EMILY LEES

What is the alternative to using PECS?

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 with software which contains LOTS of words and LOTS of different types of words e.g. Proloquo2go, SnapCore.

What's wrong with writing Play Goals?

Defintion of play: "engage in activity for enjoyment and recreation rather than a serious or practical purpose". Play goals are typically written to mould autistic children's play into what neurotyical play looks like and is rooted in neurotypical developmental milestones. Shaping, changing, moulding play is not play. Children should be allowed to play however they like and instructing children on HOW to play is behaviourism.

Source: https://autismlevelup.com/wp-content/uploads/VS_Play_Goals.pdf

Why does behaviour not always equal communication?

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/

Why is "Language Disorder" and "Social Communication Disorder" problematic?

The language '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 DLD/LD they must demonstrate significant difficulties in these areas, or, "children whose language development is not following the usual course despite typical development in other areas". Neurodivergent brains do not follow typical, neuronormative brain development. So then what? So based on this theory, are all autistic children language-disordered? Autistic brains diverge from these standardised expected norms, particularly in pragmatic language development, which is why such diagnoses are flawed and based on incomplete theory. This is especially true for the stigmatising 'Social Communication Disorder' often diagnosed in autistic children, who simply have different styles of communicating which work just as effectively between autistic adults as when neurotypical adults interact with each other (Crompton et al., 2020). Pragmatics is a huge topic currently discussed in the autistic community among researchers. Historical and current pragmatic language development research is entirely based on neuronormative brain, sensory, cognitive, and language development and draws conclusions based on typical milestones. Therefore, this theory discounts neurodivergent brains. They do not account for differences in attention, language, sensory, and cognitive development.

An example: People with LD are said to have working memory and word-finding difficulties. Well, these difficulties are highly common in autistic people which is well documented and something I struggle with personally. In fact, among my autistic and neurodivergent friends I haven't come across any of us who don't struggle with these things to some extent. The diagnosis of LD also does not take into account the variability of language difficulties that occur in different contexts or emotional states e.g. many autistic people experience losing access to spoken language in times of stress or dysregulation. Fatigue and burnout has a huge impact on word-finding, the ability to sequence thoughts and words in the right order and influences my ability to communicate successfully. How do these diagnoses factor in autistic Non-Speaking and minimally speaking AAC users? Selective Mutism? Echolalia and Gestalt language processing of language acquisition? Masking? Using word-finding and working memory difficulties, and the fact that there are huge differences in how neurotypical and autistic people communicate and use language, how does one differentiate between an autistic person with or without LD? Labelling autistic children as having disordered language and/or as being 'socially disordered' because their communication style and language presents differently than neurotypical children is hugely problematic and continues to perpetuate the wrong narrative that autistic children have social impairments, further marginalising an already marginalised group of people. Gemma Williams has written extensively on this, commenting that Damian Milton's The ‘Double empathy problem’ could explain the so-called pragmatic impairment.

Non-Speaking / minimally speaking autistic children could be determined as having a LD according to the diagnostic criteria based on standardised tests that aren't standardised on them. They don't account for their unique sensory / perception differences, their ability to be able to be tested reliably. Whenever we assess the child's receptive language in a functional context we use these tests and scores and judging them to be deficient based on their performance. 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 an autistic child has LD? Or Social Communication Disorder? How appropriate is it to attach these labels onto a neurodivergent child? This does not mean that neurodivergent children never have language difficulties that need support with. Nor does it mean we don't ever do any language work with these children. The point is, pathologising and diagnosing an autistic child with LD or Social Communication Disorder is problematic when we have an incomplete theory. Research is needed to study the pragmatic language development of autistic children.
Sources:
Williams, Gemma L.; Wharton, Tim; Jagoe, Caroline (2021): Mutual (Mis)understanding: Reframing Autistic Pragmatic “Impairments” Using Relevance Theory. Frontiers. Collection. https://doi.org/10.3389/fpsyg.2021.616664


Crompton CJ, Ropar D, Evans-Williams CV, Flynn EG, Fletcher-Watson S. Autistic peer-to-peer information transfer is highly effective. Autism : the International Journal of Research and Practice. 2020 Oct;24(7):1704-1712.

Why is Theory of Mind research flawed?

1. It has been completely de-bunked. 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 generally 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 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.

What's wrong with Social Skills Training?

Aside from the limited evidence and lack of generalisation to everyday contexts, it doesn't account for autistic styles of communication which have been shown to be just as effective with other autistic people as when neurotypical people interact with each other. Social Skills Training is based on neuronormative cognitive, sensory, and language development which means it is rooted in reinforcing the social skills of neurotypical children. The majority of autistic children accessing SLT services are supported by neurotypical professionals which means children are being told how they should socialise and interact by a neurotype who experience the world very differently than they do. They have no real insight into how it feels to live in a world which is not set up for them. Social Skills Training encourages autistic children to mask which causes social, sensory, and invalidation trauma. This causes mental health problems because of the mental, emotional, and physical labour that goes into masking for chronic periods, often resulting in meltdowns and burnout. Masking sends a message to children that in order to be socially accepted they have to hide who they are and suppress their authentic self. Also, masking is highly correlated with suicide in autistic adults, which makes sense when you consider the accumulation of years and years of suppressing who you are.

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.

Why is desensitisation / exposure therapy harmful?

