You just don’t get it

A few summers ago, right in the middle of my graduate programme, I was hit with Mono and Lyme. Taking a shower was exhausting. I kept falling asleep in statistics classes, and in the lab where I tried to work. Putting thoughts together in any of my research analysis or writing, or even learning new concepts, was like stringing beads while wearing heavy ski mittens.

Even after submitting a letter from the doctor to my department head, he couldn’t understand why I couldn’t get things done, and when he did see me around, why I was staggering around and looking like “death warmed over”. He was of course, operating on the Willpower/ Mind Over Matter principle, where all one really needed was just More Determination. (And this was even in a biological science, where you’d think they would have some kind of clue!)

I got over the diseases. A couple of the most important things I learned from that whole experience were tied to Paula Kamen’s lovely book, All in my head: an epic quest to cure an unrelenting, totally unreasonable, and only slightly enlightening HEADACHE”. One important thought is: “There is a difference between getting cured and getting healed.” Another is: “Acceptance is not the same thing as resignation.”

I also got a crash course in how little empathy some people have in real life, compared to the words that come out of their mouths. Of course, it was hardly the first (or last) time I had experienced such in life, just an event when things were painted with such broad strokes.

Weird thing is, the official word is that autistics lack empathy.  That’s the line, but there are plenty of people who beg to differ.

In an NPR interview, Temple Grandin had this to say about empathy:

Normal people have an incredible lack of empathy. They have good emotional empathy, but they don’t have much empathy for the autistic kid who is screaming at the baseball game because he can’t stand the sensory overload. Or the autistic kid having a meltdown in the school cafeteria because there’s too much stimulation. I’m frustrated with the inability of normal people to have sensory empathy. They can’t seem to acknowledge these different realities because they’re so far away from their own experiences.

Unlike someone with Antisocial Personality Disorder (sociopathy) or Narcissistic Personality Disorder who truly does lack much real empathy, the autistic person does not really lack empathy. Rather, they do not respond in ways that demonstrate empathy in typically recognisable fashion. This is in contrast to those sociopaths, bullies and narcissists that may demonstrate a lot of the shallow social-noise that appears to be sympathetic, but on the deeper level is really more about manipulation to gain something for themselves, rather than true empathy.

Just because someone doesn’t respond in the expected manner, that does not mean they lack the feelings we associate with those responses.

The term “empathy” is one of those words that carries several meanings, and is used in different ways. This conflation of meaning results in things like this issue of the Asperger’s/autistic person being described as “lacking empathy”. Plenty of parents, spouses, other family members and close friends will assert that despite diagnostic criteria, their person “really is loving” and “shows empathy” and demonstrates both passion and compassion.

So what’s going on here with this definition, and in the person?  Things like: Read the rest of this entry »

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Depiling

That is, de-pile-ing*.

* Not to be confused with depilling, which is trimming off those annoying “pills” that form on knitted garments. Presumably those wee balls of fuzz form due to the blasted orneryness of the universe, especially with regards to the cosmos’ dreaded knack for providing supplemental stress to anyone with OCD tendencies.

Depiling means to systematically remove piles of clutter.  On my desk, that means not just the usual bills, statements and paperwork, but also:

  • documents to be scanned,
  • Copy Center requisition forms,
  • old appointment cards and unnecessary receipts unloaded from my pockets and other ephemera,
  • 35mm slides to be scanned,
  • an empty postage-stamp strip,
  • wire twist-ties,
  • caps to ball-point pens I don’t even use,
  • hort industry infomercials masquerading as press releases or “educational materials”,
  • spare tins of lip balm and cuticle salve,
  • important receipts to file,
  • a really cool concave rock to use as a water dish when I refresh Rosie’s habitat,
  • the booklet on Inservice courses for Job #2 that I cannot attend because of Job #1,
  • beads that are still surfacing from when the curtain tie-back snapped last month, Read the rest of this entry »

Prescription for Thought

This belated post is especially for Debora, who asked for my impressions about ADD/ADHD medications for children.  (Disclaimer: I am not a doctor, nor do I play one on television.)

