Neurodivergent parenting help
July 12, 2022 5:52 PM   Subscribe

Looking for mindset help and concrete resources, and please bear with me as I'm sure I am going to flub some of this discussion. My son is turning into a control freak and I am losing my patience with him more than I'd like.

It's all ASD in the current discourse but some use "levels" or "high functioning" or whatever. For clarity in context, this is a post about helping a level 1 parent deal with their level 1 child. In other words, he is verbal, and has some self-management ability. I expect that he will be able to live more or less independently as an adult. We are months away from professional intervention due to wait lists. I am trying to research best practices and a lot of what I find is... Puzzling and also a bit infuriating?

Like we have social expectations. Some can't be met by someone on the spectrum and they may be alienated or avoid those things on their own. Others can be met with support. I feel like I am expected to give my son grace for things that will definitely bite him in the ass as a grown up, and I don't know how to feel about that. My instinctual reaction is hell no, this is disrespectful to me as his mother and will cause him to be disrespectful to others in the future and he needs to learn how to give and receive respect instead.

I would like to not raise an entitled child. I see a LOT of vitriol about adults with autism who act like jerks and excuse it away as autism and fellow autists have a huge issue with this. I don't want my kid to think it's ok to act like a jerk for any reason. Even if it's a meltdown, you come back and apologize and repair the relationship. I get snappy when I'm overstimulated, sometimes properly angry. I'm responsible for managing that, and for repairing things if my snappiness has caused problems for others. I expect my kid to develop that kind of social-emotional awareness over time. In some states he's very empathetic all on his own, with no prompting whatsoever. But the last few weeks he's been really pushing to control everything, frequently argumentative (even about being argumentative), shouty. His school thinks it's the lack of nap but he was not really "napping" for many months. I think it's being off his routine during their conversion of his Pre-K class to a "summer camp" with new teachers, often not the same ones each day, and generally less structure.

You take a grumpy, angry person and lots of people will give feedback that amounts to "don't let them control everyone with their outbursts/don't walk on eggshells as this is enabling. Even if their poor behavior can be a consequence of medical issues. But I'm supposed to enable my autistic child by giving into his need for control? How do I balance his needs with mine/others'? Today he decided I had to apologize for interrupting him once we got home, even though I'd already done so in the car. No explanation for why. Everything escalated and it appears that I had no way to avoid him getting upset aside from giving into what he wanted. I had shown him lots of empathy already. This was about control. I give him as many choices as I reasonably can, and strive to keep things as predictable as possible.

I worry if I give into his control needs like many experts recommend that he will become an entitled jerk in the future. I am working with him to identify his feelings and practice coping skills. I put him in time out after his outburst today but allowed him to get out of it sooner once he did a guided breathing exercise with me. I want him to advocate for himself but also learn that his control stops where other people start, and vice versa. Not sure how to teach that at age five but I'm trying.

I'm really hitting a wall here as the majority of our interactions the last couple of weeks involve some amount of friction, arguing, yelling due to intensifying sensory issues (e.g. because he senses a drop of sweat on his back and it's routinely over 90 degrees here, so that has happened every day).

I have executive functioning issues of my own and so does my partner. I already manage at my upper limits. I can't really plan ahead to pack ice packs in the car for him, for example (at least not consistently, and it's worse when the plans deviate from expectations so I try not to start a new habit that I don't think I can maintain as it causes bigger issues).

I don't know if a lot of this is just kids when they are close to age six but I am kind of broken. I struggle with philosophical concerns about catering to the control issues beyond what I already do by offering choices when feasible.

A lot of what I'm reading from the neurodiversity movement suggests I'm supposed to cater to him. I do not believe I'm setting him up for future success and happiness by doing that more than I am currently, and feel like it's more fruitful to teach him methods of self regulation and self awareness so he can manage these energies for himself. Am I being naive or cruel by not letting him literally order me around and try to force his way? Where can I learn more about the various approaches to the issue of autism and control freakery so I get a nice evidence based understanding of this issue? Any other resources you'd recommend as a parent of an autist? I understand that this is a touchy subject. If you need to call me out for something please use MeMail. Thanks.
posted by crunchy potato to Society & Culture (31 answers total) 13 users marked this as a favorite
Oof, a lot to unpack here. One thing I would suggest us that you can validate his feelings without giving into his request. I.e. He demands you apologize a second time for interrupting him in the car. You say "hey buddy, it seems like you're still upset about what happened the car. What can we do to help you feel better?" Then offer choices. If he demands an apology again, say "remember, I already apologized in the car! What would you like to do to make yourself feel better?"

Arguing with him is only going to stress both of you out, potentially leading to more conflict and a greater need for control later on. Don't argue. Validate the feelings and redirect. At this age redirection is the name of the game.

Timeout doesn't really work on autistic meltdowns, especially after the fact. Manage it in the moment. If he throws things, have him pick them up once he's calm. If he breaks something, he may need to have certain items taken away until he can be safe with them. Etc etc. You want the consequences to be natural and connected to his behavior as much as possible. And, most importantly, you want to figure out the cause and prevent, prevent, prevent. Does he have an unmet sensory need? Was there a schedule change? Does he need more structure associated with certain routines?

