Division and Generalizing Amongst the Autism Community

It drives me crazy. You almost always do not find it amongst other communities involved with disability or illness, either. The autism community is so madly divided. I hate conflict as a whole, always have.

 

Here I Stand

• My husband and I both have autism. His official diagnosis is Asperger’s syndrome and mine is PDD-NOS. Our two youngest daughters are currently diagnosed with autism or PDD-NOS depending on whom you ask, and our eldest could qualify for an Asperger’s diagnosis though there is for the time being not a need for her to receive a diagnosis. In 2013, excessive labels will be obsolete and autism will simply be called autism. I am in favor of this, however

• I am not in favor of autism being divided up into clear-cut functioning levels. People are too complex to be so pigeonholed. You don’t know what goes on in a so-called “low-functioning” person’s head. You don’t know all the trials a so-called “high-functioning” person has, including trials identical to a “low-functioning” person’s trials or trials that said “low-functioning” person has in fact overcome. Furthermore, people fluctuate – daily. There is not a need for my eldest to have a diagnosis yet, but this could change at any given moment and she has yet to face the real world’s challenges. Furthermore, labeling people as low to high functioning makes way for inferiority and superiority complexes. I despise this.

• If people talk about their children smearing poop or having meltdowns, said parents deserves sympathy, not irrelevant nonsense.

• Autism has its bad points different for all, very bad points. These should not be ignored, especially not when spreading awareness.

• Autism has its good points different for all, regardless of whether these good points can be expressed by any given autistic individual.

• No one should be negatively generalized. Not autistic people, functioning labels regardless; not people of any opinions; not parents or any caregivers; not siblings; not teachers; not therapists; not anyone. Generalizing is wrong and negativity directed toward individuals is poison. Adding in the word “many” as an adjective is not going to kill anybody.

I Don’t Know How to Title This. Edit: Or, Neverending Adventurers

I never had the luxury – for it is a luxury – of assuming my children would be typical.  In fact, I was told things like, “You are an imbecile and any child of yours will be more of an imbecile!”  (I was not an imbecile.  The word was misused.  Minimal Brain Damage was the term I was labeled with, but by definition of the word “minimal”, I could not be an imbecile.  I do not doubt my distaste for functioning labels began with this mess.)

When you grow up believing you are retarded and horrible, told lies about how daring to have children will result in having constantly violent and words-I-will-not-mention-here children –   never do you have the privilege of assuming your children will be normal.

But I knew I, personally, would be incomplete without motherhood.  Marrying a man I knew at the time had Cerebral Palsy did not change my mind.  Granted, Cerebral Palsy is not genetic, but my point is that I was not scared of committing myself to anyone disabled.  After all, I had lived with myself all my life.

When we boarded the metaphorical airplane to parenthood, we had no destination planned.   So to speak, we said, “Surprise us.  We just want to travel.”

And lo and behold, we did not end up in a dangerous jungle with bloodthirsty beasts.  Far from it.

This is not written to downplay the feelings of anyone.  I know most people reading this are living lives they did not sign up for.  This was written to give people an idea where I am coming from.  I don’t know how to end this, just as I don’t know how to title this.

Adjustments

“Darcy can be the sweetest person in the world, but when Darcy doesn’t get her way… !”
~ Someone from the carpool I was kicked out of this past winter, insultingly speaking to me in second-person. She did not finish her sentence.

Good riddance to the gossipers of that carpool group, anyway. If you’re going to yell at me while we’re stuck in a snowstorm and I’m worried about family not answering their phones, good riddance to you.

I am a lax person. I sacrifice every day and have done so every day of my life, I let myself get cheated out of promised payments for the greater good (which is helping my students), I let most unpleasant changes bounce off my back, and I am spontaneous. My brain is autistically wired nonetheless. I don’t give a **** about not getting my way. I give up my human rights far too easily, as my husband says. I don’t so much as buy new shoes for myself unless my shoes are worn down and he insists. General “you” in use here, referring to judgmental people, don’t you dare take action against me because you see me as someone who has to have things her way. That’s discrimination, and then you try to argue with me and insist it isn’t. I process differently from you and you should be damn glad I usually only panic in situations that ought to worry anyone! You should also be damn glad – sick as it is – that I’m more likely to shutdown then panic. You most often ignore me then.

