I'm doing a session on ASD for some trainee social workers......

[jimjamshaslefttheyurt]

Unpaid, so I hope no-one minds me posting here.

I want to try and share real families experiences of ASD and I wondered whether anyone would be willing to contribute something (anonymously - I'll either make some names up or feel free to make up your own).

I'm interested in stories where SW have got it dreadfully wrong (I've found trainees are often interested in these).
But also (and this is the main thing). I have a list of features that may or may not be ASD characteristics from a paper that SWs were asked about wrt ASD - and I want to give them real life examples of some of these. I have plenty of my own but I think it would be more interesting to give examples for different children/adults and from across the spectrum. If anyone has anything they could share I would be really grateful if you could do a quick summary on here. It would also be helpful if you could indicate whether your child has low functioning ASD( hate that term - but will use it here), HFA or AS.

So the features are (From a Preece aand Jordan paper of 2007 in the British Journal of social work)

1. Wants environment the same (an eg of this would be when ds1 wouldn't let us turn the lights off, or freaks when he gets home and my car has moved)
2. Avoids change in daily routine
3. Has obsessions
4. Doesn't understand the feelings of others

5.Overreacts to noise 6.Does not seek the company of others 7.Does not make eye contact

1. Seems distant
2. Engages in stereotypical behaviour

10.Has problems in his/her eating routine 11. Has temper tantrums 12. Has sleeping problems 13. Does not seek physical contact with others 14. Does not get attached to a person 15. Makes slumsy movments 16. Does not have self-care skills 17. Does not play with objects 18. Does not develop speech 19. Presents problems in his her physical appearance and health 20. Has hearing problems 21. Does not have feelings 22. Has hallucinations

Many thanks. These stories will only be used for the one teaching session, not for research and will not be published.

I had some contact with Sw via PAS in the early years. This experience has made me very wary of SW! IMHE Sw are amongst the most likey people on earth to blame parents for their childs difficulties ( yes including autism!)! I think there is a strong dependence on the nurture theory (ie all behaviour disabilities are caused by the enviroment).
We do not need guilt trips and blame - we need support to become the right parents for our childrens unusual needs! So I am very glad that you are doing this JJ!

Ps have met some very understanding SW - but they have tied hands!

Yes and I suppose the assessments and terminology don't help. I don't know if its the same everywhere but when they assessed ds1's needs they used the same form as they would use for a child who was 'at risk' and then his classification at the end placed him as a child 'at high risk in need of immediate help' (or something similar). This was because of his disability, but was the same terminology as they would use for a child who was being abused.

Does anyone think that SS could ever provide what we need in the current set up? Why are there such long delays in dealing with things for example? Would extra staff help? Or is there something more fundamentally wrong?

There seems (from my time working for an allied charity) to be a culture of pass the cases on; its almost an all assessment no intervention job now I think.

We were told the only way to get help was to report ds2 as at risk from ds1 to child protection!!!! Could anyone eally do that to their own (then) 6 year old?

I'm unsure whether it's a lack of funds or a lack of will that underpins the apparent intertia of SS. Are there just too many needy people? Too many old people? Too many people?!

I have heard/read that if a child has to go into foster care, then SS can claim funds off the Govt to deal with that child. But if the money is 'there', then why can it not be used before a child becomes in need of a foster family (e.g. used to provide respite care for the natural family).

The whole ediface of SS seems to be mired in bureaucracy - they have criteria that must be met, funds that must not be spent and all kinds of procedures that seem to get in the way of families being helped. SS also seem to be a self-regulating body and therefore entirely unnacountable.

Another problem with current working practices (in many industries) is that employees no longer use/are encouraged to use their initiative/independent thought; everything must be done by the book, via guidelines or as per procedure. Common sense is not common anymore and rules must be adhered to at all costs.

Trivial example. This morning, I attempted to buy two small items of food at the tobacco counter in Tesco. I was told to pay for the items around the corner at the other tills because the tobacco counter was for cigarettes, small snacks, newspapers, etc only. There was no queue at the tobacco counter and two workers were behind the counter. I left my two items on the counter and walked away without paying.

inertia even

I wonder why there is such a lack of services. Is it not enough money or money being put into unsuitable projects?

