Learning disabilities &Autism

Getting the help your child needs

Parents with children with learning disabilities and autism often find themselves hitting their heads against a brick wall when it comes to getting their children diagnosed. After working with many parents it is notable that a child's behaviour difficulties which usually gets raised by the school usually end up with social services involvement. Sadly social workers are not trained to look for the possibility of a diagnosis and they will tend to look to the parents for reasons for the child’s difficulties. Where there are two separated parents blaming each other the finger gets pointed towards the parent with care of the child. This inevitably leads to child conferences being held and the child may end up on the child protection register which then snowballs as other children under that parent's care also come under scrutiny. Because the child’s behaviour will not improve social services then look to the courts for the removal of the child and usually the child’s siblings on an interim order. This is to assess the child whilst out of the parent’s care. Many children in desperate need of a diagnosis end up in foster care or with a relative under a special guardianship order. Wherever possible it is much better for the children and the parents to have their children placed with a relative. An interim order may eventually become a full care order but this will go through many processes beforehand. As a mother of two sons, one with a learning disability and the other with autism I have been through this process myself as well as having lost my sons and their siblings to this wicked practice. I also work with many parents with children whose children are clearly in need of a diagnosis. Far too many end up in foster care where the placements repeatedly break down as the foster carer also finds the child to be in need of a diagnosis yet under the label given to Foster parents as “professional parents” and as a professional parent, they should be able to cope and manage the child and “make them better.” Even where it becomes apparent that the problem was never parenting the after all still if the natural parent attempts to discharge the care order now having just a little evidence that they are able to obtain from the school that the child is not thriving as they should the response is always that the child is now “settled in their placement”. The natural parent finds themselves frustrated and with limited contact whilst services attempt to keep as much information from the parent as possible.

Every parent is entitled to information through a subject access request. However here too a parent finds themselves unable to obtain their own children’s information. Any complaint to the council returns the request with the same answer. That the child does not want the parent to have any information on them. In so many cases they remove children especially children with special needs, even where the child is expressing a wish to remain with their natural parent, that they do not have the capacity to make decisions in their own best interests. Yet it is so that when it comes to allowing information to be passed to the natural parent the child’s voice is used to not allow this. These abuses of power are used repeatedly throughout cases.

The greatest difficulty for parents is they are burdened with blame for something that is not their fault, usually labelled with FII. FII occurs when a carer deliberately causes a child to display symptoms of a particular illness or general unwellness to gain medical attention. There are three main forms; fabrication, falsification or inducement. ... If a child is deemed to be suffering or at risk of harm, a referral to social services will be made but where a judge has made a decision it is very hard to turn this around. Even where the child’s behaviour and needs continue to be addressed in many cases, the parent with care is seen as the danger. FII is very rare, yet it is used against parents in too many cases that children lose the one parent who was desperate to get them the right diagnosis and therefore the right support for their needs. This is why it is so important for parents to work together against services and to argue for a diagnosis together rather than blaming each other. Parents must put their children’s needs before their own needs to convince the judge of the other parent’s issues.

In my own case, my sons returned to my care still needing a diagnosis. My third son was not diagnosed with autism until he was 21. After struggling through special school after special school and twice being expelled.

Many parents find that professionals are not trained to understand special needs. Whether this is medically emotionally or psychologically there is just not enough trained professionals that really know the various aspects of the different needs of every diagnosed child.

Parents who find themselves in this position urgently need to watch the video below. Paula’s story ripped my soul apart when I learned about what she and her family and not least Oliver himself was put through. Now after the tragic loss of Oliver Paula is doing everything to get social workers and medical professions educated on children with special needs. Especially the use of medication on children with special needs when Oliver a bright amazing young man tragically and avoidably died due to the professional’s ignorance of his needs. This tragic event has led to this.

