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Supporting children and young people with autism

Information for parents and carers to support children and young people with autism.

What is autism?

Autism is a form of neurodivergence, a developmental difference currently defined by the presence of differences across a range of domains. Autistic people experience significant differences in processing sensory information due to how they allocate attention, which therefore rationally changes how that person responds to that information in the form of perception, communication, movement and behaviour.

Autistic people are all individual and that individuality is made of all the things that make all humans individual different. Despite those individual differences, the majority of Autistic people’s experiences of being Autistic is shared and relatable. Some Autistic people are able to learn, live and work independently, while others may have learning differences or co-occurring health conditions that require specialist support, or a combination of all. All Autistic people are connected by being Autistic and all autistic people can live healthy and happy lives if their needs are met.

Autism is classed as a disability in the UK and Autistic people should be offered the same legal protections and access to Benefits that any other Disabled person has, dependent on their individual needs.

How you might recognise an Autistic child

In order to identify if a person is Autistic or not and make a diagnosis, there generally needs to be identification of divergent developmental pathways taken as the person has grown up, alongside differences in attention, communication, behaviour, movement and sensory processing..

Identifying if someone is Autistic can be more difficult due to a number of reasons.  Co-occurring conditions can complicate matters, societal issues such as sexism and racism have contributed to underdiagnosis in certain groups including but not exclusive to: people assigned female at birth, people of non-white ethnic backgrounds and people who do not present with what might be considered a ‘typical’ presentation of being Autistic. Autistic people can also engage in Autistic Masking, a developmental trauma response present due to lack of support, unidentified needs going unmet, processes of normalisation and expectations that an Autistic person, whether identified as such or not, can be moulded into being a non-Autistic person, either by individuals or through societal expectations. Masking causes an Autistic person to suppress their natural behaviours and experiences and project what could be described as an acceptable version of themselves as a form of self-protection.

Things are further complicated by a general lack of understanding in Health, Education and Society at large, fuelled by stereotypes and generalisations within culture.

In order to obtain a diagnosis of autism, an individual must match the diagnostic criteria of autism (Please note these are a fluid criteria which change periodically).  These are grouped into the following three areas:

Communication

Communication can occur in a huge variety of different ways. The criteria tend to focus mainly on spoken communication and what it identifies as social communication. There are a lot of myths and misperceptions about Autistic people and social communication, particularly around eye contact and the use of facial expressions, so it’s important to learn to understand that your child’s communication needs validated and not corrected.

Autistic people may experience differences in speech. Some Autistic people are non-speaking, some speak minimally, some speak typically and others can be hyper-verbal. A person’s ability to speak or when they start speaking, if at all, can be dependent on a number of factors involving co-occurring conditions such as (but not limited to) Apraxia of speech, Anxiety, Situational Mutism and brain injuries.

Many Autistic people at different stages in their life may use more uncommon spoken communication methods such as (but not restricted to) Echolalia, where they may repeat words, phrases or noises; and Palilalia where there may be a delayed repetition of words, noises or phrases.

Some autistic people may have very good speech and language skills but may struggle to use their voice in social situations. This is often related to anxiety and the invalidation of their innate communication skills either in the moment or developmentally. Unfortunately Autistic communication skills are rarely validated or recognised by non-Autistic people.  Developmentally that can cause trauma and contribute to their reasons for Masking.

It is important to recognise that many Autistic people can experience some or all of these states throughout their lifespan and should be supported appropriately and validated to use whatever communication methods suit them best such as Sign language or the many various types of Augmented and Alternative communication and/or devices, rather than insisting on speech, or limiting them with basic communication tools indefinitely such as picture communication.

Social interaction

Social interaction is complicated. Coupled with the expectation that Autistic people use only non-Autistic communication, Autistic people are expected to conform to social norms and expectations in a social context, leading many Autistic people to struggle and at best engage in Masking.

As well as having difficulties in using non-Autistic communication as non-Autistic people would like Autistic people to use it in social interactions, autistic people tend to struggle with social situations in general.

The reasons for this are complex and mainly stem from not only Autistic people experiencing higher levels of trauma and therefore higher levels of anxiety, but also from the fact that Autistic people are neurologically different and therefore are working within a different social framework that society stubbornly refuses to recognise.

Often Autistic people are described as failing to understand and be empathic towards other people’s feelings and opinions. This is a misconstrued description that can be mitigated with further knowledge framed around how empathy can be expressed in many different ways, the interaction of trauma with an Autistic person’s ability to process their own emotional state, the way that many Autistic people can be emotional sponges and be quickly dysregulated by other people’s emotions and the lack of comprehension from others of how Autistic people work, but still the expectation that they act like non-Autistic people.

