Its taken just over nine months for my son to get an appointment with our local CAMHS unit (I believe the queue was jumped slightly after he threatened suicide at school and disappeared for a couple of hours which at least gave someone else an idea of what we have being living with for the last eighteen months).
His symptoms seem to be a form of OCD, which are affecting where he can and can’t go without extreme anxiety. Ever since we have been involved with CAMHS it seems like we are being railroaded into an ASD diagnosis (This dates from before they met him). I understand that ASD is a spectrum and that OCD can be related to ASD however there seems to be a huge confirmation bias going on. Symptoms and character traits of a normal year 7 child going from a small school to a big school then leaving that school for lockdown and starting again are being used to reinforce the diagnosis. Our son has met a therapist once, at the time she agreed that his symptoms didn’t seem ASD like, however the doctor making the assessment, who we have never met and who hasn’t met our son, seems to be giving more credence to a questionnaire completed by the school (who because of the lockdown and it being a new school barely know him) than us, or the therapist (who seems to be backtracking on what she said after her assessment).
I should say that I personally believe that we are all somewhere on the ASD spectrum and I understand the ‘grey scale’ concept however what I believe our son needs is CBT. CAMHS however are jumping from the grey scale description of ASD to saying that CBT is not suitable to <span style="text-decoration: underline;">anyone</span> with ASD. Frankly the ASD diagnosis seems to be a passive aggressive way of saying ‘we are under resourced and would prefer you to go away’.
The school is again under resourced and would rather ‘the problem’ went away. It has been suggested that he should be home schooled, which in our area equates to waiting a year before a tutor comes in for 4 hours a week, however at the moment he is keeping things buttoned down and is only being sent home twice a week (because of his own distress rather than disruptive behaviour). Allowing him to stay home is only going to make matters worse (we are in touch with enough parents with kids with similar problems to be sure about this).
Sorry this is turning into a horrible rambling post but I’d appreciate any advice on how to go about getting something positive from CAMHS or other ways of helping our son as quickly as we can.
Thanks
We had a brief contact when FB jnr was in year 4- low self esteem as he was noticing more the difference his CP made him from school peers and the death of his grandad a few years previously was still an issue. CAMHS appt took ages and was a bit wishy washy. A change from mainstream to SEN school & play therapy helped for him.
Based on a friend's experience when her son started having issues around yr 8/9, push, push & push again even though it will be heavy going. She regrets not having done so (single mum, demanding job & younger sibling limited her time to spend chasing up) and not much was put in place/assessments done for him. He was not in school for yr10-13. Now he's 18 he comes under adult services & she's finding it's in a different league to CAMHS and not in a good way.
Sorry it's not positive- think it's a reflection on the demands they face so you have to be on top of them.
Thanks that’s pretty much the impression we are getting.
Its the idea of not even attempting a potentially life saving (I really don’t think I’m exaggerating) and cheap (in medical terms) treatment because it <span style="text-decoration: underline;">might</span> not work.
I can’t imagine any other form of medicine where you would start with this attitude.
I know it must be a desperately difficult field to work in but starting with the preconceptions and attitudes we’ve been experiencing doesn’t give us much faith in what we’re being told.
Hi, I hope your son is feeling a bit better now.
I'd make a few observations based on personal experience:
- CAMHS is hugely under-resourced and they will jump at the chance to deny treatment if a child has an ASD diagnosis.
- This is just another example of how ASD kids are neglected by the system, because being autistic doesn't mean you can't be depressed or anxious - it means you're more likely to be. But oh no, CAMHS can't help because autism can't be cured.
- I've seen a few parents (some who should know much better, e.g. a primary deputy head) in blatant denial that their child is very likely autistic, sometimes ending up with a string of obscure disorders instead - which cynics might say are designed to mollify middle class parents who don't want an autism diagnosis.
- Being fully open to a potential ASD diagnosis is by far the best course of action for parents and children. I was resistant originally, but it was so much easier once I'd accepted it and we had an explanation for us and for our daughter about her anxiety, her incredibly difficult behaviour and stuff like her sensory issues.