Gently, it sounds like his behavior may be triggering to you and that's informing your interactions with him. You need to take care of yourself first, to make sure you are as fed and rested as possible, to honor your own needs and routines and create an environment that you can be successful in. Only the can you meet your sons needs. How can you better honor your own needs and reduce your own stress? Would therapy help? Does your spouse need to do more so your load is lighter?

If nothing else, if you seems yourself becoming angry or getting sucked into an argument with your son, please please please just walk away. Absolutely nothing good can come out of getting into a power struggle with a 5-year-old.
posted by Amy93 at 6:10 PM on July 12, 2022 [16 favorites]

I don’t have time to respond properly, sorry, but with myself and my kids I found a community which was able to support me and my wife during similar issues. These communities have content, podcasts, and small group settings. This helped me find answers to some questions similar to your own as well as confident in how to lead my children. It also helps to connect with others who are struggling with this and not feel alone.

Two communities I personally recommend and I say are worth checking out are ‘peaceful parenting’ with Sarah rosenstein, and mother flipping awesome with Abigail Wald. See if they resonate with you.

Similar is ‘celebrate calm’, which my wife has connected with more than myself, but it’s good nonetheless.

The explosive child is good from a book perspective.

Mefi mail me if you want more.
posted by escher at 6:12 PM on July 12, 2022 [3 favorites]

I think there are sometimes things that are separate from Autism, but lumped under the same umbrella because they sometimes present alongside Autism (especially in boys, and may even cause many boys to get diagnosed, despite the diagnosis not being complete or even accurate sometimes). The people I know with Autism, some with high support needs too, are not demanding to control everything in this kind of way, are certainly not demanding apologies or other very specific emotional responses from people. Is it possible this is a parallel issue, and not about ASD and therefore can be treated in a different way? I have ASD and do not think it excuses bullying of others in this way, and I'd be surprised if most others with ASD wouldn't agree with me.
posted by asimplemouse at 6:49 PM on July 12, 2022 [4 favorites]

My mom and I are both neurodivergent and have clashing sensory needs and I had a traumatic childhood, so take this advice however you want.

For me, whenever I was angry with my mom and would get demanding, it's because I felt like her demands of me were unreasonable and were basically demands to force me to stop doing whatever I was doing instead of actually taking time to help me downregulate and articulate my thoughts and feelings, and I felt not listened to, so I would end up reciprocating similar behavior. What did help stop those behaviors between both of us was her empathizing and problem solving with me, like I remember being so disgusted by my own snot in a shower that I really shut off the water and got a tissue because I was so uncomfortable with using the shower. Instead my mom was empathetic and encouraged me to use the shower as a better and cleaner way to use it, and it really isn't so bad if you just relax into it. She also started up meditation as a regular practice.

I'm guessing both of you have extremely fried nervous systems and could use some support for downregulating together during stressful situations? Sensory Parenting is one term that comes to mind.
posted by yueliang at 6:51 PM on July 12, 2022 [6 favorites]

The thing that stuck out to me was the school mentioning the lack of a nap. Even if he hasn't been napping he may really be missing taking a quiet break in the middle of the day. I don't think it's reasonable or possible for you to construct a ball of perfect comfort around him and I think you have excellent goals for him. But it seems to me that you may be seeing a need for control & interpreting it as a need for power, when it might merely be a symptom of his need for everything to stop changing & being so uncomfortable all the time. Again I don't think it's on you to mitigate every discomfort & change that arises. But it might help you to be calm if you think about it like you're both on the same team and dealing with the same heat & the same stuff. And if it helps you be calm it will help him be calm too, over time.
posted by bleep at 7:10 PM on July 12, 2022 [8 favorites]

Another thing I want to add as a way to think about it is that he's only been in the planet for 5 years. That's not enough time to remember about how long you're going to be uncomfortable for when it's hot out, and if every sensation on your skin is sending you loud signals, and you don't know how long it's going to last, it's understandable that that would drive someone a little crazy. I don't mean this as a call out, I just mean it as another way to think about his behavior as an alternative to "he can't have everything his own way."
posted by bleep at 7:15 PM on July 12, 2022 [13 favorites]

One thing that helps me is remembering that control isn’t always about choices once a kid is past toddler age. Like if you were given this paradigm, “you have to eat either a banana or an apple, right now, choose one”, you would probably still feel you were being externally controlled.

Learning about what exactly makes your child feel more in control of their life might help. I recently asked a child what their favourite moments were for the day and was surprised to hear what their favourite part was. It let me know what I could offer that would really make the kid feel happy and regulated - and it was way simpler than I expected - it was just being allowed to knock down a firmly built simple sandcastle an adult had made!

So like, if that kid got a solid 20 mins of sandbox play every day, especially with a predictable ending / transition routine, I would expect them to be more regulated. The sand play with simple predictable transitions would almost function like meditation. I don’t think they would necessarily need to be given verbal choices around playing in the sandbox in order to feel in control - The activity itself is what makes them feel in control, not the choices around it, if that makes sense. (And they would still hate the transitions!)
posted by nouvelle-personne at 7:28 PM on July 12, 2022 [6 favorites]

Best answer: This is going to be semi-brief because I need to go start my own routine, but I want you to know this is completely normal behavior for a five year old.

