I need advice from Adult #Autistics or those with #SensoryProcessingDisorder 

Okay folks, I’ve always been someone who’s keenly aware of how Adult Autistics can be an absolutely amazing resource for parents of kids with Autism, like myself. 

Today I’m reaching out to the Adult Autistic community, and or people with Sensory Processing Disorder. I have a question about my oldest with Autism. 

My goal is to gain a better understanding of what he’s experiencing, so I can better support him. 

Gavin usually goes with me when I fill up our five gallon water jugs. These jugs have built in handles, to make them easier to carry. Some of the jugs have no grip on the handle, while others have a slightly textured grip to keep it from slipping out of your hand. 

Gavin always complains about the water jugs with textured grips because he says they hurt his hand. He will only carry the jugs with smooth handles. 

My question is simple. Can anyone relate to what he’s saying? Gavin can at times, be a drama queen. It’s not easy to know what is what, when it comes to Gavin. 

I don’t want him to do something that’s as painful as he says this is, but at the same time, if he just doesn’t like it, that’s something we can try to work through. Does this make sense? 

The grip on these water jug handles are slightly rough, but it’s not anything significant. The idea is to simply help you hold on to the handle. If you’ve handled a gallon of milk, the texture is about the same. 

In your experience, as someone on the Autism Spectrum, or someone living with Sensory Processing Disorder does what Gavin complains of make sense? Can the grip on a handle of a water jug actually be painful? 

I would appreciate any insight that anyone has on this topic. ☺ 

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Jennifer Arnott

I do have tactile issues with some seemingly innocuous surfaces. What works for you, can be excruciating. So does that mean he gets an automatic out from carrying them? Not necessarily. Before we give in to these issues we should see if it can be adapted. What if you tape them? What if he wears gloves? Not carrying them should only be a last resort. We do this because if I avoided all of my triggers I’d never leave my bed, let alone my house.

The Autism Dad

That’s a great idea.. I hadn’t thought about taping them. That will still offer grip but be easier on his hands… ☺

Jennifer Arnott

I can’t wear crocs. Those little nubs that “massage” your feet feel like legos to me.

Holly-Marie Lambert

I definitely believe he can be experiencing pain from the handles. I feel pain when I small bug or loose hair tickles my body. It used to cause me great anxiety. I agree with Jennifer about the tape! That would make it smoother and hopefully easier for him to carry.

LiZ lawson

Autistic adult here. I say yes, it’s possible the sensory input is too much to handle to the point of being painful. This could change with time, which may reinforce the idea that he’s just been a drama king, but sensory needs also change. I cannot personally stand those jugs. I tolerate them to an extent. I don’t do the clear jug milk anymore because I do rice milk now, but imagine having to feel a rigid handle, with all the weight of water, tugging at you and burying itself into you — that’s what it feels like for me. If it’s empty, my analogy doesn’t quite work the way I intended, but the texture still exists.

It could also be that he’s not necessarily in pain-pain, but lack some other way to explain the uncomfortable feeling he is experiencing.

I say just trust him or, if he’s able to wear gloves (I have a hard time myself, most of the time; they feel weird!), perhaps that could be the compromise. Sometimes there isn’t a compromise, though.

Just trust him.

Avia Batya

Absolutely. If I carried those, my hand would probably not only hurt, but have red marks on them.

The Autism Dad

That’s sorta what I’ve been thinking. What’s strange for someone like me, who doesn’t experience the world the same way, is how he reacts to pain. He can beat his head into a wall until he bleeds (he’s done this many times in the past) and it doesn’t bother him, but a hang nail is the end of the world.

Does this make sense as well? He seems to perceive pain very differently..

LiZ lawson

Hang nails are totally the end of the world. Don’t they just make you wanna gag?

Avia Batya

I think it depends on which sensations bother him and which don’t. A hangnail does not hurt in the same way banging one’s head can. I used to throw my body into walls sideways (without hitting my head) and enjoy the release. It may also be that, if he’s amped up enough, the adrenaline is limited the pain he feels when he head bangs….or it forces him to do it regardless of whether he likes the feeling.

The Autism Dad

Thanks Avia Batya

Avia Batya

Anytime

Carol Bird

The Autism Dad yes we do perceive pain VERY differently. I was a head banger until 17. I would be glad to answer any questions you have.

Heather Gosnell

Carol Bird my son smacks his head with his hand when he feels like he’s ‘stupid’, what is best way to react and help him?

Carol Bird

Heather Gosnell it starts with understanding that because they can’t express how smart they actually are – they feel so absolutely dumbfounded… they KNOW what they are thinking but their body will not cooperate – it pisses them off to say the least… and they feel so hopeless. The root of this is that they feel no one knows how damn smart they are! They are like “Mom!!! Mom!!! Why the hell cant you hear me! I am TRYING TO TELL YOU….” so they are exhausted and so frustrated that no one can just read their minds… so here is step one. Every single day… every single day you sit down with that child when there are no competing sensory inputs and say the child’s name followed by this “I see you. I KNOW you understand me. I know you are one of the smartest kids probably on this planet. I KNOW you have SO much to say to me that your body will not let you say. I want you know we WILL get this figured out. We WILL find ways to make it easier for you to tell everyone just how smart you are. You hang in there. I got you. I got you and this is going to get better… you have my undivided attention. I am listening. I know you are tired – so tired of having to wrestle to be heard over the smallest things. I know you are hurting and so angry. But I am on your side. We are a team. We will get this figured out. You are amazing and I know it. I love you so much. Hang in there with me ok.., we can do this.”

