Why are so many autistic adults upset about and with “Autism Moms”? Why do so many autistic adults (myself included) seem to speak so ‘harshly’ against Autism Moms? And why are so many autistic adults broken, devastated, crushed, traumatised and yes, suicidal?
It is a collective hurt, a cultural pain and trauma suffered by the Autistic Community, that is embedded deeply inside our Being. No other group of disabled persons in recent years has been subjected to such forceful and sometimes even well orchestrated multi-dimensional assault, exploitation, misrepresentation, patronising condescension and stigma as Autistics. Everyone is an expert on Autism, except the Actually Autistic. The tide is swelling, roaring in, as more and more players join the Grand Autism Circus: snake oil peddlers selling expensive remedies that are useless at best and harmful at worst, self-proclaimed Autism Experts touting exorbitant programmes which promise ‘cure’ and ‘reversal’ and/or setting up ‘Autism Recovery’ companies, Autism Social Enterprises promoting ‘Autism Exposed’ events, and yes, I must not forget (how could I forget?) the collective aggression from that foreboding entity called the “Autism Mom”.
I only have (barely enough) energy to express my views on and reveal my experiences with just one of the above: the “Autism Mom”.
The recent “To Siri with Love” caused a storm, with autistic adults crying foul – and rightly so – over the way the author mocked her autistic son, making jokes about imagining him having sexual encounters, writing about his bathroom habits, and declared that she wanted to gain power of attorney to have her son sterilised when he turned 18 because she felt she wanted to save a child and the world from someone who was incapable of properly bringing up a child. When I read about this on social media – mostly Twitter – it made me extremely distressed and upset that any parent would a) happily publish such intimate details about their own child, and b) stolidly remain unaffected by all the cries of actually autistic people, never once stopping to consider why there is so much objection from adult autistics to her book. Yet, the non-autistic world seems to be most supportive of both the book and the author, some even declaring it “inspirational” and “illuminating.”
My own problem with this whole scenario is not about who meant what and who did not manage to ‘get’ the ‘humour’ and ‘message’ behind the book etc. The author already said she did not write the book for autistic persons, she wrote it for non-autistics – though I would question why write a book about autism and exclude autistic people’s perspectives and feelings, and what kind of non-autistic person would enjoy this type of book? (The answer is obvious, yet surprisingly not very obvious to many of the Neurotypical population.) To be fair, not all neurotypical / non-autistics are insensitive exploitative people. In fact, all my non-autistic friends who are parents of autistic children, and even those not parents, were appalled at the book – but ah, yes, they are parents who value their children’s privacy, dedicate their time and energies on supporting their autistic and non-autistic children in ways that show their children how to value their intrinsic personhood, or they are just simply decent people who want to support others who may be different in appearance and function. None of them have written any book to boast of, none of them go around lecturing others about Autism as if they were an authority on the subject, and none of them indulge in the “poor me, I am suffering so much because I have an autistic child” or “look at me, I am such a hero to love an autistic child” kinds of sentiment.
In my own immediate realm, along my own journey of advocacy and professional practice, I have encountered my fair share of Autism Mommies, though none (thankfully, for the sake of my own sanity) as outrightly aggressive or outrageous as the author of that dreadful book.
It’s funny (or many not really funny at all?) that so many Autism Moms happen also to be Autism Author Moms and Autism-Speaker Moms, claiming they want to educate the world about autism so as to build a more inclusive, understanding society for their children and other autistic people. Very noble indeed, but if this were the only reasons for doing what they do, then why is it none of them want to listen to the voices of actual autistic people?
These are the kinds of Autism Moms that I have encountered in person and online in social media groups.
The Educational Video Autism Moms: Autistic people plead with Autism Moms not to post lurid, dramatic videos of their children in various states of distress and meltdown. Autistic people tell Autism Moms why it is detrimental to their children not just in the here and now, but well into the future, and this with possible far reaching ill effects. Yet, the Educational Autism Video Moms refuse to pay heed. I’ve watched these videos, too many for my own good, and each and every second of the intrusion was grievous to me. I thank my lucky stars that I grew up well before the days of social media, else who knows what parts of my anguish, pain and suffering would have been preserved for posterity? I can only imagine what the children would feel – the multidimensional horror and devastation – when they become adults. In some of these videos, the girls and boys appeared in states of undress, some even stark naked. So, it is not enough to be recorded in their most vulnerable emotional and mental states, they have to endure yet more vulnerability being physically exposed to the world. Oh, and wait, some of these moms claim that they were given permission to flaunt their children’s privates and innards by the children themselves, and this is valid license! They are children, how is this even a reasonable excuse? What is the legal age of consent, and are the children really fully cognisant of what they are supposedly agreeing to? How could this be considered remotely decent, let alone educational? How do such ‘revelations’ contribute towards deeper understanding of and empathy towards Autistic persons and Autism? How far do you need to go before you break an already fragile soul?
