Tuesday, August 31, 2010

Great Advocates: Autism Women's Network

If you hadn't heard of them yet and you are a woman with autism, you should check them out. The Autism Women's Network is there to provide support and information specifically for women on the spectrum of all ages. Just click on their name above to go to their website.

The AWN has notable successes that make them worthwhile. Their Executive Director, Sharon da Vanport is a radio host, consultant and speaker. Recently (July 2010) she even traveled all the way to the White House for the ADA Anniversary. Not everyone gets to do that, and she was specifically invited. Sharon has Asperger's Syndrome.

Another of their board is Tricia Kenney. She's a talk radio producer/host and a Missouri Director and Advocacy Coordinator. She's also part of Partners in Policy Making, a Missouri Classroom program.

Another notable contributor who has done a great deal of education on autism is Amy Caraballo, a writer for Examiner.com who has also worked with a wide array of organizations. Those include Autismlink and the Autism Self Advocacy Network.

You can find all three ladies' information in the Directors/Board section of the website. And while they are particularly there for support of women on the spectrum (and Moms too), they welcome supporters of all kinds.

So, give their radio show a listen (see website) and their site a look. If you are a woman with autism or a Mom feeling lost, the Autism Women's Network can help you. And I couldn't think of a better way to celebrate my 120th post.

Monday, August 30, 2010

Bullying in the 2010/11 school year

With every new school year it bears notice that bullying must be acted upon and prevented. Kids will tease each other. To a point that is natural, but should not go unchecked in teaching them how to respect each other.

Children who are chronically bullied are at high risk for social and psychological problems. My area in general, has very good anti-bullying programs. Unfortunately, I still read stories and hear from parents around the country and globe, that their area is in need.

You can do something about it. Talk to your school about an anti bullying campaign or activities. Talk to your school PTA because they can be valuable allies in corresponding with school and enacting those activities. Educate on what students can do when they see someone being bullied. Have kids make posters or have an anti-bullying day. If there's a school fair, see about setting up and anti-bully activity booth of some kind.

Kids have to be taught that it's not right to hurt others for entertainment. People's differences should be respected and not pointed out for laughter. So lets look at the new school year with determination. If your child comes to you about being bullied, take it seriously and talk to the school. Get involved to stop bullying.

Saturday, August 28, 2010

Disabled Advocates, Unworthy?

I've been thinking about somethings that have been said about advocates who are disabled recently. Comments that suggest an advocate isn't worthy of being called an advocate if they are on disability such as SSD.

First let me address this myth: SSD is NOT welfare. Social Security Disability is based on what you pay into it through out your working life. That's right, in order to have SSD in the first place, you have to have WORKED in your life. You have to have held actual JOBS. I didn't get to be on SSD because I whizzed my life away. I got hurt. It happens to lots of good people.

Now there was a comment about people on SSD not being allowed to use their funds for donations or luxuries. Well, first, they don't give you enough money in the month to live in any kind of "luxury" or to afford "luxuries" as most people would see them. So that's counterproductive right there. It just doesn't happen. If I could live in luxury, I wouldn't be on SSD. How much do luxuries cost? What kind of luxuries are we talking about? Should people on SSD just live as hermits and never go out of the house? Should they be grounded in life from going to the county fair or movies? See? Ridiculous.

As for making donations to causes, they have every much the right to make a five dollar donation to a cause as anyone. And if the SSD funds is really that much of a sore spot, consider this: People on SSD are actually allowed to hold a JOB! Yep, there is a limitation of hours and pay amount before we start losing benefits, but it is allowed for us to work. That means we are allowed to make some of our own money we can do what we please with.

Now let's get to the idea, from a quote I saw, that suggested that disabled people are not worthy of being advocates. Well why not? Let me give you a special word for this attitude; DISCRIMINATION. And just what should disabled people do? Sit at home and give up on life? Stare out the window in depression? Or would it be better if they actually do something? And who knows what we live with more than us? Who better to stand up for my rights than me? Who better to stand up for your rights than you?

