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Can anyone help me understand autism?

84 replies

cometinmoominvalley · 28/02/2019 14:08

My DS, who is six, has recently been diagnosed with high-functioning autism, ADHD and Sensory Processing Disorder. This has come as quite a relief actually and makes sense of a lot of his quirks and difficulties that I've had with him. I instantly felt like I must be a better parent than I thought if there is this reason I don't find him easy a lot of the time! He's so very lovely, endearing and funny but he's fully on and all the simple things seem to take twice the effort!

Anyway, I feel like I've sort of got my head around ADHD and SPD. I may even have some form of both of these myself and it just makes sense to me on some level. I know I need to find out more and this will be a learning curve, but where I'm really struggling is the ADS.

I've read about it a lot but I feel like there is so much contradictory information out there, and obviously every person with autism is an individual so there is no 'typical' but one thing I keep bumping up against is this idea of lack of empathy. For instance, a good friend of mine who works with SEN children said she read something once that said autistic children view people in the same way as they view objects.

This upsets me. Empathy is so key, isn't it? We describe psychopaths as being primarily people without empathy but autism is such a different condition. How can they have this in common? It's true that DS behaves and responds to things differently. But he can be so kind. He loves feeling that he is 'helping', he hugs and squeezes me all the time, he is generous. He doesn't always reply when I say I love him but then suddenly will announce "Mummy I love you more than ever". When I was stressing about my untidy bombsite of a flat the other day his response was "I don't care about the mess, I care about you." When I was quarrelling with his dad once(something we tried not to do in front of him - we're no longer together), calmly sat next to me and said that if I was having a bad day I could come and talk to him. He must have only been four at the time. He's also very loving with his friends and gives his one best friend at the moment a hug at the end of school. He even asked me if I had a picture of this friend as he wanted to put it up on his wallGrin

So, while there is no doubt in my mind that he is 'different' in lots of ways (and I do agree with the diagnosis, I feel like I really need someone who is knowledgeable about this, maybe someone with ASD or who has a loved one with ASD to help me understand the empathy thing and what it really means. How can my child be so warm and kind on one hand, and yet apparently have a lack of empathy? I will say that he struggles socially because he often doesn't notice and/or isn't bothered about what the appropriate behaviour is but is that empathy as such? I don't understand.

Sorry if this doesn't make sense, I want to try to understand what ASD really is and how it feels, and how that's different from neurotypical people, especially in terms of relating to others and I guess loving and caring about others. Is my child destined to be cut off emotionally from everyone around him? That makes me sad for him although possibly he wouldn't know any different.

OP posts:
Daisychainsandglitter · 28/02/2019 17:30

Hi OP my DD also has high functioning autism and like your DS is also v affectionate. She loves to hug me and tell me she loves me but with her peers she expresses her emotions and empathy sometimes differently to her peers. For example she has issues with boundaries and because she doesn't quite fit in but wants to make friends hugs other children and has a complete lack of awareness about other people's boundaries. Other things that might upset others she does not show too much emotion about but on the flip she can be very affectionate.
I think it's wrong to say that people on the autistic spectrum can't show empathy but they sometimes show it in different ways. You know your DS loves you and that is the main thing that matters.

ahtellthee · 28/02/2019 17:32

Happy to chat via PM if you need. My eldest has the same diagnosis

StormTreader · 28/02/2019 17:56

I seen it said that autism is really just "not being issued with the manual that everyone else gets", I strongly suspect I'm on the spectrum myself.

A NT person sees someone upset or happy or nervous and generally has an intuitive grasp of why that is, when it comes to social interactions they just instinctively know whats needed to fit in and swim in the social river fairly seamlessly on the whole.

Autistic people start off with no idea, they have to guess and observe and learn to try and work out whats going on and why people react as they do. I think that's probably part of why change is so distressing, because things suddenly change for no discernible reason which means that maybe EVERYTHING can change at any second for no reason, or maybe there was a reason and you just didn't see it, leading to a lot of anxiety and panic as you try to grasp what it was that you missed.

I have spent a lot of time on the relationship and AIBU boards and suspect thats because they are invaluable for learning "when they say this but do that, this is why and what it really means".

Interested in this thread?

Then you might like threads about this subject:

HippyChickMama · 28/02/2019 18:04

@cometinmoominvalley I guess I have sympathy rather than empathy because I find it impossible to put myself in someone else's shoes but lacking empathy doesn't equate to not caring. I'm actually a nurse and when I've questioned how I can be a nurse when I lack empathy dh has pointed out that a level of emotional detachment is probably helpful in self preservation as a nurse.

NeopreneMermaid · 28/02/2019 18:12

My 6yo just received a diagnosis too. Someone sent me Autism: How to Raise a Happy Autistic Child and it's totally transformed my thinking and made me feel really positive about it.

For the first time, I actually thought to ask DS what it's like to be autistic and his answer blindsided me: "Fun." Smile

OrchidInTheSun · 28/02/2019 18:25

The Sally-Anne test is often used as what theory of mind means. If you have a look at the strip cartoon, NT children will say that Sally will look in the basket because they understand that Sally won't know that Anne moved the marble to the box while she was out on her walk.

Autistic children typically say that Sally will look in the box because they know that the marble is in the box.

Can anyone help me understand autism?
OnlineAlienator · 28/02/2019 18:28

Yeah i agree we dont lack empathy, we just express it differently. I like to provide practical help and solutions. Its not always welcome, apparently a useless hug is needed sometimes? Grin

Whatdoyouknowwhenyouknownowt · 28/02/2019 18:31

University of Derby has a free course online, which I found interesting.

Wales has a new autism service, with info.

