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Understanding anxiety in autistic children and teenagers

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Understanding Anxiety in Autistic Children and Teenagers
The world for autistic children and teenagers can often feel like a very overwhelming place; it is therefore little surprise that autistic children experience high levels of anxiety which can have a disabling impact throughout their lives.

Todd, who owns Pontefract Squash & Leisure Club in West Yorkshire, first lost his 85-year-old mother in April of 2020. Twenty-four days later his father died due to Covid complications. They had been married for over 60 years.

To compound matters, within a week of his parents dying, he then lost his aunts in the space of a fortnight. “It has been impossible and horrendous regarding the Covid restrictions on funerals,” he says.

Todd, a well-known business figure in the market town, was present at the double funeral for his parents. In all, he has been to eight funerals during lockdowns in the UK. He says that the rule of six limit at the crematorium meant many people in the community were standing outside for his own parents’ funeral, with the speakers not allowed to be turned on. “We couldn’t really say our goodbyes,” he adds.

No-one could have imagined the isolation in which millions of people in the UK would be expected to cope with grief and bereavement through 2020 and into 2021. Even for those without recent losses, lockdown created a vacuum in which grief – new or unresolved – rose to the surface.

To put this into perspective, the six digit numbers quoted in daily press briefings, and the red line that climbed ever upwards to the right in daily graphs equate to the most excess deaths in the UK since World War Two.

Grief is deeply personal and in the isolation of lockdown it has become deeply lonely as traditions and rituals for mourning have disappeared.

We talk with two grief and bereavement specialists at ProblemShared, Joyce Howitt and Susan Cappaert, to draw on their experience and take a look at what has emerged in related areas of research and ways to move forward.

Lost Grief Rituals

In a national survey of people bereaved in 2020, 94% said they had had to restrict funeral arrangements. Simply put, Covid-19 has changed the way we have mourned and the restrictions of the pandemic have made bereavement ever more stressful and painful.

Susan Cappaert said that this had been heartbreaking for her clients: “It has caused a lot of anger, frustration and confusion." Like so much else in this pandemic, an experience that has been so restricted that it feels watered down or token in gesture cancels out some of the benefit of being able to participate at all.

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What Makes This So Much Harder To Bear?

In some ways, the answer to this question seems obvious to our collective understanding of what has unfolded over 2020 and 2021.

The particular mix of suffering that has unfolded means that the grief which follows is likely to be complicated at a level that may be hard to shift.

Factors that complicate grief in this pandemic are myriad and have trauma, shock, a void of control or self-directed choices, and a lack of resolution in the mix.

As Susan Cappaert says, “For many bereaved, there is constant worry about someone dying alone and the only connection they had to their loved one was a daily phone call to the hospital for an update."

As Joyce Howitt says,

"Even the most basic action - touch - has been lost."

Contact with those who are ill in hospital has not been possible; it is impersonal - often reduced to as little as the sharing by healthcare workers of a patient's stats and numbers - the "obs" of interval monitoring in a hospital ward (the observations of a patient's vital signs), and as reiterated in various research, this is partly because of the time pressures on hospital staff and care providers, partly because of the pressure on resources, but also because there is little other means of contact available to gauge matters given the physical impediments of PPE gear and ventilators. This means that there has been no opportunity for those bereaved to bear witness themselves and prepare for the inevitable, nor has there been an opportunity to give comfort to the loved one or resolve any unresolved aspects to that relationship.

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The associations the bereaved may have with their loved one's physical struggle with Covid-19 can also play a role in exacerbating grief and other responses - for example the worries about a patient not breathing peacefully or dying while intubated.

"Bereavement care fell to a wide range of staff members, including some with limited experience or training in supporting bereaved people who had to rapidly develop the required communication skills," a survey of bereavement care found this year.

And then there is the added weight of conscience in accepting that there are limitations for those working the back-breaking hours in hospitals to deliver care in order to save lives in the face of what were mounting death tolls. It is a situation in which it can be hard to find an appropriate target or place to direct the anger, confusion, and lack of control that follows bereavement in these circumstances since everyone is trying their hardest.

Setting this against the backdrop of millions of people isolating at home for so much of last year and into this year, with limited social contact and restricted physical engagement with the outside world, it is a very particular context that gives rise to such intense grief.

