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

(79 Posts)
jimjamshaslefttheyurt Sun 12-Oct-08 15:16:08

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(hmm 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
8. Seems distant
9. 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 These stories will only be used for the one teaching session, not for research and will not be published.

Widemouthfrog Sun 12-Oct-08 16:46:52

Hi Jimjams,

I few comments to each point. Hope this helps. My DS is 5 with a diagnosis of AS/HFA (it gets changed depending who we talk to) and epilepsy

1. Wants environment the same.
Not too bad with this one

2. Avoids change in daily routine
Must have breakfast in same order, will only walk one route to school. If anything changes he melts down and the routine has to be started from the beginning.

3. Has obsessions
Disney 'Cars'. he is obsessed with collecting every diecast vehicle he can. Will play endlessly pushing the cars backwards and forwards watching the wheels.

4. Doesn't understand the feelings of others
We have to explain other peoples reactions - why they are happy or sad. He never understands anger and what has triggered it. He often wrongly assumes it is him when I am angry with younger brother.

5.Overreacts to noise
Fans and handriers in public toilets frighten him. he is terrified of fireworks and the school bell.

6.Does not seek the company of others
He likes to play alone and will become angry if someone tries to join him.

7.Does not make eye contact
DS makes eye contact beut it is qualitatively different and tends to be brief. He does not look at you when he talks.

8. Seems distant
He can often be 'zoned out' and apparently in another world. He is often unaware of what is happeninhg around him

9. Engages in stereotypical behaviour
We get lots of hand-flapping in front of his face and complex whole body movements when he is excited or stressed.

10.Has problems in his/her eating routine
Food is very ritualistic, has to be eaten in a set order and is limited to a list of familiar foods - particularly red foods. If food branding is changed he will refuse to eat it.

11. Has temper tantrums
Usually when tired or he feels he has lost control. These can be long (more than 1hr) and aggressive involving punching, kicking and screaming. They usually end in emotional exhaustion and sleep and can be shortened using a weighted blanket to calm him down.

12. Has sleeping problems
Sleep is a rigid 10 hours regardles of how tired he is. If he falls asleep early he wil wake early - exactly 10hrs later. He is frequently exhausted but will not sleep longer.

13. Does not seek physical contact with others
This is not always the case, but contact has to be on his terms.

14. Does not get attached to a person
The only people he seems attached to is mum and dad - he is indifferent to his brother and other close friends and relatives, to the point of rudeness.

15. Makes slumsy movments
very poor awarenes of his body position and can be awkward and clumsy. Poor balance and cannot ride a bike.

16. Does not have self-care skills
These have to be enforced. he will not wash, brush teeth or take care of personal hygiene without insistance - this often leads to tantrums.

17. Does not play with objects
He plays with objects such as towels, blankets, flags. Anything he can flap and wrap around himself. He rarely plays with toys in the way they are intended. Play is at a very sensory level.

18. Does not develop speech
Speech developed at a young age but was qualitatively different. very clear with good vocabulary but poor understanding. Lots of speech was learnt by rote from books and DVDs

19. Presents problems in his her physical appearance and health
???

20. Has hearing problems
No

21. Does not have feelings
Of course he has - why else does he get so upset and go into meltdown!

22. Has hallucinations
No.

jimjamshaslefttheyurt Sun 12-Oct-08 17:53:10

Thank you Marne. That's really helpful. Much appreciated.

I think some of these are not features of ASD (eg the hallucinations/feelings) It's just some SW thought they were! I'll add a few more 'false' ones as well in the class.

I should have said please feel free to only answer 1 or 2 if there are only some that are relevant (and save some time). I'm just going to piece together some examples and then ask them to think about ways that SS might be able to lessen the impact on families.

jimjamshaslefttheyurt Sun 12-Oct-08 17:54:44

Sorry not Marne! Widemouthedfrog, Not sure where Marne came from... <scratches head emoticon>

misscutandstick Sun 12-Oct-08 18:07:30

The only ones i can add are: uses different parts of body to carry out a task than you would expect (ie DS5 uses his thumb as an average person would use his forefinger, and often 'feels' things with his feet)he is still orally fixated at 2.5yrs. Although he now does the 'flap' thing quite frequently (toewalking too) he used to hold his arms rigid at a very peculiar angle. He has also for a long time (not continuously!) looked out of the corners of his eyes rather than straight forward in times of stress/excitement.

