Finding Your Voice

You’re in a crowded room, surrounded by people who mean well, but maybe are seeing your situation from a perspective you disagree with. It can be easy to quietly smile and nod and remind yourself that it’s only for a few minutes, that these people don’t live your life, don’t know you, and are making assumptions about your situation based solely on their own experience. You can’t change anyone’s assumptions when you remain silent. You cannot educate by osmosis – as lovely as that would be.

When you have a child with a disability, finding your voice is important. Whether it is teachers, doctors, or other parents, you have to remember that you have something important to offer. You have a valid perspective. Should you take into account someone else’s experience? Of course. Should that experience change your mind? That all depends. There is research, differing philosophical view points, changes in technology, changes in what we know now about the body and mind that we didn’t know even as little as ten years ago.

Finding your voice, making it a strong voice, does not mean screaming over someone with a differing point of view. There is a lot of information out there, not all of it is good or scientifically valid. Research is key, understanding the science and the research that is out there, understanding the various methods of treatment, and participating in said research when you can (especially with programs like the IAN project). The questions we all have about autism have not yet been fully answered, but there are people working to change that. Nothing can be learned when all the voices are trying to be louder, more right, than each other.

Finding your voice, making it a strong voice, does mean not allowing yourself to be bullied by people who think that the methods of treatment or therapies you have chosen for your child are wrong. There is not a singular answer, one right way to work with autism. If you disagree with someone else’s choice, don’t be that bully either. You can point out the studies on that method if you feel you absolutely must, but don’t shout someone down for doing things differently. With our children it is all trial and error. What works well for one, will not work, or even make the symptoms worse, for another.

Whether it be with doctors, support groups, or even within your own family, if someone is suggesting a treatment you aren’t sure about, ask questions, ask for the research and then read it. Don’t be a passive participant in your child’s care. You know your child better than anyone else. Trust that. It is not rude to ask for the studies that back up a treatment option or a diet. Learn to do internet searches, to read scientific jargon. The information you need is out there, but a lot of times it is jumbled together with opinions on both sides, with testimonials on both sides, and it is up to you to learn how to sift through the information for what is important, for what relates to your own situation. Be active, be loud when you need to be, and be willing to listen to it all.

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