Sensory overwhelm is a marquee feature of my life. Autistic perception can be a high fidelity flood in an intense world. “Autistic perception is the direct perception of the forming of experience. This has effects: activities which require parsing (crossing the street, finding the path in the forest) can be much more difficult. But there is no question that autistic perception experiences richness in a way the more neurotypically inclined perception rarely does.“

We’re Autistic. Here’s what we’d like you to know.

Prolonged sensory overwhelm can lead to meltdown. A meltdown is not a tantrum. It is not attention-seeking. It is a response to overwhelm, anxiety, and stress. If I meltdown, the best thing you can do is be present, patient, calm, quiet, and compassionate. Meltdowns are tidal waves of sensory overwhelm. Try not to add to the overwhelm.

We’re Autistic. Here’s what we’d like you to know.

A meltdown is not a word you use to describe a bad day. It’s not a panic attack. It’s not a mental health episode. It’s not a tantrum and it’s not something a small child does several times a day- unless of course that child is autistic.

It is the complete loss of emotional control experienced by an autistic person. It doesn’t last long but once triggered, there’s no stopping it. Meltdowns are emotional avalanches that run their course whether you or the autistic person having it likes it or not. They can happen at anytime and can be caused by a number of factors including: environmental stimuli, stress, uncertainty, rapid and impactful change and much more. It really depends on the individual.

Meltdowns are a fact of autistic life. Telling an autistic person to up their resilience isn’t helpful. That can actually make it worse. I can only speak for myself, but when I have a meltdown or when I can feel myself heading for one, I get very worried about the impact on other people. Am I disturbing them? Am I making them feel uncomfortable? Are the going to view me as immature or irrational? Will this hurt my career prospects? These are the thoughts that are spiralling through my mind. They fuel my anxiety and speed up that loss of control.

You might think that the consequences of these thoughts should be enough of a deterrent to head off the meltdown but that’s just not how they work.

Meltdowns are a horrible thing to experience. No matter how uncomfortable, distressed or inconvenienced you may feel, the autistic person having the meltdown is suffering on a whole other level. I work damn hard to keep them at bay and there are some things you can do to help too.

The M Word: We need to talk about adult autistic meltdowns | by Ashlea McKay | Medium

Sensory Hell

Meltdowns are not a “symptom of autism.”

Meltdowns aren’t an inevitable part of being autistic.

Meltdowns are what happen when autistic people are forced to endure extremely stressful situations.

@brookewinters33

Thank you, @brookewinters33 for explaining this so well. I go into schools and events where the #autistic children are in crisis through awful environment/actions by others, to be told, “It’s their autism”. It’s not. A meltdown or shutdown is a distress/crisis behaviour.

@AnnMemmott

Imagine if for decades, people were ‘treating’ diabetes low blood sugar incidents (and angry/distressed behaviour through them) with ‘challenging behaviour’ courses.. instead of preventing them happening in the first place? That. Meltdowns = distress. Sort the distress. Not hard

@AnnMemmott

People should know meltdowns only happens when we literally have had more than we can take. We can’t always control them.

@NeuroRebel

I don’t melt down because I’m Autistic. I melt down because something in my environment is intolerable, and I am having a normal reaction of pain and/or anxiety.

The Protective Gift of Meltdowns

“Let me stick a hot poker in your hand, ok? Now I want you to remain calm.”

That is the real rub of the experience of sensory meltdowns. The misunderstanding that someone with Autism is just behaving badly, spoiled or crazy. When the sensory overwhelm is an actual and very real painful experience. It seems absurd to most people that the noise of going to a grocery store could possibly be “painful” to anyone. So most people assume the adults or children just want attention, or they can’t control their behavior. In work situations I get accused of all kinds of things. And when I leave a noisy situation like a party to step out to take a break, people will notice that I’m “upset”. They will assume or worry that I must be upset at something or someone. And that’s just if I do take a break. If I can’t take a break or get my life out of proper oscillations and can’t avoid noise or sensory/emotional overload, then I can get snappy, defensive, irritated and under very unfortunate circumstances even hostile.

What the stress of noise means, in the autism’s world of an over-sensitive physiology and ramped up stress experiences, is that that pain is warning of us of real damage being created in our bodies. So this anxiety and reactivity isn’t necessarily just perceived but is actually happening. We are not being overly dramatic or a brat (what those with Autism are often accused of). Damage to our physiology is what noise can actually do.

Autistic Traits and Experiences in “Love and Mercy” The Brian Wilson Story – The Peripheral Minds of Autism

I hate meltdowns. I hate the way they take over my entire body. I hate the sick way I feel during a meltdown and I hate the long recovery time—sometimes minutes, but just as often entire days—afterward, when everything is too intense, and I am overwhelmed and exhausted and have to put my life on hold while I recover.

I hate the embarrassment that comes from a meltdown in front of others. I hate the fear that bubbles up with every meltdown. Will this be the one that gets me arrested? Committed? Killed?

