Why is autism awareness important?

The intended purpose for this essay is to address what, in one mans opinion, autism awareness means and what the benefits are to spreading knowledge and understanding throughout the general public. Some of the benefits seem quite obvious, while others I will share might surprise you. The good news is that there has been a tremendous amount of progress made in areas that one might assume. There is an unprecedented amount of money being raised for autism research and support. Personally, I believe that the current generation of children is exhibiting far more tolerance than that of any other generation that precedes it. This is not limited to tolerance for children with special needs, it pertains to tolerance across the board (race, religion, etc). Yet, there are other things that people need to know about that are impacting peoples lives. Areas where public awareness can further be of benefit are derived from the fact that we live in a world where some people make hasty conclusions and judgments about others. Regardless of what opinion one might have as to how much weight an individual should place upon the perception of others, it is important to address, one, that some people handle social pressure better than others and, two, that a few people can influence the perceptions and actions of many in ways that can cause devastating and very tangible affects upon families and autistic children who are already faced with unique and trying challenges. Families of autism are perfect targets for those who pass judgment and can influence others. Autistic people can be disruptive, chaotic, loud, aggressive and strange. Parenting strategies are often unorthodox and unique to the needs of a particular child. Many of the things we do to address our children can leave a parents actions at the mercy of context. From the outside world, it may be difficult to understand and there are many people in our society that simply dont like what they do not understand. While these challenges affect EVERY family of autism, I would like to call special attention to the single moms and dads. Why? IT HAS BEEN SAID THAT 80% OF MARRIAGES OF PARENTS WITH AUTISTIC CHILDREN END IN DIVORCE Scary thought, isnt it? This means that 4 out of 5 autistic kids have single parents that need to meet the challenges without the support of a partner and confidante that is unique to a strong marital relationship. From a person who has been fortunate enough to have a relationship that has endured 20 years of marriage and nearly 14 years of autism (since diagnosis), I can share that running a family that has an autistic child is extremely difficult, even with two people. It is for this reason that there is a special place in my heart for these single parents and their children. I see the struggle single parents have all too often and can only imagine the mental stress that comes with having to do it alone, especially considering that many are usually simultaneously enduring the challenges and pressures associated with their separation. Regardless of any opinions one might have for what has caused the divorce trend, I personally cannot help but sympathize with them and offer a plea for the public to sympathize as well. Single parents often do not have a support to help make some of the truly difficult decisions that are unique to autism. There is less validation for their efforts toward what can seem like a thankless job. There is no logical one to offset their nurturing side, no nurturer to offset their analytical side when they make decisions. There is no one to give them a break when the NEED for a break arises unpredictably like a freight train. There is no one to haggle with the school district or defend them from the countless critics. There is no one to physically,

calmly and gently defend them from their own rampaging, unreasonable child that will more than likely outweigh their mother by 20 pounds by age 10. There is no one to interrupt them from doing something they regret. Yet, around them there are people who have not walked a foot in their shoes, much less a mile, who act as if they have all the answers. Dont misunderstand, there are good people all around that care, but as I addressed earlier, it only takes a few sour apples to spoil the pie. We love our children and have great moments, but with an autistic child the balance of good times and difficult times is quite different than that of a typical child. At times, normally simple tasks such as getting your child off to school, to hygiene, to feeding them can become excruciating and daunting. Effective discipline and behavioral intervention requires constant strategizing, an amazing amount of patience and is far from the norm of what many would consider conventional parenting. GLIMPSE FROM THE INSIDE OF AN AUTISTIC FAMILY To illustrate how challenging autism can be, take a moment to think about how many times in a week you feel tired, or sick, grumpy or have a headache. Then think of a moment yourself that you might be your worstflu? Stress? Migraine? Pain? In a room full of onlookers? .this is the moment where an autistic childs intuition comes into play. You, an important part of their life, their environment, their security, begins to behave in a way that is inconsistent with your normal self. This is the moment that your limits are tested. The child begins to ask questions (if they are lucky enough to be verbal) at high volumenot random questions, the same ones over and over, up close, in your face, loud, trying to generate reaction. At times, they exhibit extreme behaviors as the attempt to incite any type of response in order to create some level of predictability and environmental control. Autistic children crave predictability in their lives in order to bring some level of control over their chaotic thoughts that are constantly revolving in their minds and can look to the reaction of others to obtain it. They dont care what type of reaction, good or bad, just something they can recognize and identify with. They will do things that would make most parents absolutely dumbfounded; this can include (but certainly not limited to), grabbing someones genitals, smearing feces, stripping in public, cursing. The list of possibilities are only limited by our imagination... if