The boy whose brain could unlock autism

The boy whose brain could unlock autism

This is just incredible:

“We had 70 years of autism research [based] on the notion that autistic people have brain deficits. Instead, the intense world postulates that autistic people feel too much and sense too much. That’s valuable, because I think the deficit model did tremendous injury to autistic people and their families, and also misled science.”

[...]

That’s the paradox about autism and empathy. The problem may not be that autistic people can’t understand typical people’s points of view—but that typical people can’t imagine autism.

Rupert’s red top: the rise and fall of Rebekah Brooks

Rupert’s red top: the rise and fall of Rebekah Brooks

Peter Jukes, the live-tweeter extraordinaire of the hacking trial, has written an article for the New Statesman focusing on Rebekah Brooks. Jukes’ tweeting was engaging and brilliant, and for the first time this article starts to reveal the “behind the scenes” he focuses on in his new book, Beyond Contempt: The Inside Story of the Phone Hacking Trial.

It’s well worth reading. I think the book will be too.

Kara Swisher Is Silicon Valley’s Most Feared and Well-Liked Journalist. How Does That Work?

Kara Swisher Is Silicon Valley’s Most Feared and Well-Liked Journalist. How Does That Work?

There’s a lot of PR-masquerading-as-news and total fluff that comes with the Silicon Valley press, and most of the time it’s hard to even see the relevance of it unless you’re in the middle of that ecosystem. But Kara Swisher is one of the greats.

Something’s Got to Give

Something’s Got To Give

A timeless article by Darcy Frey in the New York Times Magazine (1996), after he spent five months working with air traffic controllers in Long Island.

That’s O.K., the controller assures himself, he has what they call “the picture” — a mental strategy to avoid conflicts — and despite the quickening traffic, he’s commanding the pilots with rhythmic ease: “Newark jets maintain 2,500 feet. . . . Teterboro props descend to 1,500. . . . La Guardia planes climb to 6,000. . . . “

Then, for an instant, his mind wanders — don’t forget to pick up milk on the way home — and suddenly he looks back at the scope and it’s gone: no picture, no pattern, just a mad spray of blips (and more blips now than there were five seconds ago) heading — where? North or south? Climbing or descending? He can’t remember, and though he tries to catch up, he’s already behind, conflicts arising faster than he can react — one here, one there — jets streaking across the sky at 300 miles an hour, the controller’s stomach in knots because he knows he’s going down, nothing to do but leap from his chair, rip off his headset and yell to his supervisor, “Get me out of here — I’m losing it!”

Using the Sale of Goods Act against technology companies

I really like Apple products, they’re just expensive! The amount you pay for a new MacBook, iPad or iMac is a painful amount out of the wallet, and has always necessitated months, if not more often years, of saving. Like any technology products, they break, and in the last 6 months I’ve managed to use consumer law – with very little effort – to have two iPhones replaced and an expensive iMac repaired.

This strategy works with any expensive product you’ve got – if it’s worth an hour of your time to try and get a replacement or repair, it might be worth following these steps. (I’ve also included some specific guidance relating to claiming on Apple products.)

The relevant law

You need to claim against the retailer you bought the item from. Again, you’ll need proof of purchase, but the relevant legislation is the Sale of Goods Act 1979.

Under the Sale of Goods Act 1979, goods must:

  1. Be of satisfactory quality.
  2. Be fit for purpose.
  3. Be as described.
  4. Last for a reasonable length of time.

So how do you use this? If you’ve bought an item and it needs a replacement or repair, first write to the retailer asking for a repair or replacement due to a fault. Most of the time, they’ll refuse: just write to the retailer setting out your rights under the Sale of Goods Act. If that doesn’t work, threaten to take them to Small Claims Court (which costs less than £100, and they have to pay your fees when you win!)

Getting a mobile phone replacement on a contract

The iPhone was on contract with O2, ~13 months into a 2 year contract. This might be different now O2 Refresh is in play (a scheme that allows you to replace your phone with a new model without upgrading your contract), but O2’s standard consumer and business iPhone contracts last for 18+ months (normally 24), whereas the actual phone is only guaranteed against repairs for the first year.

