Just sticking my toe in the water

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I just stopped in to say hi since I finally got around to finding a community where I can discuss my condition with people who know what it's like. I haven't been diagnosed with Aspergers yet but I know I have it and have passed it on to all 3 of my daughters. After 2 years of actively looking I finally found someone qualified to even make the diagnosis. I will be seeing her for the first time next Tuesday and my youngest daughter has an appointment a week later. If not for stumbling across an article about neuropsychology a couple months ago I suspect I would still be looking.

Mostly I just wanted to get an initial post under my belt as a way to make participating in the community a little less scary when I actually have something to say.

G'day Vurbal
Welcome to Wrong Planet, I'm new myself but find people friendly enough here.
How did you find out you have an autistic spectrum issue?

considering that most peoples toes are not extremely sensitive to temperature, i think that water temperature that may seem tolerable to a toe, may seize a torso in a vice like grip of muscular seizure due to rapid hypothermia.

however, hello.

I'll warn you now most people are sorry when they ask me such an open ended question, but I'll try to be as brief as possible. You might want to go to the bathroom and get a drink before you read it.

It actually took me about 40 years (I just turned 42) and I probably still wouldn't have figured it out if not for my youngest child. I was fortunate to inherit enough intelligence (I actually prefer to think of it as simply creativity but that's a different topic I could write volumes about) which allowed me to do what a lot of Aspies do and effectively teach myself to work around most of my limitations. I still ended up dropping out of high school because of my inability to stay on task or even do the most routine of schoolwork, but nobody had the slightest idea what the issue was.

In my late teens and early 20s I survived largely by a number of lucky breaks. I was practically incapable of even walking into a business and even asking for a job application so I had only been employed for less than 3 months by time I was 18. But I had a very good friend who had moved from our home town to Des Moines (I live in Iowa) who gave me the kind of kick in the ass I suspect most of us need from our good friends occasionally. He was in town and asked if I wanted to come visit for the weekend. As we were making the 50 mile drive to Des Moines he decided to offer me a place to stay so I could look for a job and get on my feet.

For the next several years I worked a variety of menial jobs, usually for minimum wage, until I ended up in a position where I worked as part of a team instead of just another faceless body. I would have quit that job too but when it became clear they were going out of business soon I realized I could turn that to my advantage and get a second chance to go to college. I got an IT degree and figured I had turned things around, but actually the only difference was what I got paid for the jobs I couldn't keep longer than a year.

By that time I was on my second marriage and had a son and 3 daughters. My oldest daughter, from my first marriage, has thankfully managed to overcome most of the limitations of Aspergers while making the most of the unique abilities it provides. She can do almost all the things I can't. She still understands exactly what I'm talking about when I describe my condition but she has learned to be at least outgoing enough to function socially in every day situations. She is also dedicated to her school work in a way I could never be. I suspect some of that is the result of having to be more independent than most kids since her mother and I split up about the time she turned 1.

Years before she managed that transformation, when she was still in elementary school without a single friend, my second daughter was born and for a long time I thought she had avoided my as of then unexplained problems entirely. She seemed outgoing, she made friends everywhere she went, and except for her exceptional intelligence seemed pretty much like all the other kids in school with her. As I learned about the time she got to middle school that's not the case. Her problems aren't as severe as mine in most ways but over the years they have become a lot more obvious.

My son missed out on almost all my problems for reasons I'm sure of (like I'm sure about almost everything) but couldn't positively prove. My youngest daughter, though, is a completely different story. She has all my worst problems and to a more severe degree than me. She has a brilliant analytical mind but is so limited by her rigid thinking that I'm afraid she won't be able to ever be self sufficient.

By the time her problems had escalated to the point where I had dedicated to finding a solution I had quit my last job outside the home a year earlier and was working as a writer for a website making barely enough money to contribute just enough to help the family stay afloat. As I am prone to do I frequently got sidetracked from my work and went off on tangents chasing links from one article and subject to another. One of those tangents led me to seriously look at Autism.

