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

78 replies

jimjamshaslefttheyurt · 12/10/2008 15:16

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 These stories will only be used for the one teaching session, not for research and will not be published.

OP posts:
MannyMoeAndJack · 13/10/2008 09:20

Now this is timely....my friend (whose ds is PMLD) has been waiting for over a year to begin accessing overnight respite care. My friend and her dh recently wrote to complain and have just had a reply back from SS saying, 'we're sorry that you felt the need to complain but the delay is out of our hands....blah blah'

Note that the apology is not for the fact that the respite is taking so long...

You couldn't make it up, you really couldn't bu sadly, this is all par for the SS course.

sphil · 13/10/2008 09:37

Not SS Jimjams but when we were in hospital with DS2 last week one of the junior doctors asked us what autism was .

bonkerz · 13/10/2008 09:50

DS has Atypical Autism and Oppositional defiant disorder and is 8.

  1. Wants environment the same : DS likes routine ie lunch at same time and he likes to know whats happening in the day and that needs to be stuck to, he doesnt do impulse!
  2. Avoids change in daily routine: change in routine causes huge problems!
  3. Has obsessions: DS likes certain things to point of obsession ie sma etv programmes BUT he is able to function without the obsessions taking over IYKWIM
  4. Doesn't understand the feelings of others: no empathy at all and also struggles to recognise own emotions so needs to be told ie DS i think you may be feeling a little cross do you want some time out?
5.Overreacts to noise: DS is hypersensitive to noise and will become uncooperative if area is noisy etc 6.Does not seek the company of others: DS seeks adult attention alot but cannot do child attention he would rather play alone! 7.Does not make eye contact: this isnt so much of a problem for DS although it does need prompting if he is having a bad time!
  1. Seems distant: Only when he is cross and having a melt down does this happen, you can almost see the light go out of his eyes!
  2. Engages in stereotypical behaviour: not really
10.Has problems in his/her eating routine: no problems at all 11. Has temper tantrums: huge melt downs which mean he needs restraining daily to stop him hurting himself 12. Has sleeping problems: wakes 2-3 times a night and wets the bed 13. Does not seek physical contact with others: physical contact is all on his terms 14. Does not get attached to a person: DS develops very close bonds with adults to the point of exclusion of others 15. Makes slumsy movments: no 16. Does not have self-care skills: cannot bath himself, wipe his bum etc but can dress himself 17. Does not play with objects: does not do toys, enjoys structured play ie computer/board games with close adult contact 18. Does not develop speech: has very good vocabulary but possible segmantic pragmatic issues! Says lots but doesnt understand what he says! 19. Presents problems in his her physical appearance and health: DS looks perfectcly normal and has brilliant health! 20. Has hearing problems: no 21. Does not have feelings: does not recognise his own emotions at all. 22. Has hallucinations: no
jimjamshaslefttheyurt · 13/10/2008 09:56

Thanks again all.

Manny that's really interesting as I could have written your post. From first request to receiving dps took over year, the DFG took almost 2 years (and 4 broken windows) and in fact isn't completed yet. I've noticed they're very quick at responding when something goes wrong (eg I put my complaint about the DFG, or my complaint about ending up bruised because they cut my help this summer), but that response is usually platitudes, it doesn't actually lead to anything useful or helpful. And if it does it takes over a year to even begin to receive it.

And they offer stuff that is blatantly unsuitable/unsafe as that's all they have to offer!

OP posts:
jimjamshaslefttheyurt · 13/10/2008 09:57

I remember the thread. I'll have a look and ask permission if I want to 'pinch' anyones story from there, I won't use anything without asking.

OP posts:
pReachyTheExorcist · 13/10/2008 10:02

Won't do for ds3 as although we know what it is not dx'd yet (PLEASE mention the farking eye contact / SOH to them- that really is all it comes down to now apparently!)

