My Thoughts on the AutCom Conference this past weekend

All of the anticipation, preparation and perseveration has paid off! I got to present my speech this past weekend in Edmonton at the Autism National Committee (AutCom) conference and it went very well.

The whole weekend was an eyeopening experience for me as well as being a source of stress, both good and bad.

On Thursday night, I was up so late working on my powerpoint presentation that I didn't get any sleep. I worked from home on Friday and got more sleep in the afternoon. I was ready for the trip to Edmonton when I woke up. We drove up at around 5:00pm and stopped in Red Deer for supper.

Once we reached Edmonton, we found the hotel and checked in since no one was still up. (It was about 10:00pm) The rooms were amazing and the service was great. Some friends came to visit and brought me my favourite root beer. We had a good time and then we had to get to bed.

I got up the next morning, spent an hour getting ready (Shower, hair, make up, clothing, etc.) and then went downstairs to meet everyone.

I was introduced to one autistic lady and we hit it right off. She's a pretty neat person who comes from Colorado who meows if you mention cats and has a wonderful sense of humour.

Everything started late by at least an hour, so everything was kind of messed up for the day. I don't know what the delay was, but I think it might have been due to the room needing to be set up for the first part of the day.

The first event was like a play or skit done in pantomine to music and recorded messages from autistic people. In the background, they projected images that a few autistic people had painted. It was a show of the emotions and such that many of us feel with things like being taunted, dealing with being judged, relationships, etc. It was very moving and I almost cried at one point. Very well done! The performers were a couple that we would meet at the marriage panel later that afternoon.

After that, there was a keynote done by Estee Klar-Wolfond of TAAP (The Autism Acceptance Project), but I was unable to see it because I had to get everything set up for my speeech.

There were some technical difficulties with the projector not wanting to recognize my computer or the conference organixer's one, so we spent a frustrating half hour getting that to work. My speech had originally been scheduled for 1.5 hours and it had to be cut down to 1 hour. It would also be starting 45 minutes late. Thankfully, I have learned a lot about these things in Toastmasters and was able to figure out how I would shorten it. This meant I could not do the little experiment I wanted to at the beginning, though.

Finally, we got it all working andd about 30 people came to watch. Someone from AutCom videotaped the whole thing, which was good, because I forgot to tape it like I had planned! (My friend wanted to hear it, so I was going to tape it for him) I will be receiving a DVD of it sometime in the future.

The speech was remarkably easy to do and I did not get emotional. In fact, I found I was able to incpororate a lot of humour into it! For instance, I was talking about how my mother had sent me to therapy when I was a kid so I could learn how to play.

"Apparently, folks...there is a corporate standard to play that I did not get the memo on! Did I *miss* a meeting with the "play" thing or something?" Everyone got a good laugh.

Then I used my standard MMR vaccine one. "I did not get the MMR vaccine. Know why? Well, my mother heard that it *apparently* causes autism! What a shock that I turned out to be autistic anyway!"

I felt a little rushed toward the end and we didn't get as much time for Questions and Answers that I would have liked. I got asked lots of great questions by the audience. One fellow seemed to be taking over my speech by trying to answer my questions for me or keep rattling on while I was trying to get the next person to ask a question. That irked me something fierce! I finally just had to cut him short and point to the next person. We only had 15 minutes after all.

One person commented on how well I've done and how I don't look autistic. That could be why CNN never interviewed me...they likely didn't know I'm on the spectrum! (CNN was there interviewing people.) Another, who had seen my speech 4 years before, asked some questions about her son. I was really happy with the Q & A period and just wish we'd had more time!

My husband actually got up and told the audience that I certainly am autistic and when I have one of my attacks, there's no question to that fact! I just hide it so well 80 % of the time. He told about how I can't speak right after work and how I get when I'm overloaded.

After the speech was lunch and I found out how much I just don't seem to fit in with anyone, not even other autistics!

