Autism in the Blood? Autism Parenting

Trigger Warning: Early Intervention, Possibilities of Eugenics
Leslie, the same person who wrote "How did I know my daughter was autistic?" and possibly "Wholeness and Completion" (unsure, but the daughter's name is the same and the writing has the same extra commas,) also wrote the final article of the December issue, "Autism in the blood?," discussing blood/genetic testing for autism.
For a blood test, the reasoning seems straightforward enough. If we can diagnose earlier, interventions start earlier. Considering what the current interventions tend to look like, that worries me. If the ways that we changed our educational methods for autistic children were ways that worked better for them, instead of making them more convenient for the teachers, parents, and caretakers, being aware that the kid is autistic sooner would be awesome. So this is a mixed bag for me. In an ideal world, this would be really cool. Just as a matter of curiosity, I'd love to know which blood tests currently can and can't tell that I'm autistic. But with the ways that autism is currently handled, I am not comfortable with giving them any information on my genetics that could help them figure this out. Get me a world where knowing you're autistic ASAP is definitively better, not for "acting normal" as most therapies prize, but for navigating a world not designed for you, and we'll talk. In a world where one of the things I am most grateful for is how long it took people to realize that I'm autistic? Not so much.
I still think that the "oh hey, more genes associated with autism means more evidence that autism is genetic" thing is cool, though. The more evidence we have behind genetics for how autism comes about, the better I can smash people who try to tell me that I'm vaccine-injured or something.
The other big worry I have, which wasn't addressed at all despite the fact that the study about it was mentioned, was the issue with prenatally predicting autism. Australian scientists really did develop a genetic autism test using 237 genetic markers that is 70% accurate for, well, white people. (Bayesian inference and an assumed 1% autism prevalence rate gives an actual 2.5% chance that a fetus that tests positive will be autistic. It takes 99% accuracy to make it a 50-50% chance that the kid who tests positive will actually be autistic given a 1% prevalence rate, for reference.) Since the Australian one was designed as a prenatal test, my worry, of course, is selective abortion. The idea of people aborting because the fetus is likely to have a brain wired like mine is terrifying, and it's not something the author is talking about. I envy her innocence, I think.
She's talking about tests and hoping to diagnose toddlers and getting them "closer in relation to their peers by the time they enter school." I'm reading that and wondering: "closer how?" If we're talking about getting whatever forms of communication we can up so that they have similar overall communication abilities (AAC is success here) then I am all in favor. If we're talking about looking normal, I am decidedly not in favor. I don't think we need to abandon all teaching for autistic kids, but I do think we need to be taking a look at what therapies we're using as a higher priority than getting potentially harmful ones to everyone. Take a look at the correlations between ABA and PTSD before we keep calling it the gold standard and getting everyone to cover it?
Increasing social and language skills is great. Make sure you know the cost of the teaching methods, and make sure it's social skills the way they are actually done, not compliance or the way you wish social skills worked. Compliance opens people up for a lifetime of abuse, the way you wish social skills worked isn't going to make them any more friends than the way they think it should work, maybe fewer. Their natural ones will at least work with other autistic people.

Autism Parenting Magazine December News

Trigger Warning: Mass Murder, Ableism
The two articles in the News section of Autism Parenting Magazine are getting covered together. These are a reference to Newtown and coverage of LEGO helping a 10 year old with Aspergers to get the LEGO set that he had spent two years saving up for.
The coverage of Newtown notes that the media has a tendency to sensationalize events. It also mentions that violent crime rates are similar between people with Aspergers and the general population and that most of the violent crimes comitted by Asperger's Autistics are actually property related. It even made mention of the fact that Autistic violence tends to be an immediate lashing out in response to an immediate stimulus, not premeditated attacks. While something premeditated is not mutually exclusive with any neurology, an Autistic one is not the cause.
Unfortunately, there seemed to be some passing of the buck to those with antisocial personality disorders. People with personality disorders do not need the extra stigma of being associated with mass murder any more than Autistic people do, and I hope that people not shift the blame to them, either.
The LEGO story, however, was quite good. The fact that the boy has Aspergers is really only relevant in that his participation in a LEGO playgroup is supposed to be good for his social skills (it probably is! Social interaction that people enjoy can have that effect,) and this is a story of customer service going above and beyond more than anything else. 

