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| When the kids at the pool are mean...cheerfully clean up after them |
"Hi, my name's Eric, can I play with you guys?"
It's a simple enough question. What I have observed is that there are mainly three responses, at least in the area I live in:
- An awkward mumbled "sure" that is followed by a few minutes of trying to figure out what my son is talking about, and some attempted corporate play.
- Laughter and sustained ridicule from a distance.
- Occasional, but rare, real inclusion of the ASD child with a random group of kids. This is usually the result of either the adults or the children involved "knowing someone" with autism and making a choice to overlook "weirdness" and make room for the child. We need a LOT more of this out there.
We can do better.
What happens when a family with an ASD person is faced with dealing with rejection and/or social pushback every time they try to participate in normal civic activities with their autistic child/teen/adult? Often, they simply quit going out there at all.
Do you know a family with an autistic child? Did they vanish from the places you used to encounter them, either slowly over a few years or dramatically over a few months? Were you secretly glad you no longer had to "put up with" their child's behaviors and hear stories about what the family is "doing about" those behaviors? Did you let that family disappear by not calling them, or no longer inviting them to things? Did you quietly, in your own mind, decide that the parents were just "not doing parenting right"? Did you tacitly sit by while your kids played with the other neuro-typical children you approved of and avoided the clearly autistic child in social settings?
Now I'm talking specifically to you: YOU can do better.
As families impacted by autism, we are doing all we can. Trust me on this. It may not be the "all" that someone else has done, because families are complex webs of human beings who rely on each other and society and "resources" to survive. Stressing the web causes it to warp and change so available resources (emotional, financial, intellectual, physical, etc.) may have snapped at some point and the family may no longer be coping well, but I PROMISE you, they are doing all THEY can to work with their family member on the spectrum. It's not really about YOUR CONVENIENCE, you know.
Okay, I get it... "weird" is only cool when society chooses to believe it is cool, and in this ground war for acceptance, "weird" is the first red flag that gets attention, signaling that maybe something is wrong, and maybe we should just back away to avoid getting involved.
On the other hand, maybe you tried, earnestly, to not let that family drop off of the radar. Maybe you really do care a LOT and went seeking information, looked up things to read about on the internet, talked to people (everyone you could find who had some connection to someone with autism), and maybe you have figured out what the family REALLY needs to be doing. Thanks. Keep that shit to yourself please.
Don't like that response to how hard you tried? Suck it up, buttercup. It's not about you.
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Here's what you CAN do to include someone with ASD (first we will tackle "stranger encounter" tips):
- Require your child to include outsiders in corporate play. It won't hurt them.
- Require your child to be polite. Accept that the ASD person has different criteria for "polite" than you do.
- In the event that the "weird" kid is insulting or loud, or confusing, or gets his/her boundaries all wrong and declares your child "my best friend ever" after three minutes of play time...let it go. Try to assume your best "he/she means no harm" attitude. If whatever just happened won't matter in five years, it doesn't matter right now.
- If you need to engage the caregiver (who is probably already intervening before you even get a chance to go over there), please choose to believe the best of everyone involved. The worst thing for a stranger encounter is that dreaded sense of "I must defend/explain my child" to someone who has already decided the child intended harm.
- Check your prejudiced judgment of the caregivers' parenting/grandparenting/babysitting. Does the judgment help? Does it solve problems? Do you have the training and skills to make that call? Has your little darling never done anything you wish he/she hadn't in public where everyone makes these judgments?
- Assume nothing
- Ask direct questions about what you should expect. Listen to the answers. Believe them. The family KNOWS what the spectrum interaction means for their loved one.
- You really don't know THIS family because you know THIS OTHER family.
- When there is trouble on the child level...just because the ASD person is the most memorable, they might not be the most likely cause of the problem. So, we're back to ASSUME NOTHING.
- If the ASD person did in fact start something, it's probably not what you think.
- Assume nothing. It's important so I'll repeat it.
