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Overview & purpose
I have joined multiple autism-related online groups on several platforms. If you can think of “Autistic [something]”, you can be sure that an “Autistic[something] group” exists online. I haven’t figured them all out, yet: for example, I have no the faintest idea why there are MULTIPLE groups for the same purpose. Why there are several “autism parents” groups on Facebook, for example? Result of an autism politics schism? Exceeding the maximum number of members allowed by the platform? Who knows.
There is a number of themes/topics that seem ubiquitous, though, in “autism parents” groups, regardless of any other group characteristics. And one of these topics is violence – both verbal and physical — of their autistic child. Every so often, another exhausted, bruised parent shares their day; the day brimming with swearing, punches, kicks and bites. The post almost always concludes by the parent feeling sorry – no, not for themselves!!! They feel sorry for their autistic child, for the child’s suffering and struggle (emotional AND physical). The parent is absolutely terrified about the child’s future.
Group Response
The group invariably responds with messages of sympathy, empathy, emotional support and genuine warmth. (The post on emotional empathy in autistic people will be published soon!) Reading the responses is an emotional rollercoaster: I feel their pain, which drags me down (slowly, but surely), only to soar up revelling in the warmth of unconditional love for another human being.
But sometimes, instead of these hope-inspiring emotions, I feel the nagging teeth of irritation. Sometimes, I end up with a mouthful of anger bred by the irritation: anger at the system, at the non-existing support services for Autism families, who rightly feel hard done by when the NHS shoves them towards the exit at the moment when the parent is overwhelmed by the autism diagnosis — even if they already knew.
SOMEONE SOMEWHERE needs to help these families: to introduce them to Autism, to support them as they learn, to stay with them as they are working through their grief towards acceptance and finally embrace their child holistically – i.e., as a whole human being, Autism and all.
But there is no one. So I thought it might be helpful to jot down a few hints that should help you and them to distinguish between an autistic meltdown and a temper tantrum. It is an important skill for anyone who has to deal with autism at any level and any age.
I must include a caveat emptor: there are cases where differentiating between the two is impossible. This happens more frequently with non-verbal, non-communicative autistics. In these cases, a direct observation of the episode by an autism expert might help shed light on the issue (ideally, a video recording, with the linked note describing ABCs of the episode:
A–Antecedent: events around the episode. Whatever was happening around the person in the preceding 5–10 min: the environment, the people around, the person themselves.
B — ehaviour: what happened during the episode.
C — Consequences: the immediate aftermath plus events up to 10–15 min after the episode.
Autism & violent behaviour.
I have observed general public accept that Autism is invariably linked to some degree of violence. Therefore, when an autistic person does become violent, the group response suggests that violent behaviour is ANTICIPATED AND TOLERATED from the neurodiverse person, regardless of absence of diagnosis of Learning Disability (traditionally defined as IQ<70 )!
I wonder if this trope contributes towards the surprising persistence of Autism stigma and some Autism myths.
The myth of Invariably Violent Autism.
This particular myth must have come from the persistent portrayal of autistic meltdown in media, which usually goes like this:
An autistic person is exposed to a strong, unexpected, sudden stimulus that has come from nowhere, giving you an impression that someone somewhere flipped the switch.
Without fail, and with no buildup or warning signs, the autistic person is transformed from an adorable sweet quiet person with an amazing talent into a prehistorical monster who hits anyone approaching him for any reason, bangs his head against some hard surface, and swears at high volume.
Eventually, the magic switch is flipped back which is immediately followed by an autistic person discontinuing their performance: screams, swearing, banging, hitting, kicking, biting, etc.
Mysteriously, it always happens around the time when I am about to collapse into a full-scale meltdown myself. Every. Time.
“What’s wrong with this picture,” you may ask. Nearly everything.
Anatomy of meltdown.
The meltdown isn’t a Skinnerian or even Pavlovian response to the stimulus. You don’t blow up in a meltdown the very moment the stimulus comes on. It is a process, build-up over a period of time. Altering any parameter of this process will affect the timing and the intensity of the meltdown. For instance, a sound of high strength and high frequency (i.e., loud and shrill) will need a short period of time to provoke a meltdown. The low strength low-frequency sound (i.e., a quiet bariton) may not only fail to produce a meltdown – it may actually have a calming effect on the person.
The build-up period is the golden time. It may last seconds, minutes or hours. It is effectively the only window where a calm distraction may be welcomed AND may avert meltdown. We often have a “tell”. Close family members & carers usually know what it is; even if only subconsciously. One adult autistic I know has a muscle twitch of his cheek, just below the eye. His mother knows she has no more than 10-20 seconds to intervene before all hell breaks loose. One of my children -who is ordinarily HYPER-Hyper-hyperlexic – freezes in an “arms crossed, legs squeezed, stare ahead” posture, and maintains silence. (Even simply writing about it has nearly caused a mirror reaction in my own body just now). I know it’s best not to approach my treasure at that very moment (and for 30-60 min thereafter, giving her full freedom, punctuated only by safety concerns). If anyone makes any – ANY – demand on them at that point, OR if they are subjected to the slightest stimulus in the environment, we have IT.
