The Privilege Game

Non-autistic parents of autistic children, are apparently privileged. What does that mean, and why does it matter? And does it really justify silencing and attacking us, as seems to have become a popular pass-time for a few autism bloggers?

By TheFutureIsUnwritten

“Privilege” here means that we’re in a position of power, particularly as relative to other autistic adults and autistic parents. We live in a world where being not-autistic is some sort of advantage, a world where our voices as non-autistic parents is apparently already strong.

Whether that is true or not, is one question. The second part of the question is what this supposed privilege entails or justifies.

The argument I see coming through the most often when privilege is cited, goes like this: 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; pass them the speaking platform when it is offered to us, and give them the ability and position to verify our own views as correct and acceptable. Their views take primacy, and must always be heard over and above our own.

Whether that is a reasonable and defendable response to privilege (imagined or otherwise) is also debatable. But first, are we really in a position or power and privilege, relatively or otherwise?

Clearly, parents of autistic kids are in a position of weakness and lack of power when it comes to society and particularly to the parenting world. We go largely unheard and ignored in the mainstream world, and we have to fight for basic rights to health and education for our children in a way that other parents rarely understand or encounter. Our lives are typically exhausting, under-resourced, and misunderstood. So when it comes to writing or speaking about parenting, we are not in a position of privilege at all, we are the ones who need to be facilitated and heard.

What about in comparison to autistic adults and autistic parents; are we non-autistic parents not “privileged” in comparison to them? The superficial answer is yes. However, this is not always the case. Is a Maori, lesbian, physically-disabled, non-autistic mother, privileged when compared to a white, male, heterosexual, autistic father? The obvious answer is no, but there is a potential reply here: That in the context of talking about autism and raising autistic children, the non-autistic individual remains in a position of power and privilege because autism is largely understood and defined already through the non-autistic viewpoint. However there is a major consideration about the nature of disability that I think goes under or unappreciated here.

Very often the rhetoric of privilege and power goes hand-in-hand with the notion that disability is a socially defined construct (in preference to the medical model of disability): Both “privilege” and the social definition of disability, come from sociological roots (and routes) of understanding the world and our interactions in the world. Here’s the problem then: If disability is a social construct, then how you experience something like autism is hugely informed by your position of wealth, your ethnicity, your nationality, your gender, and a lot of factors completely independent of the condition of autism, since they are used to define and construct disability. Therefore, when talking about experiences and realities of living with autism, it would always be relevant to consider those other factors at play, so the question of privilege becomes much for complex than simply “does or doesn’t have autism,” even when simply discussing autism.

So, if this is true, then those with autism who are not-poor/white/ heterosexual, would have to be ready to give up their own speaking platforms and verify their own view-points in relation to autistic people who do not have their privileges (if this is what we think privilege requires; giving up speaking platforms and verifying our views and understanding by running them past those who have the deeper and more genuine understanding). At which point you really are stuck, because society is full of comparative privileges that impact on how we experience and understand things; we all carry around various impactful privileges, particularly when it comes to something like autism where the experience and understanding of it is so very much informed by other societal considerations.

Let’s make things “simpler,” and accept that autistic people (particularly autistic adults) better understand autism than their non-autistic counterparts, because they themselves have autism. First off, we need to be clear that who does and does not have autism is not always quite that straight forward, many parents of autistic children do themselves have autism or autistic traits, that give them the relevant insights. Some are diagnosed some are not, they do not and should not have to tell everyone their “autistic status” in order to be heard, at the very least one should not assume the parent who is writing is not autistic, as so many people do assume.

Let’s simplify it even further then, how about purely non-autistic parents, surely they do not have the insights into parenting an autistic child that an autistic parent does. Again, I don’t think this follows well, because autism itself is so various from person to person, in both intensity and even symptoms (though the new DSM-5 should help clear that up a bit); raising a severely autistic child is not the same experience as raising a mild one (I should know, my son has moved from one end of the spectrum to the other, they are extremely different parenting experiences on multiple levels).

What about the deeper understanding that comes from having autism inside you, quite apart from the actual parenting experience, surely that matters more and the most? There’s a problem again: There is no consensus on view-points on autism amongst the autistic either. There are a huge variety of perspectives on whether autism is great or a curse, is easy or hard to live with, from the very people who have autism; views that vary just as much as those held by non-autistic parents of autistic children. So unless we want to say these people are wrong and inauthentic, we need to allow for that variance, and if you’re going to allow for that variance which often sits alongside the exact variance you see in parental viewpoints too, then why silence or belittle the non-autistic parent viewpoints? Just because they have “privilege?”

Here’s what this actually comes down to, because this is what I see all the time in these discussions: “It’s OK to speak from a position of privilege if you agree with us.” If you disagree, you are expected to be quiet and make way for the “genuine” voices. Who are “us”? Whoever currently thinks they are the most enlightened; it is not defined by group membership per se, but by conforming to a particular view-point. This impression has been strongly reinforced due to the number of times I have seen the attack shift once someone finds out the parent they’re having a go at is indeed autistic: The attack doesn’t simply stop because the argument of privilege is gone, the attack continues on new lines once the privilege argument fails. Which is to say, the key is not privilege or power, even though that is the go-to argument when our views are deemed unacceptable. It is used to shut down the discussion, to put the speaker in their place, to silence dissent.

The way I see it, when the privilege argument is used in this way, it is just an ad hominem argument: Because of who you are, your argument fails. No need to engage in premises and truths and discussion, just dismiss the view you don’t like by claiming the other person has privilege. This is also a type of discrimination: Dismissing a view and an experience on the grounds of something outside of someone’s control; their neurology. Your understanding and experience of raising an autistic child is irrelevant and wrong because of your brain. That, to me, is no different than attacking an autistic person’s views just because of their autism. We should be engaging with what the person is saying, not simply with who is saying it.

Don’t get me wrong, there are times that being autistic is relevant and essential to an argument, but we have to distinguish when it is relevant and why (I have written on this topic), because it is not always relevant, and this is particularly going to be true when it comes to writing about a unique experience like parenting. It is hard to grasp the experience and challenges of parenting if you’ve never done it. That doesn’t mean you can’t have experts on parenting or people with insights on parenting who have never done it. And by the very same token, neither does never having had autism predetermine that you can’t have insights or expertise on autism itself. The structure and premises of an argument matters; one should avoid rather than seek out ad hominems when trying to persuade others. And privilege used in this simplistic way – as a stand-alone attack – is a type of ad hominem argument.