‘Right to be heard: The Government’s response to the consultation on learning disability and autism training for Health and care staff

Foreword by Caroline Dinenage Among deep concerns about health inequalities and disproportionate numbers of potentially avoidable deaths of people with a learning disability, this government commissioned the Learning Disability Mortality Review (LeDeR) Programme. The findings from LeDeR reinforce just how much more Government, and our health and care system, need to do to give people with learning disabilities the good quality health and social care that they ought to expect as a right. Care that the LeDeR reports demonstrate is all too often denied. This is simply not good enough. A common theme in the deaths reviewed by the LeDeR programme was the need for better training and awareness of learning disabilities. The same is true of autism. In responding to the second annual report of the LeDeR programme, the Government set out a series of actions, including a commitment to consult on, and implement, mandatory learning disability and autism training. The importance of this training was really brought home to me in October last year when I responded to a debate in Parliament on learning disability and autism training for healthcare professionals. This was a response to Paula McGowan’s petition calling for this training to be mandatory for all health and care staff. Hearing Paula’s testimony, I was both moved and inspired by how she had turned the grief of losing her son, Oliver, into a powerful campaign highlighting the importance of a greater awareness of the needs of autistic people and people with learning disabilities. During the debate, I heard very clearly how a better understanding of learning disability and autism would have categorically changed his experience and could have resulted in an entirely different outcome for Oliver. Sadly, Oliver’s story is not unique, and I am both saddened and frustrated by other stories I have heard of tragic and potentially preventable deaths. Like that of Richard Handley, who may still be with us if staff had the appropriate skills and knowledge to better understand his needs. I was also struck by the case in the recent Healthcare Safety Investigation Branch Bulletin, in which a young female patient died as a result of an undetected heart problem. The report highlighted that there is a lack of training and awareness within mainstream healthcare services on how to tailor care for patients with autism and learning disabilities. These stories, and too many more, emphasise the very urgent need to improve the experiences of people with learning disabilities and autistic people when accessing health and social care services. In consulting on proposals for mandatory training for health and care staff, our aim has been to gain a better understanding of how to ensure that patients and service users receive safe, effective and dignified care and that those who provide care have the knowledge, skills and behaviours to support people with learning disabilities and autistic people. ‘Right to be heard’: The Government’s Response to the Consultation on learning disability and autism training for Health and care staff 3 I know that the proposed approach of making learning disability and autism training mandatory may seem a strong response and even, to some, an unnecessary step. However, we know from the LeDeR review process that people with a learning disability can experience hospitalisation, life-threatening illnesses, and even premature death when unable to access health services for even the most routine conditions or ailments. It remains a stark fact that people with learning disabilities die, on average, 20 years earlier than the general population, and that both they and autistic people continue to experience significant disparities in the quality of care and support they receive, as well as in the outcomes they can expect. As with earlier reports, from Mencap and many others, the LeDeR programme reinforces that a new approach is now desperately needed to give people with learning disabilities and autistic people the care they deserve. I am pleased to be able to report on the outcome of our consultation and am grateful to all those individuals and organisations that have taken the time to contribute their views. We had over 5,000 responses, which is a testament to how important this issue is to people. I am also very pleased to say that support for the principle of mandatory training was overwhelmingly positive, with a clear recognition that an understanding of autism and learning disability is the cornerstone of good quality care and can make a real difference to hundreds of thousands of lives. I also recognise that we need to get this right to avoid turning any training effort into a box-ticking exercise and to ensure its impact. Our proposed way forward takes this into account. I am determined that everybody who has a learning disability or is autistic receives high-quality care that meets their needs and their expectations. In life, Oliver, Richard and too many others had a right to be listened to and their needs understood but tragically this was not always the case. We owe it to their memory that people with learning disabilities and autistic people are supported to live healthy and happy lives. They deserve nothing less.

Caroline Dinenage Minister of State for Care, Department of Health and Social Care

Oliver McGowan’s mandatory training has come about due to the tragic avoidable death of Paula McGowan’s beloved son Oliver.

Taken from, https://www.olivermcgowan.org/about_us

Paula McGowan OBE

Paula McGowan grew up in Liverpool and is married to Tom McGowan who is a Senior Officer in the Air Force. Paula is an early year’s teacher and specialises in children who have additional needs.

Paula is a Multi Award-winning Activist who has dedicated her life to campaigning for equality of Health and Social Care for Intellectually Disabled and or Autistic people. She is an ambassador for several charities and organisations. In 2018, Paula successfully launched a parliamentary petition asking for doctors and nurses in England to receive mandatory training in Learning disability and Autism awareness. As a direct consequence Government announced that Health and Social Care Staff would receive The Oliver McGowan Mandatory Training in Learning Disability and Autism.

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/844356/autism-and-learning-disability-training-for-staff-consultation-response.pdf

In June 2021 Paula was conferred into the Membership of The Most Excellent Order of the British Empire and was appointed Officer of the Order of the British Empire (OBE) to reward outstanding service to People with Autism and Intellectual Disabilities.

