National Autism Awareness Month: The Human Side

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April is National Autism Awareness month, a time for us as a Nation to reflect on what Autism really means.  I'm not talking about causes, cures, or numbers, but rather the family toll and how they manage to cope.  Autism is having a growing impact on families all over the world, and it's about time we start looking at the human side of this condition.  Keep in mind that I speak mainly from personal experience here, and that is hardly a broad interpretation of how families can cope with Autism.  But I'm seeing a disturbing number of police reports about parents "overwhelmed" by the diagnosis and doing unmentionable things to their children.  Perhaps it's time we stop talking about causes and cures, and start talking about coping.

When your child gets the flu, you know what to do.  When your child gets chicken pox, you know what to do.  If your child even loses a limb, you know what to do.  But when your child doesn't seem to notice you at all, doesn't respond to you when you talk, and ultimately seems to ignore the world around them, you haven't got a clue what to do.  Your doctor/psychologist/neurologist may tell you your child has Autism, and you are suddenly thrust into the confusion that is the Autism Spectrum.

The main problems with getting a diagnosis of Autism is the broad spectrum that diagnosis covers.  You don't know where your child is, you don't know where your child will end up.  You only know that at this moment, your child has specific challenges that need to be overcome.  All of a sudden your world comes to a crashing halt, and you can no longer plan for years in advance.  Instead, you are planning each day at a time, working out a strict schedule to keep everything flowing.  You may have to deal with sensitivity to light, sound, touch, food textures or flavors, colors, fabrics, etc.  You worry about potty training because of the endless hours it takes to work out a routine that your child will use.  There is so much in the details that you end up getting caught, overwhelmed, and need an escape.

Then, there are family and friends that don't understand the sheer weight of responsibility you are putting on yourself.  They can't understand why you have to cancel parties, relocate family gatherings, don't invite others over for fun outings, or even avoid various restaurants.  They also are quick to run Google searches on Autism to find the solution for you in their effort to help lift the weight from your shoulders.  They mean well, but they don't seem to understand that you are already doing research, talking with teachers and psychologists, and already tailoring ABA techniques for your child.

And then there are the critics.  Those that don't "see" your efforts, and instead pass judgement.  They seem to think they are the supreme authority in child care, and know much better than you how to raise your child.  These are many and varied, ranging from sympathetic family members who just want to get you to wake up and "start disciplining your child" to complete strangers who are just downright mean.

So what is a parent to do?  You want to protect your child from the evils of the world, whether or not they are well-intentioned, and yet you know that eventually they will need to fend for themselves.  What do you do?  How do you manage it?  How to you help your child, all the while keeping your sanity with all the other tasks you have in front of you?

Personally, my wife and I have found that just being good parents is the best thing you can do.  Our son has high-functioning Autism, which means he has a high IQ, great self awareness, and is academically advanced in spite of his lack of verbal skills.  He types words on the computer keyboard (and on an iPhone or iPad screen), will look at you if he knows you, and enjoys the world as though everything were a game.

With this in mind, we manage as best we can by keeping the schedule as simple as possible.  We have set times during the day when things change (i.e., morning routine to travel to school, home from school to play, play time to bed time, etc.).  Most things on the schedule are flexible, such as how playtime is conducted, what will be available for breakfast, lunch, and dinner, etc.  We keep the details as unstructured as possible, while keeping the higher level of structure constant.  This is handy when it comes to traveling on vacation as the structure doesn't change, just the events within the structure.  Our son thrives with this structured chaos, and it relieves a lot of stress from us.

We also don't get hung up on the latest and greatest theories of "curing" Autism.  While I do blog about research and find the news about the brain, genetics, and Autism fascinating, I don't worry about treatments, alternative treatments, and various other "claims" of curing Autism.  I accept my son for who he is, for how he is, and how he can better improve himself.  The nice thing about this process is that I will be feeling frustrated about lack of progress one day, and the next day notice that my son has not only mastered the task but does it without prompting.  Potty training went that way for a while, and though there are still strides that need to be made, has been progressing very well.  I used to worry that my son would never be potty trained, but now I know he will have no problem with it.

Keeping abreast of what our son does in school is essential to his development.  In a time when it seems Teachers and the teaching profession is under attack, your child's teacher is the best resource for help in progressing your child.  Your child's teacher will know where your child is lacking in their development.  Depending on their expertise, they may or may not know how to close the gap, but they should at least be able to point you in the right direction.  Sometimes that means setting up additional therapies, working through therapy techniques at home, or restructuring your time to better provide learning opportunities for your child.  It doesn't matter what technique you try, as long as progress is being made.

Know that progress can be slow.  For every step forward, there can be half-steps or full steps back.  But also know that your child's brain is active and can work through much of the effects of Autism to progress.  Expect changes, but don't expect them to come quickly.  It may, and you will be pleasantly surprised, but if it doesn't, don't get discouraged.  Autism is difficult to live with, but not impossible.  And don't start placing blame for lack of visual progress.  Blame doesn't solve anything, it just causes more stress.  Instead, look for solutions instead of problems.  The solution is more important than the blame.

Anyway, that is my personal experience with Autism in my family.  There are a lot of problems that can be directly tied to Autism within a family, but it's not something you can change, like bad Cable Internet.  It's something you need to work on, put effort in, and learn to accept as part of your life.  Because it is your reality, your child's reality, and it's something that should be addressed in that manner.

If you have any stories about dealing with Autism, go ahead and share!  But be respectful please, or the comment may not make it to everyone.