Autism and stress

Question posed: What makes it so easy for people with autism to freak out?

On the surface, some may be offended at such a question. It's really a good opportunity to educate on what it can be like to live with autism or several other disorders that aren't plain to the naked eye. So, rather than get offended, I suggest sharing what stress levels are like for disorders of this kind.

First let's define stress in the psychological sense. First you may be interested to know that stress is a very subjective word and everyone has their own personal view of its definition. For the most part just about everyone understands that something irritating you is stressful and causes you "stress". There are positive and negative forms of stress as well. Everyone handles stress at least a little bit differently.

Another thing most people can agree on is that stress has its limits. You can only take so much of a "stressor" before you need to take a break. A good example of this is to think of exercise. Imagine picking up a five pound weight and bending your arm while lifting it. When you lift the weight you put stress on the muscles in your arm. The first time you lift it, may provide little stress. If you lift it a few more times, your arm may begin to get tired. The more you repeat the process of lifting and lowering the weight, the more difficult it becomes. This shows the limit of stress on those muscles. Eventually you will reach what is called "muscle failure" and you will have to put the weight down and let your arm rest.

In mental stress you deal with a similar style of limits, but different kinds of stressors. For example, think of your monthly bills. If you are having financial trouble or just on limited income, your monthly bills (electricity, phone, rent) may be a source of negative stress for you. Fear is another stressor, whether fear of losing your home, having your phone turned off. Fear may be of something real or imaginary.

One more thing that we can usually agree on is that, with enough stress applied, most things will break down in some fashion. That breakdown point is called a "stress limit". How many ways can you see stress limits in your day to day life?

Here's an idea; when you sit down to your next meal, pay attention to how you feel while you are eating. When you feel hungry, that is a stress. So, you eat your dinner and towards the end of it you start to feel full. Feeling full is a stress limit on your stomach. Whenever you breach a stress limit there is always a consequence. Overeating will make you feel bloated or sick, for example.

Now, lets consider another area of stressors. These are stressors that you face every day. They likely mean nothing to you at basic levels if you don't have a disorder. Environmental stressors, like odors, temperature, sounds, weather, traffic, and even other people bombard you every day. Your typical person learns to filter most of these out as they go about their daily routines. Even these stressors can be too much for you though. When you are tired and trying to sleep at night, you don't want to listen to your neighbors stereo rattling your windows.

So what are your stress limits? Well, consider your stress level through the day, like a weight scale. Take into account that all forms of stress add toward your personal limit. If you get enough rest and are of good health, you should start out your day with low stress and energy to move forward with. As you go through your day and handle work and various things that pop up in life, these will add in their own way. By the end of the day( which is different for everyone) you feel tired and need to rest for your next day. This can also change based on how much stress piles onto you in a short amount of time. That is the clincher.

With disorders like autism, PTSD, MS, Bipolar and various sensory issues, the limits to stress are not necessarily less. Instead, the senses and mental limits take on their full limit faster than with other people. In autism, the brain may not filter out all the stressors like typical person can do. Thanks to that, if you have autism, your stress limit in your senses may be maxed out before you even get your day started.

Having senses too high or low in sensitivity creates high demand on anyone. It makes your interactions and reaction with the world around you chaotic at best. That also creates frustration which adds to the stress and then you're even worse off than before. Then other people lose their patience with you (as you are likely also doing for yourself) and guess what? More stress! And, chill out doesn't work.

Improvement can be found in practice for some, but it depends entirely on the person and how strong their disorder is in them. Just like lifting that weight. If you do it every day or even just every other day, your ability will increase. You will be able to lift and lower more times before you have to stop. Some levels of our disorders will not allow for this. Take Multiple sclerosis for example. As a progressive condition, it takes away from what your body can tolerate or do. The practice may slow it down, but it it's strong enough, it will overcome your best efforts.

Because all stressors lend toward your full limit (yes some can be rested from in short periods), people with disorders reach lost limits much faster. Some are always at their full limit. If you were at your full limit on stress like that, you might find it easy to "freak" too.

