Friday, January 02, 2009

New Year, New Hopes: Autism at the Cusp of Discovery, Acceptance, and Advancement

This past year has been one of anxiety and frustration for me.  No, I'm not talking about the Economy, Politics, or Elections, but rather the life my family has been leading since my son was diagnosed with Autism.  Since then I have looked for "cures" that don't exist, treatments that are within my price range, and general ideas on how to best serve my son.  Every which way I had turned was met with frustration and distrust as I learned more about Autism and its cause.  

So this year I have high hopes for my son, and this is why: 

1.  Autism Covered by Insurance:  This year the Utah Legislature is considering a bill that will mandate autism coverage by health insurance until the child is 5 years old.  While this would only mean one year of assistance, it is at least something to be excited about. Whether or not it will pass is another question all together, but it is at least a step in the right direction.  It also makes sense, as the University of Utah is one of the leaders in Autism research.  

2.  The Cause is all but Confirmed:  In spite of the drivel spouted by celebrities with little to no schooling, neuropsychologists have determined that Autism is in fact caused by increased neuro-pathways in the brain.  Does this mean it can or should be cured?  That's a philosophical question I will leave to others.  But it does mean that Autism should no longer be considered an environmental circumstance, or the fault of getting much needed vaccinations.  Instead it is a condition that can be identified medically, and therefore treated as such.  No longer will children with Autism be considered poorly-behaved children that were neglected by their parents.

3.  Public Awareness is Increased:  Though there are still a lot of myths about autism out there, general awareness is on the increase.  Most people have at least heard about autism, candidates have promised to make it a priority, and major news outlets (such as NPR) have dedicated whole news spots to the condition.  The bad news is that most of the attention has been in the wrong place (i.e., vaccinations as the cause), but the good news is that more research time is being spent on the condition!  That means more time spent in developing better learning models, better instructions for parents and teachers, and over all more understanding behind the condition brings more peace of mind to parents.  

For those of us who are living with the condition, whether we have it or have a family member who does, these are exciting times to be alive.  Gone are the days of cages and restrains in chairs.  Gone are the jeers and persecutions that come from peers that ridicule out of ignorance.  

Though there still are judgmental people who criticize parents for their child's behavior, once they find out the child is autistic I have found that they are more understanding.  I am no longer afraid to go to certain restaurants out of fear for my son and the stares he would receive.  Instead I have a growing list of restaurants where good experiences have been had with my son.  It also gives me a chance to clarify the cause of autism in order to dispel the many myths and outright frauds that have been claimed as the cause of Autism.  

So I look to 2009 as the year of acceptance of Autism and those with the condition.  What do I hope to see come out of the new year?  

1.  Resources for Parents and Teachers:  It's impossible for the existing treatment infrastructure to handle the growing diagnoses for Autism.  Instead, the resources need to be given to those care-givers that have the most interaction with their children.  I expect that this year will be the year in which Psychologists, both Educational and Neuro-psychologists release materials for parents to use, and the existing infrastructure will no longer provide treatment to the patient, but educate the care-givers on how to administer treatment with regular appointments to assess progress.  Think of it as homeschooling, but well regulated and monitored by professionals.  Ultimately it will save the family money, while also helping that family feel in control.  

2.  Myths, falsehoods, and criminally negligent information will be squashed.  Too many parents are lost in the world of uncertainty concerning their child, and that has lead to a rash of quackery and hocus-pocus that drains parents of their income while doing untold damage to the autistic child.  This year I have high hopes that these types of "treatments" are taken completely out of the equation, and exposed for the frauds they are.  It's a huge burden on medical and scientific research, as they need to take each claim with a grain of salt as they disprove them in order to finally free the autistic child from the grips of quacks and soothsayers.  

3.  Medical Insurance will be provided as assistance for parents of autistic children, which expands the existing infrastructure.  But instead of seeing a world where autistic children are taken from their parents and placed in special schools, I see parents and children in special schools, learning the necessary skills, and then set loose to continue to be a functional and loving family.  Regular checkups would keep track of the progress both the parents and their autistic child(ren) are making, while also providing additional support and encouragement.  I'm a firm believer in teaching a man to fish, instead of giving him the fish and placing the burden of fishing on someone else.  

4.  Finally, I would like to see 2009 be the age of acceptance for children with autism, and those parents that have a child that may occasionally have a melt down in public.  Instead of stares, criticisms, and outright chastisements for the child's behavior, I see people offering assistance if necessary, even if it is to the point of helping the parent to take their child out of the over-stimulating environment.  Gone will be the days of autistic children being banned from flights, and people praising the move as a way of safe-guarding themselves.  It's a huge hope, but one to which I constantly cling.

No comments: