I’m at my wits end

[Nochangeplease]

I can’t cope anymore. Everything is a challenge. The moments where things are ok and I can see my lovely little boy are getting less and less it seems. I love him so much, he is so loving and innocent. But he is also an absolute nightmare.

We went for an autism assessment and they said although there’s traits he doesn’t quite meet the threshold. I’m not sure I agree. I’d never really considered adhd until something I read on here the other day but now I’m not so sure.

There are issues everywhere. Home, school, parks, other people’s houses, days out. Anywhere.
I’ll try and list some issues in the hope someone can maybe suggest what they think is going on or share some stories.

The school know there are issues and give support but have never really suggested what they think might be the problem. I wonder if they think it’s behavioural or parenting. I really don’t think it is.

1. Angry outbursts not proportional to what’s happened.
   
2. When angry can be completely out of control.
   
3. Low self esteem
   
4. Doesn’t want to engage with any schoolwork, mostly to do with hating writing but is actually quite bright.
   
5. Has long term friends at school but doesn’t really make new friends easily, like at a park or something.
   
6. Can struggle with friends as he is not as emotionally mature as them so will struggle to sort out disagreements. I have to keep a close eye in case of angry outbursts.
   
7. No regard for any rules when angry. Will run out of class ect at school. Takes ages to calm down
   
8. Some sensory issues, around food and clothes but these have improved a fair bit since toddler years.
   
9. Will not talk about anything emotional. Will not tell me what’s happened if something has happened at school. Point blank will not discuss anything ever.
   

10. Anger is default emotion. Very rarely sad.
11. Gets obsessed with things he likes. These change every few months or so.
12. Doesn’t sit still much unless on an electronic.
13. Is very very annoying indoors. Just goes around deliberately doing things he knows will annoy people or he’s been asked not to. Then gets annoyed that he’s in trouble
14. Have to repeat instructions to him so many times.
15. Still needs a lot of help/prompting to get dressed, brush teeth ect.
16. Doesn’t like change in routine but can tolerate it. Worst thing in the world for me is when people casually tell him they’re going to meet us at the park or something, and then don’t.
17. Amazing memory. Especially for facts about things he’s interested in.
18. Enjoys talking to adults and is sociable in the sense he likes meeting his friends and craves that.
19. Very controlling. Wants everything his way and immediately starts kicking off when it’s not.
20. If he asks, for example, for me to buy him something, and I say no, he will go on and on all day, possibly even for weeks. To the point I’m driven mad by it.
22. Will sometimes ask Something as if he’s forgotten he just asked 5 mins ago. Like ‘can we go to the park’ when I had just recently explained why we couldn’t go 5 mins ago.
23. I think he takes things quite literally and doesn’t always understand sarcasm and humour. Although he does sometimes I think. He often looks at me to check if someone’s joking.


Sorry it’s so long. If anyone manages to the end, I’m grateful.

[Ellie56]

How old is your son and how long ago is it since you went for an autism assessment?

Your post screams autism at me.

We knew our son was autistic when he was three, but he wasn't diagnosed until he was nearly eight.

[CLCB07]

How old is he?

[Nochangeplease]

He is 7 and it was less than a year ago so I don’t think they’ll consider it again so soon.
I remember asking his nursery teacher if he was autistic so the problems have always been there although they’ve obviously changed over the years.
In nursery they used to have weekly stay and play sessions for parents and he’d be the only child who wouldn’t sit with the others at carpet time and would play up massively when I was there. I could see the difference. Although apparently he sat with them when I wasn’t there. Although most of his teachers in the early years said it was a problem and he usually had to be sat on the outside corner.

[TGISunday]

Sounds like adhd. Possible autism crossover. I can relate to a LOT of what you've said

[Nochangeplease]

I read a post by a parent of a child with adhd the other day and so much of that also rang true. I’ve always thought autism, so had never considered it but now it’s on my mind it’s almost obvious. Maybe it’s a bit of both? Is it even possible
To have a little bit of both, making a diagnosis for one or the other difficult?

[TGISunday]

I can defibrillate to 13 out of the 23 you wrote. My Ds is diagnosed with adhd and autism but the spectrum is huge

Do you have any upcoming appointments?

