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.

One thought on “In reply to “caring for children with autism””

  1. Hello,
    My name is Pauline, and I am a music therapist. I work primarily with autistic children and children with developmental disabilities, and I would love to have a conversation with you. I’m trying to unlearn some of the things I’ve been taught (e.g. Person first language with regards to autism) and better work with my clients. In particular, I would love to talk with you about communication and meltdowns. If you would be willing, please email me! Thank you so much for educating us and sharing your experiences.

    Like

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