Autism and fractured communities

On every autism group website I have visited I see a claim of community. We claim to be a community coming together or already there. The truth is, autism is the one medical condition that has more dissension and diversity amongst the members of it's community above any other. Allow me to explain that.

Anti-vaxxers, curebies, ND's(Neurodiversity), SA's (Self Advocacy), and even "Autism traitors" are labels we pass out indiscriminately amongst ourselves. At the same time, we adamantly shout not to label us. Along with those labels are heaping helpings of hatred and insults. One side or group is constantly bashing away at another for some perceived insult to their very existence. For one "group" that I haven't seen a label for, may as well give them one and call them "Parent Haters" or PH's. This group is more adversarial towards parents of autistic children with accusations that they are only trying to "cure" their children for their own selfish needs (and destroy who those children really are in the process). Then there's hatred to NT's (neuro-typical people) that is just as bad. With all this internal segregation, let me ask you something;

How can we expect to ever be taken seriously? I have searched other medical conditions for this phenomenon. I searched bipolar disorder and multiple sclerosis, for example. I searched cancer and physical disabilities too. Autism is the only medical condition that acts more like some kind of deranged politics mixed with religious standings. It's putting people at each others throats. Believe it or not, I actually have a theory or two as to why this is happening.

It really comes down to two things:

1) The fact that autism affects each person and family differently.

combined with

2) The inherent social blindness of autistic conditions.

For example, here is a quote from a PH: "I don't need a cure or treatment, so why should anyone else?"

It's well documented that people with these disorders (and this is why it's seen as a disorder) miss how other people are affected by various issues (including autism). There is a natural tendency to expect sameness in a personal view within everyone else. It's like we forget that, just because we see the world in a certain way, we aren't like everyone else. We forget that everyone sees things in their own way. This is especially destructive in autism as I listed above.

Autistics who don't believe they need treatment or cure, automatically assume that no autistic needs treatment or "cure". And I say "cure" very loosely because there isn't one. The same can be said for those who dislike diversity or advocacy. They lose sight of the fact that everyone is different and has different needs. Not everyone has the same intensity of those needs either.

Another example is the eruption of internet flame wars where the slightest difference in base opinion becomes an accusation of being the Anti-Christ and gets accused of criminal bullying on all sides. This erupts in waves of inappropriate behavior to include creating "blacklists", negative blogs, and even direct angry emails. And while all sides shout "bullying", none of them stop. Yes, I realize flame wars are part of any internet meme and I've seen them. I just hadn't ever seen them at this degree before. It's about as volatile as high scale nitro glycerin, and most of the opinions aren't even meant to be insulting, or could just be ignored.

A lot of the internet wars happen because of high sensitivities in all parties. Those same sensitivities are very common in autism.

We need to stop and remember that there is more than one way to be affected by autism. The more we persecute parents over their children (none of anyone's business by the way), people over advocacy, diversity, or wanting disability rights, the worse we all look as a result. None of these beliefs are facist, racist, traitorous, or out to destroy us all. None of them are criminal or wrong.

Someone wants a cure? Let them. No one can force it on you. No one can make you get an abortion either.

Someone wants help for their child? Let them, it's none of your business. And if you are a parent, try worrying about your own kids.

Someone says "neuro-diversity"? Let them. It actually has helped some people and that's a good thing. You don't want it, you don't have to have it or subscribe to it.

We need to stop assuming we know what everyone else should have or do. You know how we hate words like "retarded"? How about "crazy"? Well, I have talked to people who have seen all the behaviors above and they can't see is as anything but "immature" and "crazy" too.

If you want to represent something, make it something helpful, not hateful.

Cyber bullying drama: Putting out the fire

There is a Facebook page being circulated that I will not name. I won't name it because I don't want to give it any further power and frankly, it doesn't deserve any of the attention it's getting today. What it's doing is definitely wrong and who ever is behind it should be held accountable. That's easier said than done.

