The Royal College of Speech and Language Therapists (RCSLT) are updating their Autism Guidance for Speech and Language Therapists (SLTs). Speech and Language Therapists and the public were given the opportunity to comment on the draft guidance earlier this year. The guidance is due to be published in September.

A collective of speech and language therapists, Autistic professionals, academics, advocates, and allies wrote to the RCSLT directly, expressing concern and disappointment about the content of the proposed guidance. The copy of this letter below outlines our concerns and provides suggestions for autistic-affirming and neurodiversity-affirming Speech and Language Therapy.

We welcome further conversations on this important guidance.

I was one of the professionals who contributed to the open letter and very happy to platform it here.


We welcome further conversations on this important guidance. At the bottom of the letter you will find a link to an online form where you will be able to give your comments. You can also go straight there via this link; Provide your feedback

We will then update this blog post regularly with people’s comment.

The response from RCSLT can be found underneath the open letter.

You can also follow the conversation on Twitter (but do please remember to leave your comments online for us too). The complete thread is 14 tweets long and we have shared each tweet at the bottom of this blog post.

An open letter to the Royal College of Speech and Language Therapists in response to the public survey on the draft Autism Guidance (26 May 2023)

We are writing as concerned Speech and Language Therapists, Autistic professionals, researchers and allies, regarding the latest RCSLT draft Autism Guidance for consultation. We collectively represent a breadth and depth of expertise in this field, with many of us recognised as leading professionals within our respective areas of professional, academic, voluntary and advocacy work.  In keeping with a growing awareness of the value of co-design and co-production with neurodivergent experts, we hope that you will invite further collaborations regarding the final version of the Autism Guidance so that it accurately reflects the needs and experiences of Autistic people and truly embraces the Neurodiversity Paradigm in SLT practice. 

As you are aware, there were many public comments about this second draft on social media when this was shared at the beginning of May. This came both from SLT professionals and non-SLTs, as well as a large number of comments from the Autistic community and its allies. These views, overwhelmingly, shared dismay, disappointment, frustration, and anger about the nature of much of the revised content.

While we recognise some edits were made following the first draft of the Autism Guidance and note some improvements to the guidance as a result, we share those concerns and the distress of the Autistic community and colleagues. We outline those concerns below.

Despite some clear intentions to reflect a more neurodiversity-informed approach to SLT support for Autistic individuals, in our view, this document represents “Neurodiversity-Lite”. Neurodiversity-lite described by Shain Nuemeier (2018) as, “when neurotypical people, who either use the language of the movement in good faith or intentionally co-opt it, undermine its work by overlooking or outright contradicting its core concepts, including bodily autonomy and basic dignity. If anything, such inauthentic trappings of neurodiversity can allow charities, service providers, and caregivers to effectively disguise ableist stereotypes and harmful practices for audiences that aren’t aware of or attuned to them.” We would, therefore, urge RCSLT to carefully consider our concerns and suggestions to avoid these pitfalls.

For an organisation purporting to be neurodiversity-affirming, some of the language used in this document is not in line with this e.g., use of the terms ‘neurodevelopmental condition’ and ‘spectrum condition’. Please refer to this Bottema-Beutel et al (2020) as a guide. NHS England has also a helpful resource on language. In addition, the description of Autism as a spectrum and also as a wheel is confusing as one description negates the other.  The wheel analogy would be more useful, in our view. 

There are underlying tones of ableism throughout the document e.g. ‘employment is a desirable outcome’, ‘0.6 – 1 in 100 people having autism’. Furthermore, recommendations for interventions aligned with a deficit model and reductionist approaches, e.g. PACT. Interventions which have neuronormative goals, such as within the More Than Words programme do not align with neurodivergence-informed therapy Chapman & Botha (2022). These authors make the case for a “focus on neurodivergent flourishing rather than normalisation.”

Prevalence figures

Statistics on autism prevalence are notoriously varied, and the statement in the document about prevalence does not reflect this variation. Indeed,there is also some confusion in the document on whether Autistic people are considered  a neuro-minority or whether autism is considered to be relatively widespread.  Local statistics have not been included, such as the Scottish population statistics that show 15% of Autistic people have a learning disability (Kinnear et al 2020). The document cites a world-wide estimate of 0.6 – 1 in 100 (Salari et al 2022; Zeidan et al 2022). Other figures are important to be aware of such as the CDC figures indicate a prevalence of 1 in 36. Northern Ireland statistics show 1 in 20 school children are Autistic. 

Regarding the Autistic people in Employment figures, these are flawed as in fact there are a number of estimations of these. These statistics are presented as a fact in the document without any caveat into explanations regarding the limitations of these figures.

Contemporary evidence base for neurodivergent-affirming SLT

The disappointing lack of neurodivergent-affirming research cited in the document is incongruent with the RCSLT opening statement regarding aspirations for a neurodiversity-affirming model. There is insufficient understanding of neuro-cultural differences. There is a brief reference to Double Empathy Theory (DET) and Monotropism Theory, but  the impact of these theories on both the Autistic and non-autistic population is insufficiently reflected, as exemplified by the statement, “many Autistic people find certain theories i.e. the double empathy problem (Milton 2012) and monotropism (Murray, Lesser & Lawson; 2005), helpful when considering their own diagnosis.” This statement overlooks that these two theories more accurately explain Autistic experiences in a non-pathologising way,  guide our support of the person, address the transactional nature of communication difficulties, and they are increasingly evidenced by empirical research.  These theories along with the growing evidence base of the  Diversity in Social Intelligence and the work of Professor Noah Sasson and colleagues (e.g. Sasson et al 2017) are core to the work of neurodivergent-affirming Speech and Language Therapists. This has not been explored in the guidance.  

