I hope those with partners or spouses in this forum can offer some suggestions. I'm the long time NT spouse of an ASD hubby, mother to a teen daughter on the spectrum as well as a teen daughter with profound, complex developmental & medical needs. I was a special needs teacher specializing in dual diagnosis teens & adults for well over 20 years, supporting the family as hubby has always been under-self-employed, until ill health took me out & isolated me at home. Daughter is higher functioning than hubby. On another thread, I posted something like this, below & I wonder if there are those on the spectrum here &/or their NT partners who could offer suggestions?
"I'm an NT spouse & mother - the only NT in the house & this explanation of preferring no behaviour change or to "fit in" is often given to me by my ASD spouse & young adult daughter. It's become a very old & destructive perspective in the household, requiring me to live entirely in an ASD world with zero accommodation or attempts at perspective change to benefit my needs as an NT person. I understand the unique gifts my spouse & daughter have accrued & developed in light of their autism, but not the 100% refusal to adapt anything for another's (& ultimately their own) benefit. I must constantly adapt & change to accommodate their needs & those of others. If you were asked to change & adapt for the benefit of another, would you attempt to do so? What would convince you to attempt such changes; what words from an NT would convince you to change your perspective &/or behaviours in select situations? In our home, the ASD diagnosis is not used by those diagnosed as a tool to help themselves, rather as a weapon & I'd like to find ways to encourage voluntary change. Suggestions?" Any help out there? Thanks.
I'm sorry TenaciousT if this is a tad long. I had a strong reaction to what you said and what came tumbling out, is, I guess, simply my response to your post. I can only tell you it from my perspective, but I could relate to a lot of what you said, from the perspective of autism. I was diagnosed at the end of October last year, at the age of 50.
I identify very much with how you describe your husband. When I first read your post, my immediate response, was 'never'. You will never get an autistic to change their behaviour. I kind of went into one (in my mind) about how, if we (although I’m speaking only for me, and others who might identify with this) change our behaviour, for the sole benefit of others, it signals the beginning of a slow death for us. But it doesn't mean we can't take responsibility for ourselves and change our behaviour that way. But how we do that differs greatly from person to person, depending on numerous factors. But there are some similarities, hence such terms as autism and neurotypical.
About 20 or so years ago, I needed help bringing up my son. In order to get the help I needed, I had to change my behaviour, to some degree. Which I did, for the sake of my baby. But little did I know at the time, it was the beginning of a slow death for me.
It has taken me the last 12 years, to get to where I am now. As soon as my son turned 18, I left the home. It was the hardest and most heartbreaking thing I have ever done, but it was the only way I could survive and stay alive.
I could go into loads of detail, but basically, I needed to get away from everybody I knew and shut out as much of the world as possible, in order for me to recover from the years of intentionally ‘fitting in’ which I did, in order to get the help I needed.
It's hard to explain, but I'll try to explain a bit of what it's like for me. Basically, if I don't want to go out to work, for example, and the consequences are, that I loose everything I own and I would be homeless. I would rather become a homeless person, who eats food off the streets than go to work. I would rather be like a sewer rat eating my food like an animal and associating with nobody. If I allow myself to feel what it feels like when I'm expected to behave in a certain way, or when I do, it's like something is ripping my whole body and soul apart. It's too much to bare so I have to block out how I feel. But there's only so much you can block out.
This is why autism appears to be so complex. We might be able to block something out on one day but not another. I didn't realise how severe the so called traits, actually were. Like your husband and others on here, I didn't see myself through your eyes.
I honestly could not understand why you got upset at some of the things you get upset over. I remember telling someone to go and put their head down the toilet and flush the chain, once, because I thought that what they were saying was so ludicrous.
I know what you mean about your husband having this knee jerk reaction that people with autism are correct & superior in their outlook, whilst NTs are "off". Because this is it. This is was autism is. We think differently because we live in a different world. When nt's speak to nd's, it's two different languages. Even if we say the same words, it's still two different languages. So there's at best, some level of understanding between both or one of the parties (intellectually) and at worse, we just don't understand each other and it irrupts into violence, fear, blame, judgements etc. The closest language I've found that would do more justice to creating an autistic language, is ancient Sanskrit or poets such as Khahil Gibran. His poem on love is intoxicating.
What I've learned, is that I do think in a different way to everybody (nt's) else and my way is pure and unconditionally loving. I honestly used to wonder why you bothered to stay alive. Seriously. I used to ask people why but gave up asking as I never got any real answers. People just thought I was crazy. I thought they were crazy. And this might sound crazy, but after starting vipassana meditation, a few years ago, I had an experience that changed my life. I was not only able to witness but experience the connection that you people have amongst each other.
