What is Autism?

Autism is a lifelong developmental disability that affects an individual’s behaviour and communication. People with autism may lack social awareness, emotional reciprocity and the ability to sustain conversations. Autism Spectrum Disorder (ASD) is characterized by severe and persistent deficits in social communication and interaction (American Psychiatric Association 2013). In the UK the Autism Act (2009) led to the government producing statutory guidelines for autism. With a clear pathway of diagnosis, where everyone has a right to an assessment. 

Most parents notice some symptoms of autism when their child is two or three years old but these symptoms can change as the person gets older. The characteristics may be different in girls than in boys so diagnosis can be difficult. There is also a lack of a genetic or medical testing and the impairment may also be accompanied by other conditions such as epilepsy, ADHD and learning disabilities. People with autism may also have a co-morbid mental health condition such as anxiety or depression.

Features of Autism

Wing and Gould (1979) identified a Triad of Impairments with difficulties with social communication, difficulty with social interaction and difficulty with social imagination. People with autism may find it hard to keep eye contact due to an overload of speech, facial expression and body language data to process. They may also be unaware of personal space and may be unaware of non-verbal cues in communication.

They may also exhibit restricted or stereotypical patterns of behaviour and can be hyper (over) or hypo (under) stimulated by their environment. This can result in obsession with a particular topic, self-stimulating behaviours such as finger clicking, hand flapping, and an overload of emotional and sensory information, resulting in ‘stimming’.

According to Martin (2009) Baron-Cohen’s theory of mind can be considered as the fourth impairment for people with autism. As they will find it hard to imagine a world from someone else’s perspective and understand that other people have different thoughts and feelings independent from their own. This can be misinterpreted as a sign of rudeness as they may not be able to see things from another person’s perspective.

Working with autism

These difficulties can have the effect of preventing someone with autism feel the close bonds of relationships, and over compensatory rituals and routine can provide them with a feeling of safety and reassurance. So it makes sense that people with autism find routine very reassuring, although it is important to note that people with autism can adapt to change they just need support with time and preparation given to them so it is not just a sudden change that can make them feel overwhelmed.

Practitioners have advocated the importance of early intervention with environmental stimulation appropriate to a child’s needs is necessary for developing creative thinking in children. As many people with autism may need help with sensory processing to help them balance and regulate environmental stimuli. For instance some people may be sensitive to light or noise while they may need extra tactile stimulation. So in some cases it can be about thinking of the senses as a ‘graphic equaliser’ where people need help to balance their sensory input.

Strategies to encourage social interaction and communication can include the use of visual aids to help promote understanding and reduce anxiety. Carol Gray developed the use of ‘Social Stories’, while pictorial story boards can be useful. TEACCH promotes structured learning environments that encourage visual based engagement and communication. Also helpful is the use of a temperature gauge so they can communicate their feelings.

Creative strategies to help to attune and develop interaction and communication with people with autism. As often for two way verbal conversation can be too overwhelming due to the fact that they struggle to cope with verbal, nonverbal and body language, all at the same time. Arts Therapists encourage use creative mediums such as art, drama and music to engage and aid communication and interaction. Working together on an art object or creating a performance can be a less intrusive way of building a relationship for a person with autism. It may also meet their sensory needs and be a way of discharging emotion with directed movement and action.

Autism and Social Camouflaging

Hull, et al (2017) discusses social camouflaging, which is how people of all genders manage the way others perceive them in social situations. They suggest that people with ASD struggle with this have and it takes a lot of mental effort minimise their social soothing behaviours in public and this can cause stress and anxiety. A person who may seem to be functioning well in society may actually struggle to maintain this.

They also point out that this may account for less girls being under diagnosed with autism as boys will more likely to exhibit externalizing behaviours such as hyperactivity and conduct problems. While girls are more likely to internalise these difficulties leading to difficulties in emotional wellbeing.

This explains why often people with autism can struggle with mental wellbeing and emotional regulation, compared to the ‘neurotypical’ population. So it is useful to help them with coping strategies and when they do feel distress. Ccording to Connoer et al (2018) adaptive cognitive strategies can be successful with anxiety, but they are less successful at helping someone deal with destructive feeling and aggression. As over thinking and rumination can be a maladaptive response.

References

Conner, C. White, S. Beck, K. Goltx, J. Smith, I. Mazefsky, C.(2018)  Improving emotion regulation ability in autism: The Emotional Awareness and Skills Enhancement (EASE) program. Autism, 1–15. Sage Journals.

