To think if we can't get help, who can?

[drspouse]

DS (12) has ADHD and can be aggressive. We are seeing positive changes but he can still flip on the drop of a hat and last week threw something at me that made my head bleed, DH took him out to cool off, I had called the police and they had arrived meantime and this triggers social services to call which is why we do it.
Had a really patronising, I felt, call from social services today. They keep saying we've "refused services", throwing names around (names of people we may have met but we've met about 20 new people and some have actually rung DH or seen him not me, and names of services that we may or may not have been told about).

We have recently been awarded respite which is supposed to be a certain number of hours but none of the agencies can find us any workers and the SW acted surprised (despite there being a national care recruitment crisis). I contacted a mentoring agency - they charge £75/HR and we get minimum wage to pay the worker...

Both DH and I thought we were told we'd be getting a disability social worker. Apparently we should know he has the wrong sort of disability so no social worker.

We are fully aware that we don't always handle him well and the incident last week has also left me with bruises but it was the result of me telling him off for ignoring my instructions and he then pushed me against the metal radiator so I fell over and then he threw cutlery at me. I completely lost my cool as I was covered in blood and I wish I didn't because it just makes DS more wound up and more aggressive.

We've asked for help around staying calm and our mental health (because we are on edge wondering which day he will throw a kitchen knife or push someone down the stairs, and because we don't know how not to react when we are bleeding or bruised). We also want someone to help us with how we handle him and what to do when he's dysregulated. We were explicitly asked "what do you think you need" only to be told "we don't provide that" and then apparently we'd "refused services".

We've been told about 20 times to "call your GP". We've both been through their CBT course twice, me three times, and we're both on medication.

We are at risk of being seriously hurt. We are afraid for our lives and safety. But nobody can do anything about it. What are we supposed to do - wait till one of us is dead? Until he's in prison? Until he's old enough for us to say he has to move out and then he'll just be on the streets and on drugs but we might still be alive?

Also o when ours were diagnosed we had a ‘Neurodevelooment assessment’ which was literally looking at all ND - and both came away with a range of diagnosis. Some expected others a surprise but totally made sense.

my friend recently went through process and now very much they screen - decided probably adhd - assessed for adhd - said no not adhd.

then rethought - weeks passed - they thought maybe autism - re screened - then tested for asd - decided yes it was asd. Such a long process.

So a much more ‘focused’ diagnosis each time and not looking at wider things.

I think our Full nd assessment was better as everything was revealed at once - but I think it is a cost cutting / pathway thing that now they seem to only look at one thing at a time which doesn’t work when often these things overlap!

I know it’s exhausting and hard to keep on fighting - but given you are going through hell - I would ask to be referred to a specialist centre. Maybe there is one more northern etc - but if not London if necessary.

you can’t continue like this. You need help . I say this knowing how life almost broke me dealing with my kids issues.

The one thing we did get from PAS was a neurodevelopmental assessment. We wanted them to include ADHD assessment but the student social worker kept being unable to ring up assessment centres and say "do you include ADHD assessments" even though I told her the exact words to say. So we paid for that privately. He was 7 at the time.
The psychologist concluded he has a spiky ability profile (true), immature emotional regulation (also true), like all the other professionals that there weren't enough signs of ASD to recommend full assessment, and that he didn't show signs of attachment disorder. She agreed with us that he was anxious.
Despite not finding any evidence of attachment difficulties, she said he could do Theraplay and no other therapy would do. We were hoping for parent administered CBT but they won't pay for that because it's not on their list, even though it's got a really good evidence base and Theraplay doesn't.

More than two years later they said we could have Theraplay but only via Zoom and if we didn't commit to a full 6 months we couldn't have it at all. We didn't see the point of sitting in front of Zoom with DS refusing to be in the room for six months so we said no and they refused to reassess us.

The only useful thing we got from the assessment -and only after I told her how to write an assessment that works for an EHCP - was that it said he needed at most two 1:1s but his next school ignored that and had 5 per week.

We know we need help!
We know we need help to remain calm and collected when he is dysregulated. Nobody will provide that.
We also know we need a break from him and nobody will provide that. We have the money but no staff, and there are no schools either.

