Sunday, October 11, 2015

My Husband DOES Have a Disability Even if He's NOT "Disabled:" Understanding Autism

Autism. It's the scary, dark shadow hiding behind the corner waiting to jump out and snatch your children from you. It comes in the night and there's no stopping it. After that, nothing is ever the same and you have to change everything.


Autism. It's not even a real thing. We're ALL on the autism scale, so whatever. It's not a disability. He's too "high functioning." They're "normal."

I just want to start off by saying NO to both of these extremes. The one is paranoia and the other is denial, and neither is very helpful. It can be hard to know what to say about autism. I hardly knew what to say or do before I realized how deeply it was affecting my family and my life. So, in my short, but rich experience of living with three, maybe four or five beloved family members with Autism for maybe my whole life, here's what I've learned:

First off, I'm totally going to do the dictionary thing so we can have a healthy framework to work off of:


1. Psychiatry. a pervasive developmental disorder of children, characterized by impaired communication, excessive rigidity, and emotional detachment: now considered one of the autism spectrum disorders. (click the link to read about more about how it's a spectrum, which does NOT invalidate the reality of any one clinically autistic person's experience and disability at all).
2. A tendency to view life in terms of one's own needs and desires.
1. a person with a psychopathic personality whose behavior is antisocial, often criminal, and who lacks a sense of moral responsibility or social conscience.
2. a physical or mental handicap, especially one that prevents a person from living a full, normal life or from holding a gainful job. (Even milder forms of Autism are in fact an Access One Disability because without intervention it DOES prevent them from developing normally and living a full, normal life. If they begin to get help before the age of 25 and especially before the age of 8, they often do remarkably well).
It can get confusing if an Autistic person develops an addiction early in life in order to deal with their disconnection from people (Research how disconnection is what fuels addiction and that's why 12 step helps so much). And then slowly, but often unintentionally stumbles into potential criminal behavior (they rarely, if ever, have actual victims. And when they do, they are almost always willing to make complete reparation and change). But I will tell you this: they have the strongest sense of moral responsibility that I have ever seen, refusing to excuse wrong behavior, and often criticizing what they hate about themselves when they see it in others. They can often develop a deep sense of insecurity and self loathing because they can sense all the ways in which they fall short and they hate it.

It IS a Clinical Disability, but it often does NOT have to be Disabling WITH Intervention: When I started telling people that my husband and probably my little girl (since it's very clearly genetic in my husband's family and maybe even in mine to some degree) were autistic, I was met with either the two above responses and more primarily the second. The first is the paranoia that often leads to the denial. I, myself, felt the same way before I realized that the person I love most in this world, my partner, my best friend, is in fact Autistic. Then, everything changed. Suddenly, we started reading and getting him proper therapy and understanding. I was no longer afraid of my children being Autistic because his Autism is actually a huge part of who he is and sometimes exactly what I love about him. No, I do not love him IN SPITE of his Autism. Although, sometimes I do. Sometimes, I also love him FOR it.

What is it like, being married to an Autistic person? It's actually pretty awesome a lot of the time. He's brilliant and loyal and sweet with this different sense of humor and take on the world that I just adore. He treats me like a princess most of the time, as he does with our daughter. He's committed and works harder and more effectively than most people. But sometimes, he can be very disconnected and I will feel lonely. When I talk to him about it, he'll try to understand or offer the same "too perfect" sounding apology and I know he'll probably still do it again. I'll often feel like he thinks he knows more than I do and that he'll never completely and totally approve of or understand what I do. For example, I love essential oils and they are enriching my life, but they were on his black list, and they will probably always be on his black list. It is either black or white and they feel a need to be harshly honest with you about their perspective, which is often different than most. But that's ok, because it teaches you to develop your own self-confidence. When you challenge them about doing something unhealthy and especially not understanding how you feel, they will often say "Well, I didn't know" and it's logically true even if it hurts. When I gently tell Matt that I wish he would notice when Aria, our daughter, needs help and just help, he will often say, "Ok. But you didn't ask." And you WILL have to remind them frequently, but then they'll absolutely do it. When you are sick or needing something, you must communicate it regularly and clearly, because otherwise they will NOT intuitively recognize what you need. They can talk non-stop about their interests without a very active audience, which is either comforting or extremely annoying because you can't get a word in edgewise and if you do, they probably won't hear it or they'll interrupt you (My mother-in-law suggests taking up knitting). They will very happily give you what you need with the utmost dedication once they understand, but you must communicate it to them. They actually feel and love more deeply than anyone I've ever known. They just don't know how to handle those emotions. A lot of people who marry Autistic people or become good friends with them are familiar with victim mentality or were abused as children, so Autistic people feel safe. They feel like home. Being married to someone with Autism is feeling some days like you ARE just going to pack up and leave if God doesn't give you a reason to stay, but He almost always does. The best story I ever heard was when Matt's mother, married to his Autistic father, realized a year in she couldn't live like this, so she packed everything up and her little baby Matt in the car and then realized there was absolutely no gas and no money to buy any so she didn't. I've been taken aback by how brilliantly Matt is responding to specific Autism therapy. He was taken to a store by his therapist and told to ask someone for help because Autistic people always struggle asking for help. And he did, and then he took me to another store and asked for help from three different people just to practice it.

Being a child of an Autistic parent is significantly harder. Because they will often see bits of the Autism in their own children and panic and try to beat or control or force it out of them somehow. They know it's hurt them and they know it's hard. If they've become overly controlling and aggressive as a compensation technique, they will often handle the rearing of delicate Autistic children all wrong and the cycle continues.

