Community service announcement:
Dear organisations jumping on the Autism Bandwagon. You really need to do better than “everyone else” if you wish to win the trust and confidence of Actually Autistic people. That is IF you truly wish to be inclusive (as you so claim) and learn about intrinsic autistic modalities and paradigms, in order to properly support autistic people in respectful ways. This is the ‘homework’ you need to do BEFORE asking autistic people to do freebie work for your ’cause’. Show us that you are worthy of our efforts. Any other is at best mere tokenism, and at worst exploitation. Add to that, spreading harmful misinformation.
Ever since my first encounter with the grand machinery of “Autism Awareness” in 2011, I have been slowly, gradually, but oh, so surely, wearied and worn down by the sheer tsunami force of overwhelming mis-information, negative propaganda, and stubborn, insistent ableist antagonism and aggression against actually autistic people.
From incredulous and yes, even derisive, furtive looks to outright sickening bald statements in my face, and condescending ‘compliments’, I have gathered quite a weight of flotsam and jetsam along the choppy tumultuous path of autism advocacy and the activity of Just Being Autistic in a world that values non-autism. “But you can’t be autistic, you are too normal!”; “You are nothing like my low-functioning child, how can you even understand what hell I am going through?” (Note the focus on the “I” and not the child); “You ought to be more empathic and sympathetic towards parents who resort to killing their autistic children. It is really horrible for them to face bringing up a child like that!”; and “Oh, my goodness, you have EXCELLENT eye contact, you don’t come across as autistic at all!” – are just four teeny weeny examples in this murky, swirling, foul-smelling whirlpool.
I was not going to write a blog post about this, I was planning to ride the Awareness Month out as quietly as possible, just re-posting and sharing what other awesome autistic people (and non-autistic allies) are putting out this month. No more spoons, I said to myself. Need to concentrate on the fabulous projects at hand, I reiterated to this Autistic Bunny.
Of course, this “stay away from stress and harm” mantra blew up in my face, when I decided – foolishly or not? it remains to be seen – to step into the gladiator’s arena this morning by posting a link and a comment about respect and inclusivity on the Facebook page of a certain organisation with which I had a mini run-in last year. This organisation approached me to be one of the speakers in their autism-focused event, claiming to do non-profit work in support of autistic people. When I asked about a speaker’s fee, they became defensive, saying that nobody in their panel asked for a fee. When I explained that I would like to see some gesture of respect and appreciation for my time and expertise, they rudely told me to talk to their sponsors myself for extra funding. Later, the person sent me an attachment via Whatsapp, asking me to take a look at the contents and let them know my opinion. Obviously, they assumed that I still wanted to be involved in their project, despite having treated me so carelessly (perhaps unintentional, who knows? – but careless nevertheless). I replied that I would look at it if they sent the document via email, but I received no email follow-up, not in my Inbox or my Junk folder – the person just disappeared into the nether regions of hazy neurotypical disregard (this kind of vanishing act is something that happens a lot in the so-called professional world of NT design, but is extremely vexing to someone like me, who thrives on order and clarity). Even on a normative level, I have been informed (by neurotypical friends) that this kind of attitude and action is at best unprofessional. Why then is it so prevalent? I shudder to think what it can be, at the very worst. I shall refrain from going there. We have to have hope, don’t we?
So, here goes Autistic Bunny again, venturing forth where demons fear to tread, and angels cry with dread. (Oh, it rhymes!!!) I posted this:
Some thoughts on autism ‘awareness’ from the viewpoint of Actually Autistic people: http://autistictimestwo.blogspot.sg/…/charity-that…
The first reply from them was benign enough.
Thank you Dawn-joy Leong. Just to clarify — “Awareness” in this video’s context is awareness of issues and struggles faced by caregivers in order to draw the necessary support they need to “cope”. We are planning our (diversity campaign) and (organised event) 2017 dialogue scheduled for Nov 2017. Working hard to find venue support and will announce the event soon (need help for this).
