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Autism Awareness Month

Autism Awareness Month is of passing interest to people who are not involved with autism on a daily basis. For those of us who have a close family member with the condition, we don’t have ‘autism month’ – we have autism day after day after day, month after month, year after year.

However, autism month does at least give us the chance to share our thoughts with the hope that people might be slightly more willing to listen – not just to sympathise but really understand.

Autism is a spectrum and people diagnosed as autistic can be almost anywhere on it. They can be highly skilled, or unable to function in nerotypical surroundings. They can be apparently easy to deal with, simply seeming to be reserved or cold, or they can have all the social problems of a toddler with uncontrollable tantrums. They can be anywhere between all these, or different again. The media don’t understand and just lump them all together. People with physical conditions such as blindness, deafness or paraplegia are not lumped together in quite the same way. (Governments manage it, but only in terms of costs and benefits.) Most people, even journalists, can see the different problems and needs when it comes to physical problems.

My grandson is autistic. He also has ADHD and high anxiety levels. He is, into the bargain, gifted across all subjects other than personal and social education, and team games. He is nine years old. He has the academic skills of a teenager (and some of the knowledge) and the social skills of a four year old. He was diagnosed at the age of five, when it became obvious that his progress in mainstream school was causing difficulties for everybody, he has an EHCP (these replaced the old ‘statements of special educational need’ and cover health as well as education) and he has medication, prescribed and monitored by a psychiatrist, to calm his anxiety and help him concentrate.

He is gorgeous. Really interesting to talk to, charming most of the time, imaginative and caring. He finds it hard to understand sarcasm, satire, and hidden agendas. He is truthful, and expects the same of others. He loves animals, sport, computers and books. He has friends and enjoys outings to the park or the swimming pool. He is easily upset and has occasional panic attacks and meltdowns, more often at school than at home. He is aware of his condition, approves of his medication, and finds his psychiatrists ‘interesting’.

For the last twelve months he has been receiving only part time education. When he has a meltdown he is taken out of the classroom by his teaching assistant (full time funded by the EHCP) and kept in a ‘calm room’ where he is given a choice of educational activities on an iPad. He is allowed to choose whether or not he goes back to class. (Guess what he chooses!) In any case, he does not attend school in the afternoons, he is not permitted to join the class for things like swimming, and until recently he often missed playtime (until his meds were increased). The school have tried really hard to cope but nobody on the staff has specialist training or knowledge, and the only advice they have comes from a special school for autistic children with low academic ability. (They told them to reduce pressure at all costs.) Parents and grandparents are, of course, not regarded as experts.

The local authority have been trying to find a placement. We, as a family, rejected the offer of a place at the school for low ability children. He would be just as isolated there, and with even less chance of studying to higher levels with anything resembling a peer group or adequate science facilities.

Now, at last, there is good news. A school run by a private trust, for children with challenging behaviour, has opened just a few miles away and he has been offered a place (after two interviews and a lot of to-ing and fro-ing of files). It sounds ideal – its sister schools in other parts of the country are good – and it will take him right through to GCSE in the core subjects so he will be able to avoid the trauma of transfer to a secondary school that would almost certainly be even less able to cater for his needs than his primary school.

For him, for us, and for the primary teachers who tried and failed, this is excellent news but it makes me think hard about the way we provide for children like him.

The local authorities in UK have had to close many special schools. This has been basically a cost cutting exercise although there is an attempt to pass it off as ‘inclusivity’, good for both children with special needs who will feel included, and ‘normal’ children who will mix with children with different needs. Frankly, I don’t think my grandson was ‘included’ at any stage and I’m fairly sure this is the case for a lot of children with his problems. The cost cutting has not resulted in extra money going into classroom provision for children like him or into extra staffing and staff training. It has merely allowed local authorities to keep up with rising costs. It has done nothing to educate either the teaching force or the media.

It all strikes me as very similar to the much vaunted ‘care in the community’ for adults with mental health problems. People with widely differing needs are abandoned to social services that are already stretched to capacity.

