For many academics, now (before the marking comes in) is the ideal time to get away to a conference. As well as providing feedback on work in progress, conferences are a chance to network with colleagues from other institutions.
“You love it, don’t you.” I said to a colleague as she put the finishing touches to a paper she is presenting in New York this week.
“Love what?” she replied.
“The conference thing.”
“Oh yes.” she said. “Absolutely. It’s my thing.”
Conferences aren’t my thing. They make me anxious. I have three issues with them. Firstly, they tend to be held in venues I find difficult to navigate; I don’t like unstructured or open plan spaces with confusing layout and flow. Secondly, I hate the eating arrangements at conferences; typically these involve juggling with a plate, cutlery, drink and conference papers while making small talk with a stranger, standing up. And thirdly I dislike the constant social demands. I don’t have an autism diagnosis but put these things together and a conference is likely to trigger my version of a meltdown: imploding in my room, avoiding everyone. I imagine the way academic conferences make me feel may be similar to the way Dylan experiences the world much of the time.
Developing enough self-awareness to recognise conferences make me uncomfortable was helpful but it took years for me to admit that I didn’t enjoy them, even after I’d stopped going. Then, a couple of years ago, I was asked to give a presentation at a National Autistic Society (NAS) conference. This presented me with a dilemma. I had been asked to contribute a parent’s perspective of supporting a young person with autism and intellectual disability (i.e. Dylan) into adult services. This was a story I felt passionate about sharing; the experiences of ‘non-verbal’ autistic children and adults with a co-morbid diagnosis of intellectual disability are so often overlooked and I was delighted that the conference organisers were making space to represent a narrative from this group.
I find it frustrating that Dylan is usually absent from accounts of what it means to be autistic: the representations on TV, in film, in books, on the radio, on social media, in campaigns and (sadly) in training sessions and at conferences (even those which purport to focus on ‘autism’) tend not to have much relevance to my son’s life. I understand why this might be the case. Those with intellectual disability as well as autism don’t always make for easy footage; there may be behaviour which is difficult to understand or which may challenge. If the young person or adult is also non-verbal the narrative is difficult to access; the process of advocacy is mostly conducted through language and without this people tend to be invisible. Perhaps more importantly, those who are judged to ‘lack capacity’ as well as being ‘non-verbal’ are not only incapable of self-advocacy but unable to give consent to someone else to advocate on their behalf. It is hardly surprising, given these layers of complexity, that people such as Dylan should be absent from accounts.
I am of the firm belief, however, that it is better to have the account of an advocate than to have no account at all; as I argue elsewhere, “if we are to include the perspectives of those with intellectual disabilities, we must accept the voice of an interlocutor” (Barrett, 2017, p. 5). The invitation to speak at the conference was not something I could dodge; however difficult I found the process, I had to do this for Dylan. Besides, this was an NAS conference; I would probably find the practices designed with autistic delegates in mind helpful. I could, for example, wear a red badge to signal ‘please don’t approach me’ if I felt overloaded socially. If I could be comfortable at any conference, surely it would be here?
So I went to the conference and, happily, all was well. I think this was because of the company of a couple of people I felt comfortable with and the privileged access I enjoyed, as a speaker, to a sort of ‘green room’. I made heavy use of the room, retreating there with my plate of food at mealtimes and in-between sessions. I was conscious, during the conference, that I would probably not have found the event so comfortable were I attending as a delegate. The NAS had introduced some thoughtful practices (such as the red badges) but these could not counter the usual challenges.
The venue involved difficult mezzanine spaces with noisy break out areas and cavernous rooms with difficult acoustics. As well as the lack of physical boundaries and the noise and cold, there was a lot of juggling with difficult food and a lack of private space. And I don’t even have an autism diagnosis, I thought to myself as I scuttled back to the Speaker’s Room after a presentation on the second day. But then neither did the majority of delegates, I reminded myself. It was, after all, a Professional Conference, aimed at those who work with and support those with autism; a delegation from my son’s NAS residential home were attending the conference, for example.
