The ‘Hidden’ Parts of ASD

I am very open about Tyger’s ASD.  I don’t want him to ever feel ashamed to be autistic and I am always keen to spread awareness so I do talk about it quite a lot.  It’s not like I shout, ‘My child has autism,’ at everyone I come across (the postman, for example, does not know and as I mention so often he’s probably the person outside of family I speak to most) but it does tend to come up  – fairly naturally…I think – quite quickly if I’m talking specifically about Tyger.  (Whereas my conversations with the postman tend to be centred far more on my family’s Amazon addiction.)

At this point the reaction is always the same: complete surprise (to finding out about Tyger’s ASD; not about the Amazon addiction, which is not very surprising at all).

‘Really?  I wouldn’t have known.’

And why would they?  That’s the thing about ‘hidden disabilities’: they’re…you know…hidden.  I wouldn’t expect most people to recognise Tyger as autistic and I certainly don’t think people would realise I am (and I’m coming round to the idea I am, in fact, autistic since this post).

Tyger Hiding
ASD can hide better than a three year old.

And maybe that’s not a bad thing.  There’s still a lot of stigma attached to ASD and if people can get to know someone on the spectrum without being influenced by their own preconceived notions that might be positive.

ASD often being so ‘hidden’ can have huge drawback, though.

For one thing, people find it hard to understand why someone on the spectrum (or with any hidden disability) can do some things but not others.

I understand.  I find myself doing it.  Tyger is a particularly verbose child and can prattle on about anything and everything so why does he get stuck on one word or phrase and repeat it again and again and again??

Of course, I know why.  I know it’s because he likes the repetition and probably the sound of the word.  I know it really but I still ask.

If I find it hard to accept there are often things Tyger simply can’t do – or can’t not do – I imagine it’s even harder for other people.

I also worry people will judge me for not doing things because it seems like I’m perfectly capable.  I think I play a sociable, confident mum passably when I’m around people.  I can chat, I can even initiate conversations, joke, offer to help with immediate things like making tea or holding someone’s baby whilst they nip to the loo.  I think I do a reasonable job of pretending to be a normal human adult…okay, maybe a slightly ‘odd’ human adult with eccentric taste in clothes (and hair colour) but no doubt that adds to the illusion I’m ‘confident’ and don’t care what people think.

Other people don’t see me go home, collapse on the sofa and sit like a zombie.  I didn’t even connect my exhaustion with being around lots of other people until very recently.  I remember for a while at Uni I’d get home early afternoon and was often so sleepy I dozed on the sofa before I was able to study or do housework.  It didn’t occur to me there may be any connection between spending time surrounded by lots of people and then becoming tired.

So, if I can navigate a toddler group or university tutorial or job (back when I had a life that didn’t involve building things out of Duplo and cleaning up small humans’ bottoms) I think it’s assumed – understandably – I should manage other things like organising a ‘play date’ for Tyger.  In actual fact, that’s something almost entirely outwith my ability.  I realise how ridiculous that sounds.  If someone else goes so far as to basically tell me a date and time to be at their house/a cafe/whatever with the boys I can just about manage that (though, may experience a lot of anxiety) but the thought of actually taking any of those steps myself is as difficult as running a marathon (something else I could do in theory but in reality just isn’t ever going to happen).

Seriously, these Sketchers are the only trainers I've owned for about 15 years - running a marathon is not going to happen.
Seriously, these Sketchers are the only trainers I’ve owned for about 15 years – running a marathon is not going to happen.

Part of the discrepancy between what people with ASD can actually do and what it might be assumed they can do is down to ‘masking’, which I’ve written about before.  This is when someone on the spectrum ‘masks’ their ASD whilst around certain people.  Exactly what masking may include depends on the individual but things like stopping themselves from stimming (repetitive movements or sounds like hand flapping, shaking their head back and forth, jiggling their leg, constant humming etc.), forcing themselves to make more eye contact, not covering their eyes at bright lights or their ears at loud noises, chatting to people when they don’t feel like it could all constitute masking.

The problem with masking is it isn’t sustainable.  It’s very tiring and there’s every chance the build up of sensory and social input will cause complete overload at some point.  So, whilst it may appear to the outside world that someone with ASD is ‘coping’ fine or perfectly able to do all sorts of things the outside world doesn’t see the impact and aftereffect once the autistic person is away out of sight.

Generally, I’m pretty lucky in that I haven’t experienced much bigotry surrounding ASD but it’s still always at the back of my mind and I also know a lot of people on the spectrum or with kids on the spectrum aren’t as lucky as me.

So, if you know someone who’s autistic and they say they can’t do something or a parent says their child won’t cope with something, please believe them.  They are likely to know better than you.

A child who can cope with loud noise in the context of an activity they enjoy doing might not cope with the noise of a birthday party.

A teenager who ‘seems’ perfectly ‘normal’ might still genuinely need to sit on that specific seat on the bus.  If they ask you to move they’re not being awkward and they haven’t been ‘indulged’ or ‘spoiled’ by their parents; they genuinely need to sit on that seat to avoid a much worse situation than you having to move to a different seat.

