Thanks go out to Clay for always giving me something to think about and for providing a catalyst to write a piece.
A friend of mine, Clay, ran across a post in honor of Autism Awareness Month and has posted it at his blog and reflected on the mother’s attitude. Certainly, there are troubling paragraphs in the mother’s piece, this idea of “the instant emptiness in his eyes” and “I was determined to fix him”; they hurt to read, for obvious reasons. However, I think that Clay focusing only on the narrow where-she-was and not on where-she-is-now misses the larger picture, the important parts of the post and what we as a community can learn from each other.
That’s where the mother was; not where she is now. And to miss where she is now, with her son, is to miss the growth curve parents go through. And there are some steep growth curves for parents whose children have issues, whatever those issues may be. To deny that, to denigrate them because they took a little while to adjust, when they did adjust, is to compound the problems our community, society as a whole, faces.
Parents of newly diagnosed/identified children need good information and need scientifically-based interventions to foster functionality. Fostering functionality does not have as its intent to hammer in some unreal concept of normal, but to help as best as possible, in a way that honors the child’s personhood, the child reaching his full potential. And if there’s a speech delay, that means speech therapy. If there’s gross motor and fine motor issues, that means PT and OT. If there are social skills issues, to not help a child navigate those muddy waters is to make sure the child doesn’t achieve his full potential. Parents need support, need to see and interact with older autistics, so that they know potential pitfalls of various therapies, so that they can get a window into their child’s possible way of seeing the world. And, honestly, autistics need the parents, need the right and the opportunity to share, to be accepted and respected. We need each other.
Given this kind of networking opportunity, evidence-based information, and positive social support for autistic individuals and family members, how many would have to turn towards AoA, GenRes, TACA, and Autism Speaks and other groups that really don’t respect, appreciate, or accept autistics? I suspect far less.
My bright boy is two years older than this mother’s child, and there are obvious parallels in functional levels. We went through guardianship and SSI when he was 18. Bobby's certainly an adult, but he has a cognitive impairment; he can't spell more than a few words despite many long years of working at it, can't do double digit math. Today, we went to the SPCA to fill out the volunteer form so that he can volunteer one day a week as we work to see if some kind of employment will be possible for him in the future (something we’d arranged before I ever read this mother’s piece).
Instead of focusing on how she’s got it all wrong, that she sees her son incorrectly, sees the autism as an add on, not integral, one could stop and think that it is the accepted scientific/educational/medical policy to state person first language to emphasize humanity before disabilities/medical conditions/differences of ethnicity. It may be political correctness run amuck, but at its heart is an attempt at sensitivity. In fact, if one is going to signal out that this proves the mother has it all wrong, one should hone in on the fact that the mother later wrote, “Robby's autism became not a label, but who he was. He is life, re-interpreted.” This seems to imply that while she may have had a rocky road initially, she certainly has come to see her son’s autism differently. While the Peter Pan imagery may offend some, this mother’s love and acceptance now of her son is apparent: “Robby is a happy, silly, fun-loving boy.” This is later followed by her desire that he have “continued happiness - to be able to enjoy his hobbies (drawing, art) work a bit (he will soon start volunteering at the SPCA each week via his Easter Seals Kaleidoscope program) and to be surrounded by folks who care and love him.” All things, by the way, that I very much wish for my bright boy.
He is my son, my bright boy, and while I accept and celebrate that he is an adult, the truth is that he is an adult with a cognitive impairment that requires he have assistance. We work very hard to find a balance that allows him the opportunity for growth, to reach his potential. We work very hard to allow him as much autonomy as he is capable of, but it is my job as his parent and his legal guardian to stand between him and those who would take advantage of him. It is my job to make sure he is in a safe environment, he is happy, he is doing what he wants to do with his life.