Here’s the point then: Privilege is not as straightforward as many claim. People have many privileges, and many privileges are relevant even in singular discussion contexts (like parenting an autistic child). Privilege is an observation, a possible consideration, but it is not a winning argument. It is not grounds to silence those you disagree with. It is not even grounds to tell someone they have to give up their speaking rights to others less privileged, since there are not finite ways in this world to communicate and be heard. It is, again, a reason to think about providing more opportunities to those who may be going unheard, but it is not grounds through which to justify silencing those who are already marginalised in society – parents of autistic children. We already have to battle to be heard in the world, to tell us we must also give up our voices each time and seek permission and verification from autistic adults when we speak, is to squash 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.

The arguments to hear autistic voices – on parenting or other topics – doesn’t and shouldn’t rest on the claim of privilege and power. It’s much simpler and stronger than that. It’s about respect, it’s about being heard, it’s about hearing diverse viewpoints and experiences. Which is to say, the very same reasons that us non-autistic parents of autistic children need to be heard too. Respect. Diversity. Difference. We parents do not speak with one voice. Autistic parents and autistic adults do not speak with one voice. The argument of privilege is a distraction, a too often used ad hominem attack. It is not always relevant, and almost always unhelpful. Identify and acknowledge privilege, sure, but don’t think it’s a trump card. You want to play the great privilege card battle with me? Fine, go for it, but I carry around more privilege and disadvantages than you could imagine, and neither of us will ever convince the other on those grounds alone. The privilege game has no winner, so stop playing it.

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82 Responses to The Privilege Game

  1. jillsmo says:

    Dude. You are GOOD.

  2. Jaclyn Carty says:

    this is a good way of breaking it all down. I was reading it thinking”what if you’re a parent whose not autistic but not at all “normal” , and I have a husband who rocks, and that subject was next. thanks for your insight.

  3. Sharon says:

    I love your brain. This rips apart the simplistic cry of privilege to silence dissent. Sharing far and wide. x

  4. seventhvoice says:

    This is an absolutely fantastic post. I have been trying to say the same thing and failing miserably in my many attempts to do so but you have absolutely nailed this argument. Parents should have the right to speak on behalf of their autistic children. The idea promoted by many applying the social model of disability that only those with autism themselves should have the right to comment on issues pertaining to autism is now and has always been a flawed one. Parents of children with autism experience as much discrimination as their children do. You are right. The idea that non-autistic parents hold any form of privilege is a misnomer of the worst kind in relation to this topic. Well done!!!!!!

  5. seventhvoice says:

    Reblogged this on seventhvoice and commented:
    I’ve been trying to say something very similar to this in many of my previous posts but I’ve never ever managed to pin down all the arguments involved in such an eloquent and articulate way.

  6. Carmen G. Halfrunt says:

    Thank you for thinking this through and for writing this. Acknowledging privilege is good. Acknowledging and including diverse voices is good. Invalidating viewpoints ipso facto “consider the source” based on subjective perception of elevated privilege is discriminatory, dismissive, and destructive to meaningful dialogue and mutual respect.

  7. Barnmaven says:

    What a thoughtful and well written response to a very puzzling and frankly disturbing trend within the autism/autism parenting community. As the mom of a child with autism my observations and opinions about my son, about his disability and his many abilities are valid. There are things I understand about my child that no outsider, even one with autism, can never understand, nor do I need their validation to have this mother knowledge of my son. Another person with autism may relate to my son in different ways, ways I cannot begin to fathom. And BOTH ways of knowing and relating to my son are valid.

    I think in some regards this battlefield plays out in so many arenas. For instance, I ride horses. Among my many horsey friends you will find ten people who think trainer A is the ONLY trainer to follow and another ten who HATE trainer A and love Trainer B. You have riders who will not learn from other schools of training and riders who are happy to take in every suggestion from anyone and then utilize what works for them. In each of these camps you will find people who think that the other camps’ ways of thinking and interacting are sheer heresy.

    Its a part of the human condition I suppose, but I would hope that as we evolve culturally that someday we will learn to leave this way of thinking behind. Sadly the people who could most learn from what you have said will likely not be open to reading your words with the thoughtfulness and attention they deserve.

  8. Rachel says:

    You are so right that privilege is a very complex thing; it’s not simply a difference between autistic and non-autistic people, but between people who have all kinds of intersecting privileges and oppressions weaving in and out of their lives.

    One of the problems with bringing privilege into online discussions is that it’s nearly impossible to tell, just by reading people’s blogs or Facebook posts, how privilege and oppression intersect for them. There are people who are very open about these things online, and others who are not open about them at all; oftentimes, the lack of openness is misread as a lack of pain or difficulty or poverty or isolation or abuse, and this misreading creates very shaky ground from which to proceed. It’s just about impossible to tell what burdens people carry, and what their histories are, and what their socio-economic/psychological/cultural standpoints are, without actually knowing them and having personal knowledge of their lives.

    While I’ve shared openly about some areas of my life online, there are things that I have not shared because it simply doesn’t feel safe to do so, and because I want some areas of my life to remain private. I know that the same is true for many others. So arguments and judgments about privilege get made with very little evidence and then conversations derail badly from there.

  9. Sunshine says:

    Testify! On the subject of advocacy, you have the right to speak on my behalf any time, ha. You connect thoughts that have been rolling around all over the place in my head and articulate them beautifully.

  10. Jennie B says:

    So well stated. You sum up perfectly why so many of these discussions have been so frustrating. I hope a lot of people see this post.

  11. dq74 says:

    Absolutely brilliant writing, as usual, from you. Thank you! Thank you!

  12. adkyriolexy says:

    I see many parallels between the “autism community” and the “adoption community.” In both cases, parents of affected children sometimes resent or deny the assertion that they are privileged relative to affected individuals (autistic people, adoptees). In both cases, parents of affected individuals point out that their parenting experience is marginalized relative to the “normal” parenting experience (raising a biological, neurotypical child). And this is true. Parents of autistic children are sometimes excluded from a general community of parents which centers on parents of neurotypical children. Adoptive parents are sometimes excluded from a general community of parents which centers on parents of biological children. This is true.

    But I would ask you, in these two cases, to think about the terms “autistic adult” and “adult adoptee.”

    How often do you hear the word “adult” in other contexts? I’m guessing not very often. In statistics, in regulations (e.g. “adults only”), in casual conversation, sometimes (“for my entire adult life…”), but how often do you hear someone described as “a [demographic community] adult”? “A gay adult”? “An Italian-American adult”? “A female adult”? It sounds strange, doesn’t it?

    That’s because “autistic adult” and “adult adoptee” are a lot like “woman doctor” or “male nurse”: the qualifier is needed because it’s contrary to the default assumption. By default, “doctor” means “male;” “nurse” means “female;” and “autistic” and “adopted” both mean “child.” Unless stated otherwise, of course.