Here are some examples of the application to SLT: The DET underscores the importance of recognising the mutual misunderstandings that can occur between Autistic and non-autistic people (Crompton et al., 2021), and so it is important for a non-autistic SLT to be aware their own capacity for misunderstandings and assumptions about e.g. lack of cognition.  The work of Wood (2018) is highly relevant for SLTs and highlights this phenomenon. Further research by Wood (2019) looked at incorporating the Autistic student’s interests to capitalise on their monotropic cognitive style, highlighting how this enabled their communication (and well-being etc.) See also Pavlopoulou, (2020), Phung et al., (2021). There is also empirical research on the social benefits of shared interests (noting in particular that these are Autistic modes of sociality) e.g.Heasman & Gillespie (2019)

We would suggest a complete rewrite of the paragraph referring to Double Empathy Problem and Monotropism, taking into account the broader applications of these theories, the evidence base, and their relevance to tailored SLT support for Autistic individuals. See Monotropism for a central resource. Such information would constitute vital guidance for SLTs and so we urge the RCSLT to demonstrate a greater understanding of the importance of these theories.  It is our opinion that SLTs should have knowledge of Critical Autism Studies and we would hope to see the guidance leading on this. 

PECS: a behaviourally-based requesting system

The value of listening to and valuing a diversity of Autistic experience needs to be emphasised, and on an ongoing basis. Chapman & Botha (2022) argue for a ‘standpoint epistemology’ in neurodivergence-informed therapy, with those closest to an experience having the greatest access to the knowledge around that experience. In their view, the focus of therapy should not be on ‘remediation, prevention and cure’, but instead on the exploration of neurodivergent pride and the relational impact of environments; it is not only sensory environments that can disable, but also stigma, discrimination and victimisation. A case in point is the apparent disregard for many voices in the Autistic community, Autistic professionals, and Autistic and non-autistic SLTs who advocate for a rejection of the use of PECS as a form of AAC due to its inherent limitations and behaviourist underpinnings. See here for a good summary of the problems with PECS. The paragraph relating to AAC suggests that PECS is useful for an Autistic person who can’t initiate communication. This recommendation highlights a lack of understanding of Autistic communication. There is significant concern that RCSLT have not understood the inherent harms or limitations within this method. This approach causes distress to many of us. 

The need to consult with non-speaking Autistic people 

SLTs find themselves working with a significant number of Autistic children and adults who are non-speaking. Autistic advocacy organisations such as CommunicationFIRST, Communication4All, Zekwande Foundation, NeuroClastic, and Autistic Strategies Network, working directly with non-speaking Autistic people ask that professional bodies and researchers seek input and ongoing guidance directly from non-speakers, especially those who have motor disinhibition difficulties or apraxia which underlies their significant communication difficulties, described here by Ido Kedar, “ means I can’t get my body to do what I want it to do, when I want it to, with reliability and consistency. This is entrapment. It is not receptive and expressive language confusion, and most definitely not a lack of thought, emotions and awareness. In my opinion, this is like a paralysis of intentional responses. When it comes to self-stimulatory behavior, I often cannot get my body to stop moving to its internal impulses though I may desperately want it to, and at other times, such as when I lie in bed unable to move to my desire to pull on another blanket, I cannot get my body to listen to me at all.” 

As we cannot represent the needs, views and experiences of non-speaking Autistic people, we ask that RCSLT hears directly from an advisory group of leading non-speaking Autistic advocates. 

Gestalt language processing

We would ask the RCSLT to consider including guidance on gestalt language processing and the evidence base for the Natural Language Acquisition Pathway. Here is a summary of the evidence. The complete history, research and resources are available at Communication Development Center.

Autistic masking

Masking and stigma are at the core of autistic experience. (Chapman et al., 2022) describe masking as “emotionally and psychologically rooted, which develops partially subconsciously within a social-environmental context. Participants described masking less as a choice or decision, but more as an anxiety-driven response to others’ behaviour and attitudes towards them, or to uncomfortable and inhospitable environments….masking is a response to not being accepted by the neurotypical world (Pearson & Rose, 2021).” 

The lack of understanding of Autistic masking in the document is a major concern. The following guidance highlights this: “support an autistic person in social understanding work if this is something they want to engage in – both in anticipation of planned social interactions and reflecting on past social experiences, encouraging self-advocacy rather than masking.” 

This recommendation fails to highlight the multi-faceted aspects of masking, which for many Autistic people is compounded by the impact of trauma, and of multiple intersecting stigmatised identities (Botha & Frost, 2020) The guidance is unclear on how the SLT would proceed, but the wording appears to legitimise teaching social skills, “if they want to engage,” without consideration of the longer term consequences of masking on mental health, development of self-image and identity. “..camouflaging autistic traits is associated with increased risk of experiencing thwarted belongingness and lifetime suicidality.” (Cassidy et al., 2020) We believe the guidance does not address the limitations and potential harms of teaching social skills and social scripting.  If the SLT takes this approach, this will increase vulnerability for an Autistic person who has likely absorbed deficit-based narratives about themselves across their life. In essence, SLTs could be setting an Autistic person up to fail or to just continue to feel like they are in the wrong. 