Such judgmental people don’t know what sacrifice is. I believe I was born a living sacrifice, born to help the generations after my own. I have my share of poor reactions to adjustments, but selfish I am not. Autism comes from the Greek word meaning self, something worthy of mixed feelings. Retreat into myself and self-stimulate I do, but selfish? Not as much as most humans.

Baby Girl hates (what is, to her, loud) noise.  She hates (what is, to her, glaring and direct) brightness.  Her protests are not selfishness.  They are expressions of pain.  Now grow empathy bones, judgers.  May my daughters grow to know a far kinder world.

Functioning Labels And Future

To be blunt, which I always am anyway, I don’t believe functioning labels hold water. I think they’re very good for creating elitist attitudes and drawing lines between people. Non-verbal autistics are thinking humans, many of whom are geniuses whose bodies are not working right to get the words out – while their minds are better than fine. It is a cruel irony, isn’t it? No person with autism truly articulates all the depth that goes in their brain. No, I don’t either. When communication is affected, how can we?

I’ve stated here before that we are all mixed functioning in life, regardless of whether or not we are disabled. I’ve also stated here before that autism is not a continuum of functioning abilities. No two people with autism have the exact same symptoms, the same amount of symptoms, or are impacted to the same extent. Therefore, no real continuum.

Often when I chat with people on the spectrum, so many readily identify themselves as “high-functioning” and it seems like something of an impossible-for-anyone-to-win contest to see who can be the most “high-functioning” or the “least affected”. People shouldn’t view things that way. (I admit, yes, it makes me feel bad when folks gloat about not having problems I have. I will rejoice ecstatically for anyone when things are overcome. But I don’t appreciate people sticking their noses in the air, so to speak, implying that I or anyone else is of lesser worth.) We are all simply people, all with struggles, and we should unite better than we do. I cannot stand the elitism among people who say Asperger’s is not autism because they do not want to be associated with their idea of autistic people. This is not to say that all people whose official label is Asperger’s do this. My husband certainly doesn’t do this. Plenty of people don’t, but those who do make a big stink about it which helps no one and hurts many.

My dear husband and I couldn’t be more different in so many ways, and yet, though we share almost none of the same symptoms, he will be the first to say we are alike. He is also the first to say that neither of us are better than the other. I need more protection (as I am more easily taken advantage of, for I am chronically naïve in ways my husband outgrew) and I need more medical care. He needs more social graces with the world outside our home who isn’t used to him, and his own naïvety is very different from mine. We both could use more advocacy. Who functions best depends entirely on individual viewpoints; that is to say, whoever has the strengths determined most useful to any given onlooker functions best in that onlooker’s opinion.

Our tiny daughters, not yet two years old – who knows what the future holds for them? We tell each other we’re ready for anything, which is a big lie because no parent is ready for the future or certain about the present. There is no way of knowing what our youngest girls will be like with time. We can’t predict how verbal either will be. Both have barely verbalized, the youngest almost never, and both have never imitated sounds or spoken consistently. There is a whole lot that both have never or almost never done, and delays are very striking next to their same-age triplet brother and next to others their age. (It feels bizarre to celebrate my son’s milestones, what with how the baby girls have so far to go to catch up!)

You just never know. You can’t predict outcomes. I was non-verbal and non-responsive at my babies’ age, and I began talking up storms at age three. The youngest does not self-feed, but neither did I until I was, as with speaking, three.

Envisioning these two as preteens in 2021 is impossible, so full of what-ifs. What if one far surpasses the other in the world’s view of functioning? What would that do for their bond as multiples? Neither are like their brother. That has already distanced his bond as their triplet.

