Since I began to “come out” as a young adult with Asperger’s Syndrome I have been able to specify what extra support I require in the workplace, at university and in various social situations. On the one hand this has been extremely liberating. However, I have also felt paralyzed with fear. My worry is that one of the people I trust enough to explain my disability to will respond with a comment like: ‘why should we help you? You’re the one with the disability, not us!’ Although this hasn’t happened yet, it’s something I have spent a long time trying to formulate an answer to. Here it is:
Firstly, I would like to specify that many people on the autism spectrum do not consider themselves as disabled. Rather, they see themselves as having a developmental difference. This different way of thinking does affect their ability to socialise, but most of the difficulties they face come from neurotypicals refusing to adapt to a different way of thinking, rather than the way of thinking itself. ‘If they (normal people) would just make the round hole a little bigger we square pegs could easily fit in without damage to anyone’ (Worton, 2008). Personally I identify as disabled, however I feel that the detrimental effects of my disability would become almost unnoticeable if society could be less judgemental, and more adaptive to different ways of thinking. Secondly, Asperger’s is a social awareness and communications disability. By its very nature, communication is a two way street. If two people fail to communicate, they are both responsible for that failure.
I was recently chatting to a social worker about my work with Bradford Autism Support, and explained that I was struggling to communicate with the high support group. Most of these children are non-verbal and when I spoke to them they often ignored me completely or gestured for me to move backwards, giving them more space. One child in particular was very cuddly, but seemed just as content on his own as he did when he was in my arms. I couldn’t help feeling he viewed me as a piece of comfy furniture rather than a human being. I explained all this. The social worker suggested that I was trying hard, and it seemed like it was the children who were struggling to communicate with me.
No. Communication is a two way street. In that situation I was just as responsible for our ability to connect as the children were. In fact, given that this was an autism friendly environment and the children I was caring for are more severely impaired than I am, I would argue that it was my responsibility to enable communication. I tried harder. By the end of the summer play scheme I was able to communicate with non- verbal children through basic hand gestures and high fives. Although he couldn’t speak to me, one child in particular grabbed me by the hand and dragged me away when he wanted to be played with. As for the cuddly boy… well, he started giving me direct eye contact and smiling when I entered the room. I was more than a piece of soft furniture to him.
Maintaining friendships and relationships with people on the autism spectrum can be very challenging, but it’s also incredibly rewarding. The following is a short list of tips for communicating with children and adults on the autism spectrum. If you know nothing about autism I strongly suggest that you do some more reading and research before putting the tips into action.
High Support or Classic Autism
- Start chatting to the autistic person from a distance so they don’t feel crowded. If they seem comfortable with your presence or are ignoring you completely, you can move a little closer.
- Do not force eye contact. In the animal kingdom direct eye contact is only given when one animal is challenging another to fight- this knowledge is embedded in our limbic system. Autistic people often have less control over the limbic system; therefore eye contact can trigger a fight or flight response, causing extreme distress. Let them look at you in their own time.
- Talk in short, simple sentences. For example: ‘Charlie? Drink?’ instead of ‘Hello Charlie, I was wondering if you would like something to drink?’ Although autism has no effect on a person’s IQ, it can be hard for people with high support autism to focus on speech and take in the meaning of a sentence.
- Do not engage in physical contact unless the autistic person initiates it. Some people on the autism spectrum can’t stand being touched. Others love physical contact, but might not understand social boundaries (for example, an autistic child whom I had never met before once rushed up and hugged me before even introducing herself). Hard touch is always a safer bet than soft touch, for example: high five them instead of stroking their hair.
- Observe body language. Non-verbal autistics might try to communicate with you through a series of gestures, such as miming eating and pointing to the fridge if they are hungry.
- Keep yourself safe. Some people with high support autism are prone to aggressive behaviour . If this is the case, it is the responsibility of the parent or carer to warn you before you meet them, as well as telling you about any behaviour or situations that might trigger an outburst. If they start being violent, initiate a verbal warning and try to isolate them so they cannot harm you or anyone else. Always be forgiving. Many autistic people struggle with empathy and may not even be aware that they are causing you pain. Many people with high support autism (especially those who are non- verbal) experience extreme frustration at their impaired communication and this can cause them to lash out. Try to put yourself in their shoes before you judge them.
High Functioning Autism and Asperger’s Syndrome
- Start chatting to them from a distance. Eye contact and personal space can also be an issue for someone with Asperger’s syndrome. It might be worth asking for permission before sitting down next to them. If they so no, don’t be offended, they just need their space. Try leaving an empty chair between you and the autistic person, and initiate conversation from there.
- Ask them about a specific interest. Autistic people often have very narrow or specific interests which they are very passionate about, and the easiest way to engage them in conversation is to bring up said interest. (For example: if you see an autistic person reading, ask them what their favourite book is and why). If they are hesitant to respond, try asking more specific questions. If they respond with a very long monologue about their interests, barely pausing for breath and not allowing you to get a word in edgeways, try to steer the conversation away from this topic or ask another question. When you interrupt them, do it gently. It is unlikely that the autistic person is being deliberately rude; they are simply unable to interpret your facial expression and vocal tone. They might not be aware that the conversation is boring you.
- Don’t rely on them to interpret how you’re feeling. I’ve been in many situations where a friend has expected me to interpret from their body language, facial expression and vocal tone that they are upset, then become very angry when I failed to do so. It’s not that I don’t care. I am more than happy to offer comfort and talk over a problem; I simply don’t have the skills necessary to interpret a person’s mood through body language alone. Few people on the autism spectrum do.
- If an autistic person does something to offend you, try to explain what they have done and why this behaviour is inappropriate as soon as you can. Do so gently and without raising your voice. It is unlikely that they were being deliberately cruel. Since autistic people struggle with empathy, reading emotion and understanding social situations, they might not know they have offended you until you tell them.
- Don’t use sarcasm. Autistic people are unlikely to understand sarcasm because they think very literally and find it difficult to interpret a person’s face, body language and vocal tone. When someone uses sarcasm and I don’t understand, I am often left feeling embarrassed, or even that I have been deliberately tricked and made to look a fool by the person who was being sarcastic.
- Always ask before you initiate physical contact. A person with high functioning autism or Asperger’s will generally tell you, or step back if they don’t want to be touched. If this is the case, don’t be offended. It is likely that they don’t want to be touched because their body is feeling hyper sensitive or they have a general aversion to physical contact. Not because they don’t like you.
- Give it time. It can take autistic people a long time to get used to the presence of a new friend, carer or work colleague. For me, it’s usually about three years before I feel totally comfortable with that person. This doesn’t mean I can’t enjoy socialising or have meaningful friendships and relationships. I just need to be patient and allow myself time to recuperate after social activity.