Category Archives: politics

Tony Benn: the legacy

Herbert Shapiro is probably not that well known here in the UK. The son of Russian, Jewish immigrants he was a professor of history in the United States from 1964 until his death, aged 84, in 2012. His speciality was African American History and he wrote numerous books and articles on the subject. His obituary writer, fellow historian, Roger Daniels singled out his magnum opus, White Violence and Black Response: From Reconstruction to Montgomery (1988), as “Outstanding.”

Herbert Shapiro was not just a student of black civil rights. He was an active supporter and on March 25, 1965, marched on the last day of the historic march from Selma to Montgomery, Alabama as part of a delegation of historians. Daniels also pays tribute to his work as a trade union activist who helped to,

“transform the local chapter of American Association of University Professors into an effective collective bargaining unit, and to participate in two brief, successful work stoppages that improved both wages and benefits for regular full-time faculty.”

When I heard of the death of Tony Benn my thoughts turned at once to Herb and his wife Judith, both of whom I met on a train many years ago in the UK. As I recall our conversation began because Judith noticed a book I was reading about autism. She was an educator with an interest in the subject. The conversation turned to politics and I discovered that they were combining their holiday with a visit to their old friend, Tony Benn.

We parted on good terms never to meet again but kept up a sporadic correspondence. When the second Gulf War began Herb and Judith posted me details of the anti-war movement in Cincinnati. I posted them pictures of the million strong anti-war demo in the UK. Tony Benn, of course, was a leading spokesman for that movement. And, of course, in numerous tributes he has been damned with faint praise for holding to his principles, qualified by pointed reminders to the political outcomes. Benn fought and lost as did those of us who fought alongside him.

But those who seek to diminish his legacy in this way miss the point. Men and women of goodwill, courage and integrity who do what they think is right without regard for personal gain or ambition will always be found wherever there is injustice. Sometimes our courage might fail us. Too often we are outnumbered or outmaneuvered. But sometimes we prevail. Herb began his teaching career in a segregated college in Georgia. He introduced his students to African American history and lived to see an African American President of the United States of America.

Today’s obituary writers are eager to tell us not only that Benn failed, but also that he represents a dying breed, the like of which we may never see again. (They hope!) But so long as we are seeing levels of inequality in which the richest hundred people in the UK own as much wealth as the poorest 18 million (30% of the population) the conditions exist to create more not less people like Tony Benn. It is not a question of if but when.

Furness National Autistic Society Push for Action

furness pushThe National Autistic Society has been running an unusual campaign, Push for Action, that is probably one of it’s most successful in terms of participation and outcomes. That is not what makes it unusual. The NAS has a track record of successfully running campaigns that impact upon public policy regarding autism. Its most high-profile success to date was the campaign to get the Autism Act onto the statute books. This Act specifically tasks relevant government departments, along with local health and social services with identifying the needs of autistic adults and taking steps to meet those needs. Unfortunately, implementation of the Act has taken place in the context of the severest cut back in public spending ever that flowed from the financial meltdown of 2008 and the subsequent years of economic recession.

Which brings us back to Push for Action. The most important component of the Autism Act was an obligation on government to develop a coherent strategy for supporting adults with autism. That strategy is up for review next year. It is not perfect but the fear is that the government will use the economic crisis as an excuse to lower expectations and further weaken the provisions of the strategy. Push for Action is a response to that. What makes it unusual is that, instead of targeting senior politicians and civil servants in central government the campaign has been deliberately local. The success of the Adult Strategy depends on what happens in local health authorities, local government commissioning agencies, local education and housing departments. So people have organized locally

1. to identify good practice and celebrate it

2. to put pressure on local bodies that are not yet meeting their legal commitments

3. to raise awareness and understanding of the problems that local adults with autism have to deal with.