The Know-All-About-Autism Moms: Many Autistic people are now coming out and writing about their lives and experiences, there are countless blogs, vlogs and even books published in first-person narrative nowadays. There is no shortage of information from the lived-experience perspective. Google is not difficult to manage. There are also free access articles on Autism by Autistic neuroscientists, psychologists and cross-disciplinary researchers in the field of Autism, readily available online or in the library. Yet, the Know-All-About-Autism Moms do not bother to consult any of the above. They know it all already, so they go around giving talks and lectures and workshops about Autism, claiming expertise on a subject, on a paradigm, about which they actually understand precious little. They toss out advice on how to dress, what to wear or not to wear, how to decorate your home, what foods to eat or not to eat – all purely from their own observations (which may or may not even be accurate) of their own child. What kind of science is based on only one subject studied? Yet these moms dare to speak with authority – and there will be enough people who would pay heed and be fooled, such that the ones who protest (mostly Autistic adults) are shoved aside as nasty naysayers, and the vicious cycle of misinformation, myths and stereotyping repeats ad nauseum, unchecked.
The ‘Autism Exposed’ Author Moms: Autistic people try to tell Autism Exposed Author Moms not to reveal private, intimate details of their autistic children to the whole world in negative ways, to treat the material with the respect that their children and all autistic persons deserve. Yet, the advice is brushed off. “You’re overreacting”, “Stop being so sensitive!” Right, fine. Let’s toss the whole debate over privacy aside, shall we? Since privacy means different things to different people Let me put it this way: even if us autistic adults were indeed “overreacting” or “so sensitive”, doesn’t it then make you understand all the better why you should not do something that tramples upon our sensitivity? Your child is autistic, why do you deliberately expose their most personal details to the world knowing that they will one day become “overreactive” and “so sensitive”, and thus be very deeply hurt by your actions? Is this not in itself an act of betrayal? Do you show love and respect to someone with a peanut allergy by feeding them peanuts? Do you show how much you value someone with a lactose intolerance by making them drink cow’s milk? Do you think you are being kind to someone who is sensitive to smoke by blowing smoke into their face? I can go on and on, but I think by now any logical minded human adult should get the idea. How can this be remotely ‘inclusive’, and what kind of ‘education’ are you providing the rest of the world?
The Exploitative Author Moms: Autistic people tell Exploitative Author Moms that they ought to consult with actual Autistic adults, so some who wish to appear ‘inclusive’ make tepid attempts to connect. Mind you, they are clever, they’ve learned to rattle off in the ‘right’ language, repeating the ‘progressive’ ideas that make the Autistic adults let down their guards. Yet, as soon as the Autistic adults’ perceptions do not align with those of the Autism Author Moms, the condescending chiding begins, the belittling, the rubbishing of “overly fanciful” ideas shared by the trusting Autistic adults. Another tactic – though not confined to Autism Author Moms but more a general Autism Author trick – is to ask Autistic adults to contribute to their books. There is a saying, “The proof of the pudding is in the eating,” and here, the truth reveals itself when the Autistic adults invited to participate in this exercise dare to ask for payment, an honorarium, or percentage of royalties. If the author agrees to negotiate mutually acceptable agreement, well and good, though I still won’t advise throwing all caution to the wind at this stage. But what does it tell you about the author if they flatly refuse to negotiate at all, not a single cent nor any small concrete gesture of appreciation? Most popular reasons thrown at me like stink bombs in party wrappers by Autism Author Moms and Autism Authors: “I’m not doing this for the money!”, “I don’t get much money from royalties!”, “I’m doing this to help your community!” What do these words imply? Are Autistics presumed to be so poor at ‘reading between the lines’ that we cannot logicise the implications?
“I’m not doing this for the money!” – Are you saying that I am obliged to happily dive in and support your personal pet project for nothing when I do not know you (apart from your random email / phone call / WhatsApp message directed at me for the very first time)?