Paula continues to work with Government, Health Education England and Skills for Care in the design and development of Oliver’s training. She speaks at universities, medical schools and hospital trusts across the Globe. Recently Paula spoke for The Australian Royal Commission hearing 6, Psychotropic medication, behaviour support and behaviours of concern.

Paula has co-authored several papers which have been published in the

British Medical Journal

https://europepmc.org/article/med/30567853

https://dtb.bmj.com/content/57/1/10.info

https://blogs.bmj.com/bmjleader/2021/04/27/what-have-i-learnt-from-olivers-story-by-jim-thomas-and-paula-mcgowan/

Follow Paula on Twitter: @PaulaMc007

Further help with Allegations of FII can be found here at Fight back.

Further information on Learning disability and autism diagnosis

A Parent’s Guide to Symptoms and Diagnosis on the Autism Spectrum

Autism is a spectrum disorder, meaning that there is a wide degree of variation in the way it affects people. Every child on the autism spectrum has unique abilities, symptoms, and challenges. Learning about the different autism spectrum disorders will help you better understand your own child, get a handle on what all the different autism terms mean, and make it easier to communicate with the doctors, teachers, and therapists helping your child. Many children’s diagnosis is missed until way into their teens and adulthood. Become a part of the fight to make sure our children are properly diagnosed before services start discussing “out of parental control children” and “poor parenting.”

Understanding autism spectrum disorders

Autism is not a single disorder, but a spectrum of closely related disorders with a shared core of symptoms. Every individual on the autism spectrum has problems to some degree with social interaction, empathy, communication, and flexible behaviour. But the level of disability and the combination of symptoms varies tremendously from person to person. In fact, two kids with the same diagnosis may look very different when it comes to their behaviours and abilities.

If you’re a parent dealing with a child on the autism spectrum, you may hear many different terms including high-functioning autism, atypical autism, autism spectrum disorder, and pervasive developmental disorder. These terms can be confusing, not only because there are so many, but because doctors, therapists, and other parents may use them in dissimilar ways.

But no matter what doctors, teachers, and other specialists call the autism spectrum disorder, it’s your child’s unique needs that are truly important. No diagnostic label can tell you exactly what challenges your child will have. Finding treatment that addresses your child’s needs, rather than focusing on what to call the problem, is the most helpful thing you can do. You don’t need a diagnosis to start getting help for your child’s symptoms.

What’s in a name?

There is understandably a great deal of confusion about the names of various autism-related disorders. Some professionals speak of “the autisms” to avoid addressing the sometimes subtle differences among the conditions along the autism spectrum. Up to 2013, there were five different “autism spectrum disorders.” The differences among those five were hard to understand for parents trying to figure out which—if any—of these conditions affected their child. My own son was born in 1997 and so when he started to present with difficulties, because I already had a son with learning disabilities they tended to assume the same in my son R When assessed for autism, however, because he presented as having empathy this meant that he did not meet the criteria for a diagnosis. The reality is that he did have empathy, in fact, he was so empathetic towards others it was overwhelming for him. The American Psychiatric Association attempted to simplify matters by combining the pervasive developmental disorders into a single diagnostic classification called “Autism Spectrum Disorder” in the latest edition of the diagnostic bible known as the Diagnostic and Statistical Manual of Mental Disorders. Since many people were diagnosed prior to the change in the classification system and since many professionals still refer to the pre-2013 labels, we summarise them here for your reference. For purposes of clarity, we emphasise that all of the following conditions are now encompassed under the umbrella classification “Autism Spectrum Disorder” (ASD).

The three most common forms of autism in the pre-2013 classification system were Autistic Disorder—or classic autism; Asperger’s Syndrome; and Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS). These three disorders share many of the same symptoms, but they differ in their severity and impact. Autistic disorder was the most severe. Asperger’s Syndrome, sometimes called high-functioning autism, and PDD-NOS, or atypical autism, were the less severe variants. Childhood disintegrative disorder and Rett Syndrome were also among the pervasive developmental disorders. Because both are extremely rare genetic diseases, they are usually considered to be separate medical conditions that don’t truly belong on the autism spectrum.

