Rebecca Duffus is an Advisory Teacher working with students and educators in mainstream and specialist schools, plus local council and education services. Here, Rebecca discusses the importance of supporting young people to understand their autistic identity.

Research shows that having a positive understanding of your autistic identity is an indicator of higher self-esteem and wellbeing as an adult.  (Corden, Brewer & Cage, 2021 and Cooper, Smith, & Russell, 2017). Yet, when do we teach this?  
 
So often, autistic young people are told to stop stimming, taught neurotypical ‘social skills’ and disciplined because of characteristics directly related to their autistic identity.  We need to be actively promoting autistic pride and creating communities where autistic young people can understand their strengths and have their needs catered for.   

What is autistic identity?

Many autistic individuals discuss the term ‘autistic identification’ as affirming and valid, in place of ‘diagnosis’, which is steeped in medicalised language (and often difficult to access) (Sandland, 2022).  Referring to autistic identity means an individual can acknowledge all the parts that make up their identity as a whole, and the core autistic characteristics that are integral to who they are. 

There is also strength and solace in a shared identity.  Much of what has been shown to increase wellbeing and reduce anxiety is finding your place in a community of like-minded people, such as with other autistic or neurodivergent folk.  

However, so often I will meet a young person who is at crisis point, and ask the team around them if they have an understanding of their autistic identity, to be told ‘No’. They may have been told about their diagnosis but been given little support to understand what this means, nor had the opportunity to meet other autistic young people, therefore being left feeling isolated, which can also impact their mental health.

What can we do to increase understanding of autistic identity in young people?

When a young person gets a diagnosis, the parents may be offered parent programmes, and the school may be offered training, but what does the actual autistic person get? In many cases, young people are not given the opportunity to explore their autistic identity. In an ideal world, a young person would be aware of autism at the start of their autism assessment process and then be able to build their understanding on this topic gradually and over time, with the support of understanding adults.  

It is never too late to support a young person in developing a better sense of self. I have worked for a number of years doing just this, through clearly structured sessions, together creating a personalised book all about them. The Autism, Identity and Me Workbook for young people was created to become the individual’s unique story, using visual prompts to positively explore their personality and interests, feelings of difference and what this means to them. The book also features other autistic individuals, providing peer representation, and a template toolkit.

When to have these conversations? 

Children have different rates of cognitive development, and ‘identity’ is an abstract concept that can be challenging. Many children will start to notice differences between themselves and their peers and this often shows they are ready to have these discussions, but some children, won’t ever talk about this. 

Claire Sainsbury states ‘any child who is old enough to understand a simple explanation…. is old enough’ (Sainsbury, 2010). Likewise, research has found that when children know nothing about their diagnosis, they can have a very negative perception of themselves (Miller, 2015 and Punshon et al 2009). 

Who is best placed to have these conversations?

If you are the young person’s parent or carer, it is likely that you will have your own thoughts and feelings about this whole process. You may have battled for years to try and get an autism assessment or are carrying the weight of comments from ‘well-meaning’ family members or professionals. There may be layers of guilt or worry over whether you are doing the best for your child. I have worked with many, many families over the years and I can tell you this is all ‘normal’, whatever that means! 

Remember our emotions are often contagious: if we are feeling highly anxious, those around us may well mirror these feelings or behaviours. Always consider whose needs you are meeting - if you are doing this because you feel you ought to, but really don’t feel prepared - it might be best to let someone else take the lead (perhaps someone from school), while you access support and develop your own understanding of autism. The Autism, Identity and Me Guidebook explores this in detail and could be a good starting point. 

It is important that the supporting adult is able to keep calm, give enough processing time and speak about autism very positively.

The role of the chosen adult should be: 

• a reassuring presence (with reduced verbal input) 
• to support with processing (providing additional visual tools or methods that work for that young person) 
• to provide examples to help the young person identify with the features discussed. 

If you are a professional leading these conversations (in advance of the session), you should start planning and information gathering alongside parents. The resources section of the Guidebook has tools which can be used in an informal meeting with parents/carers and key adults.

Top tips to consider:

• Choose the right time: if the young person is absorbed in their interests, or
• focused on something that has happened, it may not be the right time. 
• Allow processing time
• Don't talk too much
• Use the young person’s name to cue them in
• Sit side by side
• Consider the environment: would they prefer to be somewhere familiar? Think about the sensory input such as lighting and sounds.  
• Use visuals to support complex concepts
• Use specialist interests to engage your child/young person in the topics
• Have a plan for follow up questions : It’s OK to ‘park’ the question or give the young person a kind of ‘holding message’ - better this than to give a rushed answer that they later find confusing or unsettling.  
• Adapt your plan for your young person: consider concentration and processing times. Some young people may prefer to sit down for an hour, others may want short 10-minute bursts of information. Be flexible!

Giving young people the space and time to explore and embrace their autistic identity, in a way that is positive and empowering, is essential for their sense of self and belonging. 

Further information

• Autism, Identity and Me: A Practical Workbook and Parent/Professional Guide to Empower Autistic Children and Young People Aged 10+