**If you / anyone here can help identify autistic adults and people who can help with the 2nd series of (video series aimed at providing insider view of autism) video campaign, do let us know. We would like to have their take on #Neurodiversity in the (1) academic, (2) social, (3) work and (4) welfare setting. This will tie in with the 2017 dialogue and promote “acceptance”, “equality” and “inclusion” in the context of the (a government dictated agenda for people with disabilities). Tq
It is the spirit behind this “awareness” that I am addressing, with the hope that people like your good selves can begin to become better informed and educated, in order to help those you are trying to help.
Also, as the leadership behind your planned efforts, you are the ones which ought to become adept at understanding the topic, so that you will find the RIGHT autistic experts to want to volunteer and be a part of your projects. Hopefully, you will make good progress in this area.
Things were going swimmingly, or so I thought, and another innocuous reply from them followed:
Noted with thanks Dawn-joy Leong. My team would love to work with yours to drive this. Your insights and participation are essential if we are to do this right.
I was beginning to hope, and be quite impressed, really, it seemed a vast improvement from last year’s communications. So, I persevered.
Thank you. Would love to work with organisations like yours, but much more groundwork needs to be done to bring organisations into better real awareness and sensitivity of autism, before actually autistic people can feel comfortable working with them. For a start, respect for the autistic paradigm and operational modality will help greatly even in initial dialogues. It helps much to actually listen to autistic people, if you wish to address autism and support for autism. How? There is a lot of information available for free in the internet. For a start, look at ASAN http://autisticadvocacy.org/ and AWN https://autismwomensnetwork.org/ in the USA and in the UK there is the NAS http://www.autism.org.uk/.
I deliberately supplied links to the established organisations, leaving aside the more radical ones, just as a gentle introduction. Change is not easy for anyone, and as shocking as it may seem, although autistic people are accused of reacting violently and stubbornly to change, I have found (time and time again) that non-autistic people have responded even more defensively with vim and vigour to the suggestion of new ideas and concepts that challenged their entrenched ones, than any autistic person I have ever come across, whether personally or online.
The hint of whinging soon emerged, that subtle accusation of non-compliance. Autistic people know that tonality well, whether written in text or spoken by the non-autistic forces that be who do so in the name of “helping” us.
We hv received many advice but sadly no one has volunteered to be spokespersons, at least not yet. But we hv trained a few autistic youths to be photo journalists on our side under the (photography) programme so there will be more inclusive involvement.
OK, so maybe this neurotypical person is a little confused, I should be more patient and explain this further? Righto, here we go.
As I said above, you need to do your homework first, starting with your own understanding and respect for the autistic paradigm, BEFORE you can expect autistics to be comfortable to work with you. Listen to us, BEFORE you ask us for help. As a professional in the field, I choose the organisations carefully too, whether they are freebies or paid work. Thank you for wanting to learn and listen. Very hopeful that something good will come of your good intentions.
I thought the exact sequence was quite clearly stated. Why would any autistic person be obliged to want to volunteer services to an organisation that has not yet proven themselves to have any depth of true understanding of autism and the autistic paradigm? Why should an autistic person be called upon to assume the trustworthiness of a claim that has dropped out of virtually nowhere, just because it has the wording “autism awareness” or some such ring in it? Surely the onus should be on the organisation to prove their claims? I have asked, in the past, for more details about this organisation, and they have repeatedly been hedgy and illusive. I thought that was due to my own lack of comprehension of fluid neurotypical interactional habits, so I tried again. Their reply to me seemed off tangent, and I could sense some defensive antagonism growing. They mentioned the issue of non-payment, which had nothing to do with my message this time around.
Noted with thanks Dawn. We will do our best to learn and listen more. Our groundup initiatives are driven by “volunteer” allied health professionals, educators, other experts, caregivers etc. (the name of their Brand company), the main org driving this don’t pay for any services offered as we hv a very small set up and cannot take on anymore financial responsibilities. Who ever comes on board do so becos they know the (name of organisation) Strategy group drivers personally, know our work or hv witnessed our work. Our partnerships are based on friendship, trust and referrals. But the network is growing as we are working at ground level. We will get there, slowly but surely! Tq!
