Thursday, May 1, 2014

So What Happens After Autism Awareness Month?

It is a new month. Which now means it is no longer autism awareness month. So now what? Do we all just forget that autism exists and that there are people, like me, who struggle with the challenges that autism presents? NO! Do you think Jesus only cared about the sick one month and then forgot about them? Why else do you think that the disciples recorded the majority of the three years of His ministry that we do know about? Not for any of us to forget. So do not forget. Take whatever you learned from it and apply it. Work toward developing intentional outreach to us, especially if you are a church leader or a church pastor. After all, if you are in a church leadership or church pastor position, then you, of all people, have a greater responsibility for outreach to them. Why? Because the majority of them are unchurched. They tried church but they got bullied, abused, asked to leave, thrown out, or excluded. Their hearts and their spirits were broken and crushed because of it. And they struggle so much already without the added pain that a church inflicted. We live with autism every minute of every hour of every day. We cannot forget it even when autism awareness month goes away until the next year. So we will not let you forget either. The scary thing that is happening this year is that one of the largest groups of diagnosed children are becoming adults who still have autism. Some of them are aging out of services and will get lost in the flow like me and many other adults with autism. Why? Because we have been forgotten by our communities, therapists, and churches. And that is sad. But now I am going to change focus for a minute and hit some highlights.

Since I have seen my mother get a confirmation of having autism just like I have, I believe that the cause of autism, just like ADHD, is genetic. My mother's observations stand that I displayed signs before I ever got my first vaccine. Some families have vaccinated all their children yet only have one child with autism. Some families have not vaccinated any of their children yet still have a child with autism. Some twin studies have followed both vaccinated and unvaccinated twins in which one child has autism while the other doesn't. If vaccines were the cause, then it seems like either all or none would have autism. And let us assume that each mother of each child with autism did the exact same prenatal care. Why is it that not every child who gets vaccinated has autism? It has to have a genetic link. In order for autism to be caused by vaccines, there cannot be any exceptions. Science is about facts, and the fact remains they have found NO direct cause-and-effect between autism and vaccines. Now, grant, the shots still containing mercury really need to be eliminated and a mercury-free version developed for everyone. It turns out that mercury is used as a preservative and in a person like myself who is sensitive or allergic to the preservative, they have to have alternatives. And they do for the flu shot otherwise I couldn't get it. These vaccines come in single use vials. As to MMR, they can break it down. Up until the year I was sent for a chicken pox booster that the health department didn't give me but instead gave me a combined MMR, I had separate MMR because my body couldn't handle combined vaccines apparently. But you see, if I had a child, I would rather have a child with autism than have a child end up dead or seriously deformed from an illness that could have prevented with a vaccine. Not to mention the fact that there are people like me who have immune deficiencies that could get sick and die because of an unvaccinated child. And please do not say it is for religious reasons. Where does the Bible prohibit vaccines (or birth control)? If the greatest part of Jesus' ministry was healing the sick and Luke was a doctor, then the Bible must support healthcare. 

Next topic. Autism Speaks. TACA (Talk About Curing Autism). Autism Society. I do not stand behind nor do I refuse to support any of the organizations out there, and I know these are just three. Here is why: 1. I support ANY organization that brings awareness about autism and offers resources of any kind to people who have autism and their parents or families or caregivers. 2. But I do not support any organization whose theme is "curing" autism. People complain that Autism Speaks is not letting people with autism speak. Here's the thing. Of all the people who have autism, not all of them can speak in the way that most people consider speaking. Some of them can type though. Do not let me forget this though: ALL people with autism have a voice. You just need to find the key to unlock it. And when you do, this whole new person opens up and blossoms before you. Let them! Do not do anything to damage them when they start blossoming or you will lose the full effect. Think of the person with autism as a rose. The rose has to unfold. Let it. But even though the accusation is that Autism Speaks doesn't let people with autism speak, the reality is that they do. As long as you are able to communicate to them on their page or send them e-mails or call them, they are giving you a voice. Stop being confrontational going into it if you want to effect change. As to curing autism. Please so help me, but autism does NOT need a cure! Will autism kill me like cancer? No. Is autism a disease like cancer? No. Stop trying to cure me of autism! Autism is a part of WHO I am. Just like asthma is a part of me. Autism lets me think outside the box so that I see things more exact and more concise and more colorful and more musical than others. The only thing needing a cure with regard to autism is the ignorance and the churches that bully and abuse and exclude us. They need cures. Not us. 

Moving on. Is it autistic or person with autism? It depends on the person. Me? I prefer autistic. So you should refer to me like this, "This is Susan. She has autism. She is autistic." I am autistic. When you refer to a person who plays music, do you call them a person who has musical gifts or a musician? When you refer to a person who paints, do you call them a person who has art skills or an artist or artistic? It is the same concept. I prefer to be called autistic because it is what I am. Also asthmatic. Diabetic refers to someone with diabetes. I am autistic. Please do not refer to me as a person who has or a person with autism because even though some people believe in "people first" language, I find it degrading and devaluing. It does not embrace who I am. And it is complicated. I prefer simple. 

Now. What does the future look like for people with autism? Based on my own experience of being late diagnosed, not good so far. Churches are not reaching out to us. Communities lack support for us. And therapy doesn't exist for us. Traditional Vocational Rehabilitation Services are not appropriate for us. Many job places don't want us. Not all of us can do college (I did and that is great, but had I known about the autism, would things have been different since there was not as much support then as there is now?). Not all of us can work. Not all of us can drive. Not all of us can support ourselves. Even the most high functioning of us cannot necessarily be fully independent. In communities where support exists, the chances of an autistic thriving are a lot better than in communities where there is little to no support. Those areas I mentioned. Things need to change in all of them for us to have a chance. And they need to start changing NOW. Don't wait saying that when the need arises, it will happen. The need is already there. Children with autism grow to be adults who still have autism. Don't wait. Act now.

Autism awareness will be my purpose every day that I am alive. It has to be. I live with it every day of my life. I will not let you forget. 

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