it will mortify you, they will try it. In fact, because of the childs constant craving for predictability, our responses and the responses to people in public whether, positive or negative, become reinforcement for the behavior. Anger, surprise, yelling, spanking, flinching, even the act of ignoring can reinforce them. All this happens at a time when a parent is most vulnerable; when they are not feeling their best or not thinking as clearly as usual or when they are in the view of public eye. Do you ever get embarrassed or not in the mood to socialize when you are in public? Because many of the self-stimulatory behaviors associated with autism are loud, distracting, odd and make people uncomfortable, autistic children are often the center of attention (as are their caretaker that is in the public with them). One can say that people should brush off the public eye, but this can be more difficult for some than it is for others. It is never a good feeling (simply out of consideration for others) for a parent to know that their child is making people around them feel uncomfortable. In addition, people who scrutinize can influence other people to do things or make decisions that impact lives. I say this to give the rest of the world, the community, just a glimpse of what it can be like to be the parent of an autistic child. The difficult part. Personally, I am one of the lucky few. My wife and I have a relationship that has been built to endure 16 years of parenthood and 13 years of autism (since diagnosis) so far. We have had some great times, we love both our children and love being their parents. Yet, in retrospect, we look back and laugh at the fact that we have endured things that most parents couldnt even fathomyeah, we laugh until we cry. But at the same time, something in the back of my head always tells me that I can only imagine what it would be like doing this alone and thousands of people around us are doing just that. A person could assume that my writing this has something to do with getting families with autism credit, benefits, support or validation for their efforts. While that would be nice, and there are plenty of people that

need it, I would be satisfied if something I did or said would offer the public some inkling of understanding for what they might be witnessing. What can be lost sight of is that, once autism enters a persons life, the challenges and hardships extend far beyond just care for their autistic child. It affects their career, their relationships, the managing of their family, their lifestyle, the parenting of ALL of their children, their faith, their finances, their mental and physical health; virtually all aspects of their life. On the bright side, having an autistic child also can make a person wiser. It can open their eyes to the fact that they will never know ANY other persons entire story and therefore we should be hesitant to judge. Everybody has their own personal challenges and demons for which we only have an outside perspective. It can make someone more accepting and loving even though sometimes they dont feel accepted and loved. It can create the habit of recognizing peoples genius rather than revealing their shortcomings. That is where true tolerance is derived and where joy can be found from the experience of having an autistic child in your life. The following are just a few things I have listed as things I, as one humble man and father of an autistic daughter, thought the public should know. I have also included some inspirational notes for other families with autism. 1- I (the parent) did not choose this path, it chose me. I am just making the best of it that I can. If autism is affecting you for a moment, a minute, an hour, a day, maybe its autisms way of choosing you, too. I am sorry if this burdens you, but its a big part of my life FOR THE REST OF MY LIFE, I have accepted it as I have accepted my own child. 2- Bullies are not what they used to be. Now, it can take the form of an elderly person who does not like their afternoon nap interrupted. It can be school administrator or teacher of my other child that wants to make my OTHER CHILD an example for tardiness or homework issues (this is partly derived from the fact our efforts are divided between to two different schools because the local school isnt equipped for autism). It can be a friend or family member who doesnt think you are doing enough (or the right therapies) for your child. Bullies can take many forms and while they are not necessarily formidable physical opponents as would be with a common definition of a bully, they arm themselves (or try to) with home owners associations, school districts, CPS, police, neighbors, the list goes on. 3- My child is not a devil child (and, yes, I have been told this among other things), but I can see how it might appear that way if you dont understand. If you choose not to try to understand, I cant help you, I am sorry. a. Feel free to call the police if you dont like what you hear, err on the side of caution in the name of keeping kids safe. It will be good to see them. Its been days. They know us by now.and they like us. Most of them have seen autism and know a good, dedicated parent when they see one. b. Autism is more than a social disorder. The autistic mind is a tumultuous place because autistic people tend to have a difficult time finding consistency in their environment and with how they interpret sensory input. That means they have a difficult time figuring out how to respond to what their five senses are telling them, how to respond to them and how to predict what will happen next. The odd and repetitive behaviors and noises they exhibit are primarily caused by their brain making some sort of sense of it all. c. Tantrums happen and it can get ugly. Being in a constant state of uneasiness can cause an overwhelming feeling that would make any person have a short fuse. Sometimes, the slightest variances in an autistic childs environment or contradictions to their expectations can create a level of anxiety that is on par with what a typical person would have in a war zone. A fight or flight response can be a regular occurrence and difficult to predict. 4- I am probably not as bad a parent as you think I am. And to assume otherwise might be short-sighted.