An adult who has a well-paid professional job might not be able to cope with going swimming alone.

You don’t have to understand ‘why’ any of these things are so hard (though, it’s nice if you try) but please accept they are and – as always – be kind.

 

Linked with:

Sons, Sand & Sauvignon
My Random Musings
my petit canard
Mummascribbles
A Bit Of Everything
If you liked this post feel free to share:

32 Comments


  1. It’s well documented that girls and women ‘mask’ autism compared to boys and men who don’t. It seems to be one of the things that differentiate autism between the sexes. The problem with masking is that, the better you are at it, the more likely people are going to think that you don’t have autism but masking takes effort and lots of it. I have a lot of years worth of coping skills behind me but age has made me more accepting of my limitations so I’ve stopped putting myself into situations that require such effort unless necessary. Even if understanding is lacking, a little kindness goes a long way – as you say. #SpectrumSunday

    Reply

    1. Absolutely. That’s why women are often diagnosed so much later and probably why there appears to be fewer women with ASD. Interestingly, Tyger masks very well for a boy. Not knowing I might have ASD meant I had no idea I even was ‘masking’ (other than the constant feeling that I was ‘different’ to other people and much more…in my own head if that makes sense) let alone that it was taking so much out of me. But, now it makes sense. I have often felt really tired for seemingly no reason but now I know it’s probably connected to either masking in social situations or sensory overload. I think it’s sensible of you to know your limitations! I think I’m still learning mine.

      Also, sorry I only just approved your comment and replied. My spam filter filtered out your comment for some reason and I’m not used to checking yet!

      Reply

  2. We have so much common ground in our thinking it is sometimes like reading my own thinking. I totally agree with you that being kind is the way forward. I also am open about my big lad having autism and don’t hide anything but I also don’t display it, wear the t-shirt or anything. I want people to know the boy before the diagnosis. Great post! #anythinggoes

    Reply

    1. Thanks. It’s always nice to come across someone else writing the same views you hold. I think being kind is a good rule of thumb in general!

      Reply

  3. As a mother of a four year old boy awaiting an autism assessment this post drew me in. I talk about my son a lot too especially on my blog for the same reasons as you. Because I am not ashamed and to raise awareness. I whole heartedly agree with everything you haven’t written in this post especially the part about people being surprised. I once had someone say to me “but he doesn’t look like ‘one of those'”. For the first time in my life I was too stunned to speak. If only we could tell by looking eh? I wouldn’t still be wondering and awaiting assessment two years after flagging it up.

    #marvelousmondays

    Reply

    1. Yes! It wouldn’t take so many people months and even years to get diagnosed if it was as simple as any old person spending quarter of an hour with them!

      Reply

  4. What a great post for raising awareness and things to look out for, I see traces of behavior here in some of my children. #MarvMondays

    Reply

  5. Very well explained. I entirely agree that this is the attitude people should take – you don’t have to know why (or even want to know why necessarily), but you do have to learn to graciously accept situations, needs and people as they are. If people also want to try to understand, all the better, but at least don’t be the petty, ignorant person arguing with something that can’t be changed & making everyone’s life harder. #marvmondays

    Reply

    1. Unfortunately, there are a lot of petty ignorant people around. Fortunately, I don’t come across them often.

      Reply

  6. Such an endearing post. I really feel for you and completely take on board the message of this post. My parents have always worked with autistic adults and children so I have some experience of the spectrum of traits that may or may not be present. I’m off to share this post xxx MMT
    #marvmondays

    Reply

    1. Thank you. Your parents must be very kind and patient. I imagine it’s very challenging (though incredibly rewarding) work. I know I can struggle sometimes with my two and they’re my own children!

      Reply

  7. I have an almost three year old waiting for assessment (They wont see her officially until she is four) and I feel very much the same. There is nothing to be ashamed about, and actually I want a diagnosis for our daughter, whatever that is. I hate that everyone just assumes that she is naughty or whiny or making a fuss over nothing, I want to be able to say to the people who look and stare, “Hey, she has ASD, please don’t look at us that way”. Thank you for this post, it’s great to raise awareness. #abitofeverything

    Reply

    1. They won’t see her until she’s four?? That’s ridiculous. Tyger got his diagnosis when he was about three and a half and the whole diagnostic process was started when he was about two and a half. It’s a shame there’s such a discrepancy depending on where you happen to live.

      Reply

  8. I love that when I’m reading your posts I am forever learning, but you also make me laugh. You have such a wonderful, easy style. I hope lots of people read this and take your message on board. Thanks for sharing #abitofeverything

    Reply

    1. Thank you so much; that’s exactly what I aim for.

      Reply

  9. My teenager hasn’t gotten any remarks said to him – yet – but I am vigilant when we go out in public, ready to defend him if anyone does say something. However, I am fortunate to live in a town where most people kind of stay to themselves. Every now and then, I will see a person be very vocal about their opinions to a random stranger, usually it’s because they are having a bad day but I agree that we should be kind and try to understand. By seeking more understanding, we are seeking knowledge and knowledge is power. So is empathy, in my opinion. #abitofeverything

    Reply

    1. I’m really glad your son hasn’t had any remarks at all. I can understand you still being vigilant, though! The more I learn – about everything really – the more I think kindness and understanding are the way forward with anything you come across.