Please don't take it that I'm diagnosing your boy or accusing you of being in denial. Of course I'm not. I'm just encouraging you to lower your defences and to have a more thorough assessment - because if he is autistic it will be really helpful to know sooner rather than later.
There is a charity called Young Minds, it is worth giving them a call to see if they can recommend an alternative course of action.
CAMHS in my experience is a waste of time.
link:
https://youngminds.org.uk/find-help/for-parents/parents-helpline/#parents-helpline
Chakaping I didn’t take it that way. I believe that he is somewhere on the light grey end of the spectrum however I have worked with and for very successful far further along the spectrum than him. In himself he is very happy in his own skin however the OCD which tells him that a certain area is 'contaminated’ is ruining his life. As you say they are using ASD as an excuse to make no attempt to help him address a very tightly defined issue (which is getting worse).
As I understand it the earlier OCD is treated the more successful the treatment is likely to be but everything on the NHS seems to be designed to push treatment further down the line.
The school say all the right things but there is the distinct impression that they would prefer it to be someone else’s problem.
Retro thanks for the link I will try that
I work in the SEND sector and am happy to have a chat if it would help. Lots of areas are having difficulties right now, and sometimes it’s about how you navigate the system.
he is very happy in his own skin
That's good to hear.
they are using ASD as an excuse to make no attempt to help him address a very tightly defined issue
If you can't get what you think he needs in a timely manner, I'd consider just paying for it yourself - a limited course of CBT can't be too pricey can it?
@Richie_B also work in SEND services drop me a message if you want to chat, CAHMS sounds familiar, school are breaking the law (or it sounds like it)
OP, I don't have anything helpful to offer, but from one Dad to another, you sound like you're doing an awesome job and hope you get the help you need.
It's taken us over 3 years to get through cahms and get an ados assessment for my daughter. Honestly it's been a nightmare. We have chased them all the way and finally after a 2 hour assessment last week they diagnosed her with autism. Cahms buggered up assessments along the way with the school. The school even had someone who had never met her fill in an assessment based on her year end reports when I insisted on reading it i knew. So that delayed things even more. Now taking her out of school as it's not the correct environment for her. Just trying to establish the best course of action now.
Anyone who needs to go through this has my simpathy as it's a long frustrating process.
Karnali & Palmer thanks for the offer, I might be in touch if you don’t mind. To be fair to the Senco at the school I think she is completely snowed under, it sounds like a significant proportion of the year 7s have issues of some form or other, if only that they have got out of the habit of how to behave at school. Things aren’t phrased as bluntly as I might have implied its always suggestions that ‘it might be best for his wellbeing…’ The meaning is pretty clear (unless you are a lawyer).
If he does stop school in his present condition I can’t see him going back or getting any meaningful education. We know of two children who aren’t able to go to school and both are only getting the four hours a week tutoring and that was only after a battle. Our son up to now has been pretty engaged with education, but is a nightmare when he gets bored (The frustrating thing is that everything you say can somehow be twisted into reinforcing the ASD theory - we sat through one meeting where two completely polar opposite character traits were both used to back up the thesis).
We are investigating private CBT but you have the opposite problem to the NHS in that everyone is promising you the world but you are not sure who is actually any good. We have had some recommendations for people in Sheffield but as I understand it CBT is more likely to work if the patient and the therapist are compatible. We were waiting for the CAMHS assessment but from the summary we have seen we should have just got on with it six weeks ago.
To a certain degree I am guilty of shying away from the ASD diagnosis but this is only because it isn’t at all helpful. How he addresses the world and other people has never been a problem. As someone else said its an excuse for not trying to sort out his real problems.
LimboJimbo
Thanks it doesn’t feel like it at the moment. At the moment I am serious danger of being sent to Broadmoor myself (Luckily for them my ‘local' MP lives 200 miles away and Boris only visits when the local town floods)
is a nightmare when he gets bored
Again, not diagnosing - but has ADHD been considered if the issues centre around focus?
My daughter's lucky enough to have that as well as being autistic.
🙂
No , I don't but I should have. Been waiting for a diagnosis for over two years , just keep getting told it will be xmas , no the end of the year , no ........
I don't think anyone has mentioned this but there is also a disconnect between children's and adult camhs so you have to go through the whole process again when they turn 18.
