Learning Disabilities, Autism and Neurodivergence Bill: consultation analysis

Part 1: Reach and Definitions: Who Should the Bill Include?

Introduction

This section largely focused on the terminology that should be used in the Bill and who the Bill should include.

Three proposals, and the thinking behind each, were set out:

1. To use and include ‘People who are Neurodiverse’/‘Neurodiverse People’;

2. To use and include ‘People who are Neurodivergent’/‘Neurodivergent People’; and

3. To include specific conditions only in the Bill.

Respondents were asked which proposals they agreed with, which ones they disagreed with, and to outline any other issues which should be considered in relation to this topic.

Main Findings

This section elicited the highest response rate across the whole consultation, with feedback provided by 735 respondents (just over 80% of all respondents).

Proposal 2 (i.e. ‘People who are Neurodivergent’/‘Neurodivergent People’) was the most popular choice, receiving high levels of support overall - just over half of those who provided feedback at this section supported or responded positively about this option. Proposal 3 (i.e. naming/including specific conditions only), was also reasonably well supported, albeit by a lower number/proportion of respondents - just over a third of all those who responded at this section supported this option. Only a very small number of respondents supported the use of the term ‘neurodiverse’ as outlined in Proposal 1.

When considered by respondent type, Proposal 2 and the use of ‘neurodivergent’ remained the most supported option, albeit to differing extents. Around three quarters of neurodivergent individuals and public bodies (who answered this section) supported or responded positively about Proposal 2, while just over half of the individuals with learning disabilities, third sector organisations and DPOs also supported Proposal 2. It should be noted, however, that a few individuals indicated they had both a learning disability and a neurodivergent condition. When third sector organisations and DPOs were disaggregated by learning disabilities or neurodivergent focus, around three quarters of those who supported or represented learning disabilities supported Option 3, while those who supported or represented neurodivergent conditions or a mix of conditions were more split - with slightly less than two thirds supporting Proposal 2 and around a quarter supporting Proposal 3.

Proposal 1 - ‘Neurodiverse’

This proposal was widely dismissed by respondents. It was supported by the lowest number of respondents and had the highest number of respondents who explicitly disagreed with it.

While only a very small number supported the use of the term ‘neurodiverse’, they argued that it would not lead to people being excluded due to technicalities over wording. Individuals also felt this option accommodated self-identification and those without a formal diagnosis, and would not be negatively impacted or limited by delays in this area.

Those who disagreed with use of the term ‘neurodiverse’ argued that it was inaccurate, too broad, and not the right term to use. Respondents also reiterated concerns from the consultation document that the term ‘neurodiverse’ referred to a whole population rather than individuals, and therefore it would include neurotypical people within the scope of the Bill, which was considered inappropriate.

Proposal 2 - ‘Neurodivergent’

Reasons for Support

The term ‘neurodivergent’ was considered accurate, clear and precise. Several individuals also noted that this was a term they identified with, or was how they would describe themselves. It was widely felt (by a range of different respondent types) that ‘neurodivergent’ was a suitably broad term which would include a wide and appropriate range of people, was inclusive of all relevant conditions, capable of covering a spectrum, and adaptable enough to accommodate those with multiple and overlapping conditions/diagnosis. Respondents also liked that it was not too broad/did not include all of society, but also did not exclude individual conditions:

“I feel proposal 2 is the best option as it encompasses a wide range of people and will not exclude certain conditions. I like that it would cover relatively mild (in some circumstances) conditions such as dyslexia but also the other end of the spectrum too.” (Family/Friend)

Respondents also preferred this option as people without a formal diagnosis would still be included and protected by the Bill. This was considered important due to the barriers and difficulties many face in obtaining a diagnosis, the extensive waiting times involved, because some people prefer not to seek a diagnosis or label, and some therefore do not know which specific conditions they have.

Further, a few also felt that this proposal adopted a more human rights and/or social model of disability (rather than a medical model). It was considered to be needs led, focused on the person and common barriers faced in society, rather than being centred on specific labels, conditions, or diagnosis.

Respondents also felt that this proposal incorporated flexibility and future proofing as it could accommodate new conditions and evolving understanding of conditions without the need for updates and revisions to the legislation. It was felt that any requirement to update legislation to include new conditions would take time and incur a delay in people being protected by the Bill.

