Understanding Advocates

First, another looks at Webster's definition: A person who writes or speaks about a cause.

That's me. But there are other kinds of advocates out there, both good and bad. On the internet, the differences get blurred. Hopefully, this article will help define the lines. So what kinds of advocacy are there? Here's a list:

Individual: for the rights of a single person

Self: for the rights of yourself

System/Political: to promote changes in a broader system or promote a broader cause that affects a greater number of people

Legal: legal rights of various degrees (this can branch to the others easily, but issues will require someone with legal training)

Legislative: for changing laws which can branch to system political at times.

So, you've got problems. You're child, who needs and IEP is having trouble in school and it seems the school will not listen to you. You may need an advocate. Like many people nowadays, you turn to the internet and you find someone who says he can help. He says he can force the school system to play straight. Sounds great. Then he asks for money for airfare to come and visit your child's school. He plays on your desperation and you give in. You send the money and he never shows. Either that, or he actually contacts the school and ticks them off so badly they'll never work with you. So how do you know if you have found an advocate who can help you?

This is something I've actually helped people do several times over. My form of advocacy is in education. I believe that the more we learn, the better off we are. I advocate for people to learn about conditions to help erase stigma and abuse. So I give lots of advice for people looking for help.

What to watch out for on the internet with advocates:

Asking for money. Depending on the kind of advocate you are looking for, you shouldn't be looking to connect with them on the internet. Any advocate who's asking for your money, you need to look at closely. As in my last blog post, ask questions. Often they'll make wild claims of what they can do and what degrees they have. If they can't be verified, run. If you ask and they get belligerent, run. Verify all information. Let me write that again, verify ALL information before giving any money to anyone for their "advocacy".

Now let me tell you what an advocate is not and shouldn't be. An advocate is not some special authority who goes around demanding answers of individuals or other advocates for every detail of their doings and lives. They are here to help people, not police them. When Nick Dubin, a well known advocate for autism, was arrested; I was contacted and asked why I wasn't demanding answers and writing blogs about Nick Dubin. Simple, because that's not what an advocate does. I'm not trying to write the National Enquirer of Autism here (some people are and do). I'm not writing the gossip column of autism either. That's not what an advocate does. That's not an advocate, period. Now, there are plenty of advocate blogs out there and some of them are indeed doing just that, some aren't. You have to judge for yourself, what kind of information you are looking for. But I challenge you, look up definitions for yourself of "advocate" and see how many times you see "vigilante" or "gossip columnist" in the description. You won't.

Now, what's the best way for you to find help for your child? Every place and state has lay advocates of some kind somewhere. You just have to know where to look for them. Here are some updated ideas:

-Look in your phone book or online for your states Ombudsman's offices. Call them, they can often give you solid advice of where to go if they can't help you themselves.

-Contact your state's chapter of the Autism Society. You can google it by "state name" Autism society, try it. They often have lots of links with people and groups you can call.

-Google for your state and a chapter of NAMI (National Alliance for Mental Illness) and contact them.

-Contact your states or county school board and request a hearing for your child. Most times, this costs nothing and it's part of your rights for your child.

-you cold google School Advocate and your area, town, county, or state and see what you get, but remember the above.

Just a few ideas. Do you want to be an advocate? In my next writing, I'll tell you the do's and don'ts from personal experience and more.

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: 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?

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.

What does understanding mean for us?

What is it that we really want from the general community? Acceptance? Understanding? Equality? I think, in one way or another, all of those apply. I think, however, that understanding is the most important because it leads to the rest.

People who don't understand have come back with comments like:

"Why should you get special treatment?" and "Just get over it." or "You look normal to me." These are dismissive statements and I don't know about the rest of you, but I don't like them. They belittle my struggles and those of my son. These are the same kind of people who would see a melt down or odd reaction from one of us and call us "weirdo" or "strange" or "psycho". That is where the education is needed. That is the understanding that I would like to see corrected. Understanding means some of these people stop labeling us and creating stigma in the community.

