Yours, Mine and Ours: autism, self-advocacy, and setting limits

I have been thinking about limits: the edges of ourselves… that place where we interface with the world. Our limits and where we set them are the control valves for our emotional, social, physical, cognitive, and sensory experience. These boundaries are the meeting place between ourselves, others, and the world around us, and they deserve our mindful attention.

I have been told I am patient with my child and with my students… that is because I use strategies to support them before I am at my limit. Let me explain…

As a parent I have often considered that with my own children it is important for me to set my limits, the place I draw the metaphorical line at a place different from, separate, and well before, my level of frustration. If the limits we convey to others are at the same place as the end of our level of tolerance, it follows then that when those limits are reached we will be at the end of our resources – or at our wit’s end.

I have shared this with other parents and I have conveyed this to educators as well – when I have had the opportunity to work with them on strategies for supporting and teaching positive behaviour either at home or in the classroom. Our limits for what we are willing or able to accept or tolerate need to be set at a level far before we meet our threshold for tolerance for frustration or losing it. If we want to positively support the behaviour of children – it follows, we need to be able to access our best skills in order to be effective.

So the other night I was conversing with the Fabulous Laura Nagle – and we ended up discussing limits. It went a little like this:

This got me thinking about my ideas on limits and our the need to set them well prior to our breaking point, from a slightly different angle. This is not just about effectively supporting children. More, it is about the needs of ourselves as adults, and there is a cognitive aspect to this that may seem pretty obvious on a certain level – and yet it may bear closer consideration for many of us. If we need to still have the skill in reserve to advocate for ourselves, others, or to better the situation… then we need to pay close attention to what we are telling ourselves and others about our limits.

I often find myself considering H with a forward-thinking eye, and planning for the skills I think he will need for a good quality of life as an adult. So many of the skills that I employ to navigate the social world have been learned intuitively and are stored and accessed rather effortlessly. This doesn’t mean that I am not sometimes awkward or uncomfortable, because I most definitely am, but I navigate these situations with a pretty natural ability to accurately read the social information I get from others.

H, and many others like him, navigate the social world using skills they have learned and built on a more intellectual level. His understanding of the social world is in many ways a cognitive skill – rather than an intuitive one. It follows then, that if he is upset or overwhelmed, then the skills and strategies that he has learned in order to make his way will be less accessible to him.  If this is the case, and I believe that it is, then I need to be supporting him in understanding and advocating for his own limits.

I ended up making a visual model to support this idea:

Then over the next few days I talked with a wonderful and supportive colleague – who shared with me that he had envisioned a cliff when we were discussing the concepts. So… because I love his idea and I love creating visuals… I made another:

And then… thinking of H, my lovely reluctant reader, I considered that this had far, far too many words (and stars), so:

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism, (2012)

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About Leah Kelley

Leah Kelley, MEd., Educator, Parent, Speaker, Social Justice Activist. Writes blog: 30 Days of Autism. Projects support social understanding & neurodiversity. Co producer of documentary: Vectors of Autism. Twitter: @leah_kelley Pinterest: http://pinterest.com/leahkelley13/ Facebook: https://www.facebook.com/pages/30-Days-of-Autism-Leah-Kelley/154311301315814
This entry was posted in Aspergers, Autism, Behaviour, Parent, Resiliency, Teacher, visual strategies, visual strategies and supports and tagged , , , , , , , , , , , , , , , , . Bookmark the permalink.

29 Responses to Yours, Mine and Ours: autism, self-advocacy, and setting limits

  1. Hi Leah
    You clever lady. I love your pictorial representations of limit setting. It reminds me very much of the book The Explosive Child: Dealing with Chronically Inflexible Children. The title is misleading in my opinion. It takes about vapor lock, when children that have difficulty setting these limits for themselves reach the meltdown stage. It claims that any intervention after the fact is fairly futile. Instead it talks about preempting this stage by reading the signs that children may be reaching their limit. It also encourages us not to expect children with social deficits to have these skills because that like any other skill they are developmental and cannot be assumed. If a child’s cognitive abilities is completely out of sync with their social abilities people get confused. It really is a great book. Have you read it?

