To What Extent Do Autism Theories Explain the Poor Social Outcomes for Those on the Autism Spectrum?

To what extent do autism theories explain the poor social outcomes for those on the autism Spectrum?

(Word count 5097)

 

Many adults may self-identify as being autistic but a formal diagnosis of Autistic Spectrum Disorder (ASD) depends on a medical diagnosis. In the UK, the main diagnostic criteria used are found in The Diagnostic and Statistical Manual of Mental Disorders (DSM 5) and The World Health Organisation’s (WHO) International Classification of Diseases (ICD 10). Both criteria centre on The Triad of Impairment put forward by Lorna Wing and Judy Gould in the Camberwell study in 1978 (Beardon 2007).

Wing and Gould identified a cluster of impairments in children who were not sufficiently ‘classically autistic’ to be diagnosed according to the prevailing diagnostic criteria of the day as: Impairments of Social Communication, social interaction, and rigid or repetitive thinking. This cluster (or Spectrum) became known as the Triad of Impairments (Wing 2000).

Beardon (2007), whilst recognising the Triad of Impairments as being at the ‘cutting edge’ (Beardon 2007 p.1)of the understanding of autism at the time, also outlines the many difficulties in viewing autism as a disorder or as a collection of Impairments but argues that the only reason we use the term ‘disorder’ in connection with autistic characteristics, is that neurotypicals (NTs) form the majority, and that consequently, ‘difference’ would be a more appropriate term.

However, the medical model views disability as a deficit when measured against the NT norm, and despite joining together two of its categories in the revised DSM 5 criteria, the Triad of Impairments continues to dominate diagnosis and the professional understanding of the autism spectrum.

Breakey (2006) argues that the social model challenges the dominant medical model and clearly shows that ‘disability is caused and defined by societal barriers which take little account of people’s impairments and which prevent disabled people from participating in social, cultural and economic life.’ (p 26). As a result, autistic people are denied access to services such as education and employment.

This essay will examine how the existing theories of autism contribute to poorer social outcomes for autistic people. The statistics demonstrate that autistic people have highly restricted access to work, education, healthcare and relationships, and, have a much higher suicide rate than the population average.

This will involve critically examining the prevailing models of autism, namely: the medical and social models as well as critically evaluating the cognitive theories which underpin current understanding. Central to the argument is that the negative outcomes associated with being autistic in UK culture, are primarily caused by social factors (as opposed to being part of autism).

To that extent, I will identify my position as being closer to the social model of autism and disability than the medical model. To qualify that position I will identify an issue, if not of the social model, then certainly in its implementation (or absence of it).

The medical model is based largely on the historically prevailing cognitive theories of autism, which are: Theory of Mind, Executive Dysfunction, Central Coherence Theory and the Empathising-systemising Theory.

Each will be described and critically examined for their strengths and deficits as well as their uniqueness, universality and specificity.

In analysing how the cognitive theories may lead to worse social outcomes for autistic people (employment, relationships, education, suicide) I will, due to word count restraints, focus on eye contact as one example of how a common social difference of autistic people can, and does, lead to considerable social disadvantage.

The Medical Model and Social Model.

Autism has historically been seen as a condition or a disorder that people have, which needs to be cured or treated. Many autistic people are now challenging this view, and the language used, insisting that autism is not something they have (like an illness), but, as something they are (Sinclair 1993).

The ‘autistic characteristics’ which NT people identify as conditions, are actually essential components of their person-hood. However, the prevalent view of autism, especially by medical professionals and diagnosticians continues to see these characteristics as conditions, or disorders.

Breakey (2006) argues that the Medical Model of autism, sees the autistic person’s characteristics in a negative way, as ‘disorders’ or ‘deficits’ and subsequently views the autistic person as the source or location of the problem. This leads to the need for medication, conformity, and, socially acceptable behaviour regardless of the reasons and causes of that behaviour.

In contrast, the ‘Social Model’ sees the problems faced by autistic people (and disabled people in general) as being located, not in the individual, but, in the barriers present in the society they live in. For example, a person who has a mobility difficulty, is not disabled by their lack of mobility but by a society which has inadequate wheelchair access, which causes that person to experience serious difficulties.

Similarly, an autistic person who is unable to make eye contact (identified as an impairment by the Triad of Impairment and the DSM 5 diagnostic criteria) because of the distress that this causes is only going to experience this as a problem, when living in a society where eye contact is seen as essential to communication, and, necessary to accessing life opportunities or social progress such as employment and education.