Secondly, there is minimal guidance on how to address masking and unmasking safely. The complexities of this area needs to be made clear, especially in relation to issues relating to a person’s race, gender identity and culture. Developing self-advocacy skills helps a person tap into their authentic self, helps them prioritise their needs, and eventually, they may be able to express those needs and boundaries. This is merely one aspect of supporting an Autistic person who masks. An Autistic person can’t be encouraged to unmask, if they haven’t been supported to build self-knowledge and if they are in hostile and unsafe environments. Chapman et al., 2022 cite Thomas (2020) who “compares neurodivergent masking to the Finding Nemo character Dory’s strategy to ‘just keep swimming’ and concludes that, ‘No amount of swimming… [is] enough if the world will not also adjust to meet you’.” (Chapman et al., 2022)

In summary, we need to show a sensitive understanding of an individual’s Autistic identity, as well as gain their insights into the impact for them of the wider environment (physical, social and cultural), rather than focus on unmasking as an objective. In short, we need to understand that “Autism + Environment = Outcome” (Beardon, 2019). This concept is again largely missing from the narrative in the current document.

The potential for harm and increasing vulnerability is real. We ask that the RCSLT pause, review, and seek expert advice from Autistic professionals before publishing the guidance. We ask that the RCSLT consult with renowned experts, Kieran Rose, The Autistic Advocate, and Dr Amy Pearson, Developmental Psychologist, authors of some of the papers cited above, and the upcoming highly anticipated book: Autistic Masking: Understanding Identity Management and the Role of Stigma

The SLT as an expert, deciding “best interest”

The following pieces of guidance are a concern:

“Speech and language therapists can support the teaching of specific language and communication skills: ● when it is in the Autistic person’s best interest, enhances quality of life and/or reduces risk.● when an Autistic person asks them to.”

“We have suggested that speech and language therapists can consider social skills training, PBS and PECS if it is in the best interest of a particular individual, enhances quality of life and reduces risk.”

We believe that the wording here, positions the SLT as an “expert” in deciding when it is in the “best interest” of an Autistic person to receive behaviourally based or neuronormative social skills training: the risks and harms of which we have outlined already. These statements suggest that the SLT knows best and can impose therapies which are not compatible with neurodivergent-affirming care. This expert positioning is something that sits uncomfortably with us. This recommendation erodes the espoused principles of neurodivergent-affirming and person-led care and negates neurodivergence-informed therapeutic practice Chapman & Botha (2022)

PBS has a very poor evidence base Hassiotis et al (2018) and according to Gore et al (2022) PBS is “…not intended for persons identifying as neurodivergent who do not have a learning disability.” The document has not addressed this evidence at all. PBS is an approach that uses ABA and we argue that it is not appropriate or safe for any Autistic person. There is much evidence to support our position. The Oireachtas Joint Committee on Disability Matters concluded that such behavioural interventions, “cannot uphold the UNCRPD principles of autonomy, dignity, right to identity and freedom from non-consensual or degrading treatment.” Aligning Disability Services with the United Nations Convention on the Rights of Persons with Disabilities ( (paragraphs 58 – 60). Ethical Standards and Guidance (Autistic Self-Advocacy Network, 2021, p 22 – 28) is highly relevant for SLTs working in Autism services.

The drivers that lead Autistic people and their families/ carers to sometimes to seek out or accept ableist therapy such as ‘social skills training,’ PBS, and PECS interventions are complex. It is important for us to hear and acknowledge individual perspectives and preferences, however, to not clarify the potential for harm, clearly documented in ethically-driven research into these interventions summarised above, poses a clear risk to both therapists and the individuals we support. These interventions furthermore firmly sit within the medical model framework. We need to make it clear how neurodivergent-affirming support is different e.g., Therapist Neurodiversity Collective. This is another area that is insufficiently covered in the current document in our view.

Lack of inclusion, social justice, and equality 

The guidance is minimal in terms of recognition of the impact of intersectionality. There is little reference to the needs of and considerations for Autistic people who are Black, People of Colour, ethnic minorities such as those from the Travelling community, and Trans people, nor the specific and changing needs of Autistic people across the life span. This lack of attention to the impact of multiple marginalisation is a further weakness of the guidance.  It is important that we take steps to address the dynamics of power and privilege when we consider the needs and experiences of Autistic people with varied and layered intersectional identities, who will be more likely to experience oppression and marginalisation in healthcare services, including SLT services. The contents of the current draft Autism guidance, as evidenced in this letter, represent a distinct lack of inclusion, social justice, and equality and exemplify how racist and ableist practice continues to exist through omission of racialised experiences. Indeed, the suggestions for good practice in this guide directly conflict with the ethics and morals demonstrated by the board of RCSLT, and we would like this disparity clearly explained.

