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Home is our safe place. Home is where we “reset”. Creating this environment for adults can be challenging but it can be done. Below is a list that aims at helping people with their sense of "home" in their lives.

What's it like to live with a person with high functioning autism?

10/18/2017 10:30:49 AM

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Fonda Smith

7 Answers
Daniel Jones
Daniel Jones, I have ASD & over 15 years experience working with those with ASD & their carers

I think Karlie Black has already answered this well. My wife (we have been together over 16 years) wrote a chapter about her experiences of what it is like to live with and be in a relationship with someone with ASD in my book Look Into My Eyes because in talks that I give on autism this was one of the most asked questions.

She would say pretty similar to Karlie. Something I read in one of the other answers relating to an autistic child I still do now which is liking quiet, dark small spaces, so when I am struggling with sensory overload, or had a day of being somewhere very busy etc I just need to find somewhere to calm down. My wife has often made me dens with blankets and cushions etc for me to go into for a while to calm down and calm my senses. This may seem odd to other couples, having a 30-something wife making a den for her 39-year-old husband.

I see the world very black and white and unless I am in a frame of mind where I’m looking out for it I take things literally, so if my wife is getting annoyed with me for some reason and she tells me to leave (so that we don’t annoy each other further) I leave home with no intention of ever returning. Writing this here I know that isn’t what she means, but in the moment when she says it I always seem to assume that is what she means and it never crosses my mind to be reflective on what has been said and what it might mean, she ends up telephoning me and finding out where I am and explaining that wasn’t what she meant. I know she finds this upsetting and difficult.

As others have mentioned I will be blunt and honest so can sometimes upset my wife without meaning to do so. I also spend a lot of time wanting to talk about what I am interested in and not what others (including my wife) are interested in, and have upset my wife on occasion by changing subjects to what I want to talk about rather than what she was talking about, and when told she hasn’t finished yet I have sometimes accidentally said I was bored with what she was saying - this hasn’t gone down well, but at the same time she understands I didn’t mean to cause offence, and I do try my best to learn and to control what I say and do and I look to her for guidance about how I should respond and react in different situations so that I can learn and improve and not upset my wife. Being with my wife has had a profound change on me. I’ve learned so much and gained so many skills. I still make mistakes, I’m still frustrating at times to be around, and it takes a lot of thinking and control to process how I should behave and to try to do real-time reflection on my behaviours etc, so I focus on making sure I do this when with my wife, but struggle to keep up all the effort all the time - like when around other people, especially if I’m not thinking that I need to control myself in this way - like if I’m just out and about listening to music and then suddenly have to interact with people so I haven’t prepared for it, or if I’m working and suddenly someone - a work colleague for example, decides to talk to me or ask me questions.

When out with my wife - like at her work Christmas parties etc, I try really hard to control myself and be who I think I should be because I don’t want to embarrass her or make things awkward for her.

Many of these areas have improved over time largely by continued communication and me asking what the appropriate behaviour is for a situation and then me rehearsing for hours and hours behaving in that way.

Karlie Black
Karlie Black, Explorer of Life

My partner has Asperger’s syndrome and it is frustrating at times but generally manageable. A few things that frustrate me sometimes:

  • The impaired theory of mind (predicting what the other person may be thinking and feeling) can lead to insensitive and hurtful comments. Most of the time I’m not affected by them but when I’m going through an emotionally difficult period, like the death of my mother, they can hurt like hell.
  • Conversations in which he talks so much that I can barely get a word in. That comes from his insensitivity to body language and other cues combined with his fascination with many topics. It sometimes feels like he has a conversation with himself and I am just his audience. As a person with ADHD, the flood of words can be exhausting for me, especially after a long day.
  • His trouble understanding and responding to my expressions of frustration or distress. Instead of responding to the emotion, he will try to provide a million of seemingly logical arguments why I should not feel the way I am feeling. And when I persist in trying to explain how I see the situation, he will sometimes react inappropriately and smile, for example.

In general, though, we’ve found ways to minimise the effect of things that annoy us about each other. I think that managing expectations is very important in this kind of relationship. Also, understanding that my partner’s reactions come from his different way of seeing the world and are not intended to be hurtful helps me not to dwell on them. Even though it takes time, I am usually able to explain why I am feeling a certain way and he’s trying his best to understand that. Even though he might not connect to the emotion itself, he is able to cognitively empathise with me most of the time. We both try to focus on the positive things more than the negatives and always give each other a benefit of the doubt.

