To be done with autism

[stargirl1701]

I'm done with it.

DD1 is autistic. She is nearly 11, diagnosed at 5. We have made numerous adjustments at home. School have made numerous adjustments. All to no avail.

She swore and kicked her little sister yesterday. Immediate consequence no screens for 24 hours and sent to her room. Of course, meltdown. 2 HOURS later after punching and kicking me she complies.

I'm done.

The needs of the many are now coming first. I'm on my sixth anti-depressant, DD2 is terrified in her own home, DH spends his life walking the dog trying to remain calm in the face is extreme provocation.

I'm done. No more. The 3 of us are coming first for the first time in more than a decade. I'm done.

No more empathy. No more trying to understand. Done.

No matter what we do, she has violent meltdowns. She thinks of no-one but herself. Modelling doesn't work. Talking incidents through doesn't work. She won't use any strategy she has been taught to avoid a meltdown.

I'm done. Time to live our lives.

Fair enough @stargirl1701. I am glad you got some useful suggestions. I really hope you get help. Where I stand- with no experience of autism but we did have MH problems for a while- you seem an incredibly determined, brave and committed mum.

OP - kindly - if you cant accept any suggestions because you've done them all, you judge peoples responses because theyve not been in your shoes and laugh at them...what do you want to achieve from the thread? What is the outcome of this?

I feel for you, all of us do, and I say that with kindness.

It most definitely can get worse. My niece bought her mum to breaking point at this age and new rules were introduced. She had 3 other DC who she was adamant would be put first from now on. Long story short, my niece endured the new routines and lack of “privileges” (no screen time, left in bedroom after school, not eating with family etc) until she simply couldn’t cope anymore and attempted suicide. This was then followed by being sectioned and taken away and placed on high dose medication that changed her, but not in a good way.
Simple fact was, my sister was clueless that she cannot expect her autistic child to behave and react in the same way as her NT kids. Those rules just don’t apply. That’s why they have a special need and a diagnosis of autism. Like it or not, adjustments have to be made and patience and tolerance levels have to be adjusted too. You can’t just simply say one day enough is enough and expect your autistic child to be “normal”

Have you been through the children's hearings system? That way social services have a duty to provide the support ordered and will be held accountable.

It sounds as though you are having your own meltdown here. Understandable to feel at the end of your tether but she is just a child and needs cared for.

Does she have her own screen? An iPad (well protected, with damage insurance!) and headphones might help her.

Are there any summer club activities you can sign her up for? As many as possible will give you a break. Theatre, sports, swimming, country ranger, etc. Most areas have some with subsidised places too.

@Kimchikitchen

I promise I am not. I endure. Always. I endured a violent sibling alongside an alcoholic parent for 18 years. I was born into a crucible of endurance. I just want better for DD2.

Absolutely. On both counts.
OP, it's clear you love both your daughters and are overwhelmed by the situation.
It also feels like some solutions are coming from this thread which is great.

There's this idea called the glass child in families where one child requires a LOT more input and attention than others. In your family OP your DD who isn't autistic has become the glass child because everyone looks through her to see her sister and ignores her needs. Not deliberately, mind you, but it doesn't negate the impact on your glass child.

You parent the kid you have. Some kids do really well with an authoritarian approach. Others a more gentle approach. Some feel more in control with choices. Others feel overwhelmed with choices.

OP, I hear you, you're in a position likely none of us have been in, at the end of your rope, and the very fact you've nearly killed yourself trying for years to do right for your children speaks to what kind of parent you are. No wonder you're done. You might find she responds better to a more structured environment in that sense, or from learning that her actions affect others or that there are consequences. As others have mentioned, one day she won't be at home anymore and this stuff won't fly, there's a misconception that if a child is autistic there's nothing you can really do about destructive behaviours, oh well, they are the way they are: that's ableist as it presumes that autism bars a child from learning and growing.

@DoughnutDreams

Lots happening for her in the Summer. She was at surf camp last week in Dunbar, Fencing Camp this week, Outdoor Ed days, a theatre trip, Summer Reading Challenge at the library...

i'm not surprised, PDA behaviours are as much a spectrum as ASD and can affect people in different ways, mine is quite mild and related to Explicit orders and my own internal executive dysfunction because of my ADHD.

It's partly why it doesn't have its own diagnosis, its a very mercurial condition that is so intrinsically tied to ASD and ADHD they're not sure if its requires a stand alone diagnosis.

I really can empathise. We have two neurodiverse sons and it has been a really hard road. We developed a sort of split parenting style where one person worked with one son, and the other worked with his brother. It sort of worked.

We also had a very low arousal household and, although it may be controversial, demands such as homework were removed. Homework was done at school.

If the meltdowns and violent behaviour have increased, it may be worth considering what is happening. Has puberty hit? Is there a transition from primary to secondary school? and so on. Is there a MH issue (there was and still is with both sons).

