My neurological journey

Conditions are deteriorating. Things that remind me of that happen more frequently now. In the beginning no one could find any proof of the damage in my brain. I've researched websites to include places like the Mayo clinic and found that it's not easy to find the proof sought. It has to be drastic to show up on MRI's without a dye contrast. I was unlucky enough to have doctors who wouldn't run an MRI with contrast unless I was flailing on the floor. That compounded getting diagnosis accurately.

I even saw two neurologists and both of them discounted and dismissed me. The second literally kicked me out of his office only because I have bipolar disorder. He wouldn't hear anything I had to say.

In the mean time, I've consistently and slowly been losing my balance. I wear out faster than ever, despite exercise. I have vertigo over simple and slight movements of my body or head. And my cranial nerves hate it when I try to lift something heavy, even if I'm physically strong enough to. I faint or have a fainting spell. Coughing is dangerous, it will knock me out. Sneezing causes nerves in my neck and shoulders to react and stun me. It's called a brachial stun, used by police officers to subdue unruly suspects. And the contused nerves in my forehead hurt a lot and often. All of this seems to go hand in hand with my sensory disorder and make it worse too. It's all be gradual, but I can definitely tell the difference.

Maybe my problem was how the doctors in the areas I lived did things. The first time I spoke about this to a doctor here in Louisiana he set me up with a contrasted MRI. It came back as quote: "unusual". To that I say THANK YOU, it proves I'm not crazy or imagining things. I've talked to lots of people who have gone through this in trying to track their health and take care of themselves. It's a diminishing and dehumanizing feeling when doctors won't listen to you. Then it's a Godsend when they do. Maybe, now that I have an updated MRI that actually shows something, I'll have better luck with the new neurologist next month. Yeah that's as soon as I can get in and I have to drive fifty miles too.

In the mean time, my short term memory is crud. My coordination is worse. Last night, I was having a bowl of chili. I went to get a spoonful and slammed my hand into the steaming hot mixture instead. It dumped on my lap and scalded my hand. I can't tell you how much that messes with my head when that kind of thing happens. Two days before that, I spent an entire day in what felt like a narcotic fog. No, I hadn't taken anything stronger than tylenol. I was useless for the whole day. I didn't hit my head, or get sick. I was just fogged beyond belief. I've had to catch myself on doorways, walls, and getting up out of a chair is treacherous.

As these things happen, I find myself saying "what the hell?" I'm only 41. Didn't I have enough to deal with in my autism and bipolar? Or maybe it's something more depreciating than bipolar ever was. What if the bipolar was MS all along? I don't know, but sure hope to find answers soon.

I do everything in short intervals, even this blog. It sits on my screen as I stop and rest my hands in between. It's a struggle I won't give up, even if I eventually have to have someone else type it. If I can get someone (ha ha on that). Well, I will post on my journey more as it happens. Till then, be well.

(Do you like heroes? Please be sure to visit my Galaxy Zento blog, follow it and come to my fan page at: http://www.facebook.com/pages/Galaxy-Zento/233056856752787

Making Changes

Hello, my friends. I am making some changes to my blog and you may notice this in the coming months. I have deleted some negative entries that really don't help anyone so that the more helpful entries are easier to find. I will likely still be deleting a few more that don't need to be here, but in any case I will also be slowing down on my autism blogging.

I will also stand for autism education and try to find subjects that help with that from time to time. I don't know how often that will be, but I will certainly try.

So why the change? I am pursuing something in my life that has been put all but on hold. I invite you all to follow along in the new blog titled Galaxy Zento. It's my fantasy universe I have had since I was a kid. I want to do more on my fiction writing and that requires time management.

So, I'm not quitting this blog, just rearranging my time in writing. What that will eventually do to his blog in the future, I cannot say. It will remain online however, even if not active. As always, I welcome new readers and would love to have you add me on Facebook or become a fan of my new work. If you like heroes and villains and a good story, you'll like Zento.

Always moving forward and always standing for education!

Autism and learning social skills

A wonderful question was posed to me recently from Lisa on Facebook who said:

"You mentioned that folks on the Autism Spectrum are affected by autistic blindness and do not necessarily do well at recognizing other folks' feelings and needs. Do you have some specific suggestions about how to be autistically un-blind?"

That got me thinking and I have a few ideas. Maybe some of you helpful readers could add your own in comments? Comments are moderated for being family friendly.

I've written on teaching out kids social skills, but I hadn't really thought about helping those of us who are adults today. We didn't have the same supports that are there for our kids today. It's a different world.

So what are some key and important things to know about socializing that help us recognize how others are feeling? As I go over these, the key is being able to add them together to get an accurate feel for the other persons attitude. This takes, practice, practice, practice. So try not to get discouraged. Also, click on images for larger view.

