Thursday, August 17, 2017

Asexuality Research - What I Want to See

This month, the asexuality blog carnival topic is Asexuality and Academia. I'm just going to list things I want to see more researchers doing in their asexuality research:

  • using the split-attraction model
  • studying squishes and platonic attraction
  • studying sex-repulsion
  • studying libido and determining how aces with average libidos differ from aces without libidos
  • studying the needs of ace children in sex education
  • studying features of allosexuals that make them more or less likely to make an ace/allo relationship work
  • studying asexual autistic people, especially AMAB autistic aces, without approaching the question of sexuality in autism from a deficit framework or especially from the 'extreme male brain' theory
  • studying asexuality in an fMRI
  • studying asexual nonbinary people
So that's that. A short post, I suppose.

Friday, August 11, 2017

Is Baby Signing Good for the Deaf Community?

There seems to be some controversy in the Deaf community about the Baby Signing movement - a movement by hearing parents of hearing preverbal children, teaching their children to sign in an attempt to boost cognition and early language ability.

As a hearing person who plans to sign with my children, I've looked at the controversy and arguments, and here are my thoughts.

First, it's important to remember that sign languages aren't just languages - they're also assistive technology. There are people for whom learning a sign language has benefits well beyond those accrued by learning a second spoken language. Deaf people, obviously, fall into this category, but so do many hearing people, especially those with complex communication needs and kids who are strongly visual-kinesthetic learners.

It's also important to remember that unlike a physical piece of technology, signs are not a limited commodity. Many Deaf people have complained that, in a time when Deaf babies still don't have guaranteed access to signs, hearing babies are being signed to. But while that is ironic, signing to a hearing child doesn't take away access to signs for a Deaf child. In fact, quite the opposite.

Hillary Wittington, in her book Raising Ryland, describes how when her son Ryland was 8 months old, a fellow mother told her that she'd enrolled herself and her hearing son into a sign language class, extolling the benefits of the class. When Ryland was almost 14 months, another friend, Jenn, said that she's enrolled her hearing daughter into sign language classes, and convinced Hillary to go to an intro to check it out. Two days before the intro, her father-in-law told her that he was concerned about his granddaughter's hearing. She gets assessed by an audiologist several months later and is diagnosed as profoundly deaf.

Because of her friend's involvement in baby signing, Hillary and Ryland began baby signing classes before he was even diagnosed as deaf. Ryland's grandmother and uncle both study signing with her. Despite choosing to get Ryland a cochlear implant, Hillary insists on continuing to sign, both to allow Ryland to communicate before he can speak, and for those times that Ryland will need to remove the external processor. By the time Ryland has his implant activated at 20 months, he knows more than 200 signs, and he continues to use signs throughout the book whenever he is not wearing his external processor.

Besides those Deaf children whose hearing parents get coincidentally involved in baby signs before their diagnosis - or possibly even before they are born, if they have older siblings - the increasing awareness and normalization of baby signing is likely to reduce the fear of signing for many hearing parents.

One of the biggest fears for many hearing parents is that if they sign, their child will never learn to speak. While we should also challenge the prejudice that leads to parents valuing speech over alternate communication modes, the central tenet of baby signing is that signing helps speech. So even if parents value speech over sign, this need not stop them from signing.

And it's not just Deaf people who need to sign. Parents of children with complex communication needs often don't feel welcome in the Deaf community, and their children, who generally understand speech far better than they can speak, don't have the same needs. Many of the stylistic traits that hearing signers gravitate to and Deaf people label as bad signing, such as PSE and signing while speaking, actually suit the needs of hearing people with CCN better than ASL does.

Many CCNs are also harder to diagnose accurately than profound deafness, and can't be diagnosed in newborns. Which means that the only way most children with CCN will be exposed to sign before their speech falls behind is if their parents are signing when they believe their child is an NT hearing child (this happened to Maya from Uncommon Sense).

Friday, August 04, 2017

Cassandra Syndrome and the Denial of Disability

In an old post of mine, the comment section has exploded with 'Cassandra Syndrome' women. The rampant ableism is disgusting, and it has given me new insights into this group.

