I got a text this weekend from a friend. She is a young adult "on the spectrum," as it were, and she had somewhat of a Facebook argument with another woman over a meme the lady posted about Autism. My friend didn't like the implication that autism is not a disability but simply a difference and made her opinion known. She wrote about the different issues children and adults can and often do have when they have an Autism Spectrum Disorder. She responded from her own experience, in all earnestness. In response, apparently, the original poster called her a "bitch" and wrote that autism isn't a serious issue and said people need to stop complaining about it.
I have such a depth of feeling about this. Its an internal conflict in a lot of ways, because technically, my daughter's bipolar and ADHD and my son's Autism and associated disorders most certainly will cause them difficulties neurotypical people don't have or ever have to think about. On the other hand, I think both of my children are capable of doing just about anything they set their minds to, and I refuse to let them use their issues as a crutch or an excuse. Just yesterday, my daughter remarked in passing that her brother couldn't keep himself from fighting because of his autism.
I told her, "I'm not sure I agree with that. Do you think he gets to just fight with people without consequences? I don't. I think he has to work harder than other people to control his behavior, but he doesn't get a free pass to just behave any old way he wants to, honey." She thought about this. "So its just like I get in trouble for fighting with Race Car Man even though I have bipolar?"
On one level, I think that a cure for autism isn't necessarily on the horizon. And no, for the record, I don't buy into Jenny McCarthy's assertion that her son has been "cured" of autism. I think there are a lot of therapies and treatments and foods and supplements that can help kids and adults with autism function better and more successfully, but we don't know enough yet about the causes of autism and the inner workings of the autistic brain to be able to have a cure. Should we be funding research for a cure? Absolutely. But at the same time, we need to be spending our time and our dollars making sure that we give kids with autism the skills they're going to need to live as adults with autism. We need to be cautious of the words we use around autism so that we are not being derogatory or having pejorative overtones about a community within our larger community. People with autism don't necessarily want to hear about the ways they are different -- they are looking for the ways they can fit in. And frankly, some of the characteristics they bear as a result of their autism are truly gifts.
I don't think you can look at someone like Temple Grandin, whose difference in executive functioning make it possible for her to understand animal behavior in a way that most neurotypicals can't begin to understand, and think of her autism as a 'disability.'
There are a lot of conflicting opinions in the autism community about the language that we use and the way we portray people who have autism. A lot of advocacy groups and adults living with autism are extremely opposed to the tactics of the group Autism Speaks. The opposition stems from a number of reasons, primarily because Autism Speaks doesn't include a large enough percentage of adults with autism in their executive leadership. Many parents and families of people with autism and many adults with autism also take issue with the way autism is portrayed by Autism Speaks. They feel personally denigrated by videos and messages that talk about how terrible life is for families of kids with autism, by descriptions of their more challenging behaviors and thoughts. There are hundreds of thousands of adults with autism living successful lives, managing careers and marriages and raising children.
There are two sides to every coin, and autism is no exception. The divisions within the autism community are understandable, impossible to ignore, and perhaps uncrossable. Because autism is a spectrum disorder with greatly ranging degrees of affect, everyone's experience will be different. Because no two people react to the same stimuli in the same way, one person's response to dealing with autism and their perception of how it impacts them will vary greatly from anothers.
I don't believe autism has ruined our lives, I just think autism has given us some challenges we might not otherwise face. But who am I to tell a mother whose marriage has failed and whose non-verbal child is a frequent eloper or who is physically violent that she's wrong if she feels differently than I? Just as I would want her to understand where I'm coming from, I sure as hell bet she wants me to walk a mile in her shoes, too. I also bet that there are times she wishes someone would find a cure right this fucking minute for the behaviors that make her life incredibly difficult and stressful.
We take issue when a mother with an autistic child kills her child and then takes her own life. We don't want the world to think that autism is this terrible, dark thing that can't be overcome. We, as parents, don't want anyone to look at our children and think these things about them. We want people to see the beauty and the strengths and the uniqueness in them. Or at least, I suppose that we do. But I don't know what the mother whose son was denied school placement was thinking. I can't speak for her at all. Clearly she was overwhelmed, probably under-supported, and desperate. The mother of the adult son with autism was said to have a very loving relationship with her son. What were her thoughts as she committed this terrible act? We will never know.
Parenting a child with autism or pediatric mental illness can be hard, terribly hard. For most of us it is NOT the end of the world. Having autism and learning to cope with a brain that is not wired to function in the typical world can be anywhere between 'okay' and 'devastating,' depending on the individual and their place on the spectrum and the support, resources and therapies available to them. Holding your bipolar child's needs close to your heart as you deal with them on the days they are unable to be loving or likable isn't very easy.
We can't forget the families of the severely autistic individuals who rely on lifelong care. As with any condition that renders a person unable to take care of their own basic needs, life becomes far more challenging and difficult, stressful and scary. But those things don't have to mean that the person with autism and their family don't also have love and joy and wonderful times together. The thing is, we can't deny that at least for some families, the good days are scarce and the bad days are the norm. Some people aren't as capable of handling that as others.
Is it just too pat to say "Life is what you make it" ? Life isn't fair, certainly. We are all born with different abilities, strengths and weaknesses. As humans we have the same rights, but we don't all have equal capabilities. We must acknowledge this basic fact and work upwards from there. My kids have stuff they've got to overcome, and sometimes that's really hard to cope with. But cope with we must. There's more than coping, though. We work to meet challenges and we celebrate our successes. We learn from the bad days and we are thankful for the days that are good. We cry, we rage, we beat our fists on the concrete, and then we get up and walk out the door with our hopes intact. Some of us, though, throw in the towel. Some of us don't see the up side. Their experience doesn't invalidate my own; nor mine theirs.
Both extremes and neither.
Can we live with that? I don't think we have a choice.