Anxiety, Fear and Guilt

Hey everyone!  It’s been a while since we’ve written–I’m sorry!  It’s been a pretty boring past few months, but the past few weeks have seen some changes.  I got an amazing new job close to home and have been adjusting to it, including a budget strain and being past due on EVERYTHING.  Next month Justin has his Social Security hearing and I am praying to everyone I believe in to help us out since he needs it!  So much of life is waiting, and I’m learning to appreciate every minute, like Justin does.

Recently, Justin’s car has been needing some repairs.  He’s amazingly talented at mechanical stuff (though he would never admit it), and has fixed our washing machine, dryer, my parents’ rug shampooer and can probably fix the TV that just died on us.  So he fixed whatever car issue (head gasket?  Valve?  Mainfold?  Hell, I don’t know) he had.  He had a counseling appointment on Friday, and hopped in his car.  He texted me to call him before his appointment and I knew it wasn’t a good sign.  So I did, and he said his car wasn’t working, it was smoking, and he was just about in meltdown stage.  So he drove it home, and the guilt and frustration ruminated all day.

I want to know if this is common.  Adults with Autism:  do they struggle with this much fear, anxiety, and guilt?  I know that anxiety is one of the biggest issues.  What makes him be so afraid of something that I have 100% faith in is fine?  He was already stressed and nervous (to the point of being sick) about going to the counselor he’s seen before a few times.  We’ve driven his car around a few times and it’s fine.  Nobody is giving him issues for missing an appointment or anything.  So what is it that makes him not be able to get out of his own head?

I struggle to help him with this.  I can’t make him understand that nobody thinks he’s a failure, or that nobody thinks he sucks for missing an appointment, and he’s not letting anyone down.  With his past and what he’s had to deal with his whole life, I’m amazed the guy can carry on a conversation.  He’s overcome so much.  He’s so freaking smart it makes me mad (lol).  He cooks, cleans, takes care of the house so I don’t have to, packs me lunches and encourages and supports me through everything.  He watches a video on how to fix a washing machine and he fixes it.  I’d still be staring at videos wondering which one to choose!  This dude is awesome.  Why does he think he’s a failure???

I’d love to hear some feedback about what you guys think.  Tools to overcome anxiety, fear, or guilt.  Do you or your Autistic loved ones suffer with this too?

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–Tara

Music Ear Porn

Justin wanted to share how music = stimming and what it means to him.  How many of you can relate??

 

Music has gotten me through more things in my life than a counselor ever could.  I learned that music has been a stim for me just recently, without even trying or meaning to.  All through high school, if you saw me, 99.999% of the time I had headphones on and a CD player in my hoodie pocket (PS, It’s Washington, everyone wears a hoodie!).   The only time I really didn’t have headphones on it was class or if I was hanging out with my best friend Daniel.

My favorite genre of music is rock/metal, but I’ll listen to pretty much every genre there really is.   I listen to Britney Spears, Slipknot, Lamb of God, then suddenly switch over to opera (yes, opera) or rap.  I grew up listening to oldies on the radio with my parents, and any time we went anywhere they would turn on the oldies.

Describing me and music is hard cause I love it, in fact I live for music, but I couldn’t  sing you one bit of lyrics.  I know the lyrics–I research what they mean and what the artist meant by them, but I could literally memorize them and the second the song comes on–lyrics gone.  I have no idea what they’re going to sing.  I think that’s part of autism, but man, it sucks!  I always tell my wife that I’m jealous because she can remember the lyrics to songs she’s heard once (jerk lol!).  But I’ll listen to one song maybe 100 times in a week and not be able to tell you one lyric.  I also get beats of songs stuck in my head, which is equally annoying.  I don’t know the beat to anything (and God help you if you need CPR, because I couldn’t remember the beat to Staying Alive if you paid me).  This also means I have zero rhythm.  I realize I’m a white guy, so it’s okay, but I can’t even remember the song I just listened to or its rhythm.  I’ve also been known to listen to a song and get one little second stuck in my head– like the way a singer will enunciate a word or sentence, so I’ll rewind and listen to literally like a second or listen to it 15 or 20 times.  It’s kind of strange, but I think that’s part of the stimming of music.

