To dislike my son!!

[Bobblepop]

My son is ten years old and ever since he was born he's been 'difficult'. He was my first born and after having other children I can see his behaviour is not 'normal'.

He used to sleep all day and be awake all night as a baby. Was fussy, had to be held and on the move all the time. The health visitor advised letting him 'cry it out' so he would learn to sleep.
Well two hours later and no success just a screaming baby and neighbours complaining.
As a toddler had night terrors and woke up to 12 times a night screaming! Asked health visitor for advice and the only advice I got was 'oh that's strange'.

Couldn't never eat out anywhere because once he had eaten, it was full blown screams until we left because of people staring.

Never stopped talking about buses, by age 3 knew all the bus routes and numbers and had to scream it out loud every time he saw a bus LOOK 11 BUS 11 BUS 11 BUS over and over over.
Obsessed with lining up toys and spinning wheels.

Got called into nursery every week because he'd been banging his head off the floor or biting people.

I tried to ask for help saying I think he has something but everyone told me no no just his age. Didn't seem a cause for concern that he screamed his head off after waking from every nap.

Tantrums that lasted HOURS, and very frustrated with EVERYTHING.

At school had a special corner to 'go and calm down' in. Still the teachers said there's nothing the matter with him. By this point I'm the only one thinking he has ADHD or something.

But hey who am I? I'm only his mother so I don't know anything.

He's trashed classrooms, has meltdowns, punishment doesn't work. I've been to parenting classes to see what I can do.

We talk but he appears to have no empathy. Even yesterday we were at a friend's and he was on their child's bike, the said child age 4 wanted their bike back and son refused because...

"They can't ride it anyway so what's the point in them having it"

He's self righteous, and quickly goes into meltdown mode if he doesn't get his own way.

I've phoned social services myself asking for help. He's got knives from drawer's and is aggressive.

I do love him but I feel as though I'm in some sort of weird abusive relationship where I can't get out of it.

I'm worried for his future because he's so sporadic I've even thought he'd be the type to probably commit suicide on a whim because he was annoyed.

I don't know what to do! I've phoned CAMHS, I've phoned doctors. Nobody is interested.

I'm fed up!

Both of my sons were autistic long before they had either solids or vaccines.

@makeitstop24 your name is very fitting - so please make it stop 🙄🤦🏼‍♀️

Also pretty sure OP would prefer that her son has autism than have him die of meningitis 🤷🏼‍♀️

I work with children I'd say definitely on the autistic spectrum. You will have to just keep pushing for him until someone hears you.
Sorry you are not getting help now. X

Op please pursue a diagnosis as this will trigger assistance which your son may need throughout his education. Your life will be easier with a diagnosis.

@theDudesmummy

ABA saved all of our lives, I believe. We ran a fulltime programme (at home and school, 40 hours a week) for seven years. DS started off as a severe self-harmer, with no means of communicating and hundreds of tantrums a day. Stimming constantly on all doors, gates etc, so could not even walk down the road or go into a shop. He could go nowhere and do nothing, and neither could we. He now does not have any form of self-harm, no real stims, can communicate excellently, and enjoys many activities, sports, cultural, travel etc. Please do educate yourself about ABA.

This is what I dislike about ABA

Stimming is self soothing op, a lot of places think it's a bad thing (and I guess it is if it takes over their life) but autistic children should be allowed to stim, it's how they self sooth.

Sounds like he has asd absolutely. My son is asd.

@Bobblepop I was you 16 years ago - hang in there - either get this thread moved to the special needs Board or post there for help - there are some very experienced posters who helped me more than words can possible say .... don’t try to do this yourself - you need professional and emotional help and a lot of it ... once you understand how his brain works, then you can empathize, and that was how I managed to love my son for who is is (and not mourn the son I expected)

As soon as I read your post I thought autism.

I’m the mum of autistic twins, aged 10. My son goes to special school and was diagnosed aged 4. He also has dyspraxia. His twin sister attends mainstream, she was diagnosed last month.

I started to RTFT and it was too triggering so apologies.

Re ABA - it’s worth talking to adult autistics rather than parents. I learnt a lot about my children from educating myself and listening to adult autistics describe how they experienced the world. The autistic brain is not wired the same, and we have to be really careful not to project our own feelings and thoughts onto what our children might be experiencing. All I will say is I don’t know a single autistic adult who supports ABA. It’s widely considered as abusive, even the subtler modern forms of it. Essentially you are training your child just to copy behaviours your want, just like a dog, without ever getting to the bottom of their actual needs. I think if the autistic community is saying en masse that ABA is bad it’s incredibly arrogant to override that voice and think we know better.

Re getting a diagnosis- it’s hard. You can’t just rock up and say “my son has no empathy and is horrible”. You need evidence, documented and you need to be able to prove your case. Video evidence. Diary entries. Specific examples. Also very important - what interventions have you tried? If you’ve just thrown your hands in the air and said “nothing works” but you’ve not tried specific and targeted interventions they won’t pay as much attention.

You shouldn’t need to do all this, but this is the reality of getting a diagnosis. Makes my blood boil to listen to the wild accusations in the media of “it’s easy to get diagnosed as autistic these days” because it bloody well isn’t. You are his parent and he needs you to take a breath, step up and fight his corner in the best possible way. Now you know it could be autism, educate yourself, become the expert and be prepared to stand your ground and fight with the evidence you collect. It shouldn’t be this way but it is.

Re his behaviour, you need to look beyond what’s happening and figure out the underlying need. Autistic kids are very honest and very literal. It doesn’t mean they don’t care and it doesn’t mean they’re horrible. Have firm boundaries but don’t get sucked into a battle of wills. Decide what’s important. Learn to read the behaviours - it sounds like he’s crying out for help. Sensory issues too.

I know it’s hard, believe me I know. But your son really does need you so much. You are his protector and it’s up to you to get them to listen because he clearly needs support. Sending you lots of love and best of luck.

My inbox is always open if anyone ever wants to chat about this.

Flamingo, what you say about ABA (in the modern day) is absolutely untrue. Of course you are getting your child to use functional and appropriate behaviours and trying to get rid of harmful behaviours, but that is the same for all parenting. ABA is just a system for doing this. My son's needs have never been neglected and he has never been abused. We have eliminated self-harm and obsessional behaviours which were endangering his health and preventing him from accessing anything in society. We have enabled him to communicate, read, self-care, socialise, develop relationships, take part in activities etc etc. And yes, modelling of behaviour ("copying" as you call it) is important. As it is for all children.

Many of the autistic adults who are anti-ABA are high functioning, high IQ people who never had the kinds of problems my son had (totally non-verbal, severe self-harm hundreds of times a day, severe obsessional behaviour).

There is a really divisive ‘adult autistic’ voice out there that is very dictorial and isn’t based on evidence, unfortunately. And pits itself against parents and puts them down.

There are many very worrying ‘treatments’ for autism out there, like chelation and herbs and god knows what - that the autistic voice could be debunking. There could be voices sticking up for families where they are drowning and not coping as the child’s Behaviour / needs are so extreme and they are not being assisted or helped. I don’t hear adult autistics even raising that as an issue but have seen parents who voice their desperation being put down for even suggesting they are not having a positive experience.

No idea why it is all focused on ABA which is one of the few evidence based therapies out there. And I for one do think that some forms of repetitive ABA used for too long or in a less than respectfully and minding the mental health of the child - are not good - however most report that ABA have helped the child learn speech, learn living skills and reduced distressing self harm. In a way that no other therapy has.

Like most things in the online English-speaking world, it seems to be highly skewed towards common US practices. I don't know that it is necessarily transferable to treatments/therapies/etc that happen in the UK where the culture is very different.

I do think it's important to listen to adult autistic voices, but I agree about the dictatorial nature and the vehemence against parents who are struggling. Parents are going to struggle because raising any child is hard - raising a neurodiverse child harder still. It doesn't necessarily mean they are finding it hard because they are rejecting the child's autism or "want them to be normal".

The trouble is there are two sides butting heads with very little effective communication going on.

On one hand you have parents who insist they know best because it's their child. On the other hand, you have autistic adults who can explain what the child is experiencing, and what it's like to be on the receiving end of the treatment. Many autistics consider ABA to be abuse. Parents who have seen ABA produce "transformative" effects in their child find this really offensive.

The problem I have is that the very people who have been subjected to this therapy are the ones who are almost universally telling us that it's not OK. And neurotypical parents are effectively saying to them all "sssshhhh......I know better than you...." If the black community were telling us something wasn't OK, or the gay community, or women, it would be considered as extremely offensive to consider that you know better and to talk over them. Yet that's exactly what's happening here.

If the ABA your child is having really, truly and honestly is addressing their underlying needs rather than just forcing them to imitate desired behaviour without considering what the trigger is, then it's not ABA that you're having. There are a very, very small number of therapies which are labelled ABA but don't ascribe to any of the principles so really are being mislabelled. There aren't many though. Most parents just see the improvement in behaviour and don't appreciate the damage that's occurring. Again, talk to adult autistics, even those who have gone through "modern ABA" and they will explain.

I do understand there are good intentions from parents, but ABA is fundamentally damaging. It's promoted by Autism Speaks - which tells you everything you need to know.

This is a good link which explains more about the problems with ABA here if you're really interested in hearing more about what the issues are. neuroclastic.com/2019/03/28/invisible-abuse-aba-and-the-things-only-autistic-people-can-see/.

I hit YABU because this really really sounds like an SEN and so not fair to dislike your child, although I can totally see this must be super shitty, you YANBU from that point of view! I can’t understand why the professionals are being dismissive. You could try looking up Demand Avoidance Syndrome which is a type of ASD, and see if that rings any bells. What is the school like that he is at? If it’s a very large academy chain of the so-called no-nonsense type, you may need to push really hard. Definitely keep trying for CAMHS. Try to find support groups for ASD to see if you get support/tips from there even if you can’t get a diagnosis.