A/N: This post is raw and more of a collection of thoughts than a coherent whole. I’m posting here as a signpost to myself. It’s definitely intended to be a comprehensive commentary on the subject of independence and disability.
I. Theory, Background, Questions and Concepts
What is the relationship between being dependent and being independent? Certainly not the opposites that we assume at first glance.
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There are common themes that you’ll encounter if you read enough autism parenting-related blogs and comments:
“My child is severely autistic and will never be able to live on their own.”
“My child is going to depend on me for the rest of their lives. They’ll never have the skills to live independently.”
The assumption that dependent and independent are opposing states is implicit in these types of statements. A person who lives on their own is considered independent by default; a person who needs the support of others to conduct their daily life is dependent. Little acknowledgement is given to the gray areas of reality.
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Consider this scenario:
My elderly neighbor lives alone.
Based on this statement, you’d assume he’s independent, right?
How about this scenario:
My elderly neighbor, who lives alone, is in poor health. He has daily visits from Meals on Wheels and a health aide. A maid service comes every other week to clean his house, a lawn service keeps up his yard, and various neighbors drop by daily to bring in his newspaper and check on him.
Is he still independent? Dependent? Something else we’ve failed to consider?
Oh, wait, I know what many of you will say . . . we’re all interdependent. This is true. Few of us make our own clothes or grow our own food or generate our own electricity. Even those of us who are able to cut the grass or clean the house might hire someone who can do a better job of it.
Does that mean some of us are more interdependent than others? That independence and dependence are fictional extremes where no one actually lives?
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The issue of dependence/independence/interdependence is one that is understandably surrounded by intense emotion. Parents worry (or in some cases seem to simply decide long in advance) that their children will never live independently.
Disabled adults assert (or attempt to assert) their right to make and direct their own life choices, regardless of the amount of support they need to carry out those choices, often in the face of strong objections or even physical peril.
Meanwhile, allies point out that we’re all interdependent so why hold disabled people to some fictional standard of being wholly independent.
Others, often the disabled themselves, say that independent living is a valid goal and one that every human being has a right to.
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What does independent mean in the context of disability?
What it doesn’t mean is living alone, doing everything for yourself or having no supports. Though that’s the standard that many of us, especially those with developmental disabilities, are pushed toward as a defining goal of having achieved adulthood.
Independence, as an adult, means having control over one’s choices and one’s life. A person of majority age could choose to live with their parents or other family members and still lead an autonomous, independent life. How well that works would depend on a family’s ability to offer a support network while respecting the choices of their disabled family member. But a person freely choosing to live with their family of origin, a caregiver or supportive person is still an independent adult.
II. Practice, Introspection, Observations, Reality
If independent means freedom to make my own choices and direct my own life, what does dependent mean?
I depend on The Scientist for a lot. And that’s never been an issue for me in the past. I’ve always viewed us as an interdependent couple.
Over the years we’ve fallen into an efficient division of labor. Sometimes we jokingly say that he’s the “Minister of Foreign Affairs” and I’m the “Minister of Domestic Affairs” in our house. He deals with hiring repair people, negotiating major purchases and keeping the car in good working order. I make sure the bills get paid on time and we leave the grocery store with the necessary foodstuffs and the trash gets put out on the right day.
When it comes to household chores, The Scientist is as likely to make dinner, vacuum, do a load of laundry, wash the dishes or take out the dog as I am. We don’t consciously divide up chores and yet they never seem to be neglected to the point that one of us feels the need to point it out.
Recently, though, I’m becoming more aware of the balance of these tasks, and of keeping score in a way that I never have before. And not for the stereotypical reason of a husband who does too little around the house.
Instead, I find myself keeping score because I feel like I’m becoming increasingly dependent on The Scientist for day-to-day things. Wondering if he’s taken the dog out one too many times this week or cooked dinner too many nights in a row or done the dishes again.
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That summary points to a personal definition of dependence: having to rely on someone else to help with or to do things that I previously did by or for myself.
There’s a clue in there, too, about the reasons I find myself chafing at the notion of dependence: Change. Comparison. Judgment. And of course the resulting guilt. Always the guilt.
I used to __________ but now I need someone to do it for me.
__________ used to be easy, but now I need someone to verify that it’s done right.
I’ve always been the one who __________ed, but now sometimes I can’t do my share.
In fact, the level at which I was able to do ___________ and the importance of ________ to my self concept is directly related to how much I resent needing help with it.
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This shift from feeling interdependent to dependent is an uncomfortable one for me.
Where does this creeping feeling of dependence originate? Certainly not from a lack of independence. I’m free to make my own choices and do. I’m able to direct the course of my life as much as the average adult.
It doesn’t come from an inability to acknowledge that there are things I’m just plain bad at or need support to accomplish. That’s something I’ve made my peace with. (Though apparently those things are a very specific predefined set of things and anything that falls outside that definition is subject to a hostile and lengthy examination by my subconscious.)
Not from any illusion that I’d thrive living on my own, something I’ve managed to go a whole 46 years without ever doing for an extended period for time.
Increasingly I think it’s rooted in loss. Dependence is like a catch-all bucket, a place to toss the things I’d rather not examine more closely. The resentment I feel at “giving in” to whatever is happening to my language abilities. The anger at the parts of me I perceive as diminished, at my limits and how vigilant I have to be. The frustration that lurks in places that used to be a source of comfort. The fear that creeps in during quiet moments.
Dependence has become a proxy, an easy target. It’s so simple to say, “here are all of the little day-to-day events that make me feel dependent and if I can just do those things myself instead, all will be well.”
And that’s a convenient lie, because clearly I have bigger issues to work out than simply the strategic rationing of resources.
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Which brings me back to where I started, unable to define a clear relationship between dependent and independent and no longer even trying. Having strayed far from my original idea, at least now I see the problem more clearly.
What I’ve been struggling with is not so much dependence, but acceptance.
Musings of an Aspie 
I’ve given a lot of thought to this subject as well. When my wife and I first moved in together, we had a lot of arguments about the level of cleanliness of our home and my contribution (or lack thereof) to keeping it that way. Later on, we bought a house and had some similar issues with lawn care. Since we’re both gainfully employed, the solution to both situations was to ultimately just hire someone else to do them, thereby removing my dependence on her to keep things to an acceptable level.
At the time, it was just a solution to a problem. I never thought about if it had any relevance to my ability to live “independently” long term. In the light of my diagnosis though, suddenly these things seem to take on new meaning. It reminds me of a quote from your book:
“Before, I was me and Asperger’s was Asperger’s… I thought of [my thoughts and actions] as my own. Asperger’s Syndrome was something that described other people.
After receiving my diagnosis, I was no longer me and Asperger’s was no longer a label applied to others. Suddenly, I was Asperger’s and Asperger’s was me.
After, everything I do, say, think, feel, experience is Aspergerized…. I no longer knew where Asperger’s ended and I began.”
It’s interesting the way that little label changes where the presumption lies. If you’re NT and you decide to go explore a local park on a whim, you’re just indulging a whim. If you have ASD though, that’s “dangerous wandering”. If you’re NT and you hire someone to do your cleaning or your lawn, you’re just freeing up spare time for yourself, but if you have ASD, you’re not “living independently”.
What’s the difference between being unable to do something and simply being extremely averse to doing something? What’s the difference between being extremely averse to doing something and just having a preference not to do it? More importantly to the topic of presuming whether or not people can live “independently”, how easy is it to spot those differences as a third party?
We’ve hired someone to clean on and off over the years and post-diagnosis, I came to think of it as an accommodation, whereas before I thought it was a luxury. Now i know that having that regular every other week thorough cleaning makes it easier for me to keep up with the day-to-day stuff and reduces my stress levels considerably. I also know that it’s a solution that I’m fortunate to have access to, because for many people it’s not a possibility.
The questions you pose at the end of your comment are really important because the answers to them can often be the difference between pathologizing a condition or not.
When my mother in law started having memory challenges and forgetting to eat (she was 95 at the time) we knew it was time for her to come live with us. That meant packing her up, selling her home and moving her cross country to live with us (New Hampshire to Illinois). It was an involved process, and I became her primary caregiver for the last two years of her life. It was filled with challenges, and sadness, as well as a lot of joy and fun.
Helping her to make the adjustment was challenging for everyone, and not without it’s humor. I could see the difficulty in her as she went through moving out of a home and neighborhood she had lived in for over 40 years. She raised her son in that home, buried her husband in that home, and was a deeply independent New Englander. Helping her to make the transition we did everything we could to make it easier. We packed as much as we could to ship it and move it with her. We bought a bigger house so she could have her own little suite. We got the game show network because she loved solving puzzles and mind teaser kinds of shows. We bought a baby minder walkie talkie so I could hear her at night if she woke up confused. We bought smoke eaters for her bedroom so she could still smoke – with supervision. We were not smokers. All of these things were in support of her quality of life and we are so glad that we could do them, and we know that she appreicated them. We did it because we loved her and did not want her last years to be in a nursing home.
At the same time, as I face this big change in my life, in our families life, I was stretched beyond what I ever thought I could be or do. Bathing, keeping Depends (underwear for incontinence) on her because she did not realize that a cough could lead to a leak, sleeping with one eye on the baby minder and so on.
That’s really when I began to accept help. I still had a hard time asking, but I began to accept it. A friend encouraged me to hire a cleaning service and it was one of the best things that I ever did. They came once every other week and it was such a treat to have my home cared for in the same way I was caring for Frannie.