So, ds1, AS/ HFA

  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)Completely the reverse: if we took his bed out and replaced it ith a barbie one that played I will Survice and had flashing klights on he wouldn't register it.
  1. Avoids change in daily routine There are certain things he really struggles with- we cant go out after school for example. Often though he'll get on with it but its the resultant fall out after that indicates where the issue has been iyswim
  1. Has obsessions yes, we've had the balsted Piggy obsessin for years. They get validated in school by kids who think its funny which I think solifies it.
  1. Doesn't understand the feelings of others He tries to and thinks he does, but a lot of it is learned; for examle I've taught him that the way he feels when he is hurt is 'sad' ad when ther people cry that's how they feel too, but the entire instinctive thing is absent and he could easily chat to me for ages not realising I was crying or whatever

5.Overreacts to noise Yes, overlaods him

6.Does not seek the company of others AS he is AS he tries to with usual failure, but he increasingly spends time alone in his room, and enjoys this

7.Does not make eye contact he does

  1. Seems distant yes, although the absences he had when smaller are not so present now
  1. Engages in stereotypical behaviour do you mean flapping etc? god yes, loads of it

10.Has problems in his/her eating routine really ahrd to get drinks into him, much ahrder than food, has food texture issues which is fortuantely not a big deal at home becuase so do I and I plan our meals, so...

  1. Has temper tantrums Well, meltdowns. Atomic ones, takes 3 adults to retrain him.

  2. Has sleeping problems oh yeah. Feels sleep is unecessary and irrelevant to him.

  3. Does not seek physical contact with others He des, but either aggressive or with a non-challenging person (me, the baby, ds3)

  4. Does not get attached to a person He does.

  5. Makes slumsy movments Yes he does, but his vision isn't A1 so how much is that? he's extremely good at gym though which is a bit of a confusion. He was assessd for dyspraxia and cleared for that, which we knew as his clumsiness links in to overload sits where he zones a bit iyswim

  6. Does not have self-care skills Limited, knows things like feeding etc but wouldnt wash, take himself to bed etc witout us there

  7. Does not play with objects He does. He likes lego etc, its imaginative play that is absent.

  8. Does not develop speech At 6 his apeech was assessed at age 16 - 21. He has semantic pragmatic issues though, and its been noted by school they rarely hear him talk and they disputed the assessment but its just he only converses if its a topic that interests him, he feels engaged and confident.

  9. Presents problems in his her physical appearance and health Not at all, very ehalthy and (apart from his teeth which are awful and were broken at school) a stunningly attractive chap, all curls and blue eyes

  10. Has hearing problems Had lots of infections as a kid and some people thought he did but he was zoning out.

  11. Does not have feelingsOf course he does, he's a child not a statue. Can't express them too well is all.

  12. Has hallucinations No.

pReachyTheExorcist · 13/10/2008 10:06

Oha nd the SW ting- SOS!SEN ahve told us that the way we were treated over our last assessments breached legal rules and we could take action. They carried out core assessments of the boys but failed to for us- and it was my needs we were worried about (was when I was heavily PG with SPD). Also, striking us off the caseload for not accepting inappropriate help (placing ds1, who as you know is extemelya ggressive, lacking in empathy etc, in a regular childminders once a week with small children)- that's not allowed apparently.

I won't dal with SW any more, its a waste of my energies and jst gets my hopes up that we might get help. They refuse to acknowledge ds3's neds and 'forget' repeatedly to place him on the index, and apparently their blanket policy on non helping with AS is illegal but I don't have the energy to fight atm.

amber32002 · 13/10/2008 10:24

Social services: Close friend of mine has two lads with ASD. Even when one of them was arrested for drugs stuff and expelled from school because of the total lack of help with his ASD, all SS said was that she needed parenting classes. He was offered only some basic short term counselling.

Me? Had to giggle when SS sent me through paperwork for my meeting to help advise their HQ on autism. It was filled with metaphors that the average person with an ASD would have found utterly baffling, and they provided me with no clues on the building, its layout, photos of anyone I was to meet, etc. All of this is basic stuff if helping those with an ASD.

coppertop · 13/10/2008 10:28

Ds2 has a dx of AS:

  1. Wants environment the same

Not too bothered by this but can spot even the tiniest change in his environment, eg something put back in the wrong place.

  1. Avoids change in daily routine

Yes. Change seems to throw him for a while.

  1. Has obsessions

Yes. Very quickly becomes an expert on a particular topic and talks about it endlessly.

  1. Doesn't understand the feelings of others

Has improved lately but still finds it difficult.

5.Overreacts to noise

Yes. Uses headphones to filter out noise.

6.Does not seek the company of others

Often does.

7.Does not make eye contact

Eye contact pretty good.

  1. Seems distant

Yes.