One thing that I will say is that although our sons are both neurodiverse, they are very different. Our eldest, who is more 'severely' affected (for want of a better phrase), had more extreme meltdowns, but was much more easily redirected and calmed. Our youngest, who is demand avoidant, but much less 'obviously' affected, was much better at pushing buttons, verbal onslaughts and shocking behaviour.

@Froodwithatowel it still boils down to a lot of walking on eggshells and the NT people in the house always having to put the ND needs first for everyone's safety regardless of feelings.

Believe me when I say that autistics feel the same way about living with neurotypical people. Being smacked by my parents or hit by my sister and not even understanding what it was that I was supposed to have done wrong. Living on my own was the best decision I ever made.

@eggsbenedict23 Smacking is abuse and just results in the child fearing and resenting the parents and, more critically, no longer trusting the parents. I didn't tell my parents that I was sexually assaulted because, at the age of eight, I had stopped trusting them because I expected them to take the other person's side and hit me.

@WildUnchartedWaters

In your quote, I literally said I gained 4 new avenues to pursue...

@EilonwyWithRedGoldHair there's a reason sleep deprivation is a form of torture. 🙈🙈🙈

my son never slept either apart from a couple hours every night. It was horrendous. Is your sons problem that he can’t fall asleep or won’t? A few things I used to get some success with - epsom salts baths, a weighted blanket, rubbing lavender oil into the soles of his feet then putting his socks back on. You need to use more than you think though as not all of the oil will be absorbed. You can mix it with a cream if you like. Have you tried any sensory stuff with your boy. A session before bed can help. Would he like an electric blanket as sometimes being warm in bed helps. Or perhaps a much colder bedroom would help? Coukd you ask for a referral to a pediatrician to see if he can have melatonin? Something else to consider. Can you get your son to wear a smart watch at night and use a sleep app to see just how long he does sleep and what stages of sleep he goes through.

if I can be of anymore help please just say.

@Quitelikeit

She's pursues us to keep hitting and kicking. It clearly is her strategy to get out her own uncomfortable feelings.

No more.

I require her to start using the many, many strategies she has been taught.

@Kimchikitchen moving is immensely stressful. Even more so with an autistic child.
I have moved 5+ times out of necessity and the disruption causes lots of issues in itself. «Just» building an extension so that child can have own unit when over 18 caused havoc.

You often cannot apply for schools until you have actually got an adress in that area.

Cost of housing and job possibilities.

And no reason to fight the school system when a change is due within 18 months anyway. That is energy wasted.

@PhantomUnicorn Can I ask, how were you diagnosed? This sounds like me, I get terrible anger and rage when people try and help and give advice. It's making it hard for me to access support because I know how I will react. Thanks

@ontetwo3

No homework. That was one of the first of 3 battles we had with school on day 1!

We do not consent to homework.

We do not consent to positive behaviour management charts.

We do not consent to withdrawal of playtime as a punishment.

That formed the basis of my first letter on day 1 of Primary 1. Before diagnosis.

It sounds like your at absolute breaking point. I really hope that the disability social worker comes back with some respite.
Are you in any support groups for parent carers? Or more informally friends with similar DC?
Might help you feel less alone.
Could you and DH take it in turns to have a longer break? Half an hour tag team during meltdowns seems fair, but at quieter times maybe longer periods so you actually get time for your body to recover?
Have you spoken to the consultant about the night time meds not working?

painted our dog

I now imagine a labrador covered in children's acrylic paint.

I wonder if DD1 finds it easier not having to deal with the rest of the family? If she's in her room, she hasn't got to deal with people as well as being in her sensorily-appropriate space. If DD2 "pushes her buttons" (my sister was an expert at this), that can't happen if DD1 is in her room.

We did The Incredible Years parenting course when she was 4. Largely useless bar Chapter 9 but being in a group of parents who openly admit they are struggling was very helpful.

Unfortunately, the local autism charity only run a similar group during the day when I am at work.

Both my kids eat in their rooms in front pf their screens. They love it! What's so bad about it?!

Unfortunately this is the time that puberty hormones kick in and things get harder again, and they are more like toddlers than they were in between the toddler years and now.

I get where you’re coming from OP. If you’re tried everything and everyone is still miserable, what else can you do? I also suspect that this situation is way more common than anyone suspects.

FWIW, my aunt had to remove all games from my cousin with ASD in the 90s, as she found them too triggering for him. She used set times as a reward, which seemed to work well for him. He’s now successfully working in ICT so it seemed to work for him, though I guess it was a lot easier to do back then, and was the approach suggested by his 1:1, not something she came up with herself.

I really hope life gets easier for you OP. I’ve taught lots of children with ASD and their siblings, and often life just seems miserable for all.

*Have you been through the children's hearings system? That way social services have a duty to provide the support ordered and will be held accountable.

There needs to be clear legal grounds for a Hearing, on welfare or offending grounds, and there would need to be considerable evidence that the only way to secure the child’s safety was a compulsory supervision order. The Hearing system isn’t the right place for this.

She’s venting. And I suspect if you she makes any changes she won’t approach them with anger.