Sunday, November 28, 2010

"I hate your autism."

First,note the quotation marks. I don't actually hate anyone's autism, but you've heard this quote before perhaps. I know I have. It's a quote that reeks of intolerance and lack of education. It can also come from frustration and lack of understanding.

Those of you at my facebook page may remember a question I posted some time back. I asked what readers want to know about autism. One parent posted that he wanted to know how to get rid of autism as soon as possible. He hates his child's autism. Now, I'm trying to address his quote and this reaction in other was rather than be negative and I hope the rest of you take it the same. I believe this man and many parents like him are frustrated and at wits end. They are having a hard time understanding their child and how autism takes affect.

From this point of view, I want to remind you all that there is no cure for autism. Let me repeat that; there is no cure for autism. One more time, there is no cure for autism. At least, not yet.

That being said, the first thing you must understand is that autism is a biological condition, not a psychological one. It has psychological co-effects, not it is not psychological at it's source. Autism is caused by various connections in the brain that are not communicating properly if at all. That's how everything in your body works, you know. Your brain tells your heart to beat, your lungs to take in oxygen and controls how your senses take in information. That's the key here. How your senses take in information shapes how you interact with the world around you.

Some of this can be overcome with years of practice and support. However, autism will be with a person for the rest of their life. There will always be difficulties. The sooner you accept that as a parent, the sooner you can be your child's best coach in how to survive and live with autism. Without that support, especially without your support, your child's future is bound to be uncertain and random.

Another aspect to consider. When someone says to me, "I hate your autism" (and it's happened), it hurts. It hurts especially if this is someone I trusted and let close to me. What a terrible and unfair thing to say. It's even worse if you are a child and a parent says that to you. It's confusing enough to grow up with autism, trying to figure out how to work with the world when your brain won't process things normally. Add emotional turmoil with a parents disapproval and it's much worse. It's not the child's fault they have autism. They can't wad it up and toss it in the trash for you. As it is, children with autism have a tendency to take things very personally and literally. You may as well come right out and say you hate them personally. They are likely to take it that way.

It's important to learn all you can about autism and how to teach your child how to live with it. You have to know that this process will last their entire childhood to the rest of their natural life. Be part of their lives. Autism is not the end.

Wednesday, November 24, 2010

Passing Thanks (dedicated to Donna Carmen)

She was one never afraid to speak her mind. That was my Grandma Carmen. If she had any opinion at all, whether you asked for it or not, she would give it to you. It may not be what you wanted to hear either, but she was very honest. Thing is, I don’t ever remember her being wrong. She passed away in the hospital just yesterday and tomorrow is Thanksgiving. Yes, that creates an interesting array of thoughts. As I sit here and remember her, I realize that I’m thankful for having her in my life. She was very influential to me and one of the most supportive people in my family.

She took me in when I was stranded in the streets of Los Angeles at 17 years old. I was a troubled and random kid who still didn’t know that he was autistic or what that meant. Her strong honesty and direct communication guided me towards finding a job and doing for myself. I didn’t always like it, but it worked.

When I learned about having autism, she was one of the first family members to take immediate interest. She often had articles and people to tell me about when spoke after that. Like everyone, she knew there was something going on with me, but no one knew what it was.

I remember Fourth of July get togethers, family reunions, home shopping network and football being a big deal around her house. I remember the giant satellite dish and Grandpa’s giant ham radio tower antenna. I remember more Avon “shaped” cologne bottles than I ever saw in my life.

I remember anytime I was hungry while staying in her home she would say, “the food’s there to be eaten” and “If you leave hungry it’s your own fault”.

So I have a lot of experiences to be thankful for and I learned a lot that helped me in life. I’m very thankful and that is what I am carrying into my Thanksgiving this year.

Monday, November 22, 2010

Autism and holiday gatherings

I know of many families who don't go to holiday gatherings anymore because of their child's reactions or unsupportive family reactions that are involved. For some of these situations it's understandable. But if you have a high functioning child you may be depriving them of important social practice. That being said, it's that time of the year to consider all the things we need to do for our kids to survive the social dramas of the holidays.

Holiday gatherings fill a place with extra sounds and smells that can trigger the more sensitive of our kids. There have been times when my son just wanted everyone to go home because he couldn't take all the mixed voices anymore. The extra mix of smells from varieties of food cooking can be a trigger too. While the typical person finds all the odors a delight, too many can overload an autistic.

