Soaring Autism Children

Soaring autism; I envision loads of autistic children running down a grassy slope, arms outstretched, pretending to be aeroplanes. A few who enjoy a good spinning session could be helicopters instead. But sadly that's not what this post is about.

Last week, several newspapers published articles on increasing numbers of children in schools having diagnoses of autism. Among these were:

• Daily Telegraph: Number of children with autism soars by more than 50 per cent in five years
• Daily Mail: Number of schoolchildren classified as being autistic soars by 56% in five years
• Irish Independent: Number of children with autism soars by more than 50pc in five years
• Parentdish: Some parents claim their kids are autistic to gain advantage at school, claims expert

I assume these identical articles, all laden with wailing and the gnashing of teeth due to the burden of the dread autism, were based on press releases from either the group featured prominently in each, The Centre for Real Education (CRE) or the contrary academic Frank Furedi who's personal views on autism are accorded much more weight than they deserve.

The NAS has a useful, detailed and well referenced article about autism numbers and concludes "it appears that a prevalence rate of around 1 in 100 is a best estimate of the prevalence [of autism] in children".

However these articles all open with a discussion of how the number of children in schools diagnosed with autism has doubled in the past and with current figures of approximately 1 in every 125 pupils. I fail to see the problem. Autism is a common condition. It was under-diagnosed for years, the criteria were much stricter so that many people who have a disability were not getting enough support. Now the criteria have been widened, there is better recognition of the condition and more children are getting accurate diagnoses.

Furedi is quoted in each of the articles as saying,

"It is unlikely to be a genuine unprecedented increase in autism, rather an institutional use of this condition to allow people to get easier access to resources. This activity ends up trivialising what is a very serious condition for some children."

That's the opinion of a man with zero expertise in autism. He presents no facts to back up his claims and he can quite easily be ignored.

The CRE spokesperson says,

"Obviously children with autism need special treatment. But the rapid increase does suggest that perhaps the figures should be looked at again.
Children should not be classified as having special needs too easily. The rise should be examined closely because it has a knock-on effect for teachers, schools and the pupils themselves."

All children need special treatment. Children with a disability require accommodations to give them access to a good individualised education adapted to maximise their learning. This happens for some people but most autistic children in schools are not getting the support they deserve.

The CRE philosophy on education is set out here in their manifesto for common sense.

That title alone tells me much about how this group sees the world. They favour selective education, "meaningful punishment" for bad behaviour, traditional values, parental choice (for the kind of parents they approve of) and demand that lots of current progressive practices "should be halted." They want more emphasis on facts and knowledge and less on skills. They demand that art, music and literature lessons concentrate on approved classics.

They have a section on "Special Needs" 

When the proportion of pupils with genuine special needs is probably only around 5%, the educational establishment's acceptance of 20% or more is intolerable.[5]

Recommendation: Immediate steps should be taken to reduce the artificially high percentage of 'special needs' by ensuring that only those that are genuine are specified – and properly catered for. The widespread practice of exaggerating special needs to gain additional funding should be halted. 

Clearly I checked out reference [5] to see where those numbers come from- and was baffled to find that it was an old article by Minette Marrin in the Daily Telegraph. For real! This is what counts as reference-worthy to the CRE.

Minette Marin is one of those click-baiting troll columnists and I've discussed her before after her vicious and hateful piece calling babies with Down Syndrome and their families "damaged babies" and "damaged families". The only other person in the CRE list of references with whom I'm familiar is Melanie Phillips.

This is speculation presented with no evidence that the needs of disabled children are being exaggerated. The CRE are not worth listening to.

The NAS spokesperson makes a typically sensible contribution to the discussion:

"We know that with accurate diagnosis the right support can be put in place so that children with autism can reach their full potential. It’s very likely that all teachers and school staff will come into contact with children with autism at some stage during their teaching career, so it’s vital that they receive quality training and strategies to support these children in the classroom."

As usual the comment sections on these articles descend into a mire of anti-scientific, disablist nonsense.

