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!

Diversifying school governing boards – some hints and tips

As schools tentatively throw open their doors for the first time since the March Covid shutdown, Governors for Schools turned their focus on anti racism and diversity on governing boards.

Hannah Stolton, CEO of Governors for Schools welcomed a diverse panel for a discussion on diversifying governing bodies. As a member of a network of governors and a former Chair of Governors, I know that recruiting governors is a never ending activity and broadening the demographic of volunteers can be an added challenge.

Josephine Okokon, headteacher and governor, recommended the individual approach to bring people on board. “Think about what people are adding to the community as well as their leadership skills,” she advised.

Raj Unsworth is an advisor to a headteachers round table group and has been a governor in many settings, from schools in the proverbial ‘leafy’ areas to challenging inner cities. “In each case, I was usually the only black or brown face in the governing board,” he said. He pointed out that multi academy trusts have more flexibility in their governance structures than maintained schools, including reducing the number of parent governors or eliminating them altogether. “By phasing out the parent governors, you remove a common route for BAME governors into governance,” he warned. In his view, governing boards should reflect society in general NOT just the profile of a particular school. “It’s important for all students to see BAME governors in leadership positions,” reminded Raj.

Adrian McLean, a parent governor explained that ‘word of mouth recruitment’ tends to perpetuate the existing make up of the board. Personally, he said that he rarely encountered other black males in governance. “Schools can be intimidating places and if you have had negative experiences at school yourself, you may not be motivated to go back as a governor,” he said. His advice is to approach community leaders from a range of backgrounds to either take part themselves or to recommend others they know. “Put ads up in places you usually wouldn’t consider, like the local gym. Ask yourself whether you really require previous educational experience or a degree to be a governor? Offer training and mentors to bring people on board,” suggested Adrian.

Governor Rosemary Hoyle advocated establishing a “culture of everyone”, encouraging boards to have honest discussions about their diversity and to perhaps appoint an equality, diversity and inclusion link governor.

Sharon Warmington, founder of the National Black Governors Network warned that racism in secondary school could be subtle but still obvious. Black students may find themselves automatically placed in low achievement groups, or being given careers advice with limited aspirations, which happened to her at school. “Just the presence of black governors and leaders in school makes a huge difference,” she said. “That could be on websites, photo boards or at school events and in the staff.”

Key things to remember:

• Avoid tokenism
• Diversifying your governing body is NOT lowering the bar – it is about widening your reach and being more inclusive
• Reflect your school’s ethnic make up at least, but strive to represent society as a whole
• Reach out to professional networks e.g. Black Lawyers Society, BME groups at banks, black churches

Overall, if you want to inspire *all* your students, remember you cannot be what you cannot see!

From corporate boards to women in tech: Day 2 of the Gender Summit 15

Day 2 of the Gender Summit in London brings a wide diversity of talks on the programme. Elena Doldor of Queen Mary University London spoke to us about efforts to get more women onto boards in the UK. After noting that lapel mikes are not always friendly to women’s outfits (prime example of single gendered thinking) she reminded us of the 2011 Davies Review in the UK. The Davies Review argued that UK listed companies in the FTSE 100 should be aiming for a minimum of 25% female board member representation by 2015. There is no legislation or fixed quotas for board members in the UK, but through voluntary efforts, female representation has grown from 12% to 28% in 5 years or so.

The new target is 33% female representation, but achieving this will be impossible without more women in the pipeline. “We can’t get lost in vague statements on how much we value diversity,” warns Doldor. “Companies can, and should, set themselves concrete targets to clarify their goals.” For example, UK bank RBS is aiming to employ 30% women in its top 5000 roles by 2020. “Metrics are very important and your rate of promotion should reflect your intake pool,” said Doldor. “If that’s not the case, ask yourself why? Career choices are not made in a vacuum! What is the culture of your organisation?” Doldor believes that the voluntary approach works without legislation, if you take a pragmatic stance and carefully define the processes that are going to drive change. “Leadership should be directly accountable for targets but you also need champions throughout the organisation. In academia, professors need to be good managers and powerful mentors, as well as outstanding researchers.” Ron Mobed of Elsevier agrees. “We need to show what good looks like. For me, there is concern about the behaviour of some young males, which is taking us backwards.”

The GEDII Project has focused on measuring representation and attrition for men and women across seven pillars of a Gender Diversity Index, shown below.

GEDII: Seven pillars of the Gender Diversity Index

They are working on a self assessment tool to calculate your own organisation’s Gender Diversity Index . When GEDII related gender balance to research performance, they found that women are cited at equal rates, but publish less, especially in less diverse teams. Linking policy down to individual team level is difficult, as policy tends to be set at an institutional level.

