Autism in the Workplace - the TUC Guide

It appears that the TUC can only use the Social Model of Disability on political grounds, because it would appear the Social Model of Disability upholds sound socialist principles. Therefore it has to be the Social Model or bust.

Or is it just that Social Model has a nice socialist ring to it?

So they cannot entertain any other model in trying to explain autism in the workplace to union officers, and they'd rather dumb down autism to make it fit the model. Anything else it would seem is inconceivable.

That's all very well for the TUC, but if you are in difficulties with your employer, and you seek help from your union representative, he/she can only help you if the matter can be resolved using the Social Model of Disability. Anything outside that would be going against his/her socialist principles.

So once again we are in a no win situation.

Thank you, electra, for your feedback and perspectives, and good point about the "nothing without us about us" aspect of the TUC guide.

I'm trying to follow up various avenues to better understand how this came about. It would appear that the TUC guide has received widespread praise from all quarters (including NAS?). So it is very difficult to challenge a respected and widely endorsed document.

I still contend we know so little about what is needed to enable people on the autistic spectrum to hold down jobs.

I suspect that until recently it was generally assumed that many people wouldn't be able to take on long term employment, so there was no urgency to research how people coped in the workplace.

Now the Government via DWP and ATOS is forcing through a situation where many people are having to do work experience, or take jobs allocated for other reasons, or face penalties not least of which are loss of any means of support.

Yet despite these pressures I don't see any sign of pressure to advance research on understanding autism in the workplace.

All that happens is various protests about the unfairness of the review system. I suspect that's not going to get us anywhere.

Of one thing I am certain, the social model of disability is inadequate for autism. That might improve if we better understand the barriers and how to remove or allevate them. But I think it also means accepting that people will have to make an effort themselves to conform with the work place (medical model). What we need to know and better understand is the nature of these personal adjustments.

I would agree that the TUC haven't gone far enough in identifying the real barriers to employment, nor have they demonstrated an awareness of the needs of autistic people or indeed awareness of what autism is. I wouldn't go so far as to say they are siding with the government. They did have a huge opportunity and they've passed it ip in favour of something non-contentious that will keep NT employers happy.

I read the study of people supported in employment. A great result for all of them but although comments from their employers and family were published in the study, no one asked the autistic people themselves what they thought. Nothing about us without us? Not by a long chalk.

I've found this thread really inspiring and thank you for your work on it. But I have to say I may not be on this forum much longer. My ideas on autism as just another way to be human and my refusal to be seen as in need of treatment or defective in any way may fit in better at www.wrongplanet.net.

There is another side to this.

The Coalition Government and the DWP/ATOS is presenting a picture that implies people with autism aren't trying hard enough to get work.

Hence people on the spectrum are having a tough time with PIP and other benefits reassessments.

In the midst of that process up pops the TUC (Trades Union Congress - federation of trade unions) with a document which suggests that all that is needed are a few anticipatory workplace adjustments.

The TUC Guide trivialises autism, makes the issues look very non-specific, and very much gives the impression that there is nothing to finding secure employment with autism. Its all in our heads, I guess?

It is a pity that the TUC doesn't read what is said on this site. Besides my current spiel, there is lots of evidence on here of real difficulty.

Before the TUC published its Guide to Autism in the Workplace in May 2014, they were just indifferent to people with autism.

Now the TUC is backing the Government of the day in suggesting people with autism are faking their workplace difficulties.

I hope that the TUC is held morally accountable for this. I doubt they themselves would see it that way, but I guess, like everything else, the function of the TUC has changed a great deal.

As indicated above, I could suggest my own barriers:

Fitting in: I reckon one of the major issues is being accepted into the social structure in the workplace. The problem is, if you are not good at reading social situations, and not good at conveying the right social messages, you will have had a long term difficulty in developing the right social skills for the workplace. The way to remove this barrier might be not requiring the autistic worker to socialise. It wouldn't remove the problem entirely.