Your child is not going to turn into a jerk as an adult because they're demanding and need control as a five year old. This is an important part of their development, particularly as they move through the stressful transition out of Pre-K. Give yourself grace and don't take this behavior as a reflection of your parenting failing. It's striking to me that this has only been going on for a few weeks and you are running all the way to adulthood, concerned that if you "give in" now then you'll ruin his life. I wonder if you're feeling a lot of pressure to be a good parent and it's making any conflict with your kid bigger and scarier than it needs to be.

Until I got to the Pre-K sentence, I thought you were talking about a teenager, because the sort of expectations you have for your kid--and, by the same token, yourself as a parent to teach this to your kid--are really beyond your kid right now. The ability to self-regulate after a meltdown and come back and repair the relationship is very complex developmentally. It's okay that he can't do that right now. I know it's frustrating for you, but I think it's made more so by the expectations you have for yourself to teach him these things. It's okay. You're doing enough. You aren't a bad parent for giving in sometimes, or even a lot of the time during a period that's extra stressful for both of you.

For autistic kids, routine is extremely important. If his is disrupted, he's going to be much worse at regulating his emotions or handling sensory stuff. This is not a time that he can learn better techniques; we don't learn when we're overwhelmed and stressed. He needs extra help to cope right now to get through this disruption to his routine. If you can't do that, then think about ways you can reduce his need to cope. What that looks like for your family I don't know, but in my own life that looks like fewer outings, less socialization, and just generally reducing the stimulation and activity in my life wherever I can until my routine is stabilized. But trying to teach him more skills right now will just add to the overwhelm and friction. You don't need to teach him this now. There will be other opportunities. It's okay.
posted by brook horse at 7:30 PM on July 12, 2022 [54 favorites]

I’m an autistic therapist, though not a parent. I’ll defer to others for direct parenting advice, but wanted to offer two guardrails: 1) there are plenty of things you’re going to do with your six-year-old that, if he doesn’t outgrow them, will not serve him in adulthood—that’s fine and normal; 2) you can absolutely be neurodiversity-affirming and not let your kid be a tyrant—it’s about working with his brain rather than against it, including in areas like accountability and distress tolerance.

Also if you don’t have a neurodiversity-affirming therapist for yourself, it might be helpful both for your well-being generally and also as a resource for when you feel stuck in your parenting. Feel free to message me if you’d like help finding someone.
posted by theotherdurassister at 8:54 PM on July 12, 2022 [3 favorites]

Thank you for asking this question as it's something I'm struggling with myself in a different way.

I'm not a parent and have very little experience with small children so take my advice with that in mind.

Your son is very young, and the way you interact with him now isn't necessarily going to set him up for a particular pattern of behaviour as an adult. You're going to be adjusting your approach as the years go by. Expecting different things from him as he matures.

I wonder if this topic is particularly painful for you for the same reason it is for me? I'm self diagnosed autistic, 50,and female. My parents were excellent parents in many ways, but they also let me down in some fundamental ways.

Our family is very bad at dealing with conflict. Strong emotions are to be suppressed, and apologised for. I could go on about all the details, but the result is that I was raised as a person who is "not entitled" and very much aware of having to hide my autistic self in case people are prejudiced or offended.

And I'm a mess. Wracked with profound anxiety and depression. Having to learn basic self care techniques at 50, that I should have learned as a child.

I'm struggling with this exact same question as you have about your son, but about myself. When should I just suck it up and deal? When should I ignore my own discomfort and focus on other people's needs?

Because the thing is I can't negotiate with my brain. It needs what it needs. I can't "learn" any better how not to be overwhelmed or overstimulated. Past a certain point, I can only find ways to protect myself and recharge.

I struggle with ideas around how best to raise a child. Is catering to their needs allowing them to be selfish, or setting them up to be entitled in a world that will judge them for it?
At what point should they learn the same lessons I had to learn, of self suppression and self control?

Since good autistic parenting was not modelled for me I have no idea what it looks like.

For me, it's all mixed up with my own pain and resentment. It's hard to recognise that my needs weren't met by my parents, and that the coping methods I developed don't serve me well.

Maybe you have something similar going on?
posted by Zumbador at 9:35 PM on July 12, 2022 [12 favorites]

Best answer: Until I got to the Pre-K sentence, I thought you were talking about a teenager

I was literally about to write this. Because

Even if it's a meltdown, you come back and apologize and repair the relationship.

That's absolutely where you want to get to, but even the most neurotypical of neurotypical kids would still not regularly be initiating apologies or working to repair relationships until they were a good few (or many) years older. I'm an adult and I still have trouble with this sometimes, most of all with my parents -- parent-child relationships can push lots of special buttons on both sides.

With respect to repairing relationships, you really want little kids to be totally secure in their relationships - even when the flip side of that is that they take you for granted. You might want to frame apologies as being about repairing the other person's hurt, not repairing a (by implication, fragile) relationship.

