Can anyone help me understand autism?

[cometinmoominvalley]

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 wall

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.

I wasn't sure whether to post about Alexithymia, as people get their knickers in a right twist as to what it actually is, but as Bluesky has posted a link to it, I will say that I'm fairly sure my ASD DS has it.

Because he is utterly unable to understand or articulate his emotions, he defines his well being via his physical health. I can see this so clearly, but he can't. The more stressed and unhappy he is, the more health conditions he develops. All of which disappear when he is feeling ok again. I can see an incredibly strong correlation between his mental state and his perceived health. However, he is COMPLETELY unable to see that there is a link!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

One thing I would say is pretty common is feeling things very strongly. That ranges from sensory issues, so sights, sounds, smells and skin sensations (clothes and tags, shoes, different fabrics etc) to emotional reactions, so experience fear, anger, annoyance, sadness etc strongly but also happiness etc.
Creating routines and enjoying repetitive behaviour or collections can be both calming in its predictability and enjoyable. Someone with ASD often have strong likes and dislikes and find some of the things they dislike intolerable and avoid them, whereas NT can often put up with situations they don’t like and not feel them as strongly. Queues, unpleasant smells, dashed expectations etc.
That is not to say the emotional reaction to challenging stimuli cannot be overcome or lessen with age; it’s an area that children can be supported in managing.
Other people can be difficult to predict and create strong emotions with their own reactions and behaviour so can be overwhelming sometimes.
It’s very short sighted to say people with ASD see others like furniture. They may choose to block others out to lessen sensory overload or their own strong feelings may eclipse the understanding of the feelings of the other person, if that makes sense.

What I've observed in my job as a support worker is that routines and also following rules being are really important for the people I support. Getting hung up on little details and having obsessions. The lack of empathy is more about not being able to understand other people's emotions and facial expressions.

I also wonder if the impression that ASD people lack of empathy comes from them living in a care setting from an early age and not having a loving environment in past. Everyone will have a different experience with ASD and for me it's just a part of the person. The company I work for is very committed to giving people with disabilities their best chance in life.

My step brother has ASD and he is at college, he builds gaming computers and does digital art and he's very successful with it. He has lots friends and a great life but does have his struggles.

I'm not an expert so could be totally wrong but is it not that people with autism generally view things differently and may not show empathy in a way that the rest of us regard as typical? Not that they don't feel any empathy at all?

Your son is still the same child he always was before

Oh, bless him MargoLovebutter. I feel so protective of my son and by extension every child with autism. My DS is actually probably similar, I'm still learning and trying to understand it and keep having little lightbulb moments.

Re Alexithymia, basically what I'm gathering is that this is actually a separate thing from autism but perhaps the two conditions co-occur quite frequently? Or is there no link at all?

Anyway, my understanding now is that:
a) alexithymia and autism are different things.
b) alexithymia isn't lack of empathy in the sense of caring, just in the sense of understanding the emotional world (of self and others).
c) it's a total myth that autistic people lack empathy??

When I think about my DS, he is so loving but he just doesn't always 'get it' if that makes sense? So we'll connect over, say, his recent huge enthusiasm for collecting stones (i.e. I will meet him on his level) and it's so sweet, but if I suggest something different then he doesn't quite know how to deal with that. And I am constantly affectionate towards him and try to say lots of positive things about him/ what he's done etc (I'm paranoid he will get bullied and feel 'stupid' etc at school so I try to be extra affirming) - which he really likes, I know he does, but there is often no obvious response.

I suspect that emotions in the self and others are a type of sensory stimulation. Like other sensory stimulation this can maybe be overwhelming in asd or difficult to process. Often people with asd are hyper empathetic. This combination of factors, coupled with difficulty managing change or difficulty with social cues and interactions could present as them appearing to not care (avoidance of the stimulus) or becoming distressed themselves. Neither indicate lack of empathy/ caring.

When I was diagnosed with Aspergers, I was told that one of the potential diagnostic criteria was a lack of distinction between objects and people. But it was not that ASD folk see people as objects, it's the reverse - they can see objects as people and develop strong emotional feelings about them.

When I was very young I once cried for 20 minutes because a tent was burned down as part of a show. I just felt horribly sad seeing something destroyed, and really hoped it had served it's purpose and had a good existence. I would also develop empathetic emotional responses to toys or treasured objects (not just teddies or dolls, but random things) and feel really bad about disposing of them.

That diagnostic criteria might have been updated since then, but it always resonated with me.

There is a link between Alexithymia and ASD - well according to the research Bird has done - "Alexithymia also frequently co-occurs with autism spectrum disorder (ASD)".