Meltdowns, Like Shutdowns, Are Harmful But Necessary

The Protective Gift of Meltdowns — THINKING PERSON’S GUIDE TO AUTISM

One of the more encouraging developments in the autism field over the last decade or so has been a growing awareness of the significance of sensory issues. Sensory sensitivities are included in the DSM-5 as part part of the diagnostic criteria for autism, and in teacher training materials, such as those provided by the AET. They are also highlighted in campaigns by the National Autistic Society (NAS), for example. But despite these signs of increased understanding, I’m not convinced that in our schools there is a sufficiently nuanced appreciation of this multi-faceted phenomenon, which potentially influences a whole range of physical and perceptual processes (Bogdashina 2016). Indeed, the school environment can present autistic children with a multi-sensory onslaught in terms of sounds, smells, textures and visual impacts that constitutes both a distraction and a source of discomfort (Ashburner, Ziviani and Rodger 2008; Caldwell 2008). There was also clear evidence from my own study that sensory issues, and noise in particular, can be highly exclusionary factors for autistic children in schools.

Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom

Needless to say, the dining hall, as well as being busy, crowded and a source of multiple odours, was also very noisy, as trays were picked up and clattered back down, cutlery jangled, and metal serving dishes clanged against metal hot plates. Meanwhile, the children, squeezed into rows of tiny seats bolted on to collapsible dining tables, grew louder and louder to make themselves heard over the racket. Indeed, the lunch queue alone can be the place where sensory problems ‘can turn into a nightmare’ (Sainsbury 2009, p.99). Perhaps unsurprisingly, therefore, all of the child contributors to this book – Grace, James, Rose and Zack – identified noise and crowds as being the most difficult aspects of school from a sensory point of view.

Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom

We’ve turned classrooms into a hell for autism. Fluorescent lighting. Endless noise. Everywhere, bright patterns and overloading information. Groupwork and social time. Crowded hallways and relentless academic pressure. Autistic children mostly could cope in the quieter schools of decades ago. Not a hope now.

We cannot simply exclude autistic pupils for entering meltdowns. Meltdowns are part of autism for a good number of autistic young people.

Whilst mindful that of course everyone needs to be safe, the way to achieve safety is to stop hurting the autistic children. Punishing them for responding to pain is not something any of us need to do.

Ann’s Autism Blog: Autism, School, Exclusion. What’s fair?

Supporting Someone Through a Meltdown

Meltdowns are hideous. And they are not the same as temper tantrums.

They’re not behaviour; they’re a neurological reaction.

A reaction to too much.

Too much change.
Too much surprise.
Too much information.
Too much stress.
Too much stimulation.
Too much worrying.
Too much interaction.
Too much time spent making oneself “acceptable”.
Too much time without sleep.
Too much energy expended.

And this is the same for autistic children and autistic adults.

The neurotypical world is hard for us. There’s much that I love about my brain, and being the way I am. But know this: we have to work hard every day to exist in a world that isn’t our own.

And so, if you see an autistic person who is experiencing a meltdown, be gentle with us. Give us space if we need it.

We suffer enough at unintentionally becoming public spectacles. Even if you don’t understand it, be compassionate. So don’t gawp. Don’t point. Don’t stare. Don’t ridicule, berate or attack us.

Don’t punish us.

If you love and care for an autistic person, notice when things seem to be getting too much. Don’t express unreasonable demands or make any but the most necessary of changes. Keep the environment as gentle and calming as possible.

And if they do come crashing down, give them time to rest and recover afterwards. They will be worn out. Emotionally, mentally, and physically. Look after them, but respect them.

And overall, be kind.

On meltdowns | The Misadventures of Mama Pineapple

The NEST Approach

Supporting autistic young people with meltdowns

• STEP 1: NURTURE
  • Be calm
  • Use distractions
  • Be wary of physical touch
  • Keep your distance
  • Slow your movement down
  • Gestures can be misinterpreted
  • Avoid gathering staff
  • Remove other people
  • Avoid direct eye contact
  • Tactically withdraw from the person
  • Reduce demands
  • Remove environmental triggers
  • Be flexible with the rules
• STEP 2: EMPATHISE
  • Initial enquiry
  • Understand more
    • Try to understand their perspective
    • Stay impartial and show no signs of judgement
    • Recognise and communicate their emotions.
• STEP 3: SHARING CONTEXT
  • Example starting phrases
  • When talking about concerns…
    • How the problem is affecting them
    • How the problem is affecting others
• STEP 4: TEAMWORK
  • Initial enquiry
  • When you are problem solving
    • Don’t just put the onus on the young person
    • Work out the probability of the solution being successful
    • Remember you should focus on solutions that focus on meeting needs/ fixing underlying reasons
    • You don’t have to come up with solutions straight away
  • Important key factors
    • Make sure the proposed solutions are possible from both sides, and address everyone’s concerns.
    • The teamwork step always ends with agreeing to start this process from the beginning if your proposed solution does not stand the test of time.

Understanding Meltdowns | Autism Barriers to Education

Get the NEST approach as a PDF.

Stop freakin’ us out.

Everyone looks very strange today
All of their faces seem to be washed away
Everyone's talking, I can't hear a thing
I'm on the moon, why is the sky so green

I think I'm walking up the stairs
While I'm sitting right down in my chair
I feel so light, but I'm not
Everything is gonna go when it's hot

Or am I
Freakin out, freakin out, freakin out
Freakin out, freakin out, freakin out
Freakin out, freakin out, freakin out
Freakin out, freakin out, freakin out

Or are you freakin out

--Freakin' Out by Death

Further Reading