It is possible to extrapolate wildly from the arguments for inclusivity or community care. We could suggest that intensive care patients could be nursed at home or that patients from e.g. Broadmoor could live in locally managed sheltered housing. These are extreme examples, of course, but nobody would dream of suggesting they should be tried. But there are many people who fall between these extremes and the commonly held image of ‘special need’. The problem is that until someone is in really dire physical or mental straits it is considered reasonable to try to accommodate them in facilities that are designed for the average person, child or adult. When this doesn’t work, there is panic as officialdom tries to find placements that do not exist within public provision.

So what happens? Private companies move into the gap in the market. Some of them, including the trust that runs the schools I have already mentioned, do an extremely good job and we can only be grateful to them. The same applies to private medical facilities that help the NHS to cope. But the fact remains that they are private, that they make a profit, and that that profit comes from the taxpayer. The local authority are funding my grandson’s place at the special school and are paying fees similar to those paid to private schools, from our tax.

I am grateful to them. I am grateful to the school, simply for existing, for providing something that is not available in ‘mainstream’ provision.

I still think the philosophy and policies that have brought about this state of affairs are morally wrong.

My grandson looks ‘normal’. Until you watch his behaviour or listen to him, you have no idea there is anything unusual about him. He is extremely intelligent, articulate, nice looking and physically graceful so he doesn’t quite fit the usual ‘special needs’ definition. He is also in extreme need – need of somewhere that can deal with his challenging behaviour at the same time as stretching his mental skills, and somewhere that does not simply put him in an isolation room with an iPad, reducing his wish to learn and his will to succeed.

Research is still ongoing and expert opinions and knowledge about autism are in flux. There are some brilliant psychiatrists doing their best to find out more, and to explain their findings, but the knowledge trickles down very slowly to the grass roots of teachers or even educational psychologists. It takes even longer to reach the media, the general public and the politicians. Fifty years ago, my grandson would either have been punished into some kind of submission for his expressions of his anxiety, or would have ended up alienated from the school system and possibly from society. We can only be glad that this is no longer the case.

He, and others like him, have a great deal to contribute. I can foresee him in some kind of IT work, helping to shape and maintain the future for all of us. I know of similar children who excel at the arts – music, in one case, drama in another. These are by no means the ‘idiot savants’ so beloved of media stories. They are highly intelligent young people who simply cannot function in a class of thirty mixed ability pupils with just one teacher but who can be helped to interact with society, given patient tutors and calm surroundings.

As I said, autistic people are as different from each other as they are from neurotypicals, but there are a lot of them, all with very special needs, and it seems only the private-for-profit sector is prepared to meet these.

If a month devoted to autism helps to educate people about these needs, then it will be welcome. But at the end of the month, children like my grandson will still be with us, needing to learn, needing to socialise, and most of all needing to be understood and loved.

Autism is a spectrum. Yes, I’m repeating myself but it bears repetition. People with the condition can be almost anywhere on the spectrum. We need to get this across to the public at large. Now.

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Posted by on April 5, 2017 in personal, protest

 

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Brexit

I haven’t said much about Brexit, on any of my social media platforms, though I’ve reposted things on FB. However, today made me feel I should make my feelings very clear, if only for the sake of showing solidarity with others I know who feel likewise.

I am personally distressed by the idea of leaving Europe. I have always felt European first, Brit second and English trailing last. My family were proud of their connections with Scotland, Ireland and France. My husband’s mother was German. We own a house in Portugal. We have close friends (and some family) in Germany, France, Spain and Portugal. Needless to say I voted to join the EU in the first place and thought that the membership would be forever.

As well as my personal feelings I believe that a strong EU is our best defence against the threats of political movements such as neo-fascism and the safest way for our industries (such as they still are) to prosper. There are other important considerations like pan-European research projects which affect industry, universities and medical advances. The EU has helped us to make huge strides in areas like the environment, protection for women, for workers, etc. Whilst there is some vague reassurance that laws will simply be re-enacted so that they are Brit laws instead of EU ones, there has to be some doubt, too. Even though Britain helped to develop the European Human Rights Act it had to be dragged kicking and screaming through the courts to keep some of the provisions.

