I’ve actually thought a lot about the priorities of independently living autistic adults and how they could be better addressed in society. And about what it takes to make that happen.
It seems to me that as well meaning as NAS is there is a definite emphasis on the needs of autistic children and autistic adults who are unable to live independently. There may very well be good reasons for this and one reason might be that independently living autistic adults are more able to advocate for themselves. However in politics the voice of one person speaking on their own behalf is all too easily lost.
What might be useful is an autistic run pressure group dedicated to furthering the interests of independently living autistic adults. A kind of autistic union if you like. A point of contact to coordinate and facilitate political campaigning on matters of interest to independently living autistic adults.
A petition with 100 signatures delivered by a recognisable organisation has more impact than 100 random cursory letters sent at different times. And 100 well composed letters written with and containing carefully crafted resources and sent as part of a targeted campaign can get people's attention.
So now we are well into the land of hypotheticals. What should the priorities of such a campaign group be?
It seems to me there are 5 areas of particular concern
- Social inclusion
- Employment
- Adult education
- Public services of which the 2 most important are
- Healthcare / social care
- Welfare / benefits.
My personal priority right now is social inclusion but there have absolutely been times in my life where each of the others was the pressing need.
To some extent the law already covers these areas. The equality act (2010) covers adult education and social inclusion (in the form of services like social clubs, access to venues etc) but these laws need to be enforced by private individuals in the county court. Issues relating to employment go through the employment tribunal system which is a bit cheaper and less risky to invoke. Issues relating to autism and public services like benefits and healthcare are subject to judicial review which is extremely expensive and basically impossible to do without a lawyer. Although my limited understanding is legal aid is sometimes available.
But for most practical purposes in the county court or an employment tribunal autistic people must represent themselves without legal support. The equality and human rights commission has a mandate to fund cases about disability discrimination but as a matter of practice they’ll only do so on appeal because appeals set legal precedent. What this means is unless you’ve got a very determined and competent autistic litigant with some spare cash the case is never going to be won so it can be appealed (except maybe at employment tribunal. most of the case law on autistic disability rights, and disability rights in general, is employment case law).
Autism is very definitely a disability under the act. The argument that high functioning autistic people function too well to count as disabled is occasionally made but the ruling in Elliott v Dorset County Council has made it pretty clear these arguments won’t hold water.
However educators, employers, service providers etc do not see the difficulties of high functioning autistic people as a disability but as bad behaviour. There is no awareness that what they see as bad behavior is in fact something they may need to accommodate or make allowances for in order to comply with disability law.
So there is clearly a two pronged approach, the first being to educate organisations about the fact that what they think of as an adult's bad behaviour may in fact be autism and that there are legal obligations connected to that. Secondly this needs to be backed up with legal authority. One way of doing that is trying to get precedents established in court. Another weaker option would be the guidance documents issued by the equality and human rights commission which are designed as an official considered opinion on how the law should be interpreted. They’ve never issued one on a specific disability before but I would argue autism is a special case.
But the reality is there are generally 2 ways to reach these organisations. Through direct campaigning or through politics by pressuring the government to pressure organisations. And in the case of healthcare and benefits / welfare the organisation is the government. So engagement on a political level is vital.
We can ofcourse approach government ministers directly but MPs have much more influence and a number of leavers to squeeze responses out of them. If we’re registered to vote we can all approach our own MPs to raise concerns and points but also there is a collection of MPs who have organised into a group specifically interested in autism and it should be possible to approach this group collectively. Since it’s coordinated by NAS it’s another reason to try and keep good relations with NAS as you push the agenda for independently living autistic adults.
So broadly speaking I think the objectives of such a body should be
- better understanding of how high functioning autism presents in adults among organisations that might misinterpret it as ‘bad behaviour.’
- Establishing legal presidents that pin down the rights of autistic people under existing law.
- Improve guidance on legal compliance with disability law and autistic rights. Either by publishing our own or by encouraging more authoritative bodies to publish specific autism guidance.
- Challenge government practice on the way benefits / welfare and healthcare / social care is delivered and triaged.
And of course some thought has to be put into what kind of resources would actually be useful in such an endeavour. The following come to mind.
A set of short pamphlets, containing about one a4 sheet of normal sized text, intended as a supper short introduction to autism, autistic rights and the law. We’d want ones targeted to the 3 main areas of concern not controlled by the government. Namely:
- Education / university / colleges
- Employers
- Service providers - venues / events / hospitality / organised activities / clubs and organised groups.
We’d also want as a resource, legal guides on complying with equality law when dealing with autistic people in each area. One for each aforementioned area. We’d have to be super careful to ensure the proper disclaimers were attached to prevent us from being accused of offering professional legal advice but other people have created such disclaimers on similar documents. The equality and human rights commission itself has such a disclaimer on its advice. And if the objective is to get EHRC to publish autism specific guidance, publishing our own isn’t such a bad idea. After all, if they object to what’s in our guidance we can respond by suggesting they publish their own autism specific guidance.
As a resource it would be immensely helpful to start building a library of well documented case studies of specific instances where we believe independently living autistic adults have been treated unlawfully or in a way that should be unlawful. This resource of case studies is something we could use in campaigning and to illustrate the issues to MPs and the government.
The collection of case studies also facilitates the potential for intervention through lawsuits. If a legal fund could be established to bankroll those cases in the county court that have the potential to set precedent if they are later appealed at which point hopefully it might be easier to get the EHRC to pick up the case. To take things to that extreme some sort of formal charitable entity would have to be established to hold the money and give donors confidence it wouldn’t be misappropriated.
This is all very hypothetical but I’d be curious about other people's thoughts on the need for something like this?