  2. Zaiene says:

    I learn so much from you! I had never thought of things from this perspective before. It is applicable in so many ways (for myself as a teacher, for students, but also for other work or personal situations). Thank-you thank-you. :D

    • Leah Kelley says:

      Thank you Zaiene… I appreciate your comment and your encouragement. In all honesty it was a new and shifted perspective for me as well. I am pleased that it speaks to others… and… You are very, very welcome!!

      By the way, my images are in jpeg format so please feel free to copy the visual and post it somewhere for you or your students if you feel it would be useful :) Yay!

  3. You have done an excellent job of taking a concept that at first seems quite complex and then using visual strategies to simplify it and then simplify it again. Your most simple form is a great framework to teach individuals to take the initiative to manage their own lives and environments. Thank you!

    • Leah Kelley says:

      Thank you so much… I appreciate the feedback on the visuals and making the concepts accessible. I often find myself wondering about these kinds of things – and considering if I am just winding around too much in my own brain. Also, I am so in love with words that I sometimes have difficulty letting them go. I suppose that is evidenced in the evolution of my images.

      The perspective of someone else that these visual strategies are helpful encourages me to continue to let ideas rattle around in my head, and now and then shake them out and share them in a visual way :)

  4. AspieSide says:

    What an awesome visual representation! I will have to share with my son. Although he is getting much better at realizing when he is approaching that limit now. He used to try really hard to just ride it out until it was too late. The only comment is maybe the frazzled part before the abyss is more like a slippery slope because once there the aggravating things start to compound faster & it is hard to pull yourself back out of that portion. Just an observation based on how I feel and how it seems my son feels. Although honestly in the past he definitely just dropped off the abyss. So I guess as we learn to recognize how we are feeling we start to have that recognition that we are starting towards the edge. But seriously I love this & it really does convey the fact that the closer someone is to the limit the less they are able to use their self advocacy. That really is the key – self advocating before you get to that point. You are an awesome mom and teacher!

  5. Until I was diagnosed with AS, I just pushed and pushed and pushed myself, always trying to keep other people happy – obsessing, even, about keeping other people happy. It seems obvious now, that it lead to frequent meltdowns and breakdowns and a poor quality of life for everyone. This was hugely frustrating and upsetting, because it seemed that the harder I tried the more I failed. And I didn’t know why.

    My diagnosis told me why – it explained to me (gently) that I have limits, and I learned to recognise not just the meltdown line, but (as you so ably illustrate above) the I’m-getting-frazzled line too. Now I am able to manage myself, and the demands upon me, so much more effectively. I still push myself, but now take care to operate near the limits of “all resources available”, rather than near the meltdown line. When I slip into frazzled zone, I go and hide until I have recovered, and am safely back in the coping zone. Meltdowns are rare. I get more done. I push myself less, and do not fail at all.

    Your illustrations present a brilliant visualisation of all this! Thank you.

    • Leah Kelley says:

      Leigh… I very much appreciate your comment and feedback. One of the things I really appreciate about this blog is all the tremendous information and insight shared by adults on the spectrum. Listening to adults with autism/autistic adults informs my practice as an educator and increases my understanding of my son’s experience.
      Thank you for gifting others with your insight…

    • “The harder I tried, the more I failed.”

      Yes. That. Me, too.

  6. 1funmum says:

    Wow that was great Leah! I loved your charts too. I read an article geared towards teens in Autism Aspergers magazine that had a similar thought. It had some strategies for people to use to set limits and control behavior before the melt down. We have been trying this and it has worked we have seen big changes in our school year, with how we approach homework and so on. I don’t always have the magazine with me but I do have my phone. I will favorite this post I think, so I may use it later. I often have trouble explaining to others why we set limits. This will be my go to article. So thanks for writing this. Did you know your the only Canadian blogger who I have found writing on Autism. You are amazing and thanks for writing a great blog. I see a lot of blogs from other countries but this is the only Canadian one that’s informative that I have found.

  7. Leah Kelley says:

    I am so glad that you are my posts helpful. I very much appreciate your support and your kind comments. Just so you know: I create the visuals as a single image jpeg. Thus, there is no reason you couldn’t drag them to your desktop and then load them to your phone so you have the visuals as support for you and your child!

    I also have a fb page that you might find helpful: https://www.facebook.com/pages/30-Days-of-Autism-Leah-Kelley/154311301315814

    Hugs and thank you :)

  8. coyotetooth says:

    : ) you pictured my job perfectly! It is a talent of mine: knowing limits of others and extending those limits while maintaining calm.