One brilliant idea has been the travelling Push for Action Button. Nicknamed Jenson, after the eponymous formula one racing driver, it has toured the country, providing a focus for local campaigners and helping to bring campaigners together from around the country. I saw this at first hand when Jenson came to Barrow-in-Furness. Furness NAS had already been busy signing up supporters and also has links with the local police going back to the launch of an autism alert card by Cumbria Constabulary in conjunction with the NAS. So when they knew that Jenson was coming they arranged for the news to be projected on the side of Furness House in the town’s main square from an upstairs window in the local police station. projection

I heard about it in a tweet on Tuesday night while sharing a pint with Tom Madders, who leads the campaign team at the NAS and was in Barrow for a Push for Action event the following day. We headed over to the town centre and met up with Piers Wright, who had carried the Button over from Sunderland that evening.

Piers and @TomMaddersNAS #pushforaction in downtown Barrow-in-Furness.We made the most of this photo opportunity and then had another beer to discuss the campaign. I was impressed by the enthusiasm of Tom and Piers, following a punishing schedule around the country (Sunderland, Barrow, Carlisle, Liverpool, Birkenhead in three days was just this segment of the tour) They were impressed by the enthusiasm of the NAS jenson1members and branches around the country and the warm reception from other autism organizations like Sunderland’s Autism Research Unit and Autism in Mind who had turned out to welcome Jenson and add their weight to the campaign. And this local campaigning is having an effect. Areas where implementation of the strategy had been minimal or tokenistic are taking real steps forward now. One problem with the Strategy is that a lot of the backroom work has been done in many areas but up front, positive action and new services are yet to emerge. This is beginning to change as the campaign brings people together and pressure to bear on local authorities.furness forum

Forum 28 hosted Barrow’s Push for Action event. The Mayor turned up with local media in tow and over a hundred new people signed up for the campaign. I could not attend as I was teaching that day. But I was heartened when one of our parents arrived in school sporting her Push for Action T shirt. Jenson was supposed to visit the school as well. But he got a better offer from Border Television News. Another time perhaps.

gerryLast I heard he was being met by Gerry Marsden of “Gerry and the Pacemakers“ fame after taking a “Ferry cross the Mersey” from Liverpool to events organized by Wirral Autistic Society.

Push for Action is a local campaign for local people that is having a national impact. Instead of the normal route of an advocacy organization like the NAS mobilizing its support to lobby government ministers and MPs, Push for Action has created genuine grassroots support for the campaign amongst people whose lives are not directly affected by autism. This popular support has a way of feeding into the political process that can be more effective than professional lobbying campaigns. As a result half of all MPs are aware of the campaign and over a third have come out in support. The government has agreed to a proper public consultation when it reviews the strategy next year. Local authorities are to be given stricter criteria for assessing compliance with the strategy. The government has agreed to collect local data on adults with autism for the first time and support the right to advocacy for vulnerable adults. Perhaps best of all, given that doctors in general practice are the gatekeepers and under new health service reforms, the commissioners for many services, The Royal College of General Practitioners has agreed to make autism a learning priority for GPs for the next three years.

So congratulations to Tom, Piers and Jenson. But most of all, thank you to all those people who give their time to build NAS branches and all the other organizations and individuals who have come together around the campaign to guarantee a better future for autistic adults.

Libel Reform Under Threat

 

Britain has some of the worst libel laws in the world. They are used to stifle legitimate comment and bully writers who are trying to expose the excesses of the rich and powerful. Simon Singh recounts how:

In 2005, the Saudi billionaire Sheikh Khalid bin Mahfouz sued the American author Rachel Ehrenfeld for publishing Funding Evil, which discussed how terrorism is funded. The case was held in London, because an international businessman such as Mahfouz can claim a reputation in almost any jurisdiction and the book was sold in this country; in fact, a grand total of 23 copies were sold in Britain.

Mahfouz was able to play high-stakes poker with Ehrenfeld and push a $1 million stack of chips on to the libel table. Ehrenfeld and her publishers could not afford such losses as it would have meant bankruptcy, so they backed down, settled early and paid £30,000 damages and £80,000 in costs.