This paper published in 2016 by The Royal Society is good, if you want to find out a bit more: royalsocietypublishing.org/doi/full/10.1098/rsos.150664

I feel very protective of those with ASD too and think they have a hard lot in life trying to fit in with the rest of us.

@cometinmoominvalley your experience sounds so very similar to mine with my DC (8), however he's never been down the ASD route as nobody has ever really picked up on exactly what might be the issue.

Your further comments resonate - really high pain threshold; quirks; hugs for his best friend after school; warm - and someone else mentioned huge investment in one topic (my DC has two - think Star Trek and Lord of the Rings - total immersion and can answer ANY relevant question correctly).

The lack of empathy is more about not being able to understand other people's emotions and facial expressions.

@cherryblossomgin ^^ this is what led me to take control of the situation out with the schools (distinct lack of ability and) resources. I was recently told by the SENCO that "your son has no empathy." The irony of her delivering this statement with little or no emotion was not lost on me.

So I went to a child psychologist. Cognitive empathy can be taught, she said, in school. The "empathy" HE allegedly lacks is because of early years trauma and self-preservation. The reason he responds particularly negatively to the SENCO is because she shamed him at school when he wet his pants. She's also the Reception teacher.

There's going to be quite some unpicking to do, but it seems that his response to this particular teacher is well within the realms of defence and therefore SHE sees him as lacking in empathy. He also had a very difficult start to life (birth, SCBU, multiple hospital admissions, hands-off / absent dad etc) which compounds this early years trauma diagnosis. Might this be an avenue which you could try looking at?

His dad (STBXH) is a sociopath / has NPD by the way (as does his grandfather / great grandfather...) - there are inherent traits but I'm clearly going to get some help with it with intervention from the child psy - my DC(8) will be given the best chance possible to stop the cycle and hopefully soon be able to function as a normal human being

@MephistophelesApprentice that's really interesting! I had interpreted it the other way round. Oddly enough I was the same with certain inanimate objects, especially if they were cast aside in favour of newer ones it would really upset me. Or if I let go of a helium balloon, I wouldn't be upset about losing it really just the thought of how lonely it would feel floating higher and higher and not able to come back .

It's absolutely not true that people with asd can't empathise op so please don't worry about that. From what you've said about your ds is clear that he does.

I know it's already been said but every person you meet with asd really is different from the last.

I won't comment further because I haven't rtft and don't want to repeat anything. I have an 11 year old with ASD and have diagnosed myself too because I'm exactly like her!

Bloody hell Scooby she sounds appalling! My DS still has accidents at home at times, still wears pull-ups at night and has had the occasional incident in school (not this year but when I'm reception). I would be so angry and distressed if anyone shamed him for it! What is she doing as a SENCO or reception teacher?

I have asd (dx last year) and I definitely seem to show emotion differently to others, and I can't always relate to how they are feeling. For instance, I moved countries to live on the opposite side of the world when I was mid-twenties; I did it quite suddenly on a whim, and I genuinely didn't understand why my mother was upset since I was so happy and excited.

On the other hand, DS has asd and he's a lot more caring/loving than I've ever been and seems quite in tune with how people are feeling. So he bucks the lack of empathy stereotype, but he's got the stereotypical ability to remember endlessly long strings of numbers and an uncanny ability with complex mental arithmetic.

So yes, each person with autism has different traits - none are necessarily 'bad', just different

Every autistic person is different! I have a dd whose asd and females tend to be different to males with autism.

In a nutshell autism is just a different wiring arrangement in the brain, it's certainly not a disability in it's self (it is often diagnosed alongside other conditions though). The net result is a different way of looking at the world and processing information, this can be to the persons advantage (most of our famous scientists were autistic!)

They do have empathy but can struggle to relate to things that do not concern them eg why should I be sad because x happened to y, it doesn't affect me, but they can be loving and caring.

Try not to worry, not to over analyse the situation and not to accept limits - they are capable of everything. People will tell you they can and can't do things, nobody knows, it's too individual.

For inspiration - dd is at university and at your sons age she was still rocking in the corner of the classroom.

Hi Cometin - my son has ASD. I'd say the problem isn't that he has no empathy but that he can't read body language so he misses emotional cues that others would get naturally. So he may seem to be not responding when someone is emotionally distressed and that comes across as a lack of empathy but he's just not picked up on it.
For me personally it helps me to understand him by thinking that body language is a foreign language to him that he doesn't speak. So if someone was explaining how they felt to me in a foreign language and I didn't understand them it wouldn't be due to a lack of empathy just a language barrier, it's the same for him with non verbal communication.

