It is important that we all contribute to the UK Disability Survey if we possibly can. It seeks the views of disabled people, carers, parents or as someone with an interest in disability issues.
|Felicity Ellacombe writes ‘Lucinda and Gilbert are running for Fred in the Royal Parks Half Marathon on the 11th April. This will be the first fundraising event we have been able to hold for a year, due to Covid. Both of them will be running in their home areas instead of through the Parks. If you would like to support them here are the links.|
Our families have been having a tough time during the pandemic and sadly we have not been able to help them very much. Lucinda has described the problems very clearly in one of her recent posts.’
“Many autistic children keep their lives rigid and routine-led to help them feel in control of a world they do not understand. Families have suffered greatly during the pandemic because their autistic children/young people often with very little speech and learning disabilities do not understand why they cannot stick to the routines that help them feel safe. If you have complex autism – and will never understand what a virus is – you think it’s your mum, dad or caregiver stopping you doing all your usual activities. Can you imagine the impact of this on parents (the majority of them single) for months on end trying to cope with their children’s pain and lack of understanding every single day alone with no break – often sleep deprived?
Many neurotypical people will have mental health issues due to Covid but at least they know why it’s happening and what a virus is.
I will be thinking of a particular person as I run/walk/stagger. Many of you may have read about the despair of a friend Olga Voronina/Freeman who loved her autistic son SO dearly but was taken to the brink during Covid. I will be thinking of Olga, my Fred and all of the families who’ve suffered so much during Covid – and continue to do so. Every donation goes straight to the families via The Fred Foundation and nothing is swallowed up by admin costs. Not many charities can say that.” Lucinda x
You may be one of the people in isolation having to use Amazon to get things you need. It is annoying when you would rather support smaller companies. However, there is a way you can get Amazon to stump up some cash for your favourite charity. Amazon have come over all charitable and started something called Smile Amazon. Here is how it works.When you want to buy something via Amazon instead of going to their normal page amazon.co.uk – go to https://smile.amazon.co.uk or use the ink belowChoose your charity – The Fred Foundation – just type in that name and you are set up.
You shop as normal but Amazon will donate 0.5% of the net purchase price (excluding VAT, returns and shipping fees) of your eligible purchases, to the charity.You can choose to download a preference which will always open up Smile Amazon. This helps you to remember to use the correct page. It takes 2 minutes to set up and if you remember to shop this way we will get some money. We appreciate it is a tiny amount but if all our supporters do it we may get a significant amount, and we are such a small charity that any money is useful!It is about time Amazon gave something away so please do remember to switch.The Fred Foundation page on Smile Amazon
In light of all that’s going on around the world right now, a message to all of the parents and caregivers out there who have autistic children (or children with other special needs)…I see you
To all of you worrying about what to do tomorrow with no school, knowing how unsettling this complete break from routine can be, with no idea of when it might change again. Who know that their child just isn’t going to understand, and that the next few weeks and months are going to be full of meltdowns – I see you
To all of you whose kids schools are open tomorrow, who are being judged by others trying to figure out why your child gets to go to school and their’s doesn’t. Who are agonising over whether to send them, scared of the possible health risks, but trying to balance it with the health risks of being at home for an extended period – I see you
To all of you desperately searching online and in the shops for the few particular foods that your child eats, or trying to find the right nappies for your teenager, and are panicking as the shelves are empty – I see you
To all of you trying to figure out how you’re going to get your child to wash their hands as often as you’re being advised to, but whose child’s sensory system makes it incredibly difficult – I see you
To all of you worrying about what happens if your child gets the Coronavirus, knowing they won’t understand, and refuse to take any medicine. Who are scared of what might happen if they have to take them to hospital, and maybe even getting forcibly separated – I see you
To all of you who are petrified of what might happen if you catch it, if you get ill, if you have to isolate or end up in hospital, or even worse, die. Desperately worrying about who will look after your children and how they would cope without you – I see you.