A personal anecdote:
What happened at the pool in the hour before I took the picture of my son with all those silly noodles?
Well, unfortunately, the response to "Hi, my name's Eric, can I play with you guys" was a full blown #2 and he was met with humiliating and ridiculing rejection. The mother sort of tried to require her child to play with mine (told him to go play with mine after I stared hers down as he was laughing at my son), but in the end, did not actually require anything of her son or his playmate. When they went to leave the pool area, her son dumped all of those noodles you see up there into the pool. She watched him and did not require him to fish them out. Since it was closing time, my son decided to do the staff a favor and go get them out. The staff appreciated it. But the heartbreak for me as his mom was that he was more aligned with the staff that with children his own age. How much would it have diminished their hour in the pool to include him?
So, how does it happen, how do you end up deciding not to go out in the world with your ASD child?
Our family's decline into social isolation happened like this: I would take my family out in public, we would try to control my son, he would get overwhelmed, he would get noticed (though he was hurting no one, the noticing usually came from his stimming, or scripting, or loud and odd commentary, or his crying/refusal to cooperate with me, or.... you name it, it happened), and I would get stares and the occasional ugly comment. In an effort to not draw my SON's attention to how different he was, and in a stupid effort to ease the discomfort of strangers wherever we went, I started to stop going out and doing things.
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The Take Away From This Blog Post:
Neuro-typical children NEED to play with ASD children.
They will grow up to live, love, and work beside them.
The world where the ASD's can hide and not bother you no longer exists.
If we don't get our children able to co-exist, we will create a giant class of adults who cannot work or play together. That is a much more serious problem than you might think at first.
Schools are increasingly separating out the ASD people because it is more convenient to group them in order to manage them. This leaves us with public spaces---churches, pools, parks, zoos, playgrounds, malls, restaurants, movies, concerts, events, etc., as the only means we have to keep our kids/teens/adult family members socialized and connected. The task is urgent. We must figure out, as a society, a way to include the "weird" and the "different" and the "challenging" because if we do not, we all lose.
A quick case study and a cautionary tale:
My autistic husband is a nuclear safety engineer, one of about four people in the country who can do what he does to keep all of us safe. In our locale especially, where there are five nuclear power plants in driving distance, we need him. His ability to do his job as well as he does hinges on both his ASD qualities and his internal sense of well-being. Isolation impinges on that sense of well-being. He still struggles out there with people's perception of him. He still avoids too much interaction as a result. We all need him to be good at his job. I need him to be kind and not overwhelmed. You need him to stay good at his job, because if something goes wrong with one of those plants, unless you and I are good friends already...you're probably not gonna know which way to drive to save your family. :P
I imagine a world where my son and my husband do NOT hide to avoid the awkwardness of others' perceptions of them. For my son, it looks like a whole lot of this:
"Yes! My name is 'so and so'
and we're playing 'this game'.
Join us!"
Your frustration for yourself and your precious son makes me want to cry/cuss/cry some more. Why can't we overlook the quirks of people? My ADHD son had few friends growing up and rarely spent the night away from home because he was so explosive. I have another friend whose youngest child is on the spectrum. Her in-laws refuse to keep him after school, but are willing to take the other 2. Guess what she's doing? Yep. ALL 3 will go to after-school care. HOW do you do that to your own grandchild???
ReplyDeletePrayers for you as you continue this path that you are blazing! Keep spreading the word. Being different is COOL.
Being different is and has always been cool!
DeleteBeing so "explosive" that inanimate objects get (regularly) broken or humans get physically assaulted? Not so much.
There are many, many parents of autistic children who blog about their exhaustion, the lack of services, the lack of success with medications to take the "edge" off their frustrated child. Even more chime in when some parent like Kelli Stapleton tries to kill their child for the "crime" of being autistic. It's clear that SOME autistic kids are so hard to manage that specialized support services are DESPERATELY needed. Maybe the grandparents simply aren't able to provide their grandson with the support he needs -- plus, caring for grandkids after school is a nice thing to do but by no means an OBLIGATION.
