Employment issues

The question is, IntenseWorld, how do we get from where we are to where you suggest we should be?

There are, at least I keep hearing it claimed, people on the spectrum in high flying positions - engineers, lecturers, lawyers, doctors.

But key positions in companies are primarily managerial, where you get to the top by means of interpersonal skills, team leadership, deputisation, boardroom competitiveness - all things that people on the spectrum are not good at.

Moreover the climate doesn't favour disclosure as a way to the top. If the are people on the spectrum out there in senior positions they are keeping quiet about their autism status - still too much stigma.

What are "reasonable adjustments"? I've spent years trying to resolve these issues in a university context. It isn't easy, and increasingly (in the absence of law suits) institutions are diluting the reasonable adjustments they make.

A reasonable adjustment for people on the spectrum is to be relieved of having to fit in to a social framework in the workplace - most of these social frameworks aren't necessary to do the job. But the trend is towards teamwork, open plan offices, frequent role changes to broaden experience, and a lot of competition and aggression.

Also what is it employers think they are getting from taking on people on the spectrum. I know there are companies that take on AS people in software development, but is that long term with good career prospects, or merely exploitation, not dissimilar from agency work.

No one is actually out there demonstrating the benefits of taking someone on with AS. And successful people out there aren't making the fact they are on the spectrum known. And most of the 15% or whatever in employment are probably for the most part at the abler end.

But at the moment there is no research on the experiences and difficulties those 15% face. At the present time many of the people able to work aren't getting social services support and aren't being classed as disabled. They aren't being counted, let alone consulted.

To move forward NAS has to take positive steps.

I doubt those sorts of bods read posts in online forums...more's the pity!

Employers need to also be prepared to comply with the law regarding reasonable adjustments.  What would help is having at least one autistic person in a key position certainly in every large organisation anyway.  Interviews need to bear in mind what is needed for someone on the spectrum.  Even before that stage, I think they should be prepared to look at the facts (checked out of course!) on someone's CV and even if it reads boringly because they are an honest Aspie/autie and don't know how to sell themselves their qualifications and experience should be enough.  Everyone knows people lie on their CVs, I don't and like to think people with ASCs generally don't as we are usually honest.  So an adult with ASC is likely to have a real CV not some wish-list full of hyperbole.

All employers need to know what reasonable adjustments are, and why they are necessary, and to understand the very valuable input people with ASCs can have for their companies.

I think until those sorts of thing are addressed, getting people back to work isn't really going to work as people will just have problem after problem, go off with stress leave, get sacked, get made redundant or live in a hellish job with workplace bullying.

People like me get used by temp agencies, to put good skills to work for paltry pay.  A job I once temped in, I used to process the company's invoices and I saw the invoice for my services from the agency that employed me.  I was horrified to see that the agency only gave me 50% of what they charged the company for me!  But when your confidence is knocked in secure employment, temping can seem like an attractive option.  I didn't even used to get holiday pay or sick pay at one time and would drag myself in when I was really unwell as I couldn't afford to be off sick.

Is it any surprise people with ASC aren't often in secure long-term employment and end up claiming benefits.  Until the government sort out employers and police our rights we will be more of a drain than we need to be.

There's also a "chicken and egg" (which comes first) situation here.

We are often quoted figures like 85% of people on the spectrum do not find long term secure emplyment (or whatever).

The statistic is widely used to draw attention to the difficulties faced by people on the spectrum. But - what efforts are being made to get more people into employment?

Is increasing the numbers in employment likely to undermine the headline hitting statistic?

Or should getting more people on the spectrum into employment be a priority?

I replied back via my MP 13th September, asking him to refer my concerns back to the Minister, but as yet have had nothing back. In it I reiterated that my concerns were about the experiences and barriers facing people on the spectrum in work. I took the bold step of explaining my own circumstances, having had a career and now retired, but how the AS affected me, and what difficulties I encountered, and extrapolating that across to others. Was it worth the effort of writing back, I wonder....

I subsequently emailed Ministers@dwp.gsi.gov.uk (Department of Work and Pensions), copied to my MP in which I indicated the previous correspondence but now asked what understanding the DWP had of the needs of people on the spectrum seeking work, and what guidance was given to staff such as at Job Centre plus. I sent that on 17th September.

