Frequently asked questions
1. It does not help Autistic people.
2. There is no strong evidence that Social Skills Training actually works. Outcome measures might show an observable change by the end of the intervention, however, this change tends to be a demonstration that the Autistic person has simply been taught to mask. As a result of the intervention they may be performing a set of socially expected behaviours that go against their natural state e.g., increased eye-contact, saying please and thankyou at the appropriate time, making smalltalk and chit-chat, sitting still and not fidgeting. This means the clinician can then say the intervention has worked. There’s also a lack of generalisation to everyday interactions which was highlighted in the Bellini et al. study (2007) who reviewed 55 studies of school-based social skills programs and found there to be minimal effectiveness.
3. It causes Autistic people to mask which causes social, sensory, and relational trauma. The Autistic person develops mental health problems, has meltdowns as a result of suppressing their distress, and experiences burnout. Masking sends a message to children that in order to be accepted they have to suppress their authentic self and not be who they are. Masking is also correlated with suicide in Autistic adults which makes sense when you consider the accumulation of years and years of suppressing your authentic self.
4. It's ableist. It doesn't account for autistic styles of communication. It's based on neuronormative cognitive, sensory, and language development which means it reinforces the social skills of neurotypical children.
Sources:
Cassidy, S., Bradley, L., Shaw, R. et al. Risk markers for suicidality in autistic adults. Molecular Autism 9, 42 (2018).
Milton, D. E. M. (2012). On the ontological status of autism: The ‘double empathy problem’
Cage, E., & Troxell-Whitman, Z. (2019). Understanding the reasons, contexts and costs of camouflaging for autistic adults.
Crompton CJ, Ropar D, Evans-Williams CV, Flynn EG, Fletcher-Watson S. Autistic peer-to-peer information transfer is highly effective.
PBS is a watered down version of Applied Behaviour Analysis (ABA) and is based on the same framework and methodology - https://www.autisticslt.com/pecs-aba
Main problems with PBS:
Poor evidence base - The 2019 investigation into PBS and Quality of Life found that PBS has a lack of scientific knowledge to its effectiveness with adult service users which was consistent with the 2015 review by NICE who didn't develop PBS in clinical guidance due to the scarcity of evidence. A cluster RCT evaluated clinical outcomes of training health professionals in PBS and found that there were no significant reductions in carer-reported 'challenging behaviour. Strydom et al., found a lack of clinical effectiveness delivered by intellectual disability teams and further evidence was needed. BILD's 2022 report concludes that PBS is not suitable for neurodivergent people without a learning disability (which is still hugely problematic and should not be used with any distressed person given the harms). In the PBS competency framework it states the evidence is old and poor, with the most recent research published 10-12 years ago - and these were single case studies which are poorly controlled with too many confounding factors.
Not trauma-informed - It causes more distress for a highly distressed person and causes masking. It promotes the use of desensitisation for a child's sensory distress e.g., playing videos of fire alarms so the child can 'get used to' noise (which is ineffective AND causes sensory trauma), encouraging children to wear ear defenders less, rewarding children for eating foods they cannot tolerate the texture of. PBS uses physical interventions - yet claims it is not a restrictive intervention. This is misleading given you are teaching staff how to perform restrictive, physical interventions and using aggressive stances / postures which causes a threat response in the child. PBS uses 'Planned Ignoring' which literally involves ignoring the child's distress and communicative attempts. PBS purposely creates situations for the Autistic distressed child through scenarios such as cancelling a planned activity so that the child can "learn how to cope with change" meanwhile inadvertently causing the child unnecessary anxiety. None of these practices understand Autism and the intersections with trauma, nor does it consider the daily struggles of living in a world which is not set up for you. That child likely needs predictability and structure in order to cope with acute anxiety, and you have purposely and intentionally caused them distress.
PBS does not understand the accumulation of the Autistic person's trauma and multiple marginalisations the individual faces throughout their lives. Its functional analysis doesn't account for all the possible reasons for a person's distress and instead, reduces them down to oversimplified categories such as Escape, Tangible, Attention, sensory. You cannot fit my distress into neat boxes and there is no understanding of the intersections of Autism + trauma.
