PTSD and Autism

There was an article a while back that talked about Autism mothers having brain scans that matched those of soldiers back from war that had been diagnosed with PTSD.  It’s no shock to me that there is a link.  Trauma of birth alone can shock a woman to her core depending on the circumstances.  Then to nurture a child with your heart and soul only to have a doctor give a side glance and an Autism diagnosis in less than 15 minutes time is yet another jolt.  It tends to isolate parents to feel so alone because no one can relate. As a result, they often withdraw all together.  Friends no longer call and invite you to parties.  Family members ignore or pretend all is well and avoid talking about your children.  You really are better off on a deserted island all by yourself,  at least you’d have peace and quiet.

When finally there is peace and quiet, you finally realize how deafening it is.  The loud buzzing in your ears as if they are scanning the environment with the receivers cranked way up trying to detect where the children are that can’t be picked up.  It really is a frightening sound – silence.  One of those times when I didn’t hear anything and had hoped my little boy screamed himself to sleep for once, I found him standing on the window sill of a second-story window that was wide open.  He wanted a better vantage point of the park behind our house and was pushing himself against the screen trying desperately to get a better view.  Below that window was a wooden picket fence.  It is not natural for the human body to go from a state of complete relaxation to an extreme sympathetic nervous response, especially on a regular basis.  PTSD?  Yeah, I’ll buy that.

When your child does nothing but self abuse, fight, and attack you as well as others, it is no wonder that we have PTSD symptoms.  We are on a constant heightened alert.  When is the next disaster going to strike?  Will he go to sleep tonight or will we be on a 72-hour, no-sleep marathon again?  Will he elope in the middle of the night while I am passed out cold from exhaustion and get lost or end up in the river?  And people wonder why Autism parents are wound up so tight?  Really?  With the lack of funding in so many communities and even less support from family and friends, it’s no wonder some people crack under the pressure and assume it would be best to take their lives or the lives of their children.  It is not something that I recommend, but I can certainly see how people get there.

They get there from living in the trenches too long without support.  As a single parent trying to do it all or while the other parent is off working multiple jobs to make ends meet, it is a constant struggle for most.  There is not enough support in the world sometimes.  Some people get financial contributions as support which helps, but the emotional support is few and far between.  People take notice when there is typically a tipping point.  When an overwhelmed parent is teetering and finally stands up and screams to only get ignored by the room full of people as if they were not even there.  Even better is when you’re then criticized for popping your cork.  It isn’t surprising that so many people turn to facebook for a sense of unity.  We can all relate right?  It’s a bit of therapy.  But then naturally – you’re criticized for spending too much time there and not enough time disciplining your child.  It’s all more than enough to drive a person crazy.  So the next time you read an article about Autism parents and PTSD or other trauma related diagnoses…that will be me screaming in the background.

~Cupcake

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36 Responses to PTSD and Autism

  1. Mumzee1961 says:

    All of us moms – whether our child is diagnosed with Autism as a toddler, our school-age child is being treated for ADHD, our teen is found to be using drugs to self-medicate her anxiety/depression, or the countless other major things that happen daily in our homes across the country – should open our hearts and our minds and support each other. Unfortunately we usually don’t do that until something happens to our own child. BUT…the article and the study this refers to does NOT say parents of children with autism have PTSD! It says they daily live with the same levels of stress as combat soldiers. PTSD is very different and to say that you have it because you deal with daily levels of high stress is INCORRECT. PTSD occurs when a person experiences trauma where their life is threatened to the point that they believe they may DIE at any moment – from being in combat, or at a public shooting incident, being raped, surviving a plane crash and other similar traumatic experiences. Their brain changes its connections from previously being able to problem-solve a stressful/difficult situation to now their brain going straight to “I’m going to die.” All the physical and mental (horrible) trauma is relived over and over again. I know this because I was finally diagnosed a couple of years ago because of trauma in my teens – I’m now in my 50’s. Having daily crises with children – whether autistic, cancer-stricken, drug-addicted, or the myriad of other overwhelming conditions – all need support and understanding from friends, family, community. The similarity between people with PTSD and parents who deal with these issues is that when it goes unrecognized, misunderstood, ignored or downplayed it only gets worse. [Combat-stress and PTSD are different issues.]

