Why The Universal Credit System May Be A Poor Fit For Autism

Written by Steve Thomas, M.Sc.

N.B., The following article is based upon the UK benefits/ welfare system only.

As an unemployed ‘Aspergers service user’ the benefit/welfare system has always felt too dichotomous – either someone is ‘fit for work’ or they are ‘disabled with a need to justify’ impairments. This distinction in itself poses real challenges because of how Autism Spectrum Conditions have no ‘one sizes fits all’ – people can simultaneously be highly intelligent and yet unable to live independently or they can ‘function independently’ irrespective of place on the spectrum (severe, moderate, minor and major support needs) since there is no guarantee that intellectual capacity or social functioning will even be completely affected at debilitating levels.

This absence of defining boundaries dovetails with my next concern; if people are truly honest what can an employment advisor or ‘job coach’ be expected to offer in terms of support for such atypical autism challenges (social impairments, forming routines and emotional regulation challenges for example) when so few have more than a cursory knowledge of ASC’s, often not even trained in active listening skills or how to correctly interpret ‘excuses and barriers’. As someone that has been unemployed in three different Job Centres across the country, the picture is often no better in the North-West or South-East of England; even designated disability advisor’s training (since phased out in Job Centres) is mostly experiential or limited by employment mandates and funding available (i.e. x amount of people off unemployment benefits each quarter).

If I am honest, the question few Job Centre staff ever answer is what effect limited (and often insufficient) coach support even has on those seeking employment or the right to contribute to society in some way. In the past being referred for employment support programmes* but in reality finding that 2 of 3 tried struggled to support my ‘autistic, yet degree educated’ needs, leaving me with a new set of problems: ‘seeming too capable’ and being more educated than supporting staff, as someone that learns things quickly but struggles to fit job titles.

*The Shaw Trust, an approved 8 week internship and questioned about my desire to join the Work Choice Programme – all intended to facilitate paid employment or decrease employment barriers.

Leading onto my next point – if someone seems ‘too capable’ or their challenges are not directly visible what safeguards exist to stop advisory employment staff’ from applying excessive pressure, ascribing their own definitions of ‘job suitability’ or downplaying immediate needs such as continuity and needing advanced notice, sensory intolerances or preventing overwhelm (‘meltdowns’) that can seem ‘abusive or aggressive’ to the uninformed. More so, in light of how financial penalties are applied for missing appointments, not meeting allocated job searching hours, failing to meet key job seeking commitments prescribed and how advisor’s can (but should not!) request in-person meetings at short notice, according to Universal Credit (housing benefit and unemployment benefits combined) and Job Seekers Allowance guidelines.

From an autism perspective there is a great deal of room for possible abuse of power and ‘helpful support provisions’ if staff do not (or choose not to) consider that autistics’ may need structure NOT ‘timekeeping help’, have genuine reasons why retail, industrial or healthcare roles may be unsuitable and may need more time to express themselves more clearly. Another challenge of the Universal Credit benefit is the three tier group allocations* with some autistic individuals that may seem like they require no adjustment or job preparation support (even though they can access it immediately rather in the typical 6-12 months), but in reality this ‘excess of capability’ can lead to a greater risks of unemployment and covert discrimination from employment advisors.

*The 3 groups: work-preparation group (preparing for but not actively seeking employment, plus attending JCP meetings), limited to no work capability (no pre-employment tasks or JCP meetings), and employment-ready (applying for jobs and preparing for employment) –  and similar levels for physical incapability

Personally I am inclined to argue that more people could work (paid or unpaid) if more specialist support existed; if the gatekeeper system of accessing job support was more user needs-led, and if people were given more choices than the present (be seen as ‘sick and incapable’, struggling but unsupported or ‘fit for work’ after phased adjustment time). If anything every time I have volunteered in the past an ‘elephant in the room’ remains unvoiced; why are people still providing light admin, retail or group facilitation skills free of charge – should they not too be paid for 1-10+ hours of labour each week?

A parting question: why in 2015 (and beyond) are autism employment needs still not being met, worse yet why are untrained [disability-aware] employment advisors still deciding employment support needs without consulting autistic groups?

10 Key Reasons Why Autism Unemployment So high

Written by Steve Thomas, M.Sc.

By now it should be clear that autism is a developmental disorder affecting the senses (perceived more strongly or much weaker), the way language is processed (more literally), how autistic people understand verbal and non-verbal communication, with potential difficulties understanding ambiguous or less explicit instructions.

Before exploring the 10 main autism unemployment factors (as I perceive them) I will preface with a quote:

“autistic (and ‘being less employable’) is not who I am, it is what others choose to define me as when ‘being difficult’, more cautious and requiring more structure and certainty in advance, so I can function better, in accordance with my own unique talents.’

Job specifications are perceived and interpreted differently by autistics

The typical ‘essential, desirables and ideal/preferred’ competences format is often so ambiguously ill-defined – a non-autistic individual may be better at cherry picking skills or experiences they actually have (or could learn later/indirectly know) but for autistics prone to focusing on small pieces of information it can be harder to see the bigger picture (i.e. what they know and can demonstrate). In particular job descriptions that don’t even match job titles assigned can be very problematic for autistic individuals seeing such groupings as illogical, with a greater risk of missing actual job opportunities.

Autistic individuals may not seek further confirmation or easily misinterpret information

Some might suggest this is a Theory of Mind challenge (difficulties interpreting intentions or meaning implied behind communication), resulting in language being taken literally with employment opportunities being missed because key information is misunderstood. Personally as an autistic individual I find that just two words misplaced or absent can be very costly, affecting how I interpret my own potential suitability for roles, influencing perceived suitablity for 60% of a job description – anything official or of consequence just gets read more literally for me.

Autistic people becoming self taught ‘experts’ in a subjects with less easily measurable experience

Many people with autism are known to ‘fixate’ or ‘obsess’ over special-interest topics, spending 10’s and 100’s of hours just reading about one topic (or practising one interest), compared to non-autistic people that may lose interest quickly or only learn what is necessary.

Within the STEM fields this single-minded focus contributes to success, however for those (like myself) that change career interests suddenly and (for examples sake) start reading advanced legislations and vast amounts of Psychology before applying for jobs we fall into the category of ‘paper experts with no experience’ – thus finding suitable employment becomes harder (many employers don’t like taking risks unfortunately!).

Difficulty knowing whether to disclose an autism diagnosis

Some might say that this only matters at the interview stage but in reality it can be daunting (and disheartening) to keep applying for jobs and be questioned about possible reasonable adjustments we may seek – often before even being offered an interview or as a ‘diversity and inclusion initiative’ where we in essence get interviewed twice (by cell-phone and in-person).

A related point – processing information by phone can be difficult for autistics

Even for the most empathic or emotionally aware autistic individuals, interpreting nuances of unseen non-verbal communication can be exhausting with a risk of disadvantaging individuals, that may otherwise thrive if interviewed in person. In such an artificial context so much information is conveyed rapidlyincluding pitch (volume) changes to denote mood or interest levels, active or passive language used for emphasis, threads of information, speaker energy levels, likelihood that someone is frowning or smiling, likeability, passion and even attitudes that convey key information (much more information conveyed in a 5-20 minute conversation).

As ‘more rigid thinkers’ autistics may not realise their skills are unsuitable/outdated – until told

Anecdotally speaking, I once knew an autistic engineer that had spent over 10 years learning one technology, then one day his company closed his department, (too late) realising that his knowledge had become obsolete and unmarketable in its current form – but for him his specialist interest had become his reality. Sometimes it is this straight-line focus that can stop autistic people re-skilling when all the signs are there, plainly seen by others (cost vs. efficiency, peers that distance themselves, declining tasks allocated or low team morale etc.).

Managing social expectations is less precise if autistic

This is related to social rules and following instructions. Some autistic individuals may take instructions or words literally, suddenly appearing aggressive, overly affectionate or reckless (a common example may include: ‘use your own initiative’ or ‘tell me exactly what you think’), not always knowing how to manage personal boundaries or needing more explicit guidelines to respond appropriately (i.e. correct emotional responses or understanding business etiquette).

Finding truly disability inclusive employers can be difficult

Many hiring companies are not as autism-friendly as required (yet!). From an autism perspective cramped office spaces, flickering bright lights, poor ventilation, noise, needing more time or spaces to decompress (de-stress or take mini breaks to recover) and needing more concise information (with advanced notice) seems to be a self evident truth but for some employers these reasonable adjustments may be too cumbersome, either being ignored or becoming exclusionary, causing the autist to ‘resign unexpectedly.’

A fine line between advising, training and forewarning employers

Just because an autistic person has informed a potential employer about their condition in advance there is no guarantee that prejudices, stereotypes and assumptions about autism will be addressed – some do become workplace autism/disability advocates with great success but for others cultures of indifference can exist at management levels. Recalling my own past experience of autism disclosure and attempts to raise staff awareness – efforts fell upon deaf ears being ‘positively discriminated’ told that I am paid to do a job nothing more – 6 weeks off for stress sickness and no changes until I left (some may not be so aware of illnesses triggers).

Not being supported or offered autism-specific careers advice

A complex topic in its own entirety, likely to create controversies and confusion for many. Ideally more teenage-adulthood transitioning services should exist to facilitate, support and encourage autistics into paid employment, at their actual mental and emotional level, in reality paths into paid employment are far less precise and structured if autistic.

This can be the case for any number of reasons such as mismatched industry-autism passions and interests, a need for greater understanding of owncompetencies, never learning how to market own talents properly, a need for more networking skills, no infrastructure in place to support study-adult life changes, the idea of too many ‘experts’ and not enough experience or simply poor skills matching with fewer mentors and less aware employers available.

As always I welcome others thoughts, insights, comments or further discussion (I may expand on this very abridged topic in the future if this post is popular enough).

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Inspirational P*rn and Autism (Not What Assumed!)

Written by Steve Thomas, M.Sc.

