Author's note: I am fully aware that I may be opening myself up to criticism from a great many. I may be stirring the pot. However, I believe so strongly in this - that it's time we set aside the petty differences and work together - that I'm putting this out there anyway. Here it is. I hope that someone listens. I hope we can bridge some gaps and erase those lines in the sand.
I've never considered myself on one side or another. I see myself as a member of the autism community. I'm not particularly on the parents side or the self-advocates side. In fact, if we want to get down to it, the only side I'm on is my boy's, but I'll be on the side of what's right in an effort to make the world a better place for him and his community.
To that extent, I've not really been placed into any particular group, either, but that's okay, too. I'm not sure that my perspective runs so counter to yours or anyone else's necessarily. I try to be Sweden, but more active and willing to step in when things need to get done.
You see, I've been reading a lot the past few days vilifying parents for both standing up for Kelli Stapleton and using this moment to push some type of political agenda. As a parent that's done neither - and who has run across many other parents who have done neither as well - I feel the need to explain this in hopes of bridging this chasm that really need not exist within our community.
On the first issue - Kelli Stapleton. I have not read any of the more mainstream bloggers post in an effort to advocate that Kelli have a free pass on her crime. I think that I can speak for the vast majority of us by saying that she absolutely deserves whatever punishment our criminal justice system sees fit to deliver. Killing your autistic child cannot - and should not - lessen the severity of your crime. Murder (or attempted murder) is still a crime. There is no excuse for what she did.
(And on that same note, anytime I read someone who says that a parent was justified in the actual crime - killing or harming their child - I am just as disgusted as you are. I just haven't seen very many people who make that assertion.)
However, I think you misunderstand when parents say they sympathize. You see, we don't sympathize with what she did. That was wrong. It was a crime. What we sympathize with is that level of exhaustion and desperation. And no, it is not the fault of an autistic child or loved one when a parent or caregiver reaches any level of desperation. The fact of the matter is that it happens to the best of us.
Hell, it happens to typical parents, too. Typical parents go over the edge frequently in the early days of new parenthood - that all too familiar time that we all remember when caring for your child is an around-the-clock job. How many of you who are parents can remember a time in the early days of your child's life when you just cried because you were overwhelmed? Or maybe you snapped at a spouse or significant other? You did it because you were at the end of your rope. Out of those people, there is a contingent that snaps and does something awful to their baby. This is why shaken baby syndrome has become so familiar that there are public service campaigns in existence to remind people to never shake a baby.
Well, raising an autistic child can be overwhelming, too. It seems like an endless litany of phone calls, meetings, therapy and doctor visits. There is always another fight to wage, another person who doesn't understand, and another agency or insurance company looking to cut off our kids' lifelines. And it's not our kids' fault, but we parents get exhausted for the struggle. Many times, it seems as if the whole world is against my son, and I know that - as a parent - that affects me deeply. I want nothing but exactly what he needs and wants.
There have been times that I have felt that desperation. The times when I'm crying and screaming into the phone trying to convince an insurer to not cut off my son's therapy because he needs it to do things like swallow his food safely (because I live in a state that allows that). Or times when I'm having to convince a teacher or therapist to work with my son's quirks and challenges rather than see them as something to be "broken" from him. There are times that I want to scream and cry and cut myself off from the world. There are days that I feel like the sun won't shine again.
And yes, we deal with behavioral (I consider what looks like "aggression" to be communication via behavior) issues, too, but really that's not his fault. I do feel frustration and sadness when I see my boy struggle, though. I'm a parent. I can't help it. Any parent will surely agree that you feel deeply for your child and their bad days will be your bad days.
With that, I can see how desperation or depression or bipolar disorder or any number of mental illnesses that can strike parents caring for a special needs child might bring someone past the point of rational thought. Again, not an excuse - just an explanation. An explanation for why something may have happened, but not an acceptable excuse that gives someone a pass.
Among all of this, I have never laid a finger on my child's head, nor have any of the parents I have known - now save one for Kelli - because that has always seemed beyond comprehension. Again, I haven't tripped over that edge. Most parents don't. The ones who do are in the wrong.
And this brings us to our second point - that autism parents are using this situation to further an agenda, to make a political statement or - the most insulting reason I've heard - to get blog hits (definitely not a concern with mine...I'm not really a power player blogger). Really, this is a fallacy, and when you look at what most parents are requesting you'll see why. What we want is solutions. We have seen far too many of our own - and yes, those who harm their autistic children are autism parents, too...they are ones of us - harm their children and a pervasive theme seems to creep forward; these parents hit a breaking point. They may have had a lifetime of struggles to get their kids what they need. They hit a point where the fight has gotten to be too much. I believe a great many suffer from depression. Some of the symptoms of depression include thoughts of hopelessness and suicide. I think that absolutely sums up what some parents seem to demonstrate as they reach that breaking point. It seems like rational thought escapes them as they make the worst decision they ever could make - to harm their child. In the same way that we would not call a person evil who acts in a manner that is consistent with their disability or mental illness, so I believe that we can't call a parent evil who harms their child in the midst of a psychotic break. Wrong? Deserving of punishment? Made a very bad choice? You bet. Evil? Not so much.