Our colleague, Emily Price (Lees), also a signatory of this letter, was a supporting author for the Autism guidance, however, she had to withdraw because her views as an informed Autistic Speech and Language Therapist were dismissed by the leadership. Emily had expressed many of the concerns that are raised in this letter and she was not heard. Emily had previously written an article for the Bulletin regarding neurodivergent-affirming Speech and Language Therapy. 

While we understand (but do not agree with for reasons of accessibility) the RCSLT’s wishes to keep this consultation behind closed doors, for reasons of clarity and open discussion, the contents of this letter will also be published openly by us, in order to be inclusive to the many deeply concerned stakeholders who declared their concern via social media, but whose views will not be taken into account.


There is so much value that Speech and Language Therapy can offer Autistic individuals and the Autistic community. For example, the SLT role in facilitating equitable clinical services at all points of access and care, summarised using the acronym ‘SPACE’ in Doherty et al (2023) sets out how to meet 5 Autistic core needs in healthcare.  Many of these elements are either missing or unclear in the current guidance. Given the substantial public opinion, and our feedback as summarised, we ask, that in order to ensure the guidelines are neurodivergent-affirming and take a human rights approach:         

While this guidance is for and by Speech and Language Therapists, it is imperative to reflect on the fact that Speech and Language Therapy does not exist in a vacuum. To prevent this guidance being an echo chamber of Speech and Language professional thought and to ensure that the profession meets the actual needs of the Autistic people, cross-field input and, more importantly, the input of Autistic specialist professional stakeholders, beyond tokenistic representation is vital. Involving a majority authorship from the Autistic community, and from within the SLT membership, from the outset would be preferable. “Autistic people must be involved in all decision-making that stands to affect Autistic people, from the highest levels of policy development to individual support planning; that is, they ‘deserve a full seat at the main table’ (Gernsbacher, 2007, p. 13). With this in mind, neurodiversity advocates assert that autism research and practice must be brought into line with the needs and priorities of the Autistic and autism communities…. (Milton, 2014b; Raymaker, 2020; Robertson, 2010).” (Pellicano & den Houting, 2021)

We have an opportunity here to take a lead within health care, and for the SLT profession, both nationally and globally, on delivering ethical, neurodivergent-affirming support for Autistic individuals. Let’s not waste this opportunity. We want to see the RCSLT produce a robust document that is respectful and inclusive, one that can be a template for future policies on other neurodivergence going forward.


Elaine Mc Greevy, RCSLT member & HCPC registered

Lisa Chapman, RCSLT member & HCPC registered

Emily Price (Lees), (she/her) Speech and Language Therapist, RCSLT member &  HCPC registered

Kieran Rose, The Autistic Advocate, Consultant & Academic Researcher

Tania Melnyczuk, Founder, Autistic Strategies Network

Fiona Clarke, Disability Advocate, Autism Consultant and parent

Autistic Mutual Aid Society Edinburgh


Holly Sprake-Hill, Neurodevelopmental Specialist Occupational Therapist, HCPC    registered

Helen Edgar, @autisticrealms Primary SEN Teacher (Ba Hons, PGCE, PGDip)

Warda Farah, HCPC registered

Niamh Foy, Student Speech and Language Therapist, Newcastle University

Anon. Autistic Speech and Language Therapist, HCPC registered

Alexander Harrison, RCSLT member, Student SLT, University of Sheffield

Karen Melvin, RCSLT member & HCPC registered

Carla Rohde, Speech & Language Therapist, RCSLT member & HCPC registered

Cathy Wassell, CEO, Autistic Girls Network

Fiona Shaw, RCSLT member & HCPC registered

Caroline Keep, Autistic Teacher, Researcher, University of Central Lancashire

Emma Stuart-Smith, RCSLT member & HCPC registered

Anon. Autistic Speech and Language Therapist, HCPC registered

Lizzie Jenner (she/they), Autistic Speech and Language Therapist, HCPC registered

Rachel Winder @auticulate NVQ 6 BSL, BA (Hons) Education, MA in Autism

Anon. primary teacher and parent

Kabie Brook, Chair, Autism Rights Group Highland

Andy Smith, Founder and Creative Director, Spectrum Gaming

Kate Boot, AuDHD Highly Specialist Speech and Language Therapist & Sensory Integration Practitioner, RCSLT member & HCPC registered

Jess Garner, Autistic Teacher & Founder of GROVE Neurodivergent Mentoring & Education

Anon. Neurodivergent Speech and Language Therapist, RCSLT member & HCPC registered, and parent

Karla Hirst, Speech and Language Therapist

Polly Davis, Specialist Speech and Language Therapist

Anon. Autistic Psychotherapist, ACP registered

Nicola McMullen-Klein, Occupational Therapist, HCPC registered

This letter was also prepared with input from Dr Rebecca Wood of the University of Glasgow, and Kieran Rose, Consultant and Academic Researcher. 


Please leave your comments on our open letter to the RCSLT regarding the draft guidance and to the RCSLT’s response to our open letter. Your comments are vitally important.

The form for your comments is online and you will find it here.

We are adding comments as they come through and you can find them all at the end of this post.

Response to open letter about the draft RCSLT autism guidance consultation. From the RCSLT autism guidance project working group 20th June 2023

You can read the response from the RCSLT to our open letter by clicking on the link below (it will open as a file for you to download which you can then read/save/print etc.