It was so beautiful and tender and I honestly didn't know it existed. Beneath all the 'noise', there was genuine love and affection, but on a different level to autistics, or to me anyway. This was prior to the official diagnosis.
It's like I lived behind a glass shield all my life, but for what felt like a brief moment (it wasn't, in terms of your time, [which I don't understand], this happened over a period of a few years), but for what felt like a brief wonderful moment, I was allowed into your world. It was so beautiful, I can hardly explain it and my 'visit' into your world was brief. But long enough for me to get a better perspective on life.
I realised, that although when framed in your terms, your language, and your understanding, our way of thinking could indeed be considered superior. However, that is a direct contradiction of what we really think. The explanation only goes so far.
To put it simply. We speak different languages so there are misunderstandings. Both sides are trying to explain themselves, while still using the same words, just maybe in different orders or something, but the same words all the same. It's like going round in circles. If your speaking Japanese and I'm speaking French, and we don't understand each other while desperately trying to express ourselves, it doesn't matter how many times we say what we want to say or how many different ways we say it, we're still speaking a different language and sometimes, both sides run out of ways to say things and stop trying.
Autistic people are fooled by this idea of superiority just as much as anybody else is fooled in society. Both kinds of minds are necessary for the advancement of societies. Both are living in man made prisons of self limiting thought patterns and beliefs. No one is more superior than the other, because in truth, we are all one.
However, it's painful for me to live in your world. Although I no longer see it as separate from me and I'm not saying the two worlds can't meet. That's ludicrous. We are all in this world. It's like, there is no such thing as theft, therefore talking about prisons and punishments is a complete waste of time. Let us work on realising there is no such thing as theft. But if I say that to nt's, they think I'm crazy. I think your crazy that you can't see this.
The best description that I've heard so far, which fits with my experience of autism, is that the human race has evolved to such a degree that their brains have developed in such a way that they are now more connected, in terms of identity, to their physical bodies. They have developed their brains in such a way that they have created great advancements in science and technology etc, but it's like they've become a product of their advancements. Autistic people are found to be missing this particular part of the brain (I can't remember all the names), and so they are less identified with their physical bodies and more so with our so called spiritual aspect. Which means we speak two different languages.
But we are all individual expressions of the one whole. The best way I can describe it is through the words of aboriginals from Australia. They said, their spirituality is a oneness and an interconnectedness with all that lives and breathes, even with all that does not live or breathe. It is a feeling of oneness, of belonging, a connectedness with deep innermost feelings and that everything else is secondary ~ Mudrooroo, Aboriginal writer.
They also said, 'We don't own the land, the land owns us. The land is my mother, my mother is the land. Land is the starting point to where it all began. It's like picking up a piece of dirt and saying this is where I started and this is where I'll go. The land is our food, our culture, our spirit and identity.—S. Knight
Not all autistic people are self aware, like not all neurotypical people are and there are varying degrees in between, but the reason we can spend so much time alone and not feel lonely is because we know, consciously or not, that we're connected to everything.
I feel like a 12 year old girl, or younger sometimes, in this big scary world that I neither understand nor want to participate in. When I'm talking to someone, it's almost impossible to say this to them, because I'm in the body of a 50 year old woman, who has raised a child, got a degree, did well in my profession etc, yet still, I really am like a small child. Sure, I learned to fit in. But the more I fit in, the less successful I am at being me. Then nobody wins. In my world, there is no time, as such, but I am 'growing up' slowly, but still, I retain the heart of a young girl, in awe of all that surrounds me. Yet I find that others don't see things the way I do. I can't understand why. It hurts my brain. There's so many variables, there's so much going on. What is it all for? I don't understand it.
I still haven't opened most of my Christmas cards. I have 20 or more cards to open, but I can't open them yet. It's too much. I started to open my presents, the day after Boxing Day and was thankful I was left alone to do this.