ASD Child Resources

Titsywoo · 28/02/2019 18:36

My DS is autistic and he appears to be pretty lacking in empathy. I'm not sure if he can't process it or what but he doesn't hug us and would laugh if we fell down. So the idea that autistic people are hyper-empathetic doesn't hold true for him. He doesn't suffer from anxiety like many autistic people do. I know he loves us but he doesn't show it in the way other people might do. But another friend has a very empathetic son who would cry if she fell down and he suffers terribly from anxiety. In all honesty my sons life is easier and happier than his as anxiety makes life so difficult.

When it comes to autism I tend to look at the triad of impairments to see what autistic people tend to have in common as that is what they are diagnosed based upon. In all honesty I still find it hard to explain or understand, I just see my son as he is and don't dwell on it too much!

FuerzaAreaUruguay · 28/02/2019 18:37

I'm so glad you got a diagnosis.

zzzzz · 28/02/2019 18:39

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zzzzz · 28/02/2019 18:40

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Purplepricklesalloverhisback · 28/02/2019 18:49

Some people with autism lack empathy and prefer to be alone.

Some people without autism lack empathy and prefer to be alone.

Some people with autism struggle to read emotions and facial expressions

Some people without autism struggle to read emotions and facial expressions

Some people with autism display their own emotions in a very extreme way. Either intensely happy or intensely sad/angry etc.

Some people without autism can be exactly the same!

It’s a spectrum disorder and therefore everyone presents differently. You don’t need to understand Autism, you just need to understand what your son’s strengths and difficulties are.

TheNoodlesIncident · 28/02/2019 18:55

Sorting dinner out but www.verywellhealth.com/do-people-with-autism-lack-empathy-259887

MorningsEleven · 28/02/2019 19:57

But then, why is there this idea that people with autism are lacking empathy or don't feel the need to be around others?

DD just doesn't get empathy, it's an alien concept. She'll ask if you're OK if you're feeling ill, though sometimes I think it's because she's germphobic and wants to know if she's going to catch something. She avoids physical contact (painful, weird, pointless) and human interaction (scary, weird, pointless). She wants to live in the shed and just come in when she needs something. She sees most people as pretty pointless.

Oddly the dog, who is no more use nor ornament, is the focus of all of her affection. She adores dogs, looks after them, plays with them, touches them, talks to them, lets them touch her. I might dress as a dog one day to see if she'll have a proper chat with me.

Springisallaround · 28/02/2019 20:16

In the Chris Packham documentary about his late diagnosis of autism, he revealed that he felt so strongly about animals, he was distraught at the thought of losing his dogs to the point he might feel he couldn't go on without them. He also cared for a wild bird, a kite? and when that animal died he was again completely distraught and went into a depression for a long time. He over-felt (possibly) towards animals to the point of obsession and making himself feel ill at times but also they gave him so much love. People were more mysterious to him.

MephistophelesApprentice I remember reading a book years ago, it might have been by Temple Grandin who also felt love and feelings towards inanimate objects, and when she was told the carpet wasn't something that could hug her back (as she believed the carpet loved her as it was soft and cuddled her) she was devastated at this news, it destroyed her belief system for a while.

Of course Temple Grandin is super-empathic with animals and that's what's enabled her to inform factory design for them because she's able to understand the sensory experiences they go through and put herself in their place.

Lilymossflower · 28/02/2019 20:38

Talk to people who have autism, and read books written by people with autism.

Ignore everything and anything about autism written by someone who isn't autistic.

The misinterpretation of empathy is a big one, and it really pisses me off, because its bullshit. Autistic people feel empathy actually massively, it's just showing it that they struggle with

zzzzz · 28/02/2019 20:48

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fleshmarketclose · 28/02/2019 20:51

Dd has so much empathy it is actually a problem because she finds it so difficult to cope with real life. She doesn't watch TV for fear she might see something upsetting, she stopped reading when subjects became more challenging, she has struggled immensely with a secondary school curriculum, history, geography, RE and English lit have all caused her a lot of distress. She is devastated if she thinks she has upset someone, she hurts when people are upset, it is a nightmare in all honesty and very life limiting.

parietal · 28/02/2019 21:08

empathy is one of these annoying words that is used in lots of different ways by different people. And saying that people with autism 'lack empathy' is not at all helpful.

i do find the theory of mind concept very useful. it can help explain why people with autism sometimes take things very literally, and don't always get irony or jokes.

in younger children, difficulties with theory of mind might appear as difficulties in sharing information, so the child doesn't follow what you point to and doesn't point things out in a book to you. This then makes it harder to learn language because the child is not attending to the same thing as you.

zzzzz · 28/02/2019 21:25

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Message withdrawn at poster's request.

iamme21 · 28/02/2019 21:29

Hope this helps

Can anyone help me understand autism?
IIIIIIII · 28/02/2019 22:37

he revealed that he felt so strongly about animals, he was distraught at the thought of losing his dogs to the point
I feel the same, I have autism and always found it easier to relate to animals, I have loads of animals and if the dog is sad I know he'll want belly rubs and treats.

People can be more complex and I'm sometimes on the back foot of how to react to people's emotions.

cometinmoominvalley · 04/03/2019 06:59

Thank you so much to everyone who replied! Sorry I haven't had time to respond but thank you for the links and information, so helpful!

OP posts:
HardAsSnails · 04/03/2019 07:28

Unfortunately, a lot of the research on autistic people and theory of mind/empathy is flawed. ToM tests on autistic people were bound to show flaws as they are heavily language based and autistic people typically have problems with language. All people are more likely to be empathetic to those most like themselves, the 'double empathy problem' is a theory that suggests non-autistic people have as much problem being empathetic to autistic people as the other way round.

It's worth googling works by Damian Milton eg network.autism.org.uk/knowledge/insight-opinion/double-empathy-problem and Brett Heasman, eg