The NAS annual conference provides an opportunity for autism professionals to reflect on their knowledge and skills, review new resources and network with colleagues in other settings. Why, you could ask, should adjustments be made at a Professional Conference where the target audience are not (typically) autistic? Well, yes. Except that the NAS (quite rightly) prides itself on making space for autistic voices. These were much in evidence at the conference; I probably heard more autistic than neurotypical voices, certainly from the floor and in the social space. This is a good thing but, I reflected after the conference, it has implications…
Soon after I returned from the conference a friend told me how, meeting a new group of people for the first time, she had taken the hand of a man to shake it in greeting. But, she cringed, it turned out he wasn’t actually offering his hand: “imagine how embarrassed I felt”, she said to me. I could, I reassured her; I had been equally embarrassed not to take a hand that was offered to me at an event at the NAS conference. The hand I failed to shake belonged to someone who identifies as autistic and (I realised later when she confronted me about it) it had mattered to her that I hadn’t returned that handshake. “I hadn’t meant to offend”, I told my friend. “Like you, I just misread the signals.”
Why was that I wondered? My undiagnosed autism or my neurotypicality? Or perhaps simply because hand shaking occupies an increasingly blurred space socially with many of us unclear of the rules? And there is no agreement about the meaning of such behaviour either. While I may have upset the woman whose hand I failed to shake, not everyone would have shared her reaction. This was brought home to me when a woman sitting next to me at dinner the next night told me that there was, apparently, someone at the conference who doesn’t shake hands. “Isn’t it marvellous”, the woman said to me, “that they feel able to say this?” She seemed to enjoy the idea so much I didn’t have the heart to tell her that it was me and that, actually, I did shake hands really.
I don’t know whether this is an example of being ‘a neurotypical in autistic space’ or ‘an autistic in neurotypical space’ but I recall it as an incident which made me think about the challenges of being truly inclusive and enabling everyone to feel comfortable in a social space. I have no idea whether autistic delegates felt any more comfortable with the social space than I did but I’m guessing that at least some of them may have shared my neurotypical discomfort.
What I quickly realised at the conference, however, was that autistic delegates were made very uncomfortable (understandably) by presentations which adopted a medical approach to autism and by the use of terminology which is not that preferred by the ‘autistic community’. One presenter came in for a particularly rough ride. He was presenting research from a project which drew on development psychology and which was not framed within the discourse of a social model of disability. A number of articulate autistic delegates challenged the project’s attempt to scientifically classify different ‘autisms’ and the medical language which the presenter used. While I understood the objections of autistic delegates, I didn’t share the view that the presentation should not have been included in the Conference programme; on the contrary, I welcomed the challenge and an opportunity to think differently.
This was a couple of years ago now and I’m conscious that my recall may be blurred and even distorted by time. But the gist of the presenter’s argument (as I understood it) was that if we can clinically identify different ‘autisms’, with differing profiles and needs, then we can plan more efficacious interventions. This is an argument I find attractive; although I understand the ways in which Dylan’s autism links him with others who share his diagnosis, I am conscious of the way in which his co-morbid condition (intellectual disability) means his experience and needs are significantly different. If the clinical identification of different ‘autisms’ allows individual needs to be met isn’t that ‘a good thing’?
Well, not necessarily. The problem with identifying different ‘types’ of anything is that it divides people; the larger population is divided into sub-groups which do not carry the same weight as they did together and, inevitably, competition emerges between the groups for resources and representation. The attempt to support a sub-group by specifying their particular needs can thus undermine support in two ways; firstly, by the articulation of multiple and competing messages about the thing in general (‘autism’) and secondly through the emergence of hierarchies in relation to things in particular (the different ‘autisms’).
An example which the presenter gave struck a chord with me. He described how (in the US, where he is based) a group of autistic people without intellectual disability and with self-care skills and the potential for independence had initiated a campaign to close down the residential settings which had previously provided accommodation for autistic adults. The group had been well-organised, vocal and very effective in articulating their position in the community and on the media; their aim was to challenge the concept of residential care and the discourse around such provision. The presenter described how he had challenged the campaigners: ‘But the homes are not for you!’ The problem, the presenter explained, was that these autistic campaigners were undermining the availability of provision for other groups of autistic adults; for those adults with co-morbid diagnoses who need additional care, residential living may be a good option.