The order of the terms was also discussed by a few respondents, although there was no general consensus. While a few preferred to place the person ahead of the diagnosis (e.g. person who is neurodivergent/person with autism), others indicated they did not like the person-first language and requested it not be used.

Caveats to Support and Concerns:

Some respondents, who agreed with Proposal 2 in general, also expressed a desire/need to include a clear definition of neurodivergence or specific conditions (and potentially a non-exhaustive list of named conditions). This was particularly the case among organisations, although the reasons provided for this were consistent between different respondent types. It was highlighted that no commonly accepted definition of neurodivergence currently existed, but it was felt that a clear definition would be necessary to ensure understanding around the criteria/boundaries for who is in/out of scope, to ensure the definition does not become too wide and unmanageable, and to ensure that minority groups and those with rare conditions are included within the Bill. It was also felt that further education and awareness raising would be needed around the term ‘neurodivergent’ to ensure common understanding.

Similarly, others questioned exactly what conditions would be included/excluded under this terminology. In particular, it was highlighted that various mental health conditions, dementia and acquired brain injury could be considered to be neurodivergent conditions, but respondents were unsure whether the intention was to included them within the remit of the Bill or not:

“One thing about proposal 2 to consider is, do mental health conditions (Bipolar for example), personality disorders (borderline personality disorder, Narcissistic personality disorder) count as neurodivergent?” (Neurodivergent Individual and Family/Friend/ Carer)

Potential issues identified included difficulties in delivering services around such a definition. While this proposal would be consistent with the Additional Support for Learning Act, where needs rather than diagnosis is the priority, it was noted that, currently, a diagnosis was often required to access specialist support and services.

Several respondents (typically those who preferred Proposal 3) were uncomfortable combining learning disabilities and neurodivergence as there could be unexpected consequences. It was highlighted that the experiences and needs of the two groups are often very different. Some were concerned that people with learning disabilities could become “invisible” and their needs not met if they are subsumed within a broader ‘neurodivergent’ heading or a Bill which tries to tackle both together. Others were concerned that those with neurodivergent conditions would not consider themselves to have a disability and therefore combining these might be inappropriate.

Reasons for Disagreeing

Generally, those who actively disagreed with Proposal 2 felt the terminology may be too vague, open to interpretation and could create “loopholes” or allow “abuse of the system”:

“…very grey area re what comes under neurodivergent. Need to specifically name to clarify it to people. Definitions are essential, as there is a significant risk that the Bill will become too wide and therefore will not affect any meaningful change.” (Health Service)

Another common source of concern and/or reason for disagreeing with Proposal 2 was the perceived risk that creating too broad a scope would mean a huge number of people would be in scope and could overwhelm services. This could limit the impact of the Bill, with resources and services not being able to cater to all. In particular, respondents were concerned that many individuals, sometimes self-diagnosed, and some high functioning individuals who were most able to advocate for themselves, would monopolize the system/resources, making it harder for those most in need to be supported. Others argued that the use of such a broad label did not accurately reflect the range of identities, needs and experiences of those eligible within the Bill, and were concerned it could result in a ‘one size fits all’ approach and people falling through the gaps.

Both those who supported this proposal and those who did not, argued that some individuals, whom the Bill aims to support, do not consider themselves to be neurodivergent (particularly people with learning disabilities and Down’s Syndrome), and therefore this one umbrella term alone would not accurately reflect all those intended to be within scope. There were concerns that some groups/ individuals would not understand the term or interpret it to mean that they were eligible to the rights conferred in the Bill, and could therefore miss out. As such, it was recommended that if this proposal were to be chosen, the definition and name of the Bill should also specifically mention learning or intellectual disabilities (and potentially Down’s Syndrome - discussed in more detail under Proposal 3), and autism.

Of those who disagreed with Proposal 2 (and Proposal 1), some did so as they felt it did not adequately reflect those with Down’s Syndrome. It was argued that the Down’s Syndrome community would be less visible to services and support, that their needs would not be addressed, and that current levels of support could be diminished due to more generic approaches being developed.