NB: If you download our pdf version of the open letter it also inlcludes the RCSLT’s resoonse (the form to get the pdf is up towards the top of this post)


“As a Highly Specialised Speech and Language Therapist and the parent of autistic child, I fully support this letter.”

“As Head of the Specialist Teaching, Advisory and Resources Service (STARS) we support hearing and/or vision for those aged 0-25y. We would welcome consideration of Autistic children and young people with coexisting non-typical levels of hearing and or vision thhe arising complexities associated when attempting to follow guidance designed for all people with typical levels of hearing and/or vision.”

“Absolutely agree with the response sent to the consultation in the open letter. What was the point of rcslt asking if they were going to completely ignore it! Thank you for doing this.”

“I’m an autistic lecturer and I teach on a BSc Speech and Language Therapy programme. I applaud the signatories and authors! If I can help with this effort let me know – I’d be very happy to be involved.”

“It is time for the RCSLT to respect & acknowledge their ND members & the clients & families we work with. They merely provide a tick-in-the-box response to any challenges relating to the equally of ND individuals. This needs to change. I am a member of the RCSLT, but as an autistic SLT, the RCSLT does not represent me as they refuse to make real change.”

“I fully support the content of this letter both in my professional capacity as an SLT and personal capacity as mother of an aitistic child. Please RCSLT listen and adapt accordingly.”

“Please listen to autistic people. I was told my non speaking child wasn’t ready for an AAC iPad device by a speech therapist, thankfully I didn’t listen and went with my autistic instinct. My child can now communicate. There are no prerequisites for AAC devices. The fundamental mindset should always be presume competence. It’s time now to listen to us.”

“British Association of Teachers of Deaf Children and Young People (BATOD) is aware there is a growing number of deaf children and young people identified as having additional needs, that includes autism (Consortium Research In Deaf Education reports). BATOD is aware from member feedback that challenges exist across the UK in provision of and access to deaf services to identify autism and support the full profile needs within this low incidence, high need cohort.
Multi-disciplinary child/young person centred working, involving Qualified Teachers of Deaf Children and Young People and Educational Audiologists, is essential as part of the assessment process and subsequent post-assessment process as well as for specialist guidance regarding rooms acoustics of the assessment environment and typical learning environment and the possible assistive listening technology options.”

“Excellent letter. I agree with everyone you have said. I work with children and young people who access AAC. I am shocked that RCSLT guidance mentions PECS when we have research suggesting the a core vocab approach is far more beneficial. I would never suggest PECS! I am also shocked that SLTs have been mentioned as professionals who may coordinate care around PBS, which is just ABA in disguise according to my understanding. I feel that a profession we are or should be making a conscious move away from ABA. We know the evidence around ABA is that this is traumatic. I would not under any circumstance suggest or coordinate these types of goals. Compliance is never the end game! Thank you for taking the lead in educating the rest of in in the profession. I am right behind you!!!”


You can follow the conversation on Twitter by clicking on the first tweet of the thread. If you prefer not to use Twitter we have put the full thread below.

1/14 The @RCSLT are updating the #Autism Guidance due out in September. As part of the public consultation #SLTs #ActuallyAutistic professionals & allies wrote to the RCSLT with their concerns. The letter & RCSLT response at @KieranRose7

An Open Letter to The Royal College of Speech and Language Therapists – The Autistic AdvocateThe Royal College of Speech and Language Therapists (RCSLT) are updating their Autism Guidance for Speech and Language Therapists (SLTs). Speech and Language Therapists and the public were given the o…

2/14 The conversation in this letter & thread seeks reflection on concepts of knowledge, power; & reframing ‘expert’, to explore how change can happen. Drawing on @Stimpunks we set on our rationale for going…

3/14 “Know you’re complicit, but that means you have power.” so “We absolutely need to talk about power; be aware & honest; remove obstacles to power being shared, pay attention to how policies, our practice & our language divide & exclude.” @ByronyShannon

Co-production: words that make me go hmmm…Co-production is the word of the moment in local authorities, largely because the Care Quality Commission (CQC) assessment framework includes a commitment that ‘coproduction is embedded throughout …

4/14 Learn enough to get involved, but don’t get stuck. Thank you @eyfs4m

5/14 Imagine the world you actually want to bring about. Move from ‘deficit’ to valuing Autistic differences – @Spectrum0Gaming

Autistic differences – Autism UnderstoodThere are 4 Key areas where autistic people differ: Logical Processing, Sensory Differences, Executive Functioning Differences, Spiky Profiles.

6/14 Think about “a word to describe ideas that ask us to not blindly accept the knowledge of the past. …take a degree of criticality to everything that has been taken for granted…” @emgntdivergence

Reclaiming Neurofuturism: An introduction – Emergent DivergenceIn some of my recent articles, I have referred to something called neurofuturism. While neurofuturism itself is not a new word (although weirdly, I didn’t know this when I first used it), I do believe…

7/14 Start by dismantling the system within because, “The long-term well-being & empowerment of Autistics &.. other neurocognitive minority groups hinges on it..” @WalkerSensei

THROW AWAY THE MASTER’S TOOLS: LIBERATING OURSELVES FROM THE PATHOLOGY PARADIGM • NEUROQUEERNick Walker, PhD I wrote the original version of “Throw Away the Master’s Tools” in 2011, cobbling it together from a lot of things I’d posted in private online autistic discussion forums starting aro…

8/14 Cultural competence is required, “Is it time that Autistic people were given the space & platform through which to create their own “best practice”? @emgntdivergence @TanyaAdkin

Creating Autistic Suffering: Autistic safety and neurodivergence competency – Emergent DivergenceWhat does it take to support Autistic people in a professional context? David and Tanya explore the concept of neurodivergence competency and invite you to join in the conversation.

