My experience in being an Âûtistic advocate is short lived thus far. I have not been in this game all that long yet. I am learning some big lessons pretty quickly at the moment, they are not necessarily easy to lear but they are important ones. There are a few unwritten laws that I am trying to get my head around. It’s not an easy thing for an Âû
tistic to get right this business of comprehending the unwritten rules, the unspoken things. It is in fact quite a challenge.
The first and possibly the most potent and easy to actually learn, but also possibly one that is not all that obvious at the start. This one is pretty simple but also pretty sad and heart wrenching. The lesson is that there is not one Âûtism community. There are multiple Âûtism communities and it seems they are far from united. They are far from on the same page and they are far from sharing common goals. There are what appears to be to me three main strands.
Firstly there is the Autism Parent community, often characterised by such phrases as Autism Mom or Warrior Mom. This is a community that spends a lot of time advocating for what they believe is the very best thing for their children. It is clearly full of people who very much love their children. It is unfortunate it seems to me that this community is often at odds or reticent to listen to some other strands of the communities.
Secondly, there is the professional community, characterised by psychologists, therapists, psychiatrists, and representative autism organisations like Autism Speaks, The National Autistic Society, Amaze, Aspect to name a few. This is a disparate strand of the community but it does tend to have a similar point of reference. That point of reference is one of the medical model of disability and the pathologising of Autism. It is characterised by a desire, it seems, to transform Âûtistic people into Neurotypical people, or at least to have them appear that way. There is within this community much talk about research, cures, prevention and the like.
The final strand is the Âûtistic community, the actual people who are Âûtistic and some allies. This strand of the community is characterised by a firm and intense belief that as Âûtistics we are not less we are different. We are neurodivergent and that does not make us any less worthwhile, or indeed less able to take part in society as fully fledged members. This community is responsible for standing up to quackery, harmful treatments and calling out injustice to Âûtistic people wherever they find it. Hashtags that characterise this group include #DifferentNotLess #ActuallyAutistic and #NothingAboutUsWithoutUs.
Over the last 48 hours or so I have certainly learned this lesson very clearly. It grieves me that these strands of community are not united in our stand for Âûtistic acceptance and inclusion. Indeed the very language used does not even cross over the communities, whilst the first two groups speak of awareness the third speaks of acceptance. Whilst the first two speak of people with autism the third speaks of autistic people. Whilst the first two speak of struggle, prevention and cures the third speaks of accommodation and inclusion.
Another lesson has been one that I have been gradually learning of recent times, but was very much brought into stark reality over the last approximately 48 hours. And that is that the first two strands of community seem unable to equate the Âûtistic voice with the Neurotypical voice. Indeed so much so that the neurotypical parental, caregivers, professional interpretation of the Âûtistic persons experience is of more weight than that of the actually Autistic person’s actual experience of that situation.
This is nothing short of sidelining and silencing.
I experienced this in two Facebook discussion threads over the last 48 hours. One, ironically was on a page of a disability rights group. The other a autism research groups page. The former in regard to the use of ABA and the latter in regard to an article citing early intervention and prevention.
In both of these threads multiple Autistic voices were sidelined and silenced whilst parental voices were supported strongly. On multiple occasions the actual experiences of Âûtistic people was discounted in favour of the voices of parents defending what they believed to be the experience of their children.
Let me be clear, the parents interpretations may be correct. But, that is not the point at hand. The point at hand is the discounting of the Âûtistic voice. The voice of actual experience discounted in favour of the voice who just witnessed an autistic going through therapy.
Actually I think this is just actually a further highlighting of the first lesson. Perhaps I am not learning multiple lessons here, perhaps it is just one lesson. That lesson that the Neurotypical world with all it’s supposed diversity and care and adaptability actually does not want to allow Âûtistic people to be Autistic. That in fact the neurotypical world view must be the dominant truth whatever the cost.
The status quo of a deficit model of disability must be maintained and the status quo of the so-called disabled and disordered must not be allowed to speak too freely, as, they may just say things we do not like, and they may just advocate for rights we don’t believe they are entitled to.
Perhaps that’s too harsh. It’s just what is flowing out the ends of these fingers right now.
The reality for me is, I am an Âûtistic full of passion ready to advocate. Here I stand. Looking to speak, to act, to do whatever needs to be done in order to call to account the injustices and the opportunities. Yet I stand in this position with a sense of not really knowing where to go from here. What is the next step.
So I have a blog I have a Facebook page. I participate in groups that advocate for autistic rights and call out in social media quackery, injustice, ableism and cure culture wherever I can.
But what next. Where next. Who next. I am a proud member of this tribe. I wear my Âû with pride.
I seek to do more, to be more, to stand firmer, to fight harder.
I seek allies to stand with me, to invite me to join them.
I am #ActuallyAutistic #IDontNeedACure I am #DifferentNotLess and I want #NothingAboutUsWithoutUs.
Will you join me? Will you recruit me?