Proposal 3 - Include Specific Conditions Only

Reasons for Support

Respondents who supported Proposal 3, i.e. including only named conditions, felt it was important to be specific, and that this would provide clarity about who would be protected by the Act. These respondents wanted to avoid ambiguity or including too broad a definition or using terminology which could be open to different interpretations:

“By listing specific conditions, there will be no doubt or confusion from individuals with regards to whether the Bill applies to/includes them… Many people with this so-called 'neurodivergent conditions' require things to be [as] clear and unambiguous as possible. By failing to name their conditions clearly, the risk of them failing to understand that the Bill applies to them is high - therefore defeating the entire purpose of the Bill in the first place. Proposal 3 will create ease for all, by clearly stating who the Bill applies too, thus helping carers, people with these conditions, and/or anyone else supporting them.” (Family/Friend/Carer)

Several respondents felt it was important to name specific conditions to ensure recognition, increase visibility, and improve understanding of different conditions. It was also suggested that this would facilitate the provision of condition specific tailored support. Respondents felt that this would make sure smaller groups and rarer conditions did not get not overlooked or “lost” as they might be if one broad generic term were to be used.

A few preferred this option as it allowed the Bill to focus more on people with learning disabilities rather than learning difficulties or neurodivergent conditions. Respondents had concerns over including specific conditions which were seen as less severe, or less impactful on a person’s daily life/interactions, such as autism, Attention Deficit Hyperactivity Disorder (ADHD) and Foetal Alcohol Spectrum Disorder (FASD), and they wanted to avoid “watering down” the legislation and its impact, which they considered a risk if a “catch all vague description” was implemented.

Concerns over budgets, resources and services’ abilities to develop practices which meet the needs of people with learning disabilities was also highlighted. Again, respondents feared that including too broad a spectrum would reduce the effectiveness of the legislation and services provided, and risked services drawing resources away from learning disability services to accommodate increased demand from neurodivergent people.

Several individuals interpreted Proposal 3 as indicating that the Bill would only apply to autistic people and those with learning disabilities and/or Down’s Syndrome initially, with the option to add more conditions at a later date. Such respondents were generally in favour of this approach, largely because it would allow the targeting of finite resources towards those most in need, at the earliest opportunity.

Equally, the ability to add to the list of specific conditions in the future was seen as a positive. This was considered essential to ensure the list remained up-to-date and reflective of current knowledge and understanding of different conditions and how these may evolve.

Among supporters of Proposal 3, however, there were differences in opinion regarding whether or not the Bill should be targeted at only those with formally diagnosed conditions or should also include undiagnosed individuals. While several respondents felt the provisions within the Bill should only apply to those who have been diagnosed, others felt those without a diagnosis should also be eligible.

Naming Down’s Syndrome

Respondents who discussed whether Down’s Syndrome should be named specifically within the Bill, were generally supportive of this. Many indicated that they supported Proposal 3 because it explicitly named Down’s Syndrome. Others, who either supported Proposal 2 or did not explicitly state a preference for any proposal, also supported the suggestion that Down’s Syndrome should be specifically named, regardless of which proposal was adopted.

While some who expressed support for naming Down’s Syndrome did not provide reasons, others (including several individuals with learning disabilities, family members/carers for people with learning disabilities/Down’s Syndrome, and support organisations) felt it would be important due to the differences between Down’s Syndrome, learning disabilities and neurodivergent conditions. It was argued that people with Down’s Syndrome often have very specific needs which are different to others, and that they/their needs are often overlooked. Respondents were concerned that failing to specifically name and include provisions for Down’s Syndrome would mean these individuals would be “lost”, “overshadowed” or “invisible” within the Bill and be unable to access to the required support.

A smaller number of respondents, however, questioned the need for the separation of Down’s Syndrome within the Bill, or argued against this. These respondents tended to feel that Down’s Syndrome should be included under the wider banner of learning disabilities or neurodivergence and not considered separately. There was a concern that naming Down’s Syndrome specifically would mean that other conditions would also then need to be given the same treatment. Others wanted the legislation to focus on needs rather than conditions.

Concerns and Reasons for Disagreeing

The main concern or reason for disagreeing with Proposal 3 was the perception that this would be too prescriptive and risk missing out or excluding specific conditions:

“I feel excluding any communities that see themselves as neurodivergent is a failing. This bill is being drafted as current legislation is not clear enough and groups are being excluded from support, so to narrow the scope and still exclude those that need help is counterproductive.” (Neurodivergent Individual and Family/ Friend/Carer)

Others felt this proposal placed a focus on diagnosis and therefore introduced the risk of excluding individuals due to problems and delays with accessing and gaining a diagnosis. This was considered to be a particularly acute problem for women and girls who are often diagnosed later, people from ethnic minority backgrounds and the LGBTQIA+ community, as well as for foreign students who may not receive a diagnosis due to waiting lists being longer than visa allowances.

