How to make an Autistic person normal.

I can hear your hackles rising from here.

It’s not a nice thought, is it? How do you change someone who functions in a different way enough that they can seem the same as everyone else,and should we?

Does this cure the person? Does this make them better? Does this treat Autism as some kind of illness instead of a lifelong condition?

I’m asking all these questions because it’s essentially what happened to me.

When I couldn’t cope with the texture of mushrooms because they made me retch, I was told we would all stay at the dinner table until my plate was clear.

So I practiced swallowing grapes whole when I was alone. If I could swallow a whole, large grape, then I could swallow a mouthful of food without chewing, without having to deal with the texture beyond the swallowing of it.

I don’t recommend this as a course of action! It’s not sensible. I was lucky not to choke. It is not a good idea, I was an idiot child trying to find my way.

I learnt very early on, that if you draw attention to things that bother you, then other children (and sometimes adults) do them more.

So when the table was laid, I would make sure to move the knives and forks and spoons of the cutlery that had had patterned metal handles. Touching them hurt me. It felt horrible. But if I asked to swap them later I would be told not to make such a fuss, doing things quietly worked better.

But I couldn’t stop people cutting their food on their plates. I couldn’t stop the sound that set off reflex hallucinations in my tastebuds and made my food taste of what I can only describe as “that flavour you get when you lick your finger, put an AA battery’s end against it, and then lick the opposite end of the battery”.

I’d press my head against my shoulder and try to muffle the noise of the worst of it, but I couldn’t block it out. If I asked people to stop sometimes they would laugh and do it more, sometimes they would try to stop. But I couldn’t predict which it would be.

I didn’t understand why they would do it when it hurts.

But I learned.

I learned people laugh at you and call you names if you’re a teen girl who likes bright colourful leggings over bodysuits and culottes (it was the 90s, insert fashion faux pas of your era here).

And although I argued it at the time, I learned that what I wear is important to other people, even if it’s not to me.

When I was alone I would have the time and space to meltdown. Sometimes at school I would hide away in the loos. Sometimes I’d hide in a book. Sometimes I’d hide in being loud and confident and opinionated.

Sometimes I’d fail to hide, and shutdown, and then I’d have to find an appropriately teen-angsty reason for it, because I knew that other people weren’t doing what I did.

I learned how to be normal.

I learned how to keep my stims private. I’d practice not moving. I’d concentrate on not doing them.

Sometimes if it got too much, I’d excuse myself so that I could find a place to be alone for a minute and stim. Like a secret smoker getting her nicotine fix behind closed doors. Because grown ups don’t do that sort of thing.

And what good has it done me? I’ve suffered from depression and exhaustion. After one particularly nasty bout of workplace bullying that was handled laughably, I had a bit of a breakdown. A counsellor said I was burnt out, and I was. I was exhausted. Utterly shattered by presenting this constant façade of normality to the world.

I still hadn’t realised I was autistic. I’d worked as a Learning Support Assistant, helping autistic teens, as one of my many jobs, and it still didn’t click. Even when they said things like, “You really get it!” I didn’t realise.

I have been battling myself for years. I have been fighting every day to present someone to the world that you will like.

And you still don’t like her! I don’t blame you. I don’t think I like her much either.

The people who like me in this world, are the people who have seen the real me. This voice. This one I’m using now.

So why did I learn to hide it, and how the hell do I let it out?

Yes. You can teach an autistic person (not all, not everyone, and never completely) to behave like everyone else, but why would you want to?

Somewhere along the way I lost me.

I knew I was here but I couldn’t find who that was. Was I Work-Rhi? Drunk-Rhi? Mum-Rhi?

It’s not that those people aren’t a part of me, but they’re a construction. They’re a wall between you and me.

What was done to me, was done in utter ignorance of what I am and what I needed. What was done was done because I was being judged by the wrong standards.

There are ways that we all have to learn to fit in. Stims that hurt you or others, need to be swapped for stims that don’t. We all make adjustments. We all grow up.

Three year olds need to learn how to express their emotions with words where possible. We all have to change and fit and adapt, but we don’t all have to fit to one mould. It’s important that we don’t.

So here’s my analogy. Day by day I cased myself in clay. I didn’t notice I was doing it. I was still walking and talking, but each day I clagged a new bit on. Small bits, big bits, all the things I learned.

At first it wasn’t too heavy, but after a while it started weighing me down, exhausting me.

But still I added more. The more I learned, the more I added.

Then one day I read an article about a woman with autism, and that article described me. It described me in great detail.

And I suddenly noticed the clay. It now covered all of me. Every part.
Since then I’ve been trying to crack it open.

Getting a diagnosis was a big step forwards and it’s let me get a hand free.

I’m still working out how much I can chip away at once and still feel safe. I’m a work in progress. A reverse-Rodin.

How do you make an autistic person normal?

You redefine normal.
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Published by Rhi

21 thoughts on “How to make an Autistic person normal.”

