To Norman Lamb: Ways to Actually Help Autistic People

The Lib Dems’ health spokesman, Norman Lamb, is normally pretty good. On mental health, especially, he’s done an extremely good job. But yesterday he co-authored a piece about autism that falls into almost every trap.

The reasons for this can be found in one sentence early on: “As a politician with a particular interest in autism, and a parent of an autistic child, we have come together to set out a simple plan of ideas”. Note what’s missing there. This is written by a non-autistic politician, and a non-autistic parent campaigner. No autistic people were involved or consulted at any stage — they forgot the most important rule: “nothing about us without us”.

It doesn’t help that the non-autistic “autism campaigner” is the parent of an autistic child. The interests of autistic people and the interests of their parents can be, and often are, very different. And while there are good neurotypical parents of autistic children (I know several), there are far more who think their own interest in having a “normal” child overrides their child’s interest in being allowed to live their own life.

When thinking about autism, in this respect, it’s best to think about homosexuality in, say, the early 1970s, when it had recently been legalised and societal attitudes were much less tolerant than they are today (which is not to say that homophobia is non-existent now, of course). A majority of parents of gay children, then, would have wanted a “cure” for their child — even those who genuinely loved their children would want that.

The “autism campaigner” in question is a particularly bad example of the “autism parent”, though. When confronted by actual autistic people — many of them experienced campaigners and researchers themselves — he refused to acknowledge even the possibility that he might be in the wrong about anything, or that autistic people might know their own needs better than he did. He was patronising and abusive.

So it’s not a surprise that that piece, which according to its opening paragraphs is about autistic people’s difficulty getting work, completely ignores things that might actually help in that. The only mention of autistic adults *in the entire piece* is:

Transitions to adulthood are a vital area where much more needs to be done. There is very little information on whether children find it easier to work in certain professions (for example ones where routine and structure is required).

That’s it. *Transitions* to adulthood are important — because they involve parents. Note the tell in the second sentence there — “little information on whether children find it easier to work”.

Unless this is an anticipation of the government removing child-labour laws post-Brexit, it says a lot about what they actually think matters. Of course all autistic people are “children”. Of course we are. We don’t matter once we stop being a burden to parents.

In comparison to that one mention of autistic adults, there are eleven mentions of the word “parent”.

It should be borne in mind here that the *vast majority* of autistic people are adults, not children. While we die much earlier than the general population (often not from any physical illness, but from suicide caused by societal attitudes towards us — autistic people are nine times as likely to commit suicide as neurotypicals), that still means that we spend more time as adults than we do as children.

But this focus on parents is the reason for the worst of the recommendations in this piece — “Early diagnosis and intervention enables small changes to be made before behaviours become so ingrained that they are almost impossible to change.”

What this is talking about is “Applied Behaviour Analysis”. This uses Skinnerian behaviourist psychology (a widely-discredited approach which denies that people have any interior life at all) to try to change children’s behaviours. Or, to put it more simply, it’s punishing children for being autistic until they learn to act like they’re not.

As with anything, there are opinions on all sides of this (and I say this because I *do not speak for all autistic people* — just for more of us than a “parent campaigner” ever will), but I only know of one person whose opinions on autism I respect who thinks there is even the possibility of anything good about this, and even then only in very limited circumstances. The vast majority of autistic self-advocates consider it child abuse, plain and simple. It’s exactly equivalent to “gay cure therapy”.

Even if you don’t go that far, though (and again, the vast majority of autistic self-advocates do), the Lib Dems’ constitution says, in its very first sentence, that our purpose is to build a world where “no one shall be enslaved by poverty, ignorance or conformity”. ABA is the epitome of enslavement by conformity.

And not only is it abusive in itself, by instilling the idea that you should react in the way that neurotypical people around you want or expect, rather than according to one’s own emotions, it makes autistic people *much* more vulnerable to abuse by others. If you’re punished every time you say “no”, your capacity to refuse consent is taken away.

