CAMHS help please

[Cookie1986]

Hi all,

This is the first time I have reached out for guidance as generally, support for my daughter has always been great but I am really struggling to get the right support and don't know where to turn.

My little girl came home to us at 1 year old and we were under no illusion that SEN would be a barrier to learning and behaviours. Aged 6 we had a confirmed diagnoses for ADHD which we expected due to her birth siblings also having this confirmed. However SALT, EP, school and CAMHS were concerned she showed strong characteristics of autism. As she had ADHD and was disruptive in school they recommended medication, which worked for a short period of time. Within this time frame we secured a fairly comprehensive EHCP and I came out of work full time to manage my daughters needs as she can just about manage school. Things came to ahead again around aged 9 as the same patterns emerged from her younger years and so medication dosage was increased. This did not work and school were unable to manage her medicated. After several meetings with ADHD CAMHS and them seeing her medicated it was decided that the medication was not working with the rebound effect being worse than the ADHD itself. This was because her autism characteristics were becoming more profound and this was not being managed (I can't remember the medical way in which it was explained but it made complete sense at the time). After this it was agreed by ADHD CAMHS that she be discharged from them as they can only offer medication and we proceed with an autism assessment for a diagnoses so further support can be provided for her. Her EHCP and schooling needs have been adapted for this and this is working well. We have finally reached the Autism assessment stage aged 12 and after them seeing her for 5 minutes and various conversations with us they have decided that she does not have autism only ADHD and medication is likely her only option which she will need another referral for, there approach is we can fix ADHD not autism. To say I am at a loss is an understatement, my daughter is now regressing to a point where she can't dress herself, soils herself, is having panic attacks won't get out of bed and complaining of general aches and pains. When I am asking for support I am being told she has an EHCP and because she is accessing education they feel her behaviour is normal for those with ADHD and so I need to manage this at home. The individual in question then went on to ask what support I have and that I need to reach out to charities to help manage my anxieties as maybe I need to feel validated. At no point have we pushed for an autism diagnoses, we have always been led to this by other professionals and now we are finally at this stage to be told she doesn't have autism, only ADHD (but we are to proceed with all autism strategies) is confusing for us and distressing for her as she does not wish to have the ADHD medication, but cannot access any of the CBT's for anxiety and autism because she does not have autism according to one person at CAMHS.

Sorry for the long post, I know it is difficult to get the right support in place for our LO's but I am hoping someone more experienced than myself my have guidance so we can avoid a complete burnout of my little girl. Thanks

Hi. Sorry, this sounds pretty challenging.

There is always huge debate over whether an adopted child has asd / autism / developmentalvtrauma/ foetal alcohol syndrome. It can depend on who you see.

Only adhd attracts meds. The rest have to be managed via parenting strategies, school adjustments, therapy for the child and maybe the parents.

Have you considered foetal alcohol or developmental Trauma?

Thank you for getting back to me.

This was our understanding with ADHD and in her early years did offer a solution for a brief period of time.

As far as we are aware their birth mum does not drink or use drugs, her SEN is so profound she lacked capacity to parent her children. As we often hear her story is tragic and from our experiences with letterbox she is a real gentle soul.

Its tricky on trauma, nothing has been diagnosed and professionals have not indicated this to be a trigger at this time. However, we have had school professionals suggest attachment disorder in a way of separation anxiety (she does not like to be away from myself). We have always managed this well at home and in school but as she is ageing the gap between her and her peers are widening. CAMHS are aware of this and explain this as a symptom of ADHD and her wanting control and predictability. I am sure her ADHD will play a part in all of this but putting medication to one side (even if my child will take it) didn't 'fix' everything the first time and appears to be the only solution on offer.

Hope that helps, as with everything there is always so much more to our LO's story. Thanks

Hi Cookie,

That really does sound really challenging. Adopted children tend to have a mix of both neurodevelopmental conditions AND developmental trauma/attachment difficulties. My daughter was dx with ADHD at age 6 and we started on medication straight away. Once this was under control we then saw other conditions which she was then dx with - dyslexia, dysplaxia and ASD.

