What can you tell me about Autism?

thanks for your kind words anyway, Aimless

you're obviously doing a great job and any child would want a parent like you in their corner

the crb/whatever system is so grotesquely bureaucratic and outdated. we need a revolution to sort out education let alone anything else

dude have they refused him an EHCP?

No, he has a revised EHC plan that seems to have recycled bits from his previous statement and talks about preparing him for post 16 education, but just not at that school. Seeing as it is supposed to be an 11-19 whole autism school/college now and Alex is a definitive case of classic autism, they won't give a reasonable answer why they want rid of him at 16. Which wasn't in the script at the SEN tribunal we lost.

the general standard of EHC plans I come across is terrible and there was a piece in FE Weekly the other week suggesting that most local authorities are way behind in even producing them at all. I'm sure you know your stuff and I know how god-awful schools and tribunals can be when they just plain don't want to deal with a kid, but are you familiar with IPSEA? if not, have a read of their website, it includes advice line numbers iirc: https://www.ipsea.org.uk/

for example I'm pretty sure that by the time you reach year 11 your EHCP should name your preferred choice of Further Ed and any organization that wants to say no has to make a very very strong case

I would say that from my observations you will be completely surprised to learn that the way local authorities, schools and colleges are carrying out this work on the ground looks to my untrained legal eye a lot like they're completely ignoring the law and/or breaking it at every turn

In theory the EHCP should be completely empowering and legally oblige the LA to meet his Further Ed requirements up to 25 - but it sure doesn't feel like it is at times! There is a statement review coming up in a fortnight so hopefully there will be some answers amongst the waffle at this meeting. I really ought to have known about IPSEA, but as terrible as it sounds - I'm often looking for excuses to read anything but this type of important stuff that I should be reading.

Calzino, that is so fucked up. I'm sorry you and your son had to go through that shit.

Is there no way to take this up with someone higher within the school? It's entirely degrading and wrong. Sure you probably already looked into it but this assistant shouldn't be around kids imho. My sympathies.

I am also not a fan of "useful" reading, I feel you. The IPSEA site has some excellent guides to what local authorities should be doing. as I say, my experience on the ground is that most are bending heaven and earth to avoid doing their legal duty. it might be worth calling an IPSEA adviser and seeing if they can do some advocacy for you if you don't feel you've got sufficient legal backing at the moment, because you're right about what an EHCP is supposed to achieve and sometimes it takes somebody who knows the system backwards to make them accept their responsibilities.

I think some medication is probably needed when he is getting violently aggressive at least 5 times a day. As daft as it sounds: the strategic placing of cups of water helps. Even when he is in Id monster mode, if you threaten to pour water over him, he backs off sharpish. And then you can offer him the cup to drink as a calming measure. He has been banned from his transport since last week for persistent violence. Ironic that at the education tribunal we lost, one of the points brought up was that the local authority school don't train their transport escorts properly and they are generally not fit for purpose.

I'm sorry to hear it, calzino. This sort of thing comes up with adults with dementia, too. I've encouraged my loved ones to just give me the damn haldol without hesitation if I'm ever in that situation.

My colleague's book about death for kids (parents and teachers, too) on the spectrum is out! https://www.amazon.com/Have-Question-about-Death-Children/dp/1785927507

can't imagine how difficult this is to deal with calzino; if it's any consolation almost every autistic person i know has grown out of their violent phase once they get into their later teens

well that sounds encouraging. It is manageable inside the house, have explained to the neighbours because the level of noise he makes in rage mode is pretty extreme and some might assume a murder is occurring and call the police! But it is an almost impossible situation if you are on public transport or in any busy, crowded place - because most people can be quite hostile to such situations. The other week some helpful citizen told him to jump off the bridge when he was with my partner. In that type of situation when you are already stressed - I worry that I might lose self-discipline and end up swinging for some impertinent fucker! Not helpful - I know, but part of the risk assessment why going to places and stuff (other than greenbelt walks) is off limits at the moment.

have you got a sense of what triggers the violence?

Sometimes quite innocuous things like whether something goes into the rubbish or recycle bin or the wifi going down can trigger off an episode. But mostly - at least to my neurotypical perception - they just seem to come out of nowhere. As frequent as they are now, there could be so many triggers I wouldn't even know where to start.

also sometimes there seems to be a 10 minute delay in his response to situations, so you can't always tell what it is you have done wrong!

yeah I suspect there always is a concrete trigger but picking them out of the jumble of things happening out in the world can be nigh on impossible, never mind the limited possibilities for preventing these triggers from happening if they're the innocuous behaviours of other people.

it sounds like he's frustrated by disorder and he doesn't have the communicative strategies or patience to deal with it yet except by kicking off. he will develop better strategies and more patience as he grows up. stay strong bro.