Can your child handled a holiday gathering? How well does he or she handle crowds? How big of a crowd? How loud? Compare your child's sensitivities that you already know about to what you know of your family's gatherings (if you haven't tried already) and you can gauge their reactions.

How do you handle the hard spots? How do you handled the possibility of meltdowns from sensory overload? As a matter of practice, remember to plan an escape route to a designated "quiet spot" where your child can feel comfortable and relax for a bit. A place to hide from the sensory input. If you are going to another persons home, you should discuss this option with them and see if they can work with you. If you have unsupportive family, this may be difficult. Understanding that, your child's welfare is more important than any holiday gathering. You should take no shame in having to leave early or just not going.

If you don't go, be sure to share some holiday experience with your child at home. Cook things that have some of those smells and get them involved in your own home festivities.

Another way to help with possible problems is to have things there that are positive distractions. Things that your child loves in the sensory realm. For example, maybe they just love the crinkling of wrapping paper in their hands? Let them play with it. It's better than a meltdown any day and comforts them. For that matter, some are best left with their special diet and what they prefer for the day rather than forcing them to what you know they may not eat. This will keep the peace for your get together and everyone will be happier for it. Try not to forsake any routines so you can help them say as balanced as possible.

What's most important is that you know your child and know what affects them and how. You are the one who can help them the best. Be their holiday advocate and you can find ways to get through the holidays easier.

With that, I wish all of you a very happy holiday with many happy tidings involved.

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Wednesday, November 17, 2010

Radio Therapy Online

Today, if you haven't seen it on my facebook page already, I want to introduce you to Radio Therapy Online. You can check out their website HERE.

Quote from their site: Radio Therapy Online's mission is to present fun, interactive, positive podcasts in a humorous way; to provide "therapy" for broadcasters and listeners; to spread the passion for life. The hosts are Todd Michaels and Lisa K.

It's true, they do exactly that and I want to suggest that you listen in and check them out. Along with in depth interviews of interesting and influential people, they touch base on all manner of helpful topics for life in general. Food, organization, holiday issues, health issues, and even a touch of politics (without the hate) are things you will hear about on the podcast.

The atmosphere is light and uplifting and the hosts have a definite chemistry that carries the show forward. You never know what they are going to toss at each other next in good fun. They've even started doing a youtube bit called the Radio Therapy Insider.

Yes, I've been on the show myself, some time ago. Still, I listen to the show and find it be a positive and refreshing change from the standard and often negative media that's out there today. So I do hope that you will listen in and give it a try.

Monday, November 15, 2010

Looking ahead and concerns for our youth

Sometimes I find myself thinking about all the monsters out there in our society. I find myself realizing that I must teach my son to defend himself against them. It's a very complex mode of thoughts.

If I were only talking about physical altercations with school/work bullies or some mugger somewhere, it would be simpler. If I were only talking about stranger danger, it would be fairly concrete. But no, it goes much deeper than that. It can also get far more convoluted.

There are many kinds of human monsters out there and the ways they will seek to do damage are as diverse anything we know. Some of them victimize for possibilities of money, others for some perverted pleasure. It reminds me of one of the types of bullying I had to live with. There was no defense against it and it worked very very well.

It was done by some very good acting and sounded very convincing. Once I was sitting by the projector in class as the teacher was talking. One student piped up and said, "David, leave the projector alone". He sounded convincing and the teacher bought it. They already thought of me as a "problem child" so it was easy to get me into trouble. I was thrown out of class without touching the projector or anything near it. The boy thought it was outright hilarious.

False accusations and other ways of being used are things I fear for my kids. Our kids on the spectrum are reported to having trouble with areas of trust and even being too trusting, or gullible. Unfortunately, this is one fire that has to teach it's heat in it's own way on many levels. You can't teach them to watch out for everyone and everything. You can only do your best to teach good decision making. Teach that if something seems wrong, don't do it. Even that won't protect them from someone who will prey on their good intentions.

It's also sad, that onlookers will take this little act at face value and leave the victim hanging for it. That we haven't learned in our society by now, too look deeper than the surface of what's happening. That is how innocent people get smeared and marked because others don't stop to look at the details that matter. That's why we are all supposed to be innocent until proven guilty. But that doesn't seem to apply to general society. Something that needs to change.