There was a group of very well known autistics, whom I converse with on usenet a lot, sitting at one table and I felt like I was not welcome to join them. A friend of mine who is not autistic seemed to fit in with them just fine and spent the whole conference with them. I ended up sitting with a couple of NT's who are fellow AutCom board members, so we had a nice chat and I was able to get caught up on what happened at the business meeting.

Perhaps I just needed to be introduced by someone. I had hoped my friend would introduce me, but she did not. I ended up trying to introduce myself which was really awkward.

My husband and I ate our lunch. He had the vegetarian option, which I was unable to eat since it was an oriental dish which had soy in it. I had a few potatoes and a yorkshire pudding. Hubby got food poisoning later that night while we were trying to get to our hotel in Wetaskiwin for my Victim Advocate training. (Some of the broccoli was bad)

During lunch, one of my other friends was the keynote speaker and talked about biomedical treatments, etc. I didn't agree with a lot of things, but I stayed to see the speech since she was making some good points. One autistic suddenly screamed very loud and dashed under the table. It startled many of us and there was a collective "jump" as people were startled. A few seconds later a lovely electonic British-accented female voice came from under the table: "I'm just a little overloaded. Sorry about that." Eventually, she came out from under the table and asked for someone to get her "out of the room right now". Someone tried, but ended up knocking over some glasses that were on the table behind. "I'd rather make a mess than listen to bad science" she said loudly. They left the room, with their entourage of about 5 or 6 other autistics in tow behind them. Oy...

Perhaps it's 4 years of Toastmasters that caused me to be a bit bothered by that. I would never, *ever* make that kind of commotion and storm out so loudly while someone is delivering a speech...even if I didn't agree with what was being said! Public speaking is a very difficult thing for most people to do. In fact, it is the number one fear for most people. For the record, I ended up quietly sneaking out of the room after a few minutes because I was just so confused as to what was being said at that point. I had missed most of the speech due to the distractions at the table behind me and could no longer process it. However, I made sure to be very quiet and discreet about it.

It was at that point that I finally got to meet Estee, whom I have been trying to strike a dialogue up with for the past two years. It was a short meeting and she didn't have a whole lot to say to me, so I left it at that. She had met the others the day before and was a lot friendlier to all of them. I would have gone up the day before but I had to work and so did my husband. (Getting paid takes priority, I'm afraid!) We still didn't get to strike up a dialogue, but may get the chance later on since she is a board member too.

Afterwards, my hubby and I went up to a room on the third floor of the hotel for the marriage breakout. My husband and I were one couple, while the two who had performed in the morning were the other couple. This was being videotaped, so I'll get to see that as well. This was such a great experience! The other couple and us seemed to hit it off nicely because we were properly introduced and the conversation was being facilitated by the host of the session. We talked about how we met, how AS affects our marriage, what strategies we use to communicate, etc. Looks like we're a pretty healthy couple with regards to our arguments and such. The other couple was very similar to us in that they are artists, have cats and have similar values to us. Unfortunately, we only got an hour, so the session's facilitator didn't get ask all of her questions. I would have liked to see what else she had to ask.

After that, it was time to start wrapping things up. All of us autistic folks got to sit in a row at the front and have the last word. It got to my turn and I started to talk about something that I'm passionate about (Listening to autistic people if one wants to help them) and the lady who went before me kept interrupting me! What to do? I did turn to her and say "Excuse me...can I please finish what I was saying?" She was agreeing with me and making some great points! However, she broke my chain of concentrated thought, so when I finally did get to speak again, it was nowhere near what I wanted to say...it was lost. I thought the rest of my statement was rather lame...and it was recorded by CNN...how embarrassing!

After that, we helped with the take down of the registration table and got a bunch of pens out of the deal! My husband and I got a chance to talk to our new friends, Johnny and Chris, the other couple from our marriage panel discussion. We exchanged ideas and contact information, so I will have to write to them soon.

