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  • 14 September 2021
  • 12 min read

Becoming A Carer Of People With Autism And A LD

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    • Mat Martin
    • Aubrey Hollebon
    • Richard Gill
    • Matt Farrah
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“If staff are not valued by the government, then I believe the people they care for are not valued either, it becomes a perpetuating concept.”

Lynn talks to us about caring for those with Autism and a Learning Disability. From the rewarding aspects, to the lessons to remember, Lynn explains everything you need to know.

Topics covered in this article

Crisis In Care

What Existing Staff Tell Us

The Young Disabled

Valuing Staff And Those They Care For

Career Progression Or Not In Some Case

Basic But Fundamental Knowledge About Autism

Autism Friendly Environment

Are People On The Autistic Spectrum Very Different From Us?

Autism And Happiness

Learning New Skills

Social Skills

How Simply You Could Make A Difference To The Lives Of Someone With ASD

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Crisis In Care

Currently the ‘Crisis in Care’ is a very hot topic in the media. Social Care is one of our biggest employers, with 1.2 million people working in the sector and this is on par with the numbers working in the NHS.

However, it is estimated that 149, 000 people left the Care sector between 2019 and 2020.

This situation has been exacerbated because of the pandemic but low wages, overwork and feeling undervalued have been suggested as the main reasons for this exodus from the industry.

Mark Collins, a Care Home Owner, speaking this year said “Despite widespread gratitude and praise for carers during the pandemic, in reality there is still a general perception that caring is the bottom of the economic ladder or carer food chain- something you do when you can’t do anything else.

Unless social care is seen as an attractive option, it will not attract people into it that we need.”

C. McAnea the General Secretary of Unison has similar concerns, “Care can be tough, emotionally exhausting, highly skilled work. But it’s staff are also underpaid, poorly treated and undervalued."

What Existing Staff Tell Us

I endorse these sentiments, it is paramount that staff receive the real Living Wage and the government should not take advantage of the goodwill in the sector.

They do not, however, reflect the fact that there are many, many people who work in the sector who have been present in one locality for many years and would not work anywhere else.

These Carers want to be heard too and want the public to share in the very positive aspects of their work as well as the disadvantages.

They want to inspire, promote and encourage caring, compassionate people from all walks of life who want to make a difference, to be open minded and seriously consider social care as a viable occupation.

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The Young Disabled

The dilemma centres around the lack of support available for our ageing society but actually, the vacuum of carers also affects many other vulnerable groups in the UK.

One of these groups are some young adults with Autism and Learning Disabilities.

These men and women may be physically fit but lack the mental capacity to live independently and require around the clock Care.

I speak as a parent of a man with Autism and a Learning Disability, who lives in a supported living house and who has worked with people on the autistic spectrum and studied the subject extensively.

Staff who are working with my son have expressed how the rewards can outweigh the frustrations, “I know I could be earning more stacking shelves in Aldi but the joy I get from seeing the happiness in the men’s eyes when I come on shift, well you just can’t compare.

Yes, it can be a very difficult, challenging job and I often think I could be doing something easier.

But now that I know and understand the men so well and they know me, I know that I am making a difference in their lives and that means so much to know they are happy."

Valuing Staff And Those They Care For

If staff are not valued by the government, then I believe the people they care for are not valued either, it becomes a perpetuating concept.

Appreciating and acknowledging individuals for who they are and others for the vital role they play I feel is the essence of the Care Sector.

I want existing and new staff to know that actually, when people on the autistic spectrum are supported and understood in a nurturing, Autism friendly environment, they and their families will value them unreservedly.

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Career Progression. Or Not In Some Cases

I agree that the role should have a more robust career progression and considered to be skilled profession with better prospects for those carers who want this path.

However, this journey is not for everyone.

I know excellent staff that would balk at the prospect and in fact would be such a loss to those they support if they were to go into a management role.

So, these individuals must be encouraged and motivated too, as they are central in the lives of those they support with autism and learning disabilities particularly when you consider that constancy and continuity are key to their well-being.

Every moment spent with a person with Autism is a learning opportunity in itself.

Basic But Fundamental Knowledge About Autism

Bearing that in mind, if nothing else, I consider a knowledge of ‘autistic thinking’ and ‘autism friendly environment’ is essential before an individual embarks upon such a role.

However, do not let that that be a deterrent to becoming a Carer of these individuals, there are many excellent podcasts and literature on the subject. Particularly inspiring in a uncomplicated and effortless way are those of Dr Peter Vermeulen whose heartfelt lectures explores what is really important in the lives of people on the autistic spectrum and that is trying to increase their levels of happiness and allowing them to thrive.

He explores scientific concepts about autism and translates them into everyday narratives that allows the carer to understand the needs of individuals with Autism and build up good relationships.

Autism Friendly Environment

He considers that liberating people on the autistic spectrum from the tethers of a life that is not theirs and instead to embrace their uniqueness and Autism.

Certainly, to attempt to increase their independence and resilience but when the time is right, when they feel safe, secure and nurtured within an ‘Autism friendly environment’.

