Finding Ourselves on the Autism Spectrum

Posts tagged ‘Aspie’

Putting things into words

TED 2010 Temple Grandin

Image by redmaxwell via Flickr

OK, I’m sort of having a little “aha” moment here, and the challenge I’m finding getting the moment into words to share actually relates to what the moment is about.

I’m in the middle of watching a very cool speech by Temple Grandin at the TED Conference, which you can find here:

http://www.eileenparker.com/2010/03/temple-grandins-speech-at-the-ted-conference/

Temple is sharing a lot of information about different types of thinkers, and I realized I usually have trouble deciding what kind of thinker I am. I’ve definitely noticed some tendencies. I can take in information through visual, auditory, or other sensory channels, but I have a lot of difficulty attending to more than one channel at a time. I’m not sure I actually ever do attend to more than one channel at a time – I’m just relatively proficient at switching between them, and I tend to switch frequently if I’m not particularly absorbed by something. If I’m listening to someone speak, I may find after a couple minutes of actually attending to what they are saying that my gaze has drifted elsewhere. I have no idea whether other people notice this about me or not. And if I’m concentrating on something visually, it’s hard to hear what anyone is saying to me. If I’m being bothered by something on a more primitive sensory level, it’s a challenge to attend to much of anything else at all.

I have also noticed that I seem to communicate more clearly in words when I can write and edit and change things around – unlike trying to talk to someone in person or on the telephone. I can have a tendency to go overboard with rewriting and correcting myself sometimes, but with no opportunity to do more than one draft, I really have a hard time getting across to another person what seems perfectly clear in my mind, even thought it’s not in words. It probably doesn’t help that I do a lot of my conversing through the day with children and teenagers, who also have a tendency to have lots of only partially-formed thoughts popping out of their mouths. I don’t get so much practice speaking with adults, apart from sharing the latest adventures of our kids, which don’t usually require much editing – just relating of things as they happened.

I don’t plan what I’m going to say as I’m talking, because I can’t really think and talk at the same time. (That doesn’t sound too good, does it? 🙂 ) It works OK when I know ahead of time I’m going to be dealing with a particular issue and have some kind of script for that in my mind to keep me on track. Otherwise, I can be as surprised as anyone by what comes out of my mouth, and I sometimes learn things I didn’t know I knew by hearing myself say them. I’ve actually had some tremendously cool conversations with certain individuals I trust just by talking and listening that way.

So I had been trying to decide if I was more of a language-based, auditory learner – unlike my oldest, Simon, who has shared with me that he sees in pictures or in pictures accompanied by words and gets totally freaked out if the pictures aren’t there, which has happened before under great stress – because I don’t consciously see everything in pictures and sometimes even have trouble forming a visual for things I hear if I don’t already have an associated visual file for that somewhere in my head.  I think I have a lot of trouble translating things that come into my mind from one channel into some other form.

[ A little digression here: When I read a book, I feel a need to have some actual individual’s face in my mind attached to a particular character or I can’t really connect with the book. It’s very helpful if I’ve seen the character portrayed on film or television, because then my mind just goes right to that actor’s face and voice. That works out well for the mystery novels I read, because lots of novels have the same main characters. If I don’t have a ready reference like that, I sometimes just end up choosing some actor I’ve seen in something that reminds me of a particular personality and use that.]

The truth is, I’m not sure I have a handle on how I actually get the impressions that are in my head. I suspect I’m scanning things from a variety of channels (auditory, visual, memory) and then zeroing in on those that interest me in some way.  It makes me think of the Google reader I’ve only recently discovered and started using to keep up with lots of different blogs – I can see parts of a lot of things all together at one time, then just pick out things I want to focus on one at a time.  But the reader holds onto the other updates while I am focusing on just one, whereas in my mind I tend to lose track of anything not in my current view.  I think where words and language come in is when I’m trying to sort through all the images/impressions swirling around in my mind into something that makes sense and can be retained for future use – at least for me, if not other people.

I have this thing about organizing. I get totally geeked walking into an office supply store. I can lose track of hours organizing books on my shelves or files on my computer without actually feeling a need to read any of them at that particular moment. I do read quite a bit, but it’s a completely separate interest for me from filing away information and sources of information. I’ve stored away so many articles on my computer about autism-related issues that don’t directly relate to my life, because I just like having it handy to retrieve in case maybe someone I hear about might be able to use it. Some info is also for myself and my family, but even that needs to be indexed and categorized, because I don’t seem to have any working or long-term memory to speak of. I see something, decide it has value, and immediately want to put it away somewhere where I won’t lose it – with my mind definitely not being a reliable place for storage. I can scan and re-familiarize myself with something extremely quickly once I’ve read it through once, but without going back through after some time has passed, I have a lot of trouble retrieving any relevant information.