Grief Can Be Different The World Over And That World Is Right Next Door

Although first-hand accounts of bereavement and the restrictions to our grief rituals have been played out in the media on an almost daily basis, the impact of varying cultural & religious sensitivities to bereavement is less talked about. There can be different cultural & religious emphases with regard to how to honour the departed, the number of mourners, the duration of the proper mourning period, traditions in the displays of grief and outpouring of emotion, and the rituals of the attendant physical bodily rites. Lockdown has been ever more compromising of the mourners' perceptions and hopes for the departed's journey onwards.

Another aspect to the cultural context is that the community in the U.K. which has suffered most disproportionately in terms of rate of bereavement has been the BAME communities. That these communities' share of loss is higher is in part due to the close-knit settings of extended family life in such communities which underlines the further fracturing of this community.

These communities are also broadly more likely to be involved in frontline "key worker" roles which cannot be done from home, especially with respect to healthcare. As reported in a study last year "One country, two crises", BAME groups number 44% of medical staff and 20% of nursing staff and it is these jobs where risk of infection was greatest. The first 11 doctors to die in the UK were from BAME communities.

A wider number of kin can also be affected by bereavement, due to the larger family size of BAME communities, as attested to by a study out of the United States. Those undertaking the national UK study on bereavement have also pointed out that one of their primary goals is to understand better bereavement across all population groups in order to provide more equitable bereavement support to those groups.

Understanding Different Types Of Grief As A Roadmap For Healing

The human ripple effect of bereavement means that there were at a minimum close to 4 million people bereaved in the UK on the anniversary of the first lockdown earlier this year in March, regardless of cause. The same bereavement study out of the United States that looked at differentiated weighting for different population groups put the multiplier for bereaved as high as 8 - 9 kin for every death based on factors specific to the ages of those who have died during the pandemic, being on average older and leaving behind several generations of family. This is well north of the usual bereavement multiplier of 5 kin, putting the number of bereaved well in excess of 4 million.

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“Grief is an extremely powerful emotion; it is painful and exhausting in ‘normal times’, let alone this last year", says Susan Cappaert.

There are various psychological models of grief and schools of thought about processes that someone goes through in order to heal. Even usual uncomplicated grief cannot be easily boxed into a tick box of symptoms or experience. There is "wide diversity in the timing, expression and intensity across population groups and within families".

One of the biggest barriers for neurodivergent people entering the workforce is non-inclusive interviews.Interviews typically place an emphasis on conversational ability, social skills and body language. neurodivergent candidates often show differences in these areas and so reasonable adjustments need to be considered to give them a fair chance so reasonable adjustments need to be considered to give them a fair chance.

Organisations can get ahead of the curve by adopting an inclusive approach to neurodiversity from the beginning. Here are some tips to help your company to conduct more inclusive interviews to support the neurodiverse workforce.

Before the interview

To help candidates prepare and set themselves up for success before the interview starts, here are some things to consider:

  • Provide clear directions to the interview, including photographs of streets and transport stations.
  • Provide clear instructions on how to get into the building and where they need to go when they arrive.
  • Share any interview questions in advance and allow them to bring reminder notes.
  • Allow adequate time for replies during the interview.
  • Let them know the name and job role of anyone they’ll be meeting during the interview beforehand.
  • Provide a timetable for what will happen in the interview. For example, ‘we’ll spend the first ten minutes talking about you, then spend ten minutes talking about your technical experience’.
  • If possible, provide access to a quiet space where your candidate can avoid auditory, visual, or social stimulation before and after the interview if required.
  • Ask your candidate if they’d like to be accompanied by someone they know during the interview.
  • Ask about communication preferences. Some people might prefer to support their spoken language with the option to write for example.

The right environment

Neurodivergent people often experience sensory issues. They may be distracted by noise, lights, and the surrounding environment, so if you’re hosting an in-person interview, it may be beneficial to ensure the interview room is as distraction-free as possible.

