Search This Blog

Monday, May 14, 2012

Finding The Middle Road.

It's natural for us humans to gravitate towards those with whom we agree, unless you're the kind of person who thrives on drama and conflict. It's comforting for most people to find a niche of like minded souls who help support and thereby reinforce our own opinions. This kind of tribalism though normal, has its problems as it tends to create 'us and them' divides. We see this at work within all layers of society, including the autism 'community'. Actually if you spend much time reading ASD blogs, particularly in the US you see strong examples of this at play. There are some wide schizms in beliefs and feelings regarding autism. A lot of animosity and blame. And a lot of misdirected anger. There's a strong sense of 'you are either with us or against us' in many of the comments I read. Like supporting a football team, you are asked to declare your allegiances in order for others to determine if you are on their side. And while it's hardly surprising this occurs it does cause unnecessary hurt and misunderstanding. It's as if once others think they have determined your position then confirmation bias kicks in and everything you say from that point is coloured by expectations and assumptions.

But not all of us want to choose sides. Some are more interested in assessing someones point of view on  merit alone, regardless of the overarching philosophy an individual may subscribe to. And what about when you can see both sides of an argument or point of view? When the perspectives put forward by both sides of the fence have validity, you can choose to sit on that fence, refusing to identify with one group or idea over the other. Problem is, when you choose that path you don't get to be part of any group. You end up in a kind of ASD no mans land.

I sought out the online ASD community in order to connect with others who share our journey of raising a child with autism, and to listen to autistics who were able to share their stories. Doing this alleviated some of my worries about Harri's future as the information I found disolved misconceptions. I quickly found myself gravitating towards a neurodiversity approach to autism. I found the philosophy of that movement promising and empowering. It also makes a lot of sense to me. But increasingly I've felt uneasy about a lack of acknowledgement in the narrative about those who have no voice, literally. Those for whom autism is overwhelmingly crippling. Not because of social constructs of disability, but due to inherent suffering such as impulses to self harm, continual sensory overload, inability to effectively communicate wants and so forth. There is a saying in the neurodiverse movement, 'nothing about us without us'. Which is a call for inclusion, particularly in decision making processes with regards to autism, and is a laudable goal. But lets also acknowledge that many 'us' can't advocate on their own behalf. And if they could they may not agree with the aims of the less severely disabled advocates.

I in no way want to suggest the aims of those who are able to advocate for themselves are not worthy. They are and I support the objectives of self determination. They are smoothing the path for generations of autistic people to come and I get how all autistics no matter how impacted by their ASD will benefit from this work. I am grateful to them for that. But some acknowledgment by those leading the charge of autistic rights that there are many who cannot and will not be active participants in creating their own destiny would be valid I think. Accepting and acknowledging that not all challenges autistic people face are due to societal barriers but primarily to the disabling features of autism.

My son will most likely be a great self advocate. His Aspergers allows him to communicate well and his intelligence allows him to learn effectively. He will enter mainstream school in the coming years and at this point we remain optimistic that he will get along reasonably well.  On the other hand the therapy centre Harri attends consists mostly of children older than he and more profoundly affected by their ASD. There we see the full spectrum in all it's wonder and suffering. It's impossible for any of us to know what the long term outlook will be for any of the children there, but for some independent living is probably not likely. And I can appreciate why the parents of those beautiful kids would bristle at suggestions by some in the neuro diverse crowd that autism is just neurological difference. That community attitudes to difference are the problem, not the autism. When it is clearly not the case for many of these children.

So what of those of us who appreciate the push by self advocates to challenge stereotypes and misconceptions about ASD yet also see autism as a burden for our children and attempt to mitigate as many of the disabling aspects with interventions such as ABA?  We don't buy into the autism as tragedy ideology because we see how unhelpful that is, but we do not accept many of the premises put forward by those in the neurodiverse crowd despite supporting their agenda for social awareness and inclusion?

We choose a middle path. We read a variety of opinions about autism. We try to keep our eyes on the research, which we hope is credible. We rejoice when people with autism accomplish great things and we cry when autism leads to death by misadventure through wandering. We marvel at our kid's ability to learn and grow through their challenges and we are horrified at the senseless pleasure others get from bullying them due to their differences. We shudder when reading about parents putting their kids through experimental treatments in desperation to cure autism. And we also understand when isolated parents break down from time to time and state they can no longer manage caring for a child who creates havoc at home in bursts of destructiveness and harming others and self. We appreciate listening to people with autism share their thoughts and feelings, and we also disagree with their perspective from time to time. And this 'we' I speak of disagree with each other too. And that's OK.

