Oireachtas Joint and Select Committees

Tuesday, 30 May 2023

Joint Oireachtas Committee on Autism

Autism Policy: Discussion (Resumed)

Ms Jacqueline Campbell:

It would be well worth the committee engaging with the cross-party group. That is run by the Scottish Parliament and independent of the Scottish Government. The minister is invited to address that group from time to time and-or officials like ourselves can go along and make presentations to the group. I have done that fairly regularly. They make their own independent assessment observations of the work we are doing, for example.

The Chair asked about the commissioner. There is a commitment to a piece of legislation in this parliamentary term with the aim to consult publicly and widely across Scotland near the second half of this year. We are working with panels, including a panel of people with lived experience, to help us to design and deliver that consultation paper and exercise. The debate around the potential commissioner has been really interesting. The campaign to have something on the Statute Book was led by three main national charities in Scotland. They are Enable Scotland, that represents people with learning disabilities and autistic people, Scottish Autism and the national Autistic Society. They successfully campaigned to have legislation brought forward and saw a commission or commissioner as part of that. There are a range of views on the commission or commissioner and whether that is the best way to go, so we definitely need to consult on that and other models to see what the consensus is. There is not a consensus view on that in Scotland at the moment. The main charities are very supportive of a commission or commissioner, but that is not shared universally by, for example, autistic people-led organisations at the moment.

In the past month we had a discussion with our lived experience panel and that panel has autistic people, people with Asperger syndrome, ADHD, and learning disabilities on it. We advertised for that panel, so we specifically wanted to draw people in who did not have an association with existing organisations, who were individuals we maybe had not worked with before. That has been really successful and working with that group of people has been a very energising and exciting process. They have had an initial discussion about a commission or commissioner. Generally, there is more of a consensus towards the benefits of that than not, and that is where we are at the moment. That will be one of the key themes that we need to explore and that will run through the consultation. That is where we are on that.

I probably cannot add much to what I said already about workforce planning. We have a piece of work to do around this. We know from the work we are doing on pathways what we are not trying to do in terms of the support for neurodevelopmental assessment. We are not trying to increase that through psychiatry and psychology. We are trying to look at multidisciplinary teams that are more nurse-led, NAIT, and OT inclusive where we can use those elements of the workforce to provide that. That is work we will do as a result of the report that was published in February.

There was, interestingly, a question about language, which is a huge issue, for autistic people in particular. It has come up around the Bill. The Bill's title will not be chosen until it goes into Parliament, and it is called the learning, disability, autism and neurodiversity Bill, which was kind of a tag put on it originally but we already know and appreciate that neurodiversity is not the right language because neurodiversity is often aligned to biodiversity as a wider concept that includes neurotypical people as well as neurodivergent people. It would probably not be the appropriate terminology around the Bill. We had a whole discussion about language with our lived experience and other panels, and it is something that will have to come to the fore for us because we need to reflect it in the Bill. We tend to find that autistic people in particular are generally comfortable with the term "neurodivergent" so I tend to use that a lot because I know people are comfortable with it, and it has certainly come to the fore. A couple of variations of that have been suggested around the Bill discussions we have had. We find people with learning disabilities are currently less comfortable with that language. They like to be described as people with learning disabilities, the neurodivergence tag is newer to them and maybe people are a bit less comfortable. It is a developing conversation around language but one we need to try to get right for the Bill. What we know is that people do not want to be described in a way that is very deficit-led, and people are not comfortable with us talking about neurodevelopmental support, for example, outwith a more medicalised context. People want us to follow the social model around disability, not a medical model, and we want to see that reflected in the language. That is the challenge.