In large part due to inconsistencies in the way that people were classified, all of the above-named variants of autism are now referred to as “Autism Spectrum Disorder.” The single label shifts the focus away from where your child falls on the autism spectrum to whether your child has Autism Spectrum Disorder. If your child is developmentally delayed or exhibits other autism-like behaviors, you will need to visit a medical professional or a clinical psychologist who specializes in diagnostic testing for a thorough evaluation. Your doctor can help you figure out whether your child has Autism Spectrum Disorder and how severely he or she is affected.

Keep in mind that just because your child has a few autism-like symptoms, it doesn’t mean he or she has Autism Spectrum Disorder. Autism Spectrum Disorder is diagnosed based on the presence of multiple symptoms that disrupt a person’s ability to communicate, form relationships, explore, play, and learn. (Note: In the DSM-5, the latest version of the diagnostic “Bible” used by mental health professionals and insurers, deficits in social interaction and communication are lumped together in one category. We present problems with social skills separately from problems with speech and language, to make it easier for parents to quickly identify symptoms.)

Social behavior and social understanding

Basic social interaction can be difficult for children with autism spectrum disorders. Symptoms may include:

Unusual or inappropriate body language, gestures, and facial expressions (e.g. avoiding eye contact or using facial expressions that don’t match what he or she is saying)
Lack of interest in other people or in sharing interests or achievements (e.g. showing you a drawing, pointing to a bird)
Unlikely to approach others or to pursue social interaction; comes across as aloof and detached; prefers to be alone
Difficulty understanding other people’s feelings, reactions, and nonverbal cues
Resistance to being touched
Difficulty or failure to make friends with children the same age

Speech and language

Many children with Autism Spectrum Disorder struggle with speech and language comprehension. Symptoms may include:

Delay in learning how to speak (after the age of two) or doesn’t talk at all
Speaking in an abnormal tone of voice, or with an odd rhythm or pitch
Repeating words or phrases over and over without communicative intent
Trouble starting a conversation or keeping it going
Difficulty communicating needs or desires
Doesn’t understand simple statements or questions
Taking what is said too literally, missing humor, irony, and sarcasm

Restricted behavior and play

Children with Autism Spectrum Disorder are often restricted, rigid, and even obsessive in their behaviors, activities, and interests. Symptoms may include:

Repetitive body movements (hand flapping, rocking, spinning); moving constantly
Obsessive attachment to unusual objects (rubber bands, keys, light switches)
Preoccupation with a narrow topic of interest, sometimes involving numbers or symbols (maps, license plates, sports statistics)
A strong need for sameness, order, and routines (e.g. lines up toys, follows a rigid schedule). Gets upset by change in their routine or environment.
Clumsiness, abnormal posture, or odd ways of moving
Fascinated by spinning objects, moving pieces, or parts of toys (e.g. spinning the wheels on a race car, instead of playing with the whole car)
Hyper- or hypo-reactive to sensory input (e.g. reacts badly to certain sounds or textures, seeming indifference to temperature or pain)

How children with Autism Spectrum Disorder play

Children with Autism Spectrum Disorder tend to be less spontaneous than other kids. Unlike a typical curious little kid pointing to things that catch his or her eye, children with ASD often appear disinterested or unaware of what’s going on around them. They also show differences in the way they play. They may have trouble with functional play, or using toys that have a basic intended use, such as toy tools or cooking set. They usually don’t “play make-believe,” engage in group games, imitate others, collaborate, or use their toys in creative ways.

Related signs and symptoms of Autism Spectrum Disorder

While not part of autism’s official diagnostic criteria, children with autism spectrum disorders often suffer from one or more of the following problems:

Sensory problems – Many children with autism spectrum disorders either underreact or overreact to sensory stimuli. At times they may ignore people speaking to them, even to the point of appearing deaf. However, at other times they may be disturbed by even the softest sounds. Sudden noises such as a ringing telephone can be upsetting, and they may respond by covering their ears and making repetitive noises to drown out the offending sound. Children on the autism spectrum also tend to be highly sensitive to touch and to texture. They may cringe at a pat on the back or the feel of certain fabric against their skin.

Emotional difficulties – Children with autism spectrum disorders may have difficulty regulating their emotions or expressing them appropriately. For instance, your child may start to yell, cry, or laugh hysterically for no apparent reason. When stressed, he or she may exhibit disruptive or even aggressive behavior (breaking things, hitting others, or harming him or herself). The National Dissemination Center for Children with Disabilities also notes that kids with ASD may be unfazed by real dangers like moving vehicles or heights, yet be terrified of harmless objects such as a stuffed animal.