I can't imagine why the CRE and Frank Furedi were considered worth quoting on these matters. I wish the papers would look more closely at the people sending them stories and examine their agendas.

Celebrate the New School

So how about a charming anecdote? Today, Duncan's school held a sod-cutting ceremony to mark the start of the new school building project. This is a really big deal- the building was approved 9 whole years ago but finalising funding was held up time and again. The current school buildings are totally inadequate- most classes are in flimsy, temporary buildings and the whole site is on a steep hill and since many of the pupils are wheelchair users, that's just not good enough. So everyone in the school is really pleased that finally, the school the students need and deserve is to be built. Duncan and I were invited to join the staff, other parents and pupils and some invited special guests for the event. Duncan ate a few sweets and was happy to see some of his friends and teachers, but then got a bit overwhelmed by the crowds in his hall and was bored waiting. He entertained himself for a while looking at photo displayed- even pointing out a girl whom he says is his girlfriend and will be his wife. I wonder what her opinion on all this is?! He then entertained himself taking photos using my phone- stick a bit of technology in that boy's hands and he's happy. He showed me a picture he'd painted depicting his version of what the new school should contain. He reckons there should be an oboe room (he's big into oboes atm), a "sweety" room, a pool (hot and with bubbles) a studio (where he could make animated films) and a cinema (in which to screen them).

Eventually, I took him out and we waited in the car. The people all moved on to the building site. Not knowing what parking would be like and since it was a lovely day, Duncan and I walked- rather he ran "Gru style" (Despicable Me) and I just about managed to keep up. In the site, pupils and teachers gathered for photos with the mayor and other dignitaries. Not Duncan- how could he when there was a huge and fascinating green digger to look at. He ran about the field for a bit and I dashed after him. Then he was given a blue balloon which after a while he let go of accidentally- and was momentarily crushed when it rose into the clear sky. He looked at me, seriously scared and asked: "the world will not end?" I assured him the world would not end, and he decided that the balloon would either turn into a fairy or go to the fairies. When I heard there was to be a mass release of the remaining balloons I thought it was best to just go home.

So it was nice but knackering- as time out and about with Duncan so often is. What I enjoyed most was the obvious affection with which he was greeted by so many staff and other pupils and how he clearly adores them in return. There's a lot of heart in that place.

Blog Update

This post might be a one off. Time will tell.

Each of the children are now attending school full time. Lady (now 12) started secondary school in September. It is going well for her. She had been concerned that she would find the work too difficult and didn't fully believe my assertions that she would cope well with everything expected of her. She lacked confidence in her abilities and thought my judgement of her worth wasn't objective enough to trust. She now knows for herself that she is smart, a good learner, flexible, social and far more organised that even I thought she'd be and this has boosted her self esteem. There are aspects of school life that she dislikes and many that exasperate me but the current system means that if you chose the school option, you get these things along with it. Lady is happy and the advantages for her and all of us outweigh the disadvantages so to school she goes.

Thomas (now 8) is in the same primary school he started just after Easter. He is happy too. He is so dedicated and conscientious, he works hard and still loves PE best. Like Lady he had made new friends. His school is across the road from a country train station just one stop away from the station 10 minutes walk from our house so he takes the train to and from school on his own every day. He enjoys the feeling of independence and personal responsibility.

Both of them are still in the gymnastics squad. Thomas left the men's artistic team and like Lady he now does acro gymnastics and tumbling. Lady is also in the cheerleading team and competes in an all-Ireland competition later this month. They are thriving.

Duncan (10) is also at school- one for children with severe learning disabilities so he gets the right level of adult support. I could not be more pleased with the school, his teacher and the other classroom staff. Duncan adores it and talks about it all the time. He tells me about his friends in the class and what they do each day. He is having a total blast. Today he will have gone horse riding for the 2nd time. The report back in his home-school diary last week was that he is a natural and loved the whole experience. He thinks he's Cowboy Woody so here's hoping he doesn't try to gallop off! Not just yet anyway. Every Friday they go swimming. They have had a magician and the Ulster Orchestra to perform for them. They've been on outings to the airport, to sheepdog trials, to the wetland centre and aquarium. Duncan loves going places.