Trust: related to the above, if you misread others and give misleading signals, work colleagues will be unsure what you mean in situations, whether you are being "straight" with them or devious/misleading, and therefore whether they can trust you. Correspondingly the worker with autism may have trouble trusting colleagues, and may be confused by their suspicious reactions. This barrier might be eased by training of fellow workers in the communication difficulties experienced by people with autism, so they are more understanding. Perhaps other ways of settling differences of trust could be found.

Team working: for the above reasons it can be difficult being part of a team, but nowadays it is hard to avoid teamworking. This barrier might be alleviated if someione in the team acts as a mentor for the team member with autism.

Workplace humour: again people on the spectrum may be less well equipped to distinguish play from reality.  The solution would be to ask colleagues to take account of that difficulty.

Management behaviour. It may be difficult for someone on the spectrum to adequately process management impatience with the workforce. Again a mentor would help the person with autism adjust to this.

Communication of tasks and task details. Devices that help prompt people on the spectrum through tasks are gradually becoming available, but a mentor could help, and in the meantime prompts could be set out in written form in a booklet the autistic person could use for reference. 

Noisy environments, visually disturbing and other senses affected. The TUC suggestion was quieter workplaces and turning down bright lights, which isn't always possible. It would easier to provide the autistic person with concessions like wearing noise-reducing headphones, wearing protective or irlen glasses, being allowed a shorter exposure time.

Change in the workplace. This will affect people on the spectrum but can be alleviated by providing additional explanatory material in writing, and by a mentor, to help the autistic person re-adjust.

I could extend this, but I'd rather ask others to come up with more suggestions. We need to get a fuller picture.

My concern about the TUC guide to autism in the workplace is that they don't define the barriers (and probably don't know what these are). So their suggestions for anticipatory measures don't address real barriers.

However I don't think enough is known generally about these barriers. I can suggest possibles from my limited perspective, but what is needed is a study of workplace barriers across a range of occupations, for people on the spectrum.

If the Government/DWP genuinely wants to help people with autism into work, funding such research ought to be a priority. It might also drive further development of digital aids.

OK, we are likely to find that the barriers are not easily addressed by the social model, but even where people on the spectrum have to meet half way by making their own adjustments (medical model), we need guidelines. 

All the TUC did was describe the Triad of Impairments (rather naively in four pages) then suggest some things they thought might be problems in the work place, and offered some anticipatory measures such as relaxation places as their interpretation of quiet rooms.

But if the TUC won't do it, surely some other organisation could do the job properly.

What is needed is to look at a range of jobs. Sometimes this will involve people at the "milder" end contributing (the unthinkable - including able aspies!). We need to build up an understanding of what the barriers are, before we decide to what extent they can be removed or alleviated thriough the social model, and to what extent individuals on the spectrum have to work out ways to bridge the resulting gaps.

The TUC's barriers. I've given below the barriers the TUC identified (missing out the examples, which rather missed the point in any case). It reads like one of those flip chart lists from a discussion forum.

Maybe others can suggest things they should have included, or placed higher up the list, or grouped into netter sub-headings.

"Discrimination: treating the autistic worker differently from, less favourably than, others

"Bullying by management, including ridicule and physical/verbal abuse

"Lack of communication and support

"Preventing an autistic worker from carrying out duties or using equipment when there is no valid reason for doing so

"Rates of Pay: an employer might pay a worker less than the rate for the job, using the autism as a pretext or excuse

"Exploitation: an employer may think that s/he can 'get away with' treating an autistic employee badly

"New work processes: the imposition of new arrangements at work may cause difficulties for workers on the autistic spectrum

"Past experiences: working conditions in the past may have caused difficulties for the worker; perhaps when the law was different

"Unemployment: autistic workers are more likely to have periods of unemployment, often due to losing or leaving a job because conditions are unsuitable

"Self confidence may be decreased by experiences of discrimination or bullying

"Performance management regimes may cause undue pressure and stress to autuistic workers

"Working environment: Autistic workers may need a 'benign' environment with fewer distressing factors

"Managers being overly 'bossy' can distress autistic (and other) workers

"Disruption of routines

"A worker with undiagnosed autism may not get support or adjustments

"Contracting-out enables third-party companies to insist that workers are removed, even sacked, just because they don't like the worker concerned