To all of you trying to figure out how you get through the next few months with no school, no respite, and being a carer 24/7. Worried about the impact this time might have on your your kid’s mental and physical health, and your own mental health – I see you.
Know that you’re not alone. There’s thousands of families just like yours all over the world having these exact same thoughts.
Realising that, reaching out and speaking to others living similar lives will make this scary period that little bit easier. You’re not alone.
You’re stronger than you know and we’ll get through this… I see you ❤️
The road to hell for the mentally incapacitated
Rosa Monckton, right, who is fighting a legal battle to give parents more rights over the care of their disabled children once they reach adulthood, pictured with her daughter Domenica, who has Down’s syndrome.
Arguments are won by those who can speak. In arguments about mental health, a deep division is opening up between those who can speak for themselves and those whose disabilities silence them. There aren’t good or bad sides, and there are fewer ill intentions than in any other example of the needless infliction of misery I can think of. For all that, a largely unrecognised conflict of interests is raging, in which the weakest lose, as they do in every conflict.
On the one hand, we have the liberation of people suffering from periodic bursts of mental illness or mild conditions. I don’t wish to diminish them or say anything other than that their success in seeing their right to be treated as independent adults upheld has been one of the great social advances of the age.
Yet the language of liberation provides cover for the oppression of men and women with severe learning disabilities. It has become too easy to justify the neglect and abuse of those who cannot make informed choices. New taboos stand in their way. Polite society now insists that it is insulting to deny their voice, when in truth they have no voice, and patronising to say that their families know their interests better than they do, when often their families are their best and only friends.
And so at a time when hymns in praise of “neurodiversity”are being sung, we have the English courts allowing a 23-year-old autistic woman to be in effect pimped out by the state. A senior judge put a stop to it last autumn, and explained that numerous men she barely knew so exploited her that she faced a high risk of sexual abuse, injury or death. You may think that shocking, but by the standards of the day the authorities were behaving well. The woman offered her phone number to “any number” of men. Care workers said she did not always recognise the men when they arrived at her house and “they sometimes don’t recognise her”. Yet who were care workers to constrain her independence with “marginalising narratives that essentialise autistic subjectivities”, as one American academic researcher, who worked, inevitably in a cultural studies department, described decisions that overrode the wishes of a person with a learning disability. What right did they have to treat her as if she were somehow less privileged than so-called “normal” people?
‘The language of liberation provides cover for the oppression of men and women with severe learning disabilities. It has been too easy to justify the neglect and abuse of those who cannot make informed choices’
And so, at a time when awareness of mental health has never been higher, we find a father saying that his 17-year-old daughter was “falling apart in front of my eyes” after being kept for two years in a 10ft by 12ft hospital “seclusion room”. We find schools cleansing children with learning disabilities from their rolls. They can be noisy. They can be violent. They are hard to teach, and they pull the school down the exam league tables. Better to chuck them out, and to take the bet that their parents don’t have the money to go to court, and that the rest of society will forget its syrupy sentiments and turn away.
Everywhere you look in the welfare state, you see a bodyguard of political correctness covering the retreat from public provision. As resources are cut, the language so mellows that it dissolves neglect, like soft soap dissolving dirt, until we lose the ability to see it at all.
The public sector and serious media outlets would not now dream of using clearly insulting descriptions like “psycho” or “schizo”, “lunatic” or “nutter” to describe those suffering from mental illness. But the prohibitions do not stop there. Talk of “the mentally ill” or use “handicapped”, and you are guilty of reductionism. You are allowing the condition to swamp the rest of the individual. Use apparently neutral descriptions such as “those suffering from mental illness”, or say that “she is a victim of a learning disability” and you are not only a reductionist but patronising to boot. Don’t say “victim”, “the afflicted”, “a sufferer”, say guidelines issued by the Time for a Change campaign group. Why ever not? Because “many people with mental health problems live full lives and many also recover”. So they do, but many do not, and how should we speak of them?