Misconceptions around this are underpinned by long debunked theories such as Mindblindeness, Theory of Mind and Weak Central Coherence and have been replaced with much more validating theories around Monotropism and Double Empathy, which have grown from work by Autistic scholars.

Due to these narratives Autistic people may find it challenging to make friends with non-Autistic people, and therefore, they may prefer to spend time alone where there aren’t as many non-Autistic social expectations placed on them. Sadly often Autistic people experience isolation and loneliness not because they struggle socially, but have been excluded from people who socialise like them

Behaviour

Autistic people may show behaviours non-Autistic people might consider unusual when playing, becoming excited about something, or going about their daily activities. Some Autistic Children may line up items to play or play with them in a way that non-Autistic people might not consider as play; or might not deem an appropriate use of the toy as it was intended.  We have to remember though that all play is subjective and there is no set of rules around how anyone should ‘play’. Lining things up may not be restricted to toys, it could be applicable to anything from clothes, to cuddly toys, to books or washing up! Not all Autistic children engage in what might be seen as repetitive play like this, but on various levels there is usually an element of repetitiveness, even down to a form of ‘play echolalia’ where the same scene may play out several times.

Often Autistic people can feel confronted by and feel anxious around direct play, so parallel play is an important of how Autistic people work best, where they are free to engage with what they are doing alongside, rather than with, someone else.

Autistic people often experience intense interests and can become especially interested in very specific things. The way Autistic people’s attention works can be described by the theory of Monotropism, which states that Autistic people can focus very strongly on several things very deeply and find it difficult to transition away from them, as opposed to Non-Autistic people, described as polytropic who can focus on a broader range of things and easier transition between them.

Monotropism does not apply just to specific interests, but absolutely anything that requires the Autistic person to focus their attention.  They need to take the time to focus and once they do inertia builds up to keep them focused. This explains why any sort of transition is harder and takes longer for Autistic people and can often lead to overwhelm and meltdowns; and why transitions of all sizes need to be prepared and given time to occur and enable the dysregulation experienced to settle.

The benefits of monotropic focus are that a person can achieve in-depth knowledge or have incredible results due to attention to detail and dedication. While Polytropic focus benefits from easier transitions, it could be argued that it results in a more superficial experience.   

Different sensory experiences

Autistic people can show different from ‘typical’ responses to different sensory information of all sorts, not just different textures, sounds, smells or tastes. Some people may experience pain in response to certain sensory stimuli that non-Autistic people might not, or hear, or perceive sensory information that non-Autistic people tend not to such as noise from lights or electricity buzzing in the walls.  Some responses to sensory information can be immensely disabling.

Sometimes responses to sensory information may be lacking or delayed.

This can cause differences in the way Autistic people behave or respond and often, this can lead to non-Autistic people, who do not experience the sensory environment in the same way to infer that how an Autistic person is acting is ‘bad’ behaviour, or that they are deliberately acting in a way to disrupt the social environment.  It can also be very easy for non-Autistic people to dismiss reports of sensory experiences, or not even consider that an aspect of the sensory environment may be playing a part in how that person is acting, simply because non-Autistic people experience the sensory world differently, or less intensely.

Sometimes a restricted diet may also be the result of sensitivity to certain food textures and tastes, but often there is the wider aspect of anxiety and food being one of the few things that an Autistic person can control in a world which pathologises everything they do.

Some Autistic people may make repetitive flapping, finger-twirling or other body movements. This is known as ‘stimming’ and is something all humans engage in.  In Autistic people, due to them experiencing sensory information differently and the very different body responses that causes, this behaviour can just be more obvious. It may be more noticeable when some Autistic people become excited or overwhelmed in some way, using this stimming behaviour to calm themselves down in situations of stress, whether positive or negative.  The process of stimming can also help an Autistic person process information, such as in the classroom, too often they are prevented from Stimming, which creates a barrier to learning.

These are just some of a huge range of examples of how you might recognise an Autistic person.  If you believe that a child or adult might be Autistic, it’s important to explore this more by seeking out the online Autistic community who can present you with a wealth of knowledge to help you understand more and also people who support Autistic people.  If you feel that a diagnosis would be beneficial is important to seek out your GP’s help.

Parents and carers

Parents and carers of autistic children and young people may experience a multitude of feelings and challenges.

There may be a significant emotional impact when your child is identified as Autistic, you may feel sad and confused, even guilty or resentful. 

While it is important to recognise your feelings, it is also important to remember that you child was also Autistic before they received their diagnosis. Nothing has changed. This is an opportunity for you to help them understand themselves, to help equip them for the challenges they will face from a world that doesn’t understand Autistic people and to help them seek out other Autistic people, from whom both they and you can learn and share your experiences.

