literature that has helped me with difficult feelings in the past.

Cover of "Taming the Tiger Within"

Cover of Taming the Tiger Within

I think I may have to work on maintaining those qualities of peace and feeling secure within myself  in the presence of some stronger personalities before I can be calm enough to communicate effectively with them.   I think it’s at least worth some time and effort on my part trying to improve these relationships and the effect they have on me  and my family.   Honestly, I’d really like to get to the point that  all of this stuff can be in the background, and we can relax and enjoy what should be a very special day for two very special people.

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Comments on: "The challenges of visiting family" (12)

  1. Wish I could offer wonderful advice that would fix all of that. I certainly understand it, especially the sleep and travel issues (which I fix by no longer traveling). Of course, we also deliberately moved next door to my family so that travel and all the accompanying issues would not be a problem.

    If it were possible to fix the sleep situation by staying in hotel rooms, one for each person, that would be my recommendation, but it’s such an expensive solution that still might result in people not sleeping because of discomfort at the strange place, strange noises, that if it were me I wouldn’t think that, even if it were affordable, it was a feasible suggestion.

    I hope you resolve it successfully. ((()))

    • Thanks, Kim.

      We’re looking into options, keeping in mind that money’s a bit tight, and Hubby never parts with it easily, anyway. This is on an island in the Great Lakes, so choices are limited. Also, you can really only leave during the times the ferry is running, unless you want to take a very long swim. 🙂 My mom offered to kick in for a hotel or bed and breakfast, and the groom may have a friend with a place available. I just got a bit stressed with the originally proposed plan of sleeping in close quarters with two other families, one of whom includes the relatives with whom I had this huge miscommunication episode. Being told that the place will sleep X number of people wasn’t exactly much comfort to me, since I stress out at the idea of sleeping with a bunch of other people.

      We travel much less than we used to do, and I’m much happier because of that. Every month or even every other weekend for a while was taking a huge toll on me. I’m very grateful that my parents are still healthy and accommodating enough to come here once in a while.

      Thanks very much for your supportive words.

  2. I clicked on the “Taming the Tiger Within” link and found this quote: “We cannot enjoy life if we spend a lot of time worrying about what happened yesterday and what will happen tomorrow. We worry about tomorrow because we are afraid. If we are afraid all the time, we cannot appreciate that we are alive and can be happy now”. pg 179

    i think that’s beautiful. Visiting family can be very stressful so I don’t have any advice (sorry!) but I hope you find a way to enjoy your trip.

    • That is lovely. There’s a lot to be said for making conscious choices about what we’re going to focus on.

      Thanks for the encouragement. I really appreciate it.

  3. A lot of what you have written here feels very familiar with what I have gone through with family dynamics, travel, communication….it’s like I wrote it! 🙂 I have a lot of my anxiety issues with family.

    I used my sister visiting as an experiment, I know that sounds bad but I did. She represents the side of my family that either has said nothing is wrong with Daniel or we can pray it away. Only a couple of them have talked to me or really listened, they all have advice. BUT this time I was able to share while she watched Daniel, I think that made a huge difference.

    When people are far removed from a situation, it is easy to make quick judgements and determine what is best. However, that is not very beneficial to most people since the “others” don’t really understand the circumstances.

    When I realized that many of my family members were trying to be helpful from their limited knowledge on our lives, I was able to let it go more but I also got more courage to speak out. I realized just because they acted like they knew, they really had no idea. Although, this is a work in progress that will take time with me. I have to sift through the good advice and the bad advice.

    Being my first experiment with my sister, I think that one went well. 🙂 I did notice that me talking about what I was feeling helped a lot before she came. In the past I have kept quiet and held it in.

    I think being able to acknowledge these feelings and have validation for them helps to be able to move forward. It’s ok to feel what we feel or think about past experiences, it’s what we do with all of that now to move forward and not get stuck.

    I don’t know if any of that helps, but the quote that bbsmum shared does! I hope all goes well and everyone is able to enjoy themselves. Especially you. 🙂

    • Thanks very much. It does help to have feedback and to know I am not alone. It also helps to encourage me that things can get better and that it’s worth making an effort. I need to learn to speak up more if I want people to know what’s going on with me, and having a chance to practice here helps to make me a little more brave “out there”.

      So glad you came by to leave such a thoughtful comment. 🙂

  4. Diane,
    I know what you mean about sleeping arrangements, diets, etc. We have to factor in time differences when we traveled to visit my family too. The last couple of times we have traveled on mileage rewards, so I have felt okay about springing for a Homewood Suites Hotel. This saved a lot of grief for us since we were still on Hawaii time and stayed up late and got up late too.

    • I imagine the time difference would make things even more complicated. It’s important to do what you can to take care of your needs.

      Hope things are going OK for you. Thanks for taking time to stop by and comment.