So, if the solution to autistic people only having a 17% employment rate isn’t child abuse, what *would* help? What possible solutions could there be, if even punishing children for not smiling doesn’t work?

Well, I’m an autistic adult who has held down jobs for most of my adult life (I’m currently freelancing, but spent the last twelve years in continuous employment). My recommendations will only help *some* autistic people, because they’re based on my own experiences — the challenges I’ve faced in my time as a software engineer or a technical author will not be the same ones that an autistic plumber or bricklayer would face — but they’d be a good start.

My first recommendation is a universal basic income. This would, of course, benefit more people than just autistic people — but then as with most accessibility and rights issues, one tends to find that improving things for disabled people also improves them for not-yet-disabled people.

Even if we manage to triple the employment rate for autistic people — an absolutely massive result — that would still leave almost half of us unemployed. Yet the whole ethos behind our current benefits system is about getting people into work. For autistic people who are not suited to the world of conventional work — probably a majority of us — this leads to benefits sanctions and, for a lot of people, just not getting any benefits at all.

Theoretically, disability benefits should cover this, but for those autistic people who are not formally diagnosed (which is the majority of those with no comorbid learning disabilities, as the waiting list for diagnosis is essentially infinite — the “normal” wait for an adult diagnosis is two years, but you only get that “normal” wait if you keep putting pressure on the overworked diagnostic services. Most autistic people are incapable of applying that kind of social pressure, and so just don’t get diagnosed if they weren’t as a child — and almost no autistic people over the age of thirty or so had any kind of diagnosis) it’s essentially impossible to claim those benefits. A basic income would stop us falling through the cracks.

Second: massively more funding put into diagnosis. The diagnostic tests themselves only take a very short time. There is no reason there should be *any* backlog at all on this. While diagnoses are in some senses unimportant — they don’t, after all, lead to any kind of “cure” — they can be vital for people who now at least know *why* they’re different, and can help mental health enormously.

Third: ban open-plan offices open-plan offices are bad for everyone — they cause high blood pressure, stress, cardiac problems, and increased transmission of infections. But they’re especially bad for autistic people, who don’t have the neurotypical ability to ignore our surroundings. For many of us, they’re essentially torture chambers. They don’t even provide the efficiency savings to employers that are their main justification — they tend to lower productivity, rather than raise it.

Fourth: Strengthen flexible working rights. One of the better things the Lib Dems did in government is to give people the right to request flexible hours and working from home. But that’s only a right to request these things, not a right to be given them. The default should be that unless employers can demonstrate an *overwhelming* business case, working from home and flexible hours should be an employee’s basic right. This would help those autistic people who simply can’t be around other people for extended times, or who have sleep conditions which force them to keep odd hours.

Fifth: Ban interviews and “culture fit”. Job applications should be anonymised, and people judged only on their ability to do the job, not on how well they fit into a corporate culture. This would also help with people discriminated against due to gender, sexuality, race, and class. Similarly, “attitude problems” and similar should not be grounds for bad evaluations.

And finally get rid of ‘professional appearance’ standards. Many autistic people have sensitivities to texture that mean we are unable to wear certain fabrics or some styles of clothing. Others are unable to shave, or to wear certain cosmetics, or in some cases to have their hair cut. Unless someone’s job is actually to serve customers, dress and other matters of appearance *should not be a consideration in their job*.

There are many more things I *could* suggest, but those would do for a start. But the most important thing of all, as I’ve said — If you want to know what would help us, ask us. Not neurotypical “campaigners”, not eugenicist organisations that want to get rid of us. *US*.

Just ask. We will tell you.

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19 Responses to To Norman Lamb: Ways to Actually Help Autistic People

  1. David Brain says:

    Amen to all of that. Especially #3, which is something I still don’t understand in general, given the overwhelming evidence against it. (I can only assume that it’s the solipsism fallacy at work again: “I work well in this environment and I got promoted, so it must be the best environment.”)
    And it’s not as if those things are difficult to do. Well, OK, the first one might be, but only because the perceptions around it are wrong, not because of the idea itself.