This is reminding me of how my husband assured me fairly early into our marriage that I didn’t need to study to retake a driver’s test for my lapsed license, presumably because I was a good driver and an exceptional student, and because he found the test so easy. I had the study materials in my hand, but I didn’t use them, because I favored another person’s perceptions over my own self-knowledge, which I didn’t feel secure in or able to explain. I then proceeded to fail the written test and had to wait to take it again. Ten minutes study was all I needed, but I NEEDED the ten minutes to access that information and to carry me past over-analyzing the language of the questions and trying to process too many different scenarios from every possibility I could imagine.

Now that I’ve written way more than I intended when I first sat down, the point of this whole “aha” moment is that it’s just dawned on me that my focus on language isn’t necessarily because that’s the learning or means of expression that comes most naturally to me. I think it’s actually because it’s my means of trying to sort through and organize everything in my mind that mostly streams into it raw and unprocessed. It’s analogous to being in a messy room – which happens way too much in my home for my peace of mind – and having to sift through and put things away in order to be able to start finding anything. My outer experience is actually mirroring my inner one, which fits in with my overall personal view of the universe, so it somehow makes sense to me.  For now I suppose “that’s all I have to say about that”. 🙂

Regrouping

I’ve got too many things running through my head at once to think out a coherent blog post this morning. But I’m in a happy sharing mood, so I’m just going to babble on for a while and see what comes out.

 My new address:
 

The first thing on my mind is that I’m glad I went ahead and changed my blog address – which also meant changing my user name – especially since it turned out to be a lot simpler than I thought. It was something that kept nagging at me after I unintentionally chose a username with my actual full name in it, which I use for lots of things, and realized that became the basis for my blog address. Goofy, I know, but I often tend to miss details like that. I focus in on one tree at a time, missing the forest and many of the other trees in the process. I haven’t had any bad experiences with my blogging so far, but I’m still pretty new to this, and I’m not ready to share the more spectrummy aspects of our lives with people who know me outside of this community at this point. I also don’t want to do anything to make my kids uncomfortable, which is why they already have pseudonyms here. So, anyway, this gives me a greater degree of comfort.

Simon was reading my blog:

I learned yesterday that my Aspie teenager had been reading a bit of my blog, probably because it was left open on my computer, which the kids end up using more and more for homework. I think for the most part he’s been ignoring it, but yesterday he asked a question about my choosing to put something in all caps in a recent post. He didn’t seem bothered at all by what I had written, and he generally lets me know in a big way when he’s bothered, so I’m happy about that.

We all need a mental health day from time to time:

Yesterday was a bit of a fallout day for Simon. After doing so well with the very intense experience of the robotics team competition, where his team got this special engineering award 

              

which he wore all through the next day :), he had a hard time managing back at school.  The change for Daylight Savings Time really didn’t help, either. (I’ve never been a huge fan of DST, and when we lived in Indiana for two years, we didn’t have to observe it.) Anyway, Simon made it reasonably well through Monday and even the beginning of Tuesday. By reasonably well, I mean he fussed a great deal and made a point of saying “this is insane” and “I really can’t do this” over and over again with reference to waking up, doing homework, etc., but with some help from me, he still got the job done. Then partway through Tuesday morning, he hit a wall.

So apparently somebody decided it would be a good idea to do vision screenings on the entire student population of the high school, and we had somehow either not been informed ahead of time or just missed the information. Simon has only ever had his eyes checked at regular pediatrician appointments, and there’s never been a problem. But these folks told him he didn’t “pass” the test with one eye, and that started a downward spiral. (That’s something we’ll pursue at some point, but he hasn’t noticed any problems, and this just wasn’t the day to get into it.) They did the testing during his second hour class, and he got too upset to make it to his third. I got a call from the teacher consultant saying he was in her office and having trouble. I hope I’ve mentioned at some point before that this woman is absolutely wonderful. Besides doing her job of being an intermediary between parents / students and the teachers extremely well, she’s taken time to get to know me and my son, and she lets him eat lunch every day in her office to decompress.