So this evening he's hit me because we said he can't shout at people LEAVE NOW or say they can't watch him playing a game...
And he's put a submarine bath toy in the bath for me because he thought I'd like it.
He can be really lovely and he makes me so proud sometimes but it's so hard!

I guess the fact she was covered in blood and fearful of further aggressive escalation wasn't a factor? Maybe try walking in her shoes for a day and cease with the 'disgraceful ' crap.

https://www.aspriscs.co.uk/find-a-location/coxlease-school-hampshire/

im so sorry you’re going through this. I think you need to look for termly residential provision. It will probably mean he will be some distance away, but in your situation necessary. A lot changes between 12 and 18. Just focus on what you can do for these years. You can address 18 plus when you get to it. Link above is potential example.

@drspouse I totally feel your pain. I wish I could give you a huge hug and a cup of tea. Not much practical help but know that you are not as isolated as you feel. Will send a prayer up too if that's ok with you?

I’d encourage you again to see that your son very likely did experience abuse and neglect in the womb. What substances and experiences he was exposed to may not have been truly known by social services, but someone doesn’t have a baby removed at birth unless they have very significant issues with parenting. They likely have had mental health needs themselves too.

Have you considered medication so that he can start to access other therapies? I do know children on medication who are as young as 7. It’s not a first choice thing, but can be life saving.

I feel for you @drspouse , it's a very difficult situation.

Going by your previous responses, I think you might not like what I'm going to like what I'm going to say, but I say it with the intention of trying to help, and because I think you need some straight-talking.

I have ADHD and so do both my children. One of them has ADHD, autism & GAD (generalised attention disorder), which were all diagnosed at age 12 and up, and the other 'just' ADHD. I've unfortunately been in the same situation has you of having to call the police to come help re my SEN child - my DC1 with autism & ADHD had a mental health breakdown and was violent. We've struggled to find DC1 the right school and they've moved several times, but we got there and they did very well academically.

Professionally, and without going into specific details, I advise schools on their SEN responsibilities, look for and address potential disability discrimination, and effectively at times mediate between parents and the school on how to resolve the situation.

So personally and professionally I've known of a lot of 12 year olds with ADHD and/or ASD, and I have never seen a situation like your son's where the child only had ADHD. Or even only ADHD and anxiety. His whole profile screams autism & ADHD to me, along with trauma in the mix (Or even no autism but trauma, ADHD and FASD, yet you don't think his adoption is particularly relevant..) I appreciate several screenings for ASD have told you he doesn't have it, but we had to go through several assessments to get our DC1 diagnosed with autism. Often the signs don't really click in until puberty.

I find some comments you made about ADHD very absolute - rather insultingly simplistic - or just wrong. I really think that what you're attributing to purely ADHD just, well, isn't. wish to correct these comments, as much for anyone else reading's benefit as your own:

Talking about feelings with a neurodiverse child is also pretty useless. For a child with ADHD of his age, talking therapy doesn't work.

This isn't true. Talking therapy does work with children with ADHD. Children with ADHD as a generalisation love to talk, including/especially about their feelings as they have so many and are often quite emotionally literate about them. Where talking therapy might not work with however is with autistic/AuDHD children, who typically do not like talking about their feelings.

He's 12 and has little insight into his own thoughts. Given many adults only click they are neurodiverse in their 40s, I'm not sure he's likely to know!

Surely you realise that the reason many adults in their 40s only click they are neurodiverse in their 40s is because is their diagnosis was missed when they were younger and ADHD in particular wasn't a thing? NICE only recognising ADHD in children in 2000, and in adults in 2008? And to be really blunt, the reason why the diagnosis of ADHD in particular continued to be missed in so many people who then realised they had it in adulthood is because many of those people were fairly academic and although their schooling wasn't smooth, it wasn't particularly disruptive. This is not the case for your son. You can't equate his situation with that of adults who clearly masked well and were able to get through school and into work, even if it came at an emotional cost to them.