Medicating kids or adults for ADHD is a sticky topic.  Everyone has opinions!  Like many topics of heated discussion, usually everyone has several good points to make, and there are always a few people who take things to absurd extremes.  So let’s look at these points individually.  (I’ve boldfaced the points, so if you’ve already reached a state of analysis on that point, you can skip to the next one.)

Does ADD/ADHD even exist?  Is it just some scam made up by drug companies to make money?

Some years ago I received an email from someone who had decided the latter. I replied back with the following, which I have updated to reflect new information: Read the rest of this entry »

More “Trap Bias”

Whenever I read statistics about the “increasing rates of autism”, I heave a big sigh. Those statements invariable contain a whole number of assumptions, many of them flat-out wrong, or at least unexamined. In the epidemiological data, there are diagnostic issues and census issues and statistical issues and of course, the inevitable agenda issues in the reportage of the census results and analyses. I’ve previously discussed a number of these problems, including incidence versus prevalence, and correlation versus causality in the post, “Epidemics of Bad Science vs Epidemics and Bad Science”

What I would like to address today is a related issue with diagnostics and perceived prevalence, meaning, “How do we know who has autism or AD/HD or a learning disability, and how many such people are out there?”

In entomology (and in other zoological branches) we have a concept known as “trap bias”. There are a number of ways of taking a census of an animal population, including using traps. A “trap bias” means that the kind of trap you use to census a population will limit the responders to your census, and thus create unintended biases in the results.

Now, if a few synapses in your brain just fizzled from that wordy definition, let’s try a simple example. Read the rest of this entry »

Epidemics of Bad Science vs Epidemics and Bad Science

Here’s a hot topic constantly resurfacing in the news, especially with the Omnibus currently proceeding at the US Court of Federal Claims, to wit: Is autism caused by vaccines? I won’t pretend that I’m going to capture everything in this controversy; there are too many players in the drama. (Autism Diva is keeping track of the daily news on the hearing.) However, this does make for an excellent case study in the scientific method. We get to look at concepts like incidence & prevalence, correlation vs causality, testimonials vs evidence-based medicine, and some general concepts in epidemiology. Could we possibly have any more fun?! (tongue-in-cheek joke)

When you read about autism, something noted most everywhere is the increasing numbers of children diagnosed. Surely, people say, there has to be something causing that to happen!

The whole vaccines-causes-autism story starts back in 1998, Read the rest of this entry »

What I Learned From the Bugs: Alienation and Othering

“Great truths are sometimes so enveloping and exist in such plain view as to be invisible.” ~Edward O. Wilson

I went to study Entomology, and four years later found that I had discovered far more about my own species than I had about insects and other arthropods. What I learned about humans was enlightening, and often very disquieting.

Frequently, if you can’t see something, it’s because it seems normal and appropriate. Alienating and Othering so permeates the many facets of culture as to be invisible.

Take for example writings about people, either individuals or groups. These can be works of fiction, clinical accounts, self-help or parenting or therapy books, historical or sociological analyses, in fact, any sort of book whatsoever that refers to people with differences. (I was going to say “differences from the norm” but we also find this in books about women, and surely half the population has to be considered a “norm” from a sociological if not a statistical perspective.)

Frequently such accounts use the omniscient writing perspective, which makes it very easy to Read the rest of this entry »

Whining From Another Hysterical Female

Don’t get me wrong — I’ve actually had good results with most of the professionals whom I have seen. It would be rather a fallacy to broadwash a whole bunch of specialists on account of a few fools. But boy, when you run into an fool, it’s usually a doozy!

It’s been a long few years getting various difficulties sorted out and identified. Over a year ago I saw someone who was touted at being an expert on learning disabilities, to investigate ongoing scholastic difficulties and possible auditory processing difficulties.

Well, I saw Dr S. (a PhD, not physician) when I was otherwise free from the bulk of my work and school activities, as at the time I’d been having a number of health problems, including insomnia, migraines, worse tics and stuttering, hyperacusis & tinnitus et cetera.

I brought in with me documentation including previous test results, transcripts, and descriptions of my difficulties. This was because I can often get tangled up and forget stuff when trying to explain things, especially to doctors. (Hey, I’m an organism capable of learning — over time I’ve realised that remembering stuff is a problem, so now I take in a list or hand over a page of notes. My new primary physician does great with this, because in the couple of minutes it takes her to read a few paragraphs, we can fast-forward through a lot of rote questions, without omissions.)

