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.

When executive functioning is compromised, there can be challenges in planning, prioritisation, organisation, impulse control and staying on task.

What are Executive Function Challenges?

Everybody is different in their executive functioning strengths and challenges, and neurodivergent individuals can have very varied ‘spiky profiles’  

People may have challenges in relation to the following areas of executive functioning:

Initiation:

• Getting going - especially when initiating uninteresting tasks. This is referred to as inertia
• Procrastination - getting past thinking about the task to doing the task

• Poor time management - not being able to foresee how long a task will take  
• Thinking you need to do something but not remembering what it is.

Working memory:

• Like a computer scratch disk - allows you to hold information in your mind while making links.
• Challenges with short term memory - remembering what has just been said or remembering a sequence
• Processing different streams of information - like listening to someone while remembering you need to remember your keys, for example.

Emotional and impulse control:

• Not having internal prompts to remind you what task you need to do next, in order of importance  
• Getting frustrated at yourself for forgetting to do important things, especially when others see you as lazy or incompetent  

• Difficulties regulating alertness to complete hard tasks when the interesting parts have been done.
• Finding it hard to shut off your busy brain which can affect sleep patterns
• Experiencing RSD (Rejection Sensitive Dysphoria) which can be extremely debilitating  
• Being impulsive and not considering the context  
• Difficulty adjusting and graduating your pace, or changing gear. This can lead to an all or nothingmindset.

Focusing:

• Challenges sustaining focus
• Difficulties shifting from one task or topic to another  
• Slower gaining information and losing focus easily

Hindsight and foresight:

• Harder learning from past experiences and then repeating the same actions again and again

• Difficulties with predicting future challenges

Time awareness:

This has been called “time blindness” by Psychiatrist Russell Barkley

• Remembering to put appointments into your diary
• Allocating the appropriate time to a task
• Splitting a task into parts and recognizing how long each will take

Developing strategies to make everyday life easier

The good news is that once we recognise our executive function challenges, we can develop strategies that reduce the negative impact to help make everyday life easier.  

You may already have some personal strategies in place. Here are some that might be helpful if you haven’t already considered them:

Check your barometer  

Throughout the day check in with yourself. How are you coping? Do you need to take time out? Do you need a drink or something to eat? When we are tired, hungry or overloaded it can make it harder to manage new information or juggle multiple tasks.

Minimize clutter  

Make sure your workspace isn’t too distracting. Separate similar items into groups.  Use colour coding and visual prompts to help organise information on reminder charts or visual diaries.

Visualise and prioritise tasks

Use a wall-planner that visually highlights appointments, deadlines and daily tasks. Use colour coding to prioritise tasks. Create a list of actions at the beginning and end of each day and mark priorities. Carryover lists to the following day.

Take regular breaks

When in hyperfocus mode it can be difficult to remember to take a break which can lead to burnout, and if atask is uninteresting, it can be difficult to complete. Try the Pomodoro method to improve concentration. Work for 10 minutes then take a  5-minute break and increase the time if appropriate.  

Break down overwhelming tasks

If a task feels too big to handle break it down into small parts using the Kan Ban Method where you can break down large tasks visually into small parts, on post-its. Remember to congratulate yourself as you move forward, however small it is.

Make it more interesting

Try to automate ‘boring’ tasks and choose some pleasure stuff after more tedious tasks.

Increase dopamine levels

Choose some music that helps you to focus. Take regular breaks, you could even try dancing around if you feel stuck and try again.

Reminders and alarms

Use timers and set alarms to remind yourself when your deadlines are. Put all tasks and appointments into an electronic diary as soon as you know about them. Set reminders before the deadlines rather than at the deadline itself.

See the bigger picture

Try and gain an understanding of how all the different aspects of work link together in a  project or assignment. If you work as part of a team understand how your work links with others.

Supportive software

There are various types of software and apps that can help with planning, organisation and processing.

For example, Mind-mapping software, such as Inspiration and Mind Genius may be useful to map out ideas and workflow effectively or using text-to-speech and speech-to-text software could help speed up the processing of large documents.

