Wednesday, December 19, 2012

Asperger's and Autism

I decided to post this on this blog not so much because it is relevant to the title of my blog, as it is because it is part of my journey.

You see, last year, the church I have been part of for three years sent me for testing because of the pursuit of a dear woman who recently moved.

It has been both a blessing and a curse for me, though.

Let me explain. It was a blessing because after all that time, we finally had a name for why I was struggling so much in relationships with others.

But it was a curse because some people, including those who were on a care team assigned to me used it more often than not as an excuse to exclude me from the activities that members can do as well as activities that both members and non-members can do.

For the past year and a half, I have persistently fought against the church because of the exclusions. To no avail. They handed me a document that basically said I would be permanently excluded from the very activity that I fought with them about the most, the one non-members are allowed to do.

It was not fair. Not to me and not to anyone else who looked at that document. The document was deemed as a form of bullying, abuse, discrimination, etc. It had no biblical basis, no Book of Church Order (BCO) basis and was even deemed inappropriate and immoral.

I fought for three months to get a meeting to discuss the issues with the document. And they refused. I tried to get the permanent exclusions section removed and expressed willingness to sign agreement IF they removed that one section. They refused.

I cannot tell you how many times I was told by the team that I was not being allowed to do activities because of the autism. "Because of the autism, you lack empathy, so we cannot risk letting you do that activity because you might unintentionally and unknowingly hurt somebody." "Because of the autism, you cannot do fill-in-the-blank because...."

Then I found out they talked to other churches and to other people in the church. I don't know what was said, but that document showed me the results of what was said. I am not wanted. In that church.

And it hurts.

So because the negotiations failed, I am leaving. That church. For a season. I don't know exactly where. And I don't know exactly how long. But I have to find a church that is more accepting of adults who have special needs.

And only one person from that church will know where I end up. For now. Because I don't want people to be checking in asking me if I found a new church yet.

It hurts too much right now.

It breaks my heart that the church presently cannot practice Matthew 25 and the least of these by including people, including adults, with special needs.

But see, this is also where I find God to be ironic. For this very issue that is causing the separation right now will also be the very issue that reunites me with that church when it finally has a change in its heart song and finally accepts and includes people, including adults, with special needs.

As to my church friends, please, I would be honored to stay in touch with you via Facebook as I do literally journey through theology now.

Because in this leg of the journey, I literally am learning theology in an experiential way, and I am scared!!

Why do I say that? Because Friday, the United States had a horrific incident occur. And I mean horrific. Because of my own lack of complete understanding and preferred detachment due to locality, I am not going to rehash what we already know.

What I will do though is to speak my mind about something that the media spun relentlessly over the weekend and put those misconceptions out to pasture.

Chances are if you listened to any news over the weekend, you may have heard that that sick man that did that heinous act potentially had Asperger's. But here's the thing. He may have had Asperger's, but he also had other problems.

However, for the second time since I got diagnosed last December, a massacre was linked to Asperger's. the similarities to both people were this: they planned what they did. Their acts were very calculated and very meticulous in nature.

Over the weekend, it was stated that the guy who did that heinous act Friday morning lacked empathy and showed no emotion.

Retraction stories have been done, but the damage to the autistic community this past weekend was deep.

Here are two key points from statements this past weekend that you need to know:

1. Autism is not linked to PLANNED violence.

2. Autistics do have emotional empathy (feelings), but may be deficient in cognitive empathy (understanding what emotion they are seeing).

Now, let me tell you from personal experience what autism may look like:

1. It is a spectrum disorder, meaning that it presents differently in different people.

2. There is high functioning autism, typically referred to as Asperger's, and often based on the presence of verbal skills. I have never identified as Asperger's personally because I had speech delays, so I identify myself as HFA. HFA is based on intelligence as well as Asperger's. you also find more moderate and severe cases, which may be lower functioning. This is where you start to encounter things like an adult who is still not toilet trained. Often, this would be the end where an autistic would be nonverbal. However, there are HFAs who are nonverbal or who have verbal skills that are not quite as articulate as their "neurotypical" peers.