Nigel Birch of EPSRC introduced their study of women in ICT with Napier University.  Motivations for working in tech seem to split into 2 camps: those who are interested in the tech and people who are fascinated by what you can do with tech. Women tend to be more interested in the latter (although by no means exclusively). ICT has a reputation of being an ‘always on’, long hours culture and women have more competing responsibilities, for example from good citizenship activities. They are also less confident in their abilities, which can be a learned attitude based on years of negative input, coupled with a general sense of not fitting in and being treated differently. (Check out the Petrie multiplier for more on this phenomenon). The ‘softer’ skills in ICT are often valued less, and part-time and flexible working have a negative impact on career progression. Unfortunately, the study also found that bullying and harassment are definitely present in ICT, as in many fields.

All this is rather depressing news, but EPSRC does have a plan of action. This involves establishing a baseline to measure progress, and running a workshop with Government and academia. They plan to develop case studies, targeted at particular audiences and tackle discrimination, harassment and aggression alongside other UKRI partners. “Women need to have trust in the system to raise their concerns, and funders are a neutral party,” said Birch. Let’s hope that proves to be true.

Gender in physics: using an analytical approach with GENERA

As you walk up to the Kings College building on the Strand in London, the first thing you spot is their wall of fame, a series of profiles of the great and good from their alumni contact list. Women certainly feature prominently, but how many universities could easily field a high level female physicist? Many would struggle.

Typically, only 20% of physics graduates are female. The SHE 2015 report says that men are over two times more likely than women to choose engineering degrees. In 2012, women accounted for just 28% of PhD graduates in engineering and only 21% of those graduating from computing. In science and engineering, women represented only 13% of top-level researchers. The GENERA project is funded by the European Commission to improve these figures across Europe. Representing 13 institutes in 10 countries, with a wide network of observer institutions, the project aims to find solutions “From physics, for physics,” based on data and evidence. As project leader, Thomas Berghoefer put it, “Physicists are trained in problem solving and like to measure!”

“The problem with gender initiatives can be that they are often led by motivated individuals,” explained Berghoefer. “When they leave, progress can stall.” GENERA aims to create a sustainable network to carry on the work beyond the project. Part of the plan includes building an online toolbox of over 100 proven measures and instruments. A structured roadmap then provides a step-by-step framework for developing and monitoring an equality plan.

Steven Watt from Manchester University outlined some of the equality measures that have worked for them. External awards such as the Institute of Physics’ Juno scheme was useful but they found the national scheme, Athena Swan, easier to apply. Like many organisations, they struggled to attract female applicants to senior roles, so reached out and proactively invited women to apply. Dual career couples were invited in together to interview for different roles. Manchester created a fellowship explicitly aimed at improving diversity, to encourage a wider range of applicants, who could specify their own preferred field of work. This measure alone vastly increased the number of female and BME applicants. “We also realised that the leaky pipeline starts at school. You lose 30% of girls from physics at 9, 10 years old, so our outreach has focused on schools by connecting them with undergraduates,” said Watt. “The difficulty is knowing whether it’s effective in the long term.” As John Wanamaker quipped, “Half the money I spend on advertising is wasted. The trouble is I don’t know which half.” Tracking the impact of interventions at school age is highly challenging but potentially game-changing.

Nordforsk, the Nordic research funding agency has funded research into the ‘Nordic paradox’ where research seems stubbornly resistant to equality trends elsewhere in society. Nordforsk has found that they need to keep working constantly to maintain funding application rates by women.

Geneviève Guinot explained how part of the equality work at international physics lab, CERN, has been to broaden the definition of family to support researcher mobility, including unmarried and same sex partners. They have seen a surge in girls in early career programmes but this does not seem to feed through to applications for staff positions. “The reasons for this are not yet clear to us,” said Guinot. “We need exit interviews to understand what’s putting them off.”

Francesca Primas of the European Space Observatory pointed out that increasing the pool of candidates is just one element of the problem, as biosciences have a larger pool of graduates and post docs, but still see small numbers of women in senior management.

So what would be the one tip GENERA participants would give someone starting up a gender balance programme now?

“Find someone who has done it and find out how they did it!” Watt advised. For Guinot, the person leading the initiative needs to have credibility with the leadership. “Answer the ‘why?’ question and be robust about tackling bias,” she said. “Make sure you support the energy of grass roots initiatives and start small with achievable short term successes.”

After an intensive review of the Genera Toolkit, we were able to condense the various approaches into measures that were both high in impact and relatively easy to implement. These included the usual suspects such as childcare facilities, unconscious bias training and mentoring but also no cost extensions to contracts after parental leave and engagement with schools. A few gaps in the toolkit existed as well: being inclusive of LGBT+ when discussing gender, considering how gender inequality is affected by other factors, such as socioeconomic status and looking more deeply for the root causes of a lack of female applicants. One theme was very clear: change needs to be embedded into the organisational structure for everyone, not just those directly affected.