Dr S. had me fill out a couple of online tests, and then had someone else administer some more tests to me. Oddly, one of the tests he gave me was for ADHD, for which a coöperating team of a psychologist and psychiatrist had already evaluated me. In fact, he said I had no ADHD and no real problems, except a little figure-ground discrimination hearing things in noisy environments. He had no recommendations, except that I needed to see a psychiatrist for psychosomative disorder.

Well, hell. Was I bordering on depression? Yes, and I knew that and was working actively against that — half a year of chronic sleep-deprivation and pain will do that to a person. Was I having difficulties with my husband? Yes, my health problems were requiring me to take a semester off school and work, and he was wanting to know “when I was going to be a productive member of society”. I already knew about these things, and had explained to Dr S. that I was working to deal with them. But that wasn’t why I was seeing Dr S. — I was trying to address learning and hearing comprehension problems. I even paid a few hundred dollars out of pocket for all that.

There’s a big problem here, and it’s not mine. Nor am I the only one with it.

The word “psychosomatic” has gotten warped or twisted. It literally acknowledges the interdependency and functionality of brain/mind and body, but now has come to mean that problems are “all in your head”, as in imaginary and/ or self-inflicted.

They used to call women “hysterical” and thought it due to having a uterus that “wandered around the body”. Holy cows. Obviously I’m not hysterical. (Hell, I don’t even have my uterus or ovaries any more, due to cysts and endometriosis.) So now they say that women who have problems have “psychosomative disorders”.

The issues with my husband were not seen as his difficulties in accepting my disabilities, but as evidence of my mental disorder.

The near-depression I was facing was not from months of chronic insomnia and pain, but rather caused by my mental illness.

The documentation I had brought with me to aid the man in his understanding of my problems was not data, but symptoms of my mental illness.

I was seen as “attention-seeking” rather than as solution-seeking.

Shit like that can drive a person nutz.

The good news from all that was that I got a referral to a CAPD specialist who said that Yes, I definitely do have such problems, and could even recommend some concrete ways of dealing with the problem and gave me documentation for such. But it makes me wonder, if Dr S. couldn’t really diagnose such, why did he put me through tests for APD, and tests I didn’t need for ADHD?

Has it ever occurred to clinicians that many of their clients don’t exhibit stress symptoms due to having psychosomative disorders, but rather than having various (unacknowledged) disabilities will make a person stressed?

It’s all ass-backwards. Shit like that can drive a person nutz.

Psychiatric dysaethesia

We recently rented the video C.S.A., a mockumentary about the semi-fictional history of when the Confederate States of America won Civil War/ Northern War of Aggression. It’s a profoundly (and appropriately) disturbing film on a number of levels. This isn’t a film review, so you can look up more details about it on Amazon, the IMDB, or the official film Web site. It’s a hell of a good video, in the literal sense.

What makes good satire and mockumentary is the admixture of fiction and reality. Fiction (especially science fiction) provides the distance of unreality for us to be able to think about and discuss things that are often too difficult to deal with in full-blown reality. Reality-Lite, as it were. Not that there is anything “Lite” about slavery and the numbers of other issues woven into the story line.

But on blog-related matters, this flick gave me yoin, which is a Japanese word referring to the ongoing internal reverberation you get from something, even after the moment has passed. They made mention of Drapetomania, and apparently this was one of the reality-nuggets. There it is on Wikipedia:

“Drapetomania” was a psychiatric diagnosis proposed in 1851 by Louisiana physician Samuel A. Cartwright to explain the tendency of black slaves to flee captivity. As some slave owners felt they were improving the lives of their slaves, they could not understand the slaves’ desire to escape.

There’s not a great deal of discussion of this; the entry also explains,

The diagnosis appeared in a paper published in the New Orleans Medical and Surgical Journal, where Dr. Cartwright argued that the tendency of slaves to run away from their captors was in fact a treatable medical disorder. His feeling was that with “proper medical advice, strictly followed, this troublesome practice that many Negroes have of running away can be almost entirely prevented.” Cartwright proposed whipping as the most effective treatment of this disorder. Amputation of the toes was also prescribed.