    The default view of “autism” is “child.” The default view of “autism parent” is “neurotypical parent of autistic child.” The only reason that “autism parent” can so casually be used to mean “neurotypical parent of autistic child” is because it’s so… utterly inconceivable to most people that an autistic person can be a parent.

    The need for qualifiers tells you what the default is. The default tells you where the “privilege” is.

    In general, I tend towards the view that the “privilege” concept has somewhat outlived its usefulness. In theory, the concept is to encourage people to stop and think about all the things they’ve benefited from without noticing, to challenge their ideals of being “self-made” and to challenge simplistic notions like “anybody can be as successful as I am if they work hard.”

    But in practice, the concept of “privilege” has turned into a spiral of relatively pointless debate in which people attempt to bring up whatever hardships they experienced in their lives to justify how non-privileged they are. Nothing is gained from this.

    If “privileged” bothers you for this reason, use the term “default view” instead. The default view of an autistic person is a mentally incompetent child lacking all agency. The default view of an “autism advocate” is the parent of such a child. Autistic self-advocates are seeking to change this default. It has nothing to do with how many axes you’re oppressed by, or how many ways you’ve suffered in your life, or whether you’re excluded by parents of neurotypical children. It’s not about that. Really.

    • I agree that it shouldn’t be about that, and that’s why I wrote this post. Your points are valid and important, but my post is about those people who use the privilege claim to render other people less important and into silence. Does privilege exist? Yes. Is it important to recognise and be aware of it? Yes. We agree on this. I think we also agree on how it would be better to widen the rhetoric to better acknowledge autistic adults, and that autistic adults have gone under-recognised. I think we might also agree that this task isn’t undermined by allowing parents to maintain their voice and speak their views; the recognition of adult autistics is not in direct contradiction with the continued existence of the voices of non-autistic parents.

      Do let me know if I have misunderstood you or your concerns.

      Thanks for your very thoughtful and considered comment.

      • adkyriolexy says:

        I would say that this task is undermined by allowing parents to “maintain” their voice. Parents should have a voice, certainly. Right now, parents have much too much of one. Allistic parents’ voices are amplified while autistic people’s voices are silenced and dismissed. That is the problem. There is a finite amount of space, ink, airtime, etc., that can be given to autism issues. Increasing the representation of autistic people will necessarily mean decreasing the representation of allistic parents.

        One of the main goals of the autistic self-advocacy movement is to liberate autistic people from their parents. From abusive parents, yes, but also from kind, loving parents with the best of intentions. Few neurotypical adults would willingly submit themselves to parental authority as adults, even if their parents are kind, loving, and with the best of intentions. This makes a certain degree of conflict inevitable. It’s not that parents aren’t well-intentioned; it’s that the most well-intentioned parents still look at their children as their babies needing to be protected.

        There are really two separate issues here: on the one hand, autistic self-advocates have a problem with parent-centered narratives because of the content of what many (not all!) allistic parents tend to say about autistics: that we’re tragic, diseased, mentally ill, in need of a cure, a burden, “will never” do this or that, etc. But separately from this, there’s the fact that regardless of the content of what is said, the fact that a parent is the one saying it is a problem.

        Assuming an average lifespan, people spend most of of their lives as adults. Most people in the world are over the age of majority. This includes autistics. One of the ways that autistics are degraded is being denied the right to grow up. An autistic person may be 18 or 25 or 35 or 50 or older, and he or she will still be treated as a child with a caregiver who must be consulted on matters of his or her life. That’s the problem.

        Of course parents want to advocate for their children, and they should be encouraged to do so. But what’s happening now is that parents and parent-centered organizations are completely shutting out and shouting down autistic perspectives.

      • haddayr says:

        I have to echo what adkyriolexy says below: “what’s happening now is that parents and parent-centered organizations are completely shutting out and shouting down autistic perspectives.” I am a neurotypical parent of an autistic child. I think people like me still need to fight for the rights of our kids, but we are starting to think we can speak for autistics. And that’s why they are telling us to STFU; we CAN’T speak for autistics. Only they can. (I also find myself a little frustrated by the game of hide-the-shell you’re playing with the idea of privilege, here; you’re comparing apples to oranges. Autistics say we neurotypical parents have privilege because we are living in a world created for us that respects our opinions more than they do of actual autistics, and we ARE. You say: no no compared to other neurotypical parents we aren’t privileged! And nobody said you were. That’s like a man saying to a woman: I’m not privileged by my gender! Lookit how mean jocks are to nerds!)

      • adkyriolexy: I, and many others, find your comment deeply offensive, divisive, aggressive, and prejudicial against a very large group of people. You have not come to this discussion respectfully, but with hateful and damaging generalisations. If I used the same language as you did, but about autistics, people would be in an understandable up-roar too. You do not get a free-pass to attack parents of autistic children, and I am not obligated to let you use my blog to spread these perverse notions about us.

        At this point I have left your comment up because others have chosen to quote from and respond to it, but I will not allow you to further your hatred in other similar comments through my blog. I don’t think you realise how hurtful and damaging your words truly are, especially considering the history of people like Bettelheim being determined to “liberate” autistic children from the influence and LOVE of their parents too. Please think carefully before replying, and consider not replying at all if you cannot let go this level of unjustified hatred against innocent and loving people.

      • haddayr:
        “I am a neurotypical parent of an autistic child. I think people like me still need to fight for the rights of our kids, but we are starting to think we can speak for autistics. And that’s why they are telling us to STFU; we CAN’T speak for autistics. Only they can.”

        I do not think I speak for autistics. I think you’ve misunderstood what parents do and claim to do (though perhaps you yourself have mistakenly think you speak for autistics in the past, and are projecting?): Part of what we do is speak for our children who have autism, because that is our role as parents, there is nothing perverse or unusual in that. Sometimes our children are too young, or too severely autistic to have found their own voice yet, so we help them and represent the interests and concerns that sometimes only we know, since they are unique individuals living unique lives; I tried to explain this in my post in the discussion about a social understanding of disability and autism, that it’s far more complex than just “autism”, though that is part of it (which I also acknowledged). Furthermore, we speak for OURSELVES, as parents raising autistic kids, we have a voice that is different than the autistic voice, our stories and experiences are real and important too. None of that, NONE of it, invalidates the adult autistic voice, or the voice of our children once they can speak, or the ability of other autistics to shed insight on what it is like to live with autism.

        There’s a big difference between all that, and what you’re saying.

        “(I also find myself a little frustrated by the game of hide-the-shell you’re playing with the idea of privilege, here; you’re comparing apples to oranges. Autistics say we neurotypical parents have privilege because we are living in a world created for us that respects our opinions more than they do of actual autistics, and we ARE. You say: no no compared to other neurotypical parents we aren’t privileged! And nobody said you were. That’s like a man saying to a woman: I’m not privileged by my gender! Lookit how mean jocks are to nerds!)”