One issue of the social model is that, even though it is correct in asserting that disabled people would benefit from society adjusting (rather than insisting that disabled people adjust), that is not happening to anywhere near the extent it needs to be. Instead society is adopting a flawed ‘support approach’ whereby, rather than removing the blocks to disabled people, it has set up a financially lucrative support industry. Mike Oliver, the originator of the term ‘social model’ (Oliver, 1983 & Oliver, 1990), has recently condemned many of the ‘big’ disabled charities, as being “parasitic on the lives of disabled people, and their attempts to reposition themselves as defenders of disability rights are an attempt to disguise this” (Pring 2017).

That issue, of course, is not a flaw of the disability model per se, but, of society’s inadequate implementation of it.

 

 

 

 

 

Cognitive theories

1. Theory of Mind.

The theory of mind (ToM) hypothesis states that autistic people fail to “impute mental states to themselves and others” (Premack & Woodruff, 1978, p. 515 in Rajendran et al.2007). This has been established in a variety of tests, usually involving scenarios with dolls, where one doll in the scenario knows the location of an object, while the other believes it is elsewhere. In these tests, NT children generally can locate the object, when asked, according to the ‘belief’ of the relevant doll. In contrast, most autistic children tested located the ball where it actually was, rather than the location requested (where the relevant doll would believe it to be).

One criticism of ToM is that it is not universal- though 80% of autistic children failed the test, 20% passed it (Happé 1994 in Rajendran et al.2007).

ToM is a construction which is based on the hypothesis that NTs have a ToM which enables them to “impute mental states to themselves and others” (Premack & Woodruff, 1978, p. 515 in Rajendran et al.2007). This theory was then applied to autistic people and despite helping with understanding the social and communication difficulties in autism, does not account for the non-social features which can be seen in executive functioning and sensory integration differences. It also does not explain why some autistic people find difficulties in responding to another person’s emotions (Grandin, 1996). Furthermore, ToM may not be specific to autism: other clinical conditions such as schizophrenia (Corcoran & Frith, 1997) or narcissistic and borderline personality disorders (Fonagy, 1989), conduct disorder (Dodge, 1993), also evidences a lack of ToM so specificity may not be present

Beardon, L (2012) in Exploding the Myths of Autism, argues that while autistic people may lack a ToM, the lack is for an NT ToM and that whilst NTs present as the majority, this does not necessarily mean that NT ways of processing are right in any absolute sense. This identifies a clear bias, in that, research is based on the notion that NTs have a common ToM only for other NTs. Most autistic people would attest (and have done), in numerous personal accounts that NTs lack a ToM for autistic people.

 

Beardon (2012) also points out that the fact that there are so many conferences on autism, and education programs trying to teach NTs about autism, indicates that NTs lack an intuitive understanding of autistic people’s states of mind, and, therefore, lack a ToM for autistic people (As, if the contrary were the case, there would be no need for programs and conferences to try to teach them it). This means that ToM issues are not unique to autism.

Milton (2012) supports this view by putting forward the notion of ‘the double empathy’ problem, stating that this is experienced by both NTs and autistic people, and that it is a ‘double problem’ (Milton 2012, p884), because, though the autistic person lacks empathy for the NT, equally, the NT lacks empathy for the autistic person. Milton cites the double empathy problem as being mentioned by other ‘autistic writers’ (Sinclair, 1993) and non-autistic writers such as (Hacking, 2009) (in Milton (2012).

This view is supported by Hodge & Chantler (2010) when commenting on the common view that autistic people have a problem with empathy: “We agree, the problem is that people without autism find it difficult to empathise with the way the world is experienced by those that do have the syndrome” (p. 9)

Another bias of ToM is that it focuses only on autistic characteristics as deficits. My observation as an autistic person is that a strong case can be made for directing the same kinds of criteria to NTs, as this will highlight their deficits. (Beardon (2016) points out [at 35 minutes 35 seconds] that if a group of NTs were asked to work out what a group of autistic people are thinking/feeling, they would fail the ToM test).

A further criticism of ToM which supports the notion of an autistic ToM is that autistic people can (and do) have a much better capacity for a theory of mind of other autistic people, than the majority of NTs (Beardon 2007).

