New Employer - best way to disclose ASD diagnosis

Hi Recombinantsocks,

That sounds a fair paraphrase.

Of course it is just my theory. I'm not in a position to investigate it, and certainly not in a position to influence the professionals or convince NAS to modify its use of the triad in training packs. And who reads this forum anyway? Not I suspect the people who make decisions.

I did cite 29th November under "An Idea" the research at Warwick University that found that differences in autistic brains included facial expression recognition and spatial awareness relative to environment. I think it will depend on developments that identify what are the primary difficulties, and what might be secondary, arising from our attempts to compensate and cope with those primary factors.

I suspect that, because we don't pick up on or properly use non-verbal communication (facial expression and gestures), and rely heavily on the spoken word, that makes us less effective at social communication. That makes it harder for us to adapt socially, having little social referencing.

It is possible that the Triad, in looking for identifiers, is dealing mostly with secondary manifestations. And it doesn't include traits which can be confused with other conditions. Which is why sensory gets left out, especially hearing and seeing, because that could indicate schizophrenia. Cue the boy asked if he could hear voices, who replied yes. Yes he wasn't deaf. Not that he heard imaginary voices.

If you look at Gillberg's criteria (Attwood's Complete Guide p37), category 5 is non-verbal communications problems - at least one of limited use of gestures, clumsy/gauche body language, limited facial expression, inappropriate facial expression, peculiar stiff gaze. Most of that could be the result of poor understanding of facial expression.

Particularly if, as children, we are told off a lot for having the wrong facial expression, such as appearing not to take things seriously, or to be smirking when we should look sorry, a natural response might be the line of least resistance - a limited or stiff facial expression.

Going back up Gillberg's list4 is speech and language peculiarities - delayed speech development, superficially perfect expressive language, formal pedantic language, odd prosody/peculiar voice characteristics, impairment of comprehension including misinterpretations of literal/implied meanings.

If you cannot use non-verbal properly, you must rely on the spoken word - that might delay speech development because social referencing, through which speech might develop, could be impaired. Dependence on the spoken word could result in overly perfect language, and being told off for expressing things inappropriately could lead to pedantic language or odd prosody. And not being able to read facial expression might make it hard to pick up on double meanings or metaphors.

Gillberg 3 is the compulsive need for introducing routines and interests - well if you cannot socialise properly, you lack the ability to follow cultural influences, and develop those of your own. And without the shared experience, routines become a safe refuge in a hostile social environment.

Gillberg 2 refers to narrow interest - exclusion of other activities, repetitive adherence, more rote than meaning. But if you don't have effective social referencing, you are likely to resort to isolated comforting activities.

Gillberg 1 is social impairment (extreme egocentricity)  - difficulties interacting with peers, indifference to peer contacts, difficulties interpreting social cues, socially and emotionally inappropriate behaviour. But if you have poor social referencing, and retreat into your own world because the big world present difficulties, surely this is what follows.

Gillberg sees the social impairment as an outcome but perhaps for the wrong reasons. If you are relying on verbal because you cannot understand non-verbal, that's why you end up with social impairment.

Likewise the triad considers consequences to be causal.

There needs to be a rethink on autism. Unfortunately I cannot see that initiative coming from NAS. Nor from health professionals. So we are stuck.

Hi Longman,

I've thinking about what you have said and will try to paraphrase it to see if I have the right end of the stick.

At the root of our situation is the triad of problems that result in diagnosis. Along side that, we have issues such as light and sound sensitivity etc. As a consequence of the triad and also maybe a consequence of the comorbid issues, we develop a range of idiosyncracies and behaviours, some benign and some malign. I think you are suggesting that the things that the world has to cope with when dealing with us are dominated by the secondary issues rather than the triad communication problems.

Therefore, telling people about the triad doesn't really help very much as the actual day to day issues of managing someone with ASD result from their other more obvious behaviours.

It is a matter for each individual.

AspieJimmy was asking about disclosure to an emplyer so the employer understands his difficulties from the start.

The trouble is what are these difficulties? Even after several successive jobs it may be quite hard to set down a clear perspective, not least because what you perceive went wrong may not have been the main issues for employers.

We probably perceive communication as uppermost because it is often how it most affects us. But one problem of autism is being unaware of how it affects others.

My advice would be to look through the Triad and adapt it, rather than just hand it to the employer. Because an employer may take it too literally and give advice to work colleagues that is rather stilted and likely to create more problems than it solves.

However the Triad is mainly about communication. I do not feel that reaches the heart of the matter. Hence I outlined for areas I think are important - there could be others - fitting in, spikey profile, sensory and organisational issues.

Also the Triad was devised as a diagnostic tool. I really find it incomprehensible that it is so liberally used as a blueprint of everyday life on the spectrum. I do feel very strongly that just handing employers the Triad is misleading.