We don't hitch our wagon to any one autism philosophy because we understand the experience of living with it is so broad and complex and messy and human. We don't get the comfort of belonging to a tribe where you can return for reassurance after a hard day on the frontline slinging bows and arrows. Where you will be reaffirmed in your thoughts and feelings. There are those of us without a team who try to keep understanding and questioning our own assumptions and ideas by listening to others. A wide range of others. And in doing that I've found, a small group of people aside, most have something of value to add to the ASD conversation.


18 comments:

  1. "That community attitudes to difference are the problem, not the autism. When it is clearly not the case for many of these children."

    Very interesting topic you have posted. I love the above comment you made. That it is the austim itself that is the major problem not just the community attitudes alone.

    ReplyDelete
  2. Thanks so much Penny. This was a difficult post to write and your comment means a lot. Take are. xx

    ReplyDelete
  3. That was my favorite quote too. It's kind of hard to see where my son lies within the Spectrum. On the one had, he's very socially orientated which is extremely positive, but on the other hand his sensory issues make me wonder just how independent he'll really be, and if he'll get his diagnosis "reduced" with time. I think it's unfair to say that we shouldn't think about doing things to help our children better assimilate into this mainly NT world, just as I think it's unfair to completely damn the Spectrum. There are definitely strengths to be found in both sides (NT & ASD), but we most certainly shouldn't "forget" or gloss over those most affected and how they might feel about things. But yeah, experimental, possibly dangerous treatments? **shudder** I'm of the opinion that if it won't hurt him, then I'll try it, but I have more faith in scientifically proven methods.

    ReplyDelete
  4. As I was reading this post it felt like you were reading my mind.

    I don't feel like I belong in one camp or another of the autism community, but feel like people try to pigeon-hole me to suit their own agendas, which just gets in the way of an open and progressive dialogue.

    I get frustrated that those who have less severe autism than my son, choose to ignore his reality; cast him away as some unpleasant stereotype that they wish the public would either forget about, or blame public attitudes for his objective hardships.

    I am hurt by the objectives of some to treat parents of autistic children as the enemy, to be side-lined and belittled; we are part of the autism world too, we live it and attempt to understand it every single day. Our children are our lives, our family, our flesh and blood.

    Why does being a parent count for so little to some of these people? It does make me wonder if they've ever had children themselves, to not understand that level of all-consuming love and devotion that we have for our kids. And to think that our experiences too, are meaningless and outside of the autism dialogue.

    I suspect my son will be able to advocate for himself one day too, if his current rate of development continues (who knows). But no matter how high functioing he gets, I as his mother will never forget or put aside the reality of the families - both the children and the parents - living with severe autism.

    Like you, I am grateful outspoken adult autistics are advocating for their interests, and it does make my son's future brighter. But not if the rhetoric is at the expense of the most needy families, and not if it paints over the very real problems autism will always pose for his life.

    Rant finished.

    Short version of my comment: Thank you for your post.

    ReplyDelete
  5. Thanks MM. xx

    A&O I do think many people who dismiss parents are not parents. They can't appreciate that we live with Autism every day too. Not from within of course, but we see our children's struggles, and we engage in our own battles to access supports, funding and services (and in your case AWOL taxi drivers). We understand the challenges socially because we bear witness to them every day too.

    I also suspect many self advocates had very difficult childhoods at the hands of parents and teachers as their autism was probably not diagnosed til later in life and consequently there is a lot of anger projected onto parents they interact with who trigger those memories and feelings.

    There's currently a post on the Autism Blogs Directory arguing that disability is a social construct. I urge people to read it. I just can't agree. As a matter of fact I find it bordering on delusional.

    ReplyDelete
  6. This is such an good post. You expressed some things I was thinking.

    "When the perspectives put forward by both sides of the fence have validity, you can choose to sit on that fence, refusing to identify with one group or idea over the other. Problem is, when you choose that path you don't get to be part of any group. You end up in a kind of ASD no mans land."

    I do feel quite lonely right now about the challenges my son is facing. I read this post at ASParenting, which actually had some really good points.

    http://www.asparenting.com/2011/11/04/are-you-standing-in-their-way/

    I know that my son needs to have more asked of him (but God forbid that I push!).

    I've been trying to reach out in real life to other parents, and also to challenge myself to read some things outside of the box on other blogs. It's not easy. I started Round World Flat Map blog in trying to process what's going on right now for me.

    Thanks for writing this. I don't feel so alone after reading it.

    ReplyDelete
  7. "There's currently a post on the Autism Blogs Directory arguing that disability is a social construct. I urge people to read it. I just can't agree. As a matter of fact I find it bordering on delusional."