When I was younger, Christmas was a nightmare. My older brother and younger sister would urge me to open my presents. I didn't want to. I wanted to open them when I felt ready. But my parents would join in and eventually, I'd give in and open them. And I hated them. I remember one time I got a watch. I was furious. Why would somebody buy me a watch. I didn't understand time let alone know how to tell it or work out how to use it. I was furious at everything I got. The only thing I wanted was elocution lessons. I wanted to learn how to speak properly, like they did in the old black and white movies. I still love those movies. I didn't understand what the people around me were saying, not on their level. But I understood what was happening on what is thought of as a higher level, a spiritual level. But I couldn't connect what I understood with what you people meant and I saw no point in your understandings. Until I had that experience, which culminated in an event in Australia last year, I didn't understand you. I was scared of you, I still am to some degree. But I understand now that we're simply speaking two different languages, but that doesn't mean we can't communicate. But for me, right now, I need time to discover me, away from the framework of neurotypicals, to allow me to find my voice and learn to express it in a way that does not restrict me. That might mean I use a medium other than verbal speech. But at the core of who I am right now, I need time away from the world, which is largely neurotypical, to work out how I fit in with the world. Not as someone masking at being a neurotypical, but as me. I know I've got something to offer the world, but it can't be contained in the neurotypical framework.
Every time I hear my letter box rattle, it's like a full on assault to my senses. Every encounter I have with the outside world, feels like I'm back to square one. I am learning to see myself, in light of the physical world, and it's very difficult.
I could refuse to do it, and restrict my life to little more than barely existing, while living in the fantasy that I'm some how superior to nt's. But that's nonsense. That's like burying my head in the sand. However, it's only when I'm aware of that, that I will do anything about it. Before awareness, I was living in my world, thinking I was right. I was wrong. But not because I didn't care or have empathy or love, but because I saw the world only through my eyes, and couldn't see myself through your eyes.
If they had let me, as a child, open my Christmas presents in my own time, by myself, I would have been grateful for the gifts. It turned out that I loved the watch. I used to take it to pieces and put it back together when I was in class at school. I don't know how I got away with it but I did. The boys at my table, my 'friends' were all jealous of me, because I got to take my watch to pieces and not do the school work. I would have been grateful for the presents, even if I didn't like them, because even giving them away was a pleasure. But because they put pressure on me, I couldn't cope and had a meltdown, but they all just thought I was being horrible and naughty and I couldn't tell them anything about why I acted that way.
What I'm trying to say is autism is very complex, in that it's difficult to explain. It's difficult because we're speaking two different languages.
When I was younger I hated eating, and especially certain foods. I hated meat or fish but I was just about forced to eat. So I would have problems with digestion, I used to hide food as if I had eaten it, and the doctor just said that I needed to chew my food. The point was, I couldn't chew it because I couldn't bare eating it but I didn't know why and couldn't explain why, so at the most, I used to swallow it in chunks. I still have a fear of food and water and drink mainly only hot water and at the minute, can't manage food and drink every day, but I'm working on it.
One of the problems with the descriptions of high and low functioning, as others have mentioned, is that they are misleading in several ways. Some people think that a person who is autistic and non verbal, is low functioning and a person who is autistic, verbal, holding down a full time job etc, is high functioning. But I would argue that the opposite is true. If a person is 'low functioning' but getting their needs met, like my friend's son, I would say that is high functioning. He has the gift of being non verbal, so he doesn't have to use his verbal communication skills with nt's to get his needs met. Because trust me, that can be exhausting, as you know. It's the same on both sides. We're both speaking to the other person in a language that person doesn't understand and it's so frustrating and difficult to get the other person to understand.
All of us, no matter who we are, are all striving to meet our needs and the world needs all kinds of minds if we are going to evolve as a race. Autistic people, as much as nt's, have to make an effort to live in this world, amongst each other.
That doesn't mean infringing on anybody else's rights, it means accepting everybody as equals, no matter who they are or what they've done. This however, will take the efforts of both kinds of minds. Nt's and nd's.
I respect and understand your world. And like you, we can not be understood from our actions alone. As much as I would love to be part of your world, meaning your world view, I can't be because it's not my world. That doesn't mean we can't live side by side, or even together in the same house, but it does mean that I have to first of all build an outer world which meets my needs in which I can then, if I choose, expand my world outwards. I'm trying to not go too deep into this.
Part of my autistic profile, is pathological demand avoidance, which means that even the most wanted requests can seem painful and too much to me and I will go to any lengths to refuse to do things. Even if I actually want to do them. There is no logic to this. Why, if I'm dying of thirst, with a crippling migraine, do I not have a drink of water? It's extreme, and it's not only down to avoidance. It can be down to whatever I'm interested in at that moment, or to whatever I might be doing at that moment. And any interruption from the outside world, any contact, good or bad, in person or in a letter or whatever, can feel like such a big thing that it completely messes up my world and it's like I have to start again, from scratch. Processing it, recovering from it, getting my head round it, not allowing myself to drown in it. Sometimes I find myself in places and I have no idea why I'm there. It's terrifying. It happens if I get too involved in nt world.