I'm doing something, with my time and my life. I'm trying to better myself in spite of my disabilities. I should think that's commendable, not the other way around. Of course I know why this comment was made at me, it's because I decided people should be informed on a situation, but that's not what this blog is about. It's specifically about the idea that being disabled makes you unworthy of being an advocate.

And, if the person who says that claims to be an advocate, are they still and advocate? NO. But this person was hidden behind would could have been a false name, so I don't know who they are. But the comments were on another blog that claims to advocate (words will get switched there so I use the term loosely).

So, to recap, because I'm on SSD, I shouldn't write my blogs and educate on living with autism. I shouldn't stand up for others. I shouldn't help families find resources like I have. I shouldn't give any advice on anything. For that matter, I shouldn't spend money on a cup of coffee. I shouldn't have any entertainment in my life either. I should just sit in a room and stare at the walls. I'm being sarcastic, but you get the idea. That's discriminatory and I won't stand for it. Neither should you. Keep living people! Disability is not the end.

Friday, August 27, 2010

Autism and Loss of Identity

This is from personal experience. I cannot speak for everyone, but since it happened to me, it's reasonable to think it happens to others.

People with autism are typically very sensitive and can be very fragile. Certain sudden changes in life or environment can be very traumatic. They can result in psychological damage and be very hard to come back from or heal through. Very hard to "let go" of. Damages include PTSD (post traumatic stress disorder), depression and even loss of identity.

Loss of identity is a loss of self and self definition. When I was forced to walk away from a career I loved, it tore away an integral part of me. That career, for all purposes, was "me". Worse, it was a discrimination case, and before I left I was hounded, harassed, degraded, and devalued. My work was made worthless. Imagine having to make a dramatic choice. You can have your hand cut off, or have it beaten to a pulp with a meat tenderizer and then cut off. Your legal rights say you don't have to make that choice. But if you don't, the choice will be made for you. You have no power. That is what it feels like.

And this happens to people all the time, I recognize that. I happens to neurotypical people who've worked their jobs for 20 plus years. That can cause loss of identity too. The point I want you to know is that for someone with autism who depends on things in their life being so controlled and predictable, it's much easier to cross that threshold. It may not take something a neurotypical person would consider life altering at all. That's because perspectives and perceptions are different.

So how did my autism have that affect for my loss of identity? As you may know, autistics often have a special interest that they get engrossed in and stuck on. They may develop this into a special skill. I was tested at a Vocational Rehabilitation office for my work attributes. I've mentioned this before. Anyhow, I made exceptional scores in writing/journalism and protection/law enforcement.

These were already true interests of mine for years. I had worked for security companies and served with a Military Police Unit. I had always, since my youth, wanted to be a detective. When I became an Animal control officer, I actually achieved that to a degree. I investigated offenses involving animals. I was already a trivia nut on animals anyway. So it really was perfect for me. It was so much more than just my source of income.

When something is that much a part of someone, it's very traumatizing to rip it away. The same could be said for an autistic who's life is comic books. If they are that much a part of his life and he's that deeply involved, a fire burning them all could cause a loss of identity. What he knew that he related to himself is gone.

So I think that an autistic person may be at higher risk for such trauma and it may be necessary to understand that. Can we come back from it? Sure, depending on the person. But not everyone comes back at the same pace or to the same degree.

There are kids at risk right now in the school systems. The stories of those bullied even by their teachers. You've seen them in the newspapers. Psychological and sociological damage at that age can shape them forever. You may as well build them high up on a pedestal and then push them off. This is why there needs to be more education, awareness, and understanding. This is why I write.

Thursday, August 26, 2010

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.

Wednesday, August 25, 2010

Autism and phobias

Spider in a web
A phobia is an irrational fear of a specific "thing" or group of "things". For example, arachnophobia is an irrational fear of spiders. A person with this fear, upon seeing a spider, may go into hysterics or run from the room until the spider is removed.

High sensitivities in autism can trigger phobias so far as I have read. It makes sense. And currently my son is having trouble in this area. He is already skittish around animals. If they move towards him, especially before he feels absolutely ready, he will run away or at least move away a few feet. He is the very most afraid of dogs, bees and spiders. This year, with prime bug season going strong, I have seen an amplification of this.