Issues with misdiagnosis were also highlighted as a risk if eligibility was restricted to only certain named conditions. It was also highlighted that many individuals (presumably undiagnosed individuals) may not know which condition they have, which could result in ambiguity about their inclusion in the Bill and risk them being excluded from support. There were also concerns that this focus on diagnosis and labelling conditions would create a more medical model for the Bill, rather than the desired social model.

There was also some limited concern that creating a list of specific conditions could result in a hierarchy, with some people/conditions being considered more/less worthy of help, support and protection than others.

A few respondents also discussed the practical difficulties with listing specific conditions. Some felt that the list would need to be extensive, and therefore too long to be practical for including in the Bill. Others were concerned that, even though conditions could be added, the list of conditions would require constant updating to remain relevant and up-to-date, and that the time periods involved for such reviews/updates could be lengthy.

The use of labels was discussed, although again with little consensus. A few respondents wanted to avoid being labelled by their specific diagnosis/condition, while others found this “empowering” and preferred to identify their specific condition rather than using a less descriptive and more generic term.

Other Comments and Considerations

Combining Proposals 2 and 3

In addition to those respondents who supported Proposal 2 but wanted to include clear definitions or naming example conditions, several respondents explicitly indicated that they preferred a combined approach of Proposals 2 and 3. These respondents agreed with the use of the term ‘neurodivergent’ but also wanted to name specific conditions so it would be clear who was in and out of scope, making the legislation more workable and closing loopholes. This was particularly relevant for people with learning disabilities and Down’s Syndrome who may not identify with the term neurodivergent.

Title and Reach of the Bill

Regardless of which proposal respondents preferred, there was discussion around the name of the Bill, which conditions should be specifically named and identified, and which conditions would be eligible within the Bill generally.

Name of the Bill: A few respondents objected to the inclusion of autism in the name of the Bill. They felt this was a neurodivergent condition so should sit within that heading. It was argued that to name this one specific condition gave it more prominence and importance than other neurodivergent conditions or types of learning disabilities. Further, respondents felt that naming this condition in the title deviated from the social model desired and indicated the requirement for a diagnosis. However, other respondents felt it was important to retain autism within the title, alongside learning disabilities and neurodivergence, and felt that the condition needed greater mention throughout the consultation document.

Some indicated that the proposed name for the Bill: ‘Learning Disability, Autism and Neurodivergence (LDAN) Bill’, should be retained as it clearly indicated who the Bill was for and who was included. It was also suggested that this name had been circulating for a while and had become recognised, so changing it would lead to confusion.

Again, it was stressed that people with learning disabilities would not identify with the term neurodivergent, while those who are neurodivergent may not consider themselves to be disabled or to have a learning disability. As such, it was considered important to retain different types of conditions within the name and scope of the Bill.

Eligibility: There was much discussion about who was intended to be included within the scope of the Bill, and who respondents felt should/should not be eligible. As noted above, it was felt the term neurodivergent could include a wide range of conditions, including mental health issues, dementia, etc. and so providing clarity would be important.

Respondents queried whether those with learning difficulties were included (or argued that they should be) under the neurodivergent heading. Others argued that Fragile X Syndrome should be considered in the same way as Down’s Syndrome (i.e. if Down’s Syndrome is to be named specifically then so should Fragile X Syndrome). The Scottish Government was also urged to clarify that the Bill would include both mild learning disabilities and profound and multiple learning disabilities (PMLD).

A few respondents also wanted other conditions to be specifically named within the Bill and/or within the title of the Bill. This included people with other genetic syndromes, PMLD and FASD.

Similarly, a wide range of other conditions were also highlighted for consideration, either to be named in the Bill, or for the scope to be extended to include them. This included Global Developmental Delay (GDD), acquired brain injuries, executive function disorder, Developmental Language Delay (DLD), chronic depression and anxiety, obsessive compulsive disorder (OCD), post-traumatic stress disorder (PTSD), complex post-traumatic stress disorder (CPTSD), developmental trauma, and the impact of adverse childhood experiences and attachment disorders.

A few, however, questioned the inclusion of epilepsy within the scope of the Bill when other neurological conditions were not, with others questioning whether this was considered as a neurodivergent condition.