She and I talked. She passed along my assurances that he wasn’t in any trouble and that I would support whatever he needed to do, because he didn’t feel up to being on the phone right then. She called again later to say he was still having trouble relaxing, and this time he did talk to me on the phone. He decided to give a try at going to his fourth hour class, which wouldn’t be too stressful or require much interaction, and after that he decided he was ready to come home.

Hubby and I agreed over the phone that everyone needs a mental health day from time to time, so we were fine with him coming home. I made my boy some food and sat him in front of a funny television program, after which he played a video game. He never got the nap I was hoping for, but he eventually relaxed enough to face completing some homework and even helping Alvin with some of his.  Today he’s back at school and halfway through his day, and so far everything seems to be going OK. We fall down, we regroup, and we get back up again. Thankfully these days the process usually goes more quickly than when he was little. A lot more quickly.

Sibling stuff:

On a side note, poor Alvin had to do an unusual amount of difficult homework yesterday. Alvin takes a math class two years ahead of the rest of his grade, so he’s pretty good at math. And he has what amounts to a study hall at the end of the day, so he rarely comes home with much homework. Last night, even with help from Hubby and his big brother, Alvin spent two hours struggling through trinomial factoring. Simon became more helpful once I said that I’d give him extra video game time to make up for time he spent helping Alvin. 🙂 Simon is also very good at math and takes a class one year ahead of his grade – they didn’t offer two years ahead when he was Alvin’s age, which is a source of frustration for Simon and entertainment for Alvin. The nice thing about this arrangement is that Simon just had everything that Alvin’s class is covering last year. Later in the evening, Alvin told me that there were things Simon could do in seconds that were taking Alvin twenty minutes. Alvin said it took him longer because he’s not autistic. I think that may be the first time he’s referred to Simon’s autism as an advantage rather than an annoyance. I just told him that with all the challenges, his brother gets to be good at some stuff, too.

 

 

 

 

 

 

It seems I was mistaken

It seems I was mistaken.

My middle son, Alvin, likes to make noise – constantly. He hums and drums and whistles quite loudly all through the day until each and every other member of the household is at their wit’s end. And I have honestly believed, up until quite recently, that this was done for the express purpose of annoying the people around him and/or getting attention. It has seemed even more bothersome in light of the fact that two of us have Aspie issues and difficulties tuning out background noise in order to function. And when my NT husband who doesn’t generally have these issues has also been driven to distraction, I have usually concluded that the noisemaker was, in fact, being a trouble-maker.

Please understand, Alvin does cause trouble. He “stirs the pot” so to speak and will move from room to room in our home starting unpleasant interactions with whomever he finds. Besides making random noises all through the day, he will talk at length to people who are clearly trying to read, nag people about issues on which they’ve already declared their position quite clearly, comment upon siblings’ activities and personal habits, and even harass our pets when he’s feeling bored – all seemingly just to get a response. He also has a tendency to invade other people’s space and to barge into rooms that aren’t his when other people are trying to be left alone, because he doesn’t like being alone. And when he’s not doing any of that, Alvin’s still making seemingly random noises.

I usually deal with Alvin’s anxiety and boredom by going along with whatever social plans he happens to make, giving him jobs to do which take him out of the room currently being occupied by his latest victim, and trying to find books series for him to read. Once Alvin finds a series he likes, he’s a reading machine. I also try and create times when I will specifically pay attention to him and give him a chance to tell me about whatever is on his mind. He doesn’t really require that other people participate in his conversations and frequently argues with whatever they say, anyway, but he has a tremendous need to talk. Still there are frequently times when enough is enough, and I just need a few minutes of quiet in order to think before I can figure out how to meet his needs and mine and everyone else’s. And that’s generally when things like the random noises become too much.

Alvin doesn’t have a diagnosis. I can tell from my experience with Simon that Alvin has major anxiety issues, and I’ve witnessed his temper. I even took him to therapy for a while to try and work on anger management. He has problems with being alone, unless he’s really engaged with a book or a game, so he keeps seeking out company. Then his general behavior begins to annoy whomever he’s with, and Alvin gets defensive and angry. He’s smart and loves to argue, so then the interaction turns into an argument, which with siblings can often escalate into something physical. So basically, the kid moves from room to room leaving problems in his wake. I can actually tell what room he’s in by listening for where there’s a problem brewing in my house, and when he’s away at a friend’s, the house is noticeably quieter.