At the time I knew practically nothing about ASD. The closest I had ever gotten was what I learned from a Canadian social worker on a forum I frequented who had talked extensively about his experiences suffering from Nonverbal Learning Disorder. Initially I had wondered if that wasn't my problem because of some significant similarities to my experiences but ultimately ruled it out because of the equally significant differences. Autism, on the other hand, just felt like it might be what I had been looking for all my life. I still wasn't sure about me but I gradually became convinced that was my daughter's problem.

Now keep in mind I have the typical obsession with patterns and systems. At this point in my life that's mostly an advantage but I'm also keenly aware that when I'm not right about something I'm usually spectacularly wrong. The older I get, the less often I'm wrong about things, not because I'm that infallible but because I have more experience teaching myself and a better grasp of what I don't know. But I wasn't 100% sure so we turned to my daughter's school (where my wife worked as the office manager) to help us figure out where to start.

Their testing was, predictably, almost useless. Next we turned to a counselor at the school who was provided, free of charge, by a local company that offers a variety of children's services in the community ranging from her job to therapists and testing in a clinical setting to a group home for kids with severe behavioral issues. She met with Cassandra once and recommended we take her to the office for some general testing. At this point her issues were fairly muted at school. It would take her most of the school year to get comfortable enough to have outbursts like she was already having at home and the only real homework was studying spelling words.

She was tested for a total of about 3-4 hours over a period of 2 days by someone who had never met her before. The only actual diagnosis was anxiety and depression but we were also told that she was "borderline PDD NOS." By this time I knew enough about ASD that I saw this as confirmation of my own opinion but by this point I had decided nobody was going to actually listen to me when I told them what it was and I would basically have to play the system and try to point them in the right direction in the hope they would find their way to what was an obvious conclusion to me.

She got a fantastic nurse practitioner for a therapist (I'm probably biased since my Mom was a nurse so I tend to trust them more) who focused primarily on therapy and agreed with Cassandra's mom and I that medication should be a last resort. Eventually we tried some anti-anxiety meds which helped for a while but ultimately failed completely. At the same time my life was completely falling apart. I couldn't manage to even start working most days and to make matters worse I couldn't even talk honestly to my wife about what was going on and let her think I was still plodding along normally.

To make a long story short (I know, too late), months of me avoiding my problems in greater and more dramatic fashion as they piled up combined with not being able to force myself to even make a simple phone call to work with the mortgage company despite their complete willingness and honest effort, we lost our house and ended up renting from a woman who was also waiting for her house to be foreclosed on. That was a big wakeup call that I had to do something but it wasn't until I lost control one day and threw a remote control across the room, accidentally grazing my daughter's face (hard enough to leave a mark though) that I finally ended up meeting somebody who understood what was going on.

There was an investigation by Child Protective Services which ended up with the investigator concluding it was an accident but when she found out about our situation she said she could help by getting us in touch with a social worker at no charge. If not for that social worker I would not have reached this point. She talked to my wife and I for less than 15 minutes before she said she was just about positive I had some form of high functioning ASD. It was the first time anybody had ever even talked about it without me bringing it up first. She told me she didn't have the experience to even diagnose it herself but she referred me to a psychologist she thought might.

Actually he didn't. He ignored her notes entirely and all my attempts to even discuss Autism. He wanted to treat me for anxiety and was sure that I was just looking for a way to get on SSI, even when I explained that I don't want that at all. Needless to say the day he told me that was the last time I saw him. But our old social worker had taken a job at a local clinic where my daughter happened to already be seeing someone and she set me up with a psychologist there. This time I didn't get any runaround or BS but she also doesn't know enough to even consider diagnosing me. She did, however, take the time to find a couple possibilities for who might be able to.

One of those names I had run across previously in one of my numerous web searches. She is, as far as I can tell, the only neuropsychologist in town. She also doesn't have a receptionist so it took my wife more than a month to actually get an appointment made. Fortunately she also spent an hour and a half basically doing all the pre-examination background work and just based on my wife's description and recounting of numerous specifics she was pretty sure both my daughter and I have Aspergers.