To end on a positive note:

  • Because I am an introvert, I enjoy the space we give each other. I like being close to him but also need some time alone and so does he so in that we are compatible.
  • Even though he tends to dominate discussions, he is a highly intelligent person and his perspective on things is always interesting to listen to. Also, I know how to stop him to say what I want to say, if I really want to. And he doesn’t take offence to that.
  • His inability to empathise with my feeling might be frustrating but his corresponding ability to stay unbiased by emotions can be helpful, especially when I get overwhelmed and stop seeing the situation clearly.

In conclusion, this relationship has taught us both a lot about who we are and what makes us tick. There is still a lot to be learned, for sure, but we are both up to the challenge!

Eric D. Ellis
Eric D. Ellis, ADHD father of one autistic boy, 13, and one ADHD boy, 15

I can only answer about my experience with one high-functioning autistic person: my son. But autistic people are unique as snowflakes: just because you've met one, you shouldn't assume that you know what autistic people are like.

In my case, I have learned to do lots of things to help my son feel comfortable in his home; knowing how soothing certain textures can be, I bought a very soft, furry area rug for his bedroom, and added a giant furry beanbag chair.

Knowing his love of small, enclosed spaces, I converted the upper area of his bedroom closet into a reading nook with a ladder leading up to it and a pile of pillows and blankets inside. It has a curtain for a sense of privacy, but also it lets him hear me when I need him to, and lets me hear him if needed (However, the older he gets, the less he needs me. Most of the time he is happy to be left alone and listen to music, play video games and watch youtube videos.) He spends a lot of time in his little man-cave!

I also have to be aware of his emotional state and adjust accordingly. Again, the older he gets, the less this is an issue. We used to cut family outings short, or leave events suddenly on a regular basis when a meltdown was imminent, but now that my son is 13, that rarely happens anymore.

I have learned to stock the pantry with the foods he likes. With a normal person, you can stock it with a wide variety of things, but for my son there is only Chef Boyardee, chicken nuggets (with ladles of ketchup), Mac and cheese, pizza, Ramen noodles, cheese sticks, and chicken-patty sandwiches. Oh, and Little Debbie Zebra Cakes. That's it. He pretty much won't venture outside this realm, so I make sure to keep the kitchen stocked to make sure my son won't starve.

That's about it. Other than that, it's like living with a cranky and temperamental (but ultimately interesting, charming and lovable) roommate who makes multiple demands of you, several times a day, many of which seem insane.

Anonymous
Anonymous

I don’t think that there is a universal answer to this question. I can only tell you what I have noticed in our own home. And our journey has just begun, seeing as my freshly diagnosed son is just 4 years old. High functioning can also be in the eye of the beholder—he needs a lot of extra support, but I still perceive him as high functioning.

They say no two autistic individuals are the same, and I will also say that no two autism parent is the same. Factor in those two variables, and you have a very large range of possibilities. As well as country of origin, social status, economic status, siblings, spouses… Anyway, you get it—this is just a slice of life. Take it with a grain of salt. But please, don’t shit on it either. It hasn’t been easy, and it’s not easy to write about either.

Passages through time

0–1: learned things very quickly. He was ahead of other babies for sitting up, crawling, turning over, walking, etc. He would actually stop sleeping to learn a new skill for usually about a week. He’d get hell bent on learning it, and just obsess till he got it right.

He cried a lot, and took poorly to nursing. He could not co-sleep, did not like being worn in a sling, and could not be rocked to be soothed. I struggled a lot to know how to handle him, as most popular mothering advice simply did not fit with him. A lot of things that actually worked were totally counter intuitive.

1–2: Yet no babbling, and no eye contact. And a lot of sensitivities—most especially noise and other people. When he was upset, his fits could chill a room in a few seconds flat. The intensity was penetrating, even to bystanders. This was a period of a whole lot of public shaming and very poor unsolicited advice. This is when isolation began for the whole family.

I had tried to get medical advice but was told to grin and bear it—parenting is tough, you know. It might be my fault, as I didn’t really didn’t know how to ask for help, or how to label what was happening. All I had was a vague idea that my child felt angry and/or freaked out all the time, and heavy guilt that I was the worst mother alive. I was however given psych drugs for myself and told I had PPD.