    I went over for a read and I also found it rather too simlistic and misguided (and frankly wrong in some parts, such as the analogy to religion claiming there's no such thing as different levels of religiousness just like there's no mild or severe autism... never heard of fundamentalists, liberals, etc? What a poor example).

    I think I've figured out where some of the author's reasoning has gone so awry, and I know how to put it into words, I just need to find the time to write such a post. (If I do I'll be thanking you for directing me to the piece).

    ReplyDelete
  8. Thank you for posting this. This is something I've been thinking about a lot. I would like to think I understand both sides, but don't quite belong to either. Both seem to have good motives, but misunderstand each other's. It's good to know I'm not the only person who feels caught in the middle sometimes.

    ReplyDelete
  9. A&O I as usual look forward to that post in anticipation.

    Dixie, Iv'e enjoyed reading your comments around the blogosphere, you are respectful, measured and well considered in your reflections. And far less defensive than I :)

    Emily, thanks so much for stopping by and commenting. I will be adding your blog to my blog list shortly.

    ReplyDelete
  10. "And what about when you can see both sides of an argument or point of view? When the perspectives put forward by both sides of the fence have validity, you can choose to sit on that fence, refusing to identify with one group or idea over the other. Problem is, when you choose that path you don't get to be part of any group. You end up in a kind of ASD no mans land."

    Yuh.

    I feel regret that we in the autism community- autists, parents, siblings, spouses, friends- are forced to deal with very discriminatory generalizations about each other at all times, and it causes such hurt feelings. It's usually all minority vs. majority, unfortunately.

    From my limited perspective, I see parents often held to higher standards than self advocates- it's often ignored just how many parents may fall somewhere on the spectrum, themselves, or just plain have their own communication ineptitudes, and yet I feel parents in general can be lambasted for an unintentional bad choice of words, or a misunderstanding that happened as a result of something completely out of their control. I hate that just by sheer numbers, parents can more easily sway public opinion and resources in a way that not all self advocates are okay with. It makes me sick that anyone would talk badly about their children in public or equate their struggles with the struggles a disabled person faces.

    I just wish that some advocates out there would acknowledge that, as parents and caretakers of those who are not able to live independently, without support, some parents have no other choice but to assume an amount of control over their children's lives that, in other circumstances, may be overstepping their authority as parents. Disability Rights is a tough, tough, sensitive issue, and I cannot imagine what it is like to be biologically, essentially, powerless at times because of some disability... but all the accommodations in the world are not enough to allow a person severely disabled by their autism to live as freely as your average NT person, all other things equal. I feel it is unfair to throw around the word "privileged" to describe parents who acknowledge this truth simply because they HAVE to, because their children- young children, adult children, anything in between- do not pick their own meals, cannot self report on their take on therapy, or cannot survive outside of an institution.

    Misunderstandings (and just plain disagreements- I do not think it fair to assume the only reason we cannot get along with un-like-minded people is because they do not understand what we really mean) aside, you are absolutely right- most people involved in the discussion around ASD have something valuable to say.

    ReplyDelete
  11. Really nice points Sunshine.

    ReplyDelete
  12. 10 minutes after I posted a link to this on twitter the following tweet appeared.

    If you're sitting on the fence, you lack either courage or conviction or both.

    I asked the author, whose opinions I normally highly respect, if the comment was directed at me but she has refused to respond. I think this makes my above point all the more. Black and white thinking at it's most divisive.

    ReplyDelete
  13. If it was directed at you then the person hasn't understood your post.

    Being able to appreciate multiple view-points and recognise the reality of different experiences, doesn't equate with contradiction or a weak mind, arguably the contrary (a strong and open mind).

    Just because you don't fit neatly into other people's boxes, doesn't mean you lack either courage or conviction, in fact, it is a sign of courage that you refuse to be bullied or intimidated into an incorrect label.

    Hopefully their comment was random and incidental.

    (On an unrelated point, I spent half an hour working on that post I mentioned I was going to do, then the internet stole all my work. Very disheartening.)

    ReplyDelete
  14. Oh No A&O I'm wincing in pain at the thought of it. Takes me back to my uni days when I didn't back up my work up and lost a whole assignment. So frustrating.

    I hope you are right about the tweet. But I'm not sure. I hope they will take the time to clarify their point. I agree with your assessment above, and was stunned to get the reaction (I think) I did. It seemed to me if they wanted to demonstrate courage and conviction they would comment here. Or at the very least have directed the tweet to me directly.

    ReplyDelete
  15. This is such a good post, I'm going to have to share it! I've been having the same thoughts, but you spelled it out so well!

    ReplyDelete
  16. H Christine, thanks so much for stopping by, and for your very kind words.

    ReplyDelete
  17. Thanks so much Gavin. Great to connect with you online.

    ReplyDelete