Setting various reminders and alarms on your phone can be useful too. For things such as appointments, it can work well to set a reminder for the day before, then an hour before, giving you time to plan if necessary.

Be kind to yourself

It is not surprising that these differences can often impact on other factors such as self-esteem, energy levels and base level stress. Gaining an understanding of ourselves and the reasons why we find some things more difficult can really help in the management of this.  

Some days will be harder, or you will feel less motivated, and that’s ok. Practice your strategies and remember to always be kind to yourself and find what works for you.  

We are the only healthcare provider to provide this unique ongoing care. It includes psychoeducation workshops led by our clinical team, where you can learn more about your diagnosis, and where appropriate, the prescribing and titration of ADHD medication.  

This is all in line with our standards of excellence. By providing expert guidance, educational resources, and emotional support, we ensure that our clients can build on their strengths and access tailored recommendations about how they can make positive changes to their lives.

Post-diagnostic support with ProblemShared

One of the primary goals of our ongoing support at ProblemShared is to equip individuals and their families with knowledge about how neurodevelopmental conditions such as ADHD and autism can affect their experience of the world around them.

Psychoeducation workshops

Our psychoeducation workshops are facilitated by our expert post-diagnostic intervention (PDI) practitioners. They are virtual group sessions and combine the offering of information with opportunities to learn from and support each other. While participation is encouraged, it's your choice as to how much or little you would like to contribute. Our practitioners provide a safe, structured environment to allow opportunities for discussion, reflection and collaboration.

Over 4 sessions, we aim to help you understand your diagnosis and how it affects you, as well as how you can overcome any challenges you might face and build on your strengths. You will have the opportunity to listen to the lived experiences of others with the same diagnosis and share your own thoughts and feelings about neurodiversity.

ADHD medication: prescribing and titration

If you receive an ADHD diagnosis, our specialist ADHD nurse practitioners can prescribe medication where appropriate, which can then be dispensed by your local pharmacy. Note that this will only be possible if your GP has pre-agreed to accept shared care at the point of your referral (there is a section on shared care later in this article). We will also work with you to alter the dosage of your medications based on how you respond to the medication – a process known as titration.

Shared care

Once your titration period is stable, we will move you into a shared care arrangement with your NHS GP. They will take on the role of prescribing and monitoring your medications, and provide ongoing support for any challenges you might face as a result of your ADHD.

After receiving a diagnosis, we offer guidance about working directly with your GP to ensure they continue to prescribe your medication. If you have been diagnosed by one of our clinicians, they can begin to prescribe medication, support you through frequent reviews, and liaise with your primary care team to ensure joined up expert care.

Need more information?

If you have any questions about Right to Choose, our post-diagnostic care, the referral or assessment processes in general, you can head to the support resources section of our homepage, or explore our FAQs.

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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.

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.

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.

“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".

Prolonged Grief Disorder

However, the particular environment of 2020 and 2021 with its associated shocks and trauma makes for a different type of grief to the norm. Joyce Howitt says that although Prolonged Grief Disorder (PGD) (previously known as Complicated Grief) was already more common than most people might expect, it is likely to predominate now. Dozens of research papers over the last year have certainly anticipated a "surge" in this as a result of the pandemic" (Boelen et al., 2020; Eisma et al., 2020; Gesi et al. 2020; Goveas & Shear, 2020; Johns et al., 2020; Kokou-Kpolou et al., 2020; Masiero et al., 2020; Mortazavi et al., 2020; Wallace et al., 2020; Zhai & Du, 2020)

PGD is a form of grief that is distinct from the normal grieving process. Without treatment, the condition can persist indefinitely. According to the ICD, PGD persists beyond six months after bereavement or beyond the social, cultural or religious norms of grieving that might fit that person's profile. It involves pervasive thoughts of the departed, is accompanied by intense emotional pain and causes significant impairment in personal, family, social, occupational or educational settings, that may have complicating factors & trauma at its core but which is distinct from PTSD. It may also involve heightened emotions as compared with the more muted emotions of depression.

