Respecting HIS boundaries (question for autistic adults)

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I decided very early on that I was not going to battle against my sons sensitivities to satisfy my own needs. I don't force physical contact, eye contact or hours upon hours of therapy trying to make him seem like a nt child. My theory has always been, if someone tried to force me to engage in behavior that made me physically uncomfortable would I comply? Nope. So why do that to my son. We obviously have to compromise on certain issues like wearing pants in public but for the most part I have learned to adapt and alter my form of communication and affection to fit his needs. This goes as far as when he's home and has no desire to go outside and play, or he has no desire to play with his siblings I let him isolate. Many people say I'm dooming him by doing this which I think is a bit dramatic. He goes to school, has 3 siblings and has OT and ST daily. My question is really for autistic adults on this forum. In your experience do you feel forced eye contact, physical contact and forced play actually helped you in anyway? I'm tired of hearing from family and friends on what's best for my child and what I NEED to be doing to give him a normal life. I don't presume to think I have the slightest idea of what it feels like to experience the world like son, so I would like some perspective from people who have lived through it and have first hand knowledge of growing up with autism. Thank you.

I don't know if I am going to be who you want to hear from, as I am not officially diagnosed, due to age and probably was too functional at school for anyone to have bothered.

This is the Parent Board section here, so there are a lot of us undiagnosed folks and NTs too.

Anyway, I didn't have excessive amounts of interference being undiagnosed. Occasionally, my mom would try to engineer a friendship if it was convenient for her parental/social needs to do so. I resented it and it always crashed and burned. Maybe I got a couple of life lessons from it, but not worth it.

To your larger point, kids on the spectrum have different needs and there is a line somewhere between needed help and too much and too many demands. There are things I have to teach b/c I have to. There are things I teach b/c I think the skills are necessary enough to warrant the disruption. There are things I wait on until I see readiness/interest. Then there are things that are just not important.

I think you are in a better position to know b/c you know your child best. If the arguments made by others are not convincing to you, once you give what is said considered thought, then I would trust that.

Edited for typos

Last edited by ASDMommyASDKid on 26 Jul 2014, 7:00 am, edited 1 time in total.

I think that you are doing the right thing, OP.
I don't believe in forcing autistic children to act a neurotypical way like making eye contact or pretend play or socialize.
Instead, I believe in teaching autistic children what are social things and what do they mean, and they can decide for themselves if and when to make eye contact or socialize or any other behavior that is very unnatural for them.

When I was growing up, my parents didn't force me to do these unnatural things, but they made me learn self-help skills and basic communication skills, so I would have these when I became adult.
As part of my research, I do eye-tracking studies during live interaction between two people, and the results came back that I look at the eyes ~4% of the time during a ~5 minute conversation with a labmate, and each fixation onto the eyes is much shorter in duration than a neurotypical fixation onto the eyes and much like a passing glance at a featureless wall.
But inspite of my lack of eye contact, I am able to have a productive life doing brain/autism research.
I don't feel that making eye contact helps me in any way, and the other unnatural things that autistic children are supposed to do to appear more normal don't help me in any way either.

Are you talking about not doing many hours of ABA?

Physical contact was important to me, I learned with the OTs help how to do it that was positive for my child. Stuff like pushing her in a hammock swing made her feel good, she liked it, and it made her world and mine better.

Speech therapy and OT daily that you're describing your child gets isn't nothing. And IMO, those therapies shouldn't be just about forcing, if they are at all. They should be about making the world more tolerable and more understandable.

Yes I opted not to do ABA. He gets ST and OT at school and has recieved those services since he was a toddler. As for physical contact I allow that to be on his terms. When he feels the desire to lay on my lap or hug me it's because he wants to but most days there's a series of "passing each other kisses" (I kiss my hand close my hand and give it to him) he enjoys that. My focus has been on basic life skills. Self care, understanding social expectations (how to behave in public places, manners etc) Where people tend to criticize me is allowing him to isolate in social settings, telling family members to respect his space and not hug him unless he initiates, not to say things to him like "look at me." The people around me seem to think those are things that can be changed if I just made him do it eventually he would "get use to it"

I'm not the intended responder (I'm just a parent of kids on the spectrum), but I think it's important for the kids to be forced into learning certain skills. Eye contact is not on my list- I'm thinking more basic self help skills, communication skills, safety, etc. I guess it depends how high functioning your child is. I'm a huge believer in early intervention, because one of my kids received it and the other one didn't (both diagnosed with severe autism, but at different times). The one who got early intervention, is now higher functioning than the one who didn't. He says some words, he does some academics, he will initiate interaction if he needs something (most of the time), etc. The one who didn't get it, none of that. He says no words, he doesn't use PECS, he doesn't use sign language, he doesn't write, he doesn't do academics, and he never initiates interaction, even if he needs something. Long story short, I wish he'd gotten the services within the short "early" window (he didn't due to the waiting list). It's hard to watch intensive therapy sometimes, but I think of the long-term. I want them to be able to tell me if they're hurt or sick...and I don't see them learning how to by stimming.