I told my SW last time she came round that the playscheme that ds1 could go on once a week during the holiday (6 places a day) needed to be tripled in size, or similar schemes set up. And that there was next to nothing for children like him in the City. She agreed and said that they were aware of that, but nothing ever happens.

Not enough money! There's also no profit to be made from providing the types of services that SN kids/adults or elderly people require.

The 'care in the community' initiative is more about saving money than providing care! I think the majority of tax-payers are not interested in their money being spent on SN holiday schemes and such like.

Is it like this in other countries in Europe/America? I know that in the States, they run SN summer camps, which sounds pretty good.

Interesting question about other countries?
There's such a work ethic in the states (mad work ethic, 2 weeks maternity leave and the like) I wonder if there's more of an expectation that parents of severely disabled children will work.

Here I've noticed that SS don't even seem to consider that I might work (so they give me playscheme dates a week before the summer holidays for example- and then they're half the number they promised -jimjams has to shuffle/apologise to work yet again )

There's no suitable playscheme here; ds1, ds3 and a friends child (GDD, vi, severe asd) were all offeed paces at a playscheme which allowed children to leave as desired. Useless. The other child got a different placement via a charity but we gave up. I think a lot of giving up goes on!.

Yes we were encouraged to use a playscheme without adequate supervision (near a road and river hmm I think not).

So we've discussed the problems and some of the probable reasons....the next obvious question is how can the situation be changed? Given that more and more disabled children are leaving hospital every day/week/year and more and more people are living into their 80s, 90s and beyond, then how are all these future (and current) needs going to be met? It seems that we're going to become a nation of carers, where 70yr olds are looking after their 90yr old parents.

One problem is that there's nothing cohesive about SS; each county seems to run its own empire and each area differs in the services that it offers. If you receive respite in one area but then move elsewhere, then there is no guarantee that respite will be available in the new area. However, people are people; I expect my McDonald's (or B.K) burger to taste the same whether I buy it in Scotland or Surrey!

Until more people find themselves in a caring role, then I think it will be a long time until services ever improve.

I'm working on the questions in Word and will copy and paste when ready!

My DS (9) walks on his toes all the time and he has a sort of springy walk. I was told that is one of the characteristics of AS. Of course the flapping of hands in his early years (gone now).

I have to keep reminding him to "walk properly..."

Anyone familiar with this?

Sorry, late to this. ASD seems to have crept onto dd1's list of diagnoses so should answer really (with the proviso she also has SLD etc.)

1. Wants environment the same : Nope. Barely notices the environment.
2. Avoids change in daily routine: Nope. Went to riding for the disabled for the first time today. No preparation - wouldn't understand - just hauled out of car and onto horse with sensory overloading hat on. Once she'd got over the Hat Incident, she was so chilled she nearly fell asleep on the horse.
3. Has obsessions: Has "fidgets" like playing with her hair, which no power on earth will stop.
4. Doesn't understand the feelings of others: I don't think she understands that other people are "people" like her, let alone that they have feelings.

5.Overreacts to noise: On the contrary. Will sit next to barking dog without noticing it. 6.Does not seek the company of others: will seek out adults who can give her something eg cuddles. Otherwise we can all go hang.

1. Does not make eye contact: depends on state of health. I get the impression it requires concentration. It's rarely "normal" eye contact but I suppose it could fool the uneducated.
2. Seems distant. Again, depends on health. But generally blanks everyone until she needs something.
3. Engages in stereotypical behaviour: Nope.