There is a danger they will be more cautious about replying because I reviewed the letter in this discussion forum. I might be giving NAS visibility too much credit, but that may have been picked up.

A lot of this depends on what message NAS has given to the Government. I worry that, for all the denials (see moderator's comments), NAS have focussed on those needing extensive support who will not be required to seek employment. That's why I have asked for DWP's understanding of the needs of those in work. I do wonder what message NAS is sending out.

Hence I write to the Government. The Government asks NAS what I'm talking about. Perhaps NAS tells them to ignore me (I'm on the spectrum so not likely to have a sound opinion).

In their reply to my original dated 2nd September, but which took ten days to reach me, there's a paragraph about consultation with leading charities (presumably cross disability). The WCA reviewer agreed with the Government "that further evidence was required to establish whether the charities' proposed descriptors would make the assessment more accurate; we have worked with the charities to build up such an evidence base with the "alternative" set of descriptors being agreed in summer 2012".

My reading of this is that disability charities, including NAS, have been required to provide government with descriptions of what might or might not make someone suitable for work. In trying to be inclusive of those the charities want the WCA to decide do not need to seek employment, I wonder what accommodation has been made for the needs of those the WCA deems fit for work. I suspect that in trying to be inclusive, those on the spectrum trying to be independent by earning a living will end up worse off.

@Longman: are you going to write back to point out that you have had a generic answer and not specific responses?  Or do you feel it's an exercise in futility?

I should probably state, as I didn't make it clear in my previous post, that I have managed to get some support via social services through a 'personal budget', or whatever it's called.

However, even though I have a third party organisation managing the budget, and dealing with issues like tax and national inssurance, it has meant that I am now an "employer" of two "personal assistants".

This in and of itself has created more stress, and though they are able to help with some things the budget I was allocated (which wasn't based on an assesment of what I need, but on some artificial equation) doesn't allow for the level off support I think I need.

Also having to go through this third party in order to access the money adds further complication and stress to the process.

It also does nothing to, because the PAs are neither trained to, nor in a position to be able to, help me get back into work.

This is, in my opinion, not an acceptable, and only barely adequate, state of affairs for anyone on the Autistic Spectrum, particularly anyone like myself who does not have family or friends nearby to help.

I find it hard enough managing my own life, without having to also manage aspects of the provision of support.

Thanks AnilA-Mod.

Can NAS look more closely at how the Government perceives autism. Because my impression, in spite of all you have explained above, is that the Government sees just one category of disability to whom everything applies.

That is they see the adults who would benefit from befriending or social skills training"; the people "whose needs might become acute and they require intensive high level care and crisis management" as the same as those requiring intensive institutionalised support lifelong.

To both national and local government, if you don't need social services care and you don't need benefits, there's nothing wrong with you. They haven't got the message yet that there are people out there struggling with the condition but entitled to no support at all.

I've just had this from my local authority: "We are working closely with the NAS and we are committed to developing personalised services that meet the needs of all severely disabled adults, whether they be on the autistic spectrum or not".

That's a lumpen perspective - autism is a condition where everyone's the same (as if blind people are all the same). The spectrum idea and differing needs hasn't got across, even though my local authority claims to be working with NAS. If you're not "severely disabled" but adversely affected, nothing is going to change.

IntenseWorld provides another illustration of the problem. Where is the research on the experiences of those who by necessity have to live in the real world and hold down jobs? Its as if our opinions and experiences don't count.

Indeed there is a marked disincentive to try to improve your lot, with autism spectrum conditions, because below a certain threshold you fall off a cliff!

NAS still has a lot of work to do to ensure Government understands this ios a spectrum of needs and difficulties, not a one size fits all.

Because what I got back from Mark Hoban MP, Minister for Employment is the notion that the WCA will catch all who need support, and anyone who is deemed able to work has nothing wrong with them.

Hi longman,

I passed your comments to our campaigns team and they've responded below. 

longman said:

I do rather fear that what has happened over the Autism Act and "Leading Rewarding & Fufilling Lives" is we've been left out. While the emphasis should be on those needing lifelong support, there should be some consideration of people at the abler end, whereas in reality there has been none.