The suggestion that different ‘autisms’ should be clinically classified did not go down well with autistic delegates at the conference because of the framing of the presentation within a model of disability which appeared at odds with the current discourse. As the mother of an autistic son with additional needs, however, I could see the potential value in such sub-classification. It is fantastic that autistic people who are capable of representing themselves are doing so but the problem with listening to some autistic voices is that others get lost. What are we going to do about the autistic people with intellectual disability who lack capacity and who don’t use speech to communicate? Without someone to advocate for them, they are not even in the conversation. The idea that there is an ‘autistic community’ and that it speaks for all those with an autism diagnosis is, of course, a myth.
One of the best sessions I went to focused on language; a panel of ‘experts’ made position statements before a general question and answer session with the audience. The discussion was useful with deep attention paid to choices about person first and identity first language. The knotty issue of whether autism could ever be an ‘identity’ for someone with intellectual disability and who ‘lacks capacity’, however, was not tackled. Nor was there a single mention of the difficulty posed by ‘learning disability’ as opposed to ‘intellectual disability’. As is perhaps clear from my own language choice, I prefer the term ‘intellectual disability’. This is because I find it a more exact way to describe Dylan, who is perfectly capable of learning and who is learning all the time; the fact that Dylan has not learned the same things as other people of his age is because he has a cognitive ‘impairment’ – a disability of the intellect – and not because he is unable to learn.
Although ‘intellectual disability’ is recognised terminology internationally, and used in many other countries (including the USA), in England we say ‘learning disability’. I make a real effort to use my preferred term of ‘intellectual disability’, and to apply this consistently, but it is very hard when other people don’t; because language is about communication, for the sake of clarity I will sometimes adjust my own language so that I am understood by others. It occurred to me, at the conference, that if no one is talking about the language we use about people like Dylan, we are a very long way from bringing them respectfully into a respectful conversation.
I worry that autistic adults such as Dylan are not only absent from the conversation, but not even in the room. While I was pleased to be invited to speak at the conference, and to describe my experience of supporting Dylan through the process of transition to adult care, there were no other sessions at the conference which felt relevant to my life or to Dylan’s. The staff who had travelled down from Dylan’s residential home for the conference reported this was typical; ‘it’s not usually aimed at those with learning disabilities’, one of them told me. An attempt had been made to acknowledge the diversity of interests at the conference through the organisation of sessions into different ‘streams’. I’m not convinced these worked, however; I found myself hankering after a ‘parents strand’ or a ‘Learning (sic) Disability’ strand so that I could find somebody who spoke my language and could understood my silence. Perhaps what is needed before we can find what unites us is a safe space to talk about our differences?
I intended to write this piece immediately after the conference; I have no idea why it has taken me so long to write, except that I find these issues challenging and my position is still evolving. I’ve no doubt that the piece I am finishing today is a very different one to the one I would have written two years ago. What hasn’t changed, however, is the main impression I came away from the conference with: that little attention is paid to those like Dylan who have intellectual disability as well as autism. Great leaps forward have been made for many autistic people in recent years, largely because of their own efforts and the fantastic contribution they have made to campaigning organisations, such as the National Autistic Society, through self-advocacy. Part of me is heartened by this but I am also worried that the different interests of those who can’t self-advocate are lost in this process.
The NAS started life as a parents’ organisation and I imagine that, in the early days, most of the support it offered was to parents, such as myself, who needed to learn how to care for and support a child with autism and intellectual disability. The NAS is no longer a parents’ organisation, primarily, and this leaves a gap in provision. As became clear to me at the conference, the NAS is not a professional organisation either (even though the annual event is billed as a ‘Professional Conference’). I’m not clear who the NAS is for; it seems to be trying to be all things to all people but in the process is, perhaps, failing to meet all our needs.