Friday, February 11, 2011

ASD 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.”

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


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.  

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.



MOM-NOS writes about the struggles and the getting better at Mom - Not Otherwise Specified.  She is delighted to report that during her son's last school vacation, they spent a full week together and she never once felt like a hostage.  It does get better.

37 comments:

  1. without a doubt, one of the most important I have ever read. Finding you has been a gift. I have nothing else except for thank you for this and everything else.

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  2. Can I say that I'm so proud of you for writing a truly courageous post? Too bad you know I'm going to say it anyway.
    To all who read this post, truly come find us we are waiting with open arms.
    xoxo
    Jersey

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  3. God thank you Mary for writing this. Courageous and honest. I have a few blog posts that I pull out of a saved file and this will be one of them. To remind myself in the heartbreaking overwhelming moments that I'm not alone and to ask for help or comfort. And to share with the newly diagnosed or those who have long been on the journey. Thank you.

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  4. To have the realization that I am not alone in THESE specific feelings and issues has been such a tremendous gift— not just for the emotional support and sense of relief. The recognition that there is a name for this and that I am not weak or incapable actually gives me STRENGTH to pick myself up and deal with it by seeking help. THAT is a remarkable gift I can give myself and my family. Thank you.

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  5. So well written and so beautifully honest. I don't know where I'd be without my autism mom friends. I hope everyone can find the same sense of community that I feel so very fortunate to have found. It makes the dark times brighter and the bright times more joyous.

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  6. This is such an important thing to talk about. So often we take care of our kids without taking care of ourselves, and if we don't take care of ourselves, no one is going to be happy—or truly functional. Thank you for writing this and for offering specific suggestions for getting help. I truly, truly hope that people suffering from PTSD will find this and get help.
    Without question: You are not alone.

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  7. Thank you so much for writing this.....
    Thank you so much.

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  8. I read this and I felt like I was reading about myself. A year ago this month we had to make the difficult decision to put our then 5 yr old into a Childrens Crisis Center - he had to go twice - spending a week there each time. His meltdowns had increased to the point of several times a day - he had become increasingly violent towards my husband and myself and was starting to become violent towards our then 2 yr old daughter, and he was running out of the home disappearing. I poured my heart out to my friends - I didn't know how to cope - I cried most of the day, every day - I read book after book - signed up for services, got him doctors, etc. When I said to some friends online that I began to wonder if I was cut out to be a parent, I was humiliated and ostracized. I was told I wasn't trying hard enough or that I was blaming his disorder for everything - that I never loved him - that I never wanted him - and sad to say some of these people had children on the spectrum themselves. I was devastated as I mistakenly thought that these were my "friends"....
    A month later we had to finally put him in an actual hospital - into a childrens psychiatry unit - he stayed there a month - an hour and a half away from us - it was pure hell. But in the end it was the best thing we could have done for him - we finally got the help we/he so desperately needed.
    I wish I had read this a year ago - to know that I was not indeed a bad parent - that what I was feeling/experiencing was normal - that there were others who could relate - that there were others who wouldn't judge me for struggling and questioning myself.
    Thank you for this post - this truly hit home for me!

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  9. Whoa. That's what it is. that's what has been going on. And I pride myself on handling things so well, on taking it in stride. And what's actually been happening is that I am NUMB to it. Whoa.
    Thanks for writing this. I really, really needed to see it.

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  10. I have spent the better part of the last week having these unexpected hits of crying. Heck, even the last 15 minutes was a bawl-fest. And why? No "reason"... nothing out of the ordinary.. or at least what passes for ordinary around here... has happened. But I feel my soul under siege. Maybe this is it? I have never felt more unequiped, more fragile, and more scared in my whole life. And, wow, does that suck.

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  11. I think for many of us the true acronym would be OTSD---Ongoing Traumatic Stress Disorder. It isn't "post"---we're not returning soldiers, back from a war, trying to adjust to peacetime. Our battles are often invisible to most of the world, but they continue. Our ways of coping sometimes improve as time and experience accrue, but speaking for myself, I become more worn as the years progress, mortality is more consciously present, and the urgent need for a creative response to the status quo is undiminished.

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  12. When I saw your link and comment about this post on Facebook, and the word 'PTSD,' I found myself already nodding 'yep, this one is going to ring true.' Really, really true.
    Thank you as always.

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  13. I have been experiencing this as well. I live in constant fear that my son will harm himself. I can only sleep when he is at school. Everyday is a battle against anxiety and exhaustion.
    I recently stumbled upon an article about PTSD affecting autism parents:
    http://www.specialfamilies.com/autism_and_trauma.htm
    The author Dr. Robert Naseef is a psychologist and autism dad in Philly.
    I thinking about attending one of his presentations, but I won't, because I'm always tired.

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  14. Erin, thank you for sharing your story here. I truly can't imagine what that must have been like, but I'll bet that your comment will make a world of difference to someone who stumbles upon it at exactly the right time.
    Kelly, thanks for that link.