I was prompted to write today to record the meeting myself and his dad had this morning with Duncan's teacher about his individual education plan. His teacher is obviously a perceptive person as she is utterly enchanted by Duncan. She realises he is very capable academically and is keen to encourage and enable him to be the best he can be. She thinks his little animations are so clever-she says that she is convinced that one day he'll be famous! - and that he is such a loving, happy and kind boy. She talked about all the ways they are helping him to progress in his self control, communication and understanding. It was a most positive and helpful meeting. I only just realised that neither of us mentioned the word autism once- we didn't need to. We both know that Duncan's autism is just part of all the amazing, astonishing, at times infuriating and always awesome way that he is so we only needed to talk about him and his environment and how to reduce the barriers he faces to be well.

Here's his latest video.

Trying School

Lady and Thomas were taken by their dad to visit the local Integrated primary school last Tuesday and both liked it so much that they decided they would go to try it out. So after I spoke on the phone with the school principal, we've arranged that they will start this Thursday so they go for a couple of days before the Easter break. I'll be visiting the school myself tomorrow morning to look around and meet with the P4 and P7 teachers to talk about what they do and to tell them about my children.

Lady's decision came as a complete shock; she announced a few days ago she wanted to visit the school with the others. She had previously always been adamant when questioned that she was not at all interested in going back to school for the foreseeable future. But she just realised that she wants to try out primary school again before she's too old. So, fair enough, off she goes.

Thomas has been thinking for a while about going to school for the first time in his life. He'd originally said he'd start next autumn term so we could all enjoy the summer together instead of being stuck in a classroom for the few months we have a year when the weather is half decent. But after seeing the school he changed his mind and wants to go right away.

We're trying to decide how best to arrange how to travel to and from school. It's one stop away from here on the train and they could easily manage to travel there and back together but I have a notion that wouldn't be allowed by the train company; unaccompanied minors etc. They could walk, cycle or use a scooter and go along the coastal path. Or I could copy almost all the other parents and drive them there.

I hope they enjoy this experience. I still think home education is a better way for children to learn; school is so very inefficient and takes up such a huge portion of children's lives, especially when you consider that even after they have spent almost all day in school, they then have homework to do. I don't know how the children will manage all their activities; Tuesday - Thomas has gymnastics then jujitsu, Wednesday - they both do gymnastics, Thursday - Lady has 2 gymnastics classes and Thomas goes to Beavers, Friday - Lady goes to the local youth club and the gymnastics coach told me yesterday she wants Thomas to start a class on Fridays soon, Saturday - Thomas does jujitsu and hurling and Lady has cheer leading, Sunday - Thomas does gymnastics. How are they going to have time to spend with their family, go to school, do homework, continue their sports and activities, play and hang out with friends, chill out and read/watch tv/learn an instrument/master a computer game/draw a picture/write a letter or blog post? How does everyone manage without bursting from the pressure?

I do want them to enjoy it and to gain from the experience. They are free to remain at school if they so choose, but if, having given it a good couple of months, they decide they want to be home educated again then they will be deregistered. This is not now the most straightforward of manoeuvres as some of the education boards are trying to fool parents wanting to home educate that legislation exists (it doesn't) to prevent the deregistration process.

I am keen to know exactly what they make of the whole thing, and think that for Thomas especially, he'll either love it or hate it. I don't expect him to merely tolerate it. Lady only wants to go for one term but she may discover that she wants to go on to secondary school too in which case I will have to try to find a place for her in one of the schools not requiring a pass on the transfer test.

I'll be here for them no matter what and boost them and help them know what they need and how to get it. Duncan and I will have more time together and that's always nice, though he may be going to school some time soon himself. Until he does (if he does) he's going to miss his siblings terribly.

