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.
Hello TenaceouseT thank you for directing me here after I read your extremely kind words and suggestions to a mother struggling to cope with two young boys,one who has autism.Thank you for helping her.
Being only recently aware (six months)of such a thing as autism I am self diagnosed myself, first I thought ASD then after talking to many in here the penny suddenly dropped and I realised I was Aspergers, I didn’t like that! I had only seen a small amount about Aspergers man,
I got angry ,I was very down,,, I researched it all, I kept seeing horrible things said about this man. It took people in here to show me that not all Aspergers men are all the same, not two people on here are exactly the same, we are all a mixture of many variables, our upbringing can effect us all. Our schooling, our long term relationships etc.
One thing that was apparent to me was that I had huge feelings of empathy.
something aspie man is reported to not have much awareness of.
Finding out his traits made me stop and think about my own relationship,
my wife is NT like you. I realised how much she has to do to accomadate my ways, I felt so angry with myself. I could suddenly see all the times she coped with our two daughters acting as a go between when I was having a tissie or not getting my own way.
I honestly never realised I was like that! I swear I never actually stopped to think just how hard I could be to just keep happy.
I had specific needs or wants, simple things like having my own cutlery, my own oval plate,getting stroppy if my stuff/clutter had been tidied and sorted. My impatience if having to walk endlessly around shops. Moaning about just about everything.
Damned hard work when everything was cobbled together. Our girls weren’t on the spectrum but my oldest was diagnosed with dyslexia when joining college, my wife did most of the hard work helping her achieve more than expected of her abilities, I did help as I have certain dyslexic traits, but my wife has worked so hard.
so i now have an understanding of my ways, I could see my bad points, As such I stop and think more now, I take into consideration what effect it will have on her, I learnt by seeing my bad points.
I take it both your daughter and husband are both formerly Diagnosed with ASD?
Do either of them understand how difficult it is For You? It seems not, your husband needs a wake up call, he isn’t deliberately being uncaring,,,but he must somehow be made aware of your needs. He and your daughter need to understand just how much you do for them,,often without any thanks or praise.
Would they entertain reading up on how people such as you are effected?
we do enjoy researching things! Maybe ask them what they think about researching the subject of NT living with ND?
If you can find a way of shifting their focus towards research which will lead to evidence regarding the social interaction between ND and ND or NT and NT. then follow up with adding ND to NT it would be relevant.
Basically lead them to a place they can discover how they impact so much on your ability to keep going.
So I can only suggest that he needs to understand you can not keep going without some let up. He has to accept that not everything in the world revolves around him.
He has to see and understand as I do, it was a shock when I sat back and thought about it, I don’t like what I found, A grown man acting like a spoilt child.
I am trying to make amends and take a lot more responsibility for my actions.
Take care and sorry I haven’t any magic wand, and please accept an aspie hug() from an Aspergers man who saw the error of his ways,
Lonewarrior - you are a kind man & I appreciate that greatly. You know what tho? You beat yourself up too much. As a NT spouse I've not been angry at my spouse or eldest daughter exactly - not since their diagnosis 7-8 years ago anyway - & am every day ready & willing to forgive & start over. I just hope for some effort on their parts & don't see it. Too - I don't quite understand the reference to Asperger's as opposed to High Functioning or any other differentiation. Here in Canada it's identified as Autism Spectrum Disorder only - no more distinctions - & after years of both teaching & living w/those on the spectrum I believe there's truth in the saying - if you've met one person on the spectrum, you've met one person on the spectrum. Give yourself a break - clearly I'm not the easiest person to live with or my ASD spouse would find it more acceptable to trust my words than he does. Your insight does you credit & I've no doubt that goes a looonnnggg way with your wife. Especially if you write to her as kindly as you have here.
So, let me focus my question & seek your help. My hubby of 25 yrs is 62, diagnosed 8 years ago, then a 2nd time 3 years ago. I am 52. While he says he "accepts" his diagnosis & has skimmed a very few of the resources I've provided, his behaviour says otherwise. I believe him to be a man in a great deal of pain & anxiety most of the time, unable to identify or experience emotion at all. He will not participate in anything that would help him identify, name & allow to leak out any frank emotion - he's highly passive-aggressive rather than violent, I believe as a result of that involuntary repression. I think he experiences a great deal of compassion at some level but it causes him nothing but extreme pain & there's zero expression of it. The knowledge that he himself causes a great deal of pain, is I think, even worse for him, so when I try to effect change - saying for example, "when you do not respond to me verbally, my feelings are hurt & it causes me frustration." - I think this knowledge hurts him, causes him to retreat further & often engage in further hurtful behaviour as a kind of "cover up" - usually implying or saying something along the lines of - you don't feel hurt, no reasonable person would be hurt, you're an idiot if you're hurt. I don't think he's trying to be as mean as that sounds - he IS a good man - but it is a defense mechanism he uses liberally. I have to get around it somehow. I think he's fully cognizant of how his behaviour hurts others & it hurts him so much he just shuts down &/or speaks defensively.