I have a non-identical twin sister of my own. She is not on the autism spectrum. We are very different people, contrasting “like cartoons” in the words of many. I am tall and lanky; she is short and stout. I am a socially dysfunctional social butterfly; she keeps to herself and can easily “read” people but simply gives no damns about pleasing. I lean more left-wing; she leans more right-wing. I am Mahāyāna Buddhist; she is part of a Disciples of Christ church. I am sentimental and the first to shed tears at anything; she pretends not be sentimental. You get the idea. We are, in an odd way, each other’s best friends. I’ve asked her what she thought of me in our youth. She said, “I thought you were my dumb sister who didn’t know anything, but the closest thing I had to a best friend.” Yes, she was exaggerating with the “didn’t know anything” part. No, she wasn’t joking when she said she thought I was dumb. She says her opinion of me hasn’t really changed in that she still sees me as ditzy, but she adds that she does see I have talents and apparently am one of very few people she enjoys having conversations with.

Despite and because of everything, brutal honesty included, my sister and I love each other. So there’s hope right there.

I Am For Lack of Rigor: I am also for big families, snakes, and yin yang

In the world of professional childcare, especially in school settings, rigor is often encouraged. Go, go, go from Activity A to Activity B. No talking. Hands behind your back. Line up alphabetically. Sit down. Hands in your lap. Cross your legs. Go, go, go. We’ll be late. You, do this. You, do that. Go, go, go. We don’t have time for that. Go! What’s this word? You don’t know this word? Why are you so slow every day? You stay on the carpet while everyone else lines up. Go! You’ll miss the bus!

Most of my teaching career – or technically speaking, my career as a teaching assistant – has been in classes for typically developing children. This is the typical atmosphere of a classroom for young children.  Of course teachers shouldn’t call children slow, but plenty do it.  Middle school and high school after-school programs have less rigor as the kids grow, but a good amount of this rigor remains.  After-school programs for younger kids are on par with the schools’ strictness.

I would love to have a larger family. In another easier life, I don’t doubt I would have and I don’t doubt we’d all be on a family farm somewhere. I’m one of those women who always knew she was made to be a mother. Honestly, I wish it were financially practical to have about twice as many children as I have, and even thinking about all the rigor people use in organizing students doesn’t stop my heart from feeling what it wants to feel.

Working with young people is one of my greatest joys.

Mothering all creatures is a great joy for me, extending to the animal kingdom as well. When I was a toddler at a zoo, I ran to a zookeeper who was carrying a snake. I held the snake, kissed the snake, and rocked the snake like a baby. A crowd gathered to stare, apparently. I never noticed. The zookeeper said, “I have never seen anyone do that before – let alone a little girl!”

Snakes were an obsession for years. I forgot a lot that I knew about snakes, but I still love snakes. They reminded me of myself: long, skinny, feared, misunderstood, and sticking their tongues out on a frequent basis. My tongue would often fall out of my mouth oddly when I spoke and ate, as a young child. I outgrew this some time around age eight. I’m still long and skinny, and by more than I know still feared and misunderstood.

This post is starting to not focus very well.

Post, you were supposed to be about rigorous schedules for large groups of kids.

Well, anyway, much as I am indeed a matriarch figure, I’m a pushover. I would be a rich woman if I were paid for every time a head teacher told me to be firmer. With typical classes, at lunch, there would usually be one or two kids that had to sit by someone stricter than me.

With special needs classes, that really isn’t an issue. The kids goof around far less and when they do goof around, I somehow seem to have this magic calming influence. I think it’s a case of intuitively sensing their own and not wanting to disappoint me. In fact, I know they sense their own. Kids that give almost no one eye contact have looked at my eyes without effort. Kids with autism whom I’ve never seen before have bolted to me in supermarkets.

Good lords, this post has ADHD like its writer.

But I suppose my distractedness with the topics here has proven my point. I don’t outline and plan more than necessary. I’m for lack of rigor, and I’m a very laid-back person. My husband is the disciplinarian of our house, definitely not me. I think everyone could benefit from going with the flow instead of trying to organize the entire flow.

That’s actually one of the very few things I think my parents did right with me. (The other thing they did right was raise me on drinking water.) My life growing up was very unscheduled, and while my lazy yet overly-authoritarian parents actually forced lack of schedule upon me and that was plain abusive, I do think a lack of a monotonous schedule and an unpredictable home life did a lot to give me the lax spontaneous flexibility I have.