        That’s completely incorrect. I actually attack the relevance of the very concept of privilege when used in a linear comparative fashion. Carefully re-read what I said about the social model of disability and its relevance here, also click through to the link I provided in my post to my previous piece on the relevance of having autism in arguments. Furthermore, my complaint is particularly around privilege being used as a type of ad hominem attack, which it too often is. Your concern (misunderstanding) of how I have talked about privilege, does not fit with what I wrote at all, that is why you think I’m playing “hide-the-shell” when I most definitely am not.

      • Barnmaven says:

        Replying to adkyriolexy: When my son is an adult he will have his own voice. As his parent I try to listen to other parents and people like my son; but you will not speak for my son. You do not know him. Just as you are a unique person, so is my son. Your experience with autism is not HIS experience with autism and I refuse to let you or anyone else, neurotypical or not, define what his voice ought to be.

    • dixieredmond says:

      Thank you for taking the time to write. I always like your writing. You said, “The default view of an “autism advocate” is the parent of such a child. Autistic self-advocates are seeking to change this default.” That’s a good way to present what may be happening online in some conversations. I support that. I support that autistics should have the majority voice in talking about what happens policy-wise in regards to autistic people.

      I do not support that other voices have no validity (not that you said that, but I have felt that in some conversations). Sometimes it feels that as soon as someone knows I am a parent, my viewpoints have no value. Self-advocates do not address all the issues that are germaine to my son’s life. And when I do not see those represented, I need to speak up.

      • dixieredmond says:

        Replying to adkyriolexy :

        “One of the main goals of the autistic self-advocacy movement is to liberate autistic people from their parents. From abusive parents, yes, but also from kind, loving parents with the best of intentions.”

        That is where the tension is, right? That is where you have moved beyond being the voice for your own life and are assuming that another person’s needs are the same as yours. I won’t write more on this here. I want to think about the rest of what you wrote.

  13. dixieredmond says:

    I’m going to reread your post again, because you stated some really important things to consider. Thank you for writing it such a clear, concise logical way things that had been swirling around in my head. I think in pictures a good part of the time, and your words created some pictures for me that expressed what I had been thinking but couldn’t adequately express. Thank you.

  14. Lizbeth says:

    This. Just this. You have been able to articulate what’s been in my brain and on my mind. And you’ve done a way better job of it then I ever could. Thank you for this.

  15. Landon Bryce says:

    I tried to deal with many of the issues you raise in this piece.
    http://thautcast.com/drupal5/content/there-power-and-there-power
    I would be very interested in your comments.

    • That’s a very thoughtful piece Landon. I’ve only read it through once at this stage (busy day here!), I want to read it again and consider commenting over there. Definitely worth a read, thank you for sharing.

  16. Flannery says:

    Wow. This made me cry. Not just because it’s good, which it absolutely is. It’s that this complex explanation is what I’ve been trying to articulate. I FEEL all the things you’ve said, and I understand them deeply, but I have great difficulty transferring the feelings into words that will represent the breadth and depth of the topic. If that makes any sense whatsoever. Thanks for writing this. Now I can just point to this post when I can’t string the words together.

  17. ProfMomEsq says:

    I am going to try to tread cautiously here, because I am genuinely offended by a comment on this post, but I want to *respond* and not *react* to it, because I CANNOT emphasize enough how important a calm, rational, running dialogue is to achieving important goals.

    The commenter wrote this:

    “One of the main goals of the autistic self-advocacy movement is to liberate autistic people from their parents. From abusive parents, yes, but also from kind, loving parents with the best of intentions. Few neurotypical adults would willingly submit themselves to parental authority as adults, even if their parents are kind, loving, and with the best of intentions. This makes a certain degree of conflict inevitable. It’s not that parents aren’t well-intentioned; it’s that the most well-intentioned parents still look at their children as their babies needing to be protected.”

    First, I don’t understand how the commenter ascertained any “main goal” of the “autistic self-advocacy movement.” Is there an official organization for autistic self-advocacy? Are these goals published? Is there a resource that I, as the parent of an autistic child, can reference to know and understand the goals of autism self-advocacy? Because, one of the things I want most for my daughter is independence. I want her to be able to advocate for herself; not because she’s autistic, but because she’s an adult and that’s what adults do.

    Second, I am unsure whether the commenter chose to use “liberate” as his or her verb her for reasons of antagonism or to describe simply the process of growing up and becoming an independent adult. I think both are reasonable inferences from the comment, and that’s unfortunate. Using a charged word like “liberate,” which suggests that my daughter has been enslaved by me, makes it very, very difficult for me to respond rationally to what might otherwise be a valid point. If the autistic self-advocacy movement also feels the need to engage in this type of narrative, there will – as the commenter points out – be “inevitable conflict.” But, it won’t be the kind of productive conflict that resolves differences of opinion. It will be the type that further entrenches each side into it’s own camp. How is that a positive outcome for *anyone*?

    Third, I am having a difficult time not reading as hypocritical the complaint from participants in the autistic self-advocacy movement that they are continually subject to sweeping generalizations and stereotyping while these same people apply generalized and stereotypical labels to parents and caregivers. On what objective data did the commenter base the statement that “most well-intentioned parents still look at their children as babies needing to be protected”? Are there empirical studies that establish this? Are there contradictory findings?

    Finally, I think it’s time that everyone involved in the autism community – HOWEVER he or she came to be involved – started treating one another with some respect. The conversation isn’t about “privilege” or any other label of division or derision. It’s about a fundamental need for parents to be heard and validated and for autistics to be heard and validated. That is not going to happen on a broad scale if we don’t start hearing and validating each other *first*.

    • Very well said Prof, you speak for me and others with these words too, thank you for taking the time to articulate the concerns and why that comment was so upsetting.

    • LMB says:

      I’m having a hard time understanding why adkyriolexy was banished. Her comments look reasonable to me. She was clear (repeatedly) that she wasn’t making negative generalizations about parents. I hope we can honor that. Let’s not resort to hearing X and reacting as if we’ve heard Y and Z. There was no hate in her comments.

      Her use of “liberate” seems neutral to me. Let’s converse in good faith. She’s pointing out that we *all* grow up with the goal of being liberated from our parents (as a parent, I have the goal of liberating both my kids from me, or me from them, however we choose to look at it). The typical teen years are the classic period for conflict with parents around this. With autistic teens and adults, there are likely to be different or more complex issues around independence, but adkyriolexy — I think — was pointing out that the conflict is here not just a private one, between teens and parents, but a broadly cultural one too. I believe she’s commenting on the infantilization of autistic people in the mainstream dialogue about autism, which is an issue we should be discussing more often — and will be, I’m sure.

