Sunday, January 26, 2014

When being part of the solution IS being part of the problem.

One of the most common issues in the world of autism is the perception of Autism itself as a problem - or even worse, as the personification of a problem.

It's fairly common in the early days of diagnosis when parents simply aren't handling the changes to their expectations but if it persists for more than a year then it becomes a problem which can end up doing a lot of harm.

Objectifying autism takes the focus off the child and puts it on the condition instead. Parents, groups and companies in this mode spend their time thinking about how to cure and prevent the condition rather than on how best to help their children.

The focus then becomes extremely negative and it is only a small step from discussion of murdering an imperfect fetus to the murder of a child under your care. This outlook doesn't help anyone.

It's not about "Saving the World", it's the smaller, personal stuff that matters

Being the parent of a child on the Autism spectrum isn't about "saving the world from autism" or preventing others from having to walk in your shoes. It's about arming your child with the knowledge and skills to make the best of their lives.

It's not about prayer, though you can certainly pray if you want to. It's not about words like "can't" or "never" either. It's simply about hope and perseverance and good parenting.

In fact, take away the word autism and the aims of the parent of a child with autism are the same as any other parent. We want our children to thrive and be happy.  The only problem is that autism presents bigger hurdles both from a personal achievement point of view and also from "acceptance by others".

Doing Good by being Patient
It's not a bad idea to get a handle on the general order of the developmental milestones but don't pay too much attention to the time frames. Your child will achieve these things in their own good time. You may find that sometimes those milestones come completely out of order too.  In my case, my son was a great climber long before he could walk.

Then there's things which just seem too hard. Your child may not handle some seemingly simple challenges, like eye contact or like hand-dryers in public toilets.  That's ok. There's no need to pressure them.  A lack of eye contact doesn't necessarily mean that they're not listening and as for dryers; just use the paper towels. There are more things in life to worry about.  Believe it or not, most of these things will come in time without you harping on about them or trying to force your child to do things that are uncomfortable for them.

Protect yourself and your children from bragging parents and grandparents.  They all want to say great things about their own children, how they got straight A's or have so many friends, or play so many sports, or instruments or read so many books, or do so many chores.  Half the time this isn't correct at all and even when it is, the conversation often isn't about the child - it's simply about the parent praising themselves.

Listening to other people's bragging this is detrimental to your relationship with your child and your feelings as a parent. Life isn't a contest and entering into this kind of thinking will only open the doors to a world of pain. 

There's no Solution, There is only life, love and laughter
The biggest problem with autism is the concept of a "solution". The idea that we can somehow "fix" our children and make them normal.  If you think that finding a solution is the answer, then you have part of the problem.  Looking for a solution is a good indication that you have not accepted things as they are.  That you can't move on and that you're in no position to help your child.

I don't personally believe that there's an "instant cure" for autism in individuals who have already been conceived and the reality of it is that even if such a cure were to be discovered tomorrow, it would be probably twenty years before it was effectively tested and available for use.  Most likely, such a "cure" would be priced out of the range of normal earners too.

No matter what you do or how much money you throw at autism research, the fact of the matter is that it won't help any child who is already born. All you are doing is helping companies line their pockets.  

If you really want to help those with autism, donate some time or money to providing respite care for parents or towards providing living and learning tools for children and adults on the spectrum. If you're an employer, consider employing someone with autism, you may find that they provide some unexpected benefits.

There is no solution because there is no problem, no puzzle to be solved only a child who is different who needs to be loved and to be shown what happiness means.


Nagaraj Pudukotai said...

You put it very well. Now my hope is it reaches it out as many parents as it can.


Stephanie said...