*The images used in this post are of Privilege Denying Dude. You can find out about him at Know Your Meme.*
Earlier this week, Autism and Oughtisms (who I've referred to as A&O from now on) published a blog post called The Privilege Game and as I read it I found myself disagreeing with most of the content, or at least my understanding of that content. It made me want to write an outline of my own personal views on the topic of privilege so I have basically used A&O's blog as a springboard from which I have done a running dive. Feel free to jump in yourself and share your thoughts in comments.
Privilege as a very real phenomenon
I'm genuinely unclear on A&O's view with respect to this. Having read the post I initially thought it was arguing or implying that privilege doesn't exist – the mention of “apparent” and “supposed” privilege for example, and putting the word privilege itself in quotation marks. Then in a reply to a comment on the post from an autistic adult, A&O stated:
“Does privilege exist? Yes. Is it important to recognise and be aware of it? Yes.”
What I am clear on is the fact that privilege is very real and sadly, it has extremely profound and sometimes deadly consequences. Here are just a few examples for you to consider:
- Being not-autistic gives me a built-in advantage when seeking fairly compensated employment. In 2009, the U.S. Department of Education's National Longitudinal Transition Study (NLTS2) surveyed 11,000 young adults with disabilities. They found that the proportion of young autistic adults who had a job was far below the proportion of their peers who were blind, learning disabled or had been subject to traumatic brain injuries. Those young autistic adults who did have a job earned much less than other disabled young adults. (Note, this is not in comparison to neurotypical peers, it's a comparison against other young adults with disabilities).
- Men can be certain that their marital status will have no impact on their earnings from employment. The gender gap in the U.S. in terms of pay is still huge, even accounting for other variables. For example, single women earn only 57 cents for every dollar that a married man earns.
- White people can, on balance, expect to be treated fairly by the criminal justice system. An Amnesty International report, published in 2003 found that in the U.S., “[e]ven though blacks and whites are murder victims in nearly equal numbers of crimes, 80% of people executed since the death penalty was reinstated have been executed for murders involving white victims.”
- Neurotypical individuals can be assured that they will not be abused, tortured or killed by virtue of their neurology. I've written before about the extent to which mental disabilities and mental illness can result in disproportionately inhumane treatment.
- Female foetuses can be at greater risk of being aborted and female babies are at greater risk of infanticide. The average sex ratio at birth (SRB) is estimated at 104 to 106 boys born per 100 girls. In India the SRB can be as high as 120 and in some areas of China, over 130, data which supports the hypothesis that sex-selective abortions continue to be widespread, even though they are illegal in both those countries.
- A straight adult has the right to marry their partner, regardless of where they live. The impact of discriminatory legislation like bans on same-sex marriage has been shown to result in increases in depression and other mental health disorders, as well as increased alcohol abuse amongst the lesbian, gay and bisexual population. This in turn puts them at increased risk of suicide.
This is just a handful of illustrative examples; empirical evidence abounds confirming the existence and effects of privilege.
So what the heck is privilege anyway?
Privilege occurs whenever a group enjoys unearned social, economic, political and health advantages or rights. Men are privileged in relation to women, white people are privileged by virtue of their skin colour, typical people are privileged in comparison to those with disabilities, hetero-centric norms put the LGBT population at an automatic disadvantage – I'm assuming you're getting the picture.
One of the reasons privilege is such an insidious phenomenon is because, almost by definition, privileged individuals tend to be unaware of their privileged status. I'll give you an example. I used to work for what was then the world's largest professional services firm (fancy name for accountants). A course which was compulsory for everyone to attend was “Men and Women as Colleagues”. When I took the course one of the men in my group was an audit partner who was also, incidentally, a really nice man. I'll call him John. He said out loud what many men in the room were wondering – “why, in this day and age, is this course necessary, let alone mandatory?”
John was simply unaware of his privileged position – he hired women, promoted women, worked collegially with women, he didn't indulge in any overtly discrimatory or sexist behaviour – where was the problem? Over the day-long course we discussed both data and anecdotal evidence illustrating the many ways in which men were in a privileged position at this firm. Examples included: the fact that in the Canadian partnership, 50% of new hires were women and yet 100% of the partners were male. Business was conducted in bars, on golf courses and during hockey games and women were often not invited because the assumption was that they would not be interested in attending these events. Women were siloed into 'soft' positions like human resources and required to make choices with respect to relationships and children that men weren't expected to consider.