I can denounce the prissy linguistic policing. I can say that euphemism conceals cruelty. However, unconstrained criticism misses the mark. The fact that I and millions of others don’t know whether to say “sufferer”, “victim”, “mental illness”, “mental handicap”, “learning disability” or “learning difficulty” is a sign of a revolution that has brought emancipation to those able to enjoy it. At least some people with autism have emerged from a world where they were ignored or despised to speak for themselves in the modern equivalent of the black civil rights movement. The comparison is not glib. Autistic people are one of the largest minorities in the world. There are as many people on the spectrum in the US as Jews. Rather than seeing them as victims or sufferers, rather than letting their condition be a burden, or continuing the apparently hopeless search for a cure, the world is being made to understand it is better to accept people for who they are and help them lead valuable and—more importantly—happy lives.
Search the Web and you can find lists of famous men and women who were autistic. Their obsessiveness and their ability to concentrate enabled them become scientists and intellectual pioneers. No autism and we would still be living in caves, runs a slogan that may not be wholly wrong. Turn on the news and you see 16-year-old Greta Thunberg explaining that being born on the autistic spectrum with Asperger’s syndrome was a “gift” that helped her face down leaders and force them to at least pretend to take man-made climate change seriously. “It makes me see things from outside the box,” she said. “I don’t easily fall for lies, I can see through things.”
Even today, one still stumbles on evangelical quacks boasting that they can cure homosexuality. Few believe they can, or that a cure would be worth having if they could. As with gay liberation, the growing acceptance of neurodiversity is proof that, despite it all, humanity can progress. Like anti-racist movements, or campaigns for gay or women’s equality, it takes people previously seen as inferior or otherwise unworthy of full citizenship, and it changes perceptions. The mentally handicapped are not handicapped at all, any more than the subject peoples of the European empires were inferior or women were disqualified by their nature from voting in elections or working in the professions.
Just as the straight white male has to accept his preconceptions are the problem, so the “normal” must accept that the chief handicap of the “handicapped” is the society in which they live. We want to “raise awareness amongst those who are not on the autistic spectrum so they do not see autistic people as requiring treatment, but as unique individuals,” say the organisers of Autism Pride Day. Proponents of “neurological pluralism” say we should accept difference and not seek to force people to change. Not that “we” can control or cure it. No one knows what causes autism, any more than they know what causes schizophrenia. This is why every variety of charlatan, from Freudians through to MMR conspiracy theorists, has claimed to be able to unlock autism’s secrets.
Leading the way for the Freudians was Melanie Klein, who decided in the last century on the basis of nothing but magical thinking that an autistic boy’s fascination with doors and door handles reflected his subconscious fascination with the penetration of a penis into his mother’s body. Leading the way for modern conspiracists is Andrew Wakefield, who, despite being struck off the medical register for misconduct and dishonesty, after fraudulently claiming a link between the MMR vaccine and autism, and despite opening the way for measles epidemics with his paranoid fantasies, has convincedmillions and, unsurprisingly, been received by Donald Trump. Frauds have exploited fear and ignorance. I suspect they will continue to do so, because there is no sign of evidence-based science stopping them with easy answers.
Molecular biologists have identified about 1,000 candidate genes and hundreds of de novo mutations associated with autism. Even the most common genetic factors are found in less than one per cent of cases. A review published in Nature concluded: “Most individuals with autism are probably genetically quite unique . . . If you had 100 kids with autism, you could have 100 different genetic causes.” So many contributing causes and triggers have been discussed, that Steve Silberman, in his wonderfully humane history of autism, Neuro Tribes, quotes the exasperated mother of an autistic boy posting a blog with the headline: “This Just In . . . Being Alive Linked to Autism.”
Like so many others, Silberman recommends that autism, dyslexia and attention-deficit hyperactivity disorder be regarded as naturally-occurring cognitive varieties that have contributed to the evolution of humanity. Both these statements are true. But here’s the rub.
