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.

I applaud you for your honesty OP and I'm glad you've got some advice here that may help.

I don't think anyone can judge until they've walked in your shoes. I hope you can find a way to live better.

Do you really think that if someone finds it hard to cope with a 12 year old rampaging through the house, bitingg and spiting it nods to autisim?

That sounds unreasonable to me.

I could not cope well with that and do not have autisim.

You keep saying she has very few demands. All these activities and mainstream school during term time are HUGE social and sensory demands.

Making appointments in the first place is very challenging - the PDA, but also ADHD and huge phone phobia all conspire inside my head to stop me! I am lucky that so far I haven't had to deal with a lot of medical advice, but I absolutely did not rest and sit down following my c sections x3 and point blank refused to sit in a wheelchair when I had to be taken to radiology for a scan after having one of my dc. I am in my 40's too and am intelligent and capable in many ways, but being told what to do or restricted in any way causes a deep sense of unease.

Nearly all the advice on this thread has been about how to manage the op's dd's behaviour and hardly any of it has been about how to make the dd's life happier (which would also have the effect of making the op's life easier) - it is all about forcing autistic people to behave in a way that doesn't bother NT people and NT people will never consider changing their behaviour

As the mother of an adult son who has 3 other dx alongside his initial one of Classic Kanners autism I’m absolutely appalled by your comments. I live for my sons happiness. Everything we do is to ensure he’s as happy and as comfortable as can possibly be. And then the likes of you come along and make a statement like the one above. I’m guessing you’re on the spectrum and of the opinion that it’s only those on the spectrum who get it right for others. Well I have news for you - you couldn’t be more wrong.

ABA IS abusive.

What support does she have? EHCP? Specialist setting? Speech and language? sensory occupational therapy?

My child used to meltdown constantly. Got them an EHCP, appropriate support and a new setting. Completely different child now and meltdowns are very rare. Meltdowns happen because needs aren't being met.

If you do what you say it will just get worse, it certainly won't make any of your lives easier or happier.

Unfortunately in my experience (autistic ds and other family members) autistic people are inherently selfish and can physically only think about themselves. It's like they completely forget there is a world outside their own head and that others around them don't think exactly as they do. It's often not possible for them to consider others first, regardless of how many times you remind them to try (like constantly!!).

@BearKey I feel the exact same way about many neurotypical people. They have no concept of how other people can't mind-read and so don't communicate clearly, no concept of how being loud and shrieky after a bottle of prosecco stops everyone else in the restaurant from having a conversation, they try to board the bus or the train without letting departing passengers get off first (isn't it obvious that others have to vacate the space in the vehicle before you can enter it?), they "read between the lines" and infer things that I didn't actually say and then are angry with me for something I didn't and wouldn't say, and they fish for compliments by asking me what I think of their clothes after they've bought them and come out in them.

That last thing, the "what do you think of my dress?" question, is the most annoying. I'm not a supporting actor in your life to utter your choice of lines, whether I believe them or not, on cue. But that's part of the cultural difference between neurotypical people and autistic people, isn't it? NTs think it's OK to ask for a compliment to make yourself feel better about your appearance and believe that a true friend would lie sooner than tell you that you look anything short of stunning, whereas I think you would rude in pressuring me into a coerced statement for the sake of your ego and treating me like a emotional support dog in the process, and I think that a true friend never asks others to lie about their opinions.

With this level of culture clash, no wonder autistic children have problems existing in the world.

@MobMoll you are right re meds. I'm not in CAMHS now but SSRi's were used occasionally to see if dysregulation reduced. Also stimulants to trial the effect on attention which sometimes improved social functioning.

why do you think this?
i am not sure this is the sort of assertion/insult you can just toss out without some kind of argument to back it up …

@PaperSheet tbh the way I view doctors is just one of many issues I have. With people in general. I don't have anyone to talk to about this stuff. This thread isn't about me though anyway.