Do any of your students have a PDA diagnosis? This is something that has come up in a conversation with a GP - not in a professional capacity, just chatting on a bus.

I think I've come across the odd one, it tends to be a footnote if there's a full diagnosis of Asperger's or autism. I've noticed some CAHMS services seem to be using DSM-V which lumps everything under autism and gives it a type 1,2 or 3 status. I'm deeply distrustful of DSM-V, it feels riddled with politics and unhelpful faddishness to me.

having said that I think demand avoidance is pretty common amongst young men with Asperger's, and it usually seems to be rooted in a desire to just do the thing they're most obsessed with - frequently that's video-gaming or some internet variation of that like gaming videos etc. it's pretty difficult for some young people to get their heads around the idea that somebody won't always necessarily be there to feed, clothe and house them and that they need to do things they find unpleasant or boring in order to develop their independence.

at the more confrontational end of that, I often advise tutors and support workers to use non-demanding language, to phrase instructions as requests and to treat work targets as something that the student has signed up to for their own benefit and progression, so that if they're not doing something they should it's not a failure of "discipline" but a case of them letting themselves down. tbh I think this is the approach you should use with every student, diagnosed disability or not. it comes more naturally to some people than others.

CAMHS, always cock that spelling up

We have just drafted and scanned the deregistration from school letter, because basically they are a bunch of useless fuckers that don't want him there anyway. The head of education lady played me quite smartly. When he got banned from transport she acted quite outraged and asked "can I be your representative here, because this isn't on". She didn't phone back since and is always in a meeting and I have called 3 times in the last 10 days and she never returns the call. If I don't pull him out of the school I will be in the farcical position of getting fined for non-attendance. These fucking people are more full of shit than Blairites and more monosyllabic than TM on mogadons. Absolute fucking nightmare to deal with and completely full of shit.

calzino I am so sorry that you are having to deal with this garbage. you and your son deserve better. sending you love.

Don't worry, he is better off out of that place. And thanks for the good vibes Owen.

Please say that "basically a bunch of useless fuckers" made it into the text of the letter somehow

I'd put in much stronger terms than that if I could, but you have to be careful in these times!

the "bunch of useless fuckers" have delivered bigtime today! I had to offer humble and profuse apologies to the head of education lady who I previously slated to some of her colleagues, but she didn't answer my calls for a fortnight. Anyway she has persuaded us to retract Alex's withdrawal from school letter at the SEN office. For a couple of weeks she is going to take him to school and back as driver and escort, until a taxi can be arranged with me as his escort at first, at least until a suitably trained one can be employed. And she assured us his violent behaviour is something they want to help him overcome and they have the personnel to help him. I can't really ask for a better response than that, especially in the current climate. Sometimes it is easy to forget that his dramatic behavioural shift towards daily violence and anger is a major challenge for them as well, and it doesn't always run like a well-oiled machine.

good news, glad to see people prepared to put the work in - no sarcasm, altho imo every child has an absolute inalienable right to have the work put in

I could be uncharitable and say the school have not dealt with the situation well + shit it about losing funding, but I'm quite humbled when someone is willing to put that type of personal 1to1 effort in. But yeah, I get ya.

https://www.vox.com/science-and-health/2017/5/11/15508006/what-causes-autism-spectrum-disorder-vaccine-theory

the url is misleading, this is a good piece

The idea of some people being more genetically disposed to external/environmental factors that may cause mutations linked to autism sounds plausible, not that I know shit. Definitely wouldn't have clicked on that url anywhere else but here!

I have just had my own kind of autism moment this week when I couldn't realise why someone who is very jovial and talkative with most people at the school keeps looking at me like he wants to drop me. It didn't occur to me that getting a taxi to park in a no-parking zone before the electronic gates to avoid all the transport chaos within the small car-park would absolutely enrage someone whose job it is to stop this kind of shit happening :p

When you aren't a driver things like no-parking zones are quite abstract concepts.

Because of recent dramatic events we have been prioritised for some respite, after getting turned down recently. That is good news. But the social worker also let slip that no progress has been made on the transport issue, and they are expecting me to be his escort for next term. I volunteered to do this last term as a temporary measure, and was reassured something would be sorted out this term. I can't work out why they can't employ someone to provide proper transport for Alex and the 6 or 7 other kids who have been thrown off transport. Using a taxi costs them £360 a week, alone for Alex and is a colossal waste of resources, and shows the money is there and is being misused.

