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In February of 2009 we were told, "Your child has autism.”  And if you’ve ever heard those same words, “Welcome to My World.” 

This new world can be so overwhelming and terrifying but it doesn't have to be that way.  There is so much information out there on the web, in books, from other people, both good and bad.  The thing about autism I have learned is that every child is different, every family is different, and every treatment is different.  What has worked for some may not work for others; what worked for our family may not work for yours.

The fact is, there is no cure for autism and in all honesty, all your child wants from you is what any child—with or without a learning disorder—wants.  And what most children want is for his/her parents to do what they can with what they have, keep your family intact, love them, and celebrate every victory, no matter how small. 

Our son has been receiving Occupational Therapy, Physical Therapy, and Speech Therapy since he was 21 months old.  Until recently he has been non-verbal, only uttering vowel sounds and the occasional consonant.  But since we began ABA (Applied Behavioral Analysis) using a VB (Verbal Behavior) Approach, we are getting more and more communication and have finally heard the words, “Mommy,” “Daddy,” and “Anayna” (for his sister Alaina). He is mimicking songs he hears, copying characters actions on the TV, and completing two-step commands, such as, “Get the ball and bring it to mommy.”  That’s a huge step in the right direction.

I can't say we’ve tried everything because we haven't.  We just can't afford to try everything.  And personally, I am not ready to try things that do not have the data to show that it works.  The exception of that rule was trying the Gluten Free/Casein Free (GFCF) Diet.  And though we didn't see any difference in his behavior, we did learn he is intolerant to dairy and nuts.  Trying GFCF was not a financial burden on our family and if it worked, great; if it didn't, no harm was done. 

The tricky thing with autism is that since children are typically diagnosed at a younger age, their brains are absorbing information and learning all the time.  How do I know if that expensive treatment that I am trying is working or if it’s just something he would’ve started doing anyway?  Maybe it's because my son and I are still relatively new to this world of autism (only having been part of it this past year) that I am not willing to take chances on "alternative" treatments or therapies?  

I heard that some these experimental treatments and therapies have done wonders for some people with autism out there.  But I’ve also noticed those success stories are few and far between.  Because I have heard so many families talk about the things they tried that didn't work, I have just enough reservation to hold off and stick with the things that have factual data behind them.

There are no right or wrong answers because autism is personal.

We still choose to get our child vaccinated and will continue to do so.  That’s because we have not seen a correlation between his vaccines and his diagnosis.  But I know of other families that believe they can make that connection. I can see where these families are coming from, but I have a greater fear my child will get extremely ill from not being vaccinated.  And since he still can't express himself to tell me when he’s sick, what hurts, or how he feels, I am not prepared to take that chance.

If I could give advice to a family who has just recently been given the news that their child has autism, it would be this:

--Don't blame yourself or anyone else.  It is what it is.  You didn't make it happen. 

Now that your child has been diagnosed with autism, you can't change it.  But you can make it better.  Don't put all your time and energy in trying to figure out why.  Take that energy and figure out what you are going to do to make your child's life better.

--Find the assistance available in your state. 

In Georgia, it is Katie Beckett/Deeming Waiver (a form of Medicaid), get the Autism Speaks 100 Day Kit, and find a local support group (don't be afraid to tell your family and friends - you will need them - believe me). 

--Find out as much as you can about autism but don't believe everything you read as black and white. 

There are many shades of gray.  Attend seminars, workshops, and trainings.  Learn how to be a parent in this new world.  I would highly recommend attending a training course on ABA and VB.  You are your child's best teacher because you are with them more than anyone else.

--Give each therapy or treatment you are using time. 

Follow through with it because if you quit too soon because you aren't seeing progress as quickly as you would like, you may miss out on something that might ultimately work for your child. Autism is a unique world and our children who live in this world learn differently.  And that learning takes time.   That's why it is a developmental delay.

--Follow your gut.

If the therapy or therapist you are working with doesn't feel right, try someone or something else - you know your child.  Trust that.   

--Don't let experimental therapies drive your family into financial ruin.

There are a lot of "services" that claim they can cure your child or make all the difference in the world that are not covered by insurance or federal assistance.  If you can't afford it, don't stress over it.  Do what you can with what you have available.  What good does any of those therapies do if you can't afford your house, the gas to drive to therapy, or the food on your table?  Divorce rates among couples who have a special needs child are high.  Add to that financial stress, and the divorce rates get even higher.

--Take a deep breath, connect and communicate with your spouse and your other children. 

Also be sure to make time for yourself and to schedule breaks. 

--Celebrate all the accomplishments no matter how big or how small.

If you focus on those celebrations, it will help keep you going.

Kristin is the mother of two, Alaina, 17 and Joey, 3.

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