  1. Engages in stereotypical behaviour

Likes to spin himself round a lot. Flicks his fingers near his eyes especially at the cinema.

10.Has problems in his/her eating routine

Very limited diet.

  1. Has temper tantrums

Yes. Complete meltdowns, complete with hitting himself.

  1. Has sleeping problems

Wakes a lot. Sleep improved with melatonin.

  1. Does not seek physical contact with others

At school yes. Opposite at home. Lots of sensory-seeking with bear hugs, squeezing etc.

  1. Does not get attached to a person

Can get overly attached to a particular person.

  1. Makes slumsy movments

No.

  1. Does not have self-care skills

Does most things himself but toileting is the big problem.

  1. Does not play with objects

Play skills much better now.

  1. Does not develop speech

Spoken language is very good. Problems with receptive language.

  1. Presents problems in his her physical appearance and health

No.

  1. Has hearing problems

Has over-sensitive hearing.

  1. Does not have feelings

Doesn't apply to ds2.

  1. Has hallucinations

No.

Ds1 has dx of HFA:

  1. Wants environment the same

No.

  1. Avoids change in daily routine

Yes.

  1. Has obsessions

Yes. Talks constantly about latest obsession and reads a lot about it.

  1. Doesn't understand the feelings of others

Tries to but finds it difficult.

5.Overreacts to noise

Yes. Uses headphones to filter out noise.

6.Does not seek the company of others

Prefers to be by himself.

7.Does not make eye contact

Limited.

  1. Seems distant

Yes.

  1. Engages in stereotypical behaviour

Not so much these days,

10.Has problems in his/her eating routine

Limited diet.

  1. Has temper tantrums

Yes.

  1. Has sleeping problems

Doesn't need much sleep.

  1. Does not seek physical contact with others

Avoids it wherever possible.

  1. Does not get attached to a person

Only his parents and siblings.

  1. Makes slumsy movments

Yes. Lots of motor skills problems.

  1. Does not have self-care skills

Can do most things. Still mainly eats with fingers though.

  1. Does not play with objects

Not much interest but better than he used to be.

  1. Does not develop speech

Was a late talker but now has very good language skills. Sounds more like an adult than a child.

  1. Presents problems in his her physical appearance and health

No.

  1. Has hearing problems

Over-sensitive hearing.

  1. Does not have feelings

Has feelings.

  1. Has hallucinations

No.

bullet123 · 13/10/2008 11:13

I forgot/ didn't realise to say that if something is upsetting me or making me feel stressful or bothering me I react by withdrawing into myself and finding speech especially very very difficult. I have tantrums usually when something physically has gone wrong, eg shoelaces have come undone again, a cup has fallen off the drainer. They tend to be shortlived.
Another thing that may or may not be relevant is that I frequently find there is a block between movements my mind tells me to do and my body refuses to do. Eg throwing something frequently results in my arm swinging back and forth whilst my hand refuses to let go of the object. Waving in reply to someone or looking at something someone has pointed out, I'll understand perfectly what to do, but it's as though I am thinking so much about doing the actions that my brain doesn't start thinking about moving the body parts relevant to doing the actions.

MannyMoeAndJack · 13/10/2008 13:03

Here is a late entry:

24: Challenging Behaviours
my ds has plenty of these - mainly centred around the fact that he has a very poor understanding of the relationship between cause and effect. 'Setting boundaries' (if I had a pound for every time I've been told to do this...) does not really work for my ds - rather the environment has to be adjusted to fit him, rather than the other way around. ds also has a reduced sense of danger and a very poor memory - these two factors both affect his behaviours.

Good luck with the SS trainees - let us know how it goes!

jimjamshaslefttheyurt · 13/10/2008 13:46

That's a good one, I've had some stupid comments from SW's about challenging behaviours,

I'm meeting with my supervisor tomorrow to plan the session, but am not actually presenting it for another couple of weeks so plenty of time to throw in other thoughts....

I find that movement stuff really interesting bullet. It's such neglected area of research.

OP posts:
amber32002 · 13/10/2008 13:59

The thing that helped one of my groups to understand the way my mind works is the 'electrical sockets' way of explaining it, and it sounds like it applies to you too, Bullet123?