  2. Rosalyn Carter says:

    I agree and empathize with all of you wonderful mothers. Thank You! Thank you for your honesty, strength, perseverance, and love.

  3. Cree Mh says:

    It is such a rarity to find my experience so honestly captured. Thank you for giving a glimpse of the reality of my life and the lives of so many others. We are the majority within this population, yet the least represented, least funded, least supported. Our stories don’t end in recovery and happy ever after, so they remain untold. Again, thank you for sharing this bit of us with the world.

  4. Taximom5 says:

    THANK YOU SO MUCH FOR WRITING THIS.

    I can’t tell you how much it needed to be said.

    I’m one of the lucky ones–my child recovered. And that has put me in a different autism-mom-social-community–the one full of moms who have NO CLUE what you parents in the trenches are going through The autism you deal with? It’s a totally different autism from the one they face. They think they KNOW autism. But none of us who haven’t gone through what you’ve gone through really get it, until we’ve seen it in our own eyes. What you go through is so completely overwhelming, most parents like you have absolutely no time to tell people or even write down what it is really like.

    And so the picture most people have of autism is the one that the parents who are NOT so overwhelmed paint, because they’re the ones who have time to paint it. (And the pharmaceutical industry is all too happy to advance the idea of “autism is a gift…”) So they paint happy little pictures of autism = creative child, autism = incredibly smart child, autism = child blowing up balloons, autism = happy child twirling in ballet dress, until most people get the impression that autism isn’t a bad thing, it’s certainly nothing to be cured, and hey, maybe it’s a WONDERFUL THING :) No mention of the sleeplessness, elopements, drownings, feces-smearing, screaming, head-banging, self-injuring, or any of the other life and health-threatening problems that come with severe autism.

    So please, keep shouting this from the roof-tops, because too many “autism moms” still don’t get it; and if they don’t get it, the parents of neurotypical kids are certainly not going to get it.

    • ProfessorTMR says:

      It is SO good to read this comment, Taximom. All of us have had encounters with parents of kids with autism (or adults with autism themselves) who paint rosy pictures of life with autism that completely discount what life can be like for people at the severe end of the spectrum. And then they want to “speak” for autism, as if all people with autism experience it the same way. Not only is that NOT the case, most of those people would not have fit the diagnostic criteria for autism until 1994, approximately 50 years after “autism” was first described and diagnosed. As a matter of fact, the impairments that those people faced were of so much lesser intensity that there was NO diagnosis at all. So to claim that they “know autism” or “speak for autism” is to do a tremendous disservice to those are who are profoundly affected by autism. It will take more and more people like you who can say, “Those folks are right. That’s how it can be at the severe end of the spectrum, and I know because I went through it” to change the conversation.

  5. Kerry J Sellers says:

    You totally hit a home run !! Its so true!! I’m going to print it and give it to the only family that is close. .. the in laws

  6. Susan Daley says:

    You took the words right out of my jumbled up, fear debilitated , information hoarding brain. I literally don’t know where I’d be without the support of my online Autism family. Others try to support, but nobody truly understand what it’s like to be the momma…except the other mommas. May God bless all of our children.

  7. FirefighterTink says:

    You hit the nail on the head… Constant battles and worry, I have not slept a full night in 23 years. Three years ago I suffered a Stress Induced Heart Attack and the Dr told me I had to reduce the stress in my life.. I laughed at her and asked if she met my family. I have 3 young adults with Autism.

  8. Word.

    I want to post this on my Facebook page, but I wonder if people are probably sick of 90% of my timeline being about autism, and I wouldn’t blame them.

    I have a great family that does all they can to support us, but I know I’ve been isolating lately because trying to explain our life has become exhausting. I know they think they understand, but they just don’t. And there really is much more they can do to help. I’m constantly told I need to take a break or take it easy or that I’m trying to do too much, but my mind can’t take a break. On top of that I worry about people worrying about me.