Simon himself has suffered from the same law. He was sued when he accused the British ChiropractIc Association of promoting “bogus treatments” Two years later he finally won his case but then faced a battle to recover his legal costs of at least £100,000. Simon’s case attracted a lot of support. The appeal court judge expressed concern that legitimate matters for public and scientific debate should not be stifled by the law. One result is the Defamation Bill, an attempt to reform the libel law that is close to becoming law. But it is under threat. There is a bid to remove a clause that requires corporations to demonstrate proof of harm and not merely claim damage to their reputations when initiating libel cases. This is important. It raises the bar for rich individuals and institutions that use the threat of libel action to intimidate opponents who cannot match their deep pockets.

English PEN, which strives for freedom to read and freedom to write is part of the alliance promoting the bill. I reproduce their most recent statement below and urge readers in the UK to act to defend the integrity of the bill.

A new threat to libel reform – help us stop the corporate libel bullies libel-reform-campaign-pic

Four days before the Defamation Bill has its final and decisive debate in the House of Commons, we need your support to ensure that the libel reform campaign succeeds in reforming the law

Conservative MP and libel barrister Sir Edward Garnier is trying to remove a clause that would limit companies’ ability to use libel threats to intimidate critics into silence. The amendment was passed with an overwhelming majority in the House of Lords. The attempt to remove this clause will be voted on during debate on the Bill on Tuesday 16 April.

Companies can claim damage to their reputation, but never have to show that damage actually occurred.  The threat of costly legal battles with large corporations is what keeps many journalists, bloggers, scientists and human rights campaigners silent. The bullying of individuals by companies and silencing of whistleblowers has been one of the central concerns of our campaign, and a key area for reform.
Please write to your MP and tell them not to support Garnier’s amendment.

We’ve heard that the Conservatives might back Garnier on this, and that the Liberal Democrats will join their Conservative colleagues, even though restricting corporations from suing individuals unless they can prove harm was a commitment in the Liberal Democrat manifesto. Two parliamentary committees have also supported this reform. Please write to Nick Clegg and David Cameron and urge them to tell their parties not to support Edward Garnier’s amendment, and to make sure the clause on companies becomes part of the Defamation Bill.

Read our briefing for MPs on why this, along with a clear strong public interest defence, would do the most to lessen the damage the laws are inflicting on free and open debate. A Bill without either reform would be a wasted opportunity. Please point your MP towards our briefing at this link when you write to them.

We’ve seen the best of democracy in action – we have forced libel reform onto the political agenda and when politicians have listened to us, we’ve seen the best improvements to the Defamation Bill. Please tell your MP not to support Garnier’s amendment and tell David Cameron and Nick Clegg that the Government should not do so either.
With very best wishes,
The English PEN campaigns team

Autism, Ethics and the Good Life: disorder or identity?

Sandy Starr is an adult who was diagnosed with Aspergers Syndrome in his teens. His work for the Progress Educational Trust, a registered charity that works in the field of genetics, assisted conception, embryo/stem cell research and related areas, includes the genetic aspects of autism. He addressed the question

Is autism a disorder? Is autism an identity?
Autism is a disorder with its roots in psychopathology.
The idea that autism is not a disorder is quite recent and seems to derive from three trends.
Expanding the range of what constitutes autism makes the concept of autism less coherent and less useful. This has happened with other psychiatric disorders as well.
Redefining normal has made us lose sight of what it means to be a functioning social being.
There is an assumption that identifying negative aspects of autism entails a moral judgement on the autistic person rather than a medical judgement.

 

Consequences
There have been changes to the law on disability rights and benefit entitlement.
People have been unfairly taken off benefits.
But broadly defined clinical categories are not trusted by government. We need to re-establish boundaries.
We need to defend the pejorative medical judgement that autism is a pathology with disabling aspects.
It is important to seperate moral and medical judgements. Ipseity is more than your health.
Mental health is part of ipseity.
Autism is part of mental health.
Autism exists as a medical condition.
Can it also be an identity.

