The Cost of Autism$$

Once Misha and I got the ball rolling getting Jackson tested through the San Andreas Regional Center, Early Start (at 18 months), Jackson received a diagnosis, a case worker and was in the system.  At that point, Jackson was “in” and would receive services free of charge to us until the age of 3.  When children with special needs turn 3 years of age, they transition into the responsibility of their local school district.  Since Jackson will turn 3 on May 26th, we are in communication with our district to discuss Jackson’s transition, have him assessed by the district and hold his IEP (Individual Education Program).  By law, Jackson must be in his new placement within the school district by his birthday.

Though I speak of Jackson’s minimal progress with his year and a half of behavioral therapy, I am so incredibly thankful to have received these services and support from amazing therapists.  Along with working with Jackson, they have taught me so much about working with and engaging Jackson.  This post is in no way a complaint or bashing of the gifts we have been given…FREE OF CHARGE.

Free of charge.  Early Start is funded through tax payer’s dollars, so I suppose we do contribute just like you.  Every now and then, we get in the mail a pink printout (not a bill) of the number of hours therapists have worked with Jackson.  The number of hours converts to a dollar amount of Jackson’s therapy tab.  The last pink invoice we received in November 2011 reported that all of Jackson’s therapy has amounted to $40,000!  Note, this was over 4 months ago, so by now, we’re easily at $50,000, and by the time Jackson exits Early Start, the cost of his therapies over a year and a half will most likely amount to $60,000.  I’m thinking of the thousands of autistic and other kids with special needs receiving these types of services.  Costly.  Costly.  If some kids really do need these services, then I am all for helping out the families and kids with special needs.  For some, this therapy helps immensely and huge strides are made, and I hear about success stories.  Wonderful, I love hearing those stories.  For Jackson, this therapy seemed to be a dead end (though of course small gains were made along the way, and in no way do I want to insult Jackson’s amazing therapy team).

One of my dad’s questions to our doctor at our meeting for Jackson back in February 2012 was, approximately how much will all of Jackson’s treatments cost for these next 2 years?  He estimated that between doctors visits, supplements, medications, and ongoing testing (mostly not covered by insurance), it would be about $20,000.  Jackson is priceless, so of course we are moving forward with his treatments, but $20,000 is a lot of money!

http://www.lymeinducedautism.com states, “How many [children] have an underlying infection like Lyme disease that is causing autistic symptoms?  Many physicians and studies now show it could be as high as 90%.”

Is it worth investing money on testing these kids for infections (Lyme Disese) early on (if they display autistic-like behaviors) before being directed to behavioral therapy?  Had our pediatrician understood the similar symptoms of Autism and Lyme Disease early on, when Jackson was 18 months, and suggested the IGenex blood test (or other similar test to spot infections), we could have gotten scientific answers early on and saved tax payers thousands of dollars.  Instead, we have used $50,000 in tax payers money, are now digging into our pockets to provide Jackson his current medical treatments, and have spent a year and a half of Jackson’s life doing behavioral therapy that his body/brain is not ready for.  Just thinking and wondering.

Again, so happy we are on the right path.  There isn’t anything I wouldn’t do for this boy:)

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