How did I know my daughter was autistic?-Autism Parenting

I am now going through the fourth article in the December issue of Autism Parenting Magazine. This one is "How did I know my daughter was autistic?"
It has some problems. First off, it goes with the old "something was wrong" kind of reaction. Autism is a disability, but that "I knew something was wrong" statement reinforces that we are inherently wrong. Knowing that development is atypical doesn't have that effect, but since it lacks the emotional impact that people seem to be going for with autism articles, no one ever says it like that. This is a problem. Among other things, it reinforces the concept that autism is something wrong that needs to be defeated and perhaps that it is scary and bad. That's bad for Autistic adults, and if you have an autistic child, you will someday have an autistic adult.
Secondly, not all autistic people have sensory processing issues. It's an overwhelming majority, but it is not 100%. False claims are false.
This is an issue I take with medicine in general, but a sensory difference does not need to be considered a dysfunction. Being able to spin for hours without getting dizzy, for example, is a sign of sensory processing differences, but it is not itself a dysfunction. I'd say it's an extra function.
In the description of her daughter as a toddler, I noticed several issues as well. Toddlers can and do have tantrums, but a 45 minute extravaganza is more likely to be an overload-induced meltdown. There is a difference, and continuing to call them tantrums as she gets older is a form of infantilization. There is also the assumption that she is throwing herself on the floor "randomly," which is highly unlikely. Just because a neurotypical parent does not understand the reason, that doesn't make it random. Similarly, there is a reason that that she would start hitting herself on the head or head-butting things, even if her mother doesn't know what it is.
Finally, in the conclusion she calls Asperger's a behavioral disability. That's not what it is. It's a different kind of neurology. It's a neurodevelopmental disability, specifically. Strange as it might sound, the behavioral issues that frustrate parents are not the core of autism, and are not the defining factor of what autism is. It's not all about the parents, and that is one example of making it about the parents and caretakers that I can't let slide, not even in a parenting magazine.

How to Get an Official Diagnosis

Trigger warning: brief mention of ABA and similar "therapies"

The third article I'm commenting on is, predictably, the third article of the issue. It's "How to get an official diagnosis."
That's an important topic, and for all this magazine is called Autism Parenting, this article is potentially useful to Autistic adults who are seeking an official diagnosis, either for the confirmation or in order to get needed accommodations.
The article provided a list of resources, including links to directories where a diagnostic service might be found and a link to GRASP. It also mentions the reality that many general practitioners are not aware of autistic spectrum disorders and what an Autistic adult would be like, acknowledging that many doctors are either unwilling or unable to diagnose adults.
There are, however, some problems. Like most parent-focused materials, this piece overemphasizes the importance of ABA and early interventions. While there are therapies that can help, ABA has some serious issues. Remember, the events described in Quiet Hands are fairly standard, and the cost of compliance is unreasonable. (No, I am never going to get tired of linking either of those two pieces. They are important.) I would have thought that adults who think they might be autistic would realize that therapy is not needed to survive, though I suppose that if they can be convinced that they must have "just Aspergers" and their kids are full-blown autistic, then they would once again believe the experts who hold these therapies in such high regard. That wouldn't explain the parents whose kids are diagnosed as having Aspergers, though.
Additionally, many of the online tests for autistic traits linked are problematic. The Autism Quotient, designed by Simon Baron-Cohen, is based on sexist stereotypes and the extreme male brain theory of autism, which is not an accurate theory. It also misses many Autistic people who actually have too much empathy and withdraw due to overload. This is a much more common issue than many people realize. The Aspie Quiz is largely based on the idea that autism comes from Neanderthal genes, also a false assumption, and should also be taken with a grain of salt. The Mind in the Eyes test is not an autism test, but it does not claim to be. It is, however, relevant in that recognition of facial expressions is something many Autistic people have difficulty with.
Finally, the article refers to Temple Grandin as having "overcome" autism, as opposed to having grown, matured, and learned coping skills as people in general are wont to do, along with mentioning Einstein as having the traits specifically of Asperger's. He had a speech delay. If he was autistic, it was classic autism, not Asperger's. Don't try to pretend that all Autistic achievements were made by Aspies. They weren't. (I suspect there is a reason that Chinese people have a proverb about people who are late to speak being smart. My suspicion is that they are talking about hyperlexic classic Autistics.)