Hull, L. Petrides K.V. Allison, C. Smith, S. Baron-Cohen, S. Lai, Meng-Chuan Mandy, W. (2017) “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions.  Journal of Autism and Developmental Disorders. DOI 10.1007/s10803-017-3166-5

Martin, N. (2009) Art as an Early Intervention Tool for Children with Autism. Jesssica Kinsgley Publishers

Wing L. and Gould J. (1979) Severe Impairments of Social Interaction and Associated Abnormalities in Children: Epidemiology and Classification. Journal of Autism and Developmental Disorders 9 (1) 11-29

A postscript from Apple House HQ:

Huge thanks go to Andrew Wright, qualified art psychotherapist and valued member of the Summerwood staff team, for kindly sharing this detailed and interesting article he has written for our blog. We are incredibly fortunate to have such a talented and creative team member. We have Andrew’s full permission to share the above article but Andrew remains the copyright holder of the work and no sharing or use of his work is permitted without authorisation from the copyright holder: Copyright: Andrew Wright 2020.

Importance of creative activities and exercise for people with autism

Introduction

At Apple House care homes we strive to advocate a healthy lifestyle and to be as independent as possible. We provide access to a programme promoting healthy living and wellbeing, with home cooked fresh food, regular exercise, and creative activities. This article outlines why it is important to give people with autism the opportunity to take part in creative activities and regular exercise.

Challenges for people with Autism

For people with autism, you may notice that they can have challenges in interacting in social situations as it can be overwhelming at times with direct verbal communication. We may not get a direct response or eye contact and we can wonder if we have been understood. So it may also be a struggle to build a relationship through words alone.

Often people with autism can have rigid mindsets at times as this can be their way of making sense of the world around them. So, therefore, they can find change difficult as they feel reassured by a routine that gives them a sense of control. They might not always understand that a change in routine may be something beyond their carer’s or parents’ control such as an illness of a friend, or a change in who supports them due to outside factors; Covid restrictions have been an exceptional challenge for many. Help and support may be needed in regulating  emotions in response to these situations.

Sensory experiences

Jackie Edwards (2017) describes how people with autism may have difficulty making connections between their tactile, vestibular and proprioceptive sensory systems where they may be overactive or not active enough with how they interact with their environment.  For example, they may have a hypersensitivity to loud noise or bright light, may also be de-sensitised to tactile experiences. So, therefore, they would benefit from a sensory diet to improve sensory integration.

She advocates giving people with autism access to different sensory experiences to help improve concentration and attention. In order to help them to be able to regulate awareness to the surroundings more effectively as well as helping them to relax and not feel overwhelmed, leading to increased socialisation and interaction. Promoting less rigid thinking, creativity, and motor skills.

Benefits of exercise

At Apple House care homes we recognise this importance by supporting and encouraging residents to access their community, taking part in physical exercises such as the gym (when safe to return) and swimming, and to help with gardening, tending the vegetable patch, and cycling.

According to Healy S, et al. (2018) research people with autism exercise can have a number of benefits:

• Reducing stereotypical behaviours or self-stimulating behaviours
• Improving social skills with sports that promote teamwork
• Helps to reduce weight gain or obesity
• Can increase a person’s attention as repetitive behaviours can decrease.
• Exercise can reduce anxiety and improve the ability to regulate emotions, build resilience to anxiety-triggering situations
• Exercise can improve motor skills and coordination for people with autism

Benefits of creative activities

The creative arts is another important activity and we support residents to actively participate in regular arts and music classes in the community and in the home.

Art can give a person a sense of control as they learn to adapt to the task in their own way. Drawing and painting can also help to improve and maintain fine motor skills. Creative arts can be an effective way to engage with the person in a non-pressurised way. Tactile art forms such as paint and clay also provide a sensory experience to fulfill the needs of the person to be able to balance their sensory experiences more effectively. Music can elicit interactive emotional responses and melodic rhythms can help individuals to engage.

Arts and wellbeing

People with disabilities can be more vulnerable to mental health issues so we are aware that it is important to provide a way for people to communicate their emotions appropriately. Behaviours on the surface may arise due to an inability to verbally communicate how they feel. Behaviours thus can have a function so this highlights the importance of non-verbal communication and communication aids to help people communicate their needs.

For further assistance, creative arts therapy with a trained art therapist can be a way for a person to be able to express or regulate their emotions when words are difficult, helping to improve cognition and emotional regulation. Where the aim is to use the art materials or creative activity to access emotional wellbeing and to help a person learn to regulate their emotions and understand themselves within a safe and facilitating environment.

