Aspie Acceptance

I get emails occasionally from parents and other folks who are looking for more info on Asperger’s Syndrome. Mostly these emails go on in private behind the scenes of this blog, but I’m about to make an exception to that. These are reproduced with permission; so don’t worry about that. I think, and so does the parent who emailed me, that these emails cover some vital topics that would be important for others to see. Thus, here we are.

It all started with a comment on my “I Don’t Know If You’ve Noticed This, But . . .” post by Joell who wrote:

Hi.
I stumbled across your blog when I was searching for some quotes about autism…I like to collect quotes, like you like to collect links! -) I liked the blog about quotes so much that I just kept on reading!
I am the mom of a 13 yr old aspie boy and I have appreciated and enjoyed reading your blog. I love all the helpful links too! And I like your idea that we are all on the spectrum somewhere…I have often had the same thought.
Maybe you could help me with something…my son is in the midst of middle school and is very aware of his differences. I have been trying to help him embrace his Asperger’s and see what an amazing kid he is. He is having a tough time seeing what I see. I tell him that normal is a setting on an appliance, and does not apply to people! Do you have any ideas about how I can help him with that? How did you come to embrace being on the spectrum? Any thoughts would be appreciated.
I realize this is a really long comment…thanks for bearing with me.

I replied both on that same post and via email:

Acceptance of one’s Aspie qualities truly starts with true acceptance of one’s self. I developed that before I ever discovered the aspie part of the deal.

I worked intensively on this for one summer, and have made it a continued part of my existence ever since (that makes it a time period of about 4 years).

First I established what I things in life I knew to be true–what aspects of the world that I believed in (I went really simple at first, starting with gravity). From there I worked up into who I trusted, what I believed about the world, what I knew to be true of myself.

Next, I followed up by telling myself I loved myself every day, but I didn’t leave it at that; no, I told myself that I loved myself, but I also said why. I gave myself examples to look at, and in turn, I started to see those examples in real time in real life.

I think this might be an aspie thing, because I’ve talked with a few others here and there about it. It’s not enough to say something like “I love you,” without explaining why, because so often in life, it is proven to us that people will say one thing, but then do a completely different thing. Not saying that this applies to you personally, but I think that’s just how the thought pattern gets established.

And you thought your thought was drawn out!

P.S.

Check these out:

The Discovery of Aspie Criteria
Top 10 Terrific Traits of Autistic People

And here’s a site with a whole bunch of aspies . . . all experiencing the same sorts of things . . . Wrong Planet

Next, Joell said this:

Thank you SO much for you speedy reply! And thanks for the great links! Those are just what I need. Hearing your perspective is very helpful to me…Of course my husband and I are always affirming our son (J, 13 yrs old, dx’d Aspie at age 5) but I never thought of it the way you described it (saying why) and like the “discovery of Aspie criteria” article stated. I will be more specific from now on. Hopefully that will help J in his acceptance of himself. I have also heard of the “wrong planet” website before and will go give it a look.
I’ve often said that if I could just be inside J’s mind for 5 minutes I would know everything I needed to know to best help him! Ha ha. Learning from someone who HAS lived inside the aspie mind, is invaluable. Of course, I realize that no two aspies are alike, but thanks for being willing to share your expertise with me!!
Another thing that is particularly hard for J, and has been since infancy, is getting to sleep. Is this something you have experienced? I know sleep issues seem to be common with folks on the spectrum and just wondering what advice you may have for that. We do have an evening routine which I think is soothing for him. But it seems like he just can’t “turn off his brain”, if that makes any sense. There is always something churning in there! It’s like he just keeps reliving the day’s events or he will repeat lines from a TV show or something he’s heard during the day. Maybe he’s worrying. I ask him what he’s thinking about and he says “nothing”…I find that hard to believe Winking smiley emoticon, but I don’t give him a hard time about it. Sometimes it will take him well over an hour to get to sleep. We have given him benadryl at night sometimes, at the suggestion of one of his doctors. It seems to help him be drowsy. Just didn’t know if you had something else?
I don’t want to be a nuisance with all the long emails and questions, but I just want so much to help my son. Thank you, thank you, thank you.
I replied thus:
Part of the affirming process needs to come from you two, but he needs to be encouraged to do some of it himself. You need to ask him/prompt him for what it is and why it is that he values himself . . . or what he likes anyways. Or make him aware of some of the cool things that he does that you think are neat, etc. Aspies have a hard time answering general questions–like “how was your day at school?” There’s too much there to contemplate, so we’ll often just shrug and say “nothing,” because we can’t tell exactly what you want us to talk about. We need specifics.