Bitsy...I have no idea why different is so hard. I've pondered this a lot, because it has bothered me a lot through the years. I think it is about fear and convenience. Twin horns of a dilemma. We can conquer fear through learning and listening, but it's kind of inconvenient, so for the odd twenty minutes here and there, it's MUCH easier to just stick to our personal echo chambers. The digital age isn't helping with that either. Kids are hunkering down, dumping anyone and everyone from their "lists" who disagrees with them, and so there is a pervasive societal move toward homogenization of "friend sets." More people like me around me means less that I have to overcome, less that I have to fear.
DeleteSadly, watching it play out against someone you love is super hard and heartbreaking. :(
Thank you for commenting. See 'ya round the school. :D
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DeleteThat's a mighty long list you've got there -- and your expectations are, frankly, so high you're likely to have 99.9% of humanity fail to live up to them. Realistic expectations are less likely to make you bitter.
ReplyDelete(My eldest's BFF is my Aspie nephew, my kindergartner's BFF is a non-verbal autistic girlie with an ipad "talker" and rather a lot of other family members would've been diagnosed as on the spectrum had they been born 40-60 yrs later. My parents are both physicists, a good third of their faculty colleagues are likely Club Spectrum members. More than half their current grad students actually *are*).
My starting point: Your son (like everybody on this planet, autistic, otherwise disabled and not disabled alike) is ENTITLED to be treated politely (cavity stops the world from descending into anarchy) and kindly. Period. Everything else is gravy, including having friends.
1. Kids at the pool, park, etc. are not, should not and, frankly, cannot be compelled to play with your ASD son. The expectation that they will every.single.time is NOT reasonable.
2. It's reasonable to expect other kids at the pool, park, etc. to be polite to son (and you should call them on it if they're mean/rude -- and tell their mom/dad too) --- and to sometimes accept his invitations to play.
Outgoing NT kids who randomly walk up to other kids at the pool, introduce themselves and invite the other kid to play (or invites herself to join the other kids' game) succeed maybe 40-50% of the time. Not because the Other Kids are mean (though they occasionally are) but because they're shy/prefer to play with the friend they came to the pool with/have to leave the pool in 5 min/don't speak English/etc.
My outgoing NT eldest gets a "no, thank you" from random other kids 40-50% of the time and the world continues to spin on its axis. (Heck, my kid occasionally declines play date invites and other kids have declined play date invites from my kids. Because they'd prefer not to spend 2 hrs in the other kid's exclusive presence. World.Still.Spins).
3. Relationships are reciprocal -- and its worth asking if you held up your end of the relationship. Have you failed to return (lots) of people's calls, failed to reciprocate dinner/social invitations, asked folks to alter plans to accommodate your son and then cancelled at the last minute (6x in a row)? For years at a time?
ReplyDelete(Also, in the first six months after your son's diagnosis, I'm guessing folks reached out and helped -- with casseroles, with carpooling, with doing your laundry because you were in crisis. After that, autism is just part of your life).
4. I'm 38. Nobody expects me to like other 37-39 year olds *because* they're about my age. It's reasonable to expect other kids who are your son's age to play with him because they're about the same age, why, exactly?
Your son needs to find a couple of good friends. Befriending every kid he encounters isn't, um, possible for most people (including NTs).
5. It's possible *some* kids don't like your son because they don't like your son (ie dislike is unrelated to autism). Not all kids "click" with all other kids. Autism isn't interchangeable with personality.
My nephew and littlest's BFF are both autistic and spend tons of time at my place (and vice-versa). Both are fun, lovely kids because they're fun and lovely (who just happen to be have autism). My eldest loathes a classmate on the spectrum, as he calls her vile names all day, everyday (& it's not bullying because it's considered a manifestation of his disability. Sigh).
