Many within the Autism community seem to feel that we have a duty to help educate ‘professionals’ by exposing our own personal experiences of Autism to them with in Autism specific forums.
Personally I’m not at all sure that I agree with this premise, as it all too often holds the potential to place those of us with Autism, in the unenviable positions of feeling over exposed.
Which for many, can also amount to making us feel vulnerable.
The belief that it’s up to any one particular minority group to educate the wider community in order to create the understanding that they have the right to be treated as equals, is an issue that many other minority groups have faced.
And just like those within the Autism Community, many other minority groups have also had to cut their teeth on the harsh reality that not everyone who’s interested in you, is genuinely trying to help or understand you.
For example, back in the late 70’s, early 80’s, a male a researcher who was interested in researching gay males, pretended to be a gay man himself in order to win their trust, and acted as “lookout” for them in bathrooms and public venues, whilst at the same time recording details of their interactions with each other.
He then began following them back to their cars, taking down their number plates and with the help of a friend in the DMV, used that additional information to track down their real names and addresses so that he could turn up at the homes of these men, some of whom were married, and proceeded to blackmail them in order to gain more personal information about their lives, habits and preferences, all in the name of his “groundbreaking” new research.
Since then, it has been widely recognized by governing bodies, that lying, deceiving or in any way attempting to befriend or pretend to be a member of a minority group in order to attain personal information, is not just morally and ethically wrong but also potentially emotionally, psychologically and in some instances, even physically harmful.
Yet despite this, there are still members within the Autism Community who seek to enable and even justify the actions of professionals who routinely intrude upon the privacy of those within our community, by saying that ‘we as Autist’s need to teach professionals the truth about Autism’.
Yet I believe it is wrong for everyone within the Autism Community to constantly be made to feel as if it’s up to “us” to teach those who are often in positions of power over us, the truth of Autism via the revelations, either intentional or otherwise, of our own personal experiences.
This belief presents many within the Autism Community with a false sense of security because it implies that all ‘professionals’ are trustworthy individuals who are not only capable of viewing and understanding individuals with Autism as they wish to be viewed and understood, but are also willing to fly in the face of past theoretical frameworks, in order to genuinely present new research.
Yet, the truth is, those of us within the Autism Community, have no way of knowing for sure, whether or not said ‘professionals’ are intending to do either of these things.
Time and time again, it has been shown that those researching Autism often can and do, come up with new twists on the same old theories that many of us have found to be repugnant, simply in order to make a name for themselves.
Whenever such instances occur, we feel betrayed, lied too and let down.
And it is only after the fact that we realize all too late, that we’ve either misinterpreted their ‘professionals’ interest in us, or understand that they’ve misrepresented their intentions towards us in the first place.
Which ever way it goes, it’s always left to those of us who are not too afraid, or who have not been made to feel too vulnerable, to speak out.
Many of us lose friends along the way in doing so, as it can be difficult for others to understand exactly why and how another person may feel betrayed by participating openly within what they had assumed to be an Autism only group.
So insidious has the automatic acceptance of the “right” of ‘well meaning professionals’ to lurk within our groups for the purposes of ‘educating themselves’ become, that many no longer question it.
Yet I don’t believe that research ‘professionals’ have anymore “rights” to interact with ASD specific groups than a gynecologist would automatically retain the ‘right’ to interact within feminist groups, simply because they contain women who may discuss their private anatomy.
I think it’s time we took on board the lessons that have already been learned regarding the pitfalls of allowing professionals to engage with us so easily and without restrictions of any kind at all, on the internet.
I think it’s time we stopped thinking about Autism in terms of our perceived duty to try to educate our way into acceptance and equality and instead focused on protecting the “rights” of those within our community to feel safe, to remain free from harm and to not be taken advantage of by others when participating in online ASD groups.
We, as a community, need to keep in mind, that not everyone with Autism is either fully informed of the participation of ‘professionals’ within ASD groups, nor aware of the potential consequences of sharing highly personal information within such groups, should anyone within them hold any alterior motives for doing so.
Wouldn’t it be far easier for those who wish to engage with ‘professionals’ on the internet in order to ‘teach them the truth about Autism’, to actually do so in groups that are openly and specifically designed for that purpose?
Rather than allowing ‘professionals’ access to any and all ASD groups without question?
Wouldn’t it be easier, if we as a community, made a stand and decided that ASD specific groups should remain exactly that, ASD specific.
Just a thought.
Artwork by San Base