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Talking To Young People About Autism

Important: know that it is normal to hate/ reject your diagnosis at first. Why?

 

The internet:

Online, autism is typically described as a negative thing. The media shows autism as a disorder and something to be feared. The term “autistic” is used as an insult in quite a lot in online communities/ spaces (e.g. in online gaming).

 

Feeling alien:

Autistic people often already know they are different before they are diagnosed, but don’t have a reason why. When you are expected to be like everyone else but struggle with being like them, it is common to see yourself as “wrong” or “broken”. 

 

In this respect, being told you are autistic can be quite empowering. Rather than feeling different from everyone else, it helps you to know that there are millions of people who think in a similar way that you do. 

 

But if you are picked on, bullied, mistreated and more without knowing why, you learn to blame yourself for your differences. Then when you eventually get a diagnosis, it is common to blame it all on autism.

 

In this respect, it is really helpful to start open conversations about autism before diagnosis, so it is less likely to be seen as a negative thing.

 

Diagnosis during crisis:

Most autistic people are only referred for a diagnosis when they are struggling or at crisis point. People think this crisis point, and how you act when you are struggling, is Autism. But actually at this point you are Autistic and have co-occurring Anxiety, Depression or Trauma. 

 

It is very difficult to come to terms with an autism diagnosis at a point when you are immensely struggling. You might think Autism means you will always have this struggle but the crisis is usually caused by masking your Autistic traits or not understanding about Autism and yourself. Understand that Autism and Crisis are not the same thing and do not have to co-exist.


The additional difficulty here is that people often don’t explain what autism is, so it is very easy to incorrectly see intense anxiety, trauma, anger and more as part of autism, when they are a result of lack of the right support/ understanding. 


People should be able to learn about autism before they start to struggle, so they aren’t likely to view it so negatively at the point of diagnosis

 

Autism acceptance is really important for the long term wellbeing of autistic people, so tackling these barriers is crucial. One way to do this is by talking to autistic young people about autism and doing it in a positive way. 


So, how should you talk about autism?

 

Talk about it before diagnosis - to help normalise the idea of being autistic:

 

"People have different skin colours, hair colours, eye colours and more. This is part of diversity.

 

We have differences in the ways our brains function too. This is part of Neurodiversity.

 

Whilst everyone's brains are different, around 15-20% of people are Neurodivergent. This means that our brains work in ways that are very different to societal standards of 'normal'.

Neurodivergence include: Autism, ADHD, OCD, Dyspraxia and Tourette's Syndrome.

 

15-20% of people, is A LOT of people who have brains that are wired differently. 

It is helpful to emphasise this with people so they are not alone, and that being different is a natural, and beautiful part of human variation. 

 

Different perspectives are vital for creativity and innovation. If we were all the same, the world would be much less interesting, and so being different is a beautiful way to be! Being different or neurodivergent compared to others can mean that you can find some things difficult, but if you get support for your difficulties, then your strengths and unique thinking are a true credit to the world."

 

There are a variety of ways to talk to young people about autism and neurodiversity, before the point of diagnosis:


 

Some famous Autistic People:
  • Slushii - Producer/ Artist/ DJ

  • Tom Stoltman - World’s Strongest Man 2022

  • Dan Bull - YouTuber

  • Dan Aykoyd - Comedian, singer, actor, writer (He played Ray Stantz in Ghostbusters)

  • Adam Young - Lead singer, Owl City

  • Albert Einstein

  • Heather Kuzmich - Model

  • Satoshi Tajiri - Creator of Pokémon

  • Matt Haig - Author 

  • Anne Hegarty - Chaser from The Chase TV Show

  • Anthony Hopkins, Actor

  • Tim Burton, Movie Director



You should talk about autism in the right way:

 

There are three main attitudes that people tend to have: 

  1. You should try your best to fit in and “be normal”: While people who say this have the right intentions, this is a harmful perspective as the world is set up in a way that isn’t suited to the needs of autistic people. “Fitting in” takes a lot more energy for autistic people and many autistic adults say this is completely unsustainable, leading to high levels of burnout and mental health difficulties. 