  9. Cassie Zupke says:

    I love your pictorial discriptions of our limits! Excellent!

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  13. colinb897 says:

    Leah, I found your post and the comments on it intensely thought-provoking. I recognise the wisdom in what you and others have to say about limits. However I find that limits function differently for me, where that different way attaches to language, and does not lend itself to 2-D graphical representation. I tried, but was unable, to set this difference out in commenting; there was just too much complexity to express.
    Today I then read a piece by gareeth (http://gareeth.wordpress.com/author/gareeth/) which evokes what I was failing to articulate about limits.
    I think that what limits are for us when we engage with another who needs our support to meet their needs, is one thing. I think that what limits are for us when we need support to meet our needs, is something else.
    Graphical representation may serve in speaking to some aspects of how limits play out in providing needed support to others. Language may be the better medium for speaking to how limits play out when we require support if we are to meet our own needs.
    H’s needs are intrinsically autistic as well as involving accomodating of himself in what is societal and social. In meeting the former it is, I think, necessary to go to limits, and possible to go beyond them: where crushing failure is intrinsic to being autistic; where a crucial part of developing autistically involves learning across that failure, and developing through that failure. In a meltdown, or more specifically in the circumstance that looks behaviourally like a meltdown, crucial autistic feeling and thinking and growing can and should take place: maximum mobilisation is had in an emotion-tapping determination to transcend limits; and autistic persons have to learn to manage the intention in this. To see only loss of socially-orientated rational strategies, is perhaps to not see the autistic aspect of intention and striving, is perhaps to not pay attention to what learning a developing child must do if they are to make more of the opportunities inherent in autistic meltdown moments. What is rational socially/societally, and what is rational autistically, are not equivalent.
    Even when we look at the situation of supporting another person to meet their needs, the question of limits is not simple. My best outcomes with autistic students, are always had when I’m on the floor, crushed and defeated by something (usually tension with management), way past my limits, spent. Gareeth speaks of this much better than I could, when he reflects on his unfolding life around ideas of crisis and miracles-in-the-mundane and G-d.

    • Leah Kelley says:

      Thank you for your comments Colin, and for leaving the link to Gareeth’s beautiful post… I have recently been following as well. Gareeth says: “We could miss the miracle in there if we didn’t recognize that the deeds that sustain us against all odds may be dressed up as the totally mundane.”

      Colin, each time you share your perspective – I am pushed – perhaps more… nudged or led, toward another angle or way to consider my perspective – or another aspect to my son’s experience.

      It seems that my images convey the accessibility of strategies or resources available – and I would be inclined to agree that this is useful, in particular, for those working in a support capacity. I think, if I am understanding part of what you are saying – that this does not address the function or usefulness or the honouring of a meltdown, and also that a visual may fail to capture the depth that language can convey.

      I keep winding and unwinding and rewinding through all of this.
      I won’t pretend to fully understand – and I won’t try to pull together some kind of tidy summative conclusion – it is simply beyond my current understanding.

      I suspect I will be revisiting your comment (as often seems to be the case) – and will do so with appreciation for your insight and thoughtfulness. Thank you.

      • colinb897 says:

        “It seems that my images convey the accessibility of strategies or resources available – and I would be inclined to agree that this is useful, in particular, for those working in a support capacity. I think, if I am understanding part of what you are saying – that this does not address the function or usefulness or the honouring of a meltdown, and also that a visual may fail to capture the depth that language can convey.”