We went straight to Wetaskiwin afterwards since I had Victim Advocate training the next day. Hubby got sick as we got into town and he ended up having to walk to the hotel because he was so sick. (Food poisoning) I went to this nice restaurant on my own and then went to bed.

The next day was "Sex Crime Sunday" as I called it, since that was the topic we were covering in our training. I was ok with the Sexual Assault section because it deals with adults who are assaulted. I had to leave during the sexual abuse section because that involved children and I went through it with my babysitter when I was a child.

It was at this point that I had my meltdown.

I quietly left the room, went up the stairs and outside into the sunshine. It was cold, but the sun was beaming down and warming me up. Then I fell apart. I started to cry, pace and then the panic attack hit! Crap....here I was, in Wetaskiwin, at a hotel and having a full blown attack in their parking lot with no one there to help me!

I whipped out the cell phone to call hubby. His phone was not on. Great. Now what? I dialed my friend Rob in Calgary. No answer. Tried his cell phone...no answer. Called his house again because I know he sometimes doesn't answer on the first ring. He also knows that if the phone rings very shortly after the first time, it's me having an attack.

Rob answered and I said "I'm having an attack." He knows what to do, so he started telling me about a cool dream he was having, which took my mind off my attack enough to take the edge off it. We then talked about a movie he saw the night before and I was finally ok enough to tell him what happened. We chatted about that for a bit and then went back to movies. Within ten minutes, I was ok.

I thanked him profusely and then went back to the training. I was able to sit through the rest of the day with no issues. We learned about stalkers and harrassment, as well as sudden deaths. (I'm actually ok with the subject of sudden death having working in palliative care, hospitals and a funeral home. I also have very positive spiritual viuews on the topic of death.)

Going home that night, I was worried. Am I slipping into a "bad phase" where I'll go for about a year having daily attacks, and lose my hair as well as a ton of weight all at once? How am I going to do with the interview I have with the police officer on Tuesday?

I figured that if I'm meant to do the VA thing, I'll be ok at the interview.

You know, I think anyone working with autistic children or adults should have to take Vistim Advocate training. They teach you how to positively work with someone under a great deal of stress, as well as how to manage your own cumulative stress!

Did you know that many of the behaviours displayed by autistc people are the same one's we're told to be compassionate toward with victims of crime and tregedy as well as each other? Some food for thought!

I went home and fell asleep on the couch for the rest of the night. I was totally wiped out and absolutely overloaded! Monday started off with us going to vote and then getting stuck in traffic due to road construction.

Work was a good thing for me since it is so routine and rote that I was able to normalize myself and my routine again. On Monday night, we had Aspie meetup and we saw lots of new people. I talked to my friend who had been at the conference about how much of an outsider I felt.

She said "You've learned to pretend to be normal so well that you look normal. The others probably didn't know what to make of you. Perhaps next time, you could relax a bit and just be yourself."

Sound advice...but what is "myself" anymore? I sometimes feel like I've been faking it so long I don't know anymore. If I were to let loose in public, I'd probably have a meltdown since I've been trained *not* to do that! (Once I'm at home I can go nuts!) Mind you, I am who I am. I may have to put on the act, but I know how to decompress and it works out well.

We then came to the conclusion that if she had introduced me, it might have gone better. Lesson learned for next time, I guess. I'll ask her to introduce me next time.

While were in the meetup, she came up with some great ways to help one's autistic child, which I am posting the link to here: http://comautworld.blogspot.com/2007/10/what-you-can-do-to-really-help-your.html These are absolutely amazing and I could not have said it better myself!