I'm not sure what I'm trying to say TenaciousT, other than, I'm where you're at, I'm trying to figure this out. Your husband may or may not relate to my experiences, but I could relate to what you were saying and wanted to share my experience from my perspective.
My friend is nt, and her husband and both kids are autistic. I'm not saying her life is 'easy' but she's got a great routine going and her life is certainly interesting and full of love, laughter, tenderness, etc, as well as the frustrations that come with living in a house full of autistics. But she's developed a plan, that works for them, and she often helps me. I employ methods she teaches her 8 year old daughter, to help her be herself in the world and minimise the anxiety. She's developed a great routine. I'm setting up a routine where by I eat every day, get some exercise and fresh air etc. It's a slow process. But I'm learning, that we can all be ourselves, but it takes a lot of understanding on both sides, for us to live together harmoniously. The physical body is as important as the spiritual aspect of being, we need an awareness of both. Otherwise, what's the point of having a body.
Anyway, I've rambled enough. If there's anything you don't understand about what I've said, and you would like to understand it, please ask me to elaborate.
You're a remarkable person. I wish I could give you some help with this, it's very hard to answer, as others have said and as you have said, because of course we're all different, but I do find it helps to hear the experiences of others, so I could at least give you that. Your husband and children are incredibly lucky to have you and help is scarce, as we try to navigate our way through relatively new territory, but together, we have a better chance. Talking is good and you're as welcome and needed here as much as autistics, so thank you for your post. It helps me to understand me better.
BlueRay That was incredibly beautiful & emotive. Wow! I'm impressed by your thoughts & ability to describe them with such grace. Thank you.
i understand what you're describing. I too would prefer we had no labels to separate each other, instead having the luxury of meeting each person & their aspects, learning & responding to each individually. It's not just a failure between NTs & those on the spectrum unfortunately, but something that divides us by every difference, when instead, we'd do better to slow down & savour them instead. We're smaller individually, as communities & as a species when we reject what so critically connects us, demonizing instead of embracing difference. Your description of the sudden revelation into NT perspective is very moving. I sincerely wish I could have the same for the members of my family.
Your description of Christmas, now & as a child is helpful too. You described some things that I have suspected were being experienced by my hubby & have actually tried to put words to for him, but he's been unable to confirm. Most interesting is your mention of pathological demand avoidance. I'd never heard of it before but what you describe is incredibly familiar - to me. Oddly, I have recently been experiencing exactly this in the wake of some rather horrific trauma & being entirely unable to control it, have been looking elsewhere for others to do what I simply cannot - no matter how easy & self-preserving the tasks actually are. It never occurred to me that the choices I've thought hubby was refusing to make, may instead be just like what I'm experiencing that you name as pathological demand avoidance. I've been experiencing this relatively short term. If hubby deals w/this completely unmanageable effect all the time - my heavens - no wonder he looks so anguished. Particularly as he can't describe or explain at all. He'd have no way to succeed if this is what grips him rather than stubbornness. Blue Ray- you've offered me perhaps the most explosive & useful insight I've ever had about my ASD hubby & daughter. Thank you! It's not a solution but it is the kind of explanation i thought nobody could ever give & for me, a place to start. What a gift you have. Thank you! :-)
I'm not sure I agree exactly that we have different languages - NT & AS - but I can see we're lacking bridges. You seem to be one. Thank you.
From my heart I want to say thank you blue ray for saying what I now know is how I feel.
It all feels so right, I understand everything you stated,
Dear TenaciousT I read your reply to me,I cried for a for a very long time after. I hadn’t realised how much your husband struggles. I wanted to tell you how I feel when I see suffering, how much it tears at me if I feel I have caused suffering, I couldn’t find the words, I am similar to BlueRay and your husband in that I cannot just accept something that to me is so wrong or pointless in my mind,How much I will hurt myself rather than cause hurt to another. I don’t accept offers of love or care, I reject it as it would hurt me to accept it, I had a flashback days ago of being young,it hurt me so terribly,I cried, my wife tried to hug me, I told her to just go away and leave me, I later told her I was sorry, I don’t think it mattered I had already hurt her, so more pain for me to hold onto,
I just want you to know the pain you thought you could see in him is real,real for him,as it is for me, I shut out news and anything I feel is hurtful to others, it never stops,but fills my head, it destroys me, I am unable to bear a grudge, I cannot hate others, I feel so much pain. Life is hard, there is no magic button to switch it off, I have looked, I am able like blueray to talk of my mind, it is never easy, outside of here I tried but met hostility each time even anger,my life has been one long attempt to give,to care to feel,each attempt has been misunderstood and I have been punished to often,. I gave in, it doesn’t stop me knowing that everything I do in my life is wrong for me and quite often others as I try.yes everything,I do it to fit and yes it is destroying me slowly. I am unable to have the strength to stop the pain.