My advice would be the following -

1. ADHD medication - you said it's stopped working - this happened to my daughter when she was on concerta (this medication can just stop working) and so her psychiatrist changed her to Elvanse and she has been fine on this. However we also had really bad rebound and so her psychiatrist added in intuniv (which is non stimulant) which works over a 24 hour period. So her behaviour re ADHD is now very well controlled although we do get challenging behaviour due to ASD). So speak again with CAMHS re medication and see what else you can try.
2. Once the ADHD is under control have her assessed again (privately if you can) for ASD. Or alternatively have her assessed by a speech and language therapist - although she won't be able to dx ASD she will be able to see it and assess how it affects her and put a plan of therapy in place to address these issues. My daughter has had SaLT for years and it really has helped although it's not a quick fix. It's in my daughter's EHCP. Also we had this done and she picked up the fact that my daughter had ASD. When we then went for the ASD assessment the consultant took the report and said "great this will tell me all I need to know". So it's well worth getting her assessed especially as the therapist will devise the therapy plan.
3. Consider if she is dyslexic. Dyslexia gives rise to the same behavioural symptoms as ADHD. An educational psychologist will be able to dx this. Once we had my daughter's ADHD under control we found that she still wasn't making any progress educational and her behaviour at school was still problematic. Despite increasing dose of meds there was no improvement and so we had her assessed for dyslexia and found that she was indeed dyslexic. School never picked up on this at all.
4. get in touch with post adoption support - ask for a full assessment of need - look at therapy for attachment/developmental trauma - eg art therapy, life story work.
5. Get her assessed by an Occupational therapist who will look at her sensory needs which will help with her regulation of behaviour.
6. Look after yourself - need to make sure you look after your own mental health - need to put your own oxygen mask on first before you can help anyone else.

Have a look at Viv Dawes - she is an autistic advocate and offers help for parents dealing with children with ASD and helps with avoiding autistic burnout and can also help liaise with schools. She has written a book called "supporting children and young people through autistic burnout". It's a very easy book to read and not only gives the theory but also practical advice as to what to do. I would highly recommend her book and her website. I will look up her website address and post it in a bit. Wishing you the best. Xx

www.autisticadvocate.co.uk

Xx
(Edited as had missed a . Out)

Also cookie have a look at Beacon House website as they have a lot of really good resources on sensory issues/trauma.

Also look at limpsfield grange school website - this is a school in Surrey for ASD girls and they have a lot of resources which you can download for free to help with strategies in the classroom to help girls with ASD. They also have other resources re ASD in girls.

www.beaconhouse.org.uk
www.limpsfieldgrange.co.uk
www.autisticadvocate.co.uk

Best wishes xx

You could ask for a second opinion from somewhere like Evelina or GOSH.

EHCPs are based on needs, not diagnosis. Therapies (including CBT. Although for some this doesn’t work particularly well even if it is adapted and they need other therapies/therapeutic input) can be included in the EHCP and a diagnosis isn’t required for that.

When was the last AR for the EHCP?

Thank you @Cheekychop

I will look at this.

Hi again. So you say birth mum has severe sen - do you mean a learning disability?

My girls' birth mother has a moderate learning disability and so does one of my daughters.

We got her privately assessed by an Ed psych - she had already been assessed for an ehc (it was a Statement back then) and she got it on behavioural grounds in Reception, so no one looked at her IQ levels.

In fact, in those days everyone believed everything was due to "attachment". She didn't cope well with being away from me either.

Ed psych suggested that a lot of her problems were due to her learning disability. She didn’t understand a lot of what was going on, so she was acting up out of boredom. She needed someone to help her navigate the world, so she didn't like being away from me.

Yes she was later diagnosed with adhd and the drugs helped a bit, but she had to stop taking them when she developed epilepsy (!) and we realised that the drugs weren't that helpful in fact.

Much later she was diagnosed with autism too, but tbh she seems to just tick all the boxes on whatever - adhd, autism, learning disability....

We also got referred to the genetics clinic (GP can do this) where her dna was assessed. She and her sister both have a missing chromosome, which is connected to learning disabilities and behaviour problems. We got birth mum assessed and she doesn't have it so they think it came from birth dad, who also had problems.

Hi there @ flawlessflipper

her last AR was March ready for transition to high school this term. We were fortunate enough to get increased funding for additional support at school and although its very early days the high school have been great although they are already concerned about her emotional needs as she attaches herself to adults over her peers.