Wholeness and Completion-Autism parenting

My next Autism Parenting Magazine article is the next one from the first issue. (Find the first article's commentary here.) This one is called "Wholeness and Completion," and it is about routines and sameness. It is written by the mother of an autistic girl (Asperger's specifically) who has learned the usefulness of some routines along with how to accept the routines that she has trouble seeing the use of.
This article is very much based on the perspective of one parent raising one autistic child, but she says so, making it clear that she knows it will be different for every autistic person. It will, of course, but it's nice to see a parent mention this while talking about their own kid instead of reminding an Autistic adult who spends a lot of time with other Autistics of this fact in an attempt to silence them. That one happens too much, and parent-focused as this article is, it at least doesn't do that.
She also used identity-first language. Not consistently- she switched back and forth, but she used "autistics" as a plural noun, even. My guess is that this author has done at least some reading of Autistic adult work, since she knows that "autistics" as a noun is not taboo.
One of the routines that she found some use in (eventually) was the one where her daughter always walks to the end of the sidewalk and then stays there. She won't step out into the street until the bus is there, because that's not how the routine works. Giving examples of how routines can be helpful is one of the things I liked about this article.
The were some things that I didn't love, though. I don't think a parent should insist that clothing matches. Insisting on weather-appropriate garb for a young child (I get the impression that her kids are still very young, considering that they are still only in half days) makes sense, but it really doesn't matter if clothing matches perfectly. It's one of those things where teaching kids that they have some autonomy is more important than the impression you are trying to help them give, especially with an autistic kid. I say especially because people spend a lot of time teaching autistic people that they don't have autonomy and that what other people want always matters more.
I also wasn't a fan of calling the obvious uses a "light at the end of the tunnel." Routines are a fact of life for us, and it can't be separated into a tunnel of frustration and a light of usefulness. It's a complete package, and it's more useful than anyone who doesn't need the routine can imagine.
Finally, there was no reason for "In no way, am I suggesting that you stop cutting your child's food" to be a highlighted sentence. Frankly, it's not even a needed sentence in the article. It and the following sentence could be much better written as "If your child is old enough that not cutting their food is an option, it may be worth considering." (Yes, she does immediately suggest not cutting food right after saying that she's not. Consistency is important, and I can be a picky editor for style when I'm not too frustrated with content.)
Overall, I thought this was a pretty good article with a couple of fairly small flaws. I definitely liked it better than the sensory processing disorder one, which pushed therapy and treatment heavily.

Sensory Processing Disorder-Autism Parenting

Autism Parenting Magazine is now a thing- it's available on the iPad (yay, I got one of those for graduation.) Of course, it is heavily from the perspective of parents, since it is a parenting magazine. As such, I'm not going to fault it for the fact that the articles are all directed at parents. I will, however, be reading every article from at least the first two issues that I can get for free and possibly continuing past that point. At $2.99/month, I think I can find out what it is that parents are being told they should do and explain why it's wrong. (Yes, Autism Parenting Magazine, you're going to be wrong about many things. Just looking at your cover tells me that.) Every article is getting, shall we say, corrected.

I begin with the first article. It starts on page four of the December 2012 issue, the first ever, and its title is "Sensory Processing Disorder."

The first thing they did wrong is make an article in Autism Parenting claim to be just about Asperger's when it is really about the whole Autistic spectrum and some people who aren't even on the spectrum. Something like 80% of Autistic people have sensory processing disorder (SPD), and that holds across all of the subsets.