One woman responds to my statement:

"Very often, the AS person is already exerting much more effort to accommodate their NT partner than vice versa."

Whew, where shall I start. It may feel that way to you, but being Aspie partners are exhausted after mowing the lawn all day as it takes all day and have an incredible lack of empathy and understanding, I can see where you may think that is true.
Where to start?

If the AS person has spent all day struggling to do a task to the point of exhaustion, that still doesn't count as 'exerting effort' in her eyes, because that task shouldn't be that difficult?

Well, guess what? Autism is a disability! The very definition of disability is that it makes tasks which are simple for most people difficult or impossible for the disabled person. This is like getting mad that it took several hours for a wheelchair-using partner to fetch something from the top shelf, when it's amazing that they figured out a way to get it at all.

Specifically, with the task of mowing the lawn, that's something I would find difficult too, and I know others find it harder than I do. Fortunately, I don't tend to mow the lawn, which I'll get to later.

I don't know this man, but I know for me, the biggest challenge for lawn-mowing would be the noise. The sound of a lawn-mower is typically a loud continuous monotone buzzing, and monotones are the worst for my auditory sensitivities. (It would be even worse if it was a high-pitched monotone, like a vacuum cleaner.) I generally can't even go outside for more than a few moments while someone's mowing, or else my head aches and I need some quiet to recover. And I know many autistic people with a lot more sensitive hearing than I have.

When I try to do a task that is extremely sensorally distressing, I need much more frequent breaks. I could wind up doing 5 minutes of work at a time, punctuated by 10 minutes breaks, because that's literally the only way I can do it. I could easily see a process like that stretching out a task to take all day. And since those breaks won't be enough to fully recover - that could take 24 hours or more - the person would absolutely be exhausted by the end of it, and not in any state to do even more work.

And this isn't even getting into executive dysfunction. Sometimes, it can take all day and lots of effort for me to even get myself started on a task, because I have an urge to avoid it that is very tough to fight. If you've ever procrastinated on an assignment, you have an idea what this feels like. Only it's stronger, and triggered by different things. This process is why, for example, ADHD children can wind up spending several hours trying to do a piece of homework that took 5 minutes of actual work to finish. And you can bet that those ADHD kids are exhausted and need a break after all of that, even if it seemed unnecessarily difficult to an NT person.

My biggest question here is why was he doing the lawn? I can bet that this NT woman can do it way easier than most AS people could, and meanwhile, he could have been doing other things that aren't extraordinarily difficult ordeals for him.

In my family, we have four people who all have some sort of disability that makes some household tasks difficult. My father and I are both on the autism spectrum, but with different flavours of autism. My father also has some sort of recently-developed shoulder pain, and a much longer-term knee problem that I think has mostly resolved. And diabetes, which means he needs to take time to test his blood sugar and can't think very well when he's hungry. I have hypermobility and asthma, and also milder blood sugar issues. My mother has asthma too. and arthritis in her knees. And my brother is chronically depressed, with features of social anxiety and agoraphobia. (And my brother is the person who finds it hardest, of all of us, to do housework. Just because depression is invisible doesn't make it any less crippling.)

The rule I follow is that I do tasks that are difficult for me only if: a) the task is vitally important and urgent (or has become urgent from neglect), and b) other people can't do it more easily than I can. This is why I basically never mow - my Dad, who has milder auditory sensitivities than I do, can mow fairly easily; and I honestly have never seen a situation where mowing was vitally important and urgent.

In contrast, cleaning up dog diarrhea, a task I find as difficult if not more than mowing, is something I've done several times. My mother's knees make bending over painful, my father has a sensitive gag reflex, and my brother rarely has the energy to do something like that (and is usually not awake, because the dog usually has diarrhea at night or in the morning, and he usually sleeps in until noon). And cleaning up dog diarrhea is definitely urgent, because it stinks up the whole room, and if it's left alone it'll make a bigger mess over time. So even though cleaning up dog diarrhea is extremely unpleasant for me, and makes me gag, wash my hands excessively, and shudder from sheer disgust (and yes, need a break afterwards to calm down), I'm probably either the most likely person or second most likely person to actually do that particular task. (And I'm really glad my dog's digestive tract seems to have settled down with maturity.)