It's behaviourism - It uses rewards and positive reinforcement through points and dojos to control behaviour. Just like ABA, PBS focuses on data; recording behaviours and incidents which are then turned into graphs and charts to be presented to families and governing bodies. However, data is only as good as your interpretation of it and if you don't understand Autism and trauma, then your data is meaningless. You may be able to tick a box to show the behaviour has reduced (which is great for a PBS practitioner because you can show you've achieved an outcome), but this outcome doesn't take into account the internal experience of the Autistic child; that behaviour change may just be the child suppressing their distress.
Autistic communities strongly oppose PBS, yet still their voices go unheard.
Further reading and sources:
- https://autisticinclusivemeets.org/2021/09/04/the-pbs-protest/
- https://link.springer.com/article/10.1007/s10803-018-3695-6
- https://neuroclastic.com/reservations-about-positive-behavior-support-or-pbs/
Yes.
The aims of social scripting are to teach socially expected behaviours that society deems as acceptable and so Autistic people are taught to provide acceptable responses in conversations. Rehearsing scripts doesn't work with most communicative interactions for Autistic people because real-life scenarios rarely go the way they plan. If Autistic people are most likely interacting with neurotypicals who do not accommodate them, then rehearsing scripts will not work. The SLT in an artificial setting such as in a session will practise with the person and give extra processing time. They're a supportive communication partner who responds to cues. This rarely happens in real life.
There are too many variables which Autistic people cannot account for in addition to the high levels of anxiety and dysregulation that arise in social interactions with neurotypical people, which means all that practice goes out the window and those scripts are hard / impossible to access. These are also my experiences. I have spent hours upon hours rehearsing conversations and things I plan to say, then beat myself up afterwards for not doing these things which further damages my self-esteem. The Autistic person blames themselves for interactions not being successful because the narrative has always been that they're the one with the social deficits.
They are based on neuronormative stages of language and cognitive development. They're pathologising, ableist, and dehumanising to Autistic people. They've been created by non-Autistic, non-disabled academics and clinicians who have decided what "normal" communicating looks like.
The impaired areas of Developmental Language Disorder (DLD) / Language Disorder (LD) diagnostically lie in syntax, morphology, semantics, pragmatics, working memory, phonology, word-finding, and discourse. In order for a child to meet the criteria of LD they must demonstrate significant difficulties in these areas, or in other words "children whose language development is not following the usual course despite typical development in other areas". By 'usual course' it means that the child is not meeting the expected Speech, Language, and Communication milestones (normative testing). But Autistic children aren't neurotypical. Their brains don't follow neuronormative stages of attention and language development which means standardised tests are not standardised on them. When a child's expressive and receptive language is tested, their scores then judge them solely based on their performance. Common struggles for those diagnosed with Language Disorder are are said to working memory and word-finding difficulties. Well, you'll find that most (if not all) Autistic people have these difficulties. So does this mean all Autistic people have Language Disorders? How does one differentiate between an Autistic person with or without Language Disorder? The diagnosis also does not take into account the variability of language difficulties that occur in different contexts e.g. Autistic people lose access to spoken language in times of distress and dysregulation, when fatigued or in burnout the Autistic person's ability to find the right words and sequence them in a cohesive/coherent narrative will be drastically reduced. What about an Autistic person who has Alexithymia and has difficulties identifying and describing emotions? What if their processing time varies depending on how overstimulating their environment is?
Social Communication Disorder (SCD) is another stigmatising label given to many Autistic children and which perpetuates the myth that Autistic people have social / pragmatic impairments. Since Autistic pragmatic language development has not been studied and we don't have the data, we cannot and should not assume that Autistic people have pragmatic language impairments. Labelling their communication and interaction style as disordered because they don't perform the social skills of neurotypicals is discriminatory and oppressive. It discounts the ways in which Autistic people prefer to communicate with each other. Their experience is ignored in favour of what society has deemed as an acceptable way to interact, and if you don't do these things then there must be something wrong with you. The historic evidence of pragmatic language theory does not consider Autistic communication styles nor do they show any understanding of differences in attention, sensory processing, and cognition. We now have ample research that shows Autistic people have their own unique social skills and that they communicate just as effectively with each other as when neurotypicals interact with each other, and that the breakdowns occur when Autistic people interact with non-autistic people. We know that The Double Empathy Problem can also explain the "so-called pragmatic impairment" which Gemma Williams wrote about in her 2021 paper "Mutual (Mis)understanding: Reframing Autistic Pragmatic "Impairments" Using Relevance Theory
And so these diagnoses are based on incomplete theories.