“I don’t get much money from royalties!” – Are you saying that since you do not get ‘much’ money from royalties, so I have to help you attain the ‘not much money’ for no other reason than you desperately need to hog the ‘not much money’ all to yourself? Or are you saying that my contribution is not worth / does not deserve even a small tiny percentage of your ‘not much’ money from royalties? Are you so lacking in empathy and etiquette that you do not see the significance of this?
“I’m doing this to help your community!” – Are you saying that I must be so grateful that you wish to help my (autistic) community that I should contribute to your pet welfare project with the same altruistic passion that you have for it?
Let me offer up two similar experiences I’ve had with authors asking for contributions from autistics for their books, with markedly different end results after I explained why they ought to offer some gesture of sincere appreciation. (I turned both parties down, so I have no vested interest, besides, I much prefer to write my own book – and when I do, I’ll most definitely give due respect to contributors, if I ask for any.)
- Autism Author Mom: “I am not making any money at all from my book!”, then a blank wall. No offer of percentage of royalties, not a gesture of appreciation apart from giving one of the contributors a copy of the published book.
- Autism Author (who claimed to also be autistic yet undiagnosed): apologised profusely and decided to offer a percentage of royalties to each contributor (because she did not have any money to pay contributors).
What exactly is all this about?
So much dissonance. How is this even possible? Yet, large as life, and sometimes extra larger than life itself, they actually do exist. And here is the proof, in case you’re wondering if I (and countless other Autistic adults) have dreamed this up in some kind of Worldwide Mass Hallucination session.
The following comments were made on my Official Facebook Page by one and the same person in the same thread, one easy breath after another:
And I am placing here a reply from my friend, James Chan, a young Autistic adult, with his permission, because I did not, and still do not, yet have better words – or any words at all because I am too wearied and exhausted – for a response. (The Autism Mom author of the above string of dissonance deleted her thread soon afterwards, for reasons known only to her.)
Interesting views. However, I would like to say some things in response.
My views are independent from what Dawn may think about this issue.
When you say that Autism should be a “way of living”, it sounds encouraging initially, but is ultimately contradictory to the kind of inclusion you are alluding to that you support: and that is the idea that to think, work, communicate and act as an autistic person is a choice.
It has been often said that all human beings have needs, and all human beings have strengths and weaknesses, and that these things matter when we think about what we can do with our lives in terms of work, and our personalities which matter where socializing is concerned for one, and also how to find the resources and the aids we need to satisfy our needs.
Instead of seeing meltdowns and challenging behaviours as an attempt of autistic people to communicate and explain how upset and unsatisfied their needs are and how others are at a position to uplift one another by addressing these needs and thereby addressing the behavior, we have found it much easier to take meltdowns as a tragedy that is our children, that it is the unmitigated hallmark of autism. We have sidestepped taking time and effort to well and truly understand our children, accepting their legitimacy to be as themselves as human beings and letting them explore and learn on their own terms, and instead we take their meltdowns – their way of communicating their pain and lack of the understanding of their needs – and turn around and betray them by showing others that that is a definition of autism, rather than accepting we have fallen short of understanding them and addressing their needs that put them in the position in the first place.
What is most saddening is we have taken the opportunity to define autism for OURSELVES, through our lens of comparing them to other people without the same kinds or complexities of needs, and showing how upsetting or broken we think our lives are, when autistic people are singing to a completely different tune on this.
This explains the fundamental divide between parents/caregivers and autistic people – and that is parents/caregivers refusing to admit how they compare themselves and their children to others without the same needs and challenges, and thereby attempting to disconnect the idea of their children and what it means to be autistic – by thinking of it as a “glitch” or “problem”, rather than a set of needs which do result in challenging behaviours, especially when we refuse to admit we have been ineffective in meeting.
We are at a position to choose how we fundamentally see our children, particularly not as broken children, but as children who have the right to be themselves and to live, perceive and learn through the ways they were made to be, and therefore given the tools, resources and teaching under the understanding that their way of learning, communicating, understanding and regulating is okay and even correct.
Peer pressure is strong, but I think we should be ashamed of ourselves for falling to it, while autistic people are desperately trying to communicate to us and lead us to see the world in new, more beautiful ways which are not bound by societal expectations or an arbitrary behavioural rule book engineered by what others do and gravitate towards. Why are our views of our people dictated by the pressures of society? Shouldn’t we rise above it as parents, caregivers and a community by ripping this rule book in two, and be a light shining towards a future that celebrates diversity, in the midst of the darkness of unfair expectations?