 

Conclusion
Treating autism as a difference which is valued for itself leads to some interesting ramifications.
In particular should identity affect our judgement?
If I as an autistic person say something about autism should I be believed because of who I am?
That is a kind of ad hominem in reverse.
I deserve to be challenged on the strength of my ideas, not upon the strength of who I am.

In the discussion that followed I pointed out that some commentators had made moral judgements in the other direction. Barnbaum cites Hobson, who argues that without empathy one cannot be part of the moral community. Humanity is not about essential intrinsic qualities which we must possess. It is created out of our relationships with other people. We become persons when we recognize the personhood of others. If that ability is seriously impaired, as in autism, then that person cannot be considered to lead a fully human life.

Starr had an admirably pragmatic solution to the question. Once you are born you are part of the human race. No question about it. But this sidesteps the issue. What about those like Hobson who do question it? Perhaps people are asserting autism as identity in order to defend themselves against these pejorative moral judgements of autism?

I found his presentation stimulating and challenging. And Starr was right to ask whether, if he had not identified himself as autistic, it would have made a difference to how we received his arguments? Or as Murray might have put it, “What role had we individually and collectively assigned to Starr in the narratives of autism that were unfolding in the Royal Academy on World Autism Day?

Autism, Ethics and the Good Life: Narrative and Representation

Yesterday I described the introduction to a full day conference on Autism, Ethics and the Good Life. It was a very full day as the Conference Programme makes clear. So full that I am going to need a series of posts to even attempt to do justice to the richness of the arguments that were presented. So I am going to post individual blogs for each speaker and attempt a summary at the very end. Wish me luck. All these guys are so much wiser and smarter than me. Rather than sitting on the shoulders of giants I am hanging on to their coat tails.

Stuart Murray spoke after the break. He has an autistic son and has brought his own expertise as a professor of English Literature to bear on the question of autism. He spoke about the ways in which texts that purport to tell us about autism may also tell us about the people writing them. In my case I am writing up notes based upon the content of Murray’s talk, but framed by my previous reading of his book, Representing Autism: culture, narrative, fascination. (Liverpool University Press 2008)

Autism Narrative and Representation

Narratives do not just tell stories. We use them to interpret our experience. When we read other people’s narratives we should be aware of the interpretation that they are putting upon experience.

Narratives concerning autism are powerful and diverse.

Autobiographies by people like Temple Grandin and Donna Williams have a narrative that tells of triumph over the negative impact of autism while simultaneously celebrating autism’s positive impact on their ability to lead a good life.

But many narratives are written by people outside the spectrum and their assumptions deny the possibility that autistic people can lead a good life.

The Diagnostic and Statistical Manual of Mental Disorders (DSM) published by the American Psychiatric Association (APA) assumes that autism is a deviation from the norm (i.e. the medical definition of normality) and fits a deficit model. Autistic people are missing or  have malfunctioning versions of mental modules that are necessary to function as a normal human being. People using the DSM see what they are asked to look for. DSM criteria for developmental disorders are really ways of defining what a normal good life is in childhood by excluding those who fit the criteria from the good life.

There are other narratives in autism. Some of them are visual. fMRI scans are now de rigeur in most reports on autism research. They are pictures that speak to us in metaphors. Does this coloured section of the brain represent autism? fMRI scans suggest that we host autism in our brains. It is an internal feature. Brains are “hard-wired”  for autism in a cultural analogy with computer hard drives.