6. The nuclear engineer: Oh good god. All of the above applies to him too. His colleagues are required to be polite and kind to him, period. The colleagues are NOT - emphatically NOT - responsible for providing this man with an "internal sense of well-being".
(And, honestly, if the engineer's current psychological state is such that he can't do his essential-to-public-safety job properly, he needs to take medical leave and treatment. Social skills can be taught, meds can help with the anxiety/depression that often co-occurs with ASDs, etc).
7. The good news is that a LOT of things really are very ASD-friendly. Academia and physician-scientist-ville and most of Big Oil (where I work) are exceedingly autism-friendly.
(An average of about 1-2 new hire exploration geologists per year get diagnosed with that used to be called Asperger's within four months of starting chez my employer. I know this because I'm the one who invariably ends up calling mom/dad to tell them their uber-smart 23 yo with a grad degree needs help with daily life, ie a parent to set up their finances, cook/cleaner a few times a week, etc).
Hello Katie,
DeleteI am not certain why you decided to go on a long diatribe about how wrong it is for parents of children with ASD to want to have their children included in public places, however I would like to clear up some very obvious misconceptions that you seem to have about the topic. Attacking strangers for their feelings about life is a rather infantile thing to do, so I will attempt to help you understand my mother’s point by presenting you with facts rather than repeated ad hominem attacks.
Firstly, I would like to point out that my mother in no way said that other children should be required to play with children with ASD. What she said is that parents should encourage their children to do so. Most children are not naturally going to want to play with someone different from themselves; thus it is up to parents to teach their children to be kind and inclusive to everyone. Learning how to play with different types of people is an important skill to learn at a young age because it will help these individuals be more inclusive as adults.
Secondly, I am not certain where you got your numbers for the success rate that NT children have at finding new people to play with, however I will accept it for the moment. The fact that NT children have a 40-50% success rate and Eric has closer to 5% is exactly the problem that my mother is discussing here. If people were equally inclusive of individuals with ASD (and all disabilities) then he would have about the same amount of success, however, he does not. Creating an environment where inclusion is the norm rather than the exception would do wonders to improve not only Eric’s chances at finding children to play with, but also those of children like your son.
An additional note on this point, I am very glad that your son gets enough invitations to play that he can turn them down. Eric gets none. This is just another example that the problem is real, it is not something that can be dismissed with “well normal children have problems too.” True as that is, they do not have the same level of difficulty as children with ASD.
As for your third point, I would like to point out that you did exactly what my mom said you should not do when interacting with a family with a disabled child. You made assumptions, rather personal ones at that. For your information my mother has never done any of the things you listed. She always keeps her plans, returns phone calls, and offers support and assistance to others. We were progressively abandoned because no one wanted to have to interact with Eric’s unique quirks and difficulties. As for your statement about the assumed “outpouring of support” for six months after Eric’s diagnosis. This did not happen. There were no casseroles, carpooling, or laundry. I do agree with you that Autism is part of our life, and my mother’s point is that it is part of everyone’s life. Society can no longer ignore Autism. It is part of everyone’s lives and excluding people with the disorder helps no one.
Fourthly, my mother never suggested that Eric should be able to make friends with every child he meets. She said that they should include him if he asks to play without ridiculing him and causing him harm. I agree that Eric needs some good friends, and the only way for him to make those friends is if people are willing to include him and get to know him. So far the only friends he can make are with other people with ASD because they are the only people open enough to look past his differences and care about him. I do not expect everyone to like him. I do expect other people to not dislike him because of his disability. I am sorry your child has problems with a boy in her class. There is a distinct difference between bullying and manifestations of his disability. Without meeting the child I cannot make such a judgement, I simply hope that you are able to find a resolution to the problem that does not result in the exclusion and demonisation of the child involved.