If I’m having a particularly annoying Aspie day (as my wife calls them), I will blast music–usually rock, and it helps me calm down or relax a little so I’m not as wound up.  Up until recently I didn’t even know what stimming was, and music helps so much more than I could ever think it would.

–Justin

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What do you guys think?  Music has helped me a lot too, but I can only imagine the ways it helps my Aspie husband.  Do you stim with music?  Leave me a comment!

–Tara

Traveling with the Aspie

We don’t travel much.  Actually, neither me or Justin have ever been on a plane (or a train).  We do love to explore, though, and we often go for drives just to get out of the house.  We start getting crabby with each other if we don’t.

Since we are childfree (by choice!), we can go anywhere at any time and explore the amazing state of Washington without any problems.  We love to just get in the car and go.  But traveling with Justin has its issues.

Justin has a routine before we go anywhere (even the store).  He probably doesn’t realize he does, but I certainly do.  They say the women usually take longest to get ready, but I beg to differ!  He has to make sure he has the right shirt and pants and belt on, make sure he has the right hoodie, get his shoes, put on cologne, then smoke.  I can’t stand and wait for him, or he feels like he’s rushed and it annoys him (sometimes I am rushed, which I’m working on).  Once he’s finally ready, then I usually get ready, because chances are, he’s forgotten something in his routine, and he has to do it or he gets crabby.

We all know by now autistic people have routines and they have to abide by them or they tend to get irritated and that’s when meltdowns can happen.  But I wonder if this is something that all adults with autism struggle with?  Just leaving the house–does that require certain steps or they just can’t handle it?

Once we’re finally in the car, it’s usually me driving (hello, no DUIs here).  I get comments from him–a lot.  He probably doesn’t realize it, but he will make a lot of comments on the way I’m driving or ask why I don’t take certain roads or why I’m hitting the freeway instead of going through town.  Sometimes it really irritates me–but I remember that this his brain is probably just a little weirded out because it’s part of his routine to go a certain way or drive a certain way.  It’s his Aspie routine, and that’s how he likes it!  It doesn’t piss me off or drive like an ass just because he commented, but I’ve noticed it’s usually every time we drive he will comment on something that’s unusual or unexpected of him.

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I know Justin stresses a lot about driving, and he doesn’t drive by himself much.  He’s constantly stressing that his car will break down (even mine, which is completely under warranty and only 4 years old) and it’s the unexpected-ness of it that really freaks him out.  We’re hoping we can find him a specialist to help with this stress and worry he tends to have.

At any rate, I’m curious what it’s like for other Aspies out there to travel.  What is your routine of leaving like???

–TARA–

Older Diagnosis

From the mouth of the Aspie!  His thoughts on being diagnosed with autism at age 35.

Older Diagnosis, is it worth it???

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I’ve read some articles and peoples’ opinions about if it’s worth getting a diagnosis at a later age versus younger age.  I say hell yes!  Sometimes I hate my diagnosis, I still think it helped me more than it hurt me.

Being diagnosed really helped me understand a lot of my life. It helped me not feel so bad about high school because it was a damn chore for me.  I was either passing out due to stress or just skipping school in general.  So it helped me not feel so guilty.  I used to feel that I was lazy in high school and that I wouldn’t live up to what I thought I could.  But now I know it was due to the autism and learning disabilities that comes with it.  I eventually did home school and it was so much better!  I actually learned and was able to understand and get assignments done (though I was one credit away from getting my diploma).

The diagnosis also helped me understand certain feelings and meltdowns. For a while, I got so annoyed and pissed off at myself when I would have a meltdown.  I knew it didn’t do any good or help anything, and I thought I was just a brat.  It also explained some of the things I feel.  Every once in a while I have a feeling like I need to flex every muscle in my body–I’ve heard it’s sort of like restless legs, but restless everything.  Now I know that I need to stim and that helps a lot.

The diagnoses helped me to understand why I had so many fears and stresses.  Some days I get so stressed and worried about driving even if it’s only 15 minutes away.  It’s dumb, but I stress.  I worry that a deer will jump in front of my car, a tire will blow, I’ll get a ticket, etc.  If I have someone with me it makes it much less stressful.  I will usually always drive when my wife and I go somewhere, and I have no problems.  I just need someone to be with me in the car.