Facial expressions: While they are inconsistent in the autistic world, in a typical person they can tell you alot about how someone is feeling. Expression works best in the eyes (something that may be intense for you in the first place, I know). Other telling features are the eyebrows and mouth. Tightly shut mouth (pressing lips together hard) and furrowed (v shaped) brow suggests agitation or tension. Not necessarily anger, but could head that way. Raised eyebrows show interest. Tight lipped and avoiding eye contact (looking at the ground or off into the distance) could mean being emotionally upset. Smiles can be tricky. Usually they mean amusement or just having a good day. Maybe glad to see you? Sometimes it means they're nervous. Confused? This is where the next area comes in.

Body language: The positions people hold their bodies in as they interact are very telling of how they are feeling. When it comes to smiling, as above, this is particularly helpful. So lets break down body language.

Head: Tilted to one side is curiosity or interest. It can also be silliness if the person is acting out with wide gestures and strange facial expressions. Tilted forward (with eyes looking up at you) is a "get down to business" expression. It means they want you to get to the point of what you are talking about. Tilted back and looking down their nose at you is of interest but scrutinizing. This isn't necessarily unfriendly, but the person is likely reserved on what they are thinking. I should mention that the "down the nose" look is commonplace with street gangs. You can tell them by their clothing most times. It's more pronounced with them though. In average people it's more relaxed. You can google pics of expressions which I highly suggest for practice.

Shoulders: Drooping down means boredom (especially with the head tilt and a curved lip) or frustration. It also signifies depression or sadness. Generally it's not a positive thing. Held upward and level is a sign of confidence and alertness. These area extremes and mid ground is possible.

Arms: A big "tell" is crossed arms. This usually suggests that they don't want their personal space invaded. It's a matter of personal security and may signify discomfort. If they back away, draw clothing around them tighter, cross arms (the tighter the more you should give them space) then they are uncomfortable. Don't close in on this person. I'll get to personal space in a bit. Arms just hanging at the sides or in pockets is casual and relaxed. Movement of arms can tell a lot too. Wide sweeping gestures with raised voice and agitated expression may be something to stay back from. That person is likely upset.

Hand: Watch for clenched fists. This is the fastest way to tell if someone is agitated enough for you to steer clear. You don't have to run for the hills, but something is upsetting this person severely. They may be traumatized (watch for crying, shaking shoulders, and trembling in arms) or angry (watch for gritted teeth, v shaped brow with similar trembling). Hands that just tremble may be from a medical condition and not something alarming by itself depending on the person.

Legs: While sitting, crossed legs is very similar to crossed arms, though not as dependable because a lot of people sit this way. Both crossed legs and arms is almost definitely a security issue. They don't want you that close to them (or maybe anyone else either). While standing, shuffling feet around a lot could be a sign of agitation or just being antsy and having a hard time standing still. They may be in a rush to go do something else. Be careful not to stare at peoples legs, especially in the region of the waist line/torso. Guys, that is especially important for you. It makes people uncomfortable.

Note that there is no perfect way to recognize what people are feeling. With practice you can be right 7 or 8 times out of ten. Don't be discouraged if you don't see it all right away.

Now for some pointers on interaction.

When you approach someone, if they back away, do not close in. They are telling you how close they want you to be by backing away. Give them their space.

Be careful of staring too much at a person. If you are going to hold your eyes anywhere, look at their nose and cheeks (if not the eyes). Veer away casually from time to time as if just noting your surroundings.

If a person is nodding while listening to you, you are generally okay in your position. They are interested in what you are saying. Or they're just playing along, hard to tell sometimes. You may be able to tell by adding in other factors as above. Are they constantly looking away other places and shifting around? They may want to be somewhere else.

In closing tips, study facial expressions. Lots of pictures are here on the internet that you can find and look at faces. Same to be said for body language. The more you look and learn, the better you can interact. There is no perfect way, but remember to give people personal space and try to relax.

For personal space when facing someone, imagine the length of your arm, that is how far away you should stop (and don't approach fast, that startles people). Standing next to someone (unless in a crowded place) can be half that distance, but should be full length in most open areas.

Hopefully this information will help some of you out there in recognizing how others are feeling or reacting. Remember; practice, practice, practice. Never give up.

Good resources: Internet, or check out books on facial expressions for artists! Same for body language.

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.

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?

Autistic self injury and seizures

People have a tendency to see self injury as the "victims own fault". I have heard this many times and it is in error in many cases. Self injury occurs for several reasons.

Some do it for a release of endorphins that can cancel out pain. Often these people are seriously depressed or suffering other mental conditions. The fact that they seek solace in self harm should not make it a matter of fault. They still need treatment and without it, will continue to self harm. It may not be as much of a "choice" as it looks.

