In reply to “caring for children with autism”

Oh my god, I saw this article and am screaming inside. Prepare yourselves, dear readers, this is not going to be pretty. Let’s work through this chronologically, shall we?

To care for a child with autism, parents must first look after themselves and prepare for a long-term commitment.

How is this any different from caring for a regular child? Caring for a neurotypical child is at the very minimum an 18 year commitment, more like 25. As a parent, when you chose to have a child/carry to term/keep a child/etc, you made a commitment to look after and care for that dependent, who had no choice but to live, to the best of your abilities. You made a long term commitment already, and if you weren’t prepared for that then you weren’t prepared to be a parent. “First look after themselves” self care is important. Self care as any parent is important; raising a child is daunting and tiring and at times hugely frustrating, and taking time for yourself is incredibly important. However, first? What sort of first are we talking about here? Are we talking, leaving your newly-diagnosed 3 year old on a porch for a month while you go on a spa retreat? I imagine not. So let’s rephrase shall we:

Caring for a child is a long-term commitment, and autistic children are no different. Parenthood has its challenges, so parents must make sure to set up times for themselves.” note my use of “autistic children” rather than children with autism. We do not carry our autism as an accessory, it is not an add on, we are not a child first and autistic second; our autism is a part of us.

“To single-handedly care for an autistic child is very draining, both psychologically and emotionally,” said psychologist Daniel Koh from private clinic Insight Minds Centre

Wow what scare-mongering, gosh. To single-handedly care for any child is very draining, both psychologically and emotionally. Stop trying to blame any and all struggles or difficulties parents of autistic children face on their kids’ autism. I’d like to know if Daniel Koh is autistic or not, and point out that if he is not then he doesn’t really have a place spreading fear about us. Not to mention asking if he’s ever single-handedly parented an autistic child, or a neurotypical child, or ideally both to be able to properly make this assertion that autistic children are scary and harder than allistic children.

One of the main challenges for parents is communicating with the child. “They may not know whether the child does not understand, or understands but does not know how to respond,” he said.

Yes, this is a challenge. Funnily enough, it’s also a challenge for all young children. I’m going to write a full post about alternative communication methods, but for now, I’d like to posit the explanation for this phenomenon observed by dear Daniel Koh that no one has tried communicating with the child in a way which is natural to them. No one would suggest that a blind child communicate with sign language, so why is everyone obsessed with making autistic children communicate like neurotypicals? Behaviour is communication, and comes much more naturally to a lot of autistic children than verbal speech does. You can tell if your child is uncomfortable because they’ll act uncomfortable. You can tell if your child enjoys something because they’ll act happy. This might include stimming like hand flapping, vocal noises like squealing, and might not include things like smiling and laughter. As your child grows and you grow as a parent (provided you’re paying close attention to the behaviour of your child and looking to see what correlates with what situations – eg noticing that hand flapping correlates with soft textures, that screaming correlates with touching) you’ll find new ways of understanding the way your child understands you. This is getting long, the rest will be reserved for a post on communication.

Parents having difficulties should seek assistance such as by enrolling the child in a special needs school or getting help from relatives.

This isn’t too bad but the way it’s phrased has the implication that autistic children are burdens, instead, I would suggest something like :“Resources such as schools designed around autistic children may be useful, and the help of others may allow parents more time to themselves.”

Also, I would add that “special needs school” here probably means ABA or therapy designed to normalise and mainstream, and there are posts here and here about the horrors of ABA.

Autism is a lifelong condition that affects an individual’s social interaction and perception of his surroundings.

