Today on The Talk a fairly new CBS Talk Show, they continue to shine a light on Autism Awareness Month. On the show they focused on some amazing teens who have autism and are role models in their community.
One such teen, Carly Fleischmann, literally took my breath away. A hurried and very deep sob came from no where when I watched her “talk” via computer program about what life was like as a teenager with autism. I read another autism blog recently that talked about parents having PTSD (post traumatic stress disorder) and reliving the reality of this disease day in and day out. I haven’t been able to get that post out of my mind and have shared it with a few friends. I do believe that at moments like these, I relive — or recreate — the sadness and trauma that one faces when given a lifelong diagnosis of autism. And the deep, deep desire to help him reach his potential… whatever that may be.
In her blog Mom-NOS states:
“…The physical reaction to loud noises. The sleepless nights. The ceaseless anxiety. The sensory overload. The fear.
Not their children: Them. (the moms)
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
- 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
- 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).”
For you other autism moms reading this blog, I sometimes feel this way too. I do.
What brought me to such deep tears so quickly was the fact that Carly talked so eloquently through a computer. Her thoughts and her comments were so ‘normal’. And that was her point! She said that because she may not look normal on the outside, people are quick to judge that she’s not smart. And because she can’t articulate her thoughts through the spoken language, she is often misjudged.
She is an amazing gal and I’m so intrigued with her story because she CAN communicate and tell the world just what it’s like to be in a body/mind with autism.
What would my Tony be like if he could really communicate? What would he say? What would he tell me? I would walk a thousand miles to be able to just have a conversation with him about what he’s feeling and why he gets so frustrated at times.
Maybe he could answer the one question that’s been burning on my mind since his diagnosis 16 1/2 years ago… why did this happen?
or maybe he’d tell me that the ‘why’ just doesn’t matter…