Uneven cognitive abilities – ASD occurs at all intelligence levels. However, even kids with normal to high intelligence often have unevenly developed cognitive skills. Not surprisingly, verbal skills tend to be weaker than nonverbal skills. In addition, children with Autism spectrum disorder typically do well on tasks involving immediate memory or visual skills, while tasks involving symbolic or abstract thinking are more difficult.

Savant skills in autism spectrum disorder

Approximately 10% of people with autism spectrum disorders have special “savant” skills, such as Dustin Hoffman portrayed in the film Rain Man. The most common savant skills involve mathematical calculations, calendars, artistic and musical abilities, and feats of memory. For example, an autistic savant might be able to multiply large numbers in his or her head, play a piano concerto after hearing it once, or quickly memorize complex maps.

Getting an autism spectrum disorder diagnosis

The road to an ASD diagnosis can be difficult and time-consuming. In fact, it is often two to three years after the first symptoms of ASD are noticed before an official diagnosis is made. This is due in large part to concerns about labeling or incorrectly diagnosing the child. However, an ASD diagnosis can also be delayed if the doctor doesn’t take a parent’s concerns seriously or if the family isn’t referred to health care professionals who specialize in developmental disorders.

If you’re worried that your child has ASD, it’s important to seek out a clinical diagnosis. But don’t wait for that diagnosis to get your child into treatment. Early intervention during the preschool years will improve your child’s chances for overcoming his or her developmental delays. So look into treatment options and try not to worry if you’re still waiting on a definitive diagnosis. Putting a potential label on your kid’s problem is far less important than treating the symptoms.

Diagnosing Autism Spectrum Disorder

In order to determine whether your child has autism spectrum disorder or another developmental condition, clinicians look carefully at the way your child interacts with others, communicates, and behaves. Diagnosis is based on the patterns of behavior that are revealed.

If you are concerned that your child has autism spectrum disorder and developmental screening confirms the risk, ask your family doctor or pediatrician to refer you immediately to an autism specialist or team of specialists for a comprehensive evaluation. Since the diagnosis of autism spectrum disorder is complicated, it is essential that you meet with experts who have training and experience in this highly specialized area.

The team of specialists involved in diagnosing your child may include:

Child psychologists
Child psychiatrists
Speech pathologists
Developmental pediatricians
Pediatric neurologists
Audiologists
Physical therapists
Special education teachers

Diagnosing Autism Spectrum Disorder is not a brief process. There is no single medical test that can diagnose it definitively; instead, in order to accurately pinpoint your child’s problem, multiple evaluations and tests may be necessary.

Getting evaluated for Autism Spectrum Disorder

Parent interview – In the first phase of the diagnostic evaluation, you will give your doctor background information about your child’s medical, developmental, and behavioral history. If you have been keeping a journal or taking notes on anything that’s concerned you, share that information. The doctor will also want to know about your family’s medical and mental health history.

Medical exam – The medical evaluation includes a general physical, a neurological exam, lab tests, and genetic testing. Your child will undergo this full screening to determine the cause of his or her developmental problems and to identify any co-existing conditions.

Hearing test – Since hearing problems can result in social and language delays, they need to be excluded before an Autism Spectrum Disorder can be diagnosed. Your child will undergo a formal audiological assessment where he or she is tested for any hearing impairments, as well as any other hearing issues or sound sensitivities that sometimes co-occur with autism.

Observation – Developmental specialists will observe your child in a variety of settings to look for unusual behavior associated with the Autism Spectrum Disorder. They may watch your child playing or interacting with other people.

Lead screening – Because lead poisoning can cause autistic-like symptoms, the National Center for Environmental Health recommends that all children with developmental delays be screened for lead poisoning.

Depending on your child’s and symptoms and their severity, the diagnostic assessment may also include speech, intelligence, social, sensory processing, and motor skills testing. These tests can be helpful not only in diagnosing autism, but also for determining what type of treatment your child needs:

Speech and language evaluation – A speech pathologist will evaluate your child’s speech and communication abilities for signs of autism, as well as looking for any indicators of specific language impairments or disorders.

Cognitive testing – Your child may be given a standardized intelligence test or an informal cognitive assessment.

Adaptive functioning assessment – Your child may be evaluated for her/his ability to function, problem-solve, and adapt in real-life situations. This may include testing social, nonverbal, and verbal skills, as well as the ability to perform daily tasks such as dressing and feeding him or herself.

