Mindset For Coping With Autism
Having the right mindset when parenting a child with autism spectrum disorder is key to a happy life. I know that in my situation, the attitude I have directly affects the attitude of my son. Just like any other person, really.
Secondly, my happiness is greatly affected by how I choose to view my “stressful” days with my son.
Keeping a happy and stable mindset is the most valuable tool in a caregiver’s arsenal. Especially when you’re caring for someone with special needs.
If the day appears to be nothing but stress, then it is likely you will be correct. Your day will be stress, and it will compound as the day goes on.
The day will always get worse, because the tone will continue to decline. I am in no way claiming that there aren’t bad days, or that you should beat yourself up for having a bad day. My intention is to point out that your goal should be to use empathy, patience, and positivity as much as possible.
Furthermore, the need to check yourself, and really question whether the days of negativity are becoming a trend is essential. This step is vital to a successful long game of raising someone with autism.
Empathy is helpful in pretty much any situation involving people. However, someone with autism is in a different world than we are.
This fact makes relating to someone with ASD very difficult. This becomes especially true in dealing with day after day of aggressive behavior, that you essentially have to take with a smile.
In my experience with my son, there are two types of tantrums for an autistic child’s behavior. My son has tantrums that are in pursuit of a direct goal, such as wanting a piece of candy. Then there is the tantrum that loses any sight of a goal. These sort of become tantrums fueled by the inability to calm down. We commonly refer to these as “meltdowns.”
Goal Oriented Tantrums
First off, the caregiver needs to fully internalize the fact that a person with autism does not understand how their actions affect others. Typically, the most influential factor of autism spectrum disorder is the social disorder.
The lack of social skills create a lack of empathy for the people in their life. Which means that in the end, you are the problem solver if you care for them.
No matter what your day has been like, a child with autism will likely only understand that they have a need or want that isn’t being fulfilled. By nature, you’re too blame.
These problems are usually what start my son’s tantrums. Sometimes tantrums are out of the blue, and without rhyme or reason.
Typically it starts with my son being told “no”. In these situations I use empathy to understand that he sees his discrepancy as life altering.
This is true no matter what it is that I am saying “no” about. That means I can’t downplay his want or need, but I also can’t just give in every time he wants a snack.
I need to be empathetic to how he feels this problem is changing his life, and then try to redirect his focus.
For the purposes of this section we will focus on the fact I need to be aware of how he feels, and why he has little option to feel any differently; unlike me.
The Point of No Return
A point of no return tantrum is pretty difficult to calm down. I separate the types of tantrums because it helps me to slow down, and recognize when my son’s tantrum changes.
It changes from being about getting told “no”, to simply not knowing how to calm down any longer. The original reason for the tantrum is long forgotten, and now it is just navigating his way back down to zero.
Again, there is a need for empathetic thought on how it must feel to be so enraged without understanding why. Doing this helps me to realize that I’m the only hope for direction and safety in the room. That my son is truly beyond himself, and truly needs me to keep him safe and help him calm down.
Without empathy there is no hope to understand how to deal with someone suffering from ASD. Caring for someone that can’t appreciate your effort is a thankless job at it’s very root. This doesn’t have to be true if you take joy in the positive impact you have on the life of someone that truly needs it. For me this selfishly comes from knowing I am there for my son who can’t help himself.
It is important to note, that someone caring for a person with autism will eventually run out of patience. I would dare say it is impossible to find someone that wouldn’t. The first and most effective tool I use when the day gets overwhelmingly rough, is to breath and remember; this has to be worse for him.
Empathy at its Core
Empathy is crucial!
This leads me to how I shape my perspective when dealing with my outraged son; this has to be worse for him, than it is for me. I rely heavily on empathy to remain sane and happy, because after years of living with autism, I’ve learned he is essentially scared, to an extent.
This can’t be said for sure, however, I do know that I can walk away from his tantrum and share my frustrations with others. My son simply can’t do that. He has to go it alone, all the time, with no vent for frustration. That’s a pretty big burden to carry for a person who already understands so little of the world around them.
Realizing the level of aloneness he must feel keeps my stress from his tantrums in perspective. I get a break when it is over, compared to the break he literally never gets.
I was fortunate to already be a fairly patient person. That being true didn’t mean that I haven’t had to learn how to be more patient over the years. I have, and will continue to push myself to be a little more patient each day. When my son is losing his marbles in the middle of the mall, because he can’t eat 11 pretzels, I use patience.
For many, patience is not a natural trait, I understand that fact. All things being fair and equal, if you are caring for someone with special needs, you’re lack of natural skills is irrelevant. You need to learn to be patient. If you don’t know how to do this, there are tons of books you can read.
My favorite, though totally unrelated to special needs, is “The Servant” by James C. Hunter. The book talks about how true leaders remember to give their people what they need, based on what’s best for them.
In my opinion if you want to be a patient person while living with autism, then you need to understand how to be a selfless leader. This book does a fine job of illustrating why that is.