      Reply

  10. My brother is autistic and I do like to read more on ASD and love the way you have explained certain things here! I’m still an outsider looking in but try to accept and understand him as much as possible. Tyger sounds like he has a great mummy standing by him, you should be proud of yourself 🙂 xx #abitofeverything

    Reply

    1. Thank you. The fact you try to understand and accept him and his ASD is invaluable to your brother, I’m sure. It makes all the difference to have friends, family and professionals around you who make that effort.

      Reply

  11. Omg the exhaustion after social is a killer as it takes up so much of my resources so can totally identify with that!
    I know what you mean about masking the only downfall is that it is ridged with rules so if situation is different I struggle to adapt and tend to mess up. Plus if x amount is happening only have a short capacity to think so if I am overwhelmed I tend to breakdown when I pass my threshold.
    It is frustrating when people say oh I never knew, ypou could never tell. I didn’t know autism had to be a certain way, I know people stereotype us autistics with sitting in a corner flapping it is not true. Ok I will be honest for me therm comments are from people who are strangers and don’t know me, I think I have more obvious ‘unusual bvehabiour’ so most would know (as much as I hate to deny it). #spectrumsunday

    Reply

    1. I only very rarely end up in very different social situations but I think I’m the same. I also suspect I have a tendency to slightly ‘overshare’ in social situations because I hate awkward silence and because I hate to feel like I’m lying even if it’s just omitting something most people wouldn’t say. On the flip side, sometimes I’m so conscious of the fact I overshare I probably don’t say things I *should*.

      I absolutely agree many people have a very narrow view of what autism looks like. I probably did too until recent years, if I’m honest (hence why it never occurred to me I might be autistic). I genuinely don’t know what people think of me. I suspect they think I’m a little odd but I am also probably paranoid (doesn’t mean I’m wrong, though!).

      Reply

  12. Thank you. I think masking is a huge comment on our society and our ability to enjoy each other as people rather than perceptions. I can understand why it would be exhausting, as I do the same with my anxiety presentations. Switching off is so important but we don;t always realise at the time the trigger for the tiredness. Thanks for sharing #abitofeverything

    Reply

    1. Yes, I have anxiety too and there’s a lot of overlap I think. I think I’m getting there with figuring out why I feel the way I do at any given time but it’s taken 29 years! Haha.

      Reply

  13. This is such a powerful post. I love your voice and how you put across your points. I think the issue is that people often have a stereotypical view of what autism should look like, or what depression should look like, etc and hence it becomes incomprehensible to them when presented with another picture. The easiest thing to do is to simply discount and then assign what they think should be appropriate…because that makes THEIR world easier. #abitofeverything

    Reply

    1. Absolutely. The number of times I’ve actually seen someone on a forum arguing with an autistic person or parent of an autistic child about whether something is or isn’t an autistic trait is staggering. I really hope I don’t cling to ignorance in that way on any subject.

      Reply

  14. Thanks so much for sharing – I had no idea about ASD before reading this, and I think it’s a subject that more expectant parents, such as myself, should know about. #abitofeverything

    Reply

    1. I think it would be a good idea for parents to be educated in what to look out for (perhaps at antenatal classes). The only reason I realised with Tyger was because my sister already had a diagnosis by that point otherwise I’d have had no idea.

      Reply

  15. Hi Nym, its always interesting to read your ASD posts. Its really interesting to hear about how it can manifest in different people, adults and children. It sounds like you and your children cope really well, and im sure thats partially down to your deep understanding of it. Thanks for sharing this on #MarvMondays. Emily

    Reply

    1. Deep understanding…or total obsession. Haha. It is really fascinating to me how ASD can present so differently in different people and whether it is always even the same condition or several different ones that all get lumped under the same heading for now because we lack a better understanding.

      Reply

  16. So lovely Nym! I saw my auntie and uncle for the first time in years last October and when I told them he was autistic, their response was “is he? Are you sure? He will be ok!” It is safe to say I wont be seeing them again in a hurry. People make assumptions and don’t believe invisible disabilities are real, and sometimes the things you see on the surface are far from the reality for those affected. Thank you for linking up to #spectrumsunday, really hope you join me again this week! xx ps. Love the new look 🙂 xx

    Reply

    1. On the whole my family are great. The fact my sister has a diagnosis and my dad is certainly autistic, too, helps. My aunt also works with a lot of adolescents who have ASD and a cousin on the other side of the family has a diagnosis. But there are family members I know wouldn’t be as understanding and perhaps don’t even ‘believe’ in hidden disabilities. I don’t see them much, either.

      Reply

Leave a Reply

Your email address will not be published. Required fields are marked *