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!

Getting a diagnosis is important for accessing help at school but why don't you look up suggestions on techniques for managing asd or adhd and see if they work. Join a few fb groups for support and try to follow suggestions consistently for a few weeks.

My son has ASD and ADHD and I recognise a lot of those traits. If you look on google autism traits and ADHD traits, there are some sites that might offer some more insight, although obviously these aren't exhaustive. My son was already under the umbrella pathway for asd. but when I saw the ADHD symptoms, it was like a lightbulb and I basically took the list, wrote down next to each line in what way he fits that criteria, got school to do the same and got a referral through the GP.

ASD assessment is more long winded, it took us 2 years from the outset to get a diagnosis, so it's worth starting sooner rather than later. But we were fobbed off twice when the GP referred us to the community pediatricians through 'lack of evidence' despite reams of paperwork, so in the end the school got the ball rolling directly with the autism team, so we effectively bypassed referral through the GP.

It's definitely worth exploring, even if the answer is negative, at least you can rule that out.

Here are some links if helpful: www.nhs.uk/conditions/attention-deficit-hyperactivity-disorder-adhd/symptoms/

www.nhs.uk/conditions/autism/signs/children/

Thanks for the replies I feel teary reading them feeling like an awful parent.

Of course I like him, but the behaviour is so tiring.
I phoned CAMHS myself directly and they asked if I had a referral but I didn't, but I said I wanted to talk to someone. So someone phoned back and gave advice about making mood cards and other advice, and said I should phone the GP for a referral.

I phoned the GP and they said it sounded more like frustration than a problem. I haven't actually taken him to the GP because I don't want to give him a complex, or him to think people think there's something wrong with him.

Especially now he's ten and so aware.
I feel sad that perhaps I've not done enough but I kept getting fobbed off.

He's not very affectionate and doesn't like hugs so I find it hard to bond with him. I hug him but it doesn't feel like a proper hug if this makes sense.

He's so clever and capable. Thanks for the replies.

Keep pushing OP. This sounds like my DS. He is 14 now and people are finally starting to listen to me. I also have other children so have an idea what is ‘normal’.

I really feel for you OP as it sounds like you are not getting the support or advice you need. I don't know what part of the UK you are in or even if you are here and systems for support and referrals for children with additional needs varies. It sounds like your son should be on the graduated pathway at school and should therefore have a My Plan, My Plan + for example? If this was the case you would be having regular meetings with the Senco at school to discuss his needs and the support that is being put in place. As far as referral processes for any kind of diagnosis is concerned, these vary. Where I am, you would need to go to the GP and ask for a paediatrician referral but you would need paperwork from the SENCO to back this up. As others have said, in other areas this is done through CAMHS. There is usually lots of additional information on your particular Local Authority website about local procedures for supporting pupils with SEND and local support services so this may also be helpful. I wish you luck but would recommend the school senco as a starting point.
I agree with others that many of these behaviours may be anxiety driven and therefore support with setting up consistent routines may be helpful. There is lots of information out there to support with this and again the school should be able to help you.
I wish you all the best.

Hi! I work in SEN and would definitely advise you to push for an ASD assessment and a sensory assessment. It’s not too late to get your son the help he needs :)
Go to the school and go to the GP and be prepared to jump up and down to get him the help he needs. Get written reports and records from everyone that works with him.

Just want to echo the ‘keep pushing’ message.
You still have time OP and his life isn’t already decided.
I hear what you say about taking him to the GP and his feelings, but it’s possible he may feel relieved that there is a medical condition as opposed to being told ‘it’s just the way he is’.
I’d write down everything you can remember from the very beginning. Maybe highlight the most extreme parts and ask for a double appointment so you don’t feel under a huge time pressure.
I would start off by saying - I’ve given this time. I’ve already tried x y and z and I now need action/help/referrals.
Good luck.

Just seen your update. Your GP has dismissed you and not listened, how frustrating, I really feel for you OP. Call back and ask to speak to another Dr and ask the school SENCo for support. Your son has behaviours that are difficult to manage, that doesn’t make you a bad mother for acknowledging this. As someone that works in an ASD service he sounds so typical of the young people I work with. Keep pushing for the support that you both deserve!!

Take him to your GP and do it as soon as possible.

Two of my 5DC are autistic and I'd worked with children that are asd in the past you can not parent them the way you would a NT child(neurotypical child)because it just doesn't work your son will feel fustrated and most probably scared sometimes by his own behaviour believe me when I say he isn't do the things he's doing to be naughty or to stress you out.

Getting him and yourself some proper help will not give him a complex it will help him,it can be bloody hard getting help I know,I knew from the age of 18months that my DS was autistic but it took till he was 8 to get a diagnosis(and I was someone that had worked in early years and with children that are asd)getting him the diagnosis was the best thing I ever did for my DS.

In some areas you can take parenting classes that are just for parents of DC that are autistic and they can be an amazing font of knowledge and you can also talk to other parents who know just what your going through and they can help you build up some lifelong friends and support.