But you are not classing the abler as needing lifelong support - and actually we do, because as you say, without it we suffer problems.  Services are meant to be proactive (which in the longer term probably saves them money) not wait until the s**t hits the fan and then react.

Hence if you don't qualify for support at a WCA you fall out the system, and if you aren't able to make a case for social services support, you fall out of that system. There's nothing left over as a safety net. And if your circumstances change, through a relapse or complications, its a real struggle, virtually from scratch, to get help.

Yet the evidence shows that those at the abler end of the spectrum, who are able to blend in more with society, have the highest suicide risk. Also alcoholism is associated with those at the abler end who are self supporting.

I would love to see some statistics on this, perhaps the NAS is unaware of the research (even though ignorance is no excuse).

NAS Moderators, I feel it is time that NAS was more open with us as to what has been said to the Government about the needs of people at the abler end potentially self supporting. Has NAS simply written as off as a trade-off for improved services at the level of those needing support?

Support doesn't only mean care homes, adult nappies and care workers (no offence to any of our lower-functioning peers).  Support means access to advocacy; a named person in every council that address employment issues directly with employers following helpline calls; different considerations for benefits; access to social groups/social skills training; priority with suitable housing; social services training on autism and all sorts of things.  If it is accepted that many lower-functioning autistics will not be able to work, then that is taken as read that they will need supported living, care homes and close care etc. but what about those of us that are expected to perform as "normally" as possible within society, that need supports that are not there?

If that's the case it makes a mockery of the statistics about how many people on the spectrum find stable employment. Because there's little sign of anything being done to help those at the abler end who might improve the statistics. Or am I being too synical to interpret the neglect as preserving a statistic?

And again I make the point to parents. If the object of all the support up to 18 is to make them more independent as adults, how does it feel to discover there's nothing out there. If you appear to improve past the thresholds (like WCA and Social Services) you disappear off the records.

It fills me with despair.  Because as an Aspie I cannot cope with supporting two adult children (when they get there) with ASCs myself.

There are also those of us at the high-functioning end that under-achieved in education due to having no diagnosis at the time and no support.

I have had a fair amount of jobs, social interaction has always been an issue and I have also suffered horrendous work-place bullying and been made redundant as my face didn't fit and had to leave jobs through stress.

Now, I cannot envisage getting back into work as I have regressed so much from lack of recognition and lack of support.  My circumstances have prevented it before now, but practically, that is imminently changing, however, health-wise it seems like something insurmountable.

Other than my circumstances, this is all down to getting a late diagnosis, having a life of no support and very poor treatment by services.

So when services are failing, how on earth can the government expect people to be fit for work?  Even if I got a job (I'm actually not bad at interview) I know I would have problems that make a job difficult and potentially unsustainable.

My plan is to do some further education when I feel able, but still, even with some recuperation and better qualifications under my belt, it changes nothing of the reality of the situation.  I don't think there is local work for the area I am interested in anyway and having children reduces the hours I can work.

I personally feel my only option is to do unpaid advocacy and information provision for people with ASCs through my website and try to make a difference to ASC services where I can.  Even that would be difficult for me as public speaking would be so stressful for me and I don't know that I have the right interpersonal skills even for meetings.

Where is my rewarding and fulfilling life?

Thanks Scorpion0x17, your situation is a good illustration of the problem. We need more like this though to convince NAS

I do rather fear that what has happened over the Autism Act and "Leading Rewarding & Fufilling Lives" is we've been left out. While the emphasis should be on those needing lifelong support, there should be some consideration of people at the abler end, whereas in reality there has been none.

Hence if you don't qualify for support at a WCA you fall out the system, and if you aren't able to make a case for social services support, you fall out of that system. There's nothing left over as a safety net. And if your circumstances change, through a relapse or complications, its a real struggle, virtually from scratch, to get help.

Yet the evidence shows that those at the abler end of the spectrum, who are able to blend in more with society, have the highest suicide risk. Also alcoholism is associated with those at the abler end who are self supporting.

NAS Moderators, I feel it is time that NAS was more open with us as to what has been said to the Government about the needs of people at the abler end potentially self supporting. Has NAS simply written as off as a trade-off for improved services at the level of those needing support?

If that's the case it makes a mockery of the statistics about how many people on the spectrum find stable employment. Because there's little sign of anything being done to help those at the abler end who might improve the statistics. Or am I being too synical to interpret the neglect as preserving a statistic?

