Autism and PTSD

Guest poster MOM-NOS lays out the facts about post-traumatic stress disorder and how it affects autism families. Photo: Julia Freeman-Woolpert

SILVER SPRING, Md., May 23, 2011—When you have a child with autism, it can feel likethat you are constantly dodging grenades that come in the form of meltdowns, calls from the school, self-injurious behavior and other unexpected sources.

Guest columnist MOM-NOS explains that these feelings are natural, considering the toll that parenting a child with autism can take. MOM-NOS is a well-known and respected blogger in the autism community.

Bud is the pseudonymous name of her autistic son. The following essay, previously published on her personal blog, is reprinted with her permission.

Autism and PTSD

Autism and PTSD

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.”

On 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. 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

2. Avoidance
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

3. Arousal
Difficulty concentrating
Exaggerated response to things that startle you
Excess awareness (hypervigilance)
Irritability or outbursts of anger
Sleeping difficulties

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
Dizziness
• Fainting
Feeling your heart beat in your chest (palpitations)
• Fever
Headache
• Paleness

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.

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.


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Jean Winegardner

When Jean had her first child in 2001, "autism" was about the scariest word she could think of. Six years later when her second child was diagnosed with PDD-NOS, a form of autism, she was just happy to have a word to help him get the services he needed. Her autism journey has been full of tears, laughter, love and at least one attorney.

Jean blogs about her life with her autistic son, Jack, on her blog, Stimeyland. Her two neurotypical children, Sam and Quinn (one older, one younger than Jack), make frequent appearances there as well. Also at Stimeyland? Jean's quirky sense of humor.

She also runs AutMont, an events calendar listing autism-related events in Montgomery County, Maryland.

Raising a child with special needs is hard for so many reasons, but after living with Jack, Jean wouldn't trade him for anything in the world. Come along with Jean as she experiences the joys that come with parenting a special kid.

You can email Jean anytime at stimeyland at gmail dot com or follow her on Twitter, where, as "Stimey," she offers her world view in snippets of 140 characters or less.

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