I don't really know what you mean by "scenarios on the spectrum", do you mean a doctor would assess for ADHD, ASD etc all at once? If you got past the screening for more than one condition, sure, that could happen, but otherwise it would be like doing a full body x-ray for a sore leg.

It's not uncommon these days to pre-screen for ASD when assessing someone for ADHD. It's definitely not like doing a full body x-ray for a sore leg; both ASD and ADHD come under neurodevelopmental disorders.

Any solution that involves us sending him away till he's 18 is just going to have him back here at 18, bigger, more aggressive, and with no qualifications. He MUST get an education even though he doesn't want to.

I don't agree that any solution that involves you sending him away til he's 18 will result in him having no qualifications. I know of several places that provide qualifications, and young people who have done them. They may just not be the qualifications you want him to have at the time in his life you want him to get them.

To get your son the help he needs, as hard as it is IMO you're going to have to loosen your black & white thinking and compromise. At the moment, he doesn't want to learn in school. So I think your focus has to first be on him being happy most of the time in school and at home, with him not getting dis-regulated very often at either. Him learning will then follow, or at least can be addressed after.

Difficult to hear but I do think that @Attention does have some good points that might be worth considering. I have had to accept that my son won't do GCSEs at secondary school,but there is no reason that he can't do some at college when he is older.

@Attention I think you're misunderstanding what I'm saying about screening and ASD assessment. A PP seemed to be saying all children under assessment for any neurodiverse condition should also be assessed for all others eg ADOS if under assessment for dyspraxia.
You seem to be saying the same as me -
Every time he has undergone an assessment for anything eg EP report, ADHD assessment, dyspraxia, SALT - they have asked us to fill in an ASD screener and have said "some tick boxes but not enough to go forward to assessment".
We could of course lie on the screener and say he doesn't have good metaphorical and non literal language, etc etc, but where would that get us?
And maybe some preteens with ADHD and excellent verbal skills and insight could a) understand what ASD is b) tell you they've got it and c) engage in talking therapy but the evidence is that most don't. DS definitely won't engage in talking therapy so it's pointless telling me he should be able to.

I'm not sure why the prison population has huge levels of undiagnosed (and diagnosed) ADHD and the rate of exclusion is 8x higher in ADHD (it's 5x higher in ASD which is also awful). Maybe children with ASD are actually more aggressive and have more behaviour problems but the justice and school system treats them better?

I'm not entirely sure of your point on qualifications, maybe you can explain it a bit more? We have been searching and searching for a good residential school. We'd love to find one but if it was like he's in now, or the learning disability schools we keep being told about, they don't encourage reluctant but academic children like our DS. He's very motivated by success. But he's very reluctant to do anything hard.

We don't know how to make him happy. Letting him do what he wants all the time doesn't make him happy - or at least it doesn't stop him being aggressive. It just makes him anxious, unable to go out, unhealthy, unwashed, and still triggered by things we can't control. He's just hit his sister because a shop isn't open. Reducing expectations does not make him less triggered by things we can't control. We tried that and we were just tiptoeing round him, waiting on him hand and foot, being called slaves, but still getting aggression.

DS definitely won't engage in talking therapy so it's pointless telling me he should be able to.

I didn’t tell you he should be able to, it was clear to me he probably couldn’t. What I was telling you was that many other 12 years with purely ADHD can and do engage in talking therapy, yet you made a blanket statement that they can’t.

I also know many children who it turned out had both ASD and ADHD who could or can also engage in talking therapy, including my then 12-yo DC1 and a boy who has just been permanently excluded from school. It’s not as simplistic as them “telling you they have it [ASD]” - it’s about them being able to describe how they feel or what bothers them.

Btw CBT can be successful with young teens with autism if it’s autism-specific.

Point I’m making is that you’re taking what your son can and can’t do and then stating that is the case for all kids with ADHD. It’s not.

Maybe children with ASD are actually more aggressive and have more behaviour problems but the justice and school system treats them better?

I’m not saying they do, I’m saying that IMO your son has the presentation of having both ADHD and ASD, which is a different presentation to just having ADHD or just having ASD. But yes the justice and school system do treat autistic people ‘better’ because autism is more disabling and more obvious. Most people with ADHD don’t seem disabled on superficial meeting. And there’s been a lot of misunderstanding and prejudice against ADHD.

