What can you tell me about Autism?

Good to hear things are more positive today, Marcos.

I bumped into this 36 year old man with autism today at the swimming baths, wonderful guy who likes to shake both your left and right hand. As was his support worker who has been working with him for 14 years. It is always refreshing to talk to people who actually understand autism, sort of gives me a positive lift for the day. When you feel like you are on your own you can sometimes become vulnerable to other peoples hostility and shittiness. Sometimes just a simple chat can be good therapy.

Some depressing bullet points from the latest NAS survey. I am quite a bloody minded, stubborn type - so when people are arseholes towards Alex I get in their faces and let them know how wrong they are and it even makes me even more determined to take him to his favourite cafes, swimming pools etc, not that it isn't completely depressing but I do have the armoury to deal with it. When ASC people + carers are becoming socially isolated because of arsehole behaviour then attitudes need to change and perps need to feel the full weight of anti disability discrimination laws or something.

In a separate study: "Researchers from Newcastle University said the age of diagnosis has not decreased in a decade - still averaging four-and-a-half years. Jon Spiers, chief executive of Autistica, the autism research charity that funded the study said ways to speed up diagnosis were needed, especially for "those left isolated for too long, such as girls with autism".

*79% of autistic people and 70% of family members feel socially isolated
*84% of autistic people said people judge them as strange
*50% of autistic people and family members said they are so worried about how people will react to their autism that they "sometimes or often" don't go out
*74% of family members said people tut or make disapproving noises about behaviour associated with their child's autism

It is always refreshing to talk to people who actually understand autism, sort of gives me a positive lift for the day.

completely, i am so grateful for these people, friends of ours who get it and know how to communicate w/ J are so important to us

and connecting w/ other families w/ kids on the spectrum or who have related conditions has been immeasurably valuable

I got an email from an autism support group about a local school having it's autism provision closed. Then after a google I noticed that my LA has been closing all the autism provisions at all the mainstream junior + high schools, including the one Alex attended for 2 years. Fucking cuts.

We just donated a zorb (huge fucking inflatable ball that you wear) to the school for some sensory fun, because it wasn't practical in our garden or without a car + portable pump. I was loading it onto the school transport + this kid at the front who is never short of something to say says "You are giving it to the fucking school? Why didn't you give it to me?". You had to be there obv

Alex was supposed to be getting his booster immunisation jabs, it is not happening because he starts kicking and throwing punches when he sees needles and he is very switched on to any types of kidology or "surprise attacks". I explained to the school that the only successful invasive treatment was when he was put under gas for dental treatment. But they sent me to a health centre to try again and the only way I could restrain him adequately for two injections would bruise him or he could get sufficiently upset to trigger off an epileptic fit. And it was the exact same nurse who had failed to inject him at the school. Just a complete waste of fucking time, again.

surprised nobody has come up with another way of administering meds for situations like this

i'm so sorry calzino, those situations freak me out and they are super hard

miraculously we had a dentist trip that worked out very well, amazing senstive dentist who works w/ all kinds of kids every day so he had some idea of what to expect. it was basically just a cleaning though and i have no clue (other than gas) how J would make it through a cavity filling

That was exactly what I was thinking. The nurse told me to talk to the GP who was a total supercilious arsehole with a withering "what's this got to do with me attitude" so trying the paediatrician next, he is a good guy and has so far been pretty solid.

xp

obviously any google search for autism and injections is doomed to founder in a sea of idiocy

Gas is a good solution because of it's rapid speed but I don't know if there is some issue of mixing it with immunisation jabs, but it is the only solution I can think of.

lol yeah! we were joking that Alex is going through an anti-vaccine period!

haha

i think it's more that the risk with gas makes people reluctant to use it unless there's a "serious" need? they don't seem to routinely offer it to kids at the dentist any more like they used to

Alex got gas about 7 years ago to remove a first tooth he had damaged by constantly tapping it with stuff. There literally is no other way he could have had dental treatment without it. I will sign a waiver for gas any time, the chances of it killing him are absolutely minuscule.

absolutely! just saying it seems to be shied away from by medical people nowadays.

wonder why you can't take everything on a sugar cube like in ye olden days?