    • Andrew Hickey says:

      I think it’s the fact that many managers — and even more, owners — want to be able to see their employees at all times, out of a sense of ownership. “Look at all these ‘resources’ (a word that makes me twitch in this context). They’re all mine! Obeying me!”

      • Iain Coleman says:

        I dare say some do, but in my experience a major driver towards open plan working is that you get more desks per square metre, and hence save money on office space. (his also produces the drive towards hot-desking). One could quite reasonably argue that reductions in productivity more than cancel out these savings, but office rental is a straightforward budget line item whereas productivity is not, so good luck with that argument.

    • po8crg says:

      Open plan? Some managers like open-plan because they can see all their workers at any time. If you’re thinking panopticon, then you’re right.

  2. patrickhadfield says:

    I hope Norman Lamb reads this!

  3. glyncoch says:

    Very thought provoking. I am the parent of a 33 year old with Downs and Autism, and I could have written an article similar to Norman Lamb’s myself. But although my son could not hold down a job, I agree that adults with these conditions are often not provided for. It seems that no one is doing anything specific for Downs adults – many of whom can also hold down jobs, drive cars, get married etc – because diagnostic tests now mean that many are killed before birth. Its not just pressures to conform that we need to fear.

    My son was not diagnosed with autism until after transition to adult services. Having that diagnosis made a huge difference in how we understood our son, and helped us explain and learn to deal with many of his behaviours. I wish we had had that knowledge much earlier.

    Going back to education, I have learned that most decisions about education are made to benefit adults, not children. About a third of those neuro-typicals in private education are permanently damaged by their experience, as you saw with the Cameron government where Ministers could not understand why sending a million people to food-banks was not a price worth paying. (The Brexit vote was almost certainly affected by their cruel policies.) But lack of empathy is not the only damage. Suicide is also quite common, and in the closed environment others cannot help being affected by such grim events, or living with pupils who have no empathy. Or just being isolated from their home communities.

    In special needs education, awards are often given for pretty, clean and well equipped schools rather than educational outcomes. Meanwhile even the best schools are overwhelmed by pupils being pushed down from mainstream schools in order to boost league tables. Overcrowding means the best teachers having to substitute for the too rare personal care assistants. Teachers who spend time toileting severely handicapped children have less time to teach. (seems logical to me!) Children at special needs schools are not allowed NHS physiotherapy as the schools have “their own physio” contracts. However, children who have weekly sessions at the age of 4 get 2 or 3 sessions a year in the special education system.

    In spite of the underfunding and overcrowding of special needs schools, at least they are funded by the Ministry of Education. Adult services are funded largely by Social Services who in turn are funded by cash strapped County Councils. It takes years to set up programmes to help adults which run for about 6 months before everything is reorganised, and a minimal service is provided while hundreds of hours are devoted to meetings and assessments before a new programme is set up only to be reorganised again after 6 month or so. At this time of year we need to tell the authorities that

    ” people with special needs are for ever, not just for Christmas.”

    Well, what’s good enough for a Christmas kitten, should be available to us shouldn’t it?

    (Sorry, I have had over 30 years to build up to that, and it is clear that the “authorities” just don’t get it.)

  4. Pingback: Interesting Links for 11-12-2016 | Made from Truth and Lies

  5. Iain Coleman says:

    I can’t agree with the fifth recommendation. Partly because I find interviews very useful in digging into the details of a person’s past experience, and partly because if I’m going to enter into a long-term relationship with someone I’d like to meet them first. Also, all of my staff have interaction with academic and professional colleagues as an important part of their roles, and so it’s important to have an idea of how they perform when meeting new people and building relationships with them. I would seriously balk at hiring someone purely on the basis of their written submissions.