Most people's minds have lots of electric sockets they can 'plug' the incoming information into. One for sight, one for movement, one for sound, one for smells, one for taste, etc. I think we only get one socket, so we have to put SO much energy into plugging things in and unplugging them again, and can only choose to really concentrate on one or two things which are struggling to get our attention. If we try to plug in too many at once, the wiring overheats and we either have a mini tantrum or the fuse blows and we just stop for a while until it re-sets.

So if we're trying to do up a shoelace, we're trying to use sight and touch/movement, which is two 'plugs' trying to fit in the same socket at the same time, and the wiring's overheating. Then if someone asks us a question as well, that's a sure way to cause a meltdown of wiring!

silverfrog · 13/10/2008 14:52

dd1 is 4, nad dx'd ASD. No idea where she is severity-wise. She has a severe speech delay, and can at times present as NT if the environment allows, but at other times she is very clearly autistic.

  1. Wants environment the same

No. She is very happy to go anywhre/do anything, as long as a familiar adult is with her, and preferably gives her an explanation. She did use to have a meltdown if we changed eg her toothbrush (try putting on your internet order that the toothbrush must be green!) but not so anymore.

  1. Avoids change in daily routine

Happy to change, where necessary. We live quite a routine life (eg toddler group every Thurs) but if we have to change (went to the hospital last thurs instead of toddler group, have ABA consultant this Thurs instead of toddler group) then there is no major problem. she may need a lot of reminding ove rthe morning why we aren't there, but happily accepts the change.

  1. Has obsessions

Not really. She has a few noises she makes and wants repeated, but you can get away with not doing them. She also holds books and small objects to her nose as though smelling them(but she isn't) - this started with some small magnets that did smell, and ha carried on as a reflex habit, i think.

  1. Doesn't understand the feelings of others

gets happy and sad, but little else. She knows if dd2 is upset (and also is affected all the more so if it is her fault) and will occasionally give her something to make her better - dd2's comfort toy eg. she will laugh along with you at a joke, and share enjoyment

5.Overreacts to noise

Yes. she is sensitive to some noises (crying especially) and is wary when her envionment is noisy. She covers her ears if it gets too loud (but also does when unsure), but there is no massive overreaction.

6.Does not seek the company of others

constantly seeks out company and attention form familiar adults (mostly family, but she likes her SALT and will keep coming back to attract attention, and also her keyworker at pre-school, ABA consultant and tutor), and has begun to try to get dd2's attention (gives her a PECS card and tells her what the picture is/hands over a book or toy - usually when dd2 doesn't want it, though!) She has started randomly saying hello to people in shops when she is bored, as well.

7.Does not make eye contact

makes very good eye contact with family and people well known to her. her strength of eye contact is more related to whatis happening than eye-contact issues. If you are focusing on her, she gives very good eye contact. If it is a more general situation (at the shops, large family gathering, etc) then she is not so good - maybe finds it hard to switch between talking to you/not talking to you?

  1. Seems distant

if not being actively engaged, she can drift off a bit, but usuallycomes back every couple of minutes to get you to read a book/sing a song.

  1. Engages in stereotypical behaviour

she does like bouncing off chairs, and pacing/running up and down, but she can be distracted away form these.

10.Has problems in his/her eating routine

has always had a strong preference for routine at mealtimes, but until recently has been easy to cater for. would eat several different main courses, and I could always vary what was in them as long as the overall look was similar (eg spag bol with any veg in it, curry with different meats,e tc). Now a complete nightmare - not eating anything except snacks. Has huge issues with drinking when younger, but seems to be ok for now - will drink juice and recently a couple of different innocent smoothies.

  1. Has temper tantrums

never.

  1. Has sleeping problems

no. she can take a while to settle, but then sleeps thorugh until morning (usually asleep by 9pm atthe very latest, through until 7am at the earliest)

  1. Does not seek physical contact with others

always wants a cuddle, or to hold hands when walking. if we have to wait somewhere (not always possible, but when it is...) she will be found leaning on me, glued to my leg.

  1. Does not get attached to a person

is incredibly attached to me - her biggest problems are with leaving me/me leaving her. she does go into pre-school happily, though, so as long as it is a regular leavetaking she is fine. she ahs never got over dh going back to work when she was little (dh was at home form when she was 5 months, to about 17 months ish, and she totally preferred him in that time) and now finds it hard to relax with him at weekends (does not see him in the week) because she knows he is going away again... has good relations with pre-school workers, and her ABA tutor and consultnt 9asks for him all the time, but has only seen him 4 ties so far!)