— Andrew Wright, Senior Support Worker and Trained Art Therapist, Little Amberwood care home.

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References and further reading:

Draycot, C. (2013) Educating Autism – Art and Creativity to Engage an Autistic Child in the Classroom. The Art of Autism: Connecting through the Arts. https://the-art-of-autism.com/educating-autism-art-and-creativity-to-engage-an-autistic-child-in-the-classroom/

Edwards, J. (2017) The benefits of multi-sensory environments. Autism Journey Blog.

Healy S (2018) The effect of physical activity interventions on youth with autism spectrum disorder: A meta-analysis. Review article. Autism Research. 11(2) · April 2018.

Rudy, L.J (2017) How Does Art Therapy Help People With Autism? Very Well Health. https://www.verywellhealth.com/art-therapy-for-autism-260054

Finalist for The Frontline Leader Award

 Rebecca Blackmore:

Here are some of the things that our manager Sharron and the team have to say about Bex:

Rebecca who is known as Bex started working in our company in 2014.

Caring, compassionate and focused on helping and supporting people to be the best they can possibly be.

One of her strengths is also her cooking ability. Utilising this skill Bex is able to support individuals with healthy eating. She uses aids such as easy read menu’s and supportive technology, supporting individuals to understand the types of foods in their meals and understanding healthy options.

Bex has also inspired the individuals during house meetings to: choose a country, plan shopping lists, discuss a menu from the country, discuss utensils needed to make the meal, along with looking up information with individuals regarding the culture or the country. This will culminate once a month with the  person preparing the meal and hosting a lovely party. This creative use of skills in enhancing peoples lives and teaching independent living skills is wonderful and a real credit to Bex.

Her confidence has grown immensely, and this has transpired into Bex working and now achieving a senior role within Redcroft, taking on extra responsibilities such as Fire Marshal. Along with supporting staff as our advocate for dysphasia, oral health and supporting staff to be more confident in themselves.

She goes the extra mile when it comes to looking for fun ways to raise money for charities; Bex has helped to raise money for Macmillan, Red Nose Day and local Dorset charities. She rallies the residents round and gets them fully involved which gives people a sense of purpose and well-being. Bex has helped to raise awareness of these good causes and wanted the people she supports to feel a part of that experience. She is a shining example of a brilliant support worker and we are proud to nominate her for this award.

Thank you Bex for everything you do and we are all very proud of you.

The National Learning Disabilities & Autism Awards offer a unique opportunity to showcase and celebrate the successes of individuals, teams and businesses in the learning disabilities and autism sector – people and organisations who really do make a positive impact on people’s lives. They aim to pay tribute to people who specifically support those with learning disabilities and autism and recognise inspirational individuals with a learning disability and/or autism who make a real difference within their communities.

— Romaine Lawson, Director of Operations

‘Anjali is a dance company with a difference – all of its performers have learning disabilities. They are currently in training with top choreographers ahead of a Uk and world tour.’ –BBC News, Sept 2017.

Watch Anjali on the BBC HERE!

Anjali are one of many dance companies springing up around the country aimed at and formed by dancers with learning disabilities. They really are showcasing the joy of dance!

Dance is perhaps one of the oldest ways of expressing ourselves, emotion playing a large part in pushing our bodies to move to rhythm.  Used for centuries as a social communication and bonding tool, in ceremonies and rituals, for healing and as a method of expression, dance is a constant in our lives whether as watchers of Strictly, participants of ballroom dancing classes, the first dance at our weddings or simply alone in the kitchen with a spatula in hand.

Communication, bonding, healing, expression…What about health benefits, our mental and physical wellbeing?

Health Guidance remind us that most of us are not active enough to maintain a really healthy body. We have become a sedentary world of watching TV, playing video games and doing activities that don’t involve activity. There are those of us too for whom going to a gym, a game of squash or long forest bike rides are not physically possible or we can’t afford it or we simply don’t have time. We may have a disability that precludes us from running or weight training and, let’s face it, those are not necessarily fun!

Think then of the health benefits of dance. The social interaction and the fun element of dance means that not only are our bodies being exercised, weight controlled and muscle tone improved, but we are feeding our senses with music which in turn has proven benefits to our mental wellbeing.  Dance causes our bodies to release happy hormones, endorphins, natural antidepressants. There are studies that prove dance helps our memories and prevents the onset of dementia (the science bit refers to dance increasing the volume of the part of our brains that naturally shrinks leading to memory loss and dementia).