Another friend of mine who had been at my speech mentioned that the moon went retrograde in Scorpio that weekend, which could have been part of my problem. Who knows? I'll admit, I don't know a whole lot about astrology, but I know retrogrades are bad...and I'm on the cusp of Scorpio, which is probably why I always have such bad luck around this time of year and why I felt so out of place this weekend! (My birthday is coming up on Saturday and every October just seems to be bad luck around my birthday)

I got some great emails about my speech and one fellow said that I inspired him a lot. That makes my speech successful: one person walked away feeling like he had gained something from it. That's all I ever want when I conduct a speech: for at least one person to walk away feeling like they've gained something inspiring.

I had my interview with the police yesterday and it went *really* well. It just felt like the most right thing in the world to do!

Although getting my passport photo did not go as well! We went to Wal Mart and were told that they couldn't do passport photos because the camera had no batteries! (Um...you work in a camera store with a whole shelf *full* of batteries - lame excuse of the century, sweetie!) Sears ended up doing it and we got a free professional photo sitting out of the deal. We'll get to get a nice photo taken of us that we can use a Christmas cards or something.

And you know what they say about passport photos - It was the worst picture of me ever taken! *ugh* (Mind you...It was also taken on the day that I was all tired and overloaded)

Hopefully this weekend is better. It's my 32nd birthday on Saturday and I want to sleep in and perhaps hang out with friends or something.

Autistics are soulless? (There's a new one!)

“Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the familymembers, one by one..”

Wow...that's a pretty heavy statement to make about autism, isn't it? The statement was written by Dr. Jerry Kartzinel as an introduction to a book written by Jenny McCarthy called "Louder than Words: A Mother's Journey to Healing Autism".

In the same introduction, Dr. Jerry says “Jenny has done an incredible job retelling the story of Evan, who also was forced to make the perilous journey through Autism. Autism is not a dead end diagnosis. It is the beginning of a journey into faith, hope, love, and recovery.”

Very interesting.

So, Dr. Kartzinel... autism is "not a dead end diagnosis and it is the beginning of a journey into faith, hope, love and recovery" *but* it "steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the familymembers, one by one..”???

This is definitely a "WTF??" moment for me since he contradicts himself in these two sentences alone! What's worse is that he runs an autism clinic (he treats children and has this attiude - fabulous) and is the father of an autistic child!

I have the transcript of the Larry King Live interview that was done with both Jenny McCarthy and Jerry Kartzinel. (Read it here: http://transcripts.cnn.com/TRANSCRIPTS/0709/26/lkl.01.html)

This is how Larry King introduced him:

"Now joined by board certified pediatrician from Jacksonville, his practice is devoted to the research and treatment of autism and other neurodegenerative disorders. He's the father of an 11-year-old son with autism, and wrote the introduction to "Louder Than Words." Did you kind of specialize in this because of your son? What happen before the other?"

DR. JERRY KARTZINEL, PEDIATRICIAN DEVOTED TO AUTISM RESEARCH: "Oh Absolutely. I had four boys. It was my fourth boy who developed autism shortly after I gave him the MMR. My wife says, you broke him, now you go and fix him. I went what? I didn't even have a clue yet what happened. "

I'll spare you having to read the transcript here (you can read it at the link I posted, though). Throughout the interview he constantly refers to autistic children as being "broken".

Jenny McCarthy is the author of "Louder than Words: A Mother's Journey to Healing Autism", aside from her success as an author, Jenny has also been featured in Playboy Magazine (not as an author...if you get my drift), some movies ("BASEketball" and "The Stupids" to name two movies she's been in), and two short-lived TV Series that I have never even heard of: The Jenny McCarthy Show and Jenny.

I have not read the book, but I've been seeing Ms. McCarthy's name all over the place, from Oprah ro Larry king Live to the front cover of People Magazine. I had tried to stay out of this, I really did, but I do have my reactions to the hullaballoo caused by Kartzinel's comment. I admire Ms. McCarthy's desire to help her son, but at what cost to his self-esteem or health later on? (That's a question for another day)

There has rightly been a lot of uproar among autistics and some parents about this statement that was made by Kartzinel in the introduction of the book. Kevin Leitch who has a blog called Left Brain/Right Brain wrote an open letter to Dr. Jerry Kartzinel and read it in a video which he has placed on his site. Watch it here: http://leftbrainrightbrain.co.uk/?p=682

The transcript of the letter is as follows:

Dear Dr. Kartzinel,

We understand that in the introduction to Jenny McCarthy's
new book on autism, you describe it thusly:
"Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life's marrow out of the family members, one by one.."

