Removing the cliff edge to adulthood: looking beyond education

Being an adult isn’t all doom and gloom – bills, work, responsibilities, and cleaning. There are many things about ‘adulting’ that are great, and which we take for granted. Being able to pick your own clothes in a morning is one such example of the independence we gain as an adult. As an adult you have the ability to change your circumstances and seek new opportunities.

When we reach adulthood, we are empowered to pick who we spend time with and how often, deciding our relationships and friendships for ourselves. If you really want chocolate cake for breakfast you can, because it is your choice. Experience will tell us it’s not a great idea, but being an adult gives us that perspective. If you are autistic, or have additional needs, it is likely you have barriers in place stopping you from being able to fully embrace being an adult like your peers who aren’t autistic.

Reasons for the cliff edge

There are many reasons why autistic children, young people and their families have this feeling or experience. Every person will have their own experience of growing older and reaching adulthood. However, there are several reasons why this specific transition is more challenging than others:

A significant change:

This change is huge! Leaving education is one of the biggest life changes in a person’s life. The structures, scaffolding, people and places a person gains support and comfort from are likely to change.

Diagnosis:

When a person got their autism diagnosis has an impact on the type of support they receive throughout their childhood. A late diagnosis might mean a person has less time in touch with provision and support focused on building resilience and strategies to prepare for life beyond school or college.

Funding:

Funding models for adults are different to those aged 0-25 years. Many children and young people with significant barriers to education will be supported from an Education, Health and Care Plan. However, these cease at 25 or before for some young people.  Funding post-EHCPs looks different and can be confusing.

Provision:

Education provision is quite standardised, Monday to Friday, 9am to 3.30pm with school holidays (with some exceptions). Support ‘looks’ different in adult life to what children or young people receive in education. It is less standardised and can vary hugely in the offer available. Support may come in the form of social clubs, vocational programmes and care provisions rather than a structured education provision.

Geography:

Where you live is a key element to a person’s experience of leaving school or college. Your choices vary from area to area and will be limited to what is available where you are.

Individual circumstances:

“Disadvantaged young people and children living in poverty have been hardest hit by COVID-19 and could face consequences that affect them for years. Around 4.3 million children – almost one third of children in the UK – were living in poverty as of March 2020. This is an increase of around 700,000, or 3.7 percentage points, from March 2012”. (State of the nation 2021: social mobility and the pandemic, July 2021)

Our own individual circumstances, background, demographic and network all effect our opportunities and life outcomes.

Lifelong learning not always a priority:

Lifelong learning is the opportunity and choice to continue learning formally, but also the acknowledgment that we continue to learn informally through our lived experiences. Often, education is seen to end once a child or young person leaves school or college. This will limit and hinder the lifelong opportunities of that individual.

Removing the cliff edge

It isn’t possible to remove the ‘change’ that comes with transitioning from educational services to adult or care services. Accepting this change is often the first step to ensuring a young person has the best opportunities as an adult. Once the change has been accepted, planning, and thinking ahead can begin.

Keep a diary, screen shots on your phone or just a Word document on a computer to store key information about preparing for those next steps. Whether you’re a parent, an autistic person yourself or a professional in a supporting role, keeping information on the following areas will ensure planning ahead is much easier:

• Information of key professionals in adult services at your local authority / local government – for example, if the young person has a social worker, knowing how to contact the adult team will be important.
• Local provisions for adults with similar barriers or needs, such as groups, clubs, services.
• Information on supported / independent living options, and the time scales for implementation of any service(s).
• Researching benefits for adults with disabilities and other support available.
• Information on carer assessments and adult social care.
• Engaging with your local networks, either through current organisations you know or through social media.

Support in decision-making

The Mental Capacity Act

The MCA is in place to protect people from harm and abuse. It is based on five guiding principles:

Principle 1 – A presumption of capacity.

Principle 2 – The right to be supported when making decisions.

Principle 3 – An unwise decision cannot be seen as a wrong decision.

Principle 4 – Best interests must be at the heart of all decision making.

Principle 5 – Any intervention must be with the least restriction possible.

Remember, one of the benefits and pleasures of being an adult is you get to make choices yourself and be empowered to do so. It is vital people with barriers or additional needs are supported as much as possible in their own informed choice making. There are many things we can do to support this.

• Use an Inclusive Communication (or Total Communication) approach – make use of all the tools and knowledge you have in communicating effectively.
• If a person has a preferred method of communication, this should be respected and used.
• Meeting more than once to confirm a choice or to give people time and space to think.
• Our environment has a huge impact on our wellbeing, so meeting in a preferred location for the individual is really important for them to feel comfortable and at ease.
• Assistance from an advocate is something that can support decision making.
• If a person makes continuous decisions that puts them at risk, further investigation or support might be needed – though remember, just because you might not agree with a decision does not mean the person does not have capacity.
• Never assume someone cannot make a decision.
• Use the network to achieve the best way of supporting someone to make a decision.

Deputyship

A deputy is usually a person who is over 18 and a close relative or friend of the person who needs help making decisions. A person can become someone’s deputy if they lack mental capacity – this means they cannot make a decision for themselves at the time it needs to be made. They may be able to make decisions for themselves at certain times.

People may lack capacity for many reasons, including because they have severe learning disabilities. A deputy is authorised by the Court of Protection to make decisions on their behalf.

There are two types of deputy:

• Property and financial affairs
• Personal welfare

Information on becoming a deputy can be found at: https://www.gov.uk/become-deputy

More information and further resources:

• BeyondAutism Employability Toolkit
• NDTi – Preparing for Adulthood resources
• uk: Deputies: make decisions for someone who lacks capacity
• Your own Local Offer
• Council for Disabled Children: Preparing for Adulthood
• ASDAN: Employability programmes and qualifications
• Our previous Lunch and Learns, available on our website and YouTube channel

References:

Department for Education and Department of Health (2015) Special educational needs and disability code of practice: 0 to 25 years.

Social Mobility Commission (2021). State of the nation 2021: Social mobility and the pandemic.

Waddell, G., & Burton, A. K. (2006). Is Work Good for Your Health and Well-Being? London: TSO.