It’s not just the violence though that was making me think your DS’s issues stem from more than just ADHD. I don’t have the experience to talk about trauma from being adopted, but I agree with others that you shouldn’t discount that either. The anxiety you describe your DS having, that is definitely not just coming from the ADHD. It’s very unusual for a child with purely ADHD to almost completely avoid connecting with other children. When you have ADHD, you crave connection and the stimulation it brings.

He's just hit his sister because a shop isn't open.

Going back to violence though, this seems like a classic ASD or AuDHD reaction, not ADHD. Because the trigger is his expectation not being met, and having to pivot in his mind that he can’t do what he’d internally planned to do. That sounds difficult for him, and he lashes out.

Him watching pre-school programmes every day also sounds like a boy who craves security and routine and the comfort of much younger things. Again that does not sound like ‘pure’ ADHD to me.

I’m very sorry you don’t know how to make him happy, that sounds very hard. I didn’t btw say that you should make less demands on him, what I was saying in terms of his happiness is that you might have to let go of your own expectations of what sort of education he should have.

Also in terms of prison and ADHD, there’s evidence now that many of those people (and let’s face it, we’re talking almost exclusively about men here) were mid-diagnosed and in fact what seemed like ADHD is in fact trauma.

My statement “Most people with ADHD don’t seem disabled on superficial meeting” is rather crass. I haven’t put it particularly well. I don’t want to imply that people with ASD always seem disabled, that’s obviously not the case. But ADHD can be hard to understand because many of its symptoms are things many people experience and not obviously directed by a disability: impulsivity, risk-taking etc. It’s only becomes more clear that could be ADHD when it’s a pattern that affects the person’s quality of life.

I think you are working with children with ADHD who are in mainstream?
Because that's not my DS. We are finding the expectations of what should happen in ADHD is really unrealistic and what everyone says - "if you've met one person with autism you've met one person with autism" - is also true of ADHD.
First school expected that medication would solve all problems. Or DD may also have ADHD but it's inattentive/in one ear and out the other/distracted in the middle of a maths problem. My friend's DS has ADHD and can be oppositional at school but in a reluctant way not aggressive, and he's aggressive at home. She (the mum) has ADHD too and has held down a job and been a good girl at school but it's her racing thoughts that her medication helps. Etc etc.

No, children with ADHD don't typically avoid other children but a) DS didn't do this till he was about 7 and was illegally off rolled from a school he loved and b) extreme social anxiety does cause this - at times it's been like agoraphobia. He's very much the class clown and after an initial anxiety he seeks social interaction with adults, but children are too hard for him because he's immature.

And yes, I know some children's ASD isn't seen till they are teenagers, it's totally possible BUT AFAIK they are usually very academic and quiet. It may still be the case but there weren't any early signs.

He will tell us that his problems are that we are bossy and horrible, whether he's heightened or calm there is no other response (well, apart from kicking the person that asks).

We've tried mainstream and no school will now take him. We've tried low ambition SEMH with lots of outdoor activities, he's still not very happy. We can't find any other school that will take him but isn't actively terrifying. I mean, maybe some SEMH schools have experience with traumatised children but would being alongside children with even more severe problems be good for him?

We'd love to know what to do to help him but everything we are advised to try doesn't work except for some success with reducing accommodations, holding high expectations and gradually introducing him to new challenges.

And we are highly aware that things like prenatal exposure to DV can affect behaviour but how does this help us to help him? The behaviour is the same. He can't talk about it, it's not like witnessing it aged 5. He has a family history of ADHD, possibly from both parents, so that's a vicious cycle too. He's old enough to understand his story and we do tell him but it's all very abstract to him at the moment.

Everyone, us and school, try not to frame his disability as his fault but it's hard and we get language from school that breaches this daily, and we don't really think it's helpful to tell him his brain is "making him" hurt his sister because it's exciting and gives him a dopamine fix. We think it's more effective to try and make it less exciting but it's REALLY hard to stay calm and boring all the time. That's what we know is most effective but we get no help to actually do that.