Peggy McIntosh has written several papers on white and male privilege which someone used to create The Male Privilege Checklist. The last item listed is possibly the most important part to be aware of when discussing this phenomenon:
“I have the privilege of being unaware of my male privilege.”
Why is privilege relevant?
The lack of awareness when it comes to our own privilege is precisely why we need to keep it at the forefront of our minds. Being told that you're privileged is not some sort of coded insult, it's a useful reminder of something that, by definition, we tend not to be consciously aware of.
I view privilege as the quintessential elephant in the room, because, as noted in the examples I listed above, it has an enormous impact on our lives – from birth to death and everything in between, and yet it's so often something we simply do not see. I live in one of the most multicultural and racially diverse cities on the planet. And yet unlike Rawle Maynard, I don't automatically fear the Toronto police. Because I am white I can never, and will never know how it feels to be stopped for just driving a car. Every single day I enjoy unearned advantages simply because I was born a particular skin colour. There are things I will never see, feel, know, experience and most importantly, may not even be able to imagine.
So, as a white person, if a black person points out to me that I don't understand the racial implications of something I've said – I don't reflexively accuse them of trying to silence me. I acknowledge the elephant in the room that is my privilege; I listen, and where appropriate ask questions to try and ensure I understand what they are attempting to share. I don't perceive them as attacking me for my privilege – why would they, it's something I have no control over – I recognize that I'm being made aware of something I was previously blind to.
A&O makes the point that parents of autistic children are a marginalized group (vis a vis parents of neurotypical children) and so when we are told we have to:
“give up our voices each time and seek permission and verification from autistic adults when we speak [this squashes] us from two directions at once. We are squeezed out of the narrative, unless we tow the party line, in which case we’re welcome to the podium.”
Earlier this week The Stir published an article called 10 Biggest Myths About Autism From Moms Who Know. I'm not being disingenuous here, when I saw the title of the article I truly thought that it would be about autistic mothers. The mothers who contributed to the piece were actually allistic (i.e. not-autistic; thanks to Yes That Too for introducing me to that word) mothers of autistic children. Many people, including some of the contributors, commented after the article's publication that the voices of autistic mothers should have been included. Some allistic parents found that notion upsetting and threatening, but if a journalist was writing an article on issues facing women in the workplace, wouldn't we find it pretty bizarre if he interviewed gay men for their insights? I suggest to you that we'd find it even stranger if the journalist defended his decision to solicit the views of gay men by making statements like:
- well, gay men are a marginalized group in relation to straight men
- two of the men are actually transmen and so really, you know, they're women
- several of the men interviewed were actually fathers of working women
- the magazine I am writing the article for is one read predominantly by gay men
- but women themselves don't even agree on whether there is sexism in the workplace
- why are we trying to silence gay men when it comes to this issue?
To me, it's a simple concept – when it comes to autism, the voices we need to listen to are those of autistic people. Women need to be in the driving seat when it comes to issues affecting women. Let's not try and learn more about racial inequalities by asking for the views and input of white people.
The Toronto Star recently published a series of articles under the heading 'The Autism Project'. The articles focused on parents of autistic children, teachers and therapists, as well as scientists researching the causes of autism. It was a classic example of privilege at work – autistic adults were finally interviewed, but only at the end of the project. Parents of autistic children aren't being “squeezed out of the narrative”; for the most part we continue to provide the narrative when it comes to autism.
Parents do need to be listened to and involved in the conversation when parenting issues are under discussion. No-one I know is actually trying to silence parents, especially when it comes to the issues they face in parenting their own kids. And no-one knows your children better than you do (apart from your children themselves). I have a voice as a parent and in that context I have a right to be heard. But my voice is not and never will be an autistic voice or a black voice or a male voice or a gay voice. When it comes to autistic, black and gay issues, it's their voices I want to hear, not mine. In those situations I don't want to listen to those who have privilege, especially if they're denying that their privilege even exists.
When people have been abused, silenced, disenfranchised, locked up and even killed, just because they're autistic, when we become consciously aware of all the advantages allistic people enjoy but have not earned, then in relation to issues about autism it really is time for us to stand aside in favour of autistic people. Becoming aware of and owning our privilege involves consciously giving up our power in order to empower others – otherwise we're just continuing to ignore the elephant in the room.