Recombinantsocks you are only viewing it from your own perspective, and others could have entirely different situations. Also just patching things up isn't getting to the root of the employment problem.

I a merely asking that there is proper research.

There are no guarantees but for the moment the reasonable adjustments together with the discussions I have with my manager, where I attempt to explain my problems, are helping to keep me in work and helping me keep my sanity. Small things can have a significant impact. I have had too many jobs over the years and have resorted to lawyers and an employment tribunal in attempts to keep from being pushed under by my difficulties. Reasonable adjustments are a necessity but not sufficent to move away from 15% employment towards 100%. We should not discard something because it is insufficient on its own because it can be part of a bigger solution.

The other question in my mind is that if you set the triad aside then how do you begin to succinctly and coherently convey the top issues to an employer? If you don't like it then is there a better alternative?

Little social model adjustments make it more congenial for you, but will it guarantee continuous employment?

For anyone with more marked difficulties the reality is few job chances and frequently losing jobs or having to give up jobs.

I do reiterate, even if you don't understand what I'm trying so say - that we do need to better understand the barriers to employment faced by people on the spectrum. Otherwise we stay at only 15% with long term prospects.

Or we wait until a more compasssionate government allows many to rely on benefits. This Government is in for another four years and intends to force people with autism to try to work.

Do we address the issues or "rollover" and let everyone suffer?

I agree with CC that HR should be the place to start. My experience of HR has, however been varied with some people in HR being excellent practitioners who do the job because that is their vocation. Others are doing the job because they are unable to do anything else. Some HR departments are just clerical groups that keep records and make sure that people get paid. I would advise caution and not to expect to find any best practice.

I am interested to explore Longman's thoughts on the triad. Every mention of it brings objections that I don't really understand.

The original poster states "I unfortunately got fired from my last job due to some communication difficulties". This lines up with the communication issues in the triad. My experience in my previous job was that I did not understand what was being communicated to me and people did not understand what I was communicating to them. I was unable to sense the emotions (anger, impatience, personal likes and dislikes etc) in my colleagues and managers. It degenrated into shouting and throwing of objects in the office!

I mentioned Reasonable Adjustments because some allowance can help one survive in a role. I am allowed to use noise cancelling headphones, my manager understands that it can help if he writes things down for me. More flexibility is tolerated if I want to take 5 minutes out in the quiet if I am willing to put time in at other times to make up. None of these resolve my difficulties entirely but they do help. Anything that reduces the tension and friction is welcome but it won't ever fix my problems. They can make the job more bearable and it can allow me to get on with my work and be productive rather than be continually distracted and irritated by the environment. The social model doesn't fix me but it can make the environment more congenial for me.

A step beyond Reasonable Adjustments comes with specific training of both sides in schemes like Access to Work. Training and education of both sides can help each side to understand what planet the other person is on. As a person with ASD it is like being on a different planet. That means that I am on a different planet but so is my manager on a different planet compared to me! We both need to understand that the other has a different perspective and understanding of how to work together. We won't ever change our inner traits and become a native of the other planet but we can at least understand why we are different.

Hi AspieJimmy. Rather than waffle on, I'll keep it simple. It sounds to me as if you already think you will get more benefit from telling them, and I agree. Best place to start is with HR. They will understand the confidentiality issues, and will only want, with your permission, to tell those people who NEED to know - who else you tell is absolutely your choice, you are in control of your confidential information.

If, as they should, they understand that different things will affect you in different ways, that this can change from day to day, and that you need to have someone, such as your manager, who understands this, you leave them to listen when you tell them how best to support you, according to your shifting needs. After all, it won't be every day that you need anything at all, you simply need to know that when you ask for help, you'll be able to. I think the most important thing is just being able to tell someone 'today is a bad day...' and get a positive response.

Good luck with whatever you decide.

I do feel the Triad is more of a barrier than a help. Employers are not directly affected by the Triad but by any factors that make it difficult to employ someone on the spectrum. It is what they need, not what you've got.

Some things in the triad may be more problemmatic for them than others, but the big issue is often with things the Triad doesn't address.

My perception (and its just my perspective and not necessarily anyone else's) is that most problems lie with "fitting in", with what is often termed "spikey profile", sensory and organisational issues.

We all seem to be working to the Social Model - that is to say an employer should expect to make reasonable adjustments, which boil down to wheelchair ramps, stable lighting, orthopaedic chairs etc.  The Social Model doesn't seem able to address autism.

 You cannot give someone on the autistic spectrum a tool that makes things alright. There have been discussions about hand-held device for organisational prompting, but that only sorts a quarter of the problems, if that.

