You Never Know Who is Listening.

So, it’s been a while but, today is World Autism Awareness day so, I thought I would pop in to say a few things.

Today I have seen countless posts concerning loved ones being diagnosed with ASD. The most common phrase I have seen is “my child/nephew/niece/etc. doesn’t fit the mold of what I thought Autism was” Autism, in my opinion is one of the most misunderstood diagnoses. Everyone knows someone with ASD and every single case is different. There are similarities between them but, no two people are the same.

That is what Autism awareness means to me. Everyone is aware of what Autism is. Most just don’t understand what it means. It can mean verbal OR nonverbal. It can mean an inability to handle change at all, or simply slow to process it. It could mean an inability to ever be self-sufficient or, it could mean living life to the fullest completely independently. Or anywhere in between.

Once you have spent time with people on the spectrum you can see characteristics in everyone around you.

There is a man on the maintenance/janitorial staff at my work. He doesn’t speak to anyone or make eye contact. Several members of the staff have complained that he is rude and doesn’t understand personal space. A few weeks ago I heard  a couple of colleagues making fun of this young man calling him weird because they found out that his giant headphones he wears everyday only omit static and not music. (That was the moment when I went “yup that makes sense” in my head) Fast Forward to last Friday. While I was outside on break, a member of the janitorial staff was speaking to another colleague about this man. His coworker was complaining that he doesn’t talk to anyone (not even the boss) and he has the tendency to be very “OCD” and slow. The woman she was talking to said out loud “I think he is retarded.”

I stepped in, because well..that’s just who I am. I stated that from what I have seen in my not so expert opinion he seems like he is on the spectrum. I was then told that “people like that” shouldn’t be allowed to work here. I snapped back that my husband is on the spectrum, has a full time job AND, is a fulltime student. I was looked at like I have 3 heads.

Why is it so hard for people to understand that just because someone is different, that doesn’t mean they are incompetent?

Neurotypical individuals need to strive to be more aware of Autism. Aware that it exists in countless forms all around them and, aware that you are never out of ear shot from someone on (or around) the autism spectrum.

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My Husband My Hero

We were lucky enough to be a part of a small intimate wedding of two dear friends last night. When introducing my husband and myself to someone one of the groom’s said “This is Niki, and this is her Husband Ryan. He is her hero.” It was a phrase I had never heard any one use to describe us but, it is so true. Ryan is my hero.

He is unwaveringly loyal to those he cares about. If he wants you in his life he will fight for it. He has an overpowering fear of confrontation and he fights it every day. He fights for himself and he fights for those he cares for and I admire that quality so much.

Ryan is also the most genuine person I have ever met. What you see is what you get. I strive to be that way. When I feel unsure of myself I often think of him. He is a metal music loving, anime watching, video game enthusiast and he will apologize to no one for it. I don’t like to admit it because I fancy myself wonder women but, this is an area in which I struggle. (I wonder how many people will see the subtle obscure pop culture reference in that line) I try to walk through my life with the confidence that Ryan does.

I could go on and on and on. He is inspiring and extremely brave. My goal within our relationship is to constantly lift him up. Support him and help him become the best person he can be. If I am being honest, it doesn’t take much work on my part. He has this want and need to strive for greatness. I am just there to catch him and steady him when he stumbles.

It is a job I gladly do. To even feel as if I am helping him is an overwhelming feeling of accomplishment.

 

I have been avoiding this blog for a few weeks because I don’t want to write yet another angry rant. Unfortunately at every turn Ryan and I are experiencing a rather unsavory snap judgment.

My Husband is on the spectrum. I am not. This seems to be a sticking point for people. Particularly people who know others on the spectrum. So my question to you is: Do you know the definition of SPECTRUM? My husband is not your nephew. My husband is not your cousin’s aunt’s daughter. My Husband is not stunted, he is not in any way less intelligent or less anything than I am. He simply processes things differently. My Husband is not Sheldon. That being said, when watching the Big Bang Theory do you find Amy to be a pervert? Do you think it is disgusting that she is with someone on the spectrum? Is she taking advantage of him? Is she taking the place of his mother?

 

I am going to assume most of you would say no. If that pairing of a neurotypical and someone with ASD doesn’t bother you then why exactly does my relationship?

I know the answer to this. It’s because I am outgoing, and commanding. I like things the way I like them. I make black and white decisions and I don’t apologize for them. I tend to use pronouns like I and me instead of we and us.

Despite what people think I don’t force Ryan to do anything. I may say “I decided” But, you can ask him. I don’t make decision regarding us and our lives without consulting him.

I would be lying if I said that he didn’t let me make the decisions sometimes. We also have an open dialogue. Even if he wants me to decide I don’t let him off the hook that easily. He has to communicate his opinions with me.

I quit my sessions with a therapist I have been seeing for this recently. She literally referred to my husband as my child. She said to me” You don’t want to have a child because you will automatically be a single mother of 2” She has never met my husband yet, she assumes that he is incapable of caring for himself. Not only does he care for himself, I know that when the time comes he will be a caring and capable father.