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  15. Wow. I wasn't really sure that weekend if some of the ladies thought I was talking out of my derrière. I am SO grateful that you chose to share this and bring some more light to it. It IS real. My husband has deployed twice since the birth of our special needs child, and I can tell you, the symtoms are amazingly similar between war/an ASD Dx/Dx of any major syndrome/day-to-day caregiving of a child with enormous needs, etc...
    I'd like to add an example... As we have been fighting our school district for a year to outplace our ASD child who also has a chromosome syndrome, it becomes more and more clear that my PTSD symptoms spill over to my dealings with the town Sped Director as well. She is a bully. Just when I feel we have won a small victory, a letter will come in the mail with her name on it, and I panic. My chest tightens. I feel like I cannot breathe. Sure enough, this PERSON can trigger my PTSD. Because I know that every time I come in contact with this person, my child's future is at stake.
    If you find yourself, or know a dear loved one who experiences any of the above symptoms, please gently guide them to learning more about PTSD as a parent or caregiver, and then continue to praise them for the battles they fight every day. DO THE SAME FOR YOURSELF. Like my decorated, veteran husband, PTSD is REAL, and neither he nor us parents should ever be made to feel like it's in our heads.
    XOXO - THANK YOU FOR THIS POST!!

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  16. I read this aloud to my husband; I felt it at my core. I also felt what Rachel spoke of; the pseudo-heart attack that comes in a mailbox, a phone call, a day at the optometrist, the frustration of pulling into a retail establishment's parking lot and hearing the shrieks already starting in the back seat. I have gotten some pharmaceutical help, but I fear it may need augmentation. What I *am* grateful for is the online support community I have found here - they help me, redirect me when I am off track, and make me laugh when I desperately need it. Thank you. A million times, thank you.

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  17. This is IT in a nutshell. PTSD. It took that weekend to help me realize that my entire life, from the age of FOUR, has been lived in various stages of PTSD. I thought I was a wreck. Now I'm thoroughly impressed at how together I really am. Well, sorta...lol!

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  18. They are finding that parents of children who have been treated for cancer are also experiencing PTS - including me and some of my friends. Thank you for addressing this important topic!

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  19. Thanks, Karen. I imagine it's true for parents of children with a variety of needs, but I was hesitant to generalize beyond what I'd heard from the people I know (who are all parents of children with autism). I appreciate your added thoughts - though, of course, I'm sorry to hear that.

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  20. you know, it's funny. so often we need the external validation to finally, truly allow ourselves to embrace what we really already know.
    when i talked that day about my physical reaction to hearing babies crying (because it's a sound that is difficult for my girl) and pixie said, 'yes, i saw you today in that restaurant. your whole body tensed up and you flinched', well, somehow hearing that made it ok. yes, someone else sees it. it's not just my imagination.
    and when rachel, whose husband lives with the daily fall out of having been in a war zone said, 'yes, it's real.' i finally found myself free to say, 'yup, that's where i am.'
    i always felt like using the term disrespected those who had been in 'real' wars. that it would somehow minimize their experience. but really - it was the enormity of my own experience that i was refusing to acknowledge.
    mary, i adore you for taking this to the next level. for bringing the conversation to a wider audience, for taking the time to provide links to real help. you are a gift. fairy tale birds and all.

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  21. This post is right on the money. I got a PTSD diagnosis a few years ago while I was waiting for a residential bed for my son, who had gotten extremely aggressive at puberty. The flinching at loud noises, the inability to sleep without my door locked, the memories constantly replaying, the dreams -- yep, own that t-shirt. Things are better than they were -- my son's on a more even keel, and I can handle things better now that he's only home every other weekend -- but the triggers are still there.
    Thanks for bringing this out in the open.

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  22. This is such a wonderful post. Thank you so much for sharing it.
    Wanted to let you know about a fantastic book available that discusses much of what is being talked about here. It's called:
    Invisible Heroes
    by Belleruth Naparstek
    It is about survivors of trauma and how they heal.
    The author talks about the emotional effects of trauma...immeasurable sorrow, deep grief, rage, numbness, guilt, blame, regret...all of which I have felt at one time or another
    She talks about the behavioral effects of trauma...avoidance, over control, substance abuse, addictive behavior and my personal favorite, compulsive busyness.
    She also talks surprisingly about some of the gifts in the rubble...like heightned creativity, survivor power and spiritual connection.
    The author explains that the "normal way" of dealing with trauma is to talk about it. But because of the unusual way tramatic experiences are stored in the brain, traditional "talk terapies" may actually make symptoms worse rather than better, potentially causing flasbacks, anxiety, depression panic attacks and more.
    She recommends a relaxation tecnique that uses guided imagery, using positive images and thoughts to replace the upsetting ones. She suggests using these tools as exercises in helping to heal hurt hearts.
    It is an interesting concept, I am not sure I am a believer, but regardless of the treatment she suggests the information about dealing with trauma has been enlightening to me.
    This book was incredibly powerful. More importantly, it helped me to develop coping tools that worked for me. Thank you again for sharing this wonderful post, and hopefully this is a valuable resource for anyone who is interested.

