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!

Another one who says that this sounds very like autism (my son and my dad are both autistic), and that sadly, you probably need to keep pushing to get that referral in place.

It took about 6 years from my first 'I really think this might be autism' to diagnosis with ds: 3 different SENCOs/school referral processes. Yet when we finally got into the system, the professionals said he was an easy and obvious diagnosis (& his traits are - tbh - less obvious and 'typical' than your sons)

If I was you I would

• get the diagnosis criteria in front of you
• list out everything your son does that is relevant to those criteria ( think backward and laterally, keep the doc around so you can add to it as other things occur to you)
• take that doc to school and your GP: with school, I would be asking them what they've seen that you might have missed; with the GP stress the worst issues.

And in the meantime, read a few books/watch youtube videos/find out some more about autism: I (almost) guarantee you'll be going 'ooooohhhh, yeah, he does that. And that. Oh, and as a family we do x as we know he finds that difficult) '

My GP - who was great and really helped us - said it's easy as a parent to miss things that you have just got used to or think of them as 'just his way' - making that list, and being brutally honest about what happens 'at the worst' is so valuable: don't think of it as a failing of him, or of your parenting - think of it as a symptom - like a really bad stomach ache. If you don't tell the doc, s/he can' fix it properly.

Just as a good news story for you - my ds had his hardest years between year 6-8 I'd say, when we didn't have a dx, but the expectations of him (to be 'polite'; conform with his peer group; behave 'normally') were highest. He was unhappy, starting to self harm, struggling with school. He's 16 now, and has an AMAZING, low-stress gang of mates; is expecting a great set of GCSE results, is a happy, affectionate and funny young man, and understands himself and his needs much better than I do: he can spot something getting hard and figure out what he needs to do to calm himself: at least some of the time! And getting a diagnosis was absolutely key in helping him (& me) understand that for him to be happy we had to change how we do things, and making those changes.

The Explosive Child (book) is good. Children like this don't respond to standard parenting techniques. It is EXHAUSTING.

The diagnosis helps a little but I have also experienced a lack of follow up and support and I don't know many other parents with DC like this so it's hard to know what to do a lot of the time.

Use the list arion provided and write next to it, all the evidence that you have, that relates to each point. Video his behaviour surreptitiously too and also mark next to each point that you have video evidence if needed.
I think the common mantra of most parents with sn kids, is how hard they had to fight to be listened to.

Do not want to turn this into a pro-ABA rant but ABA done properly by properly qualified professionals is absolutely what would make all the difference in a case like this.

I also had very little idea of just how different DS1 was until this last year, when DS2 became a toddler - it's astonishing to see how a "normal" toddler is - I had just assumed DS1 was normal, just toddler shenanigans and/or that I was shit.

I feel like I have failed DS1 already and he's only 11 :(

Doesn't ABA just mask symptoms of distress, and not actually help the child gain coping skils?

Hi OP, first port of call is your GP To ask for a referral for an ASD assessment, gather as much information as you can, include everything you’ve written here, think about his history as a baby and toddler, any speech issues or delays? Sensory issues, triggers, any stims? Like flapping, rocking, screeching? Repeating words or sounds over and over? Etc etc
Do some research on ASD and take note of anything that matches your child’s behaviour.
Also request a meeting with the school senco as well again with all the information you have shared with the doctor and any new knowledge you gain from research.
I have two children with autism and your post really does reflect what life it like for us.
Please don’t give up, it’s not fair but we have to fight for our kids especially when it comes to getting an assessment and being listened to, don’t back down, he clearly needs support and provisions put in place and it will make the world of difference and knowing more about why he acts the way he does will help you, there’s also sensory assessments and an OT can help identify things that will help calm your son down, for example my boy loves water and my daughter loves deep pressie so weighted items are perfect for calming her down.
Good luck op and I’m sorry you aren’t being listened to, I’ve had to fight my daughters corner as girls present so differently but it was such a relief when the professionals told me I wasn’t mad or imagining things!

OP, you could have written that about my 11 year old son. All the classic signs of ASD.

Write down everything you can think of that is relevant, including what you have posted here, and email it all to the GP. Say you want to talk about a referral for an ASD assessment and ask whether they will need to see your son in order to organise that; if they do, make an immediate appointment. If the GP is still reluctant, try to see a different one.

@BertieBotts

Doesn't ABA just mask symptoms of distress, and not actually help the child gain coping skils?

No. It gives strategies for dealing with the things that distress the child. Using ABA techniques, my nephew went from having full-blown meltdowns on coming across noisy roadworks to being fascinated with the machinery and actively seeking roadworks out so he could go and have a look at it in action.

Op, you have described my dd as a baby/young child, she’s now 16.

My daughter was diagnosed with Aspergers at the age of 4, she was a awful baby, rarely slept at night, hated people fussing over her unless it was me who had to be with her at all times, as a child she was very argumentative, still is sometimes, appears to have no empathy but now she’s older it’s clear she actually has loads of empathy but doesn’t know hoe to deal with it.

Your son has some quirks, some that maybe causing issues but they can also be turned around and used to his advantage.

OP, if you can afford it, go private. I wouldn't wait any longer to get assessment

Hi
It sounds like autism to me too. DS2 has ASD.
The refusing to eat is a massive part of ASD and a huge stress for parents. I stromgly advise you to tale the battle out of it. Unlike other children. they genuinely will almost starve to death rather than eat. their brains just tell them not to swallow certain textures and they often have incredibly delicate stomachs and feel or are sick or have stomach cramps a lot.
If that happens again, just calmly say: you need a bit of protein, a bit of carb and two of your five a day for dinner. You choose them. DS lived on tinned spaghetti with grated cheese and petit pois for what felt like years. Every single day for packed lunch he had cheese sandwich, peeled apple slices and a bag of crisps. He wouldn't touch anything else. he was skeletal. Teaching him to enjoy food was one of the hardest things I've ever done. Thousands of hours of patience (no kidding.)

