Adults with autism usually cannot live independently on their own

[RhinoKey]

According to the Daily Mail (I know, I know) here

AIBU in hoping that this is wildly exaggerated (for my DS2's sake if nothing else).

NiecieTheTerminator Thu 29-Sep-11 18:40:52
Hecate, would you call living in a flat with a support worker independent "living though? Not saying you are wrong (how can I, I don't know what you think!) but that isn't independent to me. The individual would be reliant on the support worker."

Well, yes, you're right. Years working in support for adults with ld/mhp has given me a whole set of terminology. Independent Living is not the same as living independently as it's seen in nt world . My eldest would not be on his own as in 'yer on your own mate, good luck with that' but he would Live Independently (capitals required ) with support.

Kladdaka and justgetting - do you have any advice on how a friend can help someone going through a phase where they're shutting down and being much more autistic than before?

My friend had a scary experience some months back (public transport catastrophe, no way she could get home that day, fortunately called us asking 'what do I do', told her to come back to ours as we lived nearby, lots of wailing 'but I'm going home' - yes but you can't get home tonight), and she's been in a right state since, to the extent that my 3yo ds and dn have noticed that they now have better social skills than hers. Playing with them seems to help her but I don't know how else I can help - but she's got so introverted (?) it's like my friend has gone.

May I ask that those of you that have a love one who suffer autism have you used the GAPS protocol and if so how did you fare?

Hi littlegreen there are lots of people that use the GAPS diet in on the SN boards. Seem to report that it is excellent.

btw, we tend not to use the term 'suffer', although not sure why because my ds certainly 'suffers' from his autism although to be fair, I probably suffer more because of it currently.

Thanks Starlight. Sorry did not mean to be rude but have reading about GAPS a lot lately and it seems to be relevant to a whole range of ?conditions?.

GAPS diet?

I read the words "can help your child recover from autism" and dismissed it as gubbins.

My children are on a gluten free diet and this has certainly helped them in many ways.

I just instantly dismiss anything that claims to be a Cure for autism.

Is it worth looking at then?

cestlavia absolutely

I struggled to define ds3 for years- put him by a PC and he flies, in RRL without seeing him well supported by familiar teachers 1-1 you'd think he has LD,

I now use the term functionally impaired: he night have an averageish IQ and be able to talk but he is severely functionally impaired- things like severe attention issues, unclear speech, naive like a 2 year old...

that is what will take his independene, not the particular label that has been ascribed to him. In particular his inability to develop coping skills, whereas people like Ros Blackburn seem quite able to develop those and use them with support. DS3 just doesnt have that level of self awareness IYSWIM.

*and YY to Hecate wrt to cure for autism. Autism can be amneged and diet can be part of that but anyone who uses the word cure is preying on the hopes of vulnerable parents and should be soundly thrashed frankly. Management, in aprticular development of those all imposrtant coping kills, is fabulous- cure a bunch of arse'

notcitrus

She needs a crisis plan. My daughter and I both have them on our phones. I don't know if this can be done on a normal phone, ours have special autistic support software on them.

She's in a state because her situation, to her, is chaos. Her brain can't sort out the important stuff from the rubbish and order it when she is stressed. A crisis plan is a step by step 'what to do if x happens' covering all possibilities. So effectively the phone/plan takes over her brain's executive function until she feels able to take control again.

My daughter's phone is like her lifeline. All her crisis plans are in it. She even has special exemption to take it into exams.

Nptcitrus

is the shur down regular or a oince off?

If regular the first step is to be screened for epilepsy, absence epilepsy can show like this and anyone with an ASD is of raised risk.

(We've been through all this with ds3 so something am aware of- all clear for epilepsy which leads to....)

Then you can go on to step two which is identifying triggers; for ds3 groups larger than about 6 seem to trigger this: personally I adore the book functional behaviour analysis for autism which I bought on Amazon as a guile to interpreting behaviours in less verbal people.

often dealing with the trigger sorts it, or it passes as a pahse but with ds3 we could control to an extent but it seems to have been a later development that did cause havoc for him; it means he can no longer access MS school (he is in a base where integration is encouraged but hs been pulled out completely now), it means he functins at a far lower ability range than he was looking as if he would be aiming at. It was sad really as it came on quite alte overall- he's 8 now, so maybe about 6.5- but seems to have been the step too far for him.

The phones are fabulous but when someone doesn;t have one (I know afew people with phone phbias ) a simple plan on a laminated piece of A5 card can help, just like a step by step list using pics where needed.

I used to ahve them for things like using the till at wotrk- had no idea why at the time but understand why I needed them now- and it amde a complete difference.

Peachy, I rarely use mine. I'm a massive technophobe. Most of the time I write my plans into my old fashioned diary.

See I am fine if someone calls me as that indicates they wished to speak to me, otherwise I can't talk to people very well if I cannot see their face (emotional triangulation?) and I rely on FB / email an awful lot. good friends are fine with it, they know I won't call them but it's not rudeness.

Notcitrus, ?it's like my friend has gone? this is very painfully familiar to me, (but they are still in there, but may not believe that themselves and need support to re connect) but I?m unsure of the level you?re talking about?