    • Andrew Hickey says:

      With all of these, of course, there’ll be arguments against — some possibly even very compelling. The challenge in each case for politicians is to decide how to prioritise the potential positive effects for autistic people against the reasons for those situations to exist.
      It would be perfectly reasonable for a politician to look at that list and decide not to do any of them, because other things are a higher priority than the benefit those measures would provide to autistic people — and it would be even better for someone to find ways to provide those benefits without any potential drawback.
      So I’m not saying as a hard and fast rule “this precise set of steps must be taken”. What I am saying is that that list is what a list of policy measures that help autistic people who can’t currently find work looks like, in a way that “give parents of autistic children a card that they can show people who get annoyed at their kids” just isn’t.
      Frankly, I’d be happy if any one of those things in the list ever happened, over the moon if two did, and convinced that we were in some kind of utopia if any three did ;)

    • thamesynne says:

      I’m autistic, and the only interviews I haven’t screwed up were the one in which it turned out that almost everyone else working at the (very small) company seemed to also be on the spectrum, and the one for someone who, frankly, was looking for someone vulnerable and easy to exploit – and that job burned me out so completely that not only have I not worked for the decade since, I’ve barely been able to deal with people AT ALL, even in tiny doses, for most of it.

      It’s hard to avoid asserting that merely to require autistic people to attend an interview at all is to actively discriminate against them. You’re basically subjecting them to the worst possible combination of stimuli and expecting them to present their best possible face back. It isn’t going to happen, period.

      And indeed, everything you said backs up this view. Basically, you just said “I won’t hire autistic people” in about four or five different ways. So, er, thanks for your help there…

      • Iain Coleman says:

        A weaker form of Andrew’s proposal, which might prove more successful, would be to only have interviews where personal presentational skills are part of the job spec. In practice I suspect this would end up being gamed quite a lot by people who want to hold interviews in any case, but at the margins it may encourage some employers to think harder about the purpose of having an interview, and open up some jobs to good candidates who will not interview well. When interviewing is the standard practice, it is worth opening up the question about when it is and is not appropriate.

        For a lot of jobs, however, including the ones I interview for, the demands of being interviewed are closely related to the demands of the actual job, and hiring someone who is not able to manage an interview is only going to result in a painful and frustrating probationary period for all concerned. In that respect, interviewing for these jobs is only discriminatory in the same sense that the fitness test you have to pass before you can join the army is discriminatory.

        • Andrew Hickey says:

          That’s fair enough — I’d have no problem at all with “people skills” being tested for when they’re genuinely part of the job, and I accept that’s sometimes the case. Holly, my wife, would very much like to be a train driver, but accepts that being legally blind puts her at something of a disadvantage there, and I’d have a similar lack of success in a sales job based around personal charm. I actually thought I’d put in something similar, but rereading I see I only put that caveat in for the one about appearance and dress codes.

          And yes, I agree that the rule would be gamed, just as pretty much all exceptions and loopholes in employment law are. I still think it might be worth doing.

  6. glyncoch says:

    Thamesynne, you appear to have had a terrible time, but your experience does highlight the problem with interviews.
    We used to produce a short-list from the paperwork (CV etc) submitted to us, and only interview people that we thought could do the job. In the interview we asked simple factual questions, which were basically those required to fill in the form that the “pay office” required of all new employees. We would then broaden out into a general discussion intended really to find out how we would get on. Depending on the candidate, they could tell us about their experience, or if they were shy, we would talk about the job etc. At some stage the candidate would get a guided tour from one of their future close colleagues. At the end of the day the two of us in the “formal” interview and the tour guide would get together and make our decision – often the tour guide’s opinion would be as important as the “formal” interview. From the organisation’s pint of view this system of interviewing never failed.
    But how would you cope with such an interview? Although we called it an interview, it was never meant to be an ordeal for the candidate, and we did not probe heavily unless we detected deliberate evasion, or a sense that ability or experience were being exaggerated. In your industry, perhaps the culture was different and interviews were more probing, but in ours we were far more interested in an ability learn and get on with colleagues, and contribute to the team.
    But the question remains, if interviews would not work for you, by what other means would you like to be selected? CVs, exam certificates, and references only show part of an applicants character or ability. Even passing a specific employment exam would not mean much. Employers would always want to meet all the suitable candidates for a job. Perhaps calling that meeting an interview is what is wrong. What would you think of a social gathering for candidates?