As parents of autistic children we would like you to know that we totally reject your characterization of our children and consider the implication of their existence as soulless as dehumanizing and destructive to their development. These are children who are already more likely than their non-autistic peers to be bullied and ostracized. We feel that describing them as soulless will only add to the stigma surrounding autism and the negative perceptions the general public have of autism and autistic people.

We believe that one of the most important things we can do as parents is to raise our children with a sense of their intrinsic value. We believe that it is right to try and plant the seeds of confidence in their young minds. The fact that they are autistic makes this process even more important as they will face characterizations and judgments throughout their lives. We do not believe that describing them as soulless will help in this respect. We cannot help but think in fact that it would be impossible to feel anything other than hurt and insulted by this description.

Further Dr. Kartzinel, we do not accept that our lives as parents of our autistic children are ones that have had the marrow of life relentlessly (or otherwise) sucked out of them. On the contrary, as several studies have shown, many parents of autistic children - and those with other disabilities - come to terms with their new lives. If we may quote from King et al (2006):

"The themes indicated that raising a child with a disability can be a life-changing experience that spurs families to examine their belief systems. Parents can come to gain a sense of coherence and control through changes in their world views, values and priorities that involve different ways of thinking about their child, their parenting role, and the role of the family. Although parents may grapple with lost dreams, over time positive adaptations can occur in the form of changed world views concerning life and disability, and an appreciation of the positive contributions made by children to family members and society as a whole. Parents' experiences indicate the importance of hope and of seeing possibilities that lie ahead."

And from Bayat (2007):
"specific resilience processes, such as: making positive meaning of disability, mobilization of resources, and becoming united and closer as a family; finding greater appreciation of life in general, and other people in specific; and gaining spiritual strength." It then concluded that "a considerable number of families of children with autism display factors of resilience-reporting having become stronger as a result of disability in the family."

And in fact Bristol (1987) found poor adaptation in families of autistic children:
"was predicted by other family stresses, unwarranted maternal self-blame for the handicap, and maternal definition of the handicap as a family catastrophe."

As these words have been heard Dr. Kartzinel, you may have wondered who the children are in the images that accompany these words.

These are our children Dr. Kartzinel. As I hope you can see, they are not soulless. They range in medical diagnosis from severe low functioning autism with retardation to high functioning autism but they all share a common set of characteristics.

They have enriched our lives Dr. Kartzinel. They have not sucked the marrow from them.

And they are not soulless Dr. Kartzinel. They are children. We think they are beautiful children undeserving of such a brutal, harsh, inaccurate description.

I hope you can hear us Dr. Kartzinel. I hope you listened.

I hope Kartzinel reads this letter and watches this video too, Kevin. I really, really do.

How can he accuse any of us of being soul-less? How can he make that statement and raise a child and operate a clinic for autistic children?

How is this attitude helping anyone?

I've met lots of autistic people through the support group that I run, the online newsgroups and mailing lists that I frequent and am autistic myself, so I can honestly tell you that you will never see such passion, intelligence and soul in many people as you would see in autistic people.

I've seen the activity on a newsgroup which is all about autism and spirituality, run and posted to by people on the spectrum. I can tell you, there is soul there, for none can be as passionate about their faith or spirituality as an autistic person if he or she chooses to follow such a path. I am passionate about my faith and my connection with the Divine. If I had no soul, could I do that? I know an autistic who is a Buddhist Nun and she is passionate about her path.