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a. Autism is a spectrum disorder. Every individual autistic child is unique and there are an infinite number of factors in which someone might interpret an individual childs strengths, weaknesses and sensitivities. What might work for one autistic child might not work for another. b. The way you guide and/or correct behavior with an autistic child can be counter intuitive. What might be a deterrent for a typical child might be reinforcement for an autistic child. In fact, with autism, what can be a reinforcement of behavior one moment can be a deterrent the next and vise versa. Behaviorally speaking, autism can be a moving target. c. We are sensitive to how our childs noises and behaviors affect others. However, understand that we are constantly exposed to it. In order to not have to lock our child up in a padded cell (or have ourselves need to be locked into a padded cell), we have developed a level of tolerance to it that maybe you have not. What you see as a disruption, for us may be background noise. We have to rest, too, but sometimes we rest amongst what you would see as chaos. Afternoon naps and sleeping through the night and quiet when we are sick or have a headache are privileges that we are accustomed to being denied. We are also used to our being interrupted and realize that takes some getting used to. People must co-exist. a. If you absolutely cannot live with something that my child is doing or saying, please address the issue in a direct, forthright manner. Dont hide behind the homeowners association, the police department or the CPS unless there truly is a concern for yours or someone elses welfare. b. Dont stew about it. I dont need someone showing up to my door frothing with anger. If you fear confrontation or cant keep your emotions in check, find a friend that plays well with others to be a neutral third party. Regardless of how you decide to do it, be ready to compromise, thats how conflicts are resolved. c. Here is the freshest thought of all. Why dont you get to know me? preferably before there is a problem. If you already have a problem, might it be possible to step out of your comfort zone for a little while longer to allow us to develop a relationship? Arent conflicts more easily resolved amongst friends than amongst strangers? Autistic people have rights. When people cannot resolve conflict among one another and have reached the limits of compromise, they must defer to the law. Federal law is federal law. State and local laws can vary by location, but they all are fairly consistent. Autistic people are considered people with disabilities which require certain accommodations as they pertain. Chances are, the law will favor the people with disabilities and often accommodations for mental disorders. The moral of this story is that it would be in your best interest to resolve your conflicts person to person. Batten down the hatches. The number of children diagnosed with autism has continued to increase in frequency in the last 20 years to epidemic proportions. We are right around the corner of seeing an enormous wave of these children becoming adult (if the wave is not upon us already). If you are one of the few that believe that this the result in a simple change in diagnosis methodology, only time will tell. Who knows, you may just wake up one day and realize that typically minded people are actually the ones in the minority and that they are the ones with the disorder. Pay attention. If you are reading this and you are surprised by any of it, take note. If you see that someone is not being given fair consideration, have the courage to ask questionseven if you think you are the only one in the crowd that feels that way. You will probably be pleasantly surprised by what can happen when you speak up. I would not recommend finger-pointing, but at least take the time to inquire enough to answer the question in your own mind as to whether someone is getting a fair shake. If you see someone struggling, let them do their thing (no one knows how to manage their autistic childs behaviors like their primary care giver), but maybe there is something you can help with (carry a stroller onto a bus, offer to put groceries into a trunk or simply give a gawking onlooker some explanation for what they are witnessing). From someone who has done this exact thing on occasion, I promise you this, you will find that there is nothing more exhilarating than the sense of satisfaction you receive from helping someone in need. Sometimes your offer to help might be turned down, but the offer itself can be encouraging.