I led in with the need for empathy on purpose. This is because the consideration for patience is much easier when you understand how the person feels. There is no realistic way to tell you how to remain patient. People are too different for some blanket statement on tips for more patience. Instead I urge you to find what works for you, and to read as much as you can on leadership, instead of patience. I say this because books on patience tend to be like books on dieting.
Literature on patience tends to provide a shock value that causes action, but it never lasts. The topic is too inspirational by nature, and the books don’t seem to lend enough thought to the base of what makes a person patient. Understanding leadership, and people, provides a foundation of skills that you can use everywhere in your life. The more in control you feel, in my opinion, the more patient you will be by nature.
Become a great leader and you will find a great parent to a child with special needs.
Being positive sounds easy, right? Just smile and remember to be empathetic and patient, because some guy on the internet said it worked for him.
Well- Hopefully. In reality, however, I don’t see an easy road for anyone that is caring after someone like my son. It is very stressful, thankless (in the generic sense), and persistently demanding to raise someone that doesn’t speak, isn’t potty trained, and has an innate drive for routine. Being positive is much more than a word in this situation. It is an outlook.
My outlook is that life is meant to be enjoyed. It is hard to understand sometimes, with the struggles I see me son go through, but I also know that he is always trying to laugh. That is always his goal. He doesn’t want to be upset, or find ways to be irritated. My son, who has virtually no outside influence to shape his views has proven 2 things to me:
- Bigger tablets/screens must really be better.
- The purpose of life is to be happy
I say this lightly, but I really learned from my son that there must be something innate to being a person that calls for the pursuit of happiness. I use this to keep myself positive from day to day. He has tantrums, and they fluctuate in frequency over the years, but he always wants to be happy. Happiness is always the root of what he wants, and what he is from day to day.
My ability to feel positive, and my need to act positive, are two separate things. That is the intended take away from this section.
Positivity as a Goal
When I feel myself lacking in positive thoughts I have to do one important thing. I have to acknowledge it. By doing this, I do not mean that I beat myself up about it. Picking on myself would make no sense, and totally ignore the real reasons I may have for not feeling positive.
I simply acknowledge my negative outlook as a way to address that I know why I may be irritable. It helps to keep my frustrations in perspective, and realize that it isn’t all coming from what’s in front of me (my child throwing a fit for instance).
These are the factors that I wrestle with when dealing with my personal positivity. Not how I appear, but how I feel from day to day. I will fully admit that I have had many spans of time that I didn’t feel very positive about my life or situation. So basically, I am like everyone else, and I have bad days/weeks/months.
When I realize that I haven’t been very positive, I make it a point to figure out why, and deal with it. Easier said than done, but I attempt to be aware of my attitude, like I would hope most people would. However, this is not the most impacting aspect of positivity that affects the way you care for someone with autism. It makes a difference, and you should seek help if you struggle to find the light at the end of the tunnel, but it’s not the focus.
Being able to embrace the positive side of life internally is important to a happy life. Sorting this out is essential. However, the side of positivity I would suggest a person focus on (if they can’t share in feeling positive) is the external appearance of positivity.
Positivity as a Tool
Using positivity as a tool is much easier than figuring out how your personal feelings work. When I think of being positive for my son, I think of the face value version of positive behavior. The same version of positive that is used by your cable company’s customer service. They may hate their life, but you would be none the wiser by their tone on the phone, or their body language behind the counter.
With raising a special needs son I have learned the value of salesmanship. I put on the show that reflects what I want from him. So, if I want to calm my son down, then I will be calm. If I want him to be excited, I will act excited. I will do these things regardless of how I feel about what’s going on.
Positivity in Action
Staying positive means that even while he is grabbing at my neck and yelling in my ear, I am keeping my voice upbeat and pleasant. I have no way to describe how differently my son reacts to a demanding and negative “no” versus a pleasant and positive “hey lets go do this instead”. The goal always being to change his focus to something else, or to doing what he needs to do instead.
It’s not a complex thing to do, so much as difficult when the tantrum becomes aggressive or violent. You have to remember when things are hectic and unpredictable, that there needs to be a voice of reason in the room.
The sole goal is to mirror the behavior I want from my son. I want him to stop being upset, which means I can’t just repeat commands about what he isn’t allowed to do. Usually I will repeat lines to his favorite book, or sing songs he likes from school to try and distract him to something else. There is a need to stick to my guns on what he isn’t allowed to do, while presenting it like it is OK. I need to let him know that the world isn’t ending, and walk him back to something he enjoys.
Patience and empathy will walk you through this process. There is a method to the madness, it is just a matter of treating your outward positivity the same as training for customer service. You need to beat it into your head that positivity is best for everyone, and it is the only thing that works. Meeting aggression with aggression wouldn’t help in a customer service situation, so there is no reason to think it would work with a special needs child having a tantrum. Be positive on the outside regardless of how you feel. Just like at work.