In practical terms, what does this mean for me as a non-autistic parent of an autistic child?
I'm going to answer this by breaking down A&O's answer to this question:
- “Because of our privilege, we non-autistic parents of autistic children, are meant to make way for the voices of autistic parents and autistic adults;” Yes, in relation to issues about autism, most emphatically, yes. Don't ignore the elephant in the room.
- “pass them the speaking platform when it is offered to us,” Maybe. If a journalist asked me what it's like to parent two autistic boys when I'm not on the spectrum myself, I'd feel qualified and comfortable answering that question. If someone asked me for my views and experiences regarding the placement of exceptional children in the Toronto District School Board, or about the year-long waitlist and the process required to get an Assistive Technology evaluation, I'd share my views and experience. If however I was asked to comment on what I believe the main policy priorities of the Ontario government should be in relation to autistic Ontarians, I'd happily pass the speaking platform to an autistic adult.
- “and give [autistic adults] the ability and position to verify our own views as correct and acceptable.” I've never been asked to submit my blogs or any other writing to an autistic review board.
- “Their views take primacy, and must always be heard over and above our own.” When it relates to explaining and understanding autism, providing insight with respect to the daily disadvantages faced when you have this developmental disability and opinions about how those disadvantages could best be mitigated, um, YES, autistic voices must and always should be heard over mine. When it's in relation to welfare policy during the Clinton administration – well, I wrote my Master's thesis on that topic so let's have a debate.
One of Oliver's favourite shows is Blue's Clues. In one of the episodes Mr. Salt and Mrs. Pepper are discussing with Steve what to do when you become frustrated. Their mantra is 'Stop, breathe and think' which Oliver uses himself when he gets worked up – it's pretty cute. The best piece of advice I can give you if you're an allistic person and you find yourself getting frustrated when talking with autistic people is a variant on Steve's mantra – stop, breathe and listen. See the elephant in the room.
I wonder if you tried speaking with the author of that post or commenting over there? Have you let her know that you are discussing her post here?
I suspect her views and yours are not really that far apart.
Hi, thanks for commenting. I didn’t comment over there because the vast majority of what I had to say isn’t really a direct riposte to the A&O piece, it’s more an outline of what I think concerning privilege. However, as I did refer to and quote that post, as a courtesy I did comment letting her know. I assume she’ll get a pingback but I did leave a link there just in case.
Excellent post, passing it along
Is it privileged to use being blind as a metaphor (you did in this post) when not referring to actual blindness or blind people? Or to women who are male-assigned-at-birth as “pre-op men”? Being transgender and wanting to have a sex-change operation but not having had it yet doesn’t make you a member of the gender with which you don’t identify. Now you could PASS for that gender (i.e. be male-presenting) and thus experience some of the privileges associated with being a man, but you’re not a man if you don’t identify as one. Like I can experience some aspects of neurotypical privilege while I’m passing, but I’m not neurotypical.
I’m not trying to be that obnoxious person, because overall, I thoroughly enjoyed this piece and think you did a wonderful job explaining privilege. I think another important aspect of privilege to acknowledge is that the fact that you’re a non-autistic parent means that when you write (even about privilege), infinitely more people will listen than when I do. On the one hand, I hope that that means that people who need to read this who wouldn’t listen if it were being said by an Autistic will read it here, but on the other hand, this saddens me that it will not be heard or spread so much as when I or other Autistics say it.
Thanks for pointing this out, Lydia. I noticed the trans issue as well. I’m glad you discussed it very well and without insulting the author personally, because I agree: The author did a very good job, overall, explaining privilege.
As an autistic adult, I have been invited to an event to raise autism awareness once, as a supporter of children with autism. However, I see these events happening all around me. I do attend some of them without being invited, as I’d like to show my support for Autistic people, be they children or adults.
I feel as though my body has been hijacked and my voice replaced. “Autism” is not a condition I have. It’s *part* of me. It makes me who I am. You would think that would qualify me to speak about my experiences in order to help others.