DeleteFinally, belitting the problems that my step-father has speaks to a lack of understanding for how exclusion affects individuals with ASD. To say both that he is entitled to them being polite to him and that he is not entitled to being included is paradoxical. Part of politeness is including others in your conversations, in your activities around the work place, even in your meals. The very suggestion that he should seek treatment for his social problems is a little insulting. One of the points of inclusion is that you accept people as they are. Forcing individuals with ASD to go through treatments that strip away everything that is unique about them is not the answer. Medicating them so that they are not a bother is not the answer. Teaching this generation of children to be inclusive of individuals with disabilities, and how to see past the disability to find the person is the answer. I hope this has helped you understand where my mother was coming from and what she was actually suggesting. I hate to think that your misunderstanding led you to believe things that were not true about us, or about this problem in general.
Thanks for your thoughtful response.
DeleteASD kids and friends: My girlies are NT - the cousin of my eldest and BFF of my littlest are on the spectrum. Both ASD kids are over at least once a week & vice-versa. Two girls in my Daisy troop are Club Spectrum members and total sweethearts too. My point is that having an ASD isn't necessarily an impediment to having or making friends.
It's unfortunate that your brother hasn't had much luck in making friends. The your-mom-removing-him-from-the-scene-and-not-venturing-out-much probably didn't help. It takes time for kids to become accustomed to a kid who is different and time to see the person behind the disability.
There's also the little matter that sometimes the person behind the disability is an unlikable jerk. You know, in the exact same way that a non-disabled person can be an unlikable jerk or someone you simply don't "click" with and prefer not to see in your off-school/-work hours.
(I get heartbreaking, semi-regular calls from the mom of my eldest's autistic classmate, inquiring why my girl is nice to him but declines his playdate invites... and am honest. My kid has been called vile names by her son 5 days a week for the past 4.5 years and has no desire to up that to 6 by seeing him at the weekend. And, no, I'm unwilling to promise that my girl will agree to a playdate if he refrains from insulting her for a week).
It's unfortunate that your brother hasn't yet made friends or had many playdate invites. Hopefully he'll find kids he clicks with soon.
Adults in the workplace: If your stepdad's colleagues are exchanging pleasantries with him, the bare minimum requirements of the social contract have been met. Since its unlikely his colleagues will spontaneously reach out to him, the onus is on *him* to (1) reach out to them, (2) derive self-esteem and a sense of well-being from someplace else or (3) accept the status quo.
That's a lot of information to take in Katie. Thank you for such a thorough response. My frustrations are very much about our local social environment. Those are not expectations listed above. Those are suggestions that people could choose and decide to do if they wanted.
ReplyDeleteThat was my point. These are choices. My observation is that many people do not know HOW to react.
As to my husband, the point was that he is happier when people are not rude. My guess is we all are. If rudeness is based on perception of the others' social skills, the fault lies with the person being RUDE, not with the person who is trying very hard to be part of the world. He has plenty of acquaintances and he does a fantastic job at what he does. He is in a bowling league, a choir, and enjoys his life. He stays away from certain places and activities because he hits this wall where he is not understood or accepted. He is not in need of any of that overkill of reactionary crapola you typed up there.
These are good people (my son and his father), with good intentions and good hearts. To see them shoved aside because their brand of communicating doesn't jibe with what is expected is annoying to me.
The caliber of social interaction has declined. Civility has declined. Autistic people are easy targets for aggression and harassment. Children can be guided to make better decisions by adults who choose to listen to those of us in the trenches. Adults can make better choices.
I never implied that this is the sole point of contact I have with the world. We have plenty of things we do out there, and have met a world of people who are kind, but I find myself choosing less and less often to do the things I did with my NT child. Especially parks, playgrounds, pools and such.
I think it's fair to expect people to try to include disabled people.
I'm pretty sure there are even laws about that because it's a problem in other areas of society.
I'm going to stand by the expectation for civility and kindness to the odd, weird, and disabled among us. I think it will make a great deal of difference in the very near future.
Comments are open again. I removed a comment that seemed like a personal attack on another commenter. Civil discourse will be allowed to continue. Attack language will not be tolerated. -the mgmt
ReplyDelete