        Yes to all these points. I work in an educational setting which works to a strategy of remedial-socialising of autistically developing children. Strategies and resources of a particular order are made available and promoted. These would lend themselves to graphical representation. I’m accepted in this setting as the autistically-orientated member of staff. My primary concern is with students for whom the school’s provision is not working as well as it should. What the school perceives in terms of its socialising approach, I review in autistic terms; and I advocate for these students in these terms.
        I am led in this by the students. I pay close attention to what they say. I critically reflex on how I am hearing and evaluating what they are saying. I retrieve them and their activity from any deficit/impairment viewing of them. I model them as autistically intentional: using a presumed competence prism; that is I presume their intentionality mirrors my own, generically. I listen closely to what they have to say about what obstructs and subverts the self-expression and self-realisation manifested in their intention.
        I then do a what-if-I-were-them reflex, and articulate to myself what I would attempt and do if I were in their situation. I use the modelling in this to advocate for these students with my colleagues and management. I use this modelling to inform the educational scaffolding I provide these students. In doing this advocating and scaffolding, I come into tension with the operational project and process of the school: where I then see myself as subject to the genre of obstruction and subversion of which students complain; and I model this obstruction in terms of an autistic-social tension.
        In doing all this I get to potential meltdown points. In person-centred psychology (which I favour), there is a notion of containing, containing the emotions arising in a therapuetic relation and interaction. I see my job as containing the emotions involved in meltdown moments arising from an autistic-social tension. In so containing I tend to stay on the autistic side of a social-autistic tension. In that sense I am, as you say, looking to sense and conceptualise and theorise-about and talk-about the autistic functionality or potential-functionality of meltdown. I tap into my own contained experience of meltdown, to drive what I am and do: more generating energy from a controlled nuclear-fission sequence, than allowing such a sequence to produce an explosion; and I believe we should provide children exposed to meltdown, with the tools to likewise.
        We can look at this in terms of Karla. Karla reflexes on the world she has encountered, and she consequently intends that world’s comprehensive change, and to make it more accomodating of who and what is autistic. The gearing involved in this is phenomenal. The world to be changed is vast and complex, vast and complex beyond understanding almost. The world which prevails flexes every resource in which it consists, to oppose what Karla intends. That is the measure of the autistic-social tension. H and his autistic peers share Karla’s experience and her consequent intention, generically speaking. They do not necessarily have Karla’s tools. More complexly and cruelly, if and as they manifest self-forged autistic tools, they are likely to be sanctioned across social presumption. The frustration in this, echoing across autistic sensing and autistic cognition, is both intrinsic to being and developing autistically, and of an order that goes way beyond what is expressed in Munch’s “Scream” (a graphical representation). The wonder then, is the autistic specific resilience of autistic persons. They hold autistic course, they come back, they do the autistic thing again.
        Regards limits. Limits are an expression of identity. Identity is perhaps the key to being human. Autistic and social-grounded identity differ. They are synergistic and symbiotic; but they work across differing algorithms. To enter the universe of being of an autistic person, we have to be prepared to suspend any identity which involves algorithms which keep us outside that universe; and such change in employed algorithms alters our effective limits. What we require going forward, to see us better serve autistically developing children, is cultural resource which enables us to move more easily into and out of autistic and social universes. That movement involves identity shift and limit change. This may all sound very abstract, but it is something I see being done by the autistically developing children I support.
        These children partake of the social world to a striking degree. However there is then little reciprocation from a social side to things. Little effort from those on that social to enter an autistic universe of occurrence. Odd really, at a time when we are considering voyages to Mars, that we are culturally reluctant to resource voyages into the autistic. I like your term of honouring meltdowns.
        As an aside, I do understand that supporting autistically developing children in a school, differs from supporting these children within a family. Schools are organised so that someone would step in if any member of staff had no more to offer a child. Meltdown at school will differ from meltdown at home. In each case the meltdown would have to do with setting as well as child. I would argue that empathy with how and why a child meltsdown, can be had whenever we as supporters of that child experience meltdown. We and the child are there encountering situation related frustration so great, that we melt down. Individually and together we are being frustrated by a situation or circumstance being encountered. I think it can sometimes be good to refresh our sense of the grounding difficulty being grappled with.
        That grounding difficulty, and again a matter of autistic-social tension, is had in the encounter between: a social/normative/societal life-form which intends that everything should be processed across what is collective and collectivising; and an autistic life-form where all of that processing is being done across individuation and within one person. Again we can illustrate this by considering Karla. Karla’s autistic capacities allow her to come close to to realising this autistic pretension, of reviewing everything in which life consists within their own person. This is what the autistic is configured to do. Inevitably we only slowly learn our way into these capacities; and meltdowns are an expression of where our autistic attempts didn’t quite succeed. What the autistic person must then do, is carry out an examination of the wreckage of intention: to see what went wrong across autistic intention; and so as to carry through the drawing-board work for a next attempt. Meltdowns signal that such accident review is required. But, and across notions of autistic functionality, this exercise should not be appropriated to a strategy of socialising, or constrained by the standards of a socialising project.

  14. Leah Kelley says:

    Still processing… but thank you for this, Colin.