Carol Bird

Heather Gosnell that is where you start. He must know you see him, understand his frustration and that you know he’s trying to communicate. Empathy is number one.

Sara Oliver

As both an Adult Autistic and someone with significant Sensory challenges… it possible… what is not a problem for one person is a huge challenge for someone else. If they bother him, believe him and only have him carry the smooth handles

The Autism Dad

Thank you very much… ☺

Joseph Galbraith

Sara is like my sister from another mister, I’m an adult autistic with agenesis of the corpus callosum, I concur with what she says 😀 it’s very individual, if he says it hurts him, I’m sure it does <3

RebornHumanSpirit

I’m already autistic so i don’t need help

Jennifer Arnott

I do have tactile issues with some seemingly innocuous surfaces. What works for you, can be excruciating. So does that mean he gets an automatic out from carrying them? Not necessarily. Before we give in to these issues we should see if it can be adapted. What if you tape them? What if he wears gloves? Not carrying them should only be a last resort. We do this because if I avoided all of my triggers I’d never leave my bed, let alone my house.

The Autism Dad

That’s a great idea.. I hadn’t thought about taping them. That will still offer grip but be easier on his hands… ☺

Jennifer Arnott

I can’t wear crocs. Those little nubs that “massage” your feet feel like legos to me.

desireepalma

Autistic adult here. I say yes, it’s possible the sensory input is too much to handle to the point of being painful. This could change with time, which may reinforce the idea that he’s just been a drama king, but sensory needs also change. I cannot personally stand those jugs. I tolerate them to an extent. I don’t do the clear jug milk anymore because I do rice milk now, but imagine having to feel a rigid handle, with all the weight of water, tugging at you and burying itself into you — that’s what it feels like for me. If it’s empty, my analogy doesn’t quite work the way I intended, but the texture still exists.

It could also be that he’s not necessarily in pain-pain, but lack some other way to explain the uncomfortable feeling he is experiencing.

I say just trust him or, if he’s able to wear gloves (I have a hard time myself, most of the time; they feel weird!), perhaps that could be the compromise. Sometimes there isn’t a compromise, though.

Just trust him.

Holly-Marie Lambert

I definitely believe he can be experiencing pain from the handles. I feel pain when I small bug or loose hair tickles my body. It used to cause me great anxiety. I agree with Jennifer about the tape! That would make it smoother and hopefully easier for him to carry.

RebornHumanSpirit

I’m already autistic so i don’t need help

Sara Oliver

As both an Adult Autistic and someone with significant Sensory challenges… it possible… what is not a problem for one person is a huge challenge for someone else. If they bother him, believe him and only have him carry the smooth handles

The Autism Dad

Thank you very much… ☺

Joseph Galbraith

Sara is like my sister from another mister, I’m an adult autistic with agenesis of the corpus callosum, I concur with what she says 😀 it’s very individual, if he says it hurts him, I’m sure it does <3

Avia Batya

Absolutely. If I carried those, my hand would probably not only hurt, but have red marks on them.

The Autism Dad

That’s sorta what I’ve been thinking. What’s strange for someone like me, who doesn’t experience the world the same way, is how he reacts to pain. He can beat his head into a wall until he bleeds (he’s done this many times in the past) and it doesn’t bother him, but a hang nail is the end of the world.

Does this make sense as well? He seems to perceive pain very differently..

desireepalma

Hang nails are totally the end of the world. Don’t they just make you wanna gag?

Avia Batya

I think it depends on which sensations bother him and which don’t. A hangnail does not hurt in the same way banging one’s head can. I used to throw my body into walls sideways (without hitting my head) and enjoy the release. It may also be that, if he’s amped up enough, the adrenaline is limited the pain he feels when he head bangs….or it forces him to do it regardless of whether he likes the feeling.

The Autism Dad

Thanks Avia Batya

Avia Batya

Anytime

Carol Bird

The Autism Dad yes we do perceive pain VERY differently. I was a head banger until 17. I would be glad to answer any questions you have.

Heather Gosnell

Carol Bird my son smacks his head with his hand when he feels like he’s ‘stupid’, what is best way to react and help him?

Carol Bird

Heather Gosnell it starts with understanding that because they can’t express how smart they actually are – they feel so absolutely dumbfounded… they KNOW what they are thinking but their body will not cooperate – it pisses them off to say the least… and they feel so hopeless. The root of this is that they feel no one knows how damn smart they are! They are like “Mom!!! Mom!!! Why the hell cant you hear me! I am TRYING TO TELL YOU….” so they are exhausted and so frustrated that no one can just read their minds… so here is step one. Every single day… every single day you sit down with that child when there are no competing sensory inputs and say the child’s name followed by this “I see you. I KNOW you understand me. I know you are one of the smartest kids probably on this planet. I KNOW you have SO much to say to me that your body will not let you say. I want you know we WILL get this figured out. We WILL find ways to make it easier for you to tell everyone just how smart you are. You hang in there. I got you. I got you and this is going to get better… you have my undivided attention. I am listening. I know you are tired – so tired of having to wrestle to be heard over the smallest things. I know you are hurting and so angry. But I am on your side. We are a team. We will get this figured out. You are amazing and I know it. I love you so much. Hang in there with me ok.., we can do this.”

Carol Bird

Heather Gosnell that is where you start. He must know you see him, understand his frustration and that you know he’s trying to communicate. Empathy is number one.

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