What do you think? Might there be a way to get past his pain & shut down, to persuade him we're actually on the same side? Is there a better way to be specific about what exact behaviour I'm asking him to modify without triggering him?
So the next question is more pragmatic & really more important now. We're in a bad place right now between my deteriorating health & some dreadful decisions hubby made - not intentionally but with catastrophic consequences. Lack of insight paired with being taken advantage of by the unscrupulous & his 100% inability to share any info. After years of doing all the care taking, I need hubby to take on some tasks I can no longer manage in order to save our family. I've tried giving him lists - which he loses, describing the consequences of inaction, giving one task daily & reminding him - but am getting no where. I'm sensitive to wanting to accord him the dignity he deserves but these things are urgent & if not done will damage all of us significantly. Do I have to reduce this to "I'm the boss & you're the stubborn employee" or might there be other ways? How does one move an individual mired so deeply in tunnel vision & inertia? Is it possible do you think? A thought process at work that another person on the spectrum might recognize but I cannot?
I suspect some of what seems like stubbornness has grown out of his family - completely estranged - as well. It's clear the ASD is multi-generational - his grandfather & mother were very obviously on the spectrum, his brother, his wife & their children are. His uncles, aunts, their spouses & their children are too. Hubby's generation & their offspring have chosen formal diagnosis & the culture is grim. There are very few NTs sprinkled in there & hubby is estranged largely because a) he married a NT & b) unlike virtually every other ASD relative, he's a very quiet artist w/out a business or self-preservation bone in his body. Despite deploring his families behaviours, which amount to cruelty even to him, he still has this long-held, knee jerk belief that autism is correct & superior whilst NTs are "off". He doesn't think about it, but growing up in a nearly entirely ASD family - successful if not kind - I suspect it's a deeply held belief.
So, even if nobody has answers, have I described the difficulties clearly? Does any of it sound familiar to anybody else?
And yes, my 19 yr old is also on the spectrum, but higher functioning than her dad & with some coping skills for her anxiety & expression. She's in university - home for the holidays just now. Our youngest, 17 yr old daughter is not ASD, but was born w/a rare brain disorder that amongst other things means she's developmentally about 4 yrs old.
Thanks so much Lonewarrior. You really have made me feel some better with your encouragement & openness about your journey. Hugs right back & greetings to your wife who surely recognizes your efforts to honour her. :-)
Hi TenaciousT (great handle!)
I'm a 58-year-old male who was only diagnosed in 2015. All of my life, though, I knew there was something 'different' with me as I always struggled with things that others seemed to take for granted: friendships, relationships, routine changes... and cohabitation arrangements of any kind. Apart from when I was living at home, and during six months earlier this year when I was giving full-time nursing care to my mother in her home, I've only cohabited twice in my adult life. The first occasion was when I was married. I loved my ex-wife very much. But I couldn't make it work - or it wouldn't work, whichever. A large part of the reason, I now realise looking back, is that it threw me out of my natural psychological space. I was used to having a certain order to things. And that order all broke down, and I couldn't cope with it. Silly things, maybe... but I would do all of the cleaning, and it had to be done all at once on a Friday evening to leave the weekend free (a routine I still keep to now). I could only settle once it was done. Because I did it all, I was conscious more of keeping the place clean and neat. I would always, for instance, wipe my feet when I came in and take my shoes off before stepping over the carpet. My ex-wife never would - even if her shoes were muddy and wet. She almost did it deliberately, I think, in the end. She'd just say 'Let it dry and clean it up then', which I couldn't do. I couldn't leave it. I tried reasoning by saying 'It wouldn't need doing at all if you just took your shoes off like I do.' But no. There were lots of other little niggles like this. I did try very hard to compromise, I truly did. But in the end, the sum total of lots of little things drove me to distraction. I also am a person who needs his own space a lot, away from anyone. My ex-wife respected this, to a degree - but then would often barge into the room I used on the pretext of getting something. At the end of a couple of years together, I began to drink to cope with the anxieties all of this threw up. By 4 years, it was all coming to pieces. We finally divorced after 5 years. My own perceived and admitted failure to work at it was a source of great grief for me for a long time afterwards. Again, I say - I really did work at compromising. The same in my second cohabitation relationship - except here, things were different in that my ex-partner insisted that I adapt to her needs much more. She refused to do any chores at all - including shopping or laundry - because she found them "too exhausting". She had BPD, but I actually believe CFS may have been at the root of things. She refused to go out. I could only talk to her when she wanted to talk. Physical relations could only be when she wanted them, and in her preferred way - and they had to be over very quickly. You could say, perhaps, that this was giving me a taste of my own medicine! But again, with her, I compromised... until all I was doing was compromising. Once again, I hit the bottle to cope. Once again, it all blew up.