What about Autistic people who are Non-Speaking? AAC users? Those with unreliable speech? Gestalt Language Processors?
These individuals may be determined as having LD according to the diagnostic criteria based on the commonly used standardised tests that aren't standardised on them. This is flawed. People who can't produce mouth words may have intact language via AAC; we might see they don't have a LD but a difficulty in producing mouth words. So how can we confidently say that these individuals have LD?
Conclusion
We cannot and should not assume that an Autistic child has a Language Disorder or Social Communication Disorder when the available research is based on incomplete theories. Research is needed to study the pragmatic language development of Autistic children.
Definition of play: "engage in activity for enjoyment and recreation rather than a serious or practical purpose". Play goals are typically written to mould the Autistic / ADHD child's play into what neurotypical play looks like such as eye-contact, increased attention focus with an adult led activity, turn-taking and so on. Play goals are rooted in neurotypical stages of attention, language, and social interaction. If there are targets on what the child needs to improve on during a play activity, then this is not play. Shaping, changing, and moulding a child's play is not play. Children should be allowed to play however they like and instructing children on HOW to play is behaviourism. Telling a child how they should interact with an object / toy and placing rules on how they should play = behaviourism and ableism.
Source: https://autismlevelup.com/wp-content/uploads/VS_Play_Goals.pdf
We can interpret a behaviour but we might not be right – we can make an assumption about what we THINK is being communicated but there could be numerous reasons as to why a person might be doing what they're doing. Sometimes we might be right, but not always. Not all behaviour is communicative or intentional. Source- https://tania.co.za/behaviour-is-communication/
Establishing a robust communication system through other methods of Alternative and Augmentative Communication (AAC) through modelling language (Aided Language Stimulation). E.g. Core Vocabulary boards (paper based, hi-tech devices), adults modelling language consistently throughout the day by providing a language-rich environment, and communication and interaction support strategies. Modelling without expectation of a response. Providing an Ipad which contains LOTS of words and LOTS of different types of words e.g. Proloquo2go, SnapCore.
It was once assumed that Autistic people lack a ToM and therefore, lack empathy. Simon Baron-Cohen's work has formed the harmful narratives about Autistic people.
1. It excludes children with language / attentional difficulties or anxiety which will inevitably impact on the child's ability to engage in the experiment.
2. It's rooted in neuronnormative development of attention, cognition, communication which claims that Autistic children have a 'mindblindness'
3. Autistic people don't do well with deception and false-belief tests.
4. The Sally Ann Test led by Simon Baron Cohen - study's sample size was tiny which drew weak conclusions that sparked off decades of false information.
5. Does not account for The Double Empathy Problem (Dr. Damian Milton) whereby it does not account for both sets of people failing to understand each other's perspectives.
The goal “shows increased tolerance of sensory input” is hugely problematic because not only is desensitisation ineffective for Autistics (lacks evidence), it actually harms us. The reasons for this are due to sensory processing whereby we do not ‘get used to’ sensory input to which we are aversive to which is backed up by research. So forcing us to eat foods we can’t tolerate the texture of, or making a person with hyperacusis sit in a noisy room repeatedly so they can get used to the noise....we will never get used to this input and this just creates sensory trauma.
Source - Distinct Patterns of Neural Habituation and Generalization in Children and Adolescents With Autism With Low and High Sensory Overresponsivity - Green et al., 2019
When An autistic person 'puts on a mask' to appear less Autistic. When an Autistic person masks they suppress and hide their Autistic traits that society has deemed as undesirable, like stimming, echolalia, and communication differences that neurotypicals will think are strange. Masking is a trauma response due to repeated experiences of being socially rejected and corrected. Masking behaviours include: scrutinising interactions, monitoring tone of voice, practising and rehearsing social scripts and phrases, practising smiling and laughing, copying facial expressions, watching yourself in the mirror and acting out gestures and postures, avoiding wearing clothes that neurotypicals may make fun of, forcing eye contact, stopping yourself from moving your arms or body in ways which would make you vulnerable to being teased and socially excluded. It's survival.
