Am I at ease with Autism?

I’m sure a lot of people out there are in the same situation as we are, and have tried many things, methods, and therapies to treat Autism in a child or a family member.  Autism Integral Intervention Model, Diets, Metabolic Studies, Allergies and Genetic Studies, Applied Behavior Analysis (ABA), Picture Exchange Communication System (PECS), the Hyperbaric Chamber, Vitamin Supplements, Auditory Integration Training, Rapid Prompting Method (RPM), Dolphin Assisted Therapy, etc., you name it. And when researching one particular treatment, we are only told about the one or maybe two cases that showed significant benefit, but we never hear about the other much bigger group that tried it but little or no improvement was observed, or even worse, that a regression occurred after the treatment. The sad situation we face is that a therapy or treatment is not a straight forward process, in which you do something and see the results, but instead a long process of therapy after therapy, and evaluation after evaluation, with any potential results not expected in the near future.  Also a treatment that worked on one person isn’t necessarily going to work on another, so no one can assure that it will work on your particular child or family member.

Then there is the financial aspect of taking these treatments.  It is true that you can’t put a monetary value to health, especially if you are referring to your own child, but let’s face it, none of the treatments are cheap and the majority of the methods or therapies are not covered by any health insurance because they are considered as “experimental treatment“.  According to Autism Action Partnership, the lifetime cost to support an individual with autism is greater than $3.2 million.

Eventually you make a decision of the treatment or a combination of treatments you want to pursue based on the information and resources you have.  In our case our son has been taking Speech and Occupational Therapy since he was 2, plus Psychological Therapy. We’ve tried the Autism Integral Intervention Model, Diets, Metabolic Studies and Treatment, Allergies and Genetic Studies and monitoring, ABA, PECS, Vitamin Supplements, the Auditory Integration Training, the RPM, and I’m sure I’m missing a couple more.  I have to say that some of them didn’t seem to cause any improvement at all, while others, in combination and added to his chronological development, seem to have help him significantly.  Our son is able to dress himself, he’s potty trained, he eat by himself, he can write his name and some other words like “ELMO”, he can draw, he plays pretend, uses his toys with meaning, he is an expert in the use of his iPad, and he can communicate through pictures and through spelling.  Some of this may seem simple tasks or everyday activities we take for granted on typical children, but when you have a child with Autism you learn to appreciate and understand the true value of the small things in life.  Following one of his drawings and a letter he spelled to his therapist, to give me on my birthday.

I am happy it is your birthday.  I am damn excited and happy I am already making a message. U R so awesome.  Glad I am your son. You are raising an intelligent man. Nice job. You have nice children. I have magical intelligent dad. I love you.

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I can’t be prouder and happier, and more thankful to God for all the accomplishments of my son.  But sometimes I wonder, have I’ve done enough?  When do you stop researching for new approaches to Autism?  Am I still providing the best possible environment and learning tools for him to continue reaching his full potential?  Am I too comfortable with the therapies and medical care we are providing him?  Am I at ease with Autism?

I believe we have to accept that Autism is part of our life and probably will be for the rest of it.  If we don’t accept it, we will not have the proper mental state in order to deal with Autism.  But we need to be careful not to become too pleased and comfortable with the “status-quo”. We need to do more.  I need to do more.  I want to help him more. I want him to be able to express more his feelings and his emotions.  I want him to be more independent with his personal care.  It hasn’t been easy, and I know it will not become any easier now that he is becoming a teenager.  But I want nothing but the best for him.  I want him to be happy.

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