I now live alone out of choice. In some ways, I think I just don't want to give anyone else the burden of having to put up with me - so at least I have that insight. I know how hard it can be. Like living with someone with a serious illness or physical disability, adaptations need to be made - and they can be taxing in even the most loving relationship.
Sorry... I'm not able to really offer any solutions. Just my own perspective on it, from the ND side. It's difficult, and I don't envy anyone who has to deal with it. I hope there isn't genuine unkindness or stubbornness behind things in your situation, though you know it better than I do. I think I know what you mean about how it seems to be being used as a weapon. But that then means that you're an enemy in the camp. Is that how you feel about it?
I hope others can offer some broader insights to help you.
Martian Tom - I really appreciate your candid description of how it has been to be in a relationship from your perspective. Particularly that you loved your partner, it simply didn't work anyway & you have regrets. It definitely helps to think that my hubby may experience regrets he's unable to express. Clearly you understand how i feel about being the one having to make the compromises but unlike me, you got out. Regrets or no, it sounds like you made the best decision. Everyone deserves their own soul & it sounds like you saved yours. Thanks for sharing that.
I smiled reading about some of the niggling issues you mention. Unlike the majority of folks i know on the spectrum, it's my spouse & daughter whose difficulties w/executive function mean chaos reigns in our environment! I'm the one setting up the shoe rack for muddy shoes whilst they're tramping thru the house never noticing or caring. I find these aspects unusual & really irritating. Frankly, after 25 years of marriage I'm tired of removing dirty socks from the stove top & explaining personal hygiene over & over. I thoroughly understand how that kind of irritation can really add up. I'm fortunate in that I've been able to kind of pare down some expectations - although reading your post & pondering makes me understand that I haven't really pared down enough. You're right that the environmental/cleanliness things are a big part of daily frustrations that leave me unable to better cope with bigger issues. So you've given me a step to take I didn't have before; perhaps there's an individual in these forums whose executive function issues lead to a chaotic environment. Perhaps hearing about that perspective will help me find ways to help hubby, daughter & me all meet an agreed upon standard for clean & tidy & stick to it. I've tried b4 with what I know as a teacher - lists, signs, assigned chores, visual cues, etc...but none have ever worked. Your words encourage me to find out why they didn't work & to recognize how much of an impact these environmental things are having on everything else. Thank you Tom!
As for stubbornness or cruelty - Hubby's personality is very gentle, but I think the autism affects him to such a degree that he operates instinctively on all levels. He's unable to evaluate behaviour or words either b4 or after so there's never a bad intention. I suspect that regardless of ASD, he's just a stubborn fellow like many people are, but there's an inability to find or judge any flexibility because of the ASD. Again, not intentional, just extremely unaware. Daughter on the other hand, is higher functioning & despite regrets later, is often a right bully within the family. I love her profoundly, but am grateful that she's away at uni, home only for holidays, living on her own & liking it.
Thank you VERY MUCH Tom.
I'm glad if my words have offered you some insights.
I also regret that, although my mother was the centre of my world - the only person who truly understood me, and the only one I could go to for support and love when the rest of the world was rejecting me - I could be an insufferable bully with her when I was growing up. Even in adult life. She was the only person I used to really argue with - often reducing her to tears. I poured all of this out to a therapist I saw a few years ago (the one who first identified evidence of ASC in me), and she said it was probably because our relationship was based on unconditional love. I argued and fought with her because I knew I could, and it wouldn't affect the love she had for me - and vice-versa. Even when I was nursing her 24/7 during her final illness, we would have words - and it always left me feeling horrible afterwards. Why do I continue to hurt her in this way? But it was a difficult dynamic. I was sharing a confined space with her, sleeping on a camp bed, and had to be vigilant with her throughout the day - monitoring her medication, her diet, her moods. I was constantly on edge. And I was watching her progressively deteriorate. I've written a book about that time, which is as much a confessional as it is a testament to such a unique loving relationship - and such a remarkable person, which is what she was. I have huge regrets about the way I treated her sometimes - only moderately assuaged by the fact that I gave her all I could to make her final days as comfortable as possible.