Sensory-motor evaluation – Since sensory integration dysfunction often co-occurs with autism, and can even be confused with it, a physical therapist or occupational therapist may assess your child’s fine motor, gross motor, and sensory processing skills.

Meltdowns

Meltdowns are an awful experience; both for your child and for you. Seeing your child suffer so badly can be heart-wrenching, and keeping them safe while it’s happening can be back-breaking.

Child crying© Photo by Sara Dunn

If your son or daughter has autism, chances are you’re no stranger to the meltdown. Whether they explode out of nowhere or emerge from a tantrum as it gets further out of control, you’ll know it when you see it.

The threat of the meltdown hovers over a great deal of life with autism. They aren’t done manipulatively – in essence, they’re a loss of control – but knowing they can happen adds an extra level of pressure to every stressful situation.

What exactly is a ‘meltdown’?

‘Meltdown’ isn’t a technical term; you aren’t likely to find it in any official language. (‘Behaviour that challenges’ is more what you’re likely to hear, though that covers a lot of other behaviours as well.) It is, however, one of those terms that seems to have emerged spontaneously because almost everyone who’s seen a certain kind of behaviour applies the same word to it.

So, what is it? Basically, it’s a complete loss of behavioural control. A person having a meltdown tends to scream, attack people, hurt themselves, break things, and generally go all-out. Once you reach meltdown point, they’ve pretty much lost it – and the chances are fair that they won’t be able to get hold of themselves for quite some time.

Meltdowns vs tantrums

If you’re not familiar with autism, you might be wondering, ‘Isn’t that just another word for a tantrum?’ Actually, no. People with autism are perfectly capable of having tantrums, of course – pretty much anyone can have one – but a meltdown is somewhat different.

What's the difference?

Intention

A tantrum is basically a bid for attention or control. You’ll notice that a tantrumming child often sneaks the odd glance at their parent or caregiver to see if it’s working. A meltdown has no plan, and often seems as if the boy or girl can hardly tell what other people around them are thinking, never mind trying to manipulate them.

Control

A child having a tantrum has some control over what they do. They may go all-out to convince you they don’t, and there’s probably genuine distress in amongst the histrionics, but they aren’t in psychological free-fall. A tantrumming child may also pick their location for maximum effect – making sure there’s a public audience, for example : they’re aware of their surroundings. With a meltdown, the child has completely lost control: they’re absolutely overwhelmed with distress and there’s nothing they can do about it.

Recklessness

A child having a tantrum still has some sense of where the limits are. They may hit someone else, but they probably won’t hurt themselves, or at least not on purpose.
With a child having a meltdown, the brakes are off completely. They’re too far gone to have any sense of what might or might not be dangerous, and people can get genuinely hurt.

Resolution

A tantrum is generally aimed at getting something; if you give the tantrumming child what they want, they’ll generally stop in an instant. (It’s not the best way to deal with a tantrum, of course, but the fact that a child can stop if they get what they want shows they’re still basically in control of themselves.) Whether you give in or not, you do need to do something to resolve a lot of tantrums: they’re intended to influence people and will carry on until it becomes clear whether or not that’s going to work.

With a meltdown, on the other hand, it can carry on even if you do give the child their way over whatever started the meltdown in the first place: their distress has started to feed on itself and can’t be ‘turned off’. However, the meltdown can gradually calm down at its own pace whether you give the child their way or not: it’s a storm that needs to blow itself out.

What sets a meltdown off?

Once it gets going a meltdown doesn’t need a reason to carry on, but they don’t happen for no reason in the first place. Exactly what causes them varies from individual to individual and meltdown to meltdown, but some common starting points are:

Sensory overload

Many children with autism have hypersensitive hearing, touch etc, and if they get too much stimulation at once they can panic.

Information overload

If a child has intellectual difficulties along with their autism – which isn’t universal, but it affects some kids – then getting too much complexity at once leads to desperate confusion. The ‘too much’ can sometimes be things that seem quite simple to a neurotypical adult, such as complex language or trying to manage several instructions at once, but if they aren’t simple for the child, then meltdown can result.

Emotional overload

If someone has difficulties expressing themselves it can be hard for them to understand and manage their own feelings, and hard to ask for help dealing with them. As a result, if an emotion hits them suddenly, it can hit them hard, and down they go. This is one that can be quite a problem for hormonal teenagers; our feelings get more complex post-puberty and can be a lot to deal with, so, for instance, a girl struggling with PMS may have a meltdown because the emotions are too much to handle.

