Disability Inclusion in the Workplace

On 29 October, I joined IGPP for the Disability Inclusion in the Workplace event. According to Dr Ruth Owen OBE, CEO of Leonard Cheshire, disabled people are the fastest growing minority in the UK. Up to one fifth of adults will experience disability at some point in their life, leading to additional stress on their working lives.

Brian Lutchmiah, Higher Education Partnerships and Inclusion Lead, Diversity and Ability added that one quarter of adults will experience mental health issues in their life time. The costs of living with a disability or mental health condition can be significant, as can the time needed for attending appointments or managing chronic conditions. One NHS Trust provides staff with up to 10 additional days leave per year to manage these challenges. Complex work arrangements might be needed to support appointments, hospital stays, or Assisted Living and all of these can affect the continuum of work or education. Many students in particular are not aware of the financial support available, such as Access to work and the Disabled Students Allowance.

“It’s a challenge on top of a challenge to navigate the labyrinth,” explained Brian.

According to Brian, the benefits of a employers taking a proactive approach to inclusion include greater acceptance of diversity, normalisation of difference, increased confidence (for both employers and employees) and better wellbeing. Employers may also see increased productivity, lower absenteeism and higher retention levels.

“For me, it is about promoting a sense of authentic belonging,” summarised Brian.

Lucy Reynolds, Founder and Director of We Are All Disabled described how the pandemic lockdowns were a great leveller. “Suddenly everyone was working from home and not able to do the things they are used to,” she reminded us.

In the Lancashire police service, Rozila Kana described their experiences with adjusting sick leave policies. “One size fits all is not fit for purpose,” she advised. “You need to take time to put adjustments in place and make sure your communications strategy is right. There should be no ‘banter’ on this issue and flexible working is increasingly accepted.”

For Rozila, there is now a better awareness of conditions that might lead to disability and the wider impact this has on families. “It is the job of managers to do the learning on this,” she urged. “You need buy in from the top table to give equality and diversity initiatives credibility. This is not an add on, it is a business imperative.”

Esi Hardy is the Managing Director of Celebrating Disability and supports organisations to identify their pain points about disability inclusion and work towards addressing them.

“Medically, parents are told from day one that a child with a disability is something to be sorry about,” she said. “When we communicate about disability in the workplace, we need to think about what people will think, feel or do as a result. We need to be aware of the influence of tone of voice when we speak about disability.”

Typical pain points for employers are disabled people not disclosing their requirements or reasonable adjustments and attracting more disabled people to work for their organisation. Organisations want to know why managers do not use the processes they have in place to support disabled colleagues or job applicants. Often, employers know that they need to change, but are unsure how to do this.

To improve line managers’ knowledge about disability, employers often offer training. To make this effective, they should:

• Explain the relevance for the training i.e. to create an inclusive culture
• Create psychological safety
• Develop and enable confidence in speaking about disability
• Provide opportunities to practice conversations about disability

Eli’s recommendations for making improvements in the workplace to disability inclusion are:

• Make no assumptions to make sure you are open to understanding what others think and feel
• Give feedback on any surveys you carry out
• Co produce strategies e.g. you said x, we did y
• Ask others about how to improve and explain why you are asking e.g. we want to develop an inclusive culture because…

There could be two main reasons why staff do not disclose a disability to their employer. Firstly, they may not identify as disabled (although they may have an impairment). Secondly, they may be afraid of repercussions. Employers should articulate why they want to know this information and what will happen as a result, for example to improve accessibility and the inclusive culture of the organisation.

When recruiting, make sure that you articulate and demonstrate the inclusive values that you hold as an organisation, through the application process and during interviews. You can demonstrate your organisational values by role modelling inclusive behaviour towards all candidates, for example offering breaks during interviews and asking if people are comfortable. This helps to develop an environment of trust that should improve opportunities for dialogue and collaboration with new and existing disabled staff.

As described by many of the speakers, in order to provide the cohesive and inclusive societies of the future, leaders need to influence and collectively empower society today.

Autism in girls and women

At the National Autism Show in June 2021 there was a particular focus on understanding and recognising autism in women and girls. Historically, autism studies investigated behaviours typically seen in men and boys, which then underpinned modern day diagnostic criteria. Initially, clinicians thought that ten times as many males were affected by autism compared to females. However, more recent studies estimate that the ratio of boys to girls with autism might be closer to 3 to 1, although the true figure is still unknown. Jennifer Cook, Siena Castellon and Dr Temple Grandin talk about their experiences on the autism spectrum.