Fitting in is paramount. Human collective working environments are inherently social and depend on conformity and "synchromeshed" interaction. People can tolerate difference if they can put boundaries around it. People on the autistic spectrum cannot be defined that way. They "get up people's noses" often for very trivial reasons, and probably more to do with neurotypical oversensitivity than any actual work difficulty.

Spikey profile is a real problem. I had many difficulties because there are some things I am exceptionally good at and other things I'm grievously bad at. They aren't easy to separate, often involving complimentary needs. Having special interests really isn't adequate to define this because it is what people on the spectrum cannot do that has most impact.

Sensory issues are also very significant in the workplace and difficult to compensate. Open plan offices or environments with lots of machinery noises are particularly difficult, and it may not be all that practical to separate the autistic person from the workface or the lighting etc.

The triad sounds good because it is after all what the AQ and other tests are based upon. But is this really a definition of reasonable adjustments. In practice it isn't, and you can only really assess this by taking each of the triad parameters, looking around your workspace, and having a serious think about whether it makes that many odds or has any impact.

Because your employer will try to take all these points literally, and tell people working with you to be cautious about use of humour and explain things clearly (rather than loudly and slowly as if you are deaf).

There are reason why so many people on the spectrum cannot hold down employment. We seriously need to tackle this, especially in the current recessional climate and with a government that doesn't take our difficulties seriously.

Some people seem to be happy wafting the triad under employers' noses and saying that's my job done, let the autistic workers get on with it.

My personal view is we need to understand the barriers a whole lot better.

Hi Jimmy,

This is tricky, as Longman says, it depends on so many things - we are all different and actually employers are all different too. It is difficult and dangerous to generalise.

I have gone through a similar loop recently, clattered out of one job because of communication difficulties and gone into a new job in a state of stress left over from the previous job. The new job was also different to the old job so there was an awful lot to take on board and it hasn't been an easy ride.

The new employer made me do a health form when I started and it was at this point, not before, that I disclosed the ASD. The manager has knwon from day 1 what he has on his hands although he didn't really have any idea about how to handle it. The protection of having a label that qualifies under the equality act has given me some protection - I think I might have been sent packing without that. I am now settling in (6 months after starting) and working out how to make a good contribution.

I very much agree that disclosure up front is a good idea. Perhaps you should go to HR to make it official and to get them to provide the legal advice that they can give to your manager. Of course it depends how big the firm is, not all firms have an HR department. HR departments are otherwise to be treated very carefully as they often try to stick with the management rather than the workers' side in an argument.

There is a government scheme called Access To Work that can actually come and provide you and your employer with assistance in trying to keep you in work. They bring in specialists to provide you and your manager with advice on how to make things more managable on both sides. I would strongly recommend that you investigate this. I got some way down this when I was in the previous job but it was too late. I may use it in the current job or a future job - I have to see how things go.

You are entitled to Reasonable Adjustments (see the Equality Act) for your autism. In addition to the ATW scheme, employers usually have occupational health specialists that they can call on. It may be a good idea to get these involved to get a workplace assessment done. This would involve asking you about your issues and working with you and your manager to decide what adjustments can be made. They wouldusually get an external consultant in to do this.

Longman mentions the Triad of problems. Autism is a very comlex thing and we typically have lots more issues than the triad suggests. It is also fair to say that if you have a diagnosis, as you have, then you will be affected by the triad issues and that this can be a starting point for teaching someone about the issues that you have. You have to introduce people to this with the most important things first and the triad is probably a good starting point for most people. Some people with ASD will also have sensitiviy to light or sound or other issues such as problems with talking or ADD etc and that might need dealing with straight away.

This is a tricky one which needs to be thought out in the context you are in. There have been quite a few threads that have discussed this, so worth searching back a bit through previous posts.

My concern is what employers expect. The information available to them is still acting a bit like a deterrant, while I'm sure the intention is to help. NAS has information for employers under the heading "Working with people with autism" - subsection on "employment". It first introduces the Prospects Service for analysing the workplace environment and training staff.

This might work for someone taking on a placement or people having marked difficulties, but I wonder whether, with people who have work experience, this makes things look harder than it needs to be. There are also guides for employers on autism, Recruitment and Managing Employees with Autism. It is a good idea to read through these and consider whether this foreknowledge is likely to be helpful.

At the same time there is a need for something you can show an employer that gives good clear advice that won't "spook" the boss, but will help him help an employee on the spectrum. There are useful bits of these leaflets, but also things I worry about. One is the use of the Triad of Impairments to explain the working characteristics of someone with autism - social communication, social interaction and social imagination. The Triad is a diagnostic tool that distinguishes ASD from other conditions like schizophrenia. Consequently it leaves out ever so much crucial information

It might be worth doing your own abstraction and simplification of what might be useful for your employer to know.