Widemouthfrog Sun 12-Oct-08 18:15:11

LOL at name change. You can tell the kids are at the park with DH - I wouldn't have answered all the points if they were here - DS2 would have retyped them for me grin.

jimjamshaslefttheyurt Sun 12-Oct-08 18:18:26

sphil Sun 12-Oct-08 20:23:52

Do you want me to do this JJ- or do you know enough about DS2 already? grin

ALMummy Sun 12-Oct-08 20:30:20

1. Environment.
Ok with this but will tend to tantrum about half way through a holiday or weekend away as the stress of everything being different seems to build up.

2. Daily Routine.
This not too bad either but not really tested as we tend to keep to one pretty much anyway.

3. Another Disney Cars obsession here. He watches little clips on YouTube about them all day and collects them. We go to the Disney shop weekly to look for them, would be daily if he had his way.

4. Understanding emotions.
Sometimes laughs when people hurt themselves and we have to explain why that is not the right thing. He is pretty good if you cry or are sad though, will notice and try to comfort.

5. Overreacts to noise
Again hand dryers and also road sweepers and supermarket sweepers.

6. Does not like company of others.
Does not seek it. If I go to his room when he is playing he will often say "Ok I will play on my own again now", meaning "Go away Mum!". Loves his little sister to be with him though.

7. Eye contact
Yes with family, not with people he doesnt know.

8. Seems distant.
Not with Family and people he is close too but have seen it with people he doesnt know that well.

9. Stereotypical behaviour
Not much. Butts his head against me when cuddling.

10. Eating
Very restricted. The Beige diet I call it. Likes Pizza and would eat that every single night if he could. If I try to get him to eat fruit or veg he actually looks really scared of them.

11. Temper tantrums.
Yes, if we cant go to the disney shop, or after being away for the weekend at his Grandparents, at the end of the week when the stress of school has built up. Anything really. Usually can be talked down but occasionally we will have a day or two of rollercoaster meltdowns. I can always tell because he will wake up with a flush in his cheeks but otherwise pale and I always think "Uh Oh".

12. Sleeping Problems.
Always been a great sleeper.

13. Physical Contact.
Rarely but is fab when he does. Sometimes though when you cuddle him he is obviously just putting up with it and especially with aunts or his grandparents he will cuddle but his body is turned away trying to get away as soon as possible.

14. Does not get attached to a person.
Extremely attached to family members and various teachers, including his SENCO thankfully.

15. Clumsy movements.
Does seem more clumsy than other kids his age. Falls over often.

16. Self care skills.
Not really, but does not have a problem with you doing things for him. He brushes his teeth well and works really hard to do it properly but would not think to do it himself. Always has to be reminded.

17. Does not play with objects.
Plays with toys only. Would not think to pretend to be on the phone or make a cape out of a towel or anything like that.

18. Speech
Not too late developing but was echolalic when it did. That has mostly passed now.

19. Physical appearance and health.
So far the usual childhood ailments.

20. Hearing problems.
No.

21. Does not have feelings.
Very much so, very strongly, more so than most about the things that are important to him.

22. Hallucinations.
No.

jimjamshaslefttheyurt Sun 12-Oct-08 20:49:56

Oh no please do provide something if it leaps out sphil. I'd like as much 'in our own words' as possible really.

jimjamshaslefttheyurt Sun 12-Oct-08 20:54:58

Thanks AL Mummy- that's great. It's great to get the variation. DS1 is very cuddly but has no speech. I'm also going to get them to think about the sensory issues around things like cuddling. Hmmm might need some extra time

daisy5678 Sun 12-Oct-08 21:31:29

Sounds great, JJ. Hope you can help them with what you've doing smile

J is 7, has dx of autism. I'm surprised that it's not AS, as there were no speech delays, but I think CAMHS see him as too severe for AS dx, though he's not classic autism either. His ADOS score was apparently too high for AS. I'd categorise him as severe in terms of behaviour/ obsessions, but he has no learning difficulties in the traditional sense and does v well academically.

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)

Yes - and wants to be in control of it - if HE wants to change it, he's fine with it

2. Avoids change in daily routine

Yes - massive meltdown if it changes, even with warning. Again, wants to be in control (his defining feature)

3. Has obsessions

Majorly. Lightswitches and plug switches, ever since he could crawl. Anything electrical. Music, TV, computers, lights.

