Sweet talk
July 11, 2009 by Jill Cornfield
Filed under Health
Thank you for not sugar-coating autism, someone remarked recently.
You’re welcome. I write honestly about our son and our life — if I put a rosy spin on it I think that would diminish all of us. But I feel bad sometimes, like all I ever do is complain about Alex, complain about autism or its symptoms. I really can’t think how the neurodiversity crowd does it so acceptingly, so cheerfully. Embrace the differences, the spinning, stimming, screaming symptoms of autism, which sometimes wake you at 3 in the morning or force you to run full speed to catch your 11-year-old child before he’s too far away — and where he’ll continue to run until the distance between you is ungulfable, dangerous — and litter your floor and furniture with pretzel crumbs?
Photo courtesy of D Sharon Pruitt
It’s a big spectrum. So sometimes I think that the people who say they don’t want to change or cure their children are people whose kids are perhaps a little easier to communicate with than our son. Or perhaps their lives are more settled, a bit easier. Our work lives are uncertain these days, and our futures are, too. So there’s pressure everywhere we look, which makes it a little harder to simply absorb a child who is different and unusual into our rich, happy, secure-job-filled lives.
I’d describe our life as varied and textured but stressed, worried and short on sleep, filled with great food and family and interesting city experiences, but a bit thin on social life. We bring Alex to a number of gatherings but it’s increasingly harder as he gets older and bigger. We wonder how long we’ll all live together in the same apartment; we wonder how long before he comes to fewer family events?
I don’t think people who support neurodiversity are crazy or misguided — and I don’t want them to think that I am, either. If I can accept them, why can’t they accept me?
i understand i lost my job because it took 15 minutes toget jaimies hair brushed somedays another ten minutes to get josh to get in the car i feel bad for my youngest he is two his older brother and sister get the majority of attention i get to chase jaimie all over walmart josh likes to pretend to cry and yell at people and scream help jaimie when her needs arent met makes a scene almost as if i were to be hurting her the screams the kicking and crying because she cant tell me whats wrong its hard to have two kids on almost different levels of the spectrum one will talk to me the other almost looks through me and jeramiah my youngest caught in the middle
It’s simple: I’ve accepted it. I try my best to get him interventions, and I try to understand that he can’t really control many of his behaviors very well. I notice the slow progress. My husband, on the other hand, notices the positive things but is also driven nuts by the negative things. So one day he’s “look, he’s doing this now! cool!” or “he’s so sweet” and the next he’s “argh! he made another mess!” He does like the neurodiversity idea of acceptance and trying to find more treatments. I think the big thing that binds us is we don’t want the talk of ‘cures’ because it’s not really scientifically possible, and we don’t have enough research into the various treatments available.
For example know what the risk factors are for down syndrome, but the only cure for that is an abortion… not something I personally agree with (politically, I accept it). Also there are an awful lot of successful interventions for downs syndrome, because parents and people with downs syndrome painted a positive image, and pushed for resources/intervention. Unfortunately, the search for the cause led to a genetic test that leads people to abort down syndrome babies. We want a positive media rather than the exploitation of children’s negative traits for the purpose of sympathy. Often that backfires to “why should we spend money and time on these kids, they’ll never amount to anything.” We want “These people have challenges, and need therapy and support so they can function and be accepted in society, or at least function better than they would without supports,” rather than ‘omg it’s so horrible! cure it!’
Scientifically, since there are so many different kinds of autism, it’s a bit of a lost cause. Autism isn’t a disease, it’s a set of symptoms that describes a disorder. While people with autism have similarities, they are also extremely different. A cure will help only a small percentage (they’re closest to finding medication for Fragile X, for example). However many treatments help multiple different kinds of people with autism. However we lack sufficient peer reviewed research into what works, and what’s a waste of time, energy and money. Many desperate parents spend too much money on things that have no results, but they think the child’s natural development are results (or they push the biomedical interventions and neglect they had the resources to get one on one teaching for their kid, like a certain celebrity…)
I think it also depends on how supportive those around you are. While we didn’t have a whole lot of supports in helping him until recently, I have never received a lot of the negative attention that many with autistic children receive. I’m a bit lucky that my son is sensory seeking – he likes hugs, and figuring out an alternative to behaviors is easier. Though it takes him months or years to learn to use the alternative without being stopped from the negative behavior – recently, he appears to have replaced 2 years worth of hitting with hugging.
He still knocks things over and breaks things. but I tend to look at it like ‘if we don’t get it out of his way, then it’s partly our own fault.’ end of story. I’ve also learned it’s a waste of energy to get worked up over things like that. I tend to only lose my temper when I’m over tired. I think like that too. I am really hard to deal with when I don’t feel good. Maybe he doesn’t feel good, but we don’t know what’s causing him to feel that way. Hearing no and having someone hover over you all day can be stifling (though it’s often necessary). Understanding that there’s probably a reason, though I don’t always know what it is, helps. I get more frustrated trying to find the reason.
I know my son is a lot easier than many kids (he’s still nonverbal, has behaviors and is incontinent, though). However I know people with even more severe problems that are positive about it. I don’t chalk problems that are not autism to autism: his GI issues: disaccharidase deficiency, not autism, for example (the deficiency was diagnosed by a gastroenterologist after an EGD was performed). Most of his behaviors: Sensory Integration Dysfunction, not autism (he regressed after he learned to run – probably a sensory overload that he just wanted more and more and more of). These are things that may have a high rate of comorbidity in autistics, but they aren’t autism.
I also have a whole spectrum of kids. In addition to my son, I’ve an academically advanced ADHD daughter and a typical daughter that is often more of a handful than her siblings with diagnoses. It’s all about perspective.
Thanks for writing!
I’m sorry to hear you lost your job. Autism often requires parents to be so much more “together” — more organized, etc. — than parents of typical kids. Sometimes it just doesn’t seem fair. Don’t feel too bad for your youngest (yet). Kids often are very accepting of their situation, whatever it is. It’s all they know. When he gets older maybe you can find ways to give him the attention he needs.
Sometimes when Alex is doing something we really don’t like we try ignoring him so he doesn’t get attention for something we don’t want him to keep doing. It works, a little bit. The thing I like about that technique is it stops me from continuing to yell, or try to stop him when it really is impossible. Then we’ll try taking something away from him (a toy or his pretzels) – and that sometimes work. Verbal threats, reasoning don’t reach him at all.