Sources:
A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice. Amy Pearson and Kieran Rose.Autism in Adulthood (2021)
Cage, E., & Troxell-Whitman, Z. (2019). Understanding the reasons, contexts and costs of camouflaging for autistic adults. Journal of Autism and Developmental Disorders, 49(5), 1899–1911.
Cassidy, S., Bradley, L., Shaw, R. et al. Risk markers for suicidality in autistic adults. Molecular Autism 9, 42 (2018).
Yes. Autistic people can have high levels of empathy because we feel things so intensely that sometimes it can overwhelming. Being hypersensitive to sensory stimuli in the environment means that other people's emotions can be overwhelming during an interaction. Autistic people also may not show empathy in the way that neurotypical people do and our facial expression may not reflect our true feelings, which comes down to executive functioning and sensory processing differences. And trauma. As Dr. Damian Milton explains, The Double Empathy Problem is the theory that misunderstandings that occur between autistic and non-Autistic people is a 2-way street and that both sets of people will struggle to understand each other.
Sources:
Milton, D. E. M. (2012). On the ontological status of autism: The ‘double empathy problem’
Mutual (Mis)understanding: Reframing Autistic Pragmatic “Impairments” Using Relevance Theory Citation: Williams GL, Wharton T and Jagoe C (2021)
Eye-contact can be physically painful for Autistic people and anxiety inducing due to excessive arousal in parts of our brains which neurotypicals do not experience. Eye-contact is also a social norm and based on social politeness. It's a social construct. Emphasis on eye-contact completely discounts Autistic cognitive, communication, and sensory development and should not be written as a goal for an Autistic person.
It's ableist.
Sources:
Hadjikhani, N., Åsberg Johnels, J., Zürcher, N.R. et al. Look me in the eyes: constraining gaze in the eye-region provokes abnormally high subcortical activation in autism. Sci Rep 7, 3163 (2017). https://doi.org/10.1038/s41598-017-03378-5
Dalton KM, Nacewicz BM, Johnstone T, Schaefer HS, Gernsbacher MA, Goldsmith HH, Alexander AL, Davidson RJ. Gaze fixation and the neural circuitry of face processing in autism. Nat Neurosci. 2005 Apr;8(4):519-26. doi: 10.1038/nn1421.
Madipakkam, A.R., Rothkirch, M., Dziobek, I. et al. Unconscious avoidance of eye contact in autism spectrum disorder. Sci Rep 7, 13378 (2017). https://doi.org/10.1038/s41598-017-13945-5
Engages in play positively with peers
Shows evidence of active listening
Make appropriate conversational topic shifts
Use eye contact to demonstrate interest in peer conversations
Terminate conversations by using appropriate behaviour, vocal changes
How to be a good host during get togethers
Avoid showing strange behaviours e.g. making noises in public
Shows appropriate sense of humour during communication situations
Respond to teasing, anger, failure, disappointment appropriately
Identify events, situations, or activites in the school environment that cause X to feel safe, calm, not stressed.
Explain why a person might be feeling a particular emotion in response to a given situation.
For X to clarify a misunderstanding with a person that they feel safe with.
Request a toilet break through whatever method of communication they prefer (e.g. with a gesture, using spoken words, paper based visual, Ipad)
For X to increase their self-advocacy skills in order for them to make their own decisions and choices in the school environment.
Increase X's understanding of Autistic and neurotypical styles of communication and to describe a number of these differences.
Teach self-advocacy, perspective-taking, emotions, pragmatic language / social communication. Work with the people in the child's life to provide a language-rich, Total Communication environment. Increase their means, reasons, and opportunities for them to communicate. Teach supportive strategies to supporting adults e.g. communication strategies, language adaptations. Establish a robust communication system for Non-Speaking children or minimally speaking children e.g. AAC. Offer verbal / speaking children these options too - think about part time AAC users. Trauma-informed care.
