I want to clear up a misconception that I know hurts people’s feelings (because you’ve told me),  and it’s for the wrong reasons – well, it is in our case anyway. As you know, I meet with families and work with professionals and educators and also do some public speaking now and again. And no matter the venue, one subject tends to come up again and again from parents, especially from the Moms:

Physical contact, more specifically… HUGS

Disclaimer:  Generally, when defining a word, I choose old faithful. You know, The Merriam-Webster Dictionary – online version, of course. However, I wanted something a little different, so I went for Wikipedia (don’t judge, it was a nicer definition)…

“A hug is a near universal form of physical intimacy (expression of feelings), in which two people put their arms around the neck, back, or waist of one another and hold each other closely.”

So, basically, to most of the world, a hug is a good thing. And it must be, because I see it all the time. It’s something we do to show one another that we love each other. That we’re happy to know one another, or that we missed each other and are glad to be together again. Well, you can’t get much better than that. What a wonderful feeling! Before I go on, think about this:

Rule #1:  All physical contact has to be on our terms

And while I love to hug certain people (basically my kids), let me explain how a hug can feel to me:

• Constricting – I can’t move my arms, my torso, my neck
• Sensorally Overwhelming – I can smell your scent – deodorant, cologne, hairspray, lotion, aftershave, shampoo, etc… I can smell what you just ate, too – chocolate, a sandwich, soup, seafood, chips, and anything with onions!
• Sensory Seeking – sometimes I feel compelled to grab hold of someone because I need to feel; also, these are times where I need to actually release pent up energy, so my hug is less affectionate and more a squeezing attempt at calming my nervous system
• Suffocating – You bear-huggers know who you are – you collapse my lungs!
• Intimidating – If you’re bigger than me and come at me for a hug, I feel ‘stalked’
• Trapped – How long do you plan to hug me? When will it end?! Do you plan to let go? Help!
• Awkward – I feel obligated to hug you, and many times I will, but I always feel weird when we let go, like I’m going to do it wrong – how are we suppose to let go? Is it like in football? Do we just break the huddle? What if I let go first and it offends you?
• Tactile Discomfort - It doesn’t feel right physically. I don’t like my skin touching someone else’s and I don’t like the way it feels: sometimes my shoulder blades seem disjointed – my bones actually pop when people hug me and I can feel/hear them move against each other
• Strange – I am actually more comfortable with a cursory hug from someone I just met or don’t know well, than with people (family included) that I have know for years. It’s like I can accept it as a cultural/societal thing, because it means nothing more than ‘hello.’ When you throw a close relationship into it, it says way more – So what does it look like I’m saying when I try to wriggle out of or abruptly break a hug? I’m guessing my body language is saying: “I don’t like you. Seriously, let go.”  The problem is – and this is where the NTs tend to get their feelings hurt – it’s not like that at all!

I really hate hearing Moms tell me they are sad and hurt when their children don’t return affection – that their kids withdraw from their touch. Hate it because I see these awesome Moms feeling bad about something they shouldn’t be feeling bad about. What I try to impress upon these wonderful women is what I described to you above:

It’s not YOU! We don’t cringe from YOUR touch, but touch in general!

Yet Another Disclaimer: I feel it imperative at this point to remind all of you that I do not, in any way, claim to speak for autistic people – no one person can do that, because we are all so beautifully different! I will provide information to you about me, Bella, and Bas and how we view things as autistic people.

The issue of touching – specifically hugging – is something we have dealt with in our home, so I will explain what worked for us, but first you have to realize:

Rule #2:  We must feel in control of our situation/environment.

With that rule in mind, here’s how it went down in our home…

Bella, like Bas and me, has never been a big hugger and you could always tell when she did hug she was extremely uncomfortable physically and emotionally. When I observed the interaction – say Grandma was giving her a squeeze – it was like she was hugging a mannequin. Bella was very stiff and there was no reciprocation of affection. Ever. By the time she was 7 or 8, she was pretty much done with the whole physical exchange. No big deal, our motto is: Do what feels right to you as an individual, not what other people tell you to do because it makes them comfortable.

And Then This Happened…

Bella stopped hugging J when she was about 8 years old. I mean she completely stopped, wouldn’t even get close to him because she thought he might hug or put an arm around her. She had stopped hugging everyone by this time: Grandparents, Aunts and Uncles, Cousins, Close Friends, etc… She would hug no one but me.

At first, J was irritated. He had no idea what she was up to – was she trying to make him mad? Had he done something to hurt her feelings, so she was trying to hurt his in return? Then I explained it to him (as I did you above):

J:      “What did I do? Is she mad?”

Me:  “It’s not you, it’s Bella.”