It was also felt important that the Bill acknowledges and reflects the co-morbidity with other conditions which are often prevalent. This included the presence of other physical disabilities, sensory impairments, epilepsy, cerebral palsy, and mental health issues/conditions.

Different Populations in One Bill

Several respondents felt it would be complex and inappropriate to try and cover all conditions and different needs within one Bill, and were concerned that the identity, voice, and needs of some groups would be “lost” when trying to accommodate a broader population. Of these, several were keen to streamline the current Bill and have it focus on only one or more limited populations, although, there was no consensus over which group(s) this should be. Each respondent typically argued for priority to be given to the condition they had, supported, or advocated for. Some wanted a focus on people with learning disabilities only, others wanted a focus on learning disabilities and autism only, while yet others felt it should focus on neurodivergent people only (and exclude people with learning disabilities as it was perceived that they were already protected under different legislation):

“It is our position that neither people with a learning disability, or autistic people or neurodivergent people, are optimally served by a single legislative Act which conflates their breadth of lived experience and needs. We believe these proposals need further work and do not feel they reflect the best approach for the distinct populations of interest.” (Health Service)

Another option put forward to tackle this by a few respondents (covering a range of different respondent types) was the creation of two separate Bills, one dedicated to learning disabilities (or learning disabilities and Down’s Syndrome) and the other focused on autism and/or neurodivergence. This was also suggested by small numbers of respondents at various sections throughout the consultation where it was felt that it would be difficult or inappropriate to tackle the issues experienced by different groups in the same way. However, as all respondents were not asked about the potential or their preferences for one Bill versus separate dedicated Bills, the true strength of feeling about this scenario is not known.

Greater Clarity Over Purpose of the Bill

A few organisations indicated that the aims, purpose and focus of the LDAN Bill were not obvious, and that there was a lack of clarity over what specific needs were trying to be addressed. These respondents felt that greater clarity was required in this respect to allow informed views to be developed.

In addition, a few respondents felt that new legislation/a dedicated LDAN Bill was not required, or at least questioned the need for it. It was suggested that issues could be dealt with via other avenues, including better enforcement of other legislation (e.g. human rights and equalities law such as the Equality Act, the UN Convention on the Rights of People with Disabilities, and the forthcoming Human Rights Bill for Scotland), and via the better resourcing of existing improvement work (such as the Mental Health Law Review).

Other Comments

A few respondents noted that they did not support or agree with any of the proposals presented. Others provided feedback without specifying their preferred proposal, although most of the comments in this section were consistent with those discussed above.

Other considerations discussed by respondents included:

• General discussion around diagnosis, the problems and lengthy waiting times involved with this, and the lack of appropriate post-diagnosis support - it was suggested that faster and greater diagnosis capacity was required and that both NHS and private diagnosis must have equal recognition;
• The potential for co-presentation of neurodivergent conditions/learning disabilities, physical disabilities, mental health issues and other conditions - while respondents stressed it was not helpful for these to be grouped together, the fact that comorbidities are often present is important to consider;
• That the name of the Bill, definitions and terminology used should be designed in liaison with those with lived experience - it was felt that all work on the Bill should be done/co-produced with those with lived experience and that their voices (and their carers’ voices) should be paramount;
• It is important for people to see themselves in the Bill, both in the title and throughout, otherwise they may not recognise that it is about them and will not benefit from it;
• Children’s and young people’s experiences need to be better considered throughout all sections of the consultation and their views need to be sought directly - in line with the requirements of the UNCRC;
• The Bill needs to address the needs of all age groups, including providing greater information and support for adults living with conditions and consideration of older age needs;
• Consider the provision of support for families, parents, and carers;
• Be mindful of the different presentations of different conditions and differing needs between women/girls and men/boys;
• Be mindful of intersectionality of having a learning disability or neurodivergence and other protected characteristics;
• The Bill should embed a human rights based approach, and align with the United Nations Convention on Rights of Persons with Disabilities (UNCRPD) and the United Nations Convention on the Rights of the Child (UNCRC);
• The Bill provides the opportunity to provide strong, clear guidance and understanding on the term ‘neurodivergent’;
• Consider funding, resourcing, training and support for services (including workplace managers) to ensure the aims of the Bill can be met; and
• There is a need to tackle the lack of wider societal understanding and inclusion for people with learning disabilities and neurodivergent people, and the stigma, presumptions and prejudices that exist - it was felt that adopting the social model could help to address this.