Cartwright also described another disorder, Dysaethesia Aethiopica, to explain the apparent lack of motivation exhibited by many slaves, which he also claimed could be cured by whipping.

Wow. So here we have this doctor ascribing a natural human reaction to having a psychiatric condition, and also prescribing the “appropriate” treatment for such. We can easily imagine some alternative history where drapetomania is a regular entry in the DSM. After all, homosexuality used to be included in the real DSM.

Not every reaction or experience in the human condition is a psychiatric problem, syndrome or disorder. The DSM is useful as dictionary — it’s difficult to discuss things when people aren’t even talking about the same things, so some kind of mutual definition is necessary for a start. We also have entries that go from descriptions of the problems people have in life into the realm of Named Conditions.

Take ODD: Oppositional Defiant Disorder. Yes, there are people who are short-tempered, argumentative, annoying, refuse to follow rules, blames others for their problems, are tetchy and so on. This is a definite set of bad behaviours, and there are some people who seem to be entrenched in acting these ways to the point that it seems to be a regular part of their personalities. Do real people act like this? You bet; some of my students act like this. But is it an actual disorder? Some kind of neurophysiological problem?

That I’m not so sure about. There may well be some kind of, or several kinds of actual conditions that can result in a person acting like this, but that’s not the same thing. ODD is a good description of someone who is handling themselves badly (for any number of very real reasons), but I wouldn’t classify it as an actual “thing”, a neurophysiological problem. (Then again, we may find some kind of weird dysfunction in the brain caused by genetics or some yet-nameless virus or prion. Life has a way of throwing us curve-balls on a regular basis.)

Is every reaction to problematic aspects of life worthy of being identified as a morbidity of some sort, and assigned a billing code for the benefit of insurance companies?

The other disturbing part about “drapetomania” is the telling politics of power. You see, only Negroes were afflicted with drapetomania. Only gays and lesbians were afflicted with homosexuality. Once homosexuality is removed from the DSM as a disorder, then we suddenly have millions fewer patients with “mental illness”. No one was “cured” — they just weren’t considered ill any more.

When we find that we can’t understand why someone does what they do, does it really mean that they gone ’round the twist in some way? Or are are they just reacting to what might be an intolerable condition that we’re not properly recognising?

On Behavioural Observations and Assumptions

Traditional ways of understanding processes

Often science has taken the approach of understanding how things work by examining situations in which things don’t work, or in which they work differently, e.g. mutations in Drosophila flies or Arabidopsis plants, or disease processes. On one hand, these situations help reveal the mechanisms / processes by showing us where to look, and by giving us a comparison for what does or does not happen.

For example, when we have plants infested with insects, sometimes we see the insects (often we don’t see them because they hide on the undersides of the leaves; insects are not intelligent, but they aren’t stupid either), sometimes we see signs of the insects themselves (such as frass, a technical word for insect poop), and sometimes we observe or measure the symptoms caused by the insects’ feeding (such as red discoloration on sorghum from greenbug aphids).

When we have people infected with diseases, we can also see the outward signs or the symptoms reported by the patient, but we cannot see the disease itself. If the disease is caused by an organism, such as a bacterium, fungus, or virus, we can see the agent, but that is not the disease. The disease rather is the mal effect upon proper functioning caused by one organism upon another*. Diseases can also be autonomic, caused by something from within the organism itself; diseases in this sense are processes gone wrong.

Technically, something is a disease if it has a predictable set of symptoms, with some sense of the cause of those symptoms, and the physiology of how they are expressed. If the cause or the physiological dysfunction is unknown, it is not a disease, but a disorder. When repeated sets of symptoms are observed, they are referred to as a disorder. Although some disorders may be treated pharmaceutically, they are not diseases.

We cannot see the disease itself, rather, the disease is something inferred by the observations and dialogue between the people with and people without the disease. In contrast, a disorder is often only discerned by the people without such, because it is defined by comparison; order is defined by like, and disorder is defined by not-like. Diagnoses are defined by relationships and perception as much as, or even more so, the physical states.