[And it is a simple matter to take the analogy as something real and imagine that our brains do work like computers, instead of realizing that computers are at best very limited attempts to emulate the working of our brains. Nevertheless the computational theory of mind exerts a powerful influence. See any book by Pinker or Dennett for examples of this particular narrative. ]

Moving away from machines, Murray considered the work of Simon Baron-Cohen. For SB-C  reaching a statistical cut off point for autism (e.g. his own autism quotient) is not sufficient for a diagnosis. Does one’s “autism” thus defined and delineated have a negative impact on  one’s ability to lead “the good life”? Can autism exist without suffering and disorder? Suffering is not mentioned in any of the diagnostic criteria but it is integral to our understanding.

Are there narratives about autistic people who do not suffer?  Can you be happy and autistic? And why should we pathologize autistic suffering? Suffering can be normal; e.g.  mourning our loved ones.  Is their unhappiness evidence of a disorder that we need to cure while our unhappiness is evidence of our humanity? That is some narrative!

Seeing autism as inherently disabling can seriously skew even scientific  narratives. Michelle Dawson has investigated the ways in which autistic abilities are described as side effects of impairments.

“while we know autistics process information atypically, very little thought has gone into how to fairly assess their abilities. In fact there is so little understanding of what autistics do well that their strong abilities are often regarded as dysfunctional. “

Some narratives are dangerous as well as misleading. Discussions of the relationship between criminality and autism ignore the fact that autistic people are more likely to be victims of crime. Rare but well publicized cases of autistics committing crimes reinforce the notion that autism=loner=psychopath. Murray finished with the narrative of Nicky Reilly, an autistic youth who was drawn to Islamic fundamentalism and injured himself (and nobody else) in a failed attempt to become a suicide bomber.

Murray ended by inviting us to draw our own conclusions from this particular narrative. My conclusion was that this kind of narrative invites us to believe that autistic people present a particular danger that precludes them from participating in the good life. Not only do they need protecting from themselves. But we also need protecting from them.

Narratives can be powerful and diverse. And some, like this one, can be dangerously wrong and need to be opposed.

Autism, Ethics and the Good Life: an introduction

Monday 2nd April was World Autism Day and to mark the occasion I attended a conference at the Royal Academy entitled Autism, Ethics and the Good Life. The conference was convened by Pat Walsh, Centre of Medical Law and Ethics, King’s College London and Professor Francesca Happé, Institute of Psychiatry, King’s College London, with support from the British Academy. The demand for places was such that the conference had to relocate from the British Academy to a larger venue at the Royal Academy. The programme was impressive. All of the sixteen speakers and chairs had a professional engagement with autism. Eight had a familial connection: five parents, one grandparent and two diagnosed with an autistic spectrum disorder. Additionally, one speaker declared herself to be the parent of a child with severe cognitive impairments.
Franscesca Happé is a professor of cognitive neuroscience. She delivered the opening lecture on the current state of the science of autism. The remarkable thing about her lecture was that she was able to give very few definitive answers. Despite the wealth of recent research most of her lecture could have been delivered relatively unaltered five or even ten years ago. Apart from mentioning her own interest in the fractionality of the triad, of which more later, this was a consensus report that few could argue with.

Diagnosis
Autism is diagnosed on the basis of observable behaviour but this behaviour changes over time and there are no cut off points. Behaviours are continuously distributed.
There are no biomedical diagnostic markers.
Boys are more likely to be affected than girls.
Clinicians can reliably distinguish Autistic Spectrum Disorder but this is not the case for subgroups within the spectrum.
Causes
There are no firm findings on environmental causes although prematurity, parental age and medication in pregnancy have been implicated.
Twin studies suggest that Autism is strongly genetic but the evidence for particular genes is not clear cut. Some genetic disorders are associated with autism; e.g. Fragile X and Tuberous Sclerosis. A number of genetic differences have been found in families with a history of autism. In families with no previous history of autism a variety of de novo mutations have also been found.
Happé did not have time to discuss this in great detail. I recommend the introduction to The Genetics of Autistic Spectrum Disorders on the NAS website by Bhismadev Chakrabarti of Reading University and the Autism Research Centre at Cambridge.
Outcomes
Very little is known about the effect of aging.
Outcomes are hard to predict because of the spontaneous improvement in symptoms that occurs over time.
Studies of outcomes for specific interventions are difficult to evaluate for the same reasons.
We know that education works but do not have random controlled trials to prove it.
Is normalization a valid aim? What if you take a happy, aloof child and raise their social awareness to a level that that exceeds their social competence, causing unhappiness. Is that a successful outcome?

