What can you tell me about Autism?

I thought that Lorax's sitewide ban from 3 years ago was self requested?

mods request

The plot thickens.

my son wandered off from the Co-op whilst I was in the queue tonight, the queue was only one deep and normally he just plays with the dog who is tied outside whilst i pay. He is 13 and non-verbal and with very poor spatial awareness around traffic and extremely vulnerable. After running in various directions in panic mode I went into the PC shop next to the Co-op and phoned the police and then ran almost a quarter marathon looking for him and went back to the Co-op, where their staff had discerned from the PC shop guy what was going on and were checking the CCTV footage. Then whilst I was running about the area like a maniac the police phoned me and asked me to return to the Co-op to identify my son on the CCTV footage and then go home, because they can't send out the search helicopter until they have checked he isn't at my house. I was in a bad state at this point and severely dehydrated, then he said we have a 100 officers on this, so go home. In my state I said "Bullshit" but there actually was shitloads of police in the area.

They found him on the edge of a neighbouring estate near the local high school about half an hour later. I actually hugged the copper who told me, whilst properly losing all remaining dignity and he was a big bastard and looked quite awkward!

I am glad I didn't hesitate to ring the police because they did a fucking amazing job. I am just glad his mum wasn't home and was at the local Town Hall when it happened. She went to a meeting about local A+E hospital closures and all I get is "I'm away for 5 minutes and this happens". But she is quite ill right now and the stress would have been bad.

I am looking into tracking chips tomorrow, because this is not happening again.

Jesus. Glad it turned out OK. Hope you get over the shock quickly.

I still can't sleep tbh, but at least in a good sort of elated and relieved manner, but jeez, Fuck me, what an evening.

On the positive side - what I did right was not hesitating calling the police and explaining his level of vulnerability well to them. At least that is the victory I am giving myself tonight, it still could have ended bad.

it's horribly easy for this kind of thing to happen, try not to make yourself feel bad about it dude, glad it turned out fine.

seems like you did exactly the right thing but fuck that must have been scary. was he ok after too? hope you get some sleep at some point

He was more than fine and in quite a giddy mood, it was all just a lark to him. Whilst I was giving the police a statement he was doing an opportunist kitchen raid on his rationed supplies of crisps and nutella, which is standard behaviour. Hitting the shiraz at 3am helped with the insomnia but oh dear I'm feeling rough as today, but still quite overwhelmed at the feeling of relief.

Today his school are going to try and teach him a social story about the dangers of his type of adventurism, hopefully some of that will stick to him.

damn man. that's some tough parenting hurdles.

We call him Notorious Al now, because since that incident he keeps getting recognised by different police officers throughout town. I still need to sort out some kind of GPS tracking device in case it ever happens again, I know it is built into most smartphones but that isn't really practical.

On Sunday we were out walking the dog and I took him back to where he was found by the police to see if there was any reason why he was drawn to that area. He seemed very interested in the hissing noise from the gas distribution point and one of the houses had a large pigeon coop in the garden. As odd as it sounds little things like this are a major attraction for him.

can see that. interesting noises and other sensory stimuli are definitely a big attraction to some autistic kids.

http://www.getwestlondon.co.uk/news/west-london-news/police-appeal-trace-vulnerable-boy-10889818

"David also likes travelling on the transport network and, when missing before, has been found on buses and trains." Hopefully this kid will be sat on a bus somewhere rather than finding danger, that love of travelling on buses and trains is so ASD typical.

Since Alex had his own adventure I keep googling these missing kid with autism stories. The frequency of this happening and the amount of times it ends badly says to me that GPS trackers should be essential safety equipment for ASD kids. Not that I have found a practical option yet, there is probably a massive gap in the market here for entrepreneur types.

could you put it on a belt buckle? Or sole of a shoe? These are probably stupid things for me to suggest but it's what occurs to me.

http://www.wareable.com/internet-of-things/the-best-kids-trackers

The problem with the watch/bracelet type devices is that ASD people often have an aversion to wearing things. PocketFinder looks quite good but rather expensive, although it does looks rugged and fit for purpose. I am going to read up on some of cheaper devices first, see how reliable they are.

Glad to read that the kid from Hounslow has been found free from harm in Westminster this morning.

i think the best bet would be something somehow stitched into favourite items of clothing but i don't know how big the tracker needs to be, assuming real life is not the same as James Bond

one guy i knew used to wear a jumpsuit with parents' phone number very visible on the back

Yeah labels with contact details are always a good idea and so are jumpsuits! Most of the GPS devices seem to be pocket sized but they do require charging. It seems some of the cheaper ones require a sim-card and send back their current location when you phone them and some require you to pay an annual subscription for online services. Some of these devices have Voice surveillance built in, that seems a bit creepy and indecent tbh - especially when it is a concealed device.