The inspiring tales of Greta Thunberg, and of geeks on the spectrum making fortunes in Silicon Valley, are the stories of the few, not the many. The few who, whatever difficulties they face, can study, work, live, love and marry. In a melancholy piece that deserved more attention that it received, Jonathan Mitchell described in the Spectator how he had never had a girlfriend, could barely write or perform simple tasks, often caused offence, and had been fired from 20 jobs before giving up work at the age of 51. Others, as he was the first to admit, were in a far worse state than he was. They soiled themselves. They smashed up their homes. They couldn’t speak.
To him and them, the happy cries that autism was a gift not an affliction were almost insults. In his key passage Mitchell said of the leaders of the neurodiversity movement:
[They] claim to be autistic and to speak for others on the spectrum. They use what a friend of mine called “the royal we”. They state “we” don’t want to be cured—as if we all feel the same way . . . But in fact they are very different from the majority of autistics. Many of them have no overt disability whatsoever. Some of them are lawyers who have graduated from the best law schools in the United States. Others are college professors. Many of them never went through special education, as I did. A good number of them are married and have children. No wonder they don’t feel they need treatment . . . Those more severely impacted by autism are often not in a position to lobby.
They need others to lobby for them. But the modern state is unwilling to let parents lobby on behalf of their voiceless children. Its unwillingness sits too comfortably with the state’s overriding urge to cut public provision for those who need it.
A test case being decided as we go to press shows how deep the rot has set. It has earned attention because Rosa Monckton and Dominic Lawson are among the parents asking for the Mental Capacity Act to be clarified. Their daughter Domenica, 24, has Down’s syndrome. In her case and many other cases, Rosa Monckton said: “When assessments of their capacity and best interests for life-changing decisions are made, parents are unaware, not invited or even asked not to be in the same room.” Another mother described to the court how her son is non-verbal and has sensory and eating problems. He lives at home after failing to manage in residential care. Yet, because he is over 18, she has no legal right to take decisions on his behalf. As telling to my mind is the third couple bringing the case, who highlight a problem people do not like to talk about.
‘The modern state is unwilling to let parents lobby on behalf of their voiceless children. Its unwillingness sits too comfortably with the state’s overriding urge to cut public provision for those who need it’
As successive scandals have shown, the abuse of patients is widespread in residential care. Less often discussed is that withdrawn, violent and angry people, without the social skills to read and react to the clues of “normal” life, can be hard to care for. More often than not, only their families will do it.
The couple’s 22-year-old son suffers from severe learning difficulties, epilepsy and anaphylaxis. He is non-verbal, hyperactive, has no concept of danger and little understanding of the world around him. “Despite these very serious challenges, he continues to be brave, charismatic, endlessly patient and a huge giver of joy.” To his parents, perhaps, but not always to others. For, the parents continued:
With apparently little regard to their own care plans, and dismissing all offers to help in every possible way, we feel that attempts are being made to reduce his support to the point where he will be at huge risk. The decision-makers don’t know our son at all, in many cases have never met him, and our 22 years of experience and accumulated knowledge seem to count for very little.
One should be wary of trying to find signs of wider intellectual and cultural movements in judicial decisions. The law governing mental incapacity is a mess, and judges must struggle to make sense of it. On the one hand, the law recognises that people with a learning disability are truly disabled. They need others to make decisions for them on everything from the medication they take, the food they eat and the homes they live in. The Mental Capacity Act gives the courts the power to make a parent or guardian a “deputy” who can take decisions on their behalf. Yet the judiciary rarely obliges. The parents’ lawyers, led by the indefatigable solicitors at Irwin Mitchell, say disabled people’s families “naturally have their care and wellbeing at heart. Where they are willing and able to do so, they should take first place in the care and upbringing, not only of children, but of those whose needs, because of disability, extend far into adulthood.”
