During those first few years of Emma’s life, when we were so exhausted and everything was confusing, well-meaning people made pronouncements about Emma’s future. If I had to choose one emotion to describe my feelings during those early years, it would be terror… I was terrified. The kind of terror that keeps you up at night and then, once you’ve managed to lose yourself in the welcome relief of sleep, you dream about elevators swinging in midair, doors that open up to emptiness, running to places only to find you keep ending up where you began… and then… and then you wake up with a jolt of optimism, for a brief, few seconds you have forgotten your terror, only to have it come surging back, dispersing any wisps of residual optimism from days now gone… You’re left bereft, empty, alone and yes, grieving… Grieving for that time when terror wasn’t something you were intimate with…
What I wanted during those early years, what I wanted later when Emma grew beyond toddlerhood, when she entered adolescence, all I wanted was for someone, anyone to say – Don’t believe any of these people. They have no idea what they’re talking about. Don’t spend your time on the internet researching autism. Don’t listen to organizations with Autism in their title, but that have few or no Autistic people occupying prominent positions in their organization. Don’t believe any of those people who talk about “recovery” and liken your daughter’s neurology to disease or buy into therapies whose main goal is to make your daughter indistinguishable from her non Autistic peers. Reject ALL of that. Being able to speak isn’t the only way to communicate. An Autism diagnosis isn’t a metaphoric nail in a coffin.
I imagine those years of terror and how different our lives would have been had I met some of the people I now know. People I have met on the internet, through their blogs, at conferences such as AutCom and the ICI Conference in Syracuse. Conferences where I left feeling elated and euphoric because I witnessed all that was possible and not all that wasn’t. How can we move beyond the current conveyor belt of fear that only serves to pad the pockets of Autism businesses run and created by non Autistic people, who do not seek out the active involvement of those very people they insist they are dedicated to help? How do we dispense hope and what is possible amidst the maelström of deficit thinking? How do we care for families new to all of this, those families whose children will be greatly affected by their parent’s terror?
We have to give eye-witness accounts of what is possible. We must have resources available to families that will counter the predominantly negative views of autism. Resources that do not condemn the parent or the child. Resources that do not encourage terror, but offer hope and possibility. Ideally I would have been given the list of books I have on my “Resources” page and actual copies of these four books: Autism and Representation Edited by Mark Osteen, Autism and The Myth of the Person Alone Edited by Douglas Biklen, Inventing the Feeble Mind: A History of Mental Retardation in the United States by James W. Trent Jr. and Representing Autism by Stuart Murray.
Parents need support so they have the energy, patience and optimism to give their child the support and encouragement they need. Therapists, professionals, educators, experts who are making a living working in the field of Autism must understand the importance of offering hope. Hope based in possibility and reality. No one is served by being terrified. The only people who will be adversely affected if we stop the terror surrounding autism are those whose businesses thrive on such beliefs. And to all those businesses – I say – Good riddance.
This is so important. Families need to hear honest, true voices. Thank you.
Like yours, Lori. Honest, true voices like yours! ❤
nail on the head, az. i am with u and no longer afraid. keep churning out the truths. thank you. hopeful b
All of this. ALL OF IT! Thank you!
I am glad I found you (wait, did I say that already, lol) the first I knew when my daughter was diagnosed was that all the “experts” were wrong. They didn’t see her as I see her. I am glad there are more people that feel that way and if I can offer a bit of the hope you are offering, I would be so happy. Love your blog.
Thank you so much! The more of us who are writing, blogging, talking about this, the better!
Well done to you for once again being the person you wish you had when Emma was younger.
Thank you Nisha!
YES! YES! YES! I agree! I love it!
Yes..God yes. The only thing I am scared of these days is that I am missing something. That I am not understanding her needs or communication attempts and missing an opportunity to help. Every time I get frustrated, I realize I misunderstood her flap, her requests (which to me were indirect, but in hind sight make sense), etc. I know I need to cut myself some slack, but I feel like I wasted so much time trying to change her and make her behave when I should have been listening to her.
Ah yes, I do the same… But like you, try not to beat myself up in the process. Where did we ever learn that being human (making mistakes) was not okay? I hear you and feel tremendous compassion and understanding, but do not always give myself the same benefit…
What a great post! Thank you for the book titles. There are so many books about autism out there, it is hard to sort the wheat from the chaff, so if someone else tells me about some wheat, I’m all ears (sorry for the terrible pun)!
And offering hope…would make such a difference. I think many professionals are so fixed in the idea of autism spectrum DISORDER that they forget the rest. They forget that this is a human being, with needs, wants, desires, dreams, not just a collection of impairments. This attitude needs to change.
And for the record, my maiden name was…Hope. 😀
Ironic or appropriate?
Love that! Those four books were essential and the beginning of my complete change in thinking. They laid the foundation for reading blogs and books written by Autistic people. Hope you find them as helpful as I have!