What struggles do you have with an autistic child?

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I want to write a story about autistic twins named Hina and Kana. Hina has Classic autism and was born five minutes after Kana was. Kana has Asperger Syndrome. But I need some experiences from parents of autistic children so...

what are you biggest challenges with your autistic child/children? How do you deal with these struggles? What about when you have other parents who tell you how to discipline your child when they act out? How do you deal with the ignorance of others who don't know how to deal with autistic children?

Anything else you guys want to tell me is really appreciated. I would love to have more information from a parent's perspective in my story. Since, being an autistic myself, I can't speak for my parents and know how hard it is for them to deal with me.

A lot of that can be found searching threads on this board. The question is a little broad for me right now, but if you've done some reading and want specific answers about what certain issues look like to us, that would help.

Hi

Here's a list of my 5yr old daughter's behaviour, which I gave to the school. She doesn't have a diagnosis yet, but Aspergers is looking increasingly likely. If you would like me to expand on anything, please let me know.


Refuses to take hands, even in potentially dangerous situations
Stands too close to people and interrupts
Joins in with other groups of people, often appears that she’s forgotten she’s with us, would gladly go off with a stranger
If injured, seeks comfort from a teddy/ thumb, not a cuddle from a parent, even though it’s offered each time.
Often ignores us when we speak to her, don’t know if she’s heard or not, often have to shout at her several times to get a response
Unable to stay focused when being spoken to and difficult to engage if it’s not something she wants to speak about
Does not automatically say ‘Hello’ when visiting relatives. When instructed beforehand, will sometimes comply, in an over-acted manner, that can appear insincere, but will often refuse and appear moody
Mealtimes - will not sit still to eat, wanders around between mouthfuls, becoming very picky about food textures/ tastes, diet is becoming less varied (used to eat anything and everything)
Has to be continually asked to get dressed, will do anything but get dressed
Refuses to wear many fabrics, and various items of clothing, due to feel
Hair combing – screams, insists a gentle touch is very painful
Leaving somewhere, e.g. nursery, friend’s house, swimming pool showers – will not leave when asked, has to be at her timescales, always last to leave from group settings
Out of school activities – inappropriate behaviour, e.g. crawling on floor/ acting as a dog, when supposed to be participating
Cannot sit still unless watching TV
Been told by singing workshop leader that she’s lovely and very imaginative, but goes off and does her own thing sometimes, which they are OK with. Positive comment but raises some concerns.
School – she appears to be unhappy when going in, very clingy, but never clingy at other times
Teachers say she takes a long time to complete tasks, but there’s no doubt that she can do it
Girls do not approach her in the playground before bell, whereas they run to greet others
In line – girls stare at her and seldom speak to her, if they do, she seldom responds
Wants to play with boys but few will play with her
Most days, she says she has played with nobody, but is obviously outgoing and wants friends
Says that children don’t like her because she just wants to walk around the playground and she thinks she may have upset them, but does not know how
For a few months, became obsessive about a friend, wanting to wait for him coming out of class, since then, friend has refused to play with her at school, but plays with her away from school
On leaving school, most kids appear to spot their parent, perhaps smile and walk or run towards them. I’m never sure if she’s actually seen me as her expression doesn’t change, she doesn’t keep her focus on me and meanders.
Becomes very attached to various inanimate objects, e.g. sticks, stones, small scraps of paper. Wants to keep them and becomes very upset if they are lost or thrown out.
Mood swings - goes from very happy to angry in a few seconds, for unknown reasons.

In the Past
Distraught when having nappy/clothes changed
Wanted to be held constantly, would wake up and cry as soon as she was laid down
Would suckle, half sleeping, for unreasonable amounts of time - 90mins+
When in pram, demanded who had to push
Demanded specific cutlery/ dish/ cup
Terrified by loud noises, e.g. vacuum cleaner, Santa ringing a bell
From walking, at 12 months, she refused to sit in a buggy, even when extremely tired and needing a nap and would not take hands, allow us to carry her or wear reins, causing problems near roads


It's a daily struggle in our household. When I ask her to get dressed, nothing ever happens. I could ask her 50 times and she'd still be there doing what she wants to do. No normal discipline measures (e.g. naughty step, reward charts, taking toys away) have ever worked for any length of time. I get annoyed when other mums tell me they are going through the same thing. It makes me feel like I'm an inadequate parent. They seem to think having a child who occasionally has to be told several times to do something is the same as what I'm going through. I could never just put my daughter in her stroller and take her out. She would fight and scream and refuse to go in. I then had to try to walk with her and push the stroller, which we needed for her naps, whilst she struggled to get free. Reins worked for one week, then she'd just lie on the ground, when I put them on. People stare, some think you're being horrible to your child, others think you're not disciplining them appropriately or that they're spoilt. It's impossible to win. It's getting easier now she's a bit older.

On the positive side, she's a highly intelligent, happy little girl and I could say a lot more about that than the negatives.

Hello iheartmegahit,
I'll try to answer...
My son has classic autism, he is 3.5 yo, he will be turnong 4 in september.
I couldn't categorize him as LF or HF because he is HF in some areas and LF in other areas. He has not behavioural issues and he never experienced self-harming. He is somehow "social" and he has friends at school. He struggles with language, he says few words and he is often echoic, so my main issue is communicating with him. Maybe I suffer more for this issue because I'm an NT parent of an autie boy an we're from different planets...
I think it should be a therapy for me to tell our story, so if you agree we can talk about it