It was recently included as a diagnosis in the World Health Organization International Classification of Diseases, 11th edition (ICD-11) and is now proposed for inclusion in the USA's Diagnostic and Statistical Manual of Mental Disorder, 5th edition (DSM-5); these are the two main clinical catalogues of mental disorders. The descriptors for diagnosis in the ICD-11 have been much simplified and this implies a more flexible and sensitive approach to diagnosing this debilitating form of grief.

Rise Of Wider Mental Health Conditions

There is also broader grief over other losses or "endings" in this pandemic. Life stressors abound - an end to social interaction as we knew it; financial stresses of redundancy, furlough or failed businesses; social and educational disruption for children and students and an end to school as we knew it with the new multitasking required by home schooling; disruption in living arrangements during relocations to form bubbles or where one member of a family needs to shield from the rest within the same house; strictest isolation for some individuals. This has triggered the parallel widespread rise of mental health conditions such as PTSD, anxiety, depression, loneliness, and anger. This has been compounded by the constant exposure to grim news. And compromised sleep and lack of proper exercise over the last year and a half have meant there has been no relief or other outlet for recharge.

These factors only serve to compound grief and also negatively impact the network of family and friends that might ordinarily be a source of support to the bereaved.

Depression, anxiety, and trauma-related disorders can arise with bereavement too even without the presence of PGD.

Unresolved Or Buried Grief

There is also unresolved grief which can become buried. "This can manifest itself later as physical or emotional illness" says Joyce Howitt. "Many of us have spent a lot of time on our own, with less to do than usual,” she adds, “and this can be the time that negative thoughts and memories including unresolved grief come to the fore.”

The Accelerating Factor

That grief can divide as often as it unites is something that at times is only understood by learning it the hard way through first-hand experience of it.

And with families divided physically and isolating in separate configurations, there has been the dissonant combination of remoteness that comes with physical distance on the one hand, and the hothouse environment on the other of isolating alone or with the smaller immediate family. This can risk accelerating division and isolation.

Disenfranchised Grief

Disenfranchised grief taps into another hurdle facing the bereaved in this pandemic - the risk of thinking that one's grief is dwarfed by the collective grief - "because during lockdown, people are conscious of having to get on with things. Well, I say get on with things, in fact you can't do all that much. And there is the tendency to think that others have it worse than you", as Joyce Howitt says.

For someone whose loved one died from a cause that is not Covid-19, there can be a misguided perception on the part of the bereaved or other people that this other cause of death somehow sidelines their grief - that they are excluded from the community of those who lost someone to Covid-19. Such disenfranchisement was reinforced in certain instances in the delivery of bereavement support - "In some cases, funding was allocated only for those who had been bereaved by COVID-19, which ‘could create inequality of service provision’."

Net Effect

This multiplication of stressors makes for a very particular grief landscape. The pandemic and the grief that it generates will continue to be a source of stress even when life finally does normalise.

M. Katherine Shear, whose pioneering research has contributed to the recognition of grief as a disorder in its own right, recently noted the difficulties of this pandemic: "Though we are often heartened by human resilience in response to death and other hardships, for some, the burden of this pandemic will be too much."

As Stroebe and Schut, jointly responsible for one of the most widely accepted bereavement models currently used in therapy, the Dual Coping Model, state in their most recent research on the impact of the pandemic: "Finding a place for the deceased in ongoing life, relinquishing the old ties and moving on may not be tasks that can yet be dealt with".

So even if we were permitted to observe our usual grief rituals or adopt more usual coping strategies, their value may be compromised in any case because of the complexity here. They would not be without value, of course, but having access to our usual rituals would not necessarily stave off the tidal effects of grief in this pandemic.

Recognising these factors and their impact on shaping grief is key. It allows us some space to be gentle on ourselves, our families and our communities as we start to normalise after July 19 2021, and it lays the foundations for considering how to move forward.

In Part 2 we talk about how to cope with grief through different lenses - what can be done day to day on a personal level, what can be done on a therapy footing, and more broadly as a society. As the tides of this pandemic recede a little and we make our way out, we must also shore up our ways to grieve and heal.