While I’ve been told over and over again that there are already enough voices shouting about Autism, I’ve not heard many that speak from a place of inner knowledge. I’ve heard medical professionals, parents, siblings, etc, (which are all very important voices, by the way. It’s important that family have support from other families, and to have medical advancement) but one day those children will be adults, like me, and they won’t have the voice of other adults supporting them.
Privilege is a topic near and dear to my heart, as someone who has to study human interactions in order to be more aware of social behaviours. Privilege was so interesting to me when I discovered it. I discovered it by listening to those around me who did not have the same experiences I did with authorities, services, and the like.
I think the best thing we can do is listen to people, which is hard, given what you’ve said about voices and of course what the author pointed out as the very nature of privilege.
So thanks again to both you and the author for your insights. I really appreciate your voices.
Lydia, thank you for taking time to comment as I know how busy you are! With respect to the transgender issue, thank you for pointing out that the example I used gave the impression that transwomen shouldn’t have a say when it comes to women’s issues – not my intent. The blogger at Yes That Too came up with a brilliant alternative and I have edited my post accordingly. With respect to the issue of using blind as a metaphor, I’d love to discuss that more offline, if possible. As to your last point, it saddens me too, very much.
I have a sincere question. If I, as a neurotypical parent, seek advice regarding care for my autistic daughter, am I – in the context of that conversation – privileged because of my neurotypicality? I am being neither argumentative or facetious in asking this. I would genuinely like your opinion and to understand why you have that opinion.
So you understand my sincerity, I will tell you that I ask this, because I think there are two broad categories of conversation going on the blogosphere (and I appreciate that this may be an oversimplification): conversations about what it’s *like* to be autistic and conversation about what it’s like to raise an autistic person from infanthood to adulthood. Though I cannot as yet articulate it well, my instinct is that there is a dichotomy of privilege that might be defined by those two perspectives. Alternatively, the question of “privilege” is simply to large to be defined by NT v. autistic because variables within variables may balance or unbalance any given equation.
http://sfourselves.tumblr.com/post/41538139058/im-a-person-not-a-self-narrating-zoo-exhibit-the
(I know you weren’t asking me, but…)
sorry, but yes. you are definitely privileged in that situation. the link is to something I wrote on this subject of privilege in that specific situation.
and (going with your simplified model) the problem is that most people only know of one of those conversations. the parents conversation is the only one I’ve seen on TV (I live in the UK, I know Ari Nee’man has been on US TV) and whatever happens in obscure corners of the internet, any mainstream public sympathy will be with NT parents of young-enough-to-still-be-cute autistic kids, not with us. this doesn’t mean you live a charmed existence. it doesn’t even mean we blame you for this crap. it just means you have more power than we do, please be careful how you use it (even if it’s only scraps of power).
I also have quite a lot of privilege compared to other autistic people. it doesn’t invalidate my experience, but it means I have to make a special effort not to make things worse for people who don’t share that privilege.
Hi OMum22,
I want to start by saying that I really appreciate that my post got you thinking further about privilege, and writing about it too, it is an interesting and complex topic!
I have been disappointed at the number of people who have misinterpreted or misunderstood my words in my post. Whether my post was too complex, or poorly written, I’m not sure, perhaps a mix of the two? Many did get exactly what I meant, so I’ll take some comfort in that! But I appreciate the chance to clarify anyway, so here goes:
Yes, I absolutely think privilege exists. My issue was when people overlook the relevance of the social model of disability, ignoring or underplaying the relevance of other factors in the experience of autism, which is NOT the same as denying privilege; I’m merely saying it’s far more complex than some linear comparison.
A (perhaps the) major point in my post, the point I reached towards the end, was that I dislike the use of privilege as a simplistic ad hominem argument. I want people to think about what is written, not just the author. You seem to have missed the part in my post where I referenced my earlier post on when an autism diagnosis is directly and centrally of importance to an argument. In the privilege post I ask people to keep in mind that an argument is not simply about who is doing the argument, and we should be wary of dismissing arguments in this manner. Perhaps click through to the link I provided in my post to see what I was driving at, it should help.
There are some points on which you and I disagree, sure, but I do not think they are drastic differences, just differences around what should be DONE about the positions of privilege, which – though relevant – was not actually central to what I had to say. There is room for debate about whether the internet is a finite ground of platforms and opinions (I don’t think it is), and whether the sound of one voice necessarily drowns out alternate views (I don’t think so, I respect diversity of views and hearing about all types of experiences). So that’s fine, debate there is healthy and welcome, but please don’t take me as saying non-autistic people simplistically lack privilege, there were many places in my post where I asserted the exact opposite (even directly about myself).