That little bit of extra care in my home was not only a balm to me as I cared for Frannie, I realize now, all of these years later that it gave me a gift of self care that I might not have ever felt deserving off had it not been for that. After she passed my husband had a job transfer out of state and we moved and have not had someone come in for cleaning other than one time as a barter agreement.
Now, rather than paying someone to come in (saving money) I’m looking at how to let go of things that clutter and make cleaning easier.
If the time ever comes again that it is in our budget to hire someone, I’ll consider it a gift of self care, like going for a check up. If I can spend $20.00 a month on Starbucks, I can put that same money towards things that support my well-being. I don’t question an occasional Starbucks so why would I question something like cleaning that eases my stress. It was actually a boost to myself esteem that she came to clean for me. Like I deserve this care, wow! I always appreciated what she did and would leave notes for her thanking her and always gave her a really good tip. It’s what I would want if I were cleaning someones home (and I have done that for a living before so I know what it takes).
You could equally turn that (sort of) on it’s head and say that in some cases insisting on doing something yourself is an accomodation – lots of people get window cleaners to come round every so often, particularly to do their upstairs windows. I insist on doing mine myself (luckily I have upstairs windows that open enough for me to clean the outsides from indoors because I’m no good on a ladder!) – not because I can’t afford a window cleaner or don’t want to spend the money, but solely because I don’t like the intrusion that a window cleaner would be for me. Having someone appearing at a window, and turning up when it suits them and not at an agreed set time, making my dog bark & scaring my cats…. Hell no! Having a cleaner would seriously stress me out whereas I enjoy cleaning (I know, strange or what) – it’s the feeling of organisation and being in control of my surroundings (for as long as it takes eldest cat to settle on freshly-laundered spare bed, youngest cat to put mucky paw prints on kitchen floor and dog to do both!)
I guess my vague, not very well explained (!) point is that one (wo)man’s accomodation is another’s luxury and vice versa. Everything can be seen from at least two viewpoints if not more. So we shouldn’t knock ourselves for the choices we make. We only get one shot at life and personally I believe that we should be enjoying it as much as possible – and if that means making life easier for ourselves then so be it!
Yes, to a lot of what you said.It was a big stretch to begin with to let someone into our home to clean. However, the stretching that I did to be able to take care of Frannie was far more of a stretch than someone coming in and cleaning. By the time I had a person coming in to clean it had already been a few months of Frannie living with us and by then my sense of routine was already turned on it’s ear with a change in schedule, watching out for things like Frannie roaming the house and turning on the stove when she did not know how to, or waking in the night with night terrors during a thunder storm and trying to make it up the stairs to the main level in the dark. I later learned after she had passed that she had survived a tornado on Lake Winnepesauke in New Hampshire when she was a young mother with her only son (my husband). Her night terror was that memory.
I totally get the idea of insisting on doing something myself as an accommodation. There are times when I refuse to let someone help me, and having them help me might have been the better thing to do, but I almost go into meltdown over wanting to do it myself. I know it’s so much more than simply doing it myself. It’s a control thing, managing my environment. If I’m feeling more stressed, more at my sensory limit I am much less likely to want help with something.
I had that happen tonight. Last night I was carrying a glass of juice to a coffee table along with some crackers and cheese. I dropped the crackers and in an attempt to catch them I spilled my juice. That led to five minutes of clean-up. Fast forward to tonight and I brought my juice and condiments to the table first, then came back a second time with my meal. My husband piped up, dident that go better than last night, making two trips (with a little laugh). I wanted to throw something at him. Urgghhh. That led to me being super self conscious and angry. We use our DVR to stop and start a program when getting something from the fridge or putting a meal on the table. There are a couple of programs that I really enjoy on HGTV. After already being agitated I wanted to control the TV remote. I know it was silly, it was a TV show but it almost lead to a shouting match. Because I reacted to his comment on my spill and trying to do things myself. It goes deeper too, to accommodation, because I can see the things in my life that are changing, and things that I ignored before. How sometimes I drop things, or my hands just don’t seem to do what I want them too. My struggle for words and so on. I don’t like it, and I’m struggling with my own accommodation to myself, let alone anyone else to me or me to them. I just want to spit nails sometimes, yet I realize it’s part of being who I am, demanding so much from myself, when in reality, I am doing the best I can.
Accommodation really does seem to be a matter of perspective as you noted.
Now if that was me the juice would probably ended up spilled the second time too – only over someone’s head when they’d made their ‘joke’!!
It’s exhausting when you’re sleeping with one ear open for someone else. My youngest cat had cystitis for the first time over Christmas (eldest did too but I’m used to him) and I was panicking quite a bit (coughs). At one point, every time he went to the litter tray I was there checking that he was producing something and wasn’t blocked (as that can be fatal if not caught quickly) – so when he’d go at 3am I’d be leaping out of bed! That was only a few days of interrupted sleep so I can only begin to imagine how exhausted you must been inside.
And I’m like you – if I’m already struggling then I don’t want help, I just want everyone to stay well away and let me do stuff on my own. Having people around depletes me quickly so I need to eliminate that and implement as much control as I can as quick as I can.
“Now if that was me the juice would probably ended up spilled the second time too – only over someone’s head when they’d made their ‘joke’!!”
Yes, I was angry, and more than angry – hurt. Angry with myself at some level for spilling the juice and dropping the crackers, angry at him for trying to be supportive and making light – when that is what he does – and deeper still – all part of my putting more pieces together that are all part of the ASD puzzle that I had ignored or not understood before. Tripping and falling over my feet, dropping things, fumble fingers, losing words, knowing something so well in my head that I could facilitate a course on it – and yet not finding the words to explain it. Those things and more – all coming to the fore as I stood there last night reacting to his comment. He had no way of knowing the cascade of things he had triggered for me internally. I meanwhile was seething! I slammed the silverware drawer to five voice to my frustration. Then I slammed the microwave shut. Now knowing me you would know that I do my best to not make waves, to see all sides, to choose harmony, peace, and compassion – but in that moment – I just wanted to slam something. I think that is actually a bit of progress for me for while I know from a stress related prospective what stress hormones do to the body – in that moment I was giving voice to my recent diagnosis and understanding all that it means.
Cynthia responded to someone who posted in the Adult Diagnosis forum about their husband understanding what ASD means for her. I know this is the same process. There is so much for both of us to understand about ASD. He what it means for me as a women, and our relationship together and a host of other things, and me, a lifetime of not understanding and all of the ways that ASD is me and now processing that, owning it, having peace with it.
This topic of accommodations is a timely one for me, where the most important accommodation I am realizing, is for me to myself.
2 things spring to mind reading this:
Most support is invisible. And because of that you get this perceived dichotomy of on the one hand independent people who need no support and live by themselves and on the other hand dependent people who need support and who therefor live with parents or in an institution.
Those parents, who fear their child may never live on their own, don’t seem to realize that other people may have support that is not visible to them, because it takes place at someones home. Like Meals on Wheels, cleaning service, or a support/coach like I have.
Another thing I’m thinking of is how certain supports are normalized. Many, many, many people depend on their smartphone nowadays, but we don’t consider them independent because they can’t remember all their appointments and all phone numbers.
Yes to all of this. And I think that often normalized support and invisible support are one in the same, especially for nondisabled people.
I wonder if females worry about this more than males?
I think we might worry about it in different ways or that maybe it’s not gender-dependent. In fact, it’s probably more role-dependent. For example, someone who is the sole earner for a family might have a different definition of “becoming dependent” than someone who isn’t employed.
That makes sense. I’ve just gotten out a long stretch of unemployment, and I know I felt terribly slipping into being dependent.
I think women are socialised to take on not only their own tasks, chores, activities, but also their partners, children, elder dependents. Whether it’s the housework or simply remembering to send extended family birthday cards. When women lack or have impaired executive function and don’t manage these tasks adequately or at all, the guilt and feelings of inadequacy can be horrible and skull destroying.
Sorry, soul destroying, tsk.
Ah, yes, good point.
You put it well. It is horrible and skull destroying.
Skull destroying and soul destroying – or at least super challenging 😉
My wife has been struggling with these feelings for several months now. Her mobility has declined significantly over the past year leaving her unable to manage many household tasks, but she still feels that she ought to be able to do them. Instead she has increasingly come to rely on me to do these things, causing her to feel that she is a burden.
She’s working towards acceptance of the new status quo but it’s not easy and is taking time.
I can totally relate. It’s almost like living in two worlds – reality with its constraints and some parallel fictional world where mentally nothing has changed. It’s hard to reconcile the two because I constantly forget that I need to.
Sending good thoughts and strength to your wife, as always.
“What I’ve been struggling with is not so much dependence, but acceptance.”
Thank you for that simple statement… you just shifted my perspective, ever so slightly, but very profoundly, on some issues I’m having with my (aging) parents. And also some issues I’ve been pondering about myself, while I’m trying to figure out how to improve my own quality of life now that I’m finally using the right owner’s manual.
I’m glad you found it helpful. I’m thinking about posting something I’ve written in the past about acceptance in the coming weeks. It seems like it’s time to share it here.
I’m looking forward to reading it.
Thank you for this very timely post.
You’re welcome. I hope you find some peace with whatever form this struggle it taking for you.
You have eerily described how I’ve been thinking the last few months. I’m not Asperger (my grown son is), but I’m approaching elderly. My son, who still lives at home is independent but people question it. I am increasingly relying on my son (to drive me places, for instance), and not feeling very “independent” but people still think of me as the independent one. And acceptance is very much what I need to work on.