That said, I've never understood the fixation with eye contact. When the kid is that low-functioning, really who gives a damn if he looks at your eyes!? He can't even communicate! Even with high functioning kids, I don't think it's even that big of an issue. There are a few issues that I put "out of bounds" for ABA. I think it's very important to set boundaries with ABA. Your boundaries will be different than mine are.

Also thank you all for your replies. The feedback is very helpful.

I don't feel that forced socialization ever accomplished anything other than stressing me out.

However,

this also applies to me.

Thanks for saying this - I have always wondered it myself. While my son would be classified at the "high-functioning" end of the spectrum, it's more because he is careful to cover up his struggles and not that he doesn't have them. Several of my friends have kids who remind me of him, but who are classified as "quirky" (you know, the kids who don't need help, do OK socially and physically, but have aspects of being on the spectrum.) I recently found out that all of these kids had gone to a preschool that was proactive in getting diagnoses and they all had had early intervention.

I'd say this: as someone who was never diagnosed and who darn sure did everything my own way...some things need to be taught. At a certain point, I learned to negotiate, because I had to, and I learned the hard way: by being bullied and ostracized. I know this doesn't really apply in a kid who is obviously disabled (most people aren't monsters and give kids they know have special needs a break) but I think it still applies. One of the things autism can bring (with a TOM deficit) is the incorrect perspective that things should always go your way, or be done your way, and - not a deliberate ignoring of other people's wants and needs, just a blindness to them.

That said, what you're describing in interacting with your son seem to me to be good work-arounds for this: he doesn't want kisses, fine, but you find another way to interact with him that's comfortable for both of you. I think THAT is more important than whatever the actual thing is: you're teaching him that Mom is a separate being with separate thoughts, feelings, and expectations. Having him interact socially (which, if you're teaching him to "behave in public places," you're teaching him to do) extends this circle outside of boy and Mom.

In short, (and keeping in mind I wasn't diagnosed, either - but I just found all my school transcripts, and whew!) to me, it seems you are doing what works for YOUR kid. IMO, the big picture is more important than any single skill, and picking your battles (e.g. self-care, manners) is critical. You might tell the people who are nagging you "thanks, but we are working on ________________ right now, and he learns best if we do one thing at a time."

In terms of eye contact, I'd say this: my son is a social aspie who is not bothered by eye contact; he just forgets to do it. A good half of his poor pragmatic skills are because he misses all the nonverbal information because he is looking the other way. We do push him for eye contact for this reason, but if I thought it was distressing for him, I'd stop. If your child won't or can't make eye contact, you do have to find a work-around for the deficit this creates (which, if blind people can find one, so can people on the spectrum - so it doesn't mean forcing eye contact, it means finding another way to collect nonverbal information.)

Thank you for saying this. That is a great way of thinking about it.

I like momsparky's distinction between a child forgetting to do something v something making them uncomfortable. Both of my children are very social and made eye contact before their diagnoses, but they'd get engrossed in something and forget to look up. So, we did include eye contact in their therapy because they were ready and it wasn't a sensory issue for them. It's helped my pre-verbal (not semantics, he's trying to talk, but very behind) guy immensely, as his non-verbal communication skills have skyrocketed. He can now make his needs known to even an average person on the street, and he really does enjoy the interaction.

That being said, I echo the sentiments of many others who have already posted. Trust your gut. There is a big difference between unlocking a door (translating the world for your child) and forcing a square peg into a round hole.

It goes both ways. Kids HAVE to be forced to learn some things-- basic respect for others, self-care, how to not endanger themselves or others, to wear clothing and not spit on the floor in the grocery, not to snack on the fruit in the produce department. These things are "how to get along in the world," and they are not optional.

But I'm not a fan of forced eye contact, forced physical contact, and forced playdates. In my opinion, they're not for the kid and have little to nothing to do with the kid's well-being. They're for the teachers, and the relatives, and all the other people who don't want to step out of THEIR comfort zone (and, of course, THEIR comfort zone is completely valid, but "that strange child's" comfort zone is not).

If physical contact is forced on an NT, we call it assault, or sexual harassment, or rape. Tell the relatives THAT.

Turnabout's fair play, they do have a legitimate need for SOME form of gesture of affection. Perhaps something can be worked out??

