Well…it’s about time to start explaining some things to Kate’s big-sister Grace. She’s growing up fast and she’s pretty darn smart.  Her friends are growing up too and they’re already starting to notice Kate’s a little different.  I can tell that Grace understands her little sister, hell she’s exposed to her all the time, but for our friend’s kids autism can be a little confusing. I imagine autism must be a tough one for a child to figure out. "Kate looks like everyone else, so why does she act so different sometimes?" Tough question kid.

So as parents what do we do when there's a tough parenting problem? Ask our parents, or our friends? They’ve been there before right?…………not this time.  So; if we can’t ask our family and friends, what can we do??  That’s right, we GOOGLE it!!  So that’s what I did, and it didn’t take long to find some pretty good ideas. I’ve paraphrased the highlights and Shanell and I added a few of our own. The is hope that other parents can use this as a guide. I know I will use these ideas with Grace. We want everyone and their horse to know about Kate and some of the struggles she’ll face because we believe it will give her the best chance for success.

So here are a few talking points. Please use them when your kids start asking you some tough questions.
Here goes..............Our Uneducated guide for talking to your kids about autism;

You can’t tell someone has autism by looking at them. They look the same as you, me and all your other friends.

Kids with Autism have to work hard at some things you might find easy. Like talking, playing games, or making friends.

They might do something repetitive because it’s fun or because they want to block out something that is overwhelming. Sometimes they will do things like jumping, rocking, or flapping their hands. I know it looks funny but it’s OK. You can “join in” with them if you want. They would probably love that.

Everybody does something that’s weird. Nail biting, tapping feet or chewing pencils. It’s OK to be different.

Some kids with autism are “sensory seekers”. They seek out pressure and like to bang and crash and play rough. Other kids are “sensory defenders”.  They see, hear and feel things very strongly and may need to shy away from noise, light and rough/busy play.

Sometimes kids with autism won’t know how you’re feeling and you might not be able to tell how they’re feeling.  Tell them how you feel when you’re angry or sad or happy and ask them how they feel when you’re not sure.

Just like you, kids with autism can get really interested in a topic, or a game, or a toy. They may forget that you might want to talk about something else or play a different game.  It’s OK to ask if you can do or talk about something else.

Some kids with Autism find it hard to join in a game or they might join in at the wrong time.  Just like “normal” kids that are just a little shy, kids with autism might not know how to ask if they can play with you. They might need your help understanding how to play the game.  Ask them to play with you and be patient, it’ll take a while but they’ll get it.

All kids with autism are a little different. They don’t all like the same stuff. Different things can make them feel bad too. It depends on the kid. Someone might really like music, another might think it’s too noisy and like quiet time.

Sometimes kids with autism can have really bad "meltdowns" when they aren’t happy or feeling overwhelmed. It’s not a tantrum. Don’t worry they’ll be fine. Don’t be afraid.

At home and school, teachers and families will probably have different rules for your friend with autism. I know it might seem unfair sometimes, but your friend isn’t being bad. Don’t get mad at them.

Your friend with Autism probably has a sister or a brother. I bet that sister or brother would love it if you made a special effort to play with them.

You can be the best helper to your friend with autism. All you have to do is play with them and be a little patient.

It’s OK to ask your friends Mom and Dad about autism.

Here’s a resources from the Autism Society. The first one is for talking to children and the second is for talking to teens.

http://www.autism-society.org/living-with-autism/family-issues/growing_up_together.pdf

http://support.autism-society.org/site/DocServer/NEWasa-growing_up-teen-final-rev.pdf?docID=11041

Here’s a link to a few videos about a filmmaker who’s befriended a young man with Autism.
Chad and Jenks
I like these because Andrew is really genuine in his enjoyment of hanging out with Chad.  Being Chad’s friend is very rewarding for Andrew and he gets just as much out of the friendship as Chad…probably more.

The Bottom Line:
We feel that Kate’s peers, can teach her more about life and being a friend than we can. I'm going to start explaining things to Grace soon and we hope you'll do the same with your kids.If we talk to our kids about autism early and often then they won’t be uncomfortable or scared around kids like Kate.   If I was going to do a “Ted” Talk that would be “my idea worth spreading”.

I haven't done one of these in a while and it's probably because I've been fighting some battles. Meetings with our Provincial Finance Minster, Education Minister, and an Administrator at our Local School District have taken me away from the blog.  So my apologies.