It’s a lot to process, isn’t it? And people’s assumptions aren’t especially helpful, especially when they veer off into judgment.
Thank you for this topic discussion. I am a middle-aged adult with Aspergers. I live with my mom (85 yo), and I have always been dependent on her for so many things – actually most things.
At one point I thought maybe I could take care of her, since both my NT sisters work full time jobs, but I’m not so sure. It’s “easier” to let her do (dishes,cooking etc). Kinda weired – we both have “time issues” – it’s like we both woke up one day & she was 80+ & I was 50+ (vs 50 & 21 respectively). Today I wanted to make my own meal (I’m feeling that our roles are reversing so I better step-up & do my part) I felt so proud of myself. I got through 85% of the prep & cooking & then I glitched (my term for when my Aspergers interferes with my ability to function) I forgot to turn the burner off & I almost burned the food, and so my mom stepped in & took over for me –again.
Just had a thought about your elderly neighbor down the block. It’s nice that all those little supports were already available to her, and when she needed them they were already in place for her (maybe she needed a little help with the paperwork?) I wonder if she was ever asked or questioned regarding the validity of her need for extra support. After my mom dies, I wonder ………
Even though our living situations are different, I can relate.
Realizing that change is hard is step #1. Getting to step 2 & higher is going to be more difficult than I can imagine. Hang in their. We are going to make it.
Thank you for writing on this topic.
What I am struggling with is the implied assumption that since I am able to live in a “neurotypically independent” manner AND work full-time, I must a) not need any support, b) have a wonderful quality of life, or c) be fully capable of solving any issues on my own.
So the response I get to “I want help making friends and having meaningful relationships” is go hire someone. Here’s a 12 step process to engage in before you can even start on the task you are interested in.
Able to live independently is NOT a proxy for quality of life. Yet I can’t even get the level of support provided to my two neurotypical sisters as a result of their being married.
Yes! Me too…whenever I am desperate enough to ask for support- even in the autistic help aids- there is TONS of paper work and steps that my brain can’t get around…so to get the help- you need help and even then it is rare that it ACTUALLY helps. They are lucky I can do research and paperwork if I have to – but what about the people who are not gifted in that area? I excelled in english and also in what I can perceive people want of me in those circumstances…but if I was any less- I get panicky just thinking about it- and they EXPECT people to independently fill out the forms to get the help???
The only thing I actually followed through with were my kids diagnosis and a few years later the disability grant…IT WAS SO MUCH WORK- tons of papers, tons of appointments, tons of research on my part- I worked damn hard for that money but only my family knows we received it because people judge that is a hand out- and while it helps its not a ton- it gets us just out of the poverty line. I worked more hours in the accumulation of years and research and book reading than a lot of people do at their normal jobs so we deserved that money. It’s laughable that even if you DO qualify to get it that it comes with stigma and restrictions to constantly “prove” how disabled you are. I had to use disability language I disagree with to even get considered…its a game really in a lot of ways. Some of it was a very degrading process but because it helps my kids so much to have those funds and money DOES help support – it was worth it and my “wage” of contribution to the family. I EARNED it.
But I don’t qualify…I have to hide my own diagnosis in most situations because it works the other way…I get my autonomy taken away. OR I get the condescending social worker or whatever telling me misinformation about my own diagnosis or kids and I KNOW I am the more intellectual one in the room but because of language anxiety or executive functioning issues I can not show that- very frustrating. Nothing is worse than sitting through an hour appointment and realizing what this person is saying is ignorant, non applicable and non helpful when you were there for support…and sometimes I AM THE ONE who ends up educating and supporting THEM. Yet on my file- its the other way around to them. I actually can’t talk about it anymore it makes me so flipping mad….there is a need for support that gives dignity, autonomy and respect to differences …too often I see the people in the local group homes being forced to do sensory overloading jobs no other person wants to do (like emptying garbages) and being forced to act like NTS as their rehabilitation…no wonder some of them try to commit suicide. Its a HEAVY complicated topic.
I am seconding all of this, especially the “having to prove how disabled one is to get the necessary help” and the “educating professionals on stuff they know jack about”.
I myself am in the process of applying for a specific letter on my handicapped pass. And my new GP, after having been as ableist as they come anyway, very obviously didn’t understand a thing I was telling him … claimed he did. Believed him, oh how stupid of me, but his letter showed otherwise … now I actually had to sue. I hate this. I hate this so much. I will have to see a new “specialist”, probably, so court decides what to do with me.
And the idea of another ableist half-god in white or however those people regard themselves if they believe they know more about autism than someone who has lived with it for YEARS being responsible for my future, AGAIN?
Makes me want to throw up.
And those stories about the group homes are depressing.
A huge YES to both Kmarie and Svenja. And all of the other comments I have read so far. I swear to God – Goddess – Buddha – that I often know more about my own diagnosis than the white coated MD’s that are sitting or standing across from me. And then when I speak up about something I know, I am talked down to in a condescending tone like I’m a five year old child, made to feel shame, how dare I read about my own condition, or believe what I read or hear from someone else. I’ve been dismissed more times than I can count by smug faced people pretending to care when it seems that often their objective is simply to be right. Since when does the MD after your name mean you are done learning, or that you patient is not capable of contributing to their own well-being. What happened to a team approach. Have their ever heard of the PlaneTree model http://planetree.org/ ??? Or Patch Adams http://www.patchadams.org/ Urggg!
I’ve learned over the years not to help and adopted an “I can do it myself” attitude – me against the world, yet I know that is not helpful, and most of the time, not true. There are areas where I need help, and it’s been a challenge for me to admit that. Especially in the case of when I ask for it, and in my naivety, I ask the wrong person and get hurt. That’s where the do it myself mindset has come from.
With the doctors who do listen, and there have been a few, I have been able to have a good conversation and share information with them. It’s a wonderful feeling to be heard like that. Even if they don’t agree with my take on things, they are willing to listen to me and grant my requests for medical follow-up with a specialist. As long as the insurance company does not get in the way and block coverage.
I think that I could have the equivalent of a degree too for all of the research and medical testing I have gone through over the years.
I mentioned to someone earlier today that it would be interesting to see a list of medical challenges that we share in common – anonymous for those that don’t want to share publicly – just to see what we might have in common, and has there been any research on these commonalities in the ASD community. For men, or women. Because I am a women, I’d love to see that kind of information. Things like how we experience puberty, pregnancy, Menopause (we’ve talked about that one here and it was great to see how much we shared), aging etc.. It’s another part of the “manual” that I think would be very helpful.
With that kind of information maybe we could fund raise or support a cause that is doing good research for ASD.
In 2013, along with being diagnosed with Epilepsy (also commonly seen in ASD) I was also diagnosed with a Meningioma. In English, that means brain tumor. It’s small and I am on a watch and wait status. No surgery unless I really have too. I found a wonderful online (Facebook) support group called Meningioma Momma’s. Women, and or their familes come and post, share about their diagnosis, their watch and wait status, surgery, post-op and the ongoing process of living with a brain tumor in all of it’s forms.
One of the cool things about this forum – and the matching website is that Meningioma Momma’s (MM’s) also donate what they can to fund research on meningioma’s. It’s not a lot of money, but it helps. Learning about how they happen, how estrogen might complicate the tumor, the role of diet, and a host of other things.
I wonder, are brain tumors more prevalent in those with ASD? I know this is slightly off topic on the one hand, but in the bigger picture, in the details too, I can see it fitting in because all of it fits into what dependence and independence looks like. For me it’s a personal definition. There are some things I can and want to do myself. There are others that I do need help with, even when I don’t always want the help, and other things where I’ve never really had to do this or that thing. Is that dependence? Or independence?
The dust is settling in many ways as I look at my life through an expanded lens of ASD. Being kinder to myself for things that I’ve not ever been good at, and judged myself for, sometimes harshly and painfully, is one of my goals right now. To support that and the best way for me to be both dependent and independent I’ve just purchased a year at a glance dry erase calender, dry erase contact paper and blackboard contact paper, and wallies that are dry erase and I am creating a whole wall to organize myself and the things that I want to accomplish. From household things like paying the bills on time to personal things like reminding myself to drink enough water, get up and walk away from my computer, and do things that fill me up. As soon as the calender comes I’ll be creating this wall.
This is a deep subject with many layers. Thank you for another great topic.
I did some research on brain tumors and autism and couldn’t find any links. Most types of brain tumors don’t seem to be genetic if I’m remembering correctly? I just read a bit about Meningiomas and I hope yours turns out to be the minimally problematic kind. Although the symptoms don’t look like any fun at all, even for the benign type. 😦
Thank you for your care and concern 🙂
There are some genetic components to brain tumors. In particular what I know is that the BRAC1 and BRAC2 genes can have a link to brain tumors. Those are the same genes that Angelina Jolie had and why she chose to do an elective double mastectomy. My sister was diagnosed with a brain tumor in 2007. Her’s is a glioma and cancer. It’s located at her brain stem so surgery is very dangerous so she opted for six weeks of radiation. The tumor is mostly stable, but the side effects – lot of pain, bad headaches, nausea, dizziness, exhaustion etc. all make for challenging days at best. She has beat the odds and is still with us, and spends a great deal of her days sleeping. She can’t work any longer and even doing things around the house is very hard. Her husband and son do what they can to help out. The reason I know about the hereditary part of the tumor is because when she was diagnosed her oncologist asked her about family health history and when she mentioned that our dad had had breast cancer and a double mastectomy, it raised red flags. It seems that there are certain kinds of cancers where things like brain, breast, and uterine cancer can be seen in a grouping. Thankfully all she is dealing with is the brain cancer as far as cancer goes.