Understanding autism in women and girls

Jennifer Cook is an autism consultant, international speaker and author of the “Asperkids” series. She spoke to us about why the diagnosis of women and girls might lag behind the true picture. “We are all on the human spectrum,” said Jennifer. “And yet everyone who recognises themselves in the autism characteristics I describe thinks they are the only one. I find there are scores of people who think they are the only one, when clearly that is not true.” Jennifer was relieved by receiving her own autism diagnosis at 35 as she had always felt ‘not quite’ in everything.

Jennifer finds that spectrum minds are more associative and less process-based. Just like boys with autism, girls have special interests, but these might not fit the more stereotypical diagnostic areas such as trains and cars. Girls’ special interests can often be more mainstream, such as anime, fashion and fiction – it is more the intense degree to which girls follow them that is associated with autism.

Autistic girls don’t act out, as boys often do, as much as they act in. They direct their anger at themselves not outwards to others, which can lead to self destructive behaviours such as eating disorders. Autistic girls might struggle with female friendships, as they are based on storytelling, might interrupt out of turn and don’t naturally take other people’s point of view. However, it is not true that autistic people do not have empathy. One type of empathy is stepping into some else’s perspective without having it explained, which people with autism may not do naturally. Once the other person’s perspective is pointed out, autistic people are very empathetic.

Jennifer finds that autistic girls tend to memorise information on social rules and sexual expectations to compensate for not picking these up instinctively. They often try incredibly hard to live up to people’s expectations, leading to issues with perfectionism. “For me, biographies are a favourite way to ‘learn how to be’. We have a missing sense of self because we don’t see ourselves very clearly,” explained Jennifer.

Perfectionism and a need for artificial control can lead to eating disorders and for Jennifer these are a big red flag. Autistic women and girls are more likely to manage anxiety, depression, trauma and low self-esteem through self harming behaviours such as cutting and skin picking.

Girls might also find less detectable ways to limit or avoid eye contact, such as looking at the space between people’s eyes. They might also engage in ‘show womanship’ instead of spontaneous or one-on-one interaction, for example by pursuing careers in teaching, narrative presentation, law or performance or have a hyperfocus on one best friendship that’s all or nothing. All of these behaviours can be strong indicators of autism in women and girls but are not fullly included in the diagnostic tools available to clinicians.

Education and autism

Lisa Camilleri and Naj d’Silva from Holmewood School spoke about providing specialist schooling for girls with autism. Initially, they had very few girls in their school compared to boys but have been gradually growing their female population. Setting up a Girls Club has helped girls to find their own identity within a school with a high percentage of boys.

While they have focused on supporting their female cohort, Lisa and Naj are also very aware that gender identity and sexuality are more varied among autistic people than in the general population. Some studies show that autism is more common among people who do not identify as their assigned sex than it is in the general population, perhaps 3 to 6 times as common (Warrier V et al 2020).

Lisa and Naj see first hand that autistic girls are diagnosed later in life and have greater emotional and mental health challenges. Autistic girls rely more on the intranet for friendships and have higher social anxiety. They struggle with how to respond to and resolve social conflict and find that close intense friendships can become all consuming. Sadly, there are also higher levels of assault for autistic girls making them highly vulnerable.

Autism and the impact on self esteem

Siena Castellon is author of The Spectrum Girl’s Survival Guide. Siena was diagnosed with autism at 12 and felt she was seen as eccentric, shy and aloof. She was sensitive to noise, touch and texture and felt rejected and ostracised by other children. Autism still seems to be perceived as a mostly male condition and for girls an autism diagnosis is seen as less valid or debilitating.

“If your autism is denied by others, it might be meant as a compliment,” said Siena, “but it really isn’t. The reality is that after diagnosis, for me nothing really changed. My diagnosis did not improve my life or stop the bullying.”

Autistic girls often ‘mask’, which means hiding their autistic traits – effectively changing their personality and behaviour to appear ‘normal’ and be socially accepted. This might include observing and copying others’ behaviour, assuming the personality of someone they like or preparing and memorising a script for conversations. Girls might also suppress their stimming behaviours or special interests.

Masking can be a double-edged sword. Girls develop a repertoire of personas for different situations that they copy from TV or film but might end up losing their own identity or sense of self, damaging their confidence and self-esteem.
“Having to hide your true personality in order to be liked makes you feel worthless and unworthy,” warned Siena. “Masking can be devastating to mental health. It takes a lot of effort, self-control and concentration and sometimes leads to burnout. Autism can feel like a constant state of panic and alertness.” Siena finds it helps to recharge her social battery by taking breaks from social contact and to use alone time to calm the senses.

