Wednesday, December 31, 2014

I am Nat's ghostwriter

This piece by Susan Senator (centre), author of Making Peace With Autism and the Autism Mom's Survival Guide (for Dad's too!) touched me. Susan always writes with great honesty and insight about raising her son Nat (left). Here she writes about her role in speaking for Nat, who has autism and limited speech. The truth of this line hit me: “I notice how the norm for most people in our family is to ignore Nat.” Susan describes how a child's inability to communicate will leave him isolated, even within the family, as an adult. And it's not because siblings and other family members are mean! I don't think parents of younger kids foresee this. I didn't. Much food for thought. Thanks Susan! Louise

By Susan Senator

Nat’s going home now. It’s always a blue-tinged moment for me when he leaves. I never fail to wonder if he is doing what he really wants in life. Is Self-Determination an attainable goal for someone like him? When Autistic Self-Advocacy Network (ASAN) says something like, “Nothing About Us Without Us!” can that include Nat? What if I am the person who speaks up for him the most? Am I then to be included in that “us?” I hope so.

I know I can speak for caregivers — the ones who really, truly care for and about their autistic loved ones, not the ones who phone it in or worse — when I say that we deserve a welcome at that table. And I do feel welcomed by the autistic self-advocates, and I think that’s how it should be. I wish their language could be amended to reflect the fact that people who have the challenges Nat faces really depend on others to speak for them. Some things about him have to happen without him. I wish it were not so, because I want him to be the author of his life. But he always has a ghostwriter, mostly me.

I don’t know how Nat feels about this reality. Is he used to not doing a lot of things for himself, by himself? Does this bother him? Or is he accepting of it? Maybe both. I guess everyone’s different in how much they accept of their inabilities. Anyway, I try so hard to talk to him, to include him in our conversations, but he still is talked about, talked over. Others are far worse than me in this regard. I’ve seen so many well-intentioned people ask me what he’d like to drink. To them, I am that intertwined with Nat’s presence. They think I know. This Christmas it was very natural for me to answer, “I don’t know, you’d have to ask him,” completely without anger. It came out naturally; I knew Nat would answer. How does he feel about these kinds of situations? I hope he’s proud that I just steer people to him, more than pissed off that I have to do that.

I notice how the norm for most people in our family is to ignore Nat. His brothers do not even think to include him in the simplest of activities, like looking at stuff on their laptops together. I wish it were different and yet this is how it has to be. Their lives, their decisions have to be their own. I know that if I were to ask them to include Nat they would, but would that be good for them? As it is they have had their lives changed greatly by having Nat with them — in good and bad ways. I cannot decide things for them without them. It feels like it is crossing a line to do that. Don Meyer, director of the Sibling Support Project, told me in an interview that you have to let the siblings have their own existences, let them do what they need, their lives are hard enough. That there are so many questions in their minds, fears for the future both named and unnamed, that they wrestle with in regard to Nat, that for me to then step into their consciousness and give them tasks, basically give them the message that the thing they are doing is not nice — would be an invasion of an important boundary. It’s not that they’re being mean. It’s that they are being themselves. I never let them be mean. But this is a gray area that now that they are 22 and 16 they must navigate themselves. They have to come to it themselves and the more they are allowed to be who they are, the more likely they are to come to Nat in the future and open their arms to him.

I try hard to let the three of them determine for themselves who they are and what they want to do with their lives. But they do need my guidance. They cannot be allowed to be mean. Is not including Nat mean, or is it merely what they do right now?

As for Nat, not being able to speak for himself much is one of Nat’s greatest challenges. He is frequently passive or unable to determine what he wants, and so it is a complete conundrum to help him in this regard. Helping him not be passive — the only way to do that is to sabotage things, make him so frustrated that he has to ask for them. It feels cruel and in the end, it doesn’t really help. It’s an ABA-ish solution, one where you may end up helping but the means of doing so are questionable.

You can’t force someone to move past their disability. You have to accept their limitations as much as they need to. You have to give help, and they have to accept it, but you also have to not help sometimes. Sometimes you also have to step back and let things go on in an unsatisfying, imperfect way. I don’t like that. And so, letting him go home Sunday evenings in this murky set of circumstances feels bad to me, like it does when people basically ignore Nat. In the end I have to hope that what we are doing or not doing for Nat is what he would want. Or at least what is okay with him.

Susan Senator is the mother of three sons, the oldest of whom has autism. She is an author and disability advocate and her published work can be found at


Thank you, Susan, for sharing what many of us feel and experience in our families. Our daughter is 22 and only quite recently began to include her 26 year old brother with severe disabilities in her life. Now, she skypes and calls as often as she can. She facebooks him and involves her boyfriend as well. Throughout high school, though, she ignored him. In university once, she wept, saying "I resent him when you go running to him. I know he doesn't deserve it, but I can't help it." In our family experience, it took adulthood and moving out of our home to forge the ties that bind between brother and sister.

Oh, thank you so much for writing this out, Susan -- and for writing so honestly. I, too, have two sons who are younger than my daughter Sophie who is nonverbal and severely developmentally disabled. What Don Meyer said is so very interesting, and your own questioning of its ambiguities is really helpful to me. I think this is an important beginning to a needed and sustained conversation that those of us with multiple children need to have. I am comforted and feel less alone -- so thank you! And thank you, Louise, posting this!

Thank you for sharing Donna and Elizabeth! This piece really resonated with me, and helped me understand our own family's experience. When my two bio kids, one with disability, were young they were inseparable. I just assumed this would continue as they grew up, but there was a falling away, especially during the teen years. Their lives were on such different trajectories and the communication barrier was harder to surmount. I think Don is very right in suggesting that we don't try to mandate our children's relationships. I am hopeful that if we support our kids in having their own lives, that they may be more likely to rekindle ties when they are more mature.

The flipside is that sometimes NT siblings don't like each other -- and, as adults, don't make much effort to include each other on their lives.

So if it's perfectly acceptable for an adult kid to be pretty "meh" about a HEALTHY sibling (say, send a birthday card & see each other for family Xmas + Easter), why isn't it equally acceptable to do the same to a sibling who just happens to have SN?

There are quite a few people in my family who have disabilities (my dad's blind, my nephew's an Aspie, three of my uncles would likely have been diagnosed as on the spectrum had they been born 50 yrs later, all sorts of mental illnesses) -- I'm closer to some than others (some w/disabilities, some not). Heck, the running joke in my immediate family is that my dad loves my Aspie nephew WAY more than me and my sister (read: dad is a train-obsessed engineer, nephew is a train-obsessed 6 yo) -- and, well, it's terrific! Mom, sis and I are no longer dragged out to the Transportation Museum weekly (they have free social skills classes for train-obsessed kids!!) , not on train-themed road trips, Nephew No longer talks trains to sis or his siblings, because he now has train-obsessed friends who are WAY more knowledgeable about trains. It's a win win win thing!!