I had started to work again, and struggled with daytime care. He got kicked out of his first daycare. I then blew through nannies. I eventually found a place that went well, thank goodness. That place had trained staff, some for special ed. Although he had not been labelled with anything yet, they just knew how to handle him better.

He was also doing some very remarkable things. He started to hum, well. Got obsessed with music. He also started to take to numbers and the alphabet. Without being able to name either type of symbols, he could line them up in proper order, just a little past 1 years old. I kept feeling that there was something very special about him, but kept struggling to understand why he was flipping out all the time.

2–3: The Dark Ages… I screwed up. Hard. And this is why I am anonymous, right now, because I am still eating myself up alive for that year. I also don’t think this guilt will ever subside. I’m a piece of shit, and I don’t deserve this amazing child. Nor do I deserve my amazing husband.

So anyway, back to the story. Back then, autism was still off my radar. And his meltdowns were chronic. I now call them meltdowns, but back then, I just had a constantly screaming child I just could not calm. I was freaked out, lost, and not coping very well.

My husband was taking a hell of a hit too, but did better in terms of direct handling. He is very calm by nature. He could stomach the non-stop meltdowns way more than I could. And like the coward that I am, I just started working a lot. Over-time, special projects, outside contracts, you name it. I basically disappeared for a year.

I also started drinking a lot. I’d be at work, after hours, alone, and drinking heavily. Making mad money, but hiding, and destroying my health, fast. I’d sleep a few hours a night, and start it all over again the next day. I mostly stopped eating. I mostly stopped talking. I even stopped thinking about anything too personal for a while. I just worked and drank, hard. And I was so anxious, that I started running every morning, starved, hungover, and overworked. Still running. Grunting relentlessly, and trying to chase away the fact that my child was struggling, and that so were we.

3-4: The Big Questioning. Not by magic, or by epiphany, mind you. By insistance of others around us. Both of our sets of parents, and the very good daycare, and the child development consultant that was working with him, finally al gave us the “you need to check for autism” speech.

Don’t get me wrong—it was nothing immediate. Both myself and super hubs were in denial. I still remember us having late nights, after our boy was in bed, discussing how these people were crazy with their autism stuff. How they were lead by Doctor Google, or by desire of extra help budgets, and misunderstanding our brilliant, but different boy.

But the thought lingered… 3, and not talking. 3, and no eye contact. 3, and never pointed. 3, and runs away from other children. 3, doesn’t want hugs ever. 3, and no pretend play. 3, and run by the sensory, be it avoidance or draw. 3, and prefers to be alone. 3, and a birthday party is his worst nightmare.

We finally went for the assessment, convincing ourselves it was to shut up other people….

And? Of course he is autistic. It seems crazy that we ever doubted it.

4: Understanding... And I’m 100% back home. Scared, confused, but with a specific goal to obtain. I’m done hiding.

It’s not that I am done hiding because I’m any less of a piece of shit coward. I still am. I just now have some direction. I have people to help me know what to do when the microwave noise sends him into hysteria. Or how to help when he doesn’t want to be held and is breaking down, and how to persist in being there when he wants to chase me out of the room because he’s scared and reacting to things I never would have guessed are scary.

As for my boy, at 4, he is still very delayed in many ways. And still rejects people, and still is overwhelmed by emotion and noise. He requires a team to go to school, and might always need this. But so what? I’d still never trade him. I need adjustment to him much more than he needs adjustment to me. And that’s my bad. But I needed the team. I could not have done this alone this well.

He is starting to talk. And once in a while, he accepts a guest in our home. He has a handful of words… that we bless every time.

He still feels so special and somehow brilliant. And the love of music has deepened. He can’t say “I love you”, but he can sing skinnamarinkydinkydink when it is time to say “I love you”.

Some attempts at conclusion thoughts

This is really bullshit. I have no great conclusion to draw, really. What do I know?

But I felt compelled to share, and I should do it properly. So I’ll address what I think needs to be addressed when trying to discuss autism parenting with the public. And brace myself.

It’s fucking isolating, in a way I could have never dreamed of.

Not in the way most autism sites describe, where it’s only isolating from “neurotypical” folks. Or parents of “neurotypical” folks. It is isolating from everyone, to me. Asking average folk for an opinion is most often disappointing. But asking the autism parent crowd often feels devastating.

