This is one of the harder days, even when it’s actually a good day. It’s a good day because it’s a weekend, it’s warming up outside, our family went out for a brunch at my favorite breakfast place, and my older son got to play with several of his friends, including one who has moved out of state but was visiting. It’s a bad day because of the cloudiness – in my head.

These images were taken just outside Las Vegas in February 2008. I thought of them because, in many ways, they visually represent the way my brain feels during these times.

These images were taken just outside Las Vegas in February 2008. I thought of them because, in many ways, they visually represent the way my brain feels during these times. (You can click to embiggen them.)

My husband asks me what’s wrong and I just start crying because my brain is so clouded and scattered that I actually don’t even know how to explain what’s wrong. What’s wrong is that I have all these little tasks I need to do, little organizing things that actually shouldn’t be that difficult but which require holding information in my head at one time, an ongoing kind of multi-tasking. And that makes the scatteredness even more scattered. And then I try to start one task, but in order to do it, I need to have already done another task. And so I back up to do that one, and that one is connected to another. And I try to explain what I need, but I can’t come up with the words. I need a card reader. So I can upload the photos from our trip. So I can empty the cards. But I have to back them up before I empty them in case my computer crashes. But backing them up means choosing one of the dozen hard drives to put it on. Which requires knowing which one has what because they’re all mixed up because of my old computer going dow and getting the new one and trying to make sure everything is backed up in at least two places because I’m paranoid about losing data, and with good reason. But I can’t think of the word “card reader.” So I can’t even explain that I’m looking for a card reader to my sympathetic husband trying to help while my brain is already five thoughts ahead on that hard drive thing, and I’m still trying to think of the word “card reader.” And then my husband picks it out of the pocket from the organizer hanging on the back of the door that I’ve been staring at for five minutes. Except it doesn’t have a cord. And I try to explain the cord was supposed to be on that thing. That thing behind him. THAT. That… that… the thing that holds those things. Books. The thing that holds books. The bookshelf. The cord. The cord was supposed to be on the bookshelf with the card reader that he just found. He goes and gets a similar cord that will work in his office. And the frustration I experience from not being able to come up with the words “card reader” and “bookshelf” then cause greater cloudiness. And I tell my husband it’s what I imagine having Alzheimer’s might be like, where you slip in and out of being able to think straight and clearly. You can’t remember basic words, and then your frustration overwhelms you, which of course only makes it worse. And then I’m trying to think. What do I do next? Do I start to upload the photos with the card reader with the cord I now have? Do I check on the other computer’s back-up to a hard drive that I started? Have I eaten recently? Am I hungry? Which hard drive will I back up the photos on? When will I ever get to assess what’s on which hard drives so that I can make sense of where everything is and feel secure that it’s all backed up? Do I need anything to drink? And then there is a stack of mail next to me to look through. And I have to tally up expenses from taxes. And I have to organize some books. And the baby needs to go to bed soon. And my 4-year-old keeps asking questions. And the last question is, “Mommy, why are you upset?” because I’m now crying because my brain is like a shattered mirror. I look into it to see what I need in my brain, but a couple shards have fallen away, and it’s incomplete, and some of it is distorted, and some tiny, tiny slivers so small I don’t notice them are gone, or I don’t notice until I need the word “bookshelf” and it’s not there.

Ironically, I nearly lost all of these images. I thought they had been uploaded, but they weren't. The card was erased, and I had to recover as many as I could with a recovery software I bought. I was able to recover the majority of them, in part due to having shot in RAW + JPG — for the first time in my life.

Ironically, I nearly lost all of these images. I thought they had been uploaded, but they weren’t. The card was erased, and I had to recover as many as I could with a recovery software I bought. I was able to recover the majority of them, in part due to having shot in RAW + JPG — for the first time in my life.

This is what it means to have my mental illness. It’s one part of what it means. There are other parts, and I suppose I may try to write about them when they happen or I think of them. This particular part is about the scatteredness, like piece of my thoughts are strewn across the floor in a cloudy room, and I can see bits and pieces and can’t fully make them out. It’s the downside of the mania. When the mania allows me to stay up writing for five hours, it’s great. But then there’s this part, where it splits my concentration into 15 pieces — just big enough to taunt me with thinking I can see the full picture, but just enough that I can’t keep them all in my head at once. It’s like my brain’s RAM is overextended. The hard drive works just fine, but the RAM is full and so I can’t actually access anything in the hard drive at all. And sometimes I can’t access the simple memory in RAM like “bookshelf.” Except, unlike a computer, I have the emotions to contend with as well, and they interfere with the memory issues because the emotions and overwhelmedness and frustration and anger at my brain and all the rest of that steals some of my cognitive energy as well.

