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Debunking some myths - autism and empathy, visual thinkers and lack of imagination

(49 Posts)
Mumoftwinsandanother Wed 26-Oct-16 22:50:34

Just wondered if some of you could help me please. My son has a dx of ASD. I agree that he has ASD or at the very least a social communication disorder with sensory issues (broadly the same thing under DM5).

We get great support from his school, the LA autism service (who are essentially specialist autism teachers who go into schools and advise them of little things that might assist to make his life easier) and a local charity support group run by specialists. I am grateful for these people and have no wish to offend them.

However, they all make sweeping statements about ds and autistic people in general which I know to be untrue. However, as I am not an "expert" my views are politely ignored. In particular, they say:

1) people with ASD have no empathy - my DS has loads and he is only 4, he both understands how other people are feeling and expresses concern. This false belief is the one that angers me the most and shows the biggest lack of insight into ASD but it is peddled by the autism teachers at all the support groups;

2) people with ASD have no imagination - my DS has loads, genuine imagination not repetitive play or re-enactment of play he has seen before (he makes up scenarios for his toys, invents names for them, imagines one object is a completely different one all the time - the problem is getting him to think about the real world). This false belief will I think curtail how people encourage him to learn. For example, I said to nursery teacher that he doesn't really build things with blocks - oh that will be lack of imagination she says - no its lack of fine motor skills. Now he understands how to use blocks he builds all sorts of weird and wonderful things.

3) all people with ASD are visual thinkers - whilst I am sure lots of people are (Temple Grandin for example), I believe my DS is not. Nor is he a pattern-thinker. He is clearly a verbal thinker. He never shuts up, always talks through what he is doing, talks to himself at night about what is happening. I am a verbal thinker with a huge memory for facts that I have heard rather than seen (any idea where he might get some of this from). I don't think in pictures. DS' teacher with 25 years experience of autism is convinced he is a visual thinker and regularly states this, she has photos up everywhere (the photos aren't a bad idea as it helps remind him of sequences etc but they don't prove that this is how his mind works).

I would like to have a stack of articles that I could give to people during meetings if they come up with any of these old chestnuts just to see if I can make them think again. Does anyone have any links to good articles debunking these myths?
Will post in AIBU for traffic if it is quiet here but thought this would be the best place to start.
Many thanks

amunt Wed 26-Oct-16 23:50:02

Not sure where you can get the info, but we've had the same problem. I have asked staff (nicely as it's all well meant) not to apply their autism course knowledge to Ds. The EP, the autism advisory teacher etc.. don't stop talking about routines and visual timetables and his need to spin (ds doesn't spin). He loves change and novelty and visual is his weakest skill. My heart sank when I heard the office staff talking about an autism course they were going on. Would be so much more useful if they just got a quick briefing by the parents of children concerned.

Swippy Wed 26-Oct-16 23:55:23

Oh my goodness I totally agree with you and my ds is exactly the same. I would also love to be able to get some information on this too. I actually think it's very important that people realise this, especially the lack of empathy and imagination. For example my son has had meltdowns and hit his teacher he has later on felt so bad and ashamed that it affects him for days, also if people paid more attention to what he is doing and saying he can be very creative.
My husband had a book I think it was called the myths of autism which talked about this...

Swippy Thu 27-Oct-16 00:00:26

Anderson challenging the myths of autism

Swippy Thu 27-Oct-16 00:01:24

I also find the visuals/timers etc sometimes make my son more stressed out!

Mumoftwinsandanother Thu 27-Oct-16 00:13:11

Thanks, I had a quick look at Anderson's website on challenging the myths. It does deal with the lack of imagination.

My boy also loves change and novelty. He doesn't follow their visual timetables and they think it is because they are not interesting enough for him so they are making them bigger/ putting Velcro pull-offs on them to interest him. The reality is he doesn't follow their timetable because he doesn't want to/hates routine/finds it boring/gets more attention by not following it. (I do not think he is being naughty as such just doesn't quite understand the need to conform/finds conforming stressful even when he knows what is expected of him.) I am hoping they will learn from him over time what he can and can't do but if I could show that there is a body of thought behind this it might at least stop them mentioning it to me.

Swippy Thu 27-Oct-16 04:22:37

Have you looked into the criteria for Pda? It's a horrible title but effectively they get anxious with too many demands and like to be in control, I think my son has this and a lot of Pyschologist's don't recognise it but the usual strategies for autism don't work...usually they present as very imaginative liking role play etc

Swippy Thu 27-Oct-16 04:24:47

Meeep Thu 27-Oct-16 04:30:49

Omg totally this.
DD is the MOST empathetic MOST imaginative child!
Yes you are completely not alone here.

Mumoftwinsandanother Thu 27-Oct-16 21:15:13

Some things stack up with the PDA but not all. He is often quite happy to comply with demands (especially if he knows the person). He is not obsessively focused on demand avoidance and he does role-play/imaginative play loads but it rarely has to do with demand avoidance, it seems to me to be just for fun, something he enjoys.
Meeep glad to hear your DD is also empathetic/imaginative. Do people believe this or do they think she must be faking it/following a script because she has ASD (or alternatively try to argue that she does not have ASD).
I know to the teachers at school I sound deluded, yes he does really play imaginatively, yes he uses lots of things he has seen on the tv but it is real imagination as he can think up new stuff/make up names/imagine things to be things they are not with no real prompting. Yes he understands things better when you talk to him not show him pictures. Yes he understands how you feel, in fact has real emotional intelligence, he just somehow can't express it to you in a situation he finds stressful. He can't find the words, is a little overwhelmed.