When people post horrid things on the internet, what they really want is your attention and disdain. Mostly attention. In this case, a person or persons has listed names of people in a negative way. It's a common behavior, especially with no facts listed to give the least bit of credit to the accusations. So, it's really not very elaborate.

http://en.wikipedia.org/wiki/Cyber-bullying

http://www.stopcyberbullying.org/index2.html

http://www.cyberbullying.us/

http://kidshealth.org/teen/school_jobs/bullying/cyberbullying.html

http://www.ncpc.org/cyberbullying

Please peruse these websites for information on cyber bullying. What's sad about some of the cases here is that these are adults, not high school children. Adults should know better but even so, they get lots of responses that only fuel their fire. So I'm going to share what I learned from direct experience. These are the truths of these bullies to remember;

1) Nothing will change their minds. No matter what you do to try and "shame" them, it won't work. In the same manner, you cannot reason with them either. No matter the real reason behind what they do, they either take pleasure in it or see themselves as some kind of authority figure, dishing out "punishment".

2)Anything you say will be twisted against you, no matter why you said it.

3)The more anyone responds, the more power it gives them. It doesn't matter if you responded to insult the bully or reason with him/her. They especially enjoy it when one of their targets is responding.

4)The only way to silence them is to ignore them. They will eventually move on to other targets.

Now, everyone who is a target of this web page, has every reason to be upset. They have every reason to want to stand up for themselves and give a bully a nice black eye. But this is the internet and a black eye doesn't always land as intended. So here is what you need to no in gauging the threat of an internet bully.

1) Capacity of true danger: How dangerous is this person to you? Do they have your personal information? You should never post personal information on the internet. If it's there, remove it! Can they physically show up at your home or place of work? Can they contact there and have they tried? You need to look at just how physically dangerous they could be. Yes, how much they can do in cyber stalking at home and business is also important, that means they have your personal information and you should report them.

2) What are they actually doing? You need to take a long look at their behavior and ask yourself what it really means in affect to your life. Can their words on a screen actually do something to you? If all they've done is post a name with some random accusation, that really can't do anything to you. Most reasonable people, if they see this will be able to piece it together for what it really is and move on. If they've posted your personal information, made threats or suggested others should hurt you, then that would be illegal. If they are contacting you directly and you save the info, you may have something against them.

That brings me to a fatal issue you need to know about these conniving internet bullies. They know a secret. That secret is that, so long as they don't contact you directly, they can post what ever they want on the internet about you. The idea is to trick you into contacting them so they can say YOU are the bully. They will use passive aggressive tricks and go to great lengths to employ them, without ever making a single threat. So long as they upset you, they are getting what they want. The evidence is in your response.

That's why self defense against the internet bully.... is silence. And sadly, you can't everyone to do that, so they will get the attention they desire. But what will you do?

Examples of what don't work:

Write a blog about them, name and shame: They'll just do the same thing and claim you are lying about them, you bully.

Attack them right back: They'll use it to say you attacked them, with name calling (if used) and anything else they can make look negative. Your anger is their friend.

Email them to get them to stop: anything you send is evidence of bullying for them.

Now, the best thing you can do if you aren't sure (before you take ANY action) is to call your local police and ask them what to do. Then... you do it.

Don't give this person the time of day. Don't give their name credit. They should be nameless and never known. They want infamy, why give them what they want? After all, there's more than one way to apply self defense. Fighting back doesn't always mean being aggressive.

Autism: Expecting too much of ourselves

There is a trait in our self patience I want to talk about today. I don't think this is in all of us but it's in me, my son, and I've it in many others. We have a tendency to take the world around us very seriously. In doing that we take ourselves twice as serious as anything else. We don't give ourselves margin for error. We get very upset with ourselves in the process.

A witness may not understand where the sudden anger came from. They might even think we are angry at them or someone else in the room. It's amazing how hard it is to explain in the midst of the moment. Where do such high self expectations come from?

For one, they come from wanting to be acceptable to everyone else. To us, we see our shortcomings as very expensive and potentially damaging. If we've had bad experiences in the past with others misunderstanding our mistakes (and most of us have)it compounds the issue. Past experience may include bullying, where enough daily taunting hit its mark. Dealing with impatient parents, teachers, or any other adults who punished us for those shortcomings make a mark too. It's hard to overcome your programming from youth.

