Autism is not the monster

Posted on by

Postpartum depression is. And it doesn’t act alone.

by Emily Willingham  

[Trigger warnings: details of suicide and infanticide]

Last week, the mother of a 10-month-old strapped her baby onto her body and leapt from an eighth-floor window. She died, but the child survived, almost uninjured. According to reports, the mother, a lawyer, had written a lengthy suicide note. She had expressed fear that her son had autism or cerebral palsy and that it was her fault, based on his having fallen a couple of times while she wasn’t looking. It’s not the first time autism has appeared in an attempted suicide or murder, and while postpartum depression or psychosis are suggested to have been the primary actor in this latest event, the fixation of parental anxiety on autism and maternal blame was a supporting character.

To state the obvious, having a baby changes things. I’m not talking about the unexpected terror that can come with suddenly realizing that you’ve got this life in your hands, one that you’ll now fight helplessly, without control, for the rest of your life to nurture and maintain. I’m talking about the changes in you that happen once you’ve grunted and strained and torn and struggled to push that little human out or underwent major surgery to do so. I’m talking about the hormone crashes. The mental instability. I’m talking about the veil of darkness that can fall across what everyone assumes is a joyous, celebratory event. I’m talking about postpartum depression.

Postpartum depression isn’t just the blahs you feel in the aftermath of a big life change. It’s not just anxiety about this new person or exhaustion after too many sleepless nights, that endless series of timeless darkness and bleary days that no one quite explains to you before you have an infant. It goes far, far deeper than that. I know because I’ve had three children. With the first two, sure, there were those nights when my husband had to take over to keep me from fleeing to Mexico, never to be seen again. But with our third, it was different. I became one of the 10 or 20 (possibly far more) of every 100 mothers to experience postpartum depression, a persistent, intractable trough of hopelessness, a place where the mind refuses to let in any light. Of these, a small percentage can descend into postpartum psychosis, especially without treatment, and about 10% of women with postpartum psychosis will commit suicide or infanticide.

My third son and I had struggles-because of neurological issues, he couldn’t breastfeed and I pumped every two hours, around the clock, to make sure he got breastmilk. We stayed up all night together for days-weeks-on end. I was obsessed with SIDS, convinced that every time I awoke, I would find him dead in his crib. I thought he was going to die, that he wouldn’t live past the age of six months. I would look into his eyes in the darkness, only a nightlight illuminating what was near-madness for me as I sobbed and moaned, and we’d stare at each other. I don’t know what he was thinking, but at the time, I thought he was telling me that yes, he was going to die, and soon. For reasons that are likely rather clear, my mind kept playing, over and over, through long, wakeful hours, the Cat Stevens lines, “Oh very young, what will you leave us this time? You’re only dancing on this earth for a short while.”

He is now six years old. I’m no longer in the midst of that irrational anxiety and depressive trough or the recipient of imaginary infant telepathy. We both got through it, but not with the help of any modern interventions. I asked my OB about it at my 6-week checkup, very concerned about my state, but she didn’t seem to take it seriously. I’m still not sure why-my calm presentation of it? My education level? The fact that she, for some reason, had decided that I am just anxious about everything (I’m not, in spite of my three very specific phobias) and thus could be dismissed? Was it that I didn’t mention my family history of depression and my own lifelong awareness of it in myself, risk factors for the postpartum version? Indeed, I’ve had three children, and no medical practitioner has ever, in a postpartum follow-up, evaluated or asked about my emotional state.

At any rate, rebuffed by my OB upon my first-ever request for psychological help, I took matters into my own hands and forced myself to do things that would stabilize my mental health, things I do to this day: walking outside with Dickensian intensity. Eating food so spicy it makes me cry-and pop off a huge bolus of endorphins. Eating chocolate. Writing, my main form of catharsis. Doing a little work in my professional field. Being blunt with my partner about needing a lot of support and help and getting it. Thank the deities that it worked. That was as near the edge of intractable darkness as I’ve ever been.

At the time I was experiencing this bottomless trough, falling and falling, we already had known for two years that our oldest son is autistic. And from the time our third son was born, I was concerned about autism. I was. I watched him even after I recovered from my postpartum depression, monitoring him for signs of delay of any kind, ready to step in with some early intervention. He had many delays. But by our third son’s birth, we’d had five years of living with our autistic son, one of our greatest joys, and I didn’t have a fear of autism. I had a fear of SIDS. And because SIDS is deadly, because I’d written quite a few things about SIDS, because I’d purposely sought out information about preventing SIDS in the infancies of each of our sons, my obsession in the midst of my postpartum depression was…SIDS. Not autism.

