Spectrum 10K, started more than 18 months ago to collect 10,000 DNA samples and medical histories of Autistic people across the UK. There are some valid concerns around the efficacy of this work but also the theory and tools which are used within it.
Some worrying tools and theories used within Spectrum 10K–
- The Autism Quotient (AQ)
- Social Responsiveness Scale 2 (SRS-2)
- Extreme male brain theory (EMB)
- Emotional quotient (EQ)
The Autism Quotient (AQ) is a non-clinical investigative tool based on the DSM 4 (American Psychiatric Association [APA], 1994) which suggests a triad of impairments for Autistic people. The AQ does not follow current psychological findings which characterise autism by distinct social communication, behaviours and sensory profiles (APA, 2013). This tool remains outdated by modern clinical standards, undermining the construct validity of research which uses it.
The Social Responsiveness Scale 2 (SRS-2) does align with current understandings within the DSM 5 (APA, 2013) and is said to identify social ‘impairments’ whilst also quantifying their overall ‘severity’ (I shall explore the choice of language later in this review). The SRS-2 can be completed efficiently by parents and carers and is sensitive enough to detect subtle characteristics which can be rated over time to form longitudinal evaluations. While many autism assessments observe behaviour in the laboratory, the SRS-2 looks at reciprocal social behaviour as it occurs in natural everyday settings. Despite the potential for more accurate evaluations, the Social Responsiveness Scale 2 cannot be used as a professional diagnostic tool (Constantino, 2012). Furthermore, the use of parent reports may misrepresent the internal behaviour and attitudes of children, further stigmatising autistic youth who are often solely understood by their ‘impairments’ and ‘difficulties’ (Nabbijohn et al., 2019).
The Extreme Male Brain theory (Baron-Cohen, 2002) posits autism as overdeveloped male-typical traits such as logical thinking, high levels of perseverance and low emotionality (Baron-Cohen, 2002; Baron-Cohen & Hammer, 1997). The Extreme Male Brain theory (EMB) suggests that Autistic girls and women are hyper-masculine in specific aspects of their behaviour and cognition, supposedly related to elevated levels of foetal testosterone (Ayeung et al., 2009; Baron-Cohen, 2002; Baron-Cohen & Hammer, 1997). This theory frames boys and men, and all Autistic people, as having an ‘empathy disorder’ (Baron-Cohen, 2002). Furthermore, this explicitly reinforces gender stereotypes which strengthens the concept of autism as a male-only neurology.
Use of language and theoretical underpinnings:
Issues with language are reflected in theoretical underpinnings which essentialise autistic experiences as ‘empathy disorders’, related to the presumed inability to infer the mental states of others (Baron-Cohen, 1995). This proposed lack of empathy, found by using the Emotional Quotient (Beasley, 1987), is used by several studies as a marker for autism. The Emotional Quotient (EQ) measures Western concepts of typical emotional understanding and behaviour, pathologizing the experiences of Neurodivergent people who often experience and express emotions differently (Bird & Cook, 2013; Jack, 2011). The overuse of the EQ and empathy disorder theories is perhaps inevitable with the recent Knighthood of Professor Simon Baron-Cohen, who was awarded this honour for his services to people with autism (Brackley, 2020). His work is still considered essential to contemporary autism research, which suggests that empathy is a wholly Autistic ‘problem’ (Baron-Cohen, 1995).
The implications of these theories on the care and support of Autistic people is huge. The S10K project is based on these theories above, and many more worrying and harmful ones besides. When work is based on backwards thinking which implies all Autistic people are hyper-masculine, un-empathetic and disordered – this does not allow for good outcomes for Autistic people and our families.
Us Autistic people are seen as deficient, lacking, un-empathetic… even if you can’t see the jump from this understanding to eugenics, the outcomes for Autistic people based on these ideas is shocking. Put short, the S10K team do not care about you or your Autistic child.
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American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Association.
Auyeung, B., Baron‐Cohen, S., Ashwin, E., Knickmeyer, R., Taylor, K., & Hackett, G. (2010). Foetal testosterone and autistic traits. British Journal of Psychology, 100 (1), 1-22. Doi: https://doi.org/10.1348/000712608X311731
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Baron-Cohen, S., Wheelwright, S., Skinner, R., Martin, J., & Clubley, E. (2001). The autism-spectrum quotient (AQ): Evidence from Asperger syndrome/high-functioning autism, males and females, scientists, and mathematicians. Journal of Autism and Developmental Disorders, 31 (1), 5–17.
Baron-Cohen, S. (1995). Mindblindness: An essay on autism and Theory of Mind. MIT Press.
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Beasley, K. (1987). The Emotional Quotient. Mensa.
Bird, G., & Cook, R. (2013). Mixed emotions: the contribution of alexithymia to the emotional symptoms of autism. Translational Psychiatry, 3 (7).
Brackley, P. (2020, Dec 30). Queen’s New Year Honours 2021: All those honoured in Cambridgeshire as Prof Simon Baron-Cohen receives a knighthood. Cambridge Independent. https://www.cambridgeindependent.co.uk/news/new-year-honours-2021-all-those- honoured-in-cambridgeshire-as-prof-simon-baron-cohen-receives-a-knighthood- 9146893/#:~:text=Simon%20Baron- Cohen%2C%20professor%20of%20autism%20research%20at%20the,is%20knighted%20for% 20services%20to%20people%20with%20autism.
Constantino, J.N. (2012). Social Responsiveness Scale (2nd ed.). Pearson.
Jack, J. (2011). The extreme male brain? Incrementum and rhetorical gendering of autism. Disability Studies Quarterly, 31 (3).
Nabbijohn, A.N., van der Miesen, A.I.R., Santarossa, A., Peragine, D., de Vries, A.L.C., Popma, A., Meng-Chuan, L., & VanderLaan, D.P. (2019). Gender variance and the autism spectrum: an examination of children ages 6-12 years. Journal of Autism and Developmental Disorders, 49, 1570-1585.