Here are some suggestions for getting the setting right:

  • Provide a notebook in case your candidate wants to make notes. This can help them organise their thoughts when giving detailed answers.
  • Invite them to move around during the interview, or factor in short breaks, if your candidate finds it difficult to sit still for periods of time.
  • Don’t expect eye contact. Neurodivergent individuals may find this uncomfortable, or it may impact their concentration.
  • If possible, provide fidget toys or stress balls to reassure your candidate by making them feel more comfortable and to reassure them that you are neuro-inclusive company.

Fair Questions

Neurodivergent candidates may struggle with open-ended and hypothetical questions, and with switching between formal and informal tones. It may also take them longer to process questions. Quick thinkers can talk rapidly and get distracted, so they may stray off topic.  

Here are some suggestions when preparing interview questions for neurodivergent candidates:

  • Be specific with your questions. For example, ‘what information governance processes did you use in your last job?’ may elicit a better response than, ‘what would you do to look after people’s data?’
  • Consider asking focused questions rather than generalised ones. For example, ask for specific examples instead of saying ‘can you give more detail?’  
  • Be prepared to accept literal responses. For example, if you ask, ‘how did you approach your last role?’ you may get a literal answer like, ‘by bus and then I walked.’
  • Try to avoid long questions that contain multiple clauses. Your candidate may have difficulty focusing and waiting for the question to be finished, especially if they struggle with processing information.
  • Multiple choice and psychometric tests can be discriminatory. It’s much more beneficial to provide an alternative style of assessment.
  • For written tasks at interview, 25% extra time is a reasonable accommodation to allow for processing and answering questions.
  • Be prepared to prompt your candidate or repeat your question if you need more information, and let them know when you have enough information.
  • Ask the candidate if they would like any reasonable adjustments for their interview.  

Considering neurodivergent jobseekers is a shift away from old-fashioned thinking, where the interview process was mainly designed with ‘neurotypical’ candidates in mind. It’s important to understand bias and be aware that we can all function in different ways, and that performance in an interview does not necessarily reflect on how a person will perform in the role.

To make sure you retain your neurodivergent talent it will be necessary to apply these principles throughout the onboarding and retainment process too. Make sure your workplace is neuro-inclusive by offering continued support from the beginning of their contracted time with you, as well as beforehand during the interview process. This should include additional support for the individual through any required assistive technology, workplace adjustments, and by making sure that all your staff are aware of and understandneurodiversity and have inclusive attitudes from the start.

Sensory Sensitivities

Autistic children may have varying degrees of sensory sensitivities to their environment especially when it comes to structured environments such as school or college. Loud noises, unpleasant smells and bright lights can be over whelming for them, often leading to exhaustion which can trigger further anxious feelings about their performance in the classroom.

Changes in routine

There are multiple transitions in a child’s day that could bring on anxiety, examples can include changing out of pyjamas into school uniform, changing classrooms frequently throughout the day and transitioning from work to leisure mode at break times and home-time.

Socialising

The pressures of fitting-in and being socially accepted can be challenging for a young autistic individual. Lack of structure in the playground and pressure to join in with small talk can make breaktimes the most dreaded part of the day.    

Autistic children are more vulnerable to bullying, often learning to mask at an early age in order to appear ‘normal’. This can cause extreme anxiety for anticipation of bullying and can in turn take its toll on mental health and well-being.  

Self esteem

Feelings of failure about not reaching expected norms and potential can have a very detrimental effect on an autistic child’s self-esteem and exasperate performance anxiety. Being told to ‘concentrate’, ‘try harder’ and ‘overcome challenges’, that are part of a child’s autistic identity can be a burden and effect feelings of self-worth.  

What is Anxiety?

Anxiety is a natural part of life and something that everyone experiences at some stage.  

Characterised by a feeling of mild or severe distress, anxiety is the emotional response to a detected of perceived danger. This creates an innate drive to enter protective mode, otherwise known as the ‘fight-or-flight’ or ‘freeze’ mode.

How Do Autistic Children Experience Anxiety?

Autistic children feel many of the same worries and fears as other children. Although the way they display their anxiety can look a lot like common characteristics of autism – such as stimming, obsessive, ritualistic and repetitive behaviour, and resistance to changes in routine and environment.

Autistic children often worry or feel stressed about things that are less worrying for typically developing children, like disruptions in their routine or unfamiliar social situations.  

