Hello, I’m Jane from the National Autistic Society and as this week is Mental Health
Awareness Week we thought it would be a good time to update everybody about what’s happening
with the Mental Health Act, and what that means for autistic people.
So first of all, what is the Mental Health Act?
Well it is a set of rules that says when somebody can have their liberty taken away and when
somebody can be forced to have treatment for what’s called a ‘mental disorder’.
Now slightly oddly the Mental Health Act defines mental disorder to include autism, even though
most of us know autism is not a mental health condition.
So that means, that in affect lots of autistic people can end up having their liberty taken
away and being forced to live in a hospital and have treatment even if they don’t have
a mental health problem purely because they’re autistic.
That’s not a great situation for anybody, just imagine having your liberty taken away,
being forced to live in a hospital, that really actually isn’t really helping you, where
even treatment can be almost detrimental because the environment just isn’t autism friendly,
and that hospital could also be hundreds of miles away from your friends and family.
So that is the situation that we really want to change at the National Autistic Society
and we think one of the ways we can do that is to try and change the Mental Health Act.
So what are we doing now?
Well the first thing we’re doing is we’re trying to, through our social care services,
support as many people as possible who are in that situation to leave hospital and come
out to a life in the community, a life that anybody else would want.
We know we can’t do that for everybody because that will depend on local commissioners giving
us funding to do that, and it will depend on professionals in hospital planning ahead,
through what is called a care and treatment review to allow someone to leave hospital
and try out some other kinds of support.
So that’s the first thing.
The second thing we’re trying to do is make sure many, many more families in that situation
get the information that they need.
Too many families don’t know how to challenge the process, don’t know how to support their
loved one through a care and treatment review kind of process, and we want to try and use
our network, use our resources, to help families to connect with each other, to share their
kind of information, to share what has worked for them, and we’re thinking about how we
can do that better.
But the third thing is trying to campaign to make sure that the Mental Health Act is
really fit for purpose, and what is great news is that the interim report that has come
out from the Mental Health Act review team has recognised that things are not working
for autistic people.
So there’s four things that they’ve said, and I’m just going to them up.
Firstly, it said that autistic people can end up being section and being treated under
the Mental Health Act, purely because there aren’t enough community services.
Not because they need that treatment, and not because they need to be in hospital, but
just because there aren’t services in the community.
Secondly, it says that understanding of autism isn’t good enough among mental health professionals,
we absolutely agree with that, that’s sometimes why it’s really, really difficult for people
to end up in hospital because the professionals who are meant to be supporting people just
don’t understand autism.
Thirdly, it says that autistic people can end up spending years and years in hospital.
That is sadly really true, we have met many families who talk about their loved ones spending
a year or two, or even longer in a hospital, and fourthly, it said that autistic people
are often in hospital miles and miles away from their loved ones, which obviously makes
the experience much worse for absolutely everybody.
So it’s really great that this review has realised that those four things are true.
Let’s be honest that won’t change anybody’s experiences tomorrow, there is still hundreds
of autistic people who are in hospital, who don’t need to be, and it’s still a massive
struggle for them and their families to get them the right support.
But given this review could of looked at all kinds of issues, not just about autistic people,
but all kinds of issues, it’s very, very good news that is has recognised what is going
wrong for autistic people and their families.
It’s a first step to changing that.
We’re going to keep pushing to make sure the next stage of the review puts in place
concrete action so that autistic people don’t end up in hospital who do not need to.
None of us enjoy being in hospital, but imagine being hospital if actually being there was
making your condition worse, was making your life and your health worse, not better.
It is an unbearable situation for many, many autistic people and their family members.
I also want to say thank you to everybody who has been in that situation who has shared
their experiences for the review.
A lot of time people are sharing very, very traumatic experiences and it’s sometimes
very hard to do that, and I think we need to applaud everybody’s bravery and courage
in doing so.
So we will continue to push for changes, to make sure there is concrete action to change
this situation for people.
If you want to keep up to date with what we’re doing in this area, please sign-up for our
email updates, which you can do at autism.org.uk and we will also continue this Mental Health
Awareness Week to share other people’s experiences of mental health problems and being autistic
and just what it’s like to try and get treatment if you do have a mental health problem, but
also what it’s like if you end up sectioned under the Mental Health Act, when you actually
don’t have a mental health problem, you’re just autistic.