    • colinb897 says:

      You must have the processing/empathising constitution of an ox Leah.

      To offer a simplified schematic on this thinking. I’m presuming that meltdowns are inevitable (for H, for Karla, for me) because the autistic project of self-affirmation faces such challenge and obstruction across a contextualising social. Whether they play out as acting-out behaviour in a public domain, or rip through the private domain of a person like a stroke, or provide power through their being contained and run-down constructively; meltdowns remains meltdowns, generically speaking.
      Avoiding meltdowns, and everything that goes with them, has merit and yields dividends. However risk-aversion carries its own costs. Perhaps more crucially, it may be (and I think it so) that an autistically developing person cannot develop as an individual, unless and until they become able to pass through meltdowns, and perhaps routinely.
      I think the nub of things is how we manage meltdowns, how we pass through them, what we sift and mine from them.
      As a dyslexic/autistic person I’ve never had a fixed identity in the manner in which I sense socially-grounded persons may have identity. I’ve always only had identity as a processing-centre, and that within rather feral/cosmic horizons. I like and take part in the social, but I begin always outwith it, and I pass through it in a blink. When I’m confronted by others as to the person that makes me, I face a crisis. I’m never going to abandon who and what I find myself to autistically be, I love being that self; but I don’t want to lose social connection. In a first moment I cannot square that circle: and to square it I have to go through some sort of meltdown; have to liquidate all that I am, in order to then reformulate so as to see that circle squared. It’s taken me many decades to come to where I can do that reasonably well.
      If and when H has a meltdown, I would be looking to where he is struggling and learning how to square his life-demand circles, would be looking to how I might stream my life-wisdom into supporting his learning across meltdowns.
      What H can make use of, across intersubjectivity, is sense of how we work through meltdowns, sense of how we cope when pushed by life-demands beyond our limits. If we manage things so as to avoid meltdowns, then H may end unsupported in embracing and working through meltdowns he cannot and should not avoid.

      • Leah Kelley says:

        To start – I think you might laugh when I admit I had to look up your idiom – to find out if it was okay to have ‘the constitution of an ox’…

        This is such important understanding:
        “Avoiding meltdowns, and everything that goes with them, has merit and yields dividends. However risk-aversion carries its own costs. Perhaps more crucially, it may be (and I think it so) that an autistically developing person cannot develop as an individual, unless and until they become able to pass through meltdowns, and perhaps routinely.
        I think the nub of things is how we manage meltdowns, how we pass through them, what we sift and mine from them.”

        I might know a little of that feeling – the cleansing of a breakdown and the sense of a fresh start of the aftermath. I have felt that like the promise of a shaft of light breaking through after a storm… and the world feels washed clean and what remains of the rain-soaked world is transformed to sparkly beauty. This sounds schmalzy – but I do feel cleansed like that after a really hard cry and able to move on in a new way. I know this is not necessarily the same – but I am trying to understand through my own experience – so I have something to hang this on.

        I think what I am understanding, is that if we just see a meltdown as negative and undesirable behaviour that is to be avoided – then we may be disallowing the cleanse and processing that moves us beyond the trigger or the frustration. If it is only seen as an indication of unmet need – rather than a expression of intense experience – then we are denying experience and a very valid expression of autistic processing.

        If I take this further – I need to work to support H (and others) through this – so that he is honoured for his process, and is able to see himself as capable of navigating his way through the storm.

        Thank you for your patience as I work to parse this out… I want to understand.

  15. colinb897 says:

    Leah, yes to the aspect of washing and refreshing and cleaning of senses. Yes to a (self) expression of intense experience. Yes to expression of autistic processing. Yes to presuming comptence in H’s navigations during meltdowns. Yes, most strongly yes, to honouring him in his processing in meltdowns.
    We have to see meltdowns from a social point of view. We also have to see meltdowns as: the individual autistic experience of the collective human world not yet being arranged so as to allow for autistic inclusion; and the individual autistic impulse to make (autistically recognised) required changes happen.
    We honour Karla even when the backpressure of seeking to make the collective human world more autistically inclusive, proves momentarily too much. H is only a generation and a few steps behind Karla, and he is similarly worthy of honour when he too finds it momentarily too much.

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  17. PK says:

    Reblogged this on Walkin' on the edge and commented:
    Wow – so obvious, yet – not :)

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