And again I make the point to parents. If the object of all the support up to 18 is to make them more independent as adults, how does it feel to discover there's nothing out there. If you appear to improve past the thresholds (like WCA and Social Services) you disappear off the records.

I think you make a very important point, Longman.

I was diagnosed late in life (aged 37ish), and, though I struggled with some aspects of school, I used my 'special interest' (computers and, particularly, writing software) to forge a path through college and on to University (where I achieved a 'Desmond' in BEng (Hons) Software Engineering for Real-Time Systems).

I did then go on to find a job, but, due to various factors, off which I'm now sure my Asperger's was one, was made redundant several times, given the sack once, and then struggled to get back in to work.

The stress of being on JSA then made a medical condition (Crohn's) worse, which made me less able to meet their demands, which made the stress worse, and so on, until I had no choice but to sign myself off and claim ESA, which I only got after appeal, and was put into the 'support' group.

It was during this time, claiming and the appealing for ESA, that I was diagnosed with Asperger's.

I now find myself in the position where I would really like to get back into work, but would need help, because of both my Crohn's and Asperger's, but find there appears to be no suitable help, or support, available for someone like me.

I think if the NAS was likely to help with something like this, I'd have seen evidence of it elsewhere on the website.

I think NAS loyalties lie wholly with those adults unable to be self-supporting, which is understandable. But I don't think they would back an argument for support for those deemed able to find employment, simply because that might dilute the message regarding those in most need.

If NAS feel I've misrepresented them here then Moderators please speak up.

I struggled through a difficult life, but have spent part of that helping others on the spectrum. Those I was helping though were mostly at the abler end going through university.

With that perspective I would like to think that there was progress being made towards better support for those able to be self sufficient to "lead rewarding and fulfilling lives" but it isn't happening.

It remains the case that those of us working are deemed not to have real aspergers or ASC. We're supposed to have been "cured". If we have problems it is our fault. We must be softer, or weaker, or inadequate, or ineffectual in some way. "Leading Rewarding and Fulfilling Lives" is not meant to apply to us.

And the WCA may to some extent define that cut-off point. If you are deemed able to work, you are deemed not to need help. So the fact that you still suffer from problems of workplace socialing, bullying in the workplace, sensor difficulties and organisational problems will be entirely down to you, with no sympathy or help from GPs or medical services, no support infrastructure, and no improvement in understanding. NAS ain't gonna help!

Part of my argument to the Minister is that there is little or no research on the abler end of the spectrum who are able to help themselves. They are not deemed relevant, nor is their experience considered to have any contribution to make to wider understanding of autism. Whereas successful people with dyslexia have been able to do a lot to help better understand dyslexia, that WILL NEVER HAPPEN with autism.

Nor is this just some whingeing "had it easy" grumbling about his lot. Parents out there with teenagers being helped in all directions to pass through into adulthood as fuller and abler people. If that's the path they are on, there really is NO HELP after transition.

How about the NAS writing another letter to the minister on your behalf Longman ? Maybe they will get more non sense out of him and can use the information for a future select commitee hearing ? or maybe the Minister has worked preciously for the NAS and therefore knows the art of what to say to the public.

We're on an uphill struggle with this one.  In my opinion, those that live with ASD's are a minority and a diversity that should be respected and accommodated just like any other.  Currently, the ASD outlook on the world is not valued or validated as having anything to offer so we simply push it to one side.  This will change just like it has with many other diversities.  It is going to be a slow painful process.  All we can do is keep pushing.  Change never happens quickly.

These replies must come out of a public reply manual. The only way to deal with these people is to have and know the clear guidelines by statutory requirement which can be compared to the reality of the situation and they reinforced by the legal challenge by evidence. The minister is not answering your questions because he seeks not to be held accountable.

It is up the NAS who brought the bill to parliament with it partners to sort this out, but the reality is they are funded and thus economical politically connected, so it will not happen, the NAS were probably formed to take control of the Autism Act as the cases were growing day by day, so the NAS are a ruise organisation in my mind. YOU WOULD NOT GET THIS SITUATION IN ANY OTHER DISABILITY AREA. CANCER, LIVER, ETC