In the autistic the lack of choice is especially true. Consider this paste from an article on Autism.com:

"Self-injurious behavior has also been associated with seizure activity in the frontal and temporal lobes (Gedye, 1989; Gedye, 1992). Behaviors often associated with seizure activity include: headbanging, slapping ears and/or head, hand-biting, chin hitting, scratching face or arms, and, in some cases, knee-to-face contact. Since this behavior is involuntary, some of these individuals seek some form of self-restraint (e.g., having their arms tied down). Seizures may begin, or are more noticeable, when the child reaches puberty, possibly due to hormonal changes in the body."

Mine started when I was six or seven years old. More to quote:

"Since seizure-induced, self-injurious behaviors are involuntary, one may not observe a relationship between the person's behavior and his/her environment. However, since stress can trigger a seizure, there may be a relationship between stressors in the environment and self-injury. This may include too much physical stimulation (e.g., lighting, noise) and/or social stimulation (e.g., reprimands, demands). Foods may also induce seizures (Rapp, 1991). If the behavior began or got worse during puberty, one may also consider the possibility of seizure activity. If seizures are suspected, it is recommended that the person have an EEG."

See the whole article HERE.

I am on medication that helps to keep my incidents in check. I am very careful to remove myself from stressful situations that may cause an incident and have a "cool down" area in my home for just such issues. I use a fan for cooling and a white noise effect. I rest until my system calms.

My son has suffered this as well. If upset enough, he will bite himself or head bang. It's important to intervene on this as much as you can and as soon as you can. Medications may be necessary.

The dangers of long term head banging and self injury are permanent damage to the brain, cranial nerves, or skin. Biting can cause blood exposure, bleeding, damage to hands and arms, and permanent scarring.

I have to say that head banging is probably the most dangerous because of brain injury possibilities. Not only that, but damage to cranial nerves alone can cause significant disability. If the person uses their fists for all those years they can permanently damage nerves in the hands and wrists from all the hitting as well.

I have permanent cranial nerve damage and I can't tell you how embarrassing it is to have to explain it to anyone. I do though, for the sake of education. I just wish, if they could have done anything for me in my child hood, that they could have helped me with that. They weren't diagnosing autism in my age range or geographic area for age range in my teen days. No one caught on.

So it's important that you catch on now, especially if your child is engaging in self damaging behavior. Find out why and get it treated. Don't let it disable them permanently.

Autistic children and idle hands

Recently, this weekend, my son got up and took very good care of himself without waking us. He got dressed, made himself a toaster waffle (with peanut butter), and then played in his room until we woke up. We thought it was a very "big boy" way of handling himself and we told him so. Just to be clear, my son can wake up very early; far earlier than anyone wants to get up on a weekend. Six A.M. anyone?

We had a great day as well and felt very good about the grown up things he did. The feeling took a nose dive the very next day (this morning).

First, let me take you back to his toddler days. In those days, we had to be very sure we got up before he did or our home would be ransacked. Everything would be pulled out of the refrigerator and dumped on the kitchen floor. Yes EVERYTHING. If he could get to flour and sugar (and the little master climber definitely could) it would join the contents of the fridge. If his pull up/diaper had any contents he would smear them on the walls. We would find him nude and often in the midst of any mess. He would also set our caged pets free (rats at the time). We've found him in many interesting places. Sitting in the rats aquarium or on top of the fridge were just a couple of the more surprising ones. Toddlers will do these things if they are exploring on their own, but it takes an autistic toddler to defy reason or science. When was the last time you found your 2 and half year old on top of your six foot fridge? I rest my case.

Today, we see lapses that seem to take him back to the decisions of his toddler days. No smearing, thank heavens, but bad choices for a 9 year old. Today he decided to sneak desserts for breakfast. Yeah, that's normal kid stuff really. It's when he decided to saw marks on the kitchen cabinets with a steak knife that pinched it for us. This prompted a long talk about knives and what he already knew about them. He did, in his toddler days, play with a knife and cut holes in our bed sheets. I've taught him all about how to stay away from sharp knives and how they are to be respected.

And how did we find out about all this? He gives himself away, believing he will be caught, he spills the beans. He says, "oh I hate myself for what I did" but we don't allow that either.

I know this morning wasn't anywhere near as bad as his toddler days. What I'm looking at (and discussed with him) is the fact that he needs extra supervision and we can't allow ourselves to forget that. I want him to be the big boy who can make his own breakfast, but maybe he's not totally ready for that. I know this is a common point for our spectrum kids. They're just behind a ways really. I look forward to seeing him catch up.