Given that NTs live in a social world that is designed by NTs, they have very little reason/incentive to have a ToM for autistic people. “One could say that many autistic people have indeed gained a greater level of insight into non-autistic society, and more than vice versa, perhaps due to the need to survive and potentially thrive in a (non-autistic) culture. Conversely, the non-autistic person has no pertinent personal requirement to understand the mind of the ‘autistic person’ unless closely related socially in some way.” (Milton 2012 p.886)

This is, arguably, a specific example of a general principle whereby, in unequal societies, ‘structural violence’ exists. Where a ruling class dominates an underclass (rich/poor, masters/servants) those who are dominant have no reason to acquire a ToM for those who always do what they are told, but the opposite is not the case- the oppressed class must have a ToM for their rulers, so as to be able to predict which behaviours are likely to lead to aggression from them (Graeber 2015).

Graeber (2015) discusses scenarios where systemic inequalities are so embedded in a culture that they are effectively invisible, pointing out that in those scenarios, the oppressors don’t, because there is no need, do the “interpretive labour” necessary to ‘understand’ or, ‘have a ToM of’, the oppressed.

Thus, in 1950’s America, there existed a culture of jokes based on the impossibility of understanding the minds of women- it being the case, due to hugely imbalanced social circumstances, that men had no need to do the work necessary to understand ‘their’ women. Whereas, on the other side, it was very much in the best interests of women, having little/no access to independent incomes/resources, to do that work.

Social structural inequality thus always puts the onus of ‘understanding the other’, on the oppressed party i.e. the employee, not the employer, the servant, not the master, the female, not the male (in patriarchal cultures). Graeber (2015)

I see the same mechanism in operation between NTs in positions of authority over autistic people.

For an example, from my personal experience, see Appendix II

Chown (2017) supports the view that the onus is on the autistic (minority) person to do the work of understanding (developing a ToM for) the NT (majority) people, by pointing out that Milton (2012) is not suggesting that NTs are necessarily less capable of developing a ToM for autistic people, but, that autistic people tend to be more capable (of developing ToM for NTs) because (echoing Graeber above) it is necessary for them to do so, for survival.

In terms of research to support this. Sasson et al (2017) indicates that three studies have indicated that NT’s tend to make snap-judgements of autistic people, based on things like appearance, gaze, timing etc, and tend to judge them as ‘odd’ and go on to not engage in social interactions with them. Behaviour like that constitutes a causal reason why NTs have very poor ToM for autistic people

2. Executive Functioning Theory.

Executive functioning (EF) was constructed in the 1970s as an umbrella term to describe a group of cognitive processes, although its origins can be traced back to the 1840s. It is used in planning, controlling and focusing attention, switching focus from one task to another, and, working memory (Kosno 2015). Executive Functioning is associated with the frontal cortex of the brain, as damage there demonstrates issues associated with executive functioning.

Chown (2017) cites rail-worker Phineas Gage who suffered extensive damage to his frontal cortex in a work-related head injury, and, consequently, became disinhibited/hyperactive. Goldstein et al. 2014 point out that these characteristics are common in those with injuries to the frontal cortex. This well documented incident led to doctors connecting the role of frontal lobes in executive functioning.

Research during the 1990s examined the link between EF and autism.  In 2004, Elisabeth L. Hill summarized the research and concluded that many, but not all autistic children had executive functioning difficulties. Dys-executive functioning, whilst being recognised as a major difficulty for many autistic people is not therefore considered a defining feature of autism. EF is consequently rarely assessed and is not included in the diagnostic criteria which focuses more on social and communication difficulties. As EF impacts significantly on skills which relate to education and employment, it could be argued that the lack of focus on EF in autistic people disadvantages them within the wider society.

Many of the studies used people who also had intellectual learning disabilities in addition to being autistic, where the executive functioning issues could have been due only, or mainly, to the learning disability (Chown 2017). In addition, many/most of the studies were on autistic children (whose cognitive development may have been delayed), not adults, and also individuals who also had intellectual learning disabilities in addition to being autistic. In these instances, the executive functioning issues could have been due only, or mainly, to the learning disability (Chown 2017).

Russell (2001) in Hill (2004) in Chown (2017) offers the criticism that the arbitrary nature of the rules typical in EF tasks cause particular difficulty in children who are autistic, with Hill (2004) pointing out that task with logical rules are passed by autistic children. Grandin (2017a) makes a similar point in an FAQ on her website concerning autistic children who try to escape tasks-

“If the child is trying to escape from a task, you need to make sure the task is not stupid.  An example of a stupid task would be making a brilliant 8-year-old do baby math drills.  He/she should be given the more advanced math book.”