I know it might make me seem like an entitled + ungrateful prick. But even though it is only 10 hours a week, I'm refusing to do this. Because it was getting the way of other things I need to do, and isn't properly meeting the terms of his statement. Apparently they are looking at bringing transport under the school's umbrella and training escorts in-house, but it is too late for Alex. This was my argument from the start: The whole autism environment the school is supposed to provide, should start as soon as they get onto the bus. And escorts who are throwing kids off the transport, because they are spoiling the harmony of their nice little drive through the countryside, are not fit for purpose and in the wrong job.

word.

i worked on a summer playscheme for disabled kids for more than 10 years, and part of that involved picking up and dropping off on a minibus. at least half a dozen children, morning and evening traffic, occasionally that could be a pretty long round trip for one or two. we always had at least one, usually at least two escorts as well as the driver throughout the journey, and some of our kids had potentially really challenging behavioural issues. i've had the occasional freakout with a distressed child trying to hurt themselves or lash out at staff, i've had kids trying to get up and strip off mid trip, all sorts. and it was a fucking joy to do, part of my favourite job ever, and as you say, if you don't want to do deal with children who are only being difficult because THEY'RE NOT HAPPY then fuck you, get another job.

We definitely need more escorts with your attitude NV <3!!

let's be honest, a lot of funny shit goes off on the bus too

Of course! There was a lad called Adam on Alex's bus who was extremely rude and loved nothing more than asking impertinent questions, but sort of hilarious with it. And in the 30 odd days I escorted Alex last term I only had one truly bad day.

I confess that the bus is an absurdly high percentage of what I like about my son's school arrangement!

The school's a mile away and he typically has a 30-minute bus ride (a it's gathering special-needs kids from a wide area). That's a whole extra our per day in which I know he's safe, I know he's loved, but I don't have to deal with him. Also he can sleep on the bus, so he gets some much-needed extra rest.

I hear that YMP, and can remember being just as content as you are with the transport. But alas not any more, and in my case the school is 20 miles away, hence my reluctance to do a daily 40 mile round journey, twice a day. Because certain people have just gone on their holidays this summer, and not given a 2nd thought about their dysfunctional transport problems that need urgent attention.

I hope things work out for you, calzino.

I'm not sure if I am being stubborn and unreasonable here, but will stick to my guns on this for now. Lol! will probably get browbeaten by formidable Julie (who is the head of education/family liaison person) who is an expert at getting her way, and crushing all opposition, without even seeming like a bad person.

i don't think you're being even slightly unreasonable

I'm going to quote you! I'll say there is a x-person who works with ASC adults, who says I'm being completely reasonable here!

i'm not a lawyer calz but in very simple terms the question i think is: is his school experience/quality of life being adversely affected because of local authority failing to meet the needs of his disability? if the answer's even halfway yes then i believe you're in Equality Act territory.

of course the reality on the ground is tempered by bloody-minded cash-starved local authorities but in principle their financial situation has no legal bearing.

(if you wanted to get devious i wonder if you could argue that the bus ride itself has a therapeutic value, as YMP was saying upthread - it gives the lad a sense of structure and mentally prepares him for school, whereas you could say he finds it more of a wrench being in the car with you.)

sorry for rambling, guess who's started back at work this week

No that sounds a reasonable argument and I will use it, and as well as the sense of structure it develops his sense of independence, because god knows - he already spends too much time with his parents.

also an excellent argument - other kids his age can travel independently

I had a heated argument with a social worker today, and under the pressure of me being 100% no surrender on the transport issue. And the arrogant pricks in Transport just as implacable. And him in between us, he was getting desperate and made a very judgemental comment to which I retorted his professionalism was going to shit here, and I called him a smarmy little prick. Probably not the best response, but fuck the little pissant! As usual Judith from the school is a formidable manipulator and player and is always on my side. Oh she was in tears when she heard Andrea had taken an OD etc.. But she hasn't phoned me back tonight. I think I'm just going to withdraw him from the school again, and home educate him for his last year. Whole autism school my fucking rectum!

Judith phoned back in jubilant mood, and Alex shall have transport and an escort from next week. She actually thanked me for being so obstinate on this and i suspect she is settling scores with people from transport who are causing her much angst in her job, and it is going to get much harder for them to throw students off transport in the future. Sometimes you have to stick to your guns, even when arseholes are making judgemental comments and you start to doubt yourself. Sorry for dissing you on ILX last night, Judith!

excellent!