But the bulk of the work I do for my family is stuff that doesn't take nearly so much effort for me. Laundry is a bit difficult because the cat box is in the laundry room, but otherwise fairly simple, so I do a load whenever I go in that room for any reason. (Usually because I'm out of clothes in my room, so that works out well.) I also do the dishes semi-regularly, as long as the bung isn't in, because reaching through dirty water to pull out the bung is way harder for me than doing dishes in general. I do the majority of dog feeding and dog walking, because I'm usually home a lot more and it's often harder for me to ignore the dog's pleas than to walk her.

When someone is sick, if I actually know that a) they're sick, and b) that affects their ability to do X, I'll often pitch in to go above and beyond for them. Of course, these women would probably not agree, because they don't seem to get that there's a difference between not understanding a situation and not caring, and sometimes I don't get what would seem obvious to most people. My parents have sometimes told me they're sick, then asked me to do a task, and then had to explicitly explain that they can't do that task because they're sick, because I didn't connect those two pieces of information.

I get that it's frustrating when someone isn't doing the same amount of housework as you. I especially get it since my brother developed depression, because boy is he ever frustrating sometimes! But I've also very often been the person who tries the hardest and sees the least result from it, and ends up doing less than other people who can do it so much more easily than I can.

It's important to remember that AS adults have a much higher rate of homelessness than NTs, and a lot of that is due to disability reasons. You might be wondering 'how would this turn out if I wasn't here to do this task for him?' Most likely,  the task would not get done, or not enough. There are AS people who have had their homes condemned because it's literally not suitable for human habitation anymore. This isn't being lazy or uncaring, this is a disability, and not primarily one of 'lack of empathy' either. Others have stayed in abusive homes simply because the alternative is homelessness or institutionalization. And no doubt many have tried to find a partner to act as a caregiver, even if the relationship doesn't work on basic level. Trading sex for survival isn't just something that women do.

And that's the big lie autism 'experts' spout, that the only major issue affecting high functioning autistic adults is social difficulties. About half of all autistics with average or above average IQ have significant impairments in daily living skills. Often, our ability to care for ourselves and our homes is on par with someone with mild to moderate cognitive disability - I've met people with Down Syndrome who have better independent living skills than I do.

And on the subject of social skills. If you talked to your Deaf partner's back, they wouldn't know how you were feeling. It's not a lack of caring to not realize something that hasn't been communicated in a way you are capable of understanding. Autistic people are expected to do all the work to figure out how NTs communicate, to learn how to read nonverbal cues, to guess at the unsaid messages communicated only through sighs and glances, to connect the dots between what they said and what it actually means. And when it's time for the NT person to read the autistic person's feelings? Once again, the autistic person is expected to put in all the work, forcing appropriate facial expressions and tone, putting themselves through sensory discomfort to give off signals the NT will expect, and learning not to say what they need outright because that's considered rude.

If you're NT, you are privileged to live in a world where everything is made easier for you. I won't say it's easy, because life never is, but an NT goes through life with so many invisible accommodations made for them without questioning. You can expect that most people will understand what you're trying to communicate, and will express themselves in a way that you can understand virtually effortlessly. You can expect that if something is extraordinarily difficult for you to do yourself, there'll be someone you can hire to do it for you, or else your life will be designed to make doing that thing unnecessary.

To fail to recognize that being NT makes your life easier in so many ways, and that the same amount of apparent work might take twice or ten times the effort for someone else than it does for you, is showing a lack of empathy.

But there's something else going on. Autistic women and perceived-to-be women, such as Alyssa, Neurodivergent K, and Dani Alexis, have all commented on a trend of autistic men or their mothers trying to hook them up with autistic girlfriends who can act as unpaid caregivers. And I have no doubt that even more are doing this with NT women, who are more likely to a) be straight and cisgender, and b) actually capable of acting as a caregiver to an autistic person.

It's an icky dynamic. Let me be clear: helping your disabled partner with activities of daily living isn't icky. What's icky is when that's the primary basis for the relationship.

