“I do want to talk about one thing in this story that is often ignored. PTSD and autism are a real problem, but not because of what we do to our parents, but because of every Autistic adult I know, including myself, I don’t know one that does not have PTSD due to being treated like a burden or a problem that needed to be fixed for their whole lives. That’s the story the media needs to tell.”
A reader posed an interesting question to me earlier this morning, in a comment thread on a previous post.
“No one gets mad at NT parents when they say this is hard or when their child struggles with something and so they have to give extra attention to them to resolve the issue. Why attack Autism parents for the same thing?”
Assuming the reader means “parents of non-autistic individuals” when they say “NT parents”… let’s break this down as kindly as possible (and feel free to chime in, autistic friends reading this):
You are not giving your autistic child extra attention. You are giving them the attention they require for that situation. If your non-autistic baby is learning how to talk? Are you giving them extra attention then? Or how about when they’re learning to read? Are you giving them extra attention then? No? Just different types of attention in order to learn fundamental skills? Hm.
What about when your non-autistic child enters school and starts bringing home vocabulary sheets and math workbooks? They ask you for help. Is that extra work on your behalf? Or hey, what about when they’re ten and need assistance putting together their science fair project… is that extra work on your behalf or are you just helping your child achieve their goals?
What happens when your non-autistic child requires your guidance whilst navigating the perils of puberty, over the span of say… ages 11ish until 18ish? Are you giving them EXTRA attention over those 7+ years? No, you’re giving them the attention they require to get through that time in their life, which is a normal part of growing up and figuring themselves out.
During all of that time, you’re making appointments with doctors for them, meeting with teachers and school administrators when necessary, purchasing school supplies & clothing, taking them to extracurricular activities, shuttling them between social engagements with peers, and all that comes with childhood.
So, when an autistic child is growing up and has different needs, how is that somehow extra, rather than just… different? It isn’t. It’s a different set of requirements, but not additional. Not extra.
When you use the terms like “extra”, “more”, and “harder”… it presents the child as being burdensome, as if they’re somehow taking away from your life where a non-autistic child wouldn’t have. As an autistic adult, this is exactly how it reads when I see those words. And it hurts. I hurt on behalf of your children.
If you are using those words so casually when writing online, I have to wonder if you’re using other words and phrases with the same connotation around your child. This attitude creates a negative stigma toward autism. Your child almost certainly knows they are different and hopefully they know why (they’re autistic). If you create a negative stigma toward autism, the child will then believe there is something wrong or bad about it and they may feel you resent them, for taking away from your life… causing you this “extra” work and being “harder” to raise.
It eats away at them, because throughout their life, they will be reminded regularly how different they are. If their own parent, who is supposed to love & accept them unconditionally considers them extra work and/or “harder” to manage… just imagine what the rest of the world thinks. It snowballs and gets worse… severely damaging the child’s psyche.
This post is getting pretty long so I’m going to wrap it up by saying this: before you categorize your child’s existence as “harder” or “extra” or “more difficult” please consider using words like “different” and “educational” and “more interesting”. You love your kid – or at least I hope you do – so why put a negative spin on their existence? There’s no reason to do it. It doesn’t help you, it certainly doesn’t help them. If you find ways to keep a positive mental attitude about things like this, it will help you find the positivity in even more trying situations. I promise.
Sensory overload manifests itself in different ways within those who are autistic. Young children tend to lash out violently, because that is what tends to come naturally to them. I used to throw things at my mom, to the point of putting her in danger. It wasn’t because I was angry or hated her; it was sheer frustration and I needed to release it. I didn’t know how else to do that other than how human nature told me to act toward something which was threatening my well-being (or what I instinctively felt was threatening my well-being): throw something and run.
Until a few years ago, when I started therapy, I didn’t understand any of the whys or hows. The throwing had diminished over the years, as I adapted other ways to vent my frustration in not knowing why I was so overwhelmed. This is also why many autistic individuals – especially children – have a tendency toward wandering/bolting. If and when a situation becomes too overwhelming or isn’t stimulating our brain in a way in which we instinctively find satisfying, our primal nature leads us to remove ourselves from that situation.