As an autistic person I very much agree with this, as many of the things I have displayed avoidance behaviour towards, have been tasks that I perceive as being stupid/rote/easy. NTs, unfortunately, seem prone to assuming that a person who is highly adept at something, will find completing very basic tasks in that field, easy. In reality, and, using a phrase I have found to be very common in autistic people, they will more likely perceive it as being asked to ‘jump through hoops’ and, consequently, experience it as extremely stressful and/or refuse to do it. In such instances, what is interpreted by NTs as a lack of EF is better described as the unsuitability of the task for the level of ability of the autistic person.

Given that not all autistic people experience executive functioning difficulties and that EF difficulties also occur in ADHD, obsessive compulsive disorder, schizophrenia and Tourette’s syndrome (Hill 2004) then the theory cannot be said to be specific or unique to autism. Nor can it be said to be universal (Rajendran and Mitchell 2007)

3. Weak Central Coherence Theory

Central Coherence Theory was developed by Uta Frith and Francesca Happe in 1994 with central coherence being the ability to see the ‘big picture’.

Frith and Happe concluded that autistic people have weak central coherence, leading them to miss the big/global picture and fixate on small details

In 1943 Leo Kanner stated that a core feature of autism was an ‘inability to experience wholes without full attention to the constituent parts’ (Happe & Frith 2006, p1).

Weak central coherence in autistic people is generally seen as leading to deficits such as-

1. Inability to generalise (Graham 2008)
2. Issues multitasking and getting through processes consisting of a series of sub-tasks, often leading to procrastination and getting ‘stuck’ on one sub-task (ibid)
3. Strong attachment to the known, a need for sameness and a great reluctance to deviate from established routines (ibid)
4. Anxiety when having to make choices (ibid). In my work with autistic young people (teaching) their support workers often request that I refrain from offering the pupil more than 2 options to choose from as it can cause serious stress.
5. Pre-occupation with unimportant small details to the detriment of attending to the thread of a discussion. I am often picked up on this, as, if, in a group discussion, someone says something that is false, my innate tendency is to correct it/discuss it, whereas, from the perspective of others in the group, I’m fixating on a small/unimportant detail at the expense of the discussion.

From personal experience, I would criticise the view that autistic people have any kind of deficit with regards to their central coherence in 2 ways.

Firstly, an ability to focus on detail is not a negative, much of the stress in my existence in this NT world, has been due to NTs in positions of authority lacking an ability to see details. For an example, see appendix I.

Similarly, Grandin (2017b) mentions that, had she seen the plans for the Fukashima nuclear reactor, the disaster would not have happened, because, due to her ability to see important details which NTs miss due to being distracted by the surrounding ‘big picture’, she would have immediately flagged up the fact that 2/3 of the plants emergency generators were below sea level and very vulnerable to flooding. And, relating to education – “My kind of mind isn’t going to graduate, and you need me,” Gradin told LA Times. “Because my kind of mind is the one that would say, ‘Hey, if you put the generators for the emergency backup for the Fukushima power plant in the non-waterproof basement, you’re going to be in trouble.’ I can’t design a nuclear reactor, but there’s no way I would’ve put those generators there unless I had reinforced walls, submarine doors you crank shut.” (quote from Grandin 2017b)

(see Synolakis, C. and Kânoğlu, U. (2015) for independent engineering research backing up Grandin’s claims).

A second criticism of central coherence theory concerns the claim that NTs see the ‘big picture’. I would question the specificity of central coherence as a theory, as, in my experience, NTs routinely miss seeing ‘big pictures’ that are blindingly obvious to me (an autistic person), to such an extent, that I am led to conclude that NTs are just better (than autistic people) at seeing some big pictures (generally social ones), demonstrating that central coherence is not unique to autistic people.

Rajendran (2007) says Central coherence is not universal, citing Norbury (2005) who found deficits only in autistic people who also had linguistic difficulties. This also casts doubt on the specificity of central coherence.

Frith and Happe later modified their original position by describing autistic central coherence not as a deficit, but a cognitive preference [Happe and Frith (2006) in Chown (2017)]. One of the big positives about Frith and Happe’s work is that it identifies that the underlying reason behind autism could be a different form of information processing, rather than a lack of cognitive functioning. However, because the research came from a medical model perspective, it inevitably compared autistic performance of tasks against the NT majority and looked-for deficits- hence the title ‘weak’ central coherence, rather than ‘superior’ central coherence.