There is still a lot of research going on with all kinds of brain tumors and their various types. Meningioma’s while not always cancerous (some can be depending on staging – which there is no way of knowing unless you have brain surgery and actually sample the tissue). I’ve heard doctors say, and read the same, that you can tell from looking at the CT – MRI films the nature of the tumor. Yet I have read and heard as many doctors say that a biopsy – aka brain surgery is the only way to know for sure. There are studies taking place right now looking into how a family history of meningitis might lead to a hereditary link. Quite a few of the people who post on the Meningioma Momma’s facebook page have shared that other family members have also been diagnosed with the same kind of tumor.
The general consensus of mainsteam healthcare is that they are benign tumors and nothing to worry about. Easy for them to say when there is something in your head that does not belong there.
“A benign tumor is a mass of cells (tumor) that lacks the ability to invade neighboring tissue or metastasize. These characteristics are required for a tumor to be defined as cancerous and therefore benign tumors are non-cancerous. Also, benign tumors generally have a slower growth rate than malignant tumors and the tumor cells are usually more differentiated (cells have normal features).[1][2][3] Benign tumors are typically surrounded by an outer surface (fibrous sheath of connective tissue) or remain with the epithelium.[4] Common examples of benign tumors include moles (nevi) and uterine fibroids (leiomyomas).
Although benign tumors will not metastasize or locally invade tissues, some types may still produce negative health effects. The growth of benign tumors produce a “mass effect” that can compress tissues and may cause nerve damage, reduction of blood to an area of the body (ischaemia), tissue death (necrosis) and organ damage. The mass effect of tumors are more prominent if the tumor is within an enclosed space such as the cranium, respiratory tract, sinus or inside bones.”
http://en.wikipedia.org/wiki/Benign_tumor
They typically grow slow – thank goodness – but as noted above – they can compress the tissues around it. It’s all about location. We have a saying in the group – location – location – location. The brain is an interesting place and it depends on where it’s located as to what symptoms may be noted. Size and location are important.
When patients report symptoms we are often dismissed that what we are feeling could not possibly be related to having a meningioma. It’s too small they say to be causing symptoms. Guess what, I know how I feel when I step on even a grain of cat litter after I have just vacumed my floor. Or how a tag bugs the crap out of me, or how I have to take the smallest does of medication. I am that sensitive. Others with a meningioma say the same thing. They might not have ASD to complicate things, but none the less, if it’s not the tumor causing the symptoms, dizziness, headaches, blurred vision, etc., what is? It’s another case of being our own best advocates and not taking no for an answer. We end up again often being better educated than some of those who care for us.
Sorry – that was off topic 😉 Back to your regularly schedule program 🙂
“Yes! Me too…whenever I am desperate enough to ask for support- even in the autistic help aids- there is TONS of paper work and steps that my brain can’t get around…so to get the help- you need help and even then it is rare that it ACTUALLY helps.”
I hate paperwork!!! Let me rephrase that. My own filing and paperwork related to my practice as a health coach is one thing.
All other paperwork and I I feel the anxiety creep in. My brain seems to go into gibberish mode. I have to stop and think of things that in that moment elude me. What did they mean by that question? Did I answer it correctly. Did I understand what they were asking me? I don’t agree with the options for answering those questions. It’s none of the above. Scratch out those choices and write my own answer – all over the page – up the side of the column in the white space beside the question – under the question – oh!!! Just see attached – and I add on a page of my own typed notes (my hand writing would never do – if I were ever to test I’m sure that would come back as dysgraphia or something along those lines).
The paperwork is daunting and a pain in the backside! Was it not clear that EF was one of the reasons I was asking for help?
It’s one of the most difficult parts of having health challenges for me – and for my sister as well. Paperwork to explain what is wrong – why you want help – when it started – rate your symptoms – are you still in need of services – document how many times you have been to the doctor in the past year – and on and on. She has to do this regularly for her disability coverage. She has a brain tumor you idiots! Quit putting hoops out there for her to jump. I have to do the same thing with medical appointments and tests that are outside of the ‘norm’ based on the insurance company criteria. Really??? We’ve been approved for a few things over the past couple of years, to only later be told that the tests – expensive ones like MRI’s were not pre-approved so we are paying the bills because the insurance company rejected the claim.
It’s true, we are often the ones that end up educating our health care providers. I am deeply grateful that our insurance company paid for my ASD testing. I was so afraid that they wouldn’t and if that were the case I would still not know. Another reason to be as much of an advocate as I can. There are so many that want testing and can’t have it because of the cost. We need to change access to support services and make it available to everyone who wants and needs testing and services.
Ohhh, that evil, evil, vile, paperwork! That is precisely why I NEVER want to move again. Packing up everything and living in utter chaos is stressful but not so bad. The paperwork to cut off your current utilities, start new utilities, transfer current services, and have your credit take a beating because you dare have your power turned on at a new place? ACK! And I’m sure if you’re on government help, that’s another few months, you have to go through a month’s worth of appointments, paperwork, more paperwork because they don’t know what paperwork they want, you send that in, and then they finally make up their minds and ask for something totally different. Then repeat the process at your next case review.
I hearby decree paperwork is now to be a daily chore in our penal system. Every prisoner who has committed a crime must be badgered and harassed by daily paperwork. In tandem with having to turn it in by first using one of those automated phone menus that never understand what you’re saying. Maybe if some activist feels that is a cruel and inhumane punishment we can get rid of it entirely? 😉
“Able to live independently is NOT a proxy for quality of life.”
This is so true and what you’re describing is a perfect example of why living independently isn’t the end-all and be-all of adulthood.
TRUE TRUE TRUE!
Thank you both ❤
Reblogged this on Spectrum Perspectives and commented:
Very important read. It speaks so well to assumptions, expectations, and judgments – and how significantly a difference in perspective changes them, for better or for worse…
Thank you for the reblog 🙂
I feel this too. Honestly, if someone saw me out and about with my family or at certain appointments I look like the epitome of independent. It’s too funny actually because I often think if I did not marry young I would be willingly living with my parents or a trusted friend…I spent a year with my two best friends from high school before marriage but I could barely handle that and I was lucky my one friend missed home a lot and we drove an hour every few days to go home at night most weeks.
I also have become more interdependent with age. There are more things you are expected to do once you cross the 24 line…before then it was not legal for me to even rent a car without a parental consent (which was a pain already having three kiddos) but it made for convenient excuses…but anything after 24 and especially close to thirty the expectations go way up- you are supposed to just KNOW how to fill the tank with fuel, how to do your taxes, how to clean a computer without damaging it, how to clean an entire house and manage the budget, how to procure insurances and legal papers at the proper times and how to drive in the city to get to medical appointments. My list could go on and on.
I often get comments on how capable I am…which I find amusing because if they only knew what it takes for me to get some things done. I need the privacy of my own home to have tears of frustration, reading online resources about whatever it is I need to do, go over it with a friend and my husband…and if I really can’t do it- delegating or avoiding or getting sick… I have a lot of coping mechanisms but really, if someone scrutinized my life they would see the multitude of support I get but in a way I can control. I keep my kids at home so I don’t have to be with other people and I am good at homeschooling them- and it really helps them but its way easier for me to do that instead of dealing with teachers, principles, other kids and other parents. My extended family lives two blocks away…my parents, my sister and my grandparents who are in their late sixties ( they started a family in their teens and we have all married young with has been a built in support too) and they are all only a phone call away. My best friend lives even closer and we talk every day for a couple hours – its like my personal therapy- about fears, anxieties, things to do…she is an NT but finds me fascinating…so she helps me with practical things ( like suggestions for what my kids should wear for certain events) and I enrich her life with my unusual brain:)
My husband has a job that allows him to take off whenever i have a medical appointment I can not drive to on my own. He is also near in case I have anything that needs taking care of. He comes home for lunch and supper and makes BOTH. I am in charge of the budget ( that took a lot to learn but now I am good at it) and a multitude of other tasks but even my grandpa tells my hubby every time he sees him that he should stop being the woman in my family and MAKE me do meals because he believes the woman should do that sort of stuff. I live in a conservative town and that is the prevailing belief…very old fashioned which makes it worse because I defy gender roles. And my husband is a burly carpenter yet he likes some of the homemaking tasks.
The funny thing is though- I have the MOST independent spirit. I need to be alone a lot. I need to have tons of space even from the people who help me and I need to process things on my own. We are very much alone in the unusual way we live and even my extended family does not get me. Only my husband and best friend understand me…and my kids. My parents have NO IDEA of how much it takes me to get through most normal days…they don’t understand me but its nice to know they are a phone call away if I am having a bad day. I rarely call them but knowing they are there makes a difference. When I had young kids we practically lived at my parents and grandparents and were fed, nurtured and allowed to be young…now that has changed but my life is a sequence of different people at different times supporting some external needs. My inner life is all my own and does not need much support…
I dunno. this is a complicated subject. I could write a lot more on it but my brain can’t get out the words I am wanting today:)
It is so complicated and you should see how much stuff I deleted from this post in the process of writing it. Even now that I’ve posted I still don’t feel like I have a lot of answers.
I think you hit on something important in talking about the expectations of others and what is perceived as socially acceptable. I mean, if your husband enjoys cooking or at least doesn’t mind (mine is the same!) then why is it anyone’s business who is making the meals in your house? That’s just . . . . unnecessary, and yet it creeps in and causes doubts or we’re forced to confront it when others bring it up.