The goal “shows increased tolerance of sensory input” is hugely problematic because desensitisation therapy is ineffective for autistic people, and actually harms them. The reasons for this is down to having a different neurology whereby we do not ‘get used to’ sensory input to which we are aversive to. This is backed up by research. So forcing us to eat foods we can’t tolerate the texture of, or making someone with hyeracusis sit in a noisy room with music blaring - we will never get used to this input.

Source - Distinct Patterns of Neural Habituation and Generalization in Children and Adolescents With Autism With Low and High Sensory Overresponsivity - Green et al., 2019

What is masking?

When an autistic person 'puts on a mask' to appear neurotypical and 'less autistic'. When an autistic person masks they suppress and hide their autistic traits like stimming, echolalia, and communication style differences that neurotypicals deem as socially unacceptable. Masking is a developmental, trauma response due to repeated experiences of being socially rejected. 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 appear "weird" to neurotypicals.

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).

Why should you never force an autistic child to make eye-contact?

Eye-contact can be physically painful for autistic people and anxiety inducing, due to us having a different neurology whereby it can cause excessive arousal in parts of our brains which neurotypicals do not experience. Remember: eye-contact is a social norm and completely discounts autistic cognitive, communication, and sensory development

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.

What are some examples of inappropriate, subjective, ableist goals?

• 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
  

What might be some examples of neurodiversity-affirming goals?

• 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 the prefer (AAC, verbally)
• For X to increase their self-advocacy skills in order for them to make their own decisions and choices in the school environment.
• For the SLT to establish a trusted therapeutic relationship with X through providing a nurturing, affirming, and safe environment in order to create emotional safety.
• Increase X's understanding of autistic and neurotypical styles of communication so that they can identify and describe a number of these differences.
  
  

What's so bad about teaching social scripting and rote phrasing?

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 in real-life scenarios they are most likely interacting with neurotypical people who do not accommodate them as the SLT / professional would, such as in a therapy session or artificial scenario; practising something with a safe person who gives you extra processing time, attunes to you, is a supportive communication partner and who responds to your cues does not happen often in real-life everyday contexts. 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 neurotypicals which means all that practice goes out the window and those scripts are hard / impossible to access in real time. These are also my experiences. I have spent hours upon hours over my life rehearsing conversations and when they actually happen, all is lost. I then beat myself up retrospectively for not being able to implement these phrases, further damaging my self-esteem.

Do autistic people have empathy?

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 neurotypicals do in the way we might use facial expression, gesture, and have a different communication style of how we convey empathy, and so it is wrongly assumed that autistic people lack empathy. 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)

If we don't teach Social Skills, what do we do?

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 McDonnel) to support with self-regulation. Collaborate with OTs, Clinical Psychology, Educational Psychology.

......and much more!

Why is Asperger's Syndrome not an appropriate term to use?

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 have Asperger's then you must have a "less severe" form of autism. The autistic community do not support sub-types of autism as it continues to perpetuate the narrative that autism can be measured on a linear scale and separates people into categories, leading to marginalisation and dehumanisation.

Why are High-Low Functioning labels offensive?

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).

What's wrong with the autism puzzle piece symbol?

Autistic people find it reductionist and stigmatising. The origin of the puzzle piece is from the National Autistic Society whereby a there is a picture of a child crying over an image of a puzzle piece. It suggests that autistic people have "something missing" which needs to be fixed or completed, like a jigsaw.

Why is there no "female autism" phenotype?

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

What do autistic advocates think about Tony Attwood?

He is not a figure that autistic advocates support. His disparaging comments around trans people: "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 also openly impersonates and mocks autistic people as a way to teach people about autism. Autistic advocates are campaigning against the concept of Asperger's Syndrome which he continues to heavily focus on, as well as use outdated terminology.
Sources:

• https://autisticadvocacy.org/2009/04/tell-tony-attwood-to-end-the-hate/

• http://www.thinkingautismguide.com/2012/10/the-last-place-to-take-your-autistic.html
• https://www.fierceautie.com/2020/08/autistic-history-tony-attwood.html

What's the problem with SPECTRUM10K?

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:

• https://autisticallysarah.com/2021/08/24/the-dangers-of-spectrum-10k/
• https://www.disabilitynewsservice.com/autistic-campaigners-anger-over-spectrum-10k-protest-lock-out-and-scare-tactics/
• https://aucademy.co.uk/2021/09/03/boycott-spectrum-10k-please-sign/

Why is National Autistic Society viewed as controversial by autistic communities?

NAS claim that they represent autistic people, however, many autistic people feel that they don't take responsibility for standing up for the community or represent their views as a whole. They often take neutral stances when issues arise which impact autistic people. The autism puzzle piece originates from NAS (see "What's wrong with the autism puzzle piece?"). They continue to advertise ABA and PBS practicitioner jobs when the autistic community are known for being vehemently opposed to ABA and PBS. Aside from ethical concerns, there is a lack of evidence for its effectiveness. NAS have a corporate relationships with charities such as Ambitious about Autism who run ABA schools.
Sources:

• https://theautisticadvocate.com/2018/02/the-curious-case-of-the-national-autistic-society-and-cures/
• https://intheloopaboutneurodiversity.wordpress.com/2019/11/28/good-autistic-advocacy-organizations-vs-bad-autism-charities/

What terminology should people use when referring to autistic people?

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
  
• https://neuroclastic.com/person-first/

Is autism a mental health condition?

No. It is a developmental disability. Mental health difficulties frequently occur alongside, however.