Light it up blue!

Autism awareness day begins on the evening of April 1 with the kick-off of the “Light it up blue” campaign and continues through April 2.  The entire month of April is Autism Awareness month, but April 1-2 is a really big deal.  Buildings and homes all over the world will change their light bulbs to blue to bring awareness to the autism spectrum disorders.  This is a world day – a moment when the countries of the world unite on getting the conversation going on an epidemic that has yet to have a known cause or cure.  What is autism?  Who is affected?  What is research finding out?  Does my child have autism?  What can I do? These are some of the questions that the campaign wishes to address.  So let’s get the conversation going.

 What is autism and who is affected? Autism is a communication and socialization disorder. Communication in a young child may be non-verbal or in disjointed speech patterns that make it difficult for others to gage what it is they are trying to tell you.  Their communication problems greatly restrict their ability to socialize and behaviors develop that seem . . . well, a bit odd.  Many parents feel their child lives in another world – which is a common, but false assumption.  They live in our world but have trouble dealing with the everyday activities that require them to interact.  A lot of these problems can be worked on and many overcome – but it takes time and miles and miles of patience and understanding. How many people are affected? Well, according to the Autism Society, approximately 1% of the population of children (ages 3-17) is on the autism spectrum. That boils down to 1 in 110 children (1 in 70 boys) affected by autism.  Presently, 1 -1.5 millionAmericans live with an autism spectrum disorder. It’s a pretty big deal . . .

 What is research finding out? There is research and then there is research.  Don’t fall for just any explanation.  Just because you live in a city doesn’t mean your child will be autistic anymore than living near the ocean.  No state is without autism, and for that matter, no district is without autism.  It’s not viral – you can’t catch it.  It’s not the parent’s fault – the old“refrigerator mother” hypothesis has thankfully gone the way of the dodo bird. 

There is a genetic component – but everything your body does is related to its genetics.  Genes are either turned on or turned off.  When it comes to brain function, again, genes are either turned on or off. One slight little mutation and a gene that was functioning fine last week is now no longer capable of activity. This leads to all sorts of problems in the body.  Is it any wonder that autism has a genetic component?  Basically, in autism the brain, (reason unknown), can not hook up the way it is suppose to.  Neurons, the communicating cells of the brain, are either linking up differently or not at all in the parts of the brain controlling communication and socialization.  Can it be fixed?  Maybe. Yep, I said maybe. 

The newest research is pointing toward the energy manufacturers of the cell – mitochondria.  Mitochondria make the energy currency used by all the cells in the body to perform their various jobs.  A child’s brain uses most of this currency in its development.  Not enough currency and things slow down or fall apart.  What caused the mutation in the mitochondrial genes? Unfortunately, that’s still a bit complicated.  Environmental factors such as toxins, viruses, inflammation, and allergies are the likely culprits.  Each of these has the ability to alter the function of the mitochondrial genes. Which one caused the autism in your child?  Unfortunately, the research has not found the pathway for each of these stressors and thus no test can be run to determine the exact cause for each individual child. The research though, has been amazing. Scientists all over the world are hunting, searching, testing hypotheses and the answers are slowly coming and with it the hope of treatment and cure.  Some day a child will be diagnosed and given an effective treatment that will degrade the autism and allow the child to develop normally . . . someday. But be careful for now, as false claims are strewn all over the Internet and the unsuspecting parent can find themselves taken by charlatans.  Make sure what you are reading comes from a research institute, medical journal, autism organization or a research university.     

 Does my child haveautism? 

The following list of autism symptoms can be found on the MayoClinic web page – a very trustworthy source.

Social skills

Fails to respond to his or her name

Has poor eye contact

Appears not to hear you at times

Resists cuddling and holding

Appears unaware of others' feelings

Seems to prefer playing alone — retreats into his or her "own world"

Language

Starts talking later than age 2, and has other developmental delays by 30 months

Loses previously acquired ability to say words or sentences

Doesn't make eye contact when making requests

Speaks with an abnormal tone or rhythm — may use a singsong voice or robot-like speech

Can't start a conversation or keep one going

May repeat words or phrases verbatim, but doesn't understand how to use them

Behavior

Performs repetitive movements, such as rocking, spinning or hand-flapping

Develops specific routines or rituals

Becomes disturbed at the slightest change in routines or rituals

Moves constantly

May be fascinated by parts of an object, such as the spinning wheels of a toy car

May be unusually sensitive to light, sound and touch and yet oblivious to pain

My son Matt had them all – every single one.  Matt was diagnosed way back in the 1980s when autism was still considered rare, a 1 in 10,000 chance.  I know that until Matt came along I had never even heard the autism. Figuring out what to do about it after the diagnosis was (and still is) the hardest thing my brain has ever had to contend with. There was no set game plan, no instructions, no assistance, and no one to lean on. Tackling autism and in doing so, watching my son emerge to be a confident, gentle, and intelligent young man, has been the most rewarding experience for me.  Whereas, it has not been an easy road, it has been an enlightening one - one I can look back on now and marvel upon.  Are you on this road?

 What can I do?

 So here it is, Autism Awareness Day and you ask yourself, “What can I do?”  If you’re a parent of an autistic child then you most assuredly know just how nice it would be if those around you knew what you were dealing with day-to-day.  Wouldn’t it be nice to know that you have the support of others?  I’m not talking about support groups. I’m talking about the people you see or speak with almost everyday.  Support groups are wonderful; you get to share your concerns with other parents and grandparents dealing with similar issues.  But wouldn’t it be nice if those you know, who do not have an autistic child, understood – really understood –what life is like for you and your child? Your assignment today is to start the conversation.  Quit waiting for others to ask you about autism and instead, start the conversation yourself by going to them. I wish I had.  My family knew Matt was autistic, but they really didn’t understand it much until I started to write.  As they read about my trials and tribulations and Matt’s determination and accomplishments, they finally became aware of what Matt and I had gone through for 20 some years. That lack of understanding all those years was my fault, not theirs.  I never just sat down and talked about it.  Then something wonderful happened - I started to write.  My sister, brothers, mother, and friends were in awe. They are now aware. They now see Matt much differently.  They see him as different –not less. 

 So be the light in the darkness. Do it for your child so that someday people all over the world, in every community, will have compassion, tolerance, and understanding of autism.  Your autistic child will grow up and someday, hopefully, live their adult life on their own. What better way to make sure they are treated respectfully later in their life, than to educate others about autism right now. Take the time this special day, this entire month, (oh heck, let’s just make it all year), to instruct others on how to communicate and interact with the autistic person.  Spread the word. Spread awareness.  Shine a light on autism – and make it blue!