With this last point Happé strayed beyond the state of science to the philosophical questions that ought to inform the science and did inform the rest of the conference. She concluded by inviting us to consider

Priorities for Research.
Genetic research takes the lion’s share of the funding because autism is seen as primarily a genetic disorder. Genetic research offers the prospect of finding the causes of autism and possible therapies or even a cure. A cure seems unlikely given the number of genes involved along with the complexities of gene/environment interaction. But the drive to discover reliable genetic markers for autism may lead to genetic counselling and screening, pre-implantation genetic diagnosis and the offer of abortion. Even if it does not come to that we need to discuss the ethical issues that such a possibility poses precisely because those are the same ethical issues that should inform our decisions about setting our priorities for research.

Tim Cadman, a psychologist with a PhD in Ethics took up the baton at this point with a lecture on ethical issues in autism. Rather than express a particular point of view, he delivered a survey of the issues to addressed by subsequent speakers and did an excellent job in my opinion. It certainly made the rest of the day easier to follow.

Reproductive Technology
Improvements in reproductive technology assist women in controlling their own fertility and enable parents to make informed choices to improve the well-being of their children, e.g. using preimplantation genetic diagnosis (PGD).
We are not yet in a position to offer genetic screening for autism but the issue has been raised and aroused objections from autistic people.
Does it imply  a value judgement on the quality of autistic lives?
Behavioural Interventions
These are powerful techniques that claim to make fundamental changes to people’s behaviour. But are those people, usually children, able to give consent?
Are the behaviours intrinsically wrong or do they speak more to society’s attitudes?
What if we are improving functioning at the expense of emotional well-being?
Medical and Social Models of Disability
Is Autism a disorder or a difference?
The medical model states that autism is inherently impairing and needs remediation.
The social model argues that impairment need not equal disability. Disability is imposed upon impairment by society.
Cadman suggested a more nuanced approach. Autism is a cluster of difficulties, not all of which require intervention.
Requirements for eye contact vary across cultures. It is not a problem in itself. But self harm does invite intervention.
What is a good life?
Defining a good life depends upon one’s theory of well-being.
Are there objective goods that apply to all?
Should we consider subjective goods in which on balance a person’s desires for a good life are met?
Objectively we might decide that someone did not enjoy a good life because they suffered from an intellectual impairment. We may consider their life impoverished by this but what if they are happy? Subjectively they enjoy a good life.
Looking at autism we may decide that social impairment affects well-being by making friendship difficult. But if a person does not seek friends is that a problem? Some autistic people do seek friendship but we should not confuse being alone with being lonely.
Research
Should we prioritize scientific research into causes that may assist future generations or does inter-generational justice demand that we fund interventions that will help autistic people now. (This relates to my previous post about priorities for autism expenditure and I am grateful to all the speakers at this conference who helped to clarify my thinking on the subject.)
One way forward is to democratize the process. Agreement may not be possible. These are complex issues with diverse opinions. All voices should be heard.

The discussion that followed focused mainly on the issues raised by Cadman. Happé was challenged on the validity of RCT trials in education by someone who thought that qualitative research was more important. She was also asked whether it was possible to separate the social and communication difficulties and quizzed about the third element in the triad – lack of imagination. Happé responded by reminding us that the original triad spoke of impairments in social understanding, social use of language and social use of imagination. It was possible to separate them but they were best understood in a social context. This reminded me of an observation by my son that he is only autistic around other people and not when he is on his own.
The discussion around Cadman’s presentation was very practical.

