To refuse early help referral

[Mumma2024]

Two children with ASD and ADHD diagnoses. DD 10, DS 6. DD is suffering hugely with her anxiety, it is crippling her and we are having a lot of violent outbursts. We have previously been on CIN under the disabilities team who couldn't offer anything helpful and with intrusive visits to boot.

What DD needs is to be under CAMHs, who keep refusing her as crippling anxiety is a part of autism. She's told me 3 times in a matter of weeks she does not want to be alive anymore. School want to do a referral to early help, to support me at home. What she needs is health support. In 10 years we've had a fairly revolving door of support workers/social workers etc. Who have virtually no understanding of the complex needs of both children. It is always pointless. I feel she needs proper mental health support and early help is just poorly addressing the symptoms and not touching the causes. I've been told everytime that we are well out of their knowledge set.

I feel if I refuse another early help referral then it will just be used against me, when in reality I've learnt that as a lone parent to two high needs children I have to be careful what I exert energy on and it's hard to justify exerting energy on something that has never helped.

AIBU to refuse? A small part thinks maybe it will lead to actual help but it is just exhausting.

I'm just wondering do early help get involved with contact arrangements for separated parents? I've had someone anonymously make contact with them however it's only for one of my children. But doesn't say which one. I'm just wondering don't you also have to have parental consent for there to be a refferal made to early help?

No, they don't get involved in contact. Early help won't work with you if you don't consent.

I work for an EH service. We do help with parental conflict and trying to help work out patterns of contact but we are a voluntary service so usually referrals are from schools where parents have consented to the referral and want the support. It's a bit strange for someone to anonymously refer you to early help. Unless the referral was made to children's services and was then passed to early help because it doesn't meet threshold.

It is just awful that autistic children with complex needs get frozen out of expert mental health support. It is a bit bizarre that relatively unskilled EH worked get positioned as the answer to these clinical needs. @SearchingForSolitude is right; if you can get experts to evidence DC's MH needs, getting provision in an EHCP may be the path to delivery of sufficiently skilled support.

Is there not private help available if your struggling this much with getting the correct help?

Private support for the needs OP describes can be extremely expensive. It is not a case of a few therapy sessions and all is well. The support OP’s DC will need is beyond what the majority of parents can fund, which is why an EHCP is important.

I've not read the full thread, but I do think refusing early help is short sighted.
They can offer so much as well as liaising with other professionals and school to ensure support is looked at holistically both for your dd, your other children and yourself.

I manage a camhs service, we honestly try our best to meet young people's needs.
People often think that we are the support they need when in reality we offer short term interventions.

Realistically is your dd ready to access support that will offer 6-& sessions?
Do you think she would be able to engage with the clinician in that time and be able to work to goal based outcomes?

I don't mean to be goady, quite the opposite.
Camhs will have suggested early help to the ground work so your dd is in a better position to access support.

To add as a parent myself I absolutely understand, I have a dd who is also diagnosed with autism.
After diagnosis there is no support available, nothing changes except we have a diagnostic report that states she is autistic.

Here is the problem.

OPs DC has two neurodevelopmental conditions, related anxiety and behavioural difficulties. These are complex clinical needs. We have a CAMHS manager who has convinced themselves that despite the fact that qualified SWs with a disability specialism have been unable to help, relatively unskilled EH workers are the answer. These workers can sometimes cause major problems for families of neurodiverse children because of their very limited understanding of neurodevelopmental conditions and appropriate parenting strategies. It's quite possible that OP's child's clinical needs will need to be met through longer term work with OP and her child. This is for clinicians to determine. It is a national scandal that these needs are not being properly assessed or met.

EH gets offered as a sop to parents in extremely challenging circumstances on waiting lists. Sometimes it's better than nothing, sometimes it is inappropriate and puts families under greater stress.

And as for the idea that autistic children in significant emotional distress must be denied appropriately skilled support until they can be made to conform with a service's 6-8 session goal-based model is bizarre. It is quite common that clinical work may need to be undertaken with a parent, rather than directly with a distressed child who is unable to participate.

I manage a camhs service, we honestly try our best to meet young people's needs.
People often think that we are the support they need when in reality we offer short term interventions.

and here is the problem. Neither CAMHS, nor social work, nor early help are set up to provide the support these young people need. There is only one service that provides anything like in my area and it charges. As I've said upthread social services are regularly asked to fund this support for families who are struggling but simply put the money isn't there to do it. Central government don't allocate enough funds to social care departments to cover the cost of autism specialist support. Families usually can't afford that support either - almost £2k for 12 sessions which is not enough to scratch the surface. But hopefully people can see why social services can't fund this for families regularly.

The issue is perhaps one for health and why the CCG does not have a neurodevelopmental service to support children and families with autism-related disorders, if it takes the view that CAMHS will not support autism-related MH and behavioural problems?

The lack of these services is a national scandal, as the lack of support is leaving children traumatised, and unable to participate in aspects of everyday life, leading to unnecessarily poor educational outcomes, and in some cases preventable brushes with the criminal justice system, and families in crisis, leading to parental mental ill health, difficulties sustaining employment etc. Even if we treated the damage to children and families as 'collateral' and just considered the cost of this damage to the state/economy, it is blindingly obvious that adequate and timely support for autism-related mental health or behavioural disorders is in everyone's interest.

Sorry OP, that doesn't help with your personal dilemma. Perhaps there is an option to have an exploratory chat, see what's on offer, and whether you feel the EH worker is a reasonable match with your families needs and you feel confidence will be able to respond appropriately to you? If you get a sense this will increase stress for you, rather than act as a source of support, you'll find a polite way to decline. It's one of the frustrations of the situations that relatively unskilled people, trained to deliver one-size-fits all interventions to families can sometimes be inflexible and critical of families who do not do things 'their way', and be dismissive of parental insights, making parents and children feel blamed for not meeting normative expectations. On meeting skilled health care professionals, there is an entirely different level of sensitivity for individual child and family situations and coping strategies, and more tailored, open-ended and collaborative problem solving, based on a thorough appreciation of the challenges faced by individual children and families.