I have a child who has autism. I suppose he isn’t really a child, but a man. I’ll let you in on a secret–having a child with autism is not the end of the world. It is difficult, that’s for sure, but loving Our Kiddo and doing the best we can for him has been the easy part. He’s a happy guy and we are grateful, knowing our work with him has paid off for the most part. The really hard part of the whole autism experience has been many don’t understand and don’t WANT to understand autism–unless it fits in with their own version. Some have their own agendas and no interest in helping or understanding those of us on the autism front lines. Let me explain what I mean.
The “Refrigerator Mother” theory was the misguided notion of Bruno Bettelheim, one of the early autism “experts” who many believed had the answers for this very puzzling and misunderstood condition. The real tragedy of autism, the difficult part to grasp to those not familiar with this disability or its ramifications, is the blame assigned to the mothers and families of these children.
Bettelheim believed, to simplify the theory a bit, the reason certain young children have problems with communication and forming normal human attachments and relationships was the coldness and lack of nurturing of their own mothers. Their mothers, he believed, were cold and unable to love their child for a variety of reasons including resentment for having a child. A mother could seem perfectly nurturing and warm to the outsider, but if her child developed these autistic symptoms, she was really cold and unable to mother her child properly. We were dubbed, “Refrigerator Mothers” along the way. The theory has been disproved long ago but the fallout still lingers in many ways in the community at large, and surprisingly, in the autism community itself. Today, I’m coming out of my Frigidaire to tell you the real story of autism, the story most don’t know and many are reluctant to tell.
Of course, everyone claims to know Bettelheim was wrong and yet…. if we really did our homework, researched hard enough, sacrificed enough and tried more therapies our kids would be cured. Since they’re not cured, it’s our fault. As amazing as it sounds to the outsider, instead of rallying ‘round the young family in their time of need, it is considered just fine to question their motives or throw accusations of neglect at the parent of someone with autism. We are expected to take it…we have an imperfect child and these well-meaning people are just trying to help. Deep down, folks still think we caused our child’s autism. And it isn’t just a fluke or an isolated, flaky neighbor. It is professionals, parents of other people with autism and your own mother-in-law! Though it is easy to blame, it is nothing we did or did not do that caused our child’s problems; it is autism, and not poor parenting. When we need the reassurance of those we love and professionals we put our trust in, our parenting and love for our children are called into question. There is much estrangement in the families of those with autism because it is inconceivable to many, especially in the older generation; a disability such as this can just happen with no one understanding why. Much time and energy is still spent on blaming the parents, especially the mother.
The blame begins almost from the time we suspect something is wrong with our child. There is denial on our parts, quite normally, as we decide what to do. Someone, usually a family member, suggests we are not talking to our child enough or perhaps talking too much. The accusations of neglect swirl around us and we bring the child in for a first evaluation. A professional confirms we should be talking more/less and making the child do the communicating. Don’t give him what he wants until he TELLS you what he wants, we are told. This happened with our child and I can say with authority and all my experience in the autism community, it still happens today. Even professionals heap the blame on at first–we must be doing something to cause our child’s lack of speech or useful language or odd behaviors.
As we trundle along on the autism road, we try everything we can to help our child. At first, we want a cure, something to make our child “normal”. We try things that are standard; we try things that are not so standard. And we listen to everyone–our families, neighbors and the checkout girl–tell us what to do. We spend hours and days in a darkened bathroom because it echoes and it is supposed to help our child focus on us and communicating their needs. We do intensive one on one therapy. We take the child to speech therapy as many days a week as we can afford and he is taught sign language. Even though he has the ability to hear and make sounds we are told some communication is better than no communication. And we are questioned about the wisdom of sign language by well-meaning family members. We try other things, like vitamins and other supplements and spend money we don’t have on things we are not sure of. We eliminate dairy and wheat and eggs and fruit and meat and anything that tastes good and our child won’t eat anything we give him. When nothing seems to work, we are told we didn’t try the diet/vitamins/darkened bathroom long enough. And when our families call and ask “is he talking yet?” and we tell them “no”, we are blamed for not trying hard enough. And we are called selfish for having other children.
At a certain point, we forget about “normal”, and just want “better”. We fight with the school district. We fight with the therapists. We fight with physicians and insurance companies. We attend workshops, sib shops and autism support groups and discover our experiences are no different from other parents. We make lifelong friends and stop telling our families about our child’s treatment program. Every time autism is in the news, we hear about it, and have folders full of articles we have been emailed. We don’t argue anymore, we just nod our heads and leave the room as soon as possible. We deal with our child’s autism “melt downs” and challenging behaviors such as feces smearing and not sleeping through the night for days on end. Our siblings tell us our child seems good and having a kid with autism is no big deal, while their children in the next room talk about “retards” at the top of their lungs. If we say anything, it makes trouble, so we don’t and die a little inside. And we are blamed for giving up.
Our autism community is divided because no one knows what causes autism but everyone has their theories. And there are factions who believe their theory is the only correct one. If yours doesn’t jive with someone else’s, *they* must be wrong. The ones who believe autism has an environmental cause pooh-pooh those who believe it to be genetic. Those who are in the genetic camp distrust those who believe it is caused by vaccination injury……and so on and so on. We constantly question other parents motives and commitment to their child because of this lack of trust fostered, whether we realize it or not, by Dr. Bettelheim. We are blamed for our children’s autism because of him and that’s just not fair. Until we, the autism community, understand this, we will continue to have autism tragedies in the news when parents feel hopeless, not knowing where to turn or who to turn to without being judged. It is not the same in other disability communities. The friends I have who have children with Downs Syndrome have such a galvanized community–the same goes for the Cystic Fibrosis community or any number of other childhood disabilities and illnesses. We are always at each other’s throats and it the reason, I truly believe, we don’t have as many services and supports as the others.
My son is a charming, well-mannered person of whom we are very proud. There has been no miracle cure for him nor are there any crusaders to take up his cause. He isn’t making baskets for his high school’s basketball team and he is not suddenly speaking after some quirky therapy. We began interventions at 27 months—early for the 1980s—and he had intensive speech therapy, sensory therapy and behavior therapy and it’s been hard work to get him this far. He makes progress, day by day, month by month, and year by year and sometimes regresses. We try things and abandon what does not work and forge ahead, just as we have since his diagnosis. He has improved but he is not cured. He is a good person, a happy person with skills he worked very long to master. He’s proud of himself as well. We think that’s good enough for right now. No matter what other people think we should or should not have done.
Want some ice?
Autism awareness month is every month at our house!