I don't know if a lot of this is just kids when they are close to age six

Not all kids, but lots of kids. If you've been reading mostly materials aimed at parents of autistic kids, I'd cross-check those with more general parenting resources to get a sense of the range of typical behaviors at different ages.
posted by trig at 11:36 PM on July 12, 2022 [19 favorites]

Best answer: I’m supervising camps for kids this age. I was going to skip your question because I’m less familiar with parenting kids with ASD although I will note some of my counsellors are on the spectrum and doing great, empathetic work.

This is developmentally on track for your son. The degree to which he experiences sensory issues or has meltdowns may well be different. But the throwing all his control needs at you the parent all the way home in the car? On track. Just look at the summary of the Louise Bates Ames book for 6 (which he seems to be entering.)

My worst parenting periods have been when my anxieties or fears caused me to project developmental stages forward 20 years. You have at least a decade to work with him on this.

I hesitate to give practical advice because it might not be helpful in your situation but this was the age at which at lot of the techniques in “How to Talk So Kids Will Listen…” worked for me with my kids. Also though, I used to sit in the car an breathe before picking them up because I really got the stress from their days thrown at me.
posted by warriorqueen at 2:48 AM on July 13, 2022 [11 favorites]

Yeah raising an autistic kids is a lot. It's a lot for you and you're obviously doing a ton to support him.

I have a blended family where my partner and each both brought one neurodivergent child. They drive us crazy when they are too stressed to function and meet expectation. Your son is too stressed to meet your expectations right now. Reducing expectation is your way to get out of this. Cater more and ask less.

Additional supports are actually going to help a ton with this. OT is going to help a ton. If you're worried about social stuff, speech may help. Working with therapists at private clinics and at school are going to help him cope and give you tools to cope without using as much of your bandwidth. Your child will need less catering over time and learn to support his own needs.

In my area, private clinics are the go to for OT with shorter wait and better service than the big hospital associated clinics. We're so thankful for ours and it's not more expensive. But yeah, cater to him until OT. Supporting him more will help him function better in the short term and therapy will help him function better in the long term.

I would not at all worry about your child using autism as an excuse to be a dick. Sometimes people are just dicks but I've never met any autistic adults who did this to me. Maybe you've just been unlucky.
posted by Kalmya at 4:31 AM on July 13, 2022 [4 favorites]

Best answer: It sounds like you've been trying a lot of standard parenting advice and it's not working well for whatever reason. The dropping expectations advice upthread is evidence-based, it's from clinicians who have done work for years with autistic children. Things like time-outs upset most kids, to a neurodivergent kid they can throw off self-regulation even more strongly because they are just so entirely unfair and most autistic people have a very strong sense of justice and see it as a violation of their personal rights (I would say this is true of ADHD as well). There's a lot of standard advice that when you consider it, doesn't make sense. For instance if you demand apologies from your child before they want to give them or understand, they learn that they can also demand apologies. If you blame your child for how you feel they learn that they can blame you for how they feel. Changing this dynamic, if you want to, will take time.

In my experience as a parent of two, at least one of whom is autistic like me, I've learned that I get the most mileage out of dropping expectations as needed (and behavior issues are a sign that they're overloaded), keeping our lives fairly simple and not overloading myself either, and relating to my kids like the one-day adults they will be, I try to talk to them and treat them respectfully. I got push-back when my son was young and it looked like I was being too soft when he was having a hard time say in public (preschool and kindergarten years in particular were very hard, and again I had no idea he was anything but "highly sensitive"), but several years on most people around me say that he's a kind, helpful, thoughtful kid who gets along well with others (and who unbeknownst to most of them, needs loads of down time when he's not at school or at an activity). I didn't spoil him or give him a sense of entitlement by treating his meltdowns and other emotional issues with kindness, in fact it seems the opposite has happened.

As an example of what respectful treatment to me looks like and how it's at odds with standard advice and treatment of children, my son used to have a lot of trouble at the dentist. He would scream, he would run, he would refuse to open his mouth (I didn't know at that point that he/I were autistic). Over time as he got older he came to understand the reason for dental care, and the treatments/visits got better. Last year he needed a filling and two teeth pulled, and the dental hygienist suggested I just not tell him and let them basically surprise him so that he wouldn't refuse treatment (!). I said I would just talk to him, and she seemed bewildered and said it wouldn't work. I told him what the appointment would entail, why they needed to do it, what he could expect, what supports he was getting in terms of pain relief, that he might feel wonky from the laughing gas afterwards (which I let him choose as an option) and how the rest of the day would go. The appointment went fine, he complied as best he could as needed, and I was not surprised, because I knew he was old enough (at 10) to regulate himself somewhat and he'd gotten better at the whole dental visit experience, but the key part was that he understood why he needed to cooperate and why he needed the treatment. When you explain the why and stick to only things that are truly necessary, things go better. If I had surprised him he would have reacted with a lot more fear during the treatment, he'd have more trauma around the whole thing, and he wouldn't trust me when I tell him that an appointment will just be a cleaning or not a big deal.