Siena experiences alexithyma, a personality trait which causes difficulties with identifying feelings, describing what you are feeling and identifying the differences between emotions and the physical sensations that go with them. This is exacerbated by the greater expectation on girls to be emotionally in touch with their feelings. In fact, autistic girls might express their emotions clearly but in a non-typical way, without using the expected vocal or facial expressions. Siena also has difficulties with interoception, understanding whether she feels hungry or thirsty, tired or frustrated.

“We remain unseen and undiagnosed,” said Siena. “However, we are starting to come out of the shadows so that future autistic girls will be able to reach their potential.”

Dr Temple Grandin is a world renowned autistic author, speaker, activist and Professor at Colorado State University. She spoke with Helen Ellis, Equality, Diversity and Inclusion Co-ordinator at the National Autistic Society about her own life and highly successful career as an animal behaviourist and a person with autism.

According to the National Autistic Society, around 22% of autistic adults are in employment. Dr Grandin feels that children do not experience practical activities in the way they did when she was growing up, for example working with tools. For her, this is where great job opportunities can come from. Practical approaches led to her own highly successful career in animal behaviour.

In handling social interactions at work, Dr Grandin’s tip is to treat everything on social media and email as public. It is better to take people to one side to have difficult conversations to limit confrontation. For her, workplace manners etiquettes used to be clearer and are now more difficult navigate.

As many work roles are shifting to a dependence on online communication, it remains to be seen whether this will support or hinder people with autism. With employment figures so low, there is clearly a huge seam of untapped talent in the autism community. Due to late or missing diagnoses of women and girls, there are also many females remaining undiagnosed and unsupported in both education and employment. Understanding better how autism affects females compared to males and what this means for helping them to achieve their best is an area where there is still a long way to go – but with so much to be gained.

Autism: education, handling change and meltdowns

At the Autism Show in June 2021, we heard from speakers around the world about all matters relating to autism, from schools to work and from wellbeing to managing meltdowns. Students with autism can face significant challenges in education but also have the potential to shine, as described by Chris Bonnello. Handling change is not easy for anyone, but there are ways to ease transitions for autistic people according to Matthew Wicks. Sky high anxiety levels can lead to meltdowns, but Andrew Whitehouse has some advice on ways to cope.

Supporting students with autism in education

Chris Bonnello is a writer and autistic teacher of autistic students and spoke to us about his experiences as a late diagnosed educator with ‘mild’ autism.

“I have a maths degree but I promise I have a personality,” joked Chris. “‘Mildly autistic’ doesn’t mean mildly affected by autism either.”

For him, the root of many autistic children’s problems in school stems from anxiety. His recommendation is to get to know your student’s anxiety triggers and mitigate them as far as you can. Unhelpfully, approaches to supporting autistic students can be quite generalistic in a typical school and might be more focused on helping the rest of the class than the student.

“We get to be individuals with our own opinions too,” he reminded us. “What are the patterns in a student’s behaviour that can help identify the sources of their stress? Ask the student what helps them in school and what makes them struggle.”

Schools should have a consistent and positive dialogue with parents and emphasise that the ‘home team’ and ‘school team’ all want what is best for that student. It can be a misconception how much choice the child has about their behaviour in stressful situations – it could be very little. “My anxiety was done to me by other people,” asserted Chris. “Take our concerns and anxieties seriously. They are real to us. If children can trust you with the ‘silly’ stuff now they will trust you with the big stuff later.”

Autistic children are much more likely to be bullied by their peers. Their perspectives on being bullied are not skewed or unreliable. “And even if they were,” reminds Chris, “the anxiety it causes is the same.”

Diane Ravitch said: ‘Sometimes the most brilliant and intelligent kids do not shine in standardised tests because they do not have standardised minds.’ If people think differently, Chris believes we should let them do things differently, at their own pace and using their preferred methods in order to support them to succeed.

Chris recommends that schools help autistic children find their strengths and play to them, whether those lie in academic subjects, skills based subjects or anywhere else. Let students know they are allowed to have strengths, not just challenges. “Education is not just to help students ‘get by’ but to help them be the best person they can be,” explained Chris. “Give autistic people responsibility to give them a chance to thrive.”

“Don’t forget, we can be teachers too! It often never enters the discussion that the autistic person in the room might be the teacher,” highlighted Chris. “And if this helps just one person…. then I’ll be bitterly disappointed because I was hoping for more than that!”