      Obviously, a goal of autistic self-advocacy is…. self-advocacy. It’s stunning how routinely and almost completely autistic people are excluded from the mainstream conversation about autism. Pointing this out is really not an attack on any privileged constituency — eg parents of autistic people — but a reminder that there is no *substitute* for the voices of autistic people. I will never forget how relieved I was when my autistic son became sufficiently verbal that he could explain behaviors that to me had previously been baffling — and how much sense those behaviors made, once he could communicate his experience. Having a conversation about autism without autistic people is like a bunch of only white people discussing racism. The conversation has to include everyone. To observe power is not to express hate towards those who hold it.

      • LMB, you do realise that everyone else here is actually pro multiple voices in the discussion, except extremists like the person you are defending, who argues our voices have had enough airtime and should go away now? I also tried to kindly interpret the original comment by adk, but it was them who came back to clarify that they did mean something more extreme. It is your interpretation which requires reading in a lot of extra information and intention which doesn’t appear to be there, though I greatly hope adk will prove us wrong and come back to clarify in the much kinder form that you have taken them to mean.

        Please note that they have not been “banished,” they haven’t (as yet) come back to respond or clarify. There is no banishment occurring, just my request that they make an effort to be respectful and leave the (apparent) prejudicial hate at the door. That was not an unreasonable request by me.

      • Sharon says:

        @ LMB I think to defend the term ‘liberate’ as you have is very generous but drawing a long bow. There are many ways to articulate what you have about wanting our children to be as capable of independence and self advocacy as possible (keeping in mind many autistic people will rely on their parents for life long day to day care) without using the deliberate term of liberate, which infers to set free from constraint. This issue of our children’s reliance on others for care after we are gone is the source of probably more stress and worry than any other. Most interventions utilised, such as ABA, are in an effort to support our kids in becoming the most independent adults they can possibly be. Most parents don’t need lectures from non parents on the importance of giving our children skills in self advocacy. As you rightly say, we do that instinctively anyway.

      • LMB says:

        (Reply to A&O)

        adk said this: “Parents should have a voice, certainly. Right now, parents have much too much of one. Allistic parents’ voices are amplified while autistic people’s voices are silenced and dismissed. … Increasing the representation of autistic people will necessarily mean decreasing the representation of allistic parents.”

        Not this: “our voices have had enough airtime and should go away now”

        She did not argue for parents leaving the conversation, but for making room for autistic people. Which in effect means parents (and other major participants) would have somewhat less space for themselves — which is reasonable, since autistic people currently have hardly any.

        Again: “Parents should have a voice, certainly.”

        Not an extremist position at all.

      • LMB, I find it a bit disingenuous that you edited out the two parts of the paragraph you quoted, that imply the more extreme version, and that are much harder to justify or defend (particularly in the form of Internet communications and blogs). It’s also abundantly clear from the responses here that there is more than one part of the comment that we take issue with.

      • LMB says:

        Well, that seemed to be your chief complaint: that adk wants parents out of the conversation. I can’t see where she said that. She’s pretty careful about qualifying her argument to be clear that it wasn’t an attack on parents as a group. I can see she has triggered some deep feelings, but it doesn’t look to me as though that response is based on what *she* has actually said. The response here seems to be about the extreme black-and-white anti-parents statements made by others. We see this regularly in autism politics: blame, unjustly applied, causes enduring hurt, anger and defensiveness, and makes the real issues far more difficult to discuss.

        The other main complaint is evidently her use of the word “liberate,” and that’s subjective. It’s slightly flip language, which I appreciate and do not find offensive — especially in the broader theme, the need to empower autistic adults. I don’t feel the distaste but others evidently do, so this isn’t one to fight over.

      • Fair enough LBM. As I’ve said too, the original commenter is welcome to clarify if they choose to, and I hope you’re right that we’ve misunderstood them.

    • Sunshine says:

      I am so impressed by your eloquence, as well as your restraint. Thank you.

  18. Sharon says:

    This quote,

    One of the main goals of the autistic self-advocacy movement is to liberate autistic people from their parents. From abusive parents, yes, but also from kind, loving parents with the best of intentions.

    I’m sorry I just cant be as diplomatic as the others in relation to that statement. The idea autistic people should be ‘liberated’ from their families, often their strongest source of love and support is ridiculous. Really, it’s just silly.

  19. J-Nut says:

    I am a grown woman. I have a higher education, career and am mother to two children. I still go to my parents for advice and support. Our relationship, of course, has evolved, but they are still my parents and are the two people I know always have my best interests at heart, even if I don’t always agree with them. I don’t choose to be “liberated” from them, and I do hope my children won’t choose to be “liberated” from me, regardless of neurology or disability.

  20. adkyriolexy says:

    I believe I was very clear that my use of the word “liberate” was in reference to autistic ADULTS. The fact that you chose to interpret my comment as a reference to autistic children is rather evidence for my point—by default, people think of autistics as children, and when someone says “autistic,” people think “children.”

    It’s entirely legitimate and appropriate for parents to have authority over, and make decisions on behalf of, minor children (obviously, barring abuse or other parental unfitness).

    No one in the autistic self-advocacy community is trying to take your minor children away, or prevent you from making decisions on behalf of your minor children (although we may have opinions about those decisions), or prevent you from advocating on behalf of your minor children (that’s what parents are supposed to do).

    The problem is that for autistics (and, to varying degrees, anyone with a “disability” label, but right now we’re talking about autistics), childhood, a temporary phase of life, is taken to be a lifelong state.

    I am a parent. Some of my children are on the autism spectrum, and some are not. I want all of them to be liberated from me, and from their dad. Love has nothing to do with it. Of course I love them, but it’s precisely because I love them that I want to set them free. I am not enhancing their lives by keeping them tied to my apron strings forever. I want them to make their own decisions. I want them to make decisions different from the ones I would make. I want them to make mistakes. I want them to have the opportunity to stay out too late, eat too much junk food, and spend too much money. I want them to date people I can’t stand. I want them to do something I advise against and have it turn out perfectly and let them say “I told you so, Mom.”

    While they’re young and small, I decide what’s best for them. But the older they get, the more it becomes my duty to recognize that doing what I think is best for them ISN’T what’s best for them. What’s best for them is deciding for themselves, making and learning from their own mistakes, figuring out what works for them. Is that an abdication of parental love? I don’t think so. I think it’s an embodiment of it. Liberation from parents is a process of individuation we all must go through, regardless of neurology. That shouldn’t be controversial. Yet, when it comes to autistics, it is. That is the crux of the discrepancy between parent-based advocacy and autistic self-advocacy.