Autism is not a condition, autism is a disability. We are not sick, we are not ill, we are not broken, we are not wrong. We are disabled. Further, yes, being autistic does affect social interaction, but not because autism is wrong or bad, because the world refuses to accommodate us and views anything slightly different from that cultural norm as worse. For example, many autistic people struggle to process things as fast as allistics, so may get behind in group conversation and be unable to follow, saying things which seem to be at random but are actually in reply to conversation 5 minutes ago. If, instead of mocking them, we understood that our peers may process things at different speeds and took this into account, those individuals would be able to interact fine. Also, autistic people perceive things accurately; autism is not a psychotic disorder (not that psychosis is a bad thing necessarily of course). What it is is that the world affects us differently, just like bright flashing lights might cause epileptic fits, overstimulation might cause meltdowns. The epileptic person isn’t perceiving the world wrongly, it just has a different effect than it would if they weren’t epileptic. Finally, stop using “his” when what you’re looking for is “their.” Autism affects people of all genders.

In the case of the boy who fell to his death, a medical report stated that he was unable to produce meaningful speech and would scream when excited.

I don’t know this case but really why is this sentence here? What are you trying to show, that because of his autism he died? “Meaningful speech” to who, a neurotypical? I’m sure the noises he made carried meaning to him, I’m sure what he was trying to get across was important to him, and I’m certain it was ignored and dismissed as the meaningless noises of an autistic child. Also, the fact that he displayed excitement differently to how you expect it means nothing, really. People of different cultures do different things when experiencing emotions, and we don’t make a mockery of them and dismiss their feelings because of it. Autistic people express emotions differently, that doesn’t mean they aren’t valid. This isn’t even a case study and it shows nothing and adds nothing.

The causes of autism are unclear, but it is thought to be caused by chemical imbalances or genetic factors that affect brain development.

It’s not thought to be caused by chemical imbalances, no one knows what causes autism, and frankly, autistic people don’t care. We exist and we have every right to. Our lives are no less valid because we’re different.

According to Singapore’s Autism Resource Centre (ARC), there are varying degrees of autism that depend on two factors: intellectual ability and severity of the autism.

There are no “degrees” of autism; there are autistic traits, and all autistic people have a different bunch of them, but no one’s bunch is any less autistic. I wrote a long post about why functioning labels are completely inaccurate here. Not to mention that using “severity” once again implies that autism is a disease, is wrong, and so on. Stop marginalising us with your language; you might think it’s unimportant, but it is not.

Although there is no known cure, an understanding of the specific condition of an individual will enable help to be given early and minimise adverse effects later in life.

No, there’s no cure, and almost all autistic people want it to stay that way. I support the words here but not what they mean; an understanding of how autism affects any individual means that accommodations can be put in place early and adaptations can be made to their surroundings in order to minimise the adverse effects that a neurotypical world can have on an autistic person. Understanding the needs of an autistic person means they can be met. However, that’s not what this author means. What they mean is, understanding what is wrong with an individual will enable enforced normalisation to start before they have a chance to say no and make them learn to act neurotypical at any personal cost to make them fit better into my boxes in later life because we don’t want anyone to be neurodivergent.

ARC organises training to help caregivers understand and manage autistic individuals of all ages.

Once again, if this was “we teach parents and caregivers, with the help of autistic people, what the world is like for their autistic child and how best to not hurt them and communicate with them, etc” then I would be wholeheartedly behind this. But that’s clearly not what it means. It means we teach parents how best to train and punish their kids like dogs into compliance. It means we teach parents how best to strip their children of privacy, individuality, the right to consent to what happens to them, the right to say no, and all autonomy. It means we teach parents how to be the most effective abusers.

Autistic people do not need to be managed, we need to be listened to and understood.

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Your autistic child does have a sense of humour

Okay, this is just a little rant, because I love my brother a lot and he cracks me up, even though he doesn’t speak a word.

Picture this; family dinner, 3 brothers, one sister, mother, step father. Me and Al can communicate with sign language, our middle brother (J) knows a few words, our parents and sister know nothing and haven’t bothered trying to learn.

Al wears over-head style headphones in most settings, especially when the whole family is together, because our mother is really rather loud and it gets over stimulating for him, but regardless; he copes with the headphones. So we’re all sitting eating, and Mum asks me to ask Al to pass the salt.

(Note: mother dearest is not a nice person.)