I hope that helps! I’m happy to discuss further if you want.
Best wishes,
A & O.
I’m hoping the author of this blog will respond to the A&O’s reply here. I think she has clarified her perspective respectfully, and I would think an acknowledgement of her points would be appropriate?
I ask as I am curious because as A&O says above the differences in your respective posts are fundamentally “not drastic”.
regards
I am replying to all the comments left on my blog as and when I have time.
Sadly for all the author said Privilege was real in that comment, she definitely doesn’t really believe she herself personally has it. For her it is something other people have judging by her words in the post and in the comment. Notice she doesn’t say “Yes, and I have it”. She just says it exists.
She also apparently thinks that having privilege shouldn’t require anyone to step back, to make room for, or to actually listen to minorities. That’s basically her argument, that saying “you have privilege and should listen” is just the same as actually being oppressed.
Sadly given the rise of social justice rhetoric there’s been a lot of privileged people who take our terms and weaponize them against us. Whereas before they would have argued that privilege does not exist, now they argues that it does but they don’t have it. Before they would have argued that their life sucks and they don’t have privilege, now they argue that that they are also oppressed. I could go on but you probably get the idea.
You may not want to engage with her btw, when I tried to explain that she was engaging in denial of the power dynamic inherent in her position and reality of allistic privilege in a way that was quite harmful for autistics. She aggressively dismissed me and tried to invalidate my viewpoint by arguing that I “didn’t understand” and “didn’t know her”, then labelled me inappropriate for continuing to ask her to listen and to understand why I saw her post that way.
Eighteights, you personally attacked me on my blog, you even dragged my son into it! You also attacked other bloggers who had commented on my post, quite unfairly and again, in a very personal manner. Then you called me a butthead on twitter. Please just stop the attacks! It’s so un-necessary! You keep saying I don’t think I have privilege, but I said on my post, I said in the comments, I’ll say it again: I have privilege! I never once denied it! I said I also have disadvantages though, as do we all. Privilege is very complicated, as I tried very hard to convey on my post. I don’t know why you are so determined to have a go at me, it really is so completely un-necessary and unjustified. I don’t wish to engage with you further because of the hostility I’ve received from you already, so I shall not reply to you again on this thread. I will just plea with you, one last time, to stop claiming I said I don’t have privilege and don’t believe in privilege, it’s simply incorrect, and I’m getting tired of repeating myself.
Your idea of the truth is extremely flexible.
Your idea of an “attack” is “didn’t let me be horrible without pointing it and the harm it does out”. You are a perfect example of the problem many autistics have with allistic parents, the pearl clutching “omg criticising the horribly shitty things we said is an attack” inability of some allistic parents to listen if there is even the slightest suggestion that an allistic parent is acting improperly, being ignorant or harmful.
I was very nice, despite your abuse of me, your attempts to invalidate my viewpoint and you leveraging your privilege against me, demanding I give way before your privilege and then when I refused to do so, you proceeded to lie about me and continue to do so.
The claim that I called you a butthead on twitter is a flat out lie. If you’re going to make up stories at least make them believable.
Why don’t you stop? Why don’t you stop and listen and think about why people are saying to you that your post is coming across as privilege denial and hurtful to autistic people? Why don’t you actually try to be the person you claim to be instead of merely going into full on denial mode when anything comes up that suggests you might be falling short of what you think you’re doing?
I’ve met so many Allistic people like you, who are too busy believing they’re a wonderful ally to check their privilege and to actually be a wonderful ally.
Stop acting like you don’t have privilege and talking as thought you don’t have it then if you don’t want to be seen as doing so. Stop arguing that allistic parents don’t have privilege. Stop complaining about how it’s unfair to privilege the voices of actual autistic people over people who aren’t autistic. Stop complaining when people point out your privilege. Stop trying to keep the status quo, which is your voices all the time and ours none of the time.
Stop twisting social justice ideas and weaponising them against minorities. Stop playing the victim. In short stop being a problem and start being an ally.