I can't do eye contact; no amount of therapy is going to make it possible for me. It feels like standing naked in front of someone who is wearing only underwear; as if I am simultaneously invading their privacy and having mine invaded. I can't think while I'm making eye contact, and I tell people that. "You can have my eye contact, or you can have my attention. You can't have both. Please pick your preference."

Turnabout's fair play, I have learned to look at the person speaking. Forehead, nose, mouth, slightly above and to the left or right of their head. It works well enough, unless the person in question is seeking to find fault. In which case, well, they are going to find something wrong no matter what.

He has to learn to socialize EVENTUALLY. But he doesn't have to play with other kids by force now (and if you want my opinion, I think forcing it now will only make him likely to take longer to develop any desire to do it on his own, or even make it more likely that he never will). There are all kinds of other ways (and maybe better ways).

--Practice polite exchanges with strangers. Things like saying "Thank you" and "Have a nice day" to the cashier at the store, or saying "Excuse me" to another shopper, or et cetera. It's a far cry from play-- and maybe that's not a bad thing. It's simple, and scripted, and short. Also something that is much needed, as good manners seem to be dying in the developed world.

--Watching other kids play. He doesn't have to do it for long. A few minutes will suffice. You can watch other kids together, and talk to him about what they might be doing and why and how.

-- Talking to adults. Sometimes it's easier. It was easier for me (and, now that I'm a grown-up myself, a lot of the time I would rather talk with the very old or the very young than people my own age).

There is all kinds of stuff that can be done without jamming a kid into 40 hours a week of ABA, basically for the comfort and satisfaction of others, and especially over such minor things that can be worked around.

Will that get the relatives off your back?? Sadly, probably not.

You won't be able to control the world forever. My mom would complain at me about what she wanted my children to do and I am so literal I could not push myself that hard as it's laughable to me---we can motivate a child to for instance make eye contact, we cannot force it. I could ask my NT child to hug her and it would happen, if I asked my AS child, she'd refuse until she got to be old enough she would just do it, awkwardly, because she trusted me.

I am glad I was told to make eye contact as a child as it does give a lot of information. And I do wish I'd had more help learning to interact and even to play. I do think it's important to keep services in perspective, though. Autism isn't a temporary thing you fight through, like if you have a lot of PT after an injury. So whatever the interventions, they have to be and teach respect for self and individuality and others personhood, and that really can IMO only be done by the interventions being based in those things. Which means encouraging a child to play and engage and not pretending it can be forced, not making the intervention about force. IMO the interventions should be about organizing the world and making engaging tolerable and enticing.

Nice people do better if you give them something positive to do. I had no luck with this as my mom wasn't interested, but since isolating isn't just about wanting to isolate it's also about being overwhelmed, if these people are really concerned perhaps they'd respond to suggestions from you how to turn down the overstimulation. And otherwise, I'm not sure how different this is from any other situation where people provide unsolicited advice. You can thank them pleasantly and explain you're following the speech and occupational therapists recommendations and prioritizing other things right now. If they need to disagree, let them.

This is another good point because one of the things we should be teaching our kids, regardless of neurology, is the concept of respecting the personal space and boundaries of others; as well as the ability to assert theirs. How do you even teach that if you are constantly goading a child to accept encroachments on his personal space?

It is problematic especially with kids on the spectrum because you want them to trust their instincts, but their instincts are wonky. The trick is to get them to improve their judgement, not to have them never trust it. I think constantly telling a child he has no right to his personal space is a dangerous lesson.

My mom always accepted who I am but she also changed things about me to make my life easier and so I could live a normal life. She changed my thinking, I had to learn to be more aware of my emotions, communication, manners, turn taking in conversations, staying on topic, making me order my own food and buy my own things I wanted. I also wanted to be liked and have friends so she would correct how I acted. As I got older,my mom decided to quit trying to change some of my behaviors and decided to let me figure it out on my own and it's my own problem, not hers. So a 11 year old wants to push a doll around in a stroller around the neighborhood, let her. Let her make a laughing stock to the neighbor's kids and get teased about it and she can deal with it herself. It's her problem.

I think sometimes you have to let your kids make their own decisions about their behavior they want to change or not change. You can tell them what the consequences may be and now they have a choice now that they have been warned. They can still do it or not. That is what my mom did with me. I can remember my mom telling me things like don't talk about this or kids will think you're weird, don't smell the paper or kids will think you're weird. Don't tell anyone in school you watch the Teletubbies. She tried to protect me for years from the teasing and bullying and gave up.

I do not think physical contact should be forced, even if its just a hug from a family member...if your child isn't comfortably hugging then he shouldn't have to. I don't think you're doing anything wrong with your approach.