I hope this doesn't come across preachy, I remember how confused I was when I started to notice that my child was different from the other kids and had stronger reactions and different behaviors. It's not easy, and managing yourself as a parent with a child who is having a hard time is very difficult, but trusting your child's innate goodness is a worthwhile thing to consider in terms of loosening the control. Your child wants to please you, your child wants to be close to you. You've got to trust they're doing the best that they can, and if they could do better, they would. If you aren't already, adopting more of that attitude and conveying it will help him to regulate and meet you where he can.
posted by lafemma at 9:03 AM on July 13, 2022 [11 favorites]

Another thing I want to mention is that a baby's only job is telling you when they're uncomfortable and in distress. Your son is doing his job just like he's supposed to. The alternative is he just quietly & politely passes out. That's not going to help you or him.
posted by bleep at 10:03 AM on July 13, 2022 [6 favorites]

He needs a lot of empathy for being SIX apart from everything else. His brain is throwing tons of information at him all the time and he’s sorting through all of it because autistic brains take in something like 90% more stimuli because of not filtering well. This is on top of kids that age *already* having to do a ton of mental and emotional maturing and work throughout the day. What he needs from a parent IS empathy.

I’ll also say that your comment about sweat and heat really jumped out at me. Heat intolerance is incredibly common with autism, again on top of children having worse heat/cold regulation than adults. Heat exhaustion makes people snappy and grumpy. I would strongly suggest that he needs more support in staying cool. Whether that’s a vest with ice packs or a school situation where there’s good climate control, this needs to be addressed.

Giving empathy to your kiddo isn’t going to make him entitled. Kids are empathy sponges. My observation is that it’s actually the kids who DON’T have empathy for their feelings modeled and given that turn into little monsters because they’re trying to fill that emotional hole with anything they can get out of people. Because they don’t have the emotional maturity to ask for what they really need which is someone validating how they feel in a way that makes them feel seen and cared for. In the situation of needing a second apology - I can understand that! It’s frustrating to feel like you are apologizing twice. I would talk about it. “Ok, when you have a chance to emotionally regulate a little more, I want to hear about what was so upsetting for you so I can give an apology that addresses that. But it has to wait until you have time to think about it and aren’t so upset anymore, ok?” Because it lets him know you care about whatever is going on that’s so wrong.

Basically it sounds like his bucket of tolerance has completely overflowed. He’s starting with a small bucket because he’s a kid and because autism. And then you add in a ton of change that has to be integrated, uncomfortable heat and sensory situations and his bucket is totally full. It’s overwhelming his system. That’s not being entitled. That’s him trying to tell you what he needs to help regulate and syphon off a little from his over full bucket.
posted by Bottlecap at 1:11 PM on July 13, 2022 [7 favorites]

I can't speak to parenting, but I can say that for adults, we get a lot of choice around structuring our lives outside of the immediate moment. So you might not get to choose what your hostess is serving for lunch, but you get to choose how often to eat at someone else's home. You may not get to choose whether there will be a long wait and crying baby at the doctor's office, but you can choose whether to go to a noisy restaurant.

For kids, those structural choices fall on the parent, and one form of "lowering expectations" would be "understand that your child may never become someone who enjoys going to noisy restaurants". Especially if you often force yourself to do things you don't enjoy, this may take some thinking and grappling with.
posted by Lady Li at 1:39 PM on July 13, 2022 [2 favorites]

(to clarify, that's not a specific example - just, maybe if your kid is having control issues you can give him control *in some areas* or reduce the stimulation and demands on him, without it meaning giving him control in inappropriate areas.)
posted by Lady Li at 1:41 PM on July 13, 2022

Response by poster: Thank you all, great food for thought here.

I do give my child tons of empathy most of the time, even for sensory stuff, meltdowns, changing plans/steps in a pattern, but the last couple of weeks I have no extra room for the quick escalation to loudness/intensity and it's harder. He has an outburst almost every day on the way home from school. Even when I'm steeled for it, it's hard as I am sound sensitive myself. And admit that I tell myself I am a failure if I have all this knowledge and these tools and none of it is working. Often he is protesting or getting loud and arguing within the first ten minutes of the day as well, so there's just been a LOT of these tense moments making it more likely that I will dread and expect them and not have the emotional space to handle them in an ideal way.

Redirection is hard for me philosophically to apply it broadly as I do not want to cross over into training my child to use avoidance as their main method of coping which is often what happens when you, for example, tickle them and make them laugh to force them away from whatever is causing big negative feelings for them. I believe kids also need to learn to sit with, digest and process big feelings vs diversion/distraction so that they can learn to tolerate their distress and find ways to cope or use the emotion as motivation to act. Maybe the idea of learning to sit with big feelings is not appropriate to apply to someone that has a "sticky mind".... or maybe it's a skill that I am trying to teach too early. I don't object to giving empathy. I just object to what seems to be primarily an issue of trying to control another person.

I really appreciate reminders that some of this is probably just normal childhood development. I have downloaded that book from the 1970s as it seems to fit and even if some details are different in 2022, it's reassuring to see someone describe my experience as "normal" vs "big fat failure".