The initial description of SPD is reasonable, though the anxiety, depression, and school failure described as being possible results "if the disorder is not treated effectively" are quite easily results of many of the therapies used to "treat" SPD as well as possible problems that people with SPD can face. Be very wary of most treatments, as the most effective thing to do is generally to try to avoid sensory triggers. Occupational therapy can be helpful in some cases, but finding ways to avoid triggers (some of which were listed, and those methods are good) is often the better choice. Additionally, while hypersensitivity and hyposensitivity are, in fact, common issues, many sensory processing differences are not as simple as hyper and hyposensitivity. There is also sensory seeking and sensory avoidance, which may or may not match up along the hyper and hyposensitivity lines that you might expect. A person can, in fact, be sensory seeking for something they are hypersensitive to because the sensation is just that good. It can also be more complicated than simple hypersensitivity and hyposensitivity for senses as a whole by way of being more or less sensitive to single sensations, such as my hypersensitivity to mint and hyposensitivity to spices. Both are oral sensations, so calling me simply orally hypersensitive or orally hyposensitive would be incomplete.

As a first introduction to sensory processing disorder, this article is fairly good, though it should make it more clear that this is an autism issue in general as opposed to being just an Asperger's issue and put more emphasis on finding ways to avoid triggers rather than occupational therapy, which often involves forcing triggers onto people while they melt down until it doesn't make them melt down anymore, as in the case of brushing. Some people with sensory processing disorder may, in fact, like brushing, but if it is painful, it is painful and is not acceptable to do to a child.

And finally, here are a few tricks for SPD that I think are important but were not mentioned in the article:

• Mint is actually a pretty common issue. It's a strong sensation, and people either love it or hate it, and a lot of people with SPD fall into the "hate it" camp. Toothpastes that are not mint flavored may be harder to find, but if mint is an issue, this is more than worth the time. Flosses that are not minty may also be a good idea.
• Sometimes knowing that a sensation that triggers sensory issues is coming ahead of time can help. If so, having "gets advanced notice of fire drills" or "is seated facing the clock" as accommodations can help.
• Try all different kinds of toothbrushes. Electric ones are actually worse than manual ones for me, something about the vibration.
• Bring snacks with you, so you can still eat even if all the food you are provided with contains sensory badness.
• Carbonated beverages can be painful. If they are for you or for your kid, bring water or something else you can drink. You have no idea how many times I have gone to social events only to find that every beverage they offer is carbonated, and I can't drink them. Even shaking and stirring to try to make them go "flat" isn't enough.
• If hairbrushing is an issue, get a haircut. Comfort is more important than looks, and anyone who tells you different is to be laughed out the door.
• Certain fabrics can be problems. Which ones will vary from person to person, but don't try to make someone wear a fabric that is a sensory issue. Finding different clothes is worth it.
• Strobe lights can be extremely disorienting, even for those of us who are not officially considered photosensitive. It's not the same level of big deal for us as for a person with photosensitive epilepsy unless we actually have photosensitive epilepsy, but it's still good to avoid. Turn flash off if this is an issue.
• Unscented soaps and deodorants are your friend.
• Tight clothing may be a problem. If so, do not force your kid to wear stockings, leggings, or other tight clothing. Comfort is a prerequisite to being able to function, and it's still more important than looks.
• Footwear can also be interesting. Many people do best with crocs, some with sandals, some barefoot. Try different things if shoes are a problem.
• Along the lines of footwear, some people just can't wear socks. If this is you or your kid, choose shoes accordingly so that you don't get blisters.

• Short of legal regulations such as requiring shirt and shoes to be served and the issue of indecent exposure, all dress codes can be modified for disability. It's no different from the person who has a doctors note saying that they have to wear sneakers instead of dress shoes.
• Carry a stim toy, always. By stim toy I mean something you can use to get a sensation for which you are sensory seeking. Maybe carry multiple. Certainly have one that can be used discretely.
• Puberty doesn't make SPD go away. Whatever the requirements for clothing may have been, expect it to continue, and expect either the same requirements or stricter ones to apply to any new undergarments.