The morbid obsessions that strike during a deep mood trough can be unpredictable, but when you look at them in context, they can make a whole lot of sense from the perspective of mental illness. We fixate on what is before us, on what we know, on what we’ve inculcated as our deepest fears, our greatest anxieties. To this day, when I do have a rare burst of anxiety, I know it not because I feel it consciously but because I dream about my greatest personal (and completely irrational) fears: roaches, hurling, or the Grand Canyon. It’s strange, I know, but the brain is an enigma that sometimes serves itself up only in metaphorical bits. It’s up to us and our networks to apply whatever insight we have to put it all together.

Lacking that insight can be fatal. In 2010, a woman killed her 6-month-old son by smothering him. She did so, she said, because she was afraid that he was showing signs of autism. According to medical professionals with personal experience with the boy, Rylan, he seemed to have been developing typically. The mother, the boy’s father reported, had been depressed and was taking Zoloft. The day before she killed her son-after a series of failed attempts-she had said to her husband that he’d be better off without her and their son.

The mother, reports say, thought she had postpartum depression and commented to friends about it before she killed her infant. The DA involved in the case elected not to try her because of her ongoing mental state. According to reports, she was obsessed with the notion that her son was autistic and that his autism would destroy her life, her marriage, her finances, and her fun. Her husband filed for divorce within days of their son’s murder, and he has also filed a wrongful death suit. She was aware enough of her actions to have, according to reports, hidden the blankets she ultimately used to suffocate the child on her final attempt. The story is horrific.

The mother’s experience prior to having the baby included two years working as a counselor at a children’s hospital, where she had encountered children with autism. I do not know what the attitudes of the professionals or parents at the hospital were about autism. What I do know is that if she had paid attention to any one of the thousands of fear-mongering news media reports about autism, she’d’ve been terrified if, in her mind, her son were showing signs of it. I know that if she’d paid any attention at all to what some organizations that purport to help autistic people say about it, she’d’ve been fatalistic at the prospect.

I also know that if she’d read any of the verbiage on the Internet about “toxic” children or their toxic mothers, “monsters” whose “real selves” were “stolen” from their parents, or the frequent refrain of blaming the mother, she’d be terrified. Stories purporting to describe the horrific financial burdens of autism. Stories focusing on the horrific toll autism reportedly takes on marriages and families. Stories with the angle that autism destroys lives. Stories from parents, mostly mothers, expressing shame at what they thought they’d done to cause autism, driven by misinformation and anecdote. And sometimes, the stories that excuse parents who murder their autistic children because … well, autism, you know?

Autism is not a monster. Autistic people are not monsters whose bodies and minds have been robbed of a “real” person. They are living, breathing individuals with enormous potential who happen to have a developmental disorder that causes sometimes-significant delays. The characterizations of autistic people as being universally aggressive, nonspeaking children in mid-meltdown belies the spectrum of humanity, behaviors, ages, and developmental achievements that autistic people represent. Yet we have this culture of autism as a terrible monster and a long history of blaming mothers for it. Were autism and a culture of maternal blame for these mothers what SIDS was for me, a thief in the night, the obsessions that haunted me in my mental abyss? The ones that made me sure that my son wouldn’t survive infancy, that had me receiving messages from a 6-week-old infant to that effect?

Among those shadows of darkness that threaten our minds during depression, one will loom largest. It will become the greatest fear, the one that drives your mind into even deeper, more impenetrable shadow. But what that greatest fear will become isn’t a simple matter of the choices of your own disabled, lightless mind. There’s a world out there that reinforces fear, hammers anxiety into you, one sharp, pointed sensationalized detail at a time. In the world of these mothers, that fear took the shape of autism, and they didn’t build that monster by themselves.

——————————————————————————-

In the autism community, we work hard to let people know that autism isn’t a deadly specter. Please take the time to understand autism better through autistic people themselves, all of whom are different, sure, but not … and never … less.

[A version of this post appeared previously at The Biology Files. Homepage/thumbnail image credit, dark cave: via TUBS at Wikimedia Commons, Share Alike License. Post image: Emily Willingham.]

——————————————————————————-

Resources for postpartum depression

Resources for autism

8 thoughts on “Autism is not the monster”

  1. The history of psychology shows us that, at one time or another, mothers have been blamed for schizophrenia, depression, and every other organic mental health problem you can name.

  2. Not surprising, but disappointing, that autism causes guilt in mothers and blame from outsiders.

  3. Thank you for this great post. I was moved, informed and given proper pause for thought. I’m a newcomer to this blog (via twitter) but I’ll take time to look around more!

  4. From the linked news report:

    “She said that she would give her life to bring his health back and that she hated herself for the first time in her life. She believed that her son’s falls might have brought about a serious medical condition, perhaps cerebral palsy or autism, which would have “lifelong consequences.”