Is it ?just? (not minimising that) an introversion/anxiety state? Or has there been a dramatic shift over and above that?
What I?m talking about is finding the person?s character virtually gone, (a stranger in their own body) or in a fractured heap of uneven parts, totally non functioning, or combination of both states.

You use the term ?phase?, any particular reason?
More info would help. 

I?m unqualified other than by holding my friends and family together as best I can, and all my opinions are just that, opinions.
Son?s dad slowly slipped away inside himself and stopped functioning, to the point of not recognising his previously adored child or his name, friend had a three day total meltdown and came out of it non functioning in a practical manner and with an apparently different personality.

Both had the same very exact look in their eyes that my (ASD) son had when he started to regress and lose skills when he was small. I saw it and recognised it, but can?t explain it more than that.
All three of them have high Iq's and exceptionally low Eq's and a lot of retrenching 'methods' have been based on that.

Is the travel disaster the catalyst, or is it that life?s quietly fracturing or unravelling and the travel disaster is a symptom of her not coping with it?

If it?s the former it?s a ?single blow event? and theoretically can be tackled differently from the latter, ?multiple blows? (so it?s tempting to assume a symptom of a problem, is the cause)
As Kladdaka has suggested, for the former, crisis plans and a recognition that she wasn?t helpless, she successfully summoned help from you and needs to not see that as ?failure? to cope. If it's the latter it can be a long haul

For many there needs to be a back up system for phone/signal loss for crisis plans.

JustGetting of course youa re qualified to give an opinion: why wouldn;t you be? experience is everything. Even at uni it's the two aprents in our roup who end up leadingt eh debates, not the proffessionals.

Although if seceretly you'd like to be qualified, OU is doing an Autism module now apparently, and Birmingham does a distance one. I am based in newport though which is cool as the MA is ridiculously cheap yet in this field well regarded LMAO.

But goodness woman, you ahve a lot of skills to offer, don;t put your views down!

I shut down sometimes mind and it is nothing- just like a brief reboot. means nothing at all.

Peachy's picked up on why I was asking about why you said 'phase'. (Teach me not to read latest before pressing send :-) )

"I have to change the way I term "Autism" I think, My son is severe no speech, nappies at age 9, limited understanding of the world, SLD school etc etc to me someone with "Classic Autism" just wouldnt have a degree or be working, having relationships etc etc, maybe someone with Aspergers or ASD? I know its a spectrum but to me Autism describes the more affected individuals."

I agree with you. Until recently autism meant exactly this kind of child/adults. It is only relatively recently that AS and Aspergers and sometimes autism, is used to define children and adults with much milder levels of autism.

Peachy, I've signed up to do that OU autism module. I start in November.

It's interesting to hear that you find it easier to talk to people if you can see their face. I'm the same. I hate making phone calls. I've been told this is really unusual as autistic people usually prefer not to have to look at someone's face. But I watch their mouths. I think there's some unconscious level of lip reading going on or something like that.

Peachy, cheers. I talk better than I write :-)

Lesley, I don?t disagree with the view that ?AS and Aspergers and sometimes autism, is? (now being) ?used to define children and adults with much milder levels of autism? and believe this originally had a lot to do with LEA's seeking to make it a 'high incidence condition' in schools for funding reasons, but I worry that people seem to think Aspergers is an automatically ?milder? form guaranteeing independent living, and Autism is an automatically ?stronger? form guaranteeing the opposite.

I think it?s a little like seeing Meningicocal septacemia as being a ?milder? form of Meningitis, because we all pretty much understood Meningitis and it was easy enough to see, then we realised there?s a second branch and more survivors, therefore it got seen as milder, at a terrible cost to some, if that makes sense.

Until recently those with a high iq but severely affected by Aspergers were just classed as mentally ill, deliberately difficult and often oppositional especially regarding continence. Autism as a route cause wasn't recognised.

I think in the long term, if politics doesn?t get in the way, there will be a total re grouping on types of autism, and some surprises as to who ?fits? where.

For me Kladd I think that not being able to see the face is like missing 1/3 of the message- it's a composite of words, tone and body language; my understanding of emaning is shaky enough that pull 1/3 and I trend to get things compeltely screwed up
the peson who designed the OU course is invovled in validating the MA: our Leader has had a look at the course and rates it very highly, so should be good.

Lesley it is only recently- Asperger's didn't even exist as a dx until the 90's- but it is possible to ahve severe ASperger's etc: the day someone told me that was a revelation as I was dealing with a son with AS who was incredinly aggressive, stole, self harmed, had diagnosed eating disorders, even tried to poison someone. DS3 will never talk properly- by which I mean he lacks blocks of types of speech, loses it compeltely when scared and is ahrd to understand - and has a low functional age but in all honesty, srnage as it sounds, I could handle ten of ds3 over one ds1. Whcih is a bugger as ds4 seems to be following ds1's developmental pattern, as my bruises testify. Obviosuly there are people with severerly affected functionality and huge behavioural difficulties but as a percentage of people with ASD they are quite low. If I can find my 'interesting research I noted and need to read' journal i will post a link one day to the study showing no difference in experience of behavioural difficulty in people with different diagnoses within the spectrum; obviously how challenging a child is to raise is far more than that- the fear of him ebing abandoned by a disinterested state that we have with ds3 dosn;t exist with ds1 as he will either be a millionaire or in prison by then.