Create an affirming nurturing environment. Support with predictability through Social Stories. Comic-strip conversations. Accessible information. Create emotional safety. Support with creating a Low Arousal Approach (Andrew McDonnell) to support with self-regulation. Collaborate with OTs, Clinical Psychology, Educational Psychology.
......and much more!
They put autistic people into boxes and suggest there are subtypes of autism which the autistic community are vehemently opposed to. These labels are very misleading and offensive. Being called High-Functioning is not a compliment and suggests that you have a "less severe" form of autism. Autistic people's needs fluctuate hourly, daily, weekly. It prevents an autism diagnosis and is why autistic children are missed growing up. When people describe someone as High-Functioning what they really mean is that person is good at masking. Low-Functioning is dehumanising. It dismisses the person's voice, denies their autonomy, assumes their skills can’t change over time, and invalidates other methods of communicating (alphabet boards, speech output devices, sign language).
Asperger's Syndrome was removed from the Diagnostic Statistical Manual (DSM) in 2013, therefore, it is no longer an official diagnosis. Autistic people have been vocal about Asperger's being a harmful label because of its associations with "high-functioning" autism as it suggests that if you are Asperger's then you must have a "less severe" form of autism. The Autistic community do not support subtypes of autism as they perpetuate the narrative that autism can be measured on a linear scale (severe, mild) and separates people into categories, leading to further marginalisation and dehumanisation.
Based on thousands of data, the majority of autistic people prefer identity-first language: so "autistic person". But why? Identity-first language makes it clear that being autistic is an inherent part of that person's identity. It's about empowerment, in the same way you would say "Chinese person" or "gay person" - not "person with Chinese" or "person with gayness". We always want to respect the individual person’s preference, so if an individual person prefers “person with autism” or "person has autism", we use that language. Sources:
"Identity-First Language" / "The Significance of Semantics: Person-First Language: Why It Matters"- Lydia Brown -https://www.autistichoya.com/2011/08/significance-of-semantics-person-first.html
Autistic people find it reductionist and stigmatising. The origin of the puzzle piece is from the National Autistic Society whereby there was a picture of a child crying over an image of a puzzle piece. It suggests that Autistic people have "something missing", therefore, they need fixing or completing, like a jigsaw.
Autistic boys don't have a different neurological system than girls. Autistic men and women mask equal amounts and use the same strategies. The problem is actually how boys and girls are socialised as children, and how girls are prejudiced e.g. how girls 'should' act socially. The gender debate re autism comes from the "extreme male brain" theory from Simon Baron-Cohen which has perpetutated the wrong narrative. As The Autistic Advocate Kieran Rose says, "Autistic women and girls don’t experience different Autism, they experience different prejudice". This also leads to further problems when you consider the high % of trans and nonbinary autistic people who do not fit these gender profiles.
Source:
A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice. Amy Pearson and Kieran Rose.Autism in Adulthood.Mar 2021.52-60
No. Not quite. In a survey (Amy Pearson et al., "Masking is life") it was found that some aspects of masking are shared across Autistic and non-autistic people such as utilising mimicry of others as a social strategy. All groups reported that masking made them feel disconnected. However, other aspects of masking seemed more specific to Autistic people such as sensory suppression e.g. stimming. Autistic adults who mask have high rates of anxiety and co-occurring mental health problems. In Autistic adults, masking significantly predicts suicidality. Autistic people feel obliged to pretend that they're not Autistic, particularly those who would traditionally be labelled as 'high-functioning'. This is why functioning labels are misleading and harmful and being called high-functioning is not a compliment because it invalidates and dismisses the person's difficulties. In "A Conceptual Analysis of Autistic Masking" by Amy Pearson and Kieran Rose (2021), they conclude: Masking is a "response to the deficit narrative and accompanying stigma that has developed around autism", masking shouldn't be associated with a "female autism phenotype", and masking takes significant energy and is only sustainable for short periods.