Meeep Thu 27-Oct-16 21:50:49

She's 9 so we are thankfully past the days of the pointless big timetables here! Some teachers have been better than others at listening to me instead of following a Typical ASD Child script.

We do get "Oh she must have been wrongly diagnosed", but that's from family mostly.

The camhs woman was dreadful though, I remember gritting my teeth a lot during meetings with her. So many generalisations that didn't fit my child at all.

I'm not sure what the answer is really!

CocoaX Thu 27-Oct-16 22:08:49

Children with autism are all different though. A colleague basically said to me if you have met one person with autism, you have met one person with autism.

As it happens, DS does need routine and security and hates change. However, visual timetables or any timetables only help to a degree because he withdraws into his own world until he wants to transition from situation A to situation B. It is not PDA, but almost like time out for himself. It is kind of frustrating because he will career around with anxiety at any upcoming change, then settle when you actually want to go into something utterly absorbing.

He is very empathetic and sensitive, but he does not get social nuances at all, so will say what he feels. But yes, emotional or sensory overload leads to meltdown so it is not like he is able to express or master his own feelings very well - it is a physical reaction rather. I also think he plays very realistically- and collects obsessively etc so maybe that is more stereotypical. I don't know, really.

claw12 Thu 27-Oct-16 22:22:52

1) lack of empathy really does not reflect a lack emotional connectedness. Don't confuse lack of empathy, with social communication. I.e. Not a lack of underlying emotional responses, just inability to express it.

2.Autistic children do have imagination, but it is not social.

3. Etc, as above.

Googling should lead you to plenty of articles. Good luck

lougle Thu 27-Oct-16 22:34:46

I think it's tricky. DD2 finds empathy difficult. Last week I was talking to her and I thought we were having a nice chat. Then she fidgeted and I said 'I can see you want to read your book, so you can go now...' she replied 'I was thinking "are we chatting or am I just wasting my time?"'

I was so genuinely shocked and hurt that it must have shown on my face briefly. DD2 promptly burst into heartbroken tears. She was devastated that she had hurt my feelings, but until she saw my reaction, she couldn't forsee that her words would be at all hurtful because she lacks the empathy that would allow her to put herself in the other person's place.

claw12 Thu 27-Oct-16 22:46:33

Exactly lougle (good to see you again by the way!)

Ds will often to go the shop, buy things for himself, then once home, cries! And tries to give me things he has bought, as he 'feels greedy'!

Empathy, however totally confused!

Ohmuther Fri 28-Oct-16 02:23:28

I remember my own 'autism training' from 10 years ago (pre DD). I then met a friend's v autistic niece & she blew most of it out of the water! Why is that bollocks still being touted about?
Lougle DD asked me to take her to the hospital so they could kill her (rather than take her to school). She was absolutely devastated when I started crying. The pair of us hugging each other with snot running down our faces. 'Theory of mind' and empathy aren't the same thing at all...

Ohmuther Fri 28-Oct-16 02:27:20

And I'm terms of imagination... DD has whole totally original worlds in her head! (And the imagination to see that what she's being asked to do at school half the time is a stupid waste of time & effort)

claw12 Fri 28-Oct-16 09:43:35

Mumoftwinsandanother Sun 30-Oct-16 15:15:00

Thanks all, and especially Claw for those last two, haven't had a lot of luck with googling. Will see autism teacher and nursery teacher on Monday and see what new outrageous nuggets of b/s get spouted.

zzzzz Sun 30-Oct-16 17:21:30

I tend to just try to morph the frankly potty interventions into something useful. So we use the visual timetable only if it has written subjects/activities on it (thus DS can follow it and staff all use the same terminology for things).

It should also be noted that DS DIDN'T line things up or spin until some bright spark "used those lives" during teaching hmmconfused [twits] (he was 10). He quite likes lining things up now though. I try to pretend it is meditation like as the whole thing makes me a bit confusedsad

They don't get it. They don't really want to. Just find an explanation that limits damage and maximises usefulness to your child and try hard not to snap at them.

Mumoftwinsandanother Sun 30-Oct-16 21:44:46

do you think zzzzz that the reality is if you don't use visual timetables then there is not much else that they can think of. We have a young school-attached SALT. Brilliantly keen but I think she is all out of ideas once we go off script. The reality is my boy doesn't always want to comply, not because he is anxious, not because he doesn't understand but he doesn't really see why he should. How do I tell them that without implying that he is naughty (which I don't think he is, just less of a mindset to do things purely to please other people/be accepted by the group).

zzzzz Sun 30-Oct-16 23:57:13

DS is 11 now. Fundamentally if you can't understand WHY you are doing X it is massively harder to keep on doing it (e.g. Reading, or subtracting both of which have obvious applications for a nt child and are utterly inane to a child like mine). He does it to be polite/kind tothe staff.
It doesn't help to dash their enthusiasm but that doesn't mean you can't internally sigh.

Don't panic, he is probably going to develop massively and it won't kill him to play along any more than it killed us to sit through church/assembly/music recitals. It's quite important to remember that's what his day has been like, thpugh, and to find really fun things to do after school and some mental stimulation. It is what it is.

OrlandaFuriosa Mon 31-Oct-16 00:11:51

Well, it's a spectrum, isn't it.

But as well as the pda definition, hsp may be worth looking at.

OrlandaFuriosa Mon 31-Oct-16 00:13:59

Highly sensitive person. Can't copy the ref ATM.

zzzzz Mon 31-Oct-16 00:20:02

"Well, it's a spectrum, isn't it."

I'm not sure I understand your meaning/point?

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