Which I promise isn't to belittle your challenges: it sounds like your child is aprticualrly severely affected and that is really tough. I just struggle with some of the neurotypical literature I come across as that almost wants to stop the labelling which is fine if you can cope, and discharge yourself by all means, but please don't campaign to remove support from the many who do feel they need it IYSWIM.

(Oh Lesley didn;t mean you in alst paragraph LOL- hope YKWIM)

(PS LEsley I always say to anyone with a child with ASD on here that ewhilst I am a parent first anfd foremost I am lucky enough to ahve professional experience and qauls too so am always at the end of an email if you ever want a chat or rant)

Thanks for the ideas people. I don't want to put too many details of someone else on here - apart from anything else I wouldn't be surprised if she's found me on MN and is reading!
But there have been other stresses recently (caring for elderly parent, for example) so it makes sense the transport thing was a last straw especially as I know she has various crisis plans but this situation wasn't covered except under Call X, then Y, then Z etc until someone can tell you what to do.

It's far from catatonia - she's still going to regular appts and travelling and managing self-care, but interaction with people has gone from holding a conversation that admittedly lurches off to random asides and is hard to make sense of if you don't know her well, and looking at your face but never making eye contact, to mostly sitting knitting looking as if looks could kill, no looking at faces at all, and latching onto one word she hears and saying something based on that rather than anything to do with what you were talking about. Suspect failure of audio processing is a factor there too.
Example: Me- We're going to X tomorrow. We could take the train but would be difficult to get the pushchair down the stairs at Victoria. The bus is slower but there's no steps. Which would you prefer?
Her: Trains are long. Like snakes. [sings song about snakes]
Toddler: I want go on train. [joins in snake song]

It's the level of 'quirkiness' that's increased and stayed that way over a few months now, rather than any amazing change. Over the last 10 years there would be fluctuation and bad days or weeks but this has gone on longer, which is why I'm worried. And exasperated, I admit. :(

Really sounds to me like she is overwhealmed. Everyone I know becomes 'more autistic' when under pressure of some sort. Your brain is like an explosion of fireworks, you can actually see your thoughts appearing in your head, here there and everywhere, but you can't quite focus on them or pin them down. You can't sleep because these fireworks go off all night. You're exhausted and don't have the energy to keep up the pretense of being 'normal'.

Because believe me, it's a pretense. Some of us are very good at, but it's not real. I could meet you, look you directly in the eyes and have a normal conversation with you, and you would probably never even realise I was autistic. What you wouldn't know is that I'm not looking at your eyes, I'm focusing on the point between you eyes and counting the seconds till I need to look away to avoid staring. Then tell myself to glance away. Then tell myself to look back at that spot.

At the same time, I'm having a seperate conversation in my head with my autistic self. 'Let her speak. Don't talk too much. Think about how you can ask a question. Don't dominate the conversation. Don't talk about this that or the other. Listen to the tone. Is she interested. Reply what she just said. Was that annoyance? How should I respond. What are you going to say next. Remember that conversation you watched x having last week? How did x stand? What did x do with their hands. OMG I can't remember. What should I do with my hands. Is she looking at them wondering why I'm being weird. etc etc etc'. This happens all the time and it's exhausting. When you're ill or worried you just can't face it. So you withdraw.

Notcitrus, she does sound overwhelmed.
These are just thoughts.
First response to your example, was there?s an awful lot of info in your sentence as well as a choice to be made, and 2 out of 3 of my lot would also phase out or change the focus.
Also sounds like it might be more attractive for her to operate at a cheerful toddler?s level anyway, than be making sensible decisions with you, especially if her parent is ageing and needing her to be responsible, and you?re providing a family atmosphere were you're the ?adult?.

If she?s using all her energy to manage elsewhere, you may be getting the ?It?s safe to stop trying? mode. If that?s the case, it?s an annoying backhanded compliment. She may just be coping with facing up to losing her parent.

Also sounds like she may have had to develop new skills. (as a carer) That can result in loss of other skills elsewhere, which can be perfectly natural, or can be a sign of not coping with the changes/level of responsibility etc.

Many autistic people don?t develop in a linear way, and developmental stages can be misunderstood. Successful development doesn?t automatically equal appearing less autistic, that?s an NT desire, not necessarily an ASD one. What she?s doing may be allowing her to cope.

I?d check she?s eating, drinking and sleeping appropriately. If she?s coping with someone else?s needs she may be forgetting her own which wont help.

Your exasperations understandable, you want your friend ?back?, but you may be telling her you prefer the façade she normally manages, to her, iyswim.

My partner has moderate (i.e. noticeable) autism, and is a fantastic individual, currently pursuing a fantastic career and social life. With the right approach, many things are possible.

I always considered autism a 'difference' of ability rather than a disability, on account that the brain usually compensates for the lack of some skills with hyper-ability in others, even in severe cases.