Being quite a large company, O2 know all about the Sale of Goods Act – even if they try and pretend they don’t. This was my original exchange with O2’s live chat:

James Inman: I have spoken to someone on the phone at O2 this morning who said there is nothing you can do because there is only a 1 year warranty, however, under the Sale of Goods act goods must be fit for purpose – which in this case is providing a phone on a 2 year contract that works for 2 years.
James Inman: Under the Sale of Goods Act 1979, as a seller, O2 should ensure that the goods are of a satisfactory quality and last for a reasonable length of time.
James Inman: You have sold a phone on a 2 year contract that has not lasted 2 years.
O2: Sabi: I’m sorry James, I’ll have to stick to the replacement process we have in place
O2: Sabi: I won’t be able to take any exceptions on this
James Inman: Please transfer me to your supervisor.
O2: Ken – Supervisor: Hello James. As per our terms and conditions we offer only 1 year warranty on iPhone.

Safe to say, I wasn’t getting anywhere with their live chat, and this was just a waste of time! I then drafted a two paragraph emailed to O2 setting out my 4 rights under the Sale of Goods Act and stating that a reasonable length of time for an expensive phone to last was not 13 months – and that I would happily take them to Small Claims Court if they didn’t agree to replace the telephone.

Within an hour, I’d received a telephone call from O2 telling me they’d sent out a replacement iPhone!

What’s different with Apple?

If you’re dealing with products Apple have sold (through a retail store or online), or Apple products you’ve bought from elsewhere, you can call and ask AppleCare – whether you have AppleCare or not – for an “EU Consumer Law Claim Form”. They’ll fill this out for you, and tell you whether they’ll repair your product or not. From what I’ve heard, this will work for up to 6 years after the date of purchase, as long as there’s no accidental damage on the product you need repairing.

This route seems to be open with Apple as they spent so long not abiding by EU law and insisting you needed to purchase AppleCare for repairs! Apple’s information on the “statutory warranty” is here. Unless you have your proof of purchase, Apple don’t have to bite on this, but if you’ve bought something from the Apple Web Store, even on a previous Apple ID years ago, they can dig out the invoice by product serial number.

This seems to work best when you take a product into the Genius Bar or an Apple Authorised Service Provider: AASPs have a system that fills this form out and automatically sends it off to Apple if you request – and the Genius Bar can make decisions in-store. You can always try the Sale of Goods Act route with Apple if this doesn’t work, too.

Good luck!

Do you really want your medical data made available to anyone?

The idea of data sharing in the NHS terrifies many people, but not me. I see many practical uses that haven’t been fully exploited: I’d like to be able to walk into an out-of-hours GP surgery or an A+E department, give them my name and date of birth, and have my full medical records in front of the doctor.

What I expressly don’t want is for anyone to be able to access my personal medical information, including the conversations I’ve had with my doctors and consultants. I don’t mind fully anonymised data being made available to medical researchers, but I do mind when it’s identifiable information. Likewise, I’d never dream of letting private companies near my medical records.

Unfortunately, this is just what’s about to happen.

From a recent article in The Independent, on care.data:

From spring this year, every GP surgery in England must begin sending patient information to a central NHS database. The data trawl, which has been given the equally innocuous title care.data, is being hailed as a revolution in the use of information to plan and improve our healthcare – a project which has been personally spearheaded by Health Secretary Jeremy Hunt.

But it has also been condemned as a government-backed intrusion into our privacy on an unprecedented scale. For the first time, information about the private things we discuss with our GP will be – with some exceptions – held in a national database, alongside our NHS number, date of birth, postcode and gender.

Even more worryingly for some campaigners, the data may in future be made available to non-NHS researchers including private health companies – albeit in a “pseudonymised” format.

Why is it right to be concerned?