The not sleeping is awful. Is he sleeping now? It's so hard to cope if they won't sleep. With the not giving toys back, you just have to spend hours and hours explaining fairness and cause and effect: 'If Joe learns that when you borrow his bike you don't give it back, he won't want to lend it to you ever again and he might might not want to be your friend because friends are kind to each other and keeping his bike when he wanted it isn't kind.'

I used to use a sort of points system and plan in advance. 'At Joe's house we are going to do three things today. We are going to smile and say hello. We are going to give back toys as soon as people ask for them. We are going to smile and say thank you and goodbye.' If you do all three of those things, you can choose (15 mins gaming time or cartoons or a treat of some description.) Just keep on doing that until it clicks that it's for his benefit as well. They don't 'get' social interaction and can't read facial expressions or tones of voice easily. Also, when he has tantrums, afterwards, have a very direct conversation: 'When you have meltdowns, you are so upset. You have very intense feelings and you show them. BUt I have feelings too. My feelings are as important as your feelings. When you scream all the time, I feel so sad and worn down. I'm your mum. And i need energy and happiness to be a good mum. I can;t be a good mum if you scream at me all the time. We need to sort this problem out. I have some ideas and I wonder if you do too?'.

@BertieBotts

Doesn't ABA just mask symptoms of distress, and not actually help the child gain coping skils?

My daughter has been attending ABA for a few years and it has made a massive difference. For me ABA is about praising my daughter for all the good she does and managing the behaviours we can’t change. Why does she act the way she does? What’s the trigger? What can we do to make that better?

Hi Op. We've just gone through similar with our 7 year old. School said he was fine, gp wouldn't refer etc. We ended up contacting early help who took on his case, came to meet him and then liaised with the school on our behalf. All of a sudden the senco referred him and he got a diagnosis 8 months later. Look them up on Google and you should be able to find the one closest to you. Hope that helps

Another one who has had to fight to get a child the help they needed- 10 years to get a diagnosis, another 5 before she had really got all the help she needed (physical and mental health needs). It was an exhausting process. But it has been SO worth it, not just for her (though that was always the most important part) but for all of us.

She is now leading an independent adult life and though she still has quite a few problems, she knows how to work with them. It is also much easier for all of us as a family to understand where she is coming from. I am not wasting mental energy resenting things that I now know has a cause.

Oh my gosh you and son have been so let down. Autism is coming out loud and clear.

You have to fight to get referred. If gp isn’t helpful the school nurse can give you a way into Camhs. That’s what happened with my DS. Can’t remember if she wrote to the doctor of straight to camhs. My DS got knocked back from an autism paediatrician twice so we were referred to camhs. It’s all very stressful and takes time.

He’ll have sensory processing issues. He’ll be overstimulated with some and understimulated in others. Mine loves deep touch, hates loud noise (he wears hoodies all the time) and can only tolerate certain foods.

The noise he makes will be him stimming. It comforts him. Flapping hands and tip toes are common too.

There’s a lot of take in. Glad you posted you’ll get some good support on here.

Your son definitely ticks many boxes for ASD . This poor little guy really does need to be properly assessed. Go back to your GP .💐

I know you didn't say you would, but please be careful with language that could make your feelings your child's responsibility like someone has suggested, it can have lifelong effects on mental health and family dynamics. People on the spectrum do have empathy and can feel a lot of guilt and fear around their feelings and behaviours. "Tantrums" or meltdowns are an expression of overwhelming emotion when a person can't cope, you can avoid triggers and teach someone to cope without using emotional blackmail to guilt or fear them into suppressing their feelings. If a child can't cope with a situation then telling them how awful their reaction makes you feel doesn't help the need or cause of their distress and it adds an extra layer of difficulty for them. It's far better to get emotional support from an appropriate adult for yourself, and then parent through helping a child to manage their specific difficulty and give them strategies. I wouldn't have said anything but mental health outcomes can be heartbreaking for those with ASD due to things like this.

you don't 'phone' cahms but speak to GP to put a proper referral in place. If you ring them, of course they fob you off. Do you ever read the news about the state of affairs?

You are his only advocate. You need to get your backside in gear. Having a child with SN is challenging but you need to be persistent and not allow anyone to fob you off.

Please see the GP and demand a referral to Cahms and also speak to the Senco at school. he is clearly not appropriately supported.

But please don't be resentful of your DS!

@flowerpotsandrain - I do agree with you actually. I phrased that really badly. It's more that I do think it's very important that they understand that parents aren't machines that can take every thing thrown at them. We're not. While it's vital, as you say, that they don't feel responsible for their parents' happiness (my post really was badly worded) I do think they need to learn that how they behave impacts on others and if they behave badly, others will react negatively. We all need to learn this.

If there is any way you can afford a private diagnosis it will speed things up considerably but it isn’t cheap. Hope you and your son get the support you need and deserve very soon.

On the empathy front autistic people tend to feel very deeply but, how I think of it, is that there’s a disconnect when it comes to linking to other people. That last little bit doesn’t come automatically which is why there is a common belief that autistic people lack empathy. They don’t, they’ve just missed that connection that trigger most people’s empathy. Which is why they’re so kind and loving in some circumstances yet seem cold and unaffected in others.

Thanks for the positive ABA stories :) I had only heard awful things about it online but it sounds like it can be used constructively/respectfully as well. It must (like many things) depend who is delivering it.