Autism 101

When you have an Autistic person in your life it's a little hard for even the people closest to you, to understand fully what your life is like. And sometimes it's even more akward to ask how you manage certain things as a family. People feel shy about asking these things and it's understandable. Not many of us would say to someone that's lost their limb, "How did you loose your leg?" even though we may really be wanting to know so that we can better understand that person's life issues. Education, in my opinion, is power. Whether it's a friend or loved one, knowing the story behind an injury, loss or disease, gives you the compassion to understand that persons life struggles. Everyone has them, ours just may be a little different & new to you.

As a new idea for the blog, I thought I'd ask my friends random times throughout the months, to give me a few questions. Anything easy or difficult about our lives with the boys and how Autism affects us as a family. Then I will answer as honestly & plainly as possible. And if you don't know me, then I should tell you I'm pretty honest & don't do well at hiding things, so you WILL get an honest answer from me. I'm not a doctor, but I do have a degree in Child Development. But I consider myself to have my Masters in it now as well. After ten years parenting two Autistic children, I feel I deserve at least that right?;)

I also hope in months to come, that any of you that know us or even those that don't, will feel free to ask anything you would like to know. Don't worry if it's too personal, I'll let you know if it's something that I don't feel like sharing at this point in time. Now I will warn you, these questions are directed at ME, they will have answers about MY family. So please do not feel you need to compare my children & their progress to yours. If it's one thing we DO know about Autism, it's that all the children on the spectrum & their cases are very individual & different. And if you feel that what you're reading is "wrong" or I say something you don't agree with, stop reading & find yourself a new blog that you do agree with. It'll be a lot less bothersome to us both I promise.

This week my friend Lisa, who I've known since college, gave me some questions and I think they are great for starting this idea off right. Thank you Lisa for taking the time & having the interest to help me out.



1. When and how did you first find out your son's were autistic? Did anything "tip you off" as a parent?

This is a very common question actually. And I think it's the one people feel most comfortable asking. When son#1 was a baby there were things we noticed. Things that caught our attention but never alarmed us. We just waited until the next doctor appointment to ask about it. One was even by 6 months old, he never wanted to hold his own bottle. But you push that aside & say "What a lazy baby! Isn't that cute?" He also flapped his hands if excited and did walk on his tip toes. (those are sort of universal signs now) He hated anything new and would cry and place his hands over his ears if we went new places or loud places. Two examples of that are as follows.

Once when son#1 was about 9 months, we went to a high school football game outside. We made the mistake of sitting by the band. Bad idea. Son#1 flipped out crying & covering his ears and we had to leave.
Also, when he was older, about 4 yrs old, we moved to a new town & tried to attend a new church. He wasn't used to that building & cried, covered his ears and wailed. This to most people sounds like a temper tantrum, you spank them and make them do it. He put his hands on either side of the door & grabbed on and wouldn't let go. He never let go till we said we'd leave. He screamed at the top of his lungs, shaking all over and scared. You could see he wasn't just being a bratty kid. He was terrified of the new place. Too much stimulation, sensory overload. Too much for his brain to take in & process. Most of us use our brain, eyes, ears, nose etc to take in a new place & process it. Son#1 (and most Autistic kids) a visual learners, it was just too much. Like a circuit shorting out, he would have a meltdown.

Son#1 never babbled a lot or pointed at things. But I remember right before he was 18 months old, we went on a trip. He stayed with my parents and when we returned my mother mentioned he was saying baby. Son#1 had 5-6 words then. Soon after that trip, we did get the MMR shot. I just can look back & see he stopped using those few words & didn't speak again until he was 4 yrs old. The not talking, was a huge sign & that's when we sought out a doctor.
Talking to the doctor, she gave a diagnosis & we love her for being aware, it took us awhile to find her, and that she was informed about such things was a God-send. This was all so new in 1998-99. It wasn't the epidemic proportion it is now. It was just the beginning of all that.

Son#2 we were watching from day one. And the only different thing we noticed about him, was that he walked on his tip toes. (both walked early at 7-8 months) However, son#2 never spoke or babbled either. And now, he babbles, but still doesn't use words to communicate & he is 8 yrs old.


2. Sometimes friends don't know how to act or feel awkward when they discover a child is autistic. What do you recommend they do?