OK. I see. So now you say you only work with personal friends, who already know and trust the organisation. Right. That is fine. However, I am talking about gaining better understanding of the actual autism paradigm, and showing the people you purport to be helping, some worthiness of their trust (the targeted audience, not just personal friends – the wider world of autistic people and their caregivers, yes?). In any case, this ‘personal’ angle came as a surprise to me. I was approached by this organisation out of the blue, this person was not a personal friend, I had never heard of this organisation before, why did they fish me out from the heaving sea and expect me to trust them without having to see any proof, if they only work with personal friends? Or is this their way of collecting personal friends? Confusing, oui?
Autistic Bunny keeps on keeping on.
This is not about pay. I hope you are able to become better educated and acquainted with ACTUAL autistic paradigms and modalities. It is about earning the trust of autistic people before asking them to participate in your activities. As an autistic person and also a professional in the field, I am always on the look out for this. Let’s hope for progress! Good luck.
On the side issue of pay, since you raised it, autistic people need to eat too, and it is not difficult to find alternative ways to honour the effort, time and expert contribution of ALL autistic people you recruit to help in your organisation’s activities. Not necessarily salaried or paid according to market rates, but gestures of respect according to how much your organisation values actual autistic input. For myself, I have clearly indicated to you previously that I do charity work, a lot of it, but the principle behind all interaction has to be right. Autistic people are the true experts on autistic lived-experience. We are not tokens for organisations to put there to validate their claims of “inclusivity”. Simple ways to show respect include communicating in the mode which is requested by the autistic professional, and not insisting on the organisation’s own way of communication. It can be as simple as using email instead of whatsapp, or the other way around, as per request. Professionalism deserves professional. Thanks again for being open to new ideas and progress! I wish you good luck!
The defensiveness finally emerged outright in their reply:
Of course Dawn. We do what we can. Like everyone else.
Um. OK. No. Not “like everyone else.” Clearly my message got scrambled and garbled along the way from Autie channel crossing over to NT channel perhaps? You know, that Mac to PC transfer thingy? Why be “like everyone else” – the everyone else being typically ignorant of autistic people’s actual needs and ways of native functioning at best, and at worst, a lackey and ally of the ‘cure and correct Autism’ movement so strong and pervasive out there. “Like everyone else”, to the autistic person, especially during April ‘Light it up Blue’ month, is a death knell. Anyone closely associated with autism in a respectful and inclusive would know this. Obviously this person either has no idea, or does not care to have any. Both explanations do not sound very good at all.
Autistic Bunny becoming fatigued by now. Still trying to be patient and kind towards NT.
You will have to do better than everyone else, to win the trust of autistic people. All the best!
But NT does not like that bald brutal truthful statement. Nope. Out comes the “social gasp” and the babble of excuses, all off tangent, all about lack of volunteers (where are the personal friends who trust the organisation so much?) and lack of manpower, and how hard they are working, blood sweet and toil, to help us autistic people. And they clearly have no idea what the word “freebie” means. Whether for profit or not-for-profit, asking anyone to do anything without due respectful honour (whether in payment or gift in kind etc), or even just asking anyone to do anything for free at all, **is** a FREEBIE!!! Sigh…
Wow. Dawn, we will try. But like I said, we are mostly volunteers and doing what we can. We can only do so much. Other community members and organisations must come on board too. We are already working with some caregivers and autistic people (their children) so we hv gain some of their trusts. When we first started 6 yrs ago, we could not find caregivers who were willing to talk until we started befriending them. We are befriending their kids now through our support activities & are working on gaining their trust. And by the way, this work is not-for profit so we are not asking for “freebies”. We are asking for everyone to do their part. Blessings!
Asking for everyone to do their part? Sounds to me like an irate school teacher trying to gather an unruly group of lazy students who want a free party without having to lay the table and dish out their own food into plates. By the way, their description of ‘befriending’ sounds to my fraught nerves much like the strategy of ‘grooming’.
Be patient, always give the benefit of the doubt, that is what is constantly being drummed into our befuddled minds. Right. Autistic Bunny, be patient with neurotypicals, they know not what they blibberblabber, they know less what autistic persons gibberjabber, they have no literal clear thinking or understanding of words. It’s so much cloud and fluff. OK. Be PATIENT!