People point out your privilege and take it into account when processing your opinion because you, yes you, do not check it, do not consider it and most certainly don’t appear to be working to mitigate it. Consider this a moment when you can either continue to be part of the problem or start moving toward being part of the solution for once.
I found the A & O piece interesting reading, and I find this interesting reading. Of course privilege exists. But yes, it shifts and changes according to the environment.
When I read the A & O piece, and most subsequent comments, I didn’t see anyone denying that privilege exists, or that non-autistic parents are heard in venues in larger society that are not open to autistic people. But I did read that in some discussions online that it feels like a person’s privilege is used to discount their perspectives. That the fact of being a parent invalidates our viewpoint in some discussions.
This lack of being heard is a small thing as compared to what autistics face in larger society. I get that. In this very small way, parents are experiencing what autistics experience as a matter of course in their daily lives. Why wouldn’t autistics want to shut down the voices of people who have shut them down so often in organizations meant to advocate for them? This is understandable, even if it doesn’t feel good.
I will post more in a bit after I read other comments.
I decided to go back to A & O to respond with my concerns to the commenter at that post.
This division within the autism community is so frustrating, but not much different than similar divisions I see in other communities. As an adult adoptee I’ve watched the circular argument go ’round and ’round and round again…and I get so much of what NNT’s are saying to allistic parents: We grew up with this experience and we have a lot to say about treatment plans and behavior therapy and all the things we were forced to participate in. We have a lot to say about what the goals of IEP’s should be; we have a lot to say about what allistic people need to be aware of when it comes to the autism community.” But just as in the adoption triad, the voices of the birthparents and the adoptive parents also need to be heard. What I read in the Autisms & Oughtisms post was a frustration on the part of an allistic parent over dealing with voices in the autism community that believe allistic parents of autistic children ought to have no voice at all. There are people who believe we should be absolutely silent in the world of autism advocacy. There are autists who believe that any program that seeks to mold the behavior of an autistic person to be more socially acceptable is simply not ok.
I understand the drift of this argument, but I find myself frustrated at the black and white nature of these arguments. For instance, my eight year old son with autism has difficulty with becoming violent when his anxiety or his sensory disorders kick in. In his classroom last week he kicked and hit another student because the other student is unable to control his verbal tics. Our goals for my son are to help him learn how to manage frustration or emotional upset without hurting others. I cannot see how helping him with his behavior in this regard is somehow harmful to him or fails to recognize his inherent rights as a person with autism; if he is going to ever be an independent adult, he needs my help NOW in learning to manage his own behaviors. Today the worst that happens is a one-day suspension from school — if he persists in these behaviors as an adult he will end up in jail, and I don’t understand how that will be anything but horrible for him. Yet extreme voices in the autism community would “liberate” my child from me because I want him to learn how to control his violent impulses. Perhaps they don’t really mean this exact situation when they say what they say, but I feel compelled to point out the holes in the argument that allistic parents cannot advocate appropriately for their children with autism. Should the voices of autistics have great weight in the conversation around autism? Absolutely. Does an autistic person know better than I what it means to have autism? Absolutely. Should an autistic person who has never met my son have more to say about what he does and doesn’t need than I? No. And yes. And no and yes.
I don’t think the poster at A&O misunderstood or misspoke about her understanding of privilege, nor did she fail to notice that as an allistic in the autism conversation she does have privilege. What she was addressing was more toward the concept that allistic parents should be silenced in that conversation. And when she disagrees with that idea, I disagree right along with her.
BarnMaven,
As far as I know, nobody has ever suggested that the allistic parents of autistic kids shut up entirely. Just that allistic parents need to step back a bit, stop dominating the conversation, give us some room as well and listen when we ask them not to do things that are harmful.
The whole “autistics want parents to shut up” claim is based on very privileged parents who basically think that allowing any other voices whatsoever into the discussion is “silencing them”. They treat it as a zero sum game, either they get it all or anything they don’t get is branded as silencing them.
I’m going to explain something because from what you say, you don’t really understand meltdowns yet and seem think they are something that can be handled in the way you would tantrums, by training your son to behave in certain socially acceptable ways.
