Ever since Em was first diagnosed I have looked to others to tell me what was best for her. I have read countless opinions. I have read hundreds of articles written by self-appointed Autism experts, educators and therapists. I have listened to organizations, I have consulted doctors, neurologists and developmental pediatricians. Emma has had quantitative EEGs, hearing tests, vision tests, colonoscopies, endoscopies, x-rays, and more hospital visits than any child her age should have to endure. She has been prodded, poked, examined, questioned and discussed. She has had more “professionals” come and go in her short life than I have in my entire 52 years.
A year ago I began meeting Autistic adults and what they were saying and describing first hand wasn’t what all those experts, doctors, educators and therapists had been telling me. In fact what Autistics were telling me was often in direct opposition to what all those other people said. The more I listened to what Autistics said and how they experienced their childhoods and life now as adults, the more I saw how wrong most of the professionals were. It’s not that any of the Autistic people tried to predict what my daughter would be like as an adult, or that I came away believing I’d just met an older version of my daughter, but I’ve gained a clearer picture of autism and I am not as afraid as I once was. As a side note, I have yet to meet a single Autistic adult who has assured me my daughter would be just like them, quite the opposite in fact. Each and every person I’ve personally been in contact with has made a point of saying they are not representative of any Autistic child.
When I went to the Autcom Conference in Maryland last fall I met a great many older Autistic adults. People who are in their 40’s and 50’s, some had been institutionalized, others lived in group homes, some lived with their aging parents, others lived independently, but all were Autistic and while it was surprising to meet so many (the hidden Autistic adults that our society knows almost nothing about) it was a relief too because the fear I had and to a lesser degree still have about autism falls away the more time I spend with those who are Autistic.
My fear is about the unknown. My greatest fears are those I create in my mind. I have to remind myself of this on an almost daily basis. I have tremendous fear. I have always been fearful. Long before I had children or got married I have lived with fear. Fear of failure, fear of success, fear of relationships, fear of rejection, fear of abandonment, fear of being hurt, fear of hurting others, fear of saying the wrong thing, fear of life, fear of being. You name it and I can figure out a way to fear it. I have mornings when I wake up and feel fear like a second skin shrouding my body and mind. There are days I cannot shake it. There are days when the best I can do is get up and just put one foot in front of the other. There are days when I cannot even acknowledge how scared I am. A good day is when I keep doing the next thing that needs to get done and not say or do anything hurtful to anyone who crosses my path. Those are the days when the image of myself is that of being covered in a thick cloak. I keep my head down, keep to myself and do my best to not cause others pain.
Then there are the days when even that is too challenging a task. Anger is almost always the result of tremendous, debilitating fear. This is just one reason why I so vehemently object to the way in which autism is depicted in the general population. Just about everything that is currently written by non-Autistic people regarding autism is fear based and increases fear. And where there is fear, anger is not far behind. Fear and anger cause many to behave in ways they wouldn’t, were they not feeling terrified and/or enraged. Fight or flight. I do both, sometimes within minutes of each other. Neither is particularly helpful.
I know I still have a tendency to look to the “next thing” that will help my daughter. I know this is what I have a tendency to do. I am trying to trust myself and her more. I am trying to remember that I don’t always know what will help and, as it turns out, neither does anyone else, but I can make sensible, informed decisions. I am trying to accept that no one can predict with absolute knowledge what will occur in the future. I am trying to parent my children with respect for who they are, what their interests are and not what they may or may not become. I am doing my best to be present, to enjoy the moments of joy. When I go off into future, fearful thinking, I try to gently pull myself back to the present without admonishment and judgment, but rather lovingly and with kindness for my own faltering, uneven progress.
Em – 2002