"Expecting people to abide by 'social rules' at work without ever specifying what they are

"Problems with assessment and/or promotion processes

"Making judgements about a worker's social interactions based on neurotypical standards, e.g. not hiring someone because s/he did not make eye contact during an interview, assuming s/he was disinterested or dishonest

"stress or anxiety

"Colleagues or managers misunderstanding you

"Feeling 'left out' socially

"Conflict with colleagues or managers

"Misunderstanding rules, policies or instructions

"Difficulties organising your work

"Feeling that autistic positives/skilkls are not recognised

"Frustration with others' poor organisation of work

"Timekeeping (either yours or others')

"Unexpected events or disruption of work schedule

"Irregular working hours

"Sickness/absence policies

"Dealing with diagniosis as an adult

"Sensory issues, eg light, noise and smell"

Thanks, I will check those out.

I've never tried posting links, you can make shorter urls from the long ones by going to http://tinyurl.com/  They might get past the technology that way.

It centres on a paper in Journal of Vocational Rehabilitation Vol 37 (2) page 75-85 for 2012, by Gentry,T et al "The Apple iPod Touch as a vocational support aid for adults with autism: three case studies".

The links I'd spent ages on, as I had to enter them by hand, wouldn't paste across, are proving hard to find again. One was in New Scientist, others in other web publications talking about the benefits.

Mollom hasn't come back to me re clicking that I'd been blocked. Until NAS sorts out how we are suppposed to read these things I'm not trying again.

If you can manage to add the links that would be really helpful. At present I'm involved in a project which will be buying iPads for use by local autistic people and providing training  for library staff in how to assist with their use. This would be another great use for them.

Many thanks for this, it is reassuring to hear from someone who has previously looked at the TUC report and its effectiveness.

I will look into how to approach various unions. I have made a direct, but brief approach to TUC, but don't think I'll get anywhere. They are bound to be protective.

You are right, social adjustment is the weaker link, they can manage physical.

I tried to make a fuller reply to this but Mollom blocked me. I wish I could tell for sure whether some of the letters are lower or upper case, as it is often unclear. I think I read an S as lower case rather than upper case, even though it was smaller than the other capitals, and frankly I do wonder how anyone is supposed to make sense of these silly devices.

In my previous attempt I had included links to American reports about hand held devices produced by Apple Ipod Touch in 2012 which have helped people in America with autism in the workplace. One helped someone manage a fast food retaurant by providing prompts for next task. In another case someone was helped using public transport.

The interesting thing is this received worldwide publicity in 2012 and 2013, except - of course - you've guess it - the UK.

I may try again to provide the links when NAS sorts out Mollom.

I can see that the social model is more suited to dealing with adjusting the physical world for those with physical disabilities. It doesn't work when you're asking individuals to change their behaviour to remove barriers. In fact its not really a social model at all, its a physical model because it breaks down when trying to modify social interactions.

I read the TUC document last year and at the time I welcomed it. I can see now that this was because it was a great deal better than the bilge my employers write about autism. They expect service users to be autistic but not their staff and talk in terms of impairments and deficits. The document paints a rosy and hopeful picture but is not of much use to us.

The TUC are aiming to get people into work and they are keen to feed employers the line that improving things for autistic people improves them for the whole workforce and hence we are not really any trouble at all to employ.

My experience is that with physical changes people are very willing to entertain the idea of making an environment better for autistic people until they see what is actually needed and then they decide its impossible. No one even considers the social adjustments that might be required.

I too think it unlikely that the TUC will read this but we can take the fight to them by contacting unions that we are, or have been, members of and asking them where they stand on this.

I think you are right, it is about interpretation. The problem is that the prioritised interpretation lies with the able community.

