Parent Primer – Help, my kid has autism? Pt. 1

I’ve been asked a couple of times for a reading list of useful information for parents seeking or recently having received an autism diagnosis for their children. I’ll try to make this an easy read, because there’s a lot to cover here. I’m assuming you have a basic knowledge of what autism is, perhaps you’ve done a bit of reading about causes, diagnostic criteria, that kind of thing.

The scientific and medical community have done a great deal of research into autism, and they’re finding new proof of our differences and difficulties all the time. This is great, but as a community we can often feel like saying “well yeah, we told you so”. Take for example this study into intensity of sensation in autistic individuals. Ask almost any autistic person and they could likely tell you that they seem to feel things more intensely than non-autistic people, and that they often have trouble blocking out ongoing stimuli. These discoveries aren’t really discoveries for us. They also aren’t very helpful in improving our day to day lives. It’s all very well knowing we have a brain difference that makes some things harder, but that doesn’t help us to make them easier. What does help here is communicating as a community to share practical solutions, approaches and theories that help us to manage. So here goes my list of important stuff the Autistic and Neurodivergent communities have discovered about themselves that may be helpful to someone new to navigating the world of Autism.

1. Neurodiversity.
Neurodiversity is a movement of thought about differences in brains. It says that there are all different kinds of brains that work in a lot of different ways, and that’s just a natural product of human variation, much like eye colour, intelligence, height. We can group people with similar brains together. The important idea here is that whether you’re neurotypical (the “average” brain, no other labels), dyslexic, autistic, bipolar, the way your brain works is just as valid as everyone else’s. You can check out an excellent primer on Neurodiversity Theory at Neurodivergent NOS.

2. Models of Disability.
There are two leading theories on disability. The first and most well known is the Medical Model of Disability. This says that if you have a difference that means you can’t do things the way the majority of other people do them, then there’s something wrong with you and you need to be fixed.
An alternate theory on disability is that disability is a natural variation of the human experience, and people are disabled not by their differences, but by their different way of doing things not being accommodated by the majority. This second model of disability is called the Social Model. It states that disability is not a problem to be fixed, but a variation to be embraced and accepted.
Take for example a hypothetical world in which the majority of people are Deaf. Because the majority of people are Deaf, there’s very little concern for hearing people’s difficulties. Very few people are bothered by loud noise, but for a hearing person these noises are painful, distracting and poorly understood by the majority. The noise might impact how much sleep a hearing person gets, it might lead them to be distracted at work, leading them to have trouble keeping a job. The world isn’t set up to allow them a quiet space to rest or work. Of course, there’s nothing wrong with the person, they just work differently and need accommodation through devices such as earplugs, and through social change and understanding, for example to make quiet spaces available.

3. Autism is a Spectrum
There are a lot of misconceptions about autism, and one of them surrounds the use of the word ‘spectrum’. Most people imagine this as a straight line running from “Low Functioning” to “High Functioning” with “Normal” in the middle. For a start, dividing autism up into categories like “severe” and “mild”, “low functioning” and “high functioning” is counterproductive. A child that is labelled “severely autistic” may grow up to be labelled “high functioning”, similarly a person’s abilities can vary from day to day. If you saw me having a bad time, you might assume I was “low functioning”, if you saw me on a good day you might assume I was “high functioning”. In truth, neither really applies, and the use of the terms denies the difficulties those labelled “high functioning” face, and denies the abilities of those labelled “low functioning”.
Alanna Rose Whitney has done a brilliant job of explaining just how diverse autism is in her article. Take a look at the last diagram showing a wheel of different areas of function. Communication, processing, ability, all of these can be at different levels in different people and can vary over time.
If you need to talk about an ability or disability, it’s better that you be specific:

  • verbal/non-verbal/sometimes verbal
  • has/does not have an Intellectual Disability
  • has/does not have a physical disability.

Note: there’s a lot of debate about Person First vs Identity First language. The majority of the Autistic Community prefers that their identity be used first: “Autistic person” rather than “Person with autism”, because Autism is such a big and inseperable part of how our brains work and therefore a big part of who we are. People with other disabilities, and even some Autistic people might prefer person first “Person with ____” language, please try to be receptive to what people would like to be called. There’s no right or wrong answer, just a personal preference that should be respected.

4. Autism is variable
Autism can change a lot, over the course of a lifetime and even over the course of a day. What your child can do now is no indication of their capabilities in adulthood. Also, autism is a developmental delay, not a developmental halt. Even if your child seems to have gone backwards lately, or seems to have stopped making progress, there’s no need to worry. It’s also completely normal to have good days, bad days, even good and bad weeks and months where things seem to be going well or not at all.

5. Processing Unit Theory
You can get the video here, but it appears to be having some audio problems.
Imagine that everyone has a set amount of space in their brain, rather like a processor in a computer. Your average person has enough space for:

  • Executive functioning – thinking and understanding things, planning next actions etc.
  • Sensory processing – processing all the sensory input like sight, sound, smell, touch, proprioception, interoception and vestibular senses (more on sensory stuff later).
  • Memory of past events
  • Emotional processing – all the feelings related to the current sensory and cognitive input and that of the past events that are currently on a person’s mind.

In Autistic people, though, many of these items take up a lot more space. Sensory input takes a lot more effort to process because of the brain differences that cause increased perceived intensity and prevent desensitisation. Executive functioning can also take more effort, as can emotional regulation. If all of these things take up more space than is available, something has to give and the person stops being able to do some or all of these things. This may manifest as a “meltdown”, with emotional processing failing in a way that looks like a tantrum. It can also look more like a “shutdown”, where the person “checks out”, their executive functioning has been sacrificed to keep everything else running. Sensory meltdowns look a lot like emotional ones because they tend to project outwards more, but rather than being an emotional outburst, they’re a response to just too much sensory input.