They are seeking to have the law clarified because courts have been reluctant in the extreme to grant parents that right.If we were truly becoming a more compassionate country, there would have been a scandal long ago. The record shows that the Court of Protection received 4,724 applications for a personal welfare deputy between 2008 and 2017 and 1,092 applications for hybrid deputyship, whose responsibilities cover welfare and finance. In all, the courts appointed just 2,127 welfare deputies and 338 hybrid deputies—a success rate for a welfare deputyship of 45 per cent and 30 per cent respectively.
The courts have had to deal with a code of practice tagged on to the law. Its author states that parents can only apply for rights to speak for their adult children in “particularly difficult cases” and when disagreements “cannot be resolved in any other way”. This tight instruction has naturally influenced judges.But that can’t be all. Refusing to allow parents to protect their adult children chimes with the spirit of the age. Lawyers tell me that it is commonplace to hear the authorities dismiss parents as overprotective and a threat to their children’s independence.
It’s not good enough for parents to argue that adult disabled children are making bad decisions. For all parents—or, at any rate, most parents—think their children make bad decisions: they fall in love with the wrong person, drop out of college when they should stay on, hang out with the wrong friends. It doesn’t matter if the parents are right and their daughter would have been happier if she had not gone off with a worthless man or son with a worthless woman. Adulthood is the freedom to make mistakes. How dare the patronising and paternalistic say those whom the politically incorrect label as “the disabled” should not enjoy the same freedom?
Except they are not free. When parents are frozen out, decisions are taken by social workers and local authorities who have been on the receiving end of vast cuts in central government support since the Conservatives came to power in 2010. Their overriding aim has to be to save money. They may not want to do it, but they have no choice.
That the consequences of austerity can be hidden beneath the robes of political correctness is an inevitable consequence of how we talk about mental health. The very notion of spectrums is unscientific. An autistic spectrum that can put a devastatingly effective environmental activist in the same category as a young man who can’t speak and is locked in a cell for most of his days is so broad as to be medically useless. In truth, it is worse than useless. It is dangerous. It allows neglect to pose as liberation and meanness to pose as kindness. If society wants to help people, it must be specific. Throwing around broad labels, lumping together people who have next to nothing in common, is a recipe for suffering.
The cliché that “the road to hell is paved with good intentions” is usually taken as a warning against unintended consequences. They are certainly on display when the well-intentioned speak of severely ill people as if they were victims of prejudice just waiting for the moment when liberal society shakes itself and appreciates their mathematical genius or coding skills. But the Cistercian abbot Saint Bernard of Clairvaux (1090-1153), who supposedly came close to coining the phrase, can’t have meant that. Medieval theologians believed in good intentions, after all. His admirers reported him as saying “l’enfer est plein de bonnes volontés ou désirs”. (Hell is full of good intentions or wishes.) The faithful would have understood him to mean good intentions are not good enough: you must act on them.
If Britain wants to act on its good intentions, it will accept that parents in most cases must have a say in the treatment of children who are adults in age only, and that the under-funding of mental health services is a disgrace. Until it does, tens of thousands of our fellow citizens will continue to live in the neuro-diverse, politically-correct version of hell we have built for them.
By Melissa Collins-Porter
For this year’s autism awareness month, I’d like to honor and celebrate the siblings. They love their brothers or sisters fiercely, yet quietly endure being dragged to therapists’ offices and doctor appointments and get used to only Mom or Dad coming to their events because one has to stay with their sibling. They often are forced to concentrate on homework amidst what reasonable people would call total chaos. From a young age, they have an awareness that at some point, they will likely become caregivers to their sibling. They may feel guilt about the fullness of their own lives (friends, sports, activities, travel, independence, college) in contrast to that of their sibling. They may feel pressure to be “the quiet one,” “the good one,” “the easy one.” They have become used to cancelled plans, destroyed or lost personal items, and giving up their own preferences to appease their brother or sister. They tirelessly stand up for their siblings when people ask questions, stare, or use “autistic” as a pejorative at school. Underestimate them at your peril, because they grow up to be extraordinary adults and you want them on your side. This one right here is my hero.
The writer is a filmmaker who lives in Southern California.