It’s also possible that he’s not aware that he’s worrying. I’m on some anti-anxiety meds now, after trying it forever without, and my anxiety levels are so much lower now . . . I mean, even lower than the times when I thought I was relaxed!

Otherwise, have you heard of the calming effects of weighted blankets/vests? Oftentimes, aspies crave what’s referred to as “deep pressure.” It’s a kind of sensory stimulation, and it’s very calming for us when we get it. Have you read Temple Grandin’s book, “Thinking in Pictures”? She talks about it there. They make weighted blankets and vests specifically for the purpose of helping those with sensory processing disorder (what it’s usually referred to, but I’m personally of the mind that you don’t have to be dxed to have traits of it). They also make weighted vests for people who do weight training, and while they don’t look as pretty, they can sometimes be found for about half the price of the “official” ones. My mother bought me one for my birthday. I haven’t gotten it yet (I’m in grad school in Texas, and she’s in North Carolina), but when I do, I’ll be sure to write about it.

You can compare, if you want (I’ve also got these and more linked on my site):

– specifically for SPD, but expensive (and looks good!)

– not cited as being for SPD, but is the same thing as the other one, only it has no special look and costs about 50% less. This is the one my mother bought me.

One thing about it, if you go the less expensive route, you need to make sure that they are “adjustable,” that is, their weight isn’t set. Instead, they should have little weight inserts. Really, I think on kids the most that’s needed is like 3 pounds. And you don’t have to wear it all the time, but rather just a certain amount of time during the day. And then, if he has a meltdown or something close to it, he can put it on and it should help calm him down.

If you look in the patent information for weighted vests (I’m thorough, what can I say?), you can see that it says that weighted vests are good for this kind of thing: Patent Info. I think it’s under the description of vest #10 . . . if I’m remembering correctly. But if you do a search in the doc for “autism,” I think you should find it no problem.

Often it feels as though my inner emotions are floating just at the outer edge of my skin, or it feels like gravity has no hold on me and I could just float off the ground–which is a nervous sensation when you’re trying to fall asleep.

Asperger’s has traits of OCD, which is more of the atypical variety, because there are very few compulsions, and numerous obsessions. It’s often impossible just to turn off your brain. Plus, puberty is another thing that has a profound effect on aspies (much like everyone else, but sometimes worse in different ways–what with the hormone changes, since aspies are more sensitive anyways).

Aspies also have problems spotting things within their systems–like sickness, specifically stomachaches–until they’re at a pain level, and this causes some anxiety/discomfort that is sometimes hard to nail down internally. You just feel off, but you can’t say why. So in addition to my suggestion about weighted blankets, here are a few other things that might help:

-Relaxation routine (you mentioned something, but you didn’t say exactly what) that involves a tension-release routine. That is, he tenses up one part of the body (say arms) really tight and holds it for about 5 seconds or so, and then releases. Then he does it again. And then he moves onto another part. They make guided cds for this. Not only does this help me relax, but I wake up feeling good too.
Hot tea in the hour before bed (but no sugar) – helps relax from the inside out, but doesn’t have the problems of the sugary high that cocoa brings. Peppermint tea is really good for this. Helps relax the stomach.
Heat. Like a heating pad, only I know something that’s better. It’s called a “Bed Buddy.” However, you don’t even have to buy this. I know something even better if you have even minimal sewing skills. If you make a little pillow (two pieces of cloth and sew together), and fill it partially with rice, that’s all this is. Then you can stick in the microwave for 2 minutes-ish, depending on the size, and it’s portable and warm for an hour or more. And warmer than a heating pad. Moist heat.
Hot shower (notice a theme here?) – before bed and make sure he focuses on some deep breathing, to help relax all those things that aren’t supposedly tense.
Journal writing – A good way just to get out some of those thoughts–try free writing, make him write for say 5 minutes without stopping, eventually crap comes out that he might be worrying about (might not) . . . but make sure he keeps writing something, even if it’s just one word over and over.

Have you ever looked into music therapy? To find one near you: click here. And there are more links on my site–lol. Music therapy is a type of therapy that helps treat the entire person, in a non-invasive way. I think for aspies, music therapy’s main two benefits are the release of otherwise unspeakable/nameable emotions and then also some extra social skills training (they often do this through drum circles; an experience that requires some give and take on the parts of those involved).

Of course, I’m in grad school for music therapy. On one hand, you could say I’m biased towards it; but on the other hand, you could say that I just know what I’m talking about. Also, music therapy has been shown to especially have a good effect (usually–there’s always the exceptions) for people on the autistic spectrum. Besides, music therapy is just fun. Here: Music Therapy FAQ

Even if you were to be inside his head, you probably still wouldn’t know what was happening. 😛 Our brains work a lot differently than NT’s (neurotypicals). We have trouble identifying stuff about ourselves. Self-awareness is a tool that is important to develop for aspies.

One other thing that’s important to know is that the beliefs/conceptions about aspies aren’t all true. The people studying us aren’t aspies. They only describe what they see/what they think is going on. Aspies are more complex than that.

Hmm, I wonder if you would mind if I turned this into a post?

And obviously that last answer was given!

I won’t post the entire conversation, but I think the parts that were included were good pieces. I’m thinking about starting up a section on my blog titled “Aspie Guide” or something like that. “Guide to the aspie?” Hmm, I’ll have to think on what to call it.

Who better than the adult aspie to tell how it is?

If anyone has any questions, feel free to email (found on sidebar) or post a comment, and I’ll see if I can’t get back to you pretty fast.

As for those of you worried about me from my last post, let’s just put it this way: the initial shock nearly killed me, but I think I’ve got it under control now. That’s not to say that there aren’t still things that drive me nutty about it, but I think it’s controllable now.

BTW, I’d like to thank both Casdok over at Mother of Shrek and Awalkabout for linking me in two different unrelated posts. 🙂 EDIT – there’s one more; it’s by a lady of the name nijimomma who linked my Imagine This (A Narrative on Bullying) post.

Whee!!!

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~ by lastcrazyhorn on April 9, 2008.

11 Responses to “Aspie Acceptance”

  1. Hi! I just came across your page, and I am so thrilled. My daughter is nearly 5 and was diagnosed as being on the spectrum a few months ago. She is an amazing child (especially musically and artistically) but we’ve felt first hand how ignorant many people are about ASD people, and feel like we are fighting against a general attitude that she needs to be fixed somehow. Reading your posts gave me some great information (I’m looking for a music therapist ASAP) , some great laughs (Slug Porn!) and brought tears to my eyes because you reminded me of who my daughter is and who she can become. I’ll be back here on a regular basis! Thank you for your great work here.

  2. These are some really good ideas that you have given this parent.

    Several of your responses to this parent made me think.Sometimes people say to me,”I wish I could be inside your head for 1 minute.” and I’m thinking, “Oh no you don’t!”This mode of tranportation through the galaxy was designed for me and I’ve been piloting it and I’ve been further designing the way it responds to it’s environment for 45 years.