The insult that people like my therapist is slinging towards me is infuriating. They assume our relationship is simply controlling, loud, Niki calling the shots and making poor, stunted, Ryan do everything she wants.

That makes me feel like garbage because it is exactly what I strive to prevent. It is EXACTLY what his mother has accused me of from the beginning of this relationship.

But you know what is worse? Implying that Ryan is less than. Assuming I am controlling and forcing him implies that he is weak and pathetic.

Ryan doesn’t do anything he doesn’t want to. Believe me. He is a stubborn ass sometimes. Wait till I tell you about the time I told him he should cut down on caffeine since he was having trouble sleeping…

I am angry about the accusations that I am forcing my husband to be in a relationship with me but, Ryan is hurt. It is causing a dip in his self-esteem. My Husband deserves better than this! He deserves to be seen as the strong, loyal, caring person he is. Not as Autism with a side of Ryan. And not as what quiet Ryan plus loud Niki looks like in your head.

People are Full of Surprises

Why is it that we always expect the worst? Is it just easier to have low expectations? Or, is it because realistically most people show their worst side in stressful or complicated situations? I tend to see the worst in people. Probably because I view myself the same way.

Ryan’s ASD has never been discussed until recently. His mother kept his diagnosis hidden and it took him until a year or so ago to admit it even to himself let alone anyone else. Some people started getting “hints” when he ran for school board and autism/ neurodiversity was his campaign platform but, even then he only spoke to strangers about his experience. This past week he finally had a conversation with his best friend, brother and his father about his diagnosis. His best friend and brother had seen the school board flyers so it wasn’t a completely out of the blue conversation (also thanks to my blog).

 

His father however, had no clue. His parent’s divorced when Ryan was very young and his dad wasn’t around much. Mostly because he was an alcoholic. But, since we have gone no contact with him mother, Ryan and his father have grown closer and developed a relationship unlike anything they have ever had before.

We were invited to his Dad’s housewarming party last weekend and it was probably the first time at a family function we were accepted and no body prodded us about his mother. When we left the party Ryan said to me “I think I need to tell dad about the Autism.” Honestly I was shocked. First of all Ryan won’t tell anyone anything unless he absolutely has too. Second, his fear of confrontation runs deep and by deciding to do this he was walking into it head on.

I was supportive. I offered suggestions on how to explain things, offered to be there or not be there if that made him more comfortable and, suggested we stop over the following weekend when we were in the area visiting his grandparents to ensure Ryan didn’t lose his nerve. Well Ryan got sick and, we didn’t want to infect the grandparents with his germs. When Ryan called to let him know his dad forced the issue and wanted to know what he wanted to talk about.

Surprise number two, Ryan actually explained everything to him over the phone instead of shutting down and deflecting like he normally does. I wasn’t in the room for the conversation. Which I think is for the best. Ryan explained the story in his own words.

After about 15 minutes Ryan came out into the living room with tears in his eyes. He looked at me and said “Dad doesn’t care…he loves me anyway” My heart was full and broken at the same time. Full because his dad saying those words to Ryan meant so much to him. And broken, because part of him actually thought his dad would stop loving him.

Nothing that his father has ever done would suggest that he would disown his son but, because Ryan was brushed off so much in his life he assumes everyone is just one conversation away from being left behind. His father is far from perfect. He was absent most of his life up to a few years ago and hasn’t always made the best decisions but, when people criticize him I think they forget that when his mom stepped out his dad stepped up. It doesn’t make up for the things he has done in the past but, the fact that he is trying speaks volumes.

I hope that our family and friends continue to prove Ryan wrong. I truly hope that everyone can see that autism is simply a part of Ryan. Ryan has autism, autism does not have Ryan.

Autism in Love

If you have a Netflix subscription you should watch the documentary entitled Autism in Love. It follows 3 autistic couples/people though finding love, being in love and, sadly, loosing love. I really enjoyed the movie but, I have one minor issue with it. Not a single person was in love with a neurotypical. It’s not really an issue. I just didn’t feel like it properly represented relationships like mine. I began to wonder if there are other relationships like mine. There has to be right?

I began to research and quickly stopped. The first article I came across listed “idiosyncrasies” and issues a neurotypical/ASD relationship would face. It pretty much ended by saying a neurotypical would get frustrated and leave because they would never have a normal sex life. This instantly infuriated me because, the entire article was misleading. It also completely ignored that whole SPECTRUM thing.

I know that every relationship is unique but, I would like to see more like mine. ASD doesn’t make my husband incapable of love. It simply changes the way he expresses it to me. Sometimes he can’t. Sometimes he shows me in unusual ways but, he never stops trying.

When I speak to people who have never met my husband and I use the word “Asperger’s” or “Autism” the look of disgust on their face is hard to miss. They assume I am married to Rain man, or Arnie Grape from “What’s Eating Gilbert Grape” My thoughts on this? Even if I were, screw you!