Me, signing, towards Al: “please pass mum the salt, it’s on your right”

Al, signing, towards me: “she’s salty enough why does she want more” and passes it to me, while I desperately try not to crack up and translate that he said of course.

Just a recent example of how, even though he may not say so verbally, Al is hilarious.

What an ABA session looks like

As I’ve already posted, I had Applied Behavioural Analysis when I was 17, and this is a continuation of a post in which I talked about it generally – this is a write up I did on the day of the first session.

They spoke solely to my mother. They handed her a questionnaire with my health details and things on it, not me, they asked her questions such as “and has the patient eaten today?” and “how is the child with physical contact?” “how is he with eye contact?” “what is his language like?”

This is despite the fact that when we walked in, I started aimlessly chatting with an autistic 12 or 13 year old sitting beside us, and the person interviewing mother could clearly hear that my language was good. They agreed the behaviour plan thing with her, not with me, behaviour to be eradicated and such.

After these preliminary questions, we were taken through into one of the therapy rooms. They sat us down and asked in depth questions about my interests and habits. They mostly directed these at mum, things like “how many times a day does he do [thing]?” when mum said I’m at boarding school so they’d be better off asking me, they started talking to me a little more. They asked what my favourite TV shows were, what I liked to do with my free time, what my fave foods, candies, drinks, etc were.

They asked me about school, what I was studying, and whether I was applying to uni, etc. They quickly ascertained that I love to read, and found out that my biggest special interest is 20th century poetry. Mum had told them this before. I explained that I have to read a lot for my uni application, and that I needed to know a lot about an area of literature and that 20th C poetry is the area I love the most so am researching.

They then set up the reinforcers they would use. They took from me my phone. They instructed mum to bring to the next session every single one of my poetry books and not buy me any more. They told mum I wasn’t allowed magic stars (i’m addicted..) outside sessions, took my harry potter books, told mum I wasn’t allowed to watch Hannibal outside of a context as a reinforcer, they tried to take my music but I said that was impossible because it’s all in the cloud so I’d be able to access it no matter what.

When they said that I wouldn’t be allowed to read poetry, I freaked the fuck out. I said I have to for uni applications, and they said “well you better behave then” and sent my mum out of the room so they could work with me. At this point, two other therapists came in, so there were 4 of them and 1 of me. They took from me the books mum had made me bring, the ones I had at my dads house for the holidays. This included my collection of Auden’s poetry, which is my heart and soul, my Larkin, and my Ginsberg. My favourite poets.

At this point I panicked. I started stimming like mad, rubbing my hands on the sides of my head to try to calm down and stop the buzzing in my mind that was coming from the panic of being separated from my sense of self. Mistake number 1. They told me to stop, and I didn’t acknowledge them. Mistake no 2. They then took my hands, physically.

This hurt, because I do not like physical contact with people I’m not comfortable with at the best of times so when I was having a meltdown, it felt like electric shocks. I screamed and started crying and shouting to not touch me, desperately trying to get my hands out of their grip. Mistake no 3. At this point, two of them had hold of me, one on each arm. When I tried to get away, the other two essentially wrestled me to the ground, forcing me to kneel then lie on my back. They restrained me like this, while I was crying and screaming and trying to get away.

Three men and one woman, who was holding my head down so I couldn’t throw it from side to side or bang in on the (slightly padded, children’s play area style) floor. I don’t know how long they held my like that, but it was until I had cried and struggled so much I flopped, exhausted, and just sort of…withdrew, still crying, still in pain, but unable to do anything about it because my muscles just weren’t responding anymore. It was at least twenty minutes.

At this point, they got off me, and one of the men pulled me up. I felt like a zombie. They walked me over to a table with a chair on either side, and I sat down in one of them. They gave me a cup of water (children’s sippy cup) and honestly i was so frazzled i didn’t even care and drank from the goddamn sippy cup. The woman who was leading the session sat down opposite me and started talking, really patronisingly, about how they don’t tolerate temper tantrums. I couldn’t really hear, it was like I was at the bottom of a swimming pool. I think i nodded along.

