Letter from the Editor - APOV on Autism

Another Point of View
by Candes Meisenheimer

When we first found out that my husband had Asperger’s Syndrome I hunted for resources that could help me help him. I did a lot of research and found some great websites, but all of them were dedicated to fact and the reporting of news.

Don’t get me wrong; I’m glad those things were out there. They helped me understand why my husband was the way he was and what Asperger’s was. To this day they keep me informed of changes, breakthroughs, and various other information that, as the wife and mother of people on the Spectrum, I need to know.

But what I really wanted see, what I needed most, especially at that time, was a site or other periodical that could help me understand what I could do; what I had to do. The sites told me to keep guard against over-stimulation… but they didn’t tell me how. The few sites that offered tips were aimed at the caring of children only and even then they offered very few options or points of view. What I was looking for was practical experience from spouses and parent’s who’d gone before me, who’d already been through the trials and triumphs I was experiencing. I wanted to see advice, first hand, on what to do during the holidays, birthdays, and other situations that seemed hard for my husband to get through. I wanted to see sites that told me what to expect from schools and other service providers in regards to my lower-functioning autistic daughter.

I found tons of information regarding the facts, my rights, and what books to buy, but very few of them helped me figure out what to actually do in day-to-day life. They told me what diets to try, and explained them thoroughly, but didn’t share recipes. They told me to minimize this and that, but failed to tell me how. They told what therapies were available, but not where to find them or how much to expect to pay for them.

I did, eventually, find this help in the form of online message boards and group support meetings, some of which I had to start myself. But those presented problems within themselves.

Meetings were hard to arrange, and when we could get them all planned out very few people actually came. I learned the hard way that I was very blessed in the supports I had at home from other members of my family. Most of the people who needed the help of the meetings couldn’t attend because of the unique problems they faced in finding adequate childcare.

Childcare wasn’t a problem for message boards because the person interested could go online from the comfort of their own home without having to worry about being somewhere at a specific time. But the information was slow in coming and always depended on who was available to answer questions or give advice. Most of the time the people who answered were just a new to dealing with the Spectrum and as lost as the rest of us were.

Then there was the redundant information problem. As new members came onto the board the same questions were asked over and over again. This couldn’t be avoided since each new person was just as lost as each of us had been when we first came. But the older members got tired of answering the same questions repeatedly and some of the newer members would get lost in the shuffle. Some boards attempted to solve this problem by creating small websites that served their board community. But more often than not sites weren’t kept up and the community eventually folded or the website was taken down.

Then there was the ‘bias’ that each board or site leaned toward. One was all for finding the cure while another was totally against it. One would push the GF/CF diet while others pushed for changes in immunizations. One community taught that ABA was the only way to go while another insisted it was Floortime. Confusion reigned everywhere I looked.

Where’s the in-between? Where’s the average Joe? I couldn’t find anyplace that spoke to the masses or posted its daily advice and practical living information in a friendly no-PhD-required format. I was sick of buying books just to help me learn to understand and make sense of what I was reading online. I wanted to hear from what they called the ‘been there done that crowd’ from not one, but ALL of the different sub-cultures and communities that had arisen within the greater Autism Spectrum community.

As it turned out, I wasn’t the only one. Early in my ‘career’ as an ASD-cyber-surfer I met several people who were looking for the same things I was.

It started several years ago as one of those “Wouldn’t it be nice if….” type conversations. “Geez, we should create our own site.” “Man, if I could only do my own site…” “If we had our own site we could…”

After a few years those conversations turned into “We really need to do our own site…” “When we have our own site we can…” and “What we need to put on our site is…”

Then, earlier this year ‘we’ made the decision to just go ahead and do it. It came at a bad time for ‘us’, since all of ‘us’ had other, incredibly important issues to deal with in our daily lives, but we came to the conclusion that this was always going to be the situation. It was always going to be a bad time to start the site and there was never going to be a ‘right time’. So we just did it. We contacted people from all over the continent that we’d been talking to about it over the years and got everyone together… more or less.

We had to make some hard decisions, as several of us were going through financial crisis and couldn’t afford to donate the time to such a venture. But all money aside, we decided that it was simply time. There were always going to be problems coming up that we could use as excuses to not build our site or do this one particular avocation. This was something that needed to be done. We’d been talking about it for years, and when all was said and done, we weren’t getting any younger.

So we created APOV on Autism. This is the website that we wish had been available to us when we had first started dealing with the Autism Spectrum. The site where the average person can go and read about practical tips and lessons learned the hard way. Where we can find out more than the ‘whys’, we can start learning about the ‘hows’. A place to look up recipes and print out check lists. A place to find out what others thought of a certain book before wasting out time and limited money on it. A place where we can get more than the facts.

A place where we can get another point of view.

Candes Meisenheimer
Editor in Chief
APOV on Autism