I've been doing my absolute best to talk to folks about what it's like to have a child with Autism and here's what I've learned. "People" are hard to teach, but teaching a person is much easier.  I'll let Tommy Lee Jones help me illustrate the point.

OK. So that's a little harsh, but what a hidden gem of insight, buried within a Hollywood blockbuster! I can remember watching that movie and thinking "Wait a minute what did he just say?!?!"  I just came to the movies to eat popcorn and watch some aliens get blown up.  It was kind of a cathartic moment for me. "People" are happy and comfortable with the realities that they've created either for themselves or by what's presented to them on television. Here are two examples; 1) Global Warming is a big problem and is starting to make people scared? Just re-brand it as "Global Climate Change" and watch as the issue gets swept under the rug and forgotten about.  2) Rates of Autism Diagnoses increasing at an alarming rate? Don't worry watch this video about a 12 year child doing math at the level of a PhD. Astrophysicist and watch as the masses take a collective sigh of relief.

So here's what I've learned as I put myself out there and been open and honest about what ASD (autism spectrum disorder) is. I can educate a Person, but I need to do a better job at educating People. People come with some pretty out there pre-existing ideas. All I can do is help them find the reality.  The struggle is person to person at this point.

At this stage, we feel Kate is pretty safe. She's at a daycare with people who love her. Her family and extended family support the hell out of us and Kate.  But, I'm scared about when she leaves her loving little world. The situation at M Spa that we've all heard about doesn't happen everyday. But I guarantee that other people at that spa that day were thinking. "Those parents should do a better job of controlling that child!!" Autism isn't something that is easily recognizable but it is easily misunderstood. There are no physical signs that would show the layperson that the person or child in front of them has ASD and the child may appear to be acting bad or abnormal. When humans are in a group, like a public place we don't like abnormal things. There is an expectation of how a person should act.  We can get scared and unpredictable and yes even a little dumb when confronted with someone acting different.

I believe that people with Autism can help us all be a little less scared, a little smarter, a little more accepting and ultimately a whole lot better.

Honestly, should we really be surprised that we can't get it together when it comes to treating Autism?

Here's a quick list of possible therapies and treatments (obviously I know not all of these therapies have 'scientifically acceptable' evidence behind them but the growing list speaks to a community looking for variation when treating their child): Defeat Autism Now (DAN!) protocol, socialization, Pamela Wolfburg and playgroups, Auditory Integration Therapy, Lovaas and Applied Behavior Analysis (ABA), early intervention, home-based, school-based, residential care, TEACCH, Boston’s Higashi School, special diets, promises of a cure, vitamin B-12, swimming with dolphins, acupuncture, play therapies, The Son-Rise Program, Relationship Development Intervention, Floortime, physical therapy, music therapy, equestrian therapy, and Intensive Multi-Treatment Intervention (IMTI). Source (http://www.autismfile.com/treatment-therapy/moving-toward-a-multi-treatment-approach-to-autism-the-whole-is-greater-than-the-sum-of-the-parts).
These treatments have been developed over the years by psychologists, doctors, academics, parents etc.  All well meaning folks, but the system from within they operate is antiquated and slow.

As a parent I find the developers and proponents of these treatments exhausting, and needlessly competitive. Time for a wake up call.  YOUR SYSTEM IS TOO SLOW TO KEEP UP!!!!!!!

Just like the obsolescence that new computers seem to have within a week, "evidence-based" treatments seem to be light years behind current research.  Why is it that the medical system is so slow to react to change and so quick to reject something new? Why does something have to turn up in a medical journal before it is taken seriously? If you want to find out if something works, ask the true experts in the autism game: the parents.  I understand the scientific method and the process that should be followed before something gets the stamp of approval. Have they put protection of the process/bureaucracy over protection of the patient's rights? Probably...

The truth I see is that every one of the therapy and treatment options listed above probably has the ability to help our children to varying degrees of success. The job of education and medicine is to evaluate each child and determine what is best for them on an individual basis. Pick treatment and therapy from the menu and dive in with both feet.  Don't "treat by legislation". There is no cookie cutter treatment that will work for every child with ASD. Stop focusing on protecting the sanctity of your "evidence based" approach, and the bureaucracy. The opportunities for success are staring you in the face. They are two, three and four year old faces, just itching to learn from you. Allow the professional educators and the therapists on the front lines to evaluate each child and TEACH, TREAT and be MERRY!!!