Autism Positivity… and the motivation to reframe “tragedy”

I will begin with the words of my son, H: “I am not a tragedy and autism is a part of who I am. Mom – autism means I think differently… and that is a good thing. Isn’t it?!?”

I am participating in the Autism Positivity Flash Blog project because I believe in the importance of advocating for diversity, seeing children (and adults) from a strength-based perspective, and working to shape our society to be a better fit for those who experience the world differently.

I want my son to be empowered to be a self-advocate. I want him to have pride in who he is this very day. I want to be focused on his strengths and the positive things he brings to the table – or to a relationship, the science fair, or even the local Lego contest.  Some of those positives may be because he has autism – or not – really I have no need to delineate this.

I realize that autism is a part of what makes my child who he is, but that it does not paint a complete picture. He cannot be separated from being autistic – and I don’t want him to feel that he should, but neither does it completely define him. The thing is, however… the VERY IMPORTANT thing… is that I do not want him to feel shame! I do not want him to feel that he is less because he is differently wired – and I think that there is a real concern that this might be the case.

I see this young man work so hard to do the things that a typical child can do intuitively. I understand that this doesn’t mean that a typical child will not struggle, but that is not what this post is about. I also understand that there are some families who face enormous daily stresses and challenges with their children with autism/autistic children, and it is not my intention to diminish or underplay these challenges… but comparing children and their challenges is also not what this post is about.

The fact is that we all have challenges and strengths, and everyone feels better about themselves when they feel they are valued and appreciated for their strengths.

I am appreciative that H has language and is generally able to communicate his experience in an articulate manner. He is reading now – which is reflective of thousands of additional hours of intervention outside of school. He is demonstrating increasing skill in navigating the social world – although this remains a huge struggle and source of much anxiety. He is learning to use his cognitive skills to make his way and navigate a world that most of us, as not-autistic, can do rather intuitively, although perhaps not without a few bumps here and there.

H’s challenges may be different from a child without speech, or one who faces more severe cognitive issues… however his challenges are still very real and affect him deeply.

This is a child who can see what I refer to as ‘the gap.’ He can see that he is different, and at times he senses that he doesn’t quite fit in with his peers as well as others are able. He makes social and behavioural mis-steps – and social situations sometimes seem to go awry. From H’s perspective this can seem like things went sideways with no warning – completely out of the blue.

Sometimes he is lonely – desperate to belong – but stuck on the periphery. Sometimes he makes a good connection with a peer – but then a third child comes along and he loses his step – or cannot keep pace. Sometimes it is his own anxiety, fear, and worry that keep him on the outskirts.

I think my child is on a difficult path… and frankly – if there is a way that I can support the development of attitudes that accept and celebrate diversity in order to smooth his journey – then I feel that is my responsibility to do so.  Negative attitudes toward autistic pride are difficult for me to endure as a parent, but I can separate myself from this. As a parent I may understand the perspective that this might be someone’s gut-wrenching response to an almost untenable situation.

However, as many shadow traits as I may be observed to have – I am not autistic. Thus, I am removed by a degree. Conversely, my son is not removed, for him it is all too immediate, and he is not able to rationalize and understand these attitudes from a parent’s perspective. For him negativity about autism is an attack upon his very being -  in that very moment – and likely resonating on some level and carried with him into his future. This is as much of a threat to my child as the school yard bully and I want others to consider how it could manifest his sense of himself as autistic in a way that creates embarrassment, pain, and a sense of inevitable failure.

It is important for us to shift attitudes in order to lift the burden and heaviness that shame can cause – and I want to prevent that shame or potential shame from scarring my vulnerable child… or yours…

So if you will be patient with me as I wind my way through the writing of this post, I think I can weave together the many threads. Autism affects my child… it affects him deeply. But more than this – my response to him affects him as well. The responses, attitudes, and judgments of other children affect him, as do the responses of teachers, relatives, family friends, neighbours, and the attitudes and judgements of strangers.

I worry about the way that he was at times punished at school for his lack of social understanding and was given the message (even if perhaps it was only implied in the reaction of others) that he was bad. I worry about the lingering effects of that message on his development of a sense of self. I worry that my child may feel that he lacks worth – or that he is not good enough. I worry about the shame my child might feel, and I find myself observing H closely to try to measure and determine the depth of its effect.

I worry about the messages of the media proclaiming that autism is a curse, an epidemic, or a tragedy – and that my child hears and processes messages like these. I have to work hard to undermine the effects of this and loosen shame’s hold. This shame part really tears me down to my core… and sometimes I worry we do not have enough time – enough awareness – enough insight and understanding to mitigate the potential damage.

I want to live in a world that appreciates the strengths of a child like mine, or the sparkle of understanding in the eyes of a child who does not have language – but still communicates.

I want H to make a statement like I shared at the opening of this post and be able to leave off the questioning tone.

I want to surround my child with positive messages… about who already he is… without changing one little thing, and then move on from there… and I invite you to do the same.