For the other parents of autistic kids, welcome to the club. For the ones with a new diagnosis, I would like to share some things that I wish we would have been told when our child was diagnosed. For those that have been doing this a while, I hope that this document offers some validation, familiarity and comfort. I also hope that I might have been able to put into words what you have already been thinking. If you feel I have spoken out of turn, I am sorry. My intention of this entire essay is simply to inspire thought, not make any declaration of right or wrong. In addition, I am not attempting to speak for any other parents, rather simply sharing my point of view. There is light at the end of the tunnel. This journey will probably make you a better parent and a better person than you ever thought you could be. You will find joy in parenting again. If you have not already, its OK. If you refuse to accept any part of autism, at least accept the fact that it is not easy and you are human. Dont let the psychological/medical community tear you apart with guilt about all the things you should be doing. With the number of diagnoses now, autism has become big business and there is a ton of noise out there. There are a million and one cures for this so-called incurable disorder. The buzz word they use is symptom-free and is a subjective term. What you envision as a cure for your child may be possible, dont give up. They are right in saying that early intervention is important, but the time immediately following diagnosis it is also triage time. Have an action plan, get your team of support together and your therapy plans in motion. Then it is time to buy some space to work on yourself and your family because it is a marathon, not a sprint. If you are the type of person that cannot take a hit without delivering one in return, get help. Immediately. I mean this literally and figuratively. Understand that you are probably grieving. That is a process (denial, anger, guilt, sorrow, acceptance). Specifically, you are likely grieving the perfect vision that you had for your child (school days, proms, best friends, weddings, etc.). I caution you not to fear acceptance because it is often misunderstood. Acceptance does not mean you are giving up or resigning to the idea that there is no hope or cure or whatever you want for your child. It simply means you have a clear-headed, realistic understanding of your circumstances and you are in a favorable emotional position to establish an action plan. When you are finished with the grieving process, or at least let it run its course (I am not sure if anyone ever really completes it), you will see more beauty in your child and be a wiser you. Everyone grieves differently. Some people go into a shell of depression while others fight the system (if they are not fighting something, they are not trying), others write books and others found charities. If you think some of these sound more admirable than others, give yourself some credit. I have watched the passive miss opportunities, the fighters make enemies and overachievers fail to stop and appreciate what they have. There is no right way to grieve. Allow yourself to do so in your own way. Understand that people around you are grieving, too. They all do it differently and at different schedules. This can include your spouse, your other children, the grandparents (your parents and inlaws), aunt/uncles, close friends. Nobody who loves you wants to see you struggle and their way of addressing it is different than your own and does not always seem kind. Dont forget to remind them and yourself of this. Build your house rethink your priorities. Think about all your core values and plans. You may want to revisit the importance of your faith, career, idea of retirement, finances, educational goals, daily routine, relationships, vices, everything. Your plans dont necessarily have to change, but it is never more urgent than now to make sure that your plans and actions line up with your core values. Why? You will have critics. They will throw Coke cans. The more they make you question your decisions, the more they can distract you. The best way to combat that is to be able to reassure yourself that your decisions are well thought out and derived with the best intentions. Empty Coke cans do not travel far and you can decided how much Coke is in them. Have a sounding board. o If you are still married, be proactive. Be sure to test the foundation of your relationship now. The storm is coming and it will probably rain a lot. Your children, all of them, need the security of a unified front more than most and more than ever.