I asked the nurse about that the other day, she said something about it having to go directly into the bloodstream to work. Even a nasal spray would be more doable than a needle, but if you could it into Nutella the job's done!

*put it

Today I faced off a bunch of thugs who were taking the piss out of Alex. I just called the biggest one a sad prick and gave them the middle finger from the back as I walked past. Because they didn't get a hot rise out of me it nearly killed them. When I got to the bus stop I heard a noise and noticed they had ran off. It turns out this nice old middle class type lady had heckled them from her car and one of them had threw a full lager can at her car and it dented it. When she came and told me what had happened to her car I didn't know what to say because the bus was coming and I was burdened with loads of shopping. I am going to ring the police about this tonight, fuck it.

Oh sweet merciful jeebus calzino. Good on you for defending your boy and generally advocating.

The reason some medicines/vaccines can't be taken orally is that they're protein-based. Give your stomach a protein and it says "yay food" and tries to digest it. That's why diabetics can't just eat insulin, and must inject.

People are working on ways around this - I heard a thing on the radio about a type of subcutaneous capsule that dissolves when hit with a laser, and you can modulate dosage that way. Not helpful for a kiddo who can't have a vaccine, but there is work being done in this area and I hope that work continues.

The obvious solution is to have a nurse stop by the dentist's office when he's already getting sedated dentistry, and just do the vaccinations at the same time. This seems as likely to happen as my butt flying to the moon and back before breakfast, of course.

Just rang the police and it was a waste of time because the lady whose car got damaged hasn't reported the incident.

He has only ever had sedated dentistry once in his life, YMP. The dental check ups aren't much fun either, but we manage to muddle through them:p and thanks for being nice!

Alex finally had his booster vaccinations today. He fought hard and resisted the needles for a good 40 minutes until they weakened him by pouring buccal midazolam onto his crisps! It seems quite funny now but was stressful as fuck at the time.

https://www.youtube.com/watch?v=6JsmtRJ7M24

There has been a lot of hard work to get to this point, but it has been worth it.

I don't know you, Calzino, but that made me cry for joy. Just wonderful.

same, that is beautiful.

:)

thanks people :)

:D

Fantastic :)

Today my son came home from school in a changed t-shirt and jumper. Some classroom assistant had decided that he "smelled bad" because another student said so and refused to sit next to him. So they singled him out and changed his t-shirt and jumper. The returned jumper + t-shirt had a total neutral cheap washing capsule fragrance, but no hint of shit or BO. So I have put a sweary fuck you reply in the dairy (with the caveat of a serious formal complaint if they repeat this pointless bullying shitiness) because I actually mean it and am sick of dealing with these incompetent fucking arseholes. It also coincides with them not offering any other schooling beyond 16 on his latest statement and us telling them that is lame after what they were offering at the educational tribunal we lost.

holy shit

do they let just anyone be a classroom assistant

Definitely yes, as long as you can pass a crb check, then you are fit for purpose to be a classroom assistant or even do any job in schools. Ian Huntley was ok but anytime I worked on a school job this embarrassing caution I have for for theft used to always resurface!

Some of the classroom assistants in special schools are just not fit for purpose and there are more likely to be more of them in the future than less, sadly :(

ime, whether things go well or poorly always comes down to the quality of the people involved. you are, of course, foremost among the great, dedicated people alex has going for him. the others come and go and are good, mediocre or bad without much predictability. how well are you handling the burnout problem (your own, that is)?

I don't really believe I have it that bad tbh. I do drink a bit too much, but I walk a lot and exercise a lot as well. We are all burning out really, nothing spesh about my probs.

glad to hear it. if it were bad, you'd be the first to know

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