I'm another who thinks his behaviour sounds like ASD. I don't have the professional expertise of other posters just experience of raising an autistic child. My DS is definitely autistic but is actually brilliant at metaphors he's also very sarcastic at times. They don't all present the same.

We did back off in terms of expectations and demands as he is not a typical child. We also treated him as a much younger child by about 3 or 4 years in terms of support we gave him and our expectations of his behaviour. I know you have concerns over this approach but your expectations of him seem high even for a neurotypical child. For example expecting him to either help prepare dinner or set the table this would be met with a little resistance from my NT 12 year old DD.

My DS is now nearly an adult and he is perfectly capable of cooking his dinner despite not having to help at 12. He unprompted will help with general household chores. He washes regularly etc. I appreciate it might not be right for your son but it can work for some.

I think you are working with children with ADHD who are in mainstream? Because that's not my DS.

I work with schools and parents where children with ADHD (and/or ASD) are at risk of being permanently excluded or where their needs just can’t be met. Most of those leave that mainstream setting for a specialist one. Is that not exactly what happened to your son?

We are finding the expectations of what should happen in ADHD is really unrealistic and what everyone says - "if you've met one person with autism you've met one person with autism" - is also true of ADHD.

Thank you for pointing that out to me, someone who has ADHD and two children with ADHD and therefore has much more experience of ADHD than you

You’re not the first parent of a child with ADHD I’ve come across who thinks because they’ve read lots of books and follow American resources re ADHD, that they understand it better than adults living with it. It’s patronising, arrogant and disrespectful.

You’re finding the expectations of what should happen in ADHD unrealistic because your son does not just have ADHD and so cannot meet those ADHD-based expectations. That’s a fact. For a start, he also has very high anxiety, and that sounds like one of the main problems. What have you done to address that - have you tried anxiety medication?

What we find is that if we drop one expectation, five go with it and he starts calling us his slaves.
If we add one, gradually, the first time he shouts and stamps his feet or throws something, the second time he partly does it and by day 3 it's part of his routine but if we drop it more than about once it's back as if we never tried it.
With academic and motor skills (he has dyspraxia) he needs constant practice (for motor skills even to stay still). But at school he goes to Pupil Support if he is aggressive and that's a lot easier than trying a new task. He could button up his shirts at 5 but can't now because he's not been practicing. The clinical psych leapt on this as "lost milestones" but if that's the case I'm autistic because I can't play the piano as well as I did when I was 15 and practiced daily.

Serene would you mind sharing the kind of things you DID say were a problem for your DS that led to him getting an ADOS etc?
Because however many parents and amateurs say "he's definitely got autism" if all the professionals with diagnostic capacity say we aren't eligible for assessment, it's pretty useless, unless we lie of course.
The other thing people kept saying was "oh he'll appear more autistic on his ADHD meds" but it's the opposite. Like many DCs he's massively, dangerously impulsive off them and also all his bouncing/running on the spot reappear as soon as they wear off and he looks MORE like he's stimming (and he does it a lot less on the meds). Our take is it's unregulated hyperactivity and dopamine seeking, and we'd expect to see more self soothing on the meds -our original psychiatrist who diagnosed ADHD told us to watch for that.
But as I say, we may be missing something. But aggression isn't a diagnostic criterion for ASD!

I'm not massively sure it matters if he has asd, audhd or just adhd. There aren't hugely different techniques to help between them. I'm fairly sure, regardless of diagnosis, OP has tried common techniques for asd to see if they help. Like routines, social stories rehearsals, now next, etc. She's tried low demand and not got on with it.

It may help an extra diagnosis opens up different schools or services or medication I suppose. I dont know enough about medication..

I would say trauma is an issue as, regardless of adoption, being off rolled and struggling with your peers is traumatic.

My son has a diagnosis of ptsd from his crappy school experience. He was referred for EMDR which, because it didn't involve talking, seemed a good idea and seemed to have an evidence base. But he hasn't made it up the list yet, and quite frankly, the chance he would actually do the therapy is quite low.

