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Friday, January 31, 2014 10:09:00 AM

Part 2: There is a prescription for Autism treatment and it needs to be followed.

 

First, a disclaimer:  I am not a doctor, lawyer, board certified behavior analyst or a person with a diagnosis of Autism Spectrum Disorder.  I am a parent, whose child was diagnosed with Autism at the age of 2 1/2.  At that time, my son had virtually no functional communication and he frequently engaged in violent and self-injurious behavior.  My son was given access to quality ABA therapy.  He is now 10, high functioning, verbal, and in a completely included 5th grade class performing at or above grade standards.  He plans on being a scientist.  Here is what I want you to know about ABA and Autism:

  1. All ABA is not equal.  It is imperative that you have access to quality ABA at today’s standards.
  2. There is a prescription for Autism treatment and it needs to be followed.

If you missed my explanation to number 1 you can find it here.

Okay, it’s time to take the gloves off and get real.  The first time someone told me my 3-year old needed 30-40 hours of ABA therapy for 2 or more years, I felt physically ill.  I didn’t even ask how much it was going to cost because I knew whatever it was, I didn’t have it.  Even when they told me my son might be eligible for funding, it didn’t solve my problems.  How on earth were we going to fit 30-40 yours of therapy a week in and do it for 2 or more years?  Eight years later, the only answer I have is, you just do it.  It’s what your child needs, so you just do it.

I don’t want to make it seem like it’s easy.  It isn’t.  But it is easier than not seeing your child make progress.

I don’t want to make it seem like all kids who get this amount of therapy make so much progress that they go to Ivy League schools on scholarships and have no problems…ever.  That is the worst kind of fairy tale.  All kids make different amounts of progress.  But, the research is in, it is clear.  When we give young children with ASD quality ABA therapy for 30-40 hours a week for 2 or more years, they will make progress.

Are you reading between the lines?  Are you seeing the hidden asterisks??  Let’s start with the part about “young children.” What does that mean?  In 2014, we know that means children under the age of 5.

Does that mean that if your child is 5 you are, pardon my language, screwed???  No, what it means is the research so far shows the outcomes are consistently better if there is early intervention.  But there simply hasn’t been enough research on older children.  So, if you have a 4-year-old and people are urging you to do something now, it’s because they KNOW there is substantive help available for your child.  You can’t afford to wait.  As a parent, I will tell you, if you have a child that is older than 5, fight hard for your child, get them this help.  Many parents are doing that and seeing tremendous improvements. Someday there will be research on older children to demonstrate those facts.

Next asterisk*** - 30-40 hours of QUALITY ABA therapy is not the same as 30-40 hours of watered-down ABA – read here if you have questions.

Moving on…Parents tell me all the time, “We did ABA. We had 15 hours a week, but it just didn’t seem to be helping.”  I want to cry when I hear this.  It isn’t bad parenting.  It is bad funding and someone lying by omission to a parent in need.  There are professionals who will tell parents that 15 hours of ABA is enough…when they know it isn’t, because it is their belief that the parent doesn’t have funding for more hours and has no other resources.  The parent has no idea of this truth and trusts that they are doing what is right for their child.  They upend their lives to implement the lesser hours and are heartsick when their child doesn’t make progress.  Sometimes the families discover the truth and make a transition to an appropriate intensity. Those parents fume with anger and mourn the lost time when their child could have been better.  They are luckier than the parents who simply give up, thinking that it just “didn’t work” for their child.  Again, the research is in, the prescription is clear: 30-40 hours a week; that is what has been shown time and again by reputable researchers to be effective. Would we ever give our children a half dose of antibiotic and hope for good results?  Would we allow a physician to knowingly give our child an ineffective dose of medicine and excuse them for “thinking we couldn’t afford” the effective dose?  No, we wouldn’t and we can’t allow that to happen anymore to our children with ASD.

In a future blog, I will talk about the myriads of ways that parents have solved the financial issue of ABA, but suffice it to say there are ways, there are resources, and it is possible.  If I could figure it out, believe me when I say, you can too!  Don’t settle for less than what your child needs.  Follow the research, give the right prescription.

And last but not least, let’s really talk about the marathon event of treating Autism.  “Two or more years” is enough to give anyone pause.  Well, I’m not going to stop being honest when we get to the hard part, that would be lame.  I tell parents to think of it like college.  It’s a 4-year commitment.  Some people can do it in 2 years, but that’s really rare.  Some can do it in 3.  Good for them.  Most people need 4 years to get a degree, and many people need a little longer.  ABA is very similar.  So I urge you to get a college mindset, think of it as a, gulp, 4-year commitment and be open to the idea that it could be different for your child.  Four years is a long time, I know.  You will find it goes by fast, especially once you begin to see progress. You will see progress if you follow the prescription like a road map that your life depends on!

Next time we’re going to take on FUNDING!  How in the world do people pay for ABA?  You might be surprised!