A place where they belong and first and foremost is predictable. It may appear that I speak about individuals on the Autistic spectrum as if they all have the same characteristics and yes there are definite traits which are apparent and are particularly important for diagnostic purposes.

However, they are individuals like the rest of the population and should be treated as such and like everyone else.

That is why focusing on the individual is paramount to their well-being and if the person you support are happy and fulfilled, so are the staff and a job that can be challenging can become easier and the rewards are boundless.

Are People On The Autistic Spectrum Very Different From Us?

The answer is no, they are not! An Autistic brain is 90% the same as a neurotypical brain and that is why put simply and generally on the whole, what gives us positive feelings will be the same for people on the autistic spectrum, we are not much different.

As a carer look for what we share, from neurodiversity to neuro-harmony.

This neuro-harmony is certainly not always apparent because people on the autistic spectrum do not communicate or socially interact the same as neurotypical individuals but research tells us that the need to belong and be liked is universal.

Also, the need to lead a meaningful life, particularly how their existence connects with others and to be aware of what they mean to others.

This facet of their lives is often forgotten in the scramble to inform carers of the challenging behaviour that may exist and how to manage it.

Obviously, knowledge of this aspect of a person’s life is vital to the health and well being of the carer but recognition that the avoidance of challenging behaviour in an individual with ASD should take precedence over the promotion of their happiness is suggested to be counterproductive.

Vermeulen believes that emphasis on abilities and positive reinforcement rather than disability is key and engenders the positive emotions like pride.

I was once told by General Nurses on a general ward when we were discussing secondary care for adults with learning disabilities that they would not be happy to care for these individuals as they had not had the ‘training.'

Whilst I, a retired nurse myself, conceded that specific training and support for an individual was necessary for those with individual complex needs, what adults with a learning disability needed from them was the same as they gave every other patient.

That is, patience, kindness, support, compassion and care.

Autism And Happiness

Formerly it was considered that someone with autistic spectrum disorder (ASD) could only be happy if they lived independently.

However, Vermeulen (2014) discovered that independence was not the key to people with ASD living a meaningful and happy existence.

He found that due to the high levels of anxiety and depression often associated with ASD, in many circumstances he found many of the autistic adults he found living independently were very unhappy and stressed.

Subsequently, he found many, like my son who live in supported living environments to be very happy, as long as they are cared forin a predictable, nurturing, autism friendly environment by people who understand and value them too.

Learning New Skills

Once the individual with ASD feels safe, nurtured and has a sense of belonging, they can then be challenged to learn new skills and be supported to develop resilience.

This new phase of being challenged, should not be a priority and should only be considered when the time is right and the individual is thriving.

They are now considered to perhaps be ready and prepared for this new phase of their lives, (Vermeulen, 2015).

Social Skills

It is believed that people with ASD have context blindness.

That is why some basic knowledge of ‘autistic thinking’ is necessary to care and support for an individual on the spectrum.

Therefore, Vermeulen believes that social skills should only be taught ‘in context’ and at the right time and in the appropriate situation.

Random teaching of these skills can once again lead to confusion, distress and challenging behaviour.

For example, teaching what to pack for a holiday, it has to be in context, where, when, weather etc.

Greetings to friends and family can be very different from giving them to people in the street and personally has caused many issues due to the inappropriateness.

How Simply You Could Make A Difference To The Lives Of Someone With ASD

In essence:

• Be predictable

• Continuity is vital

• Provide an autism friendly environment ( a place where the individuals feel safe, secure, nurtured, valued and understood)

• Explore what things that make them happy and what gives them meaning to their life and allows them to thrive

• This can be simple things like their music, films, outings, activities, seeing family

• Remember things that give the neurotypical person joy is often the same as people with autism

• We all feel the need to belong and feel connected and this can include boundaries

• Only when this is achieved, can the person then be encouraged out of their comfort zone to learn new skills

• These skills should be taught in context and not randomly

• Be clear in what you say so there are no misunderstandings. No ambiguities. Context blindness experienced by individuals with ASD can result in so much confusion and distress

• Be patient and kind as processing information can be delayed. If too much information is given too quickly, they could still be processing the information/request/question from a considerable time previously

If this has inspired you to think that you could share your life with a person with Autism and a Learning Disability and enhance their life immeasurably, they would love to have you. They are not interested if you are academically minded and want career progression or not, they just want people to care for them who will be kind and compassionate and understand the basics of the ‘Autism friendly environment’ and ‘Autistic thinking’. It undoubtedly can be very hard work and underpaid at the moment, the rewards can be limitless.

About the author

I’m a 63 year old wife, mother and grandmother and live in Swansea. I worked for the NHS as a Registered Nurse and Midwife for over 41 years and retired 3 years ago. I have since completed a MSc in autism and related conditions and now provide therapy to young adults on the autistic spectrum and train other therapists.

    • Mat Martin
    • Aubrey Hollebon
    • Richard Gill
    • Matt Farrah
  • 0
  • 1879

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