Help understanding autism

[Candice34]

I'm looking for help understanding autism as it's causing issues in my family. The girl in question is 14 and has been assessed for autism several times but not officially diagnosed. I know it's hard to get an official diagnosis at times.

What I'm trying to find out is, if you are autistic, do you know you are being autistic?

In my head, I would have thought your brain is telling you to do this and you think it's a normal behaviour to do. For example she made a big thing at a family meal because one piece of food touched another piece of food on her plate and she couldn't eat the food because it was contaminated. However she told everyone that she'd read something about autism and food not touching so now she has to behave like that because she is autistic. This is what I don't understand as if she knows she is doing it, surely we can support her and help her understand that it is ok if food touches etc.

Other instances have included us all ready and waiting to go out, but we all had to wait for about 15 minutes as she was watching something on Netflix and because she is autistic, she can't stop a video until the end as it would upset her balance. They didn't attend another family day out at very short notice as she decided she decided seeing her family was too overwhelming and she needed time to "rebalance her equilibrium". Another one was paid for museum exhibition to celebrate another family members birthday, but she decided on arrival that she didn't want to do it because she's autistic and couldn't cope with it. She wanted to sit in a coffee shop and watch Netflix so her and her mother went and did that while the rest of us did the exhibition the birthday boy wanted to do.

None of us know how to handle her autism and her parents say we just have to do as she says and follow her lead. Callous as it sounds, family members are getting irritated at everything revolving around her and her wishes and we all have to jump to her tune. I feel stuck in the middle as some want to plan things without her and I feel bad for leaving her out but at the same time, others are getting upset at her turning up and everything having to change because it's affecting her autism.

What is the best way of handling her autism? How do you do it to keep everyone happy in family situations like this?

My niece who has autism often says things like "Laura has autism and so she does....." when talking about herself so this could be a variation on that

Gosh yes to the different textures etc. We have Heinz tomato soup as the only "okay" soup. My DC rather shockingly liked korma once. (She doesn't normally have anything saucy or mixed) We have tried to recreate this Korma and it ended in silent tears as it "just wasn't the same." Genuinely sad child as she had been so keen to please us as she knows it's tricky and so keen to try again. We have no idea how we made it that time...

It's where a lot of the love of "beige foods" comes from too. An X branded fishfinger will uniformly be the same each time without any surprisd. A plain McDonalds hamburger will always be the same each time.
Mealtimes can become really frightening for children as they want to please and "be good" and yet it can be overwhelming when they have sensory issues and even more so when it is unpredictable.

People can be so judgy (I probably quietly would have been before I had DC with sensory issues around food...We cooked from scratch, veg etc. Now it is tricky)

There is a higher than average number of eating disorders amongst autistic children.

My other autistic child is fine with all food! (But has other issues..)

An easy to read book which I often recommend is called "Can you see me?" It is SO good for parents/people who work with children to read as it is so simply explained and partly through the eyes of a child.

Not all people will present in the same way/have the same issues but it does go part way to explaining what it is like and is certainly a good starting point OP. I found so much recognition in reading it and recommend it to parents everywhere!

Has she always been like this?

It's hard for me to comment as my son has been diagnosed at 2/2.5 years old, there isn't any ambiguity.

I'm curious if her behaviour has changed? And if her anxiety is so crippling what are the school doing?

@L1ttleSeahorse, this is exactly one of my DC with food. Everything needs to be the same every single time so they get comfort from the uniformity of processed food, its safe and can be eaten without any surprises. They also see food as an unnecessary inconvenience, doesn't like tastes or textures or feeling full, so bland foods are a way of eating without that unpleasant (to them) food feeling.

My other autistic child will eat everything, including non-food items, and won't stop until they are sick as they don't have the sensory feedback of being full.

Hello, autistic adult here just popping in to recommend a Facebook group for all of you who want to better understand autism. The group Autism Inclusivity is run by autistic adults with the express purpose of providing education and resources to allistic (non-autistic) parents/family members of autistic people, from an autistic perspective. Many parents credit the group with transforming how they understand and relate to their autistic children/family members. I’m not sure if I’m allowed to include a link to the group here, but if you search for it on Facebook you will easily find it!

An example with food contamination sounds like she has OCD and germophobia. Does she wash hands often and vigorously? Does she wear only clean clothes at home?

While OCD and autism are 2 different conditions, the symptoms overlap and very often autistic people have OCD. That's great she read about autism but obviously she cannot diagnose herself.

Autistic issues with food touching is usually a sensory thing, not a germophobia thing.

@mutationseagull

Autistic issues with food touching is usually a sensory thing, not a germophobia thing.

Agree - nothing to do with germs 🙄

I'm autistic and highly controlling and ritualistic of food- some things can't touch and my husband makes sandwiches all wrong. Now that I'm an adult I can cater to my preferences quietly, when I was a teenager I had no choice.

I never got the opportunity to say no to going out, even when I was in my early 20s when my gran died we had a family get together for my grandad's birthday a couple of days later and my mum screamed at me for saying I'd make my own way a few mins later in my own car- I just needed some space because I was overwhelmed but for some reason for the neurotypicals it was really important that we all arrive together in the same car (with my dad's smelly air freshener, people talking to me and irritating music).

The thing is that things that don't seem a big deal to you are a massive deal to her. There's times when you've got to push her out of her comfort zone and there's times when you've got to respect what she's saying.

She's doing a great job of understanding and regulating her behaviour by the sounds of things, women mask a lot and those sensitivies anxieties and stressors end up turning inwards on self esteem.

Just because you don't understand it doesn't make it real.

@Candice34

I'm so sorry to anyone I've offended with my choice of words in the first post. I didn't mean to do that. I'm trying to understand how she is thinking so I can try to see things how she does, so I don't inadvertently do the wrong thing and make things worse for her.

Like if she was colour blind, there's pictures online that show what colour blind people see so it's fairly easy to understand their difficulties.

Autism is something I know little about so it is hard for me to understand how she is seeing/feeling/thinking things but finding out more about it is something I mean with care for her not nastiness.

Thanks for all the links and comments. I know it's not a "one size fits all" thing and there's loads of different aspects to it so it's been really helpful hearing what people have said with their own experiences. Even just the pie thing. I just thought pie was pie. I've never sat and thought about how the shape, texture, filling and everything else could make a difference.

I'm sorry for flying off the handle a bit at you. It's a sensitive subject for me as I was frequently told how difficult and awkward I was when I was genuinely anxious about things like food and family days out.