  1. Makes slumsy movments

clumsy? yes. quite often trips over her own feet, and can bump into furniture etc.

  1. Does not have self-care skills

yes, she has no self-care skills. can help getting dressed, but would not know where to start if left alone. still in nappies, and obliges with teeth cleaning etc, but again, it has not ocurred ot her to do it herself.

  1. Does not play with objects

will play with some toys well - shape sorters/inset puzzles. likes magnets - so blocks, and even magnetic books - she will put animals in the right place on the farm etc. can play ball well, and is beginning to play a version of coits. has apparently started feeding dolls at pre-school, but I have yet to witness this.

  1. Does not develop speech

she has a severe speech delay. started speaking jargon from about 18 months, but only really intelligable to me - dh struggled (although english not his native language, so I think that hindered him). clear words form 2.4 ish, then single words came thick and fast. has a huge vocab. can learn entire books/songs, even quite lengthy ones. has quite a number of learned phrases which she uses to get by at pre-school, and is beginning to put words together on her own - usually by changing learned phrases, so "here we are at home" has recently expanded to "here we are at XXXX (pre-school)" and "here we are at the shops", and, just yesterday (an hour after we left home, which waswhen we last mentioned where we were going) "here we are at the zoo"

  1. Presents problems in his her physical appearance and health

she did have a few ear infections when younger, and has some gut issues, but nothing major.

  1. Has hearing problems

it was thought she did when younger, but she doesn't. she just chooses not to hear sometimes.

  1. Does not have feelings

no. she has clear emotions, but cannot always articulate them. recently, she was stroppy all afternoon with her ABA tutor (tutor had not been at pre-school on the Wednesday afternoon, when the previous week she had). I twigged this might be the cause, and said to her "dd1, it is not X's fault she wasn't at pre-school. it is ok to be cross, but she was not meant to be there today. she has come to play with you now instead. within a couple of minutes, dd1 has gone across with a book for her tutor to ead to her (had refused to stay in the room with her until that point). she shows emotions readily if she is hurt or happy.

  1. Has hallucinations

no.

jimjamshaslefttheyurt · 13/10/2008 14:53

That's a good way of describing it amber. I think for LF autism is seems that often the child/adult can't do the necessary unplugging/plugging themselves very easily so struggles to respond on demand on time.

OP posts:
Philomytha · 13/10/2008 15:50

Haven't had anything to do with SS yet, so I can't help with stories of the good and bad, but I can tell you about DS, who's almost 3 and recently dxed with ASD. No idea where he is on the spectrum.

  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
Neither of these. In fact the first paed we saw said DS couldn't be autistic because he couldn't care less what our daily routine is and doesn't mind where we go or what we do.
  1. Has obsessions
Yep. Current one is drills. Everything he picks up is a drill, and he pokes it at the wall and makes drill noises. Also turning taps on and off.
  1. Doesn't understand the feelings of others
He only understands really exaggerated visible emotions. If a child is jumping up and down squealing and giggling, DS will catch on, but he wouldn't notice a child falling down and looking sad.

5.Overreacts to noise
No, DS underreacts and will walk past pneumatic drills without looking around. He finally managed to pass a hearing test, so no problems there. He likes music and has perfect pitch.

6.Does not seek the company of others
He doesn't really seem to mind whether other people are around or not. Occasionally he'll try to join in another child's play, but in a very 'butterfly' way - he'll look interested, start to go over, but halfway there he'll wander off again.

7.Does not make eye contact
He makes eye contact on his terms - ie when he wants something - but not if you want him to look at you.

  1. Seems distant
I guess so. 'In a world of his own' is the typical phrase we use.
  1. Engages in stereotypical behaviour
No, not really - another reason the paed didn't want to dx ASD.

10.Has problems in his/her eating routine
Started a thread on this recently and concluded that DS is no fussier than the average NT child.

  1. Has temper tantrums
    Never.

  2. Has sleeping problems
    Yep, but not too severe (ie he wakes in the night but goes back to sleep quite easily)

  3. Does not seek physical contact with others
    No, he adores physical contact, which he seems to understand much better than any other kind of contact. He goes up to other children and hugs them sometimes.

