An independent review of the Mental Health Act is currently underway and recently it published a report on its progress so far. But will it help autistic people get the support they need? 

This blog, by Jane Harris, our director of external affairs, explores what this means for autistic people and what the National Autistic Society believes should happen next.

Getting the right support for mental health problems is absolutely vital for autistic people. Autism is not a mental health condition. But research suggests that 70% of autistic people struggle with poor mental health at some point in their lives. This can be devastating. But far too many autistic people are left waiting for support– or are given treatments that simply won’t work for autistic people. 

What needs to change? 

At the National Autistic Society, we have been campaigning for better mental health support for a long time. Our charity’s work has included pushing for quicker autism diagnosis, getting mental health support after diagnosis, and reducing the number of autistic people who are ‘sectioned’.

When the Prime Minister announced an independent review into the Mental Health Act (the Act) last autumn, we saw an opportunity to address one of the big issues facing autistic people today.

At the moment, the Act in England and Wales includes autism in its definition of a 'mental disorder'. If someone has a mental disorder and is perceived by doctors to be a risk to themselves or other people and some other conditions are met, they can be detained under the Act and admitted to a mental health hospital. This is sometimes called being ‘sectioned’ and involves people losing key rights – to live where they want and to take medication as they choose (In Wales, the Mental Health Measure 2010 also applies). Being treated under the Mental Health Act should be a last resort, but at the moment too many autistic people end up being sectioned who could have been supported in different and much better ways.

The way that the Act is written at the moment means that autistic people can be sectioned without having a mental health problem. And, as our Transforming Care: our stories report showed, inpatient mental health hospitals are often absolutely the wrong place for autistic people to get support. Too many people can end up ‘stuck’, being supported by staff who don’t understand autism. And all too often nobody takes responsibility for finding the right place for people to move to in the community. 

Anna told us about her daughter Catherine’s experiences: 

She’s not getting any treatment, it’s just a holding pen because staff [in the unit] don’t have the right skills, expertise or mindset. She’s getting nothing while she’s there at all. Everything is about seclusion, never about trying to prevent incidents happening in the first place.

And David told us about his son Stephen not getting the help he needs: 

Stephen has often had to be hospitalised due to his behavioural problems, but as he does not have a learning disability, he does not receive any autism support whilst in hospital and is treated as if he has a mental health problem…

Because of his Asperger’s, he falls between the gaps of health, community mental health and social services with no one ultimately taking responsibility for defining his care package and finding a suitable home in the community that meets his hopes and aspirations.

It’s because of experiences like Catherine’s and Stephen’s that we have been calling for the definition of mental disorder to be changed so that it doesn’t include autism. We wrote to the independent review asking them to look at this closely. We asked autistic people and family members to send their experiences to the review team as well. Many people did - thank you to everyone who has made their voice heard. 

Progress so far

In the interim report last week, there is a (admittedly short) section on both learning disability and autism. And it acknowledges that:

- autistic people can end up being sectioned because there aren’t the right services available in the community
- understanding of autism isn’t good enough among professionals
- autistic people can end up spending years in hospitals
- many people end up in hospital far away from their friends, family and homes.

While this is a short section, it is really good news that the review has recognised what is going wrong for so many autistic people. 

Even more importantly, the interim report says that next the review will look at:

  1. Whether autism should still be within the definition of mental disorder in the Act
  2. How community services can support people better, to avoid them going to hospital
  3. Improving autism awareness among professionals
  4. How other changes to the Act that they might propose would affect autistic people

Only when these problems are resolved will autistic people, like Catherine and Stephen, get the support they need. We have to get this right, as the Mental Health Act sets out very important rights for all the citizens of this country. Autistic people must be able to share those same rights too.

We’ll continue to make sure that the needs and rights of autistic people are heard in this second stage of the review. We want to see a Mental Health Act that is fit for the one in 100 autistic people in England and Wales; that supports their mental health needs and protects their liberty.

Where to go for support

  • If you have concerns about your own or someone else’s health, you should speak to your GP and make sure they know you, or the person you are worried about, is on the autism spectrum
  • If you are concerned or would like advice about autism and mental health, please contact our Helpline. Please note, the helpline is open 10am – 4pm Monday-Thursday, 9am – 3pm on Friday
  • If you need advice on mental health, please contact the Mind Infoline, which is open 9am-6pm Monday to Friday, on 0300 123 3393
  • If you need urgent emotional support contact the Samaritans on Freephone number 116 123
  • If it is an emergency, call 999