N.B.: I typically wait a few weeks to re-post my Hopeful Parents entries on my own blog, but this one seems to have resonated with parents to a degree I hadn't anticipated. Between the comments and e-mails I've received and the notification on Facebook that says 254 people have shared the link, I'm thinking that this is a subject that has not gotten enough attention and that it's a message that many parents need to hear. Since the shelf-life of posts on Hopeful Parents is relatively brief (because there are two new posts every day), I think it might continue to reach more people here, where posts tend to linger on the home page a lot longer.
This post originally appeared on Hopeful Parents on February 11, 2011.
In her book Making Peace With Autism, Susan Senator writes of the periods when her family must manage her son’s most difficult behavior, “we live as if under siege.”
In her blog, Jess from A Diary of a Mom talks about her feelings in the early days following her daughter’s diagnosis as “that awful, combustible mixture of heart-wrenching pain and abject fear.”
In the archives of my Twitter feed is a tweet I wrote during a particularly difficult school vacation, when Bud’s behavior made me afraid to leave the house with him: “I feel like a hostage.”
As anyone who reads us knows, Susan, Jess, and I love our autistic children. We truly, madly, deeply love them. We celebrate them. We advocate for them. And yet, each of us has experienced intense feelings of hopelessness, helplessness, and fear.
I heard the same dichotomous feelings echoed by other women a few weekends ago, when I attended a social function with a phenomenal group of autism moms. As I’d expected, over the course of our evening together, there was plenty of IEP talk, plenty of been-there-done-that edification, and plenty of laughing so hard it hurt. But there were also more tears than I’d expected. There was more vulnerability than I’d predicted - more fragility, more shared feelings of aloneness, more compared notes on the emotional and physical tolls that this autism parenting journey was taking on the women around the room.
It was in the middle of one of our more heart-rending conversations that one of the moms, whose husband has been serving active duty in the military, said, “You know what this is, right? This is PTSD. Post-Traumatic Stress Disorder. It really is.”
The group fell silent.
Then people started sharing. The physical reaction to loud noises. The sleepless nights. The ceaseless anxiety. The sensory overload. The fear.
Not their children: Them.
The diagnosis resonated – not for everyone, but for some. I watched as faces changed, as moms considered – perhaps for the first time – that their feelings and their troubles were not the cause of some personal inadequacy or weakness or inability to cope, but were instead the reasonable response of a reasonable person who had been living with unreasonable demands without reasonable support for an unreasonable length of time. I watched as they looked at each other – but YOU – so strong – so together – YOU feel this way, too?
It was a powerful moment.
I walked away thinking that it was a moment that should be shared – that there are probably many parents of autistic children who think that their pain, anxiety, and feelings of hopelessness are theirs alone, and, worse, are an indication that they are just not capable of parenting their children. So, I went home and started Googling. I landed on a page from the National Institutes of Health that lists the symptoms of Post-Traumatic Stress Disorder. The description below belongs to the NIH, but the bolding is mine; it highlights the symptoms that I heard my friends identify in themselves:
Symptoms of PTSD fall into three main categories:
1. Repeated "reliving" of the event, which disturbs day-to-day activity
■Flashback episodes, where the event seems to be happening again and again
■Recurrent distressing memories of the event
■Repeated dreams of the event
■Physical reactions to situations that remind you of the traumatic event
■Emotional "numbing," or feeling as though you don’t care about anything
■Feelings of detachment
■Inability to remember important aspects of the trauma
■Lack of interest in normal activities
■Less expression of moods
■Staying away from places, people, or objects that remind you of the event
■Sense of having no future
■Exaggerated response to things that startle you
■Excess awareness (hypervigilance)
■Irritability or outbursts of anger
You also might feel a sense of guilt about the event (including "survivor guilt"), and the following symptoms, which are typical of anxiety, stress, and tension:
■Agitation, or excitability
■Feeling your heart beat in your chest (palpitations)
It’s important to note that PTSD is characterized by symptoms that persist for more than a month – and that the items I’ve highlighted here are those that have been persistent and unmitigated for my friends. Symptoms resolved within a month – those I haven’t addressed here - are considered manifestations of Acute Stress Disorder (and, no, the irony that it shares its acronym with Autism Spectrum Disorder is not lost on me).
The source of my friends’ symptoms - the identified “trauma” - varied from woman to woman. For some, it was the impact and subsequent upheaval of the diagnosis itself. For others, it was an event - or series of events - involving their children’s aggressive behavior or uncontrollable tantrums or self-injurious behavior or indescribable fear. For others, it was the toll exacted by constant vigilance - living life, day after day, in a metaphorical foxhole, watching and waiting for the next attack, but never being sure when it would come, how long it would last, and what kind of devastation it would leave behind.
For some women in the group - more, actually, than I would have imagined - autism emerged in their lives in the wake of another trauma, the physical and emotional impact of which had not been fully resolved. Already struggling, already vulnerable, already fragile, they found their symptoms – the reliving, the avoidance, the arousal – not just heightened, but compounded by parenting a child with autism - more insidious, more difficult to pinpoint, and, somehow, more easily assumed by them to be the result of their own personal failing.
I hope that as you read this post, you don’t see yourself in its words. But if you do – IF YOU DO – listen to me: you are not experiencing these things because you are weak or because you're a bad parent or because you’re just not trying hard enough. You are experiencing these things because you are a reasonable person who has been living with unreasonable demands without reasonable support for an unreasonable length of time.
And it can get better. Here’s what you can do:
Read about treatment options. Here. And here. And here.
Make an appointment with your physician or with a therapist. Print the list from the National Institutes of Health, highlight the symptoms you have, and bring the list with you to the appointment. Read this post from Jess at A Diary of a Mom if you start to lose your nerve. Better yet, print it out and bring that with you, too.
Find a support group. Don’t find a group of angry parents who get together and spin their wheels while they rage against the oppressive system. Though they may call themselves “support groups,” in my experience, those groups are toxic. Find a group of people who want to talk through the hard stuff, but who are forward-thinking problem-solvers. If you can’t find one in your local community, take the advice of Boy Wonder’s Mom and find one online. Look for people who are saying things that resonate with you, then join the conversation. Don’t be afraid to jump in – bloggers are blogging because they want to connect. People are joining online communities and listservs because they are looking for others who understand. Find them.
If you feel under siege, if you feel heart-wrenching pain and abject fear, if you feel like a hostage, then know these two things:
You are not alone, and
It will get better.