[TGISunday]

Relate not defibrillate 🙄

[TGISunday]

Actually 17 things

[Hawkmoth]

Check out PDA and Sensory Processing Disorder. Otherwise, you aren't alone.

[Nochangeplease]

We was discharged from CAMHS after a few appointments and no follow up after the assessment.
School mentioned doing another referral in September but I’m not even sure what for.
I’ll might go to the doctors in the meantime. It’s been especially bad recently. Possibly because of all the changes in routine.

[Nochangeplease]

@Hawkmoth oh yes can definitely relate to those too.
I feel like people (processionals) think I’m just clutching at straws to explain away bad behaviour but I’ve always known he is a bit different and this behaviour just isn’t normal.
I mean, I’m not perfect but my parenting isn’t so bad that it’s caused this level of behaviour problems surely

[TGISunday]

I've had no dealings with Cahms, not sure if it's a regional thing. I'd go to the gp. Ask for a referral to Cyps/paediatrician. Write everything down before you go, all the symptoms and issues and give it to the dr. If at all possible, don't have your dc in the room at the time but available to be called in if necessary

[Nochangeplease]

I will call them this week. Not even sure if they’re doing face to face appointments.
Does anybody else find it hard to answer certain questions or explain things about their child that makes it sound like you’re describing them negatively? I really hate it. I feel so guilty like I’m making him sound horrible. I struggled with this at the assessment.

[Littlefish]

Please look into ADHD. Many of the behaviours you listed can be attributed to it.

[TGISunday]

With any appointments you have to be as brutal and honest as possible.

Which is why I said write it down and not have your dc in the room...but accessible if the dr wants to see him in person

You're not slagging your dc off. You're not telling them how hard you're finding it. You're not telling them how hard your dc can be to manage

You are telling them how day to day life is and that you need support mechanisms and strategies in place to cope with what's happening. If you don't know any strategies (as I didnt two years ago) you don't know what will help

There are masses of ideas/plans/strategies/support out there but you have to know what you're looking for. Are you looking for behavioural support? Adhd support? Autism support? Odd support?

Without professional help you can't look int be right direction . It's a learning curve for both parents and dc imo and you can't do it alone . No shame in asking for help

[Ellie56]

You are not describing negatively, you are describing your child's needs. Just explain how things are, the way you did in your first post. You could even print your list off and have it with you at the appointment so you don't forget anything.

You have to be as accurate and as honest as possible, otherwise your child will not get the support he needs.

[Nochangeplease]

I really just want answers. Deep down, I know. I just want other people to understand too. I’ll call the gp.
I’m scared.

[SilverLiningSearching]

I was in a very similar position to yourself, it is a nightmare dealing with your child’s challenging behaviour with no answers or support.
We got told by CAMHS ‘ autistic traits but not autistic’. I ended up scrapping money together for a private assessment by the Lorna Wing they were mystified how CAMHS had failed to diagnose DS .
Some people will say that NHS is more valuable, but I have not encountered issues using the private assessment. The private assessment actually showed up how flawed the CAMHS assessment was.

[Nochangeplease]

Do you
Mind me asking how much the private assessment was? I’d love to do it but I’m on my own with a low paid job so it’s unlikely I can afford it

[Littlefish]

DD's private assessment was about £900 I think. The process of getting medication sorted will cost about another 1k, I think.


Her GP is prepared to take over prescribing her medication once the private psychiatrist has got her on the right medication and dose.

[CLCB07]

My son has a dual diagnosis and he started the process when he was 7. He is a teenager now. Write everything down with a supporting statement from the school and take it to your gp. Message me if you want some advice. Good luck.

[Tragicroundabout]

Gosh, so much of your post resonated with me. DS2 (11) displays much of this behaviour. We were referred to CAMHS and the practitioner thought an autism assessment was required, but a second professional had to see him before the process would start. Thus was just before lockdown so everything has just come to a halt - massively frustrating. I second what another poster said about PDA as I think my son also fits the profile for this. My son seems to mask his difficulties at school, but we were referred to CAMHS by our GP. I'd keep pestering if you are concerned. Good luck.