Limitations of inference

When we have people who are autistic (et cetera), we diagnose it likewise by the “signs and symptoms” or the observable data of the behaviors. What we cannot necessarily determine are the causes of those behaviors. It is an accepted fact in some disciplines of science (such as ecology) that the specific process cannot necessarily be determined by the end results! We can hypothesize several likely causes, or series of causes that would produce the current situation, and we can do experiments to test if we get similar results, but those experiments do not guarantee that the specific causes and processes are what caused the current situation.

Quite frankly, our ability to understand what is going on is limited by both our ways of thinking, and by our abilities of perceiving the world. Ethologists who study animals are more often aware of their inabilities to share the same perceptions as their subjects than are behaviorists, because it is more obvious that the Umwelt (perceptual world) of a honeybee is different than that of a human being.

What we can discover is determined by how we approach the problem conceptually as much as by the methods we use, or by the data we gather (i.e., “If the only tool you have is a hammer, all of your problems look like nails.”)

A person who assumes that the behavior exhibited by another person results from a particular set of sensory inputs and mental processing, is therefore going to be limited in, and also sometimes erroneous in their understanding of that behavior. Five different people can do the same thing for five entirely different reasons. For one of them to assume that the others do the same thing for the same reason they do is a kind of egocentrism. In this way, the much-vaunted neurotypical “theory of mind” that allows people to guess others’ motivations by implicit information can actually lead them astray, because they assume that others do things for the same reasons they do.

Conversely, when people do not see the expected behavioral results from certain circumstances, they can sometimes misunderstand what is going on and why. If several people laugh at a television show and I do not, they may assume that I do not have a sense of humor. In truth, I have a well-developed sense of humor, and will spontaneously giggle at things I remember, or jokes I remember and re-tell to myself, or laugh from other television shows, but I do not always find the same things funny that others do. In this case, their conceptual limitations prevent them from understanding alternative causes.

Even if all the information is present to be observed, and even gets recorded through some miraculous accident of experimental design, the underlying causes and effects may still be hidden because the observer has neither the intent nor the capacity to notice and understand it. We can only answer the questions we ask, even if additional answers are there in front of us. Likewise, if we ask questions the wrong way, we will not be able to learn the right kind of information.

The current mode of research has derived from the pathology model, where we try to figure out what goes wrong. This is not bad. This is a necessary approach, in many ways. But it should not be the only approach. One of the best ways to figure out what we should do, and what does work, is to examine the successes!

Problem 1: warped perspective

It is because of the historical origin of psychology, (it stems from studies of mental problems) that the dominant paradigm is “average = normal”. Much of the diagnostic phrasing is focused on disorders, and it tends to pathologize what is different from the norm. If you don’t fit within the boundaries, then something is wrong with you, not that the situation doesn’t fit you.

On the other hand, these situations also tend to give us a warped perspective. The warping stems from the fact that identifying processes by “broken-ness” gives one a “Dysfunction” – and dysfunctional – view of the universe. Things working = function = normal. Things working otherwise = not working = dysfunctional = abnormal.

To follow the disease model is not correct because average is presumed to be equivalent to normal. Actually, “normal” is a value-laden word, because “normal” means both “average” and it means “okay”. Abnormal means not-average and not-okay. It is a false dichotomy to assume that not-average means abnormal!

There are those who deny the appropriateness of difference; one must do their best to fit it and not be different to be okay and accepted. I am different in many ways, many not visible. One difference is visible: I have fair skin and rather than tanning, will freckle and easily sunburn. This is genetic. Because of this genetic difference, I exhibit different behaviors than do most of my peers. For example, I do not use tanning beds or lay out on beach towels to sunbathe, and will do my field work clad in a brimmed hat, sunglasses, bandanna, long-sleeve shirt, cotton gloves with the fingertips trimmed off, long pants, and socks. The average person does not wear this much clothing when outdoors on a 104° F/40°C day; however, no one would say that I am “abnormal” for exhibiting these behaviors. These behaviors are appropriate and healthy for someone of my genetic makeup; they prevent me from stressing and harming myself. These behaviors do not create problems for others, and only create social disturbance because they are uncommon in some social realms. There are no, nor should there be, any negative value judgments attached to behaving differently than my peers because of this genetic difference.

