Who are the real experts on autism? Child Psychiatrists/Psychologists? Special-Needs Teachers? National speakers? Behavioral Specialists? Therapeutic Support Specialists?
As a parent raising a child with autism, I am always looking for solutions that will help improve my son’s mental and physical condition, lifestyle and educational development. I have worked with various agencies, organizations, psychiatrists, psychologists, doctors and so on. However, I have to say the most helpful and useful information, for me, always seems to come from other parents raising children similar to mine.
In my opinion, these parents are the “real autism experts”. They are the ones who live with autism 24/7, have been through various “trial and error” efforts when it comes to medications, therapies, schools, public activities, etc.
Don’t get me wrong, there are some in the medical professions that can offer helpful information and solutions; however, in my experience, they don’t live with a child on the spectrum and don’t really understand what it is families living with an individual on the autism spectrum experience. If they don’t understand what you experience, how can they know that their advice applies to the whole situation? Each family in this situation represents a unique set of circumstances that the “book answer” does not always apply. In my experience, some of the most useful information comes from those who “have lived it”.
I am not saying to “ditch” your current medical consultants or cancel your any autism services you are receiving, I am saying that the solutions you are looking can possibly come from a parent, someone like you; someone who does not have a degree or license. It is common to think that only professionals in the industry can help, and then a sense of guilt may come about if you don’t strive to make an appointment with every professional or expert is out there.
I speak to many parents who are currently raising children on the spectrum and ones that now have grown adults on the spectrum. Unfortunately, I hear one particular story from every parent I speak to, this is the one that no one wants to talk about. The story of how the parents are disrespected and mistreated by the very individuals and organizations that are supposed to be helping them and their child. A lot of us parents are treated as though we are the “biggest idiots” and that we cannot possibly know what is best for our children since we do not have a “formal education” when it comes to Autism. We should sit with our “little hands in our little laps”, smile and nod, and do exactly as we are told by the “experts”. In addition, we are not to “complain” or “question” anything; if we do we are “biting the hand that feeds”. What a bunch of crap. I wish I was making this up; the countless stories of how many of us are disrespected by schools, clinicians, agencies and other organizations is absolutely disgusting.
Please remember, the real autism experts are the parents. They live, eat, breath and experience autism, not just Monday – Friday, but 7 days a week, 24 hours a day; holidays, sick days, etc. We are given children that we are not “trained” or formally “educated” about; yet we are the ones responsible for their health, lifestyle, education and medical care. Parents of individuals on the autism spectrum deserve far more respect and support then they currently receive, they are certainly the “real autism experts”.