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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