Last week I wrote a post, Autism “Experts” about how I used to attribute any action or sentence uttered by my daughter as evidence that whatever therapy or treatment we were employing at the time was “working.” It was my way of staving off the persistent fear that if we were not intimately involved in a constant barrage of therapies, she would make no progress or whatever progress she made would be less, than if we devoted every waking hour to constant involvement and interaction. Suddenly every waking moment became a moment we must engage, interact, teach and push for more.
We were told about the human brain and the small window when the brain’s plasticity is at its most optimal for learning. From the moment that diagnosis was handed to us, we felt we were in a race against time. Any time we sat down to read the newspaper or took ten minutes in our daughter’s presence to relax and just be in each other’s company without “working” with her was reason for guilt and the feeling that time was slipping away from us. The nagging worry, if only we did more than we already were, she would be better served, is one I remember well and can still feel the residual stress of.
I want to clarify a couple of things that perhaps were not entirely clear in last week’s post. I do not believe an autism diagnosis means we sit and do nothing to help our children, but I believe there must be a balance. What we did was detrimental to all involved and I do not encourage anyone to follow in our footsteps. All our hard work, the round the clock therapy, (more than 40 hours a week) the training, the evenings and weekends spent taking over once the therapists had gone home, did not ensure our child’s brain was rewired. She was not mainstreamed within a few years.
This idea, popularized by the book, Let me Hear Your Voice by Catherine Maurice was NOT our story. I do NOT recommend that book, in fact I urge parents to avoid it. It was the first one recommended to me by Emma’s ABA supervisor and it set us on a very painful road of discouragement and disappointment, but perhaps even more importantly and destructive, it put into play the belief that Emma’s neurology could and should be “fixed.” And it pushed us further away from any degree of acceptance and eventually embracing and yes, celebrating our daughter for the amazing, uniquely beautiful being that she is.
That early intervention is so often equated with ABA is worrisome to me. I hope this is changing. People suggest it is, but when my daughter was diagnosed it was a given. It was ABA or nothing. Agencies offered versions of ABA, but it was still ABA. My child was not helped by ABA. I would not have done it could I do it all over again. I’ve written about ABA before ‘here‘ and ‘here‘. I know many of you feel it has helped your child, many have written to me and described some version of ABA that bears no resemblance to the method used with my daughter. Evidently ABA has, in some cases, changed. The bottom line is this – Does it presume competence? Does it respect the child as a human being? Is this a method I would use on a child who was not Autistic?
What I would have done when my daughter was first diagnosed was OT. I would have enrolled her in gymnastics, trapeze school, swimming and I would have introduced her to a stencil board and AAC (Augmentative and Alternative Communication) devices. I would have begun using Proloquo2go and many of the terrific Grasshopper apps had we had iPads when Emma was diagnosed. And I would have begun working with Soma Mukhopadhyay. In an ideal world all of these things would be a given. All of these things would fall under “early intervention.” All of these things would be available to ALL families despite their level of income. These are the things that have proven to help my daughter. All children may not respond to the things she has responded to. But in an ideal world “services” would include an evaluation determining what things would help and a plan would be made.
In last week’s post I questioned those who are not Autistic and have little or no contact outside of a professional setting to those who are and yet call themselves “experts.” I was not referring to the many professionals who are intimately involved in the autism community (and by that I mean the community of people who are Autistic) who have dedicated themselves to helping our kids and us so that we can be, not only the best parents we can be, but also equipped with information that will help us help our children flourish. There are a great many of you out there, and to you I am incredibly grateful. To all those professionals in the field of autism who are not familiar with Autistic blogs, books or do not have have any Autistic people in your life who are friends and colleagues, please become familiar with Autistic people’s work so you can tell parents. Many parent’s first contact with anyone involved with autism, outside of their child, will be a therapist.
Please make sure parents know there is a growing population of adults who share our child’s neurology. Even if that means just giving us a list of blogs and books written by Autistic people. Ideally there would be programs in place that employed Autistic people, just as social workers, therapists, parent liaisons are employed. Autistic people who are interested in interacting with new parents and their newly diagnosed children would become a part of “Early Intervention.”
Ideally we would live in a society where we did not segregate those who were more profoundly affected by physical impairments and do not speak, so that all of us came into daily contact with those whose neurology was similar to our child’s as well as those with an array of impairments. Perhaps families with older kids who are farther along in the process would volunteer to reach out and be available to other families new to all of this. The point is that we could help each other more than is being currently done.
No family should feel they are alone, or feel the fear we felt or the terror and worry that dogged us every waking moment of those first years after my daughter’s diagnosis. Years we spent in a state of almost constant panic that we should be doing more, that if we didn’t we were losing time, that our daughter’s life depended on it and that anything less meant we were failing her.
No one, who is given a diagnosis of autism, should feel they are alone. None should feel less than or believe they are damaged or broken. No child should feel ostracized or that the way they process and view the world is “wrong” or “bad.” None should feel that because they are Autistic, they need to hide or feel abandoned by society. No one should be made to feel ashamed for the way they were born. No one. This is what I want to see change. This is why I keep writing. All of us can work together to create a world that embraces one another and encourages, rather than condemns. Each of us can play a small part in making this happen, by increasing our awareness, by accepting difference, by working together.
Emma's Hope Book 