  4. Does not get attached to a person
    He never had separation anxiety as a baby, but it's recently come on and he gets horribly upset at the thought of separation from me.

  5. Makes slumsy movments
    He sometimes seems to need to watch his feet as he walks to avoid tripping over, but he has good balance otherwise, climbs well and also has good fine motor control.

  6. Does not have self-care skills
    He's a bit behind his NT peers, but not hugely so. Good at self-feeding, not potty trained, and struggles with dressing. Or more precisely, he is capable of both undressing and dressing himself fully, but he doesn't seem able to do this when requested. If he wants to, he can do it, but he can't/won't do it because I want him to.

  7. Does not play with objects
    He doesn't play in a typical way except with quite simple toys. Pushing a train around a toy track is a bit too complicated for him.

  8. Does not develop speech
    He's just learning a few words now, mostly echolalic. We're optimistic that he will get at least some useful spoken language, but it's not following the typical route.

pReachyTheExorcist · 13/10/2008 16:09

Decided to do for ds3 to clarify things for me- feel free to ignore LOL, you knw his history

  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) That seems to vary, sometimes he's oblivious (his nickname is Mr Oblivious) but sometimes he gets really, really anxious- think there's a link to overloads here
  1. Avoids change in daily routine Prefers to keep things the same but doesn't avoid, doesn't really initiate anything though, avoidance would be too proactive iykwim
  1. Has obsessions yes. The PC issue is a big probl;em atm, with te Wii coming in second.
  1. Doesn't understand the feelings of others
Don't know- how can I tell? Doesn't react to crying etc unless its really loud in which case (and its a guess) its the noise that bothers him

5.Overreacts to noise sometimes does the ahnds over ears thing, ad can get upset OTOH was completely oblivious to a klaxon in tests

6.Does not seek the company of others sort of chases people randomly and wants to be in my bed but not much more- unless its in his routine

7.Does not make eye contact it's 50/50 with the eye contact

  1. Seems distant yes, most of the time
  1. Engages in stereotypical behaviour yes- flapping, stimming, the whole lot

10.Has problems in his/her eating routine very limited protein and drinks intake, has same divided plate / cutlery and a routine of where to sit at table that varies during the day and is inflexible. Eating is always accompanied by attempts to get to the PC. both dh and I beleive he would starve if left to himself.

  1. Has temper tantrums Didn't, but has had 2 full meltdowns this weekend.

  2. Has sleeping problems as immeiately above - hard to settle and wanders, nothing major

  3. Does not seek physical contact with others does, bt strictly within his own guideline

  4. Does not get attached to a person people THINK he is. he's not. PC and the wii and the rest of us could go blow as far as he is concerned.

  5. Makes slumsy movments Yes, OT delivers co-ordination skills via school, very baby like

  6. Does not have self-care skills Again yes, will sit in his own urine if he wets at the PC. Can take himself to a potty on a routine if not on PC

  7. Does not play with objects Does, but p[redominanatly baby toys and in a repetitive fashion

  8. Does not develop speech Yes, but very late and with big problems

  9. Presents problems in his her physical appearance and healthI thnk by looking you can tell aomething is up, but thats his lack of body language perhaps? hard to say.

  10. Has hearing problems as with ds1, failed every hearing test for years until they found he CAN hear, justt DIN'T, if that makes sense?

  11. Does not have feelings Of course he does, but they're not show and he doesn't have moods

  12. Has hallucinations Not that am aware of

jellyhead · 13/10/2008 16:11

This reply has been deleted

Message withdrawn at poster's request.

Niecie · 13/10/2008 16:13

My DS1 has a dx of mild AS. He is 8 yrs.

  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) - not really. DS doesn't want to turn his light off at night but then nor does DS2 and he is entirely NT.
  1. Avoids change in daily routine - not bothered but likes to know exactly what is happening and when. You can change the routine but you have to change the timetable with it.
  1. Has obsessions - yes but not to the exclusion of all else
  1. Doesn't understand the feelings of others - yes he does understand - I think he just choses to ignore them sometimes.

5.Overreacts to noise - used to a bit but not now.

6.Does not seek the company of others - can be quite happy alone but does seek company if he needs it. Like me actually and I am NT!

7.Does not make eye contact - yes he does.

  1. Seems distant - Can do if not really interested. Can't pretend to be interested for the sake of politeness.
  1. Engages in stereotypical behaviour - yep, hand flapping and pacing but nowhere near as bad as it was.