Brexit made me cry, on and off, for about a month. I am personally afraid for more than just my feelings of being European. I am worried about our second home, about the stuff we invariably cart to and fro ranging from wine and oranges from Portugal to marmite and cheddar cheese from UK. I am worried about our Portuguese bank account. I am worried about our Portuguese car, about the rates on our house, about the cost of travel to and fro, of insurance, and about medical reciprocity between here and there. I can’t make any plans or decisions because it will take two years (at least) before we know the details of the break-up.

But this is pure selfishness compared with the situation facing some of my friends. Some examples:

*how will this affect someone with a UK passport living in Germany with a German partner, children and grandchildren? And the woman in The Netherlands who is divorced but works there full time and has two children in higher education?

*how will this affect people with businesses in Europe – things they invested in in good faith whilst retaining their UK passports? One lot are both Brit, another is half Brit and half Maltese. How can they plan their businesses sensibly?

*what happens to couples of mixed nationality – a Brit guy with a Belgian partner living in Portugal and working in both Portugal and Belgium?

*how does someone involved in research at a UK uni seek either European co-operation or funding, or for that matter offers of career advancement if they aren’t UK passport holders?

*what happens to the European guy brought over here to work by his firm – in good faith on everyone’s part – who uprooted his family and settled here – when he is asked to leave, or when his firm gives up and leaves, uprooting him again?

They aren’t all retirees sunning themselves on the Costa del Sol, but even if they were, they went there in good faith (one such couple I know are retired after a lifetime of service in the RAF) and now their pensions, their healthcare, their property rights etc. are all at risk.

All the above are very real people and are my friends – people who really matter to me.

Then there are the Leave voters who tell us it will all be all right in the end. And accuse us of being Remoaners. Even, in once case, telling us we should remove ourselves to Portugal and not return. Goodness knows what they’re saying to my friends who are not UK passport holders.

Today saw two last straws.

First of all, there was a campaign leaflet through the door for the Greater Manchester mayoral election. Not related to Brexit? Bear with me.

We were asked, some time ago, to vote on whether the ‘satellite’ boroughs around Manchester should be more closely connected with Manchester city, with a mayor. The consultation and vote were expensive (paid for by our local taxes). All the boroughs, Trafford, Stockport, Wigan, Oldham, Bury, Tameside, etc. etc. with a variety of political leaders heading their councils and some wildly varying styles, campaigned and the vote was overwhelmingly against the whole idea. A resounding NO. We celebrated, right and left alike. Nobody wanted closer contact with Manchester city which has very little in common with the outlying towns. We did not want the expense of another tier of government, especially one so diluted and so difficult to tailor to fit all. The government shrugged and said that our expensive vote was not binding and they would go ahead anyway. After a democratic vote the ‘will of the people’ was completely discounted and we are now having an expensive campaign (paid for by our local taxes) for a mayor nobody wants at all. The front runners appear to be a right wing councillor who might, for all I know, be fine in his borough but has no connection with ours, and a left wing politician who is ambitious but not particularly connected with Manchester at all.

So I am pretty cynical about anything that involves ‘the will of the people’. Politicians of every hue will carry on with their own agenda regardless. It’s very nice for them and for their supportive media, if a popular vote happens to coincide with that.

Which brings me to the media. I have been shocked by the politics of hate promulgated by some of our press and have joined the Stop Funding Hate campaign. I am quite certain the constant diatribes of some newspapers contributed to a great deal of hate crime and the death of Jo Cox. I have just been shopping and looked at the headlines on display as I left the supermarket.

I think the Daily Fail surpassed itself and its headline encapsulated a great deal of what is wrong.