If you are a single parent, you have an especially difficult task. If you find yourself to be an emotional thinker, balance that out by finding at least one confidante that thinks more rationally. Conversely, if you are more analytical, you may want to brainstorm regularly with a nurturer. Autistic kids in particular need consistency. Autistic kids love rules. Once they assimilate to them and make them routine, they are comforted by them. Too much compromise (even if you do it to be compassionate) can cause tons of problems later. Expect the unexpected. Visualize what you will do in in the in public if they begin to exhibit challenging behaviors (at the store, at church, at social gatherings, with other children). Front-loading is the phrase that professionals use, but dont forget to front-load yourself and maybe even others that could potentially be involved. Dont allow your child to hold you captive or put you into a bad position. Have an exit strategy. Decide in your mind how much responsibility you need to take for your childs behavior. How important is it to make other people feel comfortable with your childs presence? You might want to consider certain difficult situations as teachable moments for your child, for members of the community, for yourself. The behavior of an autistic child is not necessarily a reflection of the parent. Your child is going to have to learn how to be in public at some point. If the people around you are not sympathetic to that, you have to let as much of it go as you can. Understand that you dont know what you dont know. Not only cant you predict the future, but you dont know what obstacles and opportunities precede you. Looking to others can extend your vision and inspire you. However, proceed with caution. Some people can see a person as weak because they lack knowledge rather than see them as strong because they are always learning. Regretfully, there are people who actually prey upon that. Get to know the power of third-party credibility. Fighting your own battles is admirable, but having another person stand up on your behalf is powerful. Advocates are not just people you can hire, they can also be a close friend or family member that knows your character and witnesses your acts of dedication as a parent. They can also extend your field of vision. (As a side note: school districts and insurance companies are notorious for not volunteering information about services that are available and that your child has a right to). It is important that you gain knowledge and that agencies know you have access to that knowledge if you intend to make change. Dont bite the hand that feeds you. If you feel you have to fight for your childs services, great. Yet, you cant forget that you need to enroll a team that has your interests in mind. By drawing a line in the sand too often, you may find that your team is taking a minimalistic approach with a goal of pacifying you instead of doing whatever they can to help your child. o

SUMMARY As the parent of an autistic child, I have learned a lot. We have learned a lot, my wife and I. I am not solely talking about learning the definition or science of autism, I am talking about what it means as a part of our life. We have learned more about ourselves, about our limits (or what we thought were our limits), about our comfort zones, our intolerance and sensitivities. We have also learned about other peoples limits, comfort zones, intolerance, and sensitivities and how they can be different from our own. We have learned what it is like to love and try to act lovingly unconditionally even if our perception of love or acts of love are not reciprocated. We have learned what it means to turn the other cheek and have the scars to show for it, literally and figuratively. We have learned that we are never in total control even though some people think or pretend they are. We have learned to quickly assess what we can control, do what we can and let go of the rest. We have learned when to care and when not to care about what other people think. We have learned about how to identify our critics and whether they are saying anything worth listening to. We have learned that people

can be unkind, but that unkindness is usually derived from something to be pitied, not entertained. We have learned that our perceptions are never a perfect depiction of reality and that people believe what they want to believe and often only as it conforms to their own interests. We have learned that even in a room full of good, well-intended people, it only takes a few to stir things up and make your life difficult. We have learned that there are people whose esteem is derived from places outside of themselves, people who prey on the weak. We have learned that kindness can be misinterpreted as weakness. We have learned that sometimes, and unfortunately, you need to bare your teeth to let them know you are not as weak as they think you are. With all that said, we have learned that there is still joy to be had. There is still love to be given and received, both with our autistic child, her brother, family, friends, acquaintances and strangers. We have learned the value of surrounding ourselves with positive people helps you to focus upon what is important. We have learned the value of enrolling people, unifying objectives and building a team. We have learned that if you stand up to fight on someone elses behalf, it is more powerful than letting them fight on their own. We have learned that sometimes there are heroes in our midst and sometimes you wont know who they are until you need them. We have learned that it takes more courage to stand up for whats right even when you dont have to what they call third party-credibility, you see? This, among other things, is why autism awareness is important. We need more people in our community that understand and seek to understand than people who think they have all the answers. There are people out there that have just begun learning all of this: According to the most recent statistic, autism affects 1 in 146 children. They all have parents that are in for quite an experience. If you are one of the few that think the statistical increase is solely a result in a change in diagnosis methods, I would be happy to introduce you to some parents who might in-turn introduce you to their children. It will change your perspective, I guarantee it. The most important thing we have learned is that we are still learning and that our perceptions, beliefs and circumstances of today may be completely different tomorrow. If you have any questions, concerns or feedback regarding this essay, please visit my blog at http://randyortiz2.wordpress.com/ or respond via e-mail at randy.ortiz2@yahoo.com Randy Ortiz, Shaynes dad Three things in human life are important. The first is to be kind The second is to be kind The third is to be kind -Mother Teresa