I think you have not understood what I am trying to put across. It is ok, please give this serious and DEEP thought, to figure out what I, and many many autistic people, are trying to communicate with organisations like yours. It would be good for you to do more homework on this topic, before continuing a protracted conversation that seems not to be progressing much further beyond defensiveness. I have no intention to be antagonistic, merely attempting to help you understand the intrinsic autistic paradigm better, with a genuine hope for reciprocal empathy and dialogue. It does not help our cause if autism-focused organisations cannot find it in their time and energy to properly research the autistic paradigm to educate themselves better so as to communicate better with the actual people they purport to be helping. Please give it some thought. Thank you again, and I shall leave it here, as you clearly need space and time for the message to really sink in. Thanks again!
Phew. But there is more…
Dear Dawn-joy Leong, to conclude as this is a very public discussion on our page, we wish to reiterate AGAIN that we are doing our best and certainly hope to do better to cultivate inclusion and acceptance — within the scope of our abilities and expertise. As indicated above, we are already working with caregivers and autistic persons so there IS inclusion and empathy. We are also working with relevant professionals who themselves hv conducted their own in depth research. We can only apologise to the autistic community and their families if our work falls below their expectation.
As a final word, I want to take this opportunity to encourage our many volunteers and contributors,
“Without you, we would not have gone on for 6 years. With you, we hope to go for another 6. Happy 6th anniversary and blessed Autism Awareness Month!”
“As a final word”? Urm, I may be wrong, but that sounded like I was being shut off, in the politest of NT manner, yet with thinly veiled commination, of course. Being the ever diligent autistic, my final (oh, Bunny, let this be the end of your patience and perseverance, at least in this little ringaling circus anyway) reply follows:
This is my very public persuasion. You do a great deal of active work, of this I am certain. But please educate yourself more about our Actually Autistic paradigm. It will greatly enhance our wellbeing (which is what your organisation is about) and encourage graceful and gracious reciprocal empathic resonance for all concerned. 🙂 Nobody is putting “expectation” upon you, autistic people have been very very patient for many many years. Only now do we even have a little small voice, only now are we emboldened slightly to speak. Hence I am speaking too. In the hope that there can come a day where a neurocosmopolitan society can be envisioned by all and achieved. AGAIN, I urge you to try and understand my message in a deeper and meaningful way. Not as an accusation. It is a message of hope and friendship, and a professional opinion given freely for the greater cause. Nothing About Us Without Us. 🙂 Thank you for the conversation. I hope it will give way to progress. All the best!
A little muddly, I admit. My strength is waning… In fact, truth be told, I am completely exhausted. Something this person probably has no idea whatsoever about – the sheer monumental effort it has taken for an autistic person to converse this way with someone who has no reciprocal empathic understanding whatsoever, and doesn’t even seem to grasp literal worded sentences. Or, perhaps the inability to communicate lies on my part, my command of the English language may be insufficient, or I am lacking some neurotypical power to reach the neurotypical brain? In any case… this has used up all my “speak to obtuse neurotypical” energy resources. That is a small little bucket, with a mini spoon. It’s all depleted now.
I am going to hug my Canine Angel, and revel in the rich textures, smells, tastes, sounds and visuals of clement non-worded communion with a creature of another dimension.
There really ought to be a Neurotoypical Awareness/Bewareness Month, where confused autistics can be informed all about discombobulating neurotypical habits, empathy impairments, nebulous linguistic expressions, mysterious defensiveness, frustrating lack of precision, confounding belligerence and insistence on wanting to ‘help’ us autistics according to their own perceptions of how they wish to help us. Oh, wait, one more bizzare feature: insisting that they know better how we ought to be called (person with autism – like person with unglamorous handbag), instead simply respecting how we actually wish to be known (AUTISTIC person). I did a little experiment among my friends in Facebook, and they (autistic people) came up with a lot of suggestions, topics they’d really want to hear and learn about. And with great humour too. Who says autistics have no sense of humour? Oh, yes, neurotypicals said that. 🙂
Thank you for reading this far. It’s a long, long, road ahead. An arduous uphill journey. Us autistics are a persevering bunch. We will continue to try and try again to educate the non-autistic world about our actually autistic existence. That is, if the neurotypical therapists do not shake that out of us during ABA treatments.
I leave you all with this beautiful (to me anyway) image of Lucy in Sonorous Repose.
Awareness Acceptance Day!