    • But it’s not controversial, that’s why we (or I – I’ll let others speak for themselves) misread you! Because no one here is trying to hold their children back or hold them down, they are always striving towards their independence, that’s the primary aim of almost all autism therapies: Gaining independent skills and competencies. So speaking of liberating autistics from their parents just doesn’t make sense, where do you see us holding them back..? Do you mean because we have to care for severely affected adults who lack self-care skills? Because that’s the only place I see it occuring, and in those situations it is necessary (and frequently legally required) that we do not step back, because that would be abdicating responsibility that we have as parents. I don’t really know what you’re referring to when you talk about children needing liberation from us.

      Also, you are very wrong by assuming we mean “children” when we hear and use the word “autism.” Please remember that even as adults, these are still our children, that never ever changes, no matter their age. When I say “my child,” I could be talking about a 30 year old, and I would not be demeaning or belittling or infantalising them, they will ALWAYS be my offspring, my issue, my love. I think you may be confusing together “child” as minor, and “child” as offspring, which would make the rhetoric look a lot worse than it is or is intended to be. I don’t know if that’s what’s happening here, but it may explain part of the confusion.

      • adkyriolexy says:

        I know that our children will always be our babies; that’s a natural human reaction. I’m not saying that parents shouldn’t continue to love, care about, be involved with, help, support, or give advice to their adult offspring. I am saying that parents should not make decisions FOR their adult offspring, or override their adult offspring’s own decisions/self-advocacy. And from what I have witnessed, that seems to be the crux of the conflict between parent advocates and autistic self-advocates.

        I do not agree that the purpose of most autism therapies is to gain skills and independence. I wish it were so, but I don’t believe that it is. The purpose I see of most autism therapies is to train autistic children to behave like neurotypicals, and train them into lifelong compliance. The lifelong compliance part is the part that’s applicable to what I’m talking about.

        Fundamentally, the problem with the parent-dominated state of autistic advocacy is that the categories “what [person] wants” and “what [person]’s parents want for him/her” are not necessarily synonymous. Even if the parents are good, loving, have a generally good relationship with their child, etc.

        An analogy: married women had to fight for the right to maintain personal property after marriage. Why? Didn’t they love their husbands? Didn’t their husband’s love them? Sure, but that’s not the point. Sometimes people who love each other disagree. We need the right to disagree, the right to speak for ourselves, not be represented by others—even if those others are people we love, people who love us, people who want what’s best for us, etc.

      • I’ll respond to each point as you made it, to try to keep this manageable:

        We agree about it being ideal and wonderful that autistic adults can and should advocate for themselves. I don’t see the extremes you refer to in regards to adults trying to over-ride the adult voices of their own children, but just because I haven’t personally seen or experienced it doesn’t mean you haven’t, I can accept that too.

        Having been through so many therapies with my son, I couldn’t disagree with you more about the point and function of the therapies. I don’t see compliance training, I see teaching, support, empowerment. I see my son learning to express himself thanks to speech therapy, I see him learning to conquer his fears and anxieties thanks to occupational and physiotherapy, I see him finding ways to make new friends through his supported involvement in social situations with an aide. I do not see compliance training in any of that. Are there bad therapists doing poor and aggressive jobs of autism therapies? Yes. Is that the norm? Not at all, very far from it. I think it is dangerous to dismiss autism therapies as “compliance training,” and inaccuarte too. We may have to agree to disagree on this point, but you’re welcome to explain further.

        Parents try hard to figure out what is best for their children. Do they always succeed? No. We’re not flawless, we make mistakes. But I do see the average parent being very open to hearing about where their understandings have gone wrong and why. Not all parents are open-minded, I grant you that, but in my circle of friends (those I know and interact with the most), I see very open people anxious to learn how to do best by their child.

        I think you and I agree on major points about the importance of independence and adults being able and encouraged to speak for themselves, but we strongly disagree on how we interpret what we see in the autism community and we are apparently actually seeing some very different things quite independently of their interpretation too.

      • Sharon says:

        The therapy my son undertakes is specifically to provide him with the skills he needs to navigate the world independently. Having said that I’d like to see some acknowledgement here that many autistic people will be dependent on their families for ongoing care throughout their adulthood. Not because parents have deprived these people of their right to self advocacy but because they cannot manage to live out of home safely. I cant imagine any parent who would be happy with that case scenario. Furthermore these autistics may be incapable of engaging in community based advocacy so who speaks on their behalf? Is it not OK for parents caring for adult autistics to expect a right to demand support and acknowledgment on behalf of their child?

    • ProfMomEsq says:

      adkyriolexy: I’m not sure if you wrote this in response to my comment, in response to the dialogue between A&O and LMB, or in response to something else. I don’t want to insert myself into this conversation where it is not warranted. If this is directed to what I wrote, and you’d care for me to respond, I would be happy to do so.

  21. Please note: Someone who goes by the name of “Eighteights,” has been attacking me and other commenters on this blog post. Intensely nasty personal attacks. I asked them to stop but they wouldn’t. The only way I know to stop someone in this situation, when they persist, is to delete all comments by them so the blog no longer defaults to recognising them at a valid commenter, and mark them as spam. (In case anyone was wondering what happened to their comments.) This is a last resort action I am forced to take when someone resorts to such aggressive behaviour. It is not an action I take lightly. In over two years of blogging, I have only done it once before.

  22. Pingback: Privilege is not a game | Small But Kinda Mighty

  23. OMum22 says:

    Your post made me think a lot about my views concerning privilege and I used it as a jumping off point to talk about that quite a bit. I assume you’ll get a pingback but just in case, here’s a link. http://smallbutkindamighty.com/2013/02/15/privilege-is-not-a-game/

  24. adkyriolexy says:

    The thing is, I don’t think autistic self-advocacy is ideal and wonderful. I think it’s normal and the default—or at least, it should be, and if it isn’t, that’s a problem. For neurotypical youth, becoming a self-advocating adult isn’t ideal; it’s the normal, expected default unless something horrible happens. I believe the same should be true for autistic youth.

    I agree that autistic children (like non-autistic ones) should be educated in such a way as to facilitate their future adult lives, including preparation for careers, higher education, family life, etc. I don’t support “treatment” for autism, because it isn’t an illness, but I do support specialized education, including things like speech therapy and communication lessons, precisely to facilitate these future adult goals.

