In our household, the divide between PC and Mac is strong. Also at least half the family prefers to dual boot both a Linux and Windows operating system. Sometimes the technology we prefer makes for some lack of communication because maybe my android won’t talk to my son’s iPhone. Heck, my husband and I have the same phone, but the way we manage it, means he doesn’t like to use my phone and vice versa. “Yours is like a foreign system!” he said the other day.
My husband’s statement made me start thinking about my special-needs son, who lives with Autism Spectrum Disorder (ASD). Bean, as many of you via the internet know him, is now 19. The struggles to get him educated, live independently, and employed have been a constant struggle. I regularly tell people when trying to understand Autism that my son was born with a different operating system. His co-morbidity diagnoses also strap him with some faulty software. Sometimes, as he grows, or endures conditioned experience, that faulty software goes through ‘patches’ or ‘upgrades’. (The co-morbidity is most likely extreme symptoms of Autism, but it helps to have people understand to explain he has a mood disorder or generalized anxiety order – but its foundation is ASD. Also, since Autism is neurological/biological disorder, not a psychological or emotional condition, other diagnoses can/may exist.)
Art work by Leslie Nan Moon (used with permission)
I don’t like to blog about our struggle or his struggle much. I try hard to keep his personal life private. But what happens to him, as my child, impacts me and my whole family. Everyone in our household’s lives has been colored by Autism. There’s a blue cloud, if you will, over all of us. Also, I’ve learned in the last couple of years, that sharing helps others not have to suffer some of the same things my son, my family, or me have endured. If someone can learn from my experience, all the better the world my son will get to live in – especially after his mother – me – his chief care giver has headed to the summer lands. For now, the blue cloud, that eternal puzzle piece, is a focal point of our lives – like it or not.
Thursday, April 5, was World Autism Day and the world made an effort to “light it up blue” to help raise awareness about Autism, in essence giving everyone that blue cloud for the day – sort of. Raising awareness is definitely needed. I often have to “educate” people on Autism. They think every person with ASD is like Dustin Hoffman’s character in Rain Man. That they have some super power – whether its mathematical genius, photographic memory, or apparently, they can fly. (Yes, dear readers I actually had a person ask me what my son’s Autistic superpower is. In that particular case it was keeping me responsible from not throat punching the person. I just simply said that he doesn’t wear a cape and walked away.) Other beliefs about Autism are that you only have Autism if you cannot speak. Or that a person with Autism will never live a satisfying life. All of these are falsehoods; therefore, you can see raising awareness is needed. Thankfully the entire month of April is Autism Awareness month. So, I’m going to “light it up blue” just a bit longer and hopefully keep that conversation going.
I’m going to list some reasons why Autism Awareness needs to be raised and how it’s affected me personally, and I know, most importantly, I’m not alone.
* 1 in 68 adults lives on the Autism Spectrum Disorder. Amazing as this statistic is, I am constantly explaining to people what Autism is. Of course, I didn’t know what it was fully until medical providers starting saying that my son had Asperger Syndrome [a type of Autism, which isn’t in the DSM (Diagnostic and Statistical Manual of Mental Disorders – aka the book that doctors use to make diagnosis) any longer]. So, perhaps it’s understandable that people wouldn’t care until it touches them directly. But with a statistic like that, millions of people are living every day with this disorder, this condition. You’re going to eventually run into someone who has it, or life is deeply affected by it. The other amazing thing about this statistic is the absolute lack of services for the children, young adults, and aging adults dealing with this disorder. Yet, 1 in 68 people has this diagnosis. “You do the math,” as Bean likes to say (but he means it literally).
*If you’ve met one person with Autism, you’ve met one person with Autism. It is a spectrum disorder – no two people with Autism are alike. Autism can be used as an umbrella term for many presenting disorders. This likely is why there seems to be great services for my fellow parents’ kids on the Autism Spectrum, but not mine – and vice versa. Some ASD people are verbal. Some are not. Some arm or hand flap. Some pace. Some chew their clothes. Some chew their hands. Some will look you in the eye. Some won’t. Some have a wicked sense of humor. Some don’t. Some are great writers. Others prefer photos to express themselves. In short, ASD people are all different, just like their neurotypical counterparts. Like any human being, being a human being with Autism is complicated. It’s not a cookie-cutter diagnosis – it’s a Spectrum. Look up the word spectrum if you’re not getting it. Please. The key part of this is that they are people. People first. Treat them with respect, not because of their disorder, but because they are a human being.
*It’s Not the Parent’s Fault (or the child’s fault). If I hear one more time about how my son just needs discipline, or that I’m too permissive, or too cold, or didn’t bond with him, or that I have Munchhausen by Proxy (yes, I had a pediatrician when Bean was five years old suggest that may be the issue), or – fill in the freaking blank, I just might scream. Also, if you think that raising a neurotypical child – or worse, teenager – is tough. Try adding ASD to the mix. I want to give every parent of a child with Autism a medal. Although, all of us parents dealing with a child with Autism know we’ll never get one – we don’t expect one. But, we’re not superheroes, either. We are human, just like our children. There are some days when we will scream, “F@#* Autism!” It’s like a monster with its teeth and claws in our child’s brain stem. It’s not easy to live in this neurotypical world, when the entire of society is set up to deal with only Windows, Mac, or Linux and you’re running Blanco y Negro OS. I give it that name because many folks (not all!) with ASD think very black and white. There’s no gray. You should laugh at this point because Grey is my son’s middle name. Thanks for the joke on me, universe. Also, I want to let you know that parents with children with Autism have some of the best self-deprecating senses of humor. It’s a coping skill, but also makes us some of the most fun people I know.