  • Whatever its merits or demerits, the medical model of disability did confer rights under the law.
  • Regarding inter-generational justice, research to establish more precise categories may lead to more precise interventions for existing autistics.
  • Even self harm has a social nexus. Under the social model external stress, not internal pathology, leads to self harm.
  • Should we even be discussing PGD if a genetic test is so unlikely? The response was “Yes” because the desire for a genetic test was driving research priorities and taking money from other potentially more productive areas, including questions raised by the social model.

All this (and more – my notes are incomplete) in the first ninety minutes before the coffee break! This was shaping up to be one of the most interesting autism conferences I had attended. And there were still six hours and ten more presentations to go. I will attempt to summarize the rest of the conference in my next post.  Rest assured. It did not disappoint.

What should our funding priorities be for autism?

The following poll has been posted on the UK Autism Linked In Group

At a time of limited public funding, what in your opinion is the most important area to tackle (I realise that it is important to do all these things, and I’m not advocating to drop any of them.

 

  • To research the causes of Autism.
  • To improve the diagnosis of Autism.
  • To offer support to people with ASD.
  • To offer support to parents.
  • To improve facilities in schools.

Despite the poll attracting very little attention I mention it because two of the comments express views that are widely held but rarely subject to scrutiny.

The first is that

Early intervention makes such a long term difference if provided in a timely and structured way.

It does not really matter which interventions we are talking about, although advocates for early intensive behavioural interventions consistently make this claim. They may be right but where is the evidence? Most studies concentrate on benefits to children compared to control groups that do not receive early intervention or else they compare benefits from differing versions of early intervention. There is very little research into adult outcomes and how they correlate to early intervention.

When Professor Patricia Howlin delivered the 2012 Centre for Research in Autism and Education (CRAE) Annual Lecture she cited figures from Shattuck et al (2012) that out of 11000 items of autism research published between 2000 and 2010 only twenty three pertained to adult interventions and services. The National Autistic Society campaign I Exist was precisely about the difficulties that adults encounter in accessing services they need in order to enjoy a full life. Our current campaign around implementation of the Autism Act is meant to ensure that local authorities meet their obligations under the Act to provide services for adults and do not use the current economic crisis as an excuse to do nothing or even cut back on existing services.

The second comment that

parents […] are most likely to be the key carer in any child’s life

is true for children. But children become adults and usually outlive their parents. Furthermore, those adults who are judged to lack capability to care for themselves are the responsibility of social services departments. Parents may still be heavily involved but they have no rights regarding the decisions taken on behalf of their adult offspring.

It is fair to debate whether parents or government agencies are best placed to identify the needs of adults, whatever the reason for their mental incapacity. But we will all be orphans one day. And so will our children. Sooner or later they are going to have to manage without us. Surely it is better to encourage that in our lifetime while we are still there to ease the transition.

Children have the right to an independent life. We have the right to enjoy the empty nest once our children have grown up. If that is not happening because of deficiencies in the system, those deficiencies will still be there when we are dead and gone.

So I voted to prioritize resources for adults. Not only do we owe it to the generations who have been under diagnosed and ill served up until now, such interventions have been shown to be cost effective. The National Audit office Report, Supporting People With Autism Through Adulthood found that identifying autistic adults and targeting services to meet their needs would actually result in a net saving by reducing the inefficient use of existing resources.

I am not advocating a pity party in which differing parts of the autism community vie for sympathy and support in order to maximize their share of the cake. We need a bigger cake and we need to challenge the assumptions of those who run the bakery. I question the predominant idea in autism that if we can fix the children it will be alright. The practical obstacles to finding a “fix” are enormous. And the ethical dimension has scarcely been considered, something I will begin to address in my next post. Meanwhile there is a lot we can do to fix society’s attitudes to autism and the social policy agenda that is causing needless harm and distress to vulnerable adults. Our children are tomorrow’s adults. So let us Act Now and Act Together for all their futures.