This sounds a lot like ASD to me. My daughter has ASD and we are lucky that we are receiving necessary support both in and out of school and it really does make a difference - you need to write a list of everything and take it to your GP, they should kick start the process of getting an assessment which leads to a diagnosis - whether it is ASD or not. It really does make a difference. Sometimes it does feel like an uphill battle but it is worth it in the end!! Good luck!

You dont dislike him. You just dont like the situation you and him are both in. Fight for him to get the support he needs, I really do wish you t he very best. Must be so hard. And put knives and anything dangerous away where he will never find it. Bond and talk with him . Ask him what he likes and what he wants to do and emerge with him through that as long as it's not a computer and phone game, something more active or crafty. I wish you all the best and hope you get this resolved in the best interests for you and your child. All my love

Also, many of the young people I work with breathed huge sighs of relief when they finally were able to understand they ‘why’ behind behaviours they had noticed in themselves that were different to others. I’d really recommend a book called ‘The out of sync child’ which is a parent friendly intro to sensory processing difficulties (likely to explain why he dislikes hugs etc) and is full of strategies that may be beneficial for home. Private Occupational Therapists will also be able to offer assessment and give you some answers and support, as well as paperwork to get him support at school etc. A one off OT assessment (you aren’t obliged to then do sessions) may provide your family some much needed help and advice. I’d advise looking for some with experience with ASD and sensory difficulties. Some parents go this route and then return to the GP, but I understand it’s not always an affordable option. A google search will bring up private paediatric OT’s in the area and it’s free to call to ask them questions :)

You have to go to your GP - sit in his office - tell them everything that you’ve said here - say honestly that you are finding it very difficult to cope - and that you want a referral to mental health services - URGENTLY. (If you scream urgent it might mean months waiting, not years - I had to wait TWO YEARS - so you absolutely do need to scream for help yourself).

I’d even phone social services - don’t worry they are not going to take your son away - and also tell them and ask for their support, and tell them this is bigger than ‘going on a parenting course’ problem - but you never know, a parenting course may be worth a try too - take everything offered just in case.

You don’t need him to be there at the GPs office - you can just go yourself.

It’s not over yet. And now is a critical time - before teenage years. You’ve acknowledged that there is a problem. As others have said, go privately and ask for an ADOS test (for autism) and screening for sensory from an Occupational Therapist. You don’t have to go through your GP - it’s worth every penny to do both of these. Google ADOS test online near you.

And in the meantime - CHANGE YOURSELF. Sorry to shout. This is the biggest key in helping your child’s behaviour. Lower your expectations of what he can do. Stop any thinking ‘he shouldn’t do this, he shouldn’t react like this, he should be more polite.... ‘ etc. and CHANGE HIS ENVIRONMENT. I’m saying this as your life could be totally transformed if you do this. You probably think you do, but you are doing in reactively and bad habits have set in. But it’s not too late to make it better. Trust me, I have two extremely challenging severe SN children and we coexist very happily on the whole - BUT I have to change the way I respond to them all the time - which is an absolute pain but not a much of a pain as them kicking off big time. You can’t ‘make’ them stop kicking off. You can help their brains cope by reducing what you think they can cope with. Kicking off is communication - it is saying ‘I cannot cope with this’. Find out what THIS is. Keep a diary for a week of every time difficulties arise - what are the triggers for your son?

I'm sorry you've not had any support OP. Go back to school/GP, say you know there is something there and you're not taking no for an answer.
If you can afford to go private then do.
And can anyone recommend any support groups for parents?
Keep pushing, be more forceful, shout louder. Its crap that you have to be like that but unfortunately that's what's required sometimes.

I would agree with others. I have a17 year old DD whose behaviour has always been difficult. Extreme anger from young child. Had advice on anger management. She found the paperwork and ripped it all up in a rage. Did nothing until secondary and then she refused to be assessed and did not want a label. She is now massively struggling with A levels during lockdown as cannot self manage her study and sudden is asking for assessment and help aged 17. It is a bit late now to assist with schooling as she will be past A levels by the time she is diagnosed. She did also briefly see CAHMS following an overdose which they felt was very spontaneous and that she was not depressed which you would think might have promoted some sort of assessment but they just discharged her after one conversation. I do feel your pain OP, it is hard to live with but it will also be hard for him.

I echo the keep pushing approach, I knew that my son was different in the months after he was born, but nobody listened, a GP even suggested I was too nice a parent and needed to toughen up my approach in dealing with him. We finally got an assessment when he was 11 and he got a diagnosis.
Even the struggle continued, no support at secondary school leading to a breakdown, fighting school, the dreaded CAMHS, it just seems endless and I truly understand your exhaustion and frustration.
Just bear in mind a private diagnosis (if you then cannot continue to pay for help) can shut a lot of doors NHS wise, they will dispute its validity etc. Our son's diagnosis was NHS funded via a private psychologist and one who used to work for the local CAMHS (all arranged by the complex needs team) but we still have to fight to get the diagnosis recognised every time we see someone new. A team member at CAMHS even went so far as to say 'I used to work with ......, never rated him'.