Can you claim that you are this passionate, Dr. Kartzinel? How close are you with your God? How acquainted are you with your Spirit? Even if you are not religious, how much of your spirit do you put into your work or daily life?

I live every day in connection with my spirit and I appreciate the beauty that this world has to offer, but am not blind to the dark side of things.

Can you imagine having a father who constantly sees you as "broken", "soulless" and "relentlessely sucking life's marrow from the family members"?

What kind of self esteem would you have growing up with that kind of attitude (and let's not forget Mrs. Kartzinel who said "You broke him now you fix him!") being directed at you?

Thank God they aren't my parents!

But...this is just another statement about autism that has become famous. It is just another piece of "bad PR" against autism that seems to frequent the media. It's just another nail in the coffin in positive public image of autism and what we are capable of as it were. It's just another thing to discredit us and destroy our self worth even more.

Ok, that was probably a little too emotionally driven, but it is how I feel about this statement. It's hard enough being autistic in a world that encourages people with other disabilities to "be all they can be" and "there's nothing wrong with you"; but tells us autistic people that we are little more than vampires who suck the life marrow of our families, empty shells of children who were "stolen" or had their souls taken away, and are worse than cancer and bird flu.

It is an attitude like this that prevents any autistic child from growing up with a sense of self-worth.

It is an attitude like this that prevents those of us who are doing well from getting far in our careers or lives because we are instantly thought of as retards, manipulators or worse.

It is an attitude like this which prevents autistic people from benefitting from any form of care.

It is this type of attitude which caused people like Karen McCaron, Daniella Dawes (http://www.autismconnect.org/news.asp?section=00010001&itemtype=news&id=5925) , Diane Marsh (http://www.azstarnet.com/metro/174978), Alison Davies (http://www.autismvox.com/coroners-inquest-on-the-deaths-of-ryan-and-alison-davies/), Nicholaas and Agnes de Groot (http://www.raggededgemagazine.com/departments/inclusiondailynews/001098.html) and so many more parents and/or caregivers to kill their autistic children. (For a good article about and list of murdered autistics, click here: http://www.thiswayoflife.com/murder.html)

You don't think this could happen? It can and it has many times over. Read the news articles. See the blogs. It's out there. It's real and it happens too many times.

Autistic people are very aware of what is said about them. Read the numerous blogs and newsgroup postings to see just how aware they are!

Here's a beautiful one written by an Apie adult who writes about her own struggle with depression and suicidal thoughts: http://aspergersquare8.blogspot.com/2007/08/environmental-triggers.html

Let's not forget about those autistics who have tried taking their own lives (I'll leave their names out to protect their personal privacy), and those who succeded in doing so and are in the public domain so I can publish two of the names:

Nikki Bacharach (http://www.associatedcontent.com/article/118875/daughter_of_burt_bacharach_and_angie.html),

Tim Whattler (http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2007/07/30/hasper130.xml&page=1)

I do hope that you, Dr. Jerry Kartzinel, issue a public apology because, if you offended another group of people the way you have offended many autistic people and their families, you would be strongly compelled by others to issue an apology.

Or do you not care?

Are we not worth it?

Are we soul-less, second class citizens to you who have no idea what you've said and have no concept of how much it hurts to be spoken of in this manner? Can you hide behind that common belief that we are oblivious automatons who have no feelings or sense of self?

I'm offended, Dr. Kartzinel. Offended that a person in your position would make such a statement and then turn around and say diagnosis of autism is the start of a journey of hope, love and faith. Offended that you would raise an autistic son and choose to run an autism clinic with this type of attitude.

At the very best, you are a hypocrite. At the very worst, you are part and parcel of the destruction of the self esteem of all of those children under your care. You are part of the reason some autistic children are killed by their caregivers and many of us are drawn to depression and suicidal thoughts later on.

I demand an apology. I'm sure other "soul less" autistic people out there would like one too.

Shame on you.