Once again, all of us including myself have been working on the assumption that Alvin is doing this on purpose – or that at the very least he has some control over his behavior that he’s not exerting. He’s not autistic. He behaves very well at school, and I’ve never had a complaint from any of his friends’ parents. He has at least a general understanding of which of his behaviors are problematic for other family members and why, because he’s been told at length again and again. But it just keeps happening. And I think I’m starting to see why.

As it turns out, Alvin is constantly making noise even when no one else is around. Lately I’ve been finding him humming and drumming and tapping and whistling even when there’s no one there to annoy. I’ve also been trying out this idea of looking at my other kids the way I look at Simon – not assuming he can do things just because others can or because he’s supposed to be a certain way at a certain age. Simon has a diagnosis and a whole string of professionals who could give reasons why he has certain difficulties. Alvin doesn’t have any of that, but does that really mean there’s nothing going on with him? He’s certainly anxious, and while that might be reduced if he weren’t in such frequent conflict with those around him, for now maybe the noise-making behaviors are just his way of soothing himself. That’s how I would interpret the situation if it were my Aspie son doing the same things. Why should he be the only one who gets the benefit of the doubt?

My husband will occasionally joke that Simon is my child and Alvin is his child because of their personality traits, and I haven’t disagreed. (We’re still not settled on which of us gets to claim our overly social Theodore :)). More and more it’s looking like I’ve been judging the behavior of my essentially NT middle son differently simply because he’s not an Aspie. Looking back, I think I’ve been holding Alvin to a different standard. It’s a standard that hasn’t worked for at least two of us in this family, so why should I assume it would work for him?

Just as I’ve been in the middle of writing this we’ve had another problem between siblings. It was typical in that there was really no one person at fault. Simon didn’t want Alvin invading his space, Alvin was just trying to talk to him, and everybody overreacted. After separating them and solving the immediate problem, I told Alvin some of what I’ve been thinking about things that he does not really being on purpose and maybe just being a way to calm himself. He told me that the “not being on purpose” part was what he’s been trying to say before, and I told him I was sorry for not understanding and believing that right away. I’m not sure exactly where we go from here, but just saying that seemed to calm him down quite a bit. We still have the problem of managing the needs of a family member who feels compelled to make noise and the needs other family members who require quiet in order to think and function. Hopefully with all of our needs on more equal footing we can start to make some progress.

Scouting for Social Skills

This post started as a very long reply to a post at Pancakes Gone Awry. (If I spent less time commenting, I’d probably write more on my blog 🙂

Our experience with social skills training has been pretty hit or miss. My oldest son, who I’m referring to as Simon here,  is an Aspie and has gotten some benefit from actual social skills groups at times, but most of the progress he’s made has come from real-life training. The groups have mainly given us some information and a place to start, along with a captive audience to participate while the kids work through things:)  Some groups have been more useful than others.  We got an idea of the kinds of things we could work on with Simon and tried to figure out how to fit that into real life situations. We stopped going to the last one a few years ago, because we felt he had kind of maxxed out the benefit he was going to get in an artificial setting and that his time could better be spent elsewhere.

 My husband and I kind of zeroed in on Cub Scouts and Boy Scouts  as being groups that would be more accepting of our son and his social difficulties  because of being faith-based and aimed at building character.  As my husband put it, “they kind of have to take him”, in order to be true to their values.  And we felt they would provide more variety of activities and less competition than other options that were available. Also, in our experience, structure is good.

My boys are all scouts now:  One Wolf Cub, one Star Scout, and one Life Scout.  Simon, in particular, has had to be pushed quite a bit at times to keep with the group for this long because of all the ways in which it has challenged him. We’ve gone through public and private meltdowns, anxiety attacks, and the discomfort of watching your kid struggling in front of others with things that come easily to most . It was harder when he was little, too, with lots of little guys running around and making noise much of the time.  Simon’s also had issues with all the time and effort required, and sometimes with the physical accomodations of all the camping.  And my wonderful, supportive husband has attended every meeting, campout, etc., and has spent much of his time being a group leader, because our boy just wasn’t going to be successful doing all this on his own.