I know I don’t think correctly and I don’t give myself enough credit.  Part of autism is just that–not thinking correctly.  I’m working on it and I’ll continue to work on it.

–JUSTIN–

Physical Touch…the Aspie’s Archnemesis

I asked Justin to write what he feels and thinks about, as most of you know.  He wanted to talk about physical touch and what it feels like from their point of view.

Physical touch what’s that????? really EWWWWW

No really, I don’t understand physical touch.  To me, it just doesn’t really make sense.  I’ve never been one to hold someone’s hand or hug them.  Even in a moment of sadness I just kind of stand there awkwardly saying what can I do to help.  I know I look insanely awkward,  like I want to run the fuck away, but also understand I don’t want to be a douche nozzle. For me it’s really hard to explain why physical touch is so foreign and odd. It kind of feels like someone who touches me could control my every move, and before you say “Obviously, that can’t happen,” well, no shit.  That’s one thing that’s funny about autism.  I am incredibly smart and I have an insane memory about things that I am obsessed with.  But you’re also stuck with these things you do that you know is dumb and not true. Like no shit someone can’t control me they’re not Luke Skywalker.

If I’m having a meltdown, touching me is the worst.  It’s like a hot poker wherever I get touched—even if they’re trying to be comforting.  I start sweating and start to almost stress, because I’m not sure how to react.  This is also what it’s like if you randomly touch me—it almost startles me.  I know you aren’t doing it to be an ass, but it is a little weird to me.  I feel horrible with my wife cause I know she wants to hold hands and touch, but it is so insanely foreign to me.  I think she’s to the point now she does understand and knows I love her (obviously).

People also don’t understand how scary someone touching you can be when you are surrounded by noise and chaos even if things can be calm.  For example, my wife’s boss took everyone on a day cruise around the Puget sound where we live. We were on the top deck surrounded by the other employees she knows well.  Everyone was talking and moving and having a good time.  Their faces were different to me (even though I met them all), but I’m so focused trying to block out everyone else it’s overwhelming.  It can also be scary in public because I don’t know how long to stare at you before I am creepy Justin and you start getting weirded out.

I don’t know what to do with my hands, so I fiddle with my phone, goatee or anything.  I don’t have any idea what body language means—it’s definitely a different language.  If my wife wants  a hug or cuddle she pretty much has to just say “I want a hug, dummy,” before I get it.  If she tries to hug me or flirt with me I’m just like uhhhh….hey, what are you doing?  She has gotten to understand she just has to say it.  It’s almost like knowing only half the language of a place you’re visiting.  Like you know enough to kind of get around and ask where the bathroom is and stuff, but you don’t really know how to speak more than “Where’s the library.”  There are also times someone will say something nice to me and I brush it off its usually cause I had no clue what you were talking about at the time.  My brain processes some things fast and some things I take forever to get.  I also might hear you tell me a joke then when I get home I finally get it, and laugh randomly, scaring the hell out of my wife.

TIP:  If you’re hanging around someone who’s autistic and want to hug them or touch them, just ask.  Physical contact can be tough, so it never hurts to ask them.Capture

Autism & Loneliness

Hello everyone–happy new year!!  So sorry for the delay in blogging.  The holidays and everything else that comes along with them really threw us off !Capture

Justin wrote about loneliness and Autism–something that a lot of people don’t understand, I think.  I hope you enjoy reading about it and can relate! I know I can.  I’d love to hear your thoughts about this and if you struggle with this.  What do you do?

Loneliness is something that comes with autism; at least I feel it does. It sucks to be surrounded by people who love you, but you are too scared to even speak to them or even approach them. That’s how I am.  I have an older brother and an older sister who I look up and love immensely, but if it wasn’t for my wife, I couldn’t speak to them.  I get too scared to talk to them, which is ridiculous because obviously they love me.  But as soon as they walk in the room I shut down.  I’ve scripted conversations in my head to them, ask them questions, tell them I want to spend more time with them, but then I actually see them, and I shut down.  I can’t speak.  My brain stops me from being able to do anything, so I start talking about random shit that doesn’t make sense or they don’t care about.