4. Doesn't understand the feelings of others

Improving, but others always come 2nd and he can't understand how his behaviour affects others.

5.Overreacts to noise

Yes, unless it's noise he's made. It's about control again. He wants his music etc. v loud, but will freak at a bell or a drill noise - hands over ears, meltdown etc.

6.Does not seek the company of others

No - he falls into the 'active but odd' category that Lorna Wing (I think) describes as distinct from the passive or aloof autistic child. He particularly seeks company of adults, but to do something for him, not with him usually.

7.Does not make eye contact

Makes it, but only on his terms, and it's odd. Either too close or not at all. Will make it when he's asking a question of someone but not when someone talks to him.

8. Seems distant

Can do, but is also very affectionate. Distant if the contact is not on his terms.

9. Engages in stereotypical behaviour

Yes, very repetitive.

10.Has problems in his/her eating routine

Horrifically! Won't eat much in terms of quantity or variety and has rigid 'rules' about food.

11. Has temper tantrums

Majorly. Has 1:1 or 2:1 support all the time at school and regularly requires restraint at school and home. Threatens to hit and has hit people with knives. Attacks children and adults. Runs off. Destroys things. Usually related to not having control or being asked to do something he doesn't want to do. sad

12. Has sleeping problems

Didn't used to. Now, nightmares and constant getting up to fiddle with lightswitches and taps. hmm

13. Does not seek physical contact with others

No - he does; he's very affectionate. But only on his terms. Doesn't like to hug/kiss on demand. Is odd with his affection e.g. will kiss my eye with his nose grin which is interesting hmm. He will only accept affection from a very small number of people. If others try (and sometimes even if the select few try) he will try and get away ASAP.

14. Does not get attached to a person

Is very attached (too attached) to me. Also gets very attached to toys and objects.
Will get very attached to adults at school - select ones - and will stalk them and want to be with them and talk to them all the time. He's very possessive of people - sees them as 'his' possessions.

15. Makes slumsy movments

Yep, but has motor skills delays and sensory problems which OT is addressing gradually.

16. Does not have self-care skills

Needs help with cutting up food, cleaning, wiping bottom etc.

17. Does not play with objects

Has started to more recently. But always in an odd, repetitive way - e.g. everything is a microphone (one of his obsessions)

18. Does not develop speech

Intelligibility was late, and still isn't great. But he has a very wide vocabulary and can be very articulate. Echolalia (delayed) has helped with that. He can parrot off videos that he's watched repeatedly and copies what adults say (both at the time and after, which can be interesting blush

19. Presents problems in his her physical appearance and health

Lots of bruises, which make him look like SS should be involved in more than a Disability Team capacity sad but nobody knows how hw gets them because he has a very high pain threshold and doesn't tell you if he's bumped himself.

20. Has hearing problems

Seems as if he has - EP has questioned hearing numerous times - but he actually has v good hearing - he just gets v distracted.

21. Does not have feelings

May not show them like other people, and may not understand them, and may express them too strongly, but of course he has feelings - which are expressed too strongly in the form of meltdowns.

22. Has hallucinations

Nope, but does have a hard time distinguishing reality and fantasy. E.g. his toys are real and have a voice which is theirs. And they hit him and hurt him and call him names sad

sphil Sun 12-Oct-08 21:35:00

OK - here goes. DS2, 6, ASD. Difficult to place on spectrum - mild end of severe would be my guess!

1. Wants environment the same.
Not really. He always switches the lights on, but that's it. He often doesn't seem to notice major changes.

2. Avoids change in daily routine
No, he's very flexible - although like Alsmummy our routine is fairly similar every day. But today for example we were going out in the car, kids were in, belted up etc and then we found out the battery was flat (my faultblush) so we had to swap cars, and he was absolutely fine with it, no fuss at all.

3. Has obsessions
He likes watching TV and Youtube clips on the computer but that's it really. He watches a variety of programmes and changes them often, but he rarely watches a whole episode or film - he likes the trailers best! Constantly rewinding!

4. Doesn't understand the feelings of others
Understands sad, happy and angry if they're obvious - but nothing more subtle (I don't think!).