I have only read the first 2 pages of your posts only, i haven't read any other replies by other posters. Honestly? I had to stop reading as i started crying for you and I just want to give you a virtual hug 🫂 I have 2 with ASD and it's fucking HARD. I am grateful I don't face the difficulties you do with your eldest as my two are 'manageable' with the strategies I've put in place. I'm a single parent with zero support and there are times (thankfully very few) when I too feel like running away/giving up so I really feel for you and your family living like this daily. Ignore any bullshit you get on here, NOBODY not even me knows what it's like to live your life. I pray what you're going to now try has a positive impact and NOTHING you've said (as previously admitted I've not read it all) sounds cruel or abusive and you don't sound like a cruel or abusive parent, you sound like a parent who has been pushed far past their limit. Keep pushing the social worker for respite and keep strong with the boundaries you are putting in place, hopefully once your child understands you are done they will start to improve and you can introduce rewards for positive behaviour leading to a happier more balanced life for you all. Possibly write out the new boundaries so you yourself have a visual reminder as well as your DD for when you get the inevitable pushbacks. God bless you my darling I'll be thinking of you and sending love and support xx

My mother was like this with me as I grew up. I couldn’t verbalise why I behaved the way I did but it was not something I could control.
I’m no contact with her now and have had years of therapy for the ‘authoritarian’ (abusive) parenting she put me through. Make of that what you will though, from your updates it doesn’t sound like you’ll care.

I now have a very high needs, explosive, autistic child myself who has been in and out of education, has had to transfer schools, has behaved exactly this way at home too. Yes, I have myself, my husband and four other children to think of as well and their happiness means a lot to me. But I will not give up on my boy’s happiness either. If a child is behaving this way they are not coping or happy. Coming down on them like a tonne of bricks will only make things worse and will fracture the family.

Unfortunately in my experience (autistic ds and other family members) autistic people are inherently selfish and can physically only think about themselves. It's like they completely forget there is a world outside their own head and that others around them don't think exactly as they do. It's often not possible for them to consider others first, regardless of how many times you remind them to try (like constantly!!)

the term Autism comes from the Greek word Autos - self.

I constantly remind myself of this and it’s invaluable when it comes to thinking something through.

What (computer) languages does she learn? My career has hoped about a bit but I know a little Python.

Fair enough we'll stop derailing it. Final word on it though, if you came to see me and explained your issues I'd happily try and find a way to help you. So I wish you luck in the future and find someone who can help in the way you need.

I have a question as a complete lay person - if ABA is abusive, why is it recommended by autism charities?

@nosykids ah thanks for replying. I don't have a problem with phones, but put off making appointments. I put off everything! Really bad health anxiety. I only went to the dentist for first time last year too and was petrified. I just like to pretend nothing is wrong and not think about it. Oh and I had a blood clot when I was in my 20s because of the pill and I remember I refused to take blood thinning medication. I won't take any advice and have to do things my own way.

The thing that strikes me, is the lack of support. I had to take the LA to tribunal to get my daughter the education she deserved.
Its a fight, everything is a fight. Which is so hard when your energy levels are depleted and you are barely functioning.

It shouldn't be this way. Every child should be able to access the education they need and deserve.
I am now lucky and seeing how the right environment has taken a lonely child with low self esteem to a confident child, with friends. We all just want our children to first and foremost be happy.
It is a failing in this country.

Wow. Where did I say 'ignore all of Polly the Pixie's advice because she's NT and doesn't care about her son's happiness'? And what do you mean by 'the likes of me'?

I promise you the authoritarian approach won’t work.

it damaged me immensely. And fractured my relationships with my family.

I hope you can get better support in place soon. I’m sorry things are so difficult.

i suggest you go away and do some reading on PDA in adults with ADHD.

kindly keep your uneducated, ableist opinion to yourself.

@miserableoldmoanbag

So I prevent her from following her special interests? I have only ever followed her requests for activities. Nothing has ever come from me.

The things she chooses seem very solitary to me. She doesn't have to interact socially with anyone.

@stargirl1701 I'm so sorry you've reached this point. I have several DC with varying degrees of ASD and I'm thinking particularly of DC#3 here.

Allowing (requiring) DC to retire to their room, as their safe space, when they are overwhelmed or reaching tipping point, has been hugely important for us. Particularly if DC has been out in public for any length of time; even other family members can be too peopley for them after they've walked to the library and back, for example.

Allowing meals to be taken alone / at odd times - misphonia is a huge issue for this DC, as are smells of other people's food. They do not feel rejected, they prefer to eat alone.

If you are thinking of Kings Interhigh, I would just say they saved us. DC did years 10 and 11 there, and got 10 excellent GCSEs out of it, having previously been down to 30% attendance at mainstream school due to constant meltdowns / school avoidance. Being able to study in their own safe space made a massive difference. A sibling is starting there in September.

I recognise the feeling of not being able to do it anymore. We have not had violence, but the screaming and flailing has been hard. Other siblings have and are struggling. You are not alone.

This is a well written article if you are interested in learning more @fancreek

ABA

Which autism charity are you referring to?