  5. Diane, this post is a reminder to us all that those who are not on the ASD spectrum can be more insensitive, self centred, and lacking in communication and social skills than those who are. I’m sorry you felt you needed to apologise to your family members and take all the responsibility for the breakdown in communication when it seems to me the immaturity lies with them, not you. Perhaps another way of thinking about these people is not so much as them being ‘strong’, but more as lacking in social grace and basic empathy. I think your decisions around how to handle the situation are spot on.Centre yourself, do not capitulate for the sake of peace, but do not react defensively.
    As much as I hate to quote Dr Phil, there’s at least one thing he says that is true. We teach people how to treat us. If we stay true to ourselves and our needs, people will respect us, even if it is grudgingly. Good luck.

    • Hi, Sharon.

      I sincerely appreciate your very thoughtful response. I do realize this isn’t all me. However, in trying to be a responsible individual and also in having some genuine difficulties reading people, it can be a challenge to figure out what’s appropriate and useful in a given situation. One of the individuals I mentioned having bigger problems communicating with is a sibling, and I’ve spent my entire life trying to figure out how to manage a situation in which the other person is not interested in meeting me halfway and has a violent temper besides. I did manage to teach this person how to treat me toward the end of our childhood together, but that partly involved something I learned in a judo demonstration. 🙂 Figuring things out as adults who are, thanks to some regrettable decisions made when the economy was better (I went along with my husband against my better judgment – another life lesson learned), stuck managing parts of a business together, is proving to be more challenging. Dr. Phil does have some useful things to say, and I agree with what you’ve mentioned here. Thanks for the encouragement. It helps.

  6. Val Spenko said:

    As someone who has a sister with ASD, I feel I need to speak up for the sibling you have discussed. It’s difficult to be a sibling of an autistic child, and the pain you may have caused your sibling perhaps needs to be acknowledged. In your post, I read a very one- sided person who has difficulty understanding the way others see her. An autistic worldview can be so black and white. Family relationships are so much more complex than that. I hope you and your sibling find peace and healing. I imagine that will take more than showing them how to be a sibling to you; it will probably take hearing their pain, too.

    • Hi, Val.

      I’m going to spend some more time thinking about your comment, because you’ve clearly given this some thought, and I’m sure there are some lessons in there that I can take from it. To be honest, this is taking me a bit by surprise. My family has never considered me to be someone who might be on the spectrum, because I’ve been outwardly successful and tend to keep any issues to myself. They joking call me “the good one”, because I do what’s expected of me and keep quiet and try to make other people happy – I don’t make waves. It’s not necessarily healthy, but it makes other people comfortable. My sibling tends to blow up at people and show a lot of temper, and so attracts more negative attention. He and his wife have are both taking medication to address their own difficulties. The reason I can comment on how others within the family see the two of us is because they have told me, and I believe them, so I have trouble believing I am only seeing one side of things. I generally look for other people’s opinions a lot, because I don’t trust my own interpretations. I do feel like I take things involving my sibling and his spouse more personally that aren’t actually about me at all, because I tend to take everything personally, where other family members have an easier time just telling themselves “that’s just how they are”. That’s what I was intending for my post to be about – my oversensitivity to things others can take in stride. For what it’s worth, there’s a lot of acknowledged depression and alcoholism within my extended family, so it’s not as if I’m stuck having issues and everyone else is doing just fine. We’re a colorful bunch.

      I’ve recently attended the family gathering I was referring to in this post, and things went OK. There were some people having issues with each other, but none of them involved me or my husband or kids. My kids actually did quite well, although they were extremely stressed on the way home after all that “behaving” with people. I set some boundaries for myself and my own family, and that helped a lot. We didn’t stay overnight, even though one family member was really pushing for me and for my parents to do that (I think I counted eight different times that she brought it up within an hour), and that was a better choice for us. Better to not involve sleep issues, and better to get going before anyone had too much more to drink. My husband and I and my parents had independently seen a few different pockets of tension forming among different family members and didn’t really see a benefit to becoming part of that. By limiting our time to the ceremony and the few hours before and after, I was able to let the day be about my sister and her wedding instead of any side issues of my own or anyone else’s, which is what I really wanted.

      I have to think some more about this idea of showing my sibling how to be a sibling to me. I’m not sure how things are “supposed” to be, because this is the only close sibling relationship I’ve ever had. My older siblings are much older and moved out of the house by the time I was about four, so they don’t feel as much like siblings, because we never grew up together. I don’t feel like I’m a particularly great sibling, so I don’t feel especially qualified to instruct somebody else on how they should be. If we could just work on being polite and kind, or at least civil, when a different opinion about something is expressed in a respectful way, I’d be very content with that. My brother was an acknowledged bully among kids outside our family for a while, and he was that way with me for while before I learned how to stand up for myself as a teenager, so the fact that he’s more in control of himself and when he does blow up is limited to loud words is a real improvement for him. He’s genuinely doing the best that he can. It’s just really hard for me to be around him when he’s having a rougher time, because I don’t know how to separate myself from the drama and intensity of that.

      Thanks for taking the time to comment. This is giving me a lot to think about, and I’m sure I’ll be processing it more for a while to come.

      Diane

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