5.Overreacts to noise
Some noises (traffic, crying, high pitched noises, metallic clanking, chairs scraping). Others (fire alarms, sirens, bangs) don't bother him at all.

6.Does not seek the company of others
Seeks out adult family members - has started leading us into the room he is in and saying 'Sit'! Approaches DS1 at times and also children at school.

7.Does not make eye contact
Very variable. Goes from over intense 'looming' to normal to deliberately averting gaze (usually if feeling under pressure or if being 'tested'). References faces for a reaction or for shared attention. Professionals often comment on how good his eye contact is, if that means anything!

8. Seems distant
At times - drifts off for short periods.

9. Engages in stereotypical behaviour
Flapping arms from elbows, bouncing against side of sofa, pinching own skin, occasional spinning, lots of jargoning and noises

10.Has problems in his/her eating routine
Only eats certain familiar things but I can change the ingredients and he'll still eat it, if that makes sense. So I can make a fish cake into a chicken cake or add different veg etc. He's just started trying new things (has just started an oral-motor programme, which may have something to do with it)

11. Has temper tantrums
Never

12. Has sleeping problems
Takes a long time to settle, occasionally wakes at night but otherwise OK

13. Does not seek physical contact with others
Seeks it out with familiar adults ALL the time!

14. Does not get attached to a person
He is very attached to certain people.

15. Makes clumsy movements
No - though his fine motor skills aren't very good.

16. Does not have self-care skills
Needs help with most things

17. Does not play with objects
He doesn't play with toys except for sensory toys, balls, blankets etc

18. Does not develop speech
Has many single words to request items and some learned 2/3 word phrases. Very very occasionally puts 2 words together creatively

19. Presents problems in his her physical appearance and health
Only asthma and eczema - now both mild

20. Has hearing problems
No

21. Does not have feelings
He definitely does! Mostly happy, with occasional sadness/anger when things don't go his way. Probably more even and placid than most children his age.

22. Hallucinations
Not as far as I know.

Blimey that was a bit long.














22. Has hallucinations

sphil Sun 12-Oct-08 21:38:20

Whoops. Double hallucinations.

jimjamshaslefttheyurt Sun 12-Oct-08 21:43:30

Thanks these are brilliant. givemesleep- ds1 had lots of weird bruising on his legs.I coudn't work out what it was until I walked into his bedroom one evening after bedtime to find his biting his calfs (calves or is that baby cows only? )

sphil our ds' are very similar.....

MannyMoeAndJack Sun 12-Oct-08 21:48:37

Just seen this....

Here is my input, good luck with your, er, students!!! I've just commented on the applicable sections (ds is quite atypical in that he doesn't care about change, has no routines, etc):

6.Does not seek the company of others
ds would not initiate play with his peer group/others but he always likes to know that people are around and that he is not alone

7.Does not make eye contact
ds does make eye contact and sometimes it can be very good, especially if he is engaged in a game of his choosing - however, he sometimes looks into your eyes as though he is looking right through you and into your brains!!

8. Seems distant
ds will often affect nonchalance with new people but he knows full well they are there - in fact it's only possible to ignore somebody if you know they are there!! If a new person tries to engage him, he will often giggle and look anywhere but at them!

9. Engages in stereotypical behaviour
ds will twiddle his fingers in front of his eyes very fleetingly and in a random way - he doesn't have the concentration span to focus on doing anything for very long!

10.Has problems in his/her eating routine
ds has a restricted diet but has no rigid eating routines

11. Has temper tantrums
ds will sometimes throw tantrums but they seldom last very long (20mins max). There is usually a trigger for why - not getting his own way, being prevented from doing something, etc (in fact the triggers are not very different from those that anger NT kids!)

13. Does not seek physical contact with others
ds will seek physical contact with adults he knows well - parents, grandparents, teachers, other known adults. ds likes contact and being touched, cuddled, tickled, stroked, hit over the head with pillows (!), etc

14. Does not get attached to a person
ds definitely knows when a person is new or if they are familiar but so far, he has never exhibited separation anxiety from anybody!