  7. Andrew Hickey says:

    The problem is, job interviews don’t work for *anyone*. There have been a lot of studies showing that job interviews actively impair the ability of employers to choose good candidates. I don’t have the links that convinced me of this, unfortunately (they were linked from Brad Hicks’ livejournal, and unfortunately it’s basically impossible to use Google to find anything on that page, which is a shame because he was talking specifically about his problems in interviews as an autistic person with PTSD), but all seem to make the point about them being literally worse than tossing a coin.

    Glyncoch, your “intended really to find out how we would get on” is an example of the problems Hicks pointed out. He made the point that when you’re interviewing for a job, you’re actually interviewing to find someone you’re going to spend eight hours a day every day with, so most people are actually interviewing for the job of “best friend” rather than for ability to perform the work.

    Other than other autistic people, almost *nobody* thinks they can “get on” with autistic people. Most of us don’t send out the right social cues in terms of body language, tone of voice, and so on. Some of us can, but at a great cost in energy and concentration which makes it difficult to do anything else. Neurotypicals, in general, don’t like being around us much.

    If an interview process tests for interpersonal compatibility *at all*, it will pretty much by definition be discriminatory against autistic people. It will probably also be discriminatory against people with other disabilities and members of other minorities.

    And while I respect that most neurotypicals don’t want to be friends with me, and I wouldn’t dream of forcing my company on them, it *does* make it rather difficult to survive when one’s ability to earn a living depends on passing a neurotypical’s likeability test.

  8. glyncoch says:

    Andrew I worked in Agricultural Research, and I think that there were quite a few people in the organisation who would have been considered “on the spectrum”, who were very valued colleagues. When I said “to see how we would get on” I meant just that, many of us would take a long time to sort out who our best friends were. But perhaps our industry was more tolerant of people who might be considered to be obsessive / single minded / autistic then other industries. Sadly the solution for someone with a bad experience of interviews, might be to try a different industry, where the attitudes to potential colleagues might be different. However I acknowledge that changing industries is a major decision, as I for one, define myself by my industry and fought to stay in it, in spite of reductions of funding and lack of promotion opportunities, rather than change to an expanding industry where there may well have been more opportunities and better pay.
    I think, Andrew, that you are running yourself down when you say “And while I respect that most neurotypicals don’t want to be friends with me, and I wouldn’t dream of forcing my company on them,..” Your writings are often very impressive, and you are quite confident about engaging in written debate with “neurotypicals”. (Whoever they are – we all carry our burdens.) In a work situation its what you know, and what you can do that count. But those who “know” and who “can”, soon earn respect, and respect quickly turns into friendship.

    • Andrew Hickey says:

      I’m really not putting myself down at all. One reason that so many autistic people gravitated towards the net in its early years is that text-based communication is *much* easier for a lot of us — it’s asynchronous and it cuts out a lot of variables like tone of voice and body language (and, in the case of some non-verbal people, the ability to speak itself).
      Now there are advantages and disadvantages to that — I’ve been told by several people who first knew me online that they were amazed to discover I had a sense of humour at all, as my writing reads as very dry and pedantic to others and I apparently seem very angry and tightly-strung (this was several years ago — I *hope* I seem less so now, though I fear I don’t) — but for autistic people who have sufficient reading and writing ability, text-only communication is a godsend.
      (This is one reason why I am very unhappy about the increased tendency to communicate online using streaming videos, Skype, and so on. The web is slowly becoming a place where I am as disabled as I am in the wider world).
      I don’t pretend to be a uniquely horrible, unpleasant, person to be around, or anything like that — most days I can manage (at great effort) to fake neurotypicality well enough to be tolerated. But I am not a likeable person in real life. I have very few friends, even fewer who are neurotypical, and even fewer than *that* who I first knew offline. And while I’m married, I’m married to someone who first got to know me well through text — I’ve only had a couple of relationships in my life, and none of them were with women who lived on the same continent as me when we first got together, because no woman who got to know me in the flesh before reading my words has ever been interested in me.
      So no, it’s not putting myself down. Most neurotypicals don’t want to be around me, because the things they want from other people are not things I can provide. It’s not something I feel particularly bad about, though — obviously it would be nice if literally everyone in the world liked me, but in general the people who *do* like me seem for the most part to be intelligent, interesting, kind, and funny people, so I think I’m getting a fairly good selection anyway ;)

