I’ve been learning a lot about myself over the past year. I have made an effort to be more self aware, so I’ve been noticing more about the things I find difficult, rather just pushing through without thinking about how I could get through better. I’ve been observing my reactions to things, and seeing patterns in my responses to stress, stimulus and overwhelm. It’s been amazing to gain self understanding that helps me live well, and helps me be in the community more instead of hiding at home feeling like I can’t do things.
It hasn’t only been myself I’ve learned about. I’ve learned something about non-autistic people too. I’ve learned that non-autistic people really don’t understand the effort we put in, and what it costs us, to be in their spaces and involved in their activities, and that this is a barrier to inclusion. Now, please don’t read that as a negative judgement if you are a non-autistic person reading this. It’s not at all. It’s an acknowledgement that you can’t truly know what you don’t experience. But, I’d like to try to explain it to you a little bit, because it is definitely possible to gain some insight by listening to the experience of others. I hope that if I tell you my experience it might help you understand the autistic person/s in your life a little better. And I hope that after you have read my thoughts you’ll be challenged to think about inclusion a little differently.
First, I think we need to make sure we are all on the same page regarding what I mean when I say “non-autistic people really don’t understand the effort we put in to be in their spaces and involved in their activities.” What I mean is that most of the physical and social spaces in our society are not put together in ways that support the needs of autistic people. Autistic people are disabled by environments that overwhelm their sensory systems and that demand much from them socially. To help you understand, I will give an example:
I was at a conference recently. The organisers of this conference were wonderful in supporting my needs any time I asked. Before the conference we discussed what I would need to be able to most fully participate in all aspects of the weekend, and they were welcoming and helpful any time I had a question or needed anything. I asked for help with things like needing personal space and quiet time throughout the weekend, and with some dietary requirements, and understanding some social requirements in the context of the conference.
One thing I didn’t anticipate was the getting to know you parts. I didn’t anticipate it because it’s been so long since I attended anything like this conference, and even longer since I’ve been in a room of 40 strangers who I’d need to get to know quite quickly. I certainly didn’t think of asking them to please not ask me to participate in any sort of large group getting to know you ice breaker type of activity, and before I did this particular one I wouldn’t have been able to articulate why exactly I didn’t want to do it… but I can now.
What we did was stand in two lines, each line facing the other, and we were given 2 minutes to talk to the person in front of us to get to know them, then we moved on to the next person in the line. We were standing opposite the person we were meeting, and had a person on each side of us who was also meeting someone. There was a lot of laughter and exclaiming and it seemed like everyone was having a lot of fun getting to know each other.
For me it was close, loud, confusing and overwhelming, and it went on for about half an hour. My sensory system struggled in a few ways:
*I could smell all the people around me (their perfumes, colognes, skin care products, etc.).
*I could feel the slight jostles against my body as people close to me moved about.
*I could hear every word that all 6 to 10 people within the immediate space around me were saying and I had to process the language to pull out of that mess of words just the ones being spoken to me and assemble them into meaningful sentences in my head, and then formulate a response while doing something that resembled socially acceptable looking at the face of the person I was talking with.
*I could hear the noise of the air conditioning whooshing overhead.
*At certain points as I moved along the line I could see bright lights shining directly down onto me, which is distracting and can be physically uncomfortable.
*On top of that, I’d had no warning that I would be required to introduce myself to so many people individually, and to respond the them introducing themselves, so I hadn’t prepared any scripts to help me with the task, and because of the sensory assault I had very little executive function resources available to create a script on the fly.
About 3 minutes in I was done…. but I pushed through. About 10 minutes in someone asked me if I was ok. I guess I wasn’t doing such a good job of passing. I just said that it was a bit too loud for me and pushed on.
As the activity concluded I beat a hasty retreat to my seat (I chose to sit right on the edge of the group where it would be less intense for my senses), grabbed a fidget from my bag and some lollies to chew and tried to reset my sensory system so I could actually listen to the rest of the session. It was hard. My mind kept flitting over what I had said and to whom, trying to remember what they had told me, worrying I had given too much personal information, or not said the right things. My body was buzzing and that made it hard to still my mind. That activity set me up for a difficult night. I had to deal with a sensory nightmare, that was combined with a social challenge, and it cost me my processing energy and coping skills for most the rest of the evening.
That is what I mean when I say “non-autistic people really don’t understand the effort we put in to be in their spaces and involved in their activities.” People who do not have the sensory challenges I do, who do not find spoken language difficult to process, who seem to effortlessly know the unspoken rules of exchanging small talk and personal information, do not know how hard it is for me to exist in that space. The fact that I can do it, most of the time, with a reasonable amount of success makes it even harder for others to see how difficult it is for me. They can’t know, unless I stop being able to cope, or I tell them.
I want to be clear that I don’t share that example as a criticism. I know that at this conference, if I had expressed a need not to participate, or to participate differently, my needs would have been respected. It was a valuable learning experience for me. I figured out some significant things that will help me go into these types of spaces in the future, and that will help me in letting people know what my needs are. I share it simply as that- a learning experience. I hope my experience can help you learn too.
I can see two contexts in which knowing what goes on internally for an autistic person is helpful for other people. One is in situations like mine: where I can mostly keep it together but it is helpful for me if the things that make it difficult can be avoided. The other is for understanding people who can’t hold it together.
All too often I see autistic people labelled with “disruptive behaviour”, “aggression”, “attention seeking tendencies”, and many other negative stereotypes, when all they seem to me to be doing with their behaviour is communicating distress because their needs are not understood or met.
Autistic people regularly experience sensory assault, social confusion, language processing difficulties, and executive function challenges that could be resolved with some help from others, or by giving the person space and autonomy. When people do not accept that as a fact they tend instead to punish the person for behaving “poorly” as they express their distress. The onus is left on the disabled person to change themselves, or to cope by internalising their distress, instead of non-disabled people listening to what is needed and changing what they do to provide support and facilitate inclusion. Expecting autistic people to be present, but failing to support in this way is in fact a micro segregation disguised as inclusion.
The autism community (made up of autistic people and their families, friends, carers, professional supporters, etc.) talks a fair bit about inclusion and accessibility. The disability community discusses inclusion and accessibility too, but with a strong focus on physical and intellectual disability, often while overlooking neurodivergence as a disability.
I think it’s really important that we all understand that inclusion and accessibility are not just about being physically present in the same spaces. If you aren’t autistic and you are knowingly asking autistic people to share space with you it is important you acknowledge there are lots of things you don’t experience in the same way we do, and that those things are a barrier to us being meaningfully included in the activities we share. In case you missed them as you read through, I am talking about four specific things here:
1. sensory challenges
2. language processing challenges
3. social challenges
4. executive function challenges
I’m going to summarise and repeat a couple of things, to make sure I’m being clear. Inclusion is so very important- it is a right of every person, and I think it will take the whole autism community to advocate for it before we see it happen. But I do not believe that parents of autistic people, professionals who work with autistic people, or any other non-autistic person who is part of the autism community is an expert on what autistic people need to be included. The experts on what autistic people need are are autistic people themselves.
If you are truly seeking to include and support autistic people (whether children or adults) in spaces we share with you, you must ask autistic people what they need when you are planning. Otherwise, the question needs to be asked…. is it really inclusion you want?