My husband asks if I’ve taken my medication. I snap back that I have, but he says it’s a reasonable question, and it is. But it doesn’t always fix everything. And no, sleep or meditation or “taking a break” or whatever else doesn’t always fix it either. Sometimes you just have to wait it out. And I wonder as I write this, knowing that I’m going to put it on a blog and then put it on social media, whether explaining this sort of thing will hurt me professionally when I consider that editors may see it. But then I remember that I’ve already proven myself and my reliability to them, and it’s important for other people to know that it feels like this. And that a person can be motivated and hard-working and intelligent and successful and still have these things to reckon with. And the mental illness doesn’t make me more creative or more prolific. It hinders me. But I have figured out how to plan for the fact that these incidents happen even when I don’t know when they’ll happen. And that’s built into my workweek just like anything else is so that I can meet deadlines and do my work. (Except not to come up with ideas. Because that’s a faucet that never friggin’ turns off and part of my problem is too many ideas, all the time, floating around my head constantly, taunting me with all the things I could do and say and write if there were three or five or ten of me and if I could stand to be around those other me’s without all of us going truly crazy.) And I figure out what I can still do when it happens. I can’t remember the word “bookshelf” or the word “card reader,” and I can’t talk to my son, and I can’t tally up my expenses or know if I’m hungry or make the should-be-simple decision of what hard drive to put a backup of my photos on until I can organize them later. But I can write. And so I write.

Seven years later, this is still one of my favorite photo excursions. Funny enough, I nearly missed it. I had been on the wrong plane on the way there and ended up in LA instead.

Seven years later, this is still one of my favorite photo excursions. Funny enough, I nearly missed it. I had been on the wrong plane on the way there and ended up in LA instead.

And people wonder why I work so much. I’m a workaholic, no doubt, but working is sometimes all I can do. It’s one way to stay sane. If you’re an athlete and you haven’t worked out, and you feel that itch, that NEED to move and do what you do, and you HAVE to do it or you’ll go crazy, kind of like having a fix, then you know what I mean. That is what mania is sometimes like. Other times it’s something completely different, and it’s impossible to work. But often it’s a crowding in the head of 15 different tasks to be done, and 20 other thoughts, and you’re trying to ignore the ideas coming into your head, and the other things you can do or want to do or need to do, and you’re trying to remember things like it’s 20 minutes past your son’s bedtime and he needs a bath and are you hungry and do you need to eat? And if you’re tired reading this, or you’re backing up and trying to figure out the last thing I just said or you’re counting run-ons or clauses or conjunctions, then welcome to my head. This is 1,500 words, and I wrote it in 30 or something minutes. This is how the brain cells do things around here. Sometimes. Or a lot of times. Or it depends.

Learn. Repeat. Share.

1) Asperger’s is not a mental illness. It is a developmental disability.

2) Asperger’s is not associated with violence. At all. In any way. In fact, someone with Asperger’s is far *less* likely to commit a violent crime than someone without it.

3) A person who commits mass murder is not automatically/by default mentally ill (much as some might wish it so).

4) The mentally ill are many times more likely to be a victim of a violent crime than a perpetrator.

5) Drawing spurious armchair-diagnosing conclusions about a person’s mental health and his or her violent acts, without evidence, harms the mentally ill.

Added, per Liz Ditz‘s edits: Persons with developmental disabilities are more likely to be the VICTIM of a crime than a perpetrator. And drawing spurious armchair-diagnosing conclusions about a person’s developmental status and his or her violent acts harms those with developmental disabilities.

“All features that characterize Asperger’s syndrome can be found in varying degrees in normal population.” – Lorna Wing, 1981, a quote provided by Steve Silberman

***********************************************************

In addition to worrying about our children’s health and making the right decisions with regards to ear infections and vaccines and sleep and the such, we parents obviously have a pretty hefty responsibility in teaching our children how to think about the world and other people in it. That includes helping them understand, interact with and think about people who are different from them, including differences in physical health, mental health and developmental disabilities, such as having autism.

When tragedies occur, we must also help children process the event and provide them with the appropriate lenses through which to see the incident, if not understand it since such things are rarely truly “understood.” It is absolutely essential that in doing these two things, we do not allow our children to absorb inaccurate and damaging ideas, propagated by an irresponsible media machine and blogosphere as well as countless Internet comments, about links between those disabilities and such violent acts when no evidence exists for such a link.