9/14 Identify your role in a system so you can subvert it. “To work within a system, to play by its rules, inevitably reinforces that system, whether or not that’s what you intend…” @WalkerSensei 

10/14 “…the master’s tools never serve to dismantle the master’s house..any time you try to use the master’s tools for anything, you somehow end up building another extension of that darned house.” @WalkerSensei 

11/14 Tap into communities preferably in the real world. “We must stop assuming the role of expert in people’s lives, reclaim our role as experts in listening, making connections, maintaining human rights & building lasting relationships.” @ByronyShannon

Why language matters“Language is the most powerful tool we have. Let’s use it well.”Surviving Safeguarding [1] Anyone who works with me knows that I care a lot about the words and phrases we use in social care. I firm…

12/14 Go out & DO THE DAMN THING, earnestly “co-production=IS THE WORK…not something to be confined to the remit of a lead or a board, or constrained by a strategy or a framework or a policy. It’s an ethos & a value-base that should run through everything we do.” @ByronyShannon 

13/14 Thank you to all who contributed to the content of the letter @ElaineMcgreevy @CommonSenseSLT @EmilioLees @thewoodbug @KieranRose7 @ekverstania @Fiona_Clarke_ @AMASEdin @MxOolong & those who signed in support. 

14/14 Thanks to @HollytheOT @Autisticrealms @WFarahslt @MercuryMorrigan @AHarrison_SLT @kitmelvin @karla_bakes @AutisticGirls_ @SystemicSLT @Ka81 @Emmelodica @LJennerSLT @auticulate @AutieAndy @Spectrum0gaming @AuDHD_SLT @GrOve_Org @OT_Expert Karla Hirst, Polly Davis, Kabie Brook 

    3 replies to "An Open Letter to The Royal College of Speech and Language Therapists (RCSLT)"

    • Katherine Twomey

      I’m an autistic lecturer and I teach on a BSc Speech and Language Therapy programme. I applaud the signatories and authors! If I can help with this effort let me know – I’d be very happy to be involved. You’re welcome to contact me on the email I’ve provided.

    • Jane Johnson

      I very much value informed debate within the S&LT profession and am absolutely committed to the many voices of experience being central in our clinical thinking and decision making. There is also so much helpful challenge and information in the above response to us as professionals, which I am very grateful to read.

      However, I feel very sad this morning in reading the above article to see that there is so much misinformation about Positive Behaviour Support (PBS) by the authors.

      I feel I have to speak out, as I believe we are in danger of extinguishing some much needed supports for some of our most vulnerable people, and preventing many autistic people who struggle to express their distress and needs using formal communication methods from the very support which will reduce restrictive practices in their lives, help people to understand their distress and enable them to be supported in capable and empathic environments.

      The information that is clearly misleading includes:
      1. “PBS has a very poor evidence base Hassiotis et al (2018)”

      The authors have selected, from the vast and positive evidence base which demonstrates improvements in Quality of life and reductions in distressed behaviours, one paper (which on reading evaluates the evidence of poorly delivered PBS plans) which showed poor outcomes. Selecting only one paper from a vast evidence base is a biased representation of the evidence and is disappointing in a profession which claims to conscientiously evaluate the evidence.
      The Gore paper cited by the authors contains many references that confirm the effectiveness of PBS in improving quality of life and reducing distressed behaviours.

      2. “The drivers that lead Autistic people and their families/ carers to sometimes to seek out or accept ableist therapy such as ‘social skills training,’ PBS, and PECS interventions are complex. ……….These interventions furthermore firmly sit within the medical model framework.”

      PBS is very clearly a bio-psycho socical model that seeks to understand distressed behaviours and addresses these through improvements in quality of life, capable environments, proactive prevention of distressing situations and finding other ways to communicate a need – in which the involvement of S&LTs is absolutely crucial. PBS is not impairment based, but works with the person and their network to ensure that the support is truly person centred and meets their own individual needs. The authors have cited no evidence to back their assertion that PBS is “medical model”.

      3. “The Oireachtas Joint Committee on Disability Matters concluded that such behavioural interventions, “cannot uphold the UNCRPD principles of autonomy, dignity, right to identity and freedom from non-consensual or degrading treatment.”
      The UNCRPD principles mentioned, and the upholding of all human rights is absolutely at the heart of PBS – this is also outlined in the Gore paper cited by the authors.
      These principles also underpin the parallel work of the Restraint Reduction Network, which is informed by the lived experience voice of many autistic individuals who have experienced the use of unnecessary restrictive practices.

      My concern is that PBS is being directly equated with developmental, neuro-typically influenced impairment based ABA “programmes” which have not supported self-advocacy, human rights and celebrating the autistic person’s uniqueness, and so this debate about the use of PBS has become very inaccurate and may ultimately harm the very vulnerable individuals that we are trying to protect and support from unnecessary restrictive and institutional practices.
      As one mother recently said “if it’s not kind, it’s not PBS”.

