State of Autism: Where Are We, and Where Do we Need to Go?

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This month, being Autism Awareness Month, has been filled with media specials, celebrity promotions, jewelry sales, and debates about the causes, cures, and impact of Autism in our current life.  It's all great, and all valuable to help shed light on this otherwise perplexing condition, but where do we go from here?  It's much like an event given by Congress to bring attention to the Budget, War in Iraq/Afganistan, or Healthcare.  Lots of information, lots of hot air, lots of media attention, but what actually gets done?  That's where I am with Autism Awareness, at the moment, wondering where we are going.

It seems to me that the Autism Community is bickering so much within itself regarding the causes of Autism that it doesn't take into account the Future of Autism, or those on the Spectrum. Instead we spend time debating Genetics vs. Environment, Diet and Vaccines, MSG and Gluten, that we are missing the big picture.  Regardless of the "causes", the growth of Autism in the world, as a diagnosis, is becoming noticeable, and will soon overwhelm the meager resources available to the community.  Something needs to get done, and setting blame isn't going to accomplish anything.

So what is my goal with Autism Awareness Month?  To start the ball rolling on getting more resources to more people, and all without breaking anyone's budget.  That's why, interestingly enough, I am such a fan of tablets like iPad.   But how does that get accomplished?  Through acceptance, necessary tools, taking responsibility, and getting the necessary support.

  • Acceptance:  This works on a number of levels.  It's not just about accepting someone with Autism as being normal but with a condition, but more as a parent accepting our children as just that, children.  People with Autism are not any better or worse than anyone else, they just have a condition.  They hate, love, hug, hit, etc. just like other children, but they don't understand the social context of what they are doing.  They therefore can be disciplined (within reason, of course), praised, loved, etc. just like any other child.  Treating them differently because they are different highlights those differences, instead of identifying the similarities they may have with other children their age.  That is true with anyone, and no less true if that child happens to be on the Spectrum.
  • Tools:  I keep thinking back to a speech by Winston Churchill in which he famously said, "Give us the tools, and we'll finish the job!"  As a parent of a child on the Spectrum, I often feel as though I don't have any control over my son's development.  It's not that I'm not involved, it's just that I don't know what I am doing, and that seems to be the most frightening thing about my son's condition.  I don't know what to expect, I don't know what to do to help him, and as such I feel as though I have to turn my son over to those that do know in order to see progress.  I don't like that, as being an educator I like being part of the education process.  We as parents need to be given the necessary tools to provide help for our children.  A huge part of that is working with their teachers and therapists, but it also means having access to the same information that they do.  I feel lucky in that my son's school psychologist, special education teacher, speech therapist, and occupational therapist have each been very open about the data they are testing against and what they are looking for as signs of improvement.  I would otherwise be forced to result to various questionable therapies being circled around the Internet, rather than educated, targeted therapies that help my son.
  • Education:  going along with tools, education can be huge for parents.  We are bombarded with theories, surveys, media attention over some crackpot theory or another, and we generally don't know what to believe or not believe.  Add to that the mysteries that still exist with Autism, and we are navigating very muddy waters with our children.  But instead of worrying about causes, let's look at solutions.  We as parents need to be part of the day to day process, learning how our children are progressing, what progress they can show, and what we can do to help them engage.  Recently I have been working with my son to show a correlation between spelling and words by using a text to speech tool on my iPad.  Stuff like that has been very helpful to both him and me, and I definitely look forward to it.
  • Responsibility:  We as parents need to take responsibility for our children.  I'm not talking about the cause, because that doesn't matter.  It's done, and it can't (to date) be undone.  Instead, I'm talking about taking responsibility for how our our children learn, behave, progress, and interact with others.  It's not about blame, but rather about taking the parental role and making sure our children succeed.  Sure, it's a lot of work, and sure, we wonder why we have to work so hard when it seems other parents have it so easy.  But it's the reality of the beast, and we can't just ignore something just because we don't think we will be good at it.  We all, as parents, learn as we go.  It's all part of the parental process.  The only difference with Autism is that we no longer have a generation that is familiar with the behaviors and can assist (i.e., grandparents), as they often have the same feelings of frustration we do.  So, we need to just accept it's going to be our reality, and get the job done.
  • Support:  Friends and family have often asked what they can do in order to help.  Just asking is great, because they are making an offer, and we feel a sympathetic soul is waiting for us.  Support can also come in the form of a respite, someone willing to step in for a few hours and let us as parents relax and unwind.  Autism is a 24/7 condition, and working that long puts a lot of stress on the body.  Having a chance to step back and relax for a few hours a week can really help recharge the batteries.  Unfortunately the most common form of "support" comes in nagging.  "You are not doing enough", is something I've heard quite a bit.  Never mind the impact and effort already put forth.  That is not support, it is criticism, and unless someone has a real basis of knowledge to make such a suggestion, it shouldn't be made.

So what I would like to see is more resources being made available to parents in helping their children.  This doesn't mean throwing tons of money out there for every parent to have three therapists per child, but rather help the parents become the therapists.  In the end, I see it as the only viable option in what is seen as a growing instance of Autism.  Let us as parents take charge and responsibility, because then we will feel more connected with our children and it will reduce our anxiety.

One great way to do that is through technology.  Already, hundreds of apps are showing up for the iPad, Android tablets, and smaller models like the iPod Touch.  The potential of incorporating a lot of my son's therapy into that type of device, which in turn makes it less expensive for the school (and us, in the end), means that over all the costs can be reduced.  My son gets the therapy he needs when he needs it without a specialist needing to be on hand 24/7.  It makes good business sense.

What are your thoughts?  What does Autism Awareness Month mean to you?  What would you like to see as the overall goal for the Autism community?