Following the Newtown shootings, and now following this most recent shooting in Santa Barbara, the news has been contaminated with spurious connections between the shootings and the mental and/or developmental status of the shooter. The former can certainly be relevant when kept in context and when confirmed (rather than springing from dozens of online amateur armchair-diagnosing). The latter is irrelevant.

There were reports that Adam Lanza, the Newtown shooter, had Asperger’s, which no longer “officially” exists in the new DSM-5 but is considered on the spectrum of autism disorders. That diagnosis has since been legitimately questioned, but even if true, it is not relevant to his committing a crime. Now the Santa Barbara shooter has been supposedly labeled with Asperger’s by his family’s attorney, who then retracted the statement and then clarified in an LA Times story: “Astaire said Elliot had not been diagnosed with Asperger’s but the family suspected he was on the spectrum, and had been in therapy for years. He said he knew of no other mental illnesses, but Elliot truly had no friends, as he said in his videos and writings.”

1010592_495724187166238_435361941_nNote that the writer here erroneously wrote “no other mental illnesses,” as though Asperger’s were a mental illness. It’s not. Further, any news articles which speculate on Elliot Rodger’s mental health history would be violating the new guidelines issued by the Associated Press following the Newtown shooting. Such speculation, as that link explains, is further stigmatizing and damaging to those with mental illness, who happen to commit only about 4% of all violent crimes. That speculation is also damaging and stigmatizing to those with developmental disabilities, such as autism, when the developmental disorder is inappropriately linked to violent crimes.

As I wrote above and on my Facebook timeline, Asperger’s and/or autism spectrum disorders are NOT mental illnesses. They are also NOT linked to violence. Mental illness itself is NOT linked to violent crime in and of itself. That does not mean we should ignore the mental health status of mass shooters, nor does it mean we do not need better mental health services in this country (we do), but we should also pay attention to the only common denominator that IS evident in these incidents – that they are carried out with the same instruments. For example, the presence of a gun in the home greatly increases the risk of a violent death in that home. Hence my involvement with Parents Against Gun Violence.

Folks with much more knowledge and information that I have on this topic have already written about it at length, so I’ve provided below some essential reading when it comes to the intersection (or lack thereof) of mental illness, autism and violence. Emily Willingham, in particular, has written some of the best pieces on this, including this, just days before the Santa Barbara shooting:

“Evidence-based studies examining established commonalities among people who commit crimes like this can be enlightening, but wild speculation and retrospective diagnosing do nothing useful and can cause considerable harm to law-abiding people who carry any of these labels, whether autism, schizophrenia, bipolar disorder, or others that have been suggested. Autistic people are people, and like other people, some tiny percentage of them can engage in violent behaviors, although overall, they “almost never” target anyone outside their families, plan the violence, or use weapons. There is no single or even group of diagnoses that explains or predicts the horrific behavior of mass murderers. And some unsupported assumptions about autism–such as the continued canard that autistic people lack empathy (they do not)–help no one and certainly don’t guide us to way to prevent such tragedies.”

A similar piece about the same irresponsible study is by an autistic disability rights activist.

The same activist also discusses the inappropriateness of linking the Santa Barbara shooting with Asperger’s or autism.

Dr. Willingham discusses the inaccurate beliefs that autistics do not have empathy and that they are dangerous.

An excellent piece from a father about many of the misunderstandings about Asperger’s.

 

Facts

The disabled, including autistics, are more likely to be the victim of sexual assault than the non-disabled.

This study shows that those with autism spectrum disorders and/or obsessive compulsive disorder are less likely to commit a violent crime than typically developing individuals.

A statement from the Interagency Autism Coordinating Committee at the US Department of Health and Human Services: “There is no scientific evidence linking ASD with homicides or other violent crimes. In fact, studies of court records suggest that people with autism are less likely to engage in criminal behavior of any kind compared with the general population, and people with Asperger syndrome, specifically, are not convicted of crimes at higher rates than the general population (Ghaziuddin et al., 1991, Mouridsen et al., 2008, Mouridsen, 2012).”

This excellent fact sheet provides the evidence for the following statements:

  • The vast majority of people with mental illness are not violent.
  • The public is misinformed about the link between mental illness and violence.
  • Inaccurate beliefs about mental illness and violence lead to widespread stigma and discrimination
  • The link between mental illness and violence is promoted by the entertainment and news media.

Other facts available at the Twitter hashtag #autismfacts.

A version of this post also appears at Red Wine & Apple Sauce and on the Parents Against Gun Violence blog.