In response to Ms Sturgeon’s application to hold a second Scottish referendum the Fail says:

Keep your hands off our Brexit, Nicola.

You mean we aren’t dragging Scotland along with us into this mess?? And Ireland? And the rest of Europe? And people who couldn’t vote because they didn’t have UK passports or had lived outside UK too long?

Our Brexit? Not mine. I am ashamed of my country.

 
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Posted by on March 14, 2017 in personal, protest

 

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And more fighting back…

Gaudi windows

I helped crowd source a video that has just gone online – too late to get into my earlier post. Again, take, share, etc. I am proud that my name appears in the list of contributors even though my contribution was tiny.

https://www.laquadrature.net/en/video-reclaim-our-privacy

The glorious windows, by the way, are by Gaudi and are in Barcelona.

 

 
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Posted by on February 11, 2014 in protest

 

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THE DAY WE FIGHT BACK

Like many people I am incensed about the government spying that US and UK are colluding in. Today has been declared The Day We Fight Back and members of various parties and organisations have been asked to share banners on their websites, blogs, etc. So here are three from me.

day we fight back resized

eff fightback

no surveillance resized

Feel ree to take, share, and spread the word.

 
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Posted by on February 11, 2014 in protest

 

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SOPA, PIPA… and ACTA

I am very pleased about the mass protest that has stopped SOPA and PIPA for the time being. I am horrified at the way the mass entertainment industry has taken upon itself the role of policing the public outside as well as inside the USA.

They claim to be fighting piracy but I beg to differ. Piracy (which is to be deplored) is the use of someone else’s work without consent for profit, either not sharing that profit with the originator or seriously decreasing the originator’s chances of making a profit.

Sites that provide downloads of films, music, and books without consent,for payment, are piracy and of course should be prevented from operating. However, karaoke sessions, remix vids on YouTube, fanfiction, reviews that quote/illustrate, etc. etc. are not piracy. In fact, they often act as free advertising for the original works.

Some free downloads of films etc. are piracy but others are a desperate attempt to share with the world the work of actors, singers etc. whose films/TV shows/music have been published solely in the USA and are otherwise inaccessible to the rest of us. In a sense it is the American entertainment industry who are the pirates because they steal the creations of artists in all genres, not rewarding them sufficiently and not allowing global disribution of their work.

SOPA and PIPA are not the way to fight internet piracy. They are, it seems, the way to get a large proportion of the world very incensed indeed! Including me. I have signed various petitions, donated to more than one organisation, talked to anyone who would listen and followed the debates, official and unofficial, closely.

I am also concerned at the closing down of Megaupload and the implications of that, and the current attempt to extradite Richard Dwyer from the UK because of actions he took solely in the UK. More reading, petitioning etc.

I am not, at present, in favour of Black March. In its present form I think the idea could hit a number of independent producers/publishers/record companies who in fact supported the protests. Any attempt to make Black March more specific in its targets would, I think, make it unwieldy.

A further matter for concern is ACTA. This is a global treaty, on its way to being signed by about 39 countries. It purports to combat the manufacture and sale of counterfeit goods and the copying of patented medicines (for use in the third world – go figure – Oxfam are protesting loudly). Because the treaty wording is broadly and loosely drafted the results will be open to abuse, whatever the current governments say about their intent. There will be the potential to enforce invasions of privacy on a massive scale ‘to prevent piracy’.

Look at this YouTube vid:

Then subscribe to this news feed:

https://www.laquadrature.net/en/after-sopapipa-in-the-us-acta-makes-its-way-to-the-eu-parliament

And if you are in UK sign this petition:

http://epetitions.direct.gov.uk/petitions/20850

I intend to follow matters assiduously and will be glad to find ways of protesting and publicising the issues. I have contacted campaigning groups, my MP and my MEPs.

I know that this matter is merely shelved in US and not dead at all elsewhere. We need to stay alert.

What do you think? And can you help to spread the word?

 
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Posted by on January 23, 2012 in copyright reform, protest

 

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