School options - SLD

I spoke with an educational psychologist on Friday about school options for Duncan. She thought one of the schools for children with severe learning difficulties (SLD) would be best for him so he would get the highest level of support. These schools are not autism-specific but contain pupils with any condition, physical, sensory, emotional or neurological that impedes the child's ability to learn. I admit I was surprised for a minute or two since Duncan is well able to learn but on reflection I agree that if he was to go to a school, he would need a high adult to child ratio with well trained and experienced teaching staff. She said that although he is able in many ways he is "very autistic" and that his behavioural problems would make it difficult for him to "access the curriculum." She knows other autistic children who are like Duncan in many ways, who have the same problems with impulse control but who are bright and curious and who have done well at one of these schools. Duncan has done well at home having had a lot of individual attention and when we go out he has virtually one-to-one attention from me so to give him the best chance of succeeding in a school, the transition needs to be as easy as possible with the highest levels of care and support that would only be available in a SLD school.

I will go and visit the schools and speaks to the principals and teachers. I need to find out how the approach problem behaviour, check they don't use restraints and discover as much as I can about how they operate and whether I would be happy enough for my son to go there.

Complicated

I've been thinking for years about how to deal with some difficulties I face. This has taken so much of my time and energy, it's drained me. I've had no desire to blog while this was foremost in my mind. But thankfully now I have reached a decision I can be...well not happy about, but confident that it's the right one. It's a huge relief to know for certain and to start now making plans to move on with a new phase in my life.

I have missed blogging. I enjoyed keeping this record of my children's development and the silly stuff we get up to as well as sharing my opinions on autism/disability/home education issues with anyone who chooses to read them. It's been an important outlet; writing posts here has often concentrated my mind, forcing me to research issues to be able to write with some knowledge and understanding. It's been a way of making contacts around the world with people with similar interests and of connecting with others writing about their own lives and areas of expertise. I love reading blogs and even when I wasn't writing my own I have continued to read the blogs I've subscribed to, though I've very rarely commented on any. I have stopped reading a few that were just starting to piss me off with their lazy stereotyping, especially those with sexist and (all too often) disablist writing. I just don't have the energy to witness that stuff.
It means I stay away from many mainstream comment sites like CiF on the Guardian and the BBC websites- shudder.

Today I will meet with an education psychologist from the local education board. I want to investigate schooling options for Duncan. I'm not sure whether or not I will enroll him in a school again but will think about it seriously and figure out what he prefers. Thomas too is thinking of starting at school for the 1st time in his life. Lady has no desire to be schooled. I will support their choices.

I'm tired but getting by. I can be proud of how the children are thriving; obviously I am more than coping, despite the fact that my home is only rarely tidy and there's a long list of home repairs needing to be dealt with.

Also, the whole family is lucky enough to be going to Disney World for a fortnight in February. I'll be sure to see that the children have a fabulous time. It'd be very hard not to!

New Moon, headbanging and thinking for oneself

Duncan continues to take great pleasure in producing various pictures of Chuckie from the Rugrats. Is it perseveration? Do I care? Each picture is different in at least some small way. I think they're cute and funny and witty.

Thomas doesn't like to draw. He'd rather do maths or count the money in his Tardis money box. (I don't mean it's bigger on the inside, it's just shaped like a Tardis.) We've been doing some P4 stuff on Education City (free trial) and he's acing it all. Lady has used that site too and they both quite like it so I might subscribe. Does anyone have a code they want to share?

He's also decided he wants to try school after we return from our holiday in February (2 weeks in Orlando!) He says that everyone else in the family has been to school at some stage but he never went to nursery or school so he wants to see what it's like. I've been reading the prospectus for various schools and quizzing our friends and neighbours about what they think of the school they/their children go to.

Graham Badman and Ed Balls, do you see what I'm doing here? I'm listening to my child, I'm gathering information to help us both make the best decision about his education. It's not a matter of my rights clashing with his, despite the mistaken way in which you think about parenting and the duty on parents to ensure their child receives an education. If he's happy to go to school and it works out for him, then fine, he goes to school. But if he doesn't like it, he will be deregistered and his education will continue to happen at home and in the community as it has so far with great success.