Handling transitions

Matthew Wicks is consultant at Beyond Autism and spoke to us about handling life transitions, whether large or small. According to Matthew, the key is to plan ahead – be proactive, not reactive. Plans should also be individualised, as no strategy is one size fits all. Finally, adapt the environment as much as you can so you can set the individual up to succeed.

For big transitions, you can try person-centred plans, multi disciplinary teams, work coaches, transition visits and social stories. Social stories are also useful for medium level transitions, for example using symbols or pictures. Social skills training, including working in pairs can also help.

For daily transitions, for example in a school or home setting, you can use visual schedules such as now/next boards. Timers for activities may help to set up consistency and clear expectations, so that finish times can be anticipated. Counting down or giving warnings of the end of the activity may help some but can also cause anxiety in others.

Pay a thought to what will motivate the person to transition from one task to another. It is not helpful to schedule the least favourite activity straight after the favourite one, for example. Practice reinforcement by praising the behaviours you want to see and ignoring or downplaying those that are not helpful. Teach the individual to proactively communicate what they want themselves, such as requesting 5 minutes more on a favourite activity themselves. The key is to ensure that the individual feels more in control, both of themselves and also the environment.

Managing a meltdown

Andrew Whitehouse is a TEDx speaker and an autism advocate. He spoke to us about the loss of control sometimes experienced by autistic people in overwhelming situations, known as a ‘meltdown’.

“A meltdown is actually an uncontrollable anxiety attack,” advised Andrew. “It is an overwhelming experience with an equally overwhelming reaction. It is completely normal to be anxious but for some this is extreme.” It is important to stress that a meltdown in an autistic young person or adult is not ‘naughtiness’ or ‘challenging behaviour’. It is anxiety communication.

There are many causes of meltdowns and they can arrive seemingly out of the blue. A meltdown might also be the culmination of a slow build of social and emotional difficulties or confusion occurring over a long period of time. For example, meltdowns can be caused by rigid thinking, perhaps if a situation does not fit with expectations or what we would like to happen. It might also be difficult to point to a single trigger or cause.

“Is it better to prevent or cure meltdowns?” asked Andrew. “This question can be complex to answer.”

We might be able to identify triggers, such as sensory difficulties in busy places. We can try to avoid those triggering situations or locations, but they cannot always be avoided without missing out on life altogether. Some medical procedures that could trigger anxiety, such as vaccinations, should not be avoided for the benefit of the person’s broader health.

Preparation and role play can help with avoiding meltdowns, as well as acclimatising gradually to a challenging situation. “You need to decide, am I going to respond in this situation, or to react?” explained Andrew.

During a meltdown, there is no magic bullet to cope with the situation. Calming strategies such as using a weighted collar, vibrating cushions or pacing can help. Working with a key person that the individual trusts may improve things, but equally a change of face, bringing a new person into the situation, can be effective. Sometimes it is better and safer to step away and allow the person to calm themselves.

“If you observe a meltdown, just be there, be the friendly face,” said Andrew. “The most important thing is to be non- judgemental, of the person affected, or their carers.”

“As a parent or carer, when it comes to managing meltdowns it is important to pick your battles. Do what you know and don’t worry about being judged if you find yourself in a public environment,” advised Andrew.

In the aftermath of a meltdown, there are several options to try, all of which are best adapted to the individual. You might want to talk it through with them and ask how you can help better next time. Distraction methods such as humour or a special interest can help them return to an even keel and cope with low feelings after a meltdown.

“Sometimes it is better just to ignore what has happened and move on,” advised Andrew. I think we can all identify with that option!

Autism and wellbeing

At the Autism Show in June 2021, we heard from speakers around the world about all matters relating to autism, from education to employment and from wellbeing to managing meltdowns. As high proportions of people with autism can be vulnerable to anxiety and depression, maintaining your wellbeing can be a challenge.

Peter Vermuelen, autism consultant and lecturer asked whether happiness is a mission for autistic people – or is it mission impossible? “You need to redefine this as becoming autistically happy,” advised Peter. “Avoid forcing a person with autism into neurotypical concepts of happiness.”

Obviously, autistic people are in fact human and have the same Maslow’s hierarchy of needs as anyone (although you should probably also add wifi and a full battery to the physiological needs). Autistic people have a higher risk for mental health issues – anxiety, depression and trauma are almost co-morbid conditions. The lifetime prevalence for people with autism is 10-65% for anxiety (compared to 15-20% of neurotypical people) and 10-55% for depression (10-30% neurotypical). Autistic people also have a lower quality of life in general, with respect to living arrangements, work/education, social relationships and future perspectives, even when compared to other neurodiverse diagnosed people, such as those with ADHD. This quality of life deficit cuts across all IQ ranges – the ‘severity’ of autism makes no difference to mental health issues.