There is no typical day in my house. That is not to say I don’t allow scheduling, of course I allow it and of course it is needed to an extent. But there is no typical day. Mine is a free-spirited household without every hour divided into things we have to do. I think that even if I had around ten children, we would not be strictly organized. Life’s too short.

My husband and his background deserve more mentioning. He was raised by a very loving woman whom I adored, may she rest in peace and may cancer be vanquished. My dear mother-in-law spoiled her sweet quirky son. The first thing she said to me was, and I quote, “What do you eat on Thursdays? What do you eat on Thursday nights?”

How do you answer that?

“Uh… Food… “

She repeated her question. I said I didn’t care what I ate, excepting allergies I knew of, and we went back and forth before my at-the-time-boyfriend told his mother the exact same things I was telling her. That apparently sealed it for her: I did not care what I ate on any day of the week.

Needless to say, my husband puts more emphasis on scheduling than I do. I think it’s endearing, personally. I could stand to be more organized than I am, so we have a balancing act going on. Still, rigor is yucky.

Part of what my husband found attractive in me is my zest for unorganized living and loving. Part of why I fell for him was for his stability and comfort. I’m an extrovert and he’s an introvert, something that produced cosmic craziness from the get-go. I would volunteer him for leading projects while he preferred being the quiet background guy everyone around us forgot about. At an auction, I told him if he wasn’t going to be more social, I would bid on things for him. Much to his dismay, that was exactly what I did. But because I’m a nice person, all he ended up buying was bags of birdseed because I didn’t really want him to spend money on things he couldn’t afford.

We go together nicely.  (If you’re new to this blog, both he and I are on the autism spectrum.  We have our similarities and our large differences, and we understand each other deeply.)

Oh, darn. I forgot the name of a small island country between the Americas where, allegedly, everyone says No Worries. You backed up your car into mine? No Worries! A young lady I know who went there said I would fit right in. She was joking, or… so I think.

According to Hasbro’s personality test for the newest version of My Little Pony ponies, I’m like Pinkie Pie who “keeps her pony friends laughing and smiling all day” and “always looks on the bright side”.  Sure, I’m not always that way, but I come across that way most of the time, especially in person.    Lack of rigor!  It’s the best medicine for life’s chaos and a better invention than sliced bread!

Mama Day

Mother’s Day puts a big ol’ smile on my face and little tears in my eyes.

I am so, so, so indescribably happy to be a mommy. I am living my dream. My children are so precious, so amazing, so funny and deep and beautiful and …

Words can’t compare to the feelings in my heart.

My oldest daughter is gone this Mother’s Day, training to be a junior counselor at a summer camp. How bittersweet. I am very proud, but how I wish she were here instead. Whoever had the idea to start camp counselor training on the weekend of Mother’s Day must have forgotten that teenagers have parents.

If a documentary were to mention me…

My sister says that the reason why documentaries about autism do not show anyone “like” me is because no one cares about people “like” me who seemingly have everything handled. I see her point. People do not give a flip about many things when a flip should be given. For my children’s privacy, I do not wish for my life to be televised at this time. However, if a documentary were to mention me. . .

I would like the presentation to start by introducing an adult autistic who flaps her arms, hands, and fingers several times in the night and often more than once in the day. It should be said that I am urinary incontinent, meaning I must wear adult diapers. I own no panties. I don’t wear shoes with shoelaces, because I cannot tie shoelaces despite being able to untie all knots and tie knots made from other fabrics. I go out of my way to avoid looking at small images while I am eating, and I don’t allow plates or cups with pictures on them for this reason. When I am simply too stressed, usually because of bodily pains I fail to tell anyone about, I shut down. Sometimes I have seizures when I shut down. As for those bodily pains, they are many and almost all the result of a very faulty immune system. I have numerous allergies and my diet is very limited. Wheat products cloud my mind and clog my body, and dairy products are even worse. All these things and more should be stated as an introduction.