I have started bringing a snack and a screen for the ride and will also wear my Loop earplugs so the outbursts are buffered and I have more emotional room to absorb stuff for him. Maybe let him choose our dinner once a week as that has also been a source of outbursts when he cannot dictate us eating out multiple times a week. I've also restarted his visual timer/schedule system which worked well last night and this morning at outsourcing some of the prompting, giving me some emotional energy back.

Heat - as far as I know it's just when he's in the car with me that he's this suddenly upset about the sweat and heat. I've messaged his pediatrician to see if he can qualify for OT for sensory support even though he's not got the diagnosis yet. He also cannot tolerate his lips not having any moisture on them, bites things, puts things in his mouth, spins around randomly, etc.

Also last week he had COVID unbeknownst to anyone which made him even more cranky, and this week the parents have it so it's just hard all around at the moment. I really do try to use empathy, gentle and respectful parenting most of the time. My partner has in the past thought I was too easy on him at not forcing "obedience" and often when my partner is losing patience I'll remind him in an aside that kid had a long day or kid is adjusting from being away for a week or whatever context, but my partner's own executive functioning is such that he cannot remind me of that stuff when I'm trapped in my own desperation. I tend to think, generally, that when reasoning works then why force something? However reasoning has not been working and I have not had the stamina to contain his stuff recently.

I guess I am struggling to understand how the overwhelm translates specifically to "here's this rigid requirement you must meet and if you don't I am going to get stuck and escalate it." I offer tons of empathy for the general context and everything that I can guess is making life harder for him, but struggle with finding it when it feels like he's just trying to force me to do something.
posted by crunchy potato at 2:27 PM on July 13, 2022

One probably wouldn't expect an adult to "get over" the fact that a restaurant is too cold, just that the adult should pack a sweater. Similarly, there are things you, the adult parent can do, to set your kid up for success.

Regarding the the sweat and clothing issue have you tried different clothing materials/types (e.g. cotton vs a 'cool wicking' fabric or short sleeves vs long sleeves vs tank top)? Can you leave a (paper) towel in the car/ bag to dry off? Can you put a sunshade on the window closest to his seat? Can he wear a visor or sunglasses? Is it time to turn on some winter themed songs?

It sounds like your son is exploding with you because he feels safe. It seems unlikely to me that your child is trying to manipulate you. I think it's more likely is that he's doing the best he can with a not fully developed tool box. Granted five year olds in general don't have a fully developed tool box either, let alone your kiddo with additional challenges.
posted by oceano at 2:52 PM on July 13, 2022 [5 favorites]

Best answer: I guess I am struggling to understand how the overwhelm translates specifically to "here's this rigid requirement you must meet and if you don't I am going to get stuck and escalate it."

This is just how many (though not all, as it doesn't seem like this is an experience you have) autistic brains work. Because of the constant overwhelm, autistic people need more predictability and rigidity in their lives. Rigidity requires less processing than trying to examine a situation from multiple perspectives of shift your understanding. To do so requires cognitive resources autistic people often don't have when they're dealing with sensory overload or overwhelm. Often, the rigidity autistic brains seek is not necessarily logical--sometimes, our brain creates a "rule" that takes on more significance than makes sense. Following this "rule" eases anxiety and stress because it increases predictability. This can extend to wanting others to follow those rules too. For example, when I lose something, no matter how insignificant, I will search for it over and over and over again until either I find it, or my partner gets up and looks too. If my partner doesn't look for it, I'll just keep searching over and over, often looking in the same places 10 times. But if my partner gets up and looks, my brain is convinced that it isn't going to be found, and so I can relax (somewhat). I don't demand my partner do this because I'm an adult who tries to manage myself and not put strain on my relationships, but I might ask for them to do it. If I were six, with less coping skills, I would definitely scream and cry for my designated person to look for the thing, regardless of how unreasonable that request was in the moment.

I'm not saying this to say you always need to do exactly what he asks, but give you context for how one thing translates into another. His brain may have decided, for example, that apologizing twice means you really for sure are definitely sorry. And not getting that apology is anxiety inducing or frustrating or stressful, because now he isn't totally sure you're actually sorry. There's unpredictability, and so he demands what he needs to make it predictable again (even if it isn't logical or reasonable). This is something that you often have to be a tide with--sometimes going with, sometimes pushing gently against to try and help overcome it. But when you are both stressed out and overwhelmed is not the time to push.

Of course, if what he's asking is overloading your sensory system or executive functioning, you may not be able to give that and that's okay. But it sounds like sometimes it's less about that and more like you feel like you're failing as a parent if you give in. Try to let go of those instances. He's not doing it to control you, and you're not "letting him win" (not your phrasing, but how it's often framed) by catering to his rigidity when doing so is more a matter of principle than a matter of it being too difficult (such as saying "sorry" a second time).

as far as I know it's just when he's in the car with me that he's this suddenly upset about the sweat and heat

Oh car rides are so extremely sensory overwhelming. It is a constant attack on your nervous system in SO many ways. The movement, the noise, the quickly moving visuals--it's horrible. I often become anxious, irritated, frazzled after a car ride (and I'm never the one driving) because it is SO much sensory information. It is very likely that he can tolerate the heat in most instances, but once in the car there is so much going on it's the "last straw" and also likely the only thing he can verbalize. I was not able to verbalize any of the difficulties I had with car rides until well into adulthood. He's experiencing many overwhelming things, but the only one he has words for is the heat/sweat issue, so that's what he latches onto. It's not about that specifically or in general, it's just the one thing he is consciously aware is bothering him so he's trying to fix it.