  4. I would not want to make an autistic person “normal”. Everyone is unique and I respect and also enjoy that.
    I have an adult daughter who has had autism since birth and I would not change her for the world. She is the sweetest most gentle soul I know. I find that the biggest challenge for her was learning abstract ideas in school. Yet, any lessons that were changed to “visual cues” she took off learning.
    You sound like a really sweet person. Good Luck…and have a great day!

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  5. Your comment about the knives and forks hurting you is a bit like a strange thing I have of all things, about a fireplace!

    It belongs to a friend of mine and when I ran my hand over it, I felt such a physical shock and revulsion. Just writing about it brings the same response though not quite as bad. I think it is some kind of black marble.

    How strange is that?! You write very well.

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  6. Are you me? I almost hope so. You sound marvellous and quirky and fun. Misunderstood by people who are looking directly at you, but don’t see you. I’m waiting on a date for assessment at the moment, so I’m reading up on what life is like for diagnosed women.

    Your blog is a joy to read. I say that with absolute sincerity because what’s the point of lying to a stranger on the internet? You’ve made my day a little brighter, and lightened some of the worries I’ve had about what life will be like when there’s proof I can’t do what others can.

    Thank you.

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    1. You are very welcome. Thank you for such a lovely comment. You’ve made my day 🙂

      I hope diagnosis goes smoothly for you. Just remember that the diagnosis doesn’t change where your limits are, it just means you’ll understand them better. I still often go beyond my comfort zone, I just know what to expect when I do. I know what selfcare will help. You still get to choose how you live your life and enjoy it 🙂

      Thanks again
      Rhi

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  7. And here I am, so used to the screeching of knifes and forks on plates that I forgot that it hurts. But but it doesn’t stop hurting just because I forgot that it hurts. And now I lerned that it is ok that it hurts and that it is ok to avoid things that hurt. So I have to look all over the place for my “cutlery on plates” that I ignored and forgot about already…
    I love how you can put the things I still struggle with into words. It feels like the fogg clears up a little bit further every time I read one of your blogs. Now I have seen an example of how to describe this thing as well and even though I still can’t describe it to “normal” people, I feel like I am one step closer to beeing able to.
    THANKS 🙂

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  8. Hi Rhi, I just recently discovered your blog. I have daughter (Elis), she’s 4 now. She never had any professional diagnosis but since she’s 2 we already had a feeling that she might have autism. I remembered how she would cry on lightning sound, loud noise of car starting, vacuum, blender, then as she grows older, she’s getting used to it but I know certain sounds still doesn’t make her comfortable, I know because she would cover her ears with two hands. When I used to feed her when she’s 2, if I have 4 different vegetables on the plate, she would separate them from one another. So ever since I’ve learnt to do that for her. I put peas on one side, beans on the other side, broccoli and carrots on the other sides. She’s a very keen observer. Sometimes she would see the tiniest fly on the wall ( out of the blue even when she’s playing with her toys). She would notice the smallest freckle on a bean (and she would not eat it). Verbally, she’s delayed. At 2 she wasn’t saying a lot of words. At 3, she started saying a few words. Currently at 4 she could say more words but some with great difficulty. She has learnt to say I love you, thank you and please, etc. And her favorite expressions are: Oh dear, Oh dear me and goodness me. She’s not very fond of hugging as a young child but when she falls or get some or get hurts, I would tell her, “Come here sweetie mommy give you a hug and a kiss to make you feel better”, then she wouldn’t cry anymores and continue playing. Somehow from then on she learnt to hug and at times I would hear her saying, “Hug me”. She’s very creative and imaginative esp with playing with her toys. But she’s not very social, we have a neighbor same as her age which she would play at times but if you put her in a park with lots of kids, the noise is just overwhelming for her. She likes playing snail when we’re in the garden. She would place them all together and watch them as they come out from their shells and slide. Some textures are alright with her, but when she spills something on her clothes, most of the time she wants to change her clothes at once. Though she would play on the sand and would be alright to get dirty. She doesn’t like her hair to be combed and bath is not her favorite activity but after she finished playing with the sand I would tell her we will wash her hands, which is okay for her. She wouldn’t cry or refuse. Then I would tell her we would change her clothes and initially wash her feet and legs, when I use the term wash and not bath she seems to be alright, still I can’t just put her on the shower, it has to be gentle, a process like playing, it takes quite a long time sometimes it works sometimes it doesn’t. Her memory is very sharp. We once brought her to a pet shop because she loves dogs and cats. Ever since whenever she sees that pet shop even of different branch and location she would insist to go or she will cry. She’s starting to read now (when I would read her a book, she would sometimes read 3-5 words) and very good in spelling but writing and coloring isn’t her favorites. My husband has a psychotherapy degree and I’ve been educating myself of autism since we’ve had her but beyond education love, understanding and patience, I think those 3 are the most important characteristics to have on raising her. It’s difficult and a great truggle at times especially when we can’t understand her. When she would go on a meltdown, my husband and I need a degree of self-control and calmness to cool her down. Anyway, I’m happy to see your blog, somehow it gives me hope that one day she can talk more like you do.. God bless and all the best Rhi!