And as someone who married young and went directly from living with parents to living with spouse, I have no idea what the other option would have been for me. Although I have to say that having a baby at 19 forces you to learn some stuff pretty damn fast. 😀
Yes it does! It was hard but in a way I am glad it threw me into it with enough motivation. When you love your baby you have more motivation to do the tough stuff. And the lessons are invaluable…but hard. It was really hard- those early years- but they are paying off now:)
I know, cultural expectations also play a huge part in concepts of independence…gender roles, division of labour, age…it all factors in. Just when I think I have acceptance for myself and for our journey another person questions it or I get triggered and doubt all over again. Sigh. I am glad you wrote this though because it is nice to not be alone:)
I guess a way, being a young mom has the advantage of being really energetic. If nothing else, we had that on our side. 🙂 And yes, there were things I did/learned to do for my daughter that I wouldn’t have been motivated to do otherwise.
I’m wondering if the young mom things was another of those reasons that I managed to adapt as well as I have. I left home, pregnant (at 15), and got married soon after I turned 16. My oldest (with my first husband) was born a couple of months later. She was an amazing blessing in my life, and I was not without my challenges trying to do all of the right things that make someone a mother. I probable had a little bit of a head start growing up as the oldest in a dysfunctional home and taking on the mom role in many ways, but still not the same as getting up when your little one has colic, or feeling the kind of fear that comes from your baby running a temp so high that she has to be admitted to the hospital. That was terrifying. I was a young mom trying to earn money so I took a babysitting job for a family that had a couple of little ones. They turned out to be very sick with colds and my daughter caught their cold. As a preemie (a month early) her immune system was not up to fighting that stinky bug and it lead to pneumonia-bronchitis. Talk about motivation to be better and know more about being a mom. Thank goodness she came through it and is today carrying our first grandchild 🙂 ❤
The young motherhood perspective is an interesting one. I wasn’t quite as young as you guys, but at twenty-three I was the youngest mum that I knew. I took a lot of flack for being a mother at twenty-three so I can only imagine the crap you would have to take from society as a teen-aged mother. But I didn’t fit in with the young mums either as I was five years older than them and married and the older mums tended to be fifteen or so years my senior and regarded me as an adorable but weird anomaly so I usually retreated after eventually getting the feeling that they thought that my husband and I had done things the wrong way. It is possible that this is in part a demographic thing as Vancouver mothers tend to have their first children in their thirties where as the average first time mother in eastern Canada is much younger but now I see that much of my feeling of alienation came from my ASD and the fact that I was a different sort of mother from most mums regardless of age. I do think that being a younger mother teaches you a lot though. I think that I am a better person for it.
“But I didn’t fit in”
Yes, and that is it exactly. In reading your post I realized something that I’d struggled with for a long time, and up to this point, at least consciously anyway, I had written of not fitting in or feeling like I could create a friendship with other women or mom’s as being linked to a conversation we might have about our babes and how old we were etc. While being a young mother and dealing with all of those stereotypes was a thing for sure, what I realize now in this moment is that my discomfort and never feeling like I had anything in common with other women was the Aspie in me in.
In thinking about it, it might not have mattered if my peers (as in other mothers) were my same age or not. They could have been older, younger, or my same age. I did have a couple of friends that were young mom’s and I did not get them either. We had what might be called a friendship but I never understood they way they thought.
“I see that much of my feeling of alienation came from my ASD and the fact that I was a different sort of mother from most mums regardless of age.”
Exactly! Hindsight is 20/20.
My kids are twelve and eight now and after a decade of motherhood I’ve realized that as an aspie I face a set of challenges that most mothers, and certainly most neurotypical mothers, won’t understand. I have *two* children, but I can’t deal with them optimally when they are together. I do fine one on one but I have to change gears once I have to move on to helping, talking to, playing with the other child which makes my day feel fragmented and leaves me exhausted. We’ve realized that we need to put our older son into some kind of school (we home school) next year just so that his ADHD desire for MORE STIMULATION! can be met, and my younger aspie son and I can function together in a quieter environment. I’m starting to see this as an accommodation instead of a failure and also appreciate that it is what he wants too. He is an adventurer, not a homebody aspie and we have found a school that fits with our philosophies so I have my fingers crossed. He’s stoked about the intramural unicycle basketball team as he is already quite adept at the unicycle. But I don’t think that most mums would understand feeling that talking to both children at the same time makes me crazy.
“In thinking about it, it might not have mattered if my peers (as in other mothers) were my same age or not.”
Yes! I always attributed the differences to most of the women in my “mom peer group” being at least a few years older than me and some being a decade or more older. But now I see that it was much more.
I’ve just reblogged this on http://www.wisdomtara.com and tweeted it.
“I’m sharing the link to one of my favorite blogs here – Musings of an Aspie.
Today’s powerful post is on the nature of (In)Dependent
This topic via this new post today is very powerful and spot on. I’ve not commented yet but I will be. I’ve been thinking some of these same things of late as I thinking about getting older in general and being a newly diagnosed Aspie.”
Thank you for sharing! 🙂
Nelliepmoore,
Hi! This is Signlady.
Just wanted to see how you’re doing. I miss sharing with you & others.
Your blog site is not up at this time.
I was not sure if I should type my email address here – but I don’t do any sort of social media at all except email or texting.
Anyway – I hope you are well.
Happy New year (in 1 hour, 21minutes)
This subject is the one I probably think about most and I have little to add to this amazing conversation except – yes! and thank you!
As a writer about spectra, I am surprised how revelatory the idea of a continuum here is…
Love,
Today I had one of those spectacular EF fails where I’d thought “if this meeting finishes at four, I can get to this other meeting at four,” without remembering that the two meetings were at least an hour’s bus ride apart.
When I finally arrived at the second meeting, 90 minutes late and very frazzled, it was to discover that the meeting had been cancelled because they didn’t have enough people to make it quorate (for which, read: because I failed to turn up on time).
This is going to cause my colleague no end of trouble, and in her place I would have been livid; but when I walked through the door, she simply told me to sit down and then fed me chocolate. There was a whole bunch of things that we really needed to discuss and decide, but all she said was: “You don’t need to make any decisions or contribute anything, but are you ok just to listen to some stuff?”
This, of course, was exactly the response I needed, although I wouldn’t have had a clue I needed it, and I don’t know how she knew.
The point of this (probably quite tedious) story is that to all intents and purposes, I live independently and hold down a fairly “important” job, but in reality I can only do that because lots of people around me make all sorts of accommodations. This has happened all my life, but I’ve only recently come to realise it after acknowledging that I’m autistic. A few years ago, I would have said that my colleague was just being nice; now I guess I would say that she was supporting me, or offering accommodations, or facilitating workarounds, or something. But the action hasn’t changed, it’s just the way I choose to label or acknowledge it.
I often think I’ve become more dependent in the last couple of years, but actually I think I’m just better at accepting help (yay, clean plates!). At any rate, having people ensure that I don’t live in a total mess of disorganisation has actually helped take some of the pressure off me, so I’m now able to do things like load the dishwasher every night that I would have found impossible before. So maybe being dependent in some areas has allowed me greater independence in others.
Sorry, that’s quite a long and rambling comment, which could probably be summarised in the phrase “yeah, I agree.”
“Sorry, that’s quite a long and rambling comment, which could probably be summarised in the phrase “yeah, I agree.”
I’m glad that you diffident just do a short summary. So many important reminders would have been left out that had me nodding my head. It’s one of the things I love about this community. Light bulbs come on for me at the most amazing times. Thank you for sharing ❤
Urggh, my brain and spell check – the word should be “didn’t”
Yes but your comment was far more interesting than ‘yeah I agree’ 🙂
It’s great that you have a colleague who understands what you need. That reflects well on her, but also on you as you must either be a thoroughly decent person that people are happy to help, or very good at what you do and therefore merit helping (or probably both!)
I’m glad you shared the long version as well. If nothing else, perhaps some readers will learn an excellent new way of approaching a work colleague or a friend who’s had a rough day and needs some quiet support.
“My kids are twelve and eight now and after a decade of motherhood I’ve realized that as an aspie I face a set of challenges that most mothers, and certainly most neurotypical mothers, won’t understand. ”
I could not reply directly under your post. With my kids they were spaced out quite a bit. My first at 16 and then years later (second marriage – infertility) we had our son – almost ten years apart, and then our younger daughter, third child was born eight years later. I was pregnant before her birth but lost that baby to a tubal pregnancy.
If my babies had been born closer together I might have had that need to deal with them best one at a time too.
I did home school our youngest for a time but we both realized that she wanted peers and more than I could provide at home. It takes a lot of energy to home school, even when you love your kids and what your doing. More power to you for being able to do that for you kids as long as you have, and for being able to support your son in his need and desire to attend school outside of your home. Finding a school that supports your learning preferences can be challenge too. Been there done that as well. I love that image of him riding a unicycle. Very cool! Our youngest daughter nannied for a little boy who was attending circus camp (for fun) and there were kids doing all kinds of cool things like trapeze, trampoline, and riding unicycles.
Have fun and enjoy the special time with your younger son. They grow so fast! ❤
Thanks. I think my little guy is looking forward to some one on one time too, as his brother got a whole four years of it before he was born and, actually my older son does go to circus school 🙂 He’s an original, it’s mostly girls there but he doesn’t care much about that.
Circus school?! How cool is that!!! 🙂
And yay that you’ve found a solution to your son’s individual needs re schooling – it’s definitely not a failure, but not even (in my books) an accomodation – it’s just finding the best solution to one of life’s many challenges. An accomodation could have been continuing to home-school him because that would have avoided all the stress of finding a school…..