      • glyncoch says:

        Andrew you are doing very well at “faking neurotypicality”, I would not have guessed that you were otherwise. And your biography is not as rare as you think. (Most people seem to exaggerate the numbers of their conquests).
        And I agree with you absolutely about videos. They take a long time to say very little, and are very difficult to search,if you want to check particular bits of information. If you want to Google an organisation, for example, that was mentioned in the video you cannot copy and paste it, you have to guess at the spelling. I spend a lot of time suggesting that the BBC, for example, should publish text versions of their programmes. (And why not use the script (where relevant) for subtitles, instead of un-edited nearly simultaneous audio typing?)
        And there are many people other than those with autism who have hard shells. Many, also for very good reasons. I once worked with a elderly (it seemed to me, then) lady scientist with a reputation of being a real dragon. Many people, who did not know her, were scared of her, and she certainly did not take fools gladly. She once asked me to supply her with an irrigation tank to water her experiment. I did as asked, and then followed a fortnight of furious accusations that the tank was not big enough. I stuck to my guns, and in the end she confessed that the mistake was hers, and from then on we were the best of friends. But she was a German Jew who had escaped from Germany to the UK in the early stages of the war. She had lost most of her family, and had to work very hard to overcome the handicaps a)of what was really a form of PTSD and b) being a female scientist during the middle years of the 20th century. And did she succeed! She had a world class reputation, and her work gets more and more relevant. Colleagues who knew her were very loyal, as she was to them.
        Going back to interviews, I feel sure that the difficulty people with autism face is not as much to do with the interview itself, but the way in which its is conducted. I remember once going to an interview where there were 12 people on the other side of the desk, one of whom was asleep. I doubt that they ever found a suitable candidate, as any candidate with any humanity at all would have been frightened off. In another interview I was forced to sit in a south facing picture window in a tiny office, with the door closed on a very hot day. I am sure that I did not make a good impression there! But you win some and you lose some. I would not work for anyone who made me feel uncomfortable at interview, because that would probably be how I would feel in the job. The interview is a two edged sword, and employers need to understand that they are being tested as well. But remember that someone recently qualified with a PhD will have to present their thesis to a meeting of maybe 100 very knowledgeable colleagues straight afterwards.

        If you pass the interview you may still be faced with a baptism of fire!

  9. Seth says:

    This is probably your best post ever, and all the good points have already been made. Having been involved with several such decisions, open plan is almost always about saving on rent. I’m not sure its true about wanting to keep an eye on employees – unfortunately most managers I know want as little contact as with their employees as possible. The good thing though is that every open plan company I’ve worked for has also pushed work at home for the same cost saving reasons. As someone who is very shy, I like open plan as it forces social interaction I wouldnt otherwise get. I also have a history of depression, and the thought of being at home all day alone is scary to me. Having this option is the best of both worlds – if I have a deadline that I need to make, I work from home on that day to avoid distractions. Large corporations especially have no excuse for offering all three types of work environments. For certain professions, especially with a large number of employees, I totally think this is an issue that could be legislated with, similar to US ADA regulations.

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