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.