ASD is still so stigmatized but, ask anyone who knows someone on the spectrum. They can point symptoms out in everyone you know. Meeting my husband for the first time, when he was 16 years old, I thought he was shy and a nerd. That’s it. Then over time he stayed shy but he became my nerd.

We were friends, very close friends, for the first 5 years we knew each other. And in that 5 years he never said anything about autism. Nothing about Asperger’s and, nothing about his diagnosis.

His mother had him tested around 5-6 years old and ignored the diagnosis. So, he had to deal with being different on his own. It wasn’t until a few years ago, on that car ride home, that he even admitted it to himself. Another year until he talked about the tests and the results that he remembers.

He told me recently that he asked his mother about the diagnosis once. He was 18 years old. When he asked her why she didn’t get him help she told him “it wasn’t the answer I wanted.” That’s it. That’s all she said. (I can feel all of the ASD parents and loved ones raging. I am right there with you)

I guess I understand that it was a different time but, for the monster in law, it was something else. It was pure narcissism. It didn’t matter because it didn’t affect her. Though I have to say, it surprises me that she didn’t take advantage of the prime moment to play the victim. If playing the victim was an Olympic sport she would win the bronze (not the gold, she would get too much satisfaction.)

Aside from it simply not being important to her, I also think her motive was to stunt him. To keep him from developing social skills so that it was easier to keep him with her forever. When his older brother got married she threw a fit. When Ryan and I got together she threw a fit…. well more like a nuclear bomb sized fit. In her eyes her son’s only purpose in life is to serve her. Keep Ryan from getting help, keep Ryan from ever leaving.

His mother wanted him medicated. She wanted a disease or disorder that a pill could cure. That way, she could play the victim but also, put zero effort in. Years after the ignored diagnosis he was on so many dangerous medications (prescribed by a doctor unaware of his diagnosis) that he tried to kill himself. Several times between the ages of 9-13. 37 times to be exact (that he can remember) Considering his upbringing and his lack of intervention it is a miracle he survived and thrived.

Daily, I am impressed and in awe of the man that Ryan has become without any help. He developed his own way of living and developed coping mechanisms all by himself. They aren’t always perfect of course but, it is extraordinary. He became a great man in spite of all of the hard work his mother put in to make sure it wouldn’t happen.

The Realization

My husband is the kindest soul I have ever met. When we met, he was 16 and I was instantly at ease with him. He didn’t judge the 20-year-old girl in front of him going through a MAJOR tragedy and the beginning of a pretty impressive slut phase. He is unique, I have never met anyone else like him. He cares so deeply for everyone around him. He is hilarious, sarcastic and, probably the biggest nerd I have ever met.  He is also autistic. He has been quietly developing coping mechanisms and wondering what is wrong with him for his entire life. He was diagnosed around 5 years old and he has faint memories of the test and the doctor but, after that nothing was done. We had known each other for 5 years then been together about 1 and a half before we ever discussed it. It was another year before he told me he was formally diagnosed as a child.

 

Communication is not Ryan’s strong suit. Though honestly, it has always come easier for him with me. Even when we were just friends he confided in me things he had never told a soul. I always knew that he was tight mouthed so it felt like we were always connected somehow.

 

I have a very dear friend that has a beautiful little boy who is also on the spectrum. When Hub’s and I started dating he began spending time with them as well. They hit it off instantly. AJ calls Ryan “Mr. Ryan” and wants his undivided attention at all times. This works in my favor because it allows for girl time with Christine. Something we do not get often enough. I credit Christine and AJ for starting the conversation between Ryan and myself and also later down the line helping Ryan figure out what to do with his life.

 

We have spent a lot of time with Christine and AJ. Also, Her husband Frank and their newest addition little Lizzy. I can’t pinpoint the exact time but, while Ryan and AJ played, a pregnant Christine, Frank and I began discussing autism. When they realized AJ was different, the tests he went through, the help he has gotten since and Christine said something that triggered my brain. She said something like she believes Frank and herself are on the spectrum as well and that it helped them understand AJ’s diagnosis. That got me thinking about how, while Christine and Frank have their quirks, I don’t think they are different or weird. I guess I never really thought of autism as a spectrum that went to such a high functioning level. As we sat their watching Ryan and AJ play, I started seeing the similarities between them and the similarities between Christine, Frank and Ryan. This is the first time the words Ryan and autism came together in my mind.

 

On the way home from our visit with Christine and the family, I brought up the conversation about autism we had had. Honestly, I was expecting a typical Ryan tantrum. I was sure he would shut down what I was saying then shut down all together and dive into his video game for the evening. Instead he said “I think you are right.” Now, for full disclosure, Ryan claims this is when he told me about his formal diagnosis but, I have no memory of that (and believe me I would-it’s an awful story) So we began talking about it openly.  I start to realize that if I wanted to avoid Ryan shutting down and shutting me out I had to approach issues within our relationship differently. Ryan and I have been through a lot throughout the years. He has struggled so much and I wish I could take some of the pain away for him. But the moment we began communicating about his autism, our relationship and his ability to cope with change improved immediately and continues to get better.