So what else- we watched the latest Doctor Who, The Waters of Mars which was terrific, and taught that the homeopaths were wrong; water has patience not memory (via @jackofkent). Also, Gordon was in the US for a week but the children were still able to see him thanks to the magic of technology. Here's a screen grab he took from his hotel room in Boston as he spoke to Duncan and I via Google video;

Nice and clear eh!

What wasn't so nice was the cuckoo clock falling off the wall (where I had fixed it-guilt!) somehow and onto Thomas' head. He was sore and bleeding so I called a friend and neighbour who kindly rushed around with her little girl to stay with Duncan and Lady while I took Thomas to get checked out. The bleeding stopped quickly but you don't take chances with bashes to the head. I went to our GP 1st as it's very close and told the receptionist what had happened, her question floored me (not really) -"Does he have an appointment?" Yes really!

She advised me to take him to the Minor Injury clinic in town so I did and he was seen and sorted very quickly. Thankfully there was no evidence of serious harm and he didn't even need a stitch.

The following morning my neighbour minded my children again while I met with a psychologist to discuss Duncan and to seek advice on issues I wish could help him deal better with, like his impulses and angst driven shouting. I don't know how useful it will be. She used the word "behaviours" which I dislike intensely. I've been given an assessment form to fill in; ABAS II for those familiar with such things. It's interesting, but leaves no space to detail many of the skills and abilities he does possess, but I suppose they are deemed "non-functional" or something.

Lady continues to work hard at gymnastics. She trains for over 15 hours a week and loves it. I watched her at cheer-leading on Saturday and was so proud of her strength and poise. Her acro partner and sister are visiting today, no doubt they'll be showing off to me on the trampoline.
I took Lady and her close friend (who lives next door) to see New Moon, that Twilight film yesterday. Oh my, what hokum. The girls enjoyed it even as they were laughing at how silly so much of it is. That Bella Swan girl is so pathetic, glum and wan. She never does anything but mope and have nightmares. Has she no hobbies? Her face would break if she cracked a smile. The girls can easily see she's taken all that first and fiery love thing too far- jumping off cliffs and riding motor bikes with no helmet just to produce ghostly ticking-offs from Mr Chalky.
They both thought Jacob the were-boy was the better bet, if forced to choose and I think they're right. Both have acknowledged the inherent ridiculousness of getting involved with anyone who could either claw or bite you to death at any moment and do not think it's romantic, just that it makes (for them) for an engaging fantasy.

I say this as some of the chatter on the Twilight series warns of the danger to girls of thinking that bad boys are best; but I have much more respect for girls' ability to see it for what it is, a rollicking bit of escapist nonsense.

I laughed a lot, and was elbowed fiercely by Lady. It's not supposed to be funny when Edward with his LOW slung trousers starts to unbutton his shirt in the sunshine, but it really was. He has such big hair too, I wonder what product he uses, something specially developed for the dead?

Michael Sheen was great fun as an evil vampire overlord. It was extra delicious since I think of Tony Blair whenever he's on as he's played our previous beloved leader twice in film and will do so again soon I've read. So I was watching and thinking that the evil leader of the vampire council is Tony Blair. Good job he didn't get the European presidency he sought, dread to think what he's have done with the increase in power.

With all this nonsense I end. But having read Mike and Sarah's posts on the latest pile of bile from Minnette Mirrin, I'm rilled up enough and will be back with some whinge blogging imminently.

Explaining autism to class of 8 year olds

Last week a reader asked for advice on how to tell children in his/her son's school class about his autism.

I've discovered that some boys in my son's class believe he is brain damaged. Now they're not evil children and were happy to talk to me about this. They just want to know what's 'wrong' with their well liked classmate. Age of these children 8ish.

I've mentioned it to his learning support assistant and class teacher. I think a class talk is necessary. The problem is my son thinks he's perfectly normal with something called in his words 'I forget what is it again? Oh yeah Autism.' Of course to us at home he IS perfectly normal. He's aware that he behaves differently from others but he's very happy about this difference.