In this view, autistic central coherence is “a detail-focused cognitive style” (Happe & Frith 2006, p17), that weak central coherence is not just a failure to see the whole but also “an outcome of superiority in local processing” (Happe & Frith 2006, p17).

Jespersen (2015) argues that both central coherence and ToM are limited in explanatory value as they are built around a disembodied/isolated ontology. This contrasts with the reality of autism, which they see as being an embodied experience. In the ToM experiments, the contents of the minds of others are not directly accessible, but internal and hidden, and can only be inferred by their external actions (De Jaegher, 2013).

Jesperson (2015), referring to Merleau-Ponty (2012), points out that, in contrast, learning can only take place as an embodied being in a world, to try to separate out the mind and view it as an isolated entity is a philosophical error. What are labelled by the conventional theories as being ‘inappropriate’ behaviours are, in many instances, simply ways-of-being that autistic people use to cope with being in a hostile environment, and, in a learning context, it is better for instructors to focus on such behaviours being inherently meaningful for the autistic person, rather than labelling the behaviours as inappropriate.

4. Systemising-Empathising Theory (Baron-Cohen, 2009)

This theory suggests that we all lie on a continuum, defined, at one end, by systemising, and, at the other, by empathising. With NTs being more on the empathising end. It is presented as a cognitive style (rather than his previous work on ‘deficits’) and tested by using the ‘Systemising Quotient’ and the ‘Empathising Quotient’ (which are now incorporated in to the NICE guidelines for adult diagnosis).

This was essentially an attempt by Baron-Cohen to modify his original theory of mind stance to account for its lack of universality (Rajendran et al.2007). It moves away from presenting TOM as a deficit, and posits it as a delay (Rajendran et al.2007)

In the light of issues mentioned previously with ToM, it is worth pointing out that, just like ToM, empathising-systemising theory shares the same assumption that NTs are better at empathising, when, it can be argued that NTs are only better at empathising with other NTs (Beardon 2012, Beardon 2007, Chantler 2010, Chown 2017, Sasson 2017).

In examining theories critically, it is important to identify potential vested interests or conflicts of interests that the authors may have. For example, studies purportedly showing the benefits of a given nutritional supplement, are financed by companies selling the supplement. In autism research, such distorting influences are often subtler, perhaps an obvious example is research into the efficacy of ABA (Applied behavioural therapy) therapy, when financed by organisations that themselves provide ABA therapy.

In the case of Systemising-Empathising Theory, it could be argued that it was very much in the interests of Baron-Cohen, at a time when ToM was coming under increasing criticism, to come up with a new theory, and, that a new theory which spoke about ‘differences’ or ‘styles’ (of processing/thinking) rather than deficits, would have more appeal to an audience that was increasingly in favour of a social model of disability.

Social outcomes for autistic people

Social outcomes for autistic people are not good, it is generally accepted that only 1 in 5 are in employment, only 1 in 5 in a relationship, and, autistic people are 9 times more likely to commit suicide than the national norm (statistics vary, but these are on the lower end of estimations).

‘31% of adults with autism or Asperger syndrome are involved in no social activities at all’- (Barnard et al 2001 p20). ‘49% of adults with autism or Asperger syndrome are still living at home with their parents.’ (Ibid p7)

The recent ‘Swedish study’ showed that autistic people with an associated learning disorder die 30 years younger than the general population, and, that autistic people without a learning disorder died, on average, 12 years earlier, with suicide being a leading cause of death (Hirvikoski et al, 2016). Suicide was the only cause of death higher in high-functioning vs low-functioning ASD, corresponding to the findings of Cassidy et al (2014) showing the high prevalence of lifetime suicidal ideation (66%) and suicide plans/attempts (35%) in adults diagnosed with Asperger syndrome. Possible factors contributing to suicidality amongst autistic people include social disengagement and lack of critical protective factors including supportive social networks, life satisfaction, coping skills and, inability to access help and treatment due to the difficulties with social interaction and communication that are typical in autistic individuals (Hirvikoski et al, 2016).