None of which disprove ops point that help isn't out there or gives her any more tools to help. Sorry!

It may help an extra diagnosis opens up different schools or services or medication I suppose.

It absolutely does @Spendonsend The OP herself has said in her posts that certain schools they may consider won’t take her DS because he doesn’t have ASD.

And yes, there definitely is different techniques to dealing with ADHD v AuDHD v ASD, even though of course there’s some overlap. Just in my own home I have one with AuDHD and one with ADHD and how we parent them is a bit different, because there needs are different.

*their 😳

I appreciate children with different needs need different parenting. Two children with asd aren't going to respond to all the exact same strategies either. Social stories and timetables are not for my son for instance.

I suppose what I meant was asd, adhd and audhd are spectrum disorders with a lot of overlap and therefore the techniques to help are a spectrum too which you tailor to the child you have and it's always useful to have a little wander across techniques used in other nerodevelopmental disorder to see if any fit.

Im going to ask...................how is his sister dealing with it? How old is she

@Spendonsend “A lot” of overlap between ASD and ADHD (AuDHD by its definition is a combo) is something some people with ADHD and ASD would disagree with! Personally I’d go with “some” rather than “a lot”. ASD and ADHD are distinct conditions, although in at approx 50% of cases people will have both, which again presents differently.

Some of the best advice we received, from a family therapist, was to see AuDHD almost as a separate condition. It’s a difficult one primarily because there’s some opposing contests between ADHD and ASD: spontaneity v routine, impulsivity v rigidity. Etc.

But it absolutely matters for school which is one of the OP’s central issues.

Aldo, part of why I made the point to the OP about it not just being ADHD (whether the ‘as well as’ is ASD, trauma, anxiety, FASD or all of the above) is to correct her on a couple of the categoric but incorrect statements she made about ADHD. As much for the benefit of anyone else reading. But the OP ignored that, went on to lecture me about ADHD despite me having it and her not, and when I pointed that out, came back on but ignored my point and hasn’t apologised.

To be brutally blunt - like I said earlier, having been in a situation where I had to call the police because my autistic & ADHD child had a MH crisis and was violent - if the OP really did know what she’s talking about and what works best, she wouldn’t be in a situation where her son has deliberately physically attacked the OP, resulting in her to go to hospital twice in several weeks.

@drspouse

Fellow adoptive parent here (👋🌊 - emojis chosen to represent not waving but drowning!) Forgive me if you simply want a rant, to which you are perfectly entitled, and I am most definitely not going to teach my grandmother to suck eggs. My AD1 is 16 now and she has the following diagnoses: registered blind / autism / ADHD / neonatal abstinence syndrome / probably FASD (but hard to get diagnosis) and binge eating disorder. You will most likely know that the extent of your AS’s conditions/disgnoses will not just be ADHD. You will know also that there is significant overlap between trauma, neurodivergence and attachment disorders. Are our children correctly diagnosed? No, probably not but we take the diagnoses the physicians who are not necessarily versed in children who live with trauma are willing to give. We take anything that will help our children.

My AD1 is extremely violent, aggressive and verbally abusive. She makes false allegations against me (I have been arrested, detained in custody for 21 hours and interviewed under caution). I have been taken through Child Protection proceedings. I have AD2(8) who is a victim of her non-birth-related sister’s violence and abuse. Honestly, I think you need to stop expecting help from CSC: they do not get adoption and the needs of children who have suffered the most primal wound of all ie being removed from the person who carried them for nine months. There is very little training for SWs on adoption, trauma, the in utero effects of exposure to drugs, alcohol, domestic abuse, chaotic lifestyles and the heritability factors of neurodivergence and mental health disorders. CSC is heavily weighted towards safeguarding and parent blaming and shaming. Child-on-parent violence and abuse is a subject that people really don’t want to talk about, especially SWs.

Please, I urge you to make contact with PEGS and CAPA First Response which are both organisations doing brilliant but very different work in the field of child-on-parent violence and abuse. You will be seen and you will be heard. And none of this is your fault. It is all because of what went before.