Autism is tricky that way, because what it is, is technically a "brain defect" but it's more like "brain difference." Remember how they used to draw a line between people with "Asperger's" or "milder autism" and severe autism? They don't really anymore because it's the exact same kind of brain damage that makes a more severely Autistic person seize, twitch, scream, be unable to handle normal stimuli, interaction, or difference in routine, etc. In all reality, most of them are perfectly intelligent in there, but trapped in damaged bodies that are betraying them. Can you even imagine that? People with milder forms of Autism have the same type of brain damage affecting the control, emotional, and social areas of their brain (a lot like an addiction does), but because it's not as severe, their brain learns to adapt and hide it better. They're still trapped in damaged bodies, but because the human brain is housing an eternal spirit and Child of God it will learn and start to work around its limitations over time and often with outside help.

So, basically, people with Autism do have social and emotional limitations that they need help to overcome if they're going to hold a stable job, stay out of massive debt, have healthy friendships, and family relationships and grow. They will never be "normal" unless they get very early intervention and even then not quite, and that's actually perfectly ok. They just need help to function within healthy parameters. Most of them sincerely want what's healthy because they're intelligent enough to know, but without some of those key, more right brain functions of social and emotional desires they are often left floundering. Often, in their teenage years, Autistic individuals will get very depressed or aggressive or addicted or all three because they're intelligent enough to know there's something wrong, but not able to understand what it is.

We've been told by a doctor that if you times an Autistic person's age by .66 you may get an approximation of their social and emotional age. Meaning, when my husband was arrested, he was approximately 15 and a half socially and emotionally. He's always tried to "make up" for the social and emotional gaps with an incredibly high IQ, and has often "seemed" successful, but raw intelligence does NOT a socially or emotionally well adjusted person make. Still, people have often made the mistake of assuming he knows exactly what he's doing when he does wrong or that he's a sociopath. 

He is NEITHER a sociopath OR a socially and emotionally mature individual without proper therapy. I have mountains of personal evidence for both of these assumptions, but it would take too long to describe them all. So, I will give just two clear examples:

1. I actually married Matt because I knew without a doubt that he would NEVER maliciously abuse or take advantage of me and our children. He always let me be in control, and was in his heart and the majority of his actions incredibly loyal. So, I felt safe and that was what mattered most to me in a relationship. Unfortunately, he did not know how to have difficult conversations, so he would end up lying to me to cover up an addiction, which he had needed to do in his strict family and the Church to have any friends or relationships whatsoever. He has never once tried to force, guilt, or manipulate me into something and I know he never will.

2. Why will he never do this? Because he knows exactly what it's like to be the victim. More often than not, Autistic people get taken advantage of in their relationships - business, personal, etc. They don't know how to effectively manipulate others so they are often the ones that get manipulated and hurt. Assault. Fraud. Divorce. Arrest. Bullying. Addictions. Abuse. You name it, it happens TO them more often than almost anyone else because they often can NOT read key emotional and social cues, no matter how genius they are. Unfortunately, some Autistic people do try to over compensate for this hurtful problem by getting aggressive, controlling, and paranoid but the key is they are largely ineffective at it and often just throw tantrums when they don't get their way or can't communicate it clearly. Instead of aggression, paranoia, and control, Matt fell into the severely depressed, abused, and addicted category. As a child who had known emotional and verbal abuse and manipulation by a potentially more Autistic than not, but well-meaning and committed parent, it felt both familiar and safe all at once. It was home. (Emotionally, I am very aware and empathetic, but socially I myself had always been stunted or introverted. So, I feel as if I have one small foot in the world of Autism and one out).

BUT, Autistic people really do learn and change, maybe better than anyone else I know. When they're committed to a path, they are utterly committed. Nothing can sway them. They'll work hard and they often respond beautifully to therapy. If the whole world could respond as beautifully to therapy and light as young Autistic people often do, this world would be a much happier place.

So, for those of you who have fallen into the first category: of fearing Autism and Autistic people. Sensing that there's something wrong and seeing them as an easy target or willful sociopaths, please read and educate yourselves by actually loving and knowing them. You are doing a great disservice to all of mankind by tossing these valuable people and their brilliance aside after you're finished with them. They have SO much to offer: fresh insights, new perspective, a loyal and forever love to those they trust, and talents that surpass the ordinary.

For those of you who fall into the second category of brushing Autism off and misusing the term "high functioning," please also read and educate yourselves. High functioning only means their brains have gotten better at hiding it for survival purposes - it does NOT mean they are actually living anywhere close to their potential and they do need real help. They're suffering in isolation, even if you can't see it because they're too afraid to show it. Maybe you know or love someone who you suspect is Autistic, but you're too afraid to think about what that might mean. Just think and read about it and it might actually shed a whole lot of light on your life.

This is my plea for a society with a LOT more Autistic people than we may have realized in need of love, understanding, and therapy and NOT abuse, addictions, arrest, divorce, isolation, and bullying. Autism is NOT an excuse for abusive or criminal behavior, but it IS a reason beyond the narrow view of "sociopath." Really, they're just very intelligent and innocent children trapped in adult bodies trying to make sense of this world. They are some of "the least of these" and before anyone takes offense to that, allow me to illustrate how Christ spoke of children:

"And if children, then heirs; heirs of God, and joint-heirs with Christ; if so be that we suffer with him, that we may be also glorified together." - Romans 8:17

"But Jesus called them unto him, and said, Suffer little children to come unto me, and forbid them not: for of such is the kingdom of God." - Luke 18:16

"Verily I say unto you, Whosoever shall not receive the kingdom of God as a little child shall in no wise enter therein." - Luke 18:17

"And whosoever shall offend one of these little ones that believe in me, it is better for him that a millstone were hanged about his neck, and he were cast into the sea." - Mark 9:42  


They need us and we need them. They are some of the elect.

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