Dd, autism and cake - Thread 2

[bendmeoverbackwards]

I had no idea that my first thread would fill up and I am in awe and overwhelmed at the amount of support.

I am going to re-read all the responses and make a plan. Thank you, this has been eye opening.

@EwwPeople no she hasn’t. She’s just like a broken record about how bad things are for her etc. I have suggested many many times - let’s make a plan, does she need my help, I’ve sent her links to courses she could do, volunteering opportunities etc - the lot. Nothing is taken up or even discussed.

Op as the mum of a DC who’s 35 and severely autistic amongst other things I did a quick google about ‘getting stuck’ and it came up with the following. In years gone by I’d have typed out long posts explaining how my child has at times been stuck in time but at 68 I’m all autismed out when it comes to writing and helping others. The latter doesn’t sit easily with me at all but it’s just how it is - I’m fortunate in that my son is still at home with me (along with his care team) and as such I need to keep my energy for him. ❤️

Autistic individuals may get "stuck" on certain years, memories, or developmental ages
due to a combination of cognitive, emotional, and neurological factors. This phenomenon, often termed autistic inertia, monotropism, or rumination, is not a choice, but rather a result of how the autistic brain processes information, transitions, and emotions.
Reframing Autism +4
Here are the primary reasons for this type of "stuckness":

1. Monotropism and Hyperfocus

Autistic minds tend to be monotropic, meaning they focus attention on a few, narrow interests rather than spreading attention across many topics (polytropism).

• The "Rabbit Hole": When an autistic person becomes interested in a specific year, event, or memory, they may hyperfocus on it, absorbing every detail.
• Difficulty Shifting Focus: Because of a "locked-in" state, it is difficult to shift attention away, causing them to get stuck on a topic, time, or event for months or years.
• Reframing Autism +1

1. Autistic Inertia (Stuck in a State)

Inertia refers to the difficulty of starting, stopping, or changing an activity.

• Mental Inertia: Just as it can be hard to start a task, it can be hard to stop thinking about a specific time, especially if it provides comfort or structure.
• Safety in Consistency: A specific year from the past might represent a time where there was high predictability. If the present is chaotic, the mind stays in a "safer" past.
• Reframing Autism +1

1. Rumination and Traumatic Replay

Autistic individuals are prone to rumination—constantly replaying thoughts, memories, or situations, often without reaching a resolution. Autism Parenting Magazine

• Unresolved Events: If something happened in a particular year (positive or negative) that was not fully processed or felt "unfair," the brain may continue to replay it to find a solution, becoming stuck in a "loop of concern".
• Revisiting Memories: This often happens after trauma, bullying, or a social interaction that went wrong, causing the person to relive the scene to figure out what they could have done differently.
• Medium +3

1. Emotional and Developmental "Stuckness"

Some autistic individuals feel emotionally "stuck" at a certain age, often because of trauma or a lack of support at that time.

• Emotional Trauma: A difficult experience during childhood or adolescence, such as abandonment or intense bullying, can cause emotional development to feel halted at that age.
• Lack of Social Camouflage: If a person stopped "masking" at a certain age because they were too overwhelmed, they may feel stuck in that younger, more vulnerable emotional state.
• Reddit +2

1. Comfort and Predictability

The past is known and predictable, while the future is uncertain and anxiety-inducing.

• Comfort Item: Similar to a child with a blanket, an autistic adult might use a specific period in their life as a mental "comfort item" to navigate high levels of stress or anxiety in the present.
• LinkedIn

Summary Table of Causes Factor Explanation Monotropism Intense, narrow focus that makes switching topics difficult. Inertia Difficulty in starting/stopping a mental activity. Rumination Unproductive, repetitive thinking loops about the past. Trauma Replaying a past event that was overwhelming. Need for Safety Seeking comfort in a known, predictable, or "safe" time.

The thing is, if she doesn’t know what would help when actually living with these feelings, being in her own head, how are you supposed to know?

@Jellybelly80 that looks really useful!

Sorry to hear things are still not great, OP.

