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
Emma's Hope Book 
The perspective of autism professionals, and most of the mainstream writing on the topic, is so lacking that for many years, I didn’t even begin to recognize autism in myself from what was written about it. It really is almost the diametrical opposite of many of the ways that it’s often described by professionals, parents, and outsiders. Only in stumbling upon the writing of other autistic people did I begin to see an accurate representation of my experience.
((((❤)))) It is so hard to find the right words to say to you right now. I guess I am not alone, as there has not been the usual lively chatter of those who love you. Oh, the monster fear! We all must fight it, and it is continually bred in us to sell us any product, theory, or agenda. You have learned to cut through that, and trust yourself, and realize you are a mother, and a good one. As for internal, self made fear, I only know that for me it is best to look it straight in the eye, have gratitude, give love, laugh, and play the hand that is dealt the best I can. Believe in yourself and your vision of the future, and much of it will happen. Fear can be a self fulfilling prophecy. We all have the profane and divine in us, but, in spite of your fear and challenges, what you comtinue to share with us, the way you move the conversation, is…divine. Trust that bright light in you. ❤
Thank you Chou Chou. Just thank you…
I have heard this said so many times, particularly by women. If NTs were “diagnosed” with a set, mostly negative, criteria aimed primarily toward men I imagine it would be the same.
You are sooo awesome, Ariane. The foundation you and Richard have provided for Emma, is full of love and enrichment. You both know her the best because you have taken the time to observe and listen to her through her body language, movement and many other avenues. Have you made mistakes…stand in line behind the rest of us! She is still a little girl, taking in the world as she allows herself to explore it in a safe way. Her imagination is so neat and love how she “plays” as in the seats on her airplane.
I applaud you for trusting in assisted typing so she can further express her thoughts and add to your enlightenment. Because of this, is why Jenn is today. Never in our wildest dreams or dare to dream, she would or could accomplish what she has done.
Emma will become who Emma wants to become because you and Richard believe totally in who she is and will encourage this!
Thank you Kendall, really appreciate your words of support.
Well…..I think you have just put down in written words how I feel when I stop doing all those breathing,trusting, meditation exercises I have learned over the years I have been a mother! Your writing is always beautifully descriptive and today is no different. Fear, the inability to control, is raw and will grab me around my throat I when I am the least prepared. Most of us run from the feeling, into some pretty stupid stuff at times. I have made some therapy choices for Emma out of that fear.
I don’t know why you wrote this today, if something prompted this or it was on a list of possible topics. Emma and I send you and Emma hugs.
((((Paige & Emma)))) Meditation, sitting still, breathing, these are the things I do and they bring me a moment, maybe several moments or even a full day’s reprieve. I’m grateful for that and for the reminder that others must do these things too.
I fear the greyish realities as well.
One video that has helped me stay focused was one that I saw on wimp.com. If you google “Wimp.com, Eric Thomas, How Bad” it’ll come up.
It inspires me to keep pushing even when I feel unsure.
Hang in there. As an adult on the Spectrum, life can seem daunting but the truth is, it can be for anyone. Life is hard. Life is scary – but it’s also amazing and full of so much potential for victories no matter how big or small.
Gretchen, I just love that you wrote, “Life is scary – but it’s also amazing and full of so much potential for victories no matter how big or small.” Yes! Yes! Yes! Exactly. 😀
Ariane… I just absolutely and completely adore you! That’s all…
((((Leah)))) 💕