I've also looked at O/T following a previous poster's advice, this has never been offered to us and looking at the criteria our daughter does fit this. Simply put, she has never been able to navigate the outside world on her own as this is too overwhelming for her to process. Does anyone have any experience on this please

Thanks

I would say your DD needs OT, including SIOT, SALT and some form of MH therapy/or therapeutic input at least. The latter could be anything from more traditional CBT, EMDR, things like animal-assisted therapy or something that isn’t specifically therapy like Mindjam. These can all be included in F of the EHCP.

It also sounds like an updated EP assessment would be helpful.

You can request an early review of DD’s EHCP. (In case it is relevant to you in the future/anyone else reading, for phase transfer to secondary school the phase transfer review meeting should have happened in the autumn term of Y6 with the EHCP naming the secondary placement finalised by 15th Feb of Y6.)

Hi @Arran2024

Thank you for sharing this. I hope your daughter is doing well, it sounds like you have both been through a lot.

Yes Birth mum has a confirmed learning disability with a very low IQ, sorry I am new to this and not great with the right wording of things. I think whats been so difficult with my LO is she achieves or exceeds in her learning and so fails to tick the right box for certain support. Her delays seem to be in the social and emotional areas and whilst we have been doing ok over the years the last 6 months have taken a real turn and the support she needs is more than what I or even an educational setting can provide which is probably the norm given her age.

Thank you @flawlessflipper

This is really useful and is probably what she has needed for a long time. Do you know the best for me to request this please.

Thanks

You can request an early review of the EHCP. On their website, IPSEA has a model letter you can use. As part of this process, you can request advice and information from professionals such as OT, SALT, CP, EP. The LA may or may not agree to seeking all this advice.

Following the AR process, you will get the right of appeal. You may need to appeal to secure all the required support. If you do need to appeal, you should consider independent assessments. If you can’t afford these, don’t panic, there are options. I won’t go into details now because it is getting too far ahead.

However, the LA doesn’t have to agree an early review. If that happens, you would either need to wait for the AR or request a reassessment of needs (which comes with the right of appeal if refused).

You could request a reassessment of needs now. Personally, I wouldn’t go down that route because even if the LA agrees to assess, a) it doesn’t guarantee good assessments (may LA reports are poor), and b) you may have to appeal to secure the required provision anyway so a reassessment of needs just delays things.

Have you considered other educational establishments if the current one isn’t working? Or if it is inappropriate for provision to be made in a school, EOTAS/EOTIS via the EHCP?

I would strongly advise, and you would certainly have nothing to lose, by logging your disappointment in the autism 'assessment' with PALS. If you can, then quote professionals who have seen autism traits in your daughter, and in particular the ADHD team who are now refusing to medicate her until she has had an assessment for autism. And be very clear that the lack of a proper assessment (e.g. ADOS) means that the ADHD team are no longer able to treat her. I went to PALS with less evidence than this, and managed to secure an ADOS assessment. If this fails you could also go to your GP and ask for an autism assessment under clinical partners 'right to choose'.

However, an autism diagnosis in and of itself is probably not going to help you or your daughter for the current situation she is in. It is possible for children who have both autism and ADHD to be medicated (for ADHD), so after the assessment, there is no reason not to have your daughter back under the ADHD team with a change either to the dose or the medication itself. Apart from that, a diagnosis will give you and her some validation and perhaps a shorthand in needing to explain her needs, but the diagnosis itself is usually the end of the road in terms of the medical journey, as autism is not something that is in any way 'treated'.

I assume you have already looked at the many different ways that autism presents itself. It should, in theory, be in the EHCP, but if not, look at ways you and the school can support her particular unique set of needs, regardless of any diagnosis. There is no 'one size fits all'. I'd recommend following Autism Inclusivity on Facebook.

It does sound like she would probably benefit from a more specialist school, and there are many types available, depending on the needs of the child. Start documenting the ways in which the school is not meeting your daughter's needs so that you have a case for moving her to a setting that is more accommodating of her needs. I assume the school are currently saying that they can 'meet need'. If they really can't then you need to point that out to them, as the school admitting that they can't meet need is another important step in securing a specialist setting.

As suggested upthread, also get a thorough assessment of need done via the adoption support fund. This may lead to some sensory integration therapy, play therapy or other therapy, but see what the assessment throws up.