Autism advocates and politicians have very set ideas on how you should treat, and feel about, autism. And people that don’t know just don’t know. I find that talking about it with anyone is wrought with peril. Reading is fine—you get impressions, experiences, etc, and put it in the bank you have to keep growing. But expressing yourself is a dangerous as no matter whom you talk to will find a way to shoot you down in a way that will actually hurt you.

I’m not perfect in how I feel or how I do. Maybe that is why I feel very alone. But I don’t want to navigate the social world of autism with a sword and a shield in my hand. So I only talk to professionals, mostly, shyly poking around in autism topics, wishing I could get a kind and knowing hand, but too afraid to stick my neck out.

I’m yet to find a social communication that will help either of us. Professionals help my son. This helps me. The rest is just too much to handle.

Mark Jackson
Mark Jackson, studied at University of Wolverhampton

I am high functioning (ASD 1) and before I was diagnosed, my relationship with my wife could get very very rocky. I just asked my wife how she would answer this question (seriously as I knew she’d quip a joke otherwise heh) and she said the following:

When communicating, try not to be too ambiguous. It can be hard work especially if routines are broken. Said that our relationship is quirky and seldom dull.

As someone who has Autism, reading social situations can be very difficult and tiring (the amount of concentration I put in so as to not say or do something wrong is draining). As such I’m quite happy to get on with my own thing, which suits my wife as she has quite a stressful job in which she needs to bring work home… so whilst we do do things together, we don’t live in each others pocket as it were.

Not sure if any of this is helpful as I realize you were probably looking for somebody to answer from a neuro-typical view point… but the question did pique my interest :)

Edit: Karlie Black added some very good points to what it must be like from a neuro-typical point of view.

I wanted to add something that infuriates my wife and I for different reasons:

If a problem occurs, my go to is to find a solution to said problem and fix it. This can be infuriating if it is a social interaction problem as my head on approach is not always appropriate. If we have an argument, my wife will often need a set duration of time to calm down and be on her own before communicating with me… while everything is very fresh and going around in my head the whole time and I feel that it needs to be talked out there and then.

With time and being together for 19 years, I have begrudgingly learnt to compromise and back off… but that was incredibly hard early on in our relationship and I was like a dog with a bone.

Also… I don’t get the need to ‘vent’. Say that my wife has had a hard day at work, while in town… or with her family (just hypothetical examples)… she will talk to me about it and as far as she’s concerned, she’s got it off her chest and can move on. This is really annoying for me as it’s not that I don’t care that she’s upset (I really do)… but I feel the very strong need to sort that problem out, to talk to the people who have upset her so as to fix the issue and make it so she is not upset. Obviously she won’t let me do this (with the exception of extreme examples)… so I end up mulling and carrying the issue in begrudged silence -.-

Teresa Crum
Teresa Crum, worked at UCSD Medical Center

Every person on the spectrum is different, so it’s hard to answer that question. I think I could write a book about it, if I was a good writer. :)

To raise one involves a lot of IEP meetings, worry about the future, and just getting them through school. My daughter is 23, still lives with me, is a joy in some ways, but still very immature for her chronological age. I’ve set up a special needs trust for her, with inherited money (thank goodness for this).

It’s really hard to say, because every individual is different, and she is a girl, obviously, so sometimes things can present differently than a boy would, on the spectrum.

Fonda Smith
Fonda Smith, I am an Aspie with three Aspie sons.

A rollercoaster with rules, limits and the unknown just up ahead.

For example: I just grounded one of my twins. He had decided that he would rather play video games than make his lunch. Video games are a highly preferred activity. I got the call from the school that he was not bringing a sandwich, and would they like me to open a lunch account so that he could get something to eat?

Ya- this happens once or twice a year, each twin takes a turn. This twin is the more volatile, and we’ve been having meltdowns twice a day because of it. He (like most children) accuses me of not wanting him to be happy, and I tell him I love him, and in order for him to be happy, he needs to eat, be able to think and grow.

You see, while we have autism, we’re people too. It is an everyday situation that has to be handled with a bit of understanding. I could get angry when he melts down, or I can comfort him and be firm. I need a certain result, so I pull certain strings. At 11, kiddo is smart enough to know what I am doing and why, but he’s still a kid and emotionally immature. Boundary setting is key.

 

 

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