If I could quote Christine Breakey in "The Autism Spectrum and Further Education - A Guide to Good Practice" (JKP 2006) page 26:

"Viewing autism through the social model challenges the dominant view of autism. It shifts the focus from the indivuidual and locates the 'problem' within society and its organizations. According to this model, autistic people are no longer viewed as 'problematic' or 'challenging' but as experiencing problems or difficulties which are caused and challenged by society's lack of provision and the creation of barriers within society. This model challenges the prejudice and discrimination which autistic people experience on a daily basis and leads to a fundamental need to shift our professional focus and approach from one which seeks to normalize and teach the autistic person to 'pretend to be normal', to one which examines and addresses the barriers in the organizations in which we work, so that they become more accessible and inclusive for autistic people".

First as you'll see the 'individual' is confined within the medical model - far from there being any sense of the disabled person having human rights and a right to full participation, this is about society changing to remove perceived barriers.

I don't see any sign of the barriers being removed for people with autism, whether in the workplace of education. We are still being treated under the medical model. Part of the problem, as I've said earlier, is that no-one understands autism enough to define the barriers that need removing, or provide aids or prosthetics. Society isn't making any allowances for us, nor attempting to remove barriers. It expects us to change.

The worrying other side to this is the way able people restrict what that societal adjustment means. It infuriated me so often in education to find that an able person could get an extension for an assignment for any reasonable excuse, but it was argued that a disabled person couldn't have an extension because provisions had been made elsewhere, and it would be giving disabled people an unfair advantage to give them more help.

I'm not a fan of Breakey's book, but I hold onto it because it is so widely used by educational professionals. This is what she has to say about this -  page 27.

"Our behaviour is something we all have to manage, monitor, and control, all of the time. It is affected by outside conditions, but ultimately, we are expected to take full responsibility for our own actions. Because of this, it is argued that it is not always possible to effectively remove all social barriers which affect all autistic people, particularly because of the unique and individual nature of the condition. When this is argued, then the onus is once again put onto the autistic person to 'fit-in' and conform, to some degree. This means 'act normal'. Conformity is always an extremely controversial area which is accompanied by massive ethical dilemmas... but it is something which we are all expected to do, in every situation we experience, without being aware of it. Autistic 'normality' however is quite different to neuro-typical 'normality' and what we are actually asking the autistic person to do is to conform to neuro-typical 'normality'. Clearly, this is a situation which cannot be resolved easily and there is a need for greater understanding and flexibility"

The upshot of this is the social model makes some adjustments - so-called 'reasonable adjustments', but no more than that. It stops theoretically when sufficient barriers have been removed for the disabled person to have a fair chance on a 'level playing field'. But autism is too complex and difficult, so the social model cannot be applied to autism.

Nor is there much sign of society striving "for greater understanding and flexibility" with regard to the needs of people with autism, in spite of the Autism Act, Leading Rewarding and Fulfilling Lives and other so-called progress.

Which is why I'm so ballistically angry with the TUC. If they had researched this properly they would have realised the social model doesn't work for people on the autistic spectrum. Its just what you'd expect from a politically driven organisation whose priority isn't helping the disabled but challenging employers. The TUC doesn't care a jot about people with autism.

It is a pity the TUC will probably not read this diatribe.

The social model of disability looks at the person with a disability as a human being, a person with human rights who has a right to full participation in all walks of life. Isn't it the interpretation of this that is at fault rather than the model itself, the belief that, sometimes half-baked, reasonable adjustments can create a level playing field for us all?

Longman, this is brilliant stuff. I need to read it all through again and digest it before commenting but I'm finding it insightful and helpful.

The TUC document relies on the Social Model. I do so detest the social model.

The social model versus the medical model is a nice idea in theory. The medical approach to disability puts the blame on the disabled individual. They have to approach some sort of cure, or acquire compensations, in order to participate in the able world.

The social model transfers this responsibility to society. Society has created barriers for some people perceived as impaired, and all society has to do is remove these barriers, and disability disappears. The barriers include prejudice and discrimination (resolved by training and education), physical access (disabled ramps), environmental changes (appropriate lighting) etc.

But there's another side to the social model. It is supposed to involve adjustments sufficient to overcome impairment. The disabled person must not have an unfair advantage. They cannot expect to exploit the system or ask people to go to unreasonable lengths (hence I think this conditions many peoples' reactions to autistic behaviours).