It’s also important to recognise that many Autistic adults recognise that they are Autistic once their children are identified, so you may be dealing also with confusion related to yourself and your own identity.

Many of the reasons parents exclude themselves from being Autistic are because of the same narratives that meant that their children went unrecognised. There are many myths in society about autism and, unfortunately a lot of stigma.  Professionals are not always exempt from these beliefs too.

There are challenges that are often attributed to autism, but are actually attributal to issues within society.  There may be long waiting times to access diagnostic services, support services may also have long waiting times, not be appropriate or not even exist. Private services may be sought to speed up the process, or acquire additional services, but these can bring a significant cost. There can be barriers in place to getting the appropriate support and education.

Families may also feel overwhelmed by the amount of information available, and, conversely, the lack of high-quality information and resources about Autistic people. This may make it more difficult for parents and carers to fully understand the complexity of Autistic experience, and may also make conversations with extended family members, friends and schools more difficult. But it is always important to look to the people who are Autistic, as their experiences are vital in supporting your children.  Equally finding peers to support you who are positive and proactive and are supporting their children to be.

Supporting an Autistic child or young person

It can be difficult to know where to start in helping to support your Autistic child or young person to cope with the many the challenges they may be facing.

You have little control over the outside world, but the key factor is equipping them to understand themselves and their place in the world.  Above all, like any parent you want them to feel safe, be authentic, be autonomous and to be supported to utilise their many strengths and the key factor in that for them is understanding their Autistic identity. Being their advocate when they cannot advocate for themselves and learning right alongside them.  This really is a time to follow their lead and do what your instincts tell you as best you can.

It’s also important to consider the home and other environments in terms of sensory overload. Help them to learn what hurts them and what doesn’t, what re-energises them and what drains their batteries. These things can change over time and contextually so be prepared that something may be a trigger on one occasion and not another. Understanding also that sensory dysregulation goes hand in hand with emotional dysregulation and that the two work together in an overwhelm cycle and can lead your Autistic person to meltdown.

Your child may also require additional support in order to discover their optimum way of communicating and understanding their sensory selves. This may require the services of Speech and Language Therapy and Integrative Occupational Therapy. It’s important to work closely with these professionals, and to establish which strategies are most appropriate to enable your child to be autonomous and authentic.

 What to say to schools and colleges

The mainstream educational environment is often very challenging for autistic children and young people.

They may experience fear and anxiety within this environment, and the surroundings may cause sensory overload. Their communication and learning needs may not be met unless you are able to advocate strongly with school and school is on board to change how they do things. It’s fundamental for schools and colleges to be aware of the fear and anxiety that may surround an autistic learner. It’s also incredibly fundamental for a school to understand and be able to recognise the narratives around Autistic Masking and the Burnout it can trigger periodically. Schools are often implicit in the reasons Autistic Masking exists but unfortunately do not always recognise this.  The best schools are the ones that foster good relationships with parents and are willing to work as a team with them and the Autistic Learner and following the lead of the Autistic learner.

It is important for schools and colleges to be aware of the differences in communication, social interaction and behaviour expressed by Autistic children and young people and to support them to feel validated in the educational environment. Autistic children and young people may struggle to communicate within the classroom, and therefore it’s important that the teacher makes sure the child has heard and understood the instructions given, but also that the child is heard and has a voice withing the classroom. Group work may be particularly challenging, and peers will need to be supported to enable the Autistic child or young person to feel validated and that they can safely be themselves without fear of reprisal. The use of alternative communication systems may also be needed to help autistic children and young people’s communication be validated and help them be better understood and it’s vital that all staff are trained in how to use these systems effectively.

Supporting siblings to understand

siblings need to know that their Autistic family member is disabled and needs extra support and that this does not mean they are a favourite. Carving out the opportunity to spend quality one-to-one time with a sibling and helping them understand their sibling’s needs can help siblings understand better, feel less resentful of attention that comes their ways less and deal with their own emotions.  The promotion of open communication within the family where everyone feels heard and validated and where their needs are attempted to be met means a family that will work together as a unit better.

 What to say to extended family

There is still a lot of misinformation about autism, and therefore extended family members may have many questions.

Family members may struggle to understand and need the time and patience to learn to do so.  You could provide them with information which has helped you, or signpost them to training courses and resources.  It’s important that they get the opportunity to comprehend this complex narrative that you have.  Family members can often unwittingly cause problems by trying to be ‘helpful’, this can be incredibly frustrating and it can take a long time for them to ‘get it’.  Unfortunately, some never will, so it may be that you have to set boundaries in order to protect yourself and  your child or young person.

Additional support for parents and carers

Additional resources for parents and carers