The county autism team have suggested that my son not be present when the talk is given. I don't know about this.

Can anybody help?

How do we go about this? How does anyone explain autism to a bunch of children without resorting to cats and mawkishness?

I don't know if it would be right to have a class meeting about the boy without him present. It would be better, in my opinion, to have someone, you the parent? talk to the class and then take questions. Your son could say a few words too if he wanted.

I tell children who come here that Duncan is autistic. Then I explain that it's a kind of disability that for him means it's harder for him to speak and understand other people and that he likes to do things in a different way from most boys his age. I've not had to tackle the class situation and most children who come here don't play with him much anyway as he just ignores them. I know what you mean about cats and mawkishness. Since I've been of no help, I'll leave this post up and invite the clever people who read this to leave their advice in the comments.

Decisions

I've had better days. Sure I've had worse, but I'm worn out and feeling negative. Dealing with Duncan today was no picnic. He's been shouting, screaming, wanting to have things go his way and making loud protestations when they don't or can't. My head hurts from the noise. He's full of plans to act out songs and not everyone wants to play along. Lady had 2 girls over to play for a while and he was roaring and thumping on her door to get them all to line up and pretend to be marching ants or something. Later, he threw a toy and it hit a picture hanging over our bed, shattered the glass which scattered all over the bed and floor. Thankfully he'd been standing in the doorway and wasn't hurt, and it had been an accident but it made me feel closer to overload. He was very sorry and drew one of his apology pictures.

But he's been acting, I think, more loud and hyperactive recently. It might be an effect of winter weather and not having enough time outdoors, which will improve with the better weather. He has an appointment with the paediatrician soon and I have been reading about people having ADHD with autism and looking into stimulant medications. It seems from the trials that children with both conditions can benefit from very small doses of stimulants like Ritalin. I will talk to the doctor about the possibility of trialing one of these drugs with Duncan, using the smallest possible dose and keeping a careful eye on the side-effects it might have. Though I'm anxious about using such medication, at least I can be sure these drugs are approved for the treatment of ADHD. I think it's worth trying it out as it might help him concentrate more on tasks other than film making, and help him learn more easily. And if it doesn't help or has side effects, there is no noted risk to suddenly stopping the medication and we can try something else. There's always something else to try, drugs are NOT "my last hope" or anything. If this fails or if I'm advised not to try them, we'll be fine.

On a related matter, I was tidying a cupboard and showed Duncan some pictures of his old school, not the one he went to last and which he asked to leave, but the school before that which he had always (as far as I could tell) enjoyed. I had preferred that school too and only moved him as the 2nd school had opened a dedicated autism unit which I'd thought would benefit him more. But the home-school communication wasn't as good as at school 1; there were a few notes home that baffled me. For instance, I was told once that Duncan wouldn't settle down and insisted on "running around too much" during a PE class in the school gym!

Anyway, Duncan asked to go to the school and named one of the children in the picture. This is a child he hasn't seen or heard about for 3 years! I asked him in surprise if he wanted to go to school, and he said, "go to school and play with the toys and then come home again."

I got thinking, often a dangerous pursuit. Perhaps it is time to try out school again for him. (Lady and Thomas are utterly uninterested in school.) While I can take him out with me, there are no groups around here that he can be part of, unlike his siblings who are in various sports and social clubs and who see their friends from the street regularly. He went to a Saturday club for learning disabled children twice but he was just too autistic for them, and anyway, it closed.

There are pros and cons no matter what I decide, and I just want to know what is best. Again, if he does go and is not happy, I can simply stop sending him, but is it worth the potential upset to find out?

I'm going to contact the educational psychologist and ask to meet her again and then I'll take a tour of the schools and meet the teachers. He will have to go to one of the "special" schools as there is no such thing yet as proper inclusive education and he would flounder at a mainstream school. Besides, I'm not counting on school to provide the main aspects of his education, he'll still get that at home. I just want him to have a chance to go out somewhere and be with other people now and then.

No doubt I'll update here when I know more.