The principle is a ramp here, someone to help you get started, a piece of computing software to overcome any difficulties, a prosthetic (artificial foot or arm) and so on. But there mustn't be any unfair advantages that give disabled people an edge over able people, so once the barriers are alleviated, no more special allowances are to be made.

This doesn't work for autism. For a start autism has always been treated using the medical model - CBT, medication, many hours spent on Thinking in Pictures, or learning how to engage with NTs, or learning how to control and restrict behaviours. The notion that this can then be handled in the workplace by "we've removed the barriers, now it is up to you" - is truly ludicrous and unfair.

Secondly we still don't properly understand what these barriers are. They are complex and vary greatly between individuals. Without that understanding no-one has yet come up with a prosthetic or a box of tricks that removes the barriers.

Thirdly, to a large extent, people with autism get on with their lives (if we ignore the fact that many need to be financially supported, provided with accommodation etc.). The barriers are that able people perceive people on the autistic spectrum as significantly different. They don't understand this difference. Indeed they may be very prejudiced towards autism related behaviours and intolerant, and unwilling to make allowances.

In the face of that, how do you remove social barriers? They are all still there - prejudice, different ways of doing things that autistic people cannot fit into, and where neurotypical people are not willing to consider dramatic changes to their way of life to accommodate it.

Autism is still hung up on the medical model. It is truly ludicrous and blinkered for the TUC to come up with the social model, propose a few anticipatory adustments, like relaxation space for quiet room, and think that's their obligations over.

It is time the Social Model of Disability was thrown out. It is archaic. It clearly cannot work for autism, but I submit it doesn't really work well for any other disability. A few wheelchair ramps do not magically transform the lives of people in wheelchairs. Its a lazy way for society to claim "we've made a gesture, now stay out of sight"

Autism sadly still needs the medical model. In order to fit into the real world people with autism are expected to try to adapt to the "real world", change their ways, learn "normal" ways of doing things, effect a cure. That's hardly the social model.

We need to apply our thinking to making the medical model easier to adapt to and live around. The social model has no place in treating autism.

I had real trouble uploading this last night which is why I ended up with two versions of the same thing, so I've tried to change the repeat to something new.

I wanted to pick up on certain important issues of understanding: the TUC's "relaxation room", DWP's theoretical and abstract thinking, and Hendricks' palm top devices.

The TUC seem to have tanslated the need for a quiet room, via the social model of anticipating needs for all, into a "relaxation room" for all the workforce. That sounds to the TUC like a good idea, something new to insist on, off the back of the autism bandwaggon.

But relaxation for NTs probably means piped music, conversation, a drinks machine etc etc. Imagine going to the relaxation room to recover from a meltdown or near meltdown, to be suddenly surrounded by NTs putting their arms round you and staring into your face and cooing "what's up darling?" and "I'm sure a little cuddle will get you back on your feet". Or a less sympathetic "if you want to sulk go and sit in the toilets, this is meant to be a relaxation room, and we cannot relax with you snivelling in the corner". The TUC hasn't bothered to understand what a quiet room is for. Its just, wow, we can use this to demand relaxation rooms in all workplaces.

I didn't need to go far to find out where DWP got the difficulty with hypothetical and abstract thinking. Its on the NAS website under "What are the main characteristics of someone with autism" - "Social imagination" - "The person with autism may feel more comfortable with facts than imagining hypothetical (what if?) or thinking in abstract or conceptual ways".

How this becomes a definitive "avoiding language that is hypothetical or abstract" is beyond me, but remember next time you go for a PIP assessment, if they ask you hypothetical questions and you answer them well, they'll write down "this person hasn't got autism".

The idea of a palm top device (or a written hard copy notebook) containing a detailed job specification seems to me a brilliant idea. Work Study, artificial intelligence and robotics research has explored every aspect of breaking down a task into its components and incorporating qualifications. It should be easy to provide a worker with autuism with such a tool, and edit it when there are changes.