15. Makes clumsy movments
no - he's as sure as a cat and climbs like a monkey; very spatially aware when climbing and rarely makes a mistake

16. Does not have self-care skills
true - is doubly incontinent, cannot dress/undress himself, clean his own teeth, wash himself, etc

17. Does not play with objects
ds will play with 18-36mth music toys, pressing the buttons to hear all the available combinations and will show a preference for certain tunes/melodies. ds does not know how to play with complicated toys (eg. farms, tea-sets, books, trainsets and the vast majority of toys)

18. Does not develop speech
ds is completely non-verbal

19. Presents problems in his her physical appearance and health
from the neck down, ds functions perfectly; he has no bowel problems, no allergies, etc. He is rarely ill, his teeth are perfect and white (due to lack of sugar and sweets in his diet!) and he is the healthiest kid I know!!!

20. Has hearing problems
ds appears to hear everything but he is unable to co-operate in a standard test

21. Does not have feelings
not true - when ds hurts himself, he cries a, 'I've hurt myself' cry. When other children have been upset around him, he has become quiet and seemingly aware of the distress

23. Sensory Seeking
I would say this is the only item missing from your list. ds is a very oral child. He also likes to explore his environment by touching things. He is also a very physical child: trampolining, jumping, running, climbing, being tickled/chased, etc.

HTH

magso Sun 12-Oct-08 21:49:11

21. Ds ( 8 LF ASD )has very strong feelings! Very much so! So much he cannot cope with them! They just seem to be caused by different things to the average child. He can be absolutly distraught at a flower dying, a toy falling over - but then quite happily ask if he can have Daddies car when he dies or barely notice when his pet fish died! His feelings for inanimate objects can seem rather over the top for the rest of us.
7 Doesnt make eye contact - ds makes very good eye contact at certain times - almost fixes people interested in him! This fooled his peadiatrician. Other times he doesnt make eye contact.
13 does not like physical contact with others - ds tends to overdo the physical contact - hugging too hard, ( and innappropriatly) licking faces, pinching at clothes to get attention, continually tapping too hard at an arm without realising it is too hard for the recipient. Other times he will seem over sensitive.
Overreacts to noise- ds can completely overract but also can make repetative noises that drive the people around him to distraction but seem helpful to ds! He is very noisy!
14 does not attach to people. As a little one ds seemed far too independent - not needing hugs or responding to parental approval as most children do. He does have strong attachments they just show up differently ie -less emotionally and have taken a lot longer to develop. He said practical words 'that' ( I want that) and 'juice' long before Mummy!
6 does not seek the company of others - ds does - he need company (anyone he would go off with a stranger!)like others need sleep! However his need for company is slightly different - he needs the attention and fun rather more than the give and take of average relationships. In fact I am not sure he needs relationships at all really more familiar people! He cannot cope with a game for instance and certainly not not winning!. HTH

MannyMoeAndJack Sun 12-Oct-08 21:55:47

btw, ds is 5.10 and is at the severe end of the spectrum, however it is his SLD that cause him the most problems.

magso Sun 12-Oct-08 22:02:54

Agree sensory seeking should go on your list ( perhaps alongside no 13) along with unusual pain tolerance ( high or low). Also seeing detail (seemingly unimportant detail)but not the big picture but this may be ds LD - ie ds may notice a car-driver is wearing a red top but not notice the potential danger to himself if he runs infront of the car!

jimjamshaslefttheyurt Sun 12-Oct-08 22:05:17

Thanks again everyone. I'm going to bring in sensory things. I'll probably make up a few sensory behaviours (the list above is just taken from a paper) and will talk about it elsewhere. Personally I think it's incredibly important but often forgotten!

Manny- Lucy Blackman (non-verbal adult) said in her book that she would touch things when little because she couldn't see them until she had touched them (if I have recalled that correctly). It was to do with depth perception I think. DS1 used to touch everything but that has reduced as he's got older.

magso- ds1's good eye contact (on his terms) fooled people in the early days too

jimjamshaslefttheyurt Sun 12-Oct-08 22:06:51

The detail one is a good idea. I'm doing a bit about research and might mention it in there (lots of research on that).

DS1's sensory seeking has got worse with age, it's probably one of our main behavioural problems now.

bullet123 Sun 12-Oct-08 23:39:03

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)

Ds1 and I are both like this, though I'm better at hiding it.

2. Avoids change in daily routine

Both like this again.

3. Has obsessions

I have had an overall obsession, unchanged, since the age of 8. Ds1 also has obsessions.