These relationships are a minefield. All human relationships are, really. My last partner - the one with BPD - understood my condition. But only up to a point. The eighteen months we were together were a very fraught time. We had some ferocious rows, and I was verbally abusive. I hugely regret this, too - but I was at my wit's end. When it all fell apart, she refused to accept any explanation of my behaviour that was based around its being in response to her behaviour. But, in large part, it was. I simply could not cope with this person taking control of my life, which she did. In hindsight, and with things I've found out since, I realise she was narcissistic. She was used to having her own way, and would go to any lengths to maintain that way.
But then... I'm like that, too. Just for a different reason.
What happened!? My reply to NAS35934 (Ithink that was the number) just disappeared in mid-writing along with their advice I was responding to! Anyone know how this could happen?
The unconditional love thing paired with poor behaviour is frankly, a given in a lot of family relationships & I'd say mums usually get that. I know it's a big part of my daughter's behaviour at home. She's quiet, responsible, mannerly & self-controlled everywhere else: frequently a bully at home. But she's been this way since she was tiny & with us, nighttime usually means apologies & often agony as she questions why she's "This way". She can be vulnerable, rude, outrageous, kind, creative, sad....anything she needs to be with me & it's always 100% safe to be so. I definitely don't like the bullying & have done everything I can think of to contain it - she's not a "bully" but a person dealing w/internal struggles I can't judge or gauge. I'd lay odds your mum knew from the get go that however things made her feel at the moment you spoke the way you did because it was safe to do so. Didn't need a diagnosis to know that either - it happens w/NT kids too. Your mum knew it was a kind of back-handed compliment.
As for verbal abuse, that's what I'm the one trying to avoid. In 25 yrs I've reduced us to that a handful of times, mostly in the earliest years & I hate it & myself that I've ever communicated that way. Like you, I felt pushed to the absolute limit & blew. The sad bit is that it worked, temporarily at least, each time. I've tried seemingly endless, thought out, researched, kindly, side ways, written - everything I could think of, devise or find to communicate with hubby & elicit response since then with zero results. I've run out of ideas & am no further ahead. But desperately needing his help now - urgently needing it - I'm afraid i will end up turning to speaking as i once did as a totally uncomprehending newlywed dying to get a response of any kind.
Having read the response on this thread that somehow disappeared & that of others in the forums, I think I've figured out something for sure. It's a long story how we ended up married & why I stayed, but this I know: My spouse is nowhere near as high functioning as the members of these forums on the spectrum. Not even close. Hubby's 2nd dx included the notation that he was developmentally between 9-10 years of age but never explained it. I've thought that was simply a skewed score due to the ASD. Reading here tells me there was likely no skew. He's a relatively well-known & well-respected artist, although as is traditional, not financially rewarded. There he's brilliant - everything else he's very childlike. He could not express anything remotely like what I'm reading on these pages or do the things others reveal they do - like living alone, paying bills, working, caring for elderly parents, planning, caring for children, etc...Hubby is quite a bit closer to savant than what folks call Aspergers.
Which helps me understand better how to elicit those things he can offer & how. I've always gone to great lengths to defer to him as a man, a father & an adult. But maybe some of that trapped hurt look in his eyes & some of my frustration would end if i just stop that & instead treat him as i would a 9 or 10 year old boy. My profoundly developmentally delayed daughter is cognitively about 4 & I set up her life so she can succeed at that level & so she does. If I gave her the structure I would accord her age -17 - she'd fail, be miserable & because she doesn't have ASD, be able to tell me so. Hubby can't tell me but if I give him the same developmental age-appropriate parameters maybe it could work for us all. I've been so careful about his dignity, but in doing so, maybe made it impossible for him to succeed. I can but try.
Thank you Martian Tom, Lonewarrior & others for being so forthright & responsive. You've given me several insights I'd have missed completely if you'd remained silent. I greatly appreciate your help. :-)
i have had a whirlwind night with my wife tonight her emotions exploded tonight in a big meltdown i have her on the phone with her mum at the moment i am hoping that will help her, i am really trying to support her as i know moving to a new town is very hard for her, i wish we didnt have to move from our home town i really do but we didnt have a choice and i feel terrible that we had to make this move as i feel like i gave her all this stress but i really did not have a choice there was no where else to move too.
Oh my goodness - not to worry at all. I just thought it was a technical glitch. I appreciated your answer & it gave me some insight into things I had not thought of. Thank you. When you have time I'd be really happy to talk further - I'm in the same position having to move my ASD spouse & daughter & complex special needs daughter cross province (Canada) in 4 months after 23 yrs in the same home. No money, no family either. Of course you had no choice, as i have none. Anything i can offer by way of encouragement or steps I'm taking to help my ASD folks, please ask - use my moniker in a post - I'll get the msg & try to help. Hope you & your spouse can find some calm & peace tonight.
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.