Becoming a Personal Assistant – a guide for autistic people

Personal Assistants are often called a PA. This guide has been written to help autistic people learn more about becoming a Personal Assistant.

Self-directed Support, which is often just called SDS, is designed to be flexible to meet the needs of the person. This is where the money comes from so your employer can pay for your job as a Personal Assistant.

This also means your role as a PA will be flexible.

This guide has been written by professionals that are also autistic. It includes the lived experience of autistic people who are PA employers.

The guide includes the lived experience of PAs that are also autistic too and that have worked for autistic people who are PA employers.

Not all autistic people are the same. This guide aims to capture some of the main things you could experience.

 

What can you help with?

SDS is meant to give the person receiving support quality of life. This means that when it works well, being a PA is more than just making sure a person is washed, has clean clothes and has eaten.

Being a PA will include activities that will help a person lead a full and meaningful life.

For example, this could include:

• Going to the shops together.
• Attending appointments with them.
• Helping visiting family members.
• Helping someone go to the football.
• Help attending a loved one’s grave.
• Help going to art or fitness classes.
• Opening mail or helping with email.

The role of one Personal Assistant will generally be different to another. This is because being a PA is designed around a person’s individual needs and personal goals.

 

What you cannot help with

A PA can be asked to do a wide range of activities.

There are some activities that a PA should not do.

For example, these include:

• Giving medication (unless you are qualified and insured to do this).
• Managing the person’s finances (unless you have been given the legal permission to do this).
• Anything sexual.
• Anything that is illegal.
• Giving medical or legal advice.

If you feel uncomfortable carrying out a request you have been given, it is OK to refuse this, if this falls outside of the role of a PA.

If you are in any doubt about this, you can contact an organisation like the Personal Assistant Network Scotland for advice and guidance.

 

What makes a good PA?

Being a person that has a positive attitude and is kind and honest is a good starting point. This is more important than qualifications.

Treat the person you are working for with the same kindness and respect you would want to be treated with yourself.

Remember, this is not just a job for the person you are helping. Your job helps your employer live a full and meaningful life.

Having a willingness to learn new things is helpful. This will make you better at your job.

Build trust and respect for your employer. This means that both you and your employer are more likely to work well together.

Learning to communicate well and understand your employer is very important for both you and your employer.

Good communication is especially important as your employer is autistic. They will most likely have had some bad past experiences of receiving poor communication and of being misunderstood or ignored.

Ask your employer, do not assume what they want.

 

Your rights and boundaries

As a PA you have some legal rights with your employer.

These include:

• Paid holiday entitlement and days off.
• Workplace Insurance.
• Safe working environment.
• To be treated with respect.
• Fair and clear disciplinary process.
• Fair notice of ending employment.

There is lots of information in this Handbook about your rights as an employee. Take a look at the other pages to find out more.

 

Your employer’s rights and boundaries

Your employer has legal rights too.

These include:

• Giving you an extended probation period of up to a year to see what you are like as a PA.
• To be treated with respect.
• Fair and clear disciplinary process.
• Fair notice of ending employment.
• Fair notice of holidays and days off.
• Confidentiality about their situation and their home.
• To get a new PVG background check on you to see your suitability for working as a PA.

 

Your responsibilities as an employee

As a PA you have some responsibilities to your employer. Your job as a PA can be providing essential care for your employer to live their life.

Some of these responsibilities include:

• Request and agree together holidays and days off with your employer. When possible, unless it is an emergency, this should be a minimum of 2-4 weeks in advance. This allows for replacement PA cover to be arranged for when you are not there.
• Turn up on time when you said you will.
• Give enough advance notice if you are sick, so alternative PA support for your employer can be arranged by them.

 

What to expect

This can be an incredibly rewarding job, as you are helping someone to lead a full and enjoyable life.

It can also be challenging sometimes.

Building trust and understanding between you and your employer is really important.

You will be working from a person’s home much of the time. This needs respect, confidentiality, and sensitivity.

When being a PA works well, it is more than just a job. You might be the main person your employer has contact with all week.

There is a balance between building a genuine connection with your employer and having healthy professional boundaries. This is good for you and your employer. Remember, they are still your boss.

It is important for you to look after your own physical and mental wellbeing too. This will help you to be a better Personal Assistant.

 

Where to go if things go wrong?

Sometimes things do not go according to plan.

Ideally, you should first try to work out any difficulties with your employer. Wait until you are both calm to do this. Make sure it is at a time that suits you both too.

If you cannot sort things out between you there are organisations that can help you.

You can contact the Personal Assistant Network Scotland for advice. Visit there website here.

You can also contact the Advisory, Conciliation and Arbitration Service (ACAS), who advise employees on employment issues. Visit their website here.

 

Working for autistic people

As a Personal Assistant you may choose to work for all types of people. You may choose to work for another autistic person.

All autistic people are individual people with their own unique differences. What is seen as a positive experience for one autistic person might be a negative experience for another autistic person. Always ask the person, do not assume.

Your employer’s needs might vary from day to day. This is perfectly normal. What might be OK one day might not be on another day. For example, this might include touching, noises, or food choices.

Communication can take many different forms. For some people this is speaking. It could also be using text or writing. It could be through signs or gestures. It could be a combination of all of these on different days.

Some people have specially adapted methods of communicating. It is up to you to learn use this with your employer.

Everything a person does can be communication.

If someone has an emotional response, focus on what they are responding to. Try not to focus on the response itself.

For example, if you touched your employer and they react by shouting or accidentally pushing you, this is not a threat to you directly. The person is doing this to tell you that they do not want to be touched.

You need to learn to understand each other.

The person you are helping might have communication barriers. Part of your job as a PA might be helping them find a way of communicating that works for them and makes them feel understood.

Routine and advance notice of any changes of plan are very important for many autistic people.

Many autistic people have specific sensory needs. This can include a wide range of different things that you might not even consider.

These sensory needs can have a huge negative impact on an autistic person when they are not met. All autistic people have different sensory needs.

Examples of sensory needs for some autistic people might be:

• Fabrics (too soft, too rough, too heavy, too light)
• Food (including textures, colours, crumbs, different foods touching each other on the plate)
• Lighting (too bright)
• Sounds (types of sounds, volume, eating noises, too many sounds at the same time)
• Personal space (too close, direct long eye contact, sitting directly opposite a person, specific seating, unwanted physical contact)
• Not asking if physical contact is OK first, for example hugs, touching or handshakes.

Some autistic people might communicate in a different way or style than you do. This is neither a good nor a bad thing, it is just different.

Most autistic people prefer clear, specific communication.

It is a good idea to avoid saying or doing anything that can be understood in a few different ways. An example of this might be instead of saying “I will be back shortly”, instead be specific by saying “I will be back in 15 minutes”.

If you are autistic yourself, be aware that what you assume is good for you, might not be the same for the autistic person you are supporting.

Studies have shown that communication between autistic people is often much better than between autistic people and non-autistic people. For this reason you may choose to work as a Personal Assistant for another autistic person.

 

Positives of being a PA

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Next steps

You can explore the rest of this Handbook to find out more about being a Personal Assistant.