They then brought out some index cards with images on them and made me say what they were, which was fine, my language is fine. I could barely hear myself speak, swimming pool syndrome and all, but i know i was responding. Once they realised i’d got that down, they brought over storyboards of images and made me narrate them. Also fine. They gave me 15 minutes with my phone after that.

Then they started training me to hold eye contact on the command “eyes”. They tried to do this with food as a reward, which didnt work, because i’d rather not have some chocolate than hold eye contact for more than an instant. So the woman took hold of my chin and forced me to look her in the eye.

I started uncontrollably drumming my hands on my knees at this, so they said “quiet hands!” and held my hands, palms flat, against the desk for a long count of three. I left them there as long as i could. They tried various reward systems to get me to meet their eyes, none worked. I kept stimming with my hands, and after the third “quiet hands!” and hold ritual, they strapped them to the arms of the chair i was sitting in. It had straps for this purpose attached.

They achieved the eye contact by saying that if i could hold it for 3 minutes they’d give me 9 minutes with the auden they’d taken from me, 4 minutes of eyes = 12 minutes of poetry, and so on. I held eye contact until i cried, hanging my head, squeezing my eyes shut, hands strapped to the chair. They left me like this until I stopped crying, gave me the book (i’d managed to wheedle myself 15 minutes). Then we did it again. And again. And again.

After that, they did physical contact training. Handshakes first, i could handle 3 before i started stimming with the other hand at the time. They said “quiet hands!” and held my hands to my sides for a count of three each time. Once I’d managed three hand shake and eye contact in a row, they moved onto hugs. Which were horrific. Cue meltdown. Cue restraining.

They kept pushing the hugs until the end of the 4 hour session (inc interest assessment), and then i left.

The Realities Of ABA

Content Warning: medical abuse, infantilising of an autistic adult

When I was 17 my mother forced me into Applied Behavioural Analysis, the very same therapy being recommended to parents of autistic children.

Equipment

This was frankly barbaric. The chairs I had to sit in all had straps on them; one for each wrist, one for each ankle, and one like a seatbelt to keep you in place.

Wrist straps were used when I couldn’t stop flapping my hands or using them in any way deemed wrong, ankle straps when I wouldn’t sit with my knees in perfect right angles and my feet flat on the floor, when I couldn’t stop tapping my feet or bouncing my leg. The seatbelt-esque one was used whenever I bounced or wriggled in my seat too much.

Restraining

This remained a constant. Every time I started to go into meltdown, I was restrained. Every time I stimmed with my hands, they were restrained. I am not a child. I’m 5’6” and like….68kg. It takes a fair bit of force to restrain me when I’m trying to get away.

As in session 1, it was the practice to have 4 therapists in the room with me at once; a woman who led the session and 3 men who basically seemed to be there to move shit for her, including me. Restraint varied from holding my hands to my sides for a count of 3 when I stimmed, to holding me down, on the floor, when I had meltdowns.

Tasks

There were various tasks designed to do different things. A lot of them werecompletely arbitrary. A common one was to sit completely still in perfect Position (capitalised because it was a specific thing and a proper noun that they used, “sit in Position, or we’ll have to restrain you!”) and repeat an entirely pointless task: putting the tennis ball in the box, then out, then in, then out, then in, then out….. This was on command. So, it looked like:

“In.”

*puts ball in box, using only dominant hand and not moving the rest of my body*

3 seconds

“Out.”

*puts ball on table*

3 seconds

“In.”

The only movement allowed would be moving my left hand to the ball, moving the ball, putting it down, moving my left hand back into Position.

Another example would be where there was a number of coloured bits of card on the table, and I would have to touch the one I was told to. Another would be the simplestand up, sit down, stand up, sit down, stand up, sit down. 

Always a 3 second gap in between them, always only a singular and very specific movement allowed. Any deviation elicited punishment.

Other tasks were for behaviors I was meant to be learning, such as to hold eye contact, shake hands, hug. Eye contact was simple: on the command word “eyes” I had to look up and hold eye contact until they said I could stop. Sometimes this was done in bouts of 10 second intervals, sometimes for several minutes at a time. If I managed it, without stimming or moving at all, I was rewarded.