10.Has problems in his/her eating routine - went off all fruit and most veggies at the age of 3, around the time we began to wonder about his condition. Apart from that he is fine.

  1. Has temper tantrums - a bit but don't all 8 yr olds?

  2. Has sleeping problems - doesn't seem to need much sleep.

  3. Does not seek physical contact with others - no he comes looking for it. Gets cross if DS2 gets a cuddle and he doesn't.

  4. Does not get attached to a person - Not true - attached to lots of people.

  5. Makes slumsy movments - his dyspraxia is far more of a problem than his AS imo. Upper body strength awful and bilateral integration a particular problem.

  6. Does not have self-care skills - very slow to learn but getting there.

  7. Does not play with objects - not a great one for playing, no.

  8. Does not develop speech - talked really well from the age of 2, huge vocab, correctly used. Has echolalia but repeats himself not other people.

  9. Presents problems in his her physical appearance and health. No

  10. Has hearing problems - No full hearing check as part of his dx.

  11. Does not have feelings - Of course he has feelings. We know about them when he isn't happy or when he is come to that!

  12. Has hallucinations- Not that I know of.

anonandlikeit · 13/10/2008 16:58

Hi Jimjams

DS has ASD. OCD learning difficulties & mild CP.

Much of what has been written already is so familiar although the problems i have had with gaining support is that ds2 is not generally seen as challenging enough.
Because he is not aggresive or a runner people tend to underestimate the impact of him & how he reacts to any triggers on the rest of the family especially his brother.
SS tend IME to look for stereotypical challenging behaviour & need to look a at the individual rather than the text books.
So for example he won't attack us BUT if his routine has changed it may be that he refuses to come out of the hallway (his safe space) so he paces up & down endlessly sobbing for hours.
Not only distressing for him but for us all to watch. (i missed most of the X factor on Saturday because of this)
We can't go as a family to watch ds1 play football as ds2 can't cope with the open space, the wind or the very small crowd of supporters.
We can't do the weekly shop with ds2, can't push a trolley & a major buggy.

DS2 has obsessions but they tend not to be toys, he loves blue tac & sellotape, we've had tears at bedtime before now because he has lost his roll of sellotape.
He really struggles to cope with change but rather than tantrums he becomes distressed, withdrawn, stops eating & builds more OCD behaviours in to the remainder of his day so the familiar things become more predictable.

In order to care for ds2 you need to get to really know him.
It is also very hard for ds2 to let anyone outside of his Dad & I care for him thats why its so important that SS try whenever possible to ensure that our children get continuity of care.
Its no good saying to us "can't you just get a babysitter"

pReachyTheExorcist · 13/10/2008 19:11

Oh and another thing for SS (sorry)

telling people to contact NAS in case they have a befriender is no good, ds1 has been on the waiting list over 2 years now and they are a charity; SS are the ones paid to do it.

jimjamshaslefttheyurt · 13/10/2008 19:26

anon did SS say 'can't you just get a babysitter'

(I do know someone they said that to btw!)

OP posts:
anonandlikeit · 13/10/2008 19:55

I never actually got as far as S Services myself, they never bothered to speak to me they just asked the opinion of the early years area SENCO who had never met ds2, but the conversation was in front of the payschool SENCO who relayed it to me.

I just received a letter that said following a request from the CDC family co-ordinator to assess ds2 & following discussions with other agencies it was felt that ds2 did not meet the criteria for Social Services involvement.

DS2 is nearly 6 now & I have never had any involvement with S Service, never received any respite or support whatsoever.

TBH its just a fight that i haven't had in me.

jimjamshaslefttheyurt · 13/10/2008 20:31

I know what you mean. I complained about SS lack of support over the summer in September. The SW said it was 'a shame' that I hadn't contacted them earlier, but it was a fight I didn't have in me at the time (phone calls not returned, letters unanswered, just the basic stuff - never mind actually arguing my case!)

OP posts:
anonandlikeit · 13/10/2008 20:39

I think for me I see this as a fight for something I need rather than ds2, although i know we would all benefit.
But as you know when you have a child with sn fighting for what your child needs is all too familiar, so I guess I save my energy for the fights that will directly help him.

Not being a martyr its just a fact of life, just not enough hours in the day.