Tired of the runaround

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First off, I am obliged to say, “Hello” as this is my first post on Wrong Planet.

I’ve been lurking since October of last year, and this site has been a great source of information. For a while now, I’ve been meaning to introduce myself and ask for some help. After a new development today, I decided it was time.

I’ll try to keep my story short:

I’ve always known that I’m different. I’ve always felt like I’m on the outside of humanity, looking in. The only thing I knew about Autism came from media portrayals and 20/20 specials about classic Autism. I had heard the word “Asperger’s” but didn’t know what it was, or that it was part of the Autism spectrum. Still, I would occasionally wonder if it was possible to be “a little bit Autistic”.

In October of last year, I happened to read an MSN article about a man with Asperger’s. Several things in the article reminded me of myself. I immediately began researching Asperger’s. All the clinical definitions I found seemed rather vague, or at least they lacked any context that I could use to compare to my own experience. When I discovered WP, however, I could read about the experience of other individuals. It was like reading my own life story over and over again.

Social difficulties, Sensory issues, Repetitive behavior… You’ve heard it all before, so I’ll just skip to my present situation…

I’m not comfortable or satisfied with a Self-Diagnosis, so I have made several attempts to pursue an official assessment. My main problem is that I am unemployed (going on 3 years). I have no insurance, and almost no income to speak of.

I first contacted a free Autism program through the University of North Carolina that offers assessment and support for adults with Asperger’s. Unfortunately, I don’t qualify because I’m a resident of South Carolina. They were as helpful as can be expected. They told me that there was no equivalent program in South Carolina, and suggested that I contact Autism Speaks, or the Autism Society of South Carolina to see if they could point me in the right direction.

Autism Speaks was not helpful, and The Autism society of SC never responded to my inquiry.

I decided to try the County Mental Health Department. They informed me that they only directly treated certain types of mental illness, but they would refer anyone else to the proper agency. I realized that they would send me somewhere else, but I believed that they would at least point me in the right direction.

I spent almost two hours with the lady in the initial interview. I brought up Asperger’s early on, and we talked a little about Social Anxiety, and my inability to focus on anything outside my special interest. Otherwise all the questions were things like, “do you hear voices”. I realized that they were looking for specific things, but at that point I just wanted them to point me in the right direction. AT the end of the interview, she said several things that made me realize that she either wasn’t listening, or didn’t understand what I was saying. These included “You just need to get out more” and something to the effect of, “You don’t have any depression, you’re just down because you’ve been out of work for so long.” I admit that unemployment has contributed to some things, but I really felt like all my concerns were trivialized. She said she would present my case and get back to me.

I finally heard back from her today. She said that she thinks I just have social anxiety, but she will refer me to Vocational Rehab.

I also did some more digging on the South Carolina Department of Disabilities and Special Needs’ website. I found a number to call “if you or a family member thinks you have autism.”

I guess I just need advice on where to go from here. While I technically made progress today, I’m growing tired of getting bounced around. Reaching out is hard enough on its own.

I think this post may have devolved from its original purpose. Let me just end with some questions:

Has anyone had any experience with either of these agencies, or something similar?

Any advice on which one would be better?

Do I have a third Option?

Thanks in advance for any assistance, and sorry if I got a little long-winded.

Never ever say sorry for being long-winded again. You have the right to be here and write say paint or do whatever you need to do for however long suits you.

Don't be sorry.

The helping professions, in any country, are crappy at best. I'll keep my fingers crossed that you will have the stamina to continue until you get exactly what you need.

I find there is little to nothing for getting an adult diagnosis for AS. Especially if you have limited or no money.

Sadly, a lot of "therapists" can be that way....hear but not "listen" to you.

Welcome to WP! Personally I think this may be one of the best places for you.

First let me say that I LOVE your avatar. It's awesome, Okay, that has nothing to do with your situation but I just had to tell you.

I only found out a year and a half ago that I am Aspie. I am over 40. I have a friend who works with Autistic kids in our school system and he is extremely knowledgeable about the subject and he told me that after observing me almost 5 days a week for about 8 months. He said it was obvious the first time he saw me but he wanted to give it time so he did. He also told me not to bother with trying to get officially diagnosed. I am high functioning enough that none of the programs would really do me much good anyway and the whole process is stressful and expensive and it's not going to change anything. A lot of the programs are geared towards children or low functioning Autists. If you are an adult and you happen to be high functioning, it is very difficult to get help and you might as well not even bother trying. Especially if you have spent the last 4 decades learning to cope and deal with life the best you can.

One of the problems with those of us in this situation is that we had to learn to make due and make life work and "fit in." When we were little, Autism was not really heard of or common like it is now. I know that many of my Aspie or Misophonic behaviors, I have that too, were treated as behavior issues that required discipline. No one would have guessed or known or diagnosed me as a Misphonic Aspie but rather as a kid who needed a spanking. So I had to learn to look and act normal. So if I try to get help they will most likely not even believe that I am Aspie or they will most likely not have help that would be helpful for me. And I don't understand why she asked you if you hear voices. I don't.

But I have found that WP has given me great help because I have been able to understand why I am like I am. So I say, don't stress yourself with trying to get an official diagnosis. You know yourself and if you can relate to stuff here let that be a way to help you. That's what I'm doing.

Thanks everyone, just being able to come here and see that I’m not the only one has gotten me through some of my more stressful times.

I’m used to people not quite understanding what I’m saying. Or downplaying what I say, just because I’m not prone to exaggeration. I’ve lived with that all my life. I just thought that someone whose job it is to listen might do a better job of it…

To clarify: She asked me about hearing voices (and lots of other things) because it was pretty much a generic screening for all types of mental illness. She had a questionnaire on her computer, and just went through the questions one by one.

Skibum, I’m glad you like the avatar. I started using it a few months ago when half my friends were changing their Facebook profile pictures to pink equal signs, and the other half were using pink crosses… But that’s probably a discussion for another forum…

I see your point, and I agree to a certain extent. I’m 35 and I have a lot of practice trying to blend in. I don’t think there’s much they can teach me about that. But, that’s not really my reason for seeking a diagnosis.

Reason number one is for my own peace of mind. Some days, I’m absolutely, 100% convinced that I’m an Aspie, and that this is the explanation for so many things in my life. Other days, I wonder if I’m just deluding myself. I have a tendency to over-analyze my own actions, thoughts, and motivations. It would be nice to have an objective professional make a determination.

Number two is to help me share this information with my friends and family. They all accept me as I am, with the quirks that they see. But they really have no idea how much I hide, or how stressful and exhausting it is. I would really like to just be myself. I believe most would be understanding and accommodating, but based on the few I have mentioned AS to; it doesn’t look like they will take a self-diagnosis very seriously. I also have difficulty explaining it all. As I said before, nobody ever really understands what I’m saying. It seems like it would be so much easier to say: “I’ve been diagnosed with Asperger’s, just Google it.”

Number three is to hopefully open some avenue of assistance. Either something like Vocational Rehab, or possibly Financial aid to go back to school. I really messed up in college, and lost all my financial aid. Looking back, I realize that I had issues affecting me that I didn’t understand, and didn’t know how to deal with. My hope is that a diagnosis would help me explain my past issues, and help me get assistance to finish my education.

Mostly, I just need to know. Since the ball is already rolling, I guess I’m going to take the referral to Vocational Rehab. The lady said she would set up the appointment for me if I wanted. That saves me at least a week of psyching myself up to make another blind phone call…