Things to make car rides easier: reducing the amount of stops and starts (take highways instead of backstreets when you can), encouraging kid to use the "oh shit handle" (so that they don't get jerked around so much/don't have to use so much balance), weighted lap pad (hard w/the summer issue, but if you can get a small one it may help more than hurt), fidget toys (I've seen a yoga ball shoved between the seat for young kids to kick, not sure if there would be space for older kids w/longer legs; also textured fabric hanging off the back of the chair in front that the kid can grab/stroke), noise cancelling headphones, not playing music or the radio w/o asking if he can handle it right now, minimizing talking... you may find these things are helpful for you too. As I said, I didn't realize how stressful being in a car was for me until well into adulthood.
posted by brook horse at 3:15 PM on July 13, 2022 [8 favorites]

I wonder if this reframing helps (sorry if this is redundant with what others have said): your goal is to help him understand his sensory and other needs so that when he is an adult, he can manage them on his own, whether that is opting out of dinner at a noisy restaurant, or deciding to grin and bear it because it's for work and then earmarking decompression time later, or bringing discreet earplugs, or some other strategy. And I think that has to start with helping him problem-solve, doing some or most of that work for him, because, as noted, he's five.

I have a parent who can only be happy when she's controlling everything in her environment, and my god, that's a miserable existence in old age, when you can see that control slipping through your fingers a little bit more every year. (I get temper tantrums by email when her assistant takes the trash out "wrong".) So I know where you're coming from. But you have the gift of understanding now, at five, that he may need some help here, and you have lots of time. And even neurotypical kids need to learn self-management skills, even if what that means looks different. And kids grow and change -- autistic kids, too.
posted by eirias at 3:30 PM on July 13, 2022 [1 favorite]

I guess I am struggling to understand how the overwhelm translates specifically to "here's this rigid requirement you must meet and if you don't I am going to get stuck and escalate it." I offer tons of empathy for the general context and everything that I can guess is making life harder for him, but struggle with finding it when it feels like he's just trying to force me to do something.

BTW I think you are doing great and your child has a great advocate.

Again, not as familiar with parenting kids with ASD. BUT when my child was originally losing his sight at 3, and now again at eleven that the surgery has not prevented a further, sharp and sudden loss of vision...I have to say that each time he became the control freak of control freaks...this round he is able to express himself with many more words but it so clearly is related.

(Except, when he started this having to dictate everything and plan everything at eleven, I had him in for assessment with our family doctor because pandemic + OCD runs in my family, without much of a sense of whether we should go for a psych referral. As it happened the 6-month eye appointment just popped up and his eye doctor first gasped and then left the room to first call a consult and then cry. As soon as we did what we could (he went from far sighted to very near sighted in literally 6 months so he was wearing glasses that were making his bad vision worse), the control issues eased up immediately.)

I'm sharing this just to let you know that totally, issues with perception can come up that way.
posted by warriorqueen at 4:04 PM on July 13, 2022 [1 favorite]

Best answer: I feel like I am expected to give my son grace for things that will definitely bite him in the ass as a grown up

you are expected to! every parent is! no independently functioning adults have broad social permission to act like 5 yr olds, not even like extremely well-behaved 5 yr olds. and all 5 yr olds are indulged to a degree that no adult is. they have to be.

however: he has a personality as well as a neurological category, and maybe his personality is obnoxious and controlling and tyrannical at the moment. the special allowances you have to make for him, that maybe he will always need, that he is entitled to, have to do with what he is permitted to do with himself. i.e. in certain circumstances you have to let him do what he needs to do without interfering, and not force him to do what he can't do. but that does not mean you have to let him tell you what to do, now or ever. you do have to accommodate him; you do not have to humiliate yourself for him and obey him.

so like, if he hates that you won't do as you're told and he needs to lie on the floor and scream for a while, you have to let him (although you can require him to do that in his own room, and you can enforce that by physically putting him there.) if he doesn't want or isn't able to talk to you, you can't try to force him. but if he "needs" you to apologize over and over and over, if he "needs" you to do as he says so that he can feel like he's in charge, you do not have to do that and in fact should not do it, even if it legitimately distresses him to not get what he demands.

