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

Older Diagnosis

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

Older Diagnosis, is it worth it???

Diagnosis1-1

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.

pot

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.

Justin and Our Relationship

I love Justin.  He is my everything.  I asked him to write a blog about our relationship, and here is what he’s got to say.

Relationships

Yikes.  This topic is harder for me, because it’s more emotions, and as I am learning, I don’t know much about most emotions. I look at my relationship with Tara, and I feel like it’s something completely different from every other relationship I’ve ever had.  I can’t explain it, really–I guess it’s the knowledge she was the one to marry maybe?  Insert barfing noise here.

I guess I am not normal in the terms of how I view my relationship. With Tara I don’t feel like we have a relationship—it’s deeper than that for me.  She is my other half and I mean that in the way it sounds. There are days where I have to go to the doctor’s or counselor’s, and I hate it because I don’t want to speak and I don’t want to deal with society. With Tara, I am not scared at all.  If I go somewhere and I am feeling a little overwhelmed, I don’t have to say anything to her at all.  She can tell by my posture and my ticks that I’m overwhelmed.

A lot of people wonder why we work together so well.  We have only been in two fights ever. My past girlfriends–no offense to them this is just how they work–wouldn’t say how they felt or what they wanted, and that’s hard for me, so we fought constantly.  I don’t mean to be cold, but if you don’t tell me or show me you’re upset, I can’t tell.  With Tara, she’ll just tell me when she wants a hug or to be comforted, and it doesn’t bother her.  She doesn’t expect me to be a mind-reader.  Physical touch and hugs can be uncomfortable for me (more on that later), but I’ve gotten a lot better with her.

I use this story as an example: I was at my now wife’s house when we were dating.  It was close to my birthday, and she was framing my present.  I went over to her house and apparently it was on the ironing board right when I walked in.  Her heart sank and she thought for sure that I had seen it.  Well I was so focused on my phone or the floor or whatever that I didn’t even notice.  I had no idea and never even saw it.

I don’t think I could put my finger on just one thing in our relationship that makes it so successful; there are a lot of ways that we work. I want to expand my world, and she helps a lot with that.  I used to be one of those people that stayed in my house all the time, I never went to parties or really did anything outside of family camping, but Tara makes me want to get out and explore the state.  She helps me feel safe.

Another thing that’s hard for me is finding or picking something out. For example if we are going out to eat if Tara says where do you want to go my brain immediately things of every restaurant within 100 miles of us and that is insanely overwhelming, so it’s easier for me if she says what she wants or narrows down the choices.  Sometimes if I can’t decide where to go or what to eat I just don’t go out or I end up eating the same stuff I’ve had for a week.

I just love her.IMG_8749

Stimming & Justin

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(Us on 10/7/2017; at one of the most beautiful places in Washington state–Twanoh State Park)

I asked Justin to write a blog post about stimming.  We watched the movie The Accountant, with Ben Affleck, a while ago, and he does the stimming where he racks a piece of wood on his shins listening to hardcore music for 10 minutes.  I didn’t really get it.  From a neuro-typical point of view, it looks crazy.  This apparently is called stimming, which is sort of a self-soothing/stimulation thing for Aspies and Autism-spectrum people everywhere.  I don’t really notice now when Justin stims, and I know it’s something he needs to do.  His stimming behavior isn’t too out of this world–he just gets lost in music or does 15 things at once, and it seems to help.  I found a really good article about it:

Autism & Stimming

I recommend reading this.  It helps to understand why they do this & that it’s normal for them.

So I had Justin write about it, too.  Here’s what it’s like in his world.

 

Stimming From An Aspie’s point of view

Have you ever watched a really, really good movie that keeps you on the edge of your seat the whole time?  Or read a mystery novel that you just can’t even?  You know that weird tension you feel where you feel you gotta keep bouncing your leg or move to the edge of your seat, or just can’t sit still?

That’s how autism feels some days.  All day.  ALL DAY.  It’s not regular.  Some days I wake up just fine, and some days I wake up feeling like I want to run around the block 17 times.  I feel the odd tension and just have this weird energy.  Some people with Autism shake, or rock back and forth, or flail their hands and legs and arms.  But it’s only temporary.  I didn’t know what it was until recently, and it’s stimming.

Apparently I’ve been stimming most of my life.  For me, loud music is my go-to.  I don’t really care what kind of music it is (not screamo or anything like that), but I just pick the song or station, blare it (sorry, neighbors) and it takes me to a totally blank place.  I don’t feel my whole body, and I don’t have my usual billion thoughts.  I just feel better.  But sometimes I feel emotional afterwards, which is weird, and feel like I need to cry.  I haven’t figured that out yet.

Multi-tasking, or doing 10 things at once helps me too.  While typing this up, I also have a YouTube up with a football player’s biography and another YouTube up with my favorite band Korn playing in the background.  Some people can’t do this (my wife, for example), because it’s too much at once.  But it helps me a lot.  I am only focusing all my thoughts on this writing, but I also can hear all that and focus on the writing at the same time.  I also can get completely lost in researching things.  My wife told me about Chernobyl, which I had never heard of until I met her.  I got obsessed with learning about this, and spent hours losing track of time and completely sucking up all information I could find on this topic.  This was me 24/7.  I barely did anything else (except the music and other stuff in the background, of course!).

Up until I married my wife, I thought everyone could do this.  She can’t have anything on while she’s focusing, like on homework or something.

So if anyone you know is autistic or has Asperger’s and flails their hands or taps, that’s usually why.  Stimming helps us a lot.

 

Be patient with those who have this behavior.  You know how that anxiety can feel, and they feel it worse than the neuro-typical.  Don’t shame them for it, and just let them do what they gotta do.

Do you stim?  Do you know others who stim and what their self-soothing behavior is?  Share with us. We’d love to hear how others tackle this.