    It was irrational and a potential sign of psychosis or paranoid ideation that a person would believe a series of falls could cause cerebral palsy or autism. However, there is no indication in this story that this women had any unrealistic fears of the actual conditions of cerebral palsy or autism other than serious lifelong medical conditions, which is a reasonable assessment of the conditions as understood in the medical profession for over 70 years now.

    Postpartum depression first and foremost, per the American Psychological Association is a mental disorder that has an organic base in hormonal imbalance.

    http://www.apa.org/pi/women/programs/depression/postpartum.aspx

    Psychosis is an organic based imbalanced state of mind where anything can be the source of paranoid ideology from aliens, to government spies, to forks and knives, to anything that the mind is capable of creating in an organically imbalanced psychotic break from reality.

    Autism was only represented for what is, in this report, as a lifelong serious medical condition along with cerebral palsy.

    It is most often mental illness, and as you provide here statistics specific to post partum depression/psychosis that is associated with infanticide and filicide, as both actions are among the highest of natural aversions to a healthy human state of mind.

    It is a horrible thing that nature can, in part, bring upon an individual. And it is part of why people do show compassion to these tragedies when they occur, as it could befall anyone hitting nature’s more unfortunate dials of lottery.

    Not hard to understand if one does do the research on Post Partum depression/psychosis. And not everyone is on an even playing field as having an intellect to rationalize themselves out of a psychosis.

    Perhaps the salt that digs deepest in the wound of these horrible events is continuing vilification of some of these human beings that have fallen to a very dark side of human nature. Neither salt for the victims or the killer who is dead, but those loved ones that survive that must be reminded of the horrible events and the vilification of their once mentally healthy loved ones, and those that have died at the hands of the dark side of human nature. I cannot thing of many realities worse than this in life to live with.

    As far as I can see it is a demonstration of a lack of human empathy and compassion, not to express sympathy and shared pain for tragedies like this. It is only horrifying and no one’s fault other than the killer and nature alone with the positive and negative that is human, that one can never fully escape. However, this woman will likely receive more compassion and sympathy than many others in a similar circumstance because of her lofty achievements and public reputation of privilege, without not as much reprimand from others for those that show that compassion and sympathy. It is more often the unknowns that are vilified as the devil incarnate, who fall to the darker side of human nature.

    However, as you clearly indicate even some medical professionals do not take post partum depression seriously enough, and the impact of it on these horrible events is something that must be shared for people that that are lacking in awareness, in receiving appropriate treatment that includes for some effective medication to resolve a temporary set back in life, before it becomes a permanent one, and sometimes more for than just for the person impacted by the mental disorder of post partum depression/psychosis. Psychosis does not play by any rules.

    Neither this type of incident or the type of incident of Sandy Hook can be blamed on media presentations of autism spectrum disorders, as serious lifelong medical conditions Psychosis with an element of substance abuse is more often associated, per actual research that exists. However, no one factor can be assessed as the actual determining factor other than human speculation. It is as likely that it could be a cup of hot coffee spilled that was the final straw that led to the ultimate terrifying act, than other random environmental factor of post partum depression/psychosis that might exist. The answer is to that is forever lost in this woman’s death.

  5. Thank you for articulating for me – so clearly – something I’ve been struggling with personally. As the mother of a 4 1/2 year old very recently diagnosed (formally) with ASD, I’ve been thinking a lot about the media, and the portrayals of autism, and how they impact the parents as they go through the journey to diagnosis. I’ve also felt enormous guilt about the years I spent in total fear that my son would be given an ASD label, somehow thinking that by doing so, my beautiful, smiling, loving and funny little boy would cease to be all those things (because that’s not what autistic kids are, is it?!?). And yet that’s exactly what he is. Nothing has changed about that amazing little guy, who lights up my world. So now I’m getting angry – angry that the “fear-mongering media” as you appropriately characterize it, left me and countless other parents to be petrified of this monster under the bed that is simply not real. I am heartened to see, slowly, more balanced portrayals of ASD emerging, but we have a long way to go. Your article – and the tragic stories in it – so clearly illustrate that point.

  6. Hi Emily, I have a post about the physiology behind PPD and PPP. I see it as a “feature”, a way for a mother under extreme stress to shed an unsustainable metabolic load.

    PPD and PPP are life-threatening disorders. They need to be taken extremely seriously and dealt with by trained professionals who know what they are doing. As your case indicates, many professionals don’t know what they are doing.

    http://daedalus2u.blogspot.com/2007/08/low-nitric-oxide-acute-psychosis.html

    If you put any new mother under enough stress, she will exhibit PPD and PPP. She is just doing what 100+ million years of evolution imprinted onto her genome. It is predictable and (if there is fault to be had) is the fault of those around her who configured society and her environment to be so stressful.

Comments are closed.