6. The Empathy Question
It’s a popular myth that Autistic people don’t have empathy. It’s been defined, redefined, experimented on, and I’m not going to go into all the reasons why it’s wrong here. There are plenty of theories and counter-theories. Baron-Cohen’s Sally-Anne test against the Intense World theory. I’ll just go with what makes sense here.
From the first couple of topics on Neurodiversity, we know that Autistic brains don’t work the same way non-autistic brains do. Theory of mind, and empathy rely on you being able to make a simulation in your head of how another person will feel and react in a given situation. You look at the situation and extrapolate how you would feel in their shoes, perhaps adding a few body language cues. That works just fine most of the time, because the majority of people think in similar ways, or at least similar enough ways that the errors made in the predictive simulation are very small and infrequent. This predictive model stops working when you encounter someone who thinks and behaves very differently from you. Unless you have a detailed knowledge of how their brains do work, you’re likely to make false assumptions about what they’re thinking and feeling.

Which leads on to….

7. The Hidden Curriculum
We’re really complex social creatures, and we have a lot of unspoken complex social rules. Autism is, at its heart, a social learning difficulty. We just don’t automatically learn all of the rules that everyone else just seems to pick up. There are a whole lot of rules that are confusing or contradict each other. Take lying for example. We all know that lying is wrong, and we should tell the truth. We’re actually socialised by our parents and communities to encourage honesty in a very pro-active way. There’s almost no chance of an Autistic person missing that message. What’s harder to know is when lying is acceptable. Lying is wrong, except when the truth would be hurtful, for example when your friend asks what you think about their new haircut. You might not really like it, but it would be rude to say “I think it makes you look silly”. Lying here is acceptable, the spoken rule contradicts the unspoken one. Or what about keeping secrets. Saying you just went to the shop for some milk when you were buying a birthday card for someone is a lie, but it’s not the bad kind because you’re giving them a nice surprise. These are just simple examples. Check out Judy Endow’s experiences of learning some previously unknown rules.
So when we make some social faux-pas, it’s unlikely that it’s because we don’t care for the feelings of others (because we do), or that we just don’t care for the rules. It’s probably because we haven’t have the rules explained to us, and our disability has largely prevented us from passively learning them.

8. Communication
Almost every Autistic blogger out there says it: Everyone Communicates. Everyone.
There are a lot of different ways of communicating and all of them are equally valid. Whether you speak words with your mouth, type them on a keyboard, choose pictures from a book or electronic device, or indicate what you need by pointing, gesturing, making noises, leading someone’s hand to an object, facial expression, sign language. Behaviour is communication. What we mustn’t do is assume that behaviour is only communication when it’s communication that we want to hear. It’s obvious that a child pointing at a cookie means that they would like the cookie, but we’re less keen to take their behaviour as communication when they refuse to walk through the supermarket. The child is communicating that they don’t want to walk through the supermarket.
Communication needs to be honoured at all times. Now, I’ve cared for children, and I’m not for a moment suggesting that a child should get everything they want just because they’ve communicated that they want it, but there are a few big important communications that need to be respected.
Discomfort and distress – unless it’s a lifesaving medical procedure, or some other equally important part of your child’s care, communication indicating distress or discomfort shouldn’t be ignored. It’s likely that your autistic child will be sensitive to some sounds, textures, tastes and smells, and that these cause actual discomfort. Similarly, you should never force your child to do something they’re uncomfortable with unless it’s vital to their health and survival that they do so. Of course make them go for their shots, but if they communicate “No” when you suggest they hug someone, or play with something they might have an aversion to, or perform a social interaction, you need to listen to that No.
If the communication is that they want a cookie, or 5 more minutes on the swings, simply acknowledging their request, but firmly refusing is still a perfectly safe way to let them know that their communication has been understood. “You want a cookie? You can’t have one right now, perhaps after dinner.” lets them know that they’re not being ignored but that they can’t have what they want all the time.

9. Cures?
Goodness, there are so many terrifying “cures” out there. Please please, if you take anything away from this post, it should be that there is no cure for autism. There’s no conspiracy covering up the secret cure to make a child neurotypical. Autism’s there to stay, and I know that can be a pretty scary thing to hear. There are a lot of potentially dangerous biomedical interventions that people try in order to get rid of the autism in their child. I’m really sorry, it doesn’t work that way.
Imagine a person as a series of layers, with behaviour on the outside, then their perception, how they see the world around them, then thought. There’s a widespread idea out there that there’s just autistic behaviour on the outside, and that there’s a neurotypical person inside an autistic “shell”. This just isn’t the case. As someone who has lived with autism for 24 years I can categorically tell you it’s autism all the way down. Right down to the thought level. I behave autistic, I perceive the world in an autistic way, and internally I think autistic thoughts.
Over the years I’ve developed some strategies that let me pretend to be neurotypical for a little while, but they’re not very good for me. My brain still thinks autistic thoughts, but it’s also trying to think what a neurotypical person would do. It’s under much more load, and eventually I get tired and have to stop. I can hide the fact that I don’t know what the rules are by rehearsing scripts for interactions, I can force myself not to show through body language that certain sounds or textures hurt me, but that does not change who I am. Similarly for autistic children, any therapy promising to make them “indistinguishable from their peers” is likely to cause more trouble in the long run, and won’t cure the autism. It makes pretty upsetting reading, so I won’t link to the experiences of people who’ve been through various cures and therapies here.

Ok, so that’s the primer on some of the theories that are core to understanding autism from the perspective of the autism community. In part 2 I’ll write about some practical applications of this that can help reduce meltdowns, dangerous behaviours and family stress.

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