Simon’s come a long way and doesn’t require that level of pushing these days.  Scouting has done wonders for him in mind and body.  He’s accomplished things and met challenges that he never would have attempted on his own.  And he’s had ongoing opportunities to learn how to interact with other boys and men in a safe, supportive, and structured environment in which how people treat one another is taken very seriously.  He’s handled boards of review for rank advancements, speaking one-on-one with with merit badge counselors, making speeches, and countless supervised activities with other boys who are working on similar goals.  In addition, the physical challenges have been great for his sensory system.

We have been blessed to know several other families with boys who joined the same year as Simon and also stuck with it, and they have  been very supportive and are great friends.   The boys are all taller than I am now and have become fine young men. They have all learned skills and values that will help them throughout their lives, including some very important social skills. Simon is currently one rank away from becoming an Eagle Scout, and I couldn’t be more proud.

Simon still has challenges with this activity, as he does periodically with most aspects of life.  And I certainly don’t mean to suggest that every Aspie kid out there ought to join scouts.  I don’t believe there’s any group or activity that’s going to be the right fit for everybody.  And I’ve been unhappy and overwhelmed with it at times, because it’s been real work, and it’s been hard.   It’s just nice to share an experience that we’ve found to be of ongoing value in our lives. 

We  have been very blessed in terms of the group of people with whom we ended up through these years.  Some have come and gone, but the overall atmosphere and values have remained consistent.  Of course, our family has been part of shaping that group, too, which is probably why it has worked so well for us.

BTW, did you know that Steven Spielberg didn’t have any interest in film or photography until he started working on the photography merit badge?  He’s an Eagle Scout.  This link lists quite a few more famous eagle and non-eagle scouts and some stats about how many people achieve the eagle rank (on the off chance that anyone is interested):

http://usscouts.org/eagle/bsfamous.asp

My husband has a master plan for helping our extremely busy oldest son to achieve his eagle rank without having to push him too hard – he’s going to push the younger brother, instead.  No way our ultracompetitive Aspie son is going to stand still for his younger brother passing him by.   I really can’t argue with the logic 🙂

Homework on and off the spectrum,and Asking for help

Hi, Everyone.

I don’t know if this is considered bad form, but I just wrote such a long response to a question I came across on a Facebook posting for Hartley’s Life with 3 Boys that I want to turn it into a blog post.  I put more time and thought into it than I had initially intended, and I’m adding a few things here.  I mostly feel the need to write things after a comment or question made by someone else starts me thinking.  I really want to post something today, and I  have so much other stuff to get done, too – including reading through all the comments that have showed up since I checked last evening (I promised myself to get the laundry and cleaning out of the way first, and that can be my reward:).  Plus, this is a less angsty, slice of life sort of thing that I want to be able to write about sometimes.  If I get more time later I may move on to something deeper.  Then again, who knows?

On asking for help:

I feel like mentioning first that reason I got on Facebook this morning before venturing here or even to my email is that I decided to ask  for something I want.  Specifically, I was asking friends nearby for help with transporting my youngest home from school certain days so that I can have time to spend on my Aspie son and his homework right when he gets home and can still focus.  That’s a pretty big thing for me – the asking and the sharing of a little Aspie part of our lives .  But since I’ve been asking people here for help with questions and for doing me the great favor of reading my initial posts,  I’m very pleased with how that’s working out, so I’m trying to build on that momentum.  While I was writing this I just got interrupted by a friend letting me know she can help with my request, so that’s worked out, too.   I also asked/informed hubby this morning that he ought to tell me I look skinny today, which I do, because I haven’t yet found a way to eat while doing all this typing.  Since he’s an intelligent man, he responded with appropriate enthusiasm 🙂

And now on to what was supposed to be my post before I digressed.  On the subject of how we approach homework for my three boys:

I don’t know what would work for anyone else, but this year my ASD guy started high school, and we’ve mostly gotten into a groove with the homework after a pretty bumpy start.  Mostly it’s been a matter of insisting that he and I both go through each subject for the day and see what needs done and if he has the needed papers, books, etc., BEFORE we can talk about going off to do anything else. I still have to insist on this every day.  Then I ask him to give me an estimate of how long each item will probably take, and we figure out a total (adding a bit more time in case he’s figured low), and we look at what else is happening that evening and how much time he has to work with.  He has a parapro, and she provides her own list of the homework assignments, in case he missed anything.  I had to ask pretty insistently for that, as a matter of fact, but it’s been a huge help.