I heard some self-congratulatory beeb cack about The A Word on R4 today. Not watched it (and don't intend to either) and just expect it to be The Archers with some added hand wringing about cute-non-verbal-boy, boo-hoo, type trite shit like you expect the BBC to produce ad nauseam. I am not expecting them to portray the diversity of people on the autism spectrum, like young adults, middle aged people or women, or perhaps people not from model middle class families. Or even the diversity of the autism spectrum. No, not the fucking BBC, they are obv going to go down the standard cute m/c boy trope and then pat themselves on the back for being myopic, mediocre, condescending twats afterwards.

I know this lady who works in the local Asda who has two children with autism. One of them has ADHD running with it, one of them has a form of Tourette's running with it and her husband also has a diagnosis of Tourette's Syndrome. She always says she only works there for some time out, but she says it without a trace of self pity but I can see in her eyes, a kind of jadedness/ennui that I understand.

One of the bits I caught from R4 today was that the Eccleston character in The A Word says something cringeworthy like "The boy is broken, we need to fix him". GTf back into yr Tardis, you fucking hack eejit!

Sorry, I have had a few beers and have been arguing with my partner about this shite and needed to vent.

sure thing!

i am feeling overwhelmed right now. we are considering a move to be closer to my family but the area where we might relocate seems to have a somewhat substantially lower level of services available than where we are now. my son is in a good place where we live, the inclusion school where he's at is pretty amazing, somehow, especially for a school in a huge urban public school system, and we have a lot of private therapists and groups w/ whom we've built good relationships, we feel pretty established w/ his services right now, so we don't want to leave that, but we are also faced w/ a fucking insane cost of living here which is not sustainable for us in the long term. we are looking into the services available in the city we might move to and they are just not at the level we'd want even if it is way cheaper to live there.

also we just got back from a family trip and my son, who is pretty high-functioning especially when well-rested & well-fed, was just totally overstimulated by all the new people & places, he had a great time but there way more challenging moments & tantrums then we're used to, he pretty much didn't want to be around me in any way and that was super hard

marcos i'm sorry, that must feel awful when your kid willfully blanks you out, you're right tho about overstimulation being the big distractor.

if you're in the uk please ilxmail me, i've got a few organizations i could suggest that are v. helpful. if you're not here then go ahead and chat anyway, on this thread or privately, there are definitely enough posters here with experience and knowledge who have important stuff to stay

xp
Yeah, I know where you are coming from and whenever you feel like your inner psyche has become sufficiently calloused up to deal with various difficult behaviours, they have this tendency to take you out of your comfort zone!

The first time my son started getting violent was bleakly depressing, but now I can deal with it a lot better than I did a few years ago. There never seems to be many comfort zones between these increments of getting used to stuff, but that seems to be the case with many things in life.

Good support vs sustainable cost of living is a real difficult one, GL with it.

yowza, marcos - sorry you're going through that. Sympathies.

I've done some of the same math in my head - lower cost-of-living, but fewer services provided - so I empathize with you. Hard decisions all around.

For us, I know we're paying a lot to live where we do (CoL, taxes, etc.), but we simultaneously feel fortunate that so much care is provided as a matter of course. Some time ago I had a little a-ha moment of connecting all these "free" services to the exorbitant tax bill and cost of living, but I know it isn't as simple a tradeoff for everyone.

thanks everyone, it is nice to be back home at least, seems like me & my son have a completely different relationship when we are back into our normal routine, he is happy to see me again. the trip was also just completely exhausting for both of us so that exacerbated things -- when i'm not my best and he is not his best, things deteriorate quickly. when i'm exhausted i tend to get really impatient and attempt to take a "harder line" approach which is ... not at all what my son needs. now back home into our routine i'm much more aware of how much patience he requires of me and i feel like i can be a helpful & supportive father again

NV i am us-based but i appreciate the offer of support very much!

good news too is that my wife found what seems like a really good agency in the prospective city, so that's exciting

we're also aware that if we move we might have to fight a little to get the services specified in our IEP, here in boston it has been a breeze so we haven't had to fight at all. we're a little nervous about that possibility, my wife is an amazing advocate and i know we can do it but i also want to avoid going into "battle mode" and making things worse

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.