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.