By the same token I will probably not find it any easier to enter a conversation, let alone initiate a new one, simply because I've worked up the nerve to do so once. Perhaps the metaphor is completely fitting.

Welkome to WP

Mick

Welcome and thank you for your detailed background. It was heartbreaking to read. I'm so glad you found the answer after so long and so much pain.

Hey and welcome

Thank you for the sentiment, but you know what? I started out feeling pretty sorry for myself after decades of struggling. I probably do to some extent but mostly I'm angry and the more I educate myself about the sad state of autism research and almost complete ambivalence by the medical/scientific establishment the angrier I get.

They know for a fact that this is something which affects far more people than anyone could have guessed 20 years ago. They also know that there are tens of millions of us struggling with these problems who lack both the insight about what's wrong with us and the ability to negotiate the maze of ignorance and bureaucracy standing between us and even a basic diagnosis. Almost everything that led me to this point is the result of unbelievably good luck. Even assuming I had the motivation to find my own answers and capability and resources to do my own research I would not even have been capable of making the first phone call to arrange my testing and I certainly wouldn't have been able to keep forcing myself to make it repeatedly until I got through.

While I would never suggest someone who suffers from any ASD-type condition is mentally comparable to a child, when it comes to making the kind of systemic institutional changes required to address our own needs an awfully large percentage of us are no more capable than one. It's also completely different than numerous other medical and psychological issues where it's easy for everyone around you to comprehend what's going on. Even now my wife can't really comprehend what I'm going through no matter how hard she tries and most of what she does understand is mostly the result of her brief conversation with the neuropsychologist I'm going to see.

When some lazy collegiate researcher takes grant money to do the kind of laughable study that permeates autism research, even today, he isn't just not helping. He's actively interfering with the tiny number of dedicated people who are doing the work which will eventually make a real difference in our lives. He's not just taking advantage of some ignorant bunch of bureaucrats. He's taking advantage of me, and even worse he's taking advantage of a lot more people who are far worse off than me and far less capable of helping themselves.

When those in the academic community fail to educate students who will eventually be the cornerstones of our support system or push for those who will be handed responsibility for us as educators to get even the most basic introduction to what every primary and secondary school teacher is almost guaranteed to come face to face with eventually they are turning their back on their basic responsibility to us specifically and society as a whole. What they, and established professionals like the obnoxious, self absorbed, self important psychologist I saw for a while could probably accomplish for us in 5 years or less it may very well take us 5 times as long to manage with the help of the small minority who are already doing what they can.

All of that, and all the other crap I didn't bother to mention has shown me that people like me who are fortunate enough to not only to be intimately familiar with the problem but also the rare ability to communicate far more effectively than the vast majority of the population, autistic or otherwise, have a responsibility of our own. We, and by we I mean I, need to deliver the message both for ourselves and all the others who can't break through the communication barrier or simply don't know what to say.

Having been intimately involved in the efforts that killed the SOPA and PIPA bills in Congress early this year I've seen what the democratizing force which is the Internet empowers regular people to do. We can, and really have to, not just fight for what we need but also take on the entrenched culture of ignorance, arrogance, laziness, and flat out incompetence which keeps us marginalized and underserved in almost every aspect of our lives. I may be just one person but we are tens of millions of people including both those who personally experience this family of conditions and everyone from parents, spouses, and children to teachers, clinicians, vocational rehab counselors, and numerous other individuals who are forced to work around all that incompetence and irresponsibility.

I have a lot of things I need to take care of in my own life first, but it will probably take that much time (or more) to find my place in this growing movement. What I do already know is this. We, perhaps more than almost any other group (in already democratic countries anyway) have been given a voice we never had before in the figurative sense. On top of that for many people the same is literally true. When it comes to a war of facts and ideas, particularly on a battleground where technology is the ultimate equalizing force, I don't know that you could ask for a more formidable force than us. Anyone who chooses to dismiss that (or us) and in the process stand in the way of our efforts to begin fixing an entire web of horribly broken institutions may not be as well shielded by the traditional fortifications of academic standing, bureaucratic procedure, or political allegiance as he thinks.