The notification process is shoddy. There’s no guarantee you’ll get to see the NHS England leaflet that’s being sent out: although they’re supposedly being sent to every household, they’ll be a standard “To The Occupier” – so you might throw it away as junk mail – or someone else in your house might.

care.data isn’t the same as the Summary Care Record, which will share information on your allergies, medicines and other emergency treatment, and make it available for A+E departments and out of hours services. Mostly importantly, the information on care.data can be used other than for your medical care – which is something the Summary Care Record doesn’t allow. I’m not comfortable sharing my medical data with anyone except the doctors and nurses treating me.

Is it really anonymised?

The idea that your “NHS number, date of birth, postcode and gender” will mean you can’t be identified if someone knows what they’re looking for simply isn’t correct. Anyone with access to this database – which eventually, could be a wide range of people – will be able to find who you are based on searching the electoral roll.

How do I opt out?

The following suggested letter, based on one provided by care-data.info, is an easy opt-out. Just send it to your GP’s surgery with your name, address and date of birth. I have included a penultimate paragraph, stating that this does not apply to the Summary Care Record – but you can remove this if you don’t want your records on that either.

Dear Doctor,

I am writing to give notice that I refuse consent for my identifiable information to be transferred from your practice systems for any purpose other than my medical care.

Please take whatever steps necessary to ensure my confidential personal information is not uploaded and record my dissent by whatever means possible.

This includes adding the ‘Dissent from secondary use of GP patient identifiable data’ code (Read v2: 9Nu0 or CVT3: XaZ89) to my record as well as the ‘Dissent from disclosure of personal confidential data by Health and Social Care Information Centre’ code (Read v2: 9Nu4 or CTV3: XaaVL).

For the avoidance of doubt, this request relates to the scheme known as “care.data”. I would like you to make my medical information available to other healthcare professionals as part of the “Summary Care Record” and associated systems.

I understand this request will not affect the care I receive and will notify you should I change my mind.

Yours sincerely,

YOUR NAME
YOUR DATE OF BIRTH

You can also download a Word document version of the letter.

At this moment in time I’m struggling to see any negative effects from opting out. At the very least, just until the intentions of the system have become clear, I’d urge you to do so.

An introduction to SEN law

The definition of “special educational need” and “learning difficulty”

A child has special education needs, under the 1996 Education Act, if they have a learning difficulty (s. 1) which calls for special educational provision to be made for them. A learning difficulty (s. 2) is when a child has a significantly greater difficulty in learning than the majority of children of their age, can’t make use of the standard educational facilities for children of their age, or would have the above but is under compulsory school age.

What support is available for children with SEN?

A child can either not be on the school’s special educational needs register or be receiving help informally, but it is good practice for schools who have concerns about children with SEN to adopt either the levels “School Action” or “School Action +” (SA and SA+ respectively.) SA+ is normally triggered when an outside agency, such as an educational psychologist or CAMHS (Child and Adolescent Mental Health Services) becomes involved.

Importantly, SA and SA+ do not require a school to give any particular help to a child with SEN. The SEN Code of Practice, which is not a legally binding document but should be taken into account, recommends that schools put together an Individual Education Plan (IEP) for a child with SEN. This should include details of what extra help is being given and what targets the child should achieve in the short-term, as well as a date of review.

The only way in which a Local Authority (and therefore a school) can be legally made to provide support for a child with SEN is through a Statement of Special Educational Needs.

What is a statement of special educational needs?

This is divided into 6 parts:

Part 1: The child’s personal details and a list of reports used to compile the statement.
Part 2: A detailed description of all the child’s special educational needs.
Part 3: The support (special educational provision) that will be provided to the child.
Part 4: The school or type of school the child will attend.
Part 5: Any non-educational, including medical, needs.
Part 6: Any support required for the non-educational needs which will not be provided by the Local Authority.

Only parts 2, 3 and 4 are binding on the Local Authority, so it is very important for parents to get them right. Statements are reviewed once a year, and it is not uncommon for Local Authorities to either refuse to issue statements, to write them but miss out (whether accidentally or intentionally) the child’s needs or the provision that needs to be made, or to amend them at annual review.