After reading about Stella Young‘s most memorable quotes (since passed in 2014- her biography can be found —Here–) the term that stood out was ‘Inspirational Porn’, defined as:

Any photos, quotes, and other sensory materials designed to inspire others to do better in their own life, because someone who else ‘has it worse’ – the catch? ‘Inspiration porn’ is usually ‘inspiring’ because an individual with a physical or hidden disability becomes a symbol of ‘accomplishment’ based upon their perceived limitations overcome – an object of inspiration to motivate non-disabled people to do better.

An example image from:http://sd.keepcalm-o-matic.co.uk/

This information led me to wonder how prevalent the phenomenon of ‘positive elevation of talents’ actually is in autism, in particular if any good or bad inspirational porn outcomes can be identified.

The Good:

Disabilities are starting to be recognised more, disabled people have more opportunities to correct stereotypes of their condition in-person, more public discussions are being held to decide if disability is the issue or poor societal awareness.

The Bad:

Individuals become symbols of a condition (objects), too much focus is placed on disability and daily events (i.e. doing a sport or having a family) that are typical but re-framed as ‘inspirational’, very divisive ignoring any hardships people may face, perpetuates a culture of one-upmanship and positive discrimination, disability success stereotypes are maintained making it difficult to see the whole person.

How this affects autism?

The main topic that comes to mind is education and attainment of employment, with figures that suggest that up to 80% of autistic individuals are Not In Employment, Education or Employment (NEET). This figure in itself is troubling for me as someone with autism that has been N.E.E.T., however what I dislike is the ‘feel good’ sensationalism that goes with finally achieving something so standard. Past examples (only the first was unique to me) include: ‘student achieves top grades in spite of impairments’, ‘autistic baseball player scores winning goal’, ‘[x person] did not give up goal of setting up a business in spite of dyslexia’, ‘non-verbal student with autism graduates from High School after years spent not communicating’ (all seem inclusive and encouraging but they can also be applied to mean ‘if a disabled person can do this what’s stopping you’ or ‘with our support even a person of disability can succeed too’) etc.

Personally I agree with Stella Young and Temple Grandin’s view that we should we should not idolise or define people based upon their label or ‘what they should be bad at’, feeling that we as individuals with difficulties and impairments should be able to define ourselves (by our own names for example), rather than being given titles like ‘autistic genius’ or needless inspirational praise for representing ourselves, our achievements or tasks we accomplish (irrespective of our conditions).

For those interested the original article’s Ted Talk of interest can be found at: http://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much

The next topic will discuss what I consider to be the 10 most pervasive difficulties in securing and maintaining employment as a person with autism.

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Autism and The Elephant in The Room Unvoiced…

Written by Steve Thomas, M.Sc.

As someone that experiences autism challenges daily a key point I don’t discuss often is fragmented identity, with some days (and weeks) spent feeling like a collection of selves: my true core self, ‘what is autism specific’ and ‘the third-hand self.’ For many without autism, an impairment or a disability the idea of a third self might sound strange but this ‘self’ is the voice we as people require to seek reasonable adjustments in the workplace, self advocate to ensure that our needs (and conditions) are better understood and to ensure that less informed individuals don’t misinterpret our intentions or downplay why our basic needs may differ.

In the case of autism the voice of self advocacy and equal opportunity has to be very strong, in light of how mental health issues are highly prevalent in autism with as much of 8/10 people at risk of being unemployed (or underemployed) and how something as simple as a flickering office light can be the final straw needing more daily sensory breaks to avoid ‘melt-downs’ or fatigue. As a person with atypical differences (often not understood) my central tendency can be to speak or educate others in the third person to get others to understand, with examples such as: ‘my autism…’, ‘this is autism specific..’, ‘I need x to support x autism challenges..’, ‘autistic people do this…’, ‘my senses are heightened because…’

The main risk can be over-identification with impairments at the expense of self expression and self identity (the core self), also the reality that others may have poor awareness of others needs, assuming that everyone experiences things the ways (i.e. noise/volume, spoken or written language, and not needing time to adjust to change of routine). Another risk is unconscious accentuation of autistic impairment traits when over-tired or anxiety-ridden, with less informed individuals that start to only see ‘what is different’ and ‘this seems to be a problem I don’t understand’, actually seeing people try to normalise (poorly), ignore or pathologize others because they themselves have entered survival fight-flight mode.

If I am honest the idea of self-guided self advocacy and The Social of Disabilityhave never really sat well with my need to be an individual and to function at the level I require, both as someone with High Functioning autism and as an individual too. For me the difficulty has always related to the idea that autistic people must become experts in their own symptoms and that empowerment should come from expressing our needs and differences – not always the case, rather than the idea others actually have a basic understanding of autism or neuro-diversity in general.

It is my view that both autistic and non-autistic should be better educated in ASD’s, but not at the expense of self identity, feeling like they are over-educating others or if a person ‘needs to justify’ autistic traits  to feel accepted. As an individual it has always like a calling waiting to be heeded to share first-hand autism insights for those that can’t, don’t know to or won’t self advocate for themselves as individuals with autism or Aspergers – ‘knowledge is power’ after all – more so when self advocacy can be exhausting, especially if wanting to not educating others or hoping others have an awareness of autism in advance.

I welcome any thoughts people may have about this topic.

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