I take my responsibilities seriously. It is a constant balancing act, and my husband and I regularly reevaluate our decisions. Our experiences as our son’s parents have paved the way for our parenting of our daughters. We didn’t have the steep learning curve that we did with Bobby; we didn’t have the struggle to learn about autism, understand it, or accept it. We’d already done the heavy lifting. I am not where I once was, and I suspect that many parents who’ve been around for a decade or more aren’t. Sure, AoA gives us daily reminders that not everyone gets off the pity party, not everyone decides to see the good, to learn, to grow, or hell, even to take a real good look at themselves and their loved ones and realize that there’s a great deal of us in our kids, that we are bappy (broad autism phenotype—it really is a spectrum!) folks ourselves, if not skirting over into autism itself. When we see ourselves in our children, if we have accepted ourselves and our issues, we have no choice but to mirror that with our children, to see them, issues and all, and to love them completely.
Yes, there are serious issues that parents of autistic children face; serious issues that autistics face, as well. Denying these struggles does no one, autistic individuals included, any good. Not every child will overcome the obstacles the world and their neurologies present them. All the acceptance and appreciation in the world will not take a severely impaired child with accompanying medical problems or cognitive impairments and render them independent adults. Not facing that is a tremendous disservice. It ignores the reality that my mother faces each day at her work as a nurse at the assisted living center, that my husband saw every day for two years when he worked as direct care staff there. It denies those individuals their reality, if we assert that there is some potential gone untapped if only someone had tried harder. Accepting people as valuable members of society for who they are means accepting their realities, their neurologies and issues. And then busting our asses to make sure that those who need 24 hour care get the very best care there is, that they are respected, protected and allowed as much autonomy as they are capable of.
There are real questions about how parents balance the need to protect their children from bullies and the harsher realities while still promoting autonomy. How do they display sensitivity to the integral part that autism plays in the child's identity while acknowledging that not everything about a person is due to autism? How do autistic adults provide feedback to parents to guide them so that the decisions parents make are made with an eye to the future self their child will be, so that harm is minimized?
I think it’s very unfortunate in a piece that could have focused on many things that instead there is a focus on the mother’s job; it’s even more a shame that her reference to college students working with her son is taken in such a way that it’s asserted to be a waste of time for all involved. There’s a dearth of information in the post itself that makes that an unjustified leap, and it’s a reversal of the refrigerator mother theory to assert, as Clay has that: “Little did she know that if she only had the right attitude, and the right information, she could have made the biggest difference in his life, could have helped him to achieve his full potential. But she had an important job, at a Supermarket Company!”
We have no way to know what particular evolutions the mother’s attitude or information have gone through, no way to assess whether she went to the woo side, and none to think if that she hadn’t worked, if she’d focused all her attention on her son, with just the right attitude, that he’d be at his full potential. In fact, we have no way to know that he hasn’t functioned as well as could be helped. And I would argue that making sure a child has IEPs in place and appropriate speech, OT, and PT are not an indicator of low expectations at all. They may very well signal high hopes and expectations that with the right accommodations, he could achieve his best.
Before Bobby was homeschooled after his stroke at age 9, I was in the school with him many days, working hard to help him get the accommodation and assistance he needed. After his stroke, I was with him all the time, providing all the attention and assistance possible. I assure you, if a mother’s undivided attention and the right attitude were all it took to make an individual fully capable of independence, my bright boy would have had it.
This assertion that it is her attitude, her job, that stood in the way is a huge slam to parents who love their children just as they are, accept that autism is a fundamental part of their neurology and only want the best for them, so work to help them understand the world while working to make the world understand them.
Be disappointed that some sixteen years ago, a mother wasn’t prepared for autism but do not condemn her now when she so clearly embraces her son and the integral part that autism plays in his life. Be disappointed that still parents enter into a diagnosis with inadequate resources, information, and support. Be disappointed that autism is still cast by many as teh ebeel that steals them away, that leaves emptiness behind. Be good and angry that there are organizations that foster these ideas, but give a mom who has evolved to see her son as happy and enthusiastic and who hopes for the best for him a break, or at least acknowledge that she's not where she once was.
If we are not free to admit where we once were and how we have grown as our children have taught us to see the world differently, then how will we move towards changing the world and making it a better place for all people, regardless of their issues? Admitting our mistakes and learning from them is a vital part of growth and development.