I am struggling to keep going, but I refuse to give up in the knowledge it would destroy lives around me, so pain but in different levels, my pain or pain for all I care for.
Having this place and the kind loving people has allowed me to see we are all sensitive and childlike in being vulnerable.yes we are all different but we all know suffering, pain, being used,a sense of never being quite right in our thoughts.
I am allowed here to give help and know even if I am wrong I will not feel pain for at least trying,I can show my love without it being weird,I can be me, it has taken fifty five years to finally know me.
I now get flashbacks of being young, horrible memories of me trying so hard to fit in,be kind, but always it was wrong, twelve memories now, each one hurts, there may be many more, I will deal with each as it comes.
Thank you for being an amazingly eyes wide open being.
if only the world was full of people like you and us, it would have no hunger,no hate, just basic human love for each other.
Take care and a special hug for you and all of your family () () () () Xxxx.,
Nope. You are not going to give up @Lonewarrior. You are not & you are not unable or without strength. You will do exactly the things Blue Ray talks about, having learned over time & with great effort, about her own needs & from her friend with family on the spectrum. You will not give up any more than I will give up my friend & in my own NT way, thru tragedy & appalling events, I have felt exactly as you have. Exactly. I suspect there are few here who have not met ourselves in the dark & wanted to flee. But you won't because you are valuable & necessary. For two days you have given me counsel in a time which may not have shown as I wrote, I was perilously close to throwing it all in & I didn't because you shared & encouraged. That is valuable & you must not diminish it as opening up "only on here". You won't give up because despite what you feel about yourself, your people want & need you however they can get you. You won't give up Lonewarrior because my mother who lived with serious mental illness w/ near constant psychosis, contemplated ending it every day of her life but did not for the sake of her 7 children. Her children do not give up no matter the odds, nor do her grandchildren, nor will the great grandchildren coming up. Nor did my father who cherished his wife in the midst of incomprehensible behaviour. Your relationship w/Your wife will be honoured by your mutual struggles; your children the stronger for witnessing perseverance above pain & the generations that come from you will be finer, better people than we are because of your example.
You will do for yourself what Blue Ray is learning & what I do for my girls. You will advise yourself to pick one single thing you want to tackle for your own benefit & follow through. You will build yourself "a fortress of solitude" within your NT household & use it for your own & ultimately your wife's benefit. You will feel out your own boundaries & live within them & thereby set your unique individuality free. Yes you will Lonewarrior because I can be a right bully with good people who think somehow they are not. I recognize the beauty & strength in the vulnerability you feel. Feel grief, not because it is part of you or because you haven't been a cookie cutter of others or because you stumble - feel grief for the tons of human beings in this world unwilling to be vulnerable because it enables them to be deliberately hard towards others instead. Keep going, post here & with your magnificent brain & the shared perspective of others here, you will find peace & learn to honour yourself. Hugs as well as a light cuff to the ear. Stand up friend - you have much to take pride in.
Thank you,,,,,,,so much,,,() x
All new to me - maybe not to you or others here but hubby & I (yes, together, can you believe it?) have been perusing the PDA Society website - where we've found much of what has caused him to reject his AS dx. There's a page describing its effects as a proposed sub-diagnosis, which includes what you describe so vividly as debilitating emotion - compassion. I don't know how to post a link - but I hope if you take a look, you might feel some of the renewed optimism both hubby & I are experiencing today.
No, you can’t give up Lonewarrior, but not because of anyone else but for you. You are an incredibly important part of this world. Truly. The Buddhist monks etc pray and pray and pray and maybe people don’t realise what they’re doing. They’re sending out beautiful pure kind loving vibes, to all corners of the world. Radio’s and satalites etc are amazing, they carry so much information through the airwaves, but that information only goes in certain directions and to certain points. But your energy, your love and your loving kindness goes all over the globe, in all directions and all of those who are open to it, will receive it. And even those who aren’t open to it, will receive it, they just won’t realise it. I’d love to work with you at some point. I work from a metaphysical perspective and we could work on line. Love is its own reward. You just need to become aware of that. I know it’s not easy. I’m like you. I still haven’t opened my Christmas cards or sent a thank you for a special gift I received, because it’s all too overwhelming for me.
Thank you for being you.