At the same time, in the UK, under neoliberalism, disabled people in general, are greatly threatened. The ‘Black Triangle’ disability activist group has published several ‘Welfare Reform Death’ lists giving details of hundreds of disabled people who died, mainly through suicide, after having been assessed as being capable of work by ATOS (UK welfare reform deaths, 2014). Given that only 1-in-5 of autistic people are in employment, it is fair to assume that many of the remaining 4-in-5 are on benefits such as jobseekers, or the disability benefits administered by ATOS, and that therefore, a disproportionate number of the people on the Black Triangle lists are likely to have been autistic.

Due to word count constraints, I will, in linking to how the cognitive theories of autism affect social outcomes, focus on one specific autistic characteristic- eye contact. I choose eye contact because it is a well-recognised characteristic of autistic people that, by the standards of conventional NT society, the eye contact of many autistic people is judged to be deficient, and, by numerous personal accounts by autistic people themselves, the demands of conventional NT concerning eye contact, are a source of considerable stress, as are the consequent losses in social opportunity for those autistic people who can’t learn to engage in eye contact to the level required by NTs for job interviews, social interactions etc.

Eye Contact

It is well documented that many autistic people do not make eye contact, or, have eye contact which is not deemed sufficient by most NTs.  An example of how autistic eye-contact is judged to be deficient is seen in the (increasingly controversial) approach of ABA which regards it as something that can, and should be ‘fixed’ (George 2018). ‘Abnormalities in eye contact’ are also listed in the DSM-5 Diagnostic Criteria as a deficit (DSM 5 2018).

Much autism research has focused on eye contact, such as the “Reading the Mind in the Eyes Task” (Baron-Cohen et al., 1997). The study studied adults with Asperger Syndrome; High Functioning Autism; Tourette syndrome and NTs photos of eyes to see if they could infer a person’s mental/emotional state.

For control purposes, in the ‘Emotion Task’ the participants must infer mental/emotional states by looking at photos of whole faces. In this, the autistic participants performed as well as the rest, establishing that they understood basic emotional expressions.

Autistic participants fared considerably less well in the eyes-only reading task, leading Baron-Cohen et al to the conclusion that autistic people have a deficit in reading mental/emotional information from the eyes.

A criticism here, is that autistic people tend to avoid eye contact. McGlensey, M. (2017) lists some autistic people’s personal accounts of why they find eye contact difficult. These include- that eye contact ‘feels yucky/spooky’, ‘unbearable’, ‘confrontational’, ‘overwhelming’ etc. Studies have shown that, in autistic people, making/holding eye contact can cause abnormally high levels of subcortical activity (Hadjikhani, N, et al. 2017). This supports the claims of many autistic people that eye contact causes them actual distress. As this is the case, it follows that autistic people don’t have as much practice at reading information from the eyes as do NTs.

Thus, (assuming that the eye-reading abilities of NTs are at least in part, developed, rather than innate), the lack of ability of autistic people with eye-reading, would not be a deficit, but, simply due to lack of practice.

Thus, not only do social prejudices place autistic people at considerable disadvantage in accessing social opportunities, but the same prejudices seem also to occur in the theories of autism.

Regardless, of the reasons behind autistic people’s lack of eye contact, and, even if those reasons are justified, the fact is, lack of, or, ‘inadequate’ eye contact, will diminish a person’s chance of success in an interview, whether that is a job interview, or, a ‘relationship’ interview, and, thus accounts, at least in part, for the statistics concerning lack of job and relationship opportunities for autistic people.

It is interesting to note that several of the autistic people in their statements (McGlensey 2017) stress that ‘they are listening’ (indicating awareness/experience of NTs assuming that lack of eye contact equates to lack of attention) and that they actually listen better when not forcing themselves to look into eyes. Also, that they analyse their issues with eye contact as being due to excessive input, which may tally with the aforementioned high levels of subcortical activity mentioned by (Hadjikhani, N, et al. 2017).

See Appendix 3 for my own personal account of eye contact issues.

Conclusion

This essay has critically examined the current models and cognitive theories used to explain and aid our understanding of autism and identified several biases which, in conjunction with poor implementation of the social model, contribute to the poor social outcomes for autistic people. Poor social outcomes have been identified as being directly linked to external social factors, rather than an innate consequence of autism.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Appendix I

This is a letter I wrote following a process involving medical benefits which required me obtaining, as evidence of my conditions, several letters, one from my GP, the other 3 from a Sheffield specialist autism health centre. On finding all the letters contained errors sufficient for benefits organisation to declare them invalid (as evidence), I contacted the specialist autism centre and informed them of the seriousness of these ‘small errors’. I decided that as it was important to write up the specifics of the errors, that I may as well write the letter from the perspective of the manager of the centre, so she could modify it to her satisfaction, and, send it out as a memo to all staff, in order that similar errors would not occur with their future autistic clients.