*Won’t and Can’t mean different things when you’re dealing with Autism. This probably is the hardest thing to deal with as a parent of a child with Autism. One day he’ll eat off of the regular dishes, the next he absolutely has to have his favorite plastic ones, because it feels different, painfully different. When he’s in sensory overload there is nothing malicious in his meltdown, truly. Until you have experienced a sensory overload meltdown and your child has gone into complete fight or flight mode, you will not understand. So, until then, can you take it from me? It’s not that he’s willfully creating chaos. He can’t not at that moment. Trust me, many individuals with ASD who have such chaotic meltdowns, go through a period of remorse afterwards, when that illusive switch in their brain switches back to calm. It’s terrible for their self-confidence, which doesn’t help any social interaction issues they may have. It’s not that she won’t do her homework, dear teacher, but at this particular moment, she can’t. Won’t means that someone is choosing not to; Can’t means that they are unable to. A person with Autism many times just can’t. They aren’t capable. It doesn’t mean they will forever be incapable. Just at that particular time, perhaps. They may very well WANT to, but they cannot. Autism is a beast that we try every day to tame – whether we’re part of the person with Autism’s support network, or the individual themselves. Whomever you’re dealing with that endures ASD, you will likely have to understand that Can’t is more central to their everyday living as opposed to Won’t.
That means every day you may run into some difficult situation. Some days, things seem so calm and pleasant you think Autism took a hike. Trust me, it’s there still. There’s no cure or changing the person with Autism. You can provide partial participation or conditioned experience to help them, but their different operating system is still in charge. Some days they can’t shower because the water just overwhelms their senses. Going along with this, focusing on what the person can do at any particular moment, versus what they can’t do, is so much more pleasant and prevents the aforementioned meltdowns. So, if your friend of a daughter with Autism is smiling because her child is happily wearing clothes today, as opposed to streaking down the family home’s hallway, celebrate that victory with her. If your co worker is solving a problem for your department and working almost obsessively on it, but not able to attend the employee luncheon because the social interaction is over stimulating, celebrate that victory that while you’re eating burgers and fries, they are putting out the flames of business troubles. Celebrate the cans, please.
*Having an Autistic Meltdown (sensory overload) is not a Crime. Dear Law Enforcement, and First Responders, please get with the program and get Crisis Intervention Teams implemented for all your units. Although, I truly believe every police officer, emergency medical tech, and fire fighter should have such mental-health crisis response training, at least having a CIT in place would be a great start. Dear General Public, please agree that tax dollars should be used for this. Dear Court Officers: If a defendant tells you they have Autism, listen. When a young adult with Autism is yelling at himself at the bus stop, he is not committing a crime. When a young child with Autism is throwing pencils in a classroom, they should not be arrested. The incidents of people with Autism unjustly disciplined or detained because of their disorder needs to stop now.
It’s time to get serious. It’s time to help. Please help. Autism is not being taken seriously. Approximately 4 million people in the United States are on the Spectrum. In 2008, the CDC estimated that 1 in 88 people were considered on the Spectrum. Today, that number has increased a near 25 percent. Like I wrote above, 1 in 68 people (children, teens, adults) are living on the Spectrum. We know it’s genetic. We don’t know what causes it. There is no cure. What we do know is that the people and their families suffering with this disorder are getting little to no help. If you think there are programs out there, I’m here to tell you: THERE IS NOT. Research dollars are nearly non-existent, education dollars are non-existent, and programs for activities for daily life, independent living, and employment are nearly non-existent. Those programs that do exist have been spearheaded by parents and have a very positive, yet limited reach. If anything, be an educated person about this disorder. Don’t add fuel to the fire of bittersweetness Autism families live every day. Don’t call my child retarded, when he clearly is not (in fact, many on the spectrum are gifted). Better yet, don’t call anyone retarded. The respect with which someone is treated should not be determined by their intelligence.
Don’t be the law enforcement officer that handcuffs and abuses a person with Autism, because you think they WON’T comply with your commands (remember, they likely can’t). Don’t be that teacher that tells the parent that they need to be more disciplined with their child (or sometimes worse). Don’t be the neighbor – or worse passerby – that calls the police, without first asking if the parents need help (we all have family crisis plans, trust me). If you’re an extended family member of a person with Autism, maybe offer to provide respite for the caregivers. Even a dinner out for mom and dad can mean the difference between a good weekend and a bad. If you don’t know anyone with Autism, call your legislators and make sure they’re doing all they can for the education, employment, and future independent living of the soon-to-be four million adults with Autism in our country. Be the helper, not the hurter, as my son used to say when he was six. For a young kid with Autism, that’s pretty freaking wise. How wise are you about Autism? Hopefully this post helped you a bit. If you have questions, feel free to ask me in the comments below. Or check out Autism Speaks, or other really great blogs of people living every day in the Autism trenches: Autism Hippie, Autism with a Side of Fries, Effin Autism, or ASD Dad. Even better, read from the person with Autism’s perspective, like Drive Mom Crazy (love that blog title!), Reports from a Resident Alien (and on Livejournal <3) , or The Autistic Me. As well, #LifewithAutism will now become a regular feature here at Casz’s Fiction Farm – but trust me, it’s not fiction. I move to do this now, because I can no longer keep this in the background of my public persona – as it is so central to my everyday life. If my experiences can help educate, or help someone – both with Autism or without, then I am happy to share.
Come share in our cloud of blue, even if it’s just for a day, or the month of April. Then you can go back to your Windows, Mac, or Linux world.