At Care 4 Quality, we provide support to services across the UK, including those specialising in supporting individuals with Autism. During Autism Acceptance Week, we aim to bring attention to the difficulties faced by individuals on the spectrum, the challenges encountered by care services, and, importantly, the actions that can be taken within the sector to create a more inclusive and supportive environment.

What is Autism?

Autism, or autism spectrum disorder (ASD), is a complex neurological condition that affects a person’s social skills, communication, behaviour, and interests. Autism is not an illness, it’s a spectrum disorder, meaning individuals with autism can experience a wide range of symptoms and severity levels. While some individuals may require substantial support in their daily lives, others may lead relatively independent lives.

Living with autism brings a unique set of challenges that vary from person to person. Some common challenges include difficulties in social interactions and communication, sensory sensitivities, repetitive behaviours, and adherence to routines. These challenges can significantly impact an individual’s ability to navigate everyday situations, build relationships, and engage in activities that others may take for granted.

Challenges Faced by People with Autism

Autistic people have many different abilities, strengths and weaknesses which are individual to them.

A common challenge among individuals with Autism, is anxiety, with research indicating elevated levels compared to neurotypical peers. However, due to communication challenges, autistic individuals may struggle to express their anxiety, making social interactions and situations difficult for them. Anxiety in ASD can manifest through various symptoms, including social phobia, obsessive-compulsive behaviours, and resistance to change. It is important for individuals on the spectrum to have structured planning, as they often struggle with changes in various aspects of life, from major transitions to daily routines such as leaving the house or trying new activities, therefore benefit from using visual supports like schedules and social stories.

Societal norms can also present a significant challenge for individuals on the Autism Spectrum as they may struggle to comprehend social conventions and non-verbal cues, leading to potential confusion and miscommunication. Challenges in emotional regulation and relationship-building, along with the limited societal Acceptance of autism, often hinder opportunities for individuals with ASD to reach their full potential and achieve independence.

Challenges Faced by Care Services

Care services dedicated to supporting individuals with autism face their own set of challenges.

The Autism Alliance’s ‘Breaking Point’ campaign shed light on the severe consequences of the social care crisis on autistic adults in England. Statistics from the campaign revealed alarming gaps in essential social care for over 10,000 autistic adults, leading to prolonged wait times and inadequate support. The root of this crisis lies in long-term underinvestment in adult social care, exacerbating existing inequalities faced by autistic adults in various aspects of life with a society that puts barriers in their way at every level from getting a diagnosis to getting the required support. Statistics show that autistic adults and their families wait over 2 years for care to be provided and even when care is in place almost half (48%) say it doesn’t meet their needs.

The Autism Alliance’s campaign highlighted the increased need for a greater understanding of autism across all levels of the system, from commissioners and social workers to care providers. There needs to be more support for social care providers specialising in services for autistic individuals and their families to ensure adequate provision to meet the demand. There is a need for a more defined mechanism for recognising high-quality social care services for individuals with autism.Top of Form

Oliver McGowan

Oliver McGowan’s story is a poignant reminder of the profound impact of medical decisions on individuals with complex needs, such as autism and epilepsy. Despite Oliver’s remarkable resilience and achievements, his life took a tragic turn due to medical interventions that failed to consider his unique needs and sensitivities. A lack of understanding and adjustments regarding Oliver’s condition led to inappropriate medical treatments and resulted in a series of detrimental decisions, including excessive restraint methods and a failure to adapt the environment to meet Oliver’s needs. Despite the efforts of his family and community-based professionals, Oliver’s condition deteriorated rapidly, ultimately leading to irreversible brain damage and his untimely death.

Oliver’s tragic outcome underscores the critical need for all social care and healthcare professionals to listen to and respect the perspectives of individuals and have the required training to meet the needs of those they care for.

The Oliver McGowan Mandatory Training is now the government’s preferred and recommended training for health and social care staff. It is essential for all providers, regardless of their speciality, and for all staff members, including ancillary staff. Although sourcing this training may be challenging initially, e-learning options are available.

Services must:

• Ensure that all staff receive training in how to interact appropriately with people with a learning disability and autistic people, at a level appropriate to their role.
• Ensure staff receive appropriate supervision in their role to ensure they demonstrate and maintain competence in understanding the needs of people with a learning disability and autistic people, including knowing how to support them in the best way.

What Can We Do?

It is important for services nationwide to prioritise increasing understanding and Acceptance of Autism through mandatory training and support of national initiatives like Autism Acceptance Week. By dispelling misconceptions and promoting acceptance through education efforts, we can work towards creating a more inclusive society where individuals with Autism feel supported and valued. Creating environments that are inclusive and accommodating to individuals with autism is essential. This can involve implementing sensory-friendly practices, promoting diversity and acceptance across all stakeholders, and advocating for inclusive policies.

Services supporting people with autism are entitled to live as ordinary life as anyone else as outlined in CQC’s Right Support, Right Care, Right Culture. This can only be achieved by recognising and celebrating the strengths and talents of individuals and by empowering them to reach their full potential. Encouraging opportunities for skill development, employment, and self-expression can contribute to their overall well-being and success.

We asked our Care 4 Quality consultant, Neil Johnstone, a specialist in Autism, a few questions surrounding Autism in Health and Social care and wider society and here’s what he had to say:

Q: What are some of the main challenges encountered by services supporting individuals with autism?

One significant challenge revolves around communication barriers. Often, services presume that nonverbal individuals lack decision-making abilities regarding their care plans and lives. This overlooks potential communication avenues and leads to simplistic care plans focusing on limitations rather than capabilities.

Q: How can these challenges be addressed?

Addressing these challenges requires investing in staff training and communication-enhancing technologies such as tablets and specialised software. Additionally, recognising that individuals express themselves through behaviour is crucial, working on the premise that people with complex needs, both verbal and non-verbal express their “voice” through their actions and behaviour.  By interpreting and analysing their actions, valuable insights can be gleaned to understand likes and dislikes. This information has to be documented in care plans and utilized to appropriately train staff members.

Q: What role can wider society play in supporting individuals with autism?

Wider society can contribute by implementing practical measures such as touch-screen interfaces in public buildings and providing autism education for public sector staff to reduce stigma. Businesses, like supermarkets, could integrate user-friendly software into self-service systems to accommodate diverse communication needs.

Q: Can you share examples of outstanding care in adult social services for individuals with autism?

Outstanding care often involves extensive staff training, personalised care plans, and prioritizing individual involvement in decision-making processes. The recent BBC series by Chris Packham showed some fascinating perspectives of how people with autism felt about the stigma and the difference it made when they were able to have a voice.

All the effort put into empowering individuals is ineffective if they are not heard and if care models are based on assumptions, perpetuating a mindset of institutionalization. Those in our care should have the autonomy to make decisions based on their own preferences and requirements, rather than on presumptions or the convenience of staff scheduling.

Care 4 Quality Support

During Autism Acceptance Week, it is important to acknowledge the significance of understanding, acceptance, and support in promoting inclusivity within society. By increasing our knowledge, investing in care services, promoting inclusiveness, and empowering individuals with autism, we can collaborate to create a world where all individuals, regardless of neurodiversity, can excel.

Care 4 Quality provides a variety of support services, including mock inspections and support visits, to assist you in meeting the needs of your service users and compliance with regulations. For further information, please contact us.

To download our FREE Sensory and Environment Audit click here.