Thanks Liz 🙂 I like the way you put that.
“actually my older son does go to circus school”
Oh, that’s so cool! I know the young guy or daughter nannied loved it. There were a fair number of girls but that did not matter to him. On the whole both boys and girls – up through age 21 attend. I got to watch them perform one night and it was awesome! 🙂 I love being original!!!
http://www.circusjuventas.org/
I made some growls about that recently. I really hate that phrase “people with an ASD usually continue to need services and supports as they get older, but many are able to work successfully and live independently or within a supportive environment”. And what human does that apply to who has never needed a single service or supportive environment? I’m an accountant, I provide a service, and I have a LOT of people who need me so they don’t go to jail! Because failure to file your tax return can land you prison time, and almost none of them can do it themselves without needing outside help from SOMEbody, whether me or another professional. Some accountants even are hired to take over a person’s entire checkbook because that person is so terrible with money and they’d never keep the funds up for bills and necessities. There are fulfilling careers built on many aspects of the service industry from computer repair to nurses because nobody can handle every last aspect of their lives without needing outside help. There is more shame in not admitting you need help than there is properly managing your life so all your affairs are attended to properly.
AMEN!!!
Growling along with you. As addressed above, development of the entire human civilization is a story of increasing interdepence. We as Aspies may (or may not) need accommodation in some aspects of life that in the eyes of others makes us more (inter)dependent, according to some norm (defined by whom?). We may compensate for that, however, by bringing our (analytical, methodical, concentration, precision …) talents to bear. If given the chance! Many individual accounts here and elsewhere demonstrate that this is not wishful thinking but real opportunity. We (may need to) take – like everybody else – but as a group can give as well if there is sufficient willingness to accept the offer.
Indeed! Take stimming, in example. If you have an analytical Aspie that doesn’t mind coming into contact with people, imagine how very good they would be babysitting or in physical rehab! In nurseries, they’d rock those babies into a blissful stupor every time they needed a nap, and be quick to keep calm and address issues causing the baby to cry. In rehabs, the constant repetition would help people learn how to use their bodies again after accidents or surgeries, the problem solving would help figure out a better way if they needed something different, and I imagine a stimming Aspie would be in high demand at massage parlors or even just in their own private relationships. My husband certainly doesn’t argue when I take out my frustrations on his back.
And from personal experience, I was often hailed as the best worker because I didn’t call in sick when I was perfectly healthy, I would WORK instead of sit around complaining about boyfriends, and I always got to work on time! Much more than I can say for a lot of my past coworkers.
And that’s just small possibilities with avid stimmers. We do have our faults, yes, so do all people, but we have a great many talents that are good for so much more than just the projected buggy-fetchers at minimum-wage jobs. (Which, admittedly, is a lot of fun. Too bad we can’t make a career out of organizing shelves and stuff.)
I’d love to be a shelf-stacker – if only I thought they’d let me rearrange the shelves into a nice colour order! I mean, why have all like items in the same place? If they’re spread along the shelf customers have to actually look at everything on the shelf and therefore might be tempted to buy items that they’d not previously considered! (Or might forget that they’d already put one brand of something in their trolley and pick a second competing one as well!)
And I hate it when people don’t turn up or turn up and don’t work – I found it so mind-numbingly boring when I didn’t have enough to do.
Ashe: Never would have occurred to my stereotypical geek mindset! What a beautiful example how to put stimming to good use!
Liz: I am sooo much with you! 😀 Sometimes, when nobody is around in ‘my’ supermarket, I actually do remove and fold empty cardboxes, bring order into messy heaps of dairy products and the likes of it for a few minutes. Somebody *has* to do it, it looks so ‘wrong’!
Thankie! But I must admit it took me a while to think of the G-rated stimming applications. Being married has that effect on ya. 😉 I’m not much of a rocking stimmer, so my kid mostly got cuddled. I probably wouldn’t have thought of nurseries if another Aspie hadn’t commented on how her stimming really helped with her baby.
Geek Aspies are definitely pretty obvious, the technical and analytical abilities really shine through in their fields of interest. We pretty much wrote the book for standard nerd behaviour and it was probably a bit of a shock to the Big Bang Theory writers to have so many of us identify with Sheldon. (I’m assuming, I’ve only read how he didn’t explicitly mean to create a classic Aspie.)
And of course any OCD comes in hand with keeping a place tidy, secretarial work keeping the boss’s agenda spic and span, accountanting (my day job), and the list goes on. Depending on sensory issues, I imagine some would do great with cleaning, yard work, and any home or office related design indoors and outdoors.
I really wish those Aspie Guide books would spend as much time detailing the potential usefulness of our oddball quirks as much as they do going on about how we’re oversensitive and a burden. Not everything is an absolute weakness. Take for example the woman born with hands, but not arms. Her hands were attached directly to her shoulders. That should knock her out of pretty much everything, no? She had a special keyboard made, mounted each half on a little shelf to either side of her cubicle, and she makes a living as a data-entry specialist. She still has a lady do her hair for her, but she’s not incapable of holding a normal job and does well at it! And some without upper appendages entirely work wonders with their feet.
My complaint was having the same item in multiple spots throughout the store. I have fits trying to find soap for my kid sometimes because there’s some in the baby section, in the normal soap section, and the makeup section. The first two I can see, but with the makeup??
And same here. I don’t want too little to do and I don’t want to be slammed. Just a nice, steady work flow.
… the comments here are stunning … miss Nellie, I was very moved by the many accommodations you made for your Mother-in-law.
Kmarie, I can not tell you how descriptive your paper-work work is of me. I loathe having to fill out endless reams of paperwork AND produce back-up justifiable paperwork …
I have always been extremely independent from a toddler. My parents and all authority figures in my life struggled with my independence.
I married and left home at 16 – moved over 600 miles from home. This was the era of phone booths. My husband deserted me several times in the first 3 years. I worked & saved money to buy a van & tour the US. My plan was to live in the van & travel from town to town working various jobs enjoying each city along the way. I never asked anyone for anything or thought of going back home.
But after nearly 3 years, I got pregnant during a reunion with my husband and we moved back to our hometown where he deserted me AND a child. I used government assistance & worked part time until my child started first grade, then I worked in a sign shop for two years. Then I became a self-employeed sign painter.
Because the father never paid child support, my parents helped me a lot financially – and I worked & worked until we got off food-stamps & housing allotment.
I think my parents were proud of me in spite of all those crazy years prior to becoming a mom. Becoming a mom made me really accept responsibility in a different way … looking back at those years now, understanding Aspergers, I can see where a lot of weird things happened for good & for bad … I was a very dogged perfectionist & had an extremely rigid work-ethic.
Then I married again & had another child whose father turned out to be unproductive & unsupportive …
Also, my parents were getting older & could not babysit as much – they helped me a lot financially – but I hated it bc I had made these poir choices & it was not their responsibility to support me.
In the end I took care of my dad for 3 years after my mom died in 2000. He was very independent, but I spent a lot of time with him before he passed n 2003.
Since then, life became more difficult bc I realized how dependent I was on.them, not just financially, but as loving parental models to my kids – they died before my youngest was 8. The older daughter had the most time in their love & care.
Now my youngest is 20.
For the past 12 years I have been reallt struggling financially … a few friends have given me monetary help here and there – & i finally took a part time job …
I dont even own a credit card & my home is paid for but needs a TON of work. I have no savings. When my truck needs work, my mechanics let me pay on ‘time’ bc they know I WILL pay off the bill even if it takes 3 months.
Im not sure how sustainable anything is anymore but I believe I would rather die than go thru any length of paperwork to get food stamps or any kind of ‘aide’.
If SS is still there when Im 65 I have paid in enough to draw that.
Meanwhile, I handle all the details of various & varied sign.jobs, and I clean my own house & do my own yard work, and schedule vehicle maintenance and etc etc etc etc & it has always been extremely overwhelming … I get a mental image of a person spinning plates on sticks, chewing gum, while balancing on a ball … then the wind blows & a rainstorm begins … it rains thick glue until I am forced to stop all activity.
I go into depressions where I am immobilized because there is just too much to deal with.
I find that this glue-bound existance forces me to finally emerge to deal with only whats MOST important – by that time it is still several things – but they sort of seem to line up better instead of all jumping & screaming at me at one time.
Sometimes, if I am in a terrible financial place, I will ask a friend to hold a check for a 100 or 200 til I can generate some income.
In logic, this is unsustainable. But I dont know what else to do but keep working.
My mind plays these sayings over & over …;
You cannot become dependent on others for everything, or anything.
Some people are totally undependable.
It is unrealistic, unreasonable, illogical, and foolish to expect others to always be bailing you out. Dont take advantage of others, or take others for granted. Be VERY cautious who you accept help from bc there are usually ‘strings’ attached. If in any doubt, decline any help.
Figure it out.
You made your bed, now lie in it.
You are responsible for your own actions & decisions.
Circumstances happen to everyone.
You should always be aware of the worst possibilities, and be prepared to deal with them.
Some of these things I see my dad telling me and some of these things I figured out as I went along thru life being deserted by a husband as a teen, hitchhiking around, being alone almost all my life, being deserted with a child, etc.
Since I was born it seems, I have always been disinclined to be dependent on any one too much bc people can become unable or undependable for all kinds of reasons – then what will you do?? Best to be self-sufficient and unassuming.
It requires a lot of thinking, but you keep your survival skills honed mostly.