Think about it, if you grew up with a condition that made you struggle, and no one gave you any patience in it, would you give yourself any patience today? I doubt it because you were taught otherwise. With a natural tendency to take things too seriously, we are at a disadvantage from the start. It's also what causes us to not do so well with stress. We can carry only small loads in that department.

My 9 year old son, already has hardships with himself. We counsel him on them the best we can. We tell him that everyone makes mistakes and they aren't the end of the world. We teach him that a mistake is an opportunity to learn something new. We teach him it's not worth being angry at himself. Hopefully, by starting in his youth, this will make a big difference for him as an adult.

For me, it's a hard lesson because I was taught the other way harshly. The bullying was hell and they often said I deserved it because I was a screw up in their eyes. There were a lot of them and the school was unmoved to assist. Have enough bullies on you and society takes a new shape. The drunken and drugged step-parent figure didn't help. I had no safe place to go. The only marginally safe time of day, was when my father got home from work. Even then, I would hear her ranting over what a horrible child I was to the point of screaming and yelling. Her punishments that included drinking sour milk, chemical burning my hands, and screaming daily obscenities also taught me the wrong lesson. I was taught that mistakes are not allowed, or you will be punished most severely.

So, now I'm hard on myself. It's not as bad as it was just a few years ago. I can give myself credit for what I've learned. I've come a long way. Now my story and these facts serve to help others. As with any of my blogs, I am glad to have it shared where ever my readers feel it would help. Just use a link back to here for shameless credits sake, right?

Remember to give yourself credit, it's actually a healthy thing to do.

Autism: What they want you to know

Recently I posted a question on several autism Facebook groups and my own Facebook page. The question was: What do you want people to know about autism? The answers not only provide an educational view but demonstrates varying views of having autism. I'm going to go over some of those response here and I hope you find them enlightening. As always, feel free to leave a comment (comments moderated for language).

Answers:

-Autism is treatable, not contagious, not the end of the world, not a death sentence: From mild to severe, autism's comorbid effects are treatable and manageable (though to varying degrees). Parents of children with autism want you to know that their children are under medical management and not going to drop dead in the middle of some grocery store or park. In the same light, if you are a parent of a newly diagnosed child, it's not the end of the world. Learn about autism and research it heavily. It's one of the best things you can do. Finally, autism is not contagious. No one is going to turn autistic by being around someone with autism. I don't care if he or she sneezes on you directly. You may catch a cold, but not autism. So there's no need to snatch up your kids and flee the neighborhood park on sight of anyone with autism.

-People with autism can rise above their challenges: Even some children or adults with severe autism may surprise you. While there are people who need help for the rest of their lives, there are just as many (more in fact) who can do all sorts of things. There are lots of children who are in mainstream classes in school, capable of dressing themselves and learning complicated tasks. So, just because someone has autism, it shouldn't be assumed they'll do nothing for the rest of their lives.

-Don't apologize to us: One parent pointed out the annoyance of people sympathizing with her as if her child were already dead or lost forever. "Oh, I'm so sorry to hear that" is fairly insulting. As a stranger you don't know anything about the person you're sympathizing for. How do you know they need it? How do you know how they even feel about autism? They may be managing perfectly well and only told you for sake of education and understanding. I've had this said to me over my own autism and I said "Not needed, it's my challenge and I live with it just fine".

-Autism doesn't stop because of age: Several parents want you to know that autism doesn't mysteriously go away because of age. It doesn't stop because someone turns 6, 7, 16, 21, or 60. While a select few have treatments that can effectively bury their autism, most will always have something that shows. Many will continue to need certain supports or treatments their entire lives. Remember the above as I say this, though, because needing support or treatment doesn't mean you're a total invalid.

-It needs to be managed, not fixed: People with autism, who area able to communicate this, want you to know they don't need to be fixed. As above, autism is treatable with various support, training, and even the occasional medications. While needs vary by person, it doesn't mean they are broken.