At this stage, it’s working much better to then ask my ASD guy to generate a plan himself for how he’s going to get things done and in what order, but I used to do that for him.  He’s finally become invested in doing well after so many years of me thinking he maybe never would, and being a teenager, he feels a great need to be in control of as much of his day as possible.  If time permits, he really seems to need a half an hour of downtime before beginning his homework, so I go along with that, but I keep tabs on the time to make sure that after that he’s at work.  If I don’t, it’s a crapshoot as to whether he’ll get moving on his own when the timer goes off or not.  If there’s a ton of homework, he can alternate his work with timed breaks. Again, I need to help keep track.

For ASD boy, habit is everything, and if we let things slide or I don’t keep track of his time with him, he gets overwhelmed and starts becoming very resistant to working on much of anything.  He has a nice big desk in his room now (mostly he stores stuff there, but it leaves his bed free as a workspace :), so I often have him work there and check on him if his brothers are too much of a distraction.  I do have to keep checking, though, because he’ll lose track of what he’s supposed to be doing.

My middle son is NT, but he’s a procrastinator and very absent-minded, and he has pretty intense anxiety and anger issues.  What’s finally ended up working for him is that we go through much of what I do with my older son, but more quickly and usually just verbally.  If he doesn’t make a plan right when he gets home, it won’t occur to him again that anything needs to be done until late enough in the evening that he ends up having a meltdown.  With him, too, a timed period of free time, then back to work until it’s done.

My youngest is only 7 and ahead of grade level in reading and math, so even if we forget his homework until morning, right now it’s no biggie.  I do try to get him working on the same plan as the others when I can, mainly because I finally have a system worked out, and habit is such a big deal around here, but he has so little homework, and sometimes there’s just not enough of me to go around and keep track of everybody 🙂  Sometimes something’s just gotta give.

Different kinds of friendship

I want to thank everyone so much for the extraordinarily warm welcome I received yesterday upon starting my little blog.  I was all set to run and hide like a scared rabbit, because I’m overly sensitive to criticism and rejection, but you made me feel interesting and accepted.  It really makes me want to write more. Part of me is still a bit nervous, though, and I’ll tell you why.

(Inserting disclaimer here: In real life I’m usually much less serious than I am finding myself here as I write this.  Humor is the main coping mechanism for most of life in our family, but for now I seem to be working through some things.  Please bear with me. )

To be honest, a part of me is wondering just how far this acceptance will go and how long it will last if I keep sharing what’s going on in my head.  I’ve developed this concept of myself as someone people only like as long as they don’t look too closely, and as long as I keep up appearances.  I’ve gotten better over the years at knowing the standard things people find acceptable for me to say.  It goes along well enough for a while.  Then I gain more confidence, start to relax more and filter myself less, and somewhere along the line the atmosphere in the room changes or someone makes a comment, and I realize again that I really am some sort of other and not part of the group at all.  At least that’s how it seems to me.

I’ve been getting a different reception here, and I enjoy so much exchanging ideas with people who have their own perspectives on things that matter to me.  It’s such a breath of fresh air, and I keep wanting more.

The relationships I have with people in my daily life mostly seem to revolve around whatever it is that we have in common.  I guess that’s normal enough. Usually it’s kids.  Occasionally a hobby or pet or a common life experience.  And there’s Facebook, where I can momentarily connect over a difficult or amusing moment in my day or someone else’s, and then we drop right back out of each other’s lives again. 

I actually do enjoy being in touch with more people this way than I would otherwise.  I can’t manage long phone conversations or evenings out very often, so it’s a way to keep up on what people are doing and to share what I’m doing without having to have dozens of separate conversations.  I also sometimes enjoy the brief exchanges I have with other parents on the school playground or at the door at the beginning or end of a playdate, although that tends more to be  if I’m having a good day.   Still, it’s all very limited involvement and within pretty “safe” subject areas. 

Once in a while there will be a longer conversation while the kids play in the neighborhood pool, or when we lose track of time waiting for them to finish some activity they are doing together.  It seems like those longer conversations mostly happen with parents who have at least one child with special needs.  Even if the issues are different, we can talk about something real and meaningful to us, and we can share at least some of those moments that other parents aren’t likely to experience or understand.  Plenty of people in my neighborhood or on my friends list will be happy to listen to a story about my car troubles or my kids’ last visit to the dentist.   They just don’t know what to do with a story about my teenager having an anxiety attack that takes up my whole afternoon or not being able to get himself dressed in the morning because he can’t stop staring into space long enough to put something on. 