“… the comments here are stunning …”
Aww, thank you. It was a big stretch but it was one of the best things I ever did, besides being a mom. As hard as it was to turn our home upside down and then right it again, I know that we gave her a quality of life that she did not have at home. She was confusing day and night, not eating, incontinent, and to our deep anger, we discovered that people were taking advantage of her good heart and coming into her home to use the phone for long distance calls (she did not have long distance so that was an expense for her) and she was giving things away when people would ask for them. She had a very good heart and even her diminishing memory did not realize she was being taken advantage of.
Her being was caused me to stretch and grow, as well as my husband and our kids, who at the time ranged from late 20’s to about 11. Our youngest used to do her nails for her and she loved it. It was like taking Frannie out for a day at the salon only she did not have to go out into the cold. She loved having nail polish on and our daughter got a kick out of it. Things like that, service to someone else, taught all of our kids something precious. They also got to know their grandma more than they had before. We had family game nights and grandma was included. Playing Pictionary with Frannie as an absolute hoot!!! I remember once that she was trying to draw her clue and no one was getting it and finally in exasperation – she drew her leg out from under her bathrobe and toss it across the table and said, “Gam’s, can you see it now!!!” She was laughing as hard as we were. For those that are younger, Gams was a name used when referring to a women’s legs, back in the 20,s and 30’s. Often used by men to say, “look at those gams!!!”.
It can be a real gift to help someone else with their independence as it was for us. Living with your son and his family might not look like independence to some, but it was. The alternative was a nursing home, her funds drained to pay for it, told what to eat and when, no smoking for sure, away from her family, and a host of other things. It’s all a matter of perspective. ❤
Reposted my comment on http://wisdomtara.com/2015/01/07/independent/#comment-9 ❤
I’ve thought about this too, at first in relation to my child and then in relation to myself. Like many American couples, when we first had kids my husband and I used to make a lot of comments and jokes and such about “when the kids leave the house” which of course we’d decided had to be practically the moment they turned 18. “They’d better not be living on the couch in the basement in 20 years” hahaha blah blah blah.
Then when we realized one of the kids might be autistic I began to rethink this concept of them moving out of the house as soon as they reached chronological adulthood, and if that might not be realistic… I found that I was NOT actually as worried/upset about the idea as I might have expected. What, really, would be the tragedy in living as a family of three (or four, if our other one stayed for whatever reason) for the rest of our lives, or some portion of our lives? I love my children. I’m not in a race to get them out of my house and my care.
Lately, as I’ve realized I myself might be autistic, I have been crashing into brick walls of my own. As you’ve described here, getting in touch with my own autistic self has made me more aware of my autistic traits, more likely to express them freely, and sometimes also feeling the limits of my abilities more keenly. My husband has been amazingly adept and willing when it comes to stepping in to relieve me of tasks I can’t handle. And while we’ve always divided labor in the home, I increasingly get these little glimpses of myself as dependent on him to do things that – it’s not that I simply don’t like doing them, as I once thought, it’s that they are incredibly taxing or maybe not possible for me to take on. I feel a strange mix of gratitude, a kind of excited relief that he accepts me as I am, and also a little bit of guilt.
It seems to me a chicken-or-egg question of whether our culture devalues children because they are dependent, or dependence because it is childlike, but those attitudes feel very intertwined to me. So much of mainstream childrearing is about “getting them to do” everything themselves, pushing them to pull their own weight in the world, as if they owe US something for the privilege of being alive. Taking care of them is imbued with teaching and shaping and molding their behavior, rather than simply caring for and nurturing them because we love them. (For autistic children it’s even worse, because they are seen as “behind” even their burdensome, dependent, typical peers!) I try to remember that having people in my life who need my care is a gift. I love them and want them to be happy. I know my husband feels that way about caring for me, so my guilt is misplaced.
“It seems to me a chicken-or-egg question of whether our culture devalues children because they are dependent, or dependence because it is childlike, but those attitudes feel very intertwined to me.”
This is such a great point! I suppose some of each or perhaps it a vicious circle.
Out of the house at 18 is, I think, a fiction. Even when kids are out of the house, at college or living on their own, they’re often financially dependent on their parents for years. It’s more of a gradual weaning than a shove out of the nest for most of us it seems.
“Out of the house at 18 is, I think, a fiction.”
It’s a fiction for sure and we are okay with that. ASD aside, after the housing bubble crash the work force has not recovered. Kids graduating college are paying off huge college debt, and often not even finding a fulltime paying job in the field they studied in.
Our son graduated with a four year degree and all of that college debt and after college came back to live with us while paying off student debt. Add to that a car payment, forget about rent with a part time job and you get the picture. Our home is big enough that he has his own space on the lower level – like a mini apartment and that works for him. He’s looking for a full time job and that’s all you can do. We are glad that we can do this for him, and would do it for any of our kids, and have.
Some don’t have that choice. I got out from home at 16 (wishing it had been earlier), and I had no parental support whatsoever. On the contrary, my mother often kept my government support money for the most ridiculous reasons – money FOR me, when she spent zero money ON me. I stopped counting how much she owes me. I won’t ever get it back, anywy.
And if I look around on certain forums, there are tons ob abused Aspies out there, who also have to live without parental support and often with said parents actively sabotaging them every step of the way – or, worse, still stuck with their abusive parents.
Learning when to be independent and when to allow yourself to depend on someone is so hard when socializing is already cryptic.
“Some don’t have that choice.”
Trigger Warning . . .
I hear you. I’m sorry you went through that. 😦
Abuse was one of the reasons that I left home at 16. Had my home not been abusive I don’t think I would have been out in the world and dating and making the choices I did. I love my kids, and regret nothing, and, it might have been different had the home I grew up in been a safe and loving place. Verbal, emotional, physical and sexual abuse were a part of my growing up years. In particular the early years, before age 10 or so.
I’m sure that’s another reason that I am as street savy as I am. I learned things because I had to. Including Independence. There are still areas where I know that I struggle when I have been on my own. After a divorce and living in California with our youngest daughter. It was difficult trying to figure out the system while being a single parent. I bow and applaud to all of the parents who have done it, and managed to do it well. I did it well, and it was hard. I’m grateful for the support of my husband, even on those days when I want to slap him with wet spaghetti for something he has said or done or not done. He is still part of the roots of my tree in the world and I love him for it.
Here’s to our strength, in all of the ways that it supports us in good and caring ways. ❤
Yes, you pick up a lot of things on the way, not necessarily everything though – I am still in the process of learning, I am not sure I will ever stop learning, but trial and error is exhausting indeed. The internet helps, but can’t tell you everything.
There is so much people from loving, non-dysfunctional families simply pick up by osmosis, and how hard asking for help and/or instruction can be I don’t have to tell anyone here. People with the deeprooted feeling of being a burden (like a lot of abused children)
I won’t ever forget someone once being incredibly grateful I explained how to boil pasta without any judgement in an instruction post.
Oh, that was a click on “post” too early.
People with the deeprooted feeling of being a burden (like a lot of abused children) often have an even harder time with it is what I meant to write.
“I won’t ever forget someone once being incredibly grateful I explained how to boil pasta without any judgement in an instruction post.”
Aww, that made my day! What a precious gift to both give and receive.
Yes, I did feel like a burden a lot and that somehow the abuse was my fault. It has made it more challenging, that feeling of burden to others – having any needs or wants, on the other hand, I’ve felt that way for my whole life and it is only in the past decade that I have really understood that I took that on as a child – as many abused children do – a perception of reality that if I had been or done something different it would not have happened. In reality of course, the abuse had nothing to do with me or anything I did and it was most certainly not my fault.
… Im very sad to hear of those here who left home early due to abuse …
I’ve read a lot about child abuse, and domestic violence.
Here is an interesting true story a woman told me:
When she was a child, her father drank & beat up her mom (& the kids too) (& the mom was harsh to the kids too- common for the abused spouse to transfer abuse (trying to feel some control) The woman told me they never had any ‘nice’ things – everything got broken. Finally, when she was nearly 15, she got to go spend the night with a friend. This girls house was very nice. She noticed the mother had a nice, glass shelving unit full of porcelin figurines, etc.
The woman told me, ‘I thought they must have another room they fight in.’
After she spent some time there, she suddenly realized, not every daddy comes home drunk, not every mom & dad fight & wreck the house! It was the first time in her entire l5 years of life she realized this.
SO ILLUSTRIATIVE!!!
There is so much LEARNED behavior & mindsets.
This woman grew up to marry an abusive man, and when they divorced, she moved in with an alcoholic man who is also abusive to her.
Tho she does hate it, she can not change her comfort level to accept a loving, gentleman. She does not ‘get it’ that she is perpetrating her own ‘comfort’ level.
Well, anyway….
I was very fortunate to have had really wonderful parents who adopted me – tho they were older parents… and I realize, more & more, simply had no clue how to deal with me. I left home at 16 bc I just didnt fit anywhere – I DID have several questions about adoption, but in writing my memoirs and recalling all the many times I was so ill-fitting & awkward in everyday situations … I realized I left home bc of simply not fitting.
Somehow, I knew I would always be alone a lot. I got married to leave home, but the former boyfriend I married had already disappeared for 10 mo’s with no contact. I think I married him to have a 625 mile ride … lol
I dont know how ‘independent’ that is. He was certainly never dependable.
My parents were VERY hard working, dependable people (born in the 20’s)
I learned an awful lot from them.