_________________________________________________________

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 acceptance, Anxiety, Autism, Autism Positivity, Behaviour, diversity, Shame, The Gap, worry and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

37 Responses to Autism Positivity… and the motivation to reframe “tragedy”

  1. wonderful post. As a mom with a son with Aspergers, I hear you. Thank you for this.

  2. OMum22 says:

    You got into my head and wrote down what I think, giving it an H-focused twist of course. I love this Leah!

  3. Chris says:

    Great blog. Will follow with interest.

  4. Hi Leah,
    I was at the conference in Flagstaff you spoke at. Thanks so much for your inspiring words there, and here on your blog. I made a link from my blog to this post becouse it speaks truth for our family as well.
    “Sometimes he is lonely – desperate to belong – but stuck on the periphery. Sometimes he makes a good connection with a peer – but then a third child comes along and he loses his step – or cannot keep pace. Sometimes it is his own anxiety, fear, and worry that keep him on the outskirts.”
    This part really hit home for me.

    • Leah Kelley says:

      Thanks Teddy. I so appreciate your kind words. The NAzASA Conference was an amazing experience, and it is lovely to get feedback that my message and session were meaningful for you. I will have a look for your blog… or you can link it up here if you’d like.

  5. Marita says:

    Thinking differently is an amazing thing. I hope our kids will take pride in their differences if we take pride in them.

  6. I really enjoyed this post. I hope my son will have the same level of insight and see his autism as a strength, not a weakness. I hope one all ASD kids will not feel shame only pride.

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  15. I’m with you on this.

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  18. colinb897 says:

    Leah, great posts from you.
    You say: “However, as many shadow traits as I may be observed to have – I am not autistic. Thus, I am removed by a degree. Conversely, my son is not removed, for him it is all too immediate, and he is not able to rationalize and understand these attitudes from a parent’s perspective. For him negativity about autism is an attack upon his very being – in that very moment – and likely resonating on some level and carried with him into his future.”
    I’m minded, when you say “I am not autistic”, of how I felt as a child when hearing JFK’s “Ich bin ein Berliner” speech (http://www.youtube.com/watch?v=hH6nQhss4Yc), on TV. Even today that feeling still resonates in me. I am not and never was anti-Soviet, but I see and understand what identification with West Berlin meant for a non-Communist world, see and understand what this identifying meant for the citizens of West Berlin, in a complex historical and ideological circumstance.
    If H is sometimes in a situation akin to West Berlin, then we are in the situation of JFK. JFK could not say “Ich bin Berliner”, and was removed by that degree; but wasn’t it marvelous and meaningful and indicative of a hoped-for and eventually-realized future, that when he came to Berlin he found his way to this “Ich bin ein Berliner” frame of reference. In empathy with H we are all autistic, all active citizens-in-hope of an autistic-inclusive future. JFK communicated fear-dispelling hope to West Berlin’s citizens, and that resonating hope was carried into a realized future. We and H can do likewise.

    • Leah Kelley says:

      I am moved. Thank you for this – for this vision of what is possible in such an all embracing/inclusionist capacity.

      I think this refers to a comment you made a while back where you were talking about social and autistic experience and how those that are considered ‘high-functioning’ (ya – I do not like that term) have to sacrifice their natural autistic and authentic selves and subvert it to make their way as they are seen as successfully social. That the two presently exist with an opposing tension – and that the shift that needs to happen in terms of paradigms is yet to be conceptualized, but that it will be by those who are being nurtured and parented to be their authentic selves.

      I expect that I do not say this as eloquently as you – but – I am checking my understanding – so please adjust my trajectory if I am off track. I am open to the nudge and the stretching.

      However – if my understanding is correct – what also needs to happen for this to occur, is that it is social that needs to do some of the changing. (I would agree that it is time for that.) Instead of having the autistic self subjegated because of the ability to be successful in a social domain – we need to support the separation of these two things so that autistic expression is not seen as a fail and as somehow the antithesis of social. And then – when the two aspects – social and autistic – are seen to co-exist in tandem, rather than in opposition, we can work to reduce the tension between them within the individual. If I am understanding – that will increase the likelihood that individuals feel honoured in their autistic experiencing and response to the world – and when those of us who are non-autistic begin to understand this – we too may let go of some of our assumption that somehow social is better. Then – we can work to more authentically enter that place where we look deeply and see the perspective of another.

      With this acceptance and reframing, I can work to transport myself to understand H’s experience and understand with greater depth in a way that shows empathy to and solidarity with another human being. I can work to understand that experience – even though it is not mine.

      “In empathy with H we are all autistic, all active citizens-in-hope of an autistic-inclusive future. JFK communicated fear-dispelling hope to West Berlin’s citizens, and that resonating hope was carried into a realized future. We and H can do likewise.

      I love the hope and beauty of that… I believe in this and the possibility of this kind of acceptance and honouring.