  2. “You are so much more than your disability”, “autism is only a part of you and you are so much more than that”: While people have the right intentions here too, it is important to recognise the impact this phrasing has. Autism is the name for the way your brain is wired, which is completely unchangeable. Viewing autism as separate to you can be detrimental to the wellbeing of autistic people as it tailors people towards wanting to “fix” or “cure” themselves.  

  3. “Autism is a superpower”: Some people describe autism as a “super power” that brings huge positives into the world. While autism does bring huge positives into the world, only framing it in a positive light can be dismissive of the challenges/ barriers autistic people face. It is ok to acknowledge that being autistic has challenges (while also recognising that most of the challenges are caused by the environment, rather than autism itself). “Autism doesn’t feel like a super power when I am bullied every day at school”. 

 

Instead, we should talk in a way that is neurodiversity affirming. We believe it is helpful to look at the 5 As of neurodiversity affirming practice, from The Autistic Advocate, when it comes to talking to young people about autism:

 

Authenticity – A feeling of being your genuine self. Being able to act in a way that feels comfortable and happy for you. 

 

Acceptance – A process where you feel validated as the person you are not only by yourself but by others. 

 

Agency – A feeling of control over actions and their consequences in your day to day life. 

 

Autonomy – A state of being self-directed, independent, and free. Being able to act on your ideas and wants. 

 

Advocacy – To speak for yourself, communicate what is important to you and your needs or the needs of others.

 

You can read  more about what this means here.

 

When young people understand autism in an affirming way, they can start to externalise some of the difficulties they experience, rather than blaming themselves which often leads to feelings of self hatred and shame.

When autism is talked about in the right way, we hope to see young people switch from trying to hide or reject autism to: 

  • The best: ‘Embracing autism and using their autistic strengths in the best possible way’

  • Second best (and also important): 'I'm stuck with it whether I like it or not so I might as well try and enjoy it’


Be ok with being uncomfortable:




Talking about autism is really difficult at first.

 

People may struggle with talking about it, or it may not have been spoken about for so long that it is really hard to start the discussion. But breaking the ice and starting the conversation is really important to be able to start the journey to understanding and acceptance. 



Often a barrier to talking about it is fear of getting it wrong. Starting the conversation, getting it a bit wrong but opening up the way to future dialogue/ conversations is much better than never talking about it at all. But using the principles in this guide, you are likely to have a great start to the conversation. 

 

It is also ok if a young person has ideas or questions you don’t have the answers to. It is ok to say you will come back later, and one great place for quality information/ responses to difficult questions is the online autistic community and searching for neurodiversity affirming information (as there is also a lot of wrong/ harmful information about autism online).  

 

Share the social model of disability:


Read more about our perspective here.

 

Introduce autistic adults:

 

Just being openly autistic is enough to have a positive impact on wellbeing. Being openly autistic and comfortable can help young people shift towards a feeling of acceptance. 

 

Once the ice has been broken, this is really important/ helpful. Connection with others whose brains work in a similar way to you, is really helpful to have a positive perspective.

Drip feed rather than talking about autism all at once:

 

A one off course or information can be too much. The best way is sharing information is over time.  Consider sharing little blogs, information on famous autistic people, memes and more a bit at a time. 



 


For young people: Resources to see/ autistic people to follow:


Autism Understood:


A website created by and for autistic young people! There is a huuuge amount of content on the site, but a good place to start might be here: https://autismunderstood.co.uk/what-actually-is-autism/





 

Messages from autistic young people:




YouTube Videos:






YouTubers:





TikTokers:





Instagram:



Other epic resources/ people:


A message to all autistic children from Frank Lludwig

 

Autistic science person

 

Understanding the autism spectrum comic

 

Neuroclastic

 

Autistic Not Weird

 

Our Autism Resources Padlet

 

Understanding Monotropism

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