4. Doesn't understand the feelings of others

If pointed out clearly I can be sympathetic, but frequently can't gauge another person's moods. Ds1 is the same, he has learnt to say "are you alright?" if someone visibly hurts themselves, but will often laugh when someone is upset, not understand when his brother is tired, not understand when someone is cross.

5.Overreacts to noise

I've learnt not to overeract, beyond practically screaming "turn it down!". Ds1 is fine with most noises and just covers his ears or puts his hood up if he's not.

6.Does not seek the company of others

Ds1 will on his own terms, he can be very friendly. I am less sociable, I don't feel the need for friendships, though I do like my online friends and the book group I go to once a month.

7.Does not make eye contact

Neither of us are great at this.

8. Seems distant

I can seem very distant. I rarely initiate physical contact with DH, do not initiate telling parents I love them. Ds1 is the opposite, very cuddly and loves forehead kissing and playing with hair and faces.

9. Engages in stereotypical behaviour

I do lots of repetitive finger movements. Ds1 has less stereotypical physical movements but does have more ingrained vocal repetition

10.Has problems in his/her eating routine

Ds1 very fussy, but getting a bit better. I am fine with eating, love experimenting with different combinations. Very minor issues such as liking to eat foods in a set order.

11. Has temper tantrums

Yes and yes.

12. Has sleeping problems

Ds1 doesn't go to sleep until late, but is fine once he's asleep. I don't feel tired for ages and wake up several times in the night, but apart from that, fine.

13. Does not seek physical contact with others

Ds1 definitely seeks contact. I don't, DH has to remind me frequently that some affection would be nice.

14. Does not get attached to a person

Ds1 has just started to call specifically for me when he wants something, other than that he is very happy to be with anybody. I am attached to DH.

15. Makes slumsy movments

Yes for me, not so much for Ds1, though he does have an odd way of running.

16. Does not have self-care skills

Ds1 is only five so would still need help. I have appalling self care skills, very wary of putting details on, but they have marginally improved since having the children.

17. Does not play with objects

We both play with objects.

18. Does not develop speech

Ds1 does, is hyperverbal probably, but has atypical language development. My language development was normal, but I have great difficulties in being able to speak a lot of the time, mainly due (I think) to initiating difficulties but also to very rare auditory processing problems, problems judging give and take of conversations, not understanding when I should join in.

19. Presents problems in his her physical appearance and health

No and no, beyond mild eczema in Ds1 as a baby and me until I was 7.

20. Has hearing problems

Not now, Ds1 used to have glue ear.

21. Does not have feelings

We both have feelings, although have difficulty expressing them a lot of the time. I do feel emotionally distant a fair amount of time, but that's not to say I never get upset for example.

22. Has hallucinations

I don't, I don't think Ds1 does.

I am Aspergers, Ds1 is ASD, about middle functioning.

amber32002 Mon 13-Oct-08 07:06:06

As an adult with Asperger syndrome, some thoughts:

1. Wants environment the same? Not exactly. I need it to be predictable. If it’s changed and there’s no warning, that’s when it’s scary.
2. Avoids change in daily routine? Same answer as (1) above.
3. Has obsessions? Yes, definitely. It’s a bit like stopping or turning an ocean-going oil tanker…we takes ages to ‘switch off’ from a set of thoughts or a set of actions. Other people seem to be able to do so instantly, which is more like a small speedboat I guess.
4. Doesn't understand the feelings of others? I learned to understand the reactions of others to particular things, and amend my behaviour and my comments. Feeling what others feel may be beyond my skills, but I can achieve the equivalent through other methods. It just takes a long, long time to learn.
5.Overreacts to noise? Yes, I can’t filter noises out. I hear everything, and an unexpected noise is often as loud as a thunderclap.
6.Does not seek the company of others? Not true. I learned that if I wanted to understand the social world, I had to try to seek the company of others, and so I prefer to be with one trusted person at a time who acts as a guide for me. Big social groups are very, very difficult as I can’t switch attention fast or hear what’s being said.
7.Does not make eye contact? Sort of wrong. I can and do, but it’s overwhelming. They think our eyes are so sensitive to movement that the tiny flickering of eye movements overloads our brain.
8. Seems distant? Yes, probably true. I am often in my own world of thoughts and may seem as if I’m not listening.
9. Engages in stereotypical behaviour? Yes, though as an adult I disguise it really well.
10.Has problems in his/her eating routine? Not so much with me, though I have big issues with food handling and cleanliness/food being fresh.
11. Has temper tantrums? No, I never have had temper tantrums. I react to too much scary input by “shutting down” – being unable to speak or move.
12. Has sleeping problems? Yes, always.
13. Does not seek physical contact with others? Very true, though I’ll tolerate it from close family. It often hurts.
14. Does not get attached to a person? No. I’m very ‘attached’ to my husband and son.
15. Makes clumsy movements? Yes, I have all the balance of an elephant on a unicycle, unfortunately.
16. Does not have self-care skills? I used to have quite poor ones. It took a long time to learn them.
17. Does not play with objects? Depends on the object. I’m very happy playing with most lego, etc.
18. Does not develop speech? I was hyperlexic as a young child, but never knew what to say, so mostly I said absolutely nothing to anyone. I also couldn’t get the tone or accent right.
19. Presents problems in his her physical appearance and health? There are health problems that tend to affect female aspies, but I’m not going into what those are on an open board!
20. Has hearing problems? I can’t hear against a background of other noise.
21. Does not have feelings? I have simple feelings: Happy, sad, scared. Apparently other people can experience a mix of them. I don’t.
22. Has hallucinations? No, not ever.

jimjamshaslefttheyurt Mon 13-Oct-08 08:24:46

Thanks again everyone.

Does anyone have any horror stories about dealing with SS, or for that matter good responses from SS, when they've got it right. If they got it wrong, why did they get it so wrong? Was it because they didn't understand ASD at all? Or was it because of lack of money/lack of available services.

Also I guess why did you approach SS in the first place? I really want the students to think about the sorts of help that SS can provide. One aspect that researcher's have found is that if the SW doesn't understand the nature of the disability then they often provide inappropriate or no help (unsurprisingly) which I why I thought we would go through the features of autism, but I'd like to move onto how SS can (theoretically) help as well.

MannyMoeAndJack Mon 13-Oct-08 08:48:37

There's that thread from a month or so ago that details various silly responses from SS that you could use?

I would say the main things with SS are:

1) they understand that a child who is mobility impaired is disabled and react more sympathetically. My ds is mobility enhanced and looks 100% 'normal' and these features went against him when SS came round with their clip-boards and pens. SS set their criteria for respite very much biased towards children who have mobility issues (and yet the parents of those children always know where they are - SS don't care if enhanced mobility causes problems)

2) they take forever to make decisions and get things moving. We've only just found out my ds will be able to access a council run respite unit.....however, it's bound to take another month or so for a home visit to be arranged and forms to be filled in, then another month or so before ds can visit for a few hours, then another month or so before he can actually stay overnight, and so on and so on ad nauseum.

3) cost is everything and saving money is always more important than helping families

I first approached SS via a phone call - big mistake. I spent about 20mins detailing my ds's problems and how they were impacting on our ability to cope. I imagined the SW would be sympathetic and realise that help was needed but I was way too naive...'thank you for all this wonderful information; would you like me to save it on the computer?'. er, no delete it maybe? That was my introduction to SS - that phone call took place more than two years ago and we're only now getting help put into place (see (2) above). As no help was forthcoming after this initial phone call, I soldiered on thinking it must be our fault for bothering them in the first place (beginner's mistake and very much what SS want people to do)...we were finally referred to SS by my ds's nursery about six months later when it was obvious to my ds's nursery manager that we needed help.....the forms were filled in, a SW came round and two weeks later a letter duly arrived to tell us that my ds didn't meet their criteria for respite and that our case had been closed. And so it went on. I won't bore you with any more details but you can imagine how it went.

Now, in an ideal world, any SW worth their salt would've realised what a challenging case my ds was and provided some respite many moons ago (particularly as my friends' physically impaired kids were all receiving direct payments and such like) but no, instead we had to fight and write and fight and write. Hooray for pester power!

SS need more awareness of how ASDs and SLDs can impact a family (and your list is a good starting point). However, the SW who came round and then told us our case had been closed also told me he'd worked with adults with ASD in a residential setting, so therefore had lots of experience of the condition. Didn't stop him closing our case though!

Hope this isn't too long.

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