Dance is good for all! 

We don’t need to be super fit to in some way participate in dance.  Whatever our ability, dance will help awareness of our whole bodies.  It will give us spacial awareness and balance – all of these benefits transferring into everyday lives outside of dance.

We all have the right to experience the joy of dance…

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“Paying for sleep-ins at an hourly rate means that the sector is faced with a real and potentially overwhelming funding crisis.” — Mencap, July 2017

Apple House, as a responsible employer, has been paying its sleep duty staff the NLW since its introduction.  This had a huge impact on our staffing budget.  We, like most providers, see scant if any increases in fees in spite of the introduction of compulsory pension schemes and a further hike in the NLW this April.  So, while employment costs spiral, fee increases are not forthcoming from local authority funders while inflation soared and led to, in real terms, a reduction in fees in comparison to escalating costs.  Surely a recipe for disaster…an economic ticking bomb?

Local authorities are struggling too! Their pot of money is finite and already allocated to meeting the essential needs under a duty of care.  

A report by The Independent this month stated, ‘Uk on brink of social care crisis, Government warned.’ Although the article focuses on care of the elderly, its stark warning has been echoed across all corners of social care including learning disability care provision.

Whilst this blog post isn’t a political rant, I think we all see that funding for social care in the UK has to be increased, ring fenced, targeted to the front line if a real crisis is to be averted and the most vulnerable in our society are to be respected, supported, protected, empowered.

So, what’s the real situation with funding sleep duty, with rightfully paying staff the NLW?

Good question!  At a providers’ forum I attended some months ago, approximately 60-70% of care providers stated they were not paying the NLW hourly rate for sleep duty.  They continued to use the old model of paying a fixed wage to night staff for the sleep element of their shift.  Ah ha! some exclaimed, Be careful! It’s only a matter of time before you’re hauled before a tribunal and forced to back-pay those sleep staff. Humph! replied some.  We’re not paying people by the hour to sleep!  I listened and felt rather relieved that we had taken it upon ourselves to bite the bullet, to pay by the hour right from the get-go.  Yes, it was painful, but to us it seemed logical and fair and right.

Now, those tribunals have started.  Care providers are facing an HMRC crack-down, are being told to pay up to six years back pay.  Mencap are calling for HMRC to hold a stay of execution, for a definitive answer on the whole issue of sleep-in pay.  Meanwhile, what of agencies, of care homes and domiciliary care? What of Grandpa’s sleep-in support worker, your neighbour’s sleep-in support worker, of the workers who sleep-in to keep people safe and cared for, to assist their independence and aid wellbeing…at night in care homes, nursing homes, our parents’ homes? 

What happens to that tier of critical support if the cost of sleep duty increases exponentially while there is no additional funding available to pay for it?  What becomes of the rights of the disabled who are seemingly adrift amidst this brewing storm that everyone is warning is inevitable?

“Already chronically-underfunded care providers and local authorities have to find additional money that simply isn’t there currently.” — Mencap, July 2017

What can we do?

Share share share on social media.  Raise awareness of the impending crisis and please do support Mencap’s initiative to have a stay of execution for social care providers who haven’t been paying the NLW for sleep duty, who face crippling back-pay costs which could lead to home closures.  Lobby your MP so that there is an inquiry that will lead to a definitive decision on sleep duty pay and additional funding for social care.

And, to end on a positive note, let’s not forget all the wonderful and dedicated support workers who work the sleep duty: Thank you!  

— Jane Montrose, Managing Director

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Apple House were so very honoured to be national finalists in The National Learning Disability and Autism Awards!

Last Friday Romaine, Director of Operations, and Jane, Managing Director, travelled to Birmingham to the ICC for the gala dinner that preceded a glittering awards ceremony.  Although we didn’t win, the fact that we reached the finals was really something for us!  Everyone there really were winners and completely inspirational.

We were entertained by the ultra talented Dance Syndrome who had some incredible moves!  Also entertaining us all was the super funny actress Sally Phillips of Bridget Jones notoriety who (in spite of her insistence otherwise) can sing beautifully

And here we are collecting our finalists certificates which we are very proud of.

Congratulations to all the winners and finalists.