Again, it's not because they are justified in harming their child because their child is disabled, but it is because I firmly believe parents at this stage are suffering from mental illness.
And so we must examine how to prevent the next Issy Stapleton from becoming a victim. But how? Well, we need to look at the autism parent and caregiver population and divide them into two groups - those who harm their children and those who don't. If we assume that all parents reach that desperation state every now and again, we must consider what keeps the parents who don't hurt their children from doing so while others carry it out.
Again, I think it goes to mental health. For whatever reason, that parent's brain chemistry has a different threshold for atypical mental health than the rest of us. Perhaps their threshold for "snapping" is lower. There is something that science has yet to explain about the way the mind works and what makes some of us act on dangerous impulses while the rest go about our days.
So, if we are going to think about solutions, there are several places where the problem of parents who harm their children can be addressed. For starters, we can all advocate for increased services for autistics, thus hopefully preventing these parents from feeling so desperate and hopeless in their efforts to get the best for their children. But - as we all know - that won't catch everyone who might harm their child. Some people will still feel like its not enough.
That brings us to a solution that I favor - increased access to mental health services for entire families, not just those with special needs children. Most insurance policies limit mental health services. Some don't cover them at all. Increased access to mental health services - both through insurance mandates and increased support to state agencies providing mental health services, and through encouraged expansion of counseling services at non-profits and religious organizations - can help to both identify and provide support to struggling families. For these parents who are struggling to cope, perhaps that access to counseling would help them move to a place of acceptance and greater ability to cope with the challenges of raising an autistic child. If it does not, counselors, psychologists, and psychiatrists are required to report cases in which they believe a patient will harm another person, thus being a second set of eyes to monitor the well-being of that special needs child.
Certainly, this would be good for autistics in other ways, too. I have heard from many adult autistics who struggle with depression or suicidal thoughts. Increased access to mental health services might help autistics who are unhappy with themselves cope with some of the emotional issues they may have faced in their lives.
Finally, there are people - like Sunday Stilwell of Adventures in Extreme Parenting - who advocate for an expanded national safe haven law to allow parents of special needs children to surrender their children to authorities in a way that keeps them safe from prosecution, much like the newborn safe haven laws currently on the books. While a last resort, a widely known (and the key is getting the word out so that everyone knows about it) and accepted law would potentially save the lives of those children who might otherwise have been victims.
(And yes, I'm aware that Michigan may have a law like that on the books, but again we're talking about prevention. Just because Kelli didn't use this service - if it existed in her state - is no reason to say it doesn't work and wouldn't work for future cases.)
These aren't political agendas; these are practical ways to save the lives of future innocents, potentially even those beyond the confines of the autism community. Instead of crying politics at parents, what I would love is for autistic and ally writers to join forces with us on these issues for the good of autistics and families everywhere. After all, the solution should be to create stronger, more stable family and home situations for autistics. Autistic children - like any children - will surely thrive best if they are at home, raised by parents and caregivers that support them and can cope with challenges in a healthy way.
Surely we can all agree on these points.
This needs to not be about politics. This isn't even about Kelli or Issy Stapleton in particular. This is about the ever-growing list of autistic victims and what we can do to stop that list from growing by even one more name.
Unfortunately, while we mourn for the life that was stolen from Issy and you focus the attention to the vilification of her mother, we still have a system that is potentially creating more Kelli Stapletons. We have the lives of more Issy Stapletons potentially at risk. We cannot focus our efforts there. We have to focus our efforts on the ones that have yet to be victims - the ones we can save. Anger and vitriol does nothing to save lives.
And I say this because I refuse to believe that there are so many evil autism parents out there. I believe that there many autism parents at the end of their ropes, at risk for mental illness, who are struggling each day. It is their children who are the victims. We need to help parents and caregivers out if we hope to prevent the abuse and murder.
So please - please - instead of starting a crusade against autism parents, hear us out for what we are trying to do and help us in this task. We want nothing more than to prevent this from ever happening again. And yes, that takes services. It takes legislation. It takes supporting parents. It takes supporting parents so that they can be people who support and understand autistics - namely their children.
Don't make this an us vs. them issue. Let's bridge this gap and work together as we always should do and should have done. Join us. Make this not about anger, but about creating a safer community for all autistics, one family at a time. Let's work together to find and promote solutions so that none of us ever have to write about another victim ever again.