This is when I really understand other autistic people when they say you feel like you’re on an alien planet.  In social gatherings, with people I know and love, I feel insanely lost and start sweating.  I just don’t speak at all, and then they probably think that I’m mad or irritated, which is definitely not the case.  Sometimes I just want to crawl into a cave when I feel like this, or hiding in the corner.

It gets worse when I don’t see them often, too.  I lived with my mom for about 30 some years, and when I’m around her, I don’t really know what to say.  She loves to talk, so she usually does, which is great, because I have no pressure to say anything.  This is like this with my best friend.  We’ve been friends since grade school, but I don’t see him enough, and then when I finally do, I feel like an idiot because I don’t know what the hell to talk about.  I end up just being quiet and being weird.  Thankfully he’s weird like me, so he doesn’t care, but I feel stupid.

I love reading and biographies are one of my favorite things to read.  One of the most impactful things I’ve read about musicians’ biographies are that they can be surrounded by people and want nothing but the best for you and love you, but you feel like you are completely alone.  That’s one of the biggest reasons I want counseling; I want to get over this.  I’m sure I’m not the only one that feels like this.

Does anyone else struggle with this?  How do you overcome it?  What do you do?

Aspies + Weed = True Love?

I wrote a blog post about weed before, and how much it’s helped Justin’s life.  We were both anti-pot when we started dating, but since it became legalized here in Washington, we both tried it, and I cannot begin to express how much it’s helped both of us (I can finally sleep).  I asked Justin to write what it’s like from his perspective.

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Weed, marijuana, pot, green, dope, Maryjane, whatever you call, it I couldn’t imagine my life without it now. All my life I was straight edge.  I’ve never even been drunk to this day and I just turned 35. I had only tried weed twice before I really started smoking it regularly 2 years ago. I have recently been diagnosed with autism which doesn’t bother me; I am still me, but I stress 24/7.  I worry about shit I shouldn’t, but with weed, I take one hit, and boom–that worry goes away. Not only that but I am more open and can talk to people I may not know as well.

Weed has saved me, honestly.  I’ve lived in Washington state for my whole life.  It’s beautiful here.  Forests, waterfalls, national parks, etc, and so much to explore.  When I was younger, I never explored.  I stayed inside and just played video games.  Since I started smoking pot, I wanted to LIVE.  I wanted to get out and start seeing this state, and explore, and we want to travel.  It made me see that you should stop caring about cell phones, TVs, internet, and realize it’s bullshit that’ll just hold you back.

Before I started weed I had a hard time telling my wife she was gorgeous or that I loved her just because stress or just forgetfulness. With weed, I tell her all the time.  I tell her that she’s hot right to her face, which is hard for me and was hard for me.  Weed takes away my “What ifs.”   Since I’ve been smoking weed, it has improved my mood and helps control my melt downs a little.

Weed also helps me with my eating—which can be helpful for parents with autistic children or teenagers.  I used to be a really picky eater.  Since I started smoking, I realized there are so many different types of food out there and I love to try new recipes—something I NEVER did when I was younger.  I also discovered I love to cook. I also can realize talents I have like mechanical work that I never felt like I had confidence for.

It also helps me focus on tasks.  Before I started smoking I would want to cross stitch, play games, watch a movie, and about 10 minutes into it, I’d start getting distracted and start thinking about 10,000 other things and never finish what I started.  With weed, it keeps me focused on just one task, and helps me finish.

It really bothers me when people who smoke weed are labeled as lazy.  What about people like me, with a brain issue that I can’t control?  With weed, I’m the opposite of lazy.  I can finally focus on things and relax and be myself.  I can also tell you this is not a “gateway” drug.  Tara & I have both been using pot for our issues, and neither of us have had a desire to start shooting up heroin or snorting coke.  She gets high and goes to sleep (wow, dangerous), and I get high and start being creative.  Yeah…really a scary drug, for sure.

I’m not saying everyone should start smoking pot, but from this Aspie’s point of view, pot honestly saved my life, and probably my relationship.  If you or a loved one is struggling, try it.  It might save their life, too.