It's the social communication difficulties stopping him accessing other people's feeling and responding to them in 'their' language, if that makes sense.

Btw- I'm only speaking for myself and our experience with ASD not for others!

@cometinmoominvalley - What is she doing as a SENCO or reception teacher?

Honestly I do not know. He wet the bed up until two weeks to the day his dad moved out also - so we know it's anxiety related. Utterly appalling behaviour from someone in that position of authority

My 11yo ds has asd, and is not lacking in kindness, in fact is extremely kind, and not emotionally cut off at all. But he does struggle to see other's intentions where most people would, and this can mean eg he misunderstands or overreacts to a comment. I think "empathy" wrt asd means more theory of mind - automatically or instinctively knowing why somebody else has done/said something so therefore being able to react to it appropriately. I don't think it means unkindness or emotional detachment.

its a real learning curve isn't it.
my son struggles with his own emotions - sadness, anger, fear all feel the same to him and he can't really tell which he is feeling, so he muddles them up with other people. He can see they are negative or positive and have a guess at what caused them - but he might think someone who is scared is angry with him for instance because their voice goes shriller or he can feel their pulse quicken. He is much more sensitive to changes in people than my other child.

My Ds2 has autism.. not high functioning but somewhere further down (fully verbal, but special schooled and needs a fair amount of help with daily life) He definitely has empathy.he is kind to people and animals and hates to see anyone distressed. BUT he doesn't read people and unless the clues are blindingly obvious, has no idea how he should respond..he will copy others to try and show the appropriate emotion. When my Dad died it was (objectively!) interesting to see his reaction. He watched people at the funeral carefully to try and imitate their actions and words, like a script. He understood there was sadness but couldn't display it himself. He is one of the nicest people to be around I know, but his emotional responses are just different..not worse, or better, just different.
Tiny things upset him terribly... other people doing 'bad' things are incomprehensible to him and cause him huge anxiety and I try to shiled him from the news as much as I can because he is terrified of things he doesn't understand. He's nearly 22 now.

Having said that, he is still gaining skills, not just in daily life but it emotional understanding, but it is a very slow process.

cometinmoominvalley I'm very glad to hear I'm not alone! Hated replacing things with new things, always felt like a betrayal.

MephistophelesApprentice my dd gets similar. It's makes life very difficult for her and also leads to hoarding. Did you find any strategies to help yourself?

Have you heard of “Theory of Mind”. It’s the idea that we assume that other people think and feel as we do. There’s a theory that people with autism don’t have a theory of mind. I’m not convinced about that but I have found with ds that he doesn’t respond well to the “how would you feel if I did to you what you did to me?” line of reasoning. He doesn’t put himself in other people’s shoes easily. That can look like a lack of empathy but it’s not that simple.
When his own motivations and feelings aren’t complicating a situation, he can identify with people’s emotions and predicaments. If anything I’d say he’s more sensitive than most kids his age.

A simple example is going first in the line. It feels good so he wants to be first every time.
Most kids understand easily that if it makes them feel good, it probably makes everyone feel good, and everyone should get a go fairly.
Ds would need a guideline/rule for that situation to get past his own, very strong, desire to be first. He wouldn’t get to that solution by himself because the reality of his own desire is so much stronger than a vague, barely grasped notion of other people’s desires. But he would find it deeply, unsettlingly unfair if someone cheats or breaks the rule.

But he’s the first kid to get help if someone falls and gets hurt and would worry deeply about his friends.

A simple example is going first in the line. It feels good so he wants to be first every time.
*Most kids understand easily that if it makes them feel good, it probably makes everyone feel good, and everyone should get a go fairly.
Ds would need a guideline/rule for that situation to get past his own, very strong, desire to be first. He wouldn’t get to that solution by himself because the reality of his own desire is so much stronger than a vague, barely grasped notion of other people’s desires. But he would find it deeply, unsettlingly unfair if someone cheats or breaks the rule.

But he’s the first kid to get help if someone falls and gets hurt and would worry deeply about his friends.**

I think we are parenting the same child!

Haven't read the whole thread, but I agree with PP's re: theory of mind.

My asd daughter can empathise when someone is upset etc, but doesn't seem to understand that we don't always know what she is thinking.

It's like she expects us to be able to read her mind. And I suspect it works the other way too - that she doesn't realise that we can have different thoughts about something than she does.

Probably not explaining it very well!

I find my DS has great empathy for people in situations he can relate to. If someone suffers something he had experienced or fears he will be very upset.

Sometimes people are upset for reasons he cannot comprehend, he doesn’t seem to be able to put himself in their shoes.