    I don’t think anyone else would be able to indentify the beauty or danger that I’ve spent my life adapting to. No matter how complex this may seem to others,they will never need to be able to pilot any other mode of transportation other than their own. I don’t know why they would want to.

    I do think all the time.Of course the only context any of us has is how that compares to the experiance that others can tell us about but that none of us can truly know.

    The energy that I send out and the seemingly endless effort that is required to descramble all the beauty and the dangers of what I see is what I call life. No drug can aid in that process and as much as I may want to rest and I won’t truly rest until the process is through.

    Weighted blankets can send a single message of pressure that helps. Music can take me on a journey once I understand the pattern….but indentification of one’s environment is crucial to everyones existence.

    Being no longer autistic would mean that I would no longer need to go through all the processing that I do because I would see less….less beauty and less danger….. but I’m in love with the beauty….enough so that being careful of the dangers is worth it.

    The beauty that I see includes the beauty that I see in others and I’m in love with that beauty. Why would anyone want to take that away.

    Now whos gone on too long.:O Thanks, Ed

  3. Great post!

  4. Thanks for telling me about that code thing. I was kinda wondering why that wasn’t working…

  5. Thanks to everyone and you’re welcome Amanda. 🙂

  6. Hi! I just wanted to say what a nice job you did putting our “convervation” in blog form! And to thank you again for your helpful advice/information. 😀

    I’d like to address the comment Ed made about how people say they’d like to be inside his mind. I have said this many times in regards to my son, as I mentioned in my correspondence with lastcrazyhorn. Here’s the motivation behind that desire– I would love to know how my son perceives certain things/situations and in doing so, maybe I could better help him navigate his way through this crazy world. I think it would help me to better know how to calm him, how to explain things to him, how to encourage him in a way that would be more meaningful to him.

    In NO WAY do I want to alter who he is. My son is an amazing, bright, very funny, kind, and creative young man. If you took away his autism, it would change the core of who he is. Just want to make his journey through this life one where he appreciates the beauty of himself more and I just sometimes feel like if I could see through HIS eyes, I would have the ability to help him on that journey is a way that would be more effective.

  7. Joell,

    Please don’t think that I meant that I thought that you wanted to change your son or anything like that. I’m not an advice giver and if I ever was going to do that I wouldn’t do that on Lastcrazyhorn’s blog. I have only been a reader in the past and this is the first time I’ve commented here. There’s alot of great stuff written here.

    I think it’s obvious to this blog owner how much you care for your son. It’s obvious to me too..

    She thought your correspondence was worth posting and I was pleased to read it. I like hearing parents that really care about their kids as you so clearly show, write about that as you have.

    I’m sure that your son does see the beauty that you see in him and I’m sure it means the world to him. This will effect both your jouney’s in a wonderful way.

    I’m sorry if my comment seemed like I believed anything other than that.

  8. I think, if I read Ed right the first time around, he was referring more to himself and the difference that autism makes in his own life. Just my own interpretation . . .

  9. Yes, that’s an excelent interpretation.:) Thank you.

  10. You’re welcome. 🙂

  11. Hi Ed…

    I have just made my way back around to lastcrazyhorn’s blog. I just wanted to let you know that when I read your comment, I did not feel like you were giving me advice or thought that I wanted to change my son…not at all! Quite the opposite, in fact…I loved and appreciated your reply very much. And I am so sorry if my comment came across the wrong way. I was just resonding because I wanted to explain why some folks might want to get inside your head sometimes…in order to be more understanding of where you are coming from.

    In fact, I loved the last two paragraphs of your comment
    (“Being no longer autistic would mean that I would no longer need to go through all the processing that I do because I would see less….less beauty and less danger….. but I’m in love with the beauty….enough so that being careful of the dangers is worth it.

    The beauty that I see includes the beauty that I see in others and I’m in love with that beauty. Why would anyone want to take that away.”) and if it’s okay, I’d like to use it sometime. (I love to collect quotes!)

    Take care all!
    Joell

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