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.

There is no such thing as good ABA. It's forced masking on steroids.

@VitoCorleoneOfMNMafia

I get that. And, so will she when she is an adult. All the positives of autism I see and talk to her about will make her the most amazing autistic adult.

But, right now, it is destroying her. She wants a friend but girls her age are all at that 'falling out' developmental leap point. She wants to live by herself but she's not old enough to do so. She wants to only pursue her special interests but school gets in the way. She wants to go to Uni now and be a gaming cider but she's too young.

She blames me for her autism because it's most likely my genes. Is that why I am the primary target? Is it just her secure attachment? I don't know.

*coder

She is also too young for cider, mind you!

Thanks for the recommendation @PollyThePixie I will give those a go, the ones I've been giving him were making him feel a bit queasy.

I can remember when I once had a massive massive meltdown. I was screaming, breaking things, telling my parents how much i hated them etc.
After I'd calmed down my mum came and sat with me. Told me very nicely but sternly that my father had actually had a minor heart attack the week previously. That they had kept it from me because she didn't want to worry me. But I seriously needed to think about my behaviour because he didn't need severe stress right now and me screaming at him for daring to want to watch a TV show he liked was not helping.
I think that was the first time I actually thought about how my behaviour could affect others. I was about 14 at the time. I'm not saying I became perfect overnight. I didn't. But almost 30 years later that has stuck with me. And I still use it to try and think of others and how my behaviour affects them.

Please let me know if you ever find one, I'm desperate for a private paediatrician in Scotland as well!

I agree with this.

It will only get worse with puberty.

My dd coped with vaping, weed alcohol its been difficult.
Dr Naomi Fisher is brilliant.

Reading this with interest. I grew up with an autistic brother who would walk around the house stark naked (sensory issues), but would insist on wearing multiple layers of clothing outside in the middle of summer. It was hard having friends over as they understandably felt awkward with him being bollock naked. People would stare at us on holiday due to him wearing a hat and scarf in the middle of the beach.

He insisted on having the TV blaring. I still have PTSD from hearing the Thomas the Tank Engine theme tune, but in all seriousness the volume was too much. He used to attack and terrify my sister when she was baby/toddler because he was jealous of the attention she received from my mum.

As he's grown up, his more NT friends have held him more accountable for stuff than my parents, and you know what? It's helped. I don't agree with infantalising and molly-coddling autistic children.

My son is autistic and has sensory issues. A girl I follow on social media admitted she hasn't given her autistic DD a bath in over a month due to her fear and sensory issues. Her followers would think I'm a terrible person because in the past I have forced my 3-year-old to have a bath. He suddenly developed a fear of bath time so I physically put him in the bath and washed him while he screamed. It was horrible but thankfully he's over his phobia. He now has a fear of going a different route in the car. Unfortunately, we live rural and have to use the car.

This is, with respect, simplistic, ignorant nonsense.

@PaperSheet I was asking the poster who I tagged. I know my behaviour isn't normal. I have an assessment for autism soon. I was actually thinking of removing myself from the GP and having no doctor at all, as I find it so distressing dealing with them. Dealing with any authority really. I also have no friends and am estranged from family I grew up with. Thanks though

OP your situation sounds intolerable and you are understandably depleted. I worked in CAMHS and now in private practice in Scotland so apologies if what I say is not relevant.

I often see families with ASD children who are really struggling but been offered little help from SW. They come to see me (a Clin Psych) not really knowing what it is they need, just desperate for something to change. Often it is respite and practical support that is needed to protect the wellbeing of the child and the rest of the family. This is the remit of SW.

I have phoned SW on more than one occasion and asked what the plan is, given my view and suggested that a child protection referral might help. This can be for any number of reasons, not necessarily parenting. It sounds at the very least, your younger DD is at risk of harm and your older daughter needs input to prevent the family disintegrating. Whatever conclusions SW have reached just now, they are obliged to respond to this and act to mitigate the risk. It's rare the referral is made, but the suggestion tends to bring focus.