Memo to all staff       Date:

From:

Recently a client of ours has contacted me concerning some errors in letters he had requested from medical professionals to submit as part of a benefit renewal process.

All 4 documents submitted as medical evidence for his PIP renewal were, when the client originally received them, found to contain errors that, if they hadn’t been spotted by the client, could have led to them being not acceptable as evidence by the DWP.

3 of the 4 were written by SAANs medical professionals, of these, one had an incorrect postcode and incorrect phone number in the header text, one lacked a date, and the other lacked a signature. The 4^th was from his GP and also lacked a signature.

The errors would have gone unnoticed and the letters forwarded to the DWP, had the client not noticed them himself. Had that happened, the resultant rejection of the letters by the DWP would almost certainly have led to serious distress to the client, and, quite possibly, serious effects on his mental/emotional health.

While I realise that time constraints mean that letters cannot always be gone through with a fine-tooth comb, I would request all staff to double check the following when writing letters-

1. who the letter is from and their official title/speciality

2. that the letter is dated

3. that the letter is signed

4. post codes and phone numbers (it’s very easy to get a digit/letter wrong in these)

Please be aware that many of the organisations that request these letters of evidence (e.g. DWP) issue their staff with guidelines to specifically check the above, and to reject any letters lacking one or more of them.

It is therefore in the best interests of our clients (and their mental/emotional health) for us to do the same.

The client has asked me to point out that the prevalence of such errors is far higher than most of us suppose- in his experience it is at least 50%, and, in this instance, was 100%!

(Luckily, in this case, the client spotted the errors, and had them rectified, so no harm was done, but, not all clients would have spotted them).

Appendix II

(A personal experience which demonstrates an organisations misuse of Data Protection legislation to block an autistic person (me) from making progress along a chain of necessary tasks that was causing serious frustration and putting stress on my mental health)

When engaging with an organisation’s (supposedly specialist in autism) receptionist over the phone. On encountering a block in an important (for my health) process, it was necessary for another organisation to receive a file of mine (containing my personal medical data) that was held by the first organisation.

I requested that they email it on, but, the receptionist said they couldn’t, due to ‘data protection’. I offered to give them verbal and email permission to do so. They said it was not possible, ‘data protection’ wouldn’t allow it. I knew this wasn’t the case, and got very upset, as their misunderstanding was delaying, unnecessarily, a process that had already been unnecessarily delayed multiple times.

After a verbal rant (I was having another ‘meltdown’), I hung up the phone, then called the Data Protection Agency. Unusually, for such a large organisation, they picked up the phone. I then told them what had occurred, and, they agreed with me that this was not a data protection issue.

Despite the original receptionist being utterly wrong, I was totally blocked by them.

(This was far from an isolated experience, being right, means nothing when an organisation, via its staff, has decided you’re not going to get what you are entitled to).

Appendix III

My personal experiences of eye contact issues.

My own experience as an autistic person is of being bullied and cajoled into making eye contact. It was made clear to me at an early age, by teachers and, later on, by jobcentre staff that my lack of eye contact was a weakness, and, that I must learn how to look at people’s eyes when I talked to them.

Whilst I can and do fake eye contact when dealing with strangers when I need to make a ‘good impression’, in the main I don’t force myself to do it, for the following reasons:

1. making eye contact puts me at a disadvantage (lowers my ability to concentrate/focus)

2. it’s unpleasant and has a negative effect on my already low mood

3. it’s wrong for NTs to pressure us autistic people into using it- they are the ones who are supposedly socially skilled, they should make the adjustment here- after all, it’s just a simple matter of not putting inappropriate labels of ‘shiftiness’ etc on us

4. Making a stand, making a point, educating them. Oppressed Blacks, homosexuals and women didn’t get where they are today (protected by legislation) by continuing to, after they realised they were being oppressed, behaving in the same subservient fashion they did before

So, for example, when I had an interview at a specialist college whose pupils where on the spectrum, I announced that, being autistic, I would not be making much eye contact, and the reason was, that I listen better, when not doing so. I like to think that that made what could have been seen as a militant stance, instead come across as reasonable, and productive (I did get the work).