Hand shakes and hugs were simple too, on the command word, I had to give a handshake or a hug. Both were 3 seconds of contact, then a 3 second break, then 3 seconds of contact, then break, contact, break.

Over the course of the sessions, the number of repetitions of each task/the amount of time I had to do each one to get a reward increased. At first, 3 hand shakes in a row earned me 5 minutes of reading time. By the last session, 30 hand shakes earned 5 minutes.

Any deviation, any stimming, any slight movement away from the task, any hesitation, any refusal, meant a punishment and the task started over.

Reinforcers

They took from me all my poetry books and all my Harry Potter books, and used them as reinforcers. This was awful for me to deal with, because my books are my sense of self.

when X, Jesse is allowed Y minutes with book Z”

X would include: 4 hand shakes in a row, performing a task with no deviation for 15 minutes, 10 perfect hugs, etc.Y varied depending on how much I’d earnt.Z depended on how good I’d been. 

They had a lot of my books. Auden was only given to me if I’d completed an hour without any punishment. This happened only three times over the entire 6 weeks. Plath, Larkin, Ginsberg, were given to me if I’d completed half an hour without any punishment. Of course, that’s only if I’d earned a reward anyway. There was no reward simply for not earning punishment.

I love my books. They are everything to me. As a result, every time they took them from me after giving me a small amount of time with one, I stimmed. Cue “quiet hands” etc. They also tried using food as a reinforcer, but that never really worked well, because I would always rather not do the behaviour than have whatever they were offering. Food and I have a weird relationship.

They also had some really specific ones to me. Sometimes I’d be allowed to curl up in a ball in the corner as a “reward” after a task that was mentally trying.

It was really weird. If I asked for a specific reward it was often given to me, provided I’d earnt it. Sometimes I’d ask to be allowed to sit under the desk, or to take my shoes off, or to wear a coat, or them to turn the air con up, or to put my watch on. Etc. Conversely, every time I asked for one of these, they then used it as a punishment if they could.

Punishments

This is the Biggy. Apart from restraint, various punishments of varying degrees of cruelty were used. These included screaming “NO!” at me (which is terrifying, not only from a sensory perspective but also from an abuse survivor’s perspective),spraying water in my face, putting me in “time out” which involved standing essentially nose to a wall for a length of time unknown to me or put in a small side room which was entirely bare and essentially a closet with no window on the door which would be locked behind me, using sensory aversives like forcing me to put wool gloves on, put shoes on, touching me with velcro, and the dreaded taste aversions.

Taste aversions are funny ones, because the immediate thought is “well why let them put it in your damn mouth” and the answer is “well do you seriously think i had a choice?” They used wasabi for me cos I am SO sensitive to spice it is actually unreal. They’d make me eat a wasabi pea. It was awful.

Targeted Behaviors

My targeted behaviors, as in, the ones to be eradicated, were mostly stims and things like not responding to adults, but those aren’t targeted behaviors so much as “outcome behaviors.” They picked up on and actively worked against: hand flapping, hand tapping, finger wiggling, waving hands in front of eyes, hand rubbing, leg bouncing, foot tapping, irregular/rapid blinking, and jaw “chunking”. These are the most constant brackets of stim for me, and the ones mum had asked them to get rid of.

They largely did this by punishing me every time I did any of these behaviors.Their technique was to get me to do tasks that “taught” me the behaviors they wanted (for example, hugging, eye contact, responding to commands) and then forcing me to stop whenever i stimmed. Which was a lot. When not forced not to, I literally stim constantly. I never stop stimming. It’s painful for me to stop.

For example, when asked to do hand shakes, I often would wiggle the fingers of my other hand. This was Not Allowed. This elicited a punishment.

Why your child is not “high/low functioning”

You’ve probably been told your child is either “high” or “low functioning.” This was probably included in part of their diagnosis, and it probably defines what sort of accommodations people will think your child is deserving of.