Anyone can make a referral but if your GP knows the situation you can speak to them. Please think about this, you sound like a parent at the absolute limit of your tolerance. Disengaging emotionally from her must seem like the only way to survive while you and your family are failed by the agencies that should be supporting you. It's totally shit that you should have to do this, given the challenges you are facing, but make those who should be doing so accountable.

I so hope things get better, no one deserves to feel this way.

The fucking irony of this!!!!!

Have you tried Zero Demand Parenting?
For people with PDA/ASD with traits of PDA, it can work really well but as parents, you both have to be on board and totally on board.

I’m sorry you’re finding it all really difficult at the moment and yes, it’s exhausting parenting any child with additional needs but she needs you more than you’ll ever know.

Even though she hasn’t got a formal PDA diagnosis, pretend she has for now and when you get time, read up about the strategies for zero demand parenting - it made 100% difference to our lives!

I'm sure other posters with more relevant experience will have more helpful contributions than anything I suggest, but I couldn't read and run without giving you a big hug. I actually think you sound like an amazing mother who is battling for both of her children, just in different ways. You sound pretty incredible to me.

Ha ha, oh my goodness I'm not alone. I was Mickey Mouse once for about 4 months, she wouldn't do a thing unless I was Mickey 😀

@stargirl1701 I have no clever advice only empathy. My ASD parent is no 87. It sucks. Stay strong.

In school holidays, I let my two have unlimited screen time. This helps with my sanity, hence I can cope better.
Rules are best kept simple. No hitting, no shouting at mummy (me), tidy up own messes (not perfect, but I must see effort)
Waiting turns
No throwing things in the house
No going in other peoples bedrooms
I've had these simple rules for a long time ad it works

I don’t have any advice but I sympathise tremendously as I’m going through the exact same thing with DD7 who is also diagnosed autistic. I love her so much but I really am at breaking point and I know it’s only going to get worse with age. Counting down the days until she’s back in school and hopefully being in her routine again will make a difference. She is my world, but it’s so bloody hard. Sending my love to you and your family ❤️ x

I haven't read all the posts, so it might have been discussed before.

A couple of years ago, my not-yet-5-year-old son (in reception year) suddenly developed compulsive-obsessive behaviour. It was hell, incredible aggression, no eating, anxiety, and we felt we were done. No professional help, we went private but still no help, only we were told that at such young age there is no such disorder.

So we were left to our own devices.

The only thing that help him was to take him out to nature. First he was carried by his father because he was too weak, he could not walk (as he was too anxious to eat) but over the weeks he started to eat and got stronger and managed to walk by himself.

These walks calmed him down immensely.

This was our solution and it worked. Even to this days, 7 years on, if he is getting upset or anxious a bit, we take him for big walks or biking. Simple as it is, it really is a miracle.

This reminds me of the going to nursery/reception days, 3 years of pretending to be whatever animal he chose every day to get him out the door and to nursery

I used to long for the days I could leave the house as just myself!

This is the same approach we have. And, while it can still be hard at times, this kind of absolute basic expectations with no other pressure at all really seems to help to keep a calmer environment.

I've read some more of your posts OP, and I'm really concerned that some of the things you're suggesting could end up being seriously abusive. I don't know what to suggest, perhaps an autism charity? to get really good guidance on your options for getting some support for all of you.

My child with ASD who was explosive and dysregulating is on propanalol and has been for 4 years. It's a beta blocker commonly used by CAMHS for ASD explosiveness. Pretty much stopped the 'fight' response. There are other medications which were suggested too.

He also started an autism school which has been transformational. Children like ours needs friends who are the same as them, teachers that teach in an ASD way, a sensory friendly environment with social communication and mental health embedded through the school. They don't need to feel like they get everything in life wrong.

Our life has gone back to normal thanks to these 2 things. Medication and the right school.

I really hope you don't work with autistic teens. Thankfully I suspect you're lying.

Could you try and change how you view doctors etc? I'm not a doctor but I work in health/ medical. I certainly don't view myself as an "authority" figure. I'm simply there to help and give advice. If you (general you not you personally) don't want it that's fine. But I never try to tell people what to do. Just explain what they should or could do to help themselves. (It doesn't really bother me if they don't do it.)

What strategies do they use at school? Can you ask for social stories/visual aids?