An assessment of the child’s needs must be carried out by the Local Authority (normally by an educational psychologist) before a statement can be written. This takes place under s. 323 Education Act 1996 and is known as a “statutory assessment”. Local Authorities can also refuse to do this assessment following a request from a parent, which is known as a “refusal to assess” and comes before the statementing process can begin.

A statement takes place under s. 324 Education Act 1996, and the various rights of appeal are set out in ss. 325-326 and 328A.

How does an appeal work?

A parent or guardian of a child can appeal against any of the following:

  • The Local Authority decides not to do a statutory assessment of the child’s needs (refusal to assess).
  • Following a statutory assessment, the Local Authority refuses to issue a statement (refusal to statement).
  • The Local Authority issues a statement but there is a disagreement with any/all of Parts 2, 3 and 4 (P234 appeal).
  • The Local Authority amends a statement following an annual review (P234 appeal).
  • The Local Authority stops the statement following an annual review (cease to maintain).

The appeal is to the First-Tier Tribunal (Special Educational Needs and Disability), or SENDIST. SENDIST give both the Local Authority and the parents the ability to submit evidence and then call a hearing, where the parents and the Local Authority must present their case. The Tribunal is then able to decide on whether the Local Authority is correct or not, and can order them to reverse their decision.

What is changing?

The Children and Families Bill, currently going through Parliament, makes provision for Education, Health and Care (EHC) plans. This is a great idea that should remove the disparity between education, health and social care – but at the moment, there are a lot of issues with it that will make things worse for children with special educational needs and their families, not better. Thankfully, at the moment, consultations and select committees are ongoing.

Thoughts on Lucy Meadows

I think by now, everyone knows the story. Lucy Meadows, a transgender teacher, killed herself this week. There have been many words written about why – a lot of that blame at the door of Richard Littlejohn, who wrote a scathing and hurtful article, entitled “He’s not only in the wrong body… he’s in the wrong job”. In Littlejohn’s standard style, there is a tone of disbelief and sarcasm used to mask comments that are discriminatory – and wrong.

I’m not going to lie. The Daily Mail still turns up on my kitchen table every day, and I try and read it, every day. Sometimes (as much as I hate to admit it), Littlejohn makes me laugh, but more often, he makes me angry. I despair at the world when I read his columns, twice a week, because I know how many people think just like he does.

I have a fundamental belief that the press should be free to express an opinion, however damaging that opinion is. That belief is in what is often mistakenly attributed to Voltaire, a simple phrase: “I disapprove of what you say, but I will defend to the death your right to say it.” However, much has been spoken of how Littlejohn’s column specifically, and the press as a whole, participated in a “monstering” of Lucy Meadows, and that is something quite different.

You only need to look at the incomparable David Allen Green’s resource page on Lucy Meadows to see that Lucy Meadows’ initial transition got tabloid press coverage. Leveson and privacy arguments be damned, there is no reason for a teacher, who wants to make a transition from one sex to the other, to be entirely savaged by the press upon doing so. As much as I am excited and relieved to see the progress on equal marriage we are making as a society, it seems to be an acceptable position to be transphobic, and that shames our society. (I still remember reading the story of Kate Craig-Wood as a personal inspiration.)

There is, at this moment in time, and in all fairness, no evidence that Littlejohn – or indeed any other journalist – made (or contributed to) Lucy Meadows kill herself, which is why I feel that the “fire Richard Littlejohn” petitions are wide of the mark. He was simply the better known of the columnists to savage her. As for the press pack that were camped outside the school and Miss Meadows’ home, I feel they are the lowest of the low. But despite our best efforts, I’m not sure we can change any of this.

It’s important to remember, alongside all the fury, that a committed teacher who just longed to be herself has lost her life. Our fury, for now, would be better chanelled at raising awareness of trans* issues – @TransMediaWatch are doing a great job here – and trying to ensure that everyone who needs it has the right support.

The Daily Mail will never fire Richard Littlejohn. Stop wasting your time. Instead, if you’re in that position, ever, The Samaritans or any number of other organisations can help. If you’re lucky enough not to be, let’s stand together and fight for better mental health care, press freedom that doesn’t destroy lives, and people like Lucy Meadows.