I encountered this last March, when I was overwhelmed by some potentially devastating information. I screamed, I cried, I didn’t know what to do. Rather than lash out and throw something or become violent toward myself (more on that in a bit), I bolted. This lead me to briskly walk down the street until something triggered in my head telling me I needed to stop, because running away wasn’t going to help me get away from the sensory overload. It was in my head. So I stopped, tried to process the information I had, and let out a wail. I collapsed on the lawn of the house of which I had paused. My mom and a friend talked me through it a bit and I came back to our house, where I did all I could do to expel that negative energy: I stomped my feet, I screamed, I cried, I flapped, I rocked, and everything that looked like the tantrum of a toddler.
Could I help doing any of this? No. Should I have done anything else? No. Thirty years ago, would I have lashed out violently at my mom or whomever was nearest to me? Absolutely. But because I am older, wiser, and have learned both through experience and therapy that stimming is okay, as long as it isn’t harming myself or anyone else… those primal urges to lash out physically at others & myself are still there, but I am able to use alternate actions to express my frustration and vent.
Throwing things changed as I got older; rather than lashing out at others, something in my brain switched and I started self-harming, as well as having constant suicidal thoughts. These were almost always present, or at least just bubbling under the surface, from about third grade until about four years ago (when I started therapy and taking Celexa to lessen the effects of depression & anxiety). The thoughts still sneak in occasionally (including yesterday when I was having a particularly bad-but-thankfully-brief panic attack), but I now have the emotional tools and understanding of my executive function to be able to deal with them… and most of the time that works.
Tantrums are typically willful non-compliance. Personally, I’d rather someone terms it as me losing my s**t than calling it a tantrum. Hell, I call it that sometimes. Being in my mid-30s, I’m not a disobedient child… I just can’t handle processing my environment and don’t know how to react at that point. I have little – if any – control over it. It wasn’t much different thirty years ago.
When it comes to autistic children, there are many instances where it is a sheer meltdown, rather than being a tantrum. I can distinctly remember plenty of times when I was reacting based on my brain shutting down into the most basic fight-or-flight response, rather than my just being upset. That still happens to this day. That’s a meltdown.
Those are the times when an autistic individual just can’t be calmed down, short of allowing them to decompress and reset in a stable manner. Many times this means being removed from the situation and allowed to work out whatever adrenaline has been rushing through them from fear/frustration/etc. Sometimes the individual needs to be held (or use a weighted blanket, etc.) to feel safe. Sometimes they need to stim.
In my case, I typically feel the need to throw something (usually a pillow at the wall) and scream. If I can’t be removed from the situation that’s overstimulating/triggering, it’s going to escalate. If I can’t remove myself from the situation aka bolt (my general response – and apparently, pretty common amongst many autistic children and adults), I will feel even more stifled and decompensate further. If someone tries to touch me, I will probably fight them off, because I hate being touched when I’m in meltdown mode. It will seem like I’m a toddler throwing a tantrum. But again, it’s not willful as it is with a child who just wants to scream about not getting their way. I really can’t help it. Same with autistic kids.
As I’ve gotten older (and finally managed to get some therapy), I’ve learned tactics to help me recognize and (usually) mitigate oncoming meltdowns. I remove myself from a situation before it gets to be too much. I stim without shame. I know what most of my triggers are and don’t intentionally expose myself to situations where I know they’re going to pose a problem. There’s a lot of hoops to jump through, but that’s life in a neurotypical word when you’re autistic (for anyone wondering if autism truly is a disability… there’s your answer; yes, it is, because we have to live in a world set up for neurotypical living, so we’re at a big disadvantage).
Yes, kids may start off tantrumming, but it will turn into a meltdown because their own noise/actions triggers them to not be able to process sensory input. But it’s very important to recognize the difference between a willful tantrum and a meltdown, over which they have no control. Learning to spot your child’s individual tells/symptoms for tantrum vs. meltdown is key. It’s also vital to know your child’s triggers. Look for patterns leading up to, during, and after these incidents.
If your child is verbal, discuss the situation with them after they are in a calm, collected mindset. Make them feel valued and safe. Let them know that you are not judging them and want to communicate openly with them, so you can work together to help them avoid feeling bad in the future. If your child is non-verbal, you can do the exact same thing… because non-verbal children can also communicate, be it via drawing, using an AAC device, flash cards, interpretive dance, smoke signals, or whatever alternate means works best for them. And remember… behavior IS communication.