IT is the autistic meltdown. IT is NOT PRETTY. IT is a primal rage that temporarily turns the prefrontal cortex (i.e., our self-control) off. Often, IT isn’t remembered by the person experiencing IT. IT may involve somewhat coordinated movements, or throwing things, or hitting you, or banging head, or rolling on the floor; we may be laughing hysterically – no, its not funny – it is unconsc ious! – or crying, and wailing, and cursing. We usually repeat the same word or the same simple sentence (like, “This hurts”). We may be simply stimming, but with little conscious control of our body, we can hurt you while doing that. No joke.
FOR YOUR OWN SAFETY SAKE, STAY AWAY. ENSURE THE AUTISTIC PERSON SAFETY AS MUCH AS YOU CAN AND STAY AWAY.
When IT happens, we are not ourselves. Our deep well of love for you and/or our gratitude to you are in our prefrontal cortex. Which is kind of cut off at that moment. So, please be careful.
This lasts for minutes, usually, but may last much longer. Sometimes, it may lead to catatonia (a post on catatonia is coming). Minimum stimulation, please, unless we request otherwise. That means:
- dont ask questions,
- don’t say anything,
- dont hug or cuddle me – unless you know I want it
- turn on lights or music or TV.
- Just leave me alone. Seriously. I am not being rude. I need this to survive.
My key message for parents is this: all kids have temper tantrums. Autistic kids are not exception.
And here are the tips!
So, this is the autistic meltdown for you, described above in VERY, VERY, EXTREMELY GENERAL terms.
If you have been around any kid over 14-16 months old, you know what temper tantrum is.
My key message for parents is this: all kids have temper tantrums. Autistic kids are not exception.
All kids must learn to deal with frustration; autistic kids most of all. No one gets all what they want in life: I am sure Sergey Brin, Bill Gates & Joe Bezos, they could tell you about their secret wishes. Something no money can buy.
And our autistic kids are no different. You might think, “What a heartless bitch!” right about now. You may believe that I say these things because I have not known bullying, cruelty, hardship or mental illness. I assure you, I am on first name terms with every factor stated here.
Simply put, I believe temper tantrums thrown by autistic kids should be treated the exact same way as all other kids around them, whatever is your preferred way.
I deal with them quickly and quietly: the moment the tantrum starts, I walk away. Tantrum NEEDS an audience. They get up and run ahead, arranging themselves for a good tantrum exactly in my way. I can’t miss them. Unless I turn. After about 3 repeats, they have naturally calmed down, because they have been more engaged with the idea of tantrum – not the tantrum itself – for a while. They disengaged with whatever frustration lead to the temper tantrum in the first place. On the 5th run, their eyes have their sparkle back – they might even be grinning! Rarely the game goes beyond the 7th reiteration.
And here I list the five top tips to differentiate between a temper tantrum and an autistic meltdown.
The Five Tips to tell tantrums from meltdown.
- What was the A-ntecedent of the violent behaviour?
The tantrum is nearly always ABOUT SOMETHING. The person/child’s request has been denied, and the child is expressing their frustration. (To a stranger, it looks like a child’s means of achieving their goals. The stranger might be even correct. It doesn’t mean that the child is manipulative and evil! Remember, autism means that emotional regulation may not be as robust as that of NTs. A child has lower frustration threshold, too. It is OUR role to help the child learn the skill of emotional regulation and self-control: and we will!)
A prolonged exposure to either high number of stimuli, or high power of stimulie, or both. Sometimes, a tell — Meltdown. It doesn’t have an identifiable reason, looking from outside.
2. B-ehaviour during the violent episode:
Well-coordinated movement with a specific purpose. Speech – more than 2 word sentences. May express anger that is aimed at a particular person(s) (this is usually whoever is “responsible” for the tantrum, from the tantruming person’s point of view). Low risk of accidental injury — tantrum.
Uncoordinated, aimless movement. No directed, purposeful violence. Limited speech. High risk of accidental injury — meltdown.
3. Is the child C — ognizant of the behaviour?
Yes. – tantrum.
No. – meltdown.
4. D — eath of the episode – if you are uncomfortable with the word “death” (my Mum is!), substitute “discontinuation” for “death”.
A temper tantrum can be discontinued fairly promptly, once the aim has been achieved. It may vary in intensity, mellowing out (e.g., when the audience disappears from the scene) and growing stronger again after that. If you “stood your ground” & stuck to your guns, the episode could go on for a while. Sometimes, they go on for such a long time, they require help to terminate the tantrum. Here, a SENSORY REWARD and/or the SPECIAL INTEREST (aka Fixation, aka Passionate Interest, aka Obsession, aka Focus Object or Focus Subject – these last two are my personal contribution to the field – [feigning bowing, then curtsying]) may be enormously helpful in switching the perseveration behaviour of the child.
The autistic meltdown episode cannot be discontinued at will, e.g., by talking to the child. As a rule, the recommendation is to ENSURE THE SAFETY of the child and MINIMISE ALL SENSORY INPUT/STIMULATION. The child is unable to communicate with the world at that particular moment, apart from the fact that his meltdown is a major attempt at communication – subconsciously, of course. NO HUGS/HOLDING THE CHILD. NO QUESTIONS. NO TELLING HIM YOU LOVE HIM. The best way to show and share your love is to stay at a safe distance. In limited cases, the upset is so great or the tantrum length so significant that the kid may literally go from the tantrum into meltdown.
5. What is the E-nvironment of the episode?
Tantrum — any environment.
Meltdown — sensory-rich environment or anything breaking rules & routines.
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