I am also sensitive to noise, especially chaotic or high-frequency noises, and will in some situations wear ear-plugs, withdraw to a corner, or limit the frequency or duration of my visits to certain places. These behaviors are appropriate and healthy for me; they prevent me from stressing and getting severe headaches. In contrast, these behaviors are considered odd or unacceptable, but without them I can end up twitching, grimacing or swaying from the noise stress, and these reactions are considered even more unacceptable!

Then there are those who deny differences exist as real differences, and that if one cannot achieve things in the same way or at the same rate as “everyone else”, then they just are not trying hard enough or are stupid. People with AD/HD (et cetera) are simply “making excuses”.

“Everyone else” is an interesting myth of self-contradiction; it assumes that everyone is the same, while at the same time acknowledges the fact that one is not the same. The myth of “everyone else” makes the different person responsible for the having and resolving the problem that others create. The meta-issue here is that the person’s difference is not the problem – the others’ lack of acceptance is the problem! I do not “suffer” from any number of differences I have, I suffer from the lack of acceptance and understanding of those differences and how I can best function.

The unsavory alternative to people rejecting differences can be their amazement that people can accomplish things “despite” disabilities. Imagine during World War II, when in the US women went to work in factories. That women had competently done hard manual labor in factories in previous decades was often forgotten (the working poor or various ethnic groups didn’t count of course); instead there was amazement and collective self-applause because my goodness, women not only wanted to do factory work (how noble! how patriotic!), but could even do the factory work and do it well (how extraordinary). Those women workers who could perform well were an inspiration, they could overcome their lack of mechanical expertise, or inherent female weakness or even the fact that they suffered from monthly hysteria. Of course, after the war was over, the women were to cheerfully return to their kitchens and let men do the “real” work; factories wanted their normal, able workers. Of course, such attitudes seem dated and silly now; there is nothing amazing about women working, just people with “disabilities” getting college degrees or married or having families or working or …

Problem 2: assigned motivations

Another problem with the current model is that it tends to assign motivations that do not necessarily exist. For example, someone offers to share with me a slice of his or her home-baked, fragrant, pecan pie. If I smell the pie and love to eat pecan pie, I should [want to] eat the pie, shouldn’t I? But behavior is not merely stimulus-response; there is also the previous history of the organism, the perceptual realm, the mental processing, and the current state of the organism. For example, previous experience may lead me to drool when I smell pecan pie, but if I am not hungry then I will not have this reaction. If my nose is stuffy from a head cold and I can neither smell nor taste much, then I won’t have this reaction. If the offer of pecan pie comes with the additional requirement of staying and eating it at an intolerably noisy-busy lunchroom then I may also decline to choose to eat the pie. The person offering the pie may imagine a whole variety of motivations for my refusal of the pie, including suppositions about my judgment of their ability to cook good pies, or my desire to socialize with them. These motivations are imagined, and do not necessarily exist!

Problem 3: disemphasis

Although my differences affect what I do and how I do things, they do not exist separately from me, nor they responsible things, e.g., my ADHD is not “being bad today”. I may be judged “unsocial” when rather I am adverse to be in crowded, noisy places. This actually transfers my real or perceived motivations from my thoughts and my actions, and assigns them to the “unsocial dysfunction”.

The problem with this is that it changes the emphasis of thought from who I am and what I need to “what my problem is” and “what treatment my disorder requires”. Just as hospital patients run the risk of not only acquiring not only nosocomial infections, they also run the risk of being identified by or replaced by and treated as their maladies, e.g. “the COPD in room 243”.

Lacking diagnoses (and attendant “treatments”) for many years, I cannot say what my life would have been like had I been considered to be a child student with disabilities. I can say that missed diagnoses are just as bad as mis-diagnoses. I can also say that as an adult, the time I must spend getting diagnoses done, paperwork filed to “prove” such (it’s not real unless someone else says so on paper), making arrangements for “accommodations” (one must be very “special” to have enough time to finish a test, and to take it without a lot of distractions), having to go through the schedule re-arrangements required for such, and all the other stuff rather detracts from other things I could be doing, like studying or lab work. This really improves my ability to be a good student, right?