-We have feelings, are still people, need friends and social interaction too: It's also said that just because someone is non-verbal, doesn't mean the don't understand you. There is a movie called "Mozart and the Whale" where the main character is a man with Asperger's who runs a support group. He says in the movie, "We actually want to socialize, we just suck at it". Again this isn't typical for everyone, but it's fairly true by my experience. So, keep in mind that, just because their condition can isolate them, it's doesn't mean they like it or want to be that way.

-It's an invisible disability: It's not a fad, over diagnosed or over blown. Not everyone is disabled by it, but some are and some severely. Just because you don't see missing limbs or deformities, doesn't mean they have no struggles or aren't disabled. Most people who make the insulting observation: Well you look normal, are forgetting something. I have yet to meet just one person who says this who is a doctor. People with autism or even bipolar, don't want to hear about how normal they look. They find it belittling of their struggles and insulting. Having these conditions have nothing to do with how we look. We would like you to remember that.

-Too often mistaken for brattitude: While behaviors still need to be monitored, children with autism will act differently than typical children. They will behave in extremes and are usually delayed in maturing. That means an 8 year old may very well behave emotionally and socially like a 3 year old. These kids aren't being spoiled brats (in most cases), they are struggling to cope with the world around them.

-Autism affects the whole family: It takes a village to raise a child. That couldn't be more true with autism. Having to deal with an autistic child affects everyone in the household. Not only does the child need support, but the family does too in their own way. Siblings may get upset because they feel their autistic sibling gets away with more than they do. Adults may clash over support issues. It's not easy to balance an autistic household.

Finally, just two more. While I would like to post all of the awesome comments I got, I just don't have room.

-It's a manmade pandemic: I have to post this and call it to task. Remember what I said above? A pandemic is an epidemic of infectious disease covering large areas such as continents or world wide. So the comment is incorrect in the idea of a pandemic because autism is not contagious or infectious. It's not an infection. But manmade? That's entirely possible and even probable. Generations of exposure to major pollutants like lead, asbestos, chemicals, drugs, and yes, even mercury with varied environmental factors have damaged our gene pool (how could they not?). At this point, there is no single factor that causes autism, rather a collection of factors. So, did we do this to ourselves? Maybe.

-It's a gift not a burden: This comment struck me as important too. It shows that not everyone with autism in their lives thinks of it the same way. There are plenty of people who say "autistic and proud" and it doesn't slow them down much. They say they are fine in life and need no assistance or treatment. We do need to remember however, that this is not true for everyone. Not everyone feels gifted, is gifted, or can go without support. We need to respect each others feelings and realize not everyone is affected the same by autism. Also, just because you are doing awesome, doesn't mean everyone can do what you do. The fact of this demonstrates the autistic blindness to other peoples conditions that comes with being autistic. So please remember, not everyone feels gifted.

So, feel free to leave your own comments here about what you want people to know about autism. I had lots of great comments and I'm sorry I couldn't post them all.

And the bottom line, autistics are people too.

Autism: What's your child's special skill?

See that question in the title? It's a common and yet fairly ignorant question and I'll tell you why it's ignorant. It assumes that every child with autism has some savant super ability that puts them on a pedestal or makes them a circus attraction. This is a situation explained in the book Understanding Autism for Dummies. Be sure to check that book out if you haven't already.

So where does the confusion come in? Aren't we always pointing out the cool things our kids can do? Why do we do that? We do that because we want others to know that our kids can do just as well as any skilled child without autism. We don't do it because we want out kids to be circus attractions. We don't do it because we want it assumed that all autistic kids have some special ability.

Do we have special abilities? Maybe, but our attention to detail for our special interest (for those of us who fit that description)really don't make us any better than someone highly skilled in their own profession. We just want it known that we can fit in somewhere, there is a place for us. It's part of wanting that understanding.

So, for those parents who feel sick in the gut at strangers asking them that special question, I have some fun answers for you. This is in the spirit of having a good laugh. Of course, if you feel your child has (or he/she actually does have) a "special skill" then that's awesome. You should definitely go with what you feel best. Till then, here are some answers that will definitely stop the ignorant onlooker cold.

Person: Oh, autism? What is your child's special skill?

Parent:
-He juggles baboons while balancing on a rubber ball.

