Meltdowns, shutdowns, sensory seeking, stimming, demand avoidance - none of this is bad or challenging behaviour.
I talk from personal experience as an autistic person who experiences meltdowns and demand avoidance; I am also the parent of an autistic/PDA young person, who I had to protect from clinicians- who wanted to chemically restrain him with anti-psychotics, because of his extreme levels of distress. Myself and others close to me had experiences of autistic meltdowns that led to physical fights, punching and being punched, being bitten, being significantly bruised, rooms trashed, furniture thrown from windows, windows smashed and police being called. Sadly the police attending a situation when an autistic person is experiencing a meltdown often leads to restraint and arrest (or worse). I was once asked if I wanted to press charges against my son after a meltdown- of course I didn’t and I never would.
Meltdowns are an involuntary trauma/fear response - fight,fllight. They are not tantrums or bad behaviour. They are not attention seeking or trying to get control. They might be due to loosing autonomy, but wanting autonomy and wanting control are very different things in my opinion. Meltdowns can be triggered by many things inc sensory overload, emotional overload and dysregulation, loss of autonomy, too many demands and expectations, and so many other things. The autistic person is scared, terrified even.
The way autistic people experience and express distress (which can so often be suppressed by masking) is seen by many as disordered and challenging behaviour and we may even be deemed dangerous. Those autistic people who are marginalised further because of race for example, can experience significant reactions to their distress and this can lead to harm and even death The truth is that our suffering and distress as autistic people is ultimately due mostly to stigma, ableism, the lack of safe environments for autistic people and the fact we live so much of our lives in survival mode (in fight, flight, freeze, fawn). Stigma leads to victimisation and 50-89% of autistic people report having been victimised by people they know https://www.researchgate.net/publication/360576672_'Professionals_are_the_hardest_to_trust'_Supporting_autistic_adults_who_have_experienced_interpersonal_victimisation (Rose and Pearson). This leads to exhaustion, burnout, mental health problems and suicidality (autistic people are 9 times more likely to die by suicide).
Autism is not a mental disorder but a naturally occurring neurotype, and yet we are more likely than neurotypical people to be medicated with anti psychotic drugs, with what is too often nothing less than liquid cosh! We find ourselves time and time again denied rights and respect; our ‘behaviours’ seen as inappropriate and needing intervention. We are defined by suffering, as though being autistic is a disorder that causes suffering (which of course it isn’t) and too often not even identified until we have reached crisis enough times and many not discovering they are neurodivergent until they are in prison even!
Both my own mother and a good friend both almost died because of these kinds of drugs being incorrectly administered (and then withdrawn suddenly). I appreciate that there are cases when anti psychotic drugs are life saving and necessary, but they are incredibly powerful drugs and have a huge impact upon your mind and body. These drugs should not be being used for people because they are autistic, especially children and young people. ‘Stopping over medication of people with a learning disability and autistic people’ (STOMP) and ‘supporting treatment and appropriate medication in paediatrics’ (STAMP) are both used within the NHS but why are these drugs being used at all in so many cases when clearly it is too often a total lack of understanding by clinical staff of things like PDA, co occurring ADHD and experiences like meltdowns, shutdowns, burnout and sensory overload etc.
Quetiapine, Respiradone and Pregablin are regularly prescribed to ‘help us’ with high levels of anxiety; this is mainly because the belief that autistic people are anxious because we are autistic. Even though I hate the DSM and its invalidating description of who I am (deficient, abnormal and impaired), nowhere in the DSM does it say that anxiety is an autistic ‘trait’; anxiety is not part of the diagnostic criteria for autism. Too many autistic people are detained, incarcerated, traumatised and harmed because of these and other misunderstandings and misinterpretations. The King’s speach promises the much needed change to the Mental Health Act regarding autistic people and hospitalisation, but unless there is a change in the understanding of things like how environments impact us and can lead to trauma, then what will happen to autistic people deemed unstable, dangerous, aggressive, challenging?
Dr Luke Beardon makes it clear that in relation to anxiety, the issue is not autistic individuals but in most cases the environment that is the issue- the people, systems and regimes in that environment: “Autism plus environment = outcome”. Environments include the dehumanising methods autistic people are often subjected to, such as compliance and social skills training (PBS and other forms of ABA), teaching autistic people how to socialise like neurotypical people and causing us to mask and burn out, or reinforcing positive behaviour with rewards meaning those with a PDA profile especially are utterly traumatised.
Now I need to also mention stimming here because it is often seen as a negative thing by many and especially misunderstood when it is self injurious. Stimming is something all humans do, but yet it is pathologised in autistic people. It is often seen as maladjusted behaviour, as inappropriate, limiting and described in DSM 5 as: “Stereotyped or repetitive motor movements, use of objects, or speech. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.”
Stimming is any self stimulatory repetitive movement usually, that can be physical, visual, auditory, vocal (and linked often to echolalia). Stimming can help regulate and ground an autistic person, bring joy and connection with their body- mind and even with others also. There are times when stimming is self injurous and harmful, such as headbanging, but it is still not wrong or challenging behaviour, but is an indication of the autistic person’s unmet needs, anxiety and need for regulation and often co regulation.
We need to change the narrative around what meltdowns (and other distress) are when seen in autistic people. When can learn to understand meltdowns through a nervous system lens (the person being in hyper arousal and in a state of fight, flight). Then in turn we can use the right support to help an autistic person experiencing what is often an exhausting experience.