Autistic meltdowns and shutdowns in adults: what helps and what to avoid

Leicestershire Partnership NHS Trust explains the difference through the body's fight, flight or freeze response. A meltdown is the fight response. It can be verbal, such as shouting, growling or crying, or physical, such as kicking or flapping, or both. A shutdown is the freeze response: the person may become unresponsive, find speaking hard or impossible, and want to hide somewhere dark and quiet. Autistica adds that a meltdown can include self-injury.

Why a meltdown is not a tantrumSection titled Why%20a%20meltdown%20is%20not%20a%20tantrum

The National Autistic Society is clear that a meltdown is not a temper tantrum and not bad or naughty behaviour. A tantrum has a purpose, such as getting something or avoiding something, and it tends to ease when that purpose is met. A meltdown has none. The Leicestershire trust describes it as a loss of control that is not aimed at getting support, which is why rewards, warnings and reasoning do not end one. NHS Scotland's guidance goes further and says neither meltdowns nor shutdowns should be viewed as challenging behaviour.

Why a shutdown is not ignoring youSection titled Why%20a%20shutdown%20is%20not%20ignoring%20you

During a shutdown the person may hear everything you say and still be unable to answer, move or make a choice. The silence says nothing about how they feel about you. Asking again, louder, adds to the overload that caused it.

Autism is not a mental illness and it is not a learning disability, although some autistic people also have one or the other. Autism in adults is the starting point for the rest of this part of the site, and disability care at home covers support more widely.

The early signs are specific to each person. The National Autistic Society calls this the rumble stage and lists pacing, asking the same question for reassurance, rocking, and becoming very still. The Leicestershire trust adds that a person may lose the ability to mask. At this stage, taking away the trigger, offering a quiet room or something calming, and staying calm yourself can sometimes stop a meltdown from happening. Sensory needs at home covers changes to the house that cut down overload before it builds.

1. 1

   Make the space safe

   First

   Move anything that could hurt the person or anyone else, and give them room. If other people are around, ask them to leave or to stop watching.
2. 2

   One calm person stays

   Not a crowd

   Autistica advises that one person takes the lead, because several people talking or helping at once adds to the overload. Stay to one side and at the person's level rather than standing over them.
3. 3

   Turn the input down

   Light, sound, people

   Turn off the television or music, dim bright lights, and close the door on a noisy room. If the person uses ear defenders, headphones or a weighted blanket, put them within reach.
4. 4

   Say very little

   Short and slow

   If you need to speak, use a few plain words in a slow, low voice. Ask once, calmly, whether they are all right, and allow much longer than usual for an answer.
5. 5

   Give it time

   At their pace

   The National Autistic Society says it can take a while to recover from sensory or information overload. Stay nearby, calm and quiet, and let the person decide when it is over.
6. 6

   Offer comfort only in the way they have asked for

   Their choice

   Some people want someone close during a meltdown, and others cannot bear to be touched. Follow what the person told you when they were calm. If you do not know, ask in as few words as possible and accept no as the answer.

A shutdown needs less of all of this. One short sentence about what happens next, such as "I will be in the kitchen, text me if you want anything", then quiet. Stay within reach if the person wants you there, and leave them alone if they do not. If anyone is hurt or at risk, the last section of this page says who to ring.

Restraint is a legal question as well as a practical one. Section 6 of the Mental Capacity Act 2005 says that restraining an adult who lacks capacity is only protected where the person doing it reasonably believes it is necessary to prevent harm to them, and where it is in proportion to how likely and how serious that harm is. An autistic adult who has capacity makes their own decisions, including about being touched. Mental capacity and how it is assessed explains what capacity means.

Where an autistic person also has a learning disability and hurts themselves or other people, families are sometimes offered a positive behaviour support plan, which challenging behaviour and positive behaviour support explains. That page is written for families of adults with a learning disability, and a meltdown on its own is not challenging behaviour.

Nobody needs to be blamed for a meltdown, including the person who had it. If the person wants to, they can add what they learned to their own plan.

Keep it to one page so that it gets read, and give a copy to the people who need it. An autistic adult who has capacity decides who sees their information, so ask before you share it. Look at it again when something changes, such as a move, a new job or a new person helping at home. Autism support at home covers the rest of setting up support, including communication and routine.

Support from somebody outside the familySection titled Support%20from%20somebody%20outside%20the%20family

Some autistic adults want support at home from somebody who is not a relative, such as a calm person who knows the plan. Predictability and the same face matter a great deal to many autistic adults. On PrimeCarers the person, or the family where the person wants them involved, chooses the carer, meets them first, and agrees the hours, the routine and how contact works directly with them, and they can keep the same person for as long as it suits both of them. You can search for carers near you and compare their rates. Carers on PrimeCarers charge £18 to £25 an hour with our fee included, against £28 to £35 an hour at an agency.

PrimeCarers is an introductory service, not an agency or a care provider. Before a carer appears in a search we check their identity and right to work, confirm an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 18 months, and interview them online. Separately, carers are insured while they work. There is no way to search for carers by autism experience, and we do not check qualifications, training or references, so what a carer says about their experience is their own account on their profile, to ask about when you meet. Questions to ask at interview helps with that conversation.