I don't know why I'm not seeing more autistic women and NT men in this dynamic, but I'm guessing it ties back in some way to sexism. Yes, autistic people are more often men, and yes, autistic women seem less likely to be straight, but the difference is too dramatic to be chalked up to those two factors. I doubt it's coincidence that the 'Cassandra Syndrome' suffererers are disproportionately members of a gender expected to be nurturing homemakers paired with members of a gender expected to be entitled receivers of care.

But at the same time, part of me really can't blame the men (or their mothers) for wanting to find a datemate who will take care of them. Because honestly, if you're an autistic adult who can't live independently, and especially if you're perceived as high functioning, your options are not that good. If parents of autistic children think that they don't have enough services? That's nothing compared to the struggles for autistic adults who need services.

And when survival hangs in the balance, sometimes you have to make hard choices. Even if it means using someone else. It sucks, it's not fair, but the real problem is the society that forces people into that situation.

Friday, July 28, 2017

Comparing You to Your Oppressors

I was told once that comparing a trans aphobe to TERFs (based on their similar gatekeeping arguments focused around 'safe spaces' and their claims that oppressors want to infiltrate 'safe spaces' by claiming a related identity) was transphobic.

Personally, I don't think so. But I'm not trans. How would I feel if a similar comparison was made involving an identity I experience?

Well, if I ever start:

  • claiming that being a parent of a member of a minority group gives me more authority to speak about that group than actual members of that minority,
  • asking members of an oppressed minority to offer me 'proof' that they really are part of that group before I'll listen to their arguments, and refusing to believe said proof if it is offered,
  • claiming that my child is 'more' of a member of that minority than the members of that minority group that disagree with me, and using their disagreement alone as evidence,
  • claiming that I love my child but hate a core aspect of their identity,
  • claiming that my child has ruined my life because of something they can't control,
  • claiming that it's a loving act to put my child through dangerous and/or abusive 'treatments' to change a core aspect of their identity
  • pretending that I can read my child's mind, while adamantly insisting that my child's thoughts are really not very complex
  • and so forth,
then go ahead and compare me to a curebie! It's not ableist to say that I'm acting like a curebie if I start pulling those kinds of arguments out!

And similarly, if you start gatekeeping who belongs in an oppressed category based on the argument that the majority wants to infiltrate your 'safe spaces' by pretending to be oppressed, then you are acting like a TERF, and it's warranted to call you out on that.

Friday, July 21, 2017

Don't Tell Me It Made Me Stronger

Recently, I had a disagreement with a new friend, and it's got me upset.

I shared some of my experiences and my brother's experiences in school, and how they affected me, and mentioned that I want to homeschool my children. And they started talking about how adversity can make you stronger, and suggesting my children might be deprived.

I hate this line of argument so much!

Firstly, it's not true. Yes, mild 'adversity', like not getting a toy you want or having to do chores, does make you stronger. But trauma injures you, and leaves lasting scars. It also makes you more vulnerable in the future.

There are also a pile of unfortunate implications to the idea that trauma can make you stronger.

First, as my friend shows, it can be used as an argument to avoid protecting people from harm. I have even heard abusers argue that they abused their child to "toughen them up". A woman in Courage to Heal describes sexually abusing a child she was babysitting, because she figured it was inevitable that someone would abuse that child, and she thought doing it first would help lessen the harm when someone else did it. From a social justice perspective, why bother fighting oppression? It just makes the oppressed person stronger, right? Your oppressors are basically doing you a favor.

Second, it blames the victims who aren't stronger. My friend hinted that they thought people use trauma as an excuse. If you're supposed to be stronger for your experiences, and you're not, then what's wrong with you?

Third, what about the people who don't make it? There are people who've killed themselves for similar experiences to what my brother and I have experienced. What to make of their deaths, if adversity makes you stronger? Were they weak? Unworthy? Did they use their trauma as an excuse? Are they an acceptable loss for the strength others gained from their experience?

Don't dare tell me my pain has made me stronger. I'm wounded and struggling. I don't know if I'll ever be as resilient as most people who haven't suffered trauma. I am most definitely not stronger. Nothing excuses the harm that has been done to me, nothing makes it acceptable. I was hurt, it was wrong, and the wounds will never completely fade.

