Weekly Poll – Commissioner for Autism and Learning Disability (week beginning 10 May 2021)

Each week Disability Equality Scotland send out a poll question to our members on a topical issue.  For the week beginning 10 May 2021, we asked a question about a Commissioner for Autism and Learning Disability.

Results

Question 1. Do you support creating a Commissioner for autistic people and people with a learning disability? 

Comments

We provide verbatim comments where appropriate to illustrate strength of feeling or personal experience.

Support Creating a Commissioner

The majority of respondents (79%) support creating a Commissioner for autism and learning disability. The National Autistic Society Scotland, ENABLE Scotland and Scottish Autism believe a commissioner would help tackle the problem of discrimination and could be a powerful voice for improving access to services for autistic people and people with learning disabilities.

“We need to be the voice for a population that can’t always vocalise their needs directly.”

“This person can advocate on behalf of autistic people and people with learning disabilities with a named role that should give some clout. The definition and status of this role need to be carefully thought out.”

“I think it is very important for people with learning disabilities to have a strong voice and help make improvements to Scotland in areas that affect us.”

“ENABLE Scotland have given me excellent employability support. So if they are in favour of this idea then that is an indication to me that it is a good one.”

“The Commissioner will understand our needs and respect our wishes. They could help us to become better citizens in our local communities.”

“I think that a Commissioner for autistic people and people with a learning disability is long overdue.”

“I think it is long past the time when a commissioner should have been appointed as he/she would have an important place in the recognition of this minority, but important group of people who would have very great difficulty in putting their point forward at a strategic level where a commissioner would.”

Attitudes and Behaviours

Respondents reflected on the attitudes and behaviours of the public towards autistic people and people with learning disabilities. This in turn is having an impact on access to much needed support in education, work, health care as well as social care and support within the community.

“I am autistic and all too often have difficulties accessing public services, especially the NHS. Many doctors (and other public facing staff) are simply not trained in how to ask questions fully forthrightly and directly, or they make assumptions that are inappropriate for autistic people.”

“I feel that there is no real understanding of people on the autism spectrum and learning disabilities in schools and workplaces. It is better to engage with these groups directly so schools and workplaces etc. can fully understand and appreciate autistic people and people with learning disabilities.”

“A Commissioner will be more aware of the real problems or adaptions required to improve health, education, employment, or life in general for autistic people and people with learning disabilities. They will not just be ‘guessing’ or quickly push people with autism and learning disabilities to the side and forget about them as could happen if they are to be considered amongst many other people with different conditions.”

Implementation

Respondents commented on the scope and remit of an autism and learning disability Commissioner, as well as the key factors that must be considered when recruiting a suitable individual to take on this role.

“I would prefer that the Commissioner themselves be an autistic person and/or person with a learning disability. I am autistic and too often organisations and supports nominally for us are more focused on non-autistic parents of autistic children and in fact autistic parents don’t have a lot of support. I don’t begrudge support for non-autistic parents obviously but they are often taking centre-stage and speaking over actual autistic people. So it would be reassuring that either the Commissioner is autistic and/or has a learning disability, or they work closely with self-advocacy organisations and don’t leave autistic adults out.”

“It’s important to work with the more vulnerable parts of the autistic community, e.g. black autistic people, those who use AAC and/or are non-verbal, trans autistic people (who are sometimes refused proper access to gender services because it is believed we cannot know we are trans if we are autistic although there are significant numbers of trans people in the autistic community and autistic people in the trans community). There must be an emphasis on “nothing about us without us” and autistic people and those with learning disability must be involved at every step and not involve harmful organisations like Autism Speaks.”

“Hopefully having a dedicated Commissioner could mark the beginning of government taking this issue seriously. Autism awareness all too often focuses on childhood difficulties, and not on navigating the adult world independently.”

“They should focus on helping autistic people get the right support to be as independent as possible. Another focus should be making sure autistic people are fully included locally and nationally on decisions that affect their daily lives.”

Funding

For the Commissioner to be successful, the role must be suitably funded. Some respondents questioned whether it would be feasible to create the role during the recovery from the COVID-19 pandemic.

“Important that the Commissioner is adequately resourced to make substantial changes. Perhaps it should be delayed in favour of National Care Service?”

“It will be the usual story of saving money. The Commissioner will be useless because he or she will be underfunded.”

“I think that there is a very good case for this Commissioner as the charities have stated. Unfortunately, in the current economic climate it might take some time before we see a Commissioner being appointed.”

Concerns

Respondents raised concerns about the remit of the Commissioner, and whether autism and learning disability, which have two varying sets of priorities, should be closely associated with one another.

“It seems like the needs of those with learning disability are an afterthought to that of those of the autistic community. People with autism can be highly intelligent with good cognitive abilities and their struggle is different to that of a learning disabled person.”

“Autism and  learning disability should not be linked in this way. Autism is not a learning disability and to link them suggests otherwise.”

“Of course I fully support a Commissioner for neurodiversity. However the way it’s currently been presented is exclusive. It conflates autism with learning disability. It also doesn’t account for other forms of neurodiversity.”

There were further concerns raised about whether autism and learning disability should receive a dedicated Commissioner, with some respondents suggesting that an overarching Commissioner for disability would be fairer and more appropriate.

“I don’t think it is right to single out these particular disabilities for the “special treatment” of a Commissioner. What happens to the rest of the disabled community? This risks creating a hierarchy of disability within political circles and will pit one disability against another looking for similar recognition/respect/treatment – call it what you want. There should be either a department for Disability within government or a Commission for disability that holds government to account for their treatment of all disabled people drawing on the experiences of disabled people directly and Disabled People’s Organisations (DPOs) but not “disability charities” who speak on behalf of disabled people – we can speak for ourselves thank you very much. I certainly hope that political parties, government and DPOs take a fresh look at this and work on producing a better system that doesn’t cause these issues but actually solves real-life issues for disabled people.”

“I think that when we start asking for a specialist commissioner for individual disabilities, we are asking for too much too soon. Perhaps a Disability Commissioner with a team of individual experts to advise.”

“Any Minister given such a role, should cover all disabilities and social care”

“Commissioner should be for all disabled people, not just some categories. It must be totally inclusive.”

“I think this would be renamed as neurodiverse and disabilities as a whole because than strictly autistic as other neurodiverse conditions have less awareness and understanding by comparison.”

“I think we need a commissioner for all disabilities, not only autism.”

Conclusion

The majority of respondents (79%) support the introduction of a Commissioner for autism and learning disabilities. Respondents reflected on the attitudes and behaviours towards autistic people and people with learning disabilities, which is restricting access to much needed support in education, work, health care as well as social care and support within the community. Concerns were raised about the level of funding that is required to ensure the Commissioner can have a meaningful impact. A number of respondents questioned the fairness of a dedicated Commissioner for autism and learning disability, and suggested that a broader Commissioner for disability would be more appropriate.

Disability Equality Scotland, May 2021