-He fights lions with his teeth.

-He's a tax attorney. Not bad for 8 years old, right?

-He's a stunt driver.

-He's a brain surgeon.

-Why, he just joined Hell's Angels. He sure loves his bike!

-He builds explosives.

-He's a sword swallower.

-He's a third world dictator. Took over two more countries just last week.

-He barks and chases cars.

-He's a Marine Corp sniper.

-He's a serial killer. Watch out if he gets his hands on a banana.

-He wrestles alligators.

-He's a gangster mob boss.

-I don't know, but he's great at endangering himself daily.

-He puts pencils in places you couldn't imagine.

-He can fly and shoot lasers out his eyeballs.

-He's a professional bodyguard, do you need protection?

-He eats things, all sorts of things.

-He makes noises that will tear your ears off.

Of course, you could just tell them that he's just like any other child but with a few differences. Even so, I hope you had a good laugh, we could all use one from time to time.

Autism: Fitting in

For families with disabilities of all sorts, fitting into the local social dynamics can be quite a challenge. When your condition makes social skills hard, it's even worse. Not only do you get the judging eye of society cast at you, but responding to it is hard.

I'm sure everyone has had their day being shunned for one thing or another. Plenty of people on the spectrum who read this know exactly what I'm talking about because they've been through it themselves. And the outcasting of peers does little to help a struggling person do any better. Bullying and rejection cause increased anxiety, further psychological damage, and more stigma on both sides.

So what can you do for your kids or yourself in the face of social adversity? Maybe if you don't fit in, you can just pick up and move somewhere else? Not quite. Most people who suffer from these conditions (heck most people in general) don't have the funds to just pack up and ship out when things get tough or because they "don't fit in". The truth is, the only time you should move is when it is unsafe for you to stay or you can increase the positives of your life (new careers).

The first key to anything is education. The next is learning as much as you can about society and where you can go as possible. So, actually, that's education both ways. The worst thing you can do is seal yourself off and not go out anymore.

You have to go out and find places you can be. If your direct neighbors aren't very nice, don't hang around them. Seek out groups of people that are more like you and more accepting. These can be school groups, hobby groups, or people of various similar interests who just hang out.

You have every right to live and be where you are. With that out of the way and some ideas for groups to find, how do you fit in to basic society? Some people say you don't have to, but there are a few things you need to keep in mind. A few tips:
For either yourself or to teach your child (teaching children should start early, but it's not too late, right?)

Morals: These are rules of respect people live by and they can get complicated. Start with these simple ones:
-Keep all your body parts to yourself, minding personal space of others. Do not touch anyone without their direct permission or invitation. That includes their property like purses or other items.

-Respect the privacy of others and mind what is personal and what is not. Things that are personal that you should avoid commenting on are sexual issues, money, and a person's own conditions or appearances.

-Harm no one. Avoid fights and do your best never to hit or kick anyone. This includes self defense issues where you could walk away.

-When talking to people you don't know, address them as Sir, Ma'am (or Miss if "younger"), or by their occupation such as "officer". Speaking politely to people helps a lot.

-Respect the beliefs of others, even if you don't believe them yourself. This one can be hard and can get you into trouble with large groups of people. While you are entitled to your own opinion, you will find less stress in life if you keep it to yourself. You don't have to believe what others do either, take comfort in that.

-Respect laws and the rights of others. Don't steal, rob, or commit crimes. Stay out of drugs and alcohol. Some communities are alcohol heavy and I've seen them, but I don't drink. That has gotten me laughed at, but never cast out. I just tell them to be sure and enjoy on my behalf.

You don't have to do everything people in your community do unless there is a law or it's a matter of respect to others. Situations vary, but this is something I have found to be a truth in my wide travels.

As it is, we cannot be expected to be "normal" because we are not. Some of us are more eccentric than others, yet harmless. If you are doing something that makes you stand out in a way that could be dangerous to you (like failing to wear clothes in public) you should change that. If you just dress more colorful than others, you may be laughed at, but you should ignore them. They have no right to carry that any further.

Again, these are basic tips, nothing is perfect for everyone. What can you do?