Until it does, I will have to do what I can to help my son prepare for the predators out there. They never stop coming. I'm still a target and I'm forty. It's a very sobering fact. So, as you walk around out there today, try to take notice of the underlying details. Ask yourself what all the possibilities could be. Just to see what you can come up with. And try not to take that person you saw, or how someone else marked them, at face value. If it really matters, seek out the truth for yourself.

Picture of Nelson Muntz property of FOX.

Monday, November 8, 2010

Falling back and internal clocks

Here's a funny for you; daylight savings and a supposed extra hour of sleep. Yeah right. My son's internal clock is set for almost no later than 7 am. He doesn't like being woke up before that, though it's necessary for school days. Weekends? 7 am. Do you know what that meant for this weekend with the falling back of an hour? That's right, 6 am.

As far as his very sensitive internal clock was, it was 7 am and time to get up. This is not such an uncommon phenomenon and not exclusive to autism. Still, you have to try and see the humor in the situation, while you'd much rather get that extra hour to sleep in. The idea of getting up at 6 am on a weekend, when you don't have to, is never a pleasant one. If you're a naturally early riser, more power to you, but I'm not (ha ha).

So when Mr. Bouncy came bounding in and I looked at my cell phone, I groaned. I couldn't believe he was up at six and I had completely forgotten about the time of year. It wasn't until I went out and saw my kitchen wall clock and looked at the calendar that I realized what happened. Then all I could do was shake my head and chuckle. I could try and tell him it was too early to get up, but no dice there. When he's up and ready to go, he's up and ready to go. For that matter, he has more energy than anyone in the building when he's awake and has trouble controlling it.

So, that's that, we're up and there's nothing to do about it but get the day going. How did your weekend go? Did you get an extra hour?

Thursday, November 4, 2010

Facial expressions and autism

I can't tell you how many times I've been asked "why are you angry?". The point here is that I had no idea I was angry in the first place. That would be because I wasn't angry at all. It's just something my face does without my notice.

In autism, it's not unusual to have facial expressions go awry. The way I see it, there are three reasons for this.

1: Lack of control over facial expression in the first place. It's like having a connection that just doesn't work from our emotions to the way we show them on our faces. This doesn't always work the same every day. Like anything else, there are good days and bad. This also doesn't work with every emotion the same. Sometimes we can show various emotions just fine while others don't come out quite right. It can be hit and miss.

2: We aren't reacting to what you think. Think of a car accident. Everyone reacts with typical shock at the sudden disaster. Everyone except the autistic person who is laughing. Everyone assumes they are laughing at the car accident, but they aren't. They've noticed something that took their attention away from the scene of the car accident. That's because of how hard it is to filter information. Every tiny thing around us demands our attention and our brains are trying to process it in one giant bite all at once. To that autistic person, the thing that made them laugh is just as loud and demanding of attention as that car accident is to everyone else.

3: Sensory experience. I knew of a child who would scrunch up his face over and over again. When asked why, he honestly replied it just felt weird. Sometimes, what you are seeing has nothing to do with emotion at all. It may be as simply defined as a tic or form of stimming. I believe stimming is highly attached to sensory experience. It's calming and soothing, maybe even fun. On of my son's stims is literally running in circles. He sometimes does it with a great deal of giggling and laughing. He must be having a good time right? So if someone stims by face scrunching or eyebrow movements, it's safe to say it's about the same (I think).

With those examples in hand, I think it's safe to advise not to take an autistic's facial expressions too seriously or to heart. What can you do? The best plan of action is to simply get to know that person. After all, they are a person at the bottom line and that's the best way to understand how they personally feel about anything. I've been told by neurotypical people that it's "normal" to have your quirks. Well, if that's true, why so much confusion? If you want to know what any persons quirks are, get to know them. This is true in the light of any condition or disorder. The main idea is understanding and not blaming someone for what their condition or disorder causes.

Facial expression is a major factor in non-verbal communication. That could make getting to know that person a little tricky or awkward. But if you subscribe to the idea that it's okay for everyone to have their quirks, I'm sure you can manage.

Photo credit: My son showing me his loose tooth last year.