      My hope is that, as a S&LT profession we continue to do what we have always done, which is to work eclectically in a person-centred way, making best use of the available evidence base and that this debate does not accidentally prevent people from accessing the full range of supports and approaches that they may need across their lifespans.

      • Response written by Elaine McGreevy, Speech and Language Therapist in collaboration with some of the contributors to the Open Letter to the RCSLT.

        To address the points raised in the response to our letter regarding the effectiveness of Positive Behavioural Support (PBS):

        The author had concerns that our letter was misleading by providing only one reference regarding the poor PBS evidence base, referring to Hassiotis et al., (2018) who found that staff training in PBS ‘did not reduce challenging behaviour.’ The author missed that we also had hyperlinked the comprehensive AMASE PBS document (On ‘Positive Behaviour Support’ – AMASE) updated September 2022). This document was hyperlinked to the word, evidence, in the relevant paragraph. Quoting from the AMASE document,
        “Despite a broad buy-in, PBS is not actually supported by Disabled People’s Organisations and allies. This is because PBS does not meet human rights, has a poor-quality evidence base and its risks and harms are not understood. This paper has been prepared to set out evidence for these issues in order to aid discussions at all levels. Section 1 starts by providing evidence that PBS is akin to a brand of Applied Behaviour Analysis (ABA) as claims are often made that “PBS is not ABA”. Section 2 sets out ways in which PBS goes against human rights, despite claims by the field that PBS is a rights-based approach. Section 3 looks at the lack of an evidence base in the face of PBS claims that “PBS is the most evidence based….”. The extent to which concerns are shared is widespread and this is evidenced in Section 4. Section 5 explores the ways in which behaviourist interventions such as ABA and PBS can harm, an area the field seems to not have looked into.”

        We remain firm in our assertions that PBS does not have, in the words of the author – “a vast evidence base.”
        Gore et al., (2022) Positive Behavioural Support in the UK: A State of the Nation Rep…: Ingenta Connect stated that “there has not really been a robust evaluation of a PBS framework in a UK setting to date,” (p26). Strydom et al., (2020) described that although Positive Behaviour Support is a widely used intervention for ameliorating challenging behaviour, evidence for its use in adults with intellectual disability who are also autistic is lacking. They concluded that PBS interventions are less effective in ‘real world settings’ than the earlier studies on ‘highly selected cases’ indicate.
        Gore et al. rightly raised concerns regarding the adoption of PBS for populations other than those with a learning disability, as originally intended. They recognised that the use of PBS is problematic “given that up to “70% of autistic people (Loomes et al, 2017) may not have a learning disability,” (p6). We also question the suitability of PBS for any person.

        We strongly contest the author’s belief that PBS improves quality of life.
        Gore et al. admitted that “quality of life outcomes have often been neglected in PBS research and practice (Gore, Jones and Stafford, 2020) and many questions remain,” (p7). They posed important questions on who gets to decide what does “quality of life” look like for the neurodivergent person, “Quality for whom? How is it measured and assessed? What other outcomes are associated with PBS?” The questions around quality of life and PBS remain unanswered. Additional evidence of the lack of attention on quality of life outcomes was reported in a wider review of restrictive practices in Australia (The Royal Commission Research Report into restrictive practices July 2023). Researchers investigated the assumption that there is a connection between staff training and positive outcomes for people with disability, in particular, improved quality of life. They concluded that the assumed connection is both infrequently studied, and on the rare occasion it has been studied, it does not prove to be true. This review also concluded, PBS has a mixed and inconclusive evidence-base, the evidence base is derived from small sample sizes and is ‘emerging’ and not established. They found studies of behaviour support plan quality typically find that behaviour support plans are of “poor” or “remarkably low” quality.

        Kim & Shevrin Venet, (2023) challenge the efficacy of behaviourist approaches, recognising that while they may be effective at gaining short-term compliance, which can be viewed as progress or success, in the long-term behavioural approaches “damage relationships, undermine motivation, and decrease creativity and risk-taking (Kohn, 1993/2018)”. The author suggested that PBS reduces distress however research into the use of extrinsic reinforcement shows longer term problems, and unintended negative consequences. Loss of autonomy, agency, and intrinsic motivation are risked by the use of behavioural programmes using positive reinforcement.

        Given that Applied Behavioural Analysis (ABA) is a framework used within PBS, it is relevant to consider preliminary research that has indicated an association between ABA and trauma. Chapman & Botha, (2023) propose that ABA may undermine autistic autonomy and agency by forcing autistic people to ‘camouflage’ (i.e. performing neurotypicality due to pressure to appear more ‘normal’). They cite Chapman and Bovell (2020) who suggest that the neurodiversity critique of ABA has broader implications for the ethics of intervention, which should focus on neurodivergent flourishing rather than normalisation.

        Its-not-rocket-science-V6.pdf ( report which reviewed care in in-patient mental health settings suggested an alternative to PBS, in light of the poor PBS evidence base. Staff should understand autism and receive training from autistic trainers with current knowledge and understanding of autism viewed as a sensory processing difference. Environments should reduce sensory and other demands; supporters should support self-regulation and respond appropriately to autistic meltdowns/shutdowns to prevent a default to restrictive practice.