I know that having something buzzing around my face drives my senses crazy. I can't help but do everything I can to get it away from me. So I understand how that must be sending him into a tizzy. Fear of being hurt plays a large role as well as his need for things around him to be predictable. Animals, without a great deal of experience, are not predictable.

We've had two occassions of screaming hysterics with climbing me like a tree in order to escape in just the last 7 days. One was with a small dog that was behind a tree and surprised us. But it was friendly and no one was hurt. The lady who owned it felt terrible. And the other was this morning with a bee outside.

I feel awful about how he must be feeling, but what can I do other than try to coach and comfort? Whenever we meet a nice dog, we try to meet it and get him a positive experience. He wants to, but is afraid. He has had two very bad experiences with small dogs that play into this. Teaching him how to deal with bees is a little harder. Heck, I don't like them myself.

All of this is making it hard for him to enjoy going out to play. The parks are full of flying bugs of all sorts. Dragonflies have been out in clouds over the beaches. Amazing to see actually. But you can't tell him they won't do anything to him. They fly around our heads in that unpredictable fashion and it freaks him out. Even large flies right now, that are hard to discern from bees will get this reaction. That's just how deep this goes.

I just hope I can help him get over this phase and to feeling more confident around animals. No one likes to see their child terrified. How about you? Is your child on the spectrum dealing with phobias?

Tuesday, August 24, 2010

Autism and the workplace

You know, in a way, I wish I knew about my Asperger's before what happened in my Animal Control career. The education of it may have saved a great deal from occurring. But my diagnosis was in process. No one knew. I didn't know. What made that worse was it meant I didn't know myself.

One of the most important things to know about autism is that it affects how we react and interact with the world around us. There are some things we see in a strict black and white and context gets lost. It can make misunderstandings easy, too easy. Same for frustrations.

If you are going to hire someone with autism, you should know their "quirks" and get to know them personally at least a little bit. Try to see their manner of communication and always be as specific as you can. That's not to say that people with autism cannot follow directions. But once some of us get an attention to detail we can be very rigid with it. That could be useful to an employer if you think about it.

In a way, companies could do well to learn about autism as much as our educational system. After all, our children on the spectrum today could be the workers of tomorrow. No, not all of them, but there are people with autism who have jobs. Since the numbers of children diagnosed has increased, it stands to reason that some of them will move on from school to college or to jobs.

Do people with autism require accomadations on the job to help them reasonably perform that job? Some will, some won't. A level of understanding and acceptance will go far.

If a person is unsure what they can do or if they can work, they can be tested at their local Vocational Rehabilitation center. The tests they do will tell you what areas of work you are most attuned to. Amazing test, I took it myself. I was found to be geared toward journalistic/writing and protection jobs. Protection jobs meaning things like security or law enforcement. Interesting how I've done both before I was ever tested. See what equivalent is near you if you don't have a Vocational Rehab office.

So high functioning persons with autism can enter the workforce with proper support. Just one more way we can lead functional lives.

Sunday, August 8, 2010

Autism checklist for your child in school

So here we are at a new school year. This means new routines and people are coming into your child's life. Not only should you be preparing and discussing with your child, these new events and changes, but you should be doing things to make sure that his or her education team is all on the same page.

One way of doing this is to make a personalized check list for your child and all their quirks or behaviors. It's kind of like a list of forewarning and notice of various behaviors that anyone who works with your child are going to see.

The idea is to help others not be so surprised when your child with autism or any other disorder does something out of the ordinary.

Things to list:

-reactions to sensory, students, frustrations, and any sudden changes.

-behaviors of any kind that are habitual to your child and when they might come about.

-how long it might take to get into school routine

-how to handle outbursts and redirect your child in ways that you have seen work the best.

I'm sure with this list you can see the possibilities of what you can point out to help your child's educational team. And that's what they need to be along with you, a team. This is a short blog, but I think many of you will find it quite helpful.

A couple of tips in writing this list.

-write it like a "list" as I've done with the little dash marks here. It's easier to read than a giant block of paragraph text.

-check spelling and use your word processor. Avoid hand writing it if you can.

-be sure to request that a copy of the list is given to everyone who will be working with your child.