J:     “What? All the sudden she doesn’t want to hug me?!”

Me:  “No, she never wanted to hug you or anyone else.”

J:      “That makes no sense, you hug her all the time.”

Me:   “No, she hugs me.”

J:       “What’s the difference?!”

Then J Began To Notice Other Things:

J:     “Why does Bas only respond to you?” (Bas was about 5 at this time)

Me:  “He responds to you.”

J:      “I can say his name 10 times and he won’t even look at me. You say it once and he looks to you. Why?!”

Me:  “Because you say his name 10 times.”

J:     “That makes no sense!”

Of Course It Makes No Sense… (To J)

Talk about a rude awakening. You see, Jason was thinking neurotypically, which is the only way he could be expected to think. His feelings were hurt because his kids would not respond to him in the way he thought they should. I mean kids love J, ALL kids! I’m not kidding, when we go out they gravitate to him – any age, doesn’t matter. And why wouldn’t they? J is:

• Outgoing (loves to be with people)
• Extroverted
• Loud (J’s not yelling – he just talks loud)
• Emotive (smiling, laughing, joking, happy, angry, mad, sad)
• Boisterous (he moves around a lot when he talks – lots of gesturing)
• He’s Big (J is 6’1” and tends to loom over everyone – for a kid it’s intimidating)
• Affectionate (J is not one to hide his feelings for his family – he is full of love for them)

And that’s awesome, he’s a great Dad! There is absolutely nothing wrong with the above.

The problem is, we (the autistics in the house) are:

• Solitary (we prefer to be alone)
• Introverted
• Quiet (we don’t talk much, but when we do it’s at a regular or more quiet volume)
• Anxious/irritable around people who are boisterous and overly animated
• Non-emotive (we have the feelings, of course, we just don’t show them much)
• Calm (unless upset or provoked)
• Affection is not our strong suit – maybe when we’re sensory-seeking, but not in general

Again, awesome! There is absolutely nothing wrong with the above here, either!

So What The Heck Am I Suppose To Do (he asked me – very frustrated)?!!

• Don’t search them out for hugs – make a subconscious note that you should always hug them back
• Don’t talk so loud/so fast;
• Don’t  use exaggerated movements;
• Speak in a normal tone;
• Don’t come at us. You’re tall it’s overwhelming and intimidating. Put some distance between us (J did this and the kids began to relax around him)
• If Bas is not looking at you, say his name once and wait  – he can hear you, but you have to let him process it and then react (J began to do this and it worked. Bas began to respond after hearing his name only once from J)
• When Basi is sitting down, don’t stand over him and talk to him; kneel down and look up to him – give him that sense of control (he did this, and Bas began to respond… happily)
• Don’t hug the kids, let them come to you (and after a time they did on their own)
• Don’t take a hug, ask for one (and they began to give him hugs)

These things began to work because J stopped trying to treat the kids the way he would like to be treated. He began to act in a manner that was more comfortable to them. He began to communicate in a way that felt good to them. He observed my relationship with the kids and he mimicked it. He began to see that his idea of ‘normal’ is not our idea of ‘normal.’ It’s not that we didn’t love him, it’s that we didn’t love him his way.

And this is where I give you our third house rule:

Rule #3:  Give us our space

Space is a big deal to us. We’re totally cool hanging out with other people as long as the people around us respect the ‘personal bubble.’ Bella has actually asked people to step back before (she’s so funny). She will actually gesture with her hands how far people should stand from her… and they do it! And they don’t make fun of her!! Where hugging among friends is concerned, same goes. She has let all her friends know that she does not like to give or receive hugs, but she reassures each that she still likes them.

What’s This Really About?

It’s really about opening our minds and respecting differences. It can’t be about changing others to make ourselves more comfortable. Just because hugs give you a wonderful feeling of love and togetherness, doesn’t mean I get the same thing from it – even if it is a global gesture of goodwill and a societal norm. No matter how much desensitization occurs (I’m pretty much numb to the feel of ‘the squeeze,’ because I’ve been doing it for so long), it doesn’t mean I’ve learned to love hugging people, although kids are exempt from this because they’re little. I definitely don’t look forward to the exchange and avoid it whenever I can. So, after 41 years of hugging, I’m still  not a fan. Do you see where I’m going with this? I have been shaped by societal expectations to give and receive hugs because that is what other people like and are comfortable with. I do hug a lot less than I use to – almost never – and I have assured my kids that they don’t have to hug anyone they don’t want to, and they’re comfortable with that. We have seen that given the time and the space, Bella and Bas (and even me!) are more open to the idea of a hug and give them happily when they feel the urge, and always on their terms.