When Adam describes what Autism is – and he has been explaining it a lot since he started AsIAm to raise awareness about the condition – he usually compares it to situations that everyone can relate to. Situations where we all can get overwhelmed, feel social anxiety, feel different, or just dislike certain things that others seem to enjoy.
Imagine you are dropped in the middle of Beijing train station, all by yourself. Thousands of people around you. You feel overwhelmed by it because you don’t know the country, the smells, the rules, you don’t understand anyone, it’s noisy, it’s overwhelming. Then you’re trying to find your way out, trying to ask someone for the way but you can’t read the person’s facial expression, you have learned some Chinese, but you can’t keep up with the person’s dialect, you’re lost.
Once you’ve found a way you will always take that one way, you don’t want to risk getting lost again by finding shortcuts. The routine gives you comfort and an approach that works for you, just as people taking the time to explain things clearly and in general respecting your difference and your need to do some things differently can have a huge impact.
It’s an extreme example but this gives an insight to the daily life of a person with Autism.
Adam has one big vision: Bringing some empathy and structure to the train station that is our society. He would like to live in a society where the whole community takes responsibility to build an Autism-friendly Ireland. He believes this is not just good for people with Autism but it allows people with Autism to make a contribution to society in accordance with their interests, abilities and personal potential. This way, everyone benefits. He has started building this type of society with his organisation, AsIAm, providing a voice for people with Autism through their website and using this voice to educate society to gain a greater understanding of Autism.
The first stop on his mission: Schools. AsIAm.ie has developed a schools programme aimed at making it easier to go to school with Autism, by educating peers to have a greater understanding and respect for those with the condition. The workshop is 90 minutes long, delivered by people with personal experience of Autism and aimed at providing practical information to students and challenging them to get involved in becoming Autism friendly.
Lesson 1: Break the biggest barrier for an Autism friendly school first: The fears of teachers and parents.
The National Disability Authority publishes survey findings on societal attitudes towards people with Disabilities every 5 years, in 2006 they asked: Would you have difficulty with your child going to school with children with an intellectual disability? 8% said yes. In 2011, 21% answered yes. One of the reasons put forward for this increase was the inclusion of the word ‘Autism’ for the first time, which highlights the lack of understanding, knowledge and empathy towards the condition among a significant percentage of the population
I’ve heard from parents who have a child with Autism that isn’t allowed to play with another kid because the parents are afraid their child could ‘˜pick up behaviours’. That’s what happens if you don’t talk about a topic, you create stigma. We frequently are asked about the benefits of discussing Autism and the risks involved; people are still afraid but we must talk about the condition if we are to change attitudes and, by extension, Ireland.
Lesson 2: Young people are very open and honest, we should take advantage of this!
Around 1 in 100 people in Ireland have Autism, so it’s very likely that each of us knows someone with Autism and that in every school in Ireland there will be some students with Autism, yet often it is something we don’t discuss enough with other students.
In our workshops we see how curious young people actually are and that they have less prejudices than adults. They are not afraid to ask questions that might seem rude about the things they see and don’t understand, like: “Why do people with Autism do this?” or “There is a guy who does this thing and I don’t understand why”.
Many adults can be reluctant to ask about certain things or to ask honest questions because they worry about coming across as rude, but in actual fact it would be much better if people, with respect, asked questions out straight and received honest answers instead of leaving an information vacuum for people interacting all the time with their peers on the Spectrum.
What makes it so difficult to talk about it is the fact that you can’t really see it and that it’s a spectrum, where no two people are the same (much like the rest of the population if you think about it!).
We need to build an understanding for the differences which many people with Autism have and there is no better place to start than with young people, as they can bring this knowledge forward in their careers, community and family life in the future.
Lesson 3: We can make a choice to build empathy instead of sympathy
50% of children with Autism are being bullied, 80% are long-term unemployed. This has nothing to do with the condition but with how society reacts to it.
For example, people with Autism may have some unusual habits or behaviours. “Stimming” is a good example of this. People with Autism are often very stimulated by their surroundings, experience anxiety and can become enthralled in their own thoughts, this can lead to the mind becoming overwhelmed and the brains way of dealing with this can be a repetitive action, like flapping the hands, running on tip toes or other such movements.
This is a really important way of calming down and re-focusing, I often compare it to the way a computer uses its fan to avoid over-heating. However people often get stared at or taunted when doing this, because the public just sees a person acting ‘strangely’ and casts its own judgement.
For example, when I get off the Dart in the morning after a 1-hour ride, my brain works very quickly and I subconsciously start running very quickly on tiptoes, sometimes in a circle. I will also do this several times during the working day and in my spare time, and it allows me to cool back down. However when people don’t recognise it, they don’t always understand it and many people with Autism experience very negative attention for engaging in something that they often don’t control at all.
Once all kids in school learn more about these things, they’ll be able to stand up for someone who is being bullied for these reasons.
What can also work very well is the buddy system, where older kids, typically the leader figures in the school, support a kid with Autism. Both students can learn so much from each other and develop accordingly. It’s a real game changer for both their lives.
Lesson 4: Why don’t we allow more room for being different?
There are easy ways to help people understand what it feels like to have Autism and to build that kind of empathy. In the workshop we always start by putting it all in the context of differences.
Not everyone has a personal experience of Autism but everyone has a personal experience of being different in some way because we are all different. We describe Autism as a collection of difference, some presenting challenges, others strengths, while they may be different to other people’s differences it is a very good starting point to discussion as it enables people to empathise.
One class translated that very well into action and after a workshop came up with the idea of creating badges with a red and green side. All the kids would wear them and turn the badge to red if they didn’t want to talk to someone. Respecting a person with Autism who may want to talk to others but not have the confidence or who may just need space after, for example, a long class or in a noisy environment, and also benefiting a person who is just having a bad day or would enjoy some quiet time!
Lesson 5: We should all watch our language
Language can be very destructive when it comes to how people sometimes refer to those on the Autism Spectrum. When people see someone who is acting remotely different, their go-to-word is ‘weirdo’, ‘she’s weird’, ‘he’s odd’, that’s what becomes that person’s label and it’s where the isolation begins. Adults pass these words on to their children and the damage is done. Often what a person means by ‘weirdo’ is in fact ‘different’ which a) there is nothing wrong with and b) can often result in people with Autism experiencing dreadful isolation.
Language can also be very constructive. Though we can talk about people’s abilities, we can use it to refer respectfully to each other and we can use it to explain Autism. It really is up to us.
If you believe that we can all benefit from a more Autism friendly society and school environment, you can sign up your school for the AsIAm workshop and learn more about how it works. Visit AsIAm to find get more advice on the topic for environments like public events, restaurants or public transport.