Umm, this is a bit more difficult to answer. Each person I encounter is so different in their personality. Some are blunt, some are so gentle & tactful, others are good at ignoring issues. I think everyone needs to do what they are comfortable with, but know that the person you're asking questions to, has their own personality also. Some only let you in so far, and other parents might be shy, upset, reserved or just relieved you cared enough to ask a question.

I'd go with how well you know the person. Get a feeling, a reading off the person. Are they relaxed? Then just be yourself. If they're uptight, look for ways to maybe help if you think that's what they need--maybe just pick up a toy that got dropped for the hundredth time. Or if they seem uptight and you see them focused & in their own world, sometimes it's better to just not add to any issues that may be going on at the time. But I think it's always good to reach out to parents whenever it looks to be a good, approachable situation. Let them know you're not scared off by their kids issues. And you can do that by just treating them like any other friend. Email them if you're worried about catching them at a bad time, or call & leave messages. Actions speak louder than words.

Maybe ask them when you see them, when a good time to call and catch up with them is. That way if there is a routine they adhere to (which I bet there is in most Autistic homes) you can avoid disrupting that therefore ensuring you get to really talk to your friend.

Around the children, I'd be yourself, don't touch or come into their space unless they approach you first. Remember all those rules about a stray dog? Sort of the same thing. You don't know this child or their issues they struggle with. Don't touch them, don't do anything to taunt them like offering food in front of them or offering candy (again, you don't know their diet or what they like/dislike--but you should ask the parent, they'd be happy for you to engage their child & will most likely tell you the way to do so). And don't get in their space unless they make the first move, you don't want to scare them. My sons are very affectionate but son#1 will tell perfect strangers he loves them when they meet him for the first time. However, son#2 does not want you in his personal space unless he comes around to "sniff" you out. Oh, and they can smell fear. Just kidding. Sort of. I think son#2 really can sense when someone isn't comfortable and it puts him at ill ease and then problems can start.

And perhaps it's good to remember there is a fine line between pity & compassion.

3. What are your thoughts about the whole Jenny McCarthy my-child-was-cured-of-autism story?

Well, here is where I might offend some people, but you asked my opinion and this is MY blog, so here goes. I read her first book on her son when it came out. It's always very interesting to me to hear about other stories of how Autism touched their life. I knew Jenny McCarthy was divorced, I wanted to know if that was a result of the diagnosis. The divorce rate among parents of Autistic parents is 80%. I wanted to know as someone with unlimited (so I thought) resources, if there was something I was missing out on to help my children. And I'm nosy. I love biographies anyway so this was a chance to peek into a celebrity's life and one who may have some of the same issues we have at our house.

First, she is a great story teller. I laughed, I cried and I learned some things about Autism I didn't know. Some things my sons never had to deal with. It was interesting. Hubbo read it. There were answers to questions we have for someone parenting Autistic children. Yes, those of us living with the disease in our home have questions for other parents too, it's probably just easier for us to ask them.

I did not read her second book. The one with "cure" in the title. I did watch her on Oprah, I did see many other interviews with Jenny McCarthy. I just got the impression (after watching her on the Oprah show) that she felt the need to cure her child of Autism. I'm not judging her motives, I think they are genuine. She is a loving mother. I just don't know that I believe any child with Autism is cured yet. Functioning on a MUCH higher level than before due to something that worked for them, YES. Now, I realize some eyebrows just went up. YES, of course I want my children cured too. I hope there is a cure, so my children can have babies without the worry of passing on this disease. But I live every day to the fullest, knowing my children will not die from Autism. There are so many other worse physical problems my children could have. We don't have it easy, but it's not the hardest road we could be walking down in life & we're fully aware of that.

I personally don't believe there is a cure yet. I think I've seen a few kids (that I know personally) do so much better in their strive for normalcy, from things like diet or therapies. That's wonderful! Thank God for that. I have seen son#1 go from not speaking and utter frustration to a verbal, high-functioning ten year old that is pretty darn smart. Even his social skills are improving daily. He's acting more like a pre-teen every day in fact. That pleases me & gives me less worry than when he was smaller. But I don't believe that even if son#2 talks tomorrow, he's cured. There are things they live with daily that will probably always be there--even if to the average person they act "normal". Each child on this spectrum is so very, very different, that I do not believe there is one cure for everyone to drink & be well. I pray there's a cure in my children's lifetime, and I hope that includes isolating the gene so it's not passed on.