I really feel for you. There is so much in your OP that feels so contradictory. Not in the way that you've written it, but in the sense of lack of joined up services literally sending you round in circles.

Good luck. I wish it wasn't such a battle getting proper support in place. This is where we are with SEN provision, though. Keep speaking up for your daughter. One thing I have learned is that staying quiet will not get you anywhere.

Just to add to the above post, the symptoms of ASD can be treated. ASD is a social communication and interaction condition and Speech and language therapy (SaLT) really can help with this - eg two way conversation, non Verbal cues, understanding the non verbal rules of conversation and social interactions with relationships, help with literal thinking, idioms, understanding "little white lies", linking feelings with facial expressions, helping them understand how friendships work and who is a close friend, acquaintance, stranger etc as girls with ASD tend to be very vulnerable and easily led.

Have a look at Becky Clark's website - under "information for parents and carers"section and it will show you how SaLT can help. Her website is

www.clarkslt.co.uk

Also one of the symptoms of ASD can be very high anxiety levels (due to masking) and anxiety can be medicated for.

So although you can't medicated for ASD itself, you can treat the symptoms through SaLT and anxiety can be medicated for.

I really can't stress enough how important SalT is for children with ASD especially girls who tend to present differently to boys.

Hope some of the above is helpful xx

Hi,

Thank you all for your advice. it has certainly given me more avenues I can try to help in better supporting my daughters needs with lots of resource that I will be digesting over the next few days, I cannot tell you how much I'm grateful for everyone's time

I do think a home education / SEN schooling may be more appropriate for her but she really wants to remain in mainstream education, I agree that she is likely masking a number of her behaviours and this will add to her struggles. She had a SALT assessment in her younger years and I do agree this was probably the most beneficial for her as although they were concerned of her autism traits, it was the help she gained with communication plan that was applied and is still being used as part of her EHCP. Does anyone know how I would go about getting another assessment, is this NHS funded, or does this come from her EHCP/ school?.

I will also be logging with PALS the poor treatment from CAMHS. Its a shame that it has come to this but I agree sitting silent will change nothing and with CAMHS documenting she is not vulnerable and all other specialists confirming otherwise action does need to be taken so ensure my LO is not forgotten.

You can request an NHS SALT referral. However, the offer is likely to be more limited than what is available via the EHCP. And it is unlikely the report will be written in the correct way for the EHCP.

You can follow the steps in my post yesterday at 15:46 to get updated reports for the EHCP/get the provision included in the EHCP.

But they are unlikely to agree to add SALT in without evidence. SALT is an expensive service for the LA to provide. I would either ask the school to bring in a sal therapist - they might do it- for an assessment. This might be enough. Can you still submit private assessments? If so, another option is to have her privately assessed.

my post yesterday explained how to go about seeking evidence for the EHCP and what to do if the LA refuse to include provision.

Hi again,

Thank you for getting back me, it doesn't hurt to try all avenues, as at present she is not coping even though she presents otherwise to CAMHS in their opinion. The information I am gaining is there are support services available outside the CAMHS network regardless of her being ADHD, autistic or both. I do have supporting evidence from an educational psychologist, SALT assessor, ADHD CAMHS, and school reports confirming issues surrounding communication, social and emotional delays and these have never really been readdressed because the pathway from every professional was she has autistic traits and to move on to a autism assessment for further support. Now this has been done and there are no concerns other than ADHD traits the next step would be to approach these services again and await next steps as her EHCP is designed and tailored to her being both ADHD and autistic. I think it will be a long process from what I am reading but I will get there.

Sorry, i didn't recall that.

But it is really, really hard to get additional provision added into an EHC from the baseline that was set when it was first established, unless something significant has changed. I don't think it's as simple as sending in a report and the LA ups the EHC. Providing SALT in an EHC is expensive for the LA and they might not want to do it- it might have to go to appeal.

I also wanted to add that my daughter has a clinical speech and language disorder - she was fully assessed by an independent therapist for her then Statement - but when the school sal saw her she signed her off with a few minor comments.

So I would always recommend a private assessment if you can.

Anyway, my daughter then went to a specialist speech and language school for secondary - sal was embedded into everything they did. And it didn't change her social communication problems one little bit. I'm not convinced that you can necessarily turn these issues round.

I didn’t say it was simple. My post explained OP may need to appeal. My post also mentioned about independent assessments.