“Having carried out over 33,000 inspections of around 24,000 different services, most of the adult social care sector is meeting the Mum Test, providing safe and high quality care that we would be happy for anyone we love, or ourselves, to receive. This is thanks to the thousands of dedicated staff and providers who work tirelessly to ensure people’s care is truly person-centred and meets their individual needs.”–Andrea Sutcliffe, Chief Inspector of Adult Social Care at the Care Quality Commission.

Apple House care homes are among the 77% of adult social care services that are ‘good’ and, as CQC themselves say, this should be celebrated.

But what of the rest?  How can providers pass the Mum Test?  How can they ensure that the service they provide to others is of a standard high enough that they would be satisfied to receive it themselves or for their loved ones?  What of the estimated 20,000 vulnerable individuals of our society currently being supported in one of the 2% of care homes that are ‘inadequate’ or the 17% that require improvement?

CQC inspect all social care providers and base their inspections around five key questions:

1. Are they safe?
2. Are they effective?
3. Are they caring?
4. Are they responsive?
5. Are they well-led?

CQC, and many other organisations, believe that staffing levels, training and motivation directly impact the quality of care delivered.  We agree wholeheartedly! Look again at the five key questions: all can be attributed in large part to staffing and not just numbers but quality.  Staff recruitment and retention is a challenge but we must always remember that it’s not just about recruiting, but it’s predominantly about ‘who’ we recruit, ensuring they’re caring and kind.  In our opinion, care is only as good as the people giving it; care homes only as good as their teams.

The good news for those of us within the learning disability specialty, is that 88% of LD specialism care homes are ‘good.’  This demonstrates that LD providers are ‘organising their services to meet people’s needs, and staff are involving people in their care and treating them with compassion, kindness, dignity and respect.’ [CQC, 2017]  However, it also means that 12% are ‘inadequate or require improvement.’  That’s a lot of people who are not being supported adequately or appropriately which of course is a great concern.

Pulse Today, the primary GP website, suggest that ‘The fragility of the adult social care market is now beginning to impact on the people who rely on these services.’  There are more people with long-term illnesses, more diagnoses being made, a challenging economic climate: all of these factors mean a greater demand on services and more problems for people in accessing appropriate care and care of a high standard.

Is funding affecting quality?

Institute For Government, in their spring 2017 publication, ‘Performance Tracker’ for adult social care, refer to the rise of adult social care in the political agenda late last year when announcements were made of additional social care funding.  However, they suggest that since 2010, spending on social care has fallen in real terms by a whopping 6% – but this is a fluid and ever-changing figure and we don’t want to get too political on our blog!  Suffice to say there are ever-increasing demands on state-funded social care.  In this regard, they refer to the ADASS survey [Association of Directors of Adult Social Services, ADASS Budget Survey 2016, ADASS, 2016, p. 11] in which 82% of local authority social care directors reported that providers in their area were facing ‘quality challenges’ due to financial pressures.

How does the culture within care homes impact on quality?

“Positive culture was something that characterised good performance and improvement. Both staff, people who use services and inspectors commented on particularly positive and supportive cultures characterised by staff who were well-trained, caring, skilled, dedicated, enthusiastic and focused on positive outcomes for people. The cultures of the services were also highlighted as being open and transparent, with a culture of improvement based on good practice and feedback.”–CQC on positive culture in the best care homes.

So, culture within homes – culture that nurtures, motivates and supports staff is definitely a major factor in making things better within adult social care.  We believe that this ethos stems from good, solid leadership and positive teamwork.  We have a culture of not wearing uniforms: we work in people’s homes, they don’t live in our workplace.  We have a culture of being ‘family welcoming,’ as demonstrated by our accolade from John’s Campaign, supporting family friendly culture within residential care settings.

As CQC say, ‘There is a lot to be proud of in adult social care, but still more work to be done.’

Adult social care is evolving and it’s crucial that care providers evolve too, that we all continue to provide the very best quality of care possible and pass ‘The Mum’ test.

— Jane Montrose, Managing Director, Apple House Care Homes

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Good luck to Apple House and the other finalists!  We’ll let you know how we get on.

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Romaine Lawson, Director of Operations for Apple House care home group, travelled to Birmingham to represent us.  Romaine said, “It was such an honour and privilege for Apple House to be finalists alongside national charities and city councils as one of only ten finalists in the country for the ‘Best Employer’ category.”

An honour indeed.  We are but a small company of dedicated professionals and to be a finalist for such a prestigious award has really rather taken us aback in the best possible way!

So, here’s keeping everything crossed.  To our team: we adore you.  Here’s to you!

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