Does your child with autism display behaviour that challenges?

Does your child with autism display behaviour that challenges?

One thing you need to know:

If you have a child with autism who displays challenging behaviour, chances are that you (like me a few years ago) aren’t aware that this could put them at risk of being admitted to a specialist hospital under the Mental Health Act 1989 (MHA).  Whether or not they have a serious mental health illness.

 

And another thing I didn’t know at the time: the MHA currently considers autism as a ‘mental disorder.’  Though here’s hoping that this might change, as the act is currently undergoing an Independent Review.

 

Challenging BehaviourMy son spent 18 hellish months in two acute treatment units with catastrophic consequences. God forbid that it should happen to another family but, if your loved one with autism ever approach crisis point, you need to know about Care and Treatment Reviews (CTRs*).  Asking for one of these could prevent your child inappropriately being sectioned under the MHA and being admitted to a mental health hospital. For more information about CTRs, please read Bringing Us Together’s Family Survival Guide to Care and Treatment Reviews.

 

I don’t mean to cause alarm. Hopefully, very few parents will ever need to ask for a CTR.  But letting other families know about CTRs is very important to me. Not just because I want to prevent what happened to my child from happening to someone else’s, but also because I’ve just discovered something that urgently needs to change.  And because, with only a year before the planned end of the Transforming Care Programme, there’s not a second to waste to get the word to those who need to know it most: families.

 

This week I learnt that, while the number of children with learning disabilities being sectioned under the MHA and being sent to specialist Mental Health Hospitals has gone down, the number of children with autism BEING SECTIONED (with or without learning disabilities) has risen.  And significantly so.

 

There might be a number of reasons for this.  Could it be that professionals (across education, health, social care) working with people with learning difficulties (and no autism) know about the Transforming Care Programme but that those working with autism (with or without learning difficulties) do not? Could it be that people with autism rarely seem to be given formal IQ assessments and therefore never make it on learning disability professionals radar? Or could it be that professionals (particularly it would seem in education and social care) do not understand or acknowledge that a person with an average or above average IQ may nevertheless be severely affected by their autism.

 

The good news is that the Transforming Care Programme does understand this.  And recognises that people with autism – with or without learning difficulties – need ‘Homes not Hospitals’.  So my message to families is this: CTRs could stop your child from ending up in a hospital rather than a home.  And, if the professionals involved with your child’s care aren’t aware of this, please feel free to share this blog with them.

 

* For people with autism, learning difficulties or both who are under the age of 18, the review also looks at your child’s education provision and is called a Care, Education and Treatment Review (CETR)

 

 

Isabelle Garnett

My pre-children years were spent in Editorial, first in books and then in journals. Then, when my son was diagnosed at a young age, volunteering in my local school became a career as a special educational needs practitioner. I became the Lead Practitioner for Autism across a Federation of mainstream primary schools, running its Autism Support Team. I was Secretary at my local NAS branch for many years and ran several local parent support groups. When my son hit crisis point and was admitted to an acute treatment unit as an inpatient, I mounted a campaign for him to receive appropriate treatment and care in the community. Now, I am campaigning and working collaboratively with ‘Stronger Together’ families, NHS England, charities and other partner organisations to ensure that ‘Homes not Hospitals’ become a reality for all people with autism, learning difficulties or both.

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5 Responses

  1. Liz says:

    My 22 year old son with Aspergers was wrongly diagnosed with Psychosis last year after being sectioned. He was released after 10 days because he “calmed down”. He spent 6 hellish months on antipsychotics, and a further year being treated by a psychosis team who clearly didn’t believe he had autism. He went into hospital again this year a voluntary patient and was sectioned purely because the staff don’t know how to approach and deal with autism and meltdowns. My son sustained terrible bruising from the extreme restraint the staff used, and he ended up on a PICU where thankfully the Consultant said he did not have psychosis. He spent a week on the PICU before being released as he had appealed his section. He was released back to the psychosis team purely because we have no adult autism team in our area. Of course his mental health detonated as nothing had been addressed during his admission and he came out traumatised because of the awful treatment he had endured. He got sectioned again (section 3 this time) after me begging for help for 3 weeks to prevent admission. He was put on a private PICU bed where the Consultant said after 2 weeks there was nothing wrong with him and that he was choosing to extreme behavioural problems! He was then moved to an nhs assessment bed and then a treatment bed where they stopped the Lorazepam abruptly and sent him into withdrawal syndrome making him paranoid and violent. He was then moved to the PICU ward and is currently being treated under the MICE guidelines for autism. The Consultant is amazing but the ward and the staff are not right for an autistic person, he is so traumatised by the overwhelming noise and when he has a meltdown he has to be restrained and put in seclusion. He has appealed his section but that will take 6 weeks to be heard. I hate that he will come out angry and traumatised. Why aren’t there adult autism teams in the community and specialist nhs autism mental health units that don’t have 6 month waiting lists 🙁

  2. Jennie says:

    My 13 year old daughter has been close to being sectioned twice in the last 3 months. She has a private diagnosis of ASD with a PDA profile. Whilst waiting in a police station trawling the internet I discovered the CTR however we are in Wales and there appears to be no such thing here. Is there anything I can do other than move!

  3. Finola Moss says:

    I think the reason why less LD are sectioned than Autistic is the way theMHA has been drafted as for a section the LD must also have I think it says serious behavioural issues so this is additional for sectioning LD but not for the autistic so easier to section for autism per se.

    Big question Why was autism added to the MHA less than 10 years ago as it is not a mental disorder and is this not Parliamentary discrimination under Autism Act that needs changing big time, as it makes it easy to section the autistic for ‘treatment’ in private for profit hospitals, the only ones the ASD are now allowed to be admitted to bUT AUTISM can’t be treated there is no cure but there is a lot of public money available to private hospitals up o 13,000 a week for a secure ward and US multi nations know they are a bonanza so UHS And Acadia OWN NEARLY ALL private mental hospitals and autistic adult residential.

  4. katherine says:

    Yes – we have a CeTR and my 15 YO daughter was still sectioned (again) and then without consultation of our consent, sent 300 miles away to a PICU. We ‘rescued’ her at the weekend (the sending HDU lied on the admission forms and left off her primary ASC need. The PICU consultant was livid and removed the section immediately and said it was no place for a child with ASC. She is now at home feeling very unsafe and has already overdosed this week. We have no support at home and the agencies can’t find anyone to accept her – that’s because they are looking at hospitals and not ASC care provision!!!

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