Too many demands

Or demands too complex to cope with. Autism makes it harder to process information: if you’re being required to do something and you don’t understand or don’t know how, being prompted too many times can lead to meltdown.

Too much unpredictability

Autism causes difficulties with flexible thinking; if things go as expected then it’s manageable, but if something happens that they weren’t prepared for, an autistic boy and girl can have a meltdown because they feel unsafe. These changes don’t have to be big; they can be as simple as a jacket zip getting stuck: normally it works, this time it doesn’t, and it’s just too much.

What starts as a tantrum can spiral out of control. Kids with autism often have difficulty regulating their own emotions. They can also be pretty rigid in wanting their own way, and it’s neither realistic nor reasonable to say ‘yes’ to everything. As a result, tantrums can be a regular part of life for many families – but if the frustration of an ordinary tantrum passes a certain tipping point, it turns into a meltdown and gets out of control.

Heading it off before it happens

The best thing for everyone is if you can stop the meltdown before it really gets going. Of course, this is easier said than done – some kids with autism have a harder time managing their feelings than others, and some give more warning of impeding meltdown than others – but there are some signs to watch out for:

Asking to leave the area or take a break.

Physical signs of tension and anxieties such as increased fidgeting or stimming. ‘Stimming’ is short for self-stimulatory behaviour, and includes things like rocking, pacing or flapping. People with autism often use stimming to manage their anxiety levels or sensory input, so if your son or daughter is doing more of it, that’s sometimes a sign that those levels are rising.

Bolting or running away. Some kids with autism just like to run for fun and don’t think about the consequences, but sometimes a dash can be an attempt to get away from a situation or environment that’s overloading them.

These are just examples; your son or daughter’s signs will be particular to him or her. A good way to get the measure of them is to use what’s known as an ‘ABC chart’, the ‘ABC’ standing for ‘Antecedent, Behaviour, Consequence’.

You write down what happened just before the meltdown (or other problem), what your son or daughter did, and what happened as a result. As you fill in more and more charts, you may start to see patterns emerging, which can point you towards what’s causing the meltdowns. You can read more about ABC charts and find some examples on the Special Connections website.

Assuming you do become a meltdown early-warning expert, what do you do about it? The key thing is to calm your son or daughter down.

You can use verbal reassurance, visual reminders to help them understand things, distract them or redirect them to another activity, remove the thing that’s upsetting them or else remove them from the environment. If you know what’s building up the tension, do what you can to put some kind of buffer between that and your child; hopefully that’ll break the escalation before it reaches meltdown point.

If a meltdown starts

Even with the best parenting, you may not always be able to head off every meltdown: the world is a stressful place for many kids with autism and you can’t control every corner of it. If worst comes to worst and a meltdown gets underway, what do you do?

The first point is safety. If your child is small enough, you might physically hold them to make sure they don’t run under a car or fall down a flight of steps, but if you’re dealing with a strong young adult, that may just not be possible.

In that situation, you’re probably well advised to equip yourself in advance – a crash mat to use in the house, for instance (either for them to lie on or to block them if they run at a wall), plus keeping the rooms they frequent as free of breakables as possible.

If meltdowns are a regular feature of life and your son or daughter is too big for you to manage, then it’s time to call in help: there’s a limit to what you can physically do and you shouldn’t endanger either them or yourself.

Meltdowns can happen anywhere, and this includes in public. Again, if your son or daughter is too strong for you to handle safely, you need to start talking to social services about getting more intensive support.

Meltdowns are an awful experience; for your son or daughter and for you. Seeing your child suffer so badly can be heart-wrenching, and keeping them safe while it’s happening can be back-breaking. The positive thing to remember about meltdowns is that they do tend to burn themselves out. If you’re able to reassure or distract your son or daughter then that can help the process along – though it’s very hard to get through to a child in the middle of a meltdown – but they pass eventually.

Who can talk to if I need help?

The Challenging Behaviour Foundation, has a lot of practical advice including a top ten tips on negotiating what is required from your local authority in supporting challenging needs.

Great Ormond Street Hospital has produced a useful booklet on understanding behaviour (PDF) which gives details on dealing with behaviours that challenge and who to seek help from.

Last updated: 27 September 2017Related topics: Behaviour