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    1. Thank you so much for telling me about Elis. She sounds amazing, and so do you. So much of your description of her had me smiling as so many things were the same for me as a child. I went through a long stage of not wanting to hug anyone, but once the choice whether to hug or not was mine, I began to do it sometimes. You brought back a memory of how I used to always be ready to run when I flushed the toilet. I hated the sound and so would try to be out the door before it started.

      Having a parent who understands you, and listens to you – even when they don’t experience the same things – is such a powerful thing.

      I still struggle with showers, but love a bath. They are two very different sensory things.

      Thank you again for sharing your family with me. Meltdowns and shutdowns can be so difficult. I had no idea until recently that a “tantrum” was different. I thought all the other children were like me. I described a meltdown as “I wasn’t there for a bit”. My emotions were so big that the part of me that controlled what I do was gone for a while. Slowly it would come back and I would feel so ashamed of my outburst. Even though it was out of my control. Of course my parents thought it was just a tantrum, they didn’t know either. It wasn’t their fault, but if we had all been able to work together to stop what was triggering the meltdowns, rather than punishing them, we would have all been happier.

      Good luck!

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      1. When I saw your first post, I can’t help but read it from top to bottom, and the second, third, fourth post and so on.. While I was reading it, the picture I’m seeing is Elis. Every description, I see Elis. You’re correct that it’s  important to know the cause or reason of her meltdown. We struggled on that before, we’re still learning now but one reason we had discovered, elis doesn’t want a change on her routine. If it is a necessary change, it has to be introduced to her on a slow phase. She has this favorite blanket which she carries w/ her all the time. I know some kids have blankets too but this blanket makes her feel safe and secured, she sort of get strength from this blanket. When she gets hurt we would wrap this blanket on her and she will calm down. Since she’s a baby, she has been using this until now but at least now she has learnt not to carry it with her all the time. Though there was a time when we forgot it so she went into a meltdown in the car. She didn’t stop crying until we went home and got the blanket. Same as putting her socks and shoes before leaving the house. One night while she was playing w/ her toys she got frustrated and started crying. We couldn’t let her stop crying so my husband said, “we’ll take her for a drive”. As we we were in a hurry we forgot to put her socks and shoes on. The drive that’s supposed to calm her down, made her worst. We also learnt not to give her any broken toys or anything that has a missing piece because she has this idea that everything has to be perfect. Although we are helping her to realize that it will not always be perfect, but it takes time I guess. She wouldn’t line up her toys, as what they said autism children would do, but she expects that if a toy car has 4 wheels or a puppy dog has 4 legs, there’s shouldn’t be any missing or if it’s battery operated, she expects it to work. Otherwise she will ask for the battery to be replaced and expects it to work. Probably some other parents wouldn’t agree with this, but Elis learnt to use the ipad on a young age. Fortunately now she learnt to use it moderately. But without that, we wouldn’t know that she’s good in spelling. She would type the word or words and at times pause a video and read the words she sees. That’s also where we found out that she can actually think critically trying to solve games and go through different educational apps. But of course we had to engage her with other activities too, to enhance her social skills. She had barely had eye contacts when she’s younger. At least now she’s trying to make eye contacts. If I’m standing, I would go down on my knees to talk to her so I can be on the same height as hers. This helps her to look on my face. When I’m doing the household chores, I try and explain her what I’m doing, the steps and everything happening. I wouldn’t get much response from her but after a while I would be surprised at times when she tries repeating some words I said before as she go to the kitchen, bathroom, etc. Furthermore, I tried to explain to my friends before about Elis autism, but they would only say, “Oh she’s still young, she’ll eventually change.” So I would politely reply, “yeah maybe”. But deep inside I know that Elis is special and different from other children and I know she will probably develop but autism will always be there. I know it’s still a long way. We just have to accept it and embrace the journey as she go along, learn with her, love her for who she is and appreciate life on her perspective so we can understand her better and live w/ her autism as a blessing. Thank you for being an inspiration Rhi. This is probably the longest I’ve written to anyone about Elis. I didn’t have any hesitation telling it to you even if we barely know each other because I know somehow this writing helps me to accept Elis more. Wishing you and your family a Merry Christmas and Happy New Year!

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        1. Merry Christmas to you too! Gosh, Elis really does sound so similar to me. I also had a blanket. Meltdowns if it was left behind. It is my… safety. I now carry scraps of fabric (the right sort!) in my pocket and hold them when I feel stressed. Fabric is my stim of choice. It helps me concentrate, it helps me listen, it calms my brain in strange places.

          Perfectionism and needing things to be right has always been important to me. When I was small my parents used to let me take broken things apart so that I could see where it had gone wrong.

          It sounds like you are doing a wonderful job. I never really got the hang of eyecontact, but I do lip-contact instead, and no one notices the difference. Eyes can be painful, but lips help me process language quicker.

          Elis will grow and change as we all do, but she will go those things in her own way – like me. And those ways will be amazing.

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          1. Gee.. I hope so, it’s still a long journey.. I have to observe keenly if elisha is looking on my eyes or reading my lips. I might be wrong that she’s doing eye contact. Thanks again Rhi! 😊

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