Meltdowns aren’t like tantrums, they are not behaviour or impulses, they’re what you get when an autistic just cannot cope anymore, the time to stop the problem is before the meltdown, not during. If the meltdown has started, it is too late to exert control. That means talking to the teachers about what can be done to prevent overloads for him in the classroom not just trying to control the resulting meltdown once an overload has occurred. Your son is eight, I know no autistics that can or could control an overload once triggered at that age, so prevention is as much part of helping as anything else. I’m an adult and I struggle to control mine especially when triggered by persistent people who keep on crowding me.
I can’t say what an overload is like for your son, I can say what it’s like for me which might give you an idea. It’s overwhelming, often sounds become sheer nonsense, and it feels like your head is going to explode. You literally cannot think because all this stuff is pressing down on you, it’s like being smothered in information. It’s like your higher functions just lock up from everything and the primitive part of your brain takes over and it just wants the horrible thing that is hurting you and that you can’t understand to go away so you can breathe and actually think again.
That is not something you can really train someone out of so the best option is to prevent it if you can instead. That means learning to recognise the signs of imminent overwhelming in your child and teaching the teachers to recognise them as well, also helping your son to communicate when he’s becoming overwhelmed to the teachers and to you if you don’t see he is. It means finding a way to let him unwind and reset his tolerance level. A quiet corner, a set of noise cancelling headphones, an Ipad, excetera, whatever works for him. I myself like music.
As your son grows older he will need your support to recognise what triggers his meltdowns and make his own efforts to handle avoiding meltdowns, including advocating for himself if someone tries to force him to stay with a trigger. Also meltdowns? While you hear about the few autistics that remain violent as adults, meltdown reactions do often change with age, so your son might well manifest meltdowns completely differently when older.
Please understand It’s not just about us adapting to the world, the world needs to adapt to us as well, that’s why we have this notion called appropriate accommodations. It covers things like the Ramps I use with my wheelchair, and people helping me away from meltdown triggers.
I am quite aware that the meltdowns my son experiences have an antecedent and that the best way to help him is to help him identify triggers and what happens to him before he can’t cope any more — the end result is twofold — my son doesn’t have to suffer so in the first place, and he also doesn’t have to suffer because he was not in a position to control his physical reactions during a meltdown.
Please don’t patronize me.
Then why Barnmaven do you insist on calling it a “behaviour” or an “impulse” when it is neither? A triggered individual is not the same as an individual behaving badly. I read through your blog, there’s a number of times where you are clearly struggling to understand and putting all the onus on your son to conform rather than realising that he needs an environment conducive to him as well.
One minute you seem to get it, the next you say something that reinforces problems and stereotypes. If it is patronising to point that out to you, you might want to do more research so nobody will feel the need to do so.
Hi,
I have many things to say. I hope I can get them in a vaguely sensible order. I agree with everything in this article (and plan to post it on the SfO tumblr page if you don’t mind), but I’d like to add bits that, as an NT, you might not have felt able to discuss. (I also read the privilege game, and didn’t like it)
but firstly, me & my position: I am a queer (biromantic asexual) Autistic woman living in the uk.
me & my ex recently started an online project to record Autistic peoples everyday experiences of prejudice (shameless plug: if you have a story you’d like to share http://speakingforourselves.weebly.com/ ). which lead us to have some… I’m going to say discussions…. about privilege in autism advocacy.
I mention my sexuality because a lot of the discussions I’ve been involved in around privilege have happened in queer spaces, and the issues are transferable.
me & my ex do not have the parent privilege discussed above, but we have many other privileges (we’re both white, for example), and there is a whole mess of privilege/oppression that is Autism specific. we’re both:
officially diagnosed (self diagnosed people can be easily dismissed),
“high functioning” (I prefer “user friendly”, who are we functioning for anyway? but it does mean we can pass for NT well enough to be seen as real people)
female bodied adults (my ex is actually genderqueer) which means people question our existence
there are other things, but I think my point is that *as an Autistic Person* I also have to check my privilege(s) where I have a (small) platform to express myself. we all need to do this.
the main issue I have with “the privilege game” is that pointing out to me (or others like me) that we have privilege too is not an “autism parents” place. when someone has privilege (which, as both posts said, everyone does at some point), and it is pointed out to us, all we can do is acknowledge it and try not to do whatever we were doing wrong again. the response “you check your privilege first, here’s a list of reasons other people are more oppressed than you and another list of people who don’t experience my oppression” (which just about sums up the privilege game) silences the listener and doesn’t leave room for the speaker to learn.