10.Has problems in his/her eating routine: Randomly eats like horse or refuses food altogether. 11. Has temper tantrums: Nope. 12. Has sleeping problems: intermittently, yes. 13. Does not seek physical contact with others: Craves physical contact above all else. Ideal day spent curled up on your lap, sucking her thumb and snoozing. 14. Does not get attached to a person: Slightly favours familiar adults but would cheerfully transfer that affection to strangers if we disappeared. 15. Makes clumsy movments: Only because she is hemiplegic. 16. Does not have self-care skills: none whatsoever. Cannot feed self with spoon, we've been trying to teach this one for 3 years. 17. Does not play with objects: No play skills at all. 18. Does not develop speech: Quite. No speech. 3 signs, used erratically. No pointing. Screams for what she wants. You guess the problem until you get it right and the screaming stops. 19. Presents problems in his her physical appearance and health: Had poor health as a toddler but improving. Has epilepsy - I believe the co-morbidity is quite high (something like 20%?) 20. Has hearing problems: no 21. Does not have feelings: Has simple but heartfelt emotions. 22. Has hallucinations: How would I know? 23. Hypersensitive: Yes, to hot/cold. Craves heat (licks radiators) loathes cold (cries outside on a spring day)

As someone already mentioned there really is no monetary gain in extending the amount of services offered to SN children.

Whereas extending services to the elderly for example (which are also poor i know) does see some payback, maybe they back charge the elderly person who have to pay for their own care, or extra support in the home does prevent them taking up a very costly residential place.

If there is no increase in the availability of services to children who will feel that burden? Well obviously its us parents, so SS are on to a winner financially if we don't fight for respite.

Also what little respite there is tends only to be there if your child suits whats on offer, they don't look at your child & adapt their services as needed, they expect your child who can't adapt & a family whose entire life is spent comprimising to try to meet their criteria.
Square pegs, round holes!

Interesting thoughts.

I wonder how many of the problems are ASD specific and how many are SS just being hopeless in general. Our local SS has something like no stars (it may have one now) and seems to spend a lot of time firefighting.

I know my Mum had to really kick up a fuss to get SS support when my Grandmother developed dementia (different local authority).

Sooo if you were in charge, what would you do differently??

I'd start by making everyone understand that sometimes inclusion leads to exclusion - and that being able to participate in an activity (eg surfing/cinema) needs a special session, or it doesn't happen at all. Ditto respite (they keep trying to send ds1 to a local mainstream playscheme with a 17 year old minimum wage paid no training at all girl - - I then remind them why this idea is ludicrous totally unsuitable and they say 'oh yes' and try and sneak it past me the next time they see me.

Well, I'd start by creating parity between the out of school services that NT kids can access and those that SN kids can access....there are holiday clubs, Saturday clubs and after-school clubs galore for NT kids but precious few for SN kids. I realise that the Govt has plans for Extended Schools by 2010 but I simply cannot imagine that these plans will see special schools operating between the hours of 8am-6pm!

There should be a dedicated SN holiday club/Saturday club/after-school club set up in every town - perhaps operating from within a special school - so that those parents who need the facilities have the choice to use them or not.

There should also be a dedicated SN nursery in every town. There are 'ordinary' nurseries aplenty so why not SN ones too, with trained staff?

I guess having SN clubs and SN nurseries isn't particularly 'inclusive' but kids like my ds need a highly differentiated environment - he cannot simply be slotted into any old environment!!

dedicated SN facilities would be revenue earning and would provide breaks for parents too.

SN is 'big business', e.g. spaces on SN holiday clubs are snapped up very quickly and there are always cancellation lists - evidence that demand is greater than supply.

I guess if parents of SN kids weren't so busy caring, they could set up such facilities themselves!!

I have been thinking about the cultural problems in ss and I cannot put my finger on it. Its as if theories and rules run the show not good old fashioned commonsense with flexibilty and practicality. I wonder if blaming ss when thing go wrong is at the bottom of it - so staff get demotivated and apathetic and take care to cover their backs. SW who take initiative are probably treated as mavericks and very rapidly get into trouble. That and extreme underfunding!

I've got it! It isn't people/client centre'd!

From what I can see, the problem is not necessarily SWs themselves (some are crap, ours is ineffectual but actually v sound) but middle management. Morale is so low in SW that it loses a lot of good people and has to promote what is left. Our local SS has a tier of middle management formed of those who were hard-hearted enough to stay the course. These guys are measured largely on their ability to hit budget and censored if they notice that budget is insufficient for need. So, paid to say "no". And a more pig-headed bunch of jobsworths you could not imagine.

