Notes to moms of kids with autism. Pt 2

Figuring out what you're dealing with.

Autism is a neurological disorder that makes functioning, especially in society difficult. It's a spectrum disease, which means that you can be in a room with five kids that have ASD (autism spectrum disorder - anyone on the spectrum from high functioning to low) and everyone will look a bit different. This is why diagnosis is made based on observation and questions to the parents than by any diagnostic test. Especially since most kids are diagnosed between two and three, there are behavioral markers and developmental goals missed that are symptoms of autism and not a blood test or anything like that.

Let me boil it down the way that I do when talking to my neuro-typical five year old about autism: Autism just means that your brain works a little different. It still works and there is nothing really wrong or broken, we just need to talk and play with an autistic person in a way that they can understand.

Medically speaking, there has been some great research in the last five years about the mechanics of autism. We still don't know the cause exactly, though most believe that it is a combination of factors both genetic and environmental, but we are understanding more and more how their brains work. For instance, we now know that the two halves of their brains do not communicate very well. Actually, most of the different centers of the brain, like speech and sensory areas, don't communicate well. The neuro-pathways are either not connected or convoluted. What would be a single lane road in my brain is a twisted up mountain highway where the info can drop off of the side in my son's brain. For my son this was really obvious because he could echo speech but not talk intentionally more than a couple of words until around five. The echo part of his brain was hooked up but his attempts at intentional speech were gibberish. If I remember correctly he was five before he told me he loved me without prompting.

Another fact that scans have found is that the memory center of the brain is larger than normal. (Some believe that most autistics have a photographic memory, a theory that I agree with.) This is why patterns and scripting (more on that later) are so helpful. They can memorize that someone saying "Hello" means that their response should be "Hello", but it will be awhile before they are the ones initiating. This is also a reason for many tantrums because, to use an example from my life, they have a memory of what the grocery store looks like. So when that store takes out the video store to put in a pharmacy, that is a big and unexpected change. Change is scary. Scared autistic kids are unhappy kids and they will let you know it.

When your child goes out in the world it can be upsetting for them, mostly because of sensory issues. (And if you aren't paying attention and making adjustments at home then the house can be scary, too.) The equalizer on their senses don't integrate very well. It's like someone else turning the volume and brightness up and down all around you and your skin can be reeeeally sensitive or not feel much unless it's a more harsh stimulation. The rules can change from day to day and depending on mood. An already anxious child is more sensitive and has a lower tolerance to things that upset them, a happy kid will go with the flow a little easier. It's a lot to handle and takes a lot of bravery on your child's behalf. Realizing that the world is different on even these basic levels can help you to be more patient and creative in helping them to function.

Okay, so I've given you a few basics on understanding the nature of autism. I didn't give sources because it's really just what I know after years of reading books and article and talking to doctors and wonderful teachers. I actually had to work hard to be concise because what I have gleaned and what I could find with a day of research could fill a book. (I'm enjoying writing this enough that I think one day it will!)

That brings me to the final and maybe most important point - research with extreme prejudice. Everyone views autism a different way, as an enemy, or a sickness. People feel angry, sad, resigned or relieved to have a reason for the behaviors. So it stands to reason that these feelings and points of view will effect how and what you research. Some people are militant in their search for a cure, they read everything and can quote statistics and medical findings until they lose their voices. Some do nothing and assume that whatever services their schools offer will take care of it. But I urge a slightly different approach. First of all, accept your child for who they are and love them. Don't be put off by their behavior, they can't help it, but instead of trying to find the magic bullet to make it stop - try to find the tools to help them manage a condition that they will live with for the rest of their lives.

There is a book that was written by a man with autism. He can't talk but he can write and at the beginning of the book there is an explanation of how it was verified by several specialists that he was indeed the author. It was an odd book as one would expect from an person with autism, but there were two things that stood out to me and that I always remember. One was an explanation of self stimulating behaviors like jumping and hand flapping. He said that it was how he "found the lost pieces of himself". After I read that I lost any last traces of embarrassment over my son's stimming. In a store I will say, "Let's save that for at home" and he will take it down a notch. But at home he is free to do as he pleases because no one should have to lose pieces of themselves to make others happy.

The second thing that I remember is that he recounts the many healers and men of faith that his mother took him to in order to heal him. He describes in his detached way, how hard his mother prayed and how hard she worked to make him like everyone else. Eventually, he was able to communicate to her that it made him sad. He wrote that he didn't want to be the cause of her upset, he just was who he was.

With that in mind, do the research. Find out what autism is and look for advice on therapies and services in you area. Some people move to get better help for their child and I think that is great, we would if we needed to but we are extremely blessed where we are. When looking at therapies start with the big main ones, like ABA and a gluten free/casein free diet. For us, we can't feed our son GF/CF because he won't eat enough but we are able to be mostly dairy free and low on gluten. Too much and he gets disorganized, but we have to get enough calorie into him so he can grow. Regarding ABA, we opted to not do it. My husband and I decided early on that we wanted our son to have a childhood and not an endless progression of therapy sessions. I don't care how fun therapy is, it is not the same as family time in my opinion.

After you have studied the main therapies and made sure that your school is giving proper support (more on that later), then you can start looking to more alternative therapies if you would like. But be warned, every therapy has a miracle case or two and those cases are shouted from the rooftops. It's great that they worked for those people and if you want to try it and it will not harm your child then do it - but remember that there is not one cure for everybody. "Recovery" is a dream that many chase but very few find. If you want to chase it then just make sure that you don't sacrifice yourself, your family, every last penny of your finances or your relationship to the child that you are trying so hard to help in order to do it.

Remember, love and accept. Give them tools and help them grow, but be a loving parent because they are still really just kids.