Masking

I want to understand what behaviours Lily is masking, how can we help her feel more at ease about them and what soothing things might she also be avoiding because she thinks they are not acceptable?

I remember watching the BBC programme Inside our Autistic Minds where an autistic woman makes a film to show her mum what she has never said or shown her.  I've just watched it again and now I'm wondering how I can get Lily herself to watch it.  It's such a good reminder that we might not know our own children, even when we love them as much as we do.

I can think of a couple of times recently when another parent has said of a worrying behaviour in their child, that it can't be happening because "I would know".  ASD aside, I immediately think of all the little deceits I perpetrated against my own parents as a youngster.  I think about how some friends I thought I knew well changed or how I upset other friends because I assumed they were like me, and they weren't.  Perhaps it's a birth parent's privilege to think you know your offspring as well as you know yourself but I think it's a risky thought. 

My conversation with Lily on the subject was enlightening.  More than that, together we hit on a revelation about the role of her brother in all this. 

Lily found it difficult to identify on her own what she was doing to fit in.  I don't remember the conversation verbatim and there were a lot of really interesting asides but I'll try to script it for you to make it more readable.

Me        I know that you've always worried about fitting in even from when you were in primary 

            school.  I can see now that you had a deep feeling of being different and maybe we have a 

            pre-historic almost animal instinct that tells us that we need the tribe to survive because the

            outsiders will get picked off by the lions.

Lily nods

Me        I remember it really upsets you when anyone comments about your appearance and I imagine

            that is why you now spend so much time on your hair and make up.  Do you feel like there are

            things that you are doing or not doing when you are with your friends that also help you fit in?

Lily      Not really

Me        You said you don't like it when they ask what's the matter?

Lily        Yes.  My emotions show too much on my face.  

Me        But all of us show our emotions on our faces

Lily        Yes, but my friends get emotional about things like homework or stuff at home and they talk

                to me because I don't get emotional about it.  I don't let my emotions out like they do.

Me(confused)        But you told the psychologist you didn't know when you were happy or sad so isn't

                it just that you don't have emotions like them?

Lily        No I do! But the things that are bothering me are all the little annoying things that are

                meaningless to them, all the sensory things like the water that ran down my sleeve when 

                I cycled to school, or the fact the toilets were too dirty for me to use or my lace is undone 

                and now it's wet and flapping against my leg...my head is like a computer with 100 tabs   

                open and there isn't one which seems more important than another, It's easiest if I don't think

                about any of them so I don't know what to say when they ask, "What's the matter?"

Me           Because you think they will just think it is trivial?

Lily           No, because I don't want to give it more power by talking about it, then it will take over and 

                I'll lose control.

Lily took some time describing the way she could hear thoughts like someone just by her ear was saying them over and over, loudly.  She does not feel they are useful thoughts and mostly seems to feel they will get in the way of her doing what she needs to do.  I am guessing this is what is meant by 'intrusive thoughts' .  She went on...

Lily            That is why I started saying to people, "It's my brother" or just "Lucas".  Then they would 

                   just get it and leave me alone.

Me               So wait a minute, so saying "Lucas" was like your most useful mask, and now he's moved 

                    out you can't say that anymore

Lily            Exactly, everyone expects me to be better and I'm not

Me              No your are not but Lily, I think this is really useful to know, because everyone thinks 

                    that Lucas was the cause of your problems but actually, his existence in some way 

                    was helping you.

I can't describe how mind blowing this is for me.  At the worst moments Lucas targeted Lily specifically, not just with taunts and jibes, he told friends and teachers he would kill her.  He stopped her from breathing in two of his assaults and she had a prolonged seizure when they were left alone together one afternoon.  Yet in the bizarre and maladjusted symbiotic relationship that they have, she made use of him.  I suppose one might question whether she would have had so many or such overwhelming thoughts if he hadn't terrorized her and presumably she would have come up with a different masking strategy.  Still, this observation has given both of us an insight into the impact of Lucas' absence on Lily and a definite thing to address which is, what can she say when people as "What's the matter?"

Photo by Samuel Benjamin Hernandez Lopez:

https://www.pexels.com/photo/portrait-of-woman-wearing-mexican-costume-14169454/