There is - for instance - a rule here which I expect is universal, which is that panel will not grant money or services until all the free or cheap alternatives they know of have been tried and failed. If they suggest it and you reject it as being unworkable - your problem. Panel will never agree to an alternative. It took us 2 years to get Dom Care because they suggested we get a volunteer Family Link worker instead. For 2 years they tried to find someone who would cope with DD1. Only when they drew a blank would Panel agree to fund Dom Care. Now we knew, and SW knew, that there was no way Family Link would work. But we all had to go through the charade for 2 years because that's the rules, and - importantly - the govt auditor will be measuring SS's performance and handing out those stars largely on the basis of adherence to bloody stupid rules like that.

But all of that won't help the SWs you're training, will it? I think what I would change is that SWs should inform themselves better about the actual impact of conditions - invest half a day with a family in the holidays, for instance, and find out what a lack of respite means - and about the law. It's astonishing how many don't know they are legally obliged to offer DPs as a first resort, for instance. Then at least they can prioritise their cases based on a true understanding of need and entitlement.

I'm going to be out all today, but these are all really interesting points (and manny funnily enough I have been toying with the idea of wondering whether it would be possible to set up some sort of nursery & after care service when this PhD finishes, although the thought of the amount of work it would take makes my eyes water).

Interesting that you have to prove something fails before you can access the next thing. That could potentially be disastrous.

I think your last point is one of my key teaching aims r3- to suspend any preconceived ideas before meeting families and listen to what families are saying about their lives.

'Interesting that you have to prove something fails before you can access the next thing'

We've had to do precisely that this year.

SW (and her mgr, who has never met my ds) recommended and referred us to Family Link in January this year. dh and I both knew it would not work....ho hum...time passes...a foster family are mooted...we take ds for a visit...all hell breaks loose, windows are threatened, trainsets are dismantled, cats are chased....ho hum...time passes....finally, the Family Link coordinators admit defeat and we are referred to the council run respite unit....time passes....still waiting for them to do a home visit....ho hum....

I could bore you with the details of my friend's situation but it wouldn't be fair. Suffice to say that they are still going around the Family Link loop....ho hum...a year has passed....

I think if SS asked for donations from those who could afford them many of us would be willing- I'd happily pay a few quid a week for a uitable club, for example; it might not cover it but would offset it surely? The rugby club for sn kids the boys attend refuses donations but we've all offered ( not SS run).

Also they need tor ealise dx shopuld be only one factor of an assessment: here they don't do AS yet ds1 is much more violent than many more severe kds (reflected in his level of dla): I know davros has commented on the child closest to hers behaviourally (hope i've got this right!) beng AS. Now, forgive me but if you have a violent child you should be able to access help not turned aay because of a wrong label! Lots of parents I know attended a restraint workshop 'i case we need it one day'- we need it NOW but weren't eligible

Also sibling stuff; for the reaons above ds2 was refused the siblig scheme atm ans yet he always has so much more to deal with, esp. with 2 of them. In many ways his behaviour is more challenging in a non-asd /non- violent way, and its purely de to lack of ecognition of his needs

Oh and they need to realise that statemented kids within MS environments still often need the support ohter SN kids need (I know they don't get it withr)- so if services were set up, they'd need access too- eg after school clubs. There's an awful lot of kids like my ds3 who will end up in a special school eventually but are currently coasting alone on a 'well its nice for them to integrate' LEA spiel but are no more likely to access standard services than other SN kids, iyswim? It was qute a when we visited a local SN uni and found that Ds3 would still have been the most severe kid even there- its obv. he'd be a hard one to place whatever which is possible the issue?

Also- there'd be a lot less famillies breaking own and requiring help / struggling with finances if e could work which requires access to childcare. Many of us live in enforced poverty due to a lac of chidlcare and that's simply not on.