I can not fault them for squelching me continously. They just could’nt control me in anyway from a toddler and older. I was very uncooperative, a loner, extremely creative, & did not work well with others, etc …
Aspergers was not heard of in the 60’s & 70’s.. But I do recall my mom getting angry with certain Drs when I was in elementary school.
As for my daughters, they are both pretty independent, as I have apparently, modeled for them an extremely independent lifestyle with repeated undependable husbands.
This may or may not be unfortunate.
I have been told I ‘need a husband’.
Did that woman I told you about ‘need’ a husband?? I would say definitely not, at least not until she could relearn to accept & feel comfortable in an abuse-free atmosphere.
There is a lot to be said for being alone. It is very educational.Everyone should do it for a while BEFORE the marry bc you get to know YOURSELF.
And so funny, I could mostly define my thinking before I discovered Aspergers. I pretty much knew me. But I never realized my thinking had a name. I had resigned myself to believing I was EXTREMELY unique –
different, etc – even certain other artists I knew were not ‘outside the box’ in the same ways I am … (tho, I have recently thought of two particular people whom I feel sure are on the spectrum)
I am very independent.
I am considering that it’s possible to be TOO independent.
I love this post because of all the long comments! I love to listen to people talk about how they live their lives.
My own story is rather short. After I was hospitalized for depression I had to fill out loads of paperwork to get financial help to pay the hospital, get insurance for my daughter an my self, pay rent, eat, etc. Of course, I was too depressed to go through that arduous process, not mention the EF issues. I had lots of ‘help’ – more like encouragement – from family, friends, community organizations, government offices and churches. The real help came from Children and Youth Services. They saw me as a resource to help my daughter rather than a problem. It made all the difference.
People, please don’t shy away from Child Welfare organizations because you are afraid they will take your children away. Their goal is to give families what they need to thrive and survive.
Nodding almost non-stop to the thoughts and definitions for describing (in)dependence that never had occurred to me. Of learning and reflection a place this is. Some snippets contribute I may?
1 – Financial versus emotional independence – My father died before I was twenty. Although no necessary consequence it motivated me to become financially independent within a year. I worked twenty hours a week as private teacher for Math, English, Latin, Chemistry (one-on-one situation!) while studying full time. By classical definition I was an independent young adult. Emotionally, I never grew up. It was easy to take advantage of me even until a few years ago. Friends would have helped by listening to their advice. If I would have had any 🙂 Independent and disabled.
2 – Price of independence – I continued to work 60, 70 hours a week for decades. Renovating the house, three kids through college, second car for the wife. Excellent workarounds to hide deficits in executive function. Independent and successful. Really? Or just using up energy I might have needed for later to *stay* independent? As you guess: full crash, psychiatric hospitals, nice dose of medication until today , psychiatrists (no proper diagnosis, of course), yada, yada.
3 – Independence rising? – Executive function or daily energy decrease with age. Maybe I learned the lesson? I have no large research group anymore. Instead working with two enthusiastic young students. We do fun, original experiments. A pitiful deep drop in the eyes of most colleagues, image of escaped lunatic included. Really? No more large conferences to attend (the meltdowns I had!), no need to talk to ‘important’ people, no pressure to write reports (horrible paperwork) every other month etc.
I work 30 hours a week. Less income does not matter: I stay mostly at home, shopping only if necessary, vacation in the woods 100 miles away. So … more independent nowadays, I guess, by my categories.
Sorry if point 2 and 3 sound too classical, like many NT biographies. Try to see it through an autistic lens. I am aware I was lucky, privileged, less discriminated than others from the outside. In fact I am a survivor, it was a close call. I do not fall for the trap of ‘Had I known earlier than just a year ago… ‘, it’s fine. See? I managed to apologize again like always. 😀
Okay, fooey!!! Can someone please help. I’m trying to compose a note to some colleagues about my diagnosis and I want to communicate as clearly as I can. I can not, for love nor money, think of the what it’s called when you explain to much. Example: My child asks me why that flower is blue and instead of saying something simple like that kind of flower is usually blue and isn’t it pretty, I go into a detailed lecture on plant DNA. There is a name for explaining to much when you are an Aspie (whether it’s in verbal or written form) and what it’s called is totally gone from my head at the moment. I’ve been trying to think of it for a couple of days now and it won’t come. I’ve tried Googling and no go. Thank you ❤
Verbose might work. Or loquacious. I’m sure there’s a miles better word or phrase but I can’t remember what. I even checked my diagnosis report as the subject came up there (!) but unfortunately the psychologist wasn’t into using good words!! If it comes to me I’ll write it down…
I just looked at my copy of ‘Nerdy, Shy, and Socially Inappropriate’ for this because I was sure that Cynthia had described it in there…. She sees it as a subset of perseveration and calls it “infodumping” or “monologuing.” 🙂
Oh, thank you Liz and theeisforerin! I knew there had to be a good term for this. All of those work and I was looking for specifics. I did not think of looking in my copy of ‘Nerdy, Shy, and Socially Inappropriate’. I was tilting towards anxiety with this and new I would be better off reaching out for help! You guys are just want I needed! Thank you! Off to finish my note. ❤
… I always thought that was over-analysis. At least I’m told I over-analyze things …
You could also use ‘disertation’ or ‘diatribe’ … although dissertation is probably the more exact word bc once you add levels of detail people think.your trying to teach …
At any rate, I do the exact same thing.
Is it because you see in pictures?
When any subject comes up, I see everything I know about that subject from its earliest history to its completion … for example, if I need boards to build a sign frame, Im running a ‘film’ in my head of log trucks going to the woods to clear cut pines which are planted and raised for this purpose and I think of locations where pines are growing in various stages and I think of how they will be clear cut and go to the mill & get unloaded and planed out to 2×4 which is actually 1.75 inches x 3.5 inches and then I think of the wood grain and the annual rings and if its oak I really respect & appreciate that because it takes a long time to grow and is a good strong wood. I also see in great detail every step of how I will use the lumber thru to the finished product and while Im working on it, I go over other things that are made of that wood, and rehearse things Im going to make in the future all the while seeing in the background the same growth process of the lumber …
This is why people make comments like ‘you think too much – or say TMI!
Although, I think Im quite adept at extracting & adding mostly PERTINENT facts to a subject, and not EVERY bit of info I might have logged …
It has only been in the last year that I have fully … or mostly … mentally grasped the fact that most people do not think in pictures … I realized most people do not bring all the information to any given subject – and I always wondered WHY – bc while they are frustrated with ME adding facts, I’m frustrated with their lack of info.
Since this discovery, my mental images for this lack of brain use in some people is Patrick the Star just standing there void of thought drooling, and I also see an empty house with lights going out, and I see a very grey brain slowly deflating, and also a blue or black screen (‘crashed’ computer)
I think its interesting that I do not see ‘small’ or tiny brains. That is because I dont really think people are stupid at all – just really void … apparently.
I am extremely curious as to what IS in someone’s brain if they do not think in picture & word details …?!
This is interesting. Until coming here I’d always assumed that everyone had pictures in their brain when they thought of ‘stuff’ and I still struggle with the idea that they might not – I mean seriously if they don’t have these little mental pictures (or films) in their heads when they’re going through a topic then what do they have going on? It just sounds like they’re practically zombies and really rather dull. I’d hate not having all the fun in my brain. It’s the one bit of my body that I adore.
Sometimes I wish I could see into others’ brains just to check how different I really am…
I have both images and a marquee scroll. Sometimes the reason why I get tripped up on a verbal word is because it’s misspelled in my head and I want to know why.
Support sounds like something that many men need but few (especially neurotypical) men are willing to admit to, in the same way that males don’t like to admit that they cry or get ill or depressed.
WOW! So me…….thanks.
It’s taken me awhile to hone in on my strengths. I tend to focus too intensely on my weaknesses. For instance, I have a knack for remembering numbers and finding patterns in chaos (e.g. word searches). I can find computational errors quickly. I am creative, enjoy solving problems, and have an insatiable hunger for knowledge. In hindsight, I should have chosen a hard science for a major, like engineering or biology, or become an accountant or statistician. I’ve spent most of my life not knowing who I was, and so striving to be what I thought I was supposed to be. Every one of my resumes as a young adult said the same B.S.: “Multi-tasker”, “Good with people”, “Excellent time management skills”. I didn’t know myself at all; I just put down what I thought you were supposed to put down to get hired. I have plenty of strengths I could have written down on my resume, but my greatest weakness was in not recognizing them.
Perhaps if I had known myself better from a younger age, I would have made better decisions for myself. Maybe I could have led a life that didn’t lead me to depend on men, pursued a career path better suited for my talents.
In general, If you don’t have enough information, you can’t make an accurate assessment of a situation and make the best choice, and that includes choices concerning your own destiny.
@ shawndorn – I totally agree with you. With that knowledge I would have approached life differently. Maybe (probably) I’d still have the same sort of life that I do now (it suits me very well) but I might have got here more quickly, and without (initially, and for a long time) seeing it as some sort of a cop-out. There’s so much societal pressure to be ambitious, rich, successful and so on, and because I struggled to achieve those things (because I didn’t value them or really want them) I felt like a failure. It’s only now that I can take a step back and say ‘it’s my life and I’ll do what I want with it’. It’s very empowering knowing yourself well.
This is an excellent post. I am 28 years old recently diagnosed being on the autism spectrum. I live at home with parents and struggle to accept it the best thing for me. I have lived with roommates and on my own and hated it since it caused an increase in my depression and anxiety. I am otherwise pretty independent. I have a job and pay my own bills. But I seem to need the extra support I get at home. But that does not mean I am not independent.