        The author challenged our assertion that PBS is a medical model approach, stating that it was “not impairment based, but works with the person and their network to ensure that the support is truly person centred and meets their own individual needs.”
        Gore et al. describes Normalisation Theory – Carr et al (2002) – as a defining component of a PBS approach, stating its intentions, “Normalisation theory continues to address societal reaction to negatively valued forms of diversity and difference and the symbolic representation of disability. It aims to improve the life chances of individuals by supporting culturally valued behaviour and appearances, and competency enhancement,” (p8). This quote highlights the neuronormative lens used by PBS practitioners. Rather than consider autistic culture, the lens of the PBS practitioner is trained to consider what society values and deems culturally acceptable. This sets the autistic person up to be burdened with demands to “improve” in line with society expectations, which will be influenced by ableism and decades of false autism narratives. Rather than consider what is good for the autistic person, the PBS practitioner is trained to think about what others will find acceptable, convenient, or palatable. Gore et al. admit concerns around PBS could be associated with attempts to deny neurodivergent people a part of their identity or to conform to “societal” or neurotypical preferences. By default, even with the best intentions of practitioners, pathologisation of neurodivergence and autistic ways of being will be the outworking of methods based on normalisation theory. Reviewing the use of Positive Behavioral Interventions and Supports in schools, Kim & Shevrin Venet (2023) found evidence this framework promotes adherence to white heteropatriarchal and ableist norms of behaviour (Annamma, 2018; Connor et al., 2016).

        Even though PBS literature states its practices would never be used to address autistic behaviour which is not harmful to the person or others, anecdotal reports and our varied professional experiences show that behaviours such as stimming and increasing tolerance of noise and touch are often targeted by PBS practitioners. In practice, we see an impairment / deficit focused application of PBS instead of the social / neurodiversity model which reframes neurodivergent disablement and distress as, at least, in significant part, the product of social exclusion, marginalization, and oppression Chapman & Carel, (2022). In our opinion, PBS more closely aligns with the medical / pathology model, as opposed to the social / neurodiversity model. The PBS practitioner assumes an authoritarian position as the “expert,” who surveys the autistic person, and takes data, to make conclusions about the “function of behaviour”. The overly simplistic model of understanding human behaviour and distress is not collaborative and will often arrive at flawed assumptions about the person’s distress. The autistic person, in the “patient” role, will receive a schedule of treatment in the form of “positive” reinforcement for desired behaviour. The autistic person is expected to comply with the advice and contingent reinforcements. Consistent with the medical model there is an over-focus on the “patient” having to improve rather than identifying and dismantling environmental barriers to participation and wellbeing.

        Similar parallels are evident in ABA. ABA also uses a reward system to change behaviours. Autistic people have long contested that ABA focuses on the normalisation at the expense of autistic thriving and well-being, often addressing behaviours which autistic people themselves find non-problematic. Chapman & Botha (2023) cite Wilkenfield and McCarthy (2020) describe ABA therapy “in which the autistic child is rewarded for engaging in activities that make him more normal,” (p. 37).

        Reflecting on the meaning of “person-centred’ support, any intervention that focuses on changing “behaviour” cannot truly be person-centred; it is merely “behaviour-centred”. Person-centred work involves seeing and respecting a person, valuing what each individual brings, not seeking to control, judge or change. Milton et al., (2022) makes the case that an “alternative account of autistic development is needed that is not rooted in notions of a social communication disorder, but of a different embodied way of being that can lead to effects on social interactions and understanding.” The complex nature of human interactions further underlines that the wellbeing of both parties depends not on one making hierarchical decisions about what the other should or should not do, but is interactional, in that it comes from the “active ‘online’ coordination” between individuals (Milton et al., 2022). This is something that SLTs should be working to understand so they can embrace the essence of person-centred support. This is of significance, especially to SLTs, given our professional vested interest in tackling barriers to communication. As SLTs, we should be focusing on autistic flourishing, Pellicano & Heyworth, (2023), “If we want to work toward a theory of Autistic flourishing, our contention here is that we need to shift away from this conventional medical paradigm.”

        The author referred to restraint reduction organisations who are working in this area. A recent literature review investigated the evidence around outcomes of staff training in physical interventions across care sectors. McDonnell et al., (2023) concluded there is little evidence to support the effectiveness and application of physical interventions, stating that, “at present, the vast majority of training in physical interventions that takes place around the world could be described by researchers as in effect ‘unlicensed products.”

        To summarise, we assert that behavioural methodologies such as Applied Behavioural Analysis and Positive Behaviour Support are not compatible with the Neurodiversity Paradigm and hence are not suitable for the support of autistic people.

        Further reading on the problems with PBS / ABA
        Positive Behavior Support (PBS) (
        Problematizing PBIS: Resource Round-up – Unconditional (
        Ann’s Autism Blog: Positive Behaviour Support Questions (
        Ann’s Autism Blog: Autism, ABA and PBS: Some questions (
        Ann’s Autism Blog: Autism: Some Vital Research Links. (
        Ann’s Autism Blog: Ethics and Autism: Rights and Responsibilities within Applied Behaviour Analysis – Research by Ann Memmott PgC MA (

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