Autistic people view the study as eugenics; a prenatal screening of autism is offensive for an already marginalised group of people and is akin to testing for Down's Syndrome as it sparks fear of a child being born who is not neurotypical or able bodied. The study is led by Simon Baron Cohen who is a controversial figure in the community. He is responsible for numerous damaging flawed theories about autism e.g. ToM, Extreme Male Bain Theory. The researchers are claiming to investigate the genetic and environmental factors that contribute to autism" yet "are not looking for a cure". There are also various concerns over DNA and data storage; they claim it won't be used for a cure or further studies however, it was stated “There’s no way that we can ever say that a future political leader or a scientist won’t use the research for eugenics.” Other people involved are also problematic: UCLA: birthplace of ABA, Daniel Geschwind who previously worked for Cure Autism Now. Sources:
He is not a person that Autistic advocates support for many reasons. E.g., his disparaging comments around trans Autistic people such as "Once they've changed gender, they still have autism and when transition doesn't solve their problems they think, oh no, that was the only option I had, what's the point of life?". He impersonates and mocks Autistic people as a way to teach people about autism in his presentations. Autistic advocates are campaigning against the diagnosis of Asperger's Syndrome which he continues to heavily focus on and uses outdated terminology.
Sources:
Monotropism is characteristic of Autistic cognitive styles and re-frames the stigmatising theories that Autistic people have "rigid, inflexible thinking and restricted interests". We tend to:
- Focus our attention on one or a select number of things at a given time
- Hyperfocus on the things we're interested in
- Find change and transitions anxiety-inducing
- Seek sameness
- Have difficulty shifting our attention to less interesting things
- Engage in high interest subjects
- Seek information and go on fact-finding missions
Further reading
"Me and Monotropism: A unified theory of autism" by Fergus Murray: https://www.researchgate.net/publication/329936107_Me_and_Monotropism_A_unified_theory_of_autism
Apraxia: Total loss of execution. A motor planning disability that's often called "the brain and body disconnect" because the brain cannot always get the body to do what the brain wants.
Dyspraxia: Partial loss in execution. A motor planning disability that's often called "the brain and body disconnect" because the brain cannot always get the body to do what the brain wants.
What is associated with apraxia / dyspraxia: Autism, ADHD, OCD, epilepsy, Parkinson's, Tourette's…
"There is no actual evidence that FC or RPM are pseudoscience or debunked. The controversy comes from quantitative data from studies in the 90s which showed proof of facilitators influencing messages being passed by the communicators in controlled settings. Those findings aren't disputed. The issue is the generalisation of results to each message produced by FC - that evidence didn't show each message was influenced. It's only possible to show clear influence in situations where the facilitator knows information that the communicator doesn't. In situations where both people have access to the same information, you cannot conclude with any certainty that the facilitator is influencing the message. You cannot know" - Terra Vance, Neuroclastic.
The information and research on Wikipedia page is based on 20 year old information and Facilitated Communication being a pseudoscience. Thousands of lived experiences of Autistic apraxics are dismissed over a lack of "peer-reviewed papers" - what about this being valid evidence? We need further research.
"RPM can help a person become more purposeful while learning interesting things. I built motor skills by practising key words from the lessons. In the beginning I needed training to help me touch the correct letters on large stencils and alphabet boards. I had continuous prompts that included gestures, verbal directions, lots of encouragement, and I also needed to hold the pencil. Over time I was able to spell words independently, and this meant I could start sharing my own thoughts and opinions" - Chris Finnes
It minimises the child's struggles and difficulties particularly when it comes to sensory processing sensitivities which are often deemed as big reactions / overreactions by staff e.g., a child with touch sensitivity becomes distressed when a teacher brushes past them in the corridor. To the non-autistic person this reaction may seem big but to this child it feels intolerable due to their sensory processing differences. And who gets to judge and decide what is a small or big problem for another person? Size of the problem gaslights Autistic children's distress that non-autistic people cannot comprehend. It invalidates and ignores the child's struggles which are often misunderstood and ignored..
Authors of Size of the problem which comes from Social Thinking (a Social Skills intervention) say "Sometimes our feelings about a problem are much bigger than the problem itself!" and "Our reactions are larger than the size of the problem this can create a new problem".