He has the right to say No to things he cannot do and things that will hurt him to do, even at 5. he has the right to ask for what he wants, no matter how unusual or unrealistic his desires may be. this will be influenced or limited by his neurological situation for sure, and that is fine. but you still have the right to say No, like any other human being. even the obligation to say No sometimes, to teach him that you are a separate person and not his appendage or servant. all children have to learn this at some point, if you believe some psychologists, and none of them like it.
posted by queenofbithynia at 4:55 PM on July 13, 2022 [4 favorites]

The only piece of knowledge I can drop on this is that sometimes there is going to be an emotional escalation and there’s nothing you can do to prevent it. There will be many many times when a melt-down is coming and in the moment (as opposed to big picture, like changing the daily schedule) there is no magic thing you can do or say that will prevent that metal-down or help him regain emotional stability before the top falls over and stops spinning. There are big things you can change that will mean fewer of these occur, but derailing a tantrum or demand once the buildup has started is not always or even frequently going to be a thing in your power to do. If you take the idea of avoidance out of the situation, what do you do instead? Model the behavior you want him to display, accommodate whatever sensory needs you can in the moment, stay calm and sympathetic, and stick to your guns with regards to whatever the demand of the moment is. Here is where the line between genuine need and tantrum demand can be difficult to find, but you know your kid.
Also, some of what you describe sounds like ‘after-school restraint collapse’, which is suuuper common (ask me how I know!). Your kid dealt with the demands of a day at camp or whatever, with other people and strange food and strange places, and maybe he held it together all day, and then it’s over and he’s just all out of spoons and he’s in a safe place and goddammit he’s got to yell about something.
posted by bq at 5:32 PM on July 13, 2022 [1 favorite]

I agree with a lot of what's been said above, about what's typical for all kids his age, and about allowing him to assert control in situations where he tells you he needs it, and it doesn't cost you much to give it (such as apologizing twice).

I'll also say this: your kid is going to get professional help, even if it's not as soon as you'd ideally want (and the healthcare system sucks for that). You are not going to break your child if you do what you need to do to get through the next few months. Your child is not going to get spoiled, or grow up to be a jerk, because for a few months when he was five, his parents gave in more than you might ultimately conclude is ideal, or you took shortcuts that reduced the overall stress on your family, or you coddled him. He's so little, and this is such a short time in his life, and there is going to be so much you can do for him when things are less stressful. When you have more help, when he's a little older, when your whole family isn't sick (!!! That's a huge detail, and a huge extra stressor during this period of time when it's been extra hard, especially if he didn't know how to communicate that he was sick and you weren't able to comfort him because you didn't know!!!)

Give yourself and him grace right now. Let him watch extra TV or have extra apologies or eat only one food or whatever he needs to do right now. It's not going to hurt him permanently to give in to him for a little while, right now, to get you and your family through this extra tough period before the cavalry arrives.
posted by decathecting at 7:01 PM on July 13, 2022 [2 favorites]

He was just sick and you are currently sick. I think so much of this will resolve itself. Give yourself and him grace. Sometimes it’s ok for everyone to just be grumpy at each other for awhile. It SUCKS and no one is excited about it. But it’s ok and won’t do lasting harm. Seriously, being sick as a kid and not having the words to say “I need to stay home because I’m not well” can and does lead to temper tantrums in the morning and later on! He’s exhausted from fighting a virus and so are you. No one is at their best, and that’s ok. It’ll pass.
posted by Bottlecap at 7:24 PM on July 13, 2022 [4 favorites]

If your autistic kid is melting down every day after school -- and has even started to freak out in the first 10 minutes of the day as well -- then there is something wrong with what's happening to him AT SCHOOL. He is on the verge of burnout and you need to address what has changed in the school environment in order to reduce his stress levels. The risk in forcing, or even just encouraging/expecting, him to "suck it up" (i.e., to mask his distress) is long-term severe damage to his mental health.
posted by heatherlogan at 6:32 AM on July 14, 2022 [1 favorite]

Not specific advice, but a resource: SupernovaMomma is an autistic adult with two pre-school-age autistic kids who produces "positive discipline" content. On her feed you can find lots of specific examples of her and her kids working through everyday issues.
posted by anotherthink at 8:30 AM on July 14, 2022 [1 favorite]

I'm going to chime in here because I haven't seen others really address this -- it's inherently problematic and very unlikely to think that your very young child is emotionally manipulating you when all they are trying to do is get their needs met. This is a case of cruel adultism that has been normalized and I wish for you to read about adultism and release that stigma, because that was a terrible narrative told to me by adults who blamed me for me being upset. Our theory of minds as adults are so weak that it is incredibly difficult to understand how a child actually thinks and feels, to the point where we ascribe completely different motives and punishments to them and we treat them as older than they are (which you have admitted in parts, but I still haven't seen it addressed fully, which makes sense, it takes time to unpack.)

The way this was targeted against me as a child is that multiple times in elementary school and middle school, I had extremely abusive authority figures accuse me of emotionally manipulating them because I was crying from their really intense reactions to me and telling me that I was doing something wrong, when I was already incredibly taxed from masking everyday. I didn't even realize until 6 months ago that I was autistic, because the research hasn't even factored in autistic women and nonbinary and trans folks and how it presents differently. Autistic folks, because their sensory processing is so incredibly difficult, keep being accused of being manipulative just because their reactions seem so extreme and not understandable to others, and you may have absorbed and picked up on some of that ableist narrative. I wish you all the best, this is all really hard!
posted by yueliang at 7:45 PM on July 16, 2022 [6 favorites]

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