Whereabouts (ish) are you? My other half works in mental health so can possibly point you in the right direction or offer some options.
ADHD - It would fit but I think being a 12 year old boy fits better
We’re in the Derbyshire Dales bit of the Peak, if we stick with CAMHS our local CBT centre is Chesterfield but we have to get past the ASD barrier for that. I’ve been given a recommendation for a private centre that does CBT in Sheffield but as I said we were hoping that CAMHS would be more positive.
I am only just down the road from you in Derby and have been involved with CAHMS through my daughter for the last five years (wow that's a long time I now realise). From speaking with others, they have actually been pretty good in terms of getting her assessed in a timely manner (<12 months) compared to what you hear others waiting elsewhere in the country. As said though, they are massively understaffed, underfunded and working with limited resources. We were provided access to CBT but told it is fairly pointless due to her age and she got DBT but again we had to wait until 14.5 as that was defined as the age they become eligible as the research says younger than that it doesn't work, mainly teenagers are too pig headed to engage and think they know better.
I would say push as hard as you can with the school and local authority to get an assessment for an EHCP, once that is in place you get access to far more support from SEN staff and it takes time to get it put in place but probably makes a bigger difference day to day.
Lots of sympathy and empathy for you.
HYMs in Stockport, no idea why they're not called CAMHS, to be frank aside from the crisis team they were a waste of time. We were fobbed off at the earliest opportunity.
The transition from primary to secondary was too great for our son. He's struggled with dyslexia throughout his primary years, and we have finally got a ASD diagnosis after a lengthy process. It came as a relief to us as parents, and my son, he actually punched the air when I told him.
He's managed to mask, but secondary school was too much and he ended up suicidal about 20months ago, we had some very dark times.
The pandemic then struck and its like he is still going transitions at school, it's been crap. Mental health services on the NHS have been pitifully under resourced and I don't see things improving.
Over the years we've paid for counselling, he was too young to get much from it, hypnotherapy, visual therapy and he's now under the care of a psychiatrist.
After a crap start school are starting to.understand home and we're now battling the process for an EHCP to help him into early adulthood.
Anxiety is his biggest battle.
What breaks my heart is we.can afford to support him through this, there must be thousands of kids that can't access the right support.
Whatever route you choose, good luck, happy to give you our perspective on our own battle with system and answer any questions you may have via PM. I am not an expert, the wife is becoming one though!
Steve
CBT and ASD
CBT can provide additional ways for folk with autism or autism like behaviour to understand and manage situations they might find challenging.
CBT should really be promoted in the language of self agency and management not as a cure.
I’ll message you my email address in case you need help with this, I’ve a lot of experience in this area. What the school are suggesting is wrong, tell them to read the SEND code of practise instead of trying to offload problems!
The school is again under resourced and would rather ‘the problem’ went away. It has been suggested that he should be home schooled, which in our area equates to waiting a year before a tutor comes in for 4 hours a week, however at the moment he is keeping things buttoned down and is only being sent home twice a week (because of his own distress rather than disruptive behaviour).
Are they saying home schooled FT, or on a reduced timetable? If the former then they can't do that, equates to unofficial exclusion and Ofsted would have a field day. If they are suggesting you remove him formally from school role and Electively Home Educate him gain they shouldn't do that. If the latter then school should have put in place a risk assessment, signed parental consent and it should be reviewed regularly with a formal meeting. Again happy to chat outside of this thread if you want advice.
Things have gone downhill again today he was sent home after abhor and a half. At least in the short term it doesn’t look like he can go back without help.
We have tried to discuss a reduced timetable at school but there wasn’t a positive response, although this was an informal conversation. At the moment he is too anxious to go into school and gain anything.
In an ideal world immediate treatment would help but due to funding immediate and CAMHS aren’t in the same room.
Does anyone have any positive experience of private child focused psychiatric help in the Sheffield, Derby, Nottingham areas? Recommendations would be gratefully received.
Sorry to hear that.
I posted a link to Young Minds earlier in the thread, do give them a call, they are excellent
I have another date for camhs, end of September. Will see if that happens.