It is not that the person with autism needs a step by step guide to the job, but rather that it would be useful as a reference tool when stressed or confused. NTs learn into a job mainly through social interchange. They come to associate chatty Mr Smith the supervisor with what he is particular about, what he expects and what he will make a fuss about and distinguish it from his humour and jokes. A person with autism cannot do that and hasn't got that learning mechanism. So providing a portable reference manual helps a person with autism to compensate.

The technology to do this is around. It just needs investment and a committment to provide it.

It is 2015. We've been at autism in the workplace for a decade, and we aren't going anywhere productive otherwise.

So what's the big deal about giving good advice on how to improve workplace conditions for people on the autistic spectrum. Certainly NAS, the TUC and the DWP seem unable to make any progress. But people are coming up with answers in America. What are they doing that we are not doing?

This is important given I've just chewed up a document produced by the TUC on autism in the workplace. I'm not a spoiler or a knocker: I want to be constructive. But nobody out there seems to be trying hard enough.One source that really ought to be able to make progress in this are the unions. So why does the TUC only manage to come up with inadequately researched platitudes? The answer I'm afraid is there is no UK body of knowledge on this.

I've looked at a paper published in America - This is by Dawn Hendricks (2010) "Employment and adults with autism spectrum disorders: Challenges and Strategies for success". (Journal of Vocational Rehabilitation Vol 32 (2010) p125-134. The research at Virginia Commonwealth University in Richmond, Virginia, based on both a wide literature review and data gathering comes up with suggestions for the workplace. The literature review includes a lot of UK-based insight, so why cannot we come up with practical suggestions?

This includes job placement (careful examination of the job specification) and adaptation of the job spec. A supportive environment including job coaches who stick with the individual for a good length of time gradually fading out. On the job training to help the individual acquire and adapt skills to do the job.

For example a palm top computer could be provided which goes through the steps of various job tasks both visually and verbally, which the individual can consult until comfortable and refer back to when needed.

Provide a consistent schedule for completion of work tasks....something the individual can refer to to keep on track. Simple organisers with worksheets, checklists, and timescales. Ideas for managing down time effectively. The technology for this is around. It just needs work study directed at the needs of those on the autistic spectrum.

Similarly providing behaviour management strategies in an accessible format that the individual can refer to to remind him/herself of options for dealing with stressful or uncomfortable situations.

Workers with autism may need extended support structures for when something goes wrong, new stresses arise, in a changing environment to which they have adapted. Those supports could be similar instructions in a palm top device they can consult discretely.These guidelines could include strategies for relating to different types of manager and superviser and different management styles - this sort of knowledge is around, it just needs appropriate packaging.

The technology to do this is around. It just needs investment a committment to provide it.

Something the TUC seems to be sadly lacking, but equally NAS and DWP don't seem to be doing any better.

It is not that the TUC is alone in not having the foggiest about what employing people on the autistic spectrum is about. This is the DWP's current state of play in the June 2014 update of "Employing Disabled People and people with health conditions":-

"Autistic spectrum conditions (ASCs)

In the UK, half a million adults are thought to have an ASC. They may have difficulties with:

- communication

- understanding the feelings of others

- meeting new people

People with an ASC may also have high levels of accuracy, attention to detail, and a good memory for figures.

Adjustments for an employee with an ASD include:

- maintaining a structured working environment and routine

- avoiding language which is hypothetical or abstract

- avoiding making statements which could be taken literally

For more information and support visit the National Autistic Society"

OK this might look vaguely familiar, but stop and think how it informs DWP staff of your needs.  If you are being reviewed for PIP or other benefits, what does this tell you they don't know about autism?

Do you really just have a problem "meeting new people"? Do you actually have a communication disability - ability to hear and speak? Next time you go to a DWP interview, is it obvious you have a communication difficulty? Because that's explicity what they are looking for - and likely as not, failing to detect. Or are you just missing part of the conveyed meanings, and not conveying them correctly?

Is routine and a structured working environment all you need?  What is your understanding of hypothetical and abstract? And how does anyone avoid making statements that could be taken literally?

But much more importantly what difficultuies do you have that are not mentioned here? Because likely as not DWP have no idea about them.

And who, I wonder, do we blame for this level of misunderstanding?  Where is DWP getting this stuff?