Monday, November 26, 2007

Hi! I'm New to This Blog!

Hello! My name is Maureen, and I appreciate the invitation to participate in this blog. I'm 36, and I have been recently diagnosed with an autism spectrum disorder (Pervasive Developmental Disorder-Not Otherwise Specified). I have a Ph.D. in health education, so I'm excited to be involved in a project which will educate people about autism spectrum disorders. There is not much information or support for adults with an ASD, so the more we can educate this underserved population, the better!

I was always "a little different" as a kid. I started to read my first words at 2 1/2 years, but socially and emotionally, I was a bit delayed. It's amazing to get a diagnosis where everything is finally starting to make sense. I call the diagnosis a blessing and a curse. A blessing because as I mentioned, I no longer feel the need to blame myself for not being a "normal" 36-year-old woman (I know I've done everything I can do). It is a curse because other than the anticonvulsants I have been prescribed, I am confused about what I should do with my life. My current job as an instructor is extremely difficult because I am so sensitive to the lights and sounds of the room. But as I learn more about the reality of having an ASD, I also realize how much I can help to educate people. I'll post again soon! Thanks for the invitation! Maureen :)

9 comments:

AutismNewsBeat said...

Thanks, Maureen. I'm interested to hear your thoughts on the quack-cure industry that feeds off parents of autistic children. How do you feel about people who think you are "mercury poisoned" or "toxic"?

shannonj said...

Thank you for sharing, Maureen. Makes one wonder how many other adults are out there--just not fitting in.....Have you ever read any of Donna Williams books? She is an adult with autism and her insight is so helpful. Also, Stephen Shore is another adult on the spectrum who writes and speaks on his life and challenges and successes.

Heraldblog said...

Dan Ackroyd has Aspergers. Bill Gates and Steven Spielberg both show symptoms, but haven't publicly come out.

MaureenJohnson said...

I appreciate everyone's comments. I have mixed feelings about the mercury theory. I suppose there could be some truth to it, but even if there is, it takes more than one factor to result in a complex disorder such as autism.

My medical care provider said my brain lacks the filter I need to block out external stimuli. For this reason, one quiet discussion between two people distracts me as much as a student yelling. I was born with this neurology, so I don't understand how mercury from a vaccination I was given at age 3 could have altered the brain I had already been born with...it just doesn't seem logical.

AutismNewsBeat said...

Nothing wrong with your logic. Among serious researchers, the mercury/autism link is dead. The evidence against such a connection is overwhelming. Unfortunately enough people still believe it that we are seeing a decline in vaccination rates. Other unfortunate side effects are the abusive and ineffective "treatments" inflicted on children. If it's not too personal of a question Maureen, were you made to feel that something was wrong with you when you were a child? That you needed to be cured? I ask because I'm wondering about the message that sends to a child. All children need acceptance and understanding, and I'm not sure that's possible when the parents are constantly trying to change what can't be changed.

MaureenJohnson said...

Well, autismnewsbeat, our family had a number of problems including alcoholism (father). As a child, I was under the impression that something was wrong with me because I was not like my brothers. As a baby, I curled up in the fetal position. I also cried whenever there was moderately loud noise or even the flash of a camera. And I guess another argument I have against the vaccine theory is that both of my brothers were of the same bloodlines, were raised in the same environment, and received the same vaccines. And yet, neither of my brothers demonstrated the behavior I did (even though autism tends to be diagnosed in four times as many boys than girls).

But I digress. In my social interactions and in my delayed fine motor skills, I felt there was something wrong with me. There were also cases where teachers told my mother that if they so much as looked at me, I started to cry. I also did "weird" things such as wak around on my tiptoes all the time. Apparently, I also wore earless Mickey Mouse hats and put them over my eyes so no one could look at me. But it was especially when I got to be around 12 when it became obvious I wasn't like the other girls. I was either a "rehearsed" nice girl or I flew into a tantrum. Needless to say, the fact that I preferred to stay in my bedroom instead of going out with others seemed unusual to people.

You've really opened a can of worms, autismbeatnews:) I can answer anything else you'd like to know.

By the way, I'm not trying to disregard shannonj or heraldsblog...I appreciate your comments as well!

AutismNewsBeat said...

I'm also Heraldblog. That's my default Blogger ID. ;-)

Yes, there's a huge can of worms to open anytime a media outlet reports on autism. The misinformation and urban myth about this condition is astounding. You ever heard that the Amish don't have autism? Not true. Measles virus found in the gut? Not true. GI issues are a symptom of autism? Not true.

My 12 yr old son Chris is PDD-NOS. He's doing well academically, but he's clueless with regards to social interactions. I've been grieving in one stage or another for years, and I understand how that grief can morph into an irrational belief in autism recovery or cure. I'm in a better place when I accept Chris's autism, but acceptance still doesn't come easy. And I worry constantly about his future.

So I guess I'd like to hear what advice you would have for parents of autistic children. What hope can you offer besides the false hope of chelation and HBOT?

MaureenJohnson said...

Hi, autismnewsbeat! I think society has a tendency to find fault with people who have disabilities. I think being honest with Chris about his autism and being supportive of him is the best gift you can give him. Help him to understand that people may not understand what he's going through and they may even try to dismiss him. But remind him of the talents he has and nurture those strengths. Also realize you can't shelter him from everything and everyone because that won't prepare him for life. But having a strong support system will help him navigate through his life...even on those tough days. A little spirituality doesn't hurt either!

MaureenJ0812 said...

Another ray of hope for parents should be the realization that adults with autism spectrum disorders can succeed. I am not the only adult with both an ASD and a Ph.D. (look at Dr. Temple Grandin). Yes, I sometimes struggle with different aspects of my life (including my job and my relationships), but look at all of the people without autism spectrum disorders who have these struggles.