Then, it should be said that I am a mother of five. None are typical. Two have autism. One other, diagnosed with hyperlexia and ADHD, “borders” the autism spectrum. I am a wife. My husband is on the spectrum himself, and while he has none of my issues mentioned above, he struggles in areas where I do not. I am devoted to my family, to helping anyone who needs help to the best of my ability, and to living life to the fullest. I am a teaching assistant in a special needs classroom, a private tutor for children of all abilities, a mentor to young people in a rough neighborhood, a graduate student due to complete her master’s degree in social services this year, a curious soul who loves to learn about the world’s cultures, and – perhaps what would be the biggest shock to the audience – a very extroverted person by inborn nature. (Extroversion and social skills are not always mutually inborn!)

Oh, and I do relax. Stimming, flapping, is how I relax as much as it as an expression of pleasure.

I am sensory-seeking, hence my enjoyment of stimming, but even so I doubt I would stim as frequently as I do if I allowed myself to live a less hectic life.

Autism is not black and white. It is not a continuum of easily classified functioning levels. It goes much deeper than that. Had I been born when any of my children were born (1994 – 2009), I am sure I would have been diagnosed with “moderate” autism in childhood. Would that be accurate? I don’t think so. We are all “mixed functioning” in life, regardless of whether we are disabled or not.

And autism is not curable, no. There are many interventions that work for many people, and goodness knows there are children on the spectrum who exhibit less symptoms than I do because of such interventions, but they will always have autism regardless of whether or not it is clear. Bless the young generations into the best they can be – while not forgetting that it is possible to live a full wonderful life with autism, despite symptoms never “cured” and even if new problems develop over time.

Plenty of us are among the warmest most truly loving people you will meet, if you keep an open mind.

If a documentary were to mention me, it should mention that I do need medical services I am not getting. It should mention that I need a disability advocate in the workplace who can level the playing fields that confuse me entirely, going between me and my employers to help me reap the much-needed financial benefits which years of (mostly-volunteered) loyalty and enthusiasm and overtime have earned. It should also mention that I am resourceful in my own ways, and a symbol of hope more than a symbol of pain.

In my previous entry, I stated I believe most overlooked autistic women “like” me born to my generation are currently battered and/or homeless. Go find them. Take care of them and help to heal their wounds while respecting their spirits, as my husband does for me. The whole world needs more hope.

Increase of Autism Numbers, In Part

I was born in 1965. It was not until recently and by complete coincidence that I found out I have an autistic cousin who was sent away to an institution as a child. He spent his life hidden in various institutions and group homes. I was long ago told he was dead. He is very much alive. In his late forties, he still has not uttered a single word beyond “ewwwwwww” and most of his communication is pointing at people and holding his nose because telling everyone they stink is the best interaction on earth to him.

There were always geeks. There were always those who became shy over time. There were always those seen as primarily mentally challenged, and sent away.

There was also me. I was seen as bad, bad, bad and a crybaby. In childhood, I was incorrectly diagnosed as Minimally Brain Damaged. This shamed and infuriated my mother, who tried a number of times in my very youngest years to institutionalize me. She was told I was retarded, but not retarded enough.

MBD was a useless diagnosis. Nobody ever helped me. Schools didn’t know what to do with me at all. I was continually punished without being told what I was being punished for. People told me so often that I was bad, and I believed I deserved endless punishment because of this. Such beliefs stayed with me until high school.

I was very gullible. In elementary school, there was a fundraiser in which girls were to place their collected money in a pink bucket and boys place their money in a blue bucket. A group of boys walked up to me and said, “They changed the rules. Now the girls have the blue bucket and the boys have the pink bucket.”

I said, “OKAY!” and into the blue bucket poured my coins, and thus the boys’ team won. The other girls, of course, hated me and saw me as stupid.

Elementary school and middle school were times of endlessly getting in trouble. In high school, I tried very hard not to get in trouble because I saw one of the teachers (who happened to be in charge of the whole school’s discipline system) as a substitute mother figure. She had issues of her own, in and out of mental wards, and I thought I could just love her so much she would become healthy. I tried to give her no stress. This didn’t always work, of course, for which I would beat myself up.

Well, anyway, in elementary school and middle school, I believed I was terrible and it was a given that grownups hated me. In elementary school, a favorite punishment teachers had was to kick me into younger grades for the rest of the day. This was so I would not be their problem for the rest of the day. It was a bizarre punishment, something that probably happened to no other students.