* If disease rather is the mal effect upon proper functioning caused by one organism upon another, could we then assert that some teachers/ clinicians/ social workers cause disease in autistics by interfering with their normal functioning?

Trials and Tribulations

People whine about how hard it is to have an autistic child, or any kind of exceptional child. All too often there are terrible news reports about parents who have killed their handicapped or autistic children because they were such a horrid burden. Even more horrifying is when the press perspective or quotes are full of sympathy for the murderer because killing your own child is “understandable” because a person can’t help but be insanely stressed from dealing with the child’s abnormality. Excuse me; that should be the alleged murderers; trials haven’t happened yet for several of these cases.

Holy shit! Parenting is hard. Period. Yeah, there are bad days. Some days you feel like you’ll never get to eat your food at the proper temperature, or go potty or take a shower uninterrupted, or sleep through the night. Some days you feel like you’ll never finish the endless assessments, or learning more about the alphabet soup of ADHD, APD, ASD, TS, DSM, IEP, or attending special school meetings. Some days you feel like you’ll never get through the little chats with the police officer on your doorstep, or the hormonal teenager angst, or the getting homework done and turned in so the grades reflect a little of the smarts behind the scholastic ennui.

Amazingly, this is true regardless of what sorts of kids you end up with.

It’s true that there are some problems with autistic children that one doesn’t have as often with neurotypical children. There are also problems with NT children that one doesn’t often have with ASD children (when was the last time you read a blog by a parent sighing over how their autistic kid wanted to invite two dozen kids for a birthday party at Chuckie Cheez followed by a sleepover?) Different is not worse.

Aspie kid was a “runner” as a toddler. With my faceblindness I have great difficulty finding people in crowds; tracking down a small child that has bolted into the mobs of people at a mall would have been dangerously slow. Thankfully my other kid was four years older and could help me. I ended up having the tot in one of those child-harness & leash setups when we went shopping. People would give me dirty looks because I was a “horrid mommy who put their kid on a leash”. Frankly, I was a concerned mommy who wanted to keep her kid safe, because this child was fast, strong and inclined to dash off when intrigued by something.

There were also meltdowns, which being unaware of autism at the time, were to me simply “being too tired” and/or “having a tantrum”. So I ended up figuring out what the triggers usually were, and finding ways of circumventing those. We also learned how to calm down, and how to recognise when things were starting to get to be Too Much. I also learned the fine art of calmly saying, “Having a temper tantrum is not going to make me change my mind. When you calm down, then we will shop some more.” (I used a lot of If-Then and When-Then constructs when dealing with my toddlers; they could understand the binary constructs, and it helped them make sense of cause and effect.) Of course, passers-by would want to intervene and try to comfort/appease the child or chastise me for having a crying, floor-kicking kid on the grocery aisle floor. I also acquired the other fine art of smiling, nodding, and reassuring them, “It’ll be okay in a minute or two.”

This child also had/has distinct clothing and food preferences. Some relatives called this “picky”. I thought of it as merely having … preferences. I like my clothes or my food a certain way; why wouldn’t anyone else?

Sure everything was all about orcas when younger. Sure made gift-giving easy. Now it’s videogames (shocking, I know). Sure makes gift-giving easy. (Unlike dad, who has neither perseverations nor any particular hobbies; is that just so weird, or what?!)

Different is not worse. It’s just different. Rearing children is going to do major things to your daily life structure, your bank account, your living room furniture, your social life, and so on. That’s real life. Whining because your life isn’t going the way you thought it was going to, or like some kind of posed ideal family scenario from a greeting card, is simply whining.

Meanwhile, learn how to have fun with your children. Figure out how they learn, as unique individuals. Experience how they share their thoughts and feelings, as unique individuals. Take photographs, collect stories about funny family moments, and build up that group identity of “this is the sort of stuff that makes our family because we’re all part of it”.

DON’T EVER wait until “things get back to normal” or “when this is all over” to do anything. There is no “normal”. This is it. This is life. Fun is something you make, not something that happens to you. Families is who you are, not something you wish would be. Love each other, live it, enjoy it.

(And bake cookies, because cold milk and warm cookies with your fingerprints pressed into the tops are great family-glue.)