Have you read Jeffery Bernstein's book 10 Days to a Less Defiant Child? I found it quite useful.

Yes I suppose so @EwwPeople so I can’t really do much else can I?

Thank you @Jellybelly80 that’s really interesting reading and I can see a lot that relates to my daughter (and to a lesser degree, to me; I’m pretty sure I’m autistic too).

The question is how to help her out of this 🤷‍♀️ Or maybe I can’t. Or maybe it’s time.

I’d agree that all those things will be relevant but can Chat GPT suggest how to overcome those factors and actually move on?

Time to take away that allowance.

Ah I'm sorry to read that things are still so tricky - it does sound like you've made some progress though (but often with parenting it doesn't feel like it!)

OP you seem so very scared of her mental health. What’s actually going on there for you?

Yes I really am scared but maybe I’m catastrophising. Her mental health hasn’t been good for a while (not surprisingly). I joined a FB support group for parents and some of the things I’ve read are awful - kids who self harm, attempted suicide (more than once), in and out of hospital etc. I worry that if I go in too strong, her MH will plummet. But I also recognise that this is quite disordered thinking and dh says we’ve done too much of the ‘what ifs’.

Hi there, I did a Google search on ‘how to help an adult who is autistic with rumination’ and lots of info came up. I chose rumination as it had already been mentioned in the thread but I suspect using any of the terms from my previous post would also mean good search results.

all the best to your girl and your family. 💐

these type of consequences very rarely work in the world of autism.

The world of autism that I am very much part of, needs a reality check occasionally, and this is one of them.

@TrashHeap I’m happy to agree to disagree.

Disagree completely. Your world of autism will be very different to OP’s. I would definitely NOT stop the allowance.

...and absolutely nothing will change.

Well it will. Age and maturing brings about it’s own natural change. I too am in the ‘world of autism’ as you put it, and would get in almost every case, taking away the allowance for will not solve the problem, only make them worse.

@Whattodo1610 how would it make it worse?

Im completely confused now. Would making the allowance dependent on doing some chores at home a good compromise?

Only you know how your dd will react to her allowance being taken away. In most cases it will cause huge uproar as it will be a sudden dramatic change, it will seem unfair (in your dd’s eyes), a punishment (when her brain can’t see she’s done anything wrong) .. plus many more things and reasons.

In my personal experience, age played a big part in my dd understanding things around her, what was acceptable, expected etc. It just took longer than in NT.

I would concentrate on what you want as a family and do what works for you .. don’t think of how others perceive you, what others think, or what you think others are thinking you should do. Parenting an autistic child/young person/adult is difficult. Does your dd claim UC?

No, she will not consider benefits. I don’t want my dd to feel punished but at the same time I want her to understand that money has to be earnt. Is it fair that me, Dh and her 2 older sisters go out to work and do chores around the house and she does nothing?

Of course it’s not fair on you. I’m on your side here, you sound very defensive, no need to be. Does she get PIP? Quite honestly I’d tackle the benefits side first. If she’s not working and not in education then she’s entitled to benefits - not only the money side, but they also give her national insurance contributions for her to be eligible to state pension when she’s older.

Thank you @Whattodo1610 sorry I didn’t mean to come across as defensive, I’m not - just exhausted from trying to work out the best course of action!

Dd point blank refuses to apply for ANY benefits and I can’t get to her budge on this. We are lucky that we can afford to support her but my worry is that by giving her money with no expectations we are enabling her to continue to live like this. I know she’s still very young and there is time for her to mature but I worry that she’ll still be in the same position in 10 years time! Although I also know from past experience (but much smaller things) that she does things when she’s ready and when the pressure is off so 🤷‍♀️

Does she get any PIP at all? Are you her appointee?

She will change as she gets older, even by just a couple of years. Honestly, I feel like we just muddled through every day. Initial thoughts are talking through with her about financial affairs, tell her it’s not fair to her or your whole family, that you support her fully financially. You can’t, and shouldn’t, be doing that. She needs her own income, even if it is from benefits initially.