    However, with that said, I must say this regarding dependency and self-advocacy: while I fully support educating children to be capable of as much independent living as possible, I do not agree that autistic adults who are still financially dependent on their parents are exempt from either the rights or the responsibilities of self-advocacy. There are many neurotypical persons who, for one reason or another, are financially dependent on family members into their adulthoods. Perhaps they’re unemployed, or fallen on hard times, or homemakers, or students, or physically disabled, or any number of other things that preclude financial independence. I don’t deny that there is stigma and prejudice against financially dependent adults, but they are still widely recognized to be capable of speaking for themselves, expressing opinions, making decisions for themselves, and generally having personhood.
    For example: it would be very unusual for a news media outlet to run a story on, say, the unemployment crisis among recent college graduates who have to move back in with their parents, without ever once acknowledging the perspective of the unemployed adults. Why does this change when the unemployed adult is autistic? Clearly, it’s neurology, not dependence, that makes the difference.

    So yes, it’s good and right to educate your children, prepare them for independent careers, and so forth. But their right and responsibility to self-advocacy should be irrespective of this.

    • Sharon says:

      And I would argue that most parents work hard to ensure their kids will be as self advocating as is possible given our deep fears about their potential vulnerability once we are no longer here to ensure their protection. I would suggest no one is more motivated than parents to promote theirs children’s independence, at least as much as is possible. The idea that there needs to be a social movement outside of the family to support the emergence of self advocacy in autistic people undermines the motivation and value of parents in the importance of that task. Parents want for their children, the same things autistic self advocates want.

      • (I don’t feel a need to respond further to the latest reply, since Sharon hit it on the head for me. I’m only popping my head in to congratulate Sharon on expressing it so well, and to thank adkyriolexy for engaging in this discussion in such an open manner. I think there is a lot of common-ground here, that gets swallowed up by fears and bad history on both sides. I won’t pretend we all want exactly the same thing in substance (but I think we do in more abstract terms; we want the best for autistic people), but if we can at least talk about it openly and calmly, we’re in a good position to reach a better understanding of the underlying concerns that otherwise give rise to more heated and hostile debate.)

    • Sharon says:

      Entirely co incidentally I just came across the below post and subsequent comments. The exchange between the author and female commenter is interesting for a few reasons, but the last comment about parents waiting outside of a meeting for their autistic children illustrates for me the point I am making here about how keen parents are for our kids to reach out into the community, but that being balanced against need for safety.

      http://blog.robertmoran.org/2013/02/09/seeing-myself-in-the-mirror/

    • dixieredmond says:

      I keep coming back to this paragraph, which indeed is triggering in many ways.

      “One of the main goals of the autistic self-advocacy movement is to liberate autistic people from their parents. From abusive parents, yes, but also from kind, loving parents with the best of intentions. Few neurotypical adults would willingly submit themselves to parental authority as adults, even if their parents are kind, loving, and with the best of intentions. This makes a certain degree of conflict inevitable. It’s not that parents aren’t well-intentioned; it’s that the most well-intentioned parents still look at their children as their babies needing to be protected.”

      Yes, a certain degree of conflict is inevitable. Because the goal of the self-advocacy movement as stated by you is in direct conflict with the needs of some autistic people. How do you address the needs of some autistic people who need help in making decisions as adults? In ‘liberating autistics from parents what are you liberating them to? Because what you described seems somewhat utopian and nonexistent in the world I am living in. I read your description about wanting the same chance to make mistakes, etc. And I do agree with that (to a degree). But I would sincerely like to hear this very real issue addresses for parents who have children who will need lifelong support. What I often read are tropes that the “parents have given up” on their children. Easy to say. And not the truth in any way, shape or form.

      • adkyriolexy says:

        Well, if an autistic adult agrees that he needs help making decisions, and seeks out that help, there is no conflict. If I have to make a decision on something I don’t know much about, I seek help. I ask for advice. I do research. I gather my information, and I decide. The same as a neurotypical would do. I hope that when my children are grown, when they face decisions they need help with, I will be one of the people they choose to call. And I will offer what advice I can, and they will choose whether to take it or not. That’s how it’s supposed to work.

        The conflict happens when parents (or others) try to take the decision AWAY from the person who has a right to make it.

        As for adults who need support, I did allude to that in my comment about independence. Yes, there are adults who need support. But why should needing support preclude freedom to make one’s own decisions? If I became paralyzed and needed a care attendant to help me move around, should my care attendant have the right to manage my bank account? Why?

  25. Pingback: A Message To Non-Autistic Parents « Linda Mad Hatter

  26. Jude says:

    I think the fact that there is so much disagreement between people in this thread is a good example of why there should be multiple voices in this argument.

    I’m going to ignore the privilege aspect of the article and remain on what I feel is the point of the article: Parents’ voices should be heard.

    I’m an Autistic Adult and I have friends (of the same age) who have children with autism or autistic children (different people prefer to be called different things). We are respectful of each other. I respect their right to be a parent, and they respect my right to be an Autist. Due to this mutual respect, I find myself being asked for advice more often by them. It’s nice to have someone ask me what it’s like when *insert non-typical neuro thing here* happens because I know they’re doing this FOR their child. My answer always starts with “This might not be the case for her or him, however when I feel that way it is because…”

    They are experts on parenting children with Autism. I am an expert on living my life, which is defined by Autism. That’s the difference. The problem is that this difference isn’t acknowledged very often. A lot of advocacy groups use the word Autism and don’t have any people with Autism speaking for them.

    There’s a vast group of Autists out there who aren’t children and are no longer being parented. What I hope that people gain from this comment is that your children will one day be adults who don’t have as much of a voice as their parents did/do. Centering the argument around parenting has ACCIDENTALLY caused adults a hardship. I think it’s important to point that out from time to time and try to make a more balanced argument for Autism in general.

    I appreciate everyone’s very serious emotional commitment to their loved ones with Autism. The amount of passion in this thread is very telling of how ferociously people care for their loved ones. Adults like me are in no way trying to tell you how to raise your children, what your children are feeling, or how to speak. We merely ask that when Autism is brought up there are many sides with many points of views 🙂 .

    I hope I explained this without triggering language, or insulting anyone. I really do mean well.

    • Sharon says:

      I think you make a good and clear point. I also think if we understand the history of autism advocacy we might understand why parent voices became so loud. It was parents worldwide who created the now well established organisations. Where I am in Australia every organisation set up to support autistic people was created by parents. Parents who felt marginalised, isolated, lonely and scared reached out, connected with other parents to form networks of support around their families. And to advocate in greater numbers for awareness and recognition. I see the emergence of autistic people demanding their right “at the table’ as a natural progression of this early movement by parents. I think where we get into trouble now is when autistic self advocates start to tell all parents their voices are no longer needed. For parents who feel they need to advocate on behalf of their kids still that dismissal is very hurtful.

  27. adkyriolexy says:

    I can’t speak for “parents” across the board, as each parent is different. Some parents want their children to become self-advocates. But the parent-centered autism organizations? I do not see them supporting self-advocacy at all.