Stigma in the community makes outcasts out of innocent people. It makes it hard to get jobs. It makes it hard to walk down the street with any dignity. It's degrading and wrong.

And why are any of us so sensitive to this acceptance? I think it's because our difficulties make us sensitive to it. When things don't come out they way I intend them to in conversation or what ever social issue, I cringe and it's usually too late to do anything about it. When I have one of my sensory issues, well, I've had a careless stranger outright call me a wimp. He looked like a jerk to everyone but I really wished I didn't have that sensitivity.

So what are important things to know when someone says, "I have autism"?

-No matter how normal I seem, there are times I won't be.
-It doesn't make me dangerous.
-My reactions won't always match given situations.
-I will miss social cues and facial expressions.
-My "strangeness" should be taken with a grain of salt and I should not be an outcast for it.
-There are things I cannot tolerate because my sensory input doesn't work right.
-There is a person in here, get to know him before you judge him.

And for kids:

-Odd behavior does not equal dangerous behavior(to others anyway- there are exceptions).
-Same sensitivities and reactions as above.
-Autism is not retardation. It is possible to have both, but it is not the case in every person.

I think people should know that the person trapped within can hear them. I grew up being called "that effed up kid". I remember the people who said that about me and it didn't feel good. So what we really want is to be understood because that would allow us to work easier with the world around us. We're different and interact with the world around us the way our senses lead us. We can't control how we are wired.

I'm sure there are many things that can be added to this list above. Feel free to add them in comments.

Getting help with autism

You just got the news. You or a loved one has been diagnosed with autism. Your blood runs cold and you sit in shock. What now? What’s autism? What do I do? Take heart, you aren’t alone.

The CDC’s newest statistics show that one in 110 children have autism. Autism has proven highly hereditary in it’s forms that aren’t thought to be vaccine triggered. The newest diagnostic manual (DSM) followed by doctors states that all the forms of autism to include Asperger’s are accepted as simply “autism”. That means there is help out there, for all levels and forms. That’s not to say that getting proper support is easy and there are still insurance issues across the country, but you mustn’t lose hope.

First of all, you need to know where you can find resources, advice, and help. I’m going to tell you how to do that right now.

The first resource that I am giving you is the Autism Society of America. They have a chapter in every state and are the most in depth source of all resources you can find. To find them, go to your browser and put in “Autism society of *blank*”. Blank is where to put the name of your state. It is possible to find societies in Canada and the UK as well. Just put your province or state location in the place of that word, ‘blank’.

On most of their pages you will find a link that says RESOURCES. Click on that. You will find a list of organizations and offices in your state with phone numbers and locations. Pick up your phone and start calling them. Most of these resources can give you a heads up on what doctors are the best to go to for autism and what schools have the best resources, depending on what is reported to them. You may also find other families who have dealt with autism longer than you and can share advice on what has worked for them. Some state health departments even have an autism representative who can work with you. Can’t hurt to call and ask!

The second resource I have for you is NAMI (National Alliance on Mental Illness). NAMI is pretty much US based, but they have excellent information and links to resources for pretty much every state. To find their chapter for your state, go to your browser and type in NAMI and the name of your state. When I go to the Wisconsin site that lists as the National Alliance for the Mentally Ill, I click on services and find a map with all the counties of Wisconsin. I click on my county and get a long list of mental health services for my area. The rest would be up to me, to pick up my phone and start calling. Some services may be listed with both organizations.

The third resource is the advocate. If you really feel lost seek out advocates in your area or even right here. We volunteer our time to help you find the information you need and many of us live with the exact same or similar conditions and don’t mind lending advice or letting you just vent to someone.

So know that you are not alone. There are thousands of people and families dealing with autism and vast other mental illnesses and disorders. There are lots of websites, forums and groups with others just like you, right out there. Don’t lose hope.