The smelling thing!! So typical of my son. When he was younger he used to sniff people, or seats or put his nose on things and sniff. I found it embarrassing in public.

He doesn't so much sniff things now but does ask what smells? What's that smell etc.

Also he makes random sounds but not like tourettes, it's words like YEEP YEEP, he will repeat them for weeks randomly, sometimes it makes me jump because it just out of nowhere.

At the moment it's a screech sound that he just randomly does.

I think the title of my post was a bit mean, it's just frustrating thinking what will today bring? Anything can set him off. I feel bad of lately that I let him play on his computer longer than I ought, just because that way he's not winding up his siblings and we can avoid a conflict.

Thanks for the useful information, everyone has been supportive and also autism was something I didn't think of seriously, it was more ADHD or ODD along those lines.

Thanks again.

Your son is on the autistic spectrum. You will get no help from the NHS. Don't even bother. Go and see a private developmental paediatrician to get the diagnosis. Then look up Applied Behaviour Analysis. PM me if you like. My son is 11 and autistic.

My daughter has ASD diagnosed at 8. She had loads of problems with behaviour at school but she is articulate and bright so they assumed age was misbehaving on purpose. I went to the GP with a list of my concerns and my daughter was referred to the Child Development Centre (in our area CAMHS diagnosis is for children exhibiting mental health problems).

I was lucky the GP I saw was very helpful. In your situation I would keep bothering the GP until they refer your son for assessment. I have learnt to be a massive pain in the arse and after years of misery my daughter now has brilliant support.

My daughter has probable ASD, diagnosed severe dyspraxia and auditory processing disorder. She was a difficult child who had to leave two school placements. Teaching staff refused to believe there was anything wrong, and labelled her as having emotional problems. I knew there was another problem, and therefore got the NHS and the private sector to help find the answer. She is now home schooled and thriving, a completely different and happy child. An occupational therapist helped with some of the diagnosis, and the speech/ language therapist referred us to the local paediatric developmental disorders clinic. I have been teaching her using SEN strategies, even though she has a normal IQ and academic ability. I have also been teaching her yoga and mindfulness to calm herself down. You cannot rely on schools to do the right assessment, especially where there are complex behavioural issues. The wait-list via the GP will be long to be seen at a local hospital, so please search for a clinical psychologist/ educational psychologist/ occupational therapist who can undertake a private assessment. You can use that report to negotiate with school staff and the SENCO. It is very important this is undertaken before your son starts secondary school, as he will be in danger of being excluded or sent to a special teaching unit where he may never get the support he needs.

I am so sorry that you have been let down.

Make an appointment for your DS but consider going alone write down every "box he ticks" that indicates he should be assessed. You have other DC you know he is wired differently, tell them to stop fobbing you off, would your DH go with you - does he share your concerns?

Hound the GP until he is referred for assessment.

I word of warning about private assessment - some local authorities won't accept them when it comes to EHCP and finding etc. So I would insist on a GP referral even if you also follow the private route.

Start treating your son as if he's autistic. Learn about it. Look for autistic led Facebook groups. Seek private diagnosis if you need someone to explain this to you further.

Your son has different needs to your other children. Support him, don't punish him.

A note about ABA - it's very controversial within the autistic community but adult autistics are very outspoken about the harm it causes. The main advocates for it are neurotypical people not autistics.

The first 3 years part of your post was my experience exactly. I'll then echo the PP that said change expectations and work around triggers. At 3 I knew nursery wouldn't be a good environment for my child so that's where things changed. I coslept, we didn't go to restaurants or places that would distress DC, I slept on their schedule and paid close attention to their cues for sleeping and eating. I responded with empathy and tried to see the needs behind all the behaviours and communication so I could respond to them as valid and important needs, rather than thinking 'you're so naughty' etc and causing a cycle of harm through punishment. That enabled me to understand DC very well, develop that relationship that allows you to teach them to identify their own needs, what feelings were, how to cope and express them safely. Had I put DC into nursery and school I imagine things would've turned out exactly as you've experienced. School is a really distressing, overwhelming and tortuous place for those with ASD, particularly without understanding and support, and unfortunately (as you've found) that is hard to get. I still feel frustrated and sad at times because you worry for your children when they aren't NT, it's like grief in a way. I would really try to identify the needs behind your sons behaviour, find out what is difficult for him and alter the environment aswel as working on coping strategies. I've found by doing this things have become a lot easier over time rather than increasingly worse. As an autistic adult myself I share the experience of many with ASD who found things much worse in later childhood and teen years, and having an understanding and supportive environment would be the best thing an ASD child could have. NHS support was non existent but that wasn't important in parenting in a way that helped DC. Even with a diagnosis there is F all support or follow up (in our area) so the important bit was the parenting.

I agree that you need to get an NHS assessment as well, eventually, to access various Local Authority supports, benefits etc, but get a private diagnosis asap to start the process. And the NHS will offer you no meaningful support or help, even once a diagnosis is made.