Friday, July 14, 2017

I Am Not Straight

I see a disturbing tendency for people who hate asexuals and aromantics to equate aroace with straight.

While I support het aces and het aros, to lump me in with them is frankly inaccurate and disrespectful of my identity. I'm not straight. Nothing about me is straight. I actually feel closer to being bisexual, because I feel equal attraction to males and females. (On questionnaires with only three options for sexual orientation, I select bisexual.) But I'm not bisexual either. Het aces, bi/pan aces and LG aces have more in common with each other than they do with me; and the same with aro hets, aro bi/pans and aro LGs.

Het aces, bi/pan aces and LG aces share with each other the following differences from aroaces:

  • a desire for a romantic relationship, and tendency to seek out romantic partners, often leading to involvement in the dating scene
  • greater societal recognition of their most important desired personal bond (although allo allos, and especially het hets, get even more recognition)
  • a tendency to buy into and perpetuate stereotypes that equate romantic attraction with love and humanity, and not being personally hurt by those stereotypes
  • an increased tendency to be pressured into having sex they don't want or having sex more frequently than they want to
  • increased risk of corrective rape (since many corrective rapes of aces are perpetrated by dates or romantic partners)
  • an increased tendency to be accused of withholding sex, tricking their allosexual partners into a sexless relationship, or shaming or abusing their partners by refusing sex
  • an increased likelihood of having their identity be medicalized and targeted by therapy
  • an increased tendency to be treated or feel like they're just "bad at being" an orientation other than asexual, or that their ace identity reflects incompetence at sex
Aro hets, aro bi/pans and aro LGs share with each other the following differences from aroaces:
  • a desire for a sexual relationship, and tendency to seek out sexual partners, often leading to involvement in the dating scene
  • a tendency to be stereotyped as predatory and manipulative for wanting sex without romance, and sometimes to struggle with internalized shame for this
  • a tendency to be slut-shamed, even if they are not sexually active, because people equate aro allosexual with having lots of casual sex
  • a tendency to get drawn into unwanted romances or one-sided romantic pursuit by people they desire sexually
  • a desire for a sexual queerplatonic relationship, in other words, a relationship characterized by strong emotional bonds and sexual activity but not romantic attachment; and ongoing difficulty finding people willing and able to be friends and sexual partners without falling in love with the aromantic person
  • less tendency to have their identity medicalized, because asexuality is more often seen as a medical issue than aromanticism is
  • an increased tendency to be treated or feel like they're just "bad at being" an orientation other than aromantic, or that their aro identity reflects incompetence at romance
Aroace is a separate identity, with unique issues. We're not straight. We're not a subset of any other orientation. And the combination of aromanticism and asexuality creates a unique experience, that is not shared by allo aces or aro allos. We experience intersecting acephobia and arophobia, as well as unique prejudice against aroaces specifically. Conversely, among people who don't accept the split attraction model, we're the only a-specs whose orientation might be respected.

Friday, July 07, 2017

The Sell Job: How Autism Professionals Milk Vulnerable Parents of Their Money

Vaccine conspiracy theorists say to 'follow the money'. But if you actually do, you find a very different conspiracy, one that they're actually supporting.

I see this conspiracy as something being done and supported by many groups, including traditional rivals. The goal is quite simple: to get as much money as they can from parents of autistic children. This is an incredibly lucrative thing to do, because many parents are willing to spend more on treating autism than they would on almost anything else. They are willing to open up a second mortgage, to travel long distances, to beg money from their communities, all for the promise of a cure. And they're willing to do this in large part because they've fallen for the marketing.

Autism treatment marketing is more often termed 'autism awareness'. People think the purpose is to make the public more understanding, but if that was the real goal, most of the autism awareness campaigns would be an utter failure. No, the real purpose is to create the image of autism as something that is devastating, something that will ruin your life if you can't stop it.

To do this, they use several tricks. First, they focus the public's attention away from the milder majority. I previously found several studies showing that 66-84% of autistic children have an IQ over 70. Therefore, a representative look at autism should have roughly 2-4 'higher functioning' children for every 'lower functioning' child - this is certainly not the ratio presented by most awareness campaigns!