I’m here to tell you that your child is not high or low functioning. Your child doesn’t have “mild” or “severe” autism. Your child is not on “one end of the spectrum.” Your child is simply autistic.

But Arion! My child can or can’t do X Y and Z that high/low functioning people can/can’t do! That makes my child different from them.’

The fact that one autistic child is different from another doesn’t mean that one is more or less autistic than another, nor does the fact that your child can’t pretend to be allistic as well as another. Autism isn’t a spectrum because there are better or worse ways to be autistic, it’s a spectrum because there are many different autistic traits, and each person has a different combination of them. Think of it like a pick-n-mix: each sweet is an autistic trait, and we all have different bags of sweets. They aren’t the same, but none of them is more or less a bag of sweets than anyone else’s.

The labels simply don’t work. I’ll explain why by example. Say we have two autistic children, let’s call them Alice and David, and let’s say they’re about 10 years old, the sort of age at which neurotypical children begin to gain a new level of independence from us as primary care givers.

  • David cannot brush his own teeth
  • David needs help feeding himself
  • David needs reminding that he needs to go to the bathroom, as he cannot self-monitor his biological needs
  • David doesn’t speak
  • David needs to keep earphones in or ear defenders on whenever he is out of the house, otherwise he’ll melt down from the noise
  • David cannot hold eye contact
  • David does not do hugs or hold hands
  • David won’t follow most orders, such as “pick up your litter”
  • David stims every day and will not hold his hands still

You’d call David low-functioning, correct?

  • Alice has many friends who she contacts most days
  • Alice can communicate using thousands of different words in sign language
  • Alice can cook herself 5 different meals
  • Alice completes a few chores each day, including tidying her room, the washing up, and feeding her dog
  • Alice always does her homework
  • Alice can get a bus on her own
  • Alice is in mainstream school in a normal classroom with normal teachers

Alice is high functioning, yes?

What if I told you that both Alice and David are my brother, who I take care of, Al? Al could be defined as either high or low functioning, depending on what is on your checklist. He can’t tidy up an unexpected mess, but he can feed the dogs every day at 6:30 pm, make his bed every day, and do the washing every Monday night. He can’t use vocal words, but he does know thousands of words, and he can use them, he just talks with his hands instead. He can’t handle how overstimulating the world is, but he’s perfectly capable of navigating it if I give him the tools he needs.

‘But my child can’t do any of those things! They’re just low functioning!’

Have you taught them how? Your child is disabled, I am disabled, Al is disabled. None of us can do things in the same way you, an allistic person, can. Are you expecting your child to do the same things as an allistic child?

Say your child has issues knowing when they need to use the bathroom, you’d say this is a significant thing that means they don’t “function”. Al struggles with this, because he doesn’t recognise the feeling of needing to go, and this can lead to accidents that are unpleasant for me to deal with and embarrassing for him. Al has an app on his phone which buzzes every hour and tells him to go to the bathroom, for when he’s at home, because he always keeps his phone on him. Obviously, not all children are old enough for that, so you can perform this function for them, until they’re old enough to take over. Solution found. It’s not the normal way of doing things, but is it not functioning nonetheless?

Whatever the behaviour, there is a work-around.

Work-arounds are no less functioning than neurotypical ways of doing things.

Dear “Autism Parents”,

Just Stimming...

I want to clear a couple of things up.

1.

I don’t have autism. I am autistic. This is important to me. It also doesn’t mean that I “see myself as a disability first and a person second,” whatever that is supposed to mean. In my eyes, I’m Julia. Just Julia.

I cannot separate out which parts of me brain are wired because baby I was born this way and which parts of my brain should be marked off as AUTISM. Nor do I particularly care, to be honest. I am Julia, and a significant fraction of Julia is autism (and thus, via the transitive property, I am autism but that’s not the point). Am I a writer because I’m Julia, or because I’m autistic? My writing is good in its own right, I am told, and it’s also fundamentally shaped by my neurology–just like yours. I like

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