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What's Missing From This Study Connecting PTSD to Parenting an Autistic Child

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Sometimes the news isn’t as straightforward as it’s made to seem. Maxine Share, a Mighty contributor, explains what to keep in mind if you see this topic or similar stories in your newsfeed. This is The Mighty Takeaway.

A recently published study says the challenging behaviors that may emerge in some autistic children — aggression, self-injury, elopement, pica and suicidal ideation — lead to increased stress in the parent. “Challenging child behaviors positively predict symptoms of post-traumatic stress disorder in parents of children with autism spectrum disorder and rare diseases,” the title reads. 

• What is PTSD?

While the paper briefly acknowledges that other factors could maybe, possibly, be causing high rates of post-traumatic stress disorder (PTSD), it leaves the impression, with a title that makes no effort to conceal the sensational, that the autistic child caused their parent’s mental health crisis.

If you don’t consider the research carefully, it would be easy to conclude that having an autistic child is such a terrifying and traumatic experience, 18.6% of those parents — mostly mothers, to be more specific — are so put-upon by these children they are stricken with PTSD, a mental illness that can lead to nightmares, flashbacks, intrusive, uncontrollable thoughts and severe anxiety.   

What a crock.

I do not speak for all parents of autistic children, but I can say in our home, my autistic child’s challenging behaviors were never and are never the cause of my increased stress levels. I can also say that I have met thousands of parents of autistic kids who adore their children and are also often, like me, stressed out of our minds.

Not because of our kids, mind you, but because of the general ignorance of autism in our society. 

Of course — of course! — we are stressed and distressed when our children engage in challenging behaviors. However, we know or come to know that challenging behaviors happen when our child is frightened, misunderstood, panicked, overwhelmed and we say: what the hell did you do now, world? What accommodation did you deny? What sensory experience did you force? What demands did you fail to align with his ability to cope? What teasing, bullying, isolating comment did you make?

The truth is, “challenging behavior issues” are really lack of proper support issues and lack of understanding issues. Poorly supported and misunderstood children are more likely to be anxious, and anxiety can lead to a variety of challenging coping behaviors

Let’s start with this. From my experience as an autistic parent raising an autistic child, I know that schools still don’t know how to educate autistic children — neither those who cannot communicate with spoken words nor those who can. Non-speaking children, whom our system disrespectfully refers to as “low-functioning,” as well as those also cannot control their body, find themselves “managed” — often bored to the point of frustration, infantilized, patronized and babysat. Non-speaking does not mean they have nothing to say or nothing to offer. From my experience, our schools do not know how to tap into their dreams and preferences, and certainly, don’t know how to teach them academics. In response to a daily school routine that is sameness and nothingness all at once, these children may elope, self-injure or lash out.

Those children with ASD Level 1/ Asperger’s, who have no intellectual delay and communicate with spoken word? There is often little to no patience for their learning, sensory and social communication differences. If you are slow to finish your work, don’t understand what was expected, can’t get started, miss social cues, well… you’re just lazy, rude and not that bright. When you are what the system likes to call “high-functioning,” the system could not care less about your needs (which is why we do not like functioning labels!). 

At the end of a day, when the speed and volume of school work are too much and too fast, and the social and sensory demands exceed their capacity to cope — you guessed it, our kids cannot contain the pressure that has built up inside of them. Often, they meltdown the minute they cross the threshold into our care, descending into tears, or isolation, or a spiral of negative self-talk or suicidal ideations.   

Damn it. We tell the schools over and over what they need to do and still they don’t comply. The mental health of our children declines. Their school-related anxiety and aversion increases, their challenging behaviors evident before and after school. And the response I’ve heard from staff? “What’s going on at home? Everything is fine here.”

I’ve even heard stories of some schools calling child protection services after a parent shares information about the child’s challenging behaviors. Gee, and I wonder why parents of autistic children are traumatized.

Sometimes, family and friends can also contribute to our trauma. While most of us have one or two angels who only offer non-judgmental support to us and our child, too many feel it is their right to tell us what we are doing wrong, what we ought to be doing. They judge us and say we’re too strict, too lenient, too structured, too disorganized. They look to blame us instead of looking inward and asking themselves: How do I better understand my autistic family member? How can I elevate this parent?

Grandparents or aunts or uncles who say, “That child needs some discipline,” or insinuate we are the cause of our child’s challenging behaviors earn our wrath and cause us tremendous stress. It is so isolating to realize those who should love you most villainize your child for being autistic — and you for being a loving parent. These family members often force us to cut ties to protect our child. Note to all: Don’t make us choose between you or our child. Our children will win every time.

How about we call this out for what it really is: the failure of the ableist agenda. Ableism is discrimination and prejudice against people with disabilities. The consequence of ableism is a system of support that is not effective. It means government programs do not teach children things that may benefit them (like emotional recognition and emotional regulation to help them to self-calm, sensory awareness and self-advocacy skill to help them to feel safe in the physical world and social understanding so they can connect with others and avoid rejection and social isolation). Ableism means that my child’s love of movies is an obsession, while your typical child’s love of stuffed animals is a collection. It means my lack of facial expression is bitchy, while yours is just… well… boredom? Everything autism is characterized in negative terms. 

The goal of ableism is to make our children not autistic. This goal causes me a lot of stress, because I have always loved my child just the way he is. He is one of the best human beings I have ever met.

Instead of trying to bash square pegs into round holes, I would prefer we provide, without condescension, supports, programs and accommodations that align perfectly with how our children experience the world and learn. I would prefer we teach social communication to our children so that we can address any gaps in their understanding, in consideration of their dignity, instead of shaming them for not understanding the neurotypical culture.

The challenging behaviors of autistic children that cause parents to report symptoms of PTSD don’t happen in isolation. It’s not that simple. It’s time to stop blaming our autistic children for their challenging behaviors and start working toward a truly inclusive society that naturally accommodates everyone.

To learn more about supporting autistic children, check out these stories from Maxine Share: 

Getty image via Halfpoint

Originally published: November 14, 2019
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