Many a day would I have to stand in front of a crowd of younger children, hearing their teachers go on about what a bad person I was. I had no idea what they were saying such mean things for. I cried a lot.

“Don’t be a bad crybaby like this girl!” said the teachers, sternly, warning younger children.

My childhood was so ridden with negative experiences that it would take novels to fill them up. My confidence is very permanently damaged. I still think so lowly of myself that my husband has to talk to me like I’m three years old to get me to see doctors for my own self, because I think I’m not worthwhile.

Growing up, my parents didn’t care if I got sick. They couldn’t be bothered doing anything about my physical health, much less my emotional health. There was an incident at age eleven when I became “anorexic” in a sense, because I literally could not eat the only food in the house (McDonald’s hamburgers) and I was getting beat up for anorexia every day during lunch at school. Nobody cared. I was exhausted on the ground one Saturday, too weak from hunger to pull myself up, and my family ignored me completely. I fell asleep, unable to do anything else. When I awoke, I grabbed onto a couch and a lamp to force myself off the ground. I knew I had to save myself from anorexia, so I reluctantly ate the McDonald’s hamburgers that made me sick and the school lunches that everyone called roadkill. (I thought they actually were made of roadkill, being quite literal-minded at the time.)

Autistic people have always been around.

I don’t know many people specifically like me, and I have a feeling that most who were in my shoes are currently very abused by spouses and/or homeless. I came very close to marrying an abusive man, and I didn’t realize he was abusive when we were engaged and living together. He abandoned me because he said I wasn’t making enough money to prove to him I wasn’t “retarded”, and he refused to commit himself to a “retarded” person. When he left me, I hugged him and practically bowed to him. I told him he deserved better than me. He agreed. In retrospect, he was a terrible person who completely took advantage of me. It’s so sick that he made me think it was the other way around, but I am so glad he is long gone from my life.

Autistic people have always been around, and not only those who were hidden away or grew to be rich geniuses. Who knows how many battered women out there are autistic? Certainly more than we know of. Yes, I was the only “me” in every school I went to, but there were surely others in other schools.

I got very, very lucky because I found a kind spouse. I firmly believe the increase in autism numbers is mostly due to an increase of awareness. Whatever the other factors are, I do not know and don’t wish to debate because everyone has their own experiences. It wasn’t until 1994 that autism as we know it today was put in the DSM, and it wasn’t until the 2000s that autism gained more attention. By then, it was too late for so many of generations before.

What about girls?

I’ve worn blue for April 2nd (Autism Awareness Day) for years, but it wasn’t until April 3rd this year that I learned the reason behind the color choice.

Oh. Oh, I see.

Well, my two diagnosed on the spectrum are female. Another daughter who I suspect is on the spectrum is also female, my daughter who does not have autism but is a great deal like me nonetheless is female, and I am on the spectrum and female. My husband is diagnosed himself, but regardless, females outnumber males in our household. Our son is the “normal one” as far as neurodevelopment goes.

I’m all for supporting boys. My husband and two of my older brothers were misunderstood autistic boys when no one knew it, I have a nephew on the spectrum (but also a niece, and a cousin’s daughter!), and I help teach a classroom full of boys with autism. It is true that I see more males.

That does NOT mean we should IGNORE females. I feel like selecting blue as the theme color is blatantly ignoring females. A gender neutral color would be best. I thought blue was selected at random, but now that I know why it was selected, I’m sadly uncomfortable with using it for awareness.

Empathy

I’ve got too much of it, always have. I was a kid who cried about roadkill. Autism doesn’t make make me like Spock, I’m more like McCoy.

And I spread myself too thin, and when I can’t be everything to everyone, I become very sad and painfully worried that people will see me as selfish. There are lots of things I haven’t done in my life out of fear that people would see me as selfish. I will never be a professor. No one wants to hear me lecture, I learned that decades ago. But is my destiny to work myself into ever-returning depression trying to rescue the world? Yes…. because I couldn’t live with myself otherwise…… ?

Sometimes I love myself like a sane person. When I’m down, though, the very idea of liking myself is terrifying and feels like something so very morally wrong.