According to Deci and Ryan’s self-determination theory, we all want to be our own person, to have autonomy, competence and relatedness. For Peter, studies show that the happiest people are the most successful (not the other way round). Even in neurotypical people, negative feelings can cause an overfocus on detail and rigidity in thinking. Positive feelings increase cognitive functioning, flexibility and adaptability.

There are two aspects of happiness:

• A pleasant life e.g. joy, pleasure, absence of pain, safety, activities you like (volatile elements)
• A meaningful life e.g. purpose in life, personal growth, serving others, life satisfaction (more stable elements)

Peter believes that happiness is within reach of all autistic people but interventions should be autism friendly, individualised and involve the person themselves. Peter’s programme, the H.A.P.P.Y project involves increasing baseline happiness and also adding more of the hedonic, or transitory, pleasure. This includes:

• Accepting and loving yourself
• Good feeling toolbox, such as a box full of happy things to take to school or work
• Flow activities, those where we lose track of time and are distracted from our unhappiness. Special interests are a great fit here!
• Physical exercise, as exercise helps with emotional regulation
• Problem focused coping strategies. If we make life too easy, this creates learned helplessness. We need to build resilience in small steps to face problems
• Emotion focused coping strategies e.g. mindfulness, relaxation, visualisation in an autism friendly way
• Positive thinking. If you explore the ‘what ifs’ ahead of time, this can take away the unpredictability of what you are worried about
• Gratitude. Make other people happy by writing letters or paying compliments
• Kindness. Using your autistic strengths to help other people aids connectedness
• Personal projects. Goals give life meaning, so try learning something new (although don’t make happiness your goal)

Peter concluded with my favourite quote of the day: “You can’t stop the waves but you can learn to surf” (Jon Kabat-Zinn).

Sensory processing and autism

Your ability to interact with the world through your senses can have a huge impact on your physical and mental wellbeing. Lorraine Young, an autistic adult and Sensooli Community Manager, highlighted Sensory Processing Disorder (SPD), which is common in the autism community. SPD can lead someone to be under or over sensitive to stimulus such as sounds, smells and textures, causing either sensory seeking or sensory avoidant behaviours.

I always thought we had 5 senses, but apparently there are 8: sight, sound, smell, touch, hearing and also vestibular (balance), proprioception (knowing where are bodies are) and interoception (not knowing if we are hungry, thirsty or need the loo).

Overall, around 1 in 20 people have sensory issues, while 1 in 6 may be significantly affected. Not all people with autism have SPD however, and vice versa. Helpful sensory hacks can use sensory seeking to counteract avoidance, for example using a favourite smell, such as hand cream to counteract a disliked smell. The Tudors clearly had a point with their handy pomanders.

Lorraine recommended using Sensooli to work out your own sensory profile. Sensooli provides sensory products and also support networks. “Sensooli is not a diagnostic tool, it is a discovery tool,” advised Lorraine.

Autism and disability in society

Thomas Henley, an autistic YouTuber and creater of the Thoughty Auti podcast, described how he can both love and hate being autistic. As only 22% of adults with autism are in work and 40% live with depression, social isolation can be a real problem.

Autistic people may experience challenges in society due to the ‘medical model of disability’, which assumes that people are disabled by their individual impairments or differences themselves. This model implies that the autistic brain should be treated to make it more neurotypical in order to achieve a better quality of life. Neurotypical life is the ideal in this model.

In contrast, the ‘social model of disability’ states that people are disabled by the interaction of their differences with external factors or society. In this model, social structures, attitudes and provisions should be adapted to fit the individual better. With improved support and integration, a high quality of life becomes possible without needing treatment. For Thomas, autism is a ‘differability’. “It has its upsides and downsides, just like being neurotypical,” he explained. “There is no ‘right’ way of being! Rather than treat autism, we should instead treat the conditions that co-occur with autism, such as mental health conditions.”

In mental health support there are very few specialists in autism and they tend to be available only privately at a high cost. There are not many targeted services available through the NHS and research into autism and mental health is also not well funded. “Nor is there much research into the upsides of autism!” pointed out Thomas. He remarked that there is an increasing media presence for autism and autistic characters, but many stereotypes still persist.

“Ironically, autistic actors are not playing autistic characters on TV because they often don’t fit the stereotypes!” said Thomas. Seeing truer representations of autism on screen would help to raise awareness and understanding, creating a society that is better able to adapt to the ‘differabilities’ of people with autism and (hopefully) improve their wellbeing.