They can also have trouble recognising their own anxious thoughts and feelings and can’t always tell you that they’re feeling anxious. Instead, you might notice an increase in changes in behaviour.

What are the Main Overwhelming Factors that Result in Anxiety for Children and Young People in Educational Settings?

Sensory Sensitivities

Autistic children may have varying degrees of sensory sensitivities to their environment especially when it comes to structured environments such as school or college. Loud noises, unpleasant smells and bright lights can be over whelming for them, often leading to exhaustion which can trigger further anxious feelings about their performance in the classroom.

Changes in routine

There are multiple transitions in a child’s day that could bring on anxiety, examples can include changing out of pyjamas into school uniform, changing classrooms frequently throughout the day and transitioning from work to leisure mode at break times and home-time.

Socialising

The pressures of fitting-in and being socially accepted can be challenging for a young autistic individual. Lack of structure in the playground and pressure to join in with small talk can make breaktimes the most dreaded part of the day.    

Autistic children are more vulnerable to bullying, often learning to mask at an early age in order to appear ‘normal’. This can cause extreme anxiety for anticipation of bullying and can in turn take its toll on mental health and well-being.  

Self esteem

Feelings of failure about not reaching expected norms and potential can have a very detrimental effect on an autistic child’s self-esteem and exasperate performance anxiety. Being told to ‘concentrate’, ‘try harder’ and ‘overcome challenges’, that are part of a child’s autistic identity can be a burden and effect feelings of self-worth.  

How Does Anxiety Manifest in Autistic Children and Teenagers?

Understanding and recognising how anxiety presents in autistic children and teenagers is a great step to identifying anxiety triggers in advance and in order to give support. Anxiety can be communicated through behaviour, such as:

  • Avoidance of tasks.  
  • School and/or activity refusal – this may come in the form of verbal refusal, refusing to get ready, excuses such as feeling ill, or becoming distressed when approaching the school gate.  
  • The need to have control - of routines, the environment and people around them. Higher levels of control can help the person feel a greater sense of certainty and predictability.
  • Obsessive, repetitive or intrusive thoughts also known as obsessive compulsive disorder (OCD).  
  • Repetitive self-stimulatory behaviour - hand movements, vocal noises, ticks, pacing or jumping around are important self-regulatory activities that can help soothe anxiety. It is important to be accepting of this behaviour even if it looks different to the norm.
  • Meltdowns – these can be a result of the amount of energy used throughout the day at school in order to appear normal and to hide any anxious feelings. These meltdowns typically occur on the return home and can be likened to a bottle of an extremely fizzy drink, which, once opened explodes.  
  • Shutdowns - when children turn their anxious energy inwards. The child may become withdrawn, passive, quiet or struggle to make decisions.  
  • Aggressive behaviour - autistic children may express their anxiety and fear through acting out physically. Aggressive behaviour becomes common when a child is in survival mode, doing their utmost to escape a scary trigger.  
  • Self-harming behaviour - self-injury can take many forms, such as hitting, scratching, biting or cutting.
  • Difficulty with concentration and a lack of readiness to learn new skills - when children don’t feel safe and secure it is hard for them to maintain focus on an activity.
  • Bedtime refusal - heightened stress hormones impede sleep hormones. In addition, stressful events can affect sleep by increasing the number of nightmares and night terrors.  
  • Separation anxiety - many autistic children form deep attachments to a caregiver, the separation from whom can often cause distress. In a school or nursery setting a child may feel less engaged than others due to being distracted by worrying about when their attachment figure will return.  
  • Eating disorders - especially in girls, anxiety can trigger eating issues often driven by a need for control. There are strong links between autism and anorexia. 

Recognising and Understanding Behaviour as Communication

It is important to recognise that self-regulatory behaviours are an autistic child’s way of trying to communicate, and that it is important to not reprimand your child for what may be perceived as ‘bad behaviour’.  

Behaviour is a form of communication and recognising and understanding your child’s unique way of communicating can help you to foresee and avoid difficult situations and triggers, and to enable your child to have an easier time in the classroom.

You can work with us and your child’s teachers to put in place any required reasonable adjustments to make sure their school day go as smoothy as possible. Our dedicated team can offer advice and support on how to communicate with schools and local authorities, and to help alleviate your child’s anxiety in the classroom.