    I know our extended family love us and feel helpless too. This manifests in pity and it pisses me off. I don’t know why, but it drives me crazy. Does anyone else have this? Then I isolate more because I don’t want us to be around people when things are out of control.

  9. Melanie says:

    Another great quote I’ve lived by for years. . .
    “Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, I will try again tomorrow.” Radebaugh

    Know you are not alone.
    M.

  10. Pingback: Sometimes All You Can Do is Live in the Moment

  11. Yoli says:

    Apparently, being a mom of an autistic child puts you in the harsh judgment seat. Increase of abuse against autistic people is on rise. Autistic people are often targets of sick people who prey on vulnerable people. Worse, they sometimes blame parents when their autistic children is abused, as if the person with autism is less than human and somehow just being autistic is a reason you can abuse them! How screwed up is our world? Recently, a case where caregivers caught on tape punching, kicking and poking eye of severely autsitic man, we find caregivers denying all charges (though their abuse is clearly seen on camera). Their defense then takes a new twist of illogical defenses to abuse of autistics, by blaming the mom of autistic child, for being a “high maintence mom” who demands high standard of care for her autistic son, as if that justifies caregivers abusing him! Just horrific. I guess it’s open season on autistic people. See channel 8 san diego news: December 27, 2012
    http://news.yahoo.com/video/caregivers-autistic-man-accused-abuse-030100404.html

  12. Carmen Palacio says:

    You nailed it! I worry about the physical toll it takes on us Moms. We must find those supports and that “family”, who may not necessarily be related to us, who can and will help and allow us to get some R&R. Always working on overdrive burns out the motor eventually…

  13. Carolyn says:

    Also add the stress of the culture at large often ridiculing the things we try to heal our kids with such as diet . What mom of a diabetic kid has to fight drs or knowing patronizing teachers who want to inject her kid with sugar? We GET TREATED AS IF WE are too stupid to know what is best for our children.
    And yet even though my son had an allergic reaction to hep b shot at birth I am looked at as a wacko when I ask for vaccine exemptions even tho the shot insert clearly says not to take if prior allergic reaction.

  14. Carolyn says:

    It occurred to me that vaccine or toxin injuried brains might look like PTSD. I had mercury laden flu shot and Rhogam . Soldiers are forced to take many shots.

    Please post your source I would love to ask the researcher who found this if my hypothesis could be true. But the constant stress you spoke of is of course there always.

  15. Happy says:

    Spot on. I’ve been saying I have PTSD for a long time now. Nice to have it confirmed and to feel, once again, I’m normal in this community at least. Thanks.

  16. Laurie Murdock says:

    Spot on, Cupcake. Spot on.

  17. Momma T. says:

    What I LOOOVE about the Thinking Moms is– You ALL. Say. It. OUT. LOUD!!

    Thank you!
    Momma T. @ detourautism.blogspot.

  18. Boss mom says:

    There are even autism moms that are abusive to other autism moms. Horrible women who threaten women that don’t agree with them and it is another feeling of isolation that is heartbreaking. Bottom line is most people are good but the bad ones hurt deep down to the core

  19. Mom says:

    Wow. That pretty much sums up how I felt for the last six years. My daughter just started full day kindergarten and I feel like a real person for the first time in 8 years (she has a sister). It took two aides to calm her down yesterday. Sympathy from me? Hell no. I’ve been doing it 24/7 by myself for SIX years. Begged for help. None. For those of you on the edge:

    “When you come to the edge of all the light you have, and must take a step into the darkness of the unknown, believe that one of two things will happen. Either there will be something solid for you to stand on or you will be taught how to fly” — Patrick Overton

    It’s been on my fridge for 6 years. Hang in there until you see the light.

  20. Kelly O says:

    I think it would surprise me more to hear of Autism parents that don’t have symptoms of PTSD at all. You can go through hell and back multiple times in a short span of time, and all while being expected to put on a brave and happy face.

    It’s times like this that I wish I lived closer so that I could give you more of the support you need. So that I could be there on my nights off and just stand guard so you can sleep soundly for those nights.

    I wish that there was more funding available to Autism families, including some funding for counseling, support groups and other resources for parents.

  21. Andie Herman, MSW says:

    Carry On Cupcake. There is much science behind your experience! No one is prepared for the challenges that come with raising a special kid. Your development as a parent has differed from those children have arrived with less complicated behaviors. My special kiddo is 26 and I am still learning about myself as a parent.

  22. Monica says:

    I can totally relate to everything you just said. It’s a lonely life and the PTSD is a real thing. I have considered taking my life many times but I just couldn’t leave my husband and children without. I’m screaming with you!

  23. Tish says:

    <3 this Cupcake! I am so there with you on this!!
    I shocked myself, yesterday… maybe something is seriously wrong with me? Depression or maybe a sign of something else that is serious?? DD (almost 5 and somewhere in the 90% for height and weight and getting to big to carry) was actually upset I did not carry her into her integrated preschool classroom and began tantruming in the hallway. I just stood there, unable to react, not caring while the teacher took the 15mins to distract and calm her. The emotional switch has turned off. I am drained. People keep telling me I'm doing great…I'm doing everything right. I should take time for myself (which I do, regularly) but it doesn't make any difference. I'm just done with being the one to calm her all the time, and all the emotion. She's got 5 therapists now, a teacher, and 2 paras, someone else can take a turn :P What say you moms? Are you feeling this way too?

  24. Wendy Frye says:

    I can absolutely relate, Cupcake. I too am reactive by nature now……and have been changed by Autism in my home. Great article, thanks!

  25. Kristina Blizzard says:

    Could you post a link to the study you mentioned. I am not aware of it, and wonder if you meant to refer to this study in which stress hormone levels used rather than brain scans?

    http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/

    Thanks.

  26. Charlotte says:

    Thank you for this. The part about family members withdrawing and not wanting to talk about the kids, I can totally relate. Well I relate to it all 100%.

  27. Courtney says:

    This blog post hits close to home…as since my son’s diagnosis or really even before that when he first started showing signs of something being wrong. I began to experience extreme anxiety and insomnia. No matter what I have done has helped…even modern medicine with all it’s wonders failed because how can I not constantly worry about my child, affording his supplements, treatments and therapies. Recently I found out I have developed an auto-immune disorder of the thyroid (I have been told it was kicked off by stress) and recently I was actually officially diagnosed with PTSD. I know it’s hard to understand without walking in our shoes..but I do so with others could try to understand what autism does to a family…a mother..the father and most important the child. It is life changing…it affects every aspect of your life and nothing you once knew to be true is anymore. How lucky we are to have found one another to lean on.

  28. Carolyn M says:

    For parents of school-age children with autism (unless they are very lucky, or possibly home school their child) there is also the stress of having to fight the public school system for the services and/or placement that their child needs (and that is most definitely “appropriate” for the child). For some parents, this is an almost constant battle.

    As the child gets older, there is increasing pressure due to attempting to get the child as independent as possible – before the child “ages out” of the public school system, since the services available afterward appear to be few to none.

    If you are a parent who implements biomedical interventions for your child, you also have the worry that someone will report you for “child abuse”. On that subject, if your child attends public school: NEVER tell any school personnel that you are chelating your child or have chelated your child (if you have chelated or are doing so) – it greatly increases the possibility of trouble.

    • shannon wasserman says:

      You also have to worry if you don’t do biomedical treatments. I’ve had many non-biomedical mom friends who’ve had contact with police and CPS because of loud behaviors and situations that other people just don’t understand. There’s just a lot of pressure.

  29. Lj says:

    Thank you cupcake! Can’t wait to get to my computer and share! Beautifully and truthfully stated.

  30. Diana Gonzales says:

    Yup…that’s all I got cuz you nailed it.

  31. BB says:

    Wow, reading this article is the best support I’ve had in a long time… How did you know exactly how I feel? Thanks!

  32. Mamacita says:

    Big hugs, Cupcake.

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