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  23. MOM-nos - you do it again
    marvelous post

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  24. Interesting post. It is hard to keep going sometimes, but it does help to know that others have been there and it gets better. I loved Susan Senator's book- I made my husband read the "siege mode" part, because I think that's such a good term for how everyday life feels right now!
    I just started blogging last month for the reasons you mentioned above- we live in a rural area with no support groups, so I started looking online!

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  25. Wow, Mom-NOS. Thank you. I constantly hear what a fabulous Mom I am from people who don't really know me, who don't live with my child. They see him mostly after hours of prep work on where we are going, how to behave, what it will sound like, who will be there, that he doesn't have to eat the food - I'll bring "his" meal ... you know the deal, I'm sure. Those who observe me and see a terrific Mom don't see the turmoil inside, the constant scrutiny for the indicators of impending outbursts. The anger that "just this once" I would like to attend a social event and enjoy myself. Let someone else be the Mom.
    Your post comes after the Little Man's first practice of Special Olympics Basketball. It was not until then that I truly realized how tightly wound I am when I take him out of the house, especially to a child oriented activity. I sat and watched my dear boy do his very best and realized that in that setting it would be enough. I did not have to jump up every two minutes to show him 'how" because they have coaches who do that. I did not have to worry that he would have a melt down "in front of everyone" because all those present would be understanding. They would not stare. They would not judge. He would not appear "spoiled" or "out of control". He could just be who he was; My Little Man living life on the spectrum.
    Now I know. Now I can do something about it. Now I know I'm not alone.
    Thank you.

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  26. Thank you for this. I have been actually saying that what I have gone through feels like PTSD but then am embarrassed because I fear people will think I am being over dramatic. But, this is the best way to describe what I have gone through. I beat myself up often for the feelings I have had and some of the actions I have taken given the way I was feeling. This was not supposed to happen to ME. But, it did. Now, the work of forgiving myself....

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  27. Rachel, I felt that way for a year after I finished dealing with the ABA program in our area. About 8mths ago I was at the hospital where their offices are and shook when I went through the door but I had to prove it to myself, nearly 5yrs later, I could do it. We are going to those same offices for a device - different program. When we went for our first consult the SLP asked us "what about the autism program" and all I said was "it didn't end well"... the absolute LACK of shock on her face told my FSW and I that we were a long way from being the first nor the last to have had to deal with them.
    I no longer have the PTSD or the OTSD (which whoever mentioned it I think has it nailed) but I am still "stressed", my bp is borderline and I get "wound" quick. I mentioned it this past fall to the Dr that I didn't feel "stressed" (overwhelmed) and she looked at me and said....
    "You've gotten too use to it. That isn't a good thing."
    But, we're doing well.... it could and has been a long haul at times. We've been there, done that, with both and I hope anyone who's feeling overwhelmed that things get settled soon.

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  28. GREAT article! I would add just one thing: If you can't find a support group, start your own! Someone has to be the first. Four years ago, I couldn't find one in my area, so I started one with the only other autism mom I knew at that time, and it is positively flourishing today. It's easier than you think, too. I'd be happy to share how I did it with anyone who is interested. It sounds like it would be a time-suck when you're already so busy, but it's really not, and so worth the benefits!

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  29. This post is the most validating thing I've ever read regarding my experience of having an ASD child. Thank you so so much. And OTSD, yes, that's it.

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  30. The last few weeks I've wondered if I was having a midlife crisis. I can't focus. I can't get work done. I can't keep my house in order. I'm a mess.
    Then I read your sentence, "you are a reasonable person who has been living with unreasonable demands without reasonable support for an unreasonable length of time."
    This resonates deeply. Thank you. Thank you for reminding me that I'm not crazy, lazy or a bad person for being unorganized.

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  31. I am not a mom of an autistic son, but a dad of an autistic son. Until a few years ago, I was the main caretaker of our autistic son. My wife had basically been knocked out of service (as a mother) due to postpartum depression immediately after birth. I was the main caregiver for the first 4 years (he's 6 now). In short, our son was diagnosed with autism at 18 months. Even today, I am still the main caregiver as my wife is slowly trying to develop some sort of bond with our son. As a result, I am now finding out that I too have PTSD - I identify mostly with the Arousal symptoms. I feel as though I am sinking ever deeper every day. I'm scared and I don't want this to have an impact on my son.
    I know this is a mom's web site, but there's not much out there for dads who are the main caregivers and have PTSD as a direct result of their child's autism. I'm sorry if this post offends anyone.
    Thank you all for your posts. It helps me a lot. My heart goes out to all of you moms who are doing this all alone. At least from this dad, you have my respect.

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  32. oh god I almost started howling, Ive been feeling like Im going crazy and feel so guilty about how withdrawn Ive become from my children, and how tired tired tired I am. Thank you for this, I often feel alone and just not up to the task of being the mother my son needs and deserves, it helps to know this is sometimes a 'reasonable' response.

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