Autism 101

I've mentioned this only briefly before but thought it might be helpful for me to elaborate a little on Kael's diagnosis. Mostly because when Kael was dianosed, I would have loved to have known then what I know now. I do not pretend to be an expert on Autism but I am an expert on Kael. :)

Kael's official diagnosis from the University of Iowa in June 2009 is Pervasive Development Disorder, Not Otherwise Specified. If you're anything like I was when I first heard them, you hear those words and they mean nothing. If you want to know and understand Kael, they will come to mean everything. When Kael was very little and we started working with the local AEA, people kept telling us, "Yes, he's a late talker and yes he has some quirks but he's just not that bad." In other words, we can't help you. People didn't really start helping us with him until we got an official diagnosis. That said, Kael's diagnosis does not define him- he is first and foremost one of the most fun-loving, kind hearted little boys you'll ever meet. His dianosis is not an excuse but rather an explanation for some of his behaviors.


What I'm doing:

I write a "Kael's Daily Report" every day when he gets home from school. Sometime it's just a sentence, sometimes a paragraph. I write anything that seems important for that day: what color he landed on, who he played with at recess, anything that bothered him, if he forgot anything at school, stuff like that. It really helps me keep track of how he's doing and I can see if patterns emerge (example- if he always forget things at school on Fridays, or if he's more agitated on Guidance days, etc.).

We have our family calendar, but recently I've also started Kael a calendar of his own in his room. He can write anything that is important for him. For example, last week Kael needed a haircut. He needs time to get used to the idea (he has always been slightly startled by the sound of hair dryers) so I give him control by telling him, "Kael, this week you need a haircut. Please pick which night you'd like to go and write it on your calendar." He picked Wednesday which gave him two or three days to prepare himself, then when Wednesday came he confidently went to his haircut without any argument.

I also use this calendar to write out our menus for the week (assuming I have them planned). Food is important to Kael (he's such a boy!) and if he knows his favorite meal is coming up, it gives him something to look forward to. On the flipside, if I'm making something that's not his favorite, he can prepare for that too.

(My) Kael's notebook. A friend told me she was doing something similar for her son and I find it to be incredibly helpful for myself and for Kael's teachers (he has 3 teachers he sees frequently: general ed, special ed, and speech) It's just a quick snapshot of Kael and his diagnosis for someone to be able to look at if they are not familiar with Kael. It's also very helpful for those who aren't at all familiar with ASD kids. They say if you've met one kid on the autism spectrum, you have met only that kid. That is to say that while they share some characteristics, no two ASD kids are exactly alike. Here's what it includes: a "Top Ten" list of things to know about Kael (I will try to post this list sometime- currently his book is at school and I can't remember all the things off the top of my head), his report cards, his IEP, copies of (highlited) literature that pertain to his diagnosis, his official diagnosis report from the University of Iowa, and a few blank pages for teacher comments/concerns.

Reading. A lot. Here are my favorites:

Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm. This is a must-read for anyone who knows someone with Autism. In other words, everyone should read this book! It's an easy read and gives such a great summary of what kids on the autism spectrum go through every day.


It's So Much Work To Be Your Friend by Richard Lavoie. Chapter 14 on Aspberger's touches on a lot of the difficulties Kael has, and how to best deal with them. The chapter on anxiety is also pertinent.




How To Make School Make Sense by Clare Lawrence. This is one of the first books I read and I still recall several of the ideas. We just recently put one in place- a list for Kael (now that he can read- woo hoo!!) to check at the end of every day to make sure he is bringing all necessary items home from school. Instead of his teacher saying, "Kael did you get your backpack? lunchbox? coat?" we can boost his independence by letting him read his list and gather all of his items. Independence boost= ego boost.




What I'm not doing (I feel this is equally important as what I am doing):


Altering his diet. A GFCF (Gluten-free, Casein-free) diet is just not necessary for him at this time. That's not to say I haven't thought about it. It would absolutely be life-altering for us as a family and I'm not sure it would alter Kael's behavior that much.




Worrying about meds. There has been quite a bit of media coverage lately about using Namenda (Alzheimer's perscription medicine) for kids on the autism spectrum with mostly positive results. Again, we're just not there yet. I'm not 100% against it if we ever get to that point but overall Kael is doing so well with the modifications we've made that medicating him is not necessary.

Talking to Kael about his Autism. They say kids on the spectrum start to "realize" they are different around age 7. I suspect Kael will know sooner but I truly feel now is not the time to talk about it with him. I sure hope I know when the time is right and pray I handle it well. There was a very powerful episode of Parenthood on recently that showed how the parents told (the boy actually found out accidentally) and explained Aspberger's to their son. I think it's really cool how topics so very real like Autism are starting to work their ways into our TV lineups. Knowledge is power and I can't help thinking that the more people who know about and understand Autism will in turn lead to a much less harsh world for Kael to grow up in.

What you can do:


Show him love, patience, understanding and kindness. They say that everyone you meet might be fighting a bigger battle than you are and that couldn't be more true for Kael. Everything he does is more difficult for him than it is for the neurotypical 5 year old boy. It's hard for him to make eye contact. It's hard for him to carry on a conversation. It's hard for him to wear blue jeans because he hates the material. It's hard for him to read social cues. It's hard for him to make and keep friends. It's hard for him to filter all the sensory input he's dealing with. He works hard at everything we consider second nature.


Kael, I love you for your sense of humor, your no-strings-attached love, your determination, your honesty, your protectiveness, your caring nature and everything else about you. God gave you to me to teach me a little patience, a little restraint and a lot of hope. Kael, you are so loved!