Caring for autistic people

Staff members Cheryl, Nicole, Demetre and Lynne support people with complex disabilities at Livability Anvil House residential care home in Essex. This #AutismAcceptanceWeek, we took the opportunity to ask staff how they approach support for non-verbal and autistic individuals.

What are the main things you’re aware of when supporting an autistic individual?

Nicole, team leader: ‘I feel the most important thing is to communicate clearly to ensure the person understands you, and that they are being heard and understood by you. This involves being patient and allowing the person to take some time to absorb and process what is being told or asked of them.’ […]

Demetre, enabling support worker: ‘Assumptions are often made that the individual has limited cognitive skills, when in fact they may have an understanding of what has been said, but have difficulty providing a response. Wait for a response and don’t make the assumption that they have not heard or understood you – an autistic person may need more processing time.

Cheryl, enabling support worker: Routine is important to the autistic people we support. Staff take care to follow care plans so we’re all singing from the same song-sheet, because the unexpected can cause confusion and trigger behaviours. Before we go out, we would show our autistic residents objects of reference, like their coat, keys or wheelchair.

Lynne, enabling support worker: I try to not overload someone with lots of questions, nor talk too fast or loud – just keep the tone nice and calm. […] I try not to become too animated and I also like to sit on the floor if that’s what they prefer to do. […] I also keep what I’m saying short and sweet. If someone appears agitated with me being in their personal space, I will move away, let them calm down and come back to me. When supporting a non-verbal autistic person instead of asking questions, I will show them picture cards, for instance of places they would like to visit. If we go into town, I would look for somewhere not too crowded or bright or noisy so they will not be overwhelmed.

N: Yes, it’s vital that people who are non-verbal don’t have their choices limited or overlooked. We must empower people to make their own decisions wherever possible and to be involved in their own care so that their individual needs are met.

How do our enabling support workers support situations that may be challenging to some autistic people?

L: Telling someone in advance what we will be doing that day, just in case they worry or want to go out straight away and get excited or even anxious about the day ahead.

N: I tend to avoid being overly chatty and giving lots of unnecessary detail when speaking because often people with autism find this to be confusing or overwhelming. I try to avoid physical touch to maintain professional boundaries. Sometimes a person we support may initiate a handshake, a high five or perhaps a hug. In these instances, it’s important to make sure that the person is entirely comfortable and safe. Some autistic people dislike being touched all together so this needs to be respected, others may be overly affectionate at times and need gentle reminders to set boundaries and ensure everyone is safe and well.

How do you create a supportive and inclusive environment for autistic individuals in and outside the home?

N: To make somebody feel at home, it’s important to be positive and offer a lot of praise and reassurance. It’s vital for people with autism to feel included. I think a great way to get people involved is to take part in simple household tasks such as watering the plants, making people a cup of tea, cleaning surfaces, hoovering, or taking the bins out. These actions help people to develop independent living skills and also help them to feel like a valuable member of the team who is contributing in a meaningful way.

D: We have lots of laminated pictures so the person we support can point at what activity they would like to do. There’s always a choice at Anvil, including flower arranging, painting, gardening, cooking, baking and having picnics.

L: Our people enjoy going out in the car and to different places to eat, especially a pub or garden centre. I always check the places out first, along with the time of day we’ll be going out. It’s best to go when not busy but I do believe that everyone has a right to enjoy their lives. If a situation becomes challenging for an autistic person and people stare or point, I just keep a calm happy persona and use distractions, like looking at a menu.

How do you enable people to co-produce their care plan and get the most out of life?

N: Autistic people we support are unique and individual. We adjust individuals’ care plans and routines to suit them and to adapt them so that they genuinely reflect the needs and desires of the person. For example, we have created an activities board so that people can visually see different options about what to do and where to go like flower arranging or painting, or going to the park or to a museum etc. This helps the people we support to be more active in their own decision-making, which we certainly promote.

L: Many autistic people can benefit from some level of routine in which they make choices about where they like to go and what they enjoy doing. This is then something they can expect, look forward to, and feel familiar and comfortable with.

D: I am a key worker for one person here and I’ve been encouraging him to go for daily walks, and to help prepare his breakfast, lunch and most of his drinks. At first this individual wasn’t keen to try this but now he smiles and occasionally laughs, expressing his joy and happiness. A new routine that some would consider a minor change actually makes a big impact on the individual’s life, building confidence and independence.

What rewards do you, as a professional support worker, get out of supporting an autistic individual? 

L: I get a lot of satisfaction knowing that I have hopefully brought a bit of joy and happiness into people’s lives and they can feel confident and safe at Anvil House.

D: Seeing the people we support smiling, laughing, and just expressing their happiness is enough. Encouraging and supporting them to be as independent as they can and watching them grow confident makes you feel like you have done a brilliant job, and that you have made a great impact on an individual’s life.

N: Working with autistic people is very rewarding. I am able to build meaningful relationships with people based on mutual respect and trust and can help to make changes to that person’s life to improve their overall wellbeing. The main thing to do to make people feel accepted is to view them as an equal, to make an effort to understand their choices and desires and to be responsive to these, to treat people with respect and kindness and positivity, and to be non-judgemental.

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