3. Autism is NOT a personality disorder or mental health issue. It, like ADHD, is a processing disorder.

4. Autistics are prone to meltdowns. These often occur when the individual feels overwhelmed or overstimulated or sensory overload. And it results when the person cannot communicate what the problem is. It may be more severe in nonverbals because they cannot communicate, whereas with verbals, it just takes a person knowing how to communicate with him/her. Meltdowns can be as simple as isolating oneself and crying, or they could be more physical in nature: head banging, hitting, kicking, pulling hair, biting, jumping off surfaces, throwing things, etc. But as violent in nature as these meltdowns can seem to someone who has never personally experienced someone with autism, it is not planned violence or even actual violence. And it is usually against themselves and not another person.

Warning: There are people who go too far though in the name of stopping people who would link the two together. I ran into one this past weekend when I witnessed a word attack on Facebook as a mother sought advice for her child. Lots of mothers do. But this one got attacked and accused of linking things. The other woman became unhinged. And she retaliated against me and others who were on both Facebook pages by banning us from her own.

There is something else I need to tell you. I attend ABA therapy sessions twice a month. I got connected through someone at that church. That was a positive thing. So twice a month, I have sessions in which I am learning about why I feel what I feel, how to identify what I feel, how to overcome what I feel or refocus. And two things I have learned are about perseverating and intent versus impact.

So, now you have that background, here's what happened. The woman attacked this mother on both Facebook pages, hers and another page. She got banned from the one, but then retaliated against anyone whom she thought disagreed with her.

I read the post where she became unhinged to my "neurotypical" mother. My mother confirmed as I had that the woman misunderstood the intended meaning of the post. I, as well as others, tried to explain that she misunderstood, and she retaliated against the fact that she got herself banned by banning me and others. But I want you to judge for yourself based on the nature of the posts:

On this page, the woman has made herself out to be the victim, called everyone else trolls, and claimed she is a victim of a witch hunt. She claims the other page on which she launched missiles and got banned from spreads hate. Her grammar is atrocious. Her posts no longer relevant to Asperger's. and her page will no longer be recommended to anyone who sees my particular therapist.

What makes me most angry about the page? Not just that banned me just for trying to tell her the truth that she misunderstood what the intent of the question was but that she then judged me without reading my comments and assumed I was some "NT mother abusing autism." Say what?!? I HAVE AUTISM. I was on her page for support and she overgeneralized and retaliated against being banned for attacking someone on another page by banning me and others! Wow!

BTW, her use of the following terms do not help her case: "trolls," "witch hunt," "gang bang."

And, I find the term "neurotypical" becoming increasingly derogatory because of her.

Here are some other things you need to know about autistics:

1. We are sticklers for the rules. So when I was presented that document by that church, I couldn't sign it because I couldn't agree to the permanent exclusions because I already know what I was told regarding the activity that non-members were allowed to attend and that is that the church could not restrict any member from an activity in which non-members can participate unless the member was under discipline. So because the church already broke that rule, I couldn't agree to let them continue breaking that rule by continuing to exclude me.

2. We are brutally honest. Don't ask us if we like your new haircut unless you are prepared for the potential hurt feelings.

But judge the AWA page for yourself by reading the comments on the post where she had launched the attack that got her banned:

Oh. Just so you know, it was in part my brutal honest that probably led to that document from that church. They said the exclusion was to protect me from what may be a dynamic situation or from failure and to protect others from my brutal honesty. Funny thing, if I remember correctly, we're ALL broken people in a broken world who need grace which gives more than one chance and we need to be in a church where we not only feel safe but loved and accepted and free to be honest with each other. So if you punish me for what I'm supposed to do, and you keep excluding me because you're afraid I'm going to mess up again, yet you never have me another chance to start with even though I have grown and developed over time, are you really exercising grace? Because I didn't see grace in that document. I saw legalism and judgment.

And that hurt.

All this to say, that I do understand where the misconceptions come from, but please do not judge all people in a group by the actions of one.

It is a lesson I must learn as well. We all have to learn it.

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