      Colin… I appreciate you and your comments and that you take the time to connect to what I am thinking with your thoughts and insights. I hope that others take the time to read our dialogues – because they may find – like I do – that they open perspectives and shine a light in places that may otherwise go unseen.

      I am moved…

      • colinb897 says:

        “However – if my understanding is correct – what also needs to happen for this to occur, is that it is social that needs to do some of the changing. (I would agree that it is time for that.) Instead of having the autistic self subjegated because of the ability to be successful in a social domain – we need to support the separation of these two things so that autistic expression is not seen as a fail and as somehow the antithesis of social. And then – when the two aspects – social and autistic – are seen to co-exist in tandem, rather than in opposition, we can work to reduce the tension between them within the individual. If I am understanding – that will increase the likelihood that individuals feel honoured in their autistic experiencing and response to the world – and when those of us who are non-autistic begin to understand this – we too may let go of some of our assumption that somehow social is better. Then – we can work to more authentically enter that place where we look deeply and see the perspective of another.
        With this acceptance and reframing, I can work to transport myself to understand H’s experience and understand with greater depth in a way that shows empathy to and solidarity with another human being. I can work to understand that experience – even though it is not mine.”

        Exactly that Leah. How the autistic is received is the key to everything. We already have autistic voicing Mark 1 & 2 & so-on; albeit we need to do more to increase and amplify that voicing. What we now have to work on is how we receive that voicing. This is what you and Ariane and others are pretty much pioneering. That pioneering is a go-to and enter action, and what is required for that is that we address and change the selves intending to go-to and enter: then “we too may let go of some of our assumption that somehow social is better. Then – we can work to more authentically enter that place where we look deeply and see the perspective of another.” As we do this, and do this uniquely for each autistically developing individual, we free their developing from obstructing tension, and then as they develop across inclusive embrace, and only then, will we begin to see what it is to be autistic. The social is wonderful, the most wonderful human invention, the most wonderful of evolutionary achievements. The autistic is then the synergistic cousin of the social, its shadow (in the Laurens Van der Post sense), a reminder of origins and possibilities any social is often minded to forget.
        Thinking of the autistic as a “place” is useful. If the autistically developing person is in that place alone, then we perhaps identify them with that place, and perhaps that person might do too. I think that as things stand the autistic is often a space, because unnamed, because unshared. As that space becomes named (voiced and languaged) and shared, it becomes a place. As that place is more and more richly shared, life-events and more occur; the living had in that place is what we come to identify as the person living there, and they too may see themselves in that living rather than in the space or place that allows for that living.
        One thing we are currently doing, is tracking and mapping the movement from social space and place to autistic space and place: giving some indication to others about how to go-to and enter the autistic from a social starting point; and of course we see the social tribe powerfully entering the social. Once we get there, whether that be autistic entering of the social, or social entering of the autistic, then the fun and games of life begin.

  19. Amy says:

    This. Exactly. Thank you!!!!

  20. srsalas says:

    Neurologically speaking you may be removed by a degree, but it’s amazing what being a Mom does… it trumps a hell of a lot ;) You do not have to be autistic to be a better or more understanding parent to your autistic child, if that were the case, we would be in big trouble. Learning about, understanding, and accepting differences is the key. My Mom is not autistic, however, she is one of the most important, influential people of my young life. Before I had kids, before I learned 2 of them were autistic, and before I learned I was autistic, My Mom is the one who taught me about acceptance. And now, as you teach your son about acceptance, I feel confident that because of You, H’s words will one day be a statement.

  21. Leah Kelley says:

    Thank you so much. Your words moved me deeply. ((Hugs))

  22. Naomi Wilkey says:

    This was beautifully written, and has left me in tears. Thank you. This is exactly what I want for my son, and all ASD kids :)

  23. I don’t know how I missed this, Leah, and I’m so glad to have found it. You have articulated beautifully everything I feel. We can – all of us together – stretch people beyond their comfort zones, encourage them to open their hearts and arms – to make room for our children and for autistic people. It only takes one person in our child’s life to make them understand how wonderful they are. (That’s from Dr. Edward Hallowell’s book and a study he noted in his book.) But it also takes only one person in the other people’s lives to help them understand how wonderful our children are. Thank you for being that one person for so many.

    • Leah Kelley says:

      (((Brenda))) Thank you for your beautiful comment. I read it this morning and carried it’s spirit with me all day. I feel fortunate and grateful to be on this path with so many other people who are committed to supporting positive change.

      I will have to check out Dr. Hollowell’s book – but I am convinced that each of us can make a difference (I know you certainly do) and that our movements and stance resonate and can have an effect beyond what we can see ourselves.

      Thank you for reminding me of this…

  24. Leslie says:

    I was deeply touched by your most articulate post. It was as if you took all the feelings I have swirling inside me and made them clear. Thank you! I am on the same wavelength and strive every day to give my son the awareness that he’s wonderfully unique and I celebrate and encourage him to shine on.

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