But Giraffe Party, you ask, what about when law enforcement is involved? What if my child has a meltdown in a public place? Members of the law enforcement community will generally understand when you tell them your child is autistic and having a meltdown. More and more cops are being trained to handle these situations and work with autistic individuals, not against them or their parents (if the subject is a juvenile). I can’t wait for the day when ALL of them are able to recognize a meltdown and handle it appropriately. Then I can stop living in fear of being beaten to death or shot because I’m unable to be compliant when mid-meltdown. Yeah parents, you worry about getting arrested… I worry about being killed. But that’s a discussion for another time.
“Krawitt has been speaking up about vaccination for a long time now. He told me about going to a parent meeting at his daughter’s school just before the start of the school year, where a staff member reminded parents not to send peanut products to school, since a child or children had an allergy. ‘It’s really important your kids don’t bring peanuts, because kids can die,’ Krawitt recalls the group being told.
The irony was not lost on him. He told me he immediately responded, ‘In the interest of the health and safety of our children, can we have the assurance that all the kids at our school are immunized?’
He found out later from a friend that other parents who were present were ‘mad that you asked the question, because they don’t immunize their kids.'”
“Parenting an autistic child is hard work!”
“Parenting an autistic child requires extra work!”
Let’s get something straight: being a parent is hard work. Period. Nobody can deny that. There are struggles, there are rewards. There are lots of “Holy s**t!” moments and plenty of heartmeltingly sublime moments. No matter what your child(ren)’s neurology, being a parent is hard.
Parenting an autistic child doesn’t require extra work… just different work. There is no “extra” when a child is involved. ANY good parent would go to any length required to make sure their child – autistic or not – gets what they need to thrive and succeed. If an autistic child needs accommodations, then a good parent will make sure they receive them. That’s not extra work, it’s what is required.
By saying it’s “extra” work, you’re adding to the negative stigma of autism by implying the autistic child is a burden, causing you to put forth “extra” effort on their behalf. This can cause serious depression and self-worth issues in autistic people. We hear everything you say and later, your kids will likely read everything you’ve written about them online. The internet is forever.
If you’re struggling with the work involved in being a parent, respect your child’s right to privacy and see a therapist to talk about it. Or reach out to a trusted friend and/or family member to discuss the situation. You need a team, every parent does. The saying is, “it takes a village to raise a child” and we’d all do better to adhere to that. Venting online isn’t involving the village, though… it’s just preserving your frustration for your child(ren) to see when they’re old enough to use Google.
“But, Giraffe Party, why don’t you like Autism Speaks? You have the autism. They help you!”
That’s an almost direct quote. No, I don’t have “the autism” but I am autistic. No, I don’t support Autism Speaks, but they don’t support me, either.
You know who they do support? The Judge Rotenberg Center. Amongst a litany of other reasons for me to dislike Autism Speaks, their support of the JRC is high on that list. Here’s why…
“Some… are battling their own bodies for control each day, some are coming from homes so broken and troubled it’s just astounding, and many are simply neglected and left to be raised by siblings or television. I really had to stop and realize that my wishes for their classroom behavior were superseded by their own complicated lives.”
This blog is a place for me to write and archive my missives on being autistic. It was started at the urging of my mother, my friends (some of whom are autistic, some of whom are parents of autistic kids, some of whom are just my friends and want to know more about this aspect of my life), and members of the autism community.
I do my best to be as diplomatic as possible and I welcome questions and input, as long as it’s respectfully done. Chances are, I will use questions from parents/caregivers/educators/professionals as a prompt to write, rather than responding directly. Names won’t be used, nor will private messages be quoted unless you give me permission to do so.
I can’t provide answers to every question, but I can try. And if I can’t, I’ll do my best to point you in the right direction. If you’re curious as to other pages to follow or other places to get information, check out the Links page for more reading. Many autistic bloggers, parents of autistic individuals, autistic information groups, and autistic advocacy groups are represented (along with stuff I just generally dig, so you can get a sense of who I am… sort of).
A note on commenting: please do not use large blocks of text. I can’t read or process them very well (if at all) and I do want to be able to read, if not address, everything you have to say. Paragraphs are key to my being able to take in everything. It helps me better organize my thoughts.
Feedback is valuable and an open dialog is important to me. This is one of the accommodations I must request in order to keep the conversation going. Thank you in advance!