I’ve had one good friend for most of my life who loves to bounce ideas back and forth with me , and I treasure that relationship.   We can talk about spiritual things and practical things and even autism things, because she has spent much of her career as an exceptionally insightful special ed teacher.  This friend is actually the one I credit with taking me under her wing and helping me to fit in and find friendships as a lost adolescent Aspie girl.  She has always thought I’m funny and interesting and unique in a really positive way, and she’s never asked for more than I have to give.

I told this friend pretty recently about my deciding that I am on the spectrum, and she responded with love and respect for my feelings.  There was also a certain amount of disbelief that I could in any way have something that’s considered a disability.   To her, I’m wonderful just as I am, and I truly love her for that.  At the same time, it helped me to realize that much of my life experience has really been kept all to myself.  Over at Life in the House that Asperger Built there’s a discussion going on about challenges and  limitations, and I especially relate to a comment passed along from a friend of hers by Rachel Cohen-Rottenberg about having to “pedal harder than other people just to get to the same place”. (Thanks, Rachel).  Because I end up looking like I’m doing OK – at least for the periods in which I am out “performing” – nobody gets to see how much effort it took to get me there or the limit on how long I can stay before turning back into a pumpkin.

It’s hard to share with people things about myself that I know they just don’t feel.  Come to think of it, I’m not exactly sure why that is.  I suppose it just emphasizes to me how different I am.  Even if they are being kind, I feel self-conscious.  It’s so unburdening to be able to say that I’m depressed or anxious or I just can’t think right now because the TV is too loud or the kids are all talking at once or I just need to be away from people for a while and to have that be OK and not something anyone feels a need to worry about or to try and fix for me. 

I’m not looking for anyone to pity me.   If you look closely enough, everybody has their challenges – some that truly make me wonder how people even manage to get up in the morning –  and I wouldn’t trade mine for someone else’s.  I would just like to be able to say how I’m feeling and what I need to do to accomodate that and to have that be accepted without anyone telling me how I could change things or make things better.  A need to fix something would imply that I’m a broken version of a “normal” person.  I’m a perfectly fine version of me, and I’m really enjoying getting to know more of the fascinating people in this corner of the blog world. 

This is one of my favorite concepts from old school Star Trek:  IDIC – Infinite Diversity in Infinite Combination.  Who wants for us to all be the same, anyway?

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Welcome.

Hi.  I’m Diane, and I’m a stay-at-home wife and mother of three boys.  My oldest is an Aspie, and I’ve recently come to believe that I am, too.  The rest of the family would probably be considered neurotypical, although they, too, have their issues.

I promised my middle son I’d give this title to my first blog post, since he came up with it himself.  He’s bright and creative and great at brainstorming.  For anyone who doesn’t know the reference of either the title of this blog or the post itself, they’re both from a book called The Hitchhiker’s Guide to the Galaxy that’s a big favorite in our home.  I first read this book and the rest of the series back when I was in high school, and later I found myself saying “don’t panic” almost automatically to my firstborn baby boy each time he would go into a conniption upon experiencing some form of discomfort, which turned out to be a great deal of the time.  Little did I know then how that phrase would come to define our approach to life here on the Autism Spectrum.

The main character in the Hitchhiker’s book is called Arthur Dent, and early on in the story he finds himself out in space with no familiar frame of reference and relying on one good friend and an electronic archive of information compiled by all sorts of people to help him navigate his way through the unfamiliar challenges he’s facing.   The more I think about it, this is sounding very much like my experience since becoming aware of my oldest son’s position on the spectrum, and later, of what I believe to be my own position there.  My closest friend is my husband, who shares this adventure with me every day, and I’ve also gotten  much information, help, and support from the articles and blogs I’ve been able to access through the Internet.  I’ve broadened my horizons even more in commenting on other people’s blogs and articles when I’ve felt inspired to do so and in hearing what they have to say in return.  After years of isolation and confusion, I can finally communicate with people who are living through experiences similar to my own or at least as colorful.  

I was so pleased to find a blog theme full of color and actually called “Spectrum” when I started searching this morning.  Seems like a perfect fit, plus it keeps me from having to obsess over trying to choose from among too many other possibilities, which I could do for a ridiculously long time.  It’s one of the “spectrummy” things about me. More on that later.

(I got “spectrummy” from “Spectrummy Mummy’s Blog” and want to go ahead and give her credit, since it’s a word I like and find myself using a lot.)

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