    I do think that most parents (not all, of course) want their children to self-advocate in theory… but not necessarily in practice. This seems to be true whether their children are autistic, NT, or otherwise. “I want my son to make his own choices, but not THAT one!” or “I want my daughter to be strong-minded and question authority… but do what I say!” seem to be fairly common sentiments. Again, this applies to parents of NTs too. It’s just that parents of NTs have much less tangible real power to enforce these sentiments and impose their will on their children, particularly once the offspring are grown.

    Which gets back to the issue of privilege. No one is trying to take away allistic parents’ voice or right to their opinions, only their privilege. It’s fine (it’s good, even!) for parents to have opinions about their children’s lives, even after those children grow up. It’s fine for parents to express those opinions. The problem is when the parents have the power to actually impose those opinions.

    I would again use the analogy of the struggle for married women to maintain their property rights. Most husbands want what’s best for their wives. Many husbands value their wives’ opinions and self-advocacy. Why is there a need for a social movement outside the marriage to secure women’s interests?

    If an autistic person’s goals for himself happen to align exactly with his parents’ goals for him, that’s wonderful. But I’d like to hear it from the autistic person, all the same.

  28. LMB says:

    This is becoming a pretty fascinating discussion. The same debate is going on regard to other populations who are considered vulnerable: how do we balance our duty of care (an ethical issue) with their loss of agency (another ethical issue)?

    Adk used the analogy of marriage: why did women need to “liberate” from husbands who usually had their best interests at heart? Why did wives need to own their own money and assets? Place their own vote? Participate in shared decision-making about the family and household? No question, they did. Likewise, how do we care for our increasingly elderly and frail parents without denying them self-agency? The latter has been a major issue in my own family. I’ve been appalled by the approach taken by relatives who — no question — would be horrified and upset by the suggestion that they were driven by anything other than the elderly person’s needs. Hey, we all know we’re good people. And yet it’s easy to go too far in terms of decision-making on behalf of an incapacitated person.

    In my family, a decision was made not to tell an elderly, frail mother that her adult son had serious cancer. They didn’t want to “worry” her. Of course she would have been worried sick. But as this played out, the cancer-stricken adult son never visited her, even when she was in the hospital herself. Why had he abandoned her? The conspiracy of silence meant no one told her anything: “Oh, he’s busy…” She was broken-hearted. Studies on this have shown that this well-intentioned approach does more harm than good. Current bioethicists demand that we don’t over-protect our loved ones. Parents have a right to hear painful news about their sons and daughters. They have a RIGHT to that anguish. It is part of being a parent. Had her son died, which was a possibility for a while, this mother would have been denied the opportunity to start the grieving process earlier, to prepare herself, and to say goodbye to him. She would have suffered even more, because of a decision made “for her own good” by others. There’s no question they were loving people trying to do the right thing, and yet their decision was selfish and wrong.

    Part of parenting is agonizing about our adult sons’ and daughters’ decisions. We have to suck it up when our children are not disabled; when they date some schmuck, get a tattoo, gamble away their money, drop out of college. We don’t have the right to intervene, beyond whatever advice they will accept from us. Adults are allowed to be irresponsible. Our parental helplessness is painful, no question. That’s an outcome we choose when we decided to become parents. And our adults sons and daughters will learn painfully, too, which is hard to watch.

    The scenario is entirely different, though, when the adult son or daughter is disabled. Then, we think we do have the right to prevent them from making those mistakes, “for their own good.” Adk is arguing that this is unethical — rightly.

  29. dixieredmond says:

    “If an autistic person’s goals for himself happen to align exactly with his parents’ goals for him, that’s wonderful. But I’d like to hear it from the autistic person, all the same.”

    Yes. I agree with that. But who gets to do the deciding? You?

    “The scenario is entirely different, though, when the adult son or daughter is disabled. Then, we think we do have the right to prevent them from making those mistakes, “for their own good.” Adk is arguing that this is unethical — rightly.”

    I disagree that this is unethical. If my son wants to walk in the snow without shoes I will prevent him from doing that. I know the dangers involved and he may not.

    And I think that is where the rubber meets the road. It is why I feel like disengaging at times from these conversations.

    • adkyriolexy says:

      “But who gets to do the deciding? You?”

      The person in question. Whether autistic, NT, or otherwise. We have the right to make our own decisions. Neurology shouldn’t affect that basic right, any more than gender or ethnicity should.

      “If my son wants to walk in the snow without shoes I will prevent him from doing that. I know the dangers involved and he may not. ”

      If your son is a minor child, that’s entirely legitimate. I prevent my children from doing dangerous things all the time, like wandering into traffic or subsisting exclusively on cake. That’s a parent’s job—Temporarily. And then a parent’s job is to let go and let her now-grown children be as stupid, reckless, irresponsible, immature, and self-destructive as they like.

      • dixieredmond says:

        Adkyriolexy – do you have grown kids yet? I think we disagree.

      • Sharon says:

        askyriolexy I wonder how much time youve spent with people at the severely affected end of the spectrum? Particularly those who also have an intellectual disability? I think what youre saying is great in theory but when you apply it in practice with some autistic people there are potential risks, serious risks. So much so that parents may face charges of neglect if they allowed their ” now-grown children be as stupid, reckless, irresponsible, immature, and self-destructive as they like.”

        I agree with Dixie here that I think your perspective is sightly utopian. Although I do appreciate the basis of the philosophy. And I agree that even those who require lots of day to day support should still have the right to as much personal agency as is possible. As mentioned above, that is ethically correct for any human.

      • adkyriolexy says:

        Dixieredmond: No, I don’t, yet. If you’re going to suggest that when my kids grow up, I’m going to still want to protect them, or find it hard to let go, I’m not going to disagree—this is hard for parents. I’m not denying that.

        But parents of neurotypical children don’t have a choice. I’m sure that parents of neurotypicals are pained, worried sick, heartbroken, and devastated when their grown children live dangerously, behave recklessly, drink too much, date or marry horrible people, and any number of other things. But the parents can’t stop them. They can beg, plead, cajole, withhold financial support, even disown their children, but legally, they can’t actually *stop* their adult offspring from exercising their freedom of choice (unless their offspring are actually breaking laws). That’s just part of the heartbreak of parenthood.

        Fundamentally, it’s a simple question of equality: autistics should have the right to be stupid, live recklessly, and break their parents’ hearts just like neurotypicals do.

  30. dixieredmond says:

    Adkyriolexy – As a parent, you can appreciate that many parents are doing this for the first time around, whether parenting neurotypicals or people on the spectrum. You bring up some interesting points to be considered when the time comes.

    There is an age when people are considered adults legally, but there is no certain number when people (all people) are ready to take total responsibility for their lives. It’s a gradual releasing, as you have mentioned here and in other places. Every family has to work through that in the right season.

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