I recently enjoyed a post over at Kim Womble's Countering, http://kwomblescountering.blospot.com/2011/06/review-of-film-fly-away.html. The comment by her son Bobby, about "the good kind of Autism" really struck me. I wondered where the differential point is between the 'good', and the other kind. As I said in a recent post, suffering is not part of the diagnostic criteria, yet it clearly is a common experience for all those with ASD no matter where they sit on the spectrum. Some will argue that the most severly impacted, non verbal, self harming Autists will endure the most pain, while others may suggest that a conscious awareness of difference despite some level of social functioning compounds a sense of disconnectedness and difference that feeds anxiety, depression and social isolation. All these are risk factors for suicide. And of course there's everything in between.
I have no intention of engaging in a 'whose got it worst' conversation. I see this as pointless and essentially invalidating. But I did want to share the following youtube clip in order to facilitate some discussion about how those who appear so lightly affected by their ASD still face hardships that few of us NT's can imagine.
http://www.youtube.com/watch?v=YNOeCAjxFyw
The reason I feel this clip is so important and powerful is it reflects the internalised self loathing that occurs when people have profound consciousness of their difference and rather than cut themselves some slack, buy into a damaging narrative about disability. This young man uses the term 'retard' in such a repetitive and natural way that it seems he has integrated the concept into his own self image. This breaks my heart to see.
It seems to me this is an additional challenge to those working to assist children and adults on the spectrum. Teaching not just functionality in terms of communication and socialisation but self care and kindness. This reinforces my view that pathologising narratives need to shift to accommodate a more optimistic view point. People with Autism would be well served to learn self soothing skills that go beyond anxiety related stimming, such as cognitive processes that ease stress and give the person a greater sense of control over inner turmoil. We teach NT people this through counselling processes using cognitive-behavioural strategies. Surely people such as this boy would benefit from the same? If we choose to focus only on the external behaviours but not ackowledge the internal emotional world of young people with an ASD then we leave them vulnerable to endless frustration and possible self hatred.
I have no intention of engaging in a 'whose got it worst' conversation. I see this as pointless and essentially invalidating. But I did want to share the following youtube clip in order to facilitate some discussion about how those who appear so lightly affected by their ASD still face hardships that few of us NT's can imagine.
http://www.youtube.com/watch?v=YNOeCAjxFyw
The reason I feel this clip is so important and powerful is it reflects the internalised self loathing that occurs when people have profound consciousness of their difference and rather than cut themselves some slack, buy into a damaging narrative about disability. This young man uses the term 'retard' in such a repetitive and natural way that it seems he has integrated the concept into his own self image. This breaks my heart to see.
It seems to me this is an additional challenge to those working to assist children and adults on the spectrum. Teaching not just functionality in terms of communication and socialisation but self care and kindness. This reinforces my view that pathologising narratives need to shift to accommodate a more optimistic view point. People with Autism would be well served to learn self soothing skills that go beyond anxiety related stimming, such as cognitive processes that ease stress and give the person a greater sense of control over inner turmoil. We teach NT people this through counselling processes using cognitive-behavioural strategies. Surely people such as this boy would benefit from the same? If we choose to focus only on the external behaviours but not ackowledge the internal emotional world of young people with an ASD then we leave them vulnerable to endless frustration and possible self hatred.
Thank you for the mention and link. You make such good points.
ReplyDeleteFor us, parenting Bobby was about making sure he wasn't hurt psychologically by his disability; that meant looking at the educational setting and being actively there in the school to see what was going on, and to pull him and homeschool him when his differences were noticeable to the other kids. We got him out of there before he could be hurt. In a supportive home environment where his positives were always showcased and his disabilities could be addressed matter-of-factly with no overtones of judgment or sense that he was somehow less than, I think that helped to keep him happy about himself and who he is. When we honor the person in his or her entirety, then we let him also honor himself. He has no reason to think he's less than anyone else because he's not.
I think if I had to attach a specific definition to what I mean by acceptance that would be it in a nutshell. We can reduce other's suffering by making society more accepting.
Teaching specific adaptive coping tools is so important. We're going to hit snags and our children need to know how to deal with adversity while still maintaining a positive, accepting self-image.
Excellent post, Sharon. The internalized negative tropes have been one of my biggest challenges. For me, they've been much more of a struggle than actually adapting to my disability. I tend to be careful of what I read in the autism community, because so much of it is so pejorative. In the past, it has engendered depression, anxiety, and poor self-image. Who needs it?
ReplyDeleteStarting to read widely in the field of disability rights was a huge help. I began to see all the internalized messages about the value of "normal" (and the devaluation of "not normal") that I had imbibed over the years. Being able to understand the sociology of disability helped me to deconstruct the negative messages and understand their source.
I don't think that this kind of deconstruction will come from the medical profession, as it's very wedded to the medical model of disability and the attended idea that there is a "normal" type of mind and body to which we should all aspire. I think that other disabled people -- and our allies -- are the people to whom we should be turning.
This sheds some light on a comment I've heard many times from parents of autistic children who are less-severe than my son: That the consequences of autism get worse as the child gets older. That just sounded crazy to me - I have trouble imagining anything worse than when my son was 2 and 3; what is worse than self-harm, other-harm, property destruction, all-round misery, anger, anxiety and isolation? But a child having self-loathing due to intense awareness of their struggles and feeling helpless and hopeless facing their future; I can see that being pretty dreadful.
ReplyDeleteI agree with you though that it's unhelpful (on the whole) to compare levels of suffering, particularly because attitudes, expectations and personalities will always have a huge impact on who "suffers" and the form of their suffering. I think it's important to always respond to the person in front of us, in their entirety; recognising that autism is just part (though a significant and important part) of their identity and self.
Of course, the debate is always muddied by the reality of limited services and funds to go around. The question of allocation, and the competitoin for limited resources, often forces parents to think in competitive and comparative terms. That no doubt impacts on the child, who is likely to eventually become directly aware of their parents' attitudes (which are affected by the competition for resources). I've met many such competitive parents, who gave me horrendous advice about exagerrating my child's condition (and suffering) to make sure he got plenty of help and support. Needless to say I ignored their advice (I am an absolute stickler for rules), and frankly I didn't need to exaggerate anything; the reality was enough to get us all the help we really needed.
Anyway, messy issues, multi-layers, lots of think about! (I wrote a post about these issues a few days ago too, but couldn't bring it altogether tidily so abandoned it pre-publish. After reading (and replying) to your post, I'm tempted to return to the post and see if I can bring it together better this time. Thanks for the extra inspiration.)
Thanks Kim and Rachel for your insightful and thoughtful comments.
ReplyDeleteA&O I hope you do find a way to post about this. I would be most interested to read it.
Hi Sharon,
ReplyDeleteHere's a link to what I ended up publishing, touching on some of the issues and concerns you raised in your post. I had to re-write it a few times and sleep on it, but I think it largely says what I want to say!:
http://autismandoughtisms.wordpress.com/2011/06/19/unfriendly-consequences-what-competition-for-limited-resources-does-to-the-autism-community-and-autism-families/