Secondly, they misrepresent the developmental changes typical of autism. They focus on younger children, implying that most will have similar severity as they get older, even though roughly half of the 'lower functioning' preschoolers will be 'high functioning' by the time they reach school age. (Even in Leo Kanner's original paper, of the 7 children who had any follow-up done, 4 would be considered high functioning by most standards at the age they were last seen. Those four had adequate spoken language and were in regular schooling.) This allows them to take credit for any improvements, even if the rate of improvement is no higher than the rate among untreated autistic children.

Thirdly, they manufacture an increase in autism, by suppressing the existence of all but a minority of autistic adults, obscuring differences in rate of diagnosis versus rate of incidence, and outright claiming repeatedly that autism is on the rise. (It probably isn't, and certainly not nearly as much as they claim.) This has two effects - it manufactures more panic by implying that our society is headed for a new challenge as these autistic children grow up (when in reality we've been dealing with autistic children growing up for a long time), and it discourages parents from looking for lessons from the earlier generations of autistic people and their families, and therefore getting a more realistic idea of the prognosis of autism. For the mercury-autism branch, the claims of an epidemic are also used to bolster their claims regarding the cause of autism (even though this actually works against them as often as in their favour).

Once they've set up the panic, they offer the solution. This is where the different factions diverge. The two main groups I see are biomedical and psychoeducational factions.

The biomedical groups argue that some reversible biological state, such as mercury poisoning or exposure to certain foods, is the underlying cause of autism. As such, remove the proposed cause and the child will improve. Even if logically, the proposed biological condition should have caused permanent changes as well (especially with onset in early childhood, as it must have to cause autism), they will peddle hope in the form of their quack treatment.

The psychoeducational groups argue that specialised educational strategies, usually ABA (although SonRise and Floortime pull the same sell job with a different flavour), can literally rewire the child's brain to be more neurotypical. This claim, unlike the biomedical claims, actually has some support in the research literature, but it is distorted in two systematic ways.

First, the amount of change that can be reasonably expected is systematically exaggerated. This faction frequently presents higher functioning 'success stories' as if they were no longer autistic at all, benefiting from their lack of acknowledgement of higher functioning autism in awareness campaigns. Ivar Lovaas, generally considered the founder of ABA, defined an 'optimal outcome' as being in mainstream classes without an aide and having an average IQ - a characteristic that applies to many higher functioning autistic kids, including Kanner's four cases, while they remain clearly autistic. ABA research has also never followed up on recipients into adulthood, while anecdotal claims often describe adverse effects emerging as recipients of ABA or ABA-like procedures enter adult life (for example, excessive compliance leaving them vulnerable to abuse). In addition, they never acknowledge that the single biggest predictor of outcome in ABA is the child's initial functioning level, meaning that the 'optimal outcome' children were generally already the higher functioning kids when they started treatment.

Secondly, the importance of intervening early is overstated. To hear autism treatment providers talk, even waiting a couple months to a year before starting treatment could mean the difference between severe disability and normal or near-normal functioning. This is not true. The only research that finds a significant difference in outcome for ABA based on age at entry has 'early' and 'late' samples that differ by four years or more in age. And in most studies, age at entry and time in treatment are confounded. (And the lack of longer-term follow up makes it impossible to know if the difference carries on into adulthood.) The nice thing about this piece of the sell job, for autism treatment providers, is that it encourages parents to decide impulsively instead of carefully considering their options. It also increases the likelihood that the parents whose children would have improved anyway will get their kids into treatment before the improvement happens.

Thirdly, they emphasise intensive intervention, even though it's not actually more effective than lower intensity intervention. This high intensity intervention requires more hours of work from paid therapists (thereby increasing their profits), and also overworks the parents, keeping them in a state of desperation. Meanwhile, the stress and exhaustion results in more behavioural problems for the child, which the therapists use as evidence that the child continues to need the treatment.

If you're a parent of an autistic child, don't fall for the sell job! Seek out the stories of autistic adults and their families, and find out what worked for us. Look at their claims critically, and see if you can find evidence for and against what they're telling you. And always remember that your child is a child, not a crisis or a tragedy.