Autism Parents May Be At Risk For PTSD

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ASPartOfMe
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10 Mar 2020, 1:42 am

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Nearly 1 in 5 parents of kids with autism who participated in a new study had enough symptoms of post-traumatic stress disorder to qualify for a provisional diagnosis.

The study, which included hundreds of parents of children who are on the spectrum, found that 18.6 percent met criteria for PTSD.

The symptoms were more likely in parents whose kids displayed challenging behaviors like physical aggression and self-harm, according to findings published recently in the journal Research in Autism Spectrum Disorders.

Ali Schnabel of Deakin University in Australia who worked on the study said that it’s hard to say if the findings would extend across all parents of kids with autism, particularly given how varied the spectrum is. She noted that the study looked overwhelmingly at mothers — who accounted for 96 percent of participants — and that fathers may experience things differently.

The research looked at 395 parents of children ages 5 to 20 in Australia. Of the parents, 226 had a child on the spectrum while 139 had a child with a rare disease like Duchenne muscular dystrophy and 30 had typically-developing children. All of the parents completed an online questionnaire about their children’s behavior, traumatic stressors in their lifetimes and a checklist commonly used to assess symptoms of PTSD.

None of the parents of typically-developing children met the clinical threshold for PTSD. Among parents of those with rare diseases, just over 12 percent met the criteria for a provisional diagnosis.

Schnabel said she hopes that health professionals working with families of those with autism “might become more proactive in screening for PTSD in such parents.”


Challenging child behaviours positively predict symptoms of posttraumatic stress disorder in parents of children with Autism Spectrum Disorder and Rare Diseases - Research in Autism Spectrum Disorders Volume 69, January 2020, 101467


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magz
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10 Mar 2020, 2:13 am

And then PTSD parents are more likely to inflict PTSD on their own children... which would likely make the child's health and behavior even more problematic... which would...
Yes, the issue is most likely serious and worth adressing. An isolated system of autistic kid and PTSD parent is likely to spiral down to hell :(


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Jon81
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11 Mar 2020, 5:25 pm

I am clearly among those 18% suffering from PTSD. In the evenings I'm having this enormous pressure in my throat and chest which leaves me exhausted. It's not connected to my boy having challenging behaviors, it's rather caused by the uncertain future and all the confusing information coming from all directions.

We've been setting up a group for parents with autism/adhd, or more correctly, my wife did. I would never come up with that kind of idea. Either way, all the other kids in that group seem to be doing just fine. Autism level 1, is that even a problem??? I can detect the adhd but the autism is so subtile it's ridiculous, really. For example, they sit and read together with their kids... They can communicate! They can tell their kids to try different things...
All those things are completely unthinkable to me. So yeah, the stress just gathers up when I'm among other parents with "problems" :roll: . So its gone from comparing NT kids to other autistic kids now, and we still can't find any comfort at all.

Is there any other parent out there with PTSD or who can relate to this situation?


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DW_a_mom
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13 Mar 2020, 5:39 pm

Jon81 wrote:
I am clearly among those 18% suffering from PTSD. In the evenings I'm having this enormous pressure in my throat and chest which leaves me exhausted. It's not connected to my boy having challenging behaviors, it's rather caused by the uncertain future and all the confusing information coming from all directions.

We've been setting up a group for parents with autism/adhd, or more correctly, my wife did. I would never come up with that kind of idea. Either way, all the other kids in that group seem to be doing just fine. Autism level 1, is that even a problem??? I can detect the adhd but the autism is so subtile it's ridiculous, really. For example, they sit and read together with their kids... They can communicate! They can tell their kids to try different things...
All those things are completely unthinkable to me. So yeah, the stress just gathers up when I'm among other parents with "problems" :roll: . So its gone from comparing NT kids to other autistic kids now, and we still can't find any comfort at all.

Is there any other parent out there with PTSD or who can relate to this situation?


I think you are doing a good thing, meeting with other families. And I love that you pointed this out:
"It's not connected to my boy having challenging behaviors, it's rather caused by the uncertain future and all the confusing information coming from all directions."

I'm not in your situation at the moment, but I was. One thing that helped me was realizing that I could and should shut out all the voices trying to give me parenting advice or compare children. You pay attention to your child, use cues from him to help him thrive, and toss out every other assumption and voice that keeps coming at you. When you want an answer, you seek it from sources with which you've gained some level of trust and comfort (for me, that was this place). While reading and gathering information is important to this journey, only pieces of it apply at any given time, and in the interest of managing your own bandwidth I would simply ignore whatever doesn't apply today.

My ASD son is now 22. He graduated from college last June and finding his career job has been slow going. He never had any trouble with summer jobs, but he also never had to "work" to get those. Now he has to learn the skills of persistence and perseverance. I trust he will. Meanwhile, he is busy working on some pet projects that may or may not ever yield results he can monetize, and also providing a lot of guidance and support to his girlfriend, who is also ASD. Unlike him, she was never diagnosed, and never learned to manage her sensory overload. So she still melts down frequently, and dealing with it from the other side (the person wanting to help) has been quite a revelation for my son. He has become incredibly grateful for all we did for him growing up, how we prioritized teaching him to recognize his own overload and take mitigation measures long before a meltdown happens. I guess I hope this little paragraph helps you feel some hope.

The years before you feel your child has mastered a few key life skills are very hard. I do remember the point when I finally believed to my core it would be OK. I think my son was in 8th grade. Before that I would say he had good prospects, but it felt very unknown. I stayed focused on the priority of the day and, honestly, tried to not think too much about the future beyond using it to identify what to prioritize. But there was a point where I realized one of the most worrisome skills had been dealt with and I felt so much pride in how he had stuck with doing the hard work to overcome the obstacle. Suddenly really seeing the results of all of us dealing with years of frustration but never giving up. It's a good moment, if you are lucky enough to have it.

I can't promise you that moment. But I can say that even with an NT child no one could promise your child a good future. My NT daughter has issues that snuck up on us and exploded. Personally, I prefer the more obvious issues that come with ASD. It was just easier for me to solve.

You know your child. You know what skills will matter to the kind of future his talents and interests might craft for him, and what skills are social constructs you can ignore even if the world around you wants to obsess over them. When we raise ASD kids we get to through out the rule book. We NEED to throw out the rule book. So quiet all those overwhelming outside voices.

Good luck. I hope this helps. If not, hopefully another poster will have the words that speak to you. We never know.


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16 Mar 2020, 12:53 pm

My mum has some sort of PTSD from her childhood upbringing, as her father was a severe alcoholic and always displayed frightening and abnormal behaviour.
Then she went and had 2 children; me with Asperger's and ADHD, and my brother with depressive disorder and possible Asperger's. So my poor mum has had her hands full with insanity - no wonder she's now suffering with her health. :cry:

I suppose she was expecting both her children to turn out neurotypical like most children of neurotypical parents are, plus she hadn't heard of autism back then.


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Jon81
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21 Mar 2020, 4:47 pm

Joe90 wrote:
My mum has some sort of PTSD from her childhood upbringing, as her father was a severe alcoholic and always displayed frightening and abnormal behaviour.
Then she went and had 2 children; me with Asperger's and ADHD, and my brother with depressive disorder and possible Asperger's. So my poor mum has had her hands full with insanity - no wonder she's now suffering with her health. :cry:

I suppose she was expecting both her children to turn out neurotypical like most children of neurotypical parents are, plus she hadn't heard of autism back then.


Just to let you know, there are other people out there who had the same kind of life. My colleague at work comes from that kind of background; father drank a lot and wasn't the best person to be around. His children turned out to have asperger/adhd (2 with diagnosis and 2 that probably should have had some diagnosis). His wife is my fathers cousin, so the DNA-traces are obvious in our family.


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Jon81
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21 Mar 2020, 5:12 pm

DW_a_mom, thank you for your reply and sharing your story about your kids. I love reading these stories. Had a reply halfway typed but then